intervention mapping final paper

Rachel GoodellIntervention Mapping

Final ExamFall 2012

Introduction

Celiac disease is an autoimmune disorder in genetically predisposed individuals,

causing villous atrophy in the small intestine as a result of gluten ingestion. It affects

approximately one percent of the population in the United States, and the only known,

effective treatment for celiac disease is a strict, lifelong adherence to a gluten-free diet

(Autodore, Verma, & Gupta, 2012; Gainer, 2011; Martin, 2008). This proposed program

aims to increase gluten-free diet adherence in an adult celiac population in the Houston

area.

Needs Assessment

To begin the intervention, a team of stakeholders is needed to plan, implement, and

evaluate the proposed program. This group should be comprised of people, organizations,

businesses, and government agencies that have an invested interest in the health problem

and its solution (Bartholomew, Parcel, Kok, Gottlieb, & Fernández, 2011). For gluten-free

diet adherence in adult celiac patients, this could include a wide variety of stakeholders.

The first group to include would be members of the target population: adult celiac

patients. It will be important to include a diverse group of celiac patients, including

different genders, races, ages, income levels, disease presentations, etc.

Health care professionals that are familiar with celiac disease and its treatment

would also be essential additions to the stakeholder workgroup. This would include

primary care physicians and gastroenterologists, who often diagnose patients and address

complications beyond diagnosis. Additionally, registered dieticians provide celiac patients


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with information regarding the gluten-free diet, tips for adherence, and where to find

gluten-free product, and so should be included in the stakeholder group.

Organizations devoted to providing information and support to celiac patients are

also key stakeholders for the proposed program. In Houston, the only group of this nature

found was the Houston Celiac Support Group (Houston Celiac Support Group, 2012).

Businesses that sell (or could sell) gluten-free products are another source of

potential stakeholders. This could include grocery stores, restaurants, and other specialty

food stores (such as bakeries, health stores, etc.). From this group, a diverse range of

businesses would again be ideal. From grocery stores, high-end or specialty stores, mid-

range and low-end stores, and independent corner stores would all be approached for

inclusion. Restaurant diversity would include both sit-down and fast food restaurants,

local and chain restaurants, and a variety of menu price points.

Other groups that could be included as potential stakeholders would include

government organizations, such as the Houston Health Department; health promotion

researchers, and program funders. Funding could come from a variety of sources, including

grants, government programs, and celiac organizations.

These potential stakeholders would be contacted using a snowball method. This

would begin at the celiac support group, where we would ask leaders and members to

participate. We would then ask the group to identify celiac patients who are non-members

(such as family members) that may be interested in collaborating on the program.

From this group, we would ask them to identify healthcare workers, restaurants,

grocery stores, and other people and organizations that could be tapped for inclusion in the


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workgroup. It is likely that celiac stakeholders will identify healthcare workers and

businesses that they frequent and have had success working with to manage their disease.

As such, it is expected that those identified will have a greater investment in the proposed

program objectives and would therefore be more likely to participate as stakeholders.

The identified people and groups would be contacted via telephone to invite them to

join the workgroup. These new stakeholders may be asked to identify additional parties

who may also be invested in the proposed program objectives, until a group that is diverse

and large enough is formed. Ideally, this workgroup would consist of at least five celiac

patients, three celiac group leaders, five healthcare workers, six restaurants and grocery

stores, two government agency representatives, one researcher, and one funder from each

funding source, for a total of 25-30 workgroup members.

Once the group is formed, the stakeholders would meet to discuss the group’s role

in addressing the health problem. This meeting may include defining the group and its

goals, as well as determining structure, “ground rules,” and a timeline for achievements.

This process will help facilitate group cohesion as well as group processes and decision-

making as the proposed program progresses (Bartholomew, Parcel, Kok, Gottlieb, &

Fernández, 2011).

Following this, the group can begin to perform a needs assessment. This could

include in-depth interviews with celiac patients, their families, and health workers to

determine the struggles they are facing. Adherence tests could also be used to determine

the rates of gluten-free diet compliance in this specific population. Additionally, surveys

could be sent to area restaurants and grocery stores to determine their celiac disease and


Final ExamFall 2012

gluten-free diet knowledge, and to assess the availability and cost of gluten-free food in the

community.

The target population for this intervention would be adult celiac patients in the

Houston area. While there are no demographic data regarding Houston celiac patients

specifically, information from other studies in the U.S. should provide a close estimate to

the Houston population. Celiac disease affects approximately one percent of the U.S.

population, and its prevalence is between four and five times higher than it was 50 years

ago, making it one of the most common life-long conditions in the United States (Gainer,

2011; Lee, Ng, Ciaccio, & Green, 2012; Lee, Ng, Zivin, & Green, 2007; Reilly & Green, 2012;

Riddle, Murray, & Porter, 2012). Those with a first-degree relative with celiac disease have

a much greater risk of disease (1:22), while those with no family history are less

susceptible (1:133) (Autodore, Verma, & Gupta, 2012; Edwards George, Leffler, Dennis,

Franko, Blom-Hoffman, & Kelly, 2009; Martin, 2008; O’Donnell & Edelstein, 2009). These

rates, however, are expected to rise (Autodore, Verma, & Gupta), considering the high rate

of undiagnosis in the U.S. (Herman, Rubio-Tapia, Lahr, Van Dyke, & Murray, 2012; Lee et al.,

2007; Reilly & Green).

Women are two to three times more likely than men to be diagnosed with celiac

disease; however, the prevalence rates are much more equal in very young and very old

populations, suggesting either a difference in the severity of symptoms or utilization of

health services (Reilly & Green, 2012, Riddle, Murray, & Porter, 2012). Celiac disease used

to be considered a problem of childhood, but research has shown that its incidence actually

increases with age (Vilppula et al., 2011). Caucasians are also considered to have a greater


Final ExamFall 2012

risk of developing the disease, but it is becoming increasingly more common in all other

races (O’Donnell & Edelstein, 2009; Reilly & Green; Riddle, Murray, & Porter).

A strict gluten-free diet is the only known effective treatment for celiac disease, and

is absolutely essential to avoid intestinal damage and other associated complications

(Gainer, 2011; Herman et al., 2012; Lee et al., 2012). Unfortunately, adherence rates are

often lacking. Measures of adherence in the U.S. vary widely, ranging from 17 to 91 percent

(Autodore, Verma, & Gupta, 2012; Edwards George et al., 2009; Herman et al.; Leffler et al.,

2008; Martin, 2008). Worldwide, the estimate of strict compliance is between 36 and 65

percent (Barratt, Leeds, & Sanders, 2011; Bebb, Lawson, Knight, & Long, 2006; Hopman,

Koopman, Wit, & Mearin, 2009; Pietzak, 2005; Sainsbury & Mullan, 2011). In the U.S.,

women and patients with additional food intolerances had the highest adherence rates,

while men, teens, minorities, and those with reduced income had the lowest rates

(Autodore, Verma, & Gupta; Black & Orfila, 2011; Edwards George et al.; Lee et al., 2007;

Leffler et al.; O’Donnell & Edelstein 2009). Findings have been mixed regarding compliance

stratified by age at diagnosis, by education, and by symptom presentation (Autodore,

Verma, & Gupta; Ciacci, Cirillo, Cavallaro, & Mazzacca, 2002; Edwards George et al.; Leffler

et al.).

Houston has a population of approximately 2.1 million people (49.8 percent female),

with a diverse racial and ethnic background, including 919,688 identified as Hispanic or

Latino (any race, 43.8 percent), 537,901 as Caucasian (non-Hispanic, 25.6 percent),

485,956 as Black or African American (non-Hispanic or Latino, 23.1 percent), and 124,859

as Asian (non-Hispanic, 5.9 percent) (U.S. Census Bureau, 2010). Of those, there are 1.56


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million adults (50.1 percent female, 38.8 percent ages 18-34, 49 percent 35-64, 12.2

percent over 65) (U.S. Census Bureau).

Houston residents face significant racial disparities in education and income. While

95 percent of non-Hispanic Caucasians earn their high school diploma, only 80 percent of

Hispanics and 88% of African Americans do the same. Additionally, 46 percent of non-

Hispanic Caucasians and 61 percent of Asians earn a college degree or higher, while only 16

percent of Hispanics and 25 percent of African Americans do so. Approximately 16 percent

of all families in Houston live below the poverty line, the majority of who are minorities

(Houston Department of Health and Human Services, 2008).

This program proposal will be entering the PRECEDE model from the behavioral

risk phase, namely gluten-free diet adherence. Non-adherence can cause many health

problems, both immediate and latent, both gastrointestinal and non-gastrointestinal in

nature, and ranging for mild to severe and can even increase the risk of mortality (Bebb et

al., 2006; Edwards George et al., 2009; Gainer, 2011; Herman et al., 2012; Lee et al., 2007;

Pietzak, 2005; Smith & Goodfellow, 2011). Typical gastrointestinal problems associated

with untreated celiac disease include malnutrition, abdominal distention, acid reflux,

vomiting, dyspepsia, intestinal damage, steatorrhea, diarrhea, large and malodorous stools,

constipation, and flatulence (Addolorato, De Lorenzo, Abenavoli, Leggio, Capristo, &

Gasbarrini, 2004; Autodore, Verma, & Gupta, 2012; Butterworth, Banfield, Iqbal, & Cooper,

2004; Edwards George et al.; Gainer; Hopman et al., 2009; Martin, 2008; O’Donnell &

Edelstein, 2009; Sainsbury & Mullan, 2011; Singh & Whelan, 2011; Smith and Goodfellow;

Ukkola et al., 2012; Vilppula et al., 2011; Zimmer, 2011).


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Non-gastrointestinal problems can include anemia, infertility, miscarriage, low birth

weight, hair loss, osteoporosis, osteopenia, dermatitis herpetiformis, affective disorders,

tiredness, weakness, and peripheral neuropathy (Addolorato et al., 2004; Autodore, Verna,

& Gupta, 2012; Bebb et al., 2006; Butterworth et al., 2004; Edwards George et al., 2009;

Evans & Sanders, 2010; Gainer, 2011; Hallert, Sandlund, & Broqvist, 2003; Hopman et al.,

2009; Leffler et al., 2008; O’Donnell & Edelstein, 2009; Reilly & Green, 2012; Riddle,

Murray, & Porter, 2012; Sainsbury & Mullan, 2011; Singh & Whelan, 2011; Smith &

Goodfellow, 2011; Ukkola et al., 2012; Vippula et al., 2011; Zimmer, 2011).

Long-term non-adherence can also increase the risk of comorbidity with other

autoimmune disease and disorders, as well as cancer, particularly gastrointestinal cancers

and lymphoma (Autodore, Verna, & Gupta, 2012; Bebb et al., 2006; Cosnes et al., 2008;

Evans & Sanders, 2010; Gainer, 2011; James, Mead, & Smith, 2011; Leffler et al., 2008;

Martin, 2008; O’Donnell & Edelstein, 2009; Sainsbury & Mullan, 2011; Signh & Whelan,

2011).

Such adverse health outcomes can then further lead to lowered indicators of quality

of life. As mentioned previously, non-adherent celiac patients have an increased risk of

affective disorders, such as depression and anxiety. These disorders have been associated

with reduced quality of life and decreased sense of well-being (Addolorato et al., 2004;

Edwards George et al., 2009). Additionally, O’Donnell and Edelstein (2009) found that 50

percent of low-income celiac patients had missed school or work as a result of disease

complications. Of those that experienced absenteeism, 59 percent were not strictly


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adhering to a gluten-free diet. Many patients also saw a reduction in income, as a result of

their missed work.

To determine the importance of a positive sense of well-being to celiac patients, in

depth interviews could be conducted with patients who are experiencing and who are not

experiencing an affective disorder. These interviews would provide information on celiac

patients’ decision-making process regarding gluten consumption, and how those decisions

impact their quality of life, and how their quality of life impacts future decisions. Possible

questions to ask could include:

• How do you feel when you are compliant with your gluten-free diet? How does the

way you feel influence your decision to not eat gluten?

• How do you feel when you are not complaint with your gluten-free diet? How does

the way you feel influence your decision to eat gluten?

• Are you satisfied with the way you feel about yourself, with regard to your celiac

disease? Why or why not?

Surveys could be sent to celiac patients to determine the importance of work and

school attendance to them. These surveys would provide information such as absentee

rates, feelings about missed work and school, and how absenteeism affects other areas of

their life, such as income. Possible questions could include:

• How many days in the last year have you missed school or work as a direct result

of your celiac disease?

• Do you think you miss fewer, more, or about the same number of days as co-

workers (or classmates) who do not have celiac disease?


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• How important is it that you do not miss school or work (Very Important,

Somewhat Important, Not Important)?

• Have you noticed an impact on your life as a result of missing school or work? If so,

please describe the impact.

Based on the aforementioned health problems and quality of life issues associated

with non-adherence to a gluten-free diet, promoting compliance appears to be an effective

solution to target. However, there are many reasons for non-adherence that are outside of

the control of the celiac patient.

Cost and availability of gluten-free products were both mentioned numerous times

as environmental factors affecting diet adherence. Araújo and Araújo (2011) found that

57.14 percent of study participants were unsatisfied with the price of gluten-free foods,

while Smith and Goodfellow (2011) found that 61 percent of their participants said cost

was an issue for them, and O’Donnell and Edelstein (2009) found that 94 percent of their

study participants believed gluten-free products were too expensive. Indeed, research has

shown that gluten-free products are two to three times more expensive than their gluten-

based alternatives, and this is especially true for processed, prepackaged convenience

foods (Black & Orfila, 2011; Butterworth et al., 2004; Case, 2005; Lee et al., 2007; Martin,

2008; O’Donnell & Edelstein; Singh & Whelan, 2011; Smith & Goodfellow; Sverker, Östlund,

Hallert, & Hensing, 2009). Additionally, many celiac patients rely on naturally gluten-free

foods, such as fresh produce and meat, which is also more expensive than prepackaged

food (Lee et al., 2007). Leffler et al. (2008) found that while many people felt cost was an

issue, 75.3 percent of them did not believe it affected their adherence. However, those that


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did say gluten-free products’ high costs made adherence difficult were more likely to have

poor adherence. Edwards George et al. (2009) also found product cost and adherence to be

associated.

Though the number of new gluten-free products has increased drastically in recent

years (187 new products were introduced in 2001, compared to 691 in 2005) (Shadix,

2006), many celiac patients still have trouble finding gluten-free products or have limited

options. Araújo and Araújo (2011) found that 83 percent of participants had difficulty

locating gluten-free products, and 74.49 percent were not satisfied with the selection

available. Lee et al. (2007) compared ‘market baskets’ of gluten-based foods and gluten-

free alternatives in four U.S. cities, and found that only 36 percent of the items were

available in regular grocery stores, 42 percent were available in upscale grocery stores, and

even health stores only carried 94 percent of the products, while 100 percent of the gluten-

based products were available in every store. Singh and Whelan (2011) did a similar study

in the United Kingdom and had comparable results. Additionally, they found no gluten-free

products were available in the budget grocery and corner stores surveyed, which may be

the primary source of food for many low-income celiac patients. Furthermore, Edwards

George et al. (2009) found that limited availability of gluten-free products was associated

with lower diet adherence.

Several studies also found a general sense of difficulty eating outside the home,

particularly in restaurants, while traveling, and while dining with friends or relatives.

Smith and Goodfellow (2011) found that 12 percent of study participants said they have

difficulty adhering to a gluten-free diet while traveling, and Barratt, Leeds, and Sanders


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(2011) found that 72 percent of participants found adherence difficult during travel. Smith

and Goodfellow also found that 57 percent had difficulty adhering during social gatherings

with friends and relatives. Furthermore, Lee et al. (2012) found that 81 percent of men and

88 percent of women lapsed during social events, and 58 percent of celiac men and 67

percent of celiac women lapsed while eating with friends. O’Donnell and Edelstein (2009)

found that 68 percent of celiac patients believed there were minimal gluten-free options

available at restaurants, despite an increase in availability at several chain restaurants

(Shadix, 2006). Regardless, 57 percent of participants from Smith and Goodfellow and 88

percent from Barratt, Leeds, and Sanders reported difficulty adhering while eating out.

Furthermore, 82 percent of celiac men and 88 percent of celiac women reported dietary

lapses while eating at restaurants (Lee et al.). Butterworth (2004) and Leffler et al. (2008)

found that some celiac patients chose to avoid restaurants as a means to avoid inadvertent

gluten consumption; however, Leffler et al. found that avoidance did not improve

compliance.

Social support was another issue that was repeatedly reported. As mentioned

previously, many celiac patients report dietary lapses while engaging in social activities.

Participants from Sverker, Hensing, and Hallert’s (2005) study reported that their disease

status gave them unwanted visibility from others, so some chose to avoid disclosure and

even eat gluten-containing food. Others reported feeling neglected or forgotten when

gluten-free food was not available. Despite this, Sainsbury and Mullen (2011) found that

social support did not play a big role in adherence, as most celiac patients said they would

maintain a gluten-free diet regardless of what others thought.


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Unclear labeling and unnatural sources of gluten were also reported as problems for

adherence. Ukkola et al. (2012) found that 15 percent of those who had difficulty adhering

to a gluten-free diet felt that labels poorly identified gluten content, and Edwards George et

al. (2009) Diaz-Amigo and Popping (2012), and Pietzak (2005) all cited unclear labels as

problems for patients.

There are also many products that have hidden sources of gluten, which is often

used as a thickener because of its viscoelastic properties (Diaz-Amigo & Popping, 2012;

Shadix, 2006; Singh & Whelan, 2011). As such, it is also used in many non-food products,

such as lipstick, lip gloss, and lip balm; mouthwash and toothpaste; envelope and stamp

glue; vitamins, supplements, and medicine; and craft supplies (Autodore, Verma, & Gupta,

2012; Gainer, 2011; Martin, 2008).

Lack of follow-up with healthcare workers is another oft-cited factor attributing to

low adherence rates. Herman et al. (2012) found that only two-thirds of celiac patients had

any serologic testing (to determine progression of the disease and effects of dietary

adherence) during follow-up over a 5-year period, and many follow-up appointments

provided inadequate evaluation.

Furthermore, many celiac patients have limited access to health care services

(Stuckey, Lowdon, & Howdle, 2009), particularly to dieticians (Case, 2005; O’Donnell &

Edelstein, 2009; Ukkola et al., 2012). Moreover, those that do have access are often

unsatisfied with the information they receive. Leffler et al. (2008) found that 37 percent of

celiac patients did not receive adequate information from their dietician, 43.9 percent from

their gastroenterologist, 64.3 percent from their primary care physician, and 77.3 percent


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from their pharmacist. Others found that celiac patients did not feel their information

sources were helpful or sufficient, and that they were receiving information that was

conflicting, incorrect, or outdated (Bebb et al., 2006; Case, 2005).

Several determinants have been found to explain the environmental factors listed

above. Sainsbury and Mullen (2011) found that many celiac patients believed restaurant

staff had a lack of awareness regarding celiac disease and gluten-free food. Karajeh,

Hurlstone, Patel, & Sanders (2005) found chefs were significantly less likely than the

general public to have heard of celiac disease (17.1 percent vs. 44.2 percent, respectively),

including only 8.1 percent of chefs working in fast food, which could help explain limited

gluten-free food selection in restaurants.

While food labeling has been a problem previously, the Food Allergen Labeling and

Consumer Protection Act was put in place to help alleviate some of those issues. The act,

which went into effect on January 1, 2006, requires all food labels to clearly state any

common allergens in the ingredients, including wheat. However, this did not include barley,

rye, or oats, which are also problematic for celiac patients. Furthermore, there are no

official rules for using the term “gluten-free” (Bren, 2006). The current proposal is to allow

20 g of gluten per kilogram of product, but this label; however, will not account for cross-μ

contamination on naturally gluten-free products (Pietzak), which can be found in trace

amounts on over 80 percent of naturally gluten-free food (Araújo & Araújo, 2011), thus

making it difficult to assess the true gluten content of a product based on the label

information (Diaz-Amigo & Popping, 2012).


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Though there is a lack of adequate follow-up in celiac patients, there are no specific

recommendations regarding proper follow-up procedure with celiac disease(Stuckey,

Lowdon, & Howdle, 2009). Furthermore, dieticians’ services are often not covered by

insurance, making follow-up more costly and more difficult to accomplish (Case, 2005;

O’Donnell & Edelstein, 2009; Ukkola et al., 2012).

Regardless, Stucky, Lowdon & Howdle reported a lack of evidence that ongoing follow-up

will actually improve compliance, and therefore recommend it for further study.

Many environmental factors affect gluten-free diet compliance, but availability and

variety of gluten-free products, particularly in restaurants, as well as knowledge of

restaurant staff stand out as most important because of their relative ease of changeability

and considerable effect on adherence rates. Restaurants, as previously stated, are a great

source of difficulty for celiac patients and where intentional gluten ingestion often occurs.

Restaurant workers have also been shown to have poor awareness of celiac disease and

could potentially be contributing to unintentional gluten ingestion as a result.

In addition to environmental factors, there are a number of personal determinants

also affecting gluten-free diet adherence. Sainsbury and Mullen (2011) found a correlation

between perceived difficulty of maintaining a gluten-free diet and intention to maintain as

well as perceived difficulty and actual adherence. Barratt, Leeds, and Sanders (2011) found

that 80 percent of their study participants believed the gluten-free diet was difficult to

maintain, and Butterworth et al. (2004) found that 45 percent of participants believed a

strict gluten-free diet was “very or moderately difficult.” Lee et al. (2012) also reported that

68 percent of their participants perceived a gluten-free diet as difficult to follow. Several


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other studies also found that celiac patients often found a gluten free diet to be too

restrictive (Lee et al., 2012; Martin, 2008; Sainsbury & Mullen; Ukkola et al., 2012).

Lack of knowledge regarding gluten-free diet has been shown to negatively affect

adherence. Leffler et al. (2008) found that those who were poor adherers scored lower on a

gluten identification test than good adherers. O’Donnell and Edelstein (2009) also found

that 82 percent of those who could not identify gluten-free foods had difficulty adhering.

Furthermore, Ukkola et al. (2012) found that of the 12 percent of celiac patients who

reported having difficulty adhering to a gluten-free diet, 82 percent of them had a lack of

knowledge regarding the diet.

Sainsbury and Mullen (2011) found that control beliefs provided a significant

contribution to adherence variation, while Jacobsson, Friedrichsen, Göransson and Hallert

(2011) found that celiac patients reported a sense of powerlessness, and a decrease in

adherence motivation.

Several studies reported decreased negative outcome expectations regarding gluten

exposure (Dewar, Donnelly, McLaughlin, Johnson, Ellis, & Ciclitira, 2012; Edwards George

et al., 2009; Pietzak, 2005; Sverker, Hensing, & Hallert, 2005), and others reported that

many celiac patients disliked the taste or quality of gluten-free products (Edwards George

et al. Evans & Sanders, 2010; Lee et al., 2012; Lee et al., 2007; Pietzak; Smith & Goodfellow,

2011).

Sainsbury and Mullen (2011) point out that very few interventions have been

initiated to increase gluten-free diet adherence in celiac patients. As such, the following

objectives regarding behavioral outcomes, health outcomes, and environmental factors are


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based on limited information, and estimates have been borrowed from related frames of

reference:

• Increase gluten-free diet adherence from approximately 60 percent to 90 percent

in celiac patients over nine months.

• Decrease reported diarrhea symptoms from approximately 75 percent to 35

percent of celiac patients over six months.

• Increase restaurant workers’ awareness of celiac disease and gluten-free diet from

approximately 17 percent to 44 percent over six months.

Addolorato et al. (2004) reported an approximately 50 percent increase in gluten-

free diet adherence in female celiac patients following a 10-week support group

intervention and a 6-month follow-up. This study was the only successful intervention

found that measured an increase in dietary adherence. As such, these are the best available

estimates of what is achievable through an intervention.

Murray, Watson, Clearman, & Mitros (2004) reported a decrease of over 55 percent

in the occurrence of diarrhea in newly diagnosed celiac patients six months after starting a

gluten-free diet. Since these patients are newly diagnosed, and the target population for

this intervention proposal will be prevalent cases, these numbers may be artificially high.

However, depending on the occurrence rates of diarrhea in the target population, a

decrease of 50 percent should be achievable.

Karajeh et al. (2005) found that the general public in the U.K. was 2.58 times more

likely to be aware of celiac disease than chefs. There are no known barriers to impede chefs

and other restaurant workers from matching public awareness, so that is the target goal for


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restaurant workers. However, there are no studies to model this objective after, and as

such, six months was chosen to keep this objective in line with the other two program

objectives.

Logic Model


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Behavioral Outcomes

Strict adherence to a gluten-free diet is the only known effective treatment for celiac

disease, and if followed, can prevent complications such as further intestinal damage and

can also repair existing damage (Gainer, 2011; Herman et al., 2012; Lee et al., 2012).

Despite this, rates of strict adherence are strikingly low, estimated to be between 36 to 65

percent worldwide (Barratt, Leeds, & Sanders, 2011; Bebb, Lawson, Knight, & Long, 2006;

Hopman, Koopman, Wit, & Mearin, 2009; Pietzak, 2005; Sainsbury & Mullan, 2011).

Many personal determinants for low adherence have been researched. Sainsbury

and Mullan (2011) found a correlation between perceived difficulty of adherence and

actual adhere. Barratt, Leeds, and Sanders (2011) also found that 80 percent of study

participants reported difficulty in maintaining their diet, while 45 percent of Butterworth

et al.’s (2004) participants reported that a strict gluten-free diet was “very or moderately

difficult” to maintain. Additionally, 68 percent of Lee et al.’s (2012) participants described

gluten-free diet adherence as difficult, and several other studies reported that celiac

patients often believed the diet was too restrictive (Lee, Ng, Ciacco, & Green, 2012; Martin,

2008; Sainsbury & Mullan; Ukkola et al., 2012).

Difficulty finding gluten-free products has been associated with perceived difficulty

of adherence (Edwards George et al., 2009). Despite a growing market for gluten-free

products (Shadix, 2006), Araújo and Araújo (2011) found that 83 percent of study

participants had difficulty locating gluten-free products when shopping.

Several other studies have also found that celiac patients often find it difficult to eat

outside the home, particularly at restaurants and while dining with friends or relatives.


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Smith and Goodfellow (2011) found that 57 percent of study participants had difficulty

adhering during social gatherings with friends and relatives, and Lee et al. (2012) found

that 58 percent of celiac men and 67 percent of celiac women lapsed while eating with

friends. Smith and Goodfellow also found that 57 percent of participants had difficulty

eating at restaurants, while Barratt, Leeds, and Sanders (2011) found that 88 percent of

participants reported difficulty adhering at restaurants. Lee et al. (2012) found that 82

percent of celiac men and 88 percent of celiac women reported lapses in adherence while

eating at restaurants.

Several studies have also found that celiac patients have difficulty eating at home,

although these problems are less pronounced. Barratt, Leeds, and Sanders (2011) found

that 11 percent of participants had difficulty eating at home. Sverker, Östlund, Hallert, and

Hensing (2009) and Sverker, Hensing, and Hallert (2005) also found that celiac patients

struggled with managing meals for themselves and their families at home.

Based on the problem areas mentioned above, the following behavioral outcomes

are proposed:

• B.O.1: Purchase only gluten-free food at the grocery store every time.

• B.O.2: Eat only gluten-free food at home every time.

• B.O.3: Eat only gluten-free food at friends’ or family members’ homes every time.

• B.O.4: Eat only gluten-free food at restaurants every time.

These outcomes represent the bulk of food consumption areas for celiac patients.

While there are other situations where diet adherence may be difficult, these four areas


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encompass goals than can also be applicable in other areas that may be troublesome, such

as while travelling or at work (Sverker et al., 2009; Sverker, Hensing, & Hallert, 2005).

Environmental Outcomes

As mentioned above, purchasing food and eating away from home are both difficult

areas for gluten-free diet adherence. Many celiac patients have expressed disappointment

in the variety of gluten-free foods available. Araújo and Araújo (2011) found that 74.49

percent of study participants were not satisfied with the selection of gluten-free products

available to them. Lee et al. (2007) compared ‘market baskets’ of gluten-based foods and

gluten-free alternatives in four U.S. cities and found that only 36 percent of the items were

available in regular grocery stores, 42 percent were available in upscale grocery stores, and

even health stores only carried 94 percent of the products, while 100 percent of the gluten-

based products were available in every store. Singh and Whelan (2011) did a similar study

in the United Kingdom and had comparable results. Additionally, they found no gluten-free

products were available in the budget grocery store and corner stores surveyed, which may

be the primary source of food for many low-income celiac patients.

Availability of gluten-free food was also a problem at restaurants. O’Donnell and

Edelstein (2009) found that 68 percent of celiac patients believed there were minimal

gluten-free options available at restaurants, despite an increase in availability at several

chain restaurants (Shadix, 2006).

Several studies also cited unclear labeling as a source of difficulty to adherence.

Ukkola et al. (2012) found that 15 percent of those who had difficulty adhering to a gluten-

free diet felt that labels poorly identified gluten content, and Edwards George et al. (2009)


Final ExamFall 2012

as well as Diaz-Amigo and Popping (2012), and Pietzak (2005) all cited unclear labels as

problems for celiac patients. No studies cited specific issues with gluten-free labeling in

restaurants, but because restaurants rarely identify ingredients or allergens, these labeling

issues are likely generalizable to restaurants; however, additional research may be needed

to confirm this.

Sainsbury and Mullan (2011) found that many celiac patients believed restaurant

staff had a lack of awareness regarding celiac disease and gluten-free food. Karajeh,

Hurlstone, Patel, and Sanders (2005) found chefs were significantly less likely than the

general public to have heard of celiac disease (17.1 percent vs. 44.2 percent, respectively),

including only 8.1 percent of chefs working in fast food, which could help explain limited

gluten-free food selection in restaurants as well.

Additionally, Ahuja and Sicherer (2007) studied New York City restaurant workers’

beliefs about food allergies. Though celiac disease is not an allergy, it requires avoidance of

certain foods, similarly to people with food allergies. The researchers found that 72 percent

of restaurant workers felt at least “somewhat comfortable” providing an allergen-free meal,

and 70 percent felt the same that they could guarantee an allergen free meal. Despite this

confidence, only 22 percent of participants correctly answered all five food-allergy

knowledge questions, which are described next. Ahuja and Sicherer found that 24 percent

of the restaurant workers believed it was acceptable to eat small amounts of food allergen,

35 percent believed most allergens would be destroyed when exposed to high levels of

heat, 54 percent believed a clean buffet containing allergens would be a safe food choice,

and 25 percent believed it was acceptable to remove an allergen from a finished product


Final ExamFall 2012

and then serve it. Furthermore, there was no correlation between confidence and

knowledge, suggesting a high potential for exposure to allergens, and subsequently, gluten.

Though no studies were found showing a lack of awareness or knowledge regarding

celiac disease or other food intolerances, it is likely that grocery store workers would have

similar results as the restaurant workers studied above. However, additional research

would need to be done to determine if this is true. Adapting the questionnaires used for the

restaurant workers to address any unique situations found in grocery stores could achieve

this goal.

Based on the environmental factors listed above, the following environmental

objectives are proposed:

• E.B.O.1: Grocery store product manager will increase the number of gluten-

alternative food available at grocery store.

• E.B.O.2: Grocery store manager will increase visibility of gluten-alternative foods at

grocery store.

• E.B.O.3: Grocery store manager will increase visibility of naturally gluten-free foods

at grocery store.

• E.B.O.4: Grocery store workers will assist customers shopping for gluten-free foods

at grocery store.

• E.B.O.5: Restaurant manager will increase number of gluten-free menu items at

restaurant.

• E.B.O.6: Restaurant manager will increase visibility of gluten-free options at

restaurant.


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• E.B.O.7: Restaurant servers will assist guests asking about gluten-free options at

restaurant.

• E.B.O.8: Food preparers will prepare gluten-free foods at restaurant.

• E.B.O.9: Friends and family of celiac disease patients will provide gluten-free food

for CD friends and family who are visiting.

As mentioned previously, eating and shopping outside the home are the areas of

greatest difficulty for adherence. While other situations such as travelling and work are

also problems for celiac patients, these types of situations cater to much smaller numbers

of celiac patients and change may be too great of a burden.

Priority Population Differentiation

The proposed intervention is targeted at adult celiac patients in the greater Houston

area. Houston has a population of approximately 2.1 million people (49.8 percent female),

with a diverse racial and ethnic background, including 919,688 persons identified as

Hispanic or Latino (any race, 43.8 percent), 537,901 as Caucasian (non-Hispanic or Latino,

25.6 percent), 485,956 as Black or African American (non-Hispanic or Latino, 23.1

percent), and 124,859 as Asian (non-Hispanic, 5.9 percent) (U.S. Census Bureau, 2010). Of

those, there are 1.56 million adults (50.1 percent female, 38.8 percent ages 18-34, 49

percent 35-64, 12.2 percent over 65) (U.S. Census Bureau). These numbers would suggest

there are approximately 15,000 adult celiac patients in Houston; however, diagnosis is

thought to be as low as 5 percent in the United States (Reilly & Green, 2012), so diagnosed

celiac patients in Houston may be as low as 750. In the U.S., women and patients with

additional food intolerances have the highest rates of adherence, while men, minorities,


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and those with reduced income had the lowest rates (Autodore, Verma, & Gupta, 2012;

Black & Orfila, 2011; Edwards George et al., 2009; Lee et al., 2007; Leffler et al., 2008;

O’Donnell & Edelstein, 2009). In a self-reported survey, only 43 percent of South Asians

thought they were fully compliant, compared to 68 percent of Caucasians (Butterworth et

al., 2004), while Brar, Lee, Lewis, Bhagat, and Green (2006) found that only 44.4 percent of

a small group of African American celiac patients were fully adherent. Dieticians reported

that only 17 to 31 percent of their low-income patients were strictly adherent (O’Donnell &

Edelstein). Despite these differences in adherence rates, there is little to suggest that these

different groups should manage their adherence behaviors differently from one another. As

such, there will be no differentiation between subgroups for behavioral outcomes or

performance objectives. Despite this, a uniform program will not address each person’s

particular needs, so there will be processes incorporated to the intervention to allow for

specific individualization of the program to address those differences.

Performance Objectives

Adhering to a gluten-free diet requires the performance of several steps and the

ability to adapt those steps to apply in a variety of settings. The performance objectives

listed below are derived from descriptions of adherence behaviors in See and Murray

(2008) and Simons, Weiss, Furlong, and Sicherer (2005). Additional steps were added

based on personal experience working in a restaurant with celiac guests, as well as

purchasing and preparing gluten-free and allergen-free food for others. Generally speaking,

celiac patients must plan ahead, identify resources, identify safe sources of food, determine

the gluten content of food, determine the likelihood of cross-contamination, and utilize


Final ExamFall 2012

resources, in addition to the typical behaviors needed when eating or preparing to eat (See

& Murray, 2006; Simons et al., 2005). The performance objectives below serve as

preliminary outlines of the behaviors necessary to successfully complete the behavioral

outcomes mentioned previously; however, additional data is needed to assess the validity

of these outcomes. In-depth interviews with adherent celiac patients regarding the

processes used to achieve adherence could be a potential method to determine validation.

Behavioral Objective 1: Purchase only gluten-free food at the grocery store every timeP.O.1.A: Decide to go grocery shoppingP.O.1.B: Make a list of needed gluten-free foodsP.O.1.C: Select a grocery store with gluten-free optionsP.O.1.D: Go to selected grocery storeP.O.1.E: Bring gluten-free resource, if neededP.O.1.F: Locate gluten-free items on listP.O.1.G: Check ingredient list to verify gluten-free statusP.O.1.H: Ask grocery store staff for assistance with locating items or determining gluten-free status, if neededP.O.1.I: Pay for itemsP.O.1.J: Bring items home and store as directed

Behavioral Objective 2: Eat only gluten-free food at home every timeP.O.2.A: Decide to make foodP.O.2.B: Review trusted sources of information to find a gluten-free recipeP.O.2.C: Select a gluten-free recipe to makeP.O.2.D: Collect ingredients to make desired foodP.O.2.E: Check ingredient lists to verify gluten-free status of ingredientsP.O.2.F: Collect cooking equipment needed to prepare foodP.O.2.G: Determine potential for gluten contamination of cooking equipment and workspaceP.O.2.H: Clean equipment and workspace as needed with warm soapy waterP.O.2.I: Prepare food as directedP.O.2.J: Eat prepared food


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Behavioral Objective 3: Eat only gluten-free food at friends' or family members' homes every timeP.O.3.A: Decide to eat at friends' or family members' homeP.O.3.B: Inform meal preparer of dietary requirements in advanceP.O.3.C: Provide trusted sources of information about the gluten-free diet or gluten-free recipes to meal preparerP.O.3.D: Ask meal preparer if food is gluten-freeP.O.3.E: Ask meal preparer about potential sources of cross-contaminationP.O.3.F: Check ingredient labels if unsure of food's gluten contentP.O.3.G: Only eat foods known to be gluten-free and with little chance of cross-contamination

Behavioral Objective 4: Eat only gluten-free food at restaurants every timeP.O.4.A: Decide to eat outP.O.4.B: Select a restaurant with gluten-free optionsP.O.4.C: Go to selected restaurantP.O.4.D: Bring gluten-free resource, if neededP.O.4.E: Ask restaurant staff if there are gluten-free options availableP.O.4.F: Select menu item to eatP.O.4.G: Identify potential sources of gluten in selected menu itemP.O.4.H: Ask restaurant staff to address any gluten sources in selected menu itemP.O.4.I: Ask restaurant staff to address any potential for cross-contaminationP.O.4.J: Confirm order and gluten-free status upon food's arrivalP.O.4.K: Only eat foods specified to be gluten-free with little chance of cross contaminationP.O.4.L: Pay for food

Environmental agents—such as friends, family, and restaurant and grocery store

employees—must also employ many of the performance objectives listed above when

providing food for a celiac patient. Such objectives include identifying sources of gluten,

identifying sources of cross-contamination, identifying resources, and utilizing resources

(See & Murray, 2006; Simons et al., 2005). Additionally, environmental agents must also

perform typical tasks (such as adding new foods to their selection, increasing visibility of

featured items, and addressing customer questions) but must tailor those behaviors to the


Final ExamFall 2012

specific needs of the celiac patient. The environmental performance objectives listed below

are derived from the descriptions of behaviors found in See and Murray and Simons et al.,

as well as purchasing and preparing gluten-free and allergen-free food to others, and

personal experience working in a restaurant. Again, additional measures should be taken to

assess the validity of these preliminary performance objectives. In-depth interviews with

grocery store and restaurant employees regarding processes needed to increase

availability and visibility of gluten-free products, and addressing customer concerns is a

potential method for validation. Additionally, in-depth interviews with friends and family

members of celiac patients who prepare gluten-free food could also address the validity of

performance objectives.

Environmental Behavioral Objective 1: Grocery store product manager will increase number of gluten-alternative foods available at grocery storeE.P.O.1.A: Decide to increase number of gluten-alternative foods availableE.P.O.1.B: Assess current product availabilityE.P.O.1.C: Discuss desired products with customersE.P.O.1.D: Ask distributor about desired gluten-alternative productsE.P.O.1.E: Order available desired gluten-alternative productsE.P.O.1.F: Place products in clearly visible location to sellE.P.O.1.G: Continue to order popular gluten-alternative products

Environmental Behvavioral Objective 2: Grocery store manager will increase visibility of gluten-alternative foods at grocery storeE.P.O.2.A: Decide to increase visibility of gluten-alternative foodsE.P.O.2.B: Identify gluten-alternative foods in storeE.P.O.2.C: Review store layout to determine ideal layoutE.P.O.2.D: Assign workers to reorganize store to ideal layoutE.P.O.2.E: Assign workers to shelve gluten-alternative products with gluten-free label clearly visible, if presentE.P.O.2.F: Add additional signage to draw attention to gluten-alternative foods


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Environmental Behavioral Objective 3: Grocery store manager will increase visibility of naturally gluten-free foodsE.P.O.3.A: Decide to increase visibility of naturally gluten-free foodsE.P.O.3.B: Identify naturally gluten-free foods in storeE.P.O.3.C: Add additional signage to draw attention to gluten-free status

Environmental Behavioral Objective 4: Grocery store workers will assist customers shopping for gluten-free foods at grocery storeE.P.O.4.A: Listen to customer questionsE.P.O.4.B: Direct customer to specific gluten-free item in question or to section with gluten-free foodE.P.O.4.C: Provide customer with gluten status of specific productE.P.O.4.D: Ask supervisor for assistance, if needed

Environmental Behavioral Objective 5: Restaurant manager will increase number of gluten-free menu items at restaurantE.P.O.5.A: Decide to increase number of gluten-free menu itemsE.P.O.5.B: Assess current availability of gluten-free menu itemsE.P.O.5.C: Discuss desired menu changes with customersE.P.O.5.D: Work with kitchen manager to substitute gluten in menu items with gluten-alternative versionE.P.O.5.E: Work with kitchen manager to create new gluten-free menu itemsE.P.O.5.F: Check ingredients to determine gluten-free statusE.P.O.5.G: Add new offerings to menu

Environmental Behavioral Objective 6: Restaurant manager will increase visibility of gluten-free options at restaurantE.P.O.6.A: Decide to increase visibility of gluten-free menu itemsE.P.O.6.B: Identify gluten-free menu itemsE.P.O.6.C: Add additional symbols or descriptions to menu to point out gluten-free status, or create separate gluten-free menuE.P.O.6.D: Add additional signage to restaurant to inform customers of availability of gluten-free options


Final ExamFall 2012

Environmental Behavioral Objective 7: Restaurant servers will assist guests asking about gluten-free options at restaurantE.P.O.7.A: Listen to guest questionsE.P.O.7.B: Direct customer to gluten-free menu or menu itemsE.P.O.7.C: Determine gluten status of ordered itemsE.P.O.7.D: Inform food preparer of gluten-free needsE.P.O.7.E: Ask food preparer if final product is gluten-freeE.P.O.7.F: Provide gluten-free meal to customer

Environmental Behavioral Objective 8: Food preparers at restaurant will prepare gluten-free foodsE.P.O.8.A: Identify need for gluten-free foodE.P.O.8.B: Determine gluten-status of ordered itemE.P.O.8.C: Discus alternatives with server if not gluten-freeE.P.O.8.D: Wash handsE.P.O.8.E: Collect needed materials for mealE.P.O.8.F: Determine potential for gluten-contamination of equipment and ingredientsE.P.O.8.G: Wash or replace contaminated equipment and workspace, if neededE.P.O.8.H: Prepare gluten-free food separate from potential gluten contaminantsE.P.O.8.I: Provide gluten-free meal to server for delivery

Environmental Behavioral Objective 9: Friends and family of CD patients will provide gluten-free food for CD friends and family who are visitingE.P.O.9.A: Decide to make food for CD guestE.P.O.9.B: Review trusted sources of information to find a gluten-free recipeE.P.O.9.C: Select a gluten-free recipe to makeE.P.O.9.D: Collect ingredients to make desired foodE.P.O.9.E: Check ingredient lists to verify gluten-status of ingredientsE.P.O.9.F: Collect cooking equipment needed to prepare foodE.P.O.9.G: Determine potential for gluten contamination of cooking equipment and workspaceE.P.O.9.H: Clean equipment and workspace as need with warm soapy waterE.P.O.9.I: Prepare food as directedE.P.O.9.J: Serve gluten-free food to guest


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Individual Health Promoting Determinants

Sainsbury and Mullan’s (2011) study is the only one found that has purposely

applied theoretical constructs to gluten-free diet adherence in celiac disease. The

researchers used the Theory of Planned Behavior as a model for adherence; however, this

model does not provide much insight into intervention development (Glanz, Rimer, &

Viswanath, 2008). As such, constructs from Social Cognitive Theory will also be used to

describe the health promoting behaviors. Because of the limited availability of theory-

based studies on celiac disease, diabetes self-management studies have also been included.

Much like celiac patients, diabetics must be cognizant of their dietary intake and may

perform similar behaviors, such as label reading, identifying resources, and utilizing

resources (Al-Khawaldeh, Al-Hassan, & Froelicher, 2012; Wu, Courtney, Edwards,

McDowell, Shortridge-Baggett, & Chang, 2007; McCleary-Jones, 2011; Lowe, Linjawi,

Mensch, James, & Attia, 2008). Additional data may need to be collected in the target

population to determine the validity of these determinants. Questionnaires such as the

Diabetes Management Self-Efficacy Scale (DMSES) and the Summary of Diabetes Self-Care

Activities (SDSCA) could be adapted for a celiac population (Al-Khalwaldeh, Al-Hassan, &

Froelicher; Wu et al.; McCleary-Jones), as well as other existing tools such as a food

ingredient quiz (Leffler et al., 2008) could be used to assess the determinants of the target

population.

Self-Efficacy

Self-efficacy is defined as the internal belief that an individual can successfully

perform a specific behavior to achieve a desired result (Glanz, Rimer, & Viswanath, 2008).


Final ExamFall 2012

Bandura (2004) found that self-efficacy is an important determinant in health-promoting

behaviors in general, and in self-management behaviors in particular. See and Murray

(2006) found that as celiac patients became more confident, they were better able to

adhere to a gluten-free diet, especially in situations outside the home. Al-Khawaldeh, Al-

Hassan, and Froelicher (2012), Wu et al. (2007), McCleary-Jones (2011), and Lowe et al.

(2008) also found better dietary adherence and self-care in diabetics with higher self-

efficacy.

Skills

Bandura (2004) described a significant connection between skills and self-efficacy.

He described skill building as necessary for increasing self-efficacy to perform a behavior.

See and Murray (2006) also identified label reading as a needed skill to adhere to a gluten-

free diet. Al-Khawaldeh, Al-Hassan, and Froelicher (2012) and Low et al. (2008) also

identified self-management skills as necessary for behavior change.

Knowledge

Knowledge is a core determinant of Social Cognitive Theory, and sets the stage for

behavior change (Bandura, 2004). See and Murray (2006) also described knowledge as an

important facet of gluten-free diet adherence. Furthermore, better knowledge of

diabetes self-care was associated with better dietary adherence and health outcomes in

diabetics (Al-Khawaldeh, Al-Hassan, & Froelicher, 2012; Wu et al., 2007; McCleary-Jones,

2011, Lowe et al., 2008).


Final ExamFall 2012

Outcome Expectations

Outcome expectations are defined as the anticipated positive or negative products

of a behavior (Bandura, 2004). Outcome expectations are closely related to self-efficacy, as

confidence in one’s abilities can affect the anticipated result of those abilities (Bandura).

See and Murray (2006) found positive outcome expectations regarding gluten-free diet

effectiveness to be an important factor in adherence. Additionally, Al-Khawaldeh, Al-

Hassan, and Froelicher (2012) and Wu et al. (2007) found that diabetics with better

outcome perceptions also had better self-care behaviors.

Environmental Determinants

Very little research has been done on interventions at the individual level for celiac

disease (Sainsbury and Mullan, 2011), and even less has been researched at the

environmental level. However, many of the performance objectives of the environmental

agents are similar to those of the individual, as mentioned previously. This suggests that

the environmental agents will also need self-efficacy, skills, knowledge, and outcome

expectations to successfully create changes in the environment.

Nonetheless, the environmental agents do not reap the benefits of positive health

outcomes and increased quality of life that celiac patients receive through adherence. As

such, those environmental agents facilitating adherence may need some additional

motivation to achieve their performance objectives, and so attitudes have also been added

to their determinants. Attitudes are defined as the overall positive or negative opinion of

performing a behavior (Glanz, Rimer, & Viswanath, 2008). Bandura (2004) added that

attitudes describe how an individual feels about the expected outcomes (i.e., a grocery


Final ExamFall 2012

store manager believes increasing gluten-free products will increase a celiac patient’s

adherence to a gluten-free diet, and that adherence is both a positive and important). See

and Murray (2006) also stated that a positive attitude from providers was important for

adherence. While friends and family, and grocery store and restaurant employees play a

very different role than a healthcare worker, the concept of a positive attitude may still be

applicable because those situations still have an expectation of customer service, loyalty, or

other care providing behaviors.


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Change Objectives


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Final ExamFall 2012

Methods and Applications

Only three gluten-free diet interventions were found using celiac patients (Murray,

Watson, Clearman, & Mitros, 2004; Meyer, Fasshauer, Nebel, & Paschke, 2004; Jacobsson,

Friedrichsen, Göransson, & Hallert, 2012), two of which did not provide any indication of

long-term effects (Meyer et al.; Jacobsson et al.). The third intervention gave standard

dietary advice after diagnosis and measured the adherence six months later, so it will be

considered a baseline measurement for comparing intervention effectiveness (Murray et

al.). Furthermore, none of these studies were based in theory, and as such they are not ideal

models to emulate.

Despite this, Bartholomew et al. (2011) provide an extensive list of effective

methods for health behavior change, several of which are applicable to this intervention.

Persuasive communication is defined as the use of arguments and other strategies to

produce a change in an individual’s or agent’s attitude or behavior (Bartholomew et al.).

Bandura (2004) also recommends using persuasive communication, and See and Murray

(2006) suggest that discussing the benefits and consequences of adherence/non-adherence

would be beneficial in creating behavior change. Persuasive communication could also be

used with environmental agents. Case (2005) argues that the gluten-free diet market will

be worth $5 billion in the United States by 2015. Additionally, Watson (2009) suggests that

providing gluten-free products would provide positive exposure for businesses. These

messages could be aimed at grocery stores and restaurants looking to make a profit while

also supporting the needs of community members.


Final ExamFall 2012

Bartholomew et al. (2011) define active learning as a goal-oriented and activity-

based situation, which promotes learning. Bandura (2004) also found that learners who

are actively engaged with the material see a greater impact than those who are learning

passively. Al-Khawaldeh, Al-Hassan, and Froelicher (2012) used active learning processes

successfully in their diabetes intervention. Possible applications of active learning could

include interactive workshops on cooking and shopping for gluten-free food, role-playing

meal scenarios, and supervised meal experiences. Environmental agents could also

participate in interactive workshops for cooking, customer service, and availability and

visibility of gluten-free products.

As mentioned previously, no two celiac patients have the exact same needs. As such,

it is important to individualize their program experience to address their specific needs.

Bandura (2004) also recommends individualization, but warns against tailoring program

pieces to irrelevant factors, which could be a waste of time and money. Duca (2009) also

recommends personalizing resources to address the specific needs of the patient.

Individualization could be applied using one-on-one dialogue with dieticians and peer

mentors, both with celiac patients and environmental agents.

Modeling is defined as using a person (or agent) as an example to reinforce desired

outcomes (Bartholomew et al., 2011). Modeling has been shown to improve self-efficacy

and skills; however, it is important that participants find the model relatable and that the

model also expresses a degree of struggle (Bartholomew et al.). Celiac patients could be

paired with successful adherers, and could also hear personal testimony from other


Final ExamFall 2012

successful patients. Likewise, environmental agents could benefit from model businesses,

employees, and friends and family of celiac patients.

Bartholomew et al. (2011) define feedback as providing information regarding the

degree of success achieved in a behavior or level of influence. Lowe et al. (2008) provided

feedback to diabetics on their self-management, which led to better self-care. Peer mentors

and dieticians can provide feedback during interactive activities, as well as during one-on-

one assessments of progress. Dieticians can also provide feedback to grocery stores and

restaurants regarding their efforts to increase availability and visibility of gluten-free food.

Model business contacts can also provide feedback on customer service behaviors, while

model food preparers and dieticians can provide feedback during cooking workshops.

Facilitation is defined as making changes in the environment to make desired

behaviors easier to achieve (Bartholomew et al., 2011). Social Cognitive Theory encourages

change on a higher level than the individual (Bandura, 2004), and increasing visibility and

availability of gluten-free products are examples of facilitation applications.

Discussion is another method that can be used to increase participant knowledge.

Discussion creates an informal debate situation for participants to contemplate new ideas

(Bartholomew et al., 2011). Possible discussion points could include “tips and tricks” to

adherence for individuals, or “tips and tricks” to achieve behavioral outcomes for

environmental agents.

Elaboration is defined as creating meaning for information provided through

stimulation (Bartholomew et al., 2011). Bartholomew et al. recommend using clear,

applicable, and unexpected messages to facilitate knowledge increase. Possible messages


Final ExamFall 2012

could include hidden sources of gluten for individuals, and personal benefits to behavioral

outcomes for environmental agents.

Arguments go hand-in-hand with persuasive communication, and provide novel

information as a means to create changes in attitude and outcome expectations

(Bartholomew et al., 2011). Possible arguments to promote adherence in individuals could

be some of the lesser-known benefits to adherence, such as increased fertility (Reilly &

Green, 2012; O’Donnell & Edelstein, 2009; Butterworth et al., 2004; Autodore, Verma, &

Gupta, 2012; Ukkola et al., 2012), better and more frequent sex (Haines, Anderson, &

Gibson, 2008); improved dental enamel (Autodore, Verma, & Gupta), reduced hair loss

(Gainer, 2011), better skin (O’Donnell & Edelstein; Autodore, Verma, & Gupta), and

increased energy (Haines, Anderson, & Gibson). Arguments for environmental agents could

include such benefits as increases in sales, success of other businesses who have increased

visibility and availability of gluten-free foods, and how the individual or business can be

part of the solution.

Bartholomew et al. (2011) define guided practice as behavior rehearsal with

opportunities for feedback and discussion. This may also include modeling, active learning,

and feedback (Bartholomew et al.). Examples of guided practice applications could include

interactive workshops, role-playing, and supervised food experiences, as mentioned

previously, for both the individual and the environmental agents.

Additionally, there are methods specific to the environmental agents, such as

participatory problem solving. Community-based participatory research is a growing field

in health promotion, and allows environmental agents (as well as individuals) to


Final ExamFall 2012

participate in creating the programs (Bartholomew et al., 2011). Business contacts and

food preparers could both collaborate with the health promoter to determine possible

programs for increasing availability, visibility, and customer service, as well as how to

safely and effectively prepare gluten-free food.

Another method aimed at the environmental agents would be to provide contingent

rewards, which provide encouragement or recognition of achievement (Bartholomew et al.,

2011). Participant businesses that satisfactorily complete the program will be allowed to

use the program logo and display certification on their marketing, menus, and signage.

Finally, technical assistance facilitates behavioral outcomes through technical

resources (Bartholomew et al., 2011). Possible applications of technical assistance could

include a dietician hotline for individuals and businesses with questions regarding celiac

disease and the gluten-free diet, or a gluten-free diet guidebook for the same purposes.

Below are tables of potential methods and applications to be utilized in the

intervention, divided by behavioral outcomes and environmental outcomes. Further

investigation of these methods and applications may be needed to determine their

potential effectiveness. Such investigation could include interviews and collaboration with

potential program participants, or a pilot study using limited participants.


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Program Description, Scope and Sequence, and Design Document

The proposed program will consist of four different components, each in two parts.

The components will be the grocery store certification program, the restaurant certification

program, the celiac patient education program, and the friends and family of celiac patients

education program. Each component will include an initial Core Certification or Core

Education program for role models (known as Core Models) in each component, followed

by the standard certification or standard education programs, which will incorporate the

Core Models into the curriculum. Because the Core Certification and Core Education

programs will be the first round of the program and will include a smaller number of

participants, these pieces will also be used to pilot test the program. The program will be

known as the Gluten-Free Friend program, or the GFF program for short. This abbreviation

is a play on BFF (short for Best Friends Forever), which will be suggestive of the

supportive, friendly atmosphere this program aims to create for celiac patients. GFF-

certified grocery stores and restaurants, as well as Core Models for celiac patients and their

friends and families, will be identified as GFFs, to suggest that they are supportive friends

of the celiac community.

The grocery store certification program will include two education sessions (one for

management and one for other staff), followed by three or more mystery shopper

assessments. A dietician will lead the education sessions, and one or more Grocery Store

Core Models will assist during the standard certification program (Phase 2: Grocery Store

Certification). The management education session (Sessions 1.1, 2.1) will provide

education on celiac disease and the gluten-free diet, an assessment of the grocery store’s


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availability and visibility of gluten-free products, and a workshop to develop an action plan

to improve availability and visibility. This session is expected to take 1-2 days, depending

on the size and format of each grocery store. Lee et al. (2007) and Singh and Whelan (2011)

have performed assessments on availability of gluten-free products in grocery stores;

however, their assessments were narrower and did not explicitly state the time allotted to

the assessment in each grocery store, so the actual time frame for this process may need to

be revised during the pilot-testing phase (Phase 1: Core Grocery Store Certification).

The employee education session (Sessions 1.2, 2.2) will provide education on celiac

disease and the gluten-free diet, address changes the store is making to improve

availability and visibility, gluten identification tactics, customer service strategies, and a

certification exam. This session is expected to take approximately 4 hours; however, this

will be revised as needed during the pilot-testing phase (Phase 1). At least 50 percent of

grocery store employees will need to attend an education session; however, a grocery store

could hold several sessions to meet this criterion, if desired. Additionally, 100 percent of

attendees must pass the certification exam with a 90 percent or higher; however,

employees are allowed to re-take the exam once per day until they pass.

After the education sessions, the grocery store will implement the changes in the

action plan and participate in mystery shopper assessments (Sessions 1.3-1.5+, 2.3-2.5+).

In each assessment, the unidentified shopper will attempt to purchase gluten-free food

from the grocery store. The shopper will assess the availability and visibility of gluten-free

products, as well as the perceived knowledge and helpfulness of the staff. The grocery store

must pass three consecutive mystery shopper assessments before it becomes GFF-certified.


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Additionally, grocery stores that have food preparation components (similar to a

restaurant), will need to have those departments go through the restaurant certification

program to be included in the certification. See Tables 1 and 2 for more details.

The restaurant certification program will be very similar to the grocery store

certification program; however it will be tailored to address the unique needs of a

restaurant, such as food preparation. Again, there will be two education sessions (one for

management and one for other staff), followed by three or more mystery shopper

assessments. A dietician will lead the education sessions, with the assistance of one or

more Restaurant Core Models during the standard certification program (Phase 4:

Restaurant Certification). The management education session (Sessions 3.1, 4.1) will

include education on celiac disease and the gluten-free diet, a restaurant assessment, and a

workshop to develop an action plan to improve availability and visibility of gluten-free

menu items. This session is expected to take 1-2 days, depending on the size and format of

the restaurant; however this time frame may be adjusted during the pilot-testing phase

(Phase 3: Core Restaurant Certification). The staff education session (Sessions 3.2, 4.2) will

include education on celiac disease and the gluten-free diet, address changes to increase

availability and visibility of gluten-free menu items, gluten identification tactics, customer

service strategies, and a certification exam. This session is expected to take approximately

4 hours, but may be adjusted during the pilot-testing phase (Phase 3). At least 75 percent of

restaurant staff will need to attend an education session. This participation rate is higher

than the grocery store because restaurant employees have a more direct impact on celiac


Final ExamFall 2012

patients’ food. Additionally, 100 percent of the attendees must pass the certification exam

with a score of 90 percent or higher.

Following the education sessions, the restaurant will implement the changes in the

action plan and participate in three or more mystery shopper assessments (Sessions 3.3-

3.5+, 4.3-4.5+). In each assessment, an unidentified customer will attempt to order a

gluten-free meal from the restaurant. The shopper will assess the availability and visibility

of gluten-free menu items, as well as the perceived knowledge and helpfulness of the staff.

The restaurant must pass three consecutive assessments before it will be GFF-certified. See

Tables 3 and 4 for more details.

The celiac patient training program will consist of 12 weekly education workshops.

These workshops are expected to be approximately 2 hours in duration each; however, this

may be adjusted during the pilot-testing phase (Phase 5: Core Celiac Patient Training

Course). A dietician will lead these workshops, with the assistance of one or more Celiac

Core Models during the standard celiac training program (Phase 6: Celiac Patient Training

Course). Topics covered will include education about celiac disease and the gluten-free

diet, gluten identification tactics (Sessions 5.1, 6.1), shopping for gluten-free products

(Sessions 5.2-5.4, 6.2-6.4), preparing gluten-free food (Sessions 5.5-5.7, 6.5-6.7), eating

gluten-free food with friends and family (Sessions 5.8-5.9, 6.8-6.9), and eating gluten-free

food at restaurants (Sessions 5.10-5.12, 6.10-6.12). Most topics will include a problem-

solving discussion, a demonstration of the activity by the dietician, and opportunities for

the participants to role-play and/or practice the activity in real-life settings. The dietician


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and Core Models will observe the participants in these activities and give feedback. See

Tables 5 and 6 for more details.

The friends and family training program will consist of a two-day education

workshop. Each day will be approximately 6 hours in duration; however this may be

adjusted as needed during the pilot-testing phase (Phase 7: Core Friends and Family

Training Course). A dietician will lead the education program, with the assistance of one or

more Friends and Family Core Models during the standard training program (Phase 8:

Friends and Family Training Course). The friends and family program will loosely follow

the curriculum of the Celiac Patient Training Course; however, it will be individualized to

meet the unique needs of the celiac patients’ friends and family. The program will include

education on celiac disease and the gluten-free diet, gluten identification tactics, shopping

for gluten-free products (Sessions 7.1, 8.1), preparing gluten-free food, and support

strategies (Sessions 7.2, 8.2). Most topics include a problem-solving discussion, a

demonstration of the activity by the dietician, and opportunities for the participants to

role-play and/or practice the activity in real-life settings. The dietician and Core Models

will observe the participants in these activities and give feedback. See Tables 7 and 8 for

more details.


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Table 1Phase 1: Core Grocery Store Certification


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Table 2Phase 2: Grocery Store Certification


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Table 3Phase 3: Core Restaurant Certification


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Table 4Phase 4: Restaurant Certification


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Table 5Phase 5: Core Celiac Patient Training Course


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Table 6Phase 6: Celiac Patient Training Course


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All participants in the program will have access to resources to help them identify

gluten-containing and gluten-free foods. These resources include a gluten-free guidebook, a

dietician hotline, and a gluten-free database accessible via a website and via an iPhone app.

Table 8Phase 8: Friends and Family Training Course


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The guidebook will be The Essential Gluten-Free Grocery Guide and The Essential Gluten-

Free Restaurant Guide (Triumph Dining, 2012). These guidebooks include popular food and

restaurant brands that cater to gluten-free needs. The dietician hotline will be a dietician-

staffed phone line. Participants can call during business hours and ask celiac- and gluten-

free-diet-related questions.

The gluten-free database will be an extensive, searchable catalogue of food

products, ingredients, grocery stores and restaurants. Each food item entry (including

restaurant menu items) will be color-coded using a stoplight theme (Green: No known

gluten, safe to eat; Yellow: Sometimes contains gluten or gluten content unknown, seek

additional information; and Red: Known gluten, unsafe to eat). Additionally, food items can

be user-reviewed. Grocery store and restaurant entries will include contact information,

user reviews, and product availability or menus. The database will be accessible through a

website and an iPhone app, and will require login, so only program participants can access

the information. A design document for the iPhone app can be found in Figure 1.

The GFF program will complete its initial run over the course of one year. During the

first three months, Core Grocery Stores will be trained and certified (Phase 1). Standard

Grocery Store Certification (Phase 2) will begin during Month 4 and will continue through

the duration of the program. Core Restaurants will be trained and certified (Phase 3)

during Months 4-6, and standard Restaurant Certification (Phase 4) will begin during

Month 7 and continue through the duration of the program. Core Celiac Patient Training

(Phase 5) and Core Friends and Family Training (Phase 7) will occur during Months 7-9,

and standard Celiac Patient


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Training (Phase 6) and Friends and Family Training (Phase 8) will occur during Months 9-


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12. This phase sequence was established to create a building block effect for the

intervention. Grocery stores will be certified first because both restaurants and individuals

may use the grocery stores to purchase gluten-free foods, so ensuring availability, visibility,

and knowledgeable staff in the grocery stores is the first step to successful subsequent

phases. Additionally, individuals may also purchase gluten-free meals from restaurants, so

ensuring availability, visibility, and knowledgeable staff in restaurants will lay the

groundwork for successful celiac patient training programs. Celiac patient and friends and

family programs will run concurrently to foster a shared experience between the celiac

patient and their support network. Verbestel et al. (2011) designed a multi-level

intervention aimed at preventing childhood obesity, and included a similar sequence of

community changes followed by individual curriculum. See Table 9 for more details.

Table 9GFF Program Sequence

Pretesting

The GFF program will go through several rounds of pretesting to ensure that the

intended message is easy to understand and well received. First, the gluten-free database

will be tested for readability for all types of program participants. This type of testing will


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determine if the information presented in the database is at an appropriate level where

participants who are very familiar with the gluten-free diet and those that are less familiar

will be able to comprehend and utilize the tool (Bartholomew et al., 2011). Potential

participants will be given a brief introduction to the database, then they will be asked to

use certain aspects of it. Afterwards, they will be asked about the usability and

understandability of the database. Possible questions could include:

• Find your favorite food and determine if it is gluten-free.

• Find a menu for your favorite restaurant and identify a gluten-free menu item, if available.

• Find your grocery store and create a user review.

• On a scale of 1-5 (1=extremely poor, 5=extremely good), how would you rate your

understanding of the information in the database?

• What are the features you like about the database?

• What features would you change about the database?

The results would then be used to make changes to the database to improve

satisfaction and usability. For example, users could prefer that gluten-free items are listed

before non-gluten-free items in a restaurant menu so they are easier to find, so the app

developer could go back and make that change before the full program launch.

Next, the GFF program would test the program message. Potential participants

would be invited to short seminars that would include part of the curriculum for that

group. Following the seminar, pretesting participants would take part in a focus group to

discuss the message and set-up of the program component (Bartholomew et al., 2011).

Possible questions could include:


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• Was the information in the program relevant to you? Why or why not?

• Did the program present you with the tools you need to make desired changes? What

other tools might be helpful?

• What did you like about the program?

• What would you change?

These results then would be used to modify the program curriculum to make it

more understandable, desirable, and relevant to the program participants (Bartholomew et

al., 2011).

After the overarching message of the GFF program met participant approval, pilot

testing would begin, as discussed in the previous section. Each program component would

be implemented (without the role model component, but otherwise intact), for a small

group of participants. At the end of each program, participants would be invited to

participate in an anonymous online survey regarding the program. Because the Core Celiac

Training Course (Phase 5) takes place over the course of 3 months, those participants

would fill out the survey after Sessions 5.4, 5.8, and 5.12. Possible survey questions could

include:

• What part of the program was most beneficial to you?

• What part of the program would you get rid of?

• Were the presenters easy to understand? What could be done to make improvements?

• Do you feel prepared to make desired changes in your life/workplace?

• Was enough time given on each topic? Which topics would you like to spend more time

on, and which would you like to spend less time on?


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The results of the pilot-testing surveys would be used to adapt the program

curriculum for the standard certification and training programs so that it better meets the

needs of the participants.

Cultural Competence

Munir, Pryce, Haslam, Leka, and Griffiths (2006) found that women were slightly

more likely than men to disclose their irritable bowel syndrome to their employer.

Additionally, Sverker, Hensing, and Hallert (2005) found that men were more likely than

women to eat gluten to avoid disclosure of their disease status to friends. As such, it may be

necessary to tailor disclosure discussions to the gender of the participant. The GFF

program provides opportunities for celiac participants to discuss disclosure methods that

have been effective for them previously and also allows participants to role play disclosure

scenarios in a variety of situations, including with friends and family, at restaurants, and at

the grocery store. This way, participants can practice a technique that is comfortable for

them in a safe and constructive environment. Additionally, restaurant and grocery store

employees, as well as friends and family, will be trained to be respectful of celiac patients’

privacy.

As mentioned previously, Houston has a diverse racial and ethnic population,

including over 900,000 residents who identified as Hispanic or Latino, over 500,000

residents who identified as Caucasian (non-Hispanic), nearly 500,000 who identified as

Black or African American (non-Hispanic or Latino), and over 100,000 who identified as

Asian (non-Hispanic) (U.S. Census Bureau, 2010). With such a diverse culture comes a wide

range of tastes and food preferences. As such, it will be important to include restaurants


Final ExamFall 2012

and grocery stores that specialize in ethnic foods, such as an Asian grocery store or a

Mexican restaurant. These types of specialty stores will also need information about the

gluten content of the types of food they provide, so the dieticians presenting the program

will need to be knowledgeable about many different cuisines.

Houston residents also have a wide range of income levels, with approximately 16

percent of families living below the poverty line (U.S. Census Bureau, 2010). Program

implementers will need to include grocery stores and restaurants that cater to a wide price

range, including fast food restaurants, corner stores, high-end health food stores, and

gourmet restaurants. Celiac patient and friends and family workshops will also need to

include meal planning for large and small food budgets.

Planning Group, Revisited

The proposed planning group includes a wide variety of stakeholders, including

celiac patients, doctors, dieticians, grocery stores, restaurants, celiac organizations, the

health department, health educators, researchers, and funders. Within each grouping there

will be wide representation from different demographics such as gender, age,

race/ethnicity/cuisine, income/price-range, etc. Each of these stakeholders will play an

important role in the proposed GFF program. Celiac patients, grocery stores, and

restaurants will all be potential participants and models in the program; dieticians will be

the primary leaders of the program components; doctors, the health department, and celiac

organizations are ideal recruitment partners; and the health educators, researchers, and

funders will play a direct role in program development and evaluation.


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In addition to this group, friends and family of celiac patients should also be

included because they will be potential participants in the program. These stakeholders can

give insight into how celiac disease and gluten-free diet adherence affects situations at the

family or social level. A dietetic organization, such as the Houston Academy of Nutrition

and Dietetics (www.eatrighthouston.org, 2012), could also be added to the planning group,

because they could be a potential program adopter or implementer. Another possible

group to include would be people who choose to adhere to a gluten-free diet but are not

diagnosed with celiac disease. These people may also be interested in participating in the

program if it is successful and could provide a unique perspective on the GFF components.

Adoption, Implementation, and Maintenance Performance Objectives

In order for the GFF program to have a long-lasting success, the program must be

indoctrinated into an organization that will have an expressed interest in and adequate

resources to continue it. Possible organizations that could do this in Houston might be the

Houston Celiac Support Group (www.houstonceliacs.org, 2012) or the Houston Academy of

Nutrition and Dietetics (www.eatrighthouston.org, 2012). Below are performance

objectives for adoption, implementation, and maintenance of the GFF program (Tables 10,

11, and 12):

Table 10Adopter Performance Objectives


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Table 11Implementer Performance Objectives

Table 12Maintenance Performance Objectives

Adoption and Implementation Matrices

Table 13GFF Program Adoption Matrix


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Table 14GFF Program Implementation Matrix

Adoption and Implementation Methods and Applications

Methods and applications are needed to create the changes desired in the program

adopters’ and implementers’ knowledge, skills, self-efficacy, attitudes, and outcome

expectations (Bartholomew et al., 2011). Below are proposed techniques to affect the

change objects listed in the above matrices (Table 15):


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Table 15Adopter and Implementer Methods and Applications

Program Evaluation

The GFF program will need to conduct evaluations during and after program

implementation to ensure that the program is successful. First, a process evaluation will

need to be conducted to determine if the program is being implemented with completeness

and fidelity (Rossi, Lipsey, & Freeman, 2004). For the process evaluation of the GFF

program, measures regarding the implementation of program activities, and changes in

determinants will need to be taken (See Figure 2). Methods for performing the evaluation

could include surveys, focus groups, or observation. As mentioned previously, participants

in each program component could be asked to participate in an anonymous online survey.

Possible questions could include:

• How many sessions did you attend?


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• Were you there for the whole session each time you attended?

• Were you given time to practice new skills learned during the session?

• Was the Core Model present?

• Did you receive feedback from the instructor while you were practicing a new skill?

• On a scale of 1-5 (1=not at all, 5=extremely), how confident are you that you could

prepare a gluten-free meal for yourself/a friend/a customer?

• On a scale of 1-5 (1=extremely negative, 5=extremely positive), what are your feelings

about increasing the visibility of gluten free products in your store/restaurant?

Evaluators could also observe program sessions to determine if the program is

being implemented with fidelity and completeness. One problem with this method is that

instructors may perform differently when they are being watched, so the evaluator may not

see the true implementation process (Rossi, Lipsey, & Freeman, 2004). Possible questions

to answer during observation could be:

• Is the instructor following the session curriculum?

• Is the instructor getting through the whole curriculum in the time allotted?

• Is the instructor introducing course materials, such as the gluten-free database or the

dietician hotline?

• Are the participants engaging in discussion at appropriate times? Is the discussion on

task?

Additionally, the dietician assessments at the grocery stores and restaurants, as well

as the mystery shopper assessments, can also be used to determine if a change has

occurred in a store’s availability and visibility of gluten-free products.


Final ExamFall 2012

After the program is completed, an outcome evaluation will need to be conducted to

determine if the program produced the intended results (Rossi, Lipsey, & Freeman, 2004).

The proposed outcome evaluation for the GFF program will be a quasi-experimental design

including three groups with a pretest and two posttests The first posttest will take place

four weeks after the intervention, and second will take place six months after the

intervention. The first group (Group 1) will consist of program participants in the Celiac

Patient Training Course. The second group (Group 2) will consist of future participants in

the Celiac Patient Training Course from the Houston area, who may have had interactions

with the GFF restaurant or grocery store certification programs. The participants in each of

these groups will be randomly assigned to either the first or second group. The final group

(Group 3) will include matched celiac patients from the Dallas/Ft. Worth area, who have

not been introduced to the GFF restaurant or grocery store certification program.

The evaluation participants will be asked to take the Celiac Dietary Adherence Test

(CDAT) both before and after the program (Leffler et al., 2009). The CDAT (shown in Table

16) is a 7-item questionnaire on a 5-point Likert scale, which is used to determine

adherence to a gluten-free diet in celiac patients. The benefits of the CDAT are that it is

inexpensive and quick to administer, and it also provides a more accurate estimate of

adherence than tissue transglutaminase serology. It is predicted that Groups 1 and 2 will

improve their CDAT scores from pretest to posttest, while Group 3 will maintain.

Additionally, Group 1 is predicted to have a significantly larger improvement than Group 2.


Final ExamFall 2012

Table 16CDAT Adherence Survey (Leffler et al., 2009)

Figure 2Evaluation Logic Model


Final ExamFall 2012

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Meyer, K. G., Fasshauer, M., Nebel, I. T., & Paschke, R. (2004). Comparative analysis of conventional training and a computer-based interactive training program for celiac patients. Patient Education and Counseling, 54, 353-360.

McCleary-Jones, V. (2011). Health literacy and its association with diabetes knowledge, self-efficacy and disease self-management among African-Americans with diabetes mellitus. The ABNF Journal, 22 (2), 25-32.

Munir, F., Pryce, J., Haslam, C., Leka, S., & Griffiths, A. (2006). Gender differences in managing chronic illness at work: Exploring predictors for disclosure. Journal of Vocational Rehabilitation, 25, 173-180.

Murray, J. A., Watson, T., Clearman, B., & Mitros, F. (2004). Effect of a Gluten-Free Diet on Gastrointestinal Symptoms in Celiac Disease. The American Journal of Clinical Nutrition , 79 (4), 669-673.

O'Donnell, B., & Edelstein, S. (2009). Dietitians' Perceptions of Adherence to a Gluten-Free Diet Among Low-Income Individuals with Celiac Disease. Topics in Clinical Nutrition , 24 (1), 82-89.

Pietzak, M. M. (2005). Follow-Up of Patients with Celiac Disease: Achieving Compliance with Treatment. Gastroenterology , 128 (4), S135-S141.

Reilly, N. R., & Green, P. H. (2012). Epidemiology and Clinical Presentations of Celiac Disease. Seminars in Immunopathology , 34, 473-478.

Riddle, M. S., Murray, J. A., & Porter, C. K. (2012). The Incidence and Risk of Celiac Disease in a Healthy US Adult Population. The American Journal of Gastroenterology , 107, 1248-1255.


Final ExamFall 2012

Rossi, P. H., Lipsey, M. W., & Freeman, H. E. (2004) Evaluation: A Systematic Approach. (7th ed.). Thousand Oaks, California, United States of American: Sage Publications, Inc.

Sainsbury, K., & Mullan, B. (2011). Measuring Beliefs About Gluten Free Diet Adherence in Adult Coeliac Disease Using the Theory of Planned Behavior. Appetite , 56, 476-483.

See, J., & Murray, J. A. (2006). Gluten-free diet: The medical and nutrition management of celiac disease. Nutrition in Clinical Practice, 21 (1), 1-15.

Shadix, K. (2006, April 3). Restauranteurs Respond to Growing Awareness of Celiac Disease. Nation's Restaurant News , 16.

Simons, E., Weiss, C. C., Furlong, T. J., & Sicherer, S. H. (2005). Impact of ingredient labeling practices on food allergic consumers. Annals of Allergy, Asthma & Immunology, 95, 426-428.

Singh, J., & Whelan, K. (2011). Limited Availability and Higher Cost of Gluten-Free Foods. Journal of Human Nutrition and Dietetics , 24, 479-486.

Smith, M. M., & Goodfellow, L. (2011). The Relationship Between Quality of Life and Coping Strategies of Adults with Celiac Disease Adhering to a Gluten-Free Diet. Gastroenterology Nursing , 34 (6), 460-468.

Stuckey, C., Lowdon, J., & Howdle, P. (2009). Symposium 1: Joint BAPEN and British Society of Gastroenterology Symposium on 'Coeliac Disease: Basics and Controversies' Dietitians Are Better than Clinicians in Following Up Coeliac Disease. Proceedings of the Nutritonal Scoiety , 68, 249-251.

Sverker, A., Östlund, G., Hallert, C., & Hensing, G. (2009). 'I Lose All These Hours...'—Exploring Gender and Consequences of Dilemmas Experienced in Everyday Life with Coeliac Disease. Scandinavian Journal of Caring Sciences , 23, 342-352.

Sverker, A., Hensing, G., & Hallert, C. (2005). 'Controlled by Food'—Lived Experiences of Coeliac Disease. Journal of Human Nutrition and Dietetics , 18, 171-180. BIBLIOGRAPHY Triumph Dining. (2012). Triumph Dining: Serving the Gluten-Free Community since 2005. Retrieved December 5, 2012, from Triumph Dining: http://www.triumphdining.com

U.S. Census Bureau. (2010). 2010 Demographic Profile by Age/Sex, Households and Housing Units: City of Houston. (C. o. Dept., Ed.) Retrieved September 2012, from City of Houston: http://www.houstontx.gov/planning/Demographics/demog_links.html

Ukkola, A., Mäki, M., Kurppa, K., Pekka, C., Huhtala, H., Leila, K., et al. (2012). Patients' Experiences and Perceptions of Living with Coeliac Disease—Implications for Optimizing Care. Journal of Gastrointestinal and Liver Diseases , 21 (1), 17-22.


Final ExamFall 2012

Verbestel et al. (2011). Using the intervention mapping protocol to develop a community-based intervention for the prevention of childhood obesity in a multi-centre European project: the IDEFICS intervention. International Journal of Behavioral Nutrition and Physical Activity, 8(82), 1-15.

Vilppula, A., Kaukinen, K., Luostarinen, L., Krekelä, I., Patrikainen, K., Valve, R., et al. (2011). Clinical Benefit of Gluten-Free Diet in Screen-Detected Older Celiac Disease Patients. BMC Gastroenterology , 11, 136.

Watson, E. (2009, July). No free ride. Health & Nutrition, 61-62.

Wu, S.-F. V., Courtney, M., Edwards, H., McDowell, J., Shortridge-Baggett, L. M., & Chang, P.-J. (2007). Self-efficacy, outcome expectations and self-care behaviour in people with type 2 diabetes in Taiwan. Journal of Clinical Nursing, 16 (11C), 250-257.

Zimmer, K.-P. (2011). Nutrition and Celiac Disease. Current Problems in Pediatric and Adolescent Health Care , 41, 244-247.

intervention mapping final paper

Documents

celiac organizations

adult celiac patients

adult celiac population

introduction celiac

health stores

stakeholder group

glutenfree diet adherence

glutenfree products