the impact of percutaneous endoscopic gastrostomy feeding upon quality of life in adults ailsa...
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The Impact of The Impact of Percutaneous Percutaneous Endoscopic Endoscopic
Gastrostomy Feeding Gastrostomy Feeding upon Quality of Life in upon Quality of Life in
AdultsAdults
Ailsa BrothertonAilsa BrothertonSenior Research Fellow Senior Research Fellow
Small group discussionsSmall group discussions
What is QoL?What is QoL? Define QoL in one sentenceDefine QoL in one sentence
Discuss the factors that are Discuss the factors that are important to your QoL.important to your QoL.
QoL QoL
QoL is a dynamic construct which is QoL is a dynamic construct which is constantly being negotiated by the constantly being negotiated by the individual in association with his/her individual in association with his/her environment and those around him. environment and those around him.
Health Related Quality of Life (HRQoL) Health Related Quality of Life (HRQoL)
Meaningful measure of the health related Meaningful measure of the health related issues associated with an individual’s QoL issues associated with an individual’s QoL e.g. measures of the impact of symptoms e.g. measures of the impact of symptoms and treatment interventions.and treatment interventions.
Introduction of the paperIntroduction of the paper
This paper is part of a larger research project This paper is part of a larger research project whichwhich::
• Included a pilot study to measure QoL of adult Included a pilot study to measure QoL of adult patients on a PEG using the SF36patients on a PEG using the SF36
• Developed a semi structured interview approach to Developed a semi structured interview approach to explore the issues and concerns of living with a explore the issues and concerns of living with a PEG and the impact upon daily life in 3 subgroups PEG and the impact upon daily life in 3 subgroups (adult patients, carers of adults, carers of children)(adult patients, carers of adults, carers of children)
• Compared the perceptions of health care Compared the perceptions of health care professionals with those of patients and their carersprofessionals with those of patients and their carers
• Developed a preliminary PEG QoL assessment toolDeveloped a preliminary PEG QoL assessment tool
BackgroundBackground• Very few studies have been reported that formally measure QoL Very few studies have been reported that formally measure QoL
in the PEG populationin the PEG population Loeser et al, 2003 assessed QoL by proxy rating and self-rating:Loeser et al, 2003 assessed QoL by proxy rating and self-rating: Karnofsky and Spitzer indices (purely functional scales)Karnofsky and Spitzer indices (purely functional scales) European Organization for Research and Treatment of Cancer European Organization for Research and Treatment of Cancer
[EORTC] QLQ C30 [EORTC] QLQ C30
Concluded: QoL is reduced in patients on HETF, partly explained Concluded: QoL is reduced in patients on HETF, partly explained by malnutrition. by malnutrition.
(Schneider et al, 2000;Roberge et al, 2000; Klose et al, 2003)(Schneider et al, 2000;Roberge et al, 2000; Klose et al, 2003)
• The available QoL measures are not specifically designed to The available QoL measures are not specifically designed to measure the impact of feeding on QoL and do not contain measure the impact of feeding on QoL and do not contain questions to determine this questions to determine this
• No known validated QoL assessment tools that have been No known validated QoL assessment tools that have been developed and validated specifically for patients with a PEGdeveloped and validated specifically for patients with a PEG
• Numerous methodological difficulties in measuring disease Numerous methodological difficulties in measuring disease specific health related QoLspecific health related QoL
(Abbott, Webb and Dodd, 1997, Abbott and Gee, 2003)(Abbott, Webb and Dodd, 1997, Abbott and Gee, 2003)
AimAim • To understand how the provision of enteral To understand how the provision of enteral
feeding via a PEG impacts on the daily life feeding via a PEG impacts on the daily life and QoL of adult patients, from both the and QoL of adult patients, from both the patients’ and carers’ perspectivespatients’ and carers’ perspectives
• Approval was obtained from the Local Research Approval was obtained from the Local Research and Ethics Committee and informed consent was and Ethics Committee and informed consent was sought.sought.
MethodsMethods• Cross sectional qualitative designCross sectional qualitative design• Purposive samplingPurposive sampling• Semi-structured interview approach developed to Semi-structured interview approach developed to
provide a consistent framework of questions for the provide a consistent framework of questions for the patients and carerspatients and carers
Semi-structured interviewsSemi-structured interviews• Format developed based on:Format developed based on: Available literature regarding patients’/carers’ views Available literature regarding patients’/carers’ views
of PEG feedingof PEG feeding Personal experiences of clinical practice Personal experiences of clinical practice Discussions with HCP’s in the field.Discussions with HCP’s in the field.
• Open and closed questions falling broadly into two Open and closed questions falling broadly into two categories: categories:
Service provisionService provision Impact of feeding on daily lifeImpact of feeding on daily life
• Eligibility: All adult patients receiving enteral feeds via a PEG within an NHS Trust, in the Northwest of England.
Data collection andData collection and analysisanalysis
Data CollectionData Collection• Subjects: 15 adult patients Subjects: 15 adult patients 19 carers of adults19 carers of adults• Location: subject’s choice - primarily own homes, some hospital.
• Interviews: All taped except in 2 patients who could not speak – Interviews: All taped except in 2 patients who could not speak – communication aids were used and their own words were documented communication aids were used and their own words were documented exactly as writtenexactly as written
Data analysisData analysis• Interviews transcribed and analysed manually:Interviews transcribed and analysed manually:• Open questions:Open questions: Systematic searching for relevant phrasesSystematic searching for relevant phrases Extracting and coding of phrasesExtracting and coding of phrases Sequential stages of reduction and orderingSequential stages of reduction and ordering Identification of emerged themesIdentification of emerged themes
• Closed Questions: Results presented as percentages of the responses Closed Questions: Results presented as percentages of the responses given.given.
• Independent analysis of one third of the transcripts by second Independent analysis of one third of the transcripts by second researcherresearcher
Results: Difficulties arising from Results: Difficulties arising from PEG feedingPEG feeding
Difficulties Difficulties experienceexperiencedd
Adult Patients Adult Patients (n=15)(n=15)
Yes No Yes No UnsureUnsure
Carers of Adult Carers of Adult Patients (n=19) Patients (n=19)
Yes No Yes No UnsureUnsure
NauseaNausea 1 1 (7%)(7%)
1212 (80%)(80%)
2 2 (13%)(13%)
1 1 (5%)(5%) 15 15 (79%)(79%)
3 3 (16%)(16%)
VomitingVomiting 3 3 (20%(20%))
10 10 (67%)(67%)
2 2 (13%)(13%)
4 4 (21%)(21%)
14 14 (74%)(74%)
1 1 (5%)(5%)
DiarrhoeaDiarrhoea 2 2 (13%(13%))
12 12 (80%)(80%)
1 1 (7%)(7%)
6 6 (32%)(32%)
12 12 (63%)(63%)
1 1 (5%)(5%)
Infection Infection of the PEG of the PEG sitesite
5 5 (33%(33%))
9 9 (60%)(60%)
1 1 (7%)(7%)
4 4 (21%)(21%)
1313(68(68%)%)
2 2 (11%)(11%)
LeakageLeakage 9 9 (60%(60%))
5 5 (33%)(33%)
1 1 (7%)(7%)
8 8 (42%)(42%)
9 9 (47%)(47%)
2 2 (11%)(11%)
Over Over granulatiogranulationn
2 2 (13%(13%))
11 11 (73%)(73%)
2 2 (13%)(13%)
5 5 (26%)(26%)
11 11 (58%)(58%)
3 3 (16%)(16%)
Results: responses to closed Results: responses to closed questionsquestions
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
Yes No Unsure
PatientsCarers
Do you experience any Do you experience any difficulties difficulties administering the feed?administering the feed?
Are you happy with Are you happy with the feeding regimen? the feeding regimen?
0%10%20%30%40%50%60%70%80%90%
100%
Yes No Unsure
PatientsCarers
Results cont.Results cont. In your view, do you In your view, do you
(the patient) have an (the patient) have an acceptable QoL?acceptable QoL?
0%
10%
20%
30%
40%
50%
60%
70%
80%
Yes No Unsure N/ A
PatientsCarers
0%
10%
20%
30%
40%
50%
60%
70%
80%
Yes No Unsure
PatientsCarers
Do you receive sufficient Do you receive sufficient support from the HCP’s?support from the HCP’s?
Ranking of the questions by propensity to generate disagreement and estimated odds for relationships
Propensity for disagreement
Estimated odds* (probability)
Patient and
Carer
Patient and
Professional
Carer and
Professional
Professional and
Professional
Q3 Has feeding been successful? Least 0.10 (0.09) 0.08 (0.08) 0.05 (0.05) 0.02 (0.02)
Q4. Is the feeding regimen appropriate? 0.15 (0.13) 0.13 (0.11) 0.08 (0.07) 0.04 (0.03)
Q5. Would you be in favour of the patient having the PEG reinserted?
0.31 (0.23) 0.26 (0.21) 0.15 (0.13) 0.07 (0.07)
Q2. Did the patient/carer receive sufficient information?
0.45 (0.31) 0.38 (0.28) 0.22 (0.18) 0.11 (0.10)
Q8. Is sufficient support provided from HCPs? 0.45 (0.31) 0.38 (0.28) 0.22 (0.18) 0.11 (0.10)
Q7. Does the patient have an acceptable QoL? 0.67 (0.40) 0.57 (0.36) 0.33 (0.25) 0.16 (0.14)
Q6. Would you choose to stop feeding if given the choice?
0.72 (0.42) 0.61 (0.38) 0.36 (0.26) 0.17 (0.15)
Q1. Did you/ the patient have a choice in the decision to place the PEG?
Most 0.77 (0.43) 0.65 (0.39) 0.38 (0.28) 0.18 (0.15)
* The odds are the relative odds of disagreement to non-disagreement. Hence odds of 0.18, for example, imply 18 disagreements for every 118 adults with PEG and hence a probability of 18/118 = 0.15. Similarly odds of 0.02 imply 2 disagreements for every 102 adults, giving 2/102 = 0.02.
Questions 3 Questions 3 and 4 and 4 generate generate similar similar perceptions perceptions between between respondentsrespondents..
Differences Differences in in perceptions perceptions are greater are greater for for Questions 5, Questions 5, 2 and 82 and 8
The The differences differences in in perceptions perceptions are greatest are greatest for for Questions 7, Questions 7, 6 and 1.6 and 1.
Implications for clinical Implications for clinical practicepractice
The effect of role pairing was significant (p<0.025). The effect of role pairing was significant (p<0.025). Broadly speaking:Broadly speaking: Disagreement between a carer and a health care Disagreement between a carer and a health care
professional is estimated at one and a half times as professional is estimated at one and a half times as likely as between two health care professionals. likely as between two health care professionals.
The gap in perceptions between patient and The gap in perceptions between patient and professional is larger with patient and professional professional is larger with patient and professional estimated as two and a half times as likely to disagree estimated as two and a half times as likely to disagree as two professionals. as two professionals.
Perhaps even more surprising, the largest gap in Perhaps even more surprising, the largest gap in perceptions is between the patient and their carer, perceptions is between the patient and their carer, since the patient and their carer are estimated almost since the patient and their carer are estimated almost three times more likely to disagree compared with two three times more likely to disagree compared with two professionals. professionals.
Emerging themes from open Emerging themes from open questions: the impact of questions: the impact of
feeding on daily lifefeeding on daily life• Relief of pressure to eat at mealtimesRelief of pressure to eat at mealtimes ‘‘It has taken the pressure off mealtimes; I was finding it very It has taken the pressure off mealtimes; I was finding it very
difficult to eat. I was spending hours on each meal and not difficult to eat. I was spending hours on each meal and not finishing it’finishing it’
• Disturbed sleepDisturbed sleep It disturbs my sleep so much. When you go to bed and this tube It disturbs my sleep so much. When you go to bed and this tube
is just sticking out of your stomach: you cannot move’is just sticking out of your stomach: you cannot move’• Restricted ability to go out Restricted ability to go out ‘‘Well, I just don’t go out anymore’Well, I just don’t go out anymore’ ‘ ‘Well I have to be here all day everyday; one carer comes in to sit Well I have to be here all day everyday; one carer comes in to sit
with him for 2 hours awith him for 2 hours a week while I go and do my shopping’week while I go and do my shopping’ ‘ ‘Everything about his regimen restricts my life. He’s feeding Everything about his regimen restricts my life. He’s feeding
during the day now and it is stopping us from going out. I’m quite during the day now and it is stopping us from going out. I’m quite bitter about it because he hasn’t got that long to live’bitter about it because he hasn’t got that long to live’
• Restricted choice of clothes/leakage of feed on clothesRestricted choice of clothes/leakage of feed on clothes ‘ ‘I can’t wear a bikini or cropped tops on my holidays like all my I can’t wear a bikini or cropped tops on my holidays like all my
friends’friends’ ‘ ‘It permanently leaks; I have to cover up and wrap up though you It permanently leaks; I have to cover up and wrap up though you
can’t afford to let it affect you, life’s too short to be self conscious’can’t afford to let it affect you, life’s too short to be self conscious’• Difficulties finding a place to feedDifficulties finding a place to feed ‘ ‘I gave him the feed on a bench in town once and I vowed I would I gave him the feed on a bench in town once and I vowed I would
never do that again’never do that again’
Themes cont…Themes cont…• Missing food / drinksMissing food / drinks ‘‘I just miss eating and drinking’I just miss eating and drinking’ ‘ ‘I only cook dishes that I know he didn’t like .I couldn’t sit and eat I only cook dishes that I know he didn’t like .I couldn’t sit and eat
his favourite meal while he cannot have even one mouthful’his favourite meal while he cannot have even one mouthful’• Social occasions: Christmas, birthday partiesSocial occasions: Christmas, birthday parties ‘‘It affects your social life when you go to parties. I go but I feel It affects your social life when you go to parties. I go but I feel
alienated and other people feel uncomfortable because they are alienated and other people feel uncomfortable because they are eating and I cannot’eating and I cannot’
‘ ‘We can’t even have a drink together at Christmas or even a piece We can’t even have a drink together at Christmas or even a piece of cake or a cup of tea. I don’t like drinking in front of him because of cake or a cup of tea. I don’t like drinking in front of him because I know he would love a cup of tea’I know he would love a cup of tea’
• Negative attitudes of others towards feedingNegative attitudes of others towards feeding ‘‘If we are in a restaurant people can be really put off’If we are in a restaurant people can be really put off’ ‘ ‘My husband is frightened of the tube; he’s frightened to give me a My husband is frightened of the tube; he’s frightened to give me a
hug’hug’
• Burden placed on other family membersBurden placed on other family members ‘‘Fancy getting to seventy six and having to get up at six every Fancy getting to seventy six and having to get up at six every
morning (to let the carers in). I would welcome that Shipman here. morning (to let the carers in). I would welcome that Shipman here. I would if he had two lethal injections, one for him and one for me’I would if he had two lethal injections, one for him and one for me’
Feelings towards PEG Feelings towards PEG feedingfeeding
• Depression Depression • AngerAnger• FrustrationFrustration• ReliefRelief• FearFear• WorryWorry• GratitudeGratitude
Carers onlyCarers only• UpsettingUpsetting• QueasinessQueasiness
ConclusionConclusion• Wide range of patient and carer experiences and Wide range of patient and carer experiences and
perspectivesperspectives• Cannot generalise about the impact of PEG Cannot generalise about the impact of PEG
feeding on individual patients and their familiesfeeding on individual patients and their families• Increased social support / support for daily life Increased social support / support for daily life
required, planned on an individualised basisrequired, planned on an individualised basis• Need to develop objective way to measure the Need to develop objective way to measure the
impact of PEG feeding on QoL impact of PEG feeding on QoL Further planned researchFurther planned research• Psychometric validation of the PEG QoL tool for Psychometric validation of the PEG QoL tool for
the 3 subgroups: Adult patients, carers of adults, the 3 subgroups: Adult patients, carers of adults, carers of childrencarers of children
Steps in the Development and Steps in the Development and testing of QoL Toolstesting of QoL Tools
Interviewing Patients to identify the important Interviewing Patients to identify the important issues relating to their QoLissues relating to their QoL
Selecting items for the questionnaire and pre-testing
Testing the preliminary tool for content and construct validity and reliability
Retesting the tool
Using the tool in Clinical Practice / Clinical Trials
AcknowledgementsAcknowledgements• Sincere thanks toSincere thanks to::• The patients and carers who The patients and carers who
participated.participated.• My supervisory team:My supervisory team:
Professor Janice Abbott - Director of Professor Janice Abbott - Director of StudiesStudies
Professor Peter Aggett - Second supervisorProfessor Peter Aggett - Second supervisor
• Seedcorn Funding Committee/ NHS Seedcorn Funding Committee/ NHS Trust Trust
ReferencesReferences
• Loeser,C, von Herz U, KLoeser,C, von Herz U, KÜÜchler T, et al. Quality of Life and chler T, et al. Quality of Life and Nutritional State in Patients on Home Enteral Tube Feeding. Nutritional State in Patients on Home Enteral Tube Feeding. Nutrition.2003. Vol 19,605-611.Nutrition.2003. Vol 19,605-611.
• Klose J, Heldwein W, Rafferzeder M, et al. Nutritional Status Klose J, Heldwein W, Rafferzeder M, et al. Nutritional Status and Quality of Life in patients with Percutaneous Endoscopic and Quality of Life in patients with Percutaneous Endoscopic Gastrostomy (PEG) in practice. Prospective one-year follow up. Gastrostomy (PEG) in practice. Prospective one-year follow up. Digestive Diseases and Sciences. 2003. 48, No 10; 2057-2063Digestive Diseases and Sciences. 2003. 48, No 10; 2057-2063
• Schneider SM, Pouget I, Staccini P, et al. Quality of Life in Schneider SM, Pouget I, Staccini P, et al. Quality of Life in long-term home enteral nutrition patients. Clinical Nutrition. long-term home enteral nutrition patients. Clinical Nutrition. 2000. 19 (1): 23-282000. 19 (1): 23-28
• Roberge C, Tran M, Massoud C, et al. Quality of life and home Roberge C, Tran M, Massoud C, et al. Quality of life and home enteral tube feeding: a French prospective study in patients enteral tube feeding: a French prospective study in patients with head and neck or oesophageal cancer. British Journal of with head and neck or oesophageal cancer. British Journal of Cancer. 2000. 82 (2) 263-269Cancer. 2000. 82 (2) 263-269
• Abbott J, Webb AK, Dodd M. Quality of Life in Cystic Fibrosis. Abbott J, Webb AK, Dodd M. Quality of Life in Cystic Fibrosis. Journal of the Royal Society of Medicine, 1997; 90: 37-42.Journal of the Royal Society of Medicine, 1997; 90: 37-42.
• Abbott J, Gee L. Quality of Life in Children and Adolescents Abbott J, Gee L. Quality of Life in Children and Adolescents with Cystic Fibrosis: Implications for Optimising Treatments with Cystic Fibrosis: Implications for Optimising Treatments and Clinical Trial Designs. Paediatric Drugs, 2003; 5(1): 41-56.and Clinical Trial Designs. Paediatric Drugs, 2003; 5(1): 41-56.