hypoparathyroidism management: success of aligned

1
Amy Larkin, PharmD, Medscape Education, New York, NY; Piyali Chatterjee, Medscape Education, New York, NY; Mary Kathryn Van Kleunen, Healthcare Performance Consulting, Statesboro, Georgia; Susan Grady, MSN, RN-BC, Medscape Education, New York, NY; Karen Badal, MD, MPH, Medscape Education, New York, NY, Haleh Kadkhoda, MS, Medscape Education, New York, NY, Julie Hunsaker, HypoPARAathyroidism Association, Inc. HYPOPARATHYROIDISM MANAGEMENT: SUCCESS OF ALIGNED HEALTHCARE PROVIDER AND PATIENT/CARE PARTNER EDUCATION AT PROMPTING CHANGES IN PRACTICE Scan here to view this poster online. MON 344 INTRODUCTION Hypoparathyroidism is a rare, complex endocrine disorder that can stem from a wide range of causes [Bilezikian 2011] Although thyroidectomy is the most common reason for transient hypoparathyroidism, low or absent levels of parathyroid hormone (PTH) can also result from a wide range of causes, including autoimmune disorders, genetic syndromes, infiltrative diseases, irradiation, and magnesium disorders [Shoback 2008] Approximately 7.6% of thyroidectomy surgeries result in hypoparathyroidism. Of these, it is thought that 75% of cases are transient hypoparathyroidism, while 25% are chronic [Powers 2013] At the time of content planning, there were no formal guidelines for the treatment of hypoparathyroidism, [Bilezikian 2011] and practice patterns varied among clinicians The effect of case-based online education designed to help clinicians implement strategies for more successful patient interactions related to hypoparathyroidism management was studied A patient/care partner education module, aligned with available clinician education, was developed to improve patient/ care partner knowledge of the disease and its management The impact of aligned, online clinician and patient/care partner education was measured by assessing planned changes in clinician practice and patient action after participation in the initiative Educational need and clinical performance gaps related to hypoparathyroidism management informed content development CLINICIAN ACTIVITY An online, 15-minute case-based video educational activity, in which 2 experts in the field discussed successful management plans for hypoparathyroidism, was developed for clinicians This faculty discussion of real world cases was reinforced with synchronized slides presenting supportive data The activity was targeted to endocrinologists, surgeons, and primary care physicians (PCPs) who diagnose, refer, or treat patients with hypoparathyroidism An intent to change (Planned Change Assessment, or PCA) survey and barrier analysis was delivered immediately post-exposure to education and, again, 8 weeks later to measure self-reported changes in practice The activity launched online March 22, 2016, and data were collected through August 16, 2016 PATIENT/CARE PARTNER ACTIVITY An online, interactive text activity with video of patients, focusing on strategies for self-management of hypoparathyroidism was developed Hosted on WebMD.org, a website dedicated to patient and care partner/family member education – WebMD delivers relevant content to individual learners by use of contextual links to direct them to WebMD Education activities. In addition, learners accessed content through WebMD newsletters and the site’s search engine. Patient/care partner learners were also referred to the activity by an HCP via a Prescription to Learn , a patient education referral tool that HCPs download from the CME activity and hand/send to a patient Activity was <7 minutes in length, written at the fifth to seventh grade reading level, and included actionable next steps to facilitate learning and behavior change Demographic data were collected—age, gender, ethnicity, and interest A knowledge question presented before and after the activity assessed learning gains The activity launched online March 21, 2016, and data were collected through December 1, 2016 METHODS RESULTS CLINICIAN EDUCATION A total of 119 clinicians in the target audience completed the post-activity survey (Figure 1), with 94% of respondents indicating an average of 3.4 intended changes each in practice out of a total of 9 options (Figure 2) When re-engaged with the follow-up survey, 75% of respondents reported having implemented an average of 2.8 changes each in practice out of a total of 7 options (Figure 3) Changes in practice were reported in the following areas: targeting lab values to minimize symptoms and complications (80% endocrinologists, 100% PCPs), ordering appropriate lab tests (40% endocrinologists, 100% PCPs), and making appropriate therapy adjustments when a patient’s calcium level is difficult to control (50% PCPs, 60% endocrinologists) (Figure 3) The most commonly reported barriers to practice change for PCPs included lack of familiarity with new treatment options and, for endocrinology respondents, patient adherence to medication and lab testing requirements (Figure 4) FIGURE 3. PCA Results: Actual Changes in Practice Primary Care Physicians, n=4 Endocrinologists, n=5 Practice Change 0% 20% 40% 60% 80% 100% % Selecting This Change 100% 100% 50% 0% 25% 25% 0% 40% 80% 60% 40% 20% 20% 0% 5. Recommending biologic parathyroid hormone replacement therapy for patients with intractable hypocalcemia. 6. Discussing with patients undergoing thyroid or thyroid surgery, the possibility of and challenges of living with hypoparathyroidism. 7. Other Please indicate what you are doing differently as a result of participating in this program. (Select all that apply) 1. Ordering appropriate laboratory testing for hypoparathyroidism in patients who complain of "brain fog," tingling sensations, muscle cramps or spasms, vitiligo, or defects in fingernails or teeth. 2. Maintaining serum calcium and phosphorus at low and high normal levels, respectively, to decrease the risk of symptoms, kidney stones, and ectopic soft tissue calcification. 3. Adding thiazide diuretics or chlorthalidone to the patient's treatment regimen when calcium is difficult to control or when the patient is experiencing hypercalciuria. 4. Periodically measuring 24-hour urine calcium to monitor renal function and to detect any renal toxicity from hypercalciuria in patients with hypoparathyroidism. FIGURE 4. PCA Results: Barriers to Implementing Changes in Practice Primary Care Physicians, n=5 Endocrinologists, n=6 3.4 3.2 0.6 2.8 2.2 3.6 3 0.0 0.9 0.6 0.6 0.6 0.0 0 1 2 3 4 5 1. I lack confidence in managing hypoparathyroidism. 2. I am not comfortable counseling patients about the quality of life issues that hyoparathyroidism entails. 3. I do not have time to manage and monitor hypoparathyroidism. 4. Lab monitoring is too complicated for patients with hypoparathyroidism. 5. I am not familiar with newly available treatment options for hypoparathyroidism. 6. Data do not currently support the use of novel biologic parathyroid hormone replacement therapy. 7. Patient affordability prevents me from utilizing biologic parathyroid hormone replacement therapy. 8. Patients have trouble adhering to complicated supplemental therapy and required lab visits. 9. I have not had time since the activity to make desired changes in practice. 10. Other Average Impact Barriers Please indicate any barriers that may have prevented you from making changes (or additional changes) in practice and the extent to which they impacted practice change. (0 = no barrier to 5 = high barrier) 1.3 3.4 3 3.2 2.1 2.3 1.3 Please indicate below what you anticipate doing differently as a result of participating in this program. (Select all that apply) Primary Care Physicians, n=85 Endocrinologists, n=34 Change in Practice 0% 20% 40% 60% 80% 7. Other change(s) 8. This program confirmed my existing practices. 9. None of the above % Selecting This Change 72% 71% 52% 53% 49% 50% 56% 47% 41% 2% 1% 12% 29% 3% 3% 38% 59% 65% 1. Order appropriate laboratory testing for hypoparathyroidism in patients who complain of "brain fog," tingling sensations, muscle cramps or spasms, vitiligo, or defects in fingernails or teeth. 2. Maintain serum calcium and phosphorus at low and high normal levels, respectively, to decrease the risk of symptoms, kidney stones, and ectopic soft tissue calcification. 3. Add thiazide diuretics or chlorthalidone to the patient's treatment regimen when calcium is difficult to control or when the patient is experiencing hypercalciuria. 4. Periodically measure 24-hour urine calcium to monitor renal function and to detect any renal toxicity from hypercalciuria in patients with hypoparathyroidism. 5. Consider biologic parathyroid hormone replacement therapy for patients with intractable hypocalcemia. 6. Discuss with patients undergoing thyroid or thyroid surgery, the possibility of and challenges of living with hypoparathyroidism. FIGURE 2. PCA Results: Planned Changes PATIENT/CARE PARTNER EDUCATION To date, 1519 patients/care partners have participated in the activity and completed the pre- and post-assessment questions An additional 2722 patients/care partners participated in the activity, but did not complete all required questions Of the 1519 individuals who completed the pre- post- assessment questions, 53% self-identified as having hypoparathyroidism, 93% were women, 30% were between 45 and 54 years of age, 31% were older than age 54, and 65% were white/non-Hispanic (Figures 5-8) Pre-/Post-Assessment Improvement A 31% increase in recognition of early signs of low calcium was observed among patients/care partners after activity participation (Figure 9) FIGURE 1. PCA Process and Participation FIGURE 9 DEMOGRAPHICS Notes For more information contact Amy Larkin, PharmD, Director of Clinical Strategy, Medscape, LLC, at [email protected]. Disclosures The authors have nothing to disclose. The metrics and outcomes gathered in this assessment are strong indicators that the respective educational activities prompted changes in clinical performance by clinicians and in knowledge levels of patients/care partners Targeted and focused digital education has the potential to empower, engage, and equip patients and their care partners with information needed for self-care and condition management Aligned professional and patient/care partner education on developing successful hypoparathyroidism management plans is a useful way to effect changes in practice and support shared decision making CONCLUSIONS NEEDS ASSESSMENT AND CONTENT DEVELOPMENT AT MEDSCAPE Change/barrier questions completed n=119 94% (n=112) planned to make 377 changes (an average of 3.4 changes each) SURVEYS ON CLINICAL CHOICES CREATED BY HPC AND FACULTY 3-MONTH FOLLOW-UP CHANGE SURVEY COMPLETED BY TARGET AUDIENCE n=12 75% (n=9) completed 25 changes (an average of 2.8 changes each) IMMEDIATE PCA SURVEY COMPLETED BY TARGET AUDIENCE n=248 as of 8/16/2016 Source of Support This initiative was supported by an independent educational grant from NPS Pharmaceuticals, Inc., an indirect subsidiary of Shire North American Group, Inc. References Bilezikian JP, Khan A, Potts JT Jr, et al. Hypoparathyroidism in the adult: epidemiology, diagnosis, pathophysiology, target-organ involvement, treatment, and challenges for future research. J Bone Mineral Res . 2011;26:2317-2337. Powers J, Joy K, Ruscio A, Lagast H. Prevalence and incidence of hypoparathyroidism in the United States using a large claims database. J Bone Miner Res . 2013;28:2570-2576. Shoback D. Clinical practice. Hypoparathyroidism. N Engl J Med. 2008;359:391-403. If you have hypoparathyroidism, what are the early signs of low calcium? Pre % Post % Headache 880 23.8% 99 6.3% Increased thirst 884 23.9% 207 13.3% Need to pass more urine than usual 515 13.9% 173 11.1% Numbness in hands, feet, or around the mouth 1425 38.5% 1083 69.3% % of completers I am a caregiver for someone with this condition 1.3 % I am a family member of someone with this condition 5.3 % I am simply interested in learning more about this condition 40.6 % I have this condition 52.8 % 0% 20% 40% 60% 80% 100% % of Completers 6.8% FEMALE MALE Value 93.2% 31.1% Over 54 Completers, % 30.5% 45 to 54 Completers, % 24.0% 35 to 44 Completers, % 11.4% 25 to 34 Completers, % 3.1 % Under 25 Completers, % % of Completers American Indian or Alaska Native 1.3% Asian 4.3% Black or African-American 9.0% Hispanic or Latino 11.1% I prefer not to answer 8.8% Native Hawaiian or other Pacific Islander 0.3% White, non-Hispanic 65.3% FIGURE 7. Age FIGURE 6. Gender FIGURE 5. Interest FIGURE 8. Ethnicity

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Page 1: HYPOPARATHYROIDISM MANAGEMENT: SUCCESS OF ALIGNED

Amy Larkin, PharmD, Medscape Education, New York, NY; Piyali Chatterjee, Medscape Education, New York, NY; Mary Kathryn Van Kleunen, Healthcare Performance Consulting, Statesboro, Georgia; Susan Grady, MSN, RN-BC, Medscape Education, New York, NY; Karen Badal, MD, MPH, Medscape Education, New York, NY, Haleh Kadkhoda, MS, Medscape Education, New York, NY, Julie Hunsaker, HypoPARAathyroidism Association, Inc.

HYPOPARATHYROIDISM MANAGEMENT: SUCCESS OF ALIGNED HEALTHCARE PROVIDER AND PATIENT/CARE PARTNER EDUCATION AT PROMPTING CHANGES IN PRACTICE

Scan here to view this poster online.

MON 344

INTRODUCTION

■ Hypoparathyroidism is a rare, complex endocrine disorder that can stem from a wide range of causes [Bilezikian 2011]

■ Although thyroidectomy is the most common reason for transient hypoparathyroidism, low or absent levels of parathyroid hormone (PTH) can also result from a wide range of causes, including autoimmune disorders, genetic syndromes, infiltrative diseases, irradiation, and magnesium disorders [Shoback 2008]

■ Approximately 7.6% of thyroidectomy surgeries result in hypoparathyroidism. Of these, it is thought that 75% of cases are transient hypoparathyroidism, while 25% are chronic [Powers 2013]

■ At the time of content planning, there were no formal guidelines for the treatment of hypoparathyroidism, [Bilezikian 2011] and practice patterns varied among clinicians

■ The effect of case-based online education designed to help clinicians implement strategies for more successful patient interactions related to hypoparathyroidism management was studied

■ A patient/care partner education module, aligned with available clinician education, was developed to improve patient/care partner knowledge of the disease and its management

■ The impact of aligned, online clinician and patient/care partner education was measured by assessing planned changes in clinician practice and patient action after participation in the initiative

Educational need and clinical performance gaps related to hypoparathyroidism management informed content development

CLINICIAN ACTIVITY

■ An online, 15-minute case-based video educational activity, in which 2 experts in the field discussed successful management plans for hypoparathyroidism, was developed for clinicians

■ This faculty discussion of real world cases was reinforced with synchronized slides presenting supportive data

■ The activity was targeted to endocrinologists, surgeons, and primary care physicians (PCPs) who diagnose, refer, or treat patients with hypoparathyroidism

■ An intent to change (Planned Change Assessment, or PCA) survey and barrier analysis was delivered immediately post-exposure to education and, again, 8 weeks later to measure self-reported changes in practice

■ The activity launched online March 22, 2016, and data were collected through August 16, 2016

PATIENT/CARE PARTNER ACTIVITY

■ An online, interactive text activity with video of patients, focusing on strategies for self-management of hypoparathyroidism was developed

• Hosted on WebMD.org, a website dedicated to patient and care partner/family member education

– WebMD delivers relevant content to individual learners by use of contextual links to direct them to WebMD Education activities. In addition, learners accessed content through WebMD newsletters and the site’s search engine. Patient/care partner learners were also referred to the activity by an HCP via a Prescription to Learn, a patient education referral tool that HCPs download from the CME activity and hand/send to a patient

• Activity was <7 minutes in length, written at the fifth to seventh grade reading level, and included actionable next steps to facilitate learning and behavior change

■ Demographic data were collected—age, gender, ethnicity, and interest

■ A knowledge question presented before and after the activity assessed learning gains

■ The activity launched online March 21, 2016, and data were collected through December 1, 2016

METHODS

RESULTS

CLINICIAN EDUCATION

■ A total of 119 clinicians in the target audience completed the post-activity survey (Figure 1), with 94% of respondents indicating an average of 3.4 intended changes each in practice out of a total of 9 options (Figure 2)

■ When re-engaged with the follow-up survey, 75% of respondents reported having implemented an average of 2.8 changes each in practice out of a total of 7 options (Figure 3)

■ Changes in practice were reported in the following areas: targeting lab values to minimize symptoms and complications (80% endocrinologists, 100% PCPs), ordering appropriate lab tests (40% endocrinologists, 100% PCPs), and making appropriate therapy adjustments when a patient’s calcium level is difficult to control (50% PCPs, 60% endocrinologists) (Figure 3)

■ The most commonly reported barriers to practice change for PCPs included lack of familiarity with new

treatment options and, for endocrinology respondents, patient adherence to medication and lab testing requirements (Figure 4)

50%

0%

20%

40%

60%

80%

100%

Question #1 Question #2 Question #3 Question #4

% Correct Pre % Correct Post Relative % Change

75% 45% 107%

Nephrologists (n = 113)

87%

61%

88%82%

53%

40%

0%

20%

40%

60%

80%

100%

Question #1 Question #2 Question #3 Question #4

% Correct Pre % Correct Post Relative % Change

169% 105% 24% 165%

100%

79%71%

26% 27%

65%

24%

64%

Primary Care Physicians (n = 214)

35%

50%

53%

FIGURE 3. PCA Results: Actual Changes in Practice

Primary Care Physicians, n=4 Endocrinologists, n=5

Pra

ctic

e C

hang

e

0% 20% 40% 60% 80% 100%

% Selecting This Change

100%

100%

50%

0%

25%

25%

0%

40%

80%

60%

40%

20%

20%

0%

5. Recommending biologic parathyroid hormone replacement therapy forpatients with intractable hypocalcemia.

6. Discussing with patients undergoing thyroid or thyroid surgery, the possibility of and challenges of living with hypoparathyroidism.

7. Other

Please indicate what you are doing dierently as a result of participating in this program. (Select all that apply)

1. Ordering appropriate laboratory testing for hypoparathyroidism in patients who complain of "brain fog," tingling sensations, muscle cramps or spasms,

vitiligo, or defects in fingernails or teeth.

2. Maintaining serum calcium and phosphorus at low and high normal levels, respectively, to decrease the risk of symptoms, kidney stones, and ectopic

soft tissue calcification.

3. Adding thiazide diuretics or chlorthalidone to the patient's treatment regimen when calcium is di�cult to control or when the patient

is experiencing hypercalciuria.

4. Periodically measuring 24-hour urine calcium to monitor renal function and to detect any renal toxicity from hypercalciuria in patients with hypoparathyroidism.

FIGURE 4. PCA Results: Barriers to Implementing Changes in Practice

Primary Care Physicians, n=5 Endocrinologists, n=6

3.4

3.20.6

2.8

2.2

3.6

3

0.0

0.9

0.6

0.6

0.6

0.0

0 1 2 3 4 5

1. I lack confidence in managing hypoparathyroidism.

2. I am not comfortable counseling patients about the quality of life issues that hyoparathyroidism entails.

3. I do not have time to manage and monitor hypoparathyroidism.

4. Lab monitoring is too complicated for patients with hypoparathyroidism.

5. I am not familiar with newly available treatment options for hypoparathyroidism.

6. Data do not currently support the use of novel biologic parathyroid hormone replacement therapy.

7. Patient a�ordability prevents me from utilizing biologic parathyroid hormone replacement therapy.

8. Patients have trouble adhering to complicated supplemental therapy and required lab visits.

9. I have not had time since the activity to make desired changes in practice.

10. Other

Average Impact

Bar

riers

Please indicate any barriers that may have prevented you from making changes (or additional changes) in practice and the extent to which they impacted practice change. (0 = no barrier to 5 = high barrier)

1.33.4

3

3.2

2.1

2.3

1.3

Please indicate below what you anticipate doing di�erently as a result of participating in this program. (Select all that apply)

Primary Care Physicians, n=85 Endocrinologists, n=34

Cha

nge

in P

ract

ice

0% 20% 40% 60% 80%

7. Other change(s)

8. This program confirmed my existing practices.

9. None of the above

% Selecting This Change

72%71%

52%53%

49%

50%

56%

47%

41%

2%

1%

12%29%

3%

3%

38%

59%

65%

1. Order appropriate laboratory testing for hypoparathyroidism in patients who complain of "brain fog," tingling sensations, muscle cramps or spasms, vitiligo, or defects in fingernails or teeth.

2. Maintain serum calcium and phosphorus at low and high normal levels, respectively, to decrease the risk of symptoms, kidney stones, and ectopic soft tissue calcification.

3. Add thiazide diuretics or chlorthalidone to the patient's treatment regimen when calcium is di�cult to control or when the patient is experiencing hypercalciuria.

4. Periodically measure 24-hour urine calcium to monitor renal function and to detect any renal toxicity from hypercalciuria in patients with hypoparathyroidism.

5. Consider biologic parathyroid hormone replacement therapy for patients with intractable hypocalcemia.

6. Discuss with patients undergoing thyroid or thyroid surgery, the possibility of and challenges of living with hypoparathyroidism.

FIGURE 2. PCA Results: Planned Changes

PATIENT/CARE PARTNER EDUCATION

■ To date, 1519 patients/care partners have participated in the activity and completed the pre- and post-assessment questions

• An additional 2722 patients/care partners participated in the activity, but did not complete all required questions

■ Of the 1519 individuals who completed the pre- post-assessment questions, 53% self-identified as having hypoparathyroidism, 93% were women, 30% were between 45 and 54 years of age, 31% were older than age 54, and 65% were white/non-Hispanic (Figures 5-8)

Pre-/Post-Assessment Improvement

■ A 31% increase in recognition of early signs of low calcium was observed among patients/care partners after activity participation (Figure 9)

FIGURE 1. PCA Process and Participation

50%

0%

20%

40%

60%

80%

100%

Question #1 Question #2 Question #3 Question #4

% Correct Pre % Correct Post Relative % Change

75% 45% 107%

Nephrologists (n = 113)

87%

61%

88%82%

53%

40%

0%

20%

40%

60%

80%

100%

Question #1 Question #2 Question #3 Question #4

% Correct Pre % Correct Post Relative % Change

169% 105% 24% 165%

100%

79%71%

26% 27%

65%

24%

64%

Primary Care Physicians (n = 214)

35%

50%

53%

FIGURE 9

DEMOGRAPHICS

50%

0%

20%

40%

60%

80%

100%

Question #1 Question #2 Question #3 Question #4

% Correct Pre % Correct Post Relative % Change

75% 45% 107%

Nephrologists (n = 113)

87%

61%

88%82%

53%

40%

0%

20%

40%

60%

80%

100%

Question #1 Question #2 Question #3 Question #4

% Correct Pre % Correct Post Relative % Change

169% 105% 24% 165%

100%

79%71%

26% 27%

65%

24%

64%

Primary Care Physicians (n = 214)

35%

50%

53% 50%

0%

20%

40%

60%

80%

100%

Question #1 Question #2 Question #3 Question #4

% Correct Pre % Correct Post Relative % Change

75% 45% 107%

Nephrologists (n = 113)

87%

61%

88%82%

53%

40%

0%

20%

40%

60%

80%

100%

Question #1 Question #2 Question #3 Question #4

% Correct Pre % Correct Post Relative % Change

169% 105% 24% 165%

100%

79%71%

26% 27%

65%

24%

64%

Primary Care Physicians (n = 214)

35%

50%

53%

NotesFor more information contact Amy Larkin, PharmD, Director of Clinical Strategy, Medscape, LLC, at [email protected].

DisclosuresThe authors have nothing to disclose.

■ The metrics and outcomes gathered in this assessment are strong indicators that the respective educational activities prompted changes in clinical performance by clinicians and in knowledge levels of patients/care partners

■ Targeted and focused digital education has the potential to empower, engage, and equip patients and their care partners with information needed for self-care and condition management

■ Aligned professional and patient/care partner education on developing successful hypoparathyroidism management plans is a useful way to effect changes in practice and support shared decision making

CONCLUSIONS

NEEDS ASSESSMENT AND CONTENT DEVELOPMENT AT MEDSCAPE

Change/barrier questions completed n=119

94% (n=112) planned to make 377 changes

(an average of 3.4 changes each)

SURVEYS ON CLINICAL CHOICES CREATED BY HPC AND FACULTY

3-MONTH FOLLOW-UP CHANGE SURVEY COMPLETED BY TARGET

AUDIENCEn=12

75% (n=9) completed 25 changes (an average of 2.8 changes each)

IMMEDIATE PCA SURVEY COMPLETED BY TARGET AUDIENCE

n=248 as of 8/16/2016

Source of SupportThis initiative was supported by an independent educational grant from NPS Pharmaceuticals, Inc., an indirect subsidiary of Shire North American Group, Inc.

ReferencesBilezikian JP, Khan A, Potts JT Jr, et al. Hypoparathyroidism in the adult: epidemiology, diagnosis, pathophysiology, target-organ involvement, treatment, and challenges for future research. J Bone Mineral Res. 2011;26:2317-2337.

Powers J, Joy K, Ruscio A, Lagast H. Prevalence and incidence of hypoparathyroidism in the United States using a large claims database. J Bone Miner Res. 2013;28:2570-2576.

Shoback D. Clinical practice. Hypoparathyroidism. N Engl J Med. 2008;359:391-403.

If you have hypoparathyroidism, what are the early signs of low calcium? Pre % Post %

Headache 880 23.8% 99 6.3%

Increased thirst 884 23.9% 207 13.3%

Need to pass more urine than usual 515 13.9% 173 11.1%

Numbness in hands, feet, or around the mouth 1425 38.5% 1083 69.3%

% of completers

I am a caregiver for someone with this condition 1.3 %

I am a family member of someone with this condition

5.3 %

I am simply interested in learning more about this condition

40.6 %

I have this condition 52.8 %0%

20%

40%

60%

80%

100%

% of Completers

6.8%

FEMALE MALE

Val

ue

93.2%

31.1%Over 54Completers, %

30.5%45 to 54Completers, %

24.0%35 to 44Completers, %

11.4%25 to 34Completers, %

3.1 %Under 25Completers, %

% of Completers

American Indian or Alaska Native 1.3%

Asian 4.3%

Black or African-American 9.0%

Hispanic or Latino 11.1%

I prefer not to answer 8.8%

Native Hawaiian or other Pacific Islander 0.3%

White, non-Hispanic 65.3%

FIGURE 7. Age

FIGURE 6. Gender FIGURE 5. Interest

FIGURE 8. Ethnicity