Cystic Fibrosis Resource and Information Needs Survey

Written by Melissa75 and Imogene In the Spring of 2015, we surveyed the CF community on resource and information needs. 478 people responded, answering questions about the resources for CF care they most believe could improve their CF care, and what topics they’re most interested in learning about. We’d like to share our results with you, and we hope you find them as fascinating as we do. Question 1 Across the entire pool of respondents, the resource the most people Strongly Agree would improve their ability to manage their CF care is Tools for home health monitoring (62%), following by Work station furniture designed specifically for CF (45%), Patient support hotline (43%) and Caregiver support hotline (40%). When Strongly Agree and Somewhat Agree responses are combined, the following resources are believed by the most survey respondents to have the potential to improve CF care. Tools for home health monitoring (e.g. spirometer) 83% Support hotline (Patient) 72% Work station furniture designed specifically for CF equipment and medications 72% Support hotline (Caregiver) 72% Community-created webinars on topics of interest 71% Genetic mutation groups for information sharing 69% Course on time management and self-care (Patient) 66% When broken into resources valued by Patients vs. Caregivers vs. Health Professionals/Other, tools for home health monitoring still comes in first place for all groups. But for second place, Patients want work station furniture designed for CF, Caregivers want a support hotline for patients, and Health Professionals/Others want a support hotline for caregivers. Of note, Patients rank third a support hotline for Caregivers , higher than a hotline for themselves. Some interesting trends that emerge when the responses are broken down by age (20 and under, 21-40, 41 and older). Those older than 41 years seem to place less importance on work station furniture, and more on support groups and hotlines. The 21-40 year age range places the highest importance on tools for home health monitoring, and those 20 years and under are more likely to feel strongly that any of the resources could improve their CF care management. Question 2 We tried to determine whether members of the community already had a particular resource, and if not, why they don’t have it. About one quarter of respondents Already Have tools for home health monitoring. But unfortunately, another roughly one quarter don’t have these tools because they Can’t Afford It. And over one-third of respondents either feel the tools are Too Difficult to Obtain or that the tools they need Don’t Exist. The Don’t Want It category for why people don’t have a resource was smallest for tools for home health monitoring and community created webinars on topics of interest. The Don’t Want It answer was selected most often for patient and caregiver courses on time management/self care. Question 3 The following two topics were most often selected as being of high interest by the people who took the survey: Exercise (39%) and Comorbidities (33%). When the responses were broken into the categories of Patients and Caregivers, we see that Exercise is the most often selected topic of interest among Patients (47%), whereas School, Career and Life Planning (39%) is the most frequently selected topic of interest among Caregivers. Patients' most frequently selected Topics of Interest Caregivers' most frequently selected Topics of Interest Exercise 47% School, Career and Life Planning 39% Comorbidities 33% Exercise 33% Weight Gain and Nutrition 30% Weight Gain and Nutrition 29% Natural Therapies 27% Health Insurance 29% Health Insurance 26% Comorbidities 28% Environmental Factors Influencing Health 25% Natural Therapies 25% Time Management 24% Genetic Mutations 25% Genetic Mutations 24% Government and Legal Regulations, SSDI 25% When the Topics of Interest are divided by the age of the person with CF (caregivers were instructed to give the age range of the person with CF for whom they care), we could see that School, Career and Life Planning, and Weight Gain and Nutrition are the two most important topics in the 20 years and under group. Exercise, and School, Career and Life Planning are the two most important topics in the 21-40 year group; and Exercise and Comorbidities are the most important topics in the 41 and over group. We speculate that traditional life stages play a role in these interests. People with CF over the age of 41 are dealing with more Comorbidities. People in the 21-40 year range are starting, or shifting out of careers. And the youngest people with CF, 20 and under, likely have more representatives of a classic presentation of CF, thus increasing the interest in Weight Gain and Nutrition. Question 4 This question asked respondents to give the top three questions they’d like asked of the CF Community. The wealth of curiosity and passion demonstrated in the questions people asked was impressive and moving. There are a total of 603 questions, and the range of subjects covered is very broad. We feel that each question is worth asking and are studying them more for trends and to better understand unmet needs in the community.

Cystic Fibrosis Resource and Information Needs Survey

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