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Barriers to clinical research in children with inflammatory bowel disease: The patients' perspective.

ABSTRACT: BACKGROUND:The aim of this study was to determine the proportion of patients' caregivers willing to participate in clinical research and examine the possible barriers against recruitment to clinical research in children with inflammatory bowel disease. METHODS:In a cross-sectional study, caregivers and children with inflammatory bowel disease were surveyed via a questionnaire that addressed parents' willingness to participate in clinical studies and factors influencing their willingness to participate. RESULTS:A total of 118 caregivers to children with inflammatory bowel disease [median age 14.5, IQR: 12.0-15.8 years, 60 boys, 61 (52%) with Crohn's disease] who were followed for a median duration of 1.73 years (IQR 0.4-3.6 years) completed the survey. One hundred and four (88.2%) caregivers answered "Definitely" or "Probably" to participate in clinical research while 14 (11.8%) were "Neutral" or "Probably" unwilling to participate (P<0.001). Patients were less likely to participate in clinical research if they had longer disease duration (P = 0.019), or were in clinical relapse (P = 0.03). Parents' education, income, age of children at diagnosis, money incentive, disease relapse and medications at the time of the survey did not have any significant effect on willingness to participate. CONCLUSIONS:The majority of children with inflammatory bowel disease and their caregivers are willing to participate in clinical research.

SUBMITTER: El-Matary W

PROVIDER: S-EPMC6224089 | biostudies-literature | 2018

REPOSITORIES: biostudies-literature

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Barriers to clinical research in children with inflammatory bowel disease: The patients' perspective.

El-Matary Wael W Deora Vini V Grover Kanika K

PloS one 20181108 11

<h4>Background</h4>The aim of this study was to determine the proportion of patients' caregivers willing to participate in clinical research and examine the possible barriers against recruitment to clinical research in children with inflammatory bowel disease.<h4>Methods</h4>In a cross-sectional study, caregivers and children with inflammatory bowel disease were surveyed via a questionnaire that addressed parents' willingness to participate in clinical studies and factors influencing their willi ...[more]

PMID: 30408097

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Project description:IntroductionCrohn's disease (CD) and ulcerative colitis (UC) are chronic, inflammatory bowel diseases (IBD). Each class and type of medication available for the treatment of IBD has distinct characteristics and long-term effects that a patient may consider. We present the results of qualitative research that aimed to develop a descriptive framework that outlines the most relevant disease and/or treatment attributes for IBD treatment decisions and focuses on the patient perspective.MethodsThis research employed a three-step approach: a literature review to identify a broad list of attributes, a focus group meeting including patients and clinicians to assess the relevance of the attributes, and two rounds of voting to name and define each attribute. The literature review was used to develop the initial list of attributes. Although the same attributes were defined for both UC and CD, the relative importance of each attribute to UC or CD was considered. The list of attributes was discussed and evaluated in the focus group meeting, which included eight patient representatives and nine gastroenterologists. Using feedback elicited from the focus group meeting, the research team developed a draft of the descriptive framework that grouped the attributes into domain subsets. All members of the focus group participated in two subsequent rounds of structured, online voting, which was used to refine the wording to name and define each attribute. Additionally, participants ranked all the attributes included in the descriptive framework to suggest which attributes were less relevant and could be omitted.ResultsAmong 574 publications retrieved from the databases and registries, we identified 32 eligible publications, and an initial list of attributes was developed. This list was refined during the focus group meeting, resulting in a draft descriptive framework of attributes within subsets of domains. The final descriptive framework was developed based on structured rounds of online voting to further refine attribute names and definitions. In the final descriptive framework, a total of ten attributes were identified: abdominal pain, other disease-related pain, bowel urgency, fatigue, risk of cancer and serious infections within the next 10 years, risk of mild to moderate complications, aesthetic complications related to treatment, emotional status, sexual life, and social life and relationships. These attributes were distributed across three domains: efficacy, complications and risk, and health-related quality of life.ConclusionsThrough the identification of the ten most relevant attributes that influence patient decision making for IBD treatments, we developed a descriptive framework that should be considered by physicians when discussing IBD treatment options with their patients. The results of our qualitative research may also be helpful for the development of future IBD clinical studies and quantitative research.

Dataset Information

Barriers to clinical research in children with inflammatory bowel disease: The patients' perspective.

Publications

Barriers to clinical research in children with inflammatory bowel disease: The patients' perspective.

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