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Parental perspectives on pediatric inflammatory bowel disease: Unraveling concerns, and study participation
Adi Eindor-Abarbanel1, Noa Pinchevski1, Tzippora Shalem1
1Pediatric Gastroenterology, Hepatology and Nutrition Division, Shamir Medical Center, Zeriffin, Israel.
Insights
Parents of children with inflammatory bowel disease (IBD) worry more about medication side effects than disease symptoms. They are hesitant about clinical trials involving new medications but open to studies on nutrition and complementary therapies.
Area of Science:
- Pediatric gastroenterology
- Clinical trial recruitment
- Patient-reported outcomes
Background:
- Parental concerns regarding pediatric inflammatory bowel disease (IBD) treatments predate the biologic era.
- Existing literature lacks insight into parental perceptions of clinical studies for pediatric IBD.
- This study addresses the gap in understanding parental concerns and willingness to participate in pediatric IBD research.
Purpose of the Study:
- To explore parental concerns about pediatric IBD and its treatments.
- To identify factors influencing these concerns.
- To assess parental willingness for their child's participation in clinical studies.
Main Methods:
- Anonymous questionnaires were distributed via social media to parents of pediatric IBD patients.
- The survey assessed willingness for clinical study participation, bothersome disease aspects, and sense of coherence (SOC).
Main Results:
- Concerns about medication side effects (80.04%) exceeded worries about disease symptoms (73.47%).
- Lower SOC, limited medical access, and older child's age at diagnosis correlated with higher disease impact concerns.
- Parents were reluctant for new medication trials (54.5%) but favored nutritional (84.2%) and complementary medicine studies (91.1%).
Conclusions:
- Parents of pediatric IBD patients exhibit significant apprehension regarding medication side effects.
- Parental reluctance exists for clinical studies involving new medications.
- Greater parental acceptance was observed for studies focusing on nutritional and complementary therapies.
Objectives:
The impact of disease burden extends beyond pediatric inflammatory bowel disease (IBD) patients to include their parents. Previous studies, predating the biologic era, have highlighted parental concerns about potential side effects associated with IBD medications. However, there is a notable gap in the literature regarding parents' perceptions of clinical studies involving pediatric IBD patients. This study aims to explore the specific concerns troubling parents of children with IBD, identifying factors influencing these concerns, and assesses parental willingness to allow their child's participation in clinical studies.
Methods:
Utilizing social media, we disseminated an anonymous questionnaire to parents of pediatric IBD patients. The questionnaire encompassed queries about parental willingness for their child to partake in clinical studies, aspects of the disease deemed bothersome, and the sense of coherence scale (SOC).
Results:
Responses were obtained from 101 parents, with a mean age of 46.4, of whom 82.2% were female. Concerns about potential future side effects of their child's medications surpassed worries about disease symptoms (80.04% vs. 73.47%). Linear regression analysis revealed that parents with lower SOC scores, limited medical care accessibility, and a higher age of the child at diagnosis, exhibited heightened concerns about the future impact of the disease on their child (p = 0.016, 0.003, and 0.045, respectively). While a majority rejected participation in studies involving new medications (54.5%), there was greater agreement for studies on nutritional therapies (84.2%) and complementary medicine (91.1%). Classification tree analysis indicated that women were more inclined to permit their child's participation in studies focusing on complementary medicine (adjusted p = 0.002).
Conclusion:
Parents of IBD patients express greater apprehension about potential side effects from IBD medications and display reluctance toward their child participating in clinical studies related to medications.
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