Abstract
BackgroundCrohn’s disease (CD) is a chronic inflammatory condition of the gastrointestinal tract that affects people across the age spectrum but often starts in childhood or early adulthood. Despite this, almost all published research examining the symptomatic and health-related quality of life (HRQL) experiences of CD has been conducted in an adult population. Studies providing a comprehensive overview of the lived experience of pediatric and adolescent CD are virtually non-existent. The experiences of younger children aged 2–7 years are especially unknown.ResultsA total of 49 participants (31 children and 18 parents) were interviewed. This included 11 dyads (i.e., parents and children from the same family). Analyses were conducted based on reporter-type (patient self-report vs parent observer-report) and age subgroups (ages 2–4 vs 5–7 vs 8–11 vs 12–17). Key symptoms were identified across the age subgroups and reporter types. Abdominal/stomach pain, passing gas/feeling gassy, diarrhea/liquid stools, fatigue/tiredness, bowel urgency, blood in stools, stomach cramping, constipation, and incomplete evacuation were discussed most frequently. The most common HRQL impacts included impact on physical activity, school, social life, and mood (i.e., feeling sad/low), and were mostly consistent between reporter type and across age spectrum. Concept agreement between parents and children in the dyad analysis was > 60% for most symptoms and impacts.ConclusionsQualitative interviews revealed the substantial symptom and HRQL burden of pediatric CD from the child and parent perspectives and that disease experiences were largely consistent across the age range and based on both reporter perspectives. This is an important first step towards implementing a robust measurement strategy for the assessment of symptoms and HRQL impacts in pediatric CD.
Highlights
Crohn’s disease (CD) is a chronic inflammatory condition of the gastrointestinal tract that affects people across the age spectrum but often starts in childhood or early adulthood
Our knowledge of younger patients experiences with the disease is limited; there is a lack of published studies that have explored the lived experiences of children with CD or that have examined any differences between pediatric and adult CD [8,9,10,11,12,13]
Data relating to the children of the seven non-dyad parents were collected; data is summarized for N = 38 children
Summary
Crohn’s disease (CD) is a chronic inflammatory condition of the gastrointestinal tract that affects people across the age spectrum but often starts in childhood or early adulthood. Our knowledge of younger patients experiences with the disease is limited; there is a lack of published studies that have explored the lived experiences of children with CD or that have examined any differences between pediatric and adult CD [8,9,10,11,12,13]. Awareness of these differences and similarities is important, to ensure we have a comprehensive picture of the disease and its trajectory from childhood into later life, but to ensure that the assessment of pediatric CD is relevant and meaningful. This is especially important in clinical trial settings where the ability of new drugs to improve the patient’s disease experience is under scrutiny
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