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Implementing routine medical and mental health screening in children and adolescents with inflammatory bowel disease
Marije van Dalen1,2, Martha A C van Gaalen1, Marein M Favejee3
1Department of Paediatric Gastroenterology, Erasmus MC Sophia Children's Hospital, Rotterdam, the Netherlands.
Insights
Implementing patient-reported outcome measures (PROMs) in pediatric inflammatory bowel disease (IBD) clinics is feasible. However, optimizing PROM length and frequency is crucial for better patient experience and mental health screening in IBD care.
Area of Science:
- Pediatric Gastroenterology
- Clinical Psychology
- Health Services Research
Background:
- Children with inflammatory bowel disease (IBD) often experience mental health challenges like anxiety and depression.
- Routine mental health screening is recommended for pediatric IBD patients.
- Patient-reported outcome measures (PROMs) can aid in monitoring symptoms and quality of life.
Purpose of the Study:
- To describe the implementation of PROMs in a pediatric IBD outpatient clinic.
- To assess the feasibility and user experience of integrating PROMs into routine care.
- To evaluate the adherence and satisfaction rates with PROM usage.
Main Methods:
- PROMs assessing anxiety, depression, fatigue, pain, and quality of life were distributed to patients (aged 8+) and parents before appointments.
- PROMs were integrated into electronic health records.
- A user experience survey was administered to patients who completed PROMs on at least two occasions.
Main Results:
- 44.7% adherence rate with 175 patients/parents completing at least one PROM.
- Most users were satisfied with the patient portal and provider discussions.
- Some patients found the PROMs too long or too frequent; 82% reported pain/fatigue, and 20% reported anxiety/depression symptoms.
Conclusions:
- Implementing PROMs in pediatric IBD care is feasible.
- The length and frequency of PROMs require optimization for better patient engagement.
- Careful selection of PROMs is essential for effective use in clinical practice.
Objectives:
Living with inflammatory bowel disease (IBD) can have a significant impact on children. Many children with IBD experience symptoms of anxiety or depression. Routine screening for mental health has been recommended. This preregistered study aimed to describe the implementation of patient-reported outcome measures (PROMs) in routine healthcare at an outpatient IBD clinic, as well as assess its feasibility.
Methods:
Before every outpatient clinic appointment, PROMs were distributed to all patients aged 8 and older, as well as their parents. PROMs related to anxiety, depression, fatigue, pain and IBD-related quality of life were selected by a paediatric gastroenterologist and psychologist, and integrated into electronic health records. Patients who completed PROMs on two occasions were invited to complete a user experience survey, focussing on their experiences with the PROMs.
Results:
A total of 2910 questionnaires were distributed. Adherence was 44.7%, with 175 patients or parents completing at least one questionnaire. User experience results of 24 patients showed they were satisfied with both the patient portal and the discussion with the healthcare provider. Five patients perceived the length of the questionnaires as too long, or as having to complete the questionnaires too frequently. Outcomes of 114 patients with 187 sets of questionnaires, described in the supplement, showed that up to 82% reported pain and/or fatigue. About 20% of patients reported symptoms of anxiety and/or depression.
Conclusions:
Implementation of PROMs is feasible, but the length and frequency of PROMs can be improved. Healthcare professionals wanting to work with PROMs should carefully decide which PROMs to select.
Trial Identification:
This study was registered prospectively on the Open Science Framework (OSF), https://osf.io/ef8wm/?view_only=67b4d7e55f684364b8a338fb1898e841.
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