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A systematic review of patient-reported outcome measures in paediatric endocrinology
Richard G McGee1,2, Edward Y B Zhang3, Jennifer J G Tan3
1Department of Paediatrics, Gosford Hospital, Holden St, Gosford, NSW, 2250, Australia. richard.mcgee@newcastle.edu.au.
Insights
Patient reported outcome measures (PROMs) are vital in pediatric endocrinology. However, a review found limited and low-quality PROMs, highlighting the need for better tools to improve child healthcare.
Area of Science:
- Pediatric Endocrinology
- Health Outcomes Research
- Patient-Reported Outcome Measures (PROMs)
Background:
- Patient-reported outcome measures (PROMs) are crucial for assessing health status in pediatric endocrinology, especially when children cannot fully communicate their experiences.
- This study aimed to systematically review and evaluate existing PROMs relevant to pediatric endocrinology.
Purpose of the Study:
- To systematically search and appraise all available PROMs applicable to pediatric endocrinology.
- To create a curated resource of PROMs for healthcare professionals.
Main Methods:
- A systematic literature search was conducted across major databases (Cochrane Library, MEDLINE, WHO ICTRP, CINAHL) on May 20, 2022.
- Hand searching and expert contributions supplemented the database search.
- The COSMIN risk of bias checklist was used to assess the quality of identified PROMs.
Main Results:
- The initial search yielded 5003 papers; seven PROMs were included after exclusions.
- Six PROMs were specific to Type I Diabetes, and one was for Hypothyroidism.
- All reviewed PROMs received an 'inadequate' COSMIN score due to insufficient detail in their development.
Conclusions:
- The range and quality of current PROMs in pediatric endocrinology are limited.
- Further research and development of robust PROM tools are essential for enhancing patient care in pediatric endocrinology.
Context:
Patient reported outcome measures (PROMs) are useful tools in paediatric endocrinology to gauge health status in children, especially since they are often unable to clearly communicate it themselves. We aimed to systematically search and appraise all available PROMs relevant to paediatric endocrinology and provide a curated resource for health professionals to utilise.
Evidence Acquisition:
We identified PROMs in paediatric endocrinology by systematically searching the Cochrane Library, MEDLINE, World Health Organisation International Clinical Trials Registry Platform, and the Cumulative Index to Nursing and Allied Health Literature on May 20, 2022. Additional studies were located through hand searching and content area expert contributions. We assessed the quality of each PROM using the COSMIN risk of bias checklist.
Evidence Synthesis:
We identified 5003 papers in the initial search. After applying exclusion criteria we included seven PROMs in the review. Six PROMs were specific to Type I Diabetes and one to Hypothyroidism. We gave all studies an overall COSMIN score of 'inadequate' due to poorly detailed PROM development.
Conclusion:
The scope and quality of PROMs in paediatric endocrinology is limited. Further research and development of PROM tools are required in paediatric endocrinology to allow for improved patient care.
