Patient-reported outcome measures (PROMs) in paediatric ophthalmology: a systematic review

Abstract

198/200; Main text 4099/4000. Refs 85; Tables 1; Figures 1; Appendices 7. 2 CHESS PROMs review Cephalgia FTC:110117 Re-submit 240517 Tables edited 270717 Structured Abstract: (198/200) Aims To critically appraise, compare and synthesise the quality and acceptability of multi-item PROMs for adults with chronic or episodic headache. Methods Systematic literature searches of major databases (1980-2016) to identify published evidence of PROM measurement and practical properties. Data on study quality (COSMIN), measurement and practical properties per measure was extracted and assessed against accepted standards to inform an evidence synthesis. Results From 10,903 reviewed abstracts, 103 articles were assessed in full; 46 provided evidence for 23 PROMs: eleven specific to the health-related impact of migraine (n=5) or headache (n=6); six assessed migraine-specific treatment response/satisfaction; six were generic measures. Evidence for measurement validity and score interpretation was strongest for two measures of impact-Migraine-Specific Quality of Life Questionnaire (MSQ v2.1) and Headache Impact Test 6-item (HIT-6), and one of treatment response-the Patient Perception of Migraine Questionnaire (PPMQ-R). Evidence of reliability was limited, but acceptable for the HIT-6. Responsiveness was rarely evaluated. Evidence for the remaining measures was limited. Patient involvement was limited and poorly reported. Conclusion Whilst evidence is limited, three measures have acceptable evidence of reliability and validity-HIT-6, MSQ v2.1 and PPMQ-R. Only the HIT-6 has acceptable evidence supporting its completion by all 'headache' populations.

A patient led, international study of long term outcomes of esophageal atresia: EAT 1

“…Regular antibiotic usage has shown similar decreasing trend in the use of with 17% of 0-10 year olds reporting regularly needing antibiotics, falling to 9% (11)(12)(13)(14)(15)(16)(17) and 5% (>18) in the older age groups respectively.…”

“…The current literature tends to be limited to small national [4,9] and institutional datasets or meta-analysis of such studies [8]. Patient reported outcomes (PROMS), as an adjunct to reporting of outcomes by physicians and surgeons are becoming increasingly recognised as very important for improving care in a variety of conditions [11,12].…”

Uncorrected refractive error and education

“…Challenges within the area of vision specific PROMs in children are substantial. 13 However, generic and vision specific measures of function and quality of life exist and should be used in future investigations of the adverse effects of uncorrected refractive error. Academic performance and attainment are the combined result of a complex interplay of biological, sociological, environmental, and psychological factors.…”

One size doesn’t fit all: time to revisit patient-reported outcome measures (PROMs) in paediatric ophthalmology?

“…29,30 In 2013 we completed a systematic review of available childappropriate PROMs for use in paediatric ophthalmology. 21 In total, we identified 17 measures, 6 of which were suitable specifically for children and young people with visually impairing disorders as listed in Table 1 (for quality assessment refer to the existing review 21 ). The rest are targeted to specific ophthalmic conditions.…”

“…Thus, we undertook a review of the literature in this area, complemented by drawing on experimental data and experience from our own programme of research developing a suite of age-appropriate vision-specific PROMs of two types, one assessing vision-related quality of life (VQoL) 19 and the other functional vision (FV) 20 of children and young people with VI. Although the need for such measures is widely accepted, the recent rush to develop vision-specific, child-centred PROMs 21 has not been fully informed by understanding of the characteristics and needs of visually impaired children as questionnaire respondents. We present here a synthesis of the literature with lessons learned from our research, so as to spark debate about the direction of travel for PROMs for childhood visual disability.…”