233 Supplement 1 - (continued) No. Author(s), year, country of study Study objective Study design Study duration Disease group Study setting Patients’ age group (yrs) Number of participants completing PREMs PREM used in the study Person completing the survey Administration method Quality score 39 Rahi, Jugnoo S; Manaras, Irene; Tuomainen, Helena; Hundt, Gillian Lewando, 2004, UK 39 To monitor changes in the health service experiences of parents and care providers following the introduction of a key worker service. Cross- sectional + qualitative 1 year Ophthalmic disorders Tertiary referral center of pediatric ophthalmology Mean age of 2 147 MPOC-56 Proxy Paper Good 40 Hargreaves, Dougal S; McDonagh, Janet E; Viner, Russell M, 2013, UK40 To assess the association between the PREMs criteria and reported patient satisfaction in national inpatient surveys. Cross- sectional NR General Inpatient care unit 12-17 (YPS); 16-19 (IS) 7657 (YPS); 988 (IS) Young Patient Survey (YPS); Inpatient Survey (IS) Patient Paper Fair 41 Hargreaves, Dougal S; Sizmur, Steve; Pitchforth, Jacqueline; Tallett, Amy; Toomey, Sara L; Hopwood, Bridget; Schuster, Mark A; Viner, Russell M, 2018, UK41 To quantify the number of patients that completed the CYP PREM portion on their own and how their responses resemble their parents’ experience. Secondly, CYP responses were separated and compared according to how they were completed (by the child, parent, or together). Cross- sectional 2 months General Inpatient care unit 8-15 6204 Children and Young People’s Inpatient and Day Case Survey 2014 Both the patient and the proxy Paper Good 8
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