227 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 16 Stefansdottir, Sara; Thora Egilson, Snaefridur, 2016, Iceland16 To assess parental and therapist perceptions of FCS, the factors that influence parental satisfaction with care, and how parents understood the service. Mixed methods 1 year Physical rehabilitation Outpatient care 0-18 236 MPOC-32 Proxy Electronic Fair 17 Siebes, R C; Wijnroks, L; Ketelaar, M; van Schie, P E M; Gorter, J W; Vermeer, A, 2007, Netherlands17 To describe parental involvement in their child’s rehabilitation, their satisfaction with treatment quality, and ideas that they have pertaining to increasing parental involvement in rehabilitation. Longitudinal mixed methods Phase 1:1 year 7 months, Phase 3: 6 months Physical rehabilitation Outpatient care 1-20 679 MPOC-56 Proxy NR Fair 18 Van Riper M., 2001, USA18 To assess maternal perceptions of their patient-provider relationship and how this relates to patient well being. Cross- sectional NR Prematurity NICU NR 55 Family-Provider Relationships Instrument- NICU (FAMPRO- NICU) Proxy Paper Fair 19 Nieman, Carrie L; Benke, James R; Ishman, Stacey L; Smith, David F; Boss, Emily F, 2014, USA19 To evaluate race and insurancebased disparities in PREM participation. Cross- sectional 7 months Otolaryngologic diseases Tertiary otolaryngology clinic 0-17 130 Press Ganey Medical Practice Survey Proxy Paper and electronic Good 8
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