The search identified 16,134 records (Figure 2), and 172 reports were included after the screening and selection process (Figure 2). In addition to the regular selection process, first author SW divided the reports according to objectives 1 (24 reports) and 2 (148 reports, 35 reports excluded during data extraction, leaving 113 reports for inclusion). This was done because the scientific methods for reports to answer objective 1 needed to be qualitative, and the methods relevant for answering objective 2 needed to be quantitative observational, development, or validation reports.
Figure 2 – PRISMA Flowchart
Relevant Domains (Results for Objective 1)
For objective one, we included 24 reports (Appendix 6),30–53 which included: 10 (42%) systematic reviews,34,36,37,40,43,44,46,47,49,51 six (25%) scoping reviews,32,38,41,48,50,53 Four (17%) meta syntheses,30,39,52 three (13%) integrated reviews,33,35,42 one (4%) narrative review,54 and one (4%) qualitative review45 that provided information on relevant domains and/or themes for assessing patients´ experiences with care across healthcare settings. The number of identified themes ranged from two32 to 13,50 with most articles reporting three themes.34,39,52,53 When summarizing and describing themes from the included reports, we found that the themes could be organized in two distinct domains; I) A system/organizational domain; II) A human-relational domaine. Each of these domains encompassed six themes; thus, we identified 12 relevant themes as illustrated in Figure 3.
Figure 3 – Domains, Themes, and Items Relevant for Assessing Patients’ Experiences of Pathways Across Healthcare Settings.
Existing Patient-Reported Experience Measures (Results for Objective 2)
For objective two, we included 113 (Appendix 6)6–13,55–159 reports that described 109 unique PREMs (Appendix 4). However, 80 (73%) PREMs were excluded during data extraction as they referred to other aspects of care quality than transitions between healthcare settings or otherwise deviated from our specified phenomenon (Appendix 5). The Consumer Assessment of Healthcare Providers and Systems (CAHPS)160–163 questionnaires were most frequently referred to,6,7,9,11,56,61,63,66 but we did not find the items relevant according to the construct definition in objective 1. The two relevant PREMs that were most frequently referred to were Nijmegen Continuity Questionnaire8,12,72,77,105,119,151,152 and Patient Assessment of Chronic Illness Care (PACIC).6,11,12,78,80,85,109,112,164
In the data extraction process, we identified different ways of formulating items. Some items were worded from a medical system perspective on quality i.e. “My physical pain was controlled as well as possible”,165 whereas others were articulated from a patient-centred perspective i.e. “My treatment fits my needs”.124 Yet, other items were specific to a certain contextual system infrastructure i.e. “The specialist makes out the first prescription for the treatment he/she prescribes me”,95 or they were disease-specific.114 However, we did identify PREMs with a more generic wording such as, “Were there times when you had to repeat information that should have been in your care records?”.166
Adequate reflection of patients’ experience (results for objective 3)
We extracted 29 PREMs that pertained to patient-experience of quality of transitions in healthcare settings. To assess the relevance and comprehensiveness of the identified PREMs, the items of each PREM were plotted according to the 12 subthemes identified for objective 1 (table 2). Twenty-one PREMs had items related to at least five of the 12 subthemes (table 2). To focus our review on the most comprehensive PREMs, we critically appraised the selected 21 PREMs. The Alberta Continuity of Services Scale – Mental Health (ACSS-MH),124 the Person-Centered Coordinated Care Experience Questionnaire (P3CEQ),148 and the Patient Experience of Integrated Care Scale (PEICS)123 had adequate content validity, however, they were disease-specific and/or did not have items in all themes identified in objective 1 (table 2). The remaining 16 PREMs had doubtful or inadequate content validity.
Table 2 – Comprehensiveness and Content Validity of Existing PREMs for Assessment of Patients’ Experiences of the Quality of Transitions in Healthcare Settings.