Effectiveness of person‐ and family‐centred care transition interventions on patient‐ oriented outcomes: A systematic review

Abstract Aim The aim was to critically analyse the body of evidence regarding the effectiveness of PFCC transition interventions on the quality of care and the experience of patients. Design We conducted a systematic review using the Cochrane Handbook's guidelines and adhered to a standardized reporting format: Preferred Reporting Items for Systematic Reviews and Meta‐Analyses (PRISMA). Methods Four databases and grey literature were searched. Following a two‐step screening process, data from the eligible studies were extracted. Risk of bias and quality of the studies were also assessed. Narrative synthesis and vote counting were used for the data analysis. Results A total of 28 articles met our inclusion criteria. Interventions varied in regards to the extent of the PFCC focus and the comprehensiveness of the transition of care. Educating patients to promote self‐management was the most commonly included component and it was described in all 28 interventions.

. Sidani et al. (2014) have conceptualized PFCC as comprising elements of holistic care, collaborative care and responsive care. Patient and family engagement is integral to a PFCC approach and it has been identified as a key domain in an ideal transition from the hospital to the community environment (Burke et al., 2013) and as essential to improving overall patient care in our healthcare system (Carman et al., 2013;Manafo et al., 2018). This is supported by prior research that has found that patients who are more involved in the decision-making process related to their care have reduced anxiety and stress (Anderson et al., 1995;Veilleux et al., 2018, are better able to manage complex chronic conditions (Coleman et al., 2009;Epstein et al., 2010;Osborn & Squires, 2011) and have lower healthcare use (Charmel & Frampton, 2008;Hughes et al., 2018).
Although many PFCC transition interventions have been trialed (Anthony et al., 2005;Greenwald et al., 2007;Laugaland et al., 2012), care transitions from hospital to home continue to be fragmented and pose high safety risks (Backman et al., 2018;Forster et al., 2003;Werner et al., 2018). There is a need for additional research to review the evidence on PFCC transition interventions. Although there have been several reviews examining care transitions from hospital to home (Black & Duval, 2019;Dusek et al., 2015;Allen et al., 2014;Hansen et al., 2011, only one, to our knowledge, has focused specifically on the effectiveness of PFCC transition processes (Desai et al., 2015). In this study, Desai et al. (2015) reviewed N = 16 trials of adult and paediatric hospital to home transition interventions. The authors observed an association between tailored discharge education and patient outcomes in four paediatric emergency department to home studies. The authors also reported favourable patient outcomes for multifaceted interventions in the adult population that included a transition needs assessment (N = 4) or an individualized transition record (N = 6). However, this paper limited its search to studies conducted in one country, the United States, potentially limiting the number of studies in the review and their ability to draw conclusions about the effectiveness of PFCC focused interventions used worldwide.
In the present review, we expanded the search to include other countries and we broadened the search terms. Our research question was: What is the effect of PPFC interventions on the quality of care and the experience of patients during the transition from hospital to home?

| Research design and methodology
We conducted a systematic review (SR) of studies reporting the results of PFCC transition interventions on the quality of care and the experience of patients during care transitions between the hospital and home. This review was conducted as part of a larger research project from a published protocol (Backman et al., 2017).
We prepared this report in accordance with the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines (Moher et al., 2009), available in Supplementary Material: Table S1. This SR is registered with PROSPERO. Ethical approval was not applicable.

| Changes to protocol
In this paper, due to the large amount of data, we focused specifically on the patient-oriented outcomes (e.g. condition-specific knowledge, self-care behaviours, functional status, adverse events, quality of life, medication adherence, adherence to follow-up and satisfaction). The health system-specific outcomes (e.g. 30-day emergency department visits and 30-day readmissions) will be reported on in a subsequent paper.

| Study selection and eligibility criteria
Eligible articles were those that met the inclusion and exclusion criteria as follows:

| Population
The population of interest was the adult population (18 years of age or older).
The PFCC elements (Sidani et al., 2014) reported in each intervention were described. Trials required a minimum of one element from each of the holistic care, collaborative care and responsive care components for inclusion in the review; the full list was included to provide an indication of the extent of the PFCC focus of the interventions. Similarly, interventions were matched by the components of an ideal transition as described by Burke et al. (2013). This was done to provide an indication of the comprehensiveness of the intervention for care transitions.

| Risk of bias assessment
Study quality was assessed using the Cochrane Risk of Bias tool (Higgins et al., 2011). Two reviewers independently assessed the risk of bias of each included study with respect to the following seven domains: sequence generation, allocation concealment, blinding of participants and personnel, blinding of outcome assessment, missing outcome data, selective outcome reporting and other sources of bias. Disagreements were resolved by discussion and by consulting a third reviewer when necessary. Studies were evaluated as "low" (unlikely plausible risk of bias that could alter confidence in the results), "unclear" (plausible bias that raised a doubt of the validity of the results) or "high" (plausible bias that seriously weakened the confidence in the results) as per the criteria.

| Data analysis
A meta-analysis was not conducted due to the heterogeneity of the results, the diversity of outcomes reported and the variety of testing conditions under which accuracy measures were examined and reported among the studies included in the review. Therefore, we conducted a narrative synthesis and used a vote-counting approach for data analysis (Grimshaw et al., 2003). For vote counting, we counted the number of studies that resulted in statistically significant effects as well as the number of studies that showed non-significant effects for each outcome of interest (Grimshaw et al., 2003). To determine if a PFCC transition intervention was related to a specific outcome, we required a significant relationship to be present in a minimum of three articles between the PFCC transition intervention and the individual outcome (Godin et al., 2008). To supplement this approach, tables were developed to illustrate the magnitude of the effect for statistically significant results (Grimshaw et al., 2003).

| Study selection
We screened 6,127 unique titles and abstracts for potential eligibility after removing duplicates. Following screening, we excluded 5,571 articles and reviewed the remaining 556 full text. A total of 28 trials met the final inclusion criteria. The screening and selection process using a PRISMA flow chart is illustrated in Fig S1. Excluded studies (N = 528) and reasons for exclusion are provided in the Table S3. Studies were excluded most often because they had the wrong outcome or intervention, or the wrong population.  The interventions varied in the number of PFCC elements that they incorporated ranging from four to 19 of the possible 27 PFCC elements (Sidani et al., 2014). Twenty-one studies reported nine or fewer PFCC elements, six studies reported 10-18 elements and one study reported 19 items from the PFCC elements.

| Description of studies
The interventions also varied with regard to the comprehensiveness of the transition of care. Out of the 10 critical components of an ideal transition in care (Burke et al., 2013), interventions were reported as involving 1-9 of the components. Educating patients to promote self-management was the most commonly included component, and it was described in all 28 interventions.
Discharge planning was described in 24 trials, followed by availability, timeliness clarity and organization of information (N = 23) and monitoring and managing symptoms after discharge (N = 23).
Follow-up with outpatient providers was included in 16 trials, coordinating care among team members (N = 13) and enlisting help of social and community supports were mentioned in 13 trials and complete communication of information was reported in 10 trials. Medication safety was reported in 8 trials and advance care planning was not described in any studies included in this review.
Finally, thirteen studies (N = 13) included family and caregivers in the intervention either by targeting education, ensuring their presence, assessing their needs or connecting with them during follow-ups.

| Patient-oriented outcomes
Patient-oriented outcomes are reported in Table 2. Overall, 10 out of the 28 studies (35.7%) examined the relationship between PFCC transition interventions and self-care behaviours, 23 out of the 28 studies (82.1%) examined the link between PFCC transition interventions and health outcomes/ health status (quality of life, condition-specific health status, depression and anxiety/stress, falls, caregiver related measures), 11 out of the 28 studies (39.3%) looked at the link between PFCC and satisfaction with care and 6 out of the 28 (21.4%) studies examined the relationship between PFCC transition interventions and condition-specific knowledge or self-efficacy.

| Health outcomes/health status
A sub-group of 23 out of the 28 studies (82.1%) reported a health outcome or health status measure. Eleven studies out of the 23 assessed the patients' quality of life. Out of these 11, only five studies showed a significant improvement in quality of life (p < .001, Courtney et al., 2009); p = .002 (heart failure), Harrison et al., 2002;p < .05, Naylor et al., 2004; p = .01 (kidney disease), Chow & Wong, 2010;p < .05, Huang and Liang, 2005) (Table 3).

| Satisfaction related measures
Patient satisfaction related measures were assessed in 11 out of the 28 studies (39.2%). Out of these 11 studies, seven measured overall satisfaction. Only 3 of the 7 studies that assessed overall satisfaction showed a significant improvement (p < .01, Cajanding, 2017; Bostrom (1996) United States

Telephone Nursing Care Link Project
• Nurse-initiated telephone follow-up 2-3 days postdischarge and as required • Patient-initiated telephone follow-up using educational brochure as a guide. • A disease-specific handbook with information on the program, aims of therapy, checklist and FAQs was provided.

8-LOW Holistic (3)
• Identify patient's concerns and/or needs • Provide information regarding health promotion, illness prevention or lifestyle change to patient • Provide information on disease and self-management to patient

Collaborative (3)
• Explain to patient the treatment options and selfmanagement strategies available to manage the problem

5-LOWàHolistic (3)
• Identify patient's concerns and/or needs • Provide information regarding health promotion, illness prevention or lifestyle change to patient • Provide information on disease and self-management to • 2 interventions were designed with 8 face-to-face 1-hr sessions (2 prior to discharge)

1-Coping skills intervention:
• Clinical psychologist delivered activities to prepare individuals for discharge and to adjust postdischarge (Five of the eight sessions were individually tailored).

2-Self-management intervention:
• Occupational therapist delivered individualized educational activities aimed at assisting individuals to learn problem-solving skills, communicate with health professionals and adjust to life poststroke.

3-Usual care:
• Usual multidisciplinary assessment and treatment including education and advice before and throughout the discharge process

7-LOW Holistic (3)
• Assess patient's health values and goals • Identify patient's concerns and/or needs • Provide information on disease and self-management to patient

Collaborative (2)
• Promote discussion with patient to find a common understanding of what the problem is • Explain to patient the treatment options and selfmanagement strategies available to manage the problem

Responsive (2)
• Respond to patient's needs, beliefs, values and preferences • Modify the type, mode of delivery or dose of treatment or self-management strategy to be consistent with patient's needs and preferences

Mental health (2weeks)
Intervention patients reported higher improvement in mental health (6.7   during the first three months, with decline after active intervention was withdrawn.

| D ISCUSS I ON
Although PFCC has gained momentum worldwide, the biggest challenge is meaningfully engaging patient and family in the different elements of PFCC included in the holistic care, collaborative care and responsive care components (Sidani et al., 2014). In our review, all PFCC elements (Sidani et al., 2014) or all the critical components of an ideal transition (Burke et al., 2013) were not considered across the differ- Organizations need to consider PFCC as a partnership with all stakeholders including clinicians working in different healthcare sectors, patients and caregivers. There should be guidelines and policies in place to support all stakeholders and to hold accountable those organizations that fail to design such systems. Future research should focus on understanding the relationship between PFCC transition interventions including the specific PFCC elements and also the components of the "ideal transition" on patient-oriented outcomes.

| Strengths and limitations
Despite the systematic and rigorous methods used in this review, there are limitations. We only searched some of the grey literature databases and, as such, this review may not contain all the work done on this topic. Furthermore, only RCTs were included in this study. Since the review included a variety of PFCC transition interventions and patient-oriented outcome measures found, we used a vote-counting approach to synthesize the data. Vote counting has its limitations as it does not take into account the differential weights given to each study and it does not demonstrate an estimate of the effect size (Grimshaw et al., 2003).

RELE VAN CE TO CLINI C AL PR AC TICE
In this systematic review, we critically analysed the effect of PFCC transition interventions on patient-oriented outcomes and we identified gaps in the literature that could inform future intervention studies and that could aid in the development of measures to determine the effectiveness of care transitions from hospital to home.

ACK N OWLED G EM ENTS
Authors would like to thank Rebecca Balasa, Véronique Carrière, Juliana Choueiry, Camille Grandmont, Joëlle Héroux Giroux, Isabelle Kelly, Nadia Maisonneuve, Lauren Mulrooney and Karina Pelletier for their assistance with the systematic review.

CO N FLI C T O F I NTE R E S T
None declared.

AUTH O R S H I P
CB was a major contributor in writing the manuscript. CB and JC designed the project, performed data acquisition, analysis and interpretation. OD designed and ran the literature searches. MC, RD participated in the data collection. CB, JC and BS conducted the data analyses. All co-authors critically appraised and edited the manuscript. All authors also read and approved the final manuscript.

DATA AVA I L A B I L I T Y S TAT E M E N T
All data generated or analysed during this study is available in the manuscript.