Patient and caregiver experience in the transition from hospital to home - brainstorming results from group concept mapping: a patient-oriented study.

BACKGROUND: Improving the quality of care for patients who return home after a hospital stay is an international priority; however, few jurisdictions have engaged broadly with patients and caregivers to understand what most affects their experience transitioning home. We performed Ontario-wide group concept mapping, beginning with a brainstorming phase, to understand patient and caregiver priorities in the transition. METHODS: We used group concept mapping to engage patients and caregivers who had lived experience transitioning from hospital to home in Ontario in the previous 3 years. We report on the first phase, brainstorming, conducted over 10 weeks beginning Jan. 11, 2018 via an online survey or facilitated group discussion. Participants responded to a single focal prompt: "When leaving the hospital for home, some thing(s) that affected the experience were: ____." The study team identified recurrent concepts and overarching themes. Patients and caregivers informed the study design, recruitment and data interpretation. RESULTS: In all, 665 people (263 patients [39.5%], 352 caregivers [52.9%] and 50 people who were both patient and caregiver [7.5%]) participated in brainstorming online, and 71 people participated in 1 of 8 group discussions. Participants identified 6 key areas affecting their experience of transition from hospital to home: home and community care, the discharge process, medical follow-up after discharge, medications, patient and caregiver education, and the kindness and caring of the health care team in hospital. Most notable were challenges with the timeliness, sufficiency, reliability and consistency of publicly funded home care services. INTERPRETATION: Patients and caregivers from across Ontario noted a range of issues affecting their experience transitioning from hospital to home, particularly the quality and sufficiency of publicly funded home care. Our findings will be used to inform a provincial quality standard on the transition from hospital to home.

Patient and caregiver priorities in the transition from hospital to home: results from province-wide group concept mapping.

BACKGROUND: Patients and caregivers often face significant challenges when they are discharged home from hospital. We sought to understand what influenced patient and caregiver experience in the transition from hospital to home and which of these aspects they prioritised for health system improvement. METHODS: We conducted group concept mapping over 11 months with patients-and their caregivers-who were admitted to a hospital overnight in the last 3 years in Ontario, Canada and discharged home. Home included supportive housing, shelters and long-term care. Participants responded to a single focal prompt about what affected their experience during the transition. We summarised responses in unique statements. We then recruited participants to rate each statement on a five-point scale on whether addressing this gap should be a priority for the health system. The provincial quality agency recruited participants in partnership with patient, community and healthcare organisations. Participation was online, in-person or virtual. RESULTS: 736 participants provided 2704 responses to the focal prompt. Unique concepts were summarised in 52 statements that were then rated by 271 participants. Participants rated the following three statements most highly as a gap that should be a priority for the health system to address (in rank order): 'Not enough publicly funded home care services to meet the need', 'Home care support is not in place when arriving home from hospital' and 'Having to advocate to get enough home care'. The top priority was consistent across multiple subgroups. CONCLUSIONS: In a country with universal health insurance, patients and caregivers from diverse backgrounds consistently prioritised insufficient public coverage for home care services as a gap the health system should address to improve the transition from hospital to home.

Patient engagement in the development of best practices for transitions from hospital to home: a scoping review.

OBJECTIVES: To explore the extent of patient engagement in the development of best practice reports related to transitions from hospital to home. DESIGN: Scoping review. DATA SOURCES: Electronic databases (MEDLINE, EMBASE, CINAHL, Scopus, Trip Database, DynaMed Plus and Public Health Plus) and multiple provincial regulatory agency and healthcare organisation websites. ELIGIBILITY CRITERIA: We included best practice reports related to the transition from hospital to a long-term care facility, community dwelling or rehabilitation centre. We included documents disseminated in English between 1947 and 2019. DATA EXTRACTION AND SYNTHESIS: Two independent reviewers screened for eligibility and one extracted and analysed data using a data extraction tool we developed based on established patient engagement frameworks. Only records actively engaging patients were analysed (n=11). The methodological quality of actively engaging patients was assessed using domain 2 (item 5) of stakeholder involvement from the Appraisal of Guidelines for Research and Evaluation II (AGREE II) tool. RESULTS: The search yielded 1921 citations of which 23 met the inclusion criteria and were included for narrative synthesis. These were disseminated between 1995 and 2019, with 18 (78%) published after 2010. Most were conducted in North America (USA 43%, Canada 22%), Europe (UK 30%) and Australia (4%). Eleven (48%) actively involved patients, of which only two involved patients across all stages of development. Most involved patients through direct or indirect consultation. The mean AGREE II domain 2 item 5 score (of those that actively engaged patients) was 5.9 out of 7. CONCLUSIONS: Only half of existing best practice reports related to the transition from hospital to home actively involved patients in report development. However, the extent of patient engagement has been increasing over time. More organisations should strive to engage patients throughout the best practice development process and provide patients with opportunities for shared leadership.

The Canadian Neuromuscular Disease Registry: Connecting patients to national and international research opportunities.

INTRODUCTION: Patient registries serve an important role in rare disease research, particularly for the recruitment and planning of clinical trials. The Canadian Neuromuscular Disease Registry was established with the primary objective of improving the future for neuromuscular (NM) patients through the enablement and support of research into potential treatments. METHODS: In this report, we discuss design and utilization of the Canadian Neuromuscular Disease Registry with special reference to the paediatric cohort currently enrolled in the registry. RESULTS: As of July 25, 2017, there are 658 paediatric participants enrolled in the registry, 249 are dystrophinopathies (229 are Duchenne muscular dystrophy), 57 are myotonic dystrophy participants, 98 spinal muscular atrophy participants and 65 are limb girdle muscular dystrophy. A total of 175 patients have another NM diagnosis. The registry has facilitated 20 clinical trial inquiries, 5 mail-out survey studies and 5 other studies in the paediatric population. DISCUSSION: The strengths of the registry are discussed. The registry has proven to be an invaluable tool to NM disease research and has increased Canada's visibility as a competitive location for the conduct of clinical trials for NM therapies.