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Patient and caregiver priorities in the transition from hospital to home: results from province-wide group concept mapping
  1. Tara Kiran1,2,3,4,5,
  2. David Wells5,
  3. Karen Okrainec4,6,7,
  4. Carol Kennedy5,
  5. Kimberly Devotta3,
  6. Gracia Mabaya5,
  7. Lacey Phillips5,
  8. Amy Lang5,
  9. Patricia O'Campo3,8
  1. 1 Department of Family and Community Medicine, St. Michael's Hospital, Toronto, Ontario, Canada
  2. 2 Department of Family and Community Medicine, University of Toronto, Toronto, Ontario, Canada
  3. 3 MAP Centre for Urban Health Solutions, St. Michael's Hospital, Toronto, Ontario, Canada
  4. 4 Institute of Health Policy, Management, and Evaluation, University of Toronto, Toronto, Ontario, Canada
  5. 5 Ontario Health, Quality Business Unit (formerly Health Quality Ontario), Toronto, Ontario, Canada
  6. 6 Department of Medicine, University Health Network, Toronto, Ontario, Canada
  7. 7 Department of Medicine, University of Toronto, Toronto, Ontario, Canada
  8. 8 Dalla Lana School of Public Health, University of Toronto, Toronto, Ontario, Canada
  1. Correspondence to Dr Tara Kiran, Department of Family and Community Medicine, St. Michael's Hospital, 30 Bond Street, Toronto, Ontario, Canada; tara.kiran{at}


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.

  • healthcare quality improvement
  • health policy
  • health services research
  • hospital medicine
  • transitions in care

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  • Twitter @tara_kiran, @drkokrainec, @Amy_Lang

  • Contributors TK conceived of the study. TK, DW, AL and PO designed the study. TK, DW and AL recruited participants and supported data collection. TK, DW, KO, CK, KD, GM, LP and PO analysed the data and together with participants, interpreted the results. TK drafted the manuscript and all authors critically reviewed it. All authors approve the final submitted version of the manuscript.

  • Funding Dr. Kiran is supported as a Clinician Scientist by the Department of Family and Community Medicine at the University of Toronto and at St. Michael’s Hospital. She is the Fidani Chair in Improvement and Innovation at the University of Toronto. Dr. Kiran is also supported by Health Quality Ontario and the Canadian Institutes of Health Research as an Embedded Clinician Researcher. This study was funded by the Embedded Clinician Researcher Award.

  • Competing interests At the time of writing, DW, CK, GM, LP, and AL were all employees and TK an embedded clinician researcher at Health Quality Ontario.

  • Patient consent for publication Not required.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data availability statement De-identified data is available on request by contacting the corresponding author.