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Original research
Hospital utilisation in home palliative care: caregiver health, preparedness and burden associations
  1. Huong Q Nguyen1,
  2. Eric C Haupt1,
  3. Lewei Duan1,
  4. Anthony C Hou2,
  5. Susan E Wang3,
  6. Jeffrey D Mariano3,
  7. Jung-Ah Lee4 and
  8. Carmit McMullen5
  1. 1 Research and Evaluation, Kaiser Permanente Southern California, Pasadena, California, USA
  2. 2 Geriatrics, Palliative and Continuing Care, Kaiser Permanente Southern California, Los Angeles Medical Center, Los Angeles, California, USA
  3. 3 Geriatrics, Palliative and Continuing Care, Kaiser Permanente Southern California, West Los Angeles Medical Center, Los Angeles, California, USA
  4. 4 Sue & Bill Gross School of Nursing, University of California Irvine, Irvine, California, USA
  5. 5 Center for Health Research, Kaiser Permanente Northwest, Portland, Oregon, USA
  1. Correspondence to Dr Huong Q Nguyen, Kaiser Permanente Southern California Research and Evaluation, Pasadena, CA 91101, USA; huong.q2.nguyen{at}kp.org

Abstract

Background Prior studies show that family caregiver factors influence patient outcomes. The purpose of this analysis was to determine the association between family caregiver self-rated health, perception of preparedness and burden at the time of patient admission to home palliative care (HomePal) with downstream patient hospital utilisation and time to hospice enrolment and death.

Methods Data for this cohort study (n=441) were drawn from a trial testing two models of HomePal. Caregiver self-rated health, preparedness (Preparedness for Caregiving Scale, CPS) and burden (Zarit-12) were measured at admission to HomePal. Caregivers were categorised as having good/very good/excellent or fair/poor health, scoring above or below the CPS median score (23), or having no/mild (0–10), moderate (11-20) or high (>20) burden. Proportional hazard competing risk models assessed the association between caregiver factors with hospital utilisation (emergency department visits, observation and inpatient stays).

Results Patients whose caregivers reported poor health and low preparedness received more visits by home health aides and social workers, respectively (both, p<0.05). Adjusted models showed that worse caregiver health (HR: 0.69 (95% CI 0.52 to 0.92), p=0.01), low preparedness (HR: 0.73 (95% CI 0.57 to 0.94), p=0.01) and high burden (HR: 0.77 (95% CI 0.56 to 1.06), p=0.10) were associated with lower risk for hospital utilisation. There were no significant associations between caregiver factors with time to patient enrolment in hospice or death in adjusted models (both, p>0.05).

Conclusion Prospective studies are needed to understand how greater in-home supports for family caregivers with poor health could help achieve quality palliative care that aligns with families’ priorities.

Trial registration number NCT03694431; ClinicalTrials.gov.

  • family management
  • home care
  • service evaluation
  • supportive care
  • symptoms and symptom management

Data availability statement

Data are available upon reasonable request. Anonymised data that support the findings of this study may be made available from the investigative team in the following conditions: (1) agreement to collaborate with the study team on all publications, (2) provision of external funding for administrative and investigator time necessary for this collaboration, (3) demonstration that the external investigative team is qualified and has documented evidence of training for human subjects protections and (4) agreement to abide by the terms outlined in data use agreements between institutions.

https://doi.org/10.1136/bmjspcare-2021-003455

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    Data availability statement

    Data are available upon reasonable request. Anonymised data that support the findings of this study may be made available from the investigative team in the following conditions: (1) agreement to collaborate with the study team on all publications, (2) provision of external funding for administrative and investigator time necessary for this collaboration, (3) demonstration that the external investigative team is qualified and has documented evidence of training for human subjects protections and (4) agreement to abide by the terms outlined in data use agreements between institutions.

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    Footnotes

    • Contributors HQN and SEW designed the study. ECH assisted with data acquisition and data analysis. ECH analysed the data. All authors assisted with data interpretation, contributed substantially to manuscript preparation and provided their approval of the submitted manuscript. HQN is the guarantor and accepts full responsibility for the work and/or the conduct of the study, had access to the data, and controlled the decision to publish.

    • Funding This work was supported through a Patient-Centered Outcomes Research Institute (PCORI) Award (PLC-1609-36108).

    • Disclaimer All statements in this report, including its findings and conclusions, are solely those of the authors and do not necessarily represent the views of the Patient-Centred Outcomes Research Institute (PCORI), its Board of Governors or Methodology Committee.

    • Competing interests None declared.

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