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Spiritual distress: symptoms, quality of life and hospital utilisation in home-based palliative care


Objectives The purpose of this study was to use a spiritual screening question to quantify the prevalence of spiritual distress (SD) in a large cohort of seriously ill patients at admission to home-based palliative care (HBPC) and to examine the associations between SD with symptom burden, quality of life and hospital-based utilisation up to 6 months after admission to HBPC.

Methods Data for this cohort study (n=658) were drawn from a pragmatic comparative-effectiveness trial testing two models of HBPC. At admission to HBPC, SD was measured using a global question (0–10-point scale: none=0; mild=1–4; moderate-to-severe=5+); symptoms and quality of life were measured with the Edmonton Symptom Assessment Scale (ESAS) and PROMIS-10. Hospital utilisation was captured using electronic records and claims. Median regression and proportional hazard competing risk models assessed the association between SD with symptoms and quality of life, and hospital utilisation, respectively.

Results Nearly half of the patients/proxies reported some level of SD. Increasing SD was significantly associated with higher symptom burden (increase of 7–14 points on ESAS) and worse mental well-being (decrease of 2.7 to 4.6 points on PROMIS-10-mental) in adjusted models. Compared with patients/proxies who reported no SD, those with at least some level of SD were not at increased risk for hospital-based utilisation over a median follow-up period of 2 months.

Conclusion While SD is cross-sectionally associated with worse symptoms and mental well-being, it did not predict downstream hospital-based utilisation. Our results highlight the importance of assessing for and managing SD in patients with serious illness.

  • home care
  • symptoms and symptom management
  • quality of life
  • spiritual care

Data availability statement

Data are available on 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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