Elizabeth Rosted1,2, Birgit Aabom3, Bibi Hølge-Hazelton4,5, Mette Raunkiær6. 1. Department of Oncology and Palliative Care, Zealand University Hospital, Sygehusvej 10, 4000, Roskilde, Denmark. eros@regionsjaelland.dk. 2. Department of Regional Health Research, University of Southern Denmark, J. B. Winsløws Vej 19, 5000, Odense C, Denmark. eros@regionsjaelland.dk. 3. Department of Oncology and Palliative Care, Zealand University Hospital, Sygehusvej 10, 4000, Roskilde, Denmark. 4. Department of Regional Health Research, University of Southern Denmark, J. B. Winsløws Vej 19, 5000, Odense C, Denmark. 5. Department of Research Support, Zealand University Hospital, Munkesøvej 14, 4000, Roskilde, Denmark. 6. REHPA, The Danish Knowledge Centre for Rehabilitation and Palliative Care, Odense University Hospital and University of Southern Denmark, Nyborg, Denmark.
Abstract
BACKGROUND: Ideally, patients with life-threatening illness who are suffering from multiple symptoms and reduced quality of life should receive palliative care that addresses their specific needs. The many well-defined clinical pathways may not always leave room for a person-centred and individual approach with respect to symptom control, psychosocial and spiritual support, and practical issues. In deciding how to organize outpatient specialist palliative care (SPC), it is relevant to include the perspectives of both patients and families. Thus, the aim of this study was to compare two models for outpatient SPC: first contact between patient, next-of-kin and doctor/nurse in the form of a home visit; and first visit in the hospital setting. METHOD: The study was a comparative mixed methods study with follow-up at one and 3 months. It started with a quantitative strand in the form of a 38-item questionnaire. Data were analysed using linear mixed effects models, with maximum likelihood estimation for each outcome variable. The repeated measurements on patient level were modelled by including random intercepts of patients in the mixed model. RESULTS: In total, 190 participants were enrolled, of whom 102 answered the first questionnaire. No differences were found between the two SPC interventions when development in satisfaction with care, communication or overall quality of life were compared. At baseline, a significantly higher score for satisfaction was found, in favour of first visit taking place in the hospital setting (65.91 vs. 55.83; p = 0.03) measured by FAMCARE-P16, and more patients were satisfied with availability of nurses and their abilities to listen and communicate than of doctors. CONCLUSION: Specialist palliative care is in request for many patients in the late phase of their disease. We found no significant differences in satisfaction with care, communication with health professionals or in overall quality of life between the two models. This may imply that access to SPC is more important than the model that is applied, and that a person-centred approach together with time available may matter more than the context. These two factors should be considered when implementing SPC.
BACKGROUND: Ideally, patients with life-threatening illness who are suffering from multiple symptoms and reduced quality of life should receive palliative care that addresses their specific needs. The many well-defined clinical pathways may not always leave room for a person-centred and individual approach with respect to symptom control, psychosocial and spiritual support, and practical issues. In deciding how to organize outpatient specialist palliative care (SPC), it is relevant to include the perspectives of both patients and families. Thus, the aim of this study was to compare two models for outpatient SPC: first contact between patient, next-of-kin and doctor/nurse in the form of a home visit; and first visit in the hospital setting. METHOD: The study was a comparative mixed methods study with follow-up at one and 3 months. It started with a quantitative strand in the form of a 38-item questionnaire. Data were analysed using linear mixed effects models, with maximum likelihood estimation for each outcome variable. The repeated measurements on patient level were modelled by including random intercepts of patients in the mixed model. RESULTS: In total, 190 participants were enrolled, of whom 102 answered the first questionnaire. No differences were found between the two SPC interventions when development in satisfaction with care, communication or overall quality of life were compared. At baseline, a significantly higher score for satisfaction was found, in favour of first visit taking place in the hospital setting (65.91 vs. 55.83; p = 0.03) measured by FAMCARE-P16, and more patients were satisfied with availability of nurses and their abilities to listen and communicate than of doctors. CONCLUSION: Specialist palliative care is in request for many patients in the late phase of their disease. We found no significant differences in satisfaction with care, communication with health professionals or in overall quality of life between the two models. This may imply that access to SPC is more important than the model that is applied, and that a person-centred approach together with time available may matter more than the context. These two factors should be considered when implementing SPC.
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