Integrating patient- and caregiver-reported outcome measures into the daily care routines of specialised outpatient palliative care: a qualitative study (ELSAH) on feasibility, acceptability and appropriateness

Abstract Background The use of patient-reported outcome measures (PROM) and caregiver-reported outcome measures can raise the patient centeredness of treatment and improve the quality of palliative care. Nevertheless, the everyday implementation of self-report in patients and caregivers is complex,...

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Main Authors: Hannah Seipp, Jörg Haasenritter, Michaela Hach, Dorothée Becker, Dania Schütze, Jennifer Engler, Cornelia Ploeger, Stefan Bösner, Katrin Kuss
Format: Article
Language:English
Published: BMC 2022-05-01
Series:BMC Palliative Care
Subjects:
Online Access:https://doi.org/10.1186/s12904-022-00944-1
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author Hannah Seipp
Jörg Haasenritter
Michaela Hach
Dorothée Becker
Dania Schütze
Jennifer Engler
Cornelia Ploeger
Stefan Bösner
Katrin Kuss
author_facet Hannah Seipp
Jörg Haasenritter
Michaela Hach
Dorothée Becker
Dania Schütze
Jennifer Engler
Cornelia Ploeger
Stefan Bösner
Katrin Kuss
author_sort Hannah Seipp
collection DOAJ
description Abstract Background The use of patient-reported outcome measures (PROM) and caregiver-reported outcome measures can raise the patient centeredness of treatment and improve the quality of palliative care. Nevertheless, the everyday implementation of self-report in patients and caregivers is complex, and should be adapted for use in specific settings. We aimed to implement a set of outcome measures that included patient and caregiver self- and proxy-reported outcome measures in specialised outpatient palliative care (SOPC). In this study, we explore how the Integrated Palliative Outcome Scale (IPOS), IPOS Views on Care (IPOS VoC) and the Short-form Zarit Caregiver Burden Interview (ZBI-7) can be feasibly, acceptably and appropriately implemented in the daily care routines of SOPC. Methods Five SOPC teams were trained, and used the outcome measures in daily practice. Team members were mainly nurses and physicians. To investigate their feedback, we used a multi-method qualitative design consisting of focus groups with SOPC-team members (n = 14), field notes of meetings and conversations with the SOPC teams. In an iterative process, we analysed the findings using qualitative content analysis and refined use of the outcome measures. Results We found that integrating patient and caregiver outcome measures into daily care routines in SOPC is feasible. To improve feasibility, acceptability and appropriateness, the resulting burden on patients and relatives should be kept to a minimum, the usefulness of the measures must be understood, they should be used considerately, and administration must be manageable. We removed ZBI-7 from the set of measures as a result of feedback on its content and wording. Conclusions SOPC-team members have reservations about the implementation of PROM in SOPC, but with appropriate adjustments, its application in daily care is feasible, accepted and perceived as appropriate. Previous to use, SOPC-team members should be trained in how to apply the measures, in the design of manageable processes that include integration into electronic documentation systems, and in ongoing evaluation and support. They should also be taught how useful the measures can be. Trial registration May 19th, 2017, German Clinical Trials Register DRKS-ID: DRKS00012421 .
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spelling doaj.art-e1f5e664d49446e3a984349836c3daa22022-12-22T02:54:52ZengBMCBMC Palliative Care1472-684X2022-05-0121111210.1186/s12904-022-00944-1Integrating patient- and caregiver-reported outcome measures into the daily care routines of specialised outpatient palliative care: a qualitative study (ELSAH) on feasibility, acceptability and appropriatenessHannah Seipp0Jörg Haasenritter1Michaela Hach2Dorothée Becker3Dania Schütze4Jennifer Engler5Cornelia Ploeger6Stefan Bösner7Katrin Kuss8Department of General Practice and Family Medicine, Philipps-University of MarburgDepartment of General Practice and Family Medicine, Philipps-University of MarburgProfessional Association of Specialised Palliative Homecare in HesseProfessional Association of Specialised Palliative Homecare in HesseInstitute of General Practice, Goethe-University FrankfurtInstitute of General Practice, Goethe-University FrankfurtInstitute of General Practice, Goethe-University FrankfurtDepartment of General Practice and Family Medicine, Philipps-University of MarburgDepartment of General Practice and Family Medicine, Philipps-University of MarburgAbstract Background The use of patient-reported outcome measures (PROM) and caregiver-reported outcome measures can raise the patient centeredness of treatment and improve the quality of palliative care. Nevertheless, the everyday implementation of self-report in patients and caregivers is complex, and should be adapted for use in specific settings. We aimed to implement a set of outcome measures that included patient and caregiver self- and proxy-reported outcome measures in specialised outpatient palliative care (SOPC). In this study, we explore how the Integrated Palliative Outcome Scale (IPOS), IPOS Views on Care (IPOS VoC) and the Short-form Zarit Caregiver Burden Interview (ZBI-7) can be feasibly, acceptably and appropriately implemented in the daily care routines of SOPC. Methods Five SOPC teams were trained, and used the outcome measures in daily practice. Team members were mainly nurses and physicians. To investigate their feedback, we used a multi-method qualitative design consisting of focus groups with SOPC-team members (n = 14), field notes of meetings and conversations with the SOPC teams. In an iterative process, we analysed the findings using qualitative content analysis and refined use of the outcome measures. Results We found that integrating patient and caregiver outcome measures into daily care routines in SOPC is feasible. To improve feasibility, acceptability and appropriateness, the resulting burden on patients and relatives should be kept to a minimum, the usefulness of the measures must be understood, they should be used considerately, and administration must be manageable. We removed ZBI-7 from the set of measures as a result of feedback on its content and wording. Conclusions SOPC-team members have reservations about the implementation of PROM in SOPC, but with appropriate adjustments, its application in daily care is feasible, accepted and perceived as appropriate. Previous to use, SOPC-team members should be trained in how to apply the measures, in the design of manageable processes that include integration into electronic documentation systems, and in ongoing evaluation and support. They should also be taught how useful the measures can be. Trial registration May 19th, 2017, German Clinical Trials Register DRKS-ID: DRKS00012421 .https://doi.org/10.1186/s12904-022-00944-1Palliative Care [MeSH]Home Care Services [MeSH]Quality of Health Care [MeSH]Needs Assessment [MeSH]Qualitative Research [MeSH]Patient Outcome Assessment [MeSH]
spellingShingle Hannah Seipp
Jörg Haasenritter
Michaela Hach
Dorothée Becker
Dania Schütze
Jennifer Engler
Cornelia Ploeger
Stefan Bösner
Katrin Kuss
Integrating patient- and caregiver-reported outcome measures into the daily care routines of specialised outpatient palliative care: a qualitative study (ELSAH) on feasibility, acceptability and appropriateness
BMC Palliative Care
Palliative Care [MeSH]
Home Care Services [MeSH]
Quality of Health Care [MeSH]
Needs Assessment [MeSH]
Qualitative Research [MeSH]
Patient Outcome Assessment [MeSH]
title Integrating patient- and caregiver-reported outcome measures into the daily care routines of specialised outpatient palliative care: a qualitative study (ELSAH) on feasibility, acceptability and appropriateness
title_full Integrating patient- and caregiver-reported outcome measures into the daily care routines of specialised outpatient palliative care: a qualitative study (ELSAH) on feasibility, acceptability and appropriateness
title_fullStr Integrating patient- and caregiver-reported outcome measures into the daily care routines of specialised outpatient palliative care: a qualitative study (ELSAH) on feasibility, acceptability and appropriateness
title_full_unstemmed Integrating patient- and caregiver-reported outcome measures into the daily care routines of specialised outpatient palliative care: a qualitative study (ELSAH) on feasibility, acceptability and appropriateness
title_short Integrating patient- and caregiver-reported outcome measures into the daily care routines of specialised outpatient palliative care: a qualitative study (ELSAH) on feasibility, acceptability and appropriateness
title_sort integrating patient and caregiver reported outcome measures into the daily care routines of specialised outpatient palliative care a qualitative study elsah on feasibility acceptability and appropriateness
topic Palliative Care [MeSH]
Home Care Services [MeSH]
Quality of Health Care [MeSH]
Needs Assessment [MeSH]
Qualitative Research [MeSH]
Patient Outcome Assessment [MeSH]
url https://doi.org/10.1186/s12904-022-00944-1
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