Patient participation in end-stage kidney disease care: variation over time and effects of staff-directed interventions - a quasi-experimental study
Abstract Background Among those elements establishing decent quality of care from a patient perspective, opportunities to participate in accord with one’s individual needs and preferences are central. To date, little is known the extent of preference-based patient participation in kidney care, and w...
| Main Authors: | , , , , |
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| Format: | Article |
| Language: | English |
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BMC
2023-09-01
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| Series: | BMC Nephrology |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s12882-023-03313-z |
| _version_ | 1797453629528997888 |
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| author | Caroline Hurtig Marcus Bendtsen Liselott Årestedt Fredrik Uhlin Ann Catrine Eldh |
| author_facet | Caroline Hurtig Marcus Bendtsen Liselott Årestedt Fredrik Uhlin Ann Catrine Eldh |
| author_sort | Caroline Hurtig |
| collection | DOAJ |
| description | Abstract Background Among those elements establishing decent quality of care from a patient perspective, opportunities to participate in accord with one’s individual needs and preferences are central. To date, little is known the extent of preference-based patient participation in kidney care, and what facilitates optimal conditions. This study investigated i) preference-based patient participation in kidney care over time, and ii) the effects of interventions designed to enhance person-centred patient participation. Methods A quasi-experimental study was conducted across nine kidney care sites in southeast Sweden. A cohort of 358 patients with stage IV chronic kidney disease (eGRF 15–19 ml/min) or V (eGRF < 15 mL/min) entered the study. Of these, 245 patients (with kidney replacement therapy or intermittent outpatient visits only) completed a survey on patient participation at four time points: every six months from August 2019 to May 2021, patients reported their preferences for and experiences of participation using the validated Patient Preferences for Patient Participation tool, the 4Ps. Between the first and second data collection points, interventions were provided for designated staff to facilitate person-centred participation, using two strategies for two subgroups at three sites each: the managers receiving a bundle of information via e-mail on patient participation in a standard dissemination procedure (three sites), or an additional half-year support program for implementation offered to 1–2 staff per site (three sites), with no intervention for a control group (three sites). The differences in 4Ps data between groups were analysed using multilevel ordinal regression. Results Over time and across all sites, most patients’ experiences of participation fully or almost fully matched their engagement preferences (57%–90%). Still, up to 12% of patient reports indicated that their preferences and experiences were insufficiently matched: in these cases, the patients had preferred to be more involved than they had experienced, for example, in making healthcare plans and setting health-related goals. The interventions did not affect the levels of preference-based participation, but patients in the control group sites had slightly more consistent matches. Conclusions Living with kidney failure necessitates patient engagement, but opportunities to participate in accordance with one’s preferences are not fully provided for all patients. Additional efforts to support a common understanding and to ensure person-centred patient participation is still needed. |
| first_indexed | 2024-03-09T15:25:35Z |
| format | Article |
| id | doaj.art-b6dceda4f5f74e7f9abdb04d31b1578b |
| institution | Directory Open Access Journal |
| issn | 1471-2369 |
| language | English |
| last_indexed | 2024-03-09T15:25:35Z |
| publishDate | 2023-09-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Nephrology |
| spelling | doaj.art-b6dceda4f5f74e7f9abdb04d31b1578b2023-11-26T12:35:37ZengBMCBMC Nephrology1471-23692023-09-0124111310.1186/s12882-023-03313-zPatient participation in end-stage kidney disease care: variation over time and effects of staff-directed interventions - a quasi-experimental studyCaroline Hurtig0Marcus Bendtsen1Liselott Årestedt2Fredrik Uhlin3Ann Catrine Eldh4Department of Health, Medicine and Caring Sciences, Linköping UniversityDepartment of Health, Medicine and Caring Sciences, Linköping UniversityDepartment of Health and Caring Sciences, Linnaeus UniversityDepartment of Health, Medicine and Caring Sciences, Linköping UniversityDepartment of Health, Medicine and Caring Sciences, Linköping UniversityAbstract Background Among those elements establishing decent quality of care from a patient perspective, opportunities to participate in accord with one’s individual needs and preferences are central. To date, little is known the extent of preference-based patient participation in kidney care, and what facilitates optimal conditions. This study investigated i) preference-based patient participation in kidney care over time, and ii) the effects of interventions designed to enhance person-centred patient participation. Methods A quasi-experimental study was conducted across nine kidney care sites in southeast Sweden. A cohort of 358 patients with stage IV chronic kidney disease (eGRF 15–19 ml/min) or V (eGRF < 15 mL/min) entered the study. Of these, 245 patients (with kidney replacement therapy or intermittent outpatient visits only) completed a survey on patient participation at four time points: every six months from August 2019 to May 2021, patients reported their preferences for and experiences of participation using the validated Patient Preferences for Patient Participation tool, the 4Ps. Between the first and second data collection points, interventions were provided for designated staff to facilitate person-centred participation, using two strategies for two subgroups at three sites each: the managers receiving a bundle of information via e-mail on patient participation in a standard dissemination procedure (three sites), or an additional half-year support program for implementation offered to 1–2 staff per site (three sites), with no intervention for a control group (three sites). The differences in 4Ps data between groups were analysed using multilevel ordinal regression. Results Over time and across all sites, most patients’ experiences of participation fully or almost fully matched their engagement preferences (57%–90%). Still, up to 12% of patient reports indicated that their preferences and experiences were insufficiently matched: in these cases, the patients had preferred to be more involved than they had experienced, for example, in making healthcare plans and setting health-related goals. The interventions did not affect the levels of preference-based participation, but patients in the control group sites had slightly more consistent matches. Conclusions Living with kidney failure necessitates patient engagement, but opportunities to participate in accordance with one’s preferences are not fully provided for all patients. Additional efforts to support a common understanding and to ensure person-centred patient participation is still needed.https://doi.org/10.1186/s12882-023-03313-zChronic kidney failureEnd-stage kidney diseasePatient participationPatient-centred carePatient preferencePerson-centred care |
| spellingShingle | Caroline Hurtig Marcus Bendtsen Liselott Årestedt Fredrik Uhlin Ann Catrine Eldh Patient participation in end-stage kidney disease care: variation over time and effects of staff-directed interventions - a quasi-experimental study BMC Nephrology Chronic kidney failure End-stage kidney disease Patient participation Patient-centred care Patient preference Person-centred care |
| title | Patient participation in end-stage kidney disease care: variation over time and effects of staff-directed interventions - a quasi-experimental study |
| title_full | Patient participation in end-stage kidney disease care: variation over time and effects of staff-directed interventions - a quasi-experimental study |
| title_fullStr | Patient participation in end-stage kidney disease care: variation over time and effects of staff-directed interventions - a quasi-experimental study |
| title_full_unstemmed | Patient participation in end-stage kidney disease care: variation over time and effects of staff-directed interventions - a quasi-experimental study |
| title_short | Patient participation in end-stage kidney disease care: variation over time and effects of staff-directed interventions - a quasi-experimental study |
| title_sort | patient participation in end stage kidney disease care variation over time and effects of staff directed interventions a quasi experimental study |
| topic | Chronic kidney failure End-stage kidney disease Patient participation Patient-centred care Patient preference Person-centred care |
| url | https://doi.org/10.1186/s12882-023-03313-z |
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