Development and Acceptability of a Kidney Therapy Decision Aid for Patients Aged 75 Years and Older: A Design-Based Research Involving Patients, Caregivers, and a Multidisciplinary TeamPlain Language Summary
Rationale & Objective: Many older adults prefer quality of life over longevity, and some prefer conservative kidney management (CKM) over dialysis. There is a lack of patient-decision aids for adults aged 75 years or older facing kidney therapy decisions, which not only include information o...
| Main Authors: | , , , , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
Elsevier
2023-07-01
|
| Series: | Kidney Medicine |
| Subjects: | |
| Online Access: | http://www.sciencedirect.com/science/article/pii/S2590059523000870 |
| _version_ | 1797802785783152640 |
|---|---|
| author | Fahad Saeed Spencer Dahl Robert K. Horowitz Paul R. Duberstein Ronald M. Epstein Kevin A. Fiscella Rebecca J. Allen |
| author_facet | Fahad Saeed Spencer Dahl Robert K. Horowitz Paul R. Duberstein Ronald M. Epstein Kevin A. Fiscella Rebecca J. Allen |
| author_sort | Fahad Saeed |
| collection | DOAJ |
| description | Rationale & Objective: Many older adults prefer quality of life over longevity, and some prefer conservative kidney management (CKM) over dialysis. There is a lack of patient-decision aids for adults aged 75 years or older facing kidney therapy decisions, which not only include information on dialysis and CKM but also encourage end-of-life planning. We iteratively developed a paper-based patient-decision aid for older people with low literacy and conducted surveys to assess its acceptability. Study Design: Design-based research Setting and Participants: Informed by design-based research principles and theory of behavioral activation, a multidisciplinary team of experts created a first version of the patient-decision aid containing 2 components: (1) educational material about kidney therapy options such as CKM, and (2) a question prompt list relevant to kidney therapy and end-of-life decision making. On the basis of the acceptability input of patients and caregivers, separate qualitative interviews of 35 people receiving maintenance dialysis, and with the independent feedback of educated layperson, we further modified the patient-decision aid to create a second version. Analytical Approach: We used descriptive statistics to present the results of acceptability surveys and thematic content analyses for patients’ qualitative interviews. Results: The mean age of patients (n=21) who tested the patient-decision aid was 80 years and the mean age of caregivers (n=9) was 70 years. All respondents held positive views about the educational component and would recommend the educational component to others (100% patients and caregivers). Most of the patients reported that the question prompt list helped them put concerns into words (80% patients and 88% caregivers) and would recommend the question prompt list to others (95% patients and 100% caregivers). Limitations: Single-center study Conclusions: Both components of the patient-decision aid received high acceptability ratings. We plan to launch a larger effectiveness study to test the outcomes of a decision-supporting intervention combining the patient-decision aid with palliative care-based decision coaching. |
| first_indexed | 2024-03-13T05:10:55Z |
| format | Article |
| id | doaj.art-66acc11266e045429ac6568f53d681c8 |
| institution | Directory Open Access Journal |
| issn | 2590-0595 |
| language | English |
| last_indexed | 2024-03-13T05:10:55Z |
| publishDate | 2023-07-01 |
| publisher | Elsevier |
| record_format | Article |
| series | Kidney Medicine |
| spelling | doaj.art-66acc11266e045429ac6568f53d681c82023-06-16T05:10:37ZengElsevierKidney Medicine2590-05952023-07-0157100671Development and Acceptability of a Kidney Therapy Decision Aid for Patients Aged 75 Years and Older: A Design-Based Research Involving Patients, Caregivers, and a Multidisciplinary TeamPlain Language SummaryFahad Saeed0Spencer Dahl1Robert K. Horowitz2Paul R. Duberstein3Ronald M. Epstein4Kevin A. Fiscella5Rebecca J. Allen6Department of Medicine, Division of Nephrology, University of Rochester School of Medicine and Dentistry, Rochester, NY; Department of Medicine, Division of Palliative Care, University of Rochester School of Medicine and Dentistry, Rochester, NY; Address for Correspondence: Fahad Saeed, MD, FASN, Divisions of Nephrology and Palliative Care, University of Rochester Medical Center, 601-Elmwood Ave, BOX 657, Rochester, NY 14642.University of Rochester School of Medicine and Dentistry, Rochester, NYDepartment of Medicine, Division of Palliative Care, University of Rochester School of Medicine and Dentistry, Rochester, NYDepartment of Medicine, Division of Nephrology, University of Rochester School of Medicine and Dentistry, Rochester, NY; Department of Medicine, Division of Palliative Care, University of Rochester School of Medicine and Dentistry, Rochester, NY; University of Rochester School of Medicine and Dentistry, Rochester, NY; Department of Health Behavior, Society, and Policy, Rutgers School of Public Health, Piscataway, NJ; Department of Family Medicine and Center for Center for Communication and Disparities Research, University of Rochester School of Medicine and Dentistry, Rochester, NY; Mount St. Joseph University, School of Behavioral and Natural Sciences, Cincinnati, OHDepartment of Medicine, Division of Palliative Care, University of Rochester School of Medicine and Dentistry, Rochester, NY; Department of Family Medicine and Center for Center for Communication and Disparities Research, University of Rochester School of Medicine and Dentistry, Rochester, NYDepartment of Family Medicine and Center for Center for Communication and Disparities Research, University of Rochester School of Medicine and Dentistry, Rochester, NYMount St. Joseph University, School of Behavioral and Natural Sciences, Cincinnati, OHRationale & Objective: Many older adults prefer quality of life over longevity, and some prefer conservative kidney management (CKM) over dialysis. There is a lack of patient-decision aids for adults aged 75 years or older facing kidney therapy decisions, which not only include information on dialysis and CKM but also encourage end-of-life planning. We iteratively developed a paper-based patient-decision aid for older people with low literacy and conducted surveys to assess its acceptability. Study Design: Design-based research Setting and Participants: Informed by design-based research principles and theory of behavioral activation, a multidisciplinary team of experts created a first version of the patient-decision aid containing 2 components: (1) educational material about kidney therapy options such as CKM, and (2) a question prompt list relevant to kidney therapy and end-of-life decision making. On the basis of the acceptability input of patients and caregivers, separate qualitative interviews of 35 people receiving maintenance dialysis, and with the independent feedback of educated layperson, we further modified the patient-decision aid to create a second version. Analytical Approach: We used descriptive statistics to present the results of acceptability surveys and thematic content analyses for patients’ qualitative interviews. Results: The mean age of patients (n=21) who tested the patient-decision aid was 80 years and the mean age of caregivers (n=9) was 70 years. All respondents held positive views about the educational component and would recommend the educational component to others (100% patients and caregivers). Most of the patients reported that the question prompt list helped them put concerns into words (80% patients and 88% caregivers) and would recommend the question prompt list to others (95% patients and 100% caregivers). Limitations: Single-center study Conclusions: Both components of the patient-decision aid received high acceptability ratings. We plan to launch a larger effectiveness study to test the outcomes of a decision-supporting intervention combining the patient-decision aid with palliative care-based decision coaching.http://www.sciencedirect.com/science/article/pii/S2590059523000870Patient educationdialysis decision aidquestion prompt listend-of-life care |
| spellingShingle | Fahad Saeed Spencer Dahl Robert K. Horowitz Paul R. Duberstein Ronald M. Epstein Kevin A. Fiscella Rebecca J. Allen Development and Acceptability of a Kidney Therapy Decision Aid for Patients Aged 75 Years and Older: A Design-Based Research Involving Patients, Caregivers, and a Multidisciplinary TeamPlain Language Summary Kidney Medicine Patient education dialysis decision aid question prompt list end-of-life care |
| title | Development and Acceptability of a Kidney Therapy Decision Aid for Patients Aged 75 Years and Older: A Design-Based Research Involving Patients, Caregivers, and a Multidisciplinary TeamPlain Language Summary |
| title_full | Development and Acceptability of a Kidney Therapy Decision Aid for Patients Aged 75 Years and Older: A Design-Based Research Involving Patients, Caregivers, and a Multidisciplinary TeamPlain Language Summary |
| title_fullStr | Development and Acceptability of a Kidney Therapy Decision Aid for Patients Aged 75 Years and Older: A Design-Based Research Involving Patients, Caregivers, and a Multidisciplinary TeamPlain Language Summary |
| title_full_unstemmed | Development and Acceptability of a Kidney Therapy Decision Aid for Patients Aged 75 Years and Older: A Design-Based Research Involving Patients, Caregivers, and a Multidisciplinary TeamPlain Language Summary |
| title_short | Development and Acceptability of a Kidney Therapy Decision Aid for Patients Aged 75 Years and Older: A Design-Based Research Involving Patients, Caregivers, and a Multidisciplinary TeamPlain Language Summary |
| title_sort | development and acceptability of a kidney therapy decision aid for patients aged 75 years and older a design based research involving patients caregivers and a multidisciplinary teamplain language summary |
| topic | Patient education dialysis decision aid question prompt list end-of-life care |
| url | http://www.sciencedirect.com/science/article/pii/S2590059523000870 |
| work_keys_str_mv | AT fahadsaeed developmentandacceptabilityofakidneytherapydecisionaidforpatientsaged75yearsandolderadesignbasedresearchinvolvingpatientscaregiversandamultidisciplinaryteamplainlanguagesummary AT spencerdahl developmentandacceptabilityofakidneytherapydecisionaidforpatientsaged75yearsandolderadesignbasedresearchinvolvingpatientscaregiversandamultidisciplinaryteamplainlanguagesummary AT robertkhorowitz developmentandacceptabilityofakidneytherapydecisionaidforpatientsaged75yearsandolderadesignbasedresearchinvolvingpatientscaregiversandamultidisciplinaryteamplainlanguagesummary AT paulrduberstein developmentandacceptabilityofakidneytherapydecisionaidforpatientsaged75yearsandolderadesignbasedresearchinvolvingpatientscaregiversandamultidisciplinaryteamplainlanguagesummary AT ronaldmepstein developmentandacceptabilityofakidneytherapydecisionaidforpatientsaged75yearsandolderadesignbasedresearchinvolvingpatientscaregiversandamultidisciplinaryteamplainlanguagesummary AT kevinafiscella developmentandacceptabilityofakidneytherapydecisionaidforpatientsaged75yearsandolderadesignbasedresearchinvolvingpatientscaregiversandamultidisciplinaryteamplainlanguagesummary AT rebeccajallen developmentandacceptabilityofakidneytherapydecisionaidforpatientsaged75yearsandolderadesignbasedresearchinvolvingpatientscaregiversandamultidisciplinaryteamplainlanguagesummary |