Testing the What Matters to Me workbook in a diverse sample of seriously ill patients and caregivers
Objectives: We evaluated the What Matters to Me Workbook, a patient-facing version of the Serious Illness Conversation Guide co-created by Ariadne Labs and The Conversation Project. Methods: We purposively recruited diverse seriously ill patients and caregivers in the US. Participants completed the...
| Main Authors: | , , , , , , , , |
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| Format: | Article |
| Language: | English |
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Elsevier
2023-12-01
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| Series: | PEC Innovation |
| Subjects: | |
| Online Access: | http://www.sciencedirect.com/science/article/pii/S2772628223000961 |
| _version_ | 1797383591596916736 |
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| author | Erik K. Fromme Lauren Nisotel Kimberly Mendoza Ayush Thacker Kurt Lowery Bukiwe Sihlongonyane Katherine O. DeBartolo Jane Roessner Judy N. Margo |
| author_facet | Erik K. Fromme Lauren Nisotel Kimberly Mendoza Ayush Thacker Kurt Lowery Bukiwe Sihlongonyane Katherine O. DeBartolo Jane Roessner Judy N. Margo |
| author_sort | Erik K. Fromme |
| collection | DOAJ |
| description | Objectives: We evaluated the What Matters to Me Workbook, a patient-facing version of the Serious Illness Conversation Guide co-created by Ariadne Labs and The Conversation Project. Methods: We purposively recruited diverse seriously ill patients and caregivers in the US. Participants completed the Workbook, a survey, and a semi-structured in-depth interview about their experience. Qualitative analysis of interviews and notes was employed to extract themes. Simple descriptive statistics were employed to analyze eight investigator authored questions. Results: Twenty-nine study participants completed twenty-one interviews and twenty-five surveys. Ratings for safety (3.87/4, SD = 0.43) and acceptability (3.59/4, SD = 0.956) were higher than ratings for ease of use (3.30/4, SD = 0.97) and usefulness (3.24/4, SD = 0.80). Qualitative analysis identified that while the workbook was safe, acceptable, easy to use, and useful, it is more important who is recommending it and how they are explaining it. Conclusion: If presented in the right way by a trustworthy person, the What Matters to Me Workbook can be an easy to use, useful, and safe resource for patients with serious illness and their caregivers. Innovation: The Workbook focuses on serious illness rather than end-of-life and meshes with a clinician-facing conversation guide and a health-system level intervention. |
| first_indexed | 2024-03-08T21:23:16Z |
| format | Article |
| id | doaj.art-712eaf5c701a4928920fbd1d49aeaa6e |
| institution | Directory Open Access Journal |
| issn | 2772-6282 |
| language | English |
| last_indexed | 2024-03-08T21:23:16Z |
| publishDate | 2023-12-01 |
| publisher | Elsevier |
| record_format | Article |
| series | PEC Innovation |
| spelling | doaj.art-712eaf5c701a4928920fbd1d49aeaa6e2023-12-21T07:38:53ZengElsevierPEC Innovation2772-62822023-12-013100216Testing the What Matters to Me workbook in a diverse sample of seriously ill patients and caregiversErik K. Fromme0Lauren Nisotel1Kimberly Mendoza2Ayush Thacker3Kurt Lowery4Bukiwe Sihlongonyane5Katherine O. DeBartolo6Jane Roessner7Judy N. Margo8Serious Illness Care Program, Ariadne Labs, Boston, MA, USA; Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, MA, USA; Corresponding author at: 401 Park Drive, 3rd Floor, Boston, MA 02215.American Cancer Society, Atlanta, GA, USAHarvard T.H Chan School of Public Health, Boston, MA, USABrandeis University, Waltham, MASerious Illness Care Program, Ariadne Labs, Boston, MA, USABoston University School of Public Health, Boston, MA, USAThe Conversation Project, Institute for Healthcare Improvement, Boston, MA, USAThe Conversation Project, Institute for Healthcare Improvement, Boston, MA, USAScience & Technology Platform, Ariadne Labs, Boston, MA, USAObjectives: We evaluated the What Matters to Me Workbook, a patient-facing version of the Serious Illness Conversation Guide co-created by Ariadne Labs and The Conversation Project. Methods: We purposively recruited diverse seriously ill patients and caregivers in the US. Participants completed the Workbook, a survey, and a semi-structured in-depth interview about their experience. Qualitative analysis of interviews and notes was employed to extract themes. Simple descriptive statistics were employed to analyze eight investigator authored questions. Results: Twenty-nine study participants completed twenty-one interviews and twenty-five surveys. Ratings for safety (3.87/4, SD = 0.43) and acceptability (3.59/4, SD = 0.956) were higher than ratings for ease of use (3.30/4, SD = 0.97) and usefulness (3.24/4, SD = 0.80). Qualitative analysis identified that while the workbook was safe, acceptable, easy to use, and useful, it is more important who is recommending it and how they are explaining it. Conclusion: If presented in the right way by a trustworthy person, the What Matters to Me Workbook can be an easy to use, useful, and safe resource for patients with serious illness and their caregivers. Innovation: The Workbook focuses on serious illness rather than end-of-life and meshes with a clinician-facing conversation guide and a health-system level intervention.http://www.sciencedirect.com/science/article/pii/S2772628223000961Serious illnessCommunicationAdvance care planningPatient educationCaregiversGoal concordant care |
| spellingShingle | Erik K. Fromme Lauren Nisotel Kimberly Mendoza Ayush Thacker Kurt Lowery Bukiwe Sihlongonyane Katherine O. DeBartolo Jane Roessner Judy N. Margo Testing the What Matters to Me workbook in a diverse sample of seriously ill patients and caregivers PEC Innovation Serious illness Communication Advance care planning Patient education Caregivers Goal concordant care |
| title | Testing the What Matters to Me workbook in a diverse sample of seriously ill patients and caregivers |
| title_full | Testing the What Matters to Me workbook in a diverse sample of seriously ill patients and caregivers |
| title_fullStr | Testing the What Matters to Me workbook in a diverse sample of seriously ill patients and caregivers |
| title_full_unstemmed | Testing the What Matters to Me workbook in a diverse sample of seriously ill patients and caregivers |
| title_short | Testing the What Matters to Me workbook in a diverse sample of seriously ill patients and caregivers |
| title_sort | testing the what matters to me workbook in a diverse sample of seriously ill patients and caregivers |
| topic | Serious illness Communication Advance care planning Patient education Caregivers Goal concordant care |
| url | http://www.sciencedirect.com/science/article/pii/S2772628223000961 |
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