Incorporating the patient voice and patient engagement in GOAL‐Hēm: Advancing patient‐centric hemophilia care
Abstract Background Goal Attainment Scaling for Hemophilia (GOAL‐Hēm) is a novel, hemophilia‐specific, validated patient engagement tool and patient‐reported outcome instrument. Objective We evaluated the degree to which the language of GOAL‐Hēm was patient‐centric and the content valuable and relev...
| Main Authors: | , , , , , , |
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| Format: | Article |
| Language: | English |
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Elsevier
2022-01-01
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| Series: | Research and Practice in Thrombosis and Haemostasis |
| Subjects: | |
| Online Access: | https://doi.org/10.1002/rth2.12655 |
| _version_ | 1797756815728967680 |
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| author | Jonathan C. Roberts Michael Recht Sarah E. Gonzales Justin Stanley Michael Denne Jorge Caicedo Kenneth Rockwood |
| author_facet | Jonathan C. Roberts Michael Recht Sarah E. Gonzales Justin Stanley Michael Denne Jorge Caicedo Kenneth Rockwood |
| author_sort | Jonathan C. Roberts |
| collection | DOAJ |
| description | Abstract Background Goal Attainment Scaling for Hemophilia (GOAL‐Hēm) is a novel, hemophilia‐specific, validated patient engagement tool and patient‐reported outcome instrument. Objective We evaluated the degree to which the language of GOAL‐Hēm was patient‐centric and the content valuable and relevant for people with hemophilia (PWH) and/or their caregivers. Patients/Methods Patients and caregivers participated in one of three investigations: an online survey, one‐on‐one patient interviews, or a focus group. The survey and interviews assessed the clarity and relevance of the GOAL‐Hēm menu items. Interviews were semistructured, audio recorded, and transcribed verbatim. Feedback from interviews was coded as “clear,” “unclear,” “remove,” or “add.” The focus group explored participants’ experience of GOAL‐Hēm and elicited recommendations for implementation. Quotations from focus group and interview transcripts were indexed and charted to emergent themes for analysis. Results Participants comprised 19 adults with hemophilia and 19 caregivers of children with hemophilia (survey, n = 20; interview, n = 12; focus group, n = 6). After their feedback, 32% (15/48) of goals were retained unchanged. Further feedback resulted in the removal of 45% (286/635) of the goal descriptors, and 30% (193/635) of the retained descriptors were modified. Three new (total = 38) goals and 42 descriptors (total = 368) were added to the menu. Thematic analysis indicated that participants were enthusiastic about patient‐centric language, empowered through the goal‐setting process, and recognized GOAL‐Hēm could measure clinically meaningful change. Conclusion By listening closely to patients and caregivers, we refined GOAL‐Hēm to better capture the experiences of PWH, enhance content validity, and augment implementation strategies. Incorporating the patient voice is integral to developing patient‐centered outcome measures. |
| first_indexed | 2024-03-12T18:07:04Z |
| format | Article |
| id | doaj.art-1355172bd8954371a259bc32359dd7a6 |
| institution | Directory Open Access Journal |
| issn | 2475-0379 |
| language | English |
| last_indexed | 2024-03-12T18:07:04Z |
| publishDate | 2022-01-01 |
| publisher | Elsevier |
| record_format | Article |
| series | Research and Practice in Thrombosis and Haemostasis |
| spelling | doaj.art-1355172bd8954371a259bc32359dd7a62023-08-02T09:27:56ZengElsevierResearch and Practice in Thrombosis and Haemostasis2475-03792022-01-0161n/an/a10.1002/rth2.12655Incorporating the patient voice and patient engagement in GOAL‐Hēm: Advancing patient‐centric hemophilia careJonathan C. Roberts0Michael Recht1Sarah E. Gonzales2Justin Stanley3Michael Denne4Jorge Caicedo5Kenneth Rockwood6Bleeding & Clotting Disorders Institute Peoria Illinois USAThe Hemophilia Center at Oregon Health & Science University Portland Oregon USABleeding & Clotting Disorders Institute Peoria Illinois USAArdea Outcomes Halifax Nova Scotia CanadaTakeda, Lexington Massachusetts USATakeda, Lexington Massachusetts USAArdea Outcomes Halifax Nova Scotia CanadaAbstract Background Goal Attainment Scaling for Hemophilia (GOAL‐Hēm) is a novel, hemophilia‐specific, validated patient engagement tool and patient‐reported outcome instrument. Objective We evaluated the degree to which the language of GOAL‐Hēm was patient‐centric and the content valuable and relevant for people with hemophilia (PWH) and/or their caregivers. Patients/Methods Patients and caregivers participated in one of three investigations: an online survey, one‐on‐one patient interviews, or a focus group. The survey and interviews assessed the clarity and relevance of the GOAL‐Hēm menu items. Interviews were semistructured, audio recorded, and transcribed verbatim. Feedback from interviews was coded as “clear,” “unclear,” “remove,” or “add.” The focus group explored participants’ experience of GOAL‐Hēm and elicited recommendations for implementation. Quotations from focus group and interview transcripts were indexed and charted to emergent themes for analysis. Results Participants comprised 19 adults with hemophilia and 19 caregivers of children with hemophilia (survey, n = 20; interview, n = 12; focus group, n = 6). After their feedback, 32% (15/48) of goals were retained unchanged. Further feedback resulted in the removal of 45% (286/635) of the goal descriptors, and 30% (193/635) of the retained descriptors were modified. Three new (total = 38) goals and 42 descriptors (total = 368) were added to the menu. Thematic analysis indicated that participants were enthusiastic about patient‐centric language, empowered through the goal‐setting process, and recognized GOAL‐Hēm could measure clinically meaningful change. Conclusion By listening closely to patients and caregivers, we refined GOAL‐Hēm to better capture the experiences of PWH, enhance content validity, and augment implementation strategies. Incorporating the patient voice is integral to developing patient‐centered outcome measures.https://doi.org/10.1002/rth2.12655Caregiverfocus groupgoalhemophiliapatient engagementpatient reported outcome measure |
| spellingShingle | Jonathan C. Roberts Michael Recht Sarah E. Gonzales Justin Stanley Michael Denne Jorge Caicedo Kenneth Rockwood Incorporating the patient voice and patient engagement in GOAL‐Hēm: Advancing patient‐centric hemophilia care Research and Practice in Thrombosis and Haemostasis Caregiver focus group goal hemophilia patient engagement patient reported outcome measure |
| title | Incorporating the patient voice and patient engagement in GOAL‐Hēm: Advancing patient‐centric hemophilia care |
| title_full | Incorporating the patient voice and patient engagement in GOAL‐Hēm: Advancing patient‐centric hemophilia care |
| title_fullStr | Incorporating the patient voice and patient engagement in GOAL‐Hēm: Advancing patient‐centric hemophilia care |
| title_full_unstemmed | Incorporating the patient voice and patient engagement in GOAL‐Hēm: Advancing patient‐centric hemophilia care |
| title_short | Incorporating the patient voice and patient engagement in GOAL‐Hēm: Advancing patient‐centric hemophilia care |
| title_sort | incorporating the patient voice and patient engagement in goal hem advancing patient centric hemophilia care |
| topic | Caregiver focus group goal hemophilia patient engagement patient reported outcome measure |
| url | https://doi.org/10.1002/rth2.12655 |
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