ArticleResearch and practice in thrombosis and haemostasis2022
Incorporating the patient voice and patient engagement in GOAL-Hēm: Advancing patient-centric hemophilia care.
Article in Research and practice in thrombosis and haemostasis, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers.
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Who cites it
4 citing papers in PubMed, 7 citations in OpenAlex.
- Embedding Patient-Centricity by Collaborating with Patients to Transform the Rare Disease Ecosystem.Pharmaceutical medicine · 2023Article
- Article
- The GOAL-Hēm journey: Shared decision making and patient-centred outcomes.Haemophilia : the official journal of the World Federation of Hemophilia · 2022Article
- Incorporating the patient voice and patient engagement in GOAL-Hēm: Advancing patient-centric hemophilia care.Research and practice in thrombosis and haemostasis · 2022Article
Corrections and comments
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Authors and funding
7 authors at 4 institutions in 2 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundGoal Attainment Scaling for Hemophilia (GOAL-Hēm) is a novel, hemophilia-specific, validated patient engagement tool and patient-reported outcome instrument.
objectiveWe 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/
methodsPatients 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.
resultsParticipants comprised 19 adults with hemophilia and 19 caregivers of children with hemophilia (survey,
conclusionBy 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.
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Registered trials
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