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February 1, 2022

Incorporating the patient voice and patient engagement in GOAL-Hēm: Advancing patient-centric hemophilia care

Goal Attainment Scaling enables a patient-centric approach to research and care in hemophilia

Jonathan C. Roberts, MD, Michael Recht MD, Ph.D., Sarah E. Gonzales, BS, Justin Stanley, BS, Michael Denne, PharmD, Jorge Caicedo, MD, Kenneth Rockwood, MD

Ardea Outcomes collaborated with Takeda to develop a Goal Attainment Scaling clinical outcome assessment, GOAL-Hēm, for research and care planning in hemophilia. Once the first version was established and piloted, further work was done to evaluate the language and content of the GOAL-Hēm goal inventory ensuring its value and relevance for people living with hemophilia and/or their caregivers. Through interviews, focus groups, and surveys with hemophilia patients and caregivers, the GOAL-Hēm goal inventory was revised with more patient-centric language that participants felt could measure clinically meaningful change. Incorporating patient and caregiver input to the GOAL-Hēm goal inventory changes the nature of the dialogue between clinician and patients/caregivers and supports shared decision making in care planning.

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