Incorporating the patient voice and patient engagement in GOAL-Hem: 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 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 partic

SUBMITTER: Roberts JC 

PROVIDER: S-EPMC8822263 | biostudies-literature | 2022 Jan

REPOSITORIES: biostudies-literature