The GOAL-Hem journey: Shared decision making and patient-centred outcomes.

ABSTRACT:

Introduction

GOAL-Hēm is a novel, haemophilia-specific, patient-centred outcome measure (PCOM) based on goal attainment scaling, allowing people with haemophilia (PwH) to set and monitor the attainment of individualized goals for treatment.

Aim

To provide a thorough overview of the creation, validation, and development of GOAL-Hēm.

Methods

Clinician workshops were held to develop a haemophilia-specific goal menu. Qualitative data from semistructured interviews with PwH and their caregivers guided further revisions to the goal menu (i.e., goal domains and descriptors). A feasibility study was performed including a 12-week, prospective, noninterventional evaluation involving clinicians and PwH at four US haemophilia treatment centres. Finally, the Patient Voice Study ga

SUBMITTER: Roberts JC 

PROVIDER: S-EPMC9546188 | biostudies-literature | 2022 Sep

REPOSITORIES: biostudies-literature