Development and validation of the Child Hemophilia Treatment Experience Measure: A new observer-reported outcome measure.

ABSTRACT:

Introduction

The Child Hemophilia Treatment Experience Measure (Child Hemo-TEM) was developed to capture the treatment burden experience of children with haemophilia (CwH).

Aim

Describe the development of this novel haemophilia-specific measure.

Methods

Interviews were conducted with clinical experts, CwH and CwH's caregivers. Interviews were analysed according to adapted grounded theory principles. Based on the analysis, a preliminary measure was developed and debriefed. Psychometric analyses were performed according to an a priori analysis plan using data collected in a cross-sectional web survey and a final measure was generated.

Results

Interviews with four clinical experts, 25 CwH ages 8 to <12 years, and 25 caregivers of CwH <12 years were conducted. Conc

SUBMITTER: Brod M 

PROVIDER: S-EPMC11780184 | biostudies-literature | 2025 Jan

REPOSITORIES: biostudies-literature