Health-related quality of life questionnaires in individuals with haemophilia: a systematic review of their measurement properties

Authors:

Limperg, P. F., Terwee, C. B., Young, N. L., Price, V. E., Gouw, S. C., Peters, M., Grootenhuis, M. A., Blanchette, V., and Haverman, L.

Abstract:

BACKGROUND: The evaluation of health related quality of life (HRQOL) is essential for a full assessment of the influence of an illness on patients' lives. The aim of this paper is to critically appraise and compare the measurement properties of HRQOL questionnaires studied in haemophilia.

METHODS: Bibliographic databases (Embase, Medline, Cinahl and PsycInfo) were searched for articles evaluating measurement properties of HRQOL questionnaires in haemophilia. Articles were excluded that did not report HRQOL measurement properties, or when <50% of the study population had haemophilia. The methodological quality of the selected studies was evaluated using the COSMIN checklist. The measurement properties of the HRQL questionnaires were rated as 'positive', 'indeterminate' or 'negative', accompanied by levels of evidence.

RESULTS: The search resulted in 1597 unique hits, of which 22 studies were included. These articles evaluated three questionnaires for children (CHO-KLAT, Haemo-QoL and one unnamed measure) and five for adults (Hemofilia-QoL, Haemophilia Well-Being Index, HAEMO-QoL-A, Haem-A-QoL, and SF-36). The CHO-KLAT was the paediatric measure that showed the strongest measurement properties in high-quality studies. The Haemophilia Well-Being Index and HAEMO-QoL-A performed best among the adult measures. None of the studies reported measurement error and responsiveness.

CONCLUSION: Our findings suggest that there is no need for new disease-specific HRQOL questionnaires for haemophilia, but rather that additional research is necessary to document the measurement properties of the currently available questionnaires, specifically focusing on the structural validity, measurement error and responsiveness of these questionnaires.

DOI:

10.1111/hae.13197

URL:

https://onlinelibrary.wiley.com/doi/pdf/10.1111/hae.13197

Journal:

Haemophilia

issn:

1351-8216

Publication year:

2017

pages:

497-510

Symptom status:

Cognitive/mental state
Emotional state
Physical state

Functional status:

Physical functioning
Role functioning
Social functioning

General health perceptions / HRQoL:

Health-related quality of life

Overall quality of life:

Overall quality of life

Age:

Adults (18-65)
Children (0-18)
Seniors (65+)

Disease:

Diseases of and symptoms related to the blood and blood-forming organs and certain disorders involving the immune mechanism

PRO / non-PRO:

Patient Reported Outcome

Type of measurement instrument:

1 - Questionnaires

Instrument:

CHO-KLAT - Canadian Haemophilia Outcomes–Kids Life Assessment Tool
Haem-A-QoL
Haemophilia Well-Being Index
HAEMO-QOL - Hemophilia Quality of Life Questionnaire (versions: HAEMO-QOL-A; HAEMO-QoL-SF)
SF-36 - 36-item Short Form Health Survey [alias: RAND-36][alias: MOS SF-36]] (versions: VSF-36 LoA - Visual Version of the SF-36 Limitations of Physical Activities domain; VR-36 - Veterans SF-36)    |  | also see: database.cosmin.nl
Toddler questionnaire