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Humanistic burden of problem joints for children and adults with haemophilia
Burke, Tom Rodriguez-Santana, Idaira Chowdary, Pratima Curtis, Randall Khair, Kate Laffan, Michael McLaughlin, Paul Noone, Declan O'Mahony, Brian Pasi, John
Burke, Tom
Rodriguez-Santana, Idaira
Chowdary, Pratima
Curtis, Randall
Khair, Kate
Laffan, Michael
McLaughlin, Paul
Noone, Declan
O'Mahony, Brian
Pasi, John
Advisors
Editors
Other Contributors
EPub Date
Publication Date
2022-12-27
Submitted Date
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Article - VoR
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Abstract
Introduction: The “problem joint” (PJ) concept was developed to address patient‐centric needs for a more holistic assessment of joint morbidity for people with haemophilia (PwH). Aim: To quantify the humanistic burden of PJs in PwH to further support validation of the PJ outcome measure. Methods: Multivariable regression models evaluated the relationship between PJs and health‐related quality of life (HRQoL, EQ‐5D‐5L) and overall work productivity loss (WPL) using data from the ‘Cost of HaEmophilia: a Socioeconomic Survey’ population studies (adults: CHESS II, CHESS US+; children/adolescents: CHESS‐Paeds). Covariates included were haemophilia severity, age, comorbidities and education. Results: The CHESS II sample included 292 and 134 PwH for HRQoL and WPL analyses, mean age 38.6 years (39% ≥1 PJ, 61% none). CHESS US+ included 345 and 239 PwH for HRQoL and WPL, mean age 35 years (43% ≥1 PJ, 57% none). CHESS‐Paeds included 198 PwH aged 4–17 (HRQoL only), mean age 11.5 years (19% ≥1 PJ, 81% none). In CHESS II and CHESS US+, presence of PJs was associated with worse HRQoL (Both p < .001). Few CHESS‐Paeds participants had PJs, with no significant correlation with HRQoL. In CHESS II, upper body PJs were significantly correlated to WPL (p < .05). In CHESS US+, having ≥1 PJ or upper and lower body PJs were significantly correlated to WPL (vs. none; both p < .05). Conclusion: This study has shown a meaningful burden of PJs on PwH, which should be considered in clinical and health policy assessments of joint health.
Citation
Burke, T., Rodriguez‐Santana, I., Chowdary, P., Curtis, R., Khair, K., Laffan, M., McLaughlin, P., Noone, D., O'Mahony, B., Pasi, J., Skinner, M., & O'Hara, J. (2022). Humanistic burden of problem joints for children and adults with haemophilia. Haemophilia, 29(2), 608-618. https://doi.org/10.1111/hae.14731
Publisher
Wiley
Journal
Haemophilia
Research Unit
DOI
10.1111/hae.14731
PubMed ID
PubMed Central ID
Type
Article
Language
Description
Series/Report no.
ISSN
1351-8216