Humanistic burden of problem joints for children and adults with haemophilia

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 Multi...

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Veröffentlicht in:Haemophilia : the official journal of the World Federation of Hemophilia 2023-03, Vol.29 (2), p.608-618
Hauptverfasser: Burke, Tom, Rodriguez‐Santana, Idaira, Chowdary, Pratima, Curtis, Randall, Khair, Kate, Laffan, Michael, Mclaughlin, Paul, Noone, Declan, O'Mahony, Brian, Pasi, John, Skinner, Mark, O'Hara, Jamie
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Sprache:eng
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Zusammenfassung: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 
ISSN:1351-8216
1365-2516
DOI:10.1111/hae.14731