Alexander Schmidt, Fabian Tomschi, Pia Möllers, Marius Brühl, Sylvia von Mackensen, Andreas C. Strauss, Heinrich Richter, Johannes Oldenburg, Thomas Hilberg
{"title":"血友病患者的主观体能表现及其决定因素。","authors":"Alexander Schmidt, Fabian Tomschi, Pia Möllers, Marius Brühl, Sylvia von Mackensen, Andreas C. Strauss, Heinrich Richter, Johannes Oldenburg, Thomas Hilberg","doi":"10.1111/hae.70037","DOIUrl":null,"url":null,"abstract":"<div>\n \n \n <section>\n \n <h3> Introduction</h3>\n \n <p>Physical functioning is compromised in patients with haemophilia (PwH). However, factors negatively influencing subjective physical performance (SPP) remain underexplored. Hence, this study aimed to compare the SPP of PwH with healthy controls (CON), to differentiate them based on disease-specific, person-related, and arthropathy-related parameters, and to identify overarching determinants influencing SPP.</p>\n </section>\n \n <section>\n \n <h3> Methods</h3>\n \n <p>SPP was assessed in 301 PwH and 263 CON via the HEP-Test-Q, which divides SPP into a total score and four distinct dimensions (e.g., mobility). Additionally, disease-specific (i.e., type, severity, treatment regime, HIV, hepatitis), person-related (i.e., age, BMI), and arthropathy-related parameters (i.e., current pain intensity (NRS-now) and average pain intensity across 4 weeks (NRS-4w) and the HJHS) were examined, and associations with SPP were calculated.</p>\n </section>\n \n <section>\n \n <h3> Results</h3>\n \n <p>All PwH and PwH subgroups demonstrated significantly greater impairment across all SPP dimensions compared to CON. Apart from the type of haemophilia (A vs. B, <i>p</i> = 0.894), significant differences in total SPP were observed among PwH subgroups for severity (severe vs. non-severe, <i>p</i> = 0.012), treatment (prophylaxis vs. on demand, <i>p</i> = 0.002), HIV (no vs. yes), and hepatitis (no vs. yes, both <i>p</i> < 0.001). A multiple linear regression model further revealed significant predictive effects for HJHS (<i>p</i> < 0.001) and NRS-4w (<i>p</i> < 0.001) on the total SPP score.</p>\n </section>\n \n <section>\n \n <h3> Conclusion</h3>\n \n <p>PwH perceived their physical performance as significantly worse across all dimensions compared to CON. The decreased SPP in PwH can be attributed primarily to arthropathy-related factors, that is, an impaired joint status and persistent pain. To oppose the decline in SPP, tailored sports-therapeutic programs should be integrated into the multimodal treatment concept.</p>\n </section>\n </div>","PeriodicalId":12819,"journal":{"name":"Haemophilia","volume":"31 3","pages":"535-543"},"PeriodicalIF":3.0000,"publicationDate":"2025-03-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hae.70037","citationCount":"0","resultStr":"{\"title\":\"Subjective Physical Performance and Its Determinants in Patients With Haemophilia\",\"authors\":\"Alexander Schmidt, Fabian Tomschi, Pia Möllers, Marius Brühl, Sylvia von Mackensen, Andreas C. Strauss, Heinrich Richter, Johannes Oldenburg, Thomas Hilberg\",\"doi\":\"10.1111/hae.70037\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<div>\\n \\n \\n <section>\\n \\n <h3> Introduction</h3>\\n \\n <p>Physical functioning is compromised in patients with haemophilia (PwH). However, factors negatively influencing subjective physical performance (SPP) remain underexplored. Hence, this study aimed to compare the SPP of PwH with healthy controls (CON), to differentiate them based on disease-specific, person-related, and arthropathy-related parameters, and to identify overarching determinants influencing SPP.</p>\\n </section>\\n \\n <section>\\n \\n <h3> Methods</h3>\\n \\n <p>SPP was assessed in 301 PwH and 263 CON via the HEP-Test-Q, which divides SPP into a total score and four distinct dimensions (e.g., mobility). 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Subjective Physical Performance and Its Determinants in Patients With Haemophilia
Introduction
Physical functioning is compromised in patients with haemophilia (PwH). However, factors negatively influencing subjective physical performance (SPP) remain underexplored. Hence, this study aimed to compare the SPP of PwH with healthy controls (CON), to differentiate them based on disease-specific, person-related, and arthropathy-related parameters, and to identify overarching determinants influencing SPP.
Methods
SPP was assessed in 301 PwH and 263 CON via the HEP-Test-Q, which divides SPP into a total score and four distinct dimensions (e.g., mobility). Additionally, disease-specific (i.e., type, severity, treatment regime, HIV, hepatitis), person-related (i.e., age, BMI), and arthropathy-related parameters (i.e., current pain intensity (NRS-now) and average pain intensity across 4 weeks (NRS-4w) and the HJHS) were examined, and associations with SPP were calculated.
Results
All PwH and PwH subgroups demonstrated significantly greater impairment across all SPP dimensions compared to CON. Apart from the type of haemophilia (A vs. B, p = 0.894), significant differences in total SPP were observed among PwH subgroups for severity (severe vs. non-severe, p = 0.012), treatment (prophylaxis vs. on demand, p = 0.002), HIV (no vs. yes), and hepatitis (no vs. yes, both p < 0.001). A multiple linear regression model further revealed significant predictive effects for HJHS (p < 0.001) and NRS-4w (p < 0.001) on the total SPP score.
Conclusion
PwH perceived their physical performance as significantly worse across all dimensions compared to CON. The decreased SPP in PwH can be attributed primarily to arthropathy-related factors, that is, an impaired joint status and persistent pain. To oppose the decline in SPP, tailored sports-therapeutic programs should be integrated into the multimodal treatment concept.
期刊介绍:
Haemophilia is an international journal dedicated to the exchange of information regarding the comprehensive care of haemophilia. The Journal contains review articles, original scientific papers and case reports related to haemophilia care, with frequent supplements. Subjects covered include:
clotting factor deficiencies, both inherited and acquired: haemophilia A, B, von Willebrand''s disease, deficiencies of factor V, VII, X and XI
replacement therapy for clotting factor deficiencies
component therapy in the developing world
transfusion transmitted disease
haemophilia care and paediatrics, orthopaedics, gynaecology and obstetrics
nursing
laboratory diagnosis
carrier detection
psycho-social concerns
economic issues
audit
inherited platelet disorders.