Using routine Haemophilia Joint Health Score for international comparisons of haemophilia outcome: standardization is needed

Nijdam, Annelies; Bladen, Melanie; Hubert, N.; Pettersson, Maria; Bartels, Bart; Net, Janjaap van der; Liesner, Ri; Petrini, Pia; Kurnik, Karin; Fischer, Kathelijn

doi:10.1111/hae.12755

Cited by 36 publications

(54 citation statements)

References 22 publications

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“…A recent study demonstrated agreement between the HJHS and MRI scores, indicating that the HJHS may be used safely as a first-line tool to evaluate structure [32], and a study in China has proven the reliability, internal consistency and global transferability of HJHS version 2.1, even for administration by physiotherapists and physicians with limited haemophilic experience [22]. However, other studies have noted that discrepancies between physiotherapists in routine HJHS can hamper comparison of scores between treatment regimens [33]. These discrepancies may reflect a difference in study conditions and/or experience of the healthcare professionals.…”

Section: Discussionmentioning

confidence: 99%

“…In the small Chinese study/training exercise, conditions were carefully monitored with experienced physiotherapists and physicians, ensuring protocol adherence and completion of relevant score sheets of eight children [22]. In contrast, Nijdam et al [33] reports on an international retrospective observational study comparing routine HJHS of 127 children between 1995 and 2005. In this study, interphysiotherapist discrepancies were considered to reflect differences in training and expertise, and not the reliability of the HJHS, hence experienced physiotherapists are necessary for the reliable implementation of the HJHS.…”

Section: Discussionmentioning

confidence: 99%

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Evaluation of early musculoskeletal disease in patients with haemophilia

Seuser¹,

Khayat

Négrier³

et al. 2018

Blood Coagulation &Amp; Fibrinolysis

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Early joint damage in patients with haemarthrosis often escapes diagnosis because of insufficient investigation of biomechanical changes. Arthropathy in haemophilia requires complex assessment with several tools. Considering the increased emphasis on an integrated approach to musculoskeletal (MSK) outcomes, re-evaluation of MSK assessment to address individual patient needs is warranted. To advise on the optimal use of current assessment tools and strategies for tailored MSK evaluation in patients with haemophilia. A panel of experts in haemophilic arthropathy evaluated internationally recognized assessment tools through published literature and personal expertise. Each tool was considered, scored and ranked for their utility in the clinical assessment of MSK damage. Subsequently, a patient evaluation table detailing advice on type and frequency of assessments for different patient populations was constructed. To obtain a complete MSK assessment, multiple tools must be used to ensure each criterion is evaluated. For patients with haemophilia, clinical examination of the joint, disease-specific structure/function scores, and activity/participation scores including quality of life are important, and should be performed on a regular basis according to age and clinical condition. Joint imaging is recommended in the prevention, diagnosis and follow-up of haemophilic arthropathy and should be used in conjunction with joint structure and function scores. An integrated approach to MSK assessment using combinations of tools will allow earlier management of dysfunction and may improve long-term outcomes. This approach could be used in long-term follow-up of all patients independent of age and disease stage, especially in children to prevent arthropathy.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Evaluation of early musculoskeletal disease in patients with haemophilia

Seuser¹,

Khayat

Négrier³

et al. 2018

Blood Coagulation &Amp; Fibrinolysis

View full text Add to dashboard Cite

show abstract

“…Nurses administered PRO questionnaires and collected medical and demographic data from medical records. Physiotherapists performed the HJHS Version 2.1 and provided raw score data; they had received a one‐day training session on how to complete the HJHS before the study started in order to improve standardization …”

Section: Study Design and Methodsmentioning

confidence: 99%

Study of physical function in adolescents with haemophilia: The SO‐FIT study

Khair

Holland²,

Bladen

et al. 2017

Haemophilia

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“…Additionally, certain items of the HJHS (e.g. crepitus, pain, reduced range of motion, loss of strength) may be confounding, not straightforward to assess, or might not necessarily point at arthropathy, possibly creating false positives of intra‐articular disease . We believe the HJHS threshold to identify subtle disease activity and early damage has yet to be defined, particularly in children, and there is a potential role for ultrasound in this regard.…”

mentioning

confidence: 99%