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5. Musculoskeletal ultrasound in hemophilia: Results and recommendations from a global survey and consensus meeting

Author

Bakeer, Nihal, Dover, Saunya, Babyn, Paul, Feldman, Brian M., von Drygalski, Annette, Doria, Andrea S., Ignas, Danial M., Abad, Audrey, Bailey, Cindy, Beggs, Ian, Chang, Eric Y., Dunn, Amy, Funk, Sharon, Gibikote, Sridhar, Goddard, Nicholas, Hilliard, Pamela, Keshava, Shyamkumar N., Kruse‐Jarres, Rebecca, Li, Yingjia, Lobet, Sébastien, Manco‐Johnson, Marilyn, Martinoli, Carlo, O’Donnell, James S., Papakonstantinou, Olympia, Pergantou, Helen, Poonnoose, Pradeep, Querol, Felipe, Srivastava, Alok, Steiner, Bruno, Strike, Karen, Timmer, Merel, Tyrrell, Pascal N., Vidarsson, Logi, and Blanchette, Victor S.

Published
2021
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6. A clinical practice guideline for primary care physiotherapy in patients with haemophilia.

Author

Blokzijl, Johan, Pisters, Martijn F., Aspdahl, Magnus, de Boer, Wypke, Dybvik Matlary, Ruth Elise, Douma‐van Riet, Danielle, de Kleijn, Piet, Lobet, Sébastien, Loughnane, Paula, McLaughlin, Paul, Bladen, Melanie, Roche, Sheila, Stephensen, David, van Vlimmeren, Leo, van Vulpen, Lize F. D., and Timmer, Merel A.

Subjects
HEMOPHILIACS, HEMOPHILIA treatment, PHYSICAL therapy, PHYSICAL therapists, PRIMARY care
Abstract

Introduction: As a result of centralisation of haemophilia care to a limited number of intramural settings, many persons with haemophilia have to travel long distances to attend their haemophilia specialised treatment centre. However, regular physiotherapy treatment can be provided by primary care physiotherapists in the personʼs own region. Due to the rarity of the disease most primary care physiotherapists have limited experience with this population. This study aims to provide a clinical practice guideline for primary care physiotherapists working with persons with bleeding disorders. Method: A list of the most urgent key‐questions was derived from a previous study. Literature was summarised using the grading of recommendations assessment, development, and evaluation (GRADE) evidence‐to‐decision framework. Recommendations were drafted based on four 90 min consensus meetings with expert physiotherapists. Recommendations were finalised after feedback and >80% consensus of all stakeholders (including PWH, physiotherapists, haematologists and the corresponding societies). Results: A list of 82 recommendations was formulated to support primary care physiotherapists when treating a person with a bleeding disorder. These recommendations could be divided into 13 categories: two including recommendations on organisation of care, six on therapy for adult patients with bleeding disorders and five on therapy adaptations for paediatric care. Therapy recommendations included treatment after a joint‐ or muscle bleed, haemophilic arthropathy, chronic synovitis, non‐haemophilia related conditions and orthopaedic surgery. Conclusion: An evidence‐based practice guideline, based on current evidence from literature and clinical expertise, has been developed for primary care physiotherapists treating a person with haemophilia. To improve care, the recommendations should be implemented in daily practice. [ABSTRACT FROM AUTHOR]

Published
2024
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7. The relevance of MRI findings in joints of persons with haemophilia: Insights from the last decade

Author

MS Radiologie, Researchgr. Systems Radiology, Cancer, Poli Van Creveldkliniek Medisch, Child Health, Circulatory Health, Foppen, Wouter, van Leeuwen, Flora H P, Timmer, Merel A, Fischer, Kathelijn, MS Radiologie, Researchgr. Systems Radiology, Cancer, Poli Van Creveldkliniek Medisch, Child Health, Circulatory Health, Foppen, Wouter, van Leeuwen, Flora H P, Timmer, Merel A, and Fischer, Kathelijn

Published
2024

8. Ultrasound in addition to clinical assessment of acute musculoskeletal complaints in bleeding disorders: impact on patient management

Author

MS Radiologie, Researchgr. Systems Radiology, Cancer, Circulatory Health, Infection & Immunity, Regenerative Medicine and Stem Cells, Poli Van Creveldkliniek Medisch, Child Health, van Leeuwen, Flora Hendrica Pieternella, Foppen, Wouter, de Jong, Pim A, van Dijk, Wobke E M, Blokzijl, Johan, Fischer, Kathelijn, Timmer, Merel A, MS Radiologie, Researchgr. Systems Radiology, Cancer, Circulatory Health, Infection & Immunity, Regenerative Medicine and Stem Cells, Poli Van Creveldkliniek Medisch, Child Health, van Leeuwen, Flora Hendrica Pieternella, Foppen, Wouter, de Jong, Pim A, van Dijk, Wobke E M, Blokzijl, Johan, Fischer, Kathelijn, and Timmer, Merel A

Published
2024

9. Patient-specific predictors of physical recovery after LVAD implantation

Author

Schaik, Romeo van, Timmer, Merel (Thesis Advisor), Schaik, Romeo van, and Timmer, Merel (Thesis Advisor)

Abstract

Background Improvement of physical capacity is one of the primary goals after Left Ventricular Assistant Device (LVAD) placement in heart failure patients. Although LVAD placement is effective at regaining physical capacity and quality of life in some patients, others do not benefit. Identifying factors related to a lack of physical improvement at discharge may help personalize care after implantation. Aim This study aims to determine if physical fitness and patient characteristics can predict a lack of physical improvement in LVAD patients measured with the six-minute walk test (6MWT). Methods Data of patients with an LVAD implanted at the University Medical Center Utrecht between November 2014 and January 2023 were collected. The difference in walking distance on 6MWT in the short term (three months) and long term (first year) after implantation was calculated. Patients with an improvement in walking distance of less than 45 meters in the first three months were considered to have a lack of physical improvement. Patients with a walking distance more than 45 meters were considered improvers. Odds ratios were calculated using logistic regression. Results The total cohort consisted of 214 patients (mean age 52.4). There were 49 patients with a lack of physical improvement (mean walking difference: -54,9 ±26.6), and 165 improvers (mean walking difference: 195.2 ±15.7). The physical capacity of the total cohort increased significantly in the short- term (138.0 ±33.3, p: < 0.001), and in the long-term (188.7 ±39.9, p: < 0.001). Walking distance > 300 meters at discharge is a significant predictor (OR 5.701, 95% C.I, 2.044 – 15.899) for a lack of physical improvement. Conclusion and key findings Patients walking more than 300 meters on a 6MWT at discharge are more likely to have a lack of physical improvement after LVAD implantation. Physical capacity increases after LVAD implantation, these results give more certainty to patients relying on an LVAD to be alive. To predi

Published
2024

11. A Blended Physiotherapy Intervention for Persons With Hemophilic Arthropathy: Development Study

Author

Timmer, Merel A, Kloek, Corelien J J, de Kleijn, Piet, Kuijlaars, Isolde A R, Schutgens, Roger E G, Veenhof, Cindy, and Pisters, Martijn F

Subjects
Computer applications to medicine. Medical informatics, R858-859.7, Public aspects of medicine, RA1-1270
Abstract

BackgroundJoint bleeds are the hallmark of hemophilia, leading to a painful arthritic condition called as hemophilic arthropathy (HA). Exercise programs are frequently used to improve the physical functioning in persons with HA. As hemophilia is a rare disease, there are not many physiotherapists who are experienced in the field of hemophilia, and regular physiotherapy sessions with an experienced physiotherapist in the field of hemophilia are not feasible for persons with HA. Blended care is an innovative intervention that can support persons with HA at home to perform the advised physical activities and exercises and provide self-management information. ObjectiveThe aim of this study was to develop a blended physiotherapy intervention for persons with HA. MethodsThe blended physiotherapy intervention, namely, e-Exercise HA was developed by cocreation with physiotherapists, persons with HA, software developers, and researchers. The content of e-Exercise HA was compiled using the first 3 steps of the Center for eHealth Research roadmap model (ie, contextual inquiry, value specification, and design), including people with experience in the development of previous blended physiotherapy interventions, a literature search, and focus groups. ResultsA 12-week blended intervention was developed, integrating face-to-face physiotherapy sessions with a web-based app. The intervention consists of information modules for persons with HA and information modules for physiotherapists, a graded activity program using a self-chosen activity, and personalized video-supported exercises. The information modules consist of text blocks, videos, and reflective questions. The patients can receive pop-ups as reminders and give feedback on the performance of the prescribed activities. ConclusionsIn this study, we developed a blended physiotherapy intervention for persons with HA, which consists of information modules, a graded activity program, and personalized video-supported exercises.

Published
2020
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13. Subclinical synovial proliferation in patients with severe haemophilia A: The value of ultrasound screening and biochemical markers

Author

van Bergen, Eline D. P., primary, van Leeuwen, Flora H. P., additional, Foppen, Wouter, additional, Timmer, Merel A., additional, Schutgens, Roger E. G., additional, Mastbergen, Simon C., additional, Lafeber, Floris P. J. G., additional, de Jong, Pim A., additional, Fischer, Kathelijn, additional, and van Vulpen, Lize F. D., additional

Published
2023
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14. Clotting factor activity levels and bleeding risk in people with haemophilia playing sports

Author

Versloot, Olav, primary, Kemler, Ellen, additional, Blokzijl, Johan, additional, Timmer, Merel, additional, Schuuring, Marleen, additional, van Galen, Karin P. M., additional, Kremer Hovinga, Idske Cornelia L., additional, van der Valk, Paul R., additional, van Vulpen, Lize F. D., additional, Schutgens, Roger E. G., additional, van Koppenhagen, Casper F., additional, van der Net, Janjaap, additional, and Fischer, Kathelijn, additional

Published
2023
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15. The relevance of MRI findings in joints of persons with haemophilia: Insights from the last decade.

Author

Foppen, Wouter, van Leeuwen, Flora H. P., Timmer, Merel A., and Fischer, Kathelijn

Subjects
HEMOPHILIACS, MAGNETIC resonance imaging, OSTEOCHONDRITIS, TEENAGERS
Abstract

This article discusses the relevance of magnetic resonance imaging (MRI) findings in individuals with haemophilia. It highlights that most bleeding episodes in haemophilia occur in the large synovial joints, leading to irreversible haemophilic arthropathy. The article emphasizes the importance of detecting subclinical bleeding and inflammation, as they contribute to the development of arthropathy. MRI is considered the gold standard for evaluating early blood-induced joint changes in haemophilia, and the International Prophylaxis Study Group (IPSG) has developed a comprehensive scoring scheme for MRI assessment. The article also discusses the clinical consequences of subclinical bleeding, the evaluation of joint effusions, and the assessment of osteochondral abnormalities using MRI. It concludes by stating that MRI provides a complete overview of joint status in individuals with haemophilia and that the IPSG MRI Scale version 2.0 facilitates standardized MRI scoring for future outcome studies. [Extracted from the article]

Published
2024
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17. Identifying performance-based outcome measures of physical function in people with haemophilia (IPOP)

Author

Research UMC Utrecht, Activity&Health sectie exercise, Child Health, Poli Van Creveldkliniek Medisch, Circulatory Health, Bladen, Melanie, Harbidge, Hannah, Drechsler, Wendy, Duport, Gaetan, Mahaffey, Ryan, van der Net, Janjap, Pérez-Alenda, Sofía, Sayers, Fionnuala, Strike, Karen, Timmer, Merel, Stephensen, David, Research UMC Utrecht, Activity&Health sectie exercise, Child Health, Poli Van Creveldkliniek Medisch, Circulatory Health, Bladen, Melanie, Harbidge, Hannah, Drechsler, Wendy, Duport, Gaetan, Mahaffey, Ryan, van der Net, Janjap, Pérez-Alenda, Sofía, Sayers, Fionnuala, Strike, Karen, Timmer, Merel, and Stephensen, David

Published
2023

18. Can motor proficiency testing predict sports injuries and sports-induced bleeds in people with haemophilia?

Author

Afdeling van Creveldkliniek - Zorg, Poli Van Creveldkliniek Medisch, Child Health, Circulatory Health, Kinderbewegingszorg patientenzorg, Infection & Immunity, Activity&Health sectie exercise, Versloot, Olav, Blokzijl, Johan, Timmer, Merel, Schuuring, Marleen, van Galen, Karin, Kremer Hovinga, Idske, van der Valk, Paul, van Vulpen, Lize, Schutgens, Roger, van Koppenhagen, Casper, van der Net, Janjaap, Fischer, Kathelijn, Afdeling van Creveldkliniek - Zorg, Poli Van Creveldkliniek Medisch, Child Health, Circulatory Health, Kinderbewegingszorg patientenzorg, Infection & Immunity, Activity&Health sectie exercise, Versloot, Olav, Blokzijl, Johan, Timmer, Merel, Schuuring, Marleen, van Galen, Karin, Kremer Hovinga, Idske, van der Valk, Paul, van Vulpen, Lize, Schutgens, Roger, van Koppenhagen, Casper, van der Net, Janjaap, and Fischer, Kathelijn

Published
2023

19. Clotting factor activity levels and bleeding risk in people with haemophilia playing sports

Author

Afdeling van Creveldkliniek - Zorg, Poli VCK, Poli Van Creveldkliniek Medisch, Child Health, Circulatory Health, Kinderbewegingszorg patientenzorg, Infection & Immunity, Activity&Health sectie exercise, Versloot, Olav, Kemler, Ellen, Blokzijl, Johan, Timmer, Merel, Schuuring, Marleen, van Galen, Karin P.M., Kremer Hovinga, Idske Cornelia L., van der Valk, Paul R., van Vulpen, Lize F.D., Schutgens, Roger E.G., van Koppenhagen, Casper F., van der Net, Janjaap, Fischer, Kathelijn, Afdeling van Creveldkliniek - Zorg, Poli VCK, Poli Van Creveldkliniek Medisch, Child Health, Circulatory Health, Kinderbewegingszorg patientenzorg, Infection & Immunity, Activity&Health sectie exercise, Versloot, Olav, Kemler, Ellen, Blokzijl, Johan, Timmer, Merel, Schuuring, Marleen, van Galen, Karin P.M., Kremer Hovinga, Idske Cornelia L., van der Valk, Paul R., van Vulpen, Lize F.D., Schutgens, Roger E.G., van Koppenhagen, Casper F., van der Net, Janjaap, and Fischer, Kathelijn

Published
2023

20. Subclinical synovial proliferation in patients with severe haemophilia A: The value of ultrasound screening and biochemical markers

Author

Poli Van Creveldkliniek Medisch, Researchgr. Systems Radiology, Cancer, MS Radiologie, Child Health, Circulatory Health, Infection & Immunity, MS Reumatologie/Immunologie/Infectie, Regenerative Medicine and Stem Cells, Lab Reumatologie/Klinische Immunologie, van Bergen, Eline D.P., van Leeuwen, Flora H.P., Foppen, Wouter, Timmer, Merel A., Schutgens, Roger E.G., Mastbergen, Simon C., Lafeber, Floris P.J.G., de Jong, Pim A., Fischer, Kathelijn, van Vulpen, Lize F.D., Poli Van Creveldkliniek Medisch, Researchgr. Systems Radiology, Cancer, MS Radiologie, Child Health, Circulatory Health, Infection & Immunity, MS Reumatologie/Immunologie/Infectie, Regenerative Medicine and Stem Cells, Lab Reumatologie/Klinische Immunologie, van Bergen, Eline D.P., van Leeuwen, Flora H.P., Foppen, Wouter, Timmer, Merel A., Schutgens, Roger E.G., Mastbergen, Simon C., Lafeber, Floris P.J.G., de Jong, Pim A., Fischer, Kathelijn, and van Vulpen, Lize F.D.

Published
2023

21. Screening for subclinical synovial proliferation in haemophilia: A systematic review and meta-analysis comparing physical examination and ultrasound

Author

Cancer, Researchgr. Systems Radiology, Poli Van Creveldkliniek Medisch, Child Health, Circulatory Health, Infection & Immunity, Regenerative Medicine and Stem Cells, MS Radiologie, van Leeuwen, Flora H.P., Timmer, Merel A., de Jong, Pim A., Fischer, Kathelijn, Foppen, Wouter, Cancer, Researchgr. Systems Radiology, Poli Van Creveldkliniek Medisch, Child Health, Circulatory Health, Infection & Immunity, Regenerative Medicine and Stem Cells, MS Radiologie, van Leeuwen, Flora H.P., Timmer, Merel A., de Jong, Pim A., Fischer, Kathelijn, and Foppen, Wouter

Published
2023

22. Functional decline in persons with haemophilia and factors associated with deterioration

Author

Poli Van Creveldkliniek Medisch, Fysiotherapiewetenschap, Brain, Child Health, Circulatory Health, Infection & Immunity, Blokzijl, Johan, Pisters, Martijn F, Veenhof, Cindy, Schutgens, Roger E G, Timmer, Merel A, Poli Van Creveldkliniek Medisch, Fysiotherapiewetenschap, Brain, Child Health, Circulatory Health, Infection & Immunity, Blokzijl, Johan, Pisters, Martijn F, Veenhof, Cindy, Schutgens, Roger E G, and Timmer, Merel A

Published
2023

23. Magnetic resonance imaging evidence for subclinical joint bleeding in a Dutch population of people with severe hemophilia on prophylaxis

Author

Cancer, Researchgr. Systems Radiology, Poli Van Creveldkliniek Medisch, Child Health, Circulatory Health, Infection & Immunity, Regenerative Medicine and Stem Cells, MS Radiologie, van Leeuwen, Flora H P, van Bergen, Eline D P, Timmer, Merel A, van Vulpen, Lize F D, Schutgens, Roger E G, de Jong, Pim A, Fischer, Kathelijn, Foppen, Wouter, Cancer, Researchgr. Systems Radiology, Poli Van Creveldkliniek Medisch, Child Health, Circulatory Health, Infection & Immunity, Regenerative Medicine and Stem Cells, MS Radiologie, van Leeuwen, Flora H P, van Bergen, Eline D P, Timmer, Merel A, van Vulpen, Lize F D, Schutgens, Roger E G, de Jong, Pim A, Fischer, Kathelijn, and Foppen, Wouter

Published
2023

24. Monitoring recovery of joints after bleeding: Physical examination and ultrasound are complementary

Author

Cancer, Researchgr. Systems Radiology, Poli Van Creveldkliniek Medisch, Child Health, Circulatory Health, MS Radiologie, van Leeuwen, Flora H P, Fischer, Kathelijn, Foppen, Wouter, van Vulpen, Lize F D, Timmer, Merel A, Cancer, Researchgr. Systems Radiology, Poli Van Creveldkliniek Medisch, Child Health, Circulatory Health, MS Radiologie, van Leeuwen, Flora H P, Fischer, Kathelijn, Foppen, Wouter, van Vulpen, Lize F D, and Timmer, Merel A

Published
2023

25. Proof of concept and feasibility of a blended physiotherapy intervention for persons with haemophilic arthropathy

Author

Child Health, Poli Van Creveldkliniek Medisch, Circulatory Health, Fysiotherapiewetenschap, Infection & Immunity, Brain, Timmer, Merel A, Kuijlaars, Isolde A R, Kloek, Corelien, de Kleijn, Piet, Schutgens, Roger E G, Veenhof, Cindy, Pisters, Martijn F, Child Health, Poli Van Creveldkliniek Medisch, Circulatory Health, Fysiotherapiewetenschap, Infection & Immunity, Brain, Timmer, Merel A, Kuijlaars, Isolde A R, Kloek, Corelien, de Kleijn, Piet, Schutgens, Roger E G, Veenhof, Cindy, and Pisters, Martijn F

Published
2023

28. Can motor proficiency testing predict sports injuries and sports‐induced bleeds in people with haemophilia?

Author

Versloot, Olav, primary, Blokzijl, Johan, additional, Timmer, Merel, additional, Schuuring, Marleen, additional, van Galen, Karin, additional, Kremer Hovinga, Idske, additional, van der Valk, Paul, additional, van Vulpen, Lize, additional, Schutgens, Roger, additional, van Koppenhagen, Casper, additional, van der Net, Janjaap, additional, and Fischer, Kathelijn, additional

Published
2023
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33. Evaluation of Joint Effusions in Patients with Hemophilia Using T2 Mapping at 3-T Magnetic Resonance Imaging Is Feasible and Reproducible.

Author

van Leeuwen, Dr. Flora, van Klei, Janoah, Lena, Dr. Beatrice, van Bergen, Eline, Timmer, Merel, van Vulpen, Lize, Fischer, Dr. Kathelijn, de Jong, Dr. Pim, Bos, Dr. Clemens, and Foppen, Dr. Wouter

Subjects
MAGNETIC resonance imaging, JOINT diseases, HEMOPHILIACS
Abstract

The observed T2 relaxation times in joints without reported joint bleeds may be used as a reference to interpret T2 measurements in hemophilia patients with suspected joint bleeding. T2 relaxometry magnetic resonance imaging (MRI) can differentiate between physiologic and hemorrhagic effusion (>= 5% blood) in vitro because the iron-containing blood shortens the T2 relaxation time. [Extracted from the article]

Published
2023
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35. Proof of concept and feasibility of a blended physiotherapy intervention for persons with haemophilic arthropathy.

Author

Timmer, Merel A., Kuijlaars, Isolde A. R., Kloek, Corelien, de Kleijn, Piet, Schutgens, Roger E. G., Veenhof, Cindy, and Pisters, Martijn F.

Subjects
*PROOF of concept, *PHYSICAL therapy, *JOINT diseases, *INSPECTION & review, *MOBILE apps
Abstract

Background: Regular physiotherapy with a physiotherapist experienced in the field is not feasible for many patients with haemophilia. We, therefore, developed a blended physiotherapy intervention for persons with haemophilic arthropathy (HA) (e‐Exercise HA), integrating face‐to‐face physiotherapy with a smartphone application. Aim: The aim of the study was to determine proof of concept of e‐ Exercise HA and to evaluate feasibility. Methods: Proof of concept was evaluated by a single‐case multiple baseline design. Physical activity (PA) was measured with an accelerometer during a baseline, intervention and post‐intervention phase and analysed using visual inspection and a single case randomisation test. Changes in limitations in activities (Haemophilia Activities List [HAL]) and a General Perceived Effect (GPE) were evaluated between baseline (T0), post‐intervention (T1) and 3 months post‐intervention (T2) using Wilcoxson signed rank test. Feasibility was evaluated by the number of adverse events, attended sessions and open‐ended questions. Results: Nine patients with HA (90% severe, median age 57.5 (quartiles 50.5–63.3) and median HJHS 32 (quartiles 22–36)) were included. PA increased in two patients. HAL increased mean 15 (SD 9) points (p =.001) at T1, and decrease to mean +8 points (SD 7) (p =.012) at T2 compared to T0. At T1 and T2 8/9 participants scored a GPE > 3. Median 5 (range 4–7) face‐to‐face sessions were attended and a median 8 out of 12 information modules were viewed. No intervention‐related bleeds were reported. Conclusion: A blended physiotherapy intervention is feasible for persons with HA and the first indication of the effectiveness of the intervention in decreasing limitations in activities was observed. [ABSTRACT FROM AUTHOR]

Published
2023
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36. How to assess, detect, and manage joint involvement in the era of transformational therapies: Role of point‐of‐care ultrasound.

Author

Minno, Matteo Nicola Dario Di, Martinoli, Carlo, Pasta, Gianluigi, la Corte‐Rodriguez, Hortensia De, Samy, Islam, Stephensen, David, Timmer, Merel A., and Winburn, Ian

Subjects
HEMOPHILIA treatment, ULTRASONIC imaging, JOINTS (Anatomy), POINT-of-care testing, ANKLE
Abstract

Background: Patients with haemophilia experience recurring hemarthroses, mainly involving knees, elbows and ankles, which lead to haemophilic arthropathy, the major chronic complication of haemophilia. With new approaches to haemophilia treatment leading to fewer joint bleeds and, in some cases, no bleeding events, assessing whether current outcome assessment tools provide adequate sensitivity and specificity for management and care of patients with haemophilia is needed. Methods: An overview of current imaging tools for monitoring joint health, novel osteochondral damage and synovial proliferation biomarkers, and the relationship between assessments for functionality and imaging modalities is provided. Usefulness and sensitivity of point‐of‐care ultrasound (POCUS) to complement other assessments and use of ultrasound to monitor haemophilic arthropathy are also examined. Results: This review provides rationale for haemophilia teams to move beyond traditional outcomes in joint imaging, as well as guidance and evidence on assessment of joint health for potential new treatment modalities, such as gene therapy. The role of POCUS in the existing paradigm for haemophilia care and management along with the use of ultrasound as a complement to other outcome assessment tools are also discussed. Finally, the clinical effects of subclinical bleeding on joint function are described, to motivate screening for synovial proliferation. Conclusion: POCUS can facilitate the early detection of joint damage and can monitor disease progression while providing insights into the efficacy of treatment regimens, and should be considered as an essential assessment tool for managing the care of patients with haemophilia. [ABSTRACT FROM AUTHOR]

Published
2023
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40. A Blended Physiotherapy Intervention for Persons With Hemophilic Arthropathy: Development Study

Author

Timmer, Merel, Kloek, Corelien, Kleijn,de, Piet, Kuijlaars, Isolde, Schutgens, R.E.G., Veenhof, Cindy, and Pisters, Martijn

Subjects
mobile phone, exercise, ehealth, hemophilia, blended care, Physiotherapy
Abstract

Background: Joint bleeds are the hallmark of hemophilia, leading to a painful arthritic condition called as hemophilic arthropathy (HA). Exercise programs are frequently used to improve the physical functioning in persons with HA. As hemophilia is a rare disease, there are not many physiotherapists who are experienced in the field of hemophilia, and regular physiotherapy sessions with an experienced physiotherapist in the field of hemophilia are not feasible for persons with HA. Blended care is an innovative intervention that can support persons with HA at home to perform the advised physical activities and exercises and provide self-management information. Objective: The aim of this study was to develop a blended physiotherapy intervention for persons with HA. Methods: The blended physiotherapy intervention, namely, e-Exercise HA was developed by cocreation with physiotherapists, persons with HA, software developers, and researchers. The content of e-Exercise HA was compiled using the first 3 steps of the Center for eHealth Research roadmap model (ie, contextual inquiry, value specification, and design), including people with experience in the development of previous blended physiotherapy interventions, a literature search, and focus groups. Results: A 12-week blended intervention was developed, integrating face-to-face physiotherapy sessions with a web-based app. The intervention consists of information modules for persons with HA and information modules for physiotherapists, a graded activity program using a self-chosen activity, and personalized video-supported exercises. The information modules consist of text blocks, videos, and reflective questions. The patients can receive pop-ups as reminders and give feedback on the performance of the prescribed activities. Conclusions: In this study, we developed a blended physiotherapy intervention for persons with HA, which consists of information modules, a graded activity program, and personalized video-supported exercises.

Published
2020

41. Musculoskeletal ultrasound in hemophilia: Results and recommendations from a global survey and consensus meeting.

Author

UCL - SSS/IREC/SLUC - Pôle St.-Luc, UCL - (SLuc) Service d'hématologie, Bakeer, Nihal, Dover, Saunya, Babyn, Paul, Feldman, Brian M, von Drygalski, Annette, Doria, Andrea S, Ignas, Danial M, Abad, Audrey, Bailey, Cindy, Beggs, Ian, Chang, Eric Y, Dunn, Amy, Funk, Sharon, Gibikote, Sridhar, Goddard, Nicholas, Hilliard, Pamela, Keshava, Shyamkumar N, Kruse-Jarres, Rebecca, Li, Yingjia, Lobet, Sébastien, Manco-Johnson, Marilyn, Martinoli, Carlo, O'Donnell, James S, Papakonstantinou, Olympia, Pergantou, Helen, Poonnoose, Pradeep, Querol, Felipe, Srivastava, Alok, Steiner, Bruno, Strike, Karen, Timmer, Merel, Tyrrell, Pascal N, Vidarsson, Logi, Blanchette, Victor S, UCL - SSS/IREC/SLUC - Pôle St.-Luc, UCL - (SLuc) Service d'hématologie, Bakeer, Nihal, Dover, Saunya, Babyn, Paul, Feldman, Brian M, von Drygalski, Annette, Doria, Andrea S, Ignas, Danial M, Abad, Audrey, Bailey, Cindy, Beggs, Ian, Chang, Eric Y, Dunn, Amy, Funk, Sharon, Gibikote, Sridhar, Goddard, Nicholas, Hilliard, Pamela, Keshava, Shyamkumar N, Kruse-Jarres, Rebecca, Li, Yingjia, Lobet, Sébastien, Manco-Johnson, Marilyn, Martinoli, Carlo, O'Donnell, James S, Papakonstantinou, Olympia, Pergantou, Helen, Poonnoose, Pradeep, Querol, Felipe, Srivastava, Alok, Steiner, Bruno, Strike, Karen, Timmer, Merel, Tyrrell, Pascal N, Vidarsson, Logi, and Blanchette, Victor S

Abstract

For persons with hemophilia, optimization of joint outcomes is an important unmet need. The aim of this initiative was to determine use of ultrasound in evaluating arthropathy in persons with hemophilia, and to move toward consensus among hemophilia care providers regarding the preferred ultrasound protocols for global adaptation. A global survey of hemophilia treatment centers was conducted that focused on understanding how and why ultrasound was being used and endeavored to move toward consensus definitions of both point-of-care musculoskeletal ultrasound (POC-MSKUS) and full diagnostic ultrasound, terminology to describe structures being assessed by ultrasound, and how these assessments should be interpreted. Next, an in-person meeting of an international group of hemophilia health care professionals and patient representatives was held, with the objective of achieving consensus regarding the acquisition and interpretation of POC-MSKUS and full diagnostic ultrasound for use in the assessment of musculoskeletal (MSK) pathologies in persons with hemophilia. The recommendations were that clear definitions of the types of ultrasound examinations should be adopted and that a standardized ultrasound scoring/measurement system should be developed, tested, and implemented. The scoring/measurement system should be tiered to allow for a range of complexity yet maintain the ability for comparison across levels. Ultrasound is an evolving technology increasingly used for the assessment of MSK outcomes in persons with hemophilia. As adoption increases globally for clinical care and research, it will become increasingly important to establish clear guidelines for image acquisition, interpretation, and reporting to ensure accuracy, consistency, and comparability across groups.

Published
2021

42. The Role of Physiotherapy in the New Treatment Landscape for Haemophilia

Author

UCL - SSS/IREC/NMSK - Neuro-musculo-skeletal Lab, UCL - SSS/IREC/CARD - Pôle de recherche cardiovasculaire, UCL - (SLuc) Service de médecine physique et de réadaptation motrice, UCL - (SLuc) Service d'hématologie, Lobet, Sébastien, Timmer, Merel, Königs, Christoph, Stephensen, David, McLaughlin, Paul, Duport, Gaetan, Hermans, Cédric, Mancuso, Maria Elisa, UCL - SSS/IREC/NMSK - Neuro-musculo-skeletal Lab, UCL - SSS/IREC/CARD - Pôle de recherche cardiovasculaire, UCL - (SLuc) Service de médecine physique et de réadaptation motrice, UCL - (SLuc) Service d'hématologie, Lobet, Sébastien, Timmer, Merel, Königs, Christoph, Stephensen, David, McLaughlin, Paul, Duport, Gaetan, Hermans, Cédric, and Mancuso, Maria Elisa

Abstract

The physiotherapist plays an essential role for people with haemophilia, an inherited bleeding disease responsible for musculoskeletal complications. Yet, with the advent of new and advanced therapies, the medical landscape is changing, and physiotherapy must adapt alongside. This paper considers whether there will still be a need for physiotherapy in the era of advanced therapies, and discusses ways in which services should evolve to complement emerging treatment paradigms for haemostasis in people with haemophilia. Ultimately, physiotherapy will remain an important element of care, even for people with little joint damage and low risks in the era of the new mild phenotype. However, competencies will need to evolve, and physiotherapists in both primary care and specialist treatment centres should work with haematology colleagues to develop more sensitive tools for detecting early joint changes. Physiotherapists will also play a crucial role in counselling and physically coaching, monitoring the musculoskeletal status of people with haemophilia who have transitioned to new treatments.

Published
2021

43. The role of physiotherapy in the new treatment landscape for haemophilia

Author

Lobet, Sébastien, Timmer, Merel, Königs, Christoph, Stephensen, David, McLaughlin, Paul, Duport, Gaetan, Hermans, Cédric, Mancuso, Maria Elisa, Lobet, Sébastien, Timmer, Merel, Königs, Christoph, Stephensen, David, McLaughlin, Paul, Duport, Gaetan, Hermans, Cédric, and Mancuso, Maria Elisa

Abstract

The physiotherapist plays an essential role for people with haemophilia, an inherited bleeding disease responsible for musculoskeletal complications. Yet, with the advent of new and advanced therapies, the medical landscape is changing, and physiotherapy must adapt alongside. This paper considers whether there will still be a need for physiotherapy in the era of advanced therapies, and discusses ways in which services should evolve to complement emerging treatment paradigms for haemostasis in people with haemophilia. Ultimately, physiotherapy will remain an important element of care, even for people with little joint damage and low risks in the era of the new mild phenotype. However, competencies will need to evolve, and physiotherapists in both primary care and specialist treatment centres should work with haematology colleagues to develop more sensitive tools for detecting early joint changes. Physiotherapists will also play a crucial role in counselling and physically coaching, monitoring the musculoskeletal status of people with haemophilia who have transitioned to new treatments.

Published
2021

45. Coordinating physiotherapy care for persons with haemophilia

Author

Poli Van Creveldkliniek Medisch, Child Health, Circulatory Health, Infection & Immunity, Fysiotherapiewetenschap, Brain, Timmer, Merel A., Blokzijl, Johan, Schutgens, Roger E. G., Veenhof, Cindy, Pisters, Martijn F., Poli Van Creveldkliniek Medisch, Child Health, Circulatory Health, Infection & Immunity, Fysiotherapiewetenschap, Brain, Timmer, Merel A., Blokzijl, Johan, Schutgens, Roger E. G., Veenhof, Cindy, and Pisters, Martijn F.

Published
2021

46. Generic PROMIS item banks in adults with hemophilia for patient-reported outcome assessment: Feasibility, measurement properties, and relevance

Author

Poli Van Creveldkliniek Medisch, Child Health, Circulatory Health, Kuijlaars, Isolde A R, Teela, Lorynn, van Vulpen, Lize F D, Timmer, Merel A, Coppens, Michiel, Gouw, Samantha C, Peters, Marjolein, Kruip, Marieke J H A, Cnossen, Marjon H, Muis, Jelmer J, van Hoorn, Evelien S, Haverman, Lotte, Fischer, Kathelijn, Poli Van Creveldkliniek Medisch, Child Health, Circulatory Health, Kuijlaars, Isolde A R, Teela, Lorynn, van Vulpen, Lize F D, Timmer, Merel A, Coppens, Michiel, Gouw, Samantha C, Peters, Marjolein, Kruip, Marieke J H A, Cnossen, Marjon H, Muis, Jelmer J, van Hoorn, Evelien S, Haverman, Lotte, and Fischer, Kathelijn

Published
2021

47. The Role of Physiotherapy in the New Treatment Landscape for Haemophilia

Author

Poli Van Creveldkliniek Medisch, Circulatory Health, Lobet, Sébastien, Timmer, Merel, Königs, Christoph, Stephensen, David, McLaughlin, Paul, Duport, Gaetan, Hermans, Cédric, Mancuso, Maria Elisa, Poli Van Creveldkliniek Medisch, Circulatory Health, Lobet, Sébastien, Timmer, Merel, Königs, Christoph, Stephensen, David, McLaughlin, Paul, Duport, Gaetan, Hermans, Cédric, and Mancuso, Maria Elisa

Published
2021

48. Musculoskeletal ultrasound in hemophilia: Results and recommendations from a global survey and consensus meeting

Author

Child Health, Poli Van Creveldkliniek Medisch, Circulatory Health, Bakeer, Nihal, Dover, Saunya, Babyn, Paul, Feldman, Brian M, von Drygalski, Annette, Doria, Andrea S, Ignas, Danial M, Abad, Audrey, Bailey, Cindy, Beggs, Ian, Chang, Eric Y, Dunn, Amy, Funk, Sharon, Gibikote, Sridhar, Goddard, Nicholas, Hilliard, Pamela, Keshava, Shyamkumar N, Kruse-Jarres, Rebecca, Li, Yingjia, Lobet, Sébastien, Manco-Johnson, Marilyn, Martinoli, Carlo, O'Donnell, James S, Papakonstantinou, Olympia, Pergantou, Helen, Poonnoose, Pradeep, Querol, Felipe, Srivastava, Alok, Steiner, Bruno, Strike, Karen, Timmer, Merel, Tyrrell, Pascal N, Vidarsson, Logi, Blanchette, Victor S, Child Health, Poli Van Creveldkliniek Medisch, Circulatory Health, Bakeer, Nihal, Dover, Saunya, Babyn, Paul, Feldman, Brian M, von Drygalski, Annette, Doria, Andrea S, Ignas, Danial M, Abad, Audrey, Bailey, Cindy, Beggs, Ian, Chang, Eric Y, Dunn, Amy, Funk, Sharon, Gibikote, Sridhar, Goddard, Nicholas, Hilliard, Pamela, Keshava, Shyamkumar N, Kruse-Jarres, Rebecca, Li, Yingjia, Lobet, Sébastien, Manco-Johnson, Marilyn, Martinoli, Carlo, O'Donnell, James S, Papakonstantinou, Olympia, Pergantou, Helen, Poonnoose, Pradeep, Querol, Felipe, Srivastava, Alok, Steiner, Bruno, Strike, Karen, Timmer, Merel, Tyrrell, Pascal N, Vidarsson, Logi, and Blanchette, Victor S

Published
2021

49. Assessing the test-retest reliability and smallest detectable change of the Haemophilia Activities List

Author

Poli Van Creveldkliniek Medisch, Circulatory Health, KGW-algemeen, Kinderbewegingszorg patientenzorg, Child Health, Kuijlaars, Isolde A R, van Emst, Madelon, van der Net, Janjaap, Timmer, Merel A, Fischer, Kathelijn, Poli Van Creveldkliniek Medisch, Circulatory Health, KGW-algemeen, Kinderbewegingszorg patientenzorg, Child Health, Kuijlaars, Isolde A R, van Emst, Madelon, van der Net, Janjaap, Timmer, Merel A, and Fischer, Kathelijn

Published
2021

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