Past the tipping point: a qualitative study of the views and experiences of men with haemophilia regarding mobility, balance, and falls

Taylor, Stephanie; Toyé, Francine; Donovan‐Hall, Maggie; Barker, Karen

doi:10.1080/09638288.2021.1988731

Cited by 4 publications

(10 citation statements)

References 47 publications

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“… 43 , 44 Personal barriers to PA may include family responsibilities, job strain, stress, lack of time, motivation, support and resources, as well as pain, fair of injury, lack of energy and a perception that it is too difficult. 45 , 46 , 47 , 48 , 49 The challenges of being physically active for those PWH in the older age range within this category or those who have had limited access to treatment are probably greater than for many other PWH. It is likely that they grew up with advice to avoid PA, have had negative experiences with PA‐related bleeds, and are now living with sequelae of haemophilic arthropathy, pain and functional limitations.…”

Section: Physical Activity: Status Influences and Recommendationsmentioning

confidence: 99%

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Promoting physical activity for people with haemophilia in the age of new treatments

et al. 2022

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Haemophilia treatment has seen great advances in recent years with an accompanied reduced risk of physical activity (PA) related bleeds. Based on its known health benefits, people with haemophilia (PWH) are currently encouraged to regularly engage in PA. However, this may not always translate to increased levels of PA. In this narrative review we aim to provide a brief overview of what is currently understood regarding PA levels and influences for the three broad age groups of children and adolescents, adults and older adults. We also provide recommendations for members of the haemophilia team on important aspects related to promotion of PA in their clinical practice. We highlight that PA behaviour is multifactorial and that many PWH still have limited access to adequate care. Whilst some still face unique challenges to being more physically active, overall, the barriers and facilitators to activity are very similar to that of the general population.

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Section: Physical Activity: Status Influences and Recommendationsmentioning

confidence: 99%

“… 21 For older PWH, barriers to PA include pain, fear of falls and injury, lack of energy, motivation, support, resources, confidence and transport. 45 , 46 , 47 , 48 , 56 …”

Section: Physical Activity: Status Influences and Recommendationsmentioning

confidence: 99%

Promoting physical activity for people with haemophilia in the age of new treatments

et al. 2022

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“…With the ageing haemophilia population, monitoring balance and confidence to move has been highlighted in previous studies. 27,9 Tripping and walking on uneven surfaces has also been highlighted as an issue for PWH due to severe lower limb arthropathy. 27,28 Being able to monitor confidence and ability to step is important as it allows the MDT to intervene and help maintain function and prevent falls.…”

Section: Discussionmentioning

confidence: 99%

“…With the ageing haemophilia population, monitoring balance and confidence to move has been highlighted in previous studies 27,9 . Tripping and walking on uneven surfaces has also been highlighted as an issue for PWH due to severe lower limb arthropathy 27,28 .…”

Section: Discussionmentioning

confidence: 99%

Validity of the four‐square step test in persons with haemophilia

2022

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Introduction Recurrent bleeds into joints causes arthropathy leading to pain and reduced joint movement. This may cause a reduction in postural balance and increase the falls risk in patients with haemophilia (PWH). With an ageing PWH population the need to assess functional balance in clinic will be essential to monitor function and implement interventions to help maintain balance and prevent falls. Aim To assess the utility of the Four‐Square Step Test (FSST) in PWH. Methods 80 PWH of all severity types were recruited and underwent a battery of outcome measures: FSST, Timed up & go (TUG), Short performance physical battery (SPPB), Haemophilia Activity List (HAL), ABC confidence questionnaire, and Haemophilia Joint Health score (HJHS). Demographics were collected, together with self‐reported falls/trips history. Results All 80 participants were able to complete all test measures. Median age 44.5 years. Number of participants reporting falls ranged from 23% in severe to 3% in mild. Recent trips 53% severe to 17% mild. Excellent Inter and intra‐reliability, ICC of .981 (CI .953–.992), P < .001 and ICC .989 (.983‐.993) P < .001, respectively. Strong correlations between FSST and TUG/ SPPB .753 and ‐.728, moderate correlation between FSST and ABC/HAL ‐.484, ‐.464 P < .01. Conclusion FSST is a valid and safe measure to use in PWH. It correlates strongly with other functional measures, has excellent inter and intra rater reliability. FSST correlates with age rather than severity type and provides information to the clinician on the speed/ability to change direction and clear an obstacle. ABC questionnaire was able to differentiate between severities and offers insight into patient confidence to move. SPPB had a ceiling effect with 52/80 scoring 12 and may not be suitable for PWH.

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“…5 Unlike many other rheumatological conditions, haemophilia associated arthropathy frequently starts at a young age and can detrimentally affect every aspect of working and home life for affected individuals. 6 Current treatments are limited which makes the longevity of the arthropathy even more challenging for patients and clinicians. Conservative management such as physiotherapy, intra articular steroid injections and radioactive synovectomy often confer shortlived effects.…”

Section: Introductionmentioning

confidence: 99%

A single centre, open label, pilot study evaluating the effect of intra‐articular hyaluronic acid injection on pain and functionality when injected into the ankle (tibio‐talar and sub‐talar) joint in patients with haemophilic arthropathy

et al. 2022

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Aims Ankle arthropathy commonly affects persons with haemophilia (PWH). Joint damage causes loss of movement, pain and reduced function. Current treatments are limited. Viscosupplementation has been used to treat other patient groups with joint damage. Viscosupplements serve to augment or act as a substitute for synovial fluid and may ameliorate the effects of cartilage loss by cushioning joints and reducing pain. This study evaluated intra‐articular Ostenil Plus™ (HA) for ankle arthropathy in PWH. Reduction in pain was the primary outcome. Methods A single centre open label pilot study. PWH and significant ankle arthropathy, according to MRI scores, were recruited. Participants received intra‐articular HA injections at baseline and 6 months. Follow up assessments were completed three‐monthly for 1 year. Pain was assessed by the Visual Analogue Scale (VAS). Participant perceptions of overall changes to pain, function and quality of life were sought. Results Twenty‐four participants were recruited, three withdrew. Twenty‐six joints were injected. Twenty participants had severe haemophilia. Mean age 35 years. Participants reported significant reduction in pain over the study. VAS baseline: 5.62; 6 month 3.92; 12‐month 3.42, P < .0001. Joint function improved together with ankle HJHS. No change was seen for EQ‐5D‐5L. Sixteen participants reported reductions in ankle pain and stiffness and greater confidence in undertaking physical activities. No significant adverse reactions were reported. Conclusion Ostenil Plus™ treatment improves pain, function and patient perception of functional ability in PWH and ankle arthropathy. This study supports the use of HA as a safe treatment in PWH.

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Past the tipping point: a qualitative study of the views and experiences of men with haemophilia regarding mobility, balance, and falls

Cited by 4 publications

References 47 publications

Promoting physical activity for people with haemophilia in the age of new treatments

Promoting physical activity for people with haemophilia in the age of new treatments

Validity of the four‐square step test in persons with haemophilia

A single centre, open label, pilot study evaluating the effect of intra‐articular hyaluronic acid injection on pain and functionality when injected into the ankle (tibio‐talar and sub‐talar) joint in patients with haemophilic arthropathy

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