Wheelchair mobility, motor performance and participation of adult wheelchair users with ARSACS: a cross-sectional study

Bourassa, Julie; Routhier, François; Gagnon, Cynthia; Rahn, Caroline; Hébert, Luc J.; St-Gelais, Raphaël; Rodrigue, Xavier; Brais, Bernard; Best, Krista L.

doi:10.1080/17483107.2020.1858195

Cited by 6 publications

(21 citation statements)

References 46 publications

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“…These restrictions are highly variable according to the diversity of clinical pictures seen in ARSACS (11). Also, people who use wheelchair or walking aid shows a lower level of participation (65), the same for people age 50 and older (52). People affected can also present slowness of performing daily activities (56).…”

Section: Results Part 1: Comparison Between Literature and Interviewsmentioning

confidence: 99%

“…These di culties can partly be explained by the progression of the physical limitations and cognitive rigidity (137). They can lead to the need for a physicaly nondemanding job in an adapted workplace or to be unemployed (52). Another study reports that men with ARSACS have poorer social adaptation to work than the general population (135).…”

Section: Results Part 1: Comparison Between Literature and Interviewsmentioning

confidence: 99%

“…There are several functions that are affected by ARSACS: lower limbs, upper limbs, balance, strength, coordination, bladder and bowel functions, sexual functions, dysarthria, eye function, dysphagia, physical activities, and ADLs.Lower limbs and mobility. Even if the literature in ARSACS is scarce, several papers report impaired walking(31)(32)(33)(34), progressive loss of mobility(7, 32, 39, 53, 55-57, 60, 62-75) and the need to use a walking aid early on and progressively move on to a wheelchair(32,35, 38,40,41,45, 46,52,57, 65, 68, 69,71,72,74,(76)(77)(78)(79)(80)(81)(82)(83)(84)(85)(86)(87)). In the sample, 8/12 participants report impacts of this progressive loss of mobility.…”

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confidence: 99%

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Documenting manifestations and impacts of recessive ataxia to develop patient-reported outcome.

Tremblay

Girard-Côté

Brais

et al. 2022

Preprint

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Background. Autosomal recessive cerebellar ataxias (ARCA) are a group of rare inherited disorders characterized by degeneration or abnormal development of cerebellum. Autosomal recessive spastic ataxia of Charlevoix-Saguenay (ARSACS) is the second most prevalent in Europe. Objectives. The aim of this study is to provide a better understanding of manifestations and impacts of ARSACS. Methods. A systematic review of literature has been conducted followed by a qualitative study using semi-structured interviews and discussion groups to get the experience of people affected. Results. According to the PROMIS framework, results show manifestations and impacts in three components of health: physical, mental, and social. Fatigue and struggles with balance and dexterity are the are the physical manifestations of the disease most often cited by participants. Negative affects like frustration and depression are among the mental health impacts with some loss in cognitive abilities. Social health is the least documented component; nonetheless, people with the disease report significant impacts in terms of social relationships, activities and work. Conclusions. These findings shed a new light on the experience of people with recessive ataxia and identify key aspects to assess to improve their overall health.

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Section: Results Part 1: Comparison Between Literature and Interviewsmentioning

confidence: 99%

Section: Results Part 1: Comparison Between Literature and Interviewsmentioning

confidence: 99%

mentioning

confidence: 99%

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Documenting manifestations and impacts of recessive ataxia to develop patient-reported outcome.

Tremblay

Girard-Côté

Brais

et al. 2022

Preprint

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“…Even if the literature in ARSACS is scarce, several papers report impaired walking [ 1 – 3 , 19 , 20 , 23 , 27 , 28 , 36 , 56 , 57 , 59 , 60 , 66 , 72 , 79 – 81 , 83 , 87 , 91 , 102 , 103 , 106 , 107 , 116 , 117 , 135 , 140 , 143 ], progressive loss of mobility [ 4 , 12 , 14 , 15 , 28 , 40 , 46 , 48 , 49 , 52 , 56 , 72 , 76 , 102 , 103 , 113 , 116 , 117 , 119 , 120 , 123 , 128 , 131 ] and the need to use a walking aid early on and progressively move on to a wheelchair [ 4 , 5 , 7 , 19 , 20 , 46 , 48 , 49 , 51 , 60 , 63 , 64 , 66 , 74 , 76 , 77 , ...…”

Section: Physical Healthmentioning

confidence: 99%

“…Balance difficulties are clearly reported in the literature [ 1 – 3 , 5 , 12 , 13 , 19 , 22 , 28 , 36 , 46 , 48 , 49 , 59 , 64 , 71 , 76 , 78 – 80 , 83 , 87 , 89 , 99 , 106 , 116 , 117 , 119 , 123 , 133 , 140 , 141 , 143 , 144 ]. Almost all participants reported experiencing problems with balance.…”

Section: Physical Healthmentioning

confidence: 99%

Documenting manifestations and impacts of autosomal recessive spastic ataxia of Charlevoix–Saguenay to develop patient-reported outcome

Tremblay

Girard-Côté

Brais

et al. 2022

Orphanet J Rare Dis

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Background Autosomal recessive cerebellar ataxias (ARCA) are a group of rare inherited disorders characterized by degeneration or abnormal development of the cerebellum. Autosomal recessive spastic ataxia of Charlevoix–Saguenay (ARSACS) is one of the most prevalent in Europe. Objectives The aim of this study is to provide a better understanding of the manifestations and impacts of ARSACS. Methods A systematic review of the literature was conducted, followed by a qualitative study using semistructured interviews and discussion groups to obtain the experience of people affected. Results According to the PROMIS framework, the results show manifestations and impacts in three components of health: physical, mental, and social. Fatigue and struggles with balance and dexterity are the physical manifestations of the disease most often cited by participants. Negative affects such as frustration and depression are among the mental health impacts with some loss in cognitive abilities. Social health is the least documented component; nonetheless, people with the disease report significant impacts in terms of social relationships, activities and work. Conclusions These findings shed new light on the experience of people with recessive ataxia and identify key aspects to assess to improve their overall health.

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Conceptual mapping proposed to comprehend the effect of wheelchair mobility on social participation and quality of life: a systematic review*

Ferretti

Curi

Andrade

et al. 2022

Disability and Rehabilitation: Assistive Technology

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Wheelchair mobility, motor performance and participation of adult wheelchair users with ARSACS: a cross-sectional study

Cited by 6 publications

References 46 publications

Documenting manifestations and impacts of recessive ataxia to develop patient-reported outcome.

Documenting manifestations and impacts of recessive ataxia to develop patient-reported outcome.

Documenting manifestations and impacts of autosomal recessive spastic ataxia of Charlevoix–Saguenay to develop patient-reported outcome

Conceptual mapping proposed to comprehend the effect of wheelchair mobility on social participation and quality of life: a systematic review*

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