The Evidence for Occupational Therapy for Adults with Neuromuscular Diseases: A Systematic Review

Cup, Edith; Sturkenboom, Ingrid H.W.M.; Pieterse, Allan J.; Hendricks, Henk T.; Engelen, B.G.M. van; Oostendorp, R.A.B.; Wilt, Gert Jan van der

doi:10.3928/15394492-20080101-02

Cited by 12 publications

(12 citation statements)

References 15 publications

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“…As MD1 is classified as a neuromuscular disease, muscle weakness and fatigue are expected and treatment is aimed at improving body functions like aerobic capacity, breathing or hand function [14,17,18,39,40]. However, the additional cognitive and social barriers may explain why adherence to exercise programs is limited [14].…”

Section: Discussionmentioning

confidence: 99%

Living with myotonic dystrophy; what can be learned from couples? a qualitative study

Cup

Kinébanian²,

Satink

et al. 2011

BMC Neurol

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BackgroundMyotonic dystrophy type 1 (MD1) is one of the most prevalent neuromuscular diseases, yet very little is known about how MD1 affects the lives of couples and how they themselves manage individually and together. To better match health care to their problems, concerns and needs, it is important to understand their perspective of living with this hereditary, systemic disease.MethodsA qualitative study was carried out with a purposive sample of five middle-aged couples, including three men and two women with MD1 and their partners. Fifteen in-depth interviews with persons with MD1, with their partners and with both of them as a couple took place in the homes of the couples in two cities and three villages in the Netherlands in 2009.ResultsPeople with MD1 associate this progressive, neuromuscular condition with decreasing abilities, describing physical, cognitive and psychosocial barriers to everyday activities and social participation. Partners highlighted the increasing care giving burden, giving directions and using reminders to compensate for the lack of initiative and avoidant behaviour due to MD1. Couples portrayed the dilemmas and frustrations of renegotiating roles and responsibilities; stressing the importance of achieving a balance between individual and shared activities. All participants experienced a lack of understanding from relatives, friends, and society, including health care, leading to withdrawal and isolation. Health care was perceived as fragmentary, with specialists focusing on specific aspects of the disease rather than seeking to understand the implications of the systemic disorder on daily life.ConclusionsLearning from these couples has resulted in recommendations that challenge the tendency to treat MD1 as a condition with primarily physical impairments. It is vital to listen to couples, to elicit the impact of MD1, as a multisystem disorder that influences every aspect of their life together. Couple management, supporting the self-management skills of both partners is proposed as a way of reducing the mismatch between health services and health needs.

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Section: Discussionmentioning

confidence: 99%

Living with myotonic dystrophy; what can be learned from couples? a qualitative study

Cup

Kinébanian²,

Satink

et al. 2011

BMC Neurol

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“…OT and ST advice was fully implemented in primary care, which is remarkable, given that passive dissemination of information (only sending the advice) is generally an ineffective strategy [9]. Our high rate of implementation is very likely related to the current underuse of OT and ST [2], which, in turn, may result from the fact that OT and ST services are generally less well-known to patients and physicians, and the scarcity of scientific evidence for their effectiveness [6][7][8].…”

Section: Discussionmentioning

confidence: 98%

“…Unfortunately, such therapy is not always adequately provided to meet the complex needs of this patient population [2][3][4][5]. This may result from the fact that patients and referring physicians are not fully aware of existing treatment opportunities, the weak evidence for OT, PT and ST in NMD [6][7][8], and the scarcity of therapists in primary care who have sufficient clinical experience with these patients [4,5].…”

Section: Introductionmentioning

confidence: 99%

“…This advice is based on the best available scientific evidence and clinical experience. For OT, scientific evidence consists of indications for the efficacy of hand training in muscular diseases [7]; for PT, there is weak evidence of efficacy for strengthening exercise in combination with aerobic training in different types of NMD and for breathing exercises in some specific forms of NMD [6]; for ST, evidence indicates that correction of head position in patients with OPMD improves swallowing [8]. There is no evidence of efficacy of interventions such as education of patients and family, practicing skills or activities or the use of assistive devices.…”

Section: Introductionmentioning

confidence: 99%

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Implementation of multidisciplinary advice to allied health care professionals regarding the management of their patients with neuromuscular diseases

Cup¹,

Pieterse²,

Hendricks³

et al. 2010

Disability and Rehabilitation

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“…The systematic review with the smallest number of participants included 18 individuals in total (43), whilst the one with the largest sample included 779 (44), followed by 757 (45) and 435 (16), which investigated, respectively, the effect of multidisciplinary care in individuals living with MND (44), and any type of interventions in individuals with NMDs (45), and physical therapy in people with HD (16) (see Additional file 2).…”

Section: Search and Selection Of Included Reviewsmentioning

confidence: 99%

Physical activity and exercise interventions for people with rare neurological disorders: a scoping review of systematic reviews

Buscemi

Boaz²,

Dawes

et al. 2019

Preprint

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Background: People living with rare neurological conditions (RNCs) often face common physical, cognitive and psychological challenges that lead to reduced physical activity and associated deconditioning. Physical activity interventions are routinely utilised to address disease specific limitations with the intention of promoting participation in people with RNCs. This scoping review aimed to synthesise the body of evidence for such interventions as they are applied across a wide range of RNCs. Methods: We undertook a scoping review of systematic reviews of any type of physical activity and exercise interventions for adults with neuromuscular diseases, motor neurone disease, Huntington’s disease, progressive supranuclear palsy, multiple system atrophy, inherited ataxias and hereditary spastic paraplegia. The reviews were included if they reported at least one outcome that aimed to increase physical activity level at either the body structure/function, activity and/or participation levels. Results: Sixty-two articles were full-text screened of which 27 were included. Most studies involved interventions in people with neuromuscular diseases. No reviews of interventions in hereditary spastic paraparesis were identified. The majority of reviews included studies of structured exercise using outcome measures at the level of body function and functional activity. Interventions were grouped as: i) combined interventions; ii) muscle strength training; iii) respiratory training; iv) aerobic training. Frequency, intensity, time and type of structured exercise utilised varied considerably across studies. Most studies were methodologically limited by small sample sizes, variation in exercise dose and training duration.Conclusions: To date, primary attention has been given to structured exercise interventions, which have demonstrated to have a low to uncertain level of evidence. Novel approaches to implementing common interventions and modalities are needed to increase accessibility and engagement in physical activity irrespective of disease type. Further exploration is warranted to achieve consensus on outcome measures that reflect areas of importance and relevance to people with RNCs.

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The Evidence for Occupational Therapy for Adults with Neuromuscular Diseases: A Systematic Review

Cited by 12 publications

References 15 publications

Living with myotonic dystrophy; what can be learned from couples? a qualitative study

Living with myotonic dystrophy; what can be learned from couples? a qualitative study

Implementation of multidisciplinary advice to allied health care professionals regarding the management of their patients with neuromuscular diseases

Physical activity and exercise interventions for people with rare neurological disorders: a scoping review of systematic reviews

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