Relationship between care pathway features and use or non-use of orthotic devices by individuals with Charcot-Marie-Tooth disease: a cross-sectional, exploratory study

Blouin, Cédric; Perrier, Antoine; Denormandie, P.; Genêt, F.

doi:10.1080/09638288.2023.2208883

Cited by 3 publications

(5 citation statements)

References 42 publications

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“…We found that 56% of CMT subjects used the prescribed lower limb orthoses, with 39% of patients wearing shoe inserts and 23% carrying AFOs, which is in keeping with what reported by Pisciotta et al from the Italian registry. 2 In contrast, both Prada and colleagues 4 and Blouin and coauthors 5 found more frequent use for both shoe inserts (55% and 47%, respectively) and AFOs (30% and 46%, respectively). In our series, patients answered on a voluntary basis to several questionnaires, so they were not biased towards the use of orthotics, as may happen for a population specifically investigated for orthotic devices as in the case of the study by Blouin et al 5 or where patients lacking information about use of insoles or orthoses were excluded as for the series by Prada et al .…”

Section: Discussionmentioning

confidence: 89%

“…2 In contrast, both Prada and colleagues 4 and Blouin and coauthors 5 found more frequent use for both shoe inserts (55% and 47%, respectively) and AFOs (30% and 46%, respectively). In our series, patients answered on a voluntary basis to several questionnaires, so they were not biased towards the use of orthotics, as may happen for a population specifically investigated for orthotic devices as in the case of the study by Blouin et al 5 or where patients lacking information about use of insoles or orthoses were excluded as for the series by Prada et al 4 We were not able to retrieve any data from the literature to compare with the rate of almost 20% of orthopaedic shoe users among our patients.…”

Section: Discussionmentioning

confidence: 99%

“…A very recent report by Bluoin and coauthors, assessing prescription and use of foot orthotics in France, found that out of 795 CMT patients who were prescribed to wear orthotic devices only 391 were users. 5 Taken all these considerations together, we aimed at exploring the patients' direct experience with regard to benefit, tolerance and disadvantages of the prescribed devices.…”

Section: Neuromuscularmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

“…Their reported use ranges between 25% and 55% for shoe inserts and 19% and 49% for AFOs, across different large cohorts of CMT patients. [2][3][4][5] However, data regarding the employment of the different types of orthotics in real life and the related patients' issues and compliance are still scanty. Indeed, clinical experience indicates that patients often find the prescribed orthotic device…”

Section: Introductionmentioning

confidence: 99%

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Use, tolerability, benefits and side effects of orthotic devices in Charcot-Marie-Tooth disease

Bertini,

Manganelli,

Fabrizi

et al. 2023

J Neurol Neurosurg Psychiatry

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BackgroundShoe inserts, orthopaedic shoes, ankle-foot orthoses (AFOs) are important devices in Charcot-Marie-Tooth disease (CMT) management, but data about use, benefits and tolerance are scanty.MethodsWe administered to Italian CMT Registry patients an online ad hoc questionnaire investigating use, complications and perceived benefit/tolerability/emotional distress of shoe inserts, orthopaedic shoes, AFOs and other orthoses/aids. Patients were also asked to fill in the Quebec User Evaluation of Satisfaction with assistive Technology questionnaire, rating satisfaction with currently used AFO and related services.ResultsWe analysed answers from 266 CMT patients. Seventy per cent of subjects were prescribed lower limb orthoses, but 19% did not used them. Overall, 39% of subjects wore shoe inserts, 18% orthopaedic shoes and 23% AFOs. Frequency of abandonment was high: 24% for shoe inserts, 28% for orthopaedic shoes and 31% for AFOs. Complications were reported by 59% of patients and were more frequently related to AFOs (69%). AFO users experienced greater emotional distress and reduced tolerability as compared with shoe inserts (p<0.001) and orthopaedic shoes (p=0.003 and p=0.045, respectively). Disease severity, degree of foot weakness, customisation and timing for customisation were determinant factors in AFOs’ tolerability. Quality of professional and follow-up services were perceived issues.ConclusionsThe majority of CMT patients is prescribed shoe inserts, orthopaedic shoes and/or AFOs. Although perceived benefits and tolerability are rather good, there is a high rate of complications, potentially inappropriate prescriptions and considerable emotional distress, which reduce the use of AFOs. A rational, patient-oriented and multidisciplinary approach to orthoses prescription must be encouraged.

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Section: Discussionmentioning

confidence: 89%

Section: Discussionmentioning

confidence: 99%

Section: Neuromuscularmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Use, tolerability, benefits and side effects of orthotic devices in Charcot-Marie-Tooth disease

Bertini,

Manganelli,

Fabrizi

et al. 2023

J Neurol Neurosurg Psychiatry

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The effect of ankle‐foot orthoses on gait characteristics in people with Charcot‐Marie‐Tooth disease: A systematic review and meta‐analysis

Kim,

Frecklington,

Philps

et al. 2024

Journal of Foot and Ankle Research

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IntroductionAnkle‐foot orthoses (AFOs) are commonly prescribed for people with Charcot‐Marie‐Tooth disease (CMT) to improve gait efficiency and reduce the occurrence of tripping and falls. The aim of this study was to systematically review evidence on the effects of AFOs on gait kinematics and kinetics and postural stability/balance in people with CMT.MethodsStudies were identified from electronic databases and screened for inclusion online using Rayyan. Data from all eligible studies were extracted into a standardised Excel spreadsheet. Methodological quality was assessed using the Joanna Briggs Institute Critical Appraisal Checklists. Where available, continuous outcomes were pooled to estimate standardised mean differences in random‐effects meta‐analyses.ResultsA total of 15 studies were included with variable methodological quality. Sample sizes ranged from 1 to 32 with significant variability in participant characteristics, AFO designs and testing procedures. Data from eight studies were available for meta‐analysis. Although AFOs impacted walking velocity, stride length, step length, cadence, ankle dorsiflexion, plantarflexion, knee and hip flexion and ankle plantarflexion and dorsiflexion moments, the effect sizes were small‐to‐moderate and non‐significant. There were insufficient data available for pooled analyses of outcomes related to postural stability/balance.ConclusionAlthough AFOs positively affect a number of gait and balance parameters, the small participant numbers, variability in participant characteristics, AFO designs and testing procedures adopted by the available studies resulted in the absence of statistically significant effects when data were pooled. The results from this review also highlight the importance of device customisation based on the individual needs of people with CMT and their degree of gait impairment.

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Ankle-Foot Orthoses Design Shortcomings: User Complaint Survey

Zielstra,

Beck,

Waterval

2024

Biosystems &Amp; Biorobotics

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Relationship between care pathway features and use or non-use of orthotic devices by individuals with Charcot-Marie-Tooth disease: a cross-sectional, exploratory study

Cited by 3 publications

References 42 publications

Use, tolerability, benefits and side effects of orthotic devices in Charcot-Marie-Tooth disease

Use, tolerability, benefits and side effects of orthotic devices in Charcot-Marie-Tooth disease

The effect of ankle‐foot orthoses on gait characteristics in people with Charcot‐Marie‐Tooth disease: A systematic review and meta‐analysis

Ankle-Foot Orthoses Design Shortcomings: User Complaint Survey

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