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

Abstract

Purpose

Orthotic devices may be prescribed for the management of foot and ankle deformities caused by Charcot-Marie-Tooth disease (CMT). However, the actual use of these devices is variable. No studies have evaluated the impact of prescription, delivery and follow-up of orthotic devices on their use.

We aimed to describe the relationship between the pathways followed by individuals with CMT and orthotic device use.

Materials and methods

Exploratory, cross-sectional, 35-item survey of orthotic device management. Individuals with CMT were recruited from CMT-France Association.

Results

Of the 940 respondents, 795 were included, mean age of 52.9 (SD 16.9) years. Rate of orthotic device use was 49.2% (391/795). The most frequent reason for non-use was a poor fit. Non-use was related to the orthotic device type, the health professionals consulted, and the severity of the CMT-related impairments. Follow-up visits (38.7%), re-evaluation of orthotic devices (25.3%) and consultations with the Physical and Rehabilitation Medicine physician were infrequent (28.3%).

Conclusions

Orthotic devices are massively underused. Follow-up and re-evaluation are infrequent. Care pathways, prescription and delivery of orthotic devices must be optimized to meet the expectations of people with CMT. Device fitting, individual needs, and changes in the clinical state must be re-evaluated regularly by specialists to improve orthotic device use.

IMPLICATIONS FOR REHABILITATION

• Foot deformities and foot drop contribute to disability in people with Charcot Marie Tooth Disease but use of orthotic devices is poor.

• To improve orthotic device use, regular multidisciplinary consultations and regular re-evaluation of the device by specialists in neuro-orthopaedics are important.

• The device fit should be regularly re-evaluated by the prescribing doctor or the practitioner who made the device.

• Regular multimodal evaluation of foot deformity, including muscle strength and length, and the individual’s needs and expectations is also important to improve orthotic device use.

Keywords:

• Rehabilitation
• Foot orthoses
• Hereditary sensory and motor neuropathy
• Foot deformities
• Orthotic devices

Acknowledgements

This research was supported by grants from the Agence Régionale de Santé Île-de-France and the Institut de Santé Parasport Connecté (ISPC). We are grateful to CMT-France Association for disseminating our survey. We would like to thank Dr. Laurence Mailhan for her participation in the conception of the survey. We thank Johanna Robertson for language assistance and constructive criticism, and Lionelle Nkam for statistical support.

Authors’ contributions

Cédric Blouin co-conceived the idea for the study. He was involved in the creation of the survey, data collection, then interpreted the data, wrote the first version of the manuscript and revised it until the final version. Antoine Perrier co-conceived the idea for the study. He was involved in the creation of the survey, data collection, and commented on all versions of the manuscript until the final version. Philippe Denormandie co-conceived the idea for the study. He was involved in the creation of the survey, data collection, and commented on the draft versions of the manuscript. François Genêt co-conceived the idea for the study. He was involved in the creation of the survey, data collection, data interpretation, and commented on the first and subsequent versions of the manuscript. All authors read and approved the final version of the manuscript.

Disclosure statement

The authors report there are no competing interests to declare

Additional information

Funding

This research was supported by the Agence Régionale de Santé Île-de-France and the Institut de Santé Parasport Connecté (ISPC).