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

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,...

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Published inJournal of neurology, neurosurgery and psychiatry Vol. 95; no. 5; pp. 434 - 441
Main Authors Bertini, Alessandro, Manganelli, Fiore, Fabrizi, Gian Maria, Schenone, Angelo, Santoro, Lucio, Cavallaro, Tiziana, Tagliapietra, Matteo, Grandis, Marina, Previtali, Stefano Carlo, Falzone, Yuri Matteo, Allegri, Isabella, Padua, Luca, Pazzaglia, Costanza, Tramacere, Irene, Cavalca, Eleonora, Saveri, Paola, Quattrone, Andrea, Valentino, Paola, Tozza, Stefano, Gentile, Luca, Russo, Massimo, Mazzeo, Anna, Vita, Giuseppe, Prada, Valeria, Zuccarino, Riccardo, Ferraro, Francesco, Pisciotta, Chiara, Pareyson, Davide, Schirinzi, Giulia, Montesano, Maria, Nuzzo, Sara, Oggiano, Francesca, Calabrese, Daniela, Gemelli, Chiara, Scarlato, Marina, Spina, Emanuele, Longo, Maria, Occhipinti, Giuseppe, Iabichella, Giacomo, Barone, Stefania
Format Journal Article
LanguageEnglish
Published England BMJ Publishing Group Ltd 01.05.2024
BMJ Publishing Group LTD
BMJ Publishing Group
SeriesOriginal research
Subjects
Ankle
Anxiety
Charcot-Marie-Tooth Disease - therapy
Compliance
HMSN (CHARCOT-MARIE-TOOTH)
Humans
Lower Extremity
Neuromuscular
NEUROPATHY
Orthopedic apparatus
Orthotic Devices
Patient Acuity
Patients
Questionnaires
Shoes
Statistical analysis
Wheelchairs
NEUROMUSCULAR
HMSN (CHARCOT-MARIE-TOOTH)
NEUROPATHY
Online AccessGet full text
ISSN0022-3050
1468-330X
1468-330X
DOI10.1136/jnnp-2023-332422

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Abstract 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.
AbstractList Shoe 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. We 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. We 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. The 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.
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.
Shoe 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.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.We 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.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.We 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.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.The 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.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.
Author Montesano, Maria
Gentile, Luca
Tramacere, Irene
Pazzaglia, Costanza
Mazzeo, Anna
Nuzzo, Sara
Falzone, Yuri Matteo
Oggiano, Francesca
Grandis, Marina
Previtali, Stefano Carlo
Occhipinti, Giuseppe
Allegri, Isabella
Padua, Luca
Vita, Giuseppe
Valentino, Paola
Longo, Maria
Ferraro, Francesco
Santoro, Lucio
Quattrone, Andrea
Schirinzi, Giulia
Prada, Valeria
Calabrese, Daniela
Scarlato, Marina
Schenone, Angelo
Cavalca, Eleonora
Pisciotta, Chiara
Spina, Emanuele
Manganelli, Fiore
Tozza, Stefano
Barone, Stefania
Iabichella, Giacomo
Cavallaro, Tiziana
Saveri, Paola
Gemelli, Chiara
Russo, Massimo
Pareyson, Davide
Zuccarino, Riccardo
Tagliapietra, Matteo
Bertini, Alessandro
Fabrizi, Gian Maria
AuthorAffiliation 2 Dipartimento di Neuroscienze, Scienze Riproduttive ed Odontostomatologiche, Università Federico II di Napoli , Napoli , Italy
5 IRCCS Ospedale Policlinico San Martino, Genova , Genova , Italy
16 Struttura Complessa di Riabilitazione Neuromotoria ASST Mantova Presidio di Bozzolo , Mantova , Italy
8 Università Cattolica del Sacro Cuore , Rome , Italy
7 Dipartimento di Neurologia , Azienda Ospedaliera di Parma , Parma , Italy
12 Dipartimento di Scienze Mediche, Università Magna Grecia , Catanzaro , Italy
14 Fondazione Italiana Sclerosi Multipla , Genova , Italy
15 Centro Clinico NeMO Trento, Fondazione Serena , Trento , Italy
9 Fondazione Policlinico Universitario A. Gemelli IRCCS , Rome , Italy
3 Dipartimento di Neuroscienze, Biomedicina e Movimento, Università di Verona , Verona , Italy
4 Dipartimento di Neuroscienze, Riabilitazione, Oftalmologia, Genetica e Scienze materno-infantili, Università di Genova , Genova , Italy
1 Unità di Malattie Neurologiche Rare, Dipartimento di Neuroscienze Clinic
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BackLink https://www.ncbi.nlm.nih.gov/pubmed/37918904$$D View this record in MEDLINE/PubMed
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CitedBy_id crossref_primary_10_1136_pn_2023_003825
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ContentType Journal Article
Contributor Calabrese, Daniela
Montesano, Maria
Occhipinti, Giuseppe
Scarlato, Marina
Nuzzo, Sara
Spina, Emanuele
Longo, Maria
Barone, Stefania
Iabichella, Giacomo
Oggiano, Francesca
Gemelli, Chiara
Schirinzi, Giulia
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  fullname: Barone, Stefania
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Snippet BackgroundShoe inserts, orthopaedic shoes, ankle-foot orthoses (AFOs) are important devices in Charcot-Marie-Tooth disease (CMT) management, but data about...
Shoe inserts, orthopaedic shoes, ankle-foot orthoses (AFOs) are important devices in Charcot-Marie-Tooth disease (CMT) management, but data about use, benefits...
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StartPage 434
SubjectTerms Ankle
Anxiety
Charcot-Marie-Tooth Disease - therapy
Compliance
HMSN (CHARCOT-MARIE-TOOTH)
Humans
Lower Extremity
Neuromuscular
NEUROPATHY
Orthopedic apparatus
Orthotic Devices
Patient Acuity
Patients
Questionnaires
Shoes
Statistical analysis
Wheelchairs
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Title Use, tolerability, benefits and side effects of orthotic devices in Charcot-Marie-Tooth disease
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