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Open Access 01-12-2022 | Malignant Hyperthermia | Research

Impact of a digital manual for guidance on malignant hyperthermia: patient education

Authors: Gislene Rodrigues, Pamela Vieira de Andrade, Joilson Moura dos Santos, José Luiz Gomes do Amaral, Helga Cristina Almeida da Silva

Published in: Orphanet Journal of Rare Diseases | Issue 1/2022

Abstract

Background

Malignant hyperthermia (MH) is a rare, hereditary disease with a hypermetabolic response to volatile anesthetics/succinylcholine. Susceptible patients face difficulties due to a lack of knowledge about MH. As informational materials could increase knowledge and adherence to prevention/therapy, digital information about rare diseases validated for patients is needed. Our objective was to evaluate the following: (1) the impact of digital manuals on the knowledge/quality of life of MH patients and (2) access to MH services.

Materials and methods

Fifty MH-susceptible patients filled out a virtual questionnaire twice (demographic/economic/clinical data, MH knowledge and impact on daily life, and SF-36 quality of life). Test groups 1 (n = 17) and 2 (n = 16) were evaluated 30 and 180 days after receiving a digital manual, and the control group (n = 17; without manual) was evaluated after 180 days. We collected the MH service data about the number of contacts.

Results

Twenty-four (48%) patients reported problems in personal/professional life, sports, clinical/surgical/dental treatments, and military service, in addition to concerns about emergency care and complaints of sequelae. The percentage of correct answers in the second MH knowledge questionnaire increased for test group 2 (62% vs. 74.1%; unpaired t test, p < 0.01), was significantly greater in test groups 1 (68.1%) and 2 (74.1%) than in the control group (56.5%; Kruskal–Wallis, p < 0.05), and correlated with more time studying the manual and reports of MH-related problems (multiple regression, p < 0.05).

Conclusions

The digital manual improved patients’ MH knowledge. Online contacts with the MH service increased, allowing greater information dissemination. As informational materials could increase knowledge/adherence to prevention/therapy, digital information about MH validated for patients should be implemented.

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Title: Impact of a digital manual for guidance on malignant hyperthermia: patient education
Authors: Gislene Rodrigues
Pamela Vieira de Andrade
Joilson Moura dos Santos
José Luiz Gomes do Amaral
Helga Cristina Almeida da Silva
Publication date: 01-12-2022
Publisher: BioMed Central
Keywords: Malignant Hyperthermia
Malignant Hyperthermia
Published in: Orphanet Journal of Rare Diseases / Issue 1/2022
Electronic ISSN: 1750-1172
DOI: https://doi.org/10.1186/s13023-022-02435-1

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Impact of a digital manual for guidance on malignant hyperthermia: patient education

Abstract

Background

Materials and methods

Results

Conclusions

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Abstract

Background

Materials and methods

Results

Conclusions

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