Patient suspected susceptibility to malignant hyperthermia: impact of the disease

Rodrigues, Gislene; Andrade, Pâmela Vieira de; Santos, João Paulo Fernandes; Castro, Isac de; Amaral, José Luiz Gomes do; Silva, Helga Cristina Almeida da

doi:10.1016/j.bjane.2021.10.021

Cited by 2 publications

(2 citation statements)

References 14 publications

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“…The questionnaire applied at the first time consisted of (a) demographic/clinical data; (b) economic classification into eight categories according to decreasing consumption patterns/potentials (A1/A2/B1/B2/C1/C2/D/E) [ 25 ]; (c) questions about problems related to MH (personal/professional life, military service, sports, medical/dental care, others) and changes in family relationships and lifestyle; (d) 10 questions about MH (10 points for each correct question); and (e) the SF-36 quality of life questionnaire (zero represents the worst situation and 100 represents the best one) [ 26 ]. The text of the complete questionnaire is available as supplementary material in a previous article by our group [ 27 ]. The questionnaire applied the second time consisted of the same previous items: (c) questions about problems related to MH and changes in family relationships and lifestyle, (d) 10 questions about MH, and (e) the SF-36 quality of life questionnaire.…”

Section: Methodsmentioning

confidence: 99%

“…The questionnaire to assess MH knowledge was developed in our center by two physicians and a nurse with experience in MH and presented good acceptance with a 60% overall rate of correct answers in a previous survey [ 27 ]. There were two open-ended questions (questions 1 and 10) and eight yes/no or multiple choice questions, as follows: (1) What are the signs of an MH crisis?…”

Section: Methodsmentioning

confidence: 99%

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

Rodrigues

Andrade

Santos

et al. 2022

Orphanet J Rare Dis

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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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Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%