Psychometric Properties of the MICRA Questionnaire in Portuguese Individuals Carrying SDHx Mutations
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Psychometric Properties of the MICRA Questionnaire in Portuguese Individuals Carrying SDHx Mutations Raquel Gomes Martins 1,2,3,4
&
Irene Palmares Carvalho 1,5
# American Association for Cancer Education 2019
Abstract This study aims to present the translation and cultural adaptation, as well as the psychometric characteristics of the Portuguese version of the Multidimensional Impact of Cancer Risk Assessment (MICRA) questionnaire in individuals with SDHx mutations. The questionnaire was translated and culturally adapted in accordance with the process recommended by the World Health Organization. As per suggestion of the authors of the original instrument, a joint, universal European and Brazilian Portuguese version of the MICRA was created. Ninety-six (asymptomatic or affected) patients with SDHx mutations nationwide completed the adapted version of the MICRA in Portugal. Analyses consisted of confirmatory factor analysis, reliability estimation (alphas), and correlations with two other distress and quality of life instruments. The Portuguese adaptation of the MICRA was understandable to patients from various socioeconomic backgrounds. All items and factor structure of the original version were retained, yielding a good model fit. The MICRA’s three subscales and total score showed good internal consistency, and the correlations found between the Portuguese version of the MICRA and the other instruments assessing similar constructs further supported its validity. The adapted version of the MICRA showed good psychometric properties with a representative population of SDHx mutation carriers. This instrument can now be used to study the multidimensional impact of taking a genetic test for these mutations. It can also be used in future studies with other Portuguese populations of patients submitted to genetic tests for cancer risk assessment. Keywords Pheochromocytoma . Paraganglioma . Genetic testing . Assessment . Psychometrics
Introduction Recent advances in medicine have made it possible to identify an increasing number of neoplasms triggered by hereditary
* Raquel Gomes Martins [email protected] 1
Medical Psychology Unit, Department of Clinical Neurosciences and Mental Health, School of Medicine, University of Oporto, Oporto, Portugal
2
Department of Endocrinology, Portuguese Oncology Institute of Coimbra, Coimbra, Portugal
3
Research Centre, Portuguese Oncology Institute of Oporto, Oporto, Portugal
4
Departamento de Neurociências Clínicas e Saúde Mental / Unidade de Psicologia Médica, Faculdade de Medicina da Universidade do Porto, Al. Prof. Hernâni Monteiro, 4200-319 Porto, Portugal
5
CINTESIS, School of Medicine, University of Oporto, Oporto, Portugal
genetic alterations. Whenever a germline mutation is identified in a patient, the relatives who are at risk of having inherited the same genetic alteration are prompted to take the genetic test. If the result is positive, the individuals are followed for the rest of their lives. This procedure ensures early diagnosis and treatment of the d
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