Representações sociais de pacientes e familiares sobre neurofibromatose tipo 1

Cerello, Alessandra Craig; Gianordoli-Nascimento, Ingrid Faria; Moreira, Alline Hellen; Rocha, Virgínia Silva; Ribeiro, Luciana de Moura; Rezende, Nilton Alves de

doi:10.1590/s1413-81232013000800020

Cited by 2 publications

(1 citation statement)

References 19 publications

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“…31,32 Previous studies have shown that the clinical severity and social representations of NF1 are correlated with quality of life, as reported by NF1 patients and their families. 33,34 The importance of nutritional care in NF1 patients and their clinical features must be investigated further in future studies.…”

Section: Discussionmentioning

confidence: 99%

Body composition in adults with neurofibromatosis type 1

Souza

Jansen

Martins

et al. 2016

Rev. Assoc. Med. Bras.

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SUMMARY Objective To evaluate the body composition and nutritional status of neurofibromatosis type 1 (NF1) adult patients. Method A cross-sectional study of 60 NF1 patients (29 men, 31 women) aged ≥ 18 years who were evaluated from September 2012 to September 2013 in a Neurofibromatosis Outpatient Reference Center. Patients underwent nutritional assessment including measurements of weight, stature, waist circumference (WC), upper-arm circumference (UAC), and skinfolds (biceps, triceps, subscapular, suprailiac). Body mass index (BMI), upper-arm total area (UATA), upper-arm muscle area (UAMA), upper-arm fat area (UAFA), body fat percentage (BFP), fat mass, fat-free mass, fat mass index, and fat-free mass index were also calculated. Results The mean age of the study population was 34.48±10.33 years. The prevalence of short stature was 28.3%. Low weight was present in 10% of the sample and 31.7% of patients had a BMI ≥ 25 kg/m2. Reduced UAMA (<5th percentile) was present in 43.3% and no difference was found in UAFA between the sexes. The BFP was considered high in 30% and 17 (28.3%) patients had a WC above the World Health Organization cutoffs. Conclusion In this study, NF1 patients had a high prevalence of underweight, short stature, and reduced UAMA, with no difference between the sexes. Reduced UAMA was more prevalent in underweight patients; however, this was also observed in the normal and overweight patients. Further studies should investigate the distribution of body tissues in NF1 patients, including differences between men and women, and the influence of diet and nutrition on clinical features in NF1.

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Section: Discussionmentioning

confidence: 99%

Body composition in adults with neurofibromatosis type 1

Souza

Jansen

Martins

et al. 2016

Rev. Assoc. Med. Bras.

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Quality of Life in Adults with Neurofibromatosis 1 in Brazil

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Avó

et al. 2016

Journal of Genetic Counseling

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Neurofibromatosis type 1 (NF1) is a neurocutaneous genetic disorder that can be associated with severe complications, and it may shorten patients' lifespan and affect their quality of life negatively. This study aimed to examine quality of life constructs among adults with NF1 in Brazil. It is an exploratory, descriptive and cross-sectional study consisting of two stages, involving thirteen adult patients with NF1. The first stage was developed using a quantitative methodology, namely the WHOQOL-100 questionnaire; responses for the 13 patients were compared to a matched control group. The second stage comprised clinical-qualitative research whereby participants took part in a semi-structured interview; these data were analyzed using the categorical thematic analysis technique. There were no statistically significant differences in the questionnaire domains between the NF1 patients and the control subjects. Eighteen main themes were extracted from the interviews, showing interference of the NF1 visibility principally in psychological aspects and social relationships. Patients mentioned curiosity about NF1 and confusion about the distinctions between NF1 and contagious diseases, which lead to prejudice. They were concerned about the future and how the disease would develop in themselves and their offspring, and emphasized difficulties acquiring proper healthcare. These findings may help in planning healthcare for Brazilian NF1 patients and improving their quality of life.

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Representações sociais de pacientes e familiares sobre neurofibromatose tipo 1

Cited by 2 publications

References 19 publications

Body composition in adults with neurofibromatosis type 1

Body composition in adults with neurofibromatosis type 1

Quality of Life in Adults with Neurofibromatosis 1 in Brazil

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