Psychosocial impact of Von Hippel-Lindau disease: levels and sources of distress

Autor: R. B. van der Luijt, Neil K. Aaronson, Nicoline Hoogerbrugge, Danielle Majoor-Krakauer, Rolf H. Sijmons, E. B. Gomez Garcia, A. M. W. Van Den Ouweland, Frederik J. Hes, S. Verhoef, Chad M. Gundy, C. R. M. Lammens, Charlotte J. Dommering, E. M. A. Bleiker, Margreet G. E. M. Ausems, T. A. M. van Os
Přispěvatelé: Klinische Genetica, Genetica & Celbiologie, RS: GROW - School for Oncology and Reproduction, Faculty of Economic and Social Sciences and Solvay Business School, International Relations and Mobility, Clinical sciences, Medical Genetics, Human Genetics, Human genetics, Other Research, Clinical Genetics, Internal Medicine, Guided Treatment in Optimal Selected Cancer Patients (GUTS), Klinische Psychologie (Psychologie, FMG), Faculteit der Geneeskunde
Rok vydání: 2010
Předmět:
Adult
Male
Pediatrics
medicine.medical_specialty
PERCEPTIONS
von Hippel-Lindau Disease
Genetics and epigenetic pathways of disease [NCMLS 6]
SF-36
distress psychosocial impact quality of life Von Hippel Lindau disease worries hereditary breast-cancer colorectal-cancer psychological distress health survey risk family perceptions patient history sf-36
Disease
urologic and male genital diseases
PATIENT
COLORECTAL-CANCER
Molecular epidemiology [NCEBP 1]
Social support
HEREDITARY BREAST-CANCER
Quality of life
SDG 3 - Good Health and Well-being
Surveys and Questionnaires
HISTORY
Medicine
Humans
genetics
Genetics(clinical)
First-degree relatives
Von Hippel–Lindau disease
PSYCHOLOGICAL DISTRESS
Genetics (clinical)
Lindau disease
RISK
psychosocial impact
Hereditary cancer and cancer-related syndromes [ONCOL 1]
business.industry
distress
Social Support
Von Hippel
HEALTH SURVEY
worries
medicine.disease
FAMILY
Distress
Logistic Models
Quality of Life
Female
business
Psychosocial
Zdroj: Clinical Genetics, 77(5), 483-491
Clinical Genetics, 77(5), 483-491. Wiley
Clinical Genetics, 77, 483-91
Clinical genetics, 77(5), 483-491. Wiley-Blackwell
Lammens, C R M, Bleiker, E M A, Verhoef, S, Hes, F J, Ausems, M G E M, Majoor-Krakauer, D, Sijmons, RH, van der Luijt, R B, van den Ouweland, A M W, Van Os, T, Hoogerbrugge, N, Garcia, E B G, Dommering, C J, Gundy, C & Aaronson, N K 2010, ' Psychosocial impact of Von Hippel-Lindau disease: levels and sources of distress ', Clinical Genetics, vol. 77, no. 5, pp. 483-491 . https://doi.org/10.1111/j.1399-0004.2009.01333.x
Clinical Genetics, 77(5), 483-491. Wiley-Blackwell
Clinical Genetics, 77(5), 483-491. Wiley-Blackwell Publishing Ltd
Clinical Genetics, 77, 5, pp. 483-91
ISSN: 1399-0004
0009-9163
DOI: 10.1111/j.1399-0004.2009.01333.x
Popis: Contains fulltext : 89552.pdf (Publisher’s version ) (Closed access) Von Hippel-Lindau disease (VHL) is a hereditary tumor susceptibility syndrome, characterized by an increased risk of developing multiple benign and malignant tumors at various sites and ages with limited preventive options. This study evaluates the prevalence of distress among VHL family members and factors associated significantly with such distress. Forty-eight families with a VHL mutation were identified via the nine family cancer clinics in the Netherlands. In total, 171 family members (carriers, 50% at-risk, non-carriers) were approached, of whom 123 (72%) completed a self-report questionnaire. Approximately 40% of the VHL family members reported clinically relevant levels of distress, approaching 50% among the carriers and, possibly even more striking, 36% among the non-carriers. Having lost a first degree relative due to VHL during adolescence (OR 11.2; 95% CI 1.4-86.9) was related significantly to heightened levels of distress. Approximately, only one-third of those who reported heightened levels of distress had received professional psychosocial support. A substantial percentage of family members experience clinically relevant levels of distress. We would recommend the introduction of a procedure for screening for distress in this vulnerable population. Special attention should be paid to those individuals who have lost a close relative due to VHL during adolescence. 01 mei 2010
Databáze: OpenAIRE
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