Influence of learning disabilities on the tumour predisposition syndrome NF1--survey from adult patients' perspective.

Autor:	Granström S; Department of Neurology, Hamburg, Germany s.granstroem@uke.de., Friedrich RE; Neurofibromatosis Laboratory, Hamburg, Germany Oral and Cranio-Maxillofacial Surgery, Institute for Health Services Research in Dermatology and Nursing, University Medical Center Hamburg-Eppendorf, Hamburg, Germany., Langenbruch AK; German Center for Health Services Research in Dermatology (CVderm), Institute for Health Services Research in Dermatology and Nursing, University Medical Center Hamburg-Eppendorf, Hamburg, Germany., Augustin M; German Center for Health Services Research in Dermatology (CVderm), Institute for Health Services Research in Dermatology and Nursing, University Medical Center Hamburg-Eppendorf, Hamburg, Germany., Mautner VF; Department of Neurology, Hamburg, Germany.
Jazyk:	angličtina
Zdroj:	Anticancer research [Anticancer Res] 2014 Jul; Vol. 34 (7), pp. 3675-81.
Abstrakt:	Aim: To analyze psychosocial burdens associated with neurofibromatosis type-1 (NF1) phenotype--visible symptoms, medical complications, learning disabilities (LD)--from patients' perspective with focus on LD. Patients and Methods: A survey of 228 adult patients with NF1 was carried-out. Symptoms to estimate disease severity and visibility, and learning disability were assessed. Outcome parameters were social situation and psychosocial aspects. Results: Social situation and psychosocial aspects differed depending on NF1 phenotype. Patients with LD (n=55) were less frequently in a partnership (p=0.005) or had children (p=0.015) than those without (n=132). They also reported a higher frequency of depression (p=0.019) and sensitivity to stress (p<0.001) and more uncertainty regarding NF1-associated symptoms. These differences were significant when adjusting for disease severity and self-perceived disease visibility. Conclusion: Beside the psychosocial needs of patients with LD with NF1, medical management of this sub-group should include doctor-patient communication in easy language to compensate for patients' lack of knowledge about symptoms associated with cancer. (Copyright© 2014 International Institute of Anticancer Research (Dr. John G. Delinassios), All rights reserved.)
Databáze:	MEDLINE
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