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

TY - JOUR

T1 - Influence of learning disabilities on the tumour predisposition syndrome NF1--survey from adult patients' perspective

AU - Granström, Sofia

AU - Friedrich, Reinhard E

AU - Langenbruch, Anna Katharina

AU - Augustin, Matthias

AU - Mautner, Viktor-Felix

N1 - Copyright© 2014 International Institute of Anticancer Research (Dr. John G. Delinassios), All rights reserved.

PY - 2014/7/1

Y1 - 2014/7/1

N2 - 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.

AB - 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.

KW - Adolescent

KW - Adult

KW - Aged

KW - Cross-Sectional Studies

KW - Female

KW - Humans

KW - Learning Disorders

KW - Male

KW - Middle Aged

KW - Neurofibromatosis 1

KW - Psychology

KW - Self Report

KW - Young Adult

M3 - SCORING: Journal article

C2 - 24982386

VL - 34

SP - 3675

EP - 3681

JO - ANTICANCER RES

JF - ANTICANCER RES

SN - 0250-7005

IS - 7

ER -