Influence of learning disabilities on the tumour predisposition syndrome NF1--survey from adult patients' perspective
Standard
Influence of learning disabilities on the tumour predisposition syndrome NF1--survey from adult patients' perspective. / Granström, Sofia; Friedrich, Reinhard E; Langenbruch, Anna Katharina; Augustin, Matthias; Mautner, Viktor-Felix.
In: ANTICANCER RES, Vol. 34, No. 7, 01.07.2014, p. 3675-81.Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review
Harvard
APA
Vancouver
Bibtex
}
RIS
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 -