Sofia Granström1, Reinhard E Friedrich2, Anna Katharina Langenbruch3, Matthias Augustin3, Victor-Felix Mautner4. 1. Department of Neurology, Hamburg, Germany s.granstroem@uke.de. 2. 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. 3. 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. 4. Department of Neurology, Hamburg, Germany.
Abstract
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
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