title: Illness Perception in Primary Cutaneous T-cell Lymphomas: What Patients Believe About Their Disease.
abstract: There is currently no information available on illness perception in primary cutaneous T-cell lymphomas (CTCL). The aim of this study was therefore to gather initial information on disease understanding and interpretation in patients with CTCL. Consecutive patients from a hospital-based primary cutaneous lymphoma ward completed the Revised Illness Perception Questionnaire (IPQ-R) on 2 consecutive visits. A total of 24 patients with different variants of CTCL were included in the study. Patients experienced their condition as being long-lasting, but not fundamentally affecting their lives. Patients had poor belief in personal control, but strong belief in treatment control. They did not show a good understanding of their disease, and had a moderately negative emotional response to their illness. In conclusion, the IPQ-R provides a feasible and reproducible tool for measurement and better understanding of illness perception in patients with CTCL. Knowledge of patients' attitudes towards their disease should enable optimization of the patient-physician relationship and patient care.
authors.affiliation: Department of Dermatology and Venereology, Karl Landsteiner University of Health Sciences, 3100 St. Poelten, Austria. johanna.eder@stpoelten.lknoe.at.
authors.forename: Johanna
authors.initials: J
authors.lastname: Eder
authors.forename: Martina
authors.initials: M
authors.lastname: Kammerstätter
authors.forename: Friedrich
authors.initials: F
authors.lastname: Erhart
authors.forename: Daniela
authors.initials: D
authors.lastname: Mairhofer-Muri
authors.forename: Franz
authors.initials: F
authors.lastname: Trautinger
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D032882:Comprehension; D017281:Cost of Illness; D004644:Emotions; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D016410:Lymphoma, T-Cell, Cutaneous / Q000175:diagnosis / Q000523:psychology* / Q000628:therapy; D008297:Male; D008875:Middle Aged; D009367:Neoplasm Staging; D010353:Patient Education as Topic; D010465:Perception; D011788:Quality of Life; D012878:Skin Neoplasms / Q000175:diagnosis / Q000523:psychology* / Q000628:therapy; D011795:Surveys and Questionnaires