Illness Perception in Primary Cutaneous T-cell Lymphomas: What Patients Believe About Their Disease

Acta Derm Venereol. 2016 Mar;96(3):381-5. doi: 10.2340/00015555-2245.


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.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adult
  • Aged
  • Aged, 80 and over
  • Comprehension
  • Cost of Illness
  • Emotions
  • Female
  • Health Knowledge, Attitudes, Practice*
  • Humans
  • Lymphoma, T-Cell, Cutaneous / diagnosis
  • Lymphoma, T-Cell, Cutaneous / psychology*
  • Lymphoma, T-Cell, Cutaneous / therapy
  • Male
  • Middle Aged
  • Neoplasm Staging
  • Patient Education as Topic
  • Perception*
  • Quality of Life
  • Skin Neoplasms / diagnosis
  • Skin Neoplasms / psychology*
  • Skin Neoplasms / therapy
  • Surveys and Questionnaires