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.

Health-related Quality of Life in Cutaneous Lymphomas: Past, Present and Future

“…Perceiving personal control (over the disease) is associated with better adherence to therapeutic regimens in patients with hypertension (56). Therefore, confidence in managing one's disease might help to improve adherence to treatment by supporting patients' self-control (38). However, the self-administered CTCL-specific questionnaire by Bisaccia et al (27) comprised unique items within its psychological domain compared with Skindex-29.…”

“…The clinical relevance of the relationships between illness perception and HRQoL in CTCL and CBCL were investigated recently (37). The Revised Illness Perception Questionnaire has been shown to assess illness perception reproducibly in CTCL (38). Illness perception reflects patients' individual concepts of understanding and interpretation of the disease (39)(40)(41).…”

The clinical and humanistic burden of cutaneous T-cell lymphomas and response to conventional and novel therapies: results of a systematic review

“…After, further 189 citations were excluded based on the full-text review, 9 publications were eligible for inclusion. Hand-searching identified an additional 6 relevant publications, resulting in 15 publications which met the predefined inclusion criteria for the HRQoL review [17][18][19]21,22,[37][38][39][40][41][42][43][44][45][46].…”

“…One study reporting on patients' perspective of their disease was identified [44]. The Revised Illness Perception Questionnaire (IPQ-R) was used to evaluate 22 patients with different variants of CTCL on two consecutive visits to a hospital-based primary cutaneous lymphoma ward [44].…”

Influence of demographic and clinical characteristics of actinic keratosis patients on illness perceptions and readiness to increase sun protection behaviours: an exploratory study

“…diabetes, rheumatoid arthritis) and skin (e.g. psoriasis, alopecia, polymorphic light eruption) conditions, but also to address the relationship between beliefs about illness and healthrelated outcomes in various skin diseases (18)(19)(20)(21)(22)(23). This questionnaire consists of three subscales: (i) illness identity scale, (ii) illness perception scales and (iii) causal attributions.…”