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CLINICAL REPORT
Patients’ Illness Perception as a Tool to Improve Individual Disease
Management in Primary Cutaneous Lymphomas
Stefanie PORKERT 1 , Eva LEHNER-BAUMGARTNER 1,2 , Julia VALENCAK 1 , Robert KNOBLER 1 , Elisabeth RIEDL 1 and Constanze
JONAK 1
Department of Dermatology, Medical University of Vienna, and 2 Department of Clinical Psychology, General Hospital of Vienna, Vienna, Austria
1
The Revised Illness Perception Questionnaire (IPQ-R)
has been shown to assess illness perception reproduci-
bly in primary cutaneous T-cell lymphomas (CTCL). Ill-
ness perception reflects patients’ individual concepts
of understanding and interpretation of the disease,
influencing illness behaviour and health-related qua-
lity of life (HRQOL). This study investigated the clinical
relevance of the relationships between illness percep-
tion, illness behaviour, and HRQOL in CTCL and cuta-
neous B-cell lymphomas (CBCL). A total of 92 patients
completed the IPQ-R, the Scale for the Assessment of
Illness Behavior (SAIB), and a skin-specific HRQOL
tool (Skindex-29). Data on illness behaviour were not
evidently related to illness perception, whereas illness
perception was significantly associated with HRQOL.
Both, IPQ-R and HRQOL results correlated with disease
entity, stage, and socio-demographics. Only IPQ-R re-
sults provided practical information on patients’ needs
to train personal coping strategies. IPQ-R assessment
in CTCL and CBCL might be a useful instrument to im-
prove individual disease management.
Key words: illness perception; HRQOL; illness behaviour; indi-
vidual disease management; coping strategies.
Accepted Oct 16, 2017; Epub ahead of print Oct 19, 2017
Acta Derm Venereol 2018; 98: 240–245.
Corr: Constanze Jonak, Department of Dermatology, Medical University
of Vienna, Waehringer Guertel 18–20, AT-1090 Vienna, Austria. E-mail:
[email protected]
L
eventhal’s Common Sense Model of Illness Cognition
proposes individual, mental concepts of perceiving
and responding towards one’s illness. Herein, cognitive
and emotional coping strategies are self-regulatory and
based on patients’ illness perception (1–3). Thus, illness
behaviour is the conceptual model for handling one’s state
of health as a patient perceives, evaluates, and acts upon
disease-related symptoms (4, 5).
Both illness perception and illness behaviour affect
personal disease management and health-related quality
of life (HRQOL) (6–8). In cancer patients, HRQOL is
influenced by the way patients perceive and respond to
their illness (9).
Consequently, we aimed to investigate the clinical value
of the conceptual relationships between illness percep-
tion, illness behaviour, and HRQOL in primary cutaneous
lymphomas (CLs). CLs are either of T-cell (CTCL) or B-
cell (CBCL) origin and mostly follow an indolent course
doi: 10.2340/00015555-2819
Acta Derm Venereol 2018; 98: 240–245
(e.g. CBCL or early-stage CTCL). However, prognosis is
poor in advanced-stage CTCL mycosis fungoides (MF)
and Sézary syndrome (SS) (10–13).
To date, HRQOL and illness perception, but not illness
behaviour, have been assessed in CLs demonstrating men-
tal burden due to this stigmatizing skin disorder (14–17).
Within our questionnaire-based study the HRQOL tool
Skindex-29, the revised Illness Perception Questionnaire
(IPQ-R), and the Scale for the Assessment of Illness Beha-
vior (SAIB) were jointly analysed. The aim of this study
was to evaluate, compare, and link HRQOL and patients’
perception and response to their illness i