Psoriasis: snapshots of the unspoken: using novel methods to explore patients' personal models of psoriasis and the impact on well-being

• Published in: British journal of dermatology (1951) Vol. 171; no. 4; pp. 825 - 831
• Main Authors: Bundy, C., Borthwick, M., McAteer, H., Cordingley, L., Howells, L., Bristow, P., McBride, S.
• Format: Journal Article
• Language: English
• Published: Oxford Blackwell Publishing Ltd 01-10-2014; Wiley-Blackwell; Oxford University Press
• Subjects: Adaptation, Psychological; Anxiety - etiology; Attitude to Health; Biological and medical sciences; Cost of Illness; Dermatology; Emotions; Health Status; Humans; Interpersonal Relations; Medical sciences; Personal Satisfaction; Psoriasis; Psoriasis - psychology; Psoriasis. Parapsoriasis. Lichen; Self Concept; Self Report; Social interactions; Stress, Psychological - etiology; Human; Skin disease; Methodology; Psoriasis; Dermatology; Health; Well being; Patient; Models; Method; Quality of life
• ISSN: 0007-0963; 1365-2133
• DOI: 10.1111/bjd.13101

Summary
Background
People with psoriasis report high levels of undermanaged distress. This is compounded by the problem that some patients find it difficult to discuss their emotions. Distress prevents optimal self‐management, which may exacerbate psoriasis flares, thereby creating a vicious cycle.
Objectives
To offer people with psoriasis a novel way of expressing their personal models of psoriasis in order to gain a better understanding of their experiences of living with the condition.
Methods
We used a qualitative technique – asking people with psoriasis to complete a postcard entitled ‘Dear Psoriasis…’ – to collect survey data on their personal models of psoriasis.
Results
One hundred and four returned postcards provided new insights into the extent of and reasons for distress in psoriasis. Seven dominant themes emerged: identity and relationships; battleground; control; emotional consequences; hypervigilance; coping; treatment burden.
Conclusions
Reports of distress were common, and for many it was long‐standing. Some reported low self‐esteem and self‐denigration bordering on self‐loathing, and described being hypervigilant and in a constant battle with their skin. Many people did not expect to have intimate relationships, resulting in reduced social support for patients in the future. This research underscores the need for patient support and psychological treatment to be made available as part of routine care.
What's already known about this topic?
Psoriasis has a broad impact on people's lives, resulting in distress.
Many patients find it difficult to identify and express this distress verbally.
Distress is often under‐recognized and undermanaged by clinicians.
What does this study add?
We used a new method to capture peoples’ beliefs and feelings (personal models) about psoriasis.
New information shows the devastating impact psoriasis can have on self‐identify and esteem.