A principal source of advice, support and information on psoriasis and psoriatic arthritis
A registered charity no: 1118192
A registered charity no: 1118192
The Psychosocial Burden of Psoriasis
A review of current literature regarding how psoriasis affects mental functioning, social life, relationships and career
What is Psoriasis?
Psoriasis is a condition whereby the skin cell life cycle is shorter than average (21-28 days), at around seven days. The result of which is a build-up of immature skin cells on the surface layer of the skin. This layer appears red, flaky and scaly1. Psoriasis affects roughly 2-3% of the UK population2. It is a chronic (long-lasting) condition that varies in severity from person to person. It can subside for periods of time before it flares up again. Psoriasis is not a contagious condition and is not usually painful. However, it can sometimes cause itching.
What can be assumed?
As psoriasis is a visible condition, it understandably affects many areas of life. Media influence has ingrained an idea that a perfect appearance is the most important aspect of a person, and that any defect is an object of ridicule. Therefore, with a condition such as psoriasis, patients can feel angry, upset, regretful and socially stigmatised. Common-sense dictates that such a condition would also impact a patient’s social life, including sexual relationships, career, and participating in social activities.
Research has investigated the psychosocial impact of psoriasis, which refers to mental functioning, work life, and relationships, and social situations. Tools have been created to measure psoriasis impact on patient quality of life in a quantifiable manner. Tools also provide evidence to back up what can otherwise simply be seen as anecdotal evidence and common-sense conclusions.
Tools for measure
In the world of science, it is not enough to have simply a ‘hunch’ about what psychosocial effect psoriasis will lead to. There needs to be development of instruments that measure its impact. Such tools have to be developed and tested for their reliability and validity. Reliability refers to the tool producing the same result when tested on the same person more than once. To be valid, a tool must measure what it sets out to, and not accidentally be measuring any other factors. Tools for measuring psoriasis impact can be through the questionnaires or interviews. The tools therefore, if reliable and valid, can be used to measure psoriasis impact on patients worldwide and the findings can be quantitatively analysed and reported.
The Psoriasis Area and Severity Index (PASI) is a tool used to calculate how severe a person’s psoriasis is. The head, arms, trunk and legs are scored individually, and the four scored combine to give the final PASI score. If less than 10% of an area is involved, the grade scored is ‘1’. Percentages then increase in intervals of 20 (10-29%, 30-49 %...), with the grades increasing by one each time3. Psoriasis is then further classified into one of three categories; Mild (less than 3% of body affected), moderate (3-10% of body affected), and Severe (more than 10% of body affected) 4. Using these classification groups allows for clinicians and researchers to have a basis for classifying psoriasis that all understand and use, and that always leads to a person being put into the same category no matter who diagnosis and classifies their psoriasis.
In order to assess how psoriasis affects quality of life, such tools have been developed that look physical aspects of life e.g. getting up and getting dressed, work life, mental health, and social life. These measures, whether in interview or questionnaire format, will ask questions that require an answer from a choice of available answers, or to pick a number on a scale. For example, the Dermatology Life Quality Index (DLQI) includes the question ‘Over the last week, how much has your skin affected any social or leisure activities?’ The patient can then answer either ‘very much’, ‘a lot’, ‘a little’, ‘not at all’, ‘not relevant’. With data such as this collected from a large number of patients, analysis can be performed to find out which areas and by how much psoriasis affects. Studies can also be replicated using the same tools, therefore eradicating the possibility of researcher bias and allowing results to be directly compared against once another.
My focus in this report
This report will focus on four areas pertaining to the psychosocial burden of psoriasis, reporting on studies into each area.
Depression and self-harm and suicidal ideation
Depression, unfortunately, is a taboo subject in today’s society. No matter how hard charities and organisations try, there is still an idea that depressed people simply need to ‘cheer up’ or ‘get over it’. The word is often used very lightly whereby people confuse simply being upset for a few days over a failed exam as being depressed. With all the stigma and confusion surrounding depression, it is not surprising that it is hard to recognise and diagnose in people. Some people do not seek the help they need due to the social stigma. Symptoms of being depressed include; constant tiredness, a loss of interest in previously enjoyed activities, poor appetite, sleeping pattern and sex drive5. It seems logical to assume that a condition which affects the body’s physical appearance has an effect on the mind.
A study6 which surveyed 217 psoriasis patients (of which 138 were inpatients and 79 were outpatients) used the Carroll Rating Scale for Depression (CRSD). The CRSD is a 52 item scaled found to have high reliability and validity in screening for depression7. The items include statements where respondents answer ‘Yes’ or ‘No’ referring to areas such as sleep difficulties, hopelessness, appetite changes, and suicide ideation. A score greater than 10 is used to screen for clinical depression presence6. Compared to the other dermatology groups studies (acne patients, alopecia [hair loss], and atopic dermatitis [a type of eczema]), psoriasis inpatients with 52% (plus or minus 23.4%) of their skin affected had the highest depression scores. There was a 7.2% prevalence of suicide ideation, that is the respondent had answered ‘Yes’ to the item ‘I have been thinking about trying to kill myself’, among inpatients with psoriasis. This percentage decreased to 5.5% when the psoriasis outpatient scores where combined with the inpatient scores. However, the percentage for prevalence of suicide ideation in psoriasis patients is higher than that of any other the other dermatology groups examined in this study.
A review paper, which looks at the results by many studies that investigate the same area, found that there is a range between 10% and 62% for reported rates of depression amongst psoriasis patients8. The review cites a finding by Schmitt and Ford9 that out of 265 psoriasis patients, 32% of them screened positive for depression. The PASI has been found to be an unreliable predictor of risk for depression8, and therefore it is important to screen psoriasis patients no matter how their psoriasis ranks on the PASI.
Physicians have found that factors associated with anxiety are those that relate to quality of life (QOL), and QOL is often a stronger predictor of psychiatric morbidity than severity of psoriasis10. The coping methods of focusing on emotion by venting feelings and avoiding situations that induce feelings of anxiousness may in fact cause anxiety themselves11. Anxiety scores correlate with areas of visible psoriasis plaques12, however a correlation does not imply causation, and it is unclear here whether psoriasis flares are causing anxiety, anxiety is causing psoriasis to flare, or whether both occur. Depression has been linked to psoriasis in a study using the Beck Depression Inventory (BDI), where a score of less than 9 indicates lack of depression, 10-17 mild to moderate and greater than 18 severe. The higher the score on the BDI, the greater the risk the patient had of their psoriasis flaring up.
Self-harm can occur in many ways, and not just those that are deliberate such as using sharp objects to make cuts to the body. Drugs such as alcohol and cigarettes are culturally well known to act as both rewards and commiserations for events and feelings. In those faced with the challenges of a psoriasis diagnosis cigarettes and alcohol can be perceived as stress relievers. However, smoking and alcohol consumption have been found to have negative effects related to psoriasis13, 14.
A study13 looking at women with psoriasis found smoking to be associated with psoriasis, and alcohol to be a factor that worsened existing psoriasis. Therefore, these methods that are an attempt to cope with psoriasis can lead to psoriasis and greater psoriasis severity. Smith and Fenske14 found alcohol exacerbated psoriasis. Young and middle-aged men with psoriasis were found to drink on average twice the amount of alcohol per week that non-psoriasis patients did, prior to the onset of their psoriasis13. In a study10 of 95 psoriasis patients, 20% were found to have a problem with alcohol as defined by CAGE-have you ever ‘cut down’, been ‘annoyed’ with criticism of your drinking, felt ‘guilty’ about drinking or had an ‘eye-opener?’ Alcohol as a coping mechanism is further shown to be destructive by Vincenti and Blunden16 who found that alcohol had an adverse affect on psoriasis treatment outcomes, particularly in males. There is also an increase risk of death secondary to alcohol consumption in psoriasis patients13.
Education (with a focus on bullying in schools)
School years are often filled with self-consciousness, trying to fit in with the popular crowd, a desire to appear ‘cool’ and to form relationships. It is therefore understandable that a visual condition of the skin is going to be a target for bullies. It is common knowledge that bullies tend to target individuals who possess a feature or quality that is different from the norm. As psoriasis is a rare condition and its appearance is visually unappealing, it seems logical to conclude that children with psoriasis are subject to teasing and/or bullying by their classmates.
An Australian study15 used interviews to discover the experience with bullying of patients with skin disorders. Twenty-nine of the interviewed patients had a diagnosis of psoriasis. The age range of the participants in the entire study was 13-73. Teasing was found to be common, and incidences where teasing was so hurtful it led to psychological problems, this incidence was experienced in childhood or adolescence. The data from patients was then analysed thematically. Common themes that emerged were the negative nature of the teasing, teasing acting as an instrument to socially exclude, and teasing as a means of establishing power. Psoriasis patients expressed that a lot of the teasing come from the misconception that psoriasis is contagious. One female patient spoke of how insensitive the teasing was whereby people would outright ask what she had on her elbows or tell her they found her psoriasis revolting.
In patient stories of living with their psoriasis, many young people have expressed that they stopped doing P.E. and/or swimming due to being embarrassed about showing more of their body than usual, and being left out17.
As psoriasis has both physical and psychological impact, it is reasonable to assume that work life and opportunity are not free from its burden. Kruger et al18 found that 17% of psoriasis patients aged 17-54 reported they had experienced psychological effects in the workplace due to their disease. For those with severe psoriasis, 6% reported being discriminated against in their workplace18. Twenty-three percent of suffers in another study reported that their choice of career had been impact by their psoriasis20.
Psoriasis can cause such pain and discomfort that work days are missed, and often patients have appointments with medical professionals. Psoriasis was found to account for between 2.3-26 work days lost per year per patient19, 21.
For some, the burden stretches further to not being able to find employment. Fortune et al22 found a lower rate of employment in the UK for psoriasis patients compared to the general population21, 22. More than 50% of 369 patients with severe psoriasis were unemployed (with 26% retired). Thirty-four per cent of this group cited psoriasis as the reason they were not working.
Fleischer et al23 devised a hypothesis that the effect of psoriasis on work life might lead to a reduced socioeconomic status, which in turn makes obtaining psoriasis treatments difficult. A telephone survey by Kruger et al12 carried out in the US found that 42% of patients with severe psoriasis with an annual income of less than $30,000 (~£20,000) experienced financial distress due to their psoriasis.
Other social areas affected by Psoriasis
Due to psoriasis not looking visually appealing and its tendency to sometimes itch, many patients report having to change their daily routine24. Some have said they avoid certain social situations 25. Routines changed included bathing, dressing, rest, work, sleep, and intimacy. Over 26% of psoriasis patients reported having to change their daily routine regularly due to their condition. Forty percent of patients surveyed by the American National Psoriasis Foundation said that choosing comfortable clothing was the most difficult daily task that was influenced by psoriasis.
Ginsberg and Link26 found that 19% of their surveyed sample with mild to severe psoriasis had had a personal experience of social rejection. This included such incidences as being asked to leave the hairdressers, a gym, or a pool. Due to this, patients tended to avoid situations where this might occur, as they believe the social rejection might reoccur.
Studies looking at the impact of psoriasis on family life and relationships27, 28 found that there was increased pressure on family members of those with psoriasis. They felt they needed to spend extra time cleaning, had on occasion felt disruption to their own social life due to embarrassment/giving time to the psoriasis patient for care. Thirty-seven percent of surveyed family members reported deterioration in their relationship with the patient, with 8% reporting psoriasis had no effect on their relationship at all. Sampogna et al28 found that out of 936 psoriasis patients, 35.5 % had sexual impairment due to psoriasis e.g. feeling unattractive/sexual activity being too painful due to psoriasis in the groin area.
What needs to happen in the medical world?
The articles used to write the above sections unanimously claim that there needs to be more recognition by physicians of psoriasis as more than just a skin condition. It also needs to be recognised that psoriasis severity is not a reliable measure to indicate how the quality of life of an individual is affected. Very mild psoriasis can give a person as much or even more of a psychosocial burden than the burden someone with severe psoriasis suffers. Further research could continue to look at areas of life psoriasis affects, how so, and what can be done to lessen its adverse effects.
What can I do to help alleviate my psychosocial burden?
17 June 2013
About the author:
Tara Fletcher is a student studying BSc Psychology at the University of Hertfordshire. She has just completed a 120 hour second year placement at the Psoriasis and Psoriatic Arthritis Alliance (PAPAA). During her time at PAPAA she completed a paper on how psoriasis impacts psychological and social aspects of patient life.
Her previous interests include social and evolutionary psychology, with a particular interest on suppression of stereotypes and terror management. She also enjoys studying the importance of the doctor-patient relationship through shared decision-making.
Additionally she enjoys statistics, and hopes to use her interests in her future psychological career.