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Exploring patients' perceptions of living with psoriasis in a London general practice

Nooriya Uddin[1] and Mary Howman[2], UCL Medical School, University College London

 

Abstract

Background

Psoriasis is a chronic debilitating skin condition affecting 2% of the population. Its impact extends beyond the physical and can lead to reduced quality of life. Most people with psoriasis are seen and managed in general practice; however there is limited literature exploring patients' views on their condition and the care they receive in primary care.


Aim

To explore patients' perceptions of psoriasis, their perceptions of how others view their condition and their experience of GP care.


Methods

Semi-structured interviews with eleven participants in a London general practice. Participants were eighteen years and above, with varying severity of psoriasis. Qualitative thematic analysis was used to assess the data collected.


Results

Self-consciousness, poor self-image, shame and embarrassment were commonly expressed. Participants had differing views as to why they had psoriasis and often felt negatively treated by others. They felt that care from GPs was often superficial and focused entirely on their physical management. Although they often viewed the GP's role as prescriber and referrer they did want more information on psoriasis from the GP. Some respondents appeared less affected by their psoriasis; they tended to be those who were actively involved in their management.


Conclusion

Some patients see a limited role for their GP in helping them deal with their psoriasis. Possible explanations for this, based on the data from this study, are that GPs may not explore the wider consequences of the illness on the patient and also that they do not always offer sufficient information on the condition or share management; issues which could be addressed in the consultation.

Keywords: Psoriasis, Primary Care, Consultation, Complementary Medicine.

 

Introduction

Psoriasis is a chronic immune mediated condition of the skin which affects approximately two percent of the population, with men and women being affected equally (Bhosle et al., 2006). It is characterised by erythematous lesions which can appear as grey or silvery-white dry scale (Langley et al., 2005). The lesions are commonly distributed on the scalp, elbows, knees, skin folds and lumbosacral regions. Patients can experience distressing itching, bleeding, noticeable flakes and attention-drawing physical appearance of their skin; in addition, approximately five percent have joint involvement (Fortune et al., 2005).

Although a disorder of the skin, psoriasis can have a detrimental effect not only on a patient's physical well-being, but also on their psychological and social well-being, leading to reduced quality of life. The common sequelae of psoriasis have been reported to include embarrassment, shame, impaired self-image and self-esteem, fear of being stigmatised by others and behavioural avoidance (Akay et al., 2002; Campbell et al., 1996). Moreover, the ideal of 'perfect skin' portrayed by today's media-driven society has been shown to leave patients feeling that their psoriasis-affected skin is incompatible with what is considered the 'norm' (Magin et al., 2009). In this way people with psoriasis may feel their outward appearance is unattractive, and feel defined and restricted by this as a reflection of self, resulting in low self-esteem (Magin et al., 2009).

Crucially, the way patients perceive their disease has been seen as a significant predictor of health outcomes in chronic skin conditions (Evers et al., 2005; Fortune et al., 1998). Patients who report the illness cognition of perceived helplessness towards their condition, generalising this to all aspects of daily life, experience greater distress physically and psychologically (Stanton, 2001).

As well as dealing with difficulties associated with poor self-image and self-esteem, patients are often left feeling concerned about how others will perceive their condition (Campbell et al., 1996; Bury, 1991). Patients experience feelings of stigma associated with their appearance (Fortune et al., 2005; Campbell et al., 1996) as they sometimes feel that they are being judged on the basis of their appearance alone. In addition to this, some people with psoriasis withdraw from social engagement because of embarrassment about their appearance (Janowski and Pietrzak, 2008; Fried et al., 1995).

There is growing evidence to suggest that there exists a mismatch in distress experienced by patients with psoriasis and their dermatologists' perception of this distress (Richards et al., 2004). This lack of communication is also reflected in the fact that although patients with psoriasis are increasingly turning to complementary and alternative medicine (CAM) (Ben-Arye et al., 2003; Jensen, 1990), as they are dissatisfied with conventional treatment, they often don't discuss this with their dermatologists. Magin's qualitative paper (2009) indicates that patients perceive that GPs and dermatologists have a poor understanding of the psychological implications of their psoriasis and can be insensitive to the impact it has on their functioning.

Previous studies have recruited patients primarily from dermatology clinics and hospital settings, selecting those who may be more severely affected. With the exception of the Australian studies carried out by Magin et al. (2006 and 2009), and one study carried out in the UK by Campbell et al. (1996), there is a paucity of qualitative studies carried out in the general practice setting or documenting patients' views of care received in general practice. The British study was carried out fifteen years ago in Manchester and did not recruit patients above the age of 65 years or specifically explore the use of CAM.

In summary, the literature highlights the impact of psoriasis on patients physically and psychologically, and that patients sometimes feel the impact of their psoriasis is not adequately appreciated by medical practitioners resulting in dissatisfaction with consultations. There appears to be a lack of communication, with patients not discussing the psychological impact of their condition or how they may be treating it using CAM. There is a lack of qualitative studies exploring patients' views on psoriasis and the care they receive in general practice in the UK.

This study therefore aimed to explore the views of patients with varying severity of psoriasis, with no upper age limit, in a London general practice setting. It aimed to explore how patients perceive their condition and how it is viewed by others; and to document their perception of care from their GPs and whether they have explored complementary and alternative medicine for their psoriasis.

 

Method

This was a qualitative study carried out in a London general practice of over 14,000 patients. Participants of 18 years and above with varying severity of psoriasis were identified. Excluded from the study were participants with severe mental illness. The search words Psoriasis, Active problem, Over 18 were entered on the EMIS GP practice database and this identified a total of 29 eligible participants. Eligible participants were subsequently approached by letter.

Semi-structured interviews lasting 30-40 minutes were undertaken, aiming to explore patients' views on their condition and its impact on their life; participants were also asked how they felt their psoriasis was perceived by others, its impact on family and friends, and their views on the care they received from their GPs, as well as their views on CAM (see Appendix 1). These areas were focused on as they were the areas where previous literature has suggested there may be a lack of congruence between GP and patient perception. A qualitative approach was used in order to be able to explore fully participants' attitudes and experiences.

The process of analysis began early, as advocated by Silverman (2000). The interview process implemented an iterative collection of data whereby subsequent interviews adapted to questioning styles which were more likely to elicit rich data.

The interviews were transcribed verbatim on to a Microsoft Word file, by the investigator (NU) and a short summary was written for each interview. The summaries of interviews which were produced early on in the data collection process were read back to participants (n=5) in a telephone conversation shortly after the interviews.

At the end of each interview audio tapes were listened to and transcripts read both individually and collectively as they became available; this assisted with familiarisation of data collected (Pope et al., 2000). The analytical process of this study was primarily based upon grounded theory approach (Glasser and Strauss, 1967). Preliminary steps of thematic analysis commenced with the use of different coloured highlighter pens to identify and code potential themes (Greenhalgh, 2006). Subsequently, re-analysis of the whole set of data took place, where closer attention was given through line-by-line coding of the data (Charmez, 2006) comparing each transcript throughout the process.

The ideas which developed in this process were shared with a second investigator (MH) who had the opportunity to look at copies of the transcripts. Following a thorough discussion, themes were agreed and findings were based on these, aiming to reflect both concordance between participants and those with differing experiences.

Morefield and Whittington Research Ethics Committee approved this study, reference number 10/H0721/9. Research and Development approval was provided by Camden PCT.

 

Results

A total of 29 participants were approached for this study. Thirteen agreed to be interviewed but two did not attend; time limitations meant no further interviews could be arranged. The final sample of participants comprised eleven patients aged 19 to 70 years (Male n=5, Female n=6), with varying severity of psoriasis. Their characteristics are summarised in Table 1. All names are pseudonyms.

Name Age Sex Ethnicity Age of Psoriasis Onset (years)
Tina 19 Female Asian 15
Rita 45 Female Indian 35
Jeff 64 Male British White 63
Eva 40 Female Polish 28
Doris 70 Female British White 69
Tom 43 Male British White 40
Rose 56 Female Irish 14
Mike 55 Male Scottish 30
Samantha 63 Female Irish 53
Rob 66 Male British White 15
Sunil 38 Male Indian 34


Table 1:
Details of participants in the study


The use of thematic analysis identified three major themes which reflect the initial objectives set – View of Condition; View of Others' Reactions to Psoriasis; View of Management. Within each major theme, several sub-themes emerged.

 

View of Condition

How It Started

Many views on the causes and precipitating factors of psoriasis were expressed. Stress was the most commonly reported aetiological and precipitating factor with participants describing marriage breakdown, noisy neighbours and overwork as reasons why they may have developed the condition. Several participants said doctors also attributed flare ups of their psoriasis to stress.

Some participants who had a family history of psoriasis made the assumption that their psoriasis must be hereditary.

I mean how can several members of your family have exactly the same complaint […] where did we all catch it from, why doesn't [sic] other people catch it directly off of you or anyone within your family that has got it. You know, it's got to be hereditary. (Rob)

Sunil mooted bacteria as a cause.

I've heard of […] people's ideas where it can be bacteria related, where if you pick up the wrong type of bacteria in the stomach it could start showing in your skin. (Sunil)

Potential precipitating factors included cold weather, hormones (pre-period) and dampness.

Most participants described more than one possible causal or precipitating factor for their condition. They tended to personalise these factors and describe how they fitted in to their individual life stories resulting in psoriasis becoming part of their life.

I was on a bicycle down a hill and there was a lorry coming out and I thought I was gonna go right under the lorry and I don't know how I turned the hand but I was fine, I was all right but I think I got terrible fright then, I got really shaken up but I don't know whether that could have started it off or not. (Rose)


Effects on the self

The diagnosis of psoriasis often resulted in an altered view of self. Participants reported that psoriasis was responsible for unsightly physical appearance, shame and embarrassment. There were repeated references to the word 'Leper', which they associated with having psoriasis. Although not overtly stated this perhaps reflects their feeling of being stigmatised and ostracised because of their appearance and also possibly feeds into their concern that others may feel psoriasis is contagious.

Those who had psoriasis on their face were particularly troubled by lack of self-esteem as they were unable to conceal their condition.

[…] and then when it started to show a lot I can remember that it did have quite a bit of an impact on me. (Tina)

I mean I'm lucky where I have it, it's on my legs now because it's on my thighs here it's on my legs on my hips and my back, I'm not looking at those parts so it doesn't worry me. (Samantha)

Contrary to this, however, Mike spoke of how although he only ever had a 'few small patches' of psoriasis, when he was a teenager it did make him self-conscious. Thus severity of psoriasis may not be the sole indicator of the impact it can have on an individual, in keeping with the findings of previous studies (Campbell et al., 1996)

Many participants who were diagnosed with psoriasis at a young age made references to how self-consciousness was a particular issue for them when they were younger. Despite the severity of psoriasis remaining the same, as they got older their psoriasis did not bother them as much as their priorities changed and they had more to focus on than their appearance.

The way I look at it there's worse things in life than having a rash on your face, you know because I am the age I am and we have four children, been through ups and downs and everything else, there's bigger things to worry about. But back then when you're that age [...] it's all about yourself at that age. Now I'm a lot wiser, but I still wouldn't fancy having it on my face and get flare ups but it wouldn't bother me as much as it did back then. (Rose)

However, Rita, Sunil and Doris, ranging from ages 38 to 70 years old, all had late onset of psoriasis, yet they experienced altered self-image and self-consciousness, so being older with more life-experience is not protective for all. It may be that length of time of having psoriasis is also a key factor on the impact it has.

 

View of others' reactions to psoriasis

Confrontation and contagion

A recurring theme in the interviews was that when psoriasis was visible to others, for example if it was on the face, hands or arms, patients were often stared at, which sometimes led to confrontational behaviour. Perhaps fear of this may be behind the social withdrawal described previously.

I've clamped [hit] a couple of people, when they keep on, oh yeah I've clamped a couple of people few years ago. (Rob)

[…] people did look you know, actually I was over Asdas one day and this woman kept looking at me and I said what you looking at, and I suppose the way I spoke she just looked the other way, I said 'you won't catch nothing' you know […] people do look at you different.(Doris)

A particular concern was that participants perceived that others viewed their condition as being 'contagious' despite this not being the case.

I think maybe they're frightened they are gonna catch something. (Doris)

People who don't have it tend to be very ignorant about it, or want to be ignorant about it, and stay as far away as possible from it, because it's not pleasant.(Sunil)

I suppose make people aware of it, anyone with any kind of rash you know, they're not going around with some terrible disease you know that spread and things like that […] It's bad enough coping with that but then for people to look at you, you know as if you had some terrible disease, that's even worse.(Rose)

Many supported the idea that greater public awareness about psoriasis was needed in order to rectify this misperception and inform public opinion.


Self censure

While it was a common finding that participants reported strangers saw their condition as being contagious, most felt that this was not the case for friends and family who knew they had psoriasis. Despite this, participants did not generally engage in speaking about the impact of their condition to friends or family as they did not want to be perceived in a negative light and had anxieties that it reflected a sign of weakness. The three participants of South Asian background were particularly reticent about talking about their condition to others for this reason.

I mean I didn't talk about it because I didn't think it was, well I thought if I talked about how I felt I'd probably be told to get over yourself, you know my mother had bigger issues to deal with.(Rose)

 

View of management

Self help

The use of complementary and alternative medicine (CAM) was an area which was explored in this study. Tina's dissatisfaction with conventional medicine led her to manage her psoriasis using CAM.

As well as using the treatments such as acupuncture and herbs I've also been given other things for me to do i.e. follow a certain diet, don't eat certain food, sleep at a certain time […] I feel like I'm more in control of my condition because I'm actually doing something to take part in the treatment as opposed to just taking the steroids or just taking the drugs or whatever. (Tina)

Although all other participants reported that CAM was frequently recommended to them by family and friends, no other participants used CAM for managing their psoriasis: a recurring reason for this was the belief that there was no evidence to suggest its effectiveness.

[…] we ended up paying about hundred and twenty pounds for this damn course […] it stank the whole house out and it was complete nonsense. And anyone who suggests that I would tell them it's a load of Bu****** really, it's a load of crap, yeah, I don't think it had any effect. (Sunil)

Don't trust it, wouldn't trust it cos you don't know what you're taking you don't know […] I'd rather, no…I just couldn't trust it, cos it's not tried and tested or anything like that. (Rose)

Not that I'm anti-alternative medications, but I want to see the proof, proving it actually works before taking.(Mike)

Some participants described feeling more in control of their illness through adopting a more active role in its management; for example doing their own research on the internet or self-management through dietary modifications and avoidance of perceived triggers. Having an accepting attitude towards their condition also benefited them, as if their psoriasis flared up they were able to manage it without it affecting their functioning, as Rose and Samantha described:

Since I've learnt to deal with it, if it flares up it flares up […] if it flares up now I just keep it well moisturised.(Rose)

I wasn't staying at home thinking oh my God I have this, I have that, what am I going to do, there was no point in worrying about it, which there isn't, I mean I don't want to have a negative side, I have to be positive.(Samantha)

Other participants such as Rita were much less positive about their psoriasis, describing it as a "punishment" to be endured which had a big effect on their functioning. She was visited in her home for the interview and said she spent her days in bed watching television, with no involvement in social activities.


Perceived role of the GP

When exploring perceptions of the care received from GPs, most participants reported that GPs did not provide adequate information on the condition itself, its aetiology and prognosis.

I cried a lot because I have a lot of problem and I told why I'm like this? I have no cure? When it would cure? Like that. I cried, then immediately she referred me to psychiatry. (Rita)

Tina spoke of how she felt when her initial diagnosis was made by her GP: he provided no information on the condition itself or how it would be managed but simply referred her.

Some participants also reported that their GP did not ask about the impact of psoriasis on their life. Interestingly, however, most participants in this study said they were not interested in having their GPs explore how psoriasis may be affecting them. Rose said that speaking to the doctor about the emotional impact of her condition would have little benefit to her, perhaps in keeping with her description of her psoriasis as a "punishment" to be accepted. Rob explained that his GP know him "well enough" to know that he did not feel the need to talk to her about the impact of his psoriasis.

A recurrent finding was that patients' perception of good care from their general practitioner involved immediate referrals and symptom relief.

I mean what can they do anyway, what can the GP do if I said oh god you know it's really affecting my life I can't wear the nice red dress […] what can they do? [...]. there's nothing, there's nothing, I mean the only thing I was glad for is I was referred to the specialist. (Rose)

Take away the redness and the soreness so I wouldn't scratch it that was all I was worried about.(Samantha)

However, as described above, they were keen for more information about the condition when diagnosed rather than simply being referred.

 

Discussion

Summary of findings

Psoriasis was often associated with poor self-image and increased self-consciousness, in both male and female participants. Those who had the diagnosis from a young age reported that the impact of psoriasis had decreased with increasing age. Nonetheless, participants who had late onset of psoriasis reported significant impact, irrespective of their age. Participants each had explanations unique to their own life experiences to explain why they had developed psoriasis.

The findings also highlighted a possible lack of public awareness about skin conditions, which patients felt contributed to the incorrect belief that psoriasis is contagious and often led to their perceived negative treatment. While participants were keen for others to know more about the condition, participants themselves did not engage in speaking about the impact of their condition to friends or family as they did not want to be perceived in a negative light.

When exploring perceptions of the care received from GPs, most participants reported that their GP did not ask about the impact of psoriasis on their life. In addition, it was also frequently stressed that GPs did not provide adequate information on the condition. While participants placed importance on effective treatment and prompt referrals, they also wanted GPs to empower them by sharing explanations. Findings suggested that people with psoriasis benefited from understanding and being actively involved in the management of their condition, perhaps as they felt they had better control over it. In contrast, those such as Rita who appeared to feel she had no control over her illness or its effect on her, seemed more adversely affected by it.

The majority of participants felt that although complementary and alternative medicine had been suggested to them by friends or family, they did not use it as they felt there was no evidence to suggest its effectiveness.


Comparison with existing literature

The psychological sequelae of psoriasis in this study were largely in accord with previous research in this area which reports embarrassment, shame, impaired self-image and self-esteem (Magin et al., 2009; Russo et al., 2004; Wahl, 2002; Akay et al., 2002; Campbell et al., 1996). Patient beliefs on the aetiology of psoriasis have previously been identified, with stress and genetic susceptibility appearing most frequently (Fortune et al., 1998; Nevitt and Hutchinson, 1996). This study also suggested that participants often had more than one theory for what they believed to be the cause of their psoriasis. They also tended to describe these in terms of their own life experiences, for example stress potentially brought on by a bicycle accident.

It has been suggested that the impact of psoriasis on patients may decrease with increasing age. Some studies have shown that people under the age of 45 years may experience greater psychological problems than older people (Gupta and Gupta, 1996; Ginsburg and Link, 1989). However, participants in this study who were diagnosed with psoriasis at a later stage in their life reported significant distress and encountered altered self-image and self-consciousness, despite being older. This suggests that length of illness may also be a factor when considering the impact of psoriasis on a patient, though other studies have not supported this finding.

In keeping with the existing British paper (Campbell et al., 1996), GPs did not generally ask patients about the wider psycho-social impact of their psoriasis. This may have been because they did not recognise its wider effects on the patient or that they did but chose not to explore this further. However, biomedical considerations such as appropriate diagnosis, symptom relief and prompt referrals were regarded as top priority by patients and this may also reflect the finding by Magin (2009) that some patients felt the psychological implications of their skin condition was not part of the doctor's remit. Patients reported being provided little or no information regarding the nature of the condition and so did not feel empowered with regard to its management.

There are a number of studies suggesting that patients with psoriasis are increasingly seeking complementary and alternative medication (CAM) due to dissatisfaction with conventional management (Ben-Arye et al., 2003; Berg and Arnetz, 1998). However, most participants in this study expressed that they perceived CAM as lacking evidence for its effectiveness and thus would not try it.


Strengths and limitations

This qualitative study provides important insights into individual experiences and attitudes towards living with psoriasis. By recruiting participants from general practice it enabled an exploration of patients' views of the care they receive from their general practitioners, adding to sparse literature in this setting in the UK. Some interviews were also conducted in patients' homes which allowed participation from patients who may have otherwise been reluctant to travel to the GP surgery. Furthermore, conducting interviews with a medical student rather than a doctor as the interviewer may have allowed patients to talk more freely about their condition in an environment which was safe for them.

One limitation of this study is that the initial recruitment letter was sent out in English so those with difficulty reading or speaking English may well have found this a barrier to participation. There also appeared to be minimal participation from younger patients in this study. Also there may well have been selection bias in that those volunteering to participate did so because they had particularly strong feelings about their psoriasis or its management. The sampling was of people engaging with their GP about their psoriasis so it did not reflect the views of those who were not seeking help for their condition. It was also a single centre study and so the findings may not be generalisable to patients in other centres.


Implications for clinical practice and future research

This study suggests that some patients see a limited role for their GP in helping them deal with their psoriasis. Possible explanations for this based on the data from this study are that the GP may not explore the wider consequences of the illness on the patient and also that they do not always offer sufficient information on the condition or share management; issues which could be addressed in the consultation.

In order to explore this further, a larger qualitative study recruiting patients from a variety of areas could be considered. Strategic sampling of patients from different socio-economic, ethnic and cultural backgrounds could be performed to try to capture as many different experiences as possible. A qualitative exploration of GPs' experiences of looking after patients with psoriasis would also highlight whether GPs' views are divergent from patients' and how this may influence the care that patients receive. One possibility is that GPs may assume patients are gaining information and support from other sources such as the internet or their dermatologist. Further elucidation of this issue would help inform and improve consultations about psoriasis.

 

Conclusion

The potential of the GP consultation around psoriasis perhaps needs to be maximised as some patients currently see the GP's role in their psoriasis management as limited.

Patients have varied health beliefs around the aetiology of psoriasis which need to be explored along with the impact of the condition on their psycho-social wellbeing, irrespective of age or severity. Patients are keen for more information regarding their condition and to be involved in the management process; by empowering patients in this way they may be able to have greater understanding and control of their condition.

 


 

List of Tables

Table 1: Details of participants in the study.

 

Appendix 1

Topic guide outline

Patients' perception of their condition
  • When were you diagnosed with psoriasis?
  • What do you think has caused your condition?
  • Why did it start when it did?
  • What are the chief problems your condition has caused you?
Patients' perception of how others view their condition
  • Who knows about your condition?
  • What are the effects of your condition on others around you?
  • Do you think that people have behaved differently towards you since your diagnosis?
Patients' experience of the care they have received from their GP for their psoriasis
  • When did you last see your GP about your psoriasis?
  • At any point in the consultation did your GP ask you about how your psoriasis is affecting your life?
  • Is there anything in particular the GP could have done in the consultation that you wanted him/her to do?
  • Have you ever sought or considered complimentary medicine as part of your treatment plan? If so can you tell me what your reasons were or would be?

 

Notes

[1] Nooriya has an intercalated BSc in Primary Health Care from UCL. She is currently a final year medical student at King's College and she is hoping to pursue a career in Public Health in the near future.

[2] Mary is a GP and clinical teaching fellow in the department of primary care and population health at UCL. She is studying for a masters in medical education and hopes to continue a career combining clinical work and teaching.

 

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To cite this paper please use the following details: Uddin, N. and Howman, M. (2011), 'Exploring patients' perceptions of living with psoriasis in a London general practice', Reinvention: a Journal of Undergraduate Research, Volume 4, Issue 2, http://www.warwick.ac.uk/go/reinventionjournal/archive/volume4issue2/uddinhowman Date accessed [insert date]. If you cite this article or use it in any teaching or other related activities please let us know by e-mailing us at Reinventionjournal at warwick dot ac dot uk.