Psoriasis is a skin condition in which skin cells reproduce too quickly causing red, flaky, crusty patches of skin covered with silvery scales (National Institute of Health (NIH) 2011). Gillard & Finlay (2005) reported that depending on its severity and the surface area of skin affected it can form into one of three classifications. Psoriasis that presents on 2% of the surface area of the skin is classified as a mild form; 3-10% indicates moderate and in severe cases more than 10% of the skin is affected (Young, 2005). Skin itching and burning is common and in severe cases the condition can be life-threatening (Camisa, 2004).
According to the National Cancer Institute (NCI, 2011), psoriasis is one of the most common chronic inflammatory diseases of the skin. It affects 125million people worldwide (National Psoriasis Foundation, 2011) and 1.5 million people in the UK and Ireland (Psoriasis Association, 2010).
The British Association of Dermatology (BAD, 2003) updated their 1996 guidance document for the management of patients suffering with psoriasis to reflect new evidence and clinical developments. This guidance covers a wide range of aspects such as clinical features of psoriasis, treatments, initial presentation, referrals and most important, quality of life. Although this section of the document is brief, it effectively introduces the nurse to the dermatology life quality index (DLQI) (Appendix, -1) which is a clear method of assessment regarding the patients’ quality of life and is also an effective measure of identifying the psychological aspects of this long-term condition that individuals may encounter.
A document published by the Department of Health (DoH, 2004) reviewed the quality of care for people with long-term conditions and categorised psoriasis as being one of them. The DoH recommended a focus on patient needs and the prevention of further complications by enforcing quality care within the community. The aim of this policy is to reduce the demand for emergency care and hospital admissions in order to provide patients with suitable and personal service in times of need (DoH, 2004). This has both positive and negative aspects because although it condenses the need for National Health Service (NHS) input, it also presents the patient with added stress, as treatment for psoriasis can be very demanding, time consuming, costly and messy within the household environment (Hughes & Onselen, 2003).
The DoH (2008) commissioned the Lord Darzi report ‘High Quality Care for All’ focusing on improving ‘the patient’s entire experience of the NHS and ensuring they are treated with compassion, dignity and respect in a clean, safe and well-managed environment’. This focus is supported by Mitchell and Penzer (2007) who state that each individual suffering from psoriasis will be affected differently and respond according to severity including psychological aspects and depending on lifestyle, therefore nursing staff have to be mindful when implementing support and care involving personal and individual needs.
Nursing staff are able to facilitate patients with psoriasis by assisting them with its daily management (Jackson, 2002). This can be achieved by setting goals and treatment regimens, including detailed demonstrations (Smith & Barker, 2006) and providing support and empathy through effective communication skills and education (Alexander et al, 2006). Care must be delivered concurrent with the most up to date evidence and best practice (Nursing Midwifery Council (NMC), 2008). Finzi et al (2007) research study suggests that dermatology nurses do not have adequate skills to detect the psychological effects of having psoriasis and in the majority of cases; referrals are not made to the appropriate members of the disciplinary team. In keeping with the guidelines offered by the NMC (2008), clinical information and any healthcare products given to patients must be provided based on evidence, therefore more emphasis regarding psoriasis education is needed for future development of nursing practice.
1.2 REASON FOR SELECTING TOPIC
Interest in this topic initially arose as two members of my family suffer from psoriasis. Also it will be beneficial to future practice as so many of the public suffer from the condition. Further exploration of the clinical evidence will provide a clearer understanding of the condition and the psychological burdens psoriasis patients have to encounter on a daily basis.
1.3 LITERATURE SEARCH
A thorough review of current literature was essential so that a balanced argument could be gained and to do this an extensive search of journals accessed through Manchester Metropolitan University Athens search engine was carried out. Journals included within the search were British Nursing Index (BNI), Cochrane Library, Cumulative Index to Nursing and Allied Health literature (CINAHL), Internurse, NHS evidence, Science Direct, OVID and WILEY. The keywords used to define the search terms included; inflammatory skin disease, dermatology, psoriasis, skin and psychological. This gave over 7192 hits therefore to gain greater focus the search was further condensed by limiting the geographical area to UK only. As the focus of the degree is UK based, the nursing practices and implications are UK based and the experience of the author and patient is culturally bound. Where there was a disparity in the study data then sources outside the UK were consulted in an effort to close the research gap. A concerted effort was made to exclude literature which was published prior to the 2001 era because academic work is based on references and therefore precedent. Work was considered to be included that was necessary; because there was a gap in this under researched area it may have been necessary for contextualisation. This produced 110 articles in total which were overwhelmingly dealing with treatment and biologics rather than the subject in question. Although vast amounts of literature were available, only 22 articles were directly relevant to psoriasis with regards to its psychological aspects.
In addition to the above research methods, ethical, nursing practice and psychology books were obtained from MMU library and a visit to The Manchester Skin Care Dermatology Clinical Assessment and Treatment Service (CATS) was carried out. This enabled me to speak to key informants and experts in the field to contextualise my experience, undertake exploratory overt ethnographical research and embed my knowledge in practice and experience. Public sector sources such as Royal College of Nursing (RCN) and National Institute for Clinical Excellence (NICE) were utilised, from Government sources the author consulted related health care literature and finally the Nursing and Midwifery Council (NMC) to ensure the author adhered to codes of conduct set for the profession.
1.4 THE AIM OF THIS DISSERTATION
The aim of this dissertation is to explore the key psychological effects of psoriasis on the patient and the implications of nursing care.
In order to do this, appropriate evidence will explore the different forms of psoriasis and treatments which may be possible and then secondly how it affects the person’s lifestyle by incorporating research evidence, evidence from journals, reports and books. Systematic reviews aim to identify and evaluate all available research evidence relating to a particular objective. Finally the literature will be utilised to show how it can be applied to practice by exploring the evolving nurses’ role and aspects to improve care.
The information will be presented in chapters in order to provide structure and keep evidence tight. Chapter one will define the different forms of psoriasis and will outline the treatments available. Chapter two will provide a review which explores evidence related to psoriasis in respect to quality of life, self concept, social stigma, employment, relationships and impact on partners and relatives. Chapter three will evaluate the literature in regards to its application and implication for practice. Subsequent recommendations and meaningful conclusions will finally be drawn from the above.
2.1 PSORIASIS DEFINED
In order for nurses to understand psoriasis, they must have knowledge of the condition and the way it can affect the patient. As the focus of this research is upon the impact of psychological effect of this chronic condition, the literature will therefore only outline and describe its pathogenesis, types, general approaches to treatment, first an exploration of the literature reveals how psoriasis is defined.
Ghoreschi et al (2003) explains psoriasis is a chronic inflammatory skin condition that results in a rapidly excelled reproduction of skin cells known as keratinocytes. In healthy skin the cells reproduce and are inconspicuously shed over a cycle of 28 days in a process known as proliferation. In psoriatic skin proliferation is reduced to a 4 day cycle as keratinocytes develop more rapidly gathering at the skin surface, resulting in loose scaling of skin (Hughes & Onselen, 2003).
Patricia & Witman (2001) reveal psoriasis presents on the skin in many different forms, but chronic plaque psoriasis is the most common affecting 90% of suffers; comprised of erythematous plaques with dry white scales commonly sighted on elbows, lower back and knees. Scalp psoriasis affects only the scalp, presenting as dry plaque lesions, a form common in 50% of patient but in severe cases, can also cause short-term hair loss (Graham-Brown & Burns, 2007).
Kownacki, (2002) indicates following a throat infection, guttate psoriasis usually appears which consists of small red circular papules and displays on the trunk.
Flexural psoriasis consists of red smooth plaques within skin folds, but as Langley et al (2005) reports, it appears differently to other forms of psoriasis and does not present silvery scales, it is frequently mistaken out in practice for fungal infection.
Localized psoriasis is most common in female smokers, occurring on the soles of feet and in the palms presenting as inflamed sterile yellow pustules (Griffiths & Barker, 2007).
Hughes & Onselen, (2003) highlight there is a generalized pustular psoriasis which is a rapidly developing acute form that affects the whole body and is an indicator for electrolyte and fluid imbalance. Although psoriasis presents in many forms ranging from mild to severe, even the mildest form is unsightly, embarrassing and unpleasant to cope with on a daily basis (Kownacki, 2002) therefore psychological aspects need to be addressed.
2.2 PSORIASIS TREATMENTS
Psoriasis is a condition which at present has no cure however there are multiple treatments available on prescription, referral and over the counter to manage and relieve symptoms and pain, and in successful cases can also offer periods of remission (Patricia & Witman, 2001).
There are numerous topical therapies available for treatment of psoriasis published within the British National Formulary (British Medical Journal, 2010) such as emollients, salicylic acid, corticosteroids, tar, anthralin, vitamin D analogues and retinoids. These can be used alone or in combination with other medication dependant on individual need. It is also advisable to take a daily bath in warm water and oils before applying emollients and is paramount that emollients are applied generously in order to be effective (Patricia & Witman, 2001).
According to Smith and Barker (2006), phototherapy is a treatment option for widespread psoriasis that exposes the skin to ultraviolet B (UVB) light, but the time in which is spent under the UVB lamp is dependent on severity of psoriasis and on individual need. This treatment can potentially be dangerous if left under the UVB lamp for long periods of time therefore patients are supervised throughout treatment by specialist trained UVB nurses and protective eye wear and protection for genitalia is provided. Menter & Griffiths (2007) warn although this treatment can be effective, it can be very time consuming as it entails treatment up to three times weekly.
Oral medication such as methotrexate, acitretin, ciclosporin and hydroxycarbamide are also effective in managing psoriasis as they decrease skin cell production, but as with all medication there is risk of side effects which could have an effect on the patient perceptions of the effectiveness of the treatment (Mitchell & Kennedy, 2006).
Biologics is a more recent therapy that is given through injection or via a drip designed to act on excessively active cells within the body. It is mainly prescribed for severe psoriasis and appears to be a safe long-term treatment (Castelo-Soccio & Van Voorhees, 2009). NICE (2009) issued guidelines on prescribing five biological treatments for psoriasis but since, due to clinical evidence, only four are now available on prescription because efalizumab has been suspended due to connection with fatal brain infection.
It is important to ensure the patient is aware that treatment will not cure psoriasis but will enhance quality of life, as high expectations can lead to disappointment and failure to comply with future treatment if unsuccessful (Kownacki, 2002).
3.1 QUALITY OF LIFE
Quality of life has numerous definitions and meanings that can alter according to personality and lifestyle; however Fallowfield (2009) puts this simply as involving not only the physical, but appears to include the functional, social and certainly the emotional well-being of an individual which Krueger et al (2001) had earlier claimed had major impact on patients who suffer with psoriasis.
Krueger et al (2001) wanted to establish this impact on patients’ quality of life, therefore undertook a research study which involved a questionnaire sent out to all 40350 members of the National Psoriasis Foundation and in severe cases of psoriasis, a telephone survey was also carried out. It was therefore quantitative research used to measure similarities because its method of gathering data can be applied to other settings (Burns and Grove, 2007).
The sample size selected was therefore meant to represent the population of psoriasis sufferers as indicated by Parahoo (2006) because having a large sample size is thought to decrease sampling errors (Burns and Groove, 2005). As in all research, there is a moral principle of allowing individuals to decide if they wished to participate without being coerced known as autonomy according to Beauchamp and Childress (2009). This was evident as the findings from the questionnaire had only a 43% response rate which is poor according to Polit and Beck (2006) because a minimum of fifty percent respondents is essential to prevent response bias which clearly is important when attempting to consider the generalisability of the results.
According to Macnee and McCabe (2008,) the discussion of the findings should flow not only from the review of the literature explored but the findings from data collected. The findings revealed according to Krueger et al (2001) that the majority of patients suffered from itching, scaling and redness to the skin with more than 10% of their body affected. Out of the 6194 individuals who completed the telephone survey, 79% reported that psoriasis had a major impact on their quality of life, 40% felt therapies were ineffective and 32% who were unhappy with current treatment regimes. The results of the study showed that psoriasis not only effected patients emotionally, socially, impacting on their quality of life, but it also emphasised ineffective treatment and therapies contributed to psychological distress and therefore highlighted the need for nursing input, pharmacological involvement and patient education in future practice. Young (2005) suspected there was a need for nursing intervention but nurses needed to be made aware of the psychological effects related to this long-term condition. Fortunately, a much larger study took place by the National Psoriasis Foundation (2009) which confirmed this.
Over a period of six years, the National Psoriasis Foundation (2009) undertook a longitudinal research study as they wanted to find out what the psycho-social impact psoriasis had on patients. Results from the study confirmed this was high because 59% of patients’ revealed it as having a huge impact on their quality of life and a further 17% reporting that their lives were drastically affected by the disease. It showed therefore that psoriasis not only effects patients emotionally and socially and has a huge impact on their quality of life, but it also discovered that ineffective treatment and therapies contributed to psychological distress. This according to Bhosle, (2006) highlighted the need for nursing input; pharmacological involvement and patient education in future practice.
A much earlier seminal research study by Kurwa & Finlay (1994) looked at quality of life from an in-patient perspective at the University Hospital of Wales (UHW). Although the study is dated, it still has relevance to practice because it continues to be cited in many current journal articles. The study involved 230 patients who on admission, completed a dermatology life quality index questionnaire consisting of ten questions and asked to repeat this four weeks after discharge. Out of the 230 patients admitted, 181 successfully completed both questionnaires, of which 132 patients felt that hospital admission and management largely improved their quality of life. The results from the study highlighted that hospital admission improved symptoms and feelings and overall management of psoriasis, therefore again emphasising the need for nursing intervention and education to improve the management of the psychological effects of this long-term condition (Fouere et al, 2005).
3.2 SELF CONCEPT
Hayes (2000) suggests that self concept is a person’s individual perception which is based on physical appearance, social personality, capability, feelings and self belief. Carl Rogers in (1961) developed the model of self concept, believing self image, ideal self and self esteem all to be its components of arguing that positive response from others and self-actualization are both essential in regards to an individual psychological need (Hayes, 2000).
Cash & Pruzinsky (2004) report because of the nature of psoriasis and the lack of education within the public sector, psoriasis is often looked upon as an infectious disease. Owing to this reaction and negative attention, individuals suffering from psoriasis often “feel contaminated or dirty” (Koo & Yeung, 2004 p.335) which even forces them to question their own judgement and self beliefs.
Further research by Cornish & Kleinstein (2007) identified the effect physical appearance has on self concept, establishing that patients were embarrassed by the appearance of their psoriasis and would only wear clothing that covered the effected skin, as well as disguising blood stains and flakes of skin that may become visible to the public. Bhosle et al (2006) suggest as body image has a major psychological impact on psoriasis patients therefore, it is the responsibility of the nurse to provide effective treatment regimes and adequate psychological support in order to achieve quality of life.
Literature revealed by Feldman et al (2005) also highlights the negative impact of the public towards psoriasis suffers and how isolation can affect patients’ feelings, self-esteem and self consciousness. Although we each have our own identity and personality, social influence has a major impact on one’s self concept (Hayes, 2000).
Goethals (1986) believes that self concept was built on social comparisons, however it is the effect of social rejection, insult, embarrassment, and impaired self- esteem from the public that has had a negative impact on social concept and is extensively reported in patients with psoriasis (Magin et al, 2008). This indicates the need for social support, public education and psychological intervention within this long-term condition (Picardi et al, 2005).
3.3 SOCIAL STIGMA
Griffiths & Richards (2001) claimed that although it had been recognised that there were high levels of social stigma with psoriasis sufferers, it had not been studied in-depth however some studies had highlighted the importance of psychological measuring tools and the need for effective nursing intervention in order to manage stigmatization within this long-term condition.
Later, Vardy et al (2002) studied the role of stigmatization in psoriasis and the impact and severity of it on quality of life with the aim of identifying if psoriasis patients suffered higher levels of stigmatization and to understand their quality of life when compared to other forms of skin conditions. The study consisted of 200 subjects, 100 patients who had psoriasis and the remaining 100 with other dermatology conditions. All involved were given two questionnaires, experience of stigmatization (EOS) questionnaire and a quality of life (QOL) questionnaire. The QOL survey method is an accepted form of qualitative measurement implemented by the sector across multiple areas of the discipline. In summary the QOL survey is a multi-dimensional qualitative research construct which evaluates the subject’s perception of their perspective upon their physical, emotional and social well-being on the dimensions of satisfaction (cognitive) and their happiness (emotional) levels (Campbell et al, 1976). Although somewhat dated this means of assessment has been used to provide meaningful assessment and subsequent data and has not been superseded in terms of its consistent use in assessing these dimensions and is utilised throughout various aspects of research in the nursing field throughout Europe and beyond. A structural equation modelling (SEM) method was used to examine the relationship between EOS and QOL. This approach is a multivariate statistical method and is utilised to investigate casual relations between two variables and is predominantly qualitative in nature (Pearl, 2000).
Results from the study reported a considerably high level of stigmatization within psoriasis patients than those with other skin conditions, which also outlined a decreased level of quality of life. Although the study highlighted excessive levels of stigma, it also found that the QOL questionnaire alone does not include “physical, psychological, social and environmental aspects” (Vardy et al, 2002 p.741) of psoriasis.
In conclusion the study identified the need to implement the EOS questionnaire in future practice as an effective tool of psychological assessment as the QOL alone is ineffective. It also outlined the importance of nurse intervention and education with regards to stigma and psychological effects of psoriasis for future nursing practice.
This is similar to the views of Richards et al (2004) who reported although nurses now were aware of social stigma and the psychological burdens of psoriasis and the effect it has on patient’s treatments, referrals to the appropriate members of the multidisciplinary team were not being made and in over half of their patients psychological effects were being ignored.
Lee’s (2010) work demonstrates the need for communication and trust between the nurse and patient, and how nurses should be further educated to deal with all aspects of psoriasis in order to gain maximum support for this long-term condition.
In order to achieve this, there are measuring tools available as a guideline for nursing staff because in 1989, stigmata was identified with the use of a “questionnaire on experience with skin complaints (QES)” (Lee, 2010 p.22). The aim was to identify six key areas of stigma with those who had psoriasis in order to diagnose psychological distress (Ginsburg & Link, 1989). More recently Janowski & Pietrzak (2008) presented a tool to assist nurses in recognising the need for referral regards to stigma and psychological intervention within psoriasis. This tool is comprised of seven varied guidelines including anxiety, psychological stress, quality of life, symptoms, treatments, children and stigmatisation, all of which are important in identifying psychological distress within psoriasis sufferers. Although this tool does not focus on stigma alone, it covers a wide aspect of psychological need and is an effective indicator for nurses in practice (Lee, 2010).
“The skin is the largest organ of the human body and the most visible”
(Saunders & Edwards 2004 p.33)
Due to the appearance of psoriasis, relationships can be instantly affected and generate feelings of embarrassment and avoidance of social contact (Inanir et al, 2006). The effects of psoriasis can also hinder intimacy and can become very uncomfortable and upsetting for both people in the relationship. Saunders & Edwards (2004) report treatments can become messy; flakes of skin become visible due to shedding, and broken skin can cause blood stains to clothing and bed sheets. Patients suffering with a severe form of psoriasis can also be affected in the genital area, causing intimacy to be a painful and an uncomfortable experience, often initiating lack of interest which may lead to conflict within a long-term relationship (Lewis-Jones, 2000). Price (2001) highlights conflict can also arise because symptoms of psoriasis often cause suspicion within relationships as inflamed areas of skin and discharge are similar to the symptoms of infection and sexually transmitted diseases.
Young (2005) research, studied 502 patients to establish what were the psychological and social problems they faced when suffering moderate to severe psoriasis, revealing it had a huge impact on relationships and intimacy because 49% avoided any physical contact with others, 30% were embarrassed and uncomfortable with handshaking and 38% of them identified themselves as having issues with intimacy. The figures also suggested that intimacy problems are more prominent between the age of 18 to 24 and in those who were single.
Intimacy is a very personal issue and needs to be addressed in the correct manner in order to avoid embarrassment for the patient. Nursing staff are bound to an ethical and legal obligation to respect confidentiality and autonomy at all times (Jonsen et al, 2006) in order to safeguard patient’s health and wellbeing (NMC, 2008). Nursing assessment allows opportunity to identify any physical or psychological need, including intimacy issues, in order to provide the appropriate support for the patient (Harrison, 2001).
3.5 IMPACT ON PARTNERS AND RELATIVES
Psoriasis being a severe chronic condition not only concerns the patient therefore but can have major psychological implications for partners and relatives, as well as significantly affecting their quality of life (Feldman et al, 2005).
To determine if this was true, Basra & Finlay (2007) undertook a study at the UHW to determine the impact psoriasis had on family members and partners. Ethical approval was obtained and consent and confidentiality was addressed prior to the research ensuring the study conformed to ethical principles especially ensuring participants safety (Swinton, 2009). The study consisted of fifty relatives of patients who regularly attended the outpatient clinic at the hospital. It was a qualitative research approach and a convenience sample, which is readily found, recruited and convenient (LoBiondo-Wood & Haber, 2006), was undertaken to establish their concerns in regards to living with a patient suffering with psoriasis. This involved detailed semi-structured interviews which were analysed to highlight the main concerns of relatives and partners in regards to quality of life. Fifty nine areas of concern were identified and condensed into eighteen categories.
The results revealed that 98% of relatives believed that their own quality of life was greatly affected by the psychological aspect of psoriasis and felt it caused them emotional distress, 54% of family members claimed they felt a burden of care due to the responsibility and extensive treatment regimes needed by their loved one. Housework load was also a major concern as 42% reported an increase in housework causing added strain within the family unit; 48% felt their social life and interaction with others restricted; 46% of families claimed holidays had to be selected in consideration of the patient’s skin condition and for some; holidays were nonexistent due to embarrassment and the severity of the patient’s condition. Finical difficulty was also established and how the burden of care effects employment. The study also identified that caring for a family member with psoriasis affected physical well-being, sleeping patterns and even compromised family choice of food.
Overall the strengths of this research study reveal it to be reliable as the results are applicable to other patient’s relatives elsewhere and credible because the researchers did check the findings with the participants known as member check (Hek and Moule, 2006).
As the study recognised that psoriasis not only affected the patient concerned but had major physical and psychological implications for relatives and partners involved, it is important that nurses are aware of the effects psoriasis imposes on family member’s quality of life. Smith & Baker (2006) reinforce the view that it is important therefore to provide psychological support and if needed, appropriate care packages.
A similar study involving a qualitative research approach by Eghlileb & Finlay (2007) explored the impact on the lives of family members by using the Psoriasis Area and Severity Index (PASI), the DLQI and the Psoriasis Disability Index (PDI) (Appendix 3). Relatives had the option to attend an interview or to complete a postal questionnaire.
There were 63 subjects in total, involving 28 being relatives and 35 who were patient’s partners, revealing 30 who chose to complete the postal questionnaire and 33 who attended the interview. The results were almost identical to Basra & Finlay’s (2007) study and as it contained a large sample size, taken from a larger geographical area, it showed reliability and validity because the respondents appeared to have shown their perception and experiences openly (Macnee and McCabe, 2008); had used consistent protocols, and had left a clear audit trail (Polit and Beck, 2006).
Both studies have provided evidence that psoriasis not only effect’s the individual involved but also disrupts the family unit. It is clear that treatment and management of psoriasis can be intense; Young (2005) therefore suggests that it is vital for nursing staff to insure support, advice, education and care offered to family members as well as the patient in question. The NMC (2008) code of professional conduct was put in place to provide a required standard of care fo