A psoriasis patient experience of a nurse-led phototherapy service in a Dublin hospital

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1 A psoriasis patient experience of a nurse-led phototherapy service in a Dublin hospital Carmel Blake, Kelly Impey, Michelle Greenwood, Gabrielle McKee, Orla Dempsey Abstract Background: Phototherapy remains a treatment option for moderate to severe psoriasis, generally after referral to secondary care. Objective: To examine the influence of socio-demographic and clinical factors on psoriasis patients quality of life, response to treatment and to evaluate satisfaction of these patients with the service and education provided in a nurse-led phototherapy unit. Methods: A prospective, cohort design was used. A questionnaire was formulated and case notes were used to derive clinical data. PASI and DLQI were included. Results: The median patient age was 36 (range 16-89), 79.8% of patients achieved 90%+ improvement in their PASI and 92% patients achieved 50%+ improvement in their DLQI with an average number of 26 treatments. Few factors were associated with improvements in PASI or DLQI. PASI improved most in those without joint pain. Older patients had a lower DLQI. Patients were most satisfied with the dignity and respect shown to them. Patients were least satisfied with delays on the day of treatment for phototherapy. The nurses knowledge was reassuring, and receiving education and samples of emollients was reported as beneficial. Conclusions: As a result of the study the authors aim to promote healthy lifestyle awareness as part of education sessions, expand the provision of moisturiser samples to patients and improve communication with regard to treatment delays. Findings may also suggest a cumulative negative impact on quality of life over the years: as age increased, the DLQI improvement decreased. Declaration of interest: None. Key words Phototherapy Psoriasis Satisfaction PASI DLQI Carmel Blake and Kelly Impey are Clinical Nurse Specialists and Michelle Greenwood is Clinical Nurse Manager at the Dermatology Department, Tallaght Hospital, Dublin. Prof Gabrielle McKee is Director of Research & Associate Professor, School of Nursing and Midwifery, Trinity College, Dublin. Dr Orla Dempsey is a Visiting Academic at the School of Nursing and Midwifery, Trinity College, Dublin Introduction The use of phototherapy remains an essential treatment option in psoriasis and expertise relating to the procedure involved in delivering therapeutic phototherapy is inherent While there has been some previous work on the factors that influence clearance following phototherapy, there has been less on the effects of phototherapy on quality of life. in the speciality of dermatology. Phototherapy treatment is used to improve the symptoms and ultimately improve quality of life. It may clear psoriasis and induce a long remission (Ryan et al, 2010), but realistic expectations need to be discussed with the patient because studies rarely report complete clearance (Al-Suwaidan, Feldman, 2000). Some patients are happy with just the improvement in symptoms (Al Sawaidan, Feldman, 2000). It is recognised that psoriasis negatively impacts on quality of life (Basra et al, 2008). While there has been some previous work on the factors that influence clearance following phototherapy, there has been less on the effects of phototherapy on quality of life (Ryan et al, 2010). There have been many studies that have reviewed patient satisfaction with psoriasis treatments, but few have examined satisfaction with phototherapy or in nurse-led clinics (Renzi et al, 2001; van Cranenburgh et al, 2013). Although previous work with dermatology patients has established that satisfaction is related to age, 44 Dermatological Nursing, 2015, Vol 14, No 2

2 disease severity and symptom-related poor quality of life, further study into the factors that influence satisfaction with this treatment is needed (Renzi et al, 2001). The aim of the study was firstly to evaluate satisfaction of patients with psoriasis with the service and education provided in a nurse-led phototherapy clinic, and secondly to examine the influence of sociodemographic and clinical factors on patients response to treatment and quality of life. This information would not only indicate the effectiveness of the service but may also reveal new insights into how to improve care. Methods Study site and design A prospective, cohort study was carried out in a large urban teaching hospital in Ireland. The study had both cross-sectional and longitudinal elements. The survey was carried out at end of treatment, while some of the clinical parameters were examined at both the beginning and end of treatment. The design was also naturalistic in that the patients therefore underwent normal care. Following consent they completed the study questionnaire. Questionnaire development and pilot study A confidential questionnaire on satisfaction was selected as the most appropriate method of data collection, as this would facilitate collection of data on many aspects of satisfaction Not sure 5 and allow further analysis into 9% the factors that might influence this satisfaction and patient outcomes. The questionnaire was drawn up after examination of many other questionnaires and guidelines used in satisfaction measurement. The questionnaire included the following Yes 28 52% domains of satisfaction: convenience, information, communication and organisation (van Cranenburgh et al, 2013). Population and sample New and return psoriasis patients prescribed UVA or UVB phototherapy by the consultant dermatologist were invited to take part in the study. To meet the power needs of the study, 72 patients were enlisted to complete a confidential questionnaire. Data was collected from April 2012 to July The study group included patients referred for body phototherapy. It excluded patients referred for only hand and foot treatment, those who had been on any phototherapy course within the last 3-month period and those who had not completed more than 80% of phototherapy treatments. Data collection tools The final questionnaire, which consisted of 41 questions, was given to all psoriasis patients attending for phototherapy. The questionnaire was anonymous. The questions included medical history, medications including The aim of the study was firstly to evaluate patients satisfaction with the service, and secondly to examine the influence of socio-demographic and clinical factors on patients response to treatment and quality of life. topical steroids and moisturisers used during phototherapy. The first 24 questions were closed yes/no answer questions, per taining to sociodemographic information, method of transport to clinic, psoriasis history, other health issues, use of moisturisers and steroids, advice received on skin condition and topical treatments. The next 17 questions were five-part Likert-style questions that assessed self-rated changes in condition and evaluated educational materials and service. To prevent bias several steps were taken. The patients were given the questionnaire on completion of their treatment and had the choice to take it home to complete it. Completion on site occurred privately in the waiting room and the questionnaires were left at the reception area, not handed back to the nursing staff. Care was taken within the questionnaire so that the patients did not have to refer to specific members of staff. In line with standard recommendations, the Psoriasis Area Severity Index (PASI) was used to measure the extent of psoriasis as part of our routine assessment. This is a tool devised by Fredriksson and Pettersson (1978). It has become a standard measurement used to assess the severity of psoriasis and response to treatment. It is the most adequate instrument available to assess the severity of plaque psoriasis (Schmitt, Wozel, 2005). The scores can be expressed as a scale. Schmitt and Wozel (2005) proposed the score of <7 be classified mild, 7-12 as moderate and >12 as severe. Quality of life was measured using the Dermatology Quality of Life Index (DQLI), developed by Finlay and Khan (1994), a widely accepted and validated tool used to measure the impact of skin disease on quality of life in dermatology (Basra et al, 2008). Scores range from 0-30: a DLQI score of less than 5 indicates a patient s psoriasis has minimal effect on their life (Finlay, Khan, 1994). A change in score of 5 units reflects meaningful change in patient quality of life (Katugampola et al, 2007). To assess the effectiveness of the treatment the team derived the following information from the nursing records: length of time on phototherapy waiting list, number of phototherapy sessions, steroid medications, PASI pre- and posttreatment, DLQI score pre- and posttreatment, additional medical history and medications. Data collection A dermatology nurse gave the questionnaire to patients on their last day of treatment at the phototherapy unit. The participants usually completed the questionnaire and consent form on site but some took Dermatological Nursing, 2015, Vol 14, No 2 45

3 Table 1. Patient socio-demographic and medical history profile. Age Years (median, range) 36 years (26.0 years ) Age at diagnosis Years (median, range) 18 years (17.5 years) Gender Male 50.6% (45) Marital status Single, Widowed/Separated/Divorced 36.4% (32) Married/Partner 63.6% (56) Level of education attained Primary 11.8% (10) Second level 43.5% (37) Third level 44.7% (38) Employment Employed/Self-employed 52.8% (47) Other 47.2% (42) Medical history Current smoker 28.4%(25) Takes prescribed medications 32.2% (28) High BP 9.0% (8) High cholesterol 11.2% (10) Joint pain 21.3% (19) Diabetes 2.2% (2) Other 5.6% (5) Family history of psoriasis 64.0% (57) Number of sessions did not attend 1.67±2.34 (range 0-12) Number of treatment courses attended 2.03±1.39 (range 1-6) None 31.8% (28) 1-2 units 18.2% (16) Alcohol consumption in last week 3-4 units 18.2% (16) 5-6 units 18.2% (16) 7-8 units 4.5% (4) 9 or more units 9.1% (9) Table 2. Use of topical preparations. Used moisturisers before starting phototherapy 78.2% Used topical steroids/tar preparations before starting phototherapy 71.9% Given samples of moisturisers by the dermatology nurse 71.4% Found the samples helpful 98.5% Used moisturisers during phototherapy 98.9% Not every day 3.4% Once a day 33.7% Twice a day 58.4% 3-4 times per day 4.5% had joint pain (21%) and were taking prescribed medications (32%) (Table 1). The average wait for treatment was approximately 6±3.8 (mean± standard deviation) weeks. Interestingly, while on the waiting list, 38.4% patients had a good to very good improvement in their psoriasis. Patients increased their use of moisturisers during phototherapy treatment, with the majority using moisturisers at least twice a day. them home and returned them by post. The questionnaire was coded to match it with the case notes. Ethics Ethics approval was obtained from the local ethics committee. Analysis Descriptive results of the survey are expressed as mean ± standard deviation, median and range or frequency as appropriate. The study used Analysis of Variance, Pearson s correlation and t-test for bivariate analysis as appropriate. The significant level was set at Results 107 questionnaires were distributed and the response rate was 95%. Four patients did not complete the course; four had only hand and foot treatment; four attended twice within the timeframe of the study and one patient switched to alternative therapy, leaving an analysis sample of 89. The mean age of the participants was 40, the median age was 36 (ranging from 16-89) and the median age of diagnosis was 17. The majority were married (64%), male (51%), and in employment (53%) (Table 1). The majority had a family history of psoriasis (64%); a large proportion The majority of patients used moisturisers (78%) and topical steroids (72%) before starting therapy (Table 2). Patients increased their use of moisturisers during phototherapy treatment, with the majority using moisturisers at least twice a day (Table 2). This correlates well with the recommendations in the departmental information leaflet given to patients in their education session. Pre-treatment, the vast majority of patients had either a moderate or severe PASI score (82%) and a low DLQI score (12.3) (Table 3). The average number of treatments was 26±7.4. There was a significant 46 Dermatological Nursing, 2015, Vol 14, No 2

4 improvement in PASI scores after treatment, improving from a mean score pre-treatment of 11.2 to 0.7 post treatment (p<0.001). The average change in PASI was 10.6 with 97.8% achieving 50% or more clearance and 47.2% achieving 100% clearance. The DLQI score changes over time were also significant (p<0.001), with a mean improvement of 10.6 ±6.2 (mean ±standard deviation) (Table 3). A total of 92.1% of patients achieved an improvement of 50% or greater in the DLQI score by the end of treatment. The influence of most social and clinical demographics (gender, insurance, employment, current smoking status, alcohol intake and family history) on change in the clinical outcomes PASI and DLQI was not significant. However there was a significant association between age and change in DLQI: as age increased, the change in DLQI decreased (r=-0.231, n=89, p=0.03). The influence of 9 of the clinical variables (smoking, taking medications, hypertension, hypercholesterolemia, diabetes, other co-morbidities, family history of psoriasis, number of sessions missed, previous courses of phototherapy) on change in PASI and DLQI was not significant (Table 1). There was a significant difference in the change in PASI for those with previous medical history of joint pain (9.9±5.1) and those without joint pain (12.8±5.1, t=2.15, p=0.04), the quality of life in those without joint pain improving more. Generally patients were very satisfied with all aspects of the service with a satisfaction level of 92% good to very good (Table 4). Overall they were most satisfied with the level of dignity and respect they were shown (good-very good: 100%), confidence in the nurses knowledge about psoriasis (good-very good: 100%) and phototherapy treatment (goodvery good: 100%). They were least satisfied with being informed about a delay on the day of treatment (satisfied-very satisfied: 86.7%), length Table 3. Psoriasis Area and Severity Index (PASI) and Dermatology Quality of Life Index (DLQI) scores pre- and post-treatment. PASI category Pre % (n) Post % (n) Mild 18.0% (16) 98.9% (88) Moderate 44.9% (40) 1.1% (1) Severe 37.1% (33) 0% (0) DLQI Pre (mean ± S.dev) Post (mean ± S.dev) 12.3± ±2.4 Table 4. Satisfaction with the nurse-led service results. Information Very poor average Good very good Leaflet given to you by the nurse on psoriasis 8.2% (5) 91.8% (56) Leaflet given to you by the nurse on light treatment 4.0% (3) 96.0% (72) Knowledge of the possible side-effects of light treatment 13.9% (12) 86.1% (74) Communication Very poor average Good very good Time given to you by the nurse to explain psoriasis 12.9% (11) 87.2% (75) Time given to you by the nurse to explain light treatment 4.5% (4) 95.4% (84) Time given to you by the nurse to listen to any questions 1.1% (1) 98.9% (87) Answers given to you by the nurse about any questions 18.1% (16) 81.8% (72) Confidence in the nursing staff knowledge on psoriasis % (87) Confidence in the nursing staff knowledge on light treatment % (88) Dignity and respect shown to you by the nursing staff while having the light treatment % (89) Organisation Very dissatisfied ok Satisfied very satisfied Length of time you had to wait to be booked in for the light treatment 21.0% (18) 79.1% (68) Appointment times offered to you by the nursing staff 6.8% (6) 93.2% (82) Being kept informed of delays if appointment was delayed 13.3% (10) 86.7 (65) Contact with the light treatment clinic, to make/change/ cancel appointment time 3.6% (3) 96.5% (81) There was a significant difference in the change in PASI for patients with a previous medical history of joint pain and those without the quality of life in those without joint pain improved more. of time waiting to start phototherapy treatment (satisfied-very satisfied: 79.1%). Although the waiting time for treatment was over 6 weeks, half of the patients were very satisfied with the length of time waiting to start phototherapy treatment (Table 4). Discussion Unfortunately at present psoriasis is incurable so treatments are focused on controlling the signs and symptoms and minimising the social and psychological effects associated with the skin condition (Gokdemir et al, 2008). In the authors study, the PASI score pre- and post-treatment was used to assess the response to phototherapy. 79.8% of patients Dermatological Nursing, 2015, Vol 14, No 2 47

5 achieved % clearance of their psoriasis. This compares well to the findings of Ryan et al (2010), where 83% of their cohort achieved clearance. The number of exposures for clearance was an average of 26, which is comparable to the findings of Kirke et al, 2007, who reported a mean of 28.4 for clearance. The adherence to appointments was good (Table 1). All patients had a DLQI completed before and after treatment, 63% of patients had a DLQI score of less than 5 after treatment, which is considered to indicate that symptoms have improved dramatically (Finlay, Khan, 1994). There is a genetic predisposition for developing psoriasis and 64.8% of patients reported a positive family history, but there are other factors involved. Psoriasis is no longer recognised as just a skin disease. It is now acknowledged to be a systemic inflammatory disease associated with prevalence of unhealthy lifestyle factors and co-morbidities such as hypertension, diabetes and cardiovascular disease (Wakkee et al, 2007). Despite the low average age of patients, co-morbidities were identified (Table 1). When educating patients it is important for them to understand their disease and behavioural risk so that they are aware of the benefits of healthy lifestyle choices, both to psoriasis and general health. In such a young population, comprehensive recording and education of co-morbidities and other disease risk factors is warranted, as is further research to ensure we are meeting the general health needs of these patients. In contrast with previous studies several factors were not significantly associated with clearance. Increased alcohol intake is often reported in patients suffering from psoriasis and high alcohol consumption has been identified as a risk factor for psoriasis (Poikolainen et al, 1990). A total of 67% of patients reported drinking alcohol on the week of the study, although the majority of them were not above the national recommended limits. It is hard to compare this with the study of Fernandez-Torres et al (2012), who reported that 63.6% of their group did not drink regularly and found that patients that consumed more alcohol had a higher PASI score. Our study found no association between alcohol intake and change in PASI score. This could be attributed to the method used to measure and analyse alcohol intake. Although smoking has also been linked to increased severity of psoriasis (Fortes et al, 2014), this study collaborated earlier findings and did not find any difference in the smokers response to treatment or post-treatment quality of life or PASI scores (Fernandez-Torres et al, 2012). The presence of comorbidities came to the fore as a result of the study: therefore we plan to incorporate education on risks and behavioural changes relevant to common co-morbidities. This again needs further research investigation in large multivariate studies. In the absence of such research, practice should continue to use the opportunity to promote smoking cessation for both this disorder and general health purposes. Phototherapy clinics are most commonly run by dermatology nurses (Eedy et al, 2009). The dermatology nurses therefore play a pivotal role in the care of dermatology patients. They are usually the first point of contact for patients and are in an ideal situation to help and support psoriasis patients (Courtenay, Carey, 2006). Satisfaction levels were high (92%) in this study relative to other studies (60%-72%) (van Cranenburgh et al, 2013; Renzi et al, 2001). This may in part be due to the use of different satisfaction tools, as well as the fact that this study examined satisfaction specifically to phototherapy and in a nurse-led clinic. The area of least satisfaction was with the organisational category. It reported that patients were least satisfied with being informed about a delay on the day of treatment. As stress can be a factor in psoriasis flare-up, it is important that we do not contribute to their stress. We will ensure that any delays will be minimised and, if unavoidable, patients will be informed of them. Instilling patient confidence in nursing staff is important. Nearly 90% of patients felt they had confidence in the knowledge of the dermatology nurse. This educational role of the nurse is vital in phototherapy as we are the patient s advocate, helping them raise concerns if they have questions on their treatment. While 87.5% of patients reported a high level of satisfaction with the education received about their psoriasis during treatment, 12% were not. On reflection we should have asked for a comment, so that those who were not satisfied could provide us with information that could improve practice. It is unclear whether their dissatisfaction was due to the time constraints in a busy unit or our assumption that patients with long-standing psoriasis did not require education. Irrespective of the cause of dissatisfaction, it is a trigger to review all aspects of care so as to further optimise satisfaction in the future. 98.9% reported high levels of satisfaction at answers given by the nurses to any of their questions. Courtenay and Carey (2006) highlighted that patients who received nursing education about topical treatments noticed a reduction in their skin condition severity and improvement in the ability to cope with their condition. It has been reported that education in patients with chronic skin disease appears to improve the quality of life and reduce the perceived severity of skin disease (De Bes et al, 2011). 48 Dermatological Nursing, 2015, Vol 14, No 2

6 Application of topical treatments is incorporated into patient education sessions. Our survey showed that over 80% of patients received education on moisturisers before starting phototherapy. However, only 67.5% of patients received education on how to use topical steroids or tar preparations. This may have been due to the fact that not all patients are prescribed topical steroids/ tar preparations while waiting on phototherapy. Overall, compliance with application of moisturisers was satisfactory at 63%, which was slightly below the levels observed in a previous study (Gokdemir et al, 2008). Although these levels are relatively high it does highlight the need to possibly reinforce education on the use of topical treatments as this may lead to even better adherence. Over half of our patients found receiving moisturising samples helpful. This is something we plan to integrate as part of our education sessions, which might be another factor that will improve adherence. Wahl et al (2013) suggested that people with a higher education level demonstrate more interest in knowledge about their condition. Jankowiak et al (2004) reported that the level of knowledge in patients with psoriasis was shown to be significantly determined by age and level of education. A large proportion of our study were young and 44.7% attended third-level education and seemed to be interested in their condition and treatment. Significant correlation between adherence and education level was reported by Gokdemir et al (2008), which may explain what motivated our patients to apply their prescribed treatments, and contributed to some patients reporting an improvement in their psoriasis while on the waiting list to start phototherapy. Conclusion The use of phototherapy continues to be a principal treatment option in psoriasis, and expertise in delivering therapeutic phototherapy is essential within the speciality of dermatology. This study showed the effectiveness of the treatment in improving PASI and DLQI scores. Insight was obtained into patients profile, satisfaction and areas where we could make improvements. The presence of co-morbidities came to the fore as a result of the study; we plan to incorporate education on risks and behavioural changes relevant to common co-morbidities. We also plan to re-educate patients about application of topical treatment and provide more samples; either or both may further improve adherence to application recommendations. Review of procedures such as how to deal with delays even more effectively would assist in optimising organisational satisfaction. DN References Al-Suwaidan SN, Feldman SR (2000) Clearance is not a realistic expectation of psoriasis treatment. J Am Acad Dermatol 42(5 Pt 1): Basra MKA, Fenech R, Gatt RM, Salek MS, Finlay AY (2008) The Dermatology Life Quality Index : A comprehensive review of validation data and clinical results. 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