Patients’ knowledge about psoriasis and its treatment has been randomly studied previously.
The aim of the study is to investigate patients’ knowledge about psoriasis in relation to undergoing patient education in the context of climate therapy (CT). The psoriasis knowledge questionnaire (PKQ) was used in a follow-up pre–post study design of Norwegian patients with psoriasis at the age of 20 years and older undergoing CT at Gran Canaria (Spain). Patients completed the PKQ and provided selected demographic, clinical and health information before (T1), immediately after (T2), and 3 months after (T3) CT. Disease severity was assessed using the psoriasis area and severity index (PASI). 254 psoriasis patients were included (74%). The PKQ score improved significantly from T1 to T2 and T3 (
Knowledge about a disease and its treatment alone does not change the attitudes and health behaviour related to living with chronic illness. Nevertheless, knowledge about a disease and its treatment is important for coping with the symptoms and living well with a chronic illness. Integration of knowledge, skills, and values enhances an individual’s health competence, which in turn may affect the patient’s involvement with their disease, health, work, coping, and quality of life [
Research has shown that living with psoriasis can be difficult and can affect different aspects of quality of life [
Climate therapy (CT) at Gran Canaria combines treatments with sunlight and salt water to relieve symptoms and is a treatment option for psoriasis patients in Norway [
Although a patient’s knowledge about a disease and its treatment is not the only factor explaining success with self-management, it should not be overlooked in the modern health care system, which relies on principles of shared decision making and partnerships between doctors and patients. Although patients’ knowledge about their disease and treatment has been studied previously, the assessment tools are old [ describe the level of knowledge in a sample of patients with psoriasis entering a CT programme, investigate the associations between selected demographic, clinical factors and knowledge about psoriasis, evaluate changes in knowledge in a sample of patients with psoriasis undergoing CT (including a standard programme of patient education).
The present study is a follow-up, pre-post study design of Norwegian patients with psoriasis at the age of 20 years and older who were offered a 3-week CT programme at Gran Canaria. The design included three measurements over a period of 4 months. The patients were recruited to the study when they arrived at the treatment centre. They completed the questionnaire just before (T1) and immediately after CT (T2) and again 3 months after CT (T3). The study lasted from late April 2009 to early January 2010, and during this time 343 psoriasis patients completed the CT programme and were eligible for the study. Of these 343 patients, 254 (74%) agreed to be included in the study. Reasons for not willing to participate were not evaluated. For the PKQ and the purpose of this paper, the data were available for 253 (T1), 249 (T2), and 211 (T3) patients, resulting in response rates of 98% (249/254) for T2 and 83% (211/254) for T3.
The study was approved by the hospital administration and Norwegian Social Science Data Service and was recommended by the Regional Committee for Medical Research Ethics for Southern Norway. The protocol complied with the Declaration of Helsinki.
The 3-week CT programme comprised both a sun and sea treatment and patient education. Patients received on average 80 h of sunshine during their stay. The sun exposure was scheduled individually with respect to skin type and ultraviolet index. They were encouraged to swim frequently in salt water and use moisturizing creams. A Nordic medical team (dermatologist, nurses, and physiotherapist) monitored the patients. Patients received both individual and group-based education, guidance, and daily training. Some parts were mandatory and some parts were voluntary. The teaching programme included information and dialogue about psoriasis pathogenesis, manifestations, comorbidity, quality of life and treatment options, physical activity, and dietary aspects. Patients also participated in group discussions focusing on living with psoriasis.
The PKQ, which is a simple additive index, was developed in the Norwegian dermatology context and contains 49 statements about psoriasis. The items are shown in Table
The PKQ items: percentages of correct and uncertain answers at baseline (T1).
The 49-item PKQ | True/false | Percentage of correct answers | Uncertain |
---|---|---|---|
(1) Once you have psoriasis, the illness will become increasingly worse. | False | 41 | 27 |
(2) The ways psoriasis develops vary greatly. | True | 91 | 7 |
(3) People with psoriasis can develop psoriatic arthritis. | True | 91 | 7 |
(4) With psoriasis, there is increased division of the cells in the skin. | True | 89 | 9 |
(5) If all signs of psoriasis are gone, you are completely cured. | False | 84 | 14 |
(6) The more psoriasis you have, the greater the chances for developing psoriatic arthritis. | False | 30 | 59 |
(7) Scaling of the skin is the result of accumulation of dead cells. | True | 78 | 16 |
(8) With psoriasis, the skin feels warm because of increased blood flow in the psoriatic lesions. | True | 31 | 48 |
(9) A throat infection can/may cause psoriasis. | True | 62 | 27 |
(10) A skin injury can/may cause psoriasis. | True | 71 | 20 |
(11) Taking antibiotics can/may cause psoriasis. | False | 11 | 65 |
(12) Environmental pollution can/may cause psoriasis. | False | 17 | 67 |
(13) Antimalaria and high blood pressure medicines can/may worsen psoriasis. | True | 11 | 81 |
(14) Stress or worry can/may exacerbate psoriasis. | True | 95 | 3 |
(15) Sunlight can/may exacerbate psoriasis for some people. | True | 51 | 31 |
(16) Diet is important to the development of psoriasis. | False | 7 | 36 |
(17) Laundry powder and various types of chemicals exacerbate psoriasis. | False | 8 | 55 |
(18) Scratching the skin can/may worsen psoriasis. | True | 56 | 31 |
(19) Treatment is the same for all psoriasis patients. | False | 79 | 13 |
(20) Treatment depends on lifestyle, the severity of psoriasis, and the location of the lesions. | True | 63 | 23 |
(21) Cortisone ointment/cream may be applied only for one week at a time. | False | 36 | 29 |
(22) There are several types of cortisone ointments/creams with different potency for the treatment of psoriasis. | True | 91 | 8 |
(23) Research shows that herbal medicines have a positive effect on psoriatic lesions. | False | 20 | 71 |
(24) Daivonex (calcipotriol) ointment/cream contains a substance similar to vitamin D. | True | 55 | 42 |
(25) Vitamin D preparations should be applied abundantly to the lesions, but the amount used should not exceed 100 grams per week. | True | 15 | 71 |
(26) All topical treatments for psoriasis can/may be applied at all skin locations over the entire skin surface. | False | 43 | 42 |
(27) Phototherapy can/may increase the risk of skin cancer. | True | 36 | 47 |
(28) Sunlight suppresses the immune system of the skin. | True | 25 | 39 |
(29) Methotrexate is used in the treatment of psoriatic lesions and arthritis. | True | 65 | 34 |
(30) Moisturizers stop the skin’s ability to produce fatty substances, and thereby you become dependent on using them to keep your skin moist. | False | 46 | 46 |
(31) There is no upper limit regarding UVB treatment for psoriasis. | False | 63 | 29 |
(32) Daivobet ointment contains only cortisone. | False | 37 | 52 |
(33) Vitamin A preparations (e.g., Neotigason) cannot be used during pregnancy. | True | 19 | 79 |
(34) Carbamide-containing moisturizers can/may reduce the scaling. | True | 43 | 55 |
(35) Creams contain more fat than ointments. | False | 43 | 43 |
(36) Cyclosporin (Sandimmun Neoral) affects the immune system and can be used to treat serious cases of psoriasis. | True | 19 | 80 |
(37) Psoriasis located in nails is difficult to treat. | True | 62 | 36 |
(38) Ointment is often a better treatment for psoriasis than cream. | True | 52 | 39 |
(39) Salicylic acid ointment/oil is used to remove psoriasis scales of the skin and the scalp. | True | 89 | 10 |
(40) The effect of locally applied cortisone may decrease with daily use over several months. | True | 61 | 36 |
(41) Enbrel/Remicade heals psoriasis. | False | 25 | 59 |
(42) Psoriasis is an inflammation of the skin. | True | 53 | 25 |
(43) Psoriasis is an infectious disease. | False | 53 | 36 |
(44) Psoriasis is a disease of the immune system. | True | 43 | 32 |
(45) Psoriasis is an allergic disease. | False | 67 | 28 |
(46) Women are more prone to psoriasis than men. | False | 46 | 56 |
(47) Psoriasis can pass between generations. | True | 77 | 21 |
(48) Psoriasis occurs most frequently in people older than 50 years. | False | 51 | 42 |
(49) Overweight, diabetes, and cardiovascular diseases occur more frequently in people with psoriasis than in the general population. | True | 31 | 60 |
In addition to the PKQ, at T2, a single item asked the patients to rate to what extent the CT programme had contributed to their knowledge about psoriasis. The possible responses were “considerably,” “some,” “little,” and “not at all.” They were also asked to answer an open-ended question about the reason(s) for their response.
The questionnaire contained questions about age, sex, marital status, level of formal education, cohabitation, work, duration of psoriasis, previous CT, and comorbidities. Disease severity was assessed using the psoriasis area and severity index (PASI). The diagnosis of psoriatic arthritis was confirmed by patient records.
The SPSS PC version 19.0 was used to analyse the data. Descriptive analyses were performed to assess the frequency, mean, standard deviation (SD), and range of scores (minimum to maximum). Cronbach’s alpha was used to estimate the internal consistency of the scale (reliability). Paired-sample
The mean age for the sample was 47 years (range 20–80) and comprised 40% women. Sixty percent of the sample reported <12 years of education (primary school level), and 69% were in paid work. Forty-four percent reported comorbidity, and the mean duration of psoriasis was 24 years (SD = 13). Further information about the demographic and clinical characteristics is shown in Table
Descriptive data,
|
Range (mean) SD |
|
|
---|---|---|---|
Age, years | 254 | 20–80 (47) 12 | |
Years with psoriasis | 245 | 1–60 (24) 13 | |
BMI | 251 | 17–49 (28) 5 | |
Pretreatment PASI score | 253 | 0.4–26.1 (7.5) 4.1 | |
Posttreatment PASI score | 253 | 0–20.6 (1.6) 2.2 | |
Sex, women | 254 | 102 (40) | |
Educational level | 254 | ||
Primary school |
153 (60) | ||
University < 4 years | 52 (20) | ||
University |
49 (19) | ||
Employed, yes | 254 | 174 (69) | |
Living alone, yes | 250 | 70 (28) | |
Comorbidity, yes | 254 | 111 (44) | |
PsA verified by doctor, yes | 252 | 64 (25) | |
Previous climate therapy, yes | 252 | 140 (55) | |
PKQ T1 | 253 | 5–43 (24.4) 7.0 | |
PKQ T2 | 249 | 6–44 (29.7) 7.0 | |
PKQ T3 | 211 | 9–43 (29.3) 7.1 |
BMI: body mass index, PsA: psoriasis arthritis, PASI: psoriasis area severity index, PKQ: psoriasis knowledge questionnaire, T1: before climate therapy, T2: immediately after climate therapy, and T3: three months after climate therapy.
The percentage of correct answers at T1 (before CT) varied greatly between the 49 PKQ items (see Table
On the single question asking the patients at T2 to what extent the CT programme had improved their knowledge about psoriasis, 62% reported considerably, 34% to some extent, 3% little, and 1% not at all. When responding to the open-ended question about the reason for improvement, participants mentioned frequently the education programme and meeting other patients.
Results from the multiple linear regression (forward) analysis show that sex (women), higher educational level, higher PASI score, and previous CT were significantly associated with greater psoriasis-related knowledge at T1 (before CT). This model explained 20% of the variance in the PKQ score at T1. Further information is presented in Table
Associations between demographic and clinical factors and PKQ by simple (unadjusted) and multiple (forward) (adjusted) linear regression analysis at T1.
Patients’ level of knowledge (PKQ) (higher score indicates greater knowledge) | ||
---|---|---|
Unadjusted Stdandard beta coefficient ( |
Adjusted Stdandard beta coefficient ( |
|
Sex (1 = men; 2 = women) | 0.20 (0.001) | 0.25 (0.000) |
Cohabitation (0 = together; 1 = alone) | ns | ns |
Education (1–5: higher score = higher level of education) | 0.25 (0.000) | 0.27 (0.000) |
Age (years) | ns | ns |
BMI (higher score = higher BMI) | ns | ns |
PASI (higher score = more severe disease) | ns | 0.19 (0.002) |
PsA (1 = no; 2 = yes) | 0.14 (0.023) | ns |
Comorbidity (1 = no; 2 = yes) | ns | ns |
Previous climate therapy (1 = no; 2 = yes) | 0.28 (0.000) | 0.29 (0.000) |
BMI: body mass index, PsA: psoriasis arthritis, PASI: psoriasis area severity index, PKQ: psoriasis knowledge questionnaire, T1: before climate therapy, and ns: nonsignificant.
The mean PKQ scores at the different measurement times (T1–T3) are shown in Table
Twelve percent of the patients had a lower PKQ score at T2 compared with T1, and 14% of the patients had a lower score at T3 than at T1. The PKQ score improved by 9 points in 25% of the patients from T1 to T2 and in 19% from T1 to T3.
The present study focused on psoriasis patients’ knowledge of broad medical domains. The patients completed the PKQ in the context of CT. The importance of patient knowledge in the modern health care setting is based on the philosophy of a partnership between the patient and doctor for shared decision making about treatment options. In the study by Renzi et al. [
We found large variations in knowledge between items on the PKQ, which may be interpreted as favourable with regard to the questionnaire’s ability to reveal strengths and weaknesses within a patient’s knowledge. The statement that attracted the highest percentage of correct answers was that stress and worry can exacerbate psoriasis (item 14), whereas the statement with the lowest percentage of correct answers was the statement that diet is important to the development of psoriasis (item 16). Because knowledge profiles have been studied rarely in relation to psoriasis, there are few studies with which to compare our results. A study by Lanigan and Layton [
The knowledge level improved significantly from before to immediately after CT and remained at the same level after 3 months, suggesting that the CT programme had an impact. Due to the programme content, we may anticipate some change in knowledge (education about the topics and patients talking with health personal and fellow patients during the CT). However, the magnitude of change is difficult to evaluate. Additional studies in different patient education settings for psoriasis are needed in order to decide on the clinical significance of the findings related to change in knowledge. Because of the lack of a control group, it is not possible to draw conclusions about cause and effect. However, because the patients’ knowledge was measured by factual questions, one may assume that the CT programme, which included education, counseling, and support from other patients, influenced their knowledge level. This conclusion is also supported by the responses to the open-ended questions, which showed that most patients thought that the stay had improved their knowledge, specifically the importance of the courses and support from fellow patients. A study examining the effect of an empowerment-based educational intervention among psoriasis patients attending a medical spa showed improved knowledge about the disease in the experimental group, although knowledge was measured as only one dimension of empowerment [
We found several significant associations between selected demographic and clinical variables and knowledge. Being a woman, living with someone, higher educational level, having more severe disease, and previous participation in CT were significantly related to better knowledge at baseline. Our findings contrast with those of Lanigan and Layton [
Based on the results from both the developmental stages of the PKQ and the empirical study, we consider the PKQ a proper tool for measuring knowledge in the setting of psoriasis. The instrument could be used in clinical practice to create a patient knowledge profile to individualize patient information and education.
Further research should use gold standard designs to study the effects of different educational interventions on knowledge and to evaluate the relationships between patient knowledge, self-management skills and competence, and quality of life.
The authors declare that they have no conflict of interests.
The authors thank the patients and the health care personnel who participated in the study. The study was financed by the University of Oslo and the Section for Climate Therapy, Oslo University Hospital.