|Year : 2019 | Volume
| Issue : 1 | Page : 12-18
Patient's perception and importance of clear/almost clear skin in moderate-to-severe plaque psoriasis: Results of clear about psoriasis survey in Taiwan
Yu-Huei Huang1, Tsu-Man Chiu2, Ji-Chen Ho3, Chih-Chiang Chen4, Rosaline Chung-Yee Hui1, Po-Ju Lai5, Tsen-Fang Tsai6
1 Department of Dermatology, Chang Gung Memorial Hospital; School of Medicine, Chang Gung University, Taoyuan, Taiwan
2 Department of Dermatology, Changhua Christian Hospital, Changhua, Taiwan
3 Department of Dermatology, Chang Gung Memorial Hospital, Chang Gung University College of Medicine, Kaohsiung, Taiwan
4 Department of Dermatology, Taipei Veterans General Hospital, Taipei, Taiwan
5 Department of Dermatology; School of Medicine, Chung Shan Medical University, Taichung, Taiwan
6 Department of Dermatology, National Taiwan University Hospital and National Taiwan University College of Medicine, Taipei, Taiwan
|Date of Submission||30-Jan-2018|
|Date of Acceptance||30-Jul-2018|
|Date of Web Publication||28-Mar-2019|
Department of Dermatology, National Taiwan University Hospital, National Taiwan University College of Medicine, Taipei
Source of Support: None, Conflict of Interest: None
Background: Psoriasis has been reported to impact patients' health-related quality of life. Limited data are available on patients' perception of this disease and the importance of clear/almost clear skin as a treatment goal in Taiwan. Objectives: A clear about Psoriasis worldwide survey was conducted among patients with moderate-to-severe psoriasis to assess patients' perspective on the impact of psoriasis on their personal and professional lives, treatment satisfaction, and the importance of achieving clear/almost clear skin. Here, we report the data for the Taiwanese patient population. Methods: A 20-min survey consisting of multiple choice questions and validated scales to assess disease severity and patient' quality of life was conducted between October 2015 and March 2016. Patients (age ≥18 years) with medically diagnosed moderate-to-severe psoriasis (Psoriasis Area and Severity Index [PASI] score ≥10 or PASI >5 to <10, plaques on visible or sensitive areas), not participated in any online surveys on psoriasis in the past 4 weeks were included in the survey. Results: Eighty-four respondents (male, 56%) with an average PASI score of 17.1 were analyzed. The majority of respondents (77%) had not achieved clear/almost clear skin and 71% believed that it is unachievable. Overall, 20% of patients did not feel comfortable telling their doctor that they want clear/almost clear skin, and 32% had never discussed it. Furthermore, 19% of patients were dissatisfied with their current treatment and 46% were uncertain if they were satisfied or dissatisfied. Overall, 96% of respondents experienced either discrimination or humiliation in daily life and 51% felt that psoriasis affected their professional life. Conclusions: The results of this survey demonstrate that, despite significant progress in the management of psoriasis, the treatment satisfaction level of patients remains suboptimal in Taiwan. The data highlight the need for patients to discuss their treatment goals with clinicians.
Keywords: Clear skin, patient survey, psoriasis, quality of life, Taiwan
|How to cite this article:|
Huang YH, Chiu TM, Ho JC, Chen CC, Hui RC, Lai PJ, Tsai TF. Patient's perception and importance of clear/almost clear skin in moderate-to-severe plaque psoriasis: Results of clear about psoriasis survey in Taiwan. Dermatol Sin 2019;37:12-8
|How to cite this URL:|
Huang YH, Chiu TM, Ho JC, Chen CC, Hui RC, Lai PJ, Tsai TF. Patient's perception and importance of clear/almost clear skin in moderate-to-severe plaque psoriasis: Results of clear about psoriasis survey in Taiwan. Dermatol Sin [serial online] 2019 [cited 2022 May 29];37:12-8. Available from: https://www.dermsinica.org/text.asp?2019/37/1/12/255032
| Introduction|| |
Chronic plaque psoriasis, the most common form of psoriasis, is a chronic, disabling, and complex inflammatory disease that primarily affects the skin. The estimates of the prevalence of psoriasis in adults ranged from 0.51% to 11.43%, in children from 0% to 1.37%, with approximately 20%–44% of psoriasis patients suffering from moderate-to-severe forms of the disease.,, The mean 1-year prevalence of psoriasis in Taiwan was 0.23% for men and 0.16% for women, respectively. The prevalence of psoriasis increased more rapidly in male patients aged 30 years and over, and reached its peak in patients aged 70 years and over, regardless of gender.
Clinically, psoriasis is characterized by well-demarcated red, scaly plaques that are clearly distinguished from adjacent, normal appearing, and nonlesional skin.,, Patients with psoriasis have an increased risk of developing several comorbidities, such as diabetes, hyperlipidemia, hypertension, cardiovascular diseases, malignancies, and depression, which in turn impacts their health-related quality of life (HR-QoL).,,,,,, The main goal of treatment is to reduce the signs and symptoms of the disease and improve patient care, with minimal impact on HR-QoL upon achievement of clear skin. Improvements in skin lesions are usually assessed by the Psoriasis Area and Severity Index (PASI), which quantifies the severity of the disease.,
Available systemic biologics target the pathophysiological pathways modulated by several cytokines (anti-tumor necrosis factor, anti-interleukin [IL]-12/23, and anti–IL-17)., An improvement of 75% in the PASI score from baseline is currently used as the primary treatment goal of most pivotal studies of biologics, and an improvement of 90% has been associated with achievement of clear/almost clear skin.,, In Taiwan, 98.4% of patients received treatment with topical corticosteroids along with Chinese herbal medicines (13.1%) and systemic treatment (13.6%). Several reports indicate that there is a gap between the broad spectrum of treatment options available for patients with psoriasis and the quality of care actually provided to those patients in practice.,, Many patients are dissatisfied with their treatment and the management of their disease,,, with some expressing the notion that the therapies they receive are not aggressive enough to adequately treat their psoriasis.
The worldwide clear about Psoriasis patient survey was conducted in more than 8338 patients with moderate-to-severe psoriasis to understand the personal and emotional impact of psoriasis; quantify patients' perspectives on the ability to achieve clear skin; and provide evidence on the significant impact of psoriasis on patients. Here, we report the perceptions and insights of the Taiwanese patient population from the survey on the achievement of clear skin and the impact of psoriasis on their personal and professional lives, treatment goals, and subsequent satisfaction levels.
| Methods|| |
This survey was developed in collaboration with a steering committee of medical experts that included dermatologists, general practitioners, and representatives of psoriasis patient advocacy organizations (the US National Psoriasis Foundation and European Federation of Psoriasis Associations), and the survey design has been described previously., The survey was conducted in 31 countries worldwide, translated into 32 languages, and consisted largely of multiple-choice questions which could be completed in approximately 20 min [Supplementary Material [Additional file 1]]. The survey was primarily conducted online; however, face-to-face interviews were also considered, based on the feasibility of patients to participate in the survey online. Well, known validated patient-reported assessment tools were used to capture the impact of clear/almost clear skin on multiple dimensions of patients' lives, including skin, work productivity, sleep, and well-being. No definition of clear skin was provided in the survey, and spontaneous feelings/perceptions were reported.
Participants were recruited via psoriasis patient organizations and the market research company Gesellschaft für Konsumforschung (Nuremberg, Germany), and screened for eligibility., The patient advocacy organizations distributed the hyperlink to the survey via different channels, including Twitter, Facebook, and online/offline newsletters.
Patients who were ≥18 years old with plaque psoriasis diagnosed by a general practitioner, dermatologist, rheumatologist, allergologists, or other medical professionals were eligible for the survey.
Moderate-to-severe psoriasis was defined using self-assessed PASI as either (1) PASI ≥10, which is a standard definition of moderate-to-severe psoriasis or (2) PASI >5 to <10, wherein psoriasis affects sensitive and/or prominent body parts including the face, palms, hands, fingers, genitals, soles of feet, or nails. The second definition was introduced following endorsement by expert dermatologists on the survey steering committee and after approximately 40% of enrollment was complete. However, in case of Taiwan, 100% of patients were recruited before definition 2 was introduced. The second definition accounted for the potentially debilitating impact of psoriasis located on certain body parts.
Ethical conduct of the survey
Patients provided informed consent at the beginning of the survey. As this was a noninterventional study that invited members of the public to participate, this study was exempt from Institutional Review Board review.
| Results|| |
Recruitment and conduct of the survey
The survey was conducted between October 2015 and March 2016. A total of 398,230 patients were recruited in the global survey and directed to the landing page of the survey website; 154,000 patients answered the survey and were screened for eligibility during the first 19 questions. Of the screened sample, 8338 patients met the eligibility criteria and completed the survey.
Of the 84 respondents from Taiwan, 52% were from Taipei, 19% were from Taichung and Nantou, and 29% were from Kaohsiung. The demographic and clinical characteristics of respondents are shown in [Table 1]. The majority of patients were male (56%), with a mean age of 43 years for females and 41 years for males. The average PASI score of Taiwanese respondents was 17.1, and all of them had a PASI score ≥10. Furthermore, 36% of respondents had psoriatic arthritis in addition to plaque psoriasis. Only 27% of respondents were aware of PASI score, but the majority (70%) could not recall it.
Feelings about clear skin and treatment
About 23% (n = 19) of respondents from Taiwan reported achieving clear/almost clear skin with their current treatment. Furthermore, 29% believed that achieving clear/almost clear skin was possible irrespective of their current status (patients who achieved clear skin vs. those who did not), and the majority of these were in the age group of 18–30 years. Of those patients, who had achieved clear/almost clear skin, 47% believed that achieving clear/almost clear skin was possible before achieving it themselves, whereas this proportion was 23% among those who had not achieved clear/almost clear skin [Figure 1].
|Figure 1: Patients' perception of whether clear or almost clear skin is achievable (n = 84), (a) all patients, (b) patients who have not achieved clear or almost clear skin, (c) patients who have achieved clear or almost clear skin (belief before achieving it)|
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Overall, 48% of respondents felt comfortable speaking to their physicians about wanting to achieve clear/almost clear skin, 20% reported that they were not comfortable having this discussion, and 32% had not spoken to their physicians about this. Among the respondents who had achieved clear/almost clear skin, 74% were comfortable having this discussion with their physicians, 5% were not comfortable discussing this, and 21% had not spoken to their physicians about their situation. Of the respondents who had not achieved clear/almost clear skin, 40% were comfortable having this discussion with their physicians, 25% were not comfortable discussing this, and 35% had not spoken to their physicians about wanting to achieve this outcome.
Only 35% of all patients were satisfied with the current treatment provided by their physicians; this included 68% of patients who had and 25% of those who had not achieved clear/almost clear skin. The most frequent reasons for treatment satisfaction were reduced itching (62%), disappearance of pain and soreness (55%), and quick improvement in symptoms (34%). The “treatment did not work” was the major reason for dissatisfaction (69%), followed by “not achieving clear skin” (63%). The top three goals of treatment among patients were reduced itching (60%), reduction/disappearance of plaques (44%), and reduction of flakes [39%; [Figure 2]. Patients who achieved clear or almost clear skin (n = 19) required >1 year of treatment (79%) to achieve clear skin following the diagnosis of psoriasis. Of these, 32% were prescribed effective treatment for >5 years. On average, patients were prescribed at least three different treatments and had consulted three different medical professionals before achieving clear or almost clear skin.
|Figure 2: Treatment goals that patients agree with their clinician (n = 84)|
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Effect of psoriasis on daily life
A large proportion (96%) of the respondents had experienced some form of discrimination or humiliation. Many reported being asked if their condition was contagious (79%) or that other people did not understand the impact of psoriasis on life and thought that it only affected the skin (52%). Patients also reported being refused by their hairdresser to cut their hair (20%), being made the center of jokes (19%), or being bullied (11%). In addition, a large proportion of respondents (43%) reported doing additional housework, for example, cleaning up skin flakes, or washing bloody/stained sheets [Figure 3].
|Figure 3: Proportion of patients whose everyday life was affected by psoriasis|
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When asked the question “what feelings are associated with living with psoriasis?” most patients responded that they felt self-conscious (70%), less confident (58%), and depressed (56%) because of their skin condition [Figure 4]. About 51% of patients felt that the disease affected their professional life. In the previous 6 months, 39% (women 26% and men 45%) of the respondents who were employed (70% of the total patients) reported taking at least 1 day off work because of psoriasis, while 8% took more than 14 days off. More than half of the respondents reported that psoriasis affected their work life, with a majority responding that they left flakes of skin everywhere (70%), not fully productive due to itching (70%), not fully productive at work (65%), and were not able to concentrate (56%). Other commonly reported issues were “I worry that I will lose my job” (53%), “I am not fully productive due to pain” (51%), “I didn't get the preferred job that I wanted” (37%), and “I do not attend work social events” (35%).
|Figure 4: Proportion of patients who responded about their feelings associated with living with psoriasis|
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Further, 56% of patients reported that their condition had affected past or current relationships, with as many as 49% being unable to stand the thought of someone seeing their skin, 47% avoiding having sex, and 43% avoiding having intimate relationships [Figure 5]. Overall, 89% of patients had at least one coping strategy (the majority being talking to friends and family [52%], exercise/sport [37%], patient support groups [36%], or using food as comfort [32%]) to manage their psoriasis. On average, patients reported spending 3 h a month online researching their condition, using a variety of resources including online medical websites and health magazines, Google, and patient organization websites.
|Figure 5: Proportion of patients whose personal relationships were affected because of psoriasis|
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Overall, 96% of patients used alternative methods or medicines to obtain relief from their symptoms. These included vaseline (75%), UV therapy (51%), vitamins (42%), coal tar (36%), fish oil (31%), and olive oil/vegetable oil (25%). Patients who had not achieved clear/almost clear skin believed that doing a different kind of activities would improve their ability to participate in a range of life activities [Figure 6]. The average expenditure (TWD) by patients with psoriasis per month ranged from TWD 689 to TWD 3341 for healthcare, prescriptions, doctors' fees, alternative practitioners, dietician, complementary medicines, cream, lotions, make-up, special clothing, and travel. TWD per year on holidays, retreats and thermal bath was TWD 10,357.
|Figure 6: Activities patients would look forward to, when they achieved clear/almost clear skin|
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| Discussion|| |
The Clear about psoriasis survey was a worldwide survey conducted without the bias of a specific clinic or geographical region to seek reasons why patients find their disease and treatment burdensome. This report discusses how psoriasis affects the life of patients with psoriasis from Taiwan and their perceptions about their treatment. The most comparative data for Taiwan and global population are given in [Table 2].
|Table 2: Comparative data of Taiwan and global patients who participated in the survey|
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The proportion of male respondents was high in Taiwan population compared with the global population (56% vs. 45%), and the mean age was 41-year-old compared with 43-year-old in the global population. About 70% of respondents were employed in the Taiwan population compared with 67% in the global population. In addition, a high mean PASI score of 17.1 in Taiwan respondents compared with global respondents (14.3) was indicative of a lack of awareness about psoriasis and available treatments among the Taiwanese population. In this survey, PASI score was patient-reported and not assessed by a physician. This could be one of the reasons for a high PASI score, as patients tend to overestimate their body surface area involvement and may not align with the criteria applied by physicians. The majority of the patients could not recall their PASI scores; this might be because they never noticed or stored the details in their mind or not willing to put an effort in remembering those episodes or patient may not be aware of the details of PASI score. The psoriasis diagnosis was confirmed by Dermatologist in more than 86% of the respondents.
When asked, “Does your current treatment completely clear or almost clear your skin of psoriasis?,” 77% of patients responded that they did not achieve clear/almost clear skin with their current treatment, and about 53% believed that clear skin is not achievable. The proportion of patients achieving clear/almost clear skin in comparison was 79% and 63%, respectively, in the Taiwanese versus global study population. Despite not achieving clear/almost clear skin, the respondents did not feel comfortable speaking with their clinicians about their treatment goals. These findings suggest a lack of awareness of available treatment options and achievable outcomes among psoriasis patients in Taiwan, a finding that has been highlighted previously.,,,,, Alternatively, it may be due to the paternal doctor–patient relationship in clinical practice that patients are passive receivers of the treatment choices and believe physicians will provide the best treatment for their disease.
The proportion of respondents who were satisfied with their treatment was lower in the Taiwanese population compared with the global population (35% vs. 56%), and the respondents who were dissatisfied was similar between the Taiwanese and global population (19% vs. 20%). The most common reason for not being satisfied with their current treatment was treatment failure and not achieving clear skin. These findings indicate that psoriasis care is not working well for respondents from Taiwan, and there is a need to involve patients in the mutual treatment plan and treat patients more aggressively.,, The main treatment goal was relief of itching for the majority (60%) of Taiwanese respondents versus 42% globally.
Among patients who achieved clear/almost clear skin, 21% of Taiwanese patients received a treatment that led to clear skin in <1 year, which was similar to that reported in global patients (28%). A substantial proportion (32%) of Taiwanese patients had to wait >5 years to receive a treatment that led to clear skin. As observed in the global study population, psoriasis had a profound effect on daily life and relationships in the Taiwanese respondents. The most bothering symptom was itching for Taiwanese patients. Discrimination or humiliation was reported by 96% of Taiwanese respondents compared with 84% of global respondents. More than half of the Taiwanese respondents (56%) felt that their psoriasis had influenced past or current relationships compared with 43% of global respondents. Psoriasis affected the work life of 51% and 54% of Taiwanese and global respondents, respectively. A similar proportion of Taiwanese and global respondents (39% and 41%, respectively) took at least 1 day off work in the previous 6 months because of psoriasis. This indicates that quality of life was severely affected, impacting their personal and professional relationship, and these findings were consistent with previous reports.,, Patients also reported spending substantial amounts of time researching their condition and various coping strategies. On achieving clear/almost clear skin, patients looked forward to activities such as swimming, lying on the beach, and going to a hairdresser, etc.
The main limitations of this survey include potential bias resulting from respondents' self-selection, a relatively small sample population, and the possibility of inaccurate understanding/interpretation/translation of the survey questions and disease severity by the respondents. Treatment efficacy was self-reported by the respondents. No definition of clear skin was given to the patients, and hence patient understanding of clear/almost clear skin may not be aligned with the definition accepted by clinicians, i.e., PASI 90. Despite these limitations, this report highlights patients' perceptions of achieving clear/almost clear skin that are specific to Taiwan.
The survey emphasizes the fact that treatment satisfaction levels of Taiwanese patients remain suboptimal, and the negative impact of the disease on quality of life remains high. Data from the survey highlight the need to support patients by educating and empowering them to set goals with their health-care practitioners to achieve clear skin. Dermatologists should have considerable knowledge about the different degrees of emotions experienced by each individual patient, and the associated factors, to provide the most appropriate treatment.
The authors would like to thank Rukaiyya Khan, PhD, of Novartis Healthcare Pvt. Ltd. Hyderabad, India, for providing medical writing support/editorial support, which was funded by Novartis, Taiwan, in accordance with Good Publication Practice (GPP3) guidelines (http://www.ismpp.org/gpp3).
Financial support and sponsorship
Conflicts of interest
Yu-Huei Huang conducted clinical trials or received honoraria as a consultant or speaker for AbbVie, Celgene, Eli-Lilly, Galderma, Janssen-Cilag Pharmaceutical, Novartis and Pfizer. Tsu-Man Chiu, Ji-Chen Ho, Chih-Chiang Chen, Rosaline Chung-Yee Hui, Po-Ju Lai have no conflict of interests. Tsen-Fang Tsai has conducted clinical trials or received honoraria for serving as a consultant or speaker for Abbvie, Allergan, Boehringer Ingelheim, Celgene, Eli-Lilly, Galderma, GSK, Janssen-Cilag, Leo Pharma, Merck-Serono, MSD, Novartis International AG, Pfizer Inc.
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[Figure 1], [Figure 2], [Figure 3], [Figure 4], [Figure 5], [Figure 6]
[Table 1], [Table 2]
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