Journal of Dermatological Treatment

ISSN: 0954-6634 (Print) 1471-1753 (Online) Journal homepage: http://www.tandfonline.com/loi/ijdt20

Treatment goals in psoriasis from a patient

perspective: a qualitative study

Tessa A. Kouwenhoven, Jeroen A.M. van der Ploeg & Peter C.M. van de
Kerkhof

To cite this article: Tessa A. Kouwenhoven, Jeroen A.M. van der Ploeg & Peter C.M. van de
Kerkhof (2018): Treatment goals in psoriasis from a patient perspective: a qualitative study, Journal
of Dermatological Treatment, DOI: 10.1080/09546634.2018.1544408

To link to this article: https://doi.org/10.1080/09546634.2018.1544408

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Treatment goals in psoriasis from a patient perspective: a qualitative study

Tessa A. Kouwenhoven*, MD; Jeroen A.M. van der Ploeg, MD; Peter C.M. van de Kerkhof,

MD, PhD

Department of Dermatology, Radboud University Medical Center, Nijmegen, the Netherlands

*
Corresponding author: Tessa Kouwenhoven, Radboud University Medical Center,

Department of Dermatology, PO Box 9101, 6500 HB Nijmegen, the Netherlands; Telephone:

+31-24-3610265; Fax: +31-24-3635122; E-mail: Tessa.Kouwenhoven@radboudumc.nl

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Abstract

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Background: Psoriasis is a chronic inflammatory skin disorder with marked impact on

quality of life. In view of the well-recognized need to integrate the patient perspective in

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psoriasis care, treatment goals which originate entirely from the experiences of the patients
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are of utmost importance.
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Objective: To explore treatment goals in patients with psoriasis that originate entirely from
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the patient perspective.

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Methods: Data was generated using face-to-face in-depth interviews with 15 Dutch psoriasis
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patients, which were analysed using template analysis resulting in 2 first-level, 10 second-

level and 14 third-level themes.

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Results: A wide variety of treatment goals was reported. Almost all patients reported their

‘ultimate’ treatment goal would be achieving total skin clearance. Barriers in achieving

treatment goals included the fact that psoriasis is a chronic disease with no cure available,
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lack of effectiveness of current treatment options and side effects of treatments of which the

treatment effect does not compensate.

Conclusion: There is a great variety and inter-individual difference in treatment goals.

Therefore, we recommend to define individualized patient-defined treatment goals, as every

patient with psoriasis requires a tailor made treatment program.

Key words: psoriasis, therapeutics, treatment goal, patient-centered care

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Introduction

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Psoriasis is a chronic inflammatory skin disease with an estimated prevalence of 2-4% in the

Western population.[1] It has a substantial impact on both psychical and psychological quality

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of life.[2] Over the last years, various new therapeutic options have become available for the
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treatment of psoriasis. In order to guide physicians with treatment choices in daily practice,

several evidence-based guidelines and treatments standards were introduced.[3, 4, 5, 6] In the

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majority of these publications, treatment goals were based on changes in clinical outcome
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measures, such as Psoriasis Area and Severity Index (PASI), and patient-reported outcome

measures (PROs). For example in the European consensus, treatment success was defined as
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an improvement in PASI by at least 75% (PASI-75) or when a Dermatology Life Quality

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Index (DLQI) score equal or lower than 5 is reached in patients with a PASI improvement of

between 50% and 75%.[4]

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Even though well-defined treatment goals can help physicians in their care of patients with

psoriasis, they are based on outcome measures only, suggesting that changes measured by

PASI and DLQI are of equal importance in all psoriasis patients. However, previous research

showed a wide variety in patient reported treatment goals, with a need for an individual
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approach.[7, 8] In current patient-centred care, insight in treatment goals which originate

entirely from the patient perspective is of utmost importance. Therefore, treatment goals

warrant further in-depth exploration, especially as previous publications on patient relevant

treatment goals were mainly based on surveys or questionnaires, such as the Patient Benefit

Index (PBI).[7, 9, 10, 11]

Consequently, we used a qualitative approach to analyze treatment goals in adult patients with

psoriasis. We aimed to explore patient relevant treatment goals in adult patients with

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psoriasis, and possible barriers in achieving these goals.

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Methods

Study design us
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Face-to-face, in-depth, semi-structured qualitative interviews were conducted at the Radboud
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University Medical Center, Nijmegen, the Netherlands, a tertiary referral centre. Ethical

approval was granted by the local medical ethics committee.

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Participant selection
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Adult patients (>18 years of age) with psoriasis attending our outpatient clinic were asked to
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participate by a telephone call from the second author, who also performed the individual
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interviews. In addition, patients were recruited by online advertisement on the website of the

Dutch Psoriasis Association, however, this resulted in the recruitment of only one participant

(F1). We used a purposive sampling approach in order to obtain a broad representation of

patients with respect to age, gender, duration of psoriasis and medical treatment. Enrolment in

the study continued until the point of data saturation, defined as a point was reached where all

sections of text relevant to the research question were assigned to a theme, no new themes
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emerged from analysis and the template represented all themes in the data.[12, 13] Data

saturation was obtained after interviews with 15 participants (Table 1). Mean age of

participants (8 male; 53.3%) was 44.0 ± 18 years, with a mean age of 28.2 ± 19.1 at diagnosis

of psoriasis.

Data collection

Data collection took place between March and May 2017. All participants gave written

informed consent to take part in the study. The interviews lasted for an average of 34 minutes

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and were all conducted in person. The interviewer used a topic guide in order to cover all

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topics and issues of interest. The initial version of this topic guide was developed through

review of relevant literature [7, 9, 10, 11, 14] and discussion with both clinicians and a patient

member of the Dutch Psoriasis Association,

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and was refined over the course over the study as new topics of interest emerged. Interviews

opened by asking participants what it is like to live with psoriasis. Then, the interviews
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continued by asking about treatment goals, including what patients aim to achieve with their
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current treatment, what their ultimate treatment goal would be and barriers in achieving these

goals. At the end of each interview, participants were asked if they had any comments or
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additional topics not covered in the interview. All interviews were audio-recorded and
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transcribed verbatim in Dutch by the author conducting the interviews. ID numbers were

assigned to each participant.

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Analysis

Data was analyzed using template analysis (TA), a way of thematically analyzing data by

creating a coding template.[12, 13] Within this template, codes are ordered hierarchically,

with the highest-code levels corresponding to broad overarching themes, and the lowest code
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levels representing narrow and more specific themes. TA was selected as it provides a

systematic and clear approach, however, still flexible compared to other techniques with

fewer specified procedures.[15] Our initial template was constructed after coding of the first

three transcripts. This template was applied to the remaining transcripts in sets of three

transcripts, and was refined by inserting themes, deleting themes and changing the scope of

themes. All transcripts were coded by two researchers independently in order to minimize

subjectivity, using Atlas.ti V7.1.5 software (Atlas.ti Scientific Software Development

Company, GmbH, Berlin, Germany). The final template is displayed in Table 2.

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Results

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Analysis resulted in 2 first-level themes: treatment goals and barriers in achieving treatment

goals. In addition, 10 second-level and 14 third-level themes were identified (Tables 2-4).
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Theme I: Treatment goals

An overview of all 7 second-level themes and 14 third-level themes regarding treatment goals
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including representative quotes are displayed in Table 3. A common view amongst patients

was the wish to be free of psoriasis, also described as ‘being cured of psoriasis’ or ‘having
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total skin clearance’, which was reported by 14 out of 15 participating patients. Two of these
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patients stated that in their opinion all psoriasis patients share this treatment goal (F2, 59
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years; M5, 64 years, Table 3). Patients reported that if they could be free of psoriasis, they

would feel happier, feel better about themselves, feel more confident and that they would be

‘like everybody else’ (M7, 18 years, Table 3).

Minimizing physical psoriasis symptoms were also reported by nearly all patients, reporting

goals as ‘to be free of itching’, ‘to be free of pain’ or ‘to be free of scaling’. Treatment goals
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on reducing itch were reported most often. One patient had no need to be free of psoriasis, as

long as she was free of itch (F1, 41 years). Patients also described the goal to feel more

energetic, as psoriasis was ‘literally consuming energy’ (M4, 48 years, Table 3). Furthermore,

the goal to have no visible psoriasis lesions was appointed by majority of patients, even

referring to the visibility as ‘the biggest frustration of psoriasis’ (M1, 38 years, Table 3).

Patients explained that they rather had psoriasis lesions on locations that are easy to cover,

such as their legs or torso, than on visible locations, such as their face and hands. Some

patients reported about their different approaches on hiding psoriasis, such as with their

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clothing, hairstyle or artificial nails, stating that it would be a relief not to think about masking

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their psoriasis. When it was not possible to hide visible lesions, some participants started to

avoid certain locations, such as the gym (M1, 38 years, Table 3) or swimming pool.

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Another reported treatment goal was to have less influence of psoriasis on daily activities,

such as working, studying or sports. They aimed to do ‘all normal things’, without being
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worried about their psoriasis (M5, 64 years, Table 3). Patients also preferred to be less
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bothered by their treatment, and would like to have a convenient, less time-consuming and

safe treatment. One patient stated that her therapy reminded her of having psoriasis, and
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therefore would like to spend least time on it as possible (F5, 69 years).

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Several patients mentioned the wish to have less influence of psoriasis on their social life, and
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described they wanted to ‘be normal’ and ‘to be accepted by other people’ (F3, 23 years,

Table 3). Also having more social contacts and having less influence of psoriasis on

relationships were brought up as treatment goals. One patient mentioned he had limited social

contacts for over a year because of his psoriasis (M3, 43 years, Table 3). Also having less

depressive feelings, thinking less of (an increase of) psoriasis and having more self-esteem
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were mentioned as treatment goals, incorporated in the theme ‘to improve emotional

functioning’. The unpredictable course of psoriasis can be frustrating for patients, as they

‘never know what will happen in the next few days’ (M8, 37 years, Table 3).

Theme II: Barriers in achieving treatment goals

When reporting current treatment goals, several patients also mentioned their goals could not

be achieved yet, as there are still several barriers in achieving these goals (Table 4).

Especially being free or cured of psoriasis is not a realistic goal yet according to the

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participants in our study. They described that psoriasis is a chronic skin condition with no

cure, and that they therefore just ‘have to live with it’. Others reported they still hope a cure

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for psoriasis will be found, as ‘latest developments are going quite fast’ (M1, 38 years). Some

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patients felt they could not achieve their goals as their current treatment was not effective (F1,
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40 years, Table 4). Others felt that the side effects were too substantial, or could not

compensate for the therapeutic effect (F4, 41 years, Table 4). This could lead to difficult
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choices between effective treatments or side effects, as displayed in this quote by F1 (40

years, Table 4): “Then I think, should I continue using it? To ensure all lesions will be gone
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completely? Nah, I’m not convinced, feeling tired all the time. Just to look beautiful.”
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Discussion

This qualitative study focused on treatment goals in adult patients with psoriasis, and on
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barriers in achieving these goals. Based on the participants in our study, most psoriasis

patients aim to be free or cured of psoriasis, also referred to as their ‘ultimate treatment goal’

or ‘the dream’, which is in line with a previous qualitative study.[8] When patients with

moderate to severe psoriasis (N=3066), analyzed in a cross-sectional multicenter study, were

asked about the importance of several treatment goals, 94.5% ranked skin healing as ‘very
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important’.[7] In addition, it was previously shown in observational and clinical studies that

achieving skin clearance (PASI 100 or Physician Global Assessment (PGA) score 0) is

clinically meaningful, as patients reported fewer symptoms and signs of psoriasis and less

impact on health-related quality of life measured by DLQI.[16, 17, 18, 19] It is therefore

important for physicians to realize this is the ultimate treatment goal of psoriasis patients,

especially as new psoriasis therapies have increased the ability to achieve total skin clearance.

In an Italian survey study (N=359) reporting patients’ expectations on their current therapy,

the majority (54.9%) reported relief of symptoms, including itch, as their main goal, followed

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by decreasing desquamation (12.0%) and improving self-esteem (11.1%).[11] In our study,

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minimizing physical psoriasis symptoms was also reported by nearly all patients, with most of

them reporting the aim to reduce itch. One patient even thought it was more important to be

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free of itch instead of being free of psoriasis (F1, 40 years, Table 3). This was also highlighted
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in a qualitative study exploring adolescents (N=18) experiences in living with psoriasis, as

several adolescents reported that their itch caused considerable impairment.[20]

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Also consistent with literature, we found a wide range of individual patient-reported treatment

goals, including the wish to be free of physical symptoms, to have no visible psoriasis lesions,
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having no influence of psoriasis on daily life, to be less bothered by treatment of psoriasis, to

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have less impact of psoriasis on social life and to improve emotional functioning .[7, 8]

Therefore, physicians should ask their patients about individual goals, instead of using
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previous defined treatment goals measured by PASI or DLQI only, in order to provide

personalized care for psoriasis patients.

The aim to have no visible psoriasis lesions was also reported by almost all patients, including

wishes not have to hide their lesions anymore, not have to avoid certain locations as the
 9

swimming pool and to have less comments of other people. Several patients mentioned that

little is known about psoriasis, and they often have to explain what psoriasis is and that it is

not contagious. This stigmatization carried a significant psychological burden on patients,

which even leads to social isolation for one participant in our study (M3, 43 years, Table 3).

Several barriers in achieving treatment goals were mentioned by the participants in our study,

as they thought some of their goals are not achievable yet. Some patients mentioned the wish

for a cure of psoriasis, with different opinions on whether this will be possible in the future.

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Also side effects are important in decision-making, as patient feel the treatment effect should

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compensate for the side effects (F1, 41 years, Table 4). In current patient-centred care, it is

important to realize the patient and clinician are ideally both partners in the treatment

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selection process, where the physician supports the patient in making thought-out decisions,
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and the patient defines the treatment need to a large extend.
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A limitation of this study is that it took place in an tertiary referral centre for psoriasis where
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mostly moderate to severe psoriasis patients are seen. And as this is a qualitative study, it is

explorative in nature and results might be hard to extrapolate to a bigger population.

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However, we think we uncovered and confirmed some key treatments goals for therapy
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according to patients with psoriasis.

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In conclusion, participants in our study reported a wide range in patient reported treatment

goals. However, they shared their ‘ultimate’ treatment goal, which is to achieve total skin

clearance. Given current treatment options, this goal can be feasible in daily practice and

dermatologists have to be ambitious to achieve this goal. We recommend that physicians

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explore patient-reported treatment goals in patients, in order to provide a tailor-made

treatment regime. The present approach with seven subthemes may help to realise this.

Declaration of interest statement

T.A. Kouwenhoven carries out clinical trials for AbbVie, Eli Lilly, Janssen and Leo Pharma.

J.A.M. an der Ploeg: none declared. PCM van de Kerkhof has carried out clinical trials for

Centocor, Pfizer, Schering Plough, AbbVie, Philips Lighting, Novartis, GSK, Eli Lilly,

Amgen and Almirall, and has consultancy services for Schering Plough, Celgene, Centocor,

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Almirall, Pfizer, AbbVie, Actelion, Galderma, Novartis, Janssen, Sandoz, Eli Lilly, Amgen

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and Leo Pharma. All funding is not personal but goes to the independent research fund of the

department of dermatology of Radboud university medical centre Nijmegen, the Netherlands.

Funding
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none

References
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PMCPMC4762027.
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2. de Korte J, Sprangers MA, Mombers FM, et al. Quality of life in patients with psoriasis: a
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3. Nast A, Kopp IB, Augustin M, et al. [S3-Guidelines for the therapy of psoriasis vulgaris]. J
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26688112.
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8. Khoury LR, Skov L, Moller T. Facing the dilemma of patient-centred psoriasis care: a
qualitative study identifying patient needs in dermatological outpatient clinics. Br J Dermatol.
2016 Dec 29. doi: 10.1111/bjd.15292. PubMed PMID: 28032892.
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research: Core methods and current challenges. London, UK: Sage; 2012. p. 426-450.

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17. Takeshita J, Wang S, Shin DB, et al. Comparative effectiveness of less commonly used
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19. Viswanathan HN, Chau D, Milmont CE, et al. Total skin clearance results in improvements in
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20. Randa H, Lomholt JJ, Skov L, et al. Health-related quality of life in adolescents with psoriasis:
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29315491.

Table 1. Demographic information

Demographics No. (%) of included

participants (N=15)
Sex 8 (53.3%)
Male 7 (46.7%)
Female
Age (years) 44.0 ± 18.0
Mean ± SD 18 – 71
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Range
Age at diagnosis of psoriasis (years) 28.2 ± 19.1
Mean ± SD 5 – 68
Range
Psoriatic Arthritis (PsA) 4 (26.7%)
Mean age at diagnosis PsA ± SD (years) 35.5 ± 14.6
Range (years) 22 – 56
Current psoriasis treatment 3 (20.0%)
Topical 3 (20.0%)
Phototherapy 5 (33.3%)
Systemic 4 (26.7%)
Biological
Table 2. Final template: first, second and third-level theme codes

First-level theme Second-level theme Third-level theme

Treatment goals ‘To be free of psoriasis’
‘To be free of physical symptoms’ ‘To be free of itch’
‘To be free of pain’

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‘To be free of cracking/bleeding’

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‘To be free of scaling’
‘To have more energy’
‘To have no visible psoriasis

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lesions’
‘To have no influence of psoriasis ‘To have no influence of psoriasis

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on my daily life’ on daily (ADL) activities’
‘To have no influence of psoriasis
on work or study’
‘To be able to do sports’
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‘To be less bothered by treatment
of psoriasis’
‘To have less impact of psoriasis ‘To be accepted by other people’
on my social life’ ‘Be able to have more contact with
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other people’
‘To have less influence of psoriasis
in relationships’
‘To improve emotional ‘To feel less depressive’
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functioning’ ‘To think less about (an increase

of) psoriasis’
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‘To have more self esteem’

Barriers in achieving treatment ‘There is no cure for psoriasis’
goals ‘Treatment is not effective’
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‘The side effects are too heavy /

not compensated by treatment
effect’
Table 3. Theme I: Treatment goals, including 7 second-level, 14 third-level themes and representative quotes.
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Second-level theme Third-level theme Representative quotation

‘To be free of psoriasis’ F2, 59y: “I think I want what
everybody wants: to be free of
psoriasis”
F3, 23y: “Eh, well, if it were
completely gone, that would of course
be the best. Yes, that would be great if
it were all clear, even just for a little
while.”
M5, 64y: “Yes, what do we all want?
Haha, well that. I think [I want] to be
psoriasis-free at last.”
M7, 18y: “I want to be like everybody
else, to not have psoriasis, to have
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normal skin again, with normal color,

‘To be free of physical symptoms’
‘To be free of itch’
‘To be free of pain’
‘To be free of cracking/bleeding’
‘To be free of scaling’
which wouldn’t be commented on.”
F4, 41y: “That it reduces the itching.
Yes, itching, that is the main issue.
Itching is the worst thing about
psoriasis.”
F6, 19y: “[…], then it is severe if it
really starts to hurt. Or burn. Well then
it is really very red and swollen and…,
then I’m so done with it that it sort of
started to bleed a bit. That’s very
severe, but it thankfully doesn't happen
so often anymore because of the
medication.”
F2, 59y: “[…], well, if it were to
worsen on my elbows. It will get very
dry, it will crack, rupture, and start to
bleed, I’ll get fissures and those heal
very poorly.”
F7, 30 years: “Other people may be

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disgusted when it’s covered with

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flakes. I don't like it either when I see
them in my house.”
‘To have more energy’ M3, 43y: “It was exhausting, it got so

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bad that it was literally consuming me.
I didn’t notice it at first, because I’m
usually tired, and I thought that, maybe
I just didn’t sleep well. Until, finally, it

‘To have no visible psoriasis lesions’ us was diagnosed how bad my psoriasis
had gotten.”
F5, 69y: “Living with psoriasis is
horrible because it is so visible.”
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M1, 38y: “I don’t like having it and it
bothers me. For me visibility has been
the biggest frustration by far. […] I
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haven’t been to a gym for like three

months. Mainly because I can’t cover
the spots on my arms while wearing a
T-shirt. I can cover my legs with
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sweatpants, but I’m not going to wear a

sweater while working out.”
‘To have no influence of psoriasis on ‘To have less influence of psoriasis on F1, 40y: “[…] so I can do all my
my daily life’ daily (ADL) activities’ normal things and that it doesn’t hurt.”
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F2, 59y: “I suddenly got spots on my

hands, at which point I wanted to start
using methotrexate. I felt that if this
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would get worse, I would stop

functioning in daily life. I realized in
that moment that I really couldn’t
function if my hands were affected.
Maybe somebody else can, but not
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‘To have less influence of psoriasis on
work or study’
‘To be able to do sports’
‘To be less bothered by treatment of
me.”
M4, 48y: “I’m a truck driver, and after
sitting in my truck all day, there are
flakes all around me. [..] When I’m
transporting fruit and vegetables, I
don’t like to apply the ointment
because I might have to touch the
vegetables.”
M5, 64 years: “[…] if I didn’t also
have arthritis, I would want to play
sports. I want to be able to do all the
things I could have done eight years
ago [before I was diagnosed with
psoriatic arthritis].”
M6, 61y: “I was disappointed by
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psoriasis’ having to apply the ointment over and

over again. It really fed me up. It takes
a lot of time.”

F1, 40y: “I don’t want to apply

‘To have less influence of psoriasis on
my social life’
‘To be accepted by other people’
‘Be able to have more contact with
other people’
ointments anymore. I find it hard to
apply them as prescribed. What do I
have to do? Apply one for four days…
[..] And then, which one?”
F3, 23y: “When people ask me about
psoriasis and I tell them, they say
“That’s gross” or they ask “Is it is
contagious?” Contagious, really? Is
that the first thing on their minds? I
have psoriasis through no fault of my
own, but people still judge me for it,
that is the worst part.”
M3, 43y: “I have been hiding myself
for a year, from anyone and from the
outside world. I was living in my own

t
bubble. […] I didn’t invite people over

ip
either because I thought I would have
to clean up all the flakes. So nobody
visited me. My home didn’t feel like

‘To have less influence of psoriasis in
relationships’
cr
home, it was just the place where I
slept, like a den.”
M1, 38y: “When you are in a long-

us
term relationship, as I have been,
you’re an open book and know each
other well. But when you meet
someone new you don’t know how it
will turn out. I’m quite insecure about
an
that. (..) It’s [psoriasis] not pretty, it
makes you less attractive.”

F1, 40y: “We don’t make love so often

M

anymore because we don’t feel like it

at the moment. I think we rather wait
until the symptoms get less bad. We’ll
have to see. It’s just, it’s a barrier.”
ed

‘To improve emotional functioning’ ‘To feel less depressive’
pt
F5, 69y: “[…] I felt miserable. I stayed
at home, I didn’t go anywhere. I was
just walking around in my old jogging
clothes. I was very sad, sometimes I

cried, even more than I did when I had

cancer. That’s how impactful it was.”
‘To think less about (an increase of ) M8, 37y: “It’s unpredictable, you
psoriasis’ never know what will happen in the
ce

next few days. Maybe an outbreak

starts one day, you know, some spots
on the forearm, and the next day it gets
much worse.”
Ac

‘To have more self esteem’ F6, 19: I don’t want to be ashamed
anymore, I want to be able to run
around in shorts. I hope I can do that
this summer, though winter is my
favorite season.
Table 4. Barriers in achieving treatment goals; including second-level and third-level themes and representative
quotations.

Second-level theme Third-level theme Representative quotation

‘There is no cure for psoriasis’ F5, 69y: “When I had breast cancer, I
had the feeling curing was possible.
But now I have the feeling there’s
nothing to cure. ”
‘Treatment is not effective’ F1, 40y: “You don’t want to use these
 15

ointments for the rest of my life, at

‘The side effects are too heavy / not
compensated by treatment effect’
least I don’t. It won’t work anyway.”
F4, 41y: “The effects it [methotrexate]
can have on your internal organs, I
think those are quite severe side-
effects. I had high blood pressure when
I was using cyclosporine. That’s a
major side effect that I rather not have.
I’ll stick with ointment and
phototherapy.”
F1, 40y: “Then I think, should I
continue using it [fumaric acid]? To
ensure all lesions will be gone
completely? Nah, I’m not convinced,
feeling tired all the time.[…] Just to
look beautiful.”

t
ip
cr
us
an
M
ed
pt
ce
Ac