Patients’ Preferences Regarding Modes of Systemic Psoriasis Treatment – A Qualitative Study

Abstract

Background

Treatment with pathogenesis-directed biologics and oral systemic drugs have made complete clearance of psoriasis a realistic expectation for many patients with psoriasis. Patients’ preferences among these treatments varies.

Objective

To understand factors impacting psoriasis patients’preferences for injection vs oral medication.

Methods

Psoriasis patients who receive systemic psoriasis treatment were asked to participate in a semi-structured interview. Sample size was based on achieving saturation with equal number of patients preferring oral vs injectable medications to ensure equal representation of both groups. Qualitative analysis was performed to interpret the results.

Results

Twenty-two patients participated in the study, 12 males and 10 females. Ten patients were receiving oral medication (apremilast or methotrexate) and 12 patients were receiving injectables (guselkumab, adalimumab, risankizumab, secukinumab, ixekizumab, or tildrakizumab) due to self-reported preference. Five themes resulted from the analysis: patients receiving injectables more frequently discussed the positive impact of the medication on quality of life compared to patients on oral medication; fear of side effects, particularly fear of immunosuppression, is associated with injection medications; avoidance of needles drives patients away from injection medication and towards oral systemic medication; patients prioritize convenience when selecting systemic therapy, though the definition of convenience is subject to perception; and patients value the medication recommendation of the physician, regardless of the route of administration.

Conclusion

Improving medication adherence and disease outcomes through individualized treatment plans, with an emphasis on patients’ preferences using a shared decision-making approach, may be helpful.

Introduction

Psoriasis is a chronic immune-mediated disease characterized by erythematous scaly plaques, but different phenotypes exist. ¹ The disease has been reported in up to 4% of the United States population and has a significant negative impact on patients’ quality of life. ² Treatments include topical medications, phototherapy, and systemic immunomodulating agents. ¹ Treatment with pathogenesis-directed biologics and oral drugs have now made complete clearance of diseased skin a realistic expectation for many patients. ³ However, non-adherence to treatment is a major barrier to patients’ achieving clear skin. ³ Adherence may be impacted by patient preferences, the physician-patient relationship, and cost. ³ To improve adherence, patients’ preferences must be taken into account. Previous studies on patients’ preferred mode of systemic therapy have been quantitatively assessed, but few have elicited detailed qualitative information on patients’ preferences. To understand psoriasis patients’ preferences for systemic medication, we performed an in-depth qualitative analysis.

Materials and Methods

Qualitative Approach and Research Paradigm

The thematic analysis was performed using the Braun and Clarke approach and is being reported according to the Standards for Reporting Qualitative Research.^4,5 All data were analyzed using an inductive approach, at a latent level, in a realist/essentialist paradigm, where underlying ideologies were applied to explicit text without a preconceived framework.

Researcher Characteristics and Reflexivity

Three researchers (M.Z., J.M., and E.P.) conducted the interviews under the remote guidance of Bettina Trettin, Ph.D, at the University of Southern Denmark, Department of Clinical Research. M.Z. is a Doctor of Medicine working as a dermatology research fellow. J.M. and E.P. are graduate students working towards their degrees in medicine. Despite similar education backgrounds, the researchers represent three different institutions located in distinct geographic regions. Additionally, no researcher had a personal relationship with participants or psoriasis patients receiving systemic medication.

Context

The study was conducted at Atrium Health Wake Forest Baptist, Department of Dermatology, an academic institution that serves as a tertiary referral center for psoriasis and skin treatment. Psoriasis patients presenting for treatment receive one-on-one treatment education by a board certified dermatologist (S.F.). Medication education consists of a brief discussion describing topical verse systemic treatments and systemic options are additionally reviewed for method of delivery (oral verse injection), regimen (daily verse weekly verse monthly), and risk of side effects.

Sampling Strategy

Psoriasis patients who receive systemic psoriasis treatment were asked to participate. This included patients on either injection or oral medication, with at least six patients preferring oral treatment. The decision to select six oral treatment patients was made given the study was designed to interview 12 patients total, or until there was an equal representation of patients who preferred injection and oral systemic medication, respectively. This is supported by previous studies recommending 9 to 17 interviews to achieve saturation, where subsequent interviews do not generate new themes. ⁶

Ethical Issues Pertaining to Human Subjects

The study was approved by the Wake Forest University Health Sciences Institutional Review Board (IRB00087853), consistent with the principles of the Declaration of Helsinki. ⁷ Written informed signed consent was obtained from individuals participating in interviews in-person. To identify participants eligible for phone interviews, a waiver of Health Insurance Portability and Accountability Act (HIPAA) authorization and a waiver of signed consent was attained.

Data Collection Methods

Patient demographics and response to questions were recorded at the single interview. Interviews were performed one-on-one between the researcher and the participant in-person or by telephone. On average, interviews lasted 30 minutes and were conducted from September 26^th, 2022, to February 7^th, 2023. Interview transcription, coding, and thematic analysis using an iterative process was performed from February 14^th, 2023 to March 27^th, 2023, while triangulation of sources was performed up until April 12^th, 2023 in preparation for publication.

Data Collection Instruments and Technologies

Patients participated in a semi-structured interview (Appendix 1). The interview consisted of general questions on current psoriasis treatment and questions separated into four categories based on previous systemic treatments: (i) if using or had used an injectable medication for psoriasis, (ii) if had not used an injectable medication for psoriasis, (iii) if using or had used an oral medication for psoriasis, and (iv) if never used an oral medication for psoriasis. Interviews were audio recorded on Microsoft Teams version 1.5 and transcribed verbatim on Microsoft Word.

Data Processing and Analysis

For verification of data integrity, transcriptions were read along audio recordings. Then, patient identifiable information was removed from all transcriptions, documents password protected to protect participant privacy, and files uploaded to Delve qualitative data analysis software for analysis. The transcripts were (re)read and codes were created. Codes were organized into themes and themes reviewed for subthemes. Final themes were named, defined, and mapped.

Techniques to Enhance Trustworthiness

Interviews were (re)read and coded by two members of the research team (M.Z. and J.M.). Researchers read the interviews independently and met multiple times throughout the coding process. Themes and subthemes were reviewed by all interviewers (M.Z., J.M., and E.P.) and discussed to provide different perspectives and ensure accurate representation of the data. For respondent validation, patients’ electronic medical records were also reviewed to confirm their psoriasis treatment.

Results

Twenty-two patients participated in the study, there were 12 males and 10 females (Table 1). Median (range) age was 56 (9 – 76) years and most were white (86%) although there were 3 Black or African American participants. At the time of the interview, 12 patients were receiving injectable systemic psoriasis treatment and 10 patients were receiving oral systemic psoriasis treatment due to self-reported preference. Four (33%) of the 12 injection medication patients and 4 (40%) of the 10 oral medication patients had a history of receiving oral and injection psoriasis treatments in the past, respectively. Medications at the time of the interview, in decreasing order of prevalence, included apremilast, methotrexate, guselkumab, adalimumab, risankizumab, secukinumab, ixekizumab, and tildrakizumab. Sixteen (73%) of 22 participants had a history of injection medication use, most of which was for diabetes treatment. Six (100%) of the 6 patients with no history of injection medication use were receiving oral psoriasis treatment at the time of the interview. The analysis resulted in five themes on patients’ preferences for systemic psoriasis treatment (Table 2).

Table 1.

Participant Demographic Information.

Age (year)	Race	Sex	Health Insurance	History of injection medication use a
Injection medication preference
70	White	Male	Private	Yes
75	White	Female	Medicare/Medicaid	Yes
40	Black or AA	Male	Medicare/Medicaid	Yes
53	White	Female	Private	Yes
56	White	Female	Medicare/Medicaid	Yes
48	White	Male	Private	Yes
37	White	Male	Medicare/Medicaid	Yes
57	White	Male	Private	Yes
55	White	Male	Medicare/Medicaid	Yes
37	White	Female	Private	Yes
66	White	Female	Medicare/Medicaid	Yes
51	White	Female	Medicare/Medicaid	Yes
Oral medication preference
63	White	Male	Medicare/Medicaid	No
62	White	Female	Private	No
9	White	Male	Medicare/Medicaid	No
45	White	Male	Medicare/Medicaid	Yes
38	White	Male	Private	No
43	White	Male	Private	No
57	White	Male	Medicare/Medicaid	Yes
60	Black or AA	Female	Medicare/Medicaid	Yes
57	White	Female	Private	Yes
76	Black or AA	Female	Medicare/Medicaid	No

^aPatients who had a history of injection medication use received injections for psoriasis, arthritis, or diabetes treatment

Table 2.

Themes Associated With patients’ Preferences for Route of Systemic medication Administration.

The perceived magnitude of benefit and positive impact treatment had on patients’ Quality of Life was greater in patients who received injection medication

“Well, to me, it was the life changer for me. You know, in terms of suppressing the immune system, the other stuff treated the symptoms outward symptoms and did nothing internally.”

“It was life changing. . . there’s as much mental anguish with the physical aspect of psoriasis and for any other skin disease that’s outwardly seen. . .And you internalize that. . .”

“I had gone my whole life putting on oils and creams that don’t really work. They don’t make it stop. They moisturize for 4 hours. So I went through my whole life with no relief at all, except for my nails or brush or comb to scratch. But the shot changed my life.”

“Once I started the injections, within that month, my skin cleared up on the hands. . . I Was able to actually do daily routines without gloves on. . .”

“The shot made me feel human. . .”

Fear of side effects, particularly fear of immunosuppression, is associated with injection systemic medications

“I’ve always resisted taking systemic medications because of the effect on your immune system.”

“I’m afraid of the immune side effects of that injection.”

“I was holding off on injections because of their immune system effects.”

“First and foremost it’s the side effects, but two, is that the you know the inconvenience of having to stick yourself.”

“I chose. . . Because it carried less side effects overall.”

Avoidance of needles drives patients away from injection medication and towards oral systemic medication

“It’s a scary when you’re putting a needle into your leg.”

“Plus that stuff really stung and hurt. I’ve talked to people that have been on the new formula and they say it’s not as bad, but it’s still stings.”

“You know, the whole injecting oneself, I did not enjoy that process. I Had done that. I Was kind of squeamish about it.”

“It (injection) started making my legs sink in. . . On my leg where I was taking the shot. . . it’s not a scar., it just like sunk in.”

“I would get huge bruises and I just didn’t like that.”

The convenience of taking systemic medications motivate patients to use injection and oral systemic medications, respectively

“It’s convenient. . . The pen I mean it’s just you know a flash in and out. . .”

“The injections. . . it’s fast and easy.”

“It’s quick, it’s easy to do it at home, so it’s very convenient and in my case it shipped right to the house.”

“With the pill organizer. . . it’s perfect, I can just look and go oh, I need to take my pills.”

“It doesn’t bother me to take a daily pill, so I thought that that was very convenient. You know, the whole injecting oneself, I did not enjoy that process.”

Patients value the medication recommendation of the physician, regardless of the route of administration

“It was what was recommended by my doctor. . .”

“I chose to use a systemic medication because it was recommended by the doctor.”

“Pretty much whatever the doctor says I do, and I don’t question it. . .”

“It wasn’t my decision. It was her (physician) decision.”

“I’m more concerned about the overall long-term impact with the biologic, but my physician said you needn’t be concerned. . .”

“I would consider anything the doctor wants.”

Patients receiving injectables more frequently discussed the positive impact of the medication on quality of life compared to patients on oral medication. Patients expressed a profound sense of relief associated with disease clearance while receiving injectables. Some patients explained the relief it provided for them physically while others placed more of an emphasis on the impact it had mentally. Multiple patients used the term “life changing” and one went on to explain,

“It was life changing. . . there’s as much mental anguish with the physical aspect of psoriasis and for any other skin disease that’s outwardly seen. . .and you internalize that. . .”

The self-direct impact psoriasis has on patients’ mental health may be particularly impactful in patients’ younger years. One patient explained the mental fatigue he struggled with in adolescence prior to initiating systemic treatment. He says,

“The anxiety, the social feeling of being so different, and of somebody saying you’re contagious. . . You know you’re out on a date of, you take your shirt off. . .and they say ‘wow, what’s wrong with you?’”

However, transitioning to systemic medication, particularly injection medication and the immediate effect it has on disease clearance, eliminates the physical and mental burden of disease. One patient says, “It just gives you more confidence about yourself and I feel more comfortable in my own skin.” Another went as far as to say, “the shot made me feel human. . .”

This same sense of enthusiasm for disease clearance was not obtained in patients who received oral systemic medication. The decision to remain on oral treatment was often made to avoid injection medication. While discussing the impact treatment has on psoriasis severity, one patient says,

“It took away some of the itchiness. . . other than that it never really calmed everything down it. It was mostly itchiness that went away and then some of the plaque buildup went away, but it was still there.”

Fear of side effects, particularly fear of immunosuppression, is associated with injection systemic medications. Many patients discussed fear of side effects with both injection and oral systemic psoriasis treatment. However, fear of immune suppression was only expressed in the context of treatments administered through injection. One patient says,

“I was holding off on injections because of their immune system effects.”

Another patient almost mirrored the former when they say, “I'm afraid of the immune side effects of that injection.”

While fear of immune suppression was the major concern of most patients, side effects of oral medication were also addressed. One patient says, “I believe they carried risk for women if they were going to get pregnant or plan on getting pregnant. I was still being in my early 30s at the time. . .” while another says, “Particularly if you want to go drink a beer, you’re not supposed to drink alcohol on the medication. . . They’re just not compatible.”

Avoidance of needles drives patients away from injection medication and towards oral systemic medication. Patients who preferred oral to injection systemic treatment did so for fear of side effects and avoidance of needles. Refraining from use of needles was related to pain, scarring, and discoloration. Others were simply afraid of the needle themselves, “It’s scary when you’re putting a needle into your leg.”

While all patients who received injection medication administered the treatment themselves, those who preferred oral medication found it difficult to think about doing so, one says,

“You know, the whole injecting oneself, I did not enjoy that process. I had done that. I was kind of squeamish about it.”

When asking patients who do inject the medication themselves to elaborate, almost all said the decision to do so was to avoid being a burden to family or friends at home. Although, most felt comfortable asking medical professionals to inject the medication if needed,

“I wouldn't put anybody through the discomfort is seeing me like this. Unless you were a trained professional.”

While fear of immunosuppression and avoidance of needles were patients’ main deterrents from injection systemic medication, inconveniences were also discussed. Regular lab monitoring, medication refrigeration, and handling “clunky” needles were some of the burdens associated with injection medications.

Patients prioritize convenience when selecting systemic therapy, though the definition of convenience is subject to perception. In addition to the positive impact systemic medication has on psoriasis patients’ quality of life, the decision to receive injection or oral medication was often associated with patient preference of convenience. For both routes of administration, patients cited the dosing schedule as a factor defining convenience. Injections were considered fast and easy for some patients,

“It’s quick, it’s easy to do it at home, so it’s very convenient and in my case it shipped right to the house.”

The convenience of injection medication was often linked to the medication not being a daily occurrence and being one that could be administered from home. However, patients who received oral medication also found it convenient despite the daily task of ingesting medication. This was especially true for patients with a fear of needles in which the alternate systemic medication option was an injection,

“It doesn’t bother me to take a daily pill, so I thought that that was very convenient. You know, the whole injecting oneself, I did not enjoy that process.”

Despite the convenience of systemic psoriasis treatment, most patients still enjoyed the personal agency associated the external application of topical medication to psoriatic plaques. One says, “I really want something that I can apply to the to the psoriasis plaques. See some results.” Another patient expressed a desire to treat the disease from all aspects, saying, “The shot works internally and the cream works outwardly if that makes sense.”

One patient even made the comparison to a blood pressure medication, and the lack of relief associated with taking medication if you can’t see its immediate effect,

“I looked at like someone that takes their blood pressure medication. . . you know, it didn’t seem to make that big of an impact. So, I have the ointment to have something to put on. . .”

Patients value the medication recommendation of the physician, regardless of the route of administration. Regardless of patients’ fears and preferences, almost all ended the interview expressing the importance of the physician to provide recommendations and guide treatment decisions. This was often expressed in absolute terms, with one saying,

“Pretty much whatever the doctor says I do, and I don’t question it. . .”

Another patient spoke similarly, saying, “I would consider anything the doctor wants.”

Medical professionals use their expertise to not only guide clinical decision making, but also to resolve misconceptions and alleviate fears, “I'm more concerned about the overall long-term impact with the biologic, but my physician said you needn't be concerned. . .”

Discussion

Up to 40% of psoriasis patients are non-adherent to their medication, and discordance between patient preferences and treatment regimens may be a primary reason as to why. ⁸ Treatment attributes impacting patients’ preferences for systemic psoriasis treatment include, in decreasing order of importance, treatment location, probability of benefit, and method of delivery. ⁸ Treatment attributes can be outcome attributes or process attributes. ² Examples of treatment outcome attributes include magnitude of benefit, time to benefit, and side effects. Location, duration, frequency, formulation, and cost are examples of treatment process attributes. Of the five themes identified in our study, three were treatment process attributes and two were treatment outcome attributes.

Patients receiving injection medication placed a large emphasis on treatment efficacy. This was in the form of both magnitude of benefit and time to benefit. The impact disease clearance had on patients’ quality of life was the primary motivating factor for using injection medication despite perceived inconveniences of constant refrigeration, difficulties traveling with medication, and handling needles. Among 3426 psoriasis and/or psoriatic arthritis (PsA) patients receiving systemic medication, about one half of patients considered medication to be a burden. ⁹ For patients receiving injection medication, physical preparation for self-injection, fear of injection, and adverse events were among the highest rated perceived burdens. ¹⁰

Fear of adverse events, particularly immune suppression, and aversion to needles were the top two reasons why some patients preferred oral treatment in our study. Patients considered life-long daily ingestion of medication less intimidating than the potential of severe side effects listed on injection medication package inserts. This coincides with a survey study of 292 moderate-to-severe plaque psoriasis patients who were less likely to select treatments that risked tuberculosis and serious infection compared to treatments that may cause gastrointestinal upset. ¹¹ Fear of needles, needle size, and pain have also been patients’ most frequent reported barriers to using injection medications. ¹²

Patients in our study had variable opinions on the convenience of injectable medications compared to oral medications. Their perception of the convenience of treatment location and frequency associated with each type of medication varied and may be influenced by disease severity. ¹³ This supports exploration of preferred treatment attributes for individual patients prior to treatment initation. The emphasis patients placed on topical medications, in addition to systemic modes of therapy, also reinforce their desire to participate in the treatment making plan. Shared decision making when selecting treatments may be used to facilitate adherence, optimize treatment outcomes, and improve patient satisfaction. ¹⁴ Continuous monitoring assessing patients’ preferences at interval patient visits may also be used. ¹²

Despite fears associated with injection medications, providers’ treatment recommendations were often highly valued. Patients appreciated the education health care providers offered on treatment safety and efficacy and were often persuaded by their professional opinion. Alignment of physician recommendations and patient preferences is associated with greater treatment satisfaction in psoriasis, and physicians and patients appear to similiarly prioritize treatment attributes.^13,15

An emphasis on patients’ demographic and socioeconomic status, which may impact medication selection preferences, may also be considered. ² Our study was performed at a single-center institution, which may be a limitation as cultural differences in different geographic locations might affect the results. Additionally, injection and oral medications patients received in this study for systemic psoriasis treatment varied. None of the patients receiving oral medications were taking deucravacitninb, and traditional oral treatments were not able to provide efficacy that is comparable to injectable biologics which was a major theme in this study. However, in general, our themes are supported by previous research which contributes to the validity this study.

Psoriasis reduces patients’ quality of life. Through the development of pathogenesis-direct systemic agents, including injectables and novel oral treatment, complete disease clearance is an achievable goal. Barriers to clearance include adherence. Individualizing treatment plans, using a shared decision-making approach, may be used to improve adherence. ¹ Emphasizing patients’ preferences by addressing fear of side effects, aversion to needles, and convenience in the form of provider-guided education and recommendations may also be helpful.

Appendix.

Patient Interview Guide

• (1) Describe your current treatment regimen for your psoriasis?

• (2) Are you satisfied with your current regimen?

• (3) Why did you choose to use a systemic medication?

• (4) Which systemic medications have you used?

• (5) How has use of systemic medication changed your disease experience?

• (6) What treatment options feel most convenient to you?

• (7) Are you currently or have you ever used an injectable medication?

• (8) Rank preference of topical, oral, or injectable medication

If have or had used an injectable medication for psoriasis:

• (9) What was your experience with injection medications?

• (10) What are the positive aspects?

• (11) What are the negative aspects?

• (12) Have you ever given yourself injections in the past for another medical condition? If yes, has this influenced your current choice of treatment with injections?

• (13) Do(did) you administer it to yourself? If not, who does (did)?

• (14) If you inject yourself, why do you choose to self-administer the drug?

• (15) If someone else does it for you, why do you have them do it instead of yourself?

If had not used an injectable medication for psoriasis:

• (16) Is there a reason? If so, what is it?

• (17) What are your thoughts on injection medications?

• (18) Would you be willing to use injection medications in the future? Why or why not?

• (19) If injectable medications could improve your psoriasis better than oral medications, would you be more willing to try them?

If have or had used an oral medication for psoriasis:

• (20) What was your experience with oral medications?

• (21) What are the positive aspects?

• (22) What are the negative aspects?

If have never used an oral medication for psoriasis

• (23) Would you consider receiving oral treatment in the future?

• (24) If no, what would an oral treatment need to provide for you to consider receiving an oral treatment in the future?

Ethical statement

Ethical approval

All subjects gave their informed consent for inclusion before they participated in the study. The study was conducted in accordance with the Declaration of Helsinki, and the protocol was approved by the Ethics Committee of Wake Forest University Health Sciences Institutional Review Board (IRB00087853).

Patient Consent

Patient consent for patient information to be published in this article was not obtained because this review did not involve any interaction or intervention with human subjects and no identifiable information was published.

Data Availability Statement

The authors confirm that the data supporting the findings of this study are available within the article [and/or] its supplementary materials.

ORCID iDs

Mallory Zaino https://orcid.org/0000-0002-6495-8192

Steven Feldman https://orcid.org/0000-0002-0090-6289