Psoriasis Patients Describe Personalized Trade-offs in Treatment Decisions: Lessons Learned from Focus Groups

To the Editor

Psoriasis is a common debilitating disease for which there are many treatment options creating complex choices for patients and healthcare providers. Patient Decision Aids (PDAs), decision-supporting tools that facilitate shared decision-making, may engender a collaborative process between physician and patient. PDA design typially focuses on conveying information about evidence-based treatment options, and the value-sensitive nature of the decisions.^1,2 To help patients better align treatment choices with their personal values, the specifics of patient treatment preferences must be more elaborately embedded into the design of PDAs.^3,4 We undertook detailed assessment of psoriasis patients’ treatment decision-making experiences to discover key patient preferences that can be incorporated into subsequent psoriasis PDA design.

Methods

The study was approved by The Rockefeller University Institutional Review Board; all participants provided written informed consent.

Focus groups followed a typical 60 minute semi-structured, moderator-facilitated interview format. Stage 1 focus groups assessed patient interest in the use of a PDA, and preferences for platform and content. Stage 2 focus groups assessed in greater detail key themes identified in Stage 1. Moderator guides were tested among investigators and patients for face and content validity; at the end of each focus group, themes were summarized by the moderator for validation or refinement by participants. An experienced moderator conducted the initial groups at each stage and trained and observed the second moderator for consistency. Redacted audiotape transcripts were coded for themes by certified qualitative analysts in collaboration with the authors using qualitative analysis software (NVivo).

Results

Eight focus groups were conducted between November 2013 and January 2015, enrolling psoriasis patients recruited from the general public and from a volunteer registry, and excluding volunteers with significant prior research experience: 41 participants (24 males, 17 females) enrolled in and completed the study. Mean age was 51.2 years; mean duration of psoriasis was 16.2 years. Mean Dermatology Life Quality Index score was 8.2, indicating that psoriasis had moderate effect on focus group participants’ life on average.

Participants were interested in using a PDA, in on-line format and in-person with a provider. Content themes included detailed treatment information, access to providers with psoriasis expertise, and information about disease and treatment interactions. Treatment “effectiveness” and “safety” were dominant themes with variable personal meanings, including opposing meanings, e.g. partial clearing of lesions could be considered effective or ineffective (Table 1). Trade-offs in treatment decision-making emerged as a strong theme across all focus groups. For example, patients weighed the benefits of having clear skin against the risks of organ damage from prolonged systemic treatment, or of rebounding symptom severity with treatment cessation: “It’s a balance of the quality of life and what you’re risking.” In general, patients placed safety and effectiveness over convenience, and some patients favored effectiveness over possible safety issues. One participant valued drug safety so highly he was willing to endure psoriasis that severely limited his life rather than risk a systemic therapy. Several participants noted that the process of explicitly examining values underlying decision-making provided insights that impacted their decisions.

Table 1.

Themes from Focus Groups Regarding Personal Decision Aid for Psoriasis

Themes (analysis codes and sub-codes)	Frequency of mention
Stage 1 – Preferences regarding platform and format
On-line, with in-person assistance e.g. doctor, pharmacist, educator	++++
On-line, to use on one’s own	+++
Evidence of unbiased input (mistrust of pharmaceutical sponsor)	++
Other (paper questionnaire, pamphlet, help-line)	+
Stage 1 – Preferences regarding information content
Side Effects, Contraindications and Drug	++++
Treatment Effectiveness - evidence-based, patient ratings, testimonials	+++
Non-Drug Therapies including diet/lifestyle	+++
Personalized Information	+++
Duration and Durability of Treatment	+++
Cost	++
Mechanism of disease and of drug effect	++
Referral to providers with psoriasis expertise	++
Resources to address social impact (intimacy issues, misconceptions)	++
Stage 2 - Themes related to effectiveness, safety, and convenience
Decisions involve Trade-offs among Effectiveness, Safety, Convenience	++++
What Does Effectiveness Mean?
Complete or Partial Cure	++++
Treatment Works Over Time	+++
Clears Lesions	++
Reduces Itching	++
Less Peeling and Flaking of Plaques	+
Quick Onset of Treatment Effect	+
What Does Safety Mean?
Severity of Side Effects	++++
Long-Term Safety	++
Interactions with other disorders, other drugs	++
Personal Perceptions about Treatment Safety	+
The Right Dosage	+
What Does Convenience Mean?
The Body Area Affected Matters in treatment selection	++++
Comparing Modes of Treatment Delivery	++++
Frequency of Treatment	+++
Clinic or Self-Administered Treatments	++
Simple and Easy Treatments	++
Short Treatment Duration	+

⁺⁺⁺⁺Very strongly present (20 or more mentions)

⁺⁺⁺Strongly present (10–19 mentions)

⁺⁺Partly Present (5–9 mentions)

⁺Weakly Present (1–4 mentions)

Discussion

When treatment options are varied and imperfect as they are for psoriasis, “trade-offs” between effectiveness, safety, and convenience are required in treatment decisions. Schmieder et al.⁵ reported that patients are willing to trade decreased safety (side effects) for increased effectiveness (better therapeutic outcome) or increased convenience (compatibility with personal and professional life). In contrast, Seston et al.⁶ reported that patients are willing to trade decreased effectiveness (time to achieve moderate skin improvement) to increase safety (minimize the risk). Our focus group study confirmed that the trade-offs in treatment decisions are highly personalized based on the interpretation and relative value placed on effectiveness, safety, and convenience.

To facilitate patient decision-making that incorporates personalized values related to treatment trade-offs, a psoriasis PDA must elicit individual perceptions of the trade targets. If the PDA offers ranked lists of treatments according to effectiveness, safety, or convenience, the PDA should first investigate patients’ own conceptions of these three factors. This approach may help medical practitioners effectively and cooperatively address patients’ risk-benefit concerns and to incorporate patient preferences within the consultation.