Patients’ Perspectives and Experience of Psoriasis and Psoriatic Arthritis: A Systematic Review and Thematic Synthesis of Qualitative Studies

Abstract

Objective. To describe the range and depth of perspectives and experiences of patients with psoriasis and psoriatic arthritis to inform gaps in patient-centered care.Methods. We searched MEDLINE, Embase, PsycINFO, and CINAHL to April 2018. Thematic synthesis was used to analyze the findings.Results. We included 56 studies involving 1,484 adult patients with psoriasis (n = 1,147) and psoriatic arthritis (n = 337). Six themes (and subthemes) were identified: suffering uncontrollable and ongoing upheaval (dictating life choices and course, disrupting family and social roles, limited by debilitating symptoms, unstoppable and far-reaching fatigue), weighed down by mental load (anxiety provoked by the volatility of symptoms, dreading deterioration, struggling with unrecognized distress, helpless and nihilistic), harboring shame and judgement (marked as unhygienic and contagious, rejected and isolated, hiding away and resenting own appearance, pain and embarrassment in intimacy), demoralized by inadequacies and burden of therapy (disappointed by unmet expectations of treatment benefit, daily drudgery, deterred by unpalatable or inconvenient treatments, disempowered by lack of personalized care), gaining control (making sense of the condition, accepting a new health status, regaining independence and normality, attuning to the body), and making confident treatment decisions (trading off perceptible benefits against safety and convenience, relying on family input, seeking empowering and reassuring relationships).Conclusion. Patients with psoriasis and psoriatic arthritis contend with disruption in their functioning, roles, and life course and have unmet expectations about treatment. Enhanced therapeutic relationships, addressing treatment expectations and supporting psychosocial needs may improve satisfaction and outcomes.

Real-World Experience of Patient-Relevant Benefits and Treatment Satisfaction with Apremilast in Patients with Psoriasis: An Analysis of the APPRECIATE Study

“…Treatment effectiveness has been shown to strongly influence treatment satisfaction and may affect patients' treatment preferences. However, studies of patients undergoing treatment for a range of conditions, including psoriasis, show that some patients report high treatment satisfaction despite a lack of treatment effectiveness based on physician-and patient-rated assessments [16][17][18][19]. Other aspects of treatment such as safety, route of administration, and compatibility with lifestyle can also affect overall treatment satisfaction [18][19][20].…”

Treatment goals and preferences of pediatric psoriasis patients, young adults, and parents

“…Psoriasis is a common chronic inflammatory skin disease affecting 2-4% of the Western population (1), with an onset before adulthood in almost one-third of cases (2). Psoriasis has profound physical, emotional, and psychological effects (3,4), which is reflected in its negative impact on the quality of life of young psoriasis patients and their parents (5)(6)(7)(8)(9)(10). To provide patientcentered care and optimize treatment, it is essential to consider patient needs, preferences, and goals (11,12).…”

Fatigue in inflammatory arthritis

“…People with PsA also experience 'unstoppable and far reaching fatigue' which is different from normal tiredness. 30 Their fatigue is linked to lack of motivation, loss of appetite and bodily pain. 30 People with SLE use similar words to describe their fatigue ('worn out', 'lack of energy', 'exhaustion' and 'not wanting to do anything') and they also find that the frequency and severity of their fatigue varies from day to day.…”

“…30 Their fatigue is linked to lack of motivation, loss of appetite and bodily pain. 30 People with SLE use similar words to describe their fatigue ('worn out', 'lack of energy', 'exhaustion' and 'not wanting to do anything') and they also find that the frequency and severity of their fatigue varies from day to day. 29 People with SLE describe the physical consequence of fatigue as 'feeling weak' while the emotional impact concern mood swings, irritability, helplessness, anger, anxiety, tearfulness and feeling miserable.…”