Facing the dilemma of patient-centred psoriasis care: a qualitative study identifying patient needs in dermatological outpatient clinics

Khoury, L.R.; Skov, Lone; Møller, Tom

doi:10.1111/bjd.15292

Cited by 44 publications

(60 citation statements)

References 36 publications

(71 reference statements)

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“…Combined, the themes represent a conceptual model for understanding HRQoL in 12–17‐year‐old adolescents with psoriasis, reflecting a range of physical, psychological and social concerns. While previous qualitative studies have touched upon several of the identified issues in adult and paediatric psoriasis, our study goes further by providing an integrated conceptual model of HRQoL, which is specific to both psoriasis and adolescents.…”

Section: Discussionmentioning

confidence: 99%

Health-related quality of life in adolescents with psoriasis: an interview-based study

et al. 2018

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SummaryBackground Psoriasis is a common skin disease affecting the physical, psychological and social well-being of patients and their families. Most research so far has been limited to adults, and little is known about the qualitative experiences of young people with psoriasis. Objectives To provide an in-depth understanding of the impact of psoriasis on adolescents' health-related quality of life (HRQoL). Methods Patients and their parents were recruited from a dermatology outpatient clinic, the Danish National Birth Cohort and the Danish Psoriasis Association. Thirty-six semistructured interviews were conducted with adolescents with psoriasis aged 12-17 years (n = 18), their parents (n = 14) and health professionals working with psoriasis (n = 4). Interviews were digitally recorded, transcribed verbatim and analysed using inductive thematic analysis. Results The participants reported psoriasis-related HRQoL challenges within six main themes: physical symptoms, feeling different, psoriasis-related worry about the future, increased attention, attempts to conceal skin, and treatment-related frustrations and worry. Taken together, a broad range of the reported difficulties appeared to arise from appearance-related concerns. The impact of psoriasis and its treatment on the adolescents' daily lives varied considerably. Conclusions This first in-depth, qualitative study of HRQoL in adolescents with psoriasis provides a conceptual framework for understanding the impact of psoriasis and its treatment on the physical, psychological and social aspects of their daily lives.

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Section: Discussionmentioning

confidence: 99%

Health-related quality of life in adolescents with psoriasis: an interview-based study

et al. 2018

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“…Struggling with unrecognized distress. Patients felt un supported and sometimes angry due to the perceived lack of medical attention or understanding among their family and com munity about psychological symptoms: "I was about to break down mentally…I wrote it on the questionnaire…but none of the physicians or nurses asked me about it" (26).…”

Section: Synthesismentioning

confidence: 99%

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

Sumpton

Kelly

Tunnicliffe

et al. 2020

Arthritis Care & Research

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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.

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“…The participants in this study perceived a lack of personalized care and education, and believed it was made worse by standardized consultations in the dermatology outpatient setting. They also found routine follow‐ups to be burdensome.…”

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confidence: 91%

“…In this issue of the BJD , Khoury and colleagues present their qualitative study of the experiences and expectations of people with psoriasis who were receiving care at a hospital outpatient clinic after treatment from a private dermatologist had failed. From the patients’ perspectives, the clinic routines and consultations were often physician‐centred, and their individual contexts and questions were not considered adequately within often brief consultations.…”

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confidence: 99%

“…Khoury and colleagues’ research also suggested that health education may be more effective when it is individualized rather than delivered in group educational sessions, given patients’ individual needs and their perception of psoriasis as a private matter. As with medical care, health education is more likely to be effective and lead to positive outcomes if patients contribute to identifying their education needs and the interventions that are most likely to help them…”

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Patient-centred health care for people with chronic skin conditions

Abbott

2017

Br J Dermatol

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Facing the dilemma of patient-centred psoriasis care: a qualitative study identifying patient needs in dermatological outpatient clinics

Cited by 44 publications

References 36 publications

Health-related quality of life in adolescents with psoriasis: an interview-based study

Health-related quality of life in adolescents with psoriasis: an interview-based study

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

Patient-centred health care for people with chronic skin conditions

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