Patient-Reported Outcome Measures as Complementary Information to Clinician-Reported Outcome Measures in Patients With Psoriasis

Barbieri, John S.; Gelfand, Joel M.

doi:10.1001/jamadermatol.2021.3341

Cited by 26 publications

(28 citation statements)

References 7 publications

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“…About the prevalent diagnostic delays among this population, enhancing dermatologists’ training in identifying skin pathologies in non-white skin tones, including expanding the scope of dermatologic learning resources (e.g., textbooks) to include more pictures of pathologies in SOC, could help minimize this pattern of diagnostic delays [ 27 ]. Also, utilizing patient-reported outcome measures (PROMs) within the clinical setting may assist with the earlier identification of patients in need of additional support to manage the physical, psychological, and social consequences of their disease [ 28 , 29 ]. Further, increased interdisciplinary clinical management may be beneficial, as previous studies have emphasized the association between psychosocial interventions (e.g., cognitive behavioral therapy, acceptance and commitment therapy, etc.)…”

Section: Discussionmentioning

confidence: 99%

Perspectives on and Quality of Life in Skin of Color Patients With Mycosis Fungoides/Sézary Syndrome: A Qualitative Analysis

Abraham¹,

Wei²,

Desai³

et al. 2023

Cureus

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BackgroundPrior quantitative studies have described the diminished health-related quality of life (HRQoL) faced by the overall mycosis fungoides (MF)/Sézary syndrome (SS) population; yet, little is known about how the disease affects HRQoL in skin of color (SOC) patients. This qualitative study sought to explore the lived experiences of SOC patients with MF/SS and gain deeper insights into the impact the disease has on various facets of HRQoL. MethodologyInterviews with SOC patients with MF/SS ≥18 were recruited from a cutaneous lymphoma clinic. A thematic analysis was performed to identify overarching themes. ResultsTen patients were invited to participate from July to September 2021. One patient with SS and seven patients with MF (four in the early stage and four in the advanced stage), with a median age of 60.5 years, agreed to participate. Emerging themes included diagnostic and therapeutic delays frequently due to initial misdiagnoses with other skin conditions. Physical and functional burdens significantly hindered participants' abilities to carry out daily responsibilities and maintain employment, and impacts on physical appearance (e.g., darkened skin) led to increased self-consciousness and lack of social acceptance. Participants regarded family and faith as main sources of support in addition to developing healthy coping strategies, such as self-acceptance and adaptability. All participants reported feeling satisfied with their access to healthcare information and the quality of care received. ConclusionsOur findings provide greater insights into how HRQoL is impacted across SOC patients with MF/SS, which can help raise awareness among healthcare providers and assist with creating interdisciplinary healthcare approaches to better support the needs of this population.

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Section: Discussionmentioning

confidence: 99%

Perspectives on and Quality of Life in Skin of Color Patients With Mycosis Fungoides/Sézary Syndrome: A Qualitative Analysis

Abraham¹,

Wei²,

Desai³

et al. 2023

Cureus

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“…Patient-reported outcome measures provide complementary information to clinician-reported outcomes. 206 In a study on psoriasis treatment, dermatologists weighted data related to PROMs just as heavily (36%) as objective clinical outcomes (38%) when making clinical decisions. 207 Of note, patients with acne believe that clinical trials should include PROMs and that these should be the primary outcome.…”

Section: Discussionmentioning

confidence: 99%

Use of Patient-Reported Outcomes in Acne Vulgaris and Rosacea Clinical Trials From 2011 to 2021

Miller

Tong

et al. 2022

JAMA Dermatol

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ImportanceAcne and rosacea have substantial implications for quality of life, and it is therefore important to ensure the patient’s voice is being captured in pivotal randomized clinical trials (RCTs). Although patient-reported outcome measures (PROMs) are a valuable tool to capture the patient perspective, little is known about use of PROMs in RCTs on acne and rosacea.ObjectiveTo characterize the use of PROMs in RCTs on acne and rosacea.Evidence ReviewA systematic literature search was conducted using the search terms acne vulgaris and rosacea in the following databases: MEDLINE through PubMed, Embase, Cochrane Central Register of Controlled Trials, and Cochrane Database of Systematic Reviews. A modified search hedge for RCTs from the McGill Library was applied. All phase 2, 3, and 4 RCTs published between December 31, 2011, through December 31, 2021, that evaluated the efficacy and safety of therapies for acne and rosacea vs any comparator were eligible for inclusion.FindingsA total of 2461 publications describing RCTs were identified, of which 206 RCTs met the inclusion criteria (163 trials [79%] on acne and 43 [21%] on rosacea). At least 1 PROM was used in 53% of trials (110) included; PROM use was more common in rosacea RCTs (67% [n = 29]) compared with acne RCTs (50% [n = 81]). At least 1 dermatology-specific (13% [n = 27]) or disease-specific (14% [n = 28]) PROM was included in the RCTs analyzed. Only 7% of trials (14) included a PROM as a primary outcome measure. There was no statistically significant increase in PROM inclusion over the study period (11 of 21 trials in 2011 vs 5 of 12 trials in 2021).Conclusions and RelevanceIn this systematic review, PROMs were included in approximately one-half of acne and rosacea RCTs performed over the study period. In addition, PROMs were rarely used as a primary outcome measure, and inclusion of PROMs has not increased substantially over the past 10 years. Increasing use of PROMs in RCTs can ensure that the patient’s perspective is captured during the development of new treatments for acne and rosacea.

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“…(9)(10)(11)(12) Construct validity, or the evaluation of how well designed a measure is to evaluate its target area, HRQL, is vital to this goal. While the Dermatology Life Quality Index (DLQI) and the adapted DLQI-Relevant (DLQI-R) instruments have been evaluated in psoriasis, (13)(14)(15)(16)) construct validity testing for Skindex-16 remains sparse in psoriasis. Skindex-16 has recently shown good construct validity in hidradenitis suppurativa, (17) acne,(18) and compared favorably when directly compared with DLQI in recent comparisons.…”

Section: Introductionmentioning

confidence: 99%

Evaluation of Skindex-16 construct validity in routinely collected psoriasis data: a retrospective analysis of the relationship between overall physician global assessment scores and Skindex-16 and measure discordance

et al. 2022

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Patient-reported outcome measures (PROMs) capture disease severity metrics from the patient's perspective, including healthrelated quality of life (HRQL). Disease-speci c validation of PROMs improves their clinical utility. We evaluated construct validity (HRQL) for Skindex-16 in routinely seen psoriasis patients and characterized instances of discordance between Skindex-16 scores and clinician reported outcome measure of disease severity. We retrospectively studied psoriasis patients seen by University of Utah Dermatology from 2016 to 2020. Cross-sectional construct validity was assessed using quantile regression and Spearman correlation between overall physician global assessment (OPGA) score and Skindex-16 scores.Longitudinal, within-subject correlation was performed using linear mixed models. Discordance (10th percentile or lower OPGA and 90th percentile or higher poor HRQL; cspHRQL] or the reverse [severe skin, good HRQL; ssgHRQL]) was characterized descriptively. 681 rst-visit patients with psoriasis were included. Median overall Skindex-16 score varied by ≥ 10 points across all levels of OPGA scores. OPGA and Skindex-16 domain scores were moderately correlated (emotions ρ = 0.54, functioning ρ = 0.47, and symptoms ρ = 53). Longitudinal correlations were similar (emotion ρ xy = 0.54, functioning ρ xy = 0.65, symptoms ρ xy = 0.47). Visits with cspHRQL discordance occurred for each Skindex-16 domain (emotions = 7, functioning = 13, symptoms = 12). The ssgHRQL group was observed within the emotions (n = 1) and functioning (n = 23) domains. Median Skindex-16 scores are different between different levels of OPGA and show moderate cross-sectional and longitudinal correlation. This supports construct validity in patients with psoriasis. Severe discordance was rare and most often for those with clear skin but poor HRQL. These discordances can prompt further patient-clinician conversation.

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Patient-Reported Outcome Measures as Complementary Information to Clinician-Reported Outcome Measures in Patients With Psoriasis

Cited by 26 publications

References 7 publications

Perspectives on and Quality of Life in Skin of Color Patients With Mycosis Fungoides/Sézary Syndrome: A Qualitative Analysis

Perspectives on and Quality of Life in Skin of Color Patients With Mycosis Fungoides/Sézary Syndrome: A Qualitative Analysis

Use of Patient-Reported Outcomes in Acne Vulgaris and Rosacea Clinical Trials From 2011 to 2021

Evaluation of Skindex-16 construct validity in routinely collected psoriasis data: a retrospective analysis of the relationship between overall physician global assessment scores and Skindex-16 and measure discordance

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