Dataset Information

Patient perspectives on the pathway to psoriatic arthritis diagnosis: results from a web-based survey of patients in the United States.

ABSTRACT: Background:There are limited real-world data on the diagnostic experiences of patients with psoriatic arthritis (PsA), including medical care sought and potential barriers to diagnosis. We aim to describe patient experiences related to receiving a PsA diagnosis. Methods:Ours was a mixed-method, 2-phase study. Phase 1 comprised concept elicitation and cognitive interviews with clinical experts and adults diagnosed with PsA to develop a cross sectional, web-based survey. US adults with a self-reported PsA diagnosis were recruited through a patient support community (CreakyJoints), an online patient research registry (ArthritisPower), and social media outreach. In Phase 2, the online survey collected data on sociodemographics, clinical symptoms, disease burden, and diagnosis history of survey respondents with PsA. Results:Of the 203 respondents included, 172 (84.7%) were female, and the mean (SD) age was 51.6 (10.8) years. The time between seeking medical attention and receiving a diagnosis was

SUBMITTER: Ogdie A

PROVIDER: S-EPMC6953285 | biostudies-literature | 2020

REPOSITORIES: biostudies-literature

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Patient perspectives on the pathway to psoriatic arthritis diagnosis: results from a web-based survey of patients in the United States.

Ogdie Alexis A Nowell W Benjamin WB Applegate Eddie E Gavigan Kelly K Venkatachalam Shilpa S de la Cruz Marie M Flood Emuella E Schwartz Ethan J EJ Romero Beverly B Hur Peter P

BMC rheumatology 20200110

<h4>Background</h4>There are limited real-world data on the diagnostic experiences of patients with psoriatic arthritis (PsA), including medical care sought and potential barriers to diagnosis. We aim to describe patient experiences related to receiving a PsA diagnosis.<h4>Methods</h4>Ours was a mixed-method, 2-phase study. Phase 1 comprised concept elicitation and cognitive interviews with clinical experts and adults diagnosed with PsA to develop a cross sectional, web-based survey. US adults w ...[more]

PMID: 31938764

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Project description:BACKGROUND:Psoriatic arthritis (PsA) is a chronic immune-mediated inflammatory musculoskeletal disease, manifesting as peripheral arthritis, enthesitis, dactylitis, spondylitis, and skin and nail psoriasis. A core set of domains for measuring the impact of PsA has been developed, including pain, patient global assessment, physical function, health-related quality of life (HRQoL), and fatigue. To understand the impact of PsA on health domains from a patient's perspective, a global survey was developed and results reported in the context of the 12-item Psoriatic Arthritis Impact of Disease (PsAID-12) questionnaire. METHODS:An online patient-based global survey was conducted by The Harris Poll in Australia, Brazil, Canada, France, Spain, Taiwan, the UK, and the US between November 2, 2017 and March 12, 2018. Eligible patients were???18?years old with a diagnosis of PsA for >?1?year, had visited a rheumatologist/dermatologist in the past 12?months and reported using ? 1 synthetic/biologic disease-modifying antirheumatic drug for PsA. Patients reported on PsA severity and symptoms, and the impact of PsA on HRQoL. After survey completion, responses were aligned with PsAID health domains. Descriptive statistics and chi-square tests were conducted. RESULTS:This analysis included 1286 patients from eight countries. Most patients (97%) reported musculoskeletal symptoms relating to PsA in the past year. Common moderate/major impacts of PsA were on physical activity (78%), ability to perform certain activities (76%), work productivity (62%), and career path (57%). Skin/nail symptoms occurred in 80% of patients. Overall, 69% of patients reported that PsA had a moderate/major impact on emotional/mental wellbeing, 56% on romantic relationships/intimacy, and 44% on relationships with family and friends. Social impacts included emotional distress (58%), social shame or disapproval (32%), and ceased participation in social activities (45%). Over half of all patients experienced unusual fatigue over the past 12?months (52%). The health domains that patients reported as being impacted by PsA aligned with life impact domains of the patient-derived PsAID health domains. CONCLUSION:These results highlight the impact of PsA on multiple health domains from a patient perspective that should be considered during shared decision-making processes between healthcare providers and patients.

Project description:IntroductionPsoriatic arthritis (PsA) and psoriasis (PsO) have a significant impact on HRQOL and work productivity loss. In patients with both PsA and PsO, the full extent of the physical and emotional burden of joint- and skin-related symptoms is less understood from the patient perspective.MethodsA cross-sectional study of PsO patients with PsA from the US, France, and Germany was conducted using an online survey. Data on demographics, PsO severity by patient-reported body surface area involvement (BSA), PsA severity by RAPID3, impact of PsO and PsA using Patient Global Assessment (1-5), and novel questions exploring the emotional burden of joint/skin-related symptoms were collected. Multivariate regression analyses examined severity of joint and skin symptoms as predictors of quality of life (QoL), measured by PsAQoL, and Work Productivity and Activity Impairment (WPAI).ResultsOf the 439 patients, 23.9% had mild (RAPID3 of 0-2) and 76.1% had moderate-severe PsA (RAPID3 of 2.1-10), while 51% had mild and 49% had moderate-severe PsO (≥ 3 palms of the hand for BSA). Multivariate analyses showed that severity of joint symptoms was strongly associated with lower QoL (t = 13.15), followed by impact of skin symptoms (t = 5.11), and age (t = - 4.73), all p < 0.0001. About 57% of all patients reported a DLQI > 5, indicating a moderate-to-extremely large effect of psoriasis on HRQoL. Joint severity and impact of joint symptoms were the strongest predictors of WPAI. Patients also associated skin and/or joint symptoms with a variety of emotions and QoL measures that were not captured on the validated scales (fatigue, how they think of themselves, how others thought of them, making a first impression etc.).ConclusionsIn this study, both skin and joint symptoms had a broad, meaningful impact on patient QoL, work productivity, daily activities, and emotional well-being. These data highlighted the unique and significant impact of PsA among patients with PsO.FundingEli Lilly and Company.

Project description:Psoriatic arthritis (PsA) is a chronic, inflammatory disease. The effects of PsA real-world treatment patterns on patient-reported outcomes in the US and 5 European countries (EU5; France, Germany, Italy, Spain, UK) were evaluated. Respondents from the 2016 National Health and Wellness Survey received advanced therapies (e.g., biologic disease-modifying antirheumatic drugs [DMARDs]), other therapies, (e.g., conventional synthetic DMARDs), or no treatment. Assessments included demographics, disease severity (patient-reported), comorbidities (Charlson Comorbidity Index), health status (Short Form-36 Health Survey), depression (Patient Health Questionnaire-9), work productivity (Work Productivity and Activity Index), and treatment adherence (Morisky Medication Adherence Scale-8). Overall, 1037 respondents from the US and 947 respondents from the EU5 were included. Of these, 21.7% US and 7.3% EU5 respondents received advanced therapies; 16.6% and 28.5%, other therapies; and 61.7% and 64.2%, no treatment, respectively. During treatment with advanced or other therapies, 40.8-54.7% US and 57.7-58.9% EU5 respondents self-reported moderate or severe PsA. Respondents receiving advanced therapies had the highest Charlson Comorbidity Index score (US, 1.25; EU5, 1.42); the lowest scores were with no treatment (0.52 and 0.49, respectively). Employment was lowest with other therapies (US, 47.7%; EU5, 41.1%). Overall work impairment was reported by 57.9% US and 62.6% EU5 respondents receiving advanced therapies. Medication adherence was generally low in the US and medium in the EU5 (Morisky Medication Adherence Scale-8: low, US 40.1-46.7%, EU5, 29.0-35.2%; medium, US 29.3-36.1%, EU5 37.8-49.3%; high, US 23.8-24.0%; EU5, 21.7-27.0%). Advanced and other therapies reduced PsA severity; however, >?40% of respondents reported moderate or severe PsA during treatment. Better management and adherence may reduce unmet need and disease burden. Further work is required to improve PsA diagnosis and time to treatment initiation.

Dataset Information

Patient perspectives on the pathway to psoriatic arthritis diagnosis: results from a web-based survey of patients in the United States.

Publications

Patient perspectives on the pathway to psoriatic arthritis diagnosis: results from a web-based survey of patients in the United States.

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