Patient Involvement in Outcome Measures for Psoriatic Arthritis

Tillett, William; Adebajo, Ade; Brooke, Mel; Campbell, Willemina; Coates, Laura C.; FitzGerald, Oliver; Gossec, Laure; Helliwell, Philip S.; Hewlett, Sarah; James, Jana; Minnock, Patricia; Reast, Aisling; O’Sullivan, Dennis; Wit, Maarten de; McHugh, Neil

doi:10.1007/s11926-014-0418-7

Cited by 37 publications

(37 citation statements)

References 58 publications

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“…Some of the PRO instruments used in PsA clinical trials were initially created for other diseases 14,15,16,17 ; other generic PRO instruments are also used in PsA trials with the goal of characterizing overall population health, including the Medical Outcomes Study 36-Item Short Form Survey (SF-36) 18 . PRO instruments such as Psoriatic Arthritis Quality of Life questionnaire (PsAQoL), the Psoriasis Symptom Inventory, and the Psoriatic Arthritis Impact of Disease questionnaire (PsAID) have all made strides to incorporate patient feedback in the disease-specific measurement of PRO in PsA 19,20,21,22 .…”

Section: Rheumatologymentioning

confidence: 99%

Evaluation of Self-reported Patient Experiences: Insights from Digital Patient Communities in Psoriatic Arthritis

Sunkureddi

Doogan²,

Heid³

et al. 2018

J Rheumatol

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Objective.To evaluate the types of experiences and treatment access challenges of patients with psoriatic arthritis (PsA) using self-reported online narratives.Methods.English-language patient narratives reported between January 2010 and May 2016 were collected from 31 online sources (general health social networking sites, disease-focused patient forums, treatment reviews, general health forums, mainstream social media sites) for analysis of functional impairment and 40 online sources for assessment of barriers to treatment. Using natural language processing and manual curation, patient-reported experiences were categorized into 6 high-level concepts of functional impairment [social, physical, emotional, cognitive, role activity (SPEC-R), and general] and 6 categories to determine barriers to treatment access (coverage ineligibility, out-of-pocket cost, issues with assistance programs, clinical ineligibility, formulary placement/sequence, doctor guidance). The SPEC-R categorization was also applied to 3 validated PsA patient-reported outcome (PRO) instruments to evaluate their capacity to collect lower-level subconcepts extracted from patient narratives.Results.Of 15,390 narratives collected from 3139 patients with PsA for exploratory analysis, physical concepts were the most common (81.5%), followed by emotional (50.7%), cognitive (20.0%), role activity (8.1%), and social (5.6%) concepts. Cognitive impairments and disease burden on family and parenting were not recorded by PsA PRO instruments. The most commonly cited barriers to treatment were coverage ineligibility (51.6%) and high out-of-pocket expenses (31.7%).Conclusion.Patients often discussed physical and emotional implications of PsA in online platforms; some commonly used PRO instruments in PsA may not identify cognitive issues or parenting/family burden. Nearly one-third of patients with PsA reported access barriers to treatment.

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Section: Rheumatologymentioning

confidence: 99%

Evaluation of Self-reported Patient Experiences: Insights from Digital Patient Communities in Psoriatic Arthritis

Sunkureddi

Doogan²,

Heid³

et al. 2018

J Rheumatol

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“…This systematic literature review will inform the development of an updated PsA core set of domains and outcome measures that will include patient input,9 13 and will integrate disease-specific aspects of clinical relevance to PsA for longitudinal care and interventional trials.…”

Section: Introductionmentioning

confidence: 99%

Systematic literature review of domains assessed in psoriatic arthritis to inform the update of the psoriatic arthritis core domain set

Kalyoncu

Ogdie

Campbell³

et al. 2016

RMD Open

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The objectives of this systematic literature review (SLR) were to identify domains and outcome measures used in psoriatic arthritis (PsA) studies in the past 5 years, and to compare the measurement of the Outcome Measures in Rheumatology (OMERACT) 2006 PsA Core Domain Set in studies published in 2010–2015 vs those published in 2006–2010. We performed a systematic literature search in two databases, PubMed and Embase, to identify randomised controlled trials (RCTs) in PsA. We also identified PsA longitudinal observational studies (LOS). Three patient research partners provided input into study conception, and data collection and interpretation. We identified 41 studies representing 22 unique RCTs, 27 LOS and 12 registries. Across all studies, we identified 24 domains and 169 outcome measures. In addition to the PsA Core Domain Set (6 domains), the following domains were also assessed in more than 30% of RCTs: acute phase reactants, dactylitis, enthesitis, fatigue and work productivity. We identified a range of 1–15 outcome measures per domain with a mean (SD) of 7 (4.7) per domain. The complete PsA Core Domain Set was assessed in 59% of RCTs in 2010–2015 compared to 23.5% RCTs in 2006–2010. There has been increased measurement of the PsA Core Domain Set in RCTs and LOS in the past 5 years. Numerous additional outcomes were also measured. The PsA Core Domain Set needs an update to standardise PsA outcome assessments. This SLR will inform the development of an updated PsA Core Domain Set with patient research partner input.

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“…The move towards the greater involvement of patients as research partners or active collaborators seeks to ensure that patients are co-drivers through all stages of PROM development, selection, implementation and evaluation [5,22,[27][28][29]. The resulting co-production, or co-selection, of a PROM seeks to ensure that the measure has greater resonance with all stakeholders, the data is taken seriously and that it is, indeed, fit for purpose.…”

Section: How To Measure and Understand The Datamentioning

confidence: 99%

Using PROMs in Healthcare: Who Should Be in the Driving Seat—Policy Makers, Health Professionals, Methodologists or Patients?

Haywood

Wilson²,

Staniszewska

et al. 2016

Patient

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Patient Involvement in Outcome Measures for Psoriatic Arthritis

Cited by 37 publications

References 58 publications

Evaluation of Self-reported Patient Experiences: Insights from Digital Patient Communities in Psoriatic Arthritis

Evaluation of Self-reported Patient Experiences: Insights from Digital Patient Communities in Psoriatic Arthritis

Systematic literature review of domains assessed in psoriatic arthritis to inform the update of the psoriatic arthritis core domain set

Using PROMs in Healthcare: Who Should Be in the Driving Seat—Policy Makers, Health Professionals, Methodologists or Patients?

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