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Development of a national survey on foot involvement among people with psoriatic arthritis in Australia using a best practice approach: a survey development protocol.

ABSTRACT: BACKGROUND:Limited research to date has defined the nature and extent of foot involvement in a psoriatic arthritis-specific population in Australia and the scale of the problem remains unclear. Survey research provides the ideal opportunity to sample a large population over a wide geographical area. Although quality criteria for survey research have been developed, research shows that adherence is low and that survey studies are poorly reported in peer-reviewed survey articles, which limits the ability to inform future survey design. The objective of this paper was to develop a national survey about foot involvement in people with psoriatic arthritis using a best practice approach. This is a methods paper for the development of survey research. METHODS:A systematic, multi-stage process of survey development was undertaken, which comprised 3 phases: 1) the generation of the conceptual framework and survey content; 2) the development of the survey and pre-testing and 3) development of the survey dissemination strategy. A survey best practice approach was adopted using iterative pre-testing techniques, which included; cognitive debriefing, cultural sensitivity review, survey design expert validation, subject expert validation and pilot testing. Targeted postal and online survey dissemination strategies were developed a priori to optimise the response rates anticipated. RESULTS:A 59-item survey with 8 sections was developed. Findings demonstrated a high survey response (n =?649), high data completeness (83% of respondents reached the end of the survey) and low rates of missing data (below 5% for 95% of respondents). Extensive survey pre-testing among the target population, health professionals and experts improved the overall quality, content validity, functioning and representativeness of the survey instrument, which optimised potential response rates. Clear audit trails that mapped the analytical process at each stage substantiated the rigour of the survey development methods. Robust strategies for sampling, survey dissemination and community engagement were deemed to have made a powerful contribution to response rates and the scale of information collected. CONCLUSIONS:Robust patient-centred methods in survey design were used to create a novel, high-quality survey to comprehensively evaluate psoriatic arthritis-related foot involvement. Transparent and precise description of the survey design and dissemination methods provides useful information to other researchers embarking on survey design in healthcare.

SUBMITTER: Carter K

PROVIDER: S-EPMC7448479 | biostudies-literature | 2020 Aug

REPOSITORIES: biostudies-literature

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Development of a national survey on foot involvement among people with psoriatic arthritis in Australia using a best practice approach: a survey development protocol.

Carter Kate K Walmsley Steven S Rome Keith K Turner Deborah E DE

Journal of foot and ankle research 20200826 1

<h4>Background</h4>Limited research to date has defined the nature and extent of foot involvement in a psoriatic arthritis-specific population in Australia and the scale of the problem remains unclear. Survey research provides the ideal opportunity to sample a large population over a wide geographical area. Although quality criteria for survey research have been developed, research shows that adherence is low and that survey studies are poorly reported in peer-reviewed survey articles, which lim ...[more]

PMID: 32847560

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Project description:Background:Chronic inflammatory arthritis is associated with increased cardiovascular (CV) morbidity and mortality. Pharmacological management and healthy lifestyle modification is recommended to manage these risks, but it is not known how often these are utilised and whether there is any difference in their use between patients with different types of arthritis. The aim of this study was to determine and compare the proportion of participants with rheumatoid arthritis (RA) and psoriatic arthritis (PsA) receiving pharmacological or lifestyle management strategies for CV risk factors. The secondary objective was to identify factors associated with use of management strategies. Methods:A survey was sent to online participants in the Australian Rheumatology Association Database, a voluntary national registry for inflammatory arthritis. Participants were asked whether they took medications for hypertension, hyperlipidaemia and diabetes, and to report their height, weight, level of physical activity, and dietary changes made. The use of management strategies was compared between participants with RA and PsA. Logistic regression analyses were performed to identify factors associated with physical activity and dietary changes. Results:There were 858 respondents with RA and 161 with PsA (response rate 64.5%). Pharmacological treatment was reported by 93% of participants with hypertension and 70% with hyperlipidaemia. All participants with diabetes reported being managed with dietary modification, pharmacological treatment, or a combination of both. Adequate physical activity was reported by 50.8%. Only 27% of overweight or obese participants reported making any dietary change for their health in the past year. There was no difference between RA and PsA in reported utilisation of management strategies. Hyperlipidaemia and being overweight were associated with making dietary change. Obesity and arthritis disease activity were negatively associated with physical activity. Conclusions:Most participants with RA and PsA reported using pharmacological treatment for CV risk factors. Relatively few reported using lifestyle modifications. Targeted lifestyle interventions should be implemented for RA and PsA patients.

Project description:IntroductionPsoriatic arthritis (PsA) is a chronic, systemic, inflammatory disease where disease burden and quality of life (QoL) are affected by both joint and skin manifestations.MethodsPatient and physician reported data were collected about 3200 patients in a cross-sectional survey of patients from nine countries. Patient-reported outcomes (PROs) included perceptions of symptom importance, EuroQol questionnaire (EQ-5D), Psoriatic Arthritis Impact of Disease (PsAID12), and Work Productivity and Activity Impairment (WPAI) Index. Outcomes were compared in patients with 'joint-only' and 'joint and skin' disease symptoms.ResultsOf the 3200 patients, 2703 had complete information for 'joint-only' or 'joint and skin' involvement and were included in the analysis. Patients had a mean age of 49.2 years, 45.2% were female, and 64.5% had 'joint and skin' involvement. Patients with 'joint and skin' involvement had higher mean tender and swollen joint counts (5.2 and 4.8) than patients who were 'joint-only' (2.0 and 1.5). Significantly more patients with active 'joint and skin' symptoms experienced a flare (currently or within the last 12 months) compared with 'joint-only' patients (34.9 vs. 23.2%, p < 0.001). When asked to prioritize the burden of symptoms, 61.6% of patients prioritized joints, 38.4% prioritized skin. Anxiety/depression was experienced by 41.4% of patients, 62.4% of whom indicated that both joint and skin symptoms were the cause. Patients with 'joint and skin' involvement reported significantly worse QoL, work productivity and activity impairment than 'joint-only' patients (EQ-5D index 0.79 vs. 0.85, p < 0.001; EQ-5D VAS 71.98 vs. 77.68, p < 0.001; PsAID12 2.91 vs. 1.66, p < 0.001; WPAI overall work impairment 25.61 vs. 16.32, p < 0.001).ConclusionsPsA patients who experience 'joint and skin' symptoms had significantly worse clinical outcomes, health-related QoL, and work productivity compared with patients with 'joint-only' symptoms.

Project description:IntroductionThe proportion of women being treated with biologics is growing. However, data on treatment recommendation awareness among treating physicians and women who are considering pregnancy and family planning are limited. In this study, we used a questionnaire survey to learn how rheumatologists and dermatologists address women's needs for family planning, pregnancy, and breastfeeding, as well as their possible concerns with concurrent inflammatory rheumatic disease or psoriasis.MethodsA 55-question (in English) survey aimed at identifying surveyed physicians' current practices regarding the reproductive health needs of women with rheumatoid arthritis, psoriasis, or psoriatic arthritis. This survey included 82 rheumatologists and 38 dermatologists from the Czech Republic, Hungary, and Slovakia.ResultsThe proportion of female patients of reproductive age with the moderate-to-severe disease was 10-30% of all patients treated by the respondents. At the time of diagnosis, approximately two-thirds of the respondents discussed family planning with their patients. Rheumatologists collaborated with other specialists more frequently than dermatologists and gynecologist-obstetricians. Half of the rheumatologists revised systemic treatment 6 months before the patient planned to become pregnant, whereas dermatologists appear to act much sooner. Rheumatologists chose systemic glucocorticoids as the first-line treatment for pregnancy flares, whereas dermatologists chose topical corticosteroids. Congresses and interdisciplinary forums were rated the most valuable sources of information by physicians.ConclusionsThere is a need for more holistic, multidisciplinary, collaborative, and integrated communication between clinicians and women of childbearing age. Physicians should consider the implications of these conditions and medical treatment for women of childbearing age and family planning for those with rheumatoid arthritis and psoriatic disease. Patient-centered care that includes patients' reproductive choices should be a routine clinical practice.

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.

Dataset Information

Development of a national survey on foot involvement among people with psoriatic arthritis in Australia using a best practice approach: a survey development protocol.

Publications

Development of a national survey on foot involvement among people with psoriatic arthritis in Australia using a best practice approach: a survey development protocol.

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