Health Equity Considerations for Developing and Reporting Patient-reported Outcomes in Clinical Trials: A Report from the OMERACT Equity Special Interest Group

Petkovic, Jennifer; Barton, Jennifer L.; Flurey, Caroline; Goel, Niti; Bartels, Christie M.; Barnabé, Cheryl; Wit, Maarten de; Lyddiatt, Anne; Lacaille, Diane; Welch, Vivian; Boonen, Annelies; Shea, Beverley; Christensen, Robin; Maxwell, Lara; Campbell, Willemina; Jull, Janet; Toupin‐April, Karine; Singh, Jasvinder A.; Goldsmith, Charles H.; Sreih, Antoine; Pohl, Christoph; Hofstetter, Catherine; Beaton, Dorcas; Buchbinder, Rachelle; Guillemin, Françis; Tugwell, Peter

doi:10.3899/jrheum.160975

Cited by 13 publications

(7 citation statements)

References 32 publications

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“…Rural and remote population groups are acknowledged to be at risk for health inequities as a result of avoidable variations in social, political, cultural, and economic structures ( 1 ), and not only due to inequalities in disease distribution and outcomes alone. The PROGRESS‐Plus framework assists in conceptualizing which population groups are at risk for inequities ( 2 , 3 ) and includes consideration of place of residence. Geography introduces risk for inequities in health outcomes for individuals with rheumatic disease residing in rural and remote locales based on differences in physical environments, social and economic capital, and health care access compared to urban populations.…”

Section: Introductionmentioning

confidence: 99%

Global Rural and Remote Patients With Rheumatoid Arthritis: A Systematic Review

Pianarosa

Chomistek

Hsiao

et al. 2022

Arthritis Care & Research

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Objective Rural and remote patients with rheumatoid arthritis (RA) are at risk for inequities in health outcomes based on differences in physical environments and health care access potential compared to urban populations. The aim of this systematic review was to synthesize epidemiology, clinical outcomes, and health service use reported for global populations with RA residing in rural and remote locations. Methods Medline, Embase, HealthStar, the Cumulative Index to Nursing and Allied Health Literature (CINAHL), and the Cochrane Library were searched from inception to June 2019 using librarian‐developed search terms for RA and rural and remote populations. Peer‐reviewed published manuscripts were included if they reported on epidemiologic, clinical, or health service use outcomes. Results Fifty‐four articles were included for data synthesis, representing studies from all continents. In 11 studies in which there was an appropriate urban population comparator, rural and remote populations were not at increased risk for RA; 1 study reported increased prevalence, and 5 studies reported decreased prevalence in rural and remote populations. Clinical characteristics of rural and remote populations in studies with an appropriate urban comparator showed no significant differences in disease activity measures or disability, but 1 study reported worse physical function and health‐related quality of life in rural and remote populations. Studies reporting on health service use provided evidence that rural and remote residence adversely impacts diagnostic time, ongoing follow‐up, access to RA‐care–related practitioners and services, and variation in medication access and use, with prominent heterogeneity noted between countries. Conclusion RA epidemiology and clinical outcomes are not necessarily different between rural/remote and urban populations within countries. Rural and remote patients face greater barriers to care, which increases the risk for inequities in outcomes.

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Section: Introductionmentioning

confidence: 99%

Global Rural and Remote Patients With Rheumatoid Arthritis: A Systematic Review

Pianarosa

Chomistek

Hsiao

et al. 2022

Arthritis Care & Research

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“…However, patients still experience impairments in their daily life [ 2 ]. One way to measure the impairments from the patient perspective is through patient-reported outcome measures (PROMs), mainly used for research purposes [ 3 ].…”

Section: Introductionmentioning

confidence: 99%

Defining the care delivery value chain and mapping the patient journey in rheumatoid arthritis

et al. 2022

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Rheumatoid Arthritis (RA) is a chronic disease that impacts patients’ quality of life. Sophisticated organization of care delivery drives quality improvement. Therefore, the study objective was establishing a validated process map of the care cycle for RA patients. Hence, increasing transparency and optimizing care delivery and identifying areas of improvement. To map the RA care cycle, the care delivery value chain (CDVC) approach was used as framework to document activities and resources systematically. A mixed method study was conducted where quantitative data on activities were collected from health records and unstructured interviews with medical staff were held. Consequently, the process map was separately validated in a consensus meeting with a delegation of the medical staff and patient advisory board. At the start of the care cycle, the focus is predominantly on defining the treat-to-target strategy and examining disease activity. Towards the monitoring phase, tapering medication and managing the disease through patient-reported outcome measures are becoming increasingly important. Although patient’s functioning, quality of care and patient’s evaluation of received care are monitored, reflection of CDVC and engaging patients in the evaluation process resulted in improvement actions on outcome and process level. Mapping the RA care cycle following a systematic approach, provides insight and transparency in delivered activities, involved resources and the engagement of patients and caregivers at multiple levels, contributing to a system facilitating value-based care delivery. The CDVC framework and applied methodology is recommended in other conditions. Future research will focus at assigning outcomes and costs to activities and evaluating interventions to explore patient value.

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“…Health literacy, which is described as the degree to which individuals have the capacity to obtain, process, and understand basic health information and services necessary to make appropriate health decisions, might also be of relevance to adequate healthcare access [8][9][10]. Recognizing the many social contexts in which the public may encounter health information, health literacy may improve health across the life course [11].…”

Section: Introductionmentioning

confidence: 99%

Identifying Health Equity Factors That Influence the Public’s Perception of COVID-19 Health Information and Recommendations: A Scoping Review

Sayfi

Alayche

Magwood

et al. 2022

IJERPH

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The COVID-19 pandemic has impacted global public health and public trust in health recommendations. Trust in health information may waver in the context of health inequities. The objective of this scoping review is to map evidence on public perceptions of COVID-19 prevention information using the PROGRESS-Plus health equity framework. We systematically searched the MEDLINE, Cochrane Central Register of Controlled Trials, PsycInfo, and Embase databases from January 2020 to July 2021. We identified 792 citations and 31 studies published in 15 countries that met all inclusion criteria. The majority (30/31; 96.7%) of the studies used an observational design (74.2% cross-sectional, 16.1% cohort, 6.5% case study, 3.2% experimental trials). Most studies (61.3%) reported on perception, understanding, and uptake, and 35.5% reported on engagement, compliance, and adherence to COVID-19 measures. The most frequently reported sources of COVID-related information were social media, TV, news (newspapers/news websites), and government sources. We identified five important equity factors related to public trust and uptake of recommendations: education and health literacy (19 studies; 61.3%), gender (15 studies; 48.4%), age (15 studies; 48.4%), socioeconomic status (11 studies; 35.5%), and place of residence (10 studies; 32.3%). Our review suggests that equity factors play a role in public perception of COVID-19 information and recommendations. A future systematic review could be conducted to estimate the impact of equity factors on perception and behavior outcomes.

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Health Equity Considerations for Developing and Reporting Patient-reported Outcomes in Clinical Trials: A Report from the OMERACT Equity Special Interest Group

Cited by 13 publications

References 32 publications

Global Rural and Remote Patients With Rheumatoid Arthritis: A Systematic Review

Global Rural and Remote Patients With Rheumatoid Arthritis: A Systematic Review

Defining the care delivery value chain and mapping the patient journey in rheumatoid arthritis

Identifying Health Equity Factors That Influence the Public’s Perception of COVID-19 Health Information and Recommendations: A Scoping Review

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