Objective
To develop updated guidelines for the pharmacologic management of rheumatoid arthritis.
Methods
We developed clinically relevant population, intervention, comparator, and outcomes (PICO) ...questions. After conducting a systematic literature review, the Grading of Recommendations Assessment, Development and Evaluation (GRADE) approach was used to rate the certainty of evidence. A voting panel comprising clinicians and patients achieved consensus on the direction (for or against) and strength (strong or conditional) of recommendations.
Results
The guideline addresses treatment with disease‐modifying antirheumatic drugs (DMARDs), including conventional synthetic DMARDs, biologic DMARDs, and targeted synthetic DMARDs, use of glucocorticoids, and use of DMARDs in certain high‐risk populations (i.e., those with liver disease, heart failure, lymphoproliferative disorders, previous serious infections, and nontuberculous mycobacterial lung disease). The guideline includes 44 recommendations (7 strong and 37 conditional).
Conclusion
This clinical practice guideline is intended to serve as a tool to support clinician and patient decision‐making. Recommendations are not prescriptive, and individual treatment decisions should be made through a shared decision‐making process based on patients’ values, goals, preferences, and comorbidities.
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BFBNIB, FZAB, GIS, IJS, KILJ, NLZOH, NUK, OILJ, SAZU, SBCE, SBMB, UL, UM, UPUK
No fatigue-specific programs exist for people with systemic sclerosis (SSc) despite the burden of fatigue and negative impact on daily activities. This study used a convergent parallel mixed methods ...design to evaluate the impact of an adapted virtual intervention, Fatigue and Activity Management Education in Systemic Sclerosis (FAME-iSS), in the United States.
Eighteen people with SSc participated in three separate six-week FAME-iSS programs. Participants completed the modified Fatigue Impact Scale (m-FIS), the Self-Efficacy for Performing Energy Conservation Strategies Assessment (SEPESCA), the Patient-Reported Outcomes Measurement Information System (PROMIS) Self-Efficacy for Managing Symptoms, and the Hospital Anxiety and Depression Scale (HADS) before, immediately after, and three months post intervention. Data were analyzed using descriptive and nonparametric inferential statistics. Participants' perceptions of the program and their use of fatigue management strategies were qualitatively analyzed using content analysis.
Eighty-nine percent of participants were women with a mean ± SD age of 52.0 ± 11.6 years and a mean ± SD disease duration of 13.7 ± 14.5 years, and more than 70% had a college degree. Significant improvements were observed for self-efficacy on the PROMIS Self-Efficacy for Managing Symptoms (P = 0.002) and SEPESCA (P = 0.016) immediately post intervention, which continued to significantly improve up to the three-month follow-up (P = 0.006 and 0.035, respectively). Significant improvements were also observed for the m-FIS between baseline and the three-month follow-up (P = 0.029). Participants reported a deeper understanding of fatigue and that they liked sharing strategies and experiences with each other along with the facilitator, citing that "there was a power in our group because we had a common condition."
FAME-iSS resulted in improvements in the impact of fatigue and self-efficacy for managing symptoms and performing energy conservation strategies. Feedback was positive, and the virtual format allowed for greater accessibility and sharing of strategies.
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FZAB, GIS, IJS, KILJ, NLZOH, NUK, OILJ, SAZU, SBCE, SBMB, UL, UM, UPUK
Theory and correlational research indicate organizational leadership and climate are important for successful implementation of evidence-based practices (EBPs) in healthcare settings; however, ...experimental evidence is lacking. We addressed this gap using data from the WISDOM (Working to Implement and Sustain Digital Outcome Measures) hybrid type III effectiveness-implementation trial. Primary outcomes from WISDOM indicated the Leadership and Organizational Change for Implementation (LOCI) strategy improved fidelity to measurement-based care (MBC) in youth mental health services. In this study, we tested LOCI's hypothesized mechanisms of change, namely: (1) LOCI will improve implementation and transformational leadership, which in turn will (2) mediate LOCI's effect on implementation climate, which in turn will (3) mediate LOCI's effect on MBC fidelity.
Twenty-one outpatient mental health clinics serving youth were randomly assigned to LOCI plus MBC training and technical assistance or MBC training and technical assistance only. Clinicians rated their leaders' implementation leadership, transformational leadership, and clinic implementation climate for MBC at five time points (baseline, 4-, 8-, 12-, and 18-months post-baseline). MBC fidelity was assessed using electronic metadata for youth outpatients who initiated treatment in the 12 months following MBC training. Hypotheses were tested using longitudinal mixed-effects models and multilevel mediation analyses.
LOCI significantly improved implementation leadership and implementation climate from baseline to follow-up at 4-, 8-, 12-, and 18-month post-baseline (all ps < .01), producing large effects (range of ds = 0.76 to 1.34). LOCI's effects on transformational leadership were small at 4 months (d = 0.31, p = .019) and nonsignificant thereafter (ps > .05). LOCI's improvement of clinic implementation climate from baseline to 12 months was mediated by improvement in implementation leadership from baseline to 4 months (proportion mediated p
= 0.82, p = .004). Transformational leadership did not mediate LOCI's effect on implementation climate (p = 0.136). Improvement in clinic implementation climate from baseline to 12 months mediated LOCI's effect on MBC fidelity during the same period (p
= 0.71, p = .045).
LOCI improved MBC fidelity in youth mental health services by improving clinic implementation climate, which was itself improved by increased implementation leadership. Fidelity to EBPs in healthcare settings can be improved by developing organizational leaders and strong implementation climates.
ClinicalTrials.gov identifier: NCT04096274. Registered September 18, 2019.
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IZUM, KILJ, NUK, PILJ, PNG, SAZU, UL, UM, UPUK
The objective of this study is to assess the impact of inflammatory arthritis on young adults’ activity participation using quantitative and qualitative methods to advance the field’s ...conceptualization of functional status. Young adults diagnosed with juvenile idiopathic arthritis or rheumatoid arthritis completed (1) the Health Assessment Questionnaire-Disability Index to determine functional status and (2) the day reconstruction method to explore experiential dimensions of function, including functional performance, functional satisfaction, and severity of arthritis symptoms during activities on the previous day. Bivariate analyses were conducted to examine relationships between functional status, experiential variables, and demographic variables. Open-ended questions were provided for participants to report ways that arthritis affected their participation that were not otherwise reflected within survey questions; responses were numerically coded using summative content analysis. Among 37 participants (24.8 ± 3.3 years old), 70% reported moderate-to-severe disability. On average, participants experienced pain, stiffness, or fatigue for more than 50% of their waking hours. Functional status significantly correlated with functional performance (
r
= − 0.39,
p
= 0.02) and satisfaction (
r
= − 0.39,
p
= 0.02), yet did not correlate with stiffness or fatigue severity or duration of symptoms throughout the day. Participants described strategies that improved their ability to participate in certain activities but reduced their overall quality of activity engagement and caused emotional distress. Young adults with arthritis may experience more significant functional limitations than previously reported. Traditional measures of functional assessment may not capture experiential components of activity that affect participation, such as severity of stiffness or fatigue or the duration of symptoms throughout the day.
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EMUNI, FIS, FZAB, GEOZS, GIS, IJS, IMTLJ, KILJ, KISLJ, MFDPS, NLZOH, NUK, OBVAL, OILJ, PNG, SAZU, SBCE, SBJE, SBMB, SBNM, UKNU, UL, UM, UPUK, VKSCE, ZAGLJ
We investigated the feasibility and acceptability of an occupational therapy intervention targeting diabetes management for underserved young adults.
Eight participants completed the intervention and ...a battery of assessments at baseline and after the intervention. At completion, the participants and occupational therapist were interviewed about their experiences with the study. Four categories of assessment questions were used to guide the study: process, resource, management, and scientific.
Successes included recruitment; fulfillment of tasks by staff and partnering clinics; adequate space, financial support, and equipment; and meaningfulness of the intervention for participants. Challenges included scheduling participants for the intervention and follow-up focus groups and providing client centeredness and flexibility while reducing burden on the intervener.
This feasibility study allowed us to make necessary revisions to our study protocol before implementing a larger pilot study.
Background/Aims
Research is needed to identify promising recruitment strategies to reach and engage diverse young adults in diabetes clinical research. The aim of this study was to examine the ...relative strengths and weaknesses of three recruitment strategies used in a diabetes self-management clinical trial: social media advertising (Facebook), targeted mailing, and in-person solicitation of clinic patients.
Methods
Strategies were compared in terms of (1) cost-effectiveness (i.e. cost of recruitment/number of enrolled participants), (2) ability to yield participants who would not otherwise be reached by alternative strategies, and (3) likelihood of participants recruited through each strategy to adhere to study procedures. We further explored the appeal (overall and among age and gender subgroups) of social media advertisement features.
Results
In-person recruitment of clinic patients was overall the most cost-effective strategy. However, differences in demographic, clinical, and psychosocial characteristics of participants recruited via different strategies suggest that the combination of these approaches yielded a more diverse sample than would any one strategy alone. Once successfully enrolled, there was no difference in study completion and intervention adherence between individuals recruited by the three recruitment strategies.
Conclusions
Ultimately, the utility of a recruitment strategy is defined by its ability to effectively attract people representative of the target population who are willing to enroll in and complete the study. Leveraging a variety of recruitment strategies appears to produce a more representative sample of young adults, including those who are less engaged in diabetes care.
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NUK, OILJ, SAZU, UKNU, UL, UM, UPUK
The COVID-19 pandemic has remarkably altered community mental health service delivery through the rapid implementation of telehealth. This study reports provider perspectives on the impact that ...COVID-19 and the transition to telehealth had on their work and their ability to deliver evidence-based practices (EBPs).
Providers (n = 93) completed online surveys with quantitative measures and open-ended items exploring their reactions to COVID-19 and to the transition to providing services via telehealth.
Perceptions of personal risk and rumination around COVID-19 were low, while telehealth was viewed positively by providers. Three major themes emerged regarding the major impacts of COVID-19 on work: (1) the altered nature of interactions between patient/client and provider due to telehealth implementation, (2) changes in provider expectations regarding productivity, and (3) challenges maintaining work-life balance. In regard to the major impacts of COVID-19 on EBP delivery, three themes emerged: (1) increased difficulty delivering certain therapies via telehealth, (2) potential limitations to session confidentiality, and (3) challenge of engaging children in telehealth.
In the context of the COVID-19 pandemic, community mental health providers continued to engage with clients and deliver EBPs while navigating a number of changes related to the rapid transition to and implementation of telehealth. This study highlights the need for further work on what supports providers need to effectively engage with clients and deliver EBPs via telehealth, and has implications for how telehealth is sustained or de-implemented post-COVID-19.
Although studies have demonstrated that implementation leadership and climate are important constructs in predicting evidence-based practice (EBP) implementation, concrete descriptions of how they ...operate during organizational implementation efforts are lacking. This case study fills that gap through an in-depth description of an organization with effective implementation leadership that successfully built a strong implementation climate. This case study provides an illustration of implementation leadership and climate in tangible, replicable terms to assist managers, practitioners, and researchers in addressing the organizational context in their own implementation projects.
A single organization, intrinsic case study was employed to paint a multifaceted picture of how one organization leveraged implementation leadership to strengthen a climate for the successful implementation of digital measurement-based care. The case was drawn from a cluster-randomized trial designed to test the effects of a leadership-focused implementation strategy on youth-level fidelity and clinical outcomes of digital measurement-based care. Following the completion of the trial, case study activities commenced. Descriptive summaries of multiple data sources (including quantitative data on implementation leadership and climate, coaching call and organizational alignment meeting recordings and notes, and development plans) were produced and revised iteratively until consensus was reached. Leadership actions were analyzed for corresponding dimensions of implementation leadership and climate.
Specific actions organizational leaders took, as well as the timing specific strategies were enacted, to create a climate for implementation are presented, along with lessons learned from this experience.
This case study offers concrete steps organizational leaders took to create a consistent and aligned message that the implementation of a specific EBP was a top priority in the agency. The general approach taken to create an implementation climate provides several lessons for leaders, especially for EBPs that have broad implications across an organization.
Background The purpose of this study was to identify reproductive health knowledge gaps and topics that concern adolescent and young adult (AYA) women with pediatric rheumatic diseases and their ...parents. Methods Data collection occurred in two cohorts. In the first cohort, young women (15-20 years old) with pediatric-onset rheumatic conditions and their parents were recruited from a single, academic pediatric rheumatology center. In the second cohort, young women (18-25 years old) with pediatric-onset rheumatic conditions were recruited from a national conference for families with pediatric rheumatic diseases. This resulted in 20 adolescents and young adults (18.3 + or - 2.4 years old), and 7 parent focus group participants. Focus group leaders facilitated discussions centered on reproductive health topics that participants identified as important, their sources of knowledge, and preferences for patient education and ongoing follow-up. Data were summarized independently by 4 researchers to reduce potential bias and subsequently analyzed using rapid qualitative analysis. Results All participants, regardless of diagnosis, medication, current sexual activity, or current intention to have children, expressed concern about the effect of their rheumatic condition and medications on fertility, risks to mother and child during and after pregnancy, and obtaining safe and effective contraception. Additionally, some participants discussed the burden of disease and its potential impact on motherhood. Finally, participants raised concern around the effect of disease and medication on routine reproductive health care, such as menstrual cycles, feminine self-care, and preventive exams. Three themes emerged: 1) participants had been advised to avoid unplanned pregnancy, however reported receiving inadequate explanation to support this instruction, 2) participants conceptualized reproductive health as tied to rheumatic disease management and thus suggested ways to include family members in discussion, and 3) rheumatology practitioners were not considered a resource of reproductive health information. Conclusions Young women and their parents reported dissatisfaction with the availability, quantity, and quality of reproductive health information they received, particularly when related to their pediatric-onset rheumatic disease. These findings provide an initial step in understanding the patient perspective of reproductive health in rheumatology, and how to address these concerns in the care of young women with rheumatic diseases. Keywords: Reproductive health, Sexual health, Family planning, Adolescence, Young adulthood, Rheumatic disease, Transitional care, Pediatric rheumatology
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IZUM, KILJ, NUK, PILJ, PNG, SAZU, UL, UM, UPUK
Objective
Patients with autoimmune rheumatic diseases (ARDs) are at greater risk of COVID‐19 infection and hospitalization, increasing the stress and uncertainty already associated with unpredictable ...conditions. These may be heightened for patients with ARDs from underrepresented minority backgrounds. This study aimed to explore patient experiences and ARD‐related challenges during the first year of the pandemic.
Methods
Between December 2020 and May 2021, 60‐minute semistructured interviews were conducted with English‐ and Spanish‐speaking adults, aged 18 years or older with self‐reported diagnosis of ARD, via phone or videoconferencing using an interview guide on living with an ARD during the pandemic. Analysis combined methods of phenomenology and content analysis through three steps: 1) summarizing interviews, 2) iteratively refining units of meaning, and 3) axial and selective coding to determine cross‐cutting themes. Study procedures were conducted by a multidisciplinary team, a majority also diagnosed with ARDs.
Results
The research team interviewed 22 patients (39.8 ± 15.7 years old; 82.8% female; 31.8% Hispanic or Latino/a/x) with ARDs. Themes included 1) information access and understanding, 2) problem solving access to health care, 3) balancing risks, and 4) mental health implications. Within these themes, patients from underrepresented minority backgrounds faced unique challenges.
Conclusion
Patients with ARDs require direct and timely communication about their risk of COVID‐19 morbidity and mortality and require increased support for psychosocial and ARD‐related implications of the pandemic. Health care systems must consider ways to support patients who are balancing chronic disease management with risk reduction for contracting emerging COVID‐19 variants.
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FZAB, GIS, IJS, KILJ, NLZOH, NUK, OILJ, SAZU, SBCE, SBMB, UL, UM, UPUK
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