Rethinking the Difficult Patient: Formative Qualitative Study Using Participatory Theater to Improve Physician-Patient Communication in Rheumatology.

BACKGROUND: Effective physician-patient communication is crucial for positive health outcomes for patients with chronic diseases. However, current methods of physician education in communication are often insufficient to help physicians understand how patients' actions are influenced by the contexts within which they live. An arts-based participatory theater approach can provide the necessary health equity framing to address this deficiency. OBJECTIVE: The aim of this study was to develop, pilot, and conduct a formative evaluation of an interactive arts-based communication skills intervention for graduate-level medical trainees grounded in a narrative representative of the experience of patients with systemic lupus erythematosus. METHODS: We hypothesized that the delivery of interactive communication modules through a participatory theater approach would lead to changes in both attitudes and the capacity to act on those attitudes among participants in 4 conceptual categories related to patient communication (understanding social determinants of health, expressing empathy, shared decision-making, and concordance). We developed a participatory, arts-based intervention to pilot this conceptual framework with the intended audience (rheumatology trainees). The intervention was delivered through routine educational conferences at a single institution. We conducted a formative evaluation by collecting qualitative focus group feedback to evaluate the implementation of the modules. RESULTS: Our formative data suggest that the participatory theater approach and the design of the modules added value to the participants' learning experience by facilitating interconnection of the 4 communication concepts (eg, participants were able to gain insight into both what physicians and patients were thinking about on the same topic). Participants also provided several suggestions for improving the intervention such as ensuring that the didactic material had more active engagement and considering additional ways to acknowledge real-world constraints (eg, limited time with patients) in implementing communication strategies. CONCLUSIONS: Our findings from this formative evaluation of communication modules suggest that participatory theater is an effective method for framing physician education with a health equity lens, although considerations in the realms of functional demands of health care providers and use of structural competency as a framing concept are needed. The integration of social and structural contexts into the delivery of this communication skills intervention may be important for the uptake of these skills by intervention participants. Participatory theater provided an opportunity for dynamic interactivity among participants and facilitated greater engagement with the communication module content.

MEW network self-management program characteristics and lessons learned through the RE-AIM framework.

RATIONALE: The promotion of evidence-based self-management support for people living with chronic conditions such as epilepsy is a public health priority. Epilepsy self-management encompasses three general areas: (1) treatment management, (2) seizure management, and (3) lifestyle management. Interventions focusing on self-management have increased quality of life and adherence to treatment. This study assesses and synthesizes the Managing Epilepsy Well Network (MEWN) program implementation experiences using the RE-AIM framework. This research informs the quality and rigor of MEWN program dissemination and implementation efforts to assess whether these programs are being implemented and their scalability. METHODS: The study data were derived from a MEWN Self-management Program Survey conducted with currently active MEWN researchers through an online survey and review of program publications and archival documents. Survey data were obtained from either the principal investigator or study team for the UPLIFT, HOBSCOTCH, SMART, MINDSET, TIME, and PACES programs. The survey questionnaire included 6 sections consisting of 68 questions and focused on the RE-AIM dimensions and respondent characteristics. The RE-AIM dimensions included: (1) Reach, (2) Effectiveness, (3) Adoption (number of and type of adopting sites), (4) Implementation (retention rate, barriers to implementation), and (5) Maintenance. RESULTS: Across the MEWN programs, participation (44-120 individuals) and delivery methods (community, clinic, or asynchronous; group or individual) ranged with most programs predominantly reaching White or African American participants. Common program outcome measures included clinical outcomes (e.g., depression, quality of life, seizure frequency) and indicators of self-management behaviors (e.g., problem-solving; self-efficacy). Initial efficacy trials suggested programs were effective in changing some of their targeted outcomes (effectiveness). Most programs were implemented in clinical settings and several programs are being replicated or adapted to different geographical (e.g., urban, rural, suburban) or demographic (e.g., race, age) settings (adoption). Program delivery methods involved a mixture of program staff, peer educators, and researchers. Implementation enabling factors included partnerships with local epilepsy organizations and the inclusion of peer educators. Retention rates for all programs averaged 83.6%. Internal barriers included recruitment and lack of sufficient resources for participants. External barriers included clinical staff buy-in, staffing, and insufficient funding for support staff. Despite uncertain funding, all programs offered next steps to sustain their initiatives such as packaging their programs, initiating adoption with regional organizations, and supporting organizational readiness (maintenance). Dissemination efforts included partnering with other organizations, provision of training and technical assistance, and partnering with national organizations on grant opportunities to scale up existing programs. CONCLUSION: These data showcase the impact of the MEWN self-management interventions on health and quality of life. These programs are employing training, readiness assessment, technical assistance, and development of partnerships to increase program scalability. Finally, program adaptations are being conducted to expand the interventions to other populations to address health inequalities. The lessons learned are critical for other interventions attempting to increase the translation of their programs to other settings.

Structural and health system determinants of health outcomes in systemic lupus erythematosus: Understanding the mechanisms underlying health disparities.

Chronic diseases are increasingly responsible for the burden of health outcomes across the world. However, there is also increasing recognition that patterns of chronic disease outcomes (e.g., mortality, quality of life, etc.) have inequities across race, gender, and socioeconomic groups that cannot be solely attributed to these determinants. There is a need for an organizing framework which centers fundamental causes of health disparities that may better guide future work in centering these mechanisms and moving beyond acknowledgment of health disparities. In this paper, we synthesize several concepts from health disparities literature into a conceptual framework for understanding the interplay of patients' lived experiences, the health care system and structural determinants. Our framework suggests that (1) structural factors influence the health care system, the patient, the health care provider, and the provider-patient relationship through process of subordination and (2) that structurally competent actions are critical to reducing health inequities. The addition of subordination to theoretical frameworks involving health equity and social determinants of health, along with engagement with concepts of structural competency suggest several systems level changes to improve health outcomes.

Development of a digital toolkit to improve quality of life of patients with systemic lupus erythematosus.

OBJECTIVE: The purpose of this manuscript is to detail development and initial usability testing of an e-toolkit designed to provide skills and knowledge around self-management behaviors for individuals living with systemic lupus erythematosus. METHODS: Researchers worked with a steering committee of patients and providers to (1) develop a clickable prototype of an e-toolkit and (2) conduct alpha (individuals not affiliated with an academic clinic as patient or provider) and beta (individual patients with systemic lupus erythematosus as well as members of the clinic healthcare team and individuals who work in patient advocacy organizations) usability testing through semistructured interviews. RESULTS: During the review of the e-toolkit, the feedback provided by participants in both alpha and beta groups centered on two overarching themes: (1) improving user interface and materials and (2) integration of information and supports between toolkit and clinical personnel. CONCLUSION: Digital approaches that are tailored to individual symptom variation and integrated with a clinical system have the opportunity to enhance ongoing clinical care. These findings support movement toward integrated, team-based care models, tailored digital resources, and use of expanded virtual interaction options to ensure on-going engagement between healthcare providers and systemic lupus erythematosus patients.

Exploring intentional medication non-adherence in patients with systemic lupus erythematosus: the role of physician-patient interactions.

OBJECTIVE: Medication non-adherence contributes to worse health outcomes among SLE patients. The underlying mechanisms that drive medication non-adherence are poorly understood. The purpose of this study was to explore possible mechanisms of medication non-adherence by eliciting patient experiences. METHODS: Consented adult patients with ACR- or SLICC-classified SLE were recruited. Ten semi-structured interviews were conducted across six participants. Interviews were audio recorded, transcribed, and analysed using an iterative process. The findings were presented to an interactive public forum with SLE patients, family members and friends of patients, and health-care professionals to assess validity and for elaboration of the concepts developed. RESULTS: The following three interrelated themes emerged from the interviews. First, why do rheumatologists not know more about lupus or share what they do know with their patients? Second, why do I have to take so many drugs and why do the drugs not work? Third, if my rheumatologist cannot communicate with me, why should I follow the prescribed medication regimen? CONCLUSION: Our exploratory findings lay out a possible underlying logic by which patients might choose intentionally to engage with medication non-adherence behaviours. Patients suggested that poor communication with their rheumatologists along with a lack of validation of their symptoms contributed to them not valuing the recommendations of physicians. This also contributed to development of a cynical outlook and little belief that medication would improve their condition. Although further work is needed to validate these findings, our preliminary work suggests that interventions focusing on the development of communication skills among both patients and rheumatologists are necessary to reduce medication non-adherence.

Patient Perspective on Using Digital Resources to Address Unmet Needs in Systemic Lupus Erythematosus.

OBJECTIVE: The clinical variability of systemic lupus erythematosus (SLE) caused by the unpredictability of flares contributes to patients experiencing a diminished sense of social support. Digital health interventions (DHIs) have the potential to improve patients' social support but have yet to be studied extensively in SLE. Our objective was to assess general and SLE-specific internet usage as well as specific suggestions for SLE-related digital resources and tools among patients with SLE at the Washington University Lupus Clinic. METHODS: Fifty-six participants were recruited from the Washington University Lupus Clinic. Ten-minute structured interviews consisting of multiple choice and open-ended questions were conducted. A descriptive statistical analysis was conducted with the quantitative data, while the qualitative data were analyzed using an open coding approach. RESULTS: Nearly all respondents indicated having access to the internet (98.2%). Eighty percent currently use the internet for their SLE. The qualitative data indicate that patients with SLE use the internet for understanding flares and changes in their symptoms and/or laboratory results, want an increased variety of SLE information online, have a desire to exchange personal experiences and knowledge of SLE with others, and desire increased diversity in the methods of delivering digital SLE information. CONCLUSION: Our findings support the continued use of DHIs for patients with SLE. We believe that these findings will aid the future development of DHIs tailored to patients with SLE.

" Not Having the Real Support That We Need": Patients' Experiences with Ambiguity of Systemic Lupus Erythematosus and Erosion of Social Support.

OBJECTIVE: The patient-specific experience of living with SLE is underreported, particularly when studying factors associated with health-related quality of life (HRQOL). Recent work has suggested that biomedical interventions are only partially predictive of HRQOL measures. A qualitative analysis of patient-specific experiences can uncover additional root causes of impaired HRQOL in SLE populations beyond the scope of quantitative questionnaires. METHODS: Consented adult patients with American College of Rheumatology- or Systemic Lupus International Collaborating Clinics-classified SLE were recruited. Ten semi-structured interviews were conducted across six participants. Interviews were audio recorded, transcribed, and analyzed using an iterative process. Findings were presented to an interactive public forum with SLE patients family members and friends of patients, and health care professionals to assess accuracy. RESULTS: Four themes emerged from the interviews: 1) ambiguity, inconsistency, and lack of symptom predictability due to SLE disease courses, 2) poor communication with family/friends/partners, and poor bi-directional communication between health care providers and patients (informational support), 3) lack of validation for patients' experiences (appraisal support), and 4) problematic aspects of social support including negative support and patients' inability to reciprocate support due to role changes. Data also indicate a reciprocal association between appraisal and informational sources of support. CONCLUSION: Findings indicate that inadequate appraisal and informational support from informal and formal sources are salient factors influencing HRQOL among SLE patients. Findings also point to the necessity of integrating community organizations, physicians, and friends and family of SLE patients into capacity building interventions aimed at enhancing these sources of social support.