Point-of-care dashboards promote coproduction of healthcare services for patients with inflammatory bowel disease.

BACKGROUND: Coproduction of healthcare services by patients and professionals is seen as an increasingly important mechanism to support person-centred care delivery. Coproduction invites a deeper understanding of what persons sometimes called 'patients' bring to development of a service. Yet, little is known about tools that may help elicit that information. OBJECTIVE: Our objective was to explore potential benefits and limitations of an electronic pre-visit survey (PVS) and dashboard by studying uptake and experiences within the inflammatory bowel disease (IBD) community. METHODS: We conducted a mixed-method evaluation of patients and clinicians using the IBD Qorus PVS and dashboard at 24 programmes participating in the IBD Qorus learning health system. We analysed (i) descriptive statistics and thematic analyses of 537 patient surveys, (ii) semi-structured interviews with seven patients and six care teams and (iii) usage data collected between 25 March 2019 and 26 April 2020. RESULTS: Nearly two-thirds (64%; n = 38) of clinicians enrolled ≥25 patients into IBD Qorus; 59% (n = 29) of clinicians received ≥25 electronic PVS, with 3834 PVS received during the study period. Post-visit evaluation surveys were completed by patients following 26% (n = 993) of PVS completions. Among patients who reported using the dashboard for 1 or more months (n = 537), two-thirds (65%, n = 344) used the dashboard at a clinic visit and one-third used it outside the clinic (33%, n = 176). Most patients who used the dashboard during a clinic visit said it was helpful in discussions with their clinician (82%), in talking about what matters most (76%) and in making healthcare decisions (71%). Patients using the dashboard during the clinic visit reported higher levels of shared decision-making than those who did not use the dashboard (82% vs. 65%, P < 0.001). This relationship remained significant after controlling for receipt of care at a clinic with the highest levels of patient-reported shared decision-making (odds ratio: 2.1; confidence interval: 1.3-3.3). Patients and clinicians found the greatest value in using the PVS and dashboard to share concerns and symptoms, prepare for a visit and support discussions during the visit. The lack of integration with existing electronic health records (EHRs) limited clinician usage of the PVS and dashboard. CONCLUSIONS: The PVS and dashboard created a shared language, which supported coproduction and shared decision-making and facilitated a shared understanding of goals, concerns, symptoms and well-being. To support uptake, future systems should reduce implementation burden for healthcare professionals and integrate seamlessly with existing EHR systems and workflows.

Developing a pathway for high-value, patient-centered total joint arthroplasty.

BACKGROUND: Total joint arthroplasty (TJA) is one of the most widely performed elective procedures; however, there are wide variations in cost and quality among facilities where the procedure is performed. QUESTIONS/PURPOSES: The purposes of this study were to (1) develop a generalizable clinical care pathway for primary TJA using inputs from clinical, academic, and patient stakeholders; and (2) identify system- and patient-level processes to provide safe, effective, efficient, and patient-centered care for patients undergoing TJA. METHODS: We used a combination of quantitative and qualitative methods to design a care pathway that spans 14 months beginning with the presurgical office visit and concluding 12 months after discharge. We derived care suggestions from interviews with 16 hospitals selected based on readmission rates, cost, and quality (n = 10) and author opinion (n = 6). A 32-member multistakeholder panel refined the pathway during a 1-day workshop. Participants were selected based on leadership in orthopaedic (n = 4) and anesthesia (n = 1) specialty societies; involvement in organizations specializing in safety and high reliability care (n = 3), lean production/consumption of care (n = 3), and patient experience of care (n = 3); membership in an interdisciplinary care team of a hospital selected for interviewing (n = 8); recent receipt of a TJA (n = 1); and participation in the pathway development team (n = 9). RESULTS: The care pathway includes 40 suggested processes to improve care, 37 techniques to reduce waste, and 55 techniques to improve communication. Central themes include standardization and process improvement, interdisciplinary communication and collaboration, and patient/family engagement and education. Selected recommendations include standardizing care protocols and staff roles; aligning information flow with patient and process flow; identifying a role accountable for care delivery and communication; managing patient expectations; and stratifying patients into the most appropriate care level. CONCLUSIONS: We developed a multidisciplinary clinical care pathway for patients undergoing TJA based on principles of high-value care. The pathway is ready for clinical testing and context-specific adaptation. LEVEL OF EVIDENCE: Level V, therapeutic study. See the Instructions for Authors for a complete description of levels of evidence.

The rules of engagement: physician engagement strategies in intergroup contexts.

PURPOSE: Recognition of the importance and difficulty of engaging physicians in organisational change has sparked an explosion of literature. The social identity approach, by considering engagement in terms of underlying group identifications and intergroup dynamics, may provide a framework for choosing among the plethora of proposed engagement techniques. This paper seeks to address this issue. DESIGN/METHODOLOGY/APPROACH: The authors examined how four disparate organisations engaged physicians in change. Qualitative methods included interviews (109 managers and physicians), observation, and document review. FINDINGS: Beyond a universal focus on relationship-building, sites differed radically in their preferred strategies. Each emphasised or downplayed professional and/or organisational identity as befit the existing level of inter-group closeness between physicians and managers: an independent practice association sought to enhance members' identity as independent physicians; a hospital, engaging community physicians suspicious of integration, stressed collaboration among separate, equal partners; a developing integrated-delivery system promoted alignment among diverse groups by balancing "systemness" with subgroup uniqueness; a medical group established a strong common identity among employed physicians, but practised pragmatic co-operation with its affiliates. RESEARCH LIMITATIONS/IMPLICATIONS: The authors cannot confirm the accuracy of managers perceptions of the inter-group context or the efficacy of particular strategies. Nonetheless, the findings suggested the fruitfulness of social identity thinking in approaching physician engagement. PRACTICAL IMPLICATIONS: Attention to inter-group dynamics may help organisations engage physicians more effectively. ORIGINALITY/VALUE: This study illuminates and explains variation in the way different organisations engage physicians, and offers a theoretical basis for selecting engagement strategies.

A Web-Based Peer Support Network to Help Care Partners of People With Serious Illness: Co-Design Study.

BACKGROUND: Care partners of people with serious illness experience significant challenges and unmet needs during the patient's treatment period and after their death. Learning from others with shared experiences can be valuable, but opportunities are not consistently available. OBJECTIVE: This study aims to design and prototype a regional, facilitated, and web-based peer support network to help active and bereaved care partners of persons with serious illness be better prepared to cope with the surprises that arise during serious illness and in bereavement. METHODS: An 18-member co-design team included active care partners and those in bereavement, people who had experienced serious illness, regional health care and support partners, and clinicians. It was guided by facilitators and peer network subject-matter experts. We conducted design exercises to identify the functions and specifications of a peer support network. Co-design members independently prioritized network specifications, which were incorporated into an early iteration of the web-based network. RESULTS: The team prioritized two functions: (1) connecting care partners to information and (2) facilitating emotional support. The design process generated 24 potential network specifications to support these functions. The highest priorities included providing a supportive and respectful community; connecting people to trusted resources; reducing barriers to asking for help; and providing frequently asked questions and responses. The network platform had to be simple and intuitive, provide technical support for users, protect member privacy, provide publicly available information and a private discussion forum, and be easily accessible. It was feasible to enroll members in the ConnectShareCare web-based network over a 3-month period. CONCLUSIONS: A co-design process supported the identification of critical features of a peer support network for care partners of people with serious illnesses in a rural setting, as well as initial testing and use. Further testing is underway to assess the long-term viability and impact of the network.

The Cystic Fibrosis Learning Network: A mixed methods evaluation of program goals, attributes, and impact.

Introduction: The Cystic Fibrosis (CF) Foundation sponsored the design, pilot testing, and implementation of the CF Learning Network (CFLN) to explore how the Foundation's Care Center Network (CCN) could become a learning health system. Six years after the design, the Foundation commissioned a formative mixed methods evaluation of the CFLN to assess: CFLN participants' understanding of program goals, attributes, and perceptions of current and future impact. Methods: We performed semi-structured interviews with CFLN participants to identify perceived goals, attributes, and impact of the network. Following thematic analyses, we developed and distributed a survey to CFLN members and a matched sample of CCN programs to understand whether the themes were unique to the CFLN. Results: Interviews with 24 CFLN participants were conducted. Interviewees identified the primary CFLN goal as improving outcomes for people living with CF, with secondary goals of providing training in quality improvement (QI), creating a learning community, engaging all stakeholders in improvement, and spreading best practices to the CCN. Project management, use of data, common QI methods, and the learning community were seen as critical to success. Survey responses were collected from 103 CFLN members and 25 CCN members. The data revealed that CFLN respondents were more likely than CCN respondents to connect with other CF programs, routinely use data for QI, and engage patient and family partners in QI. Conclusions: Our study suggests that the CFLN provides value beyond that achieved by the CCN. Key questions remain about whether spread of the CFLN could improve outcomes for more people living with CF.

Enhancing Care Partnerships Using a Rheumatology Dashboard: Bringing Together What Matters Most to Both Patients and Clinicians.

OBJECTIVE: Dashboards can support person-centered care by helping people partner with their clinicians to coproduce care based on preferences, shared decision-making, and evidence-based treatments. We engaged caregivers of children with juvenile idiopathic arthritis (JIA), adults with rheumatoid arthritis (RA), and clinicians in a pilot study to assess their experiences and the utility and impact of an electronic previsit questionnaire and point-of-care dashboard to support coproduction of rheumatology care. METHODS: We employed a mixed-methods design to assess users' perceptions of a customized electronic health record rheumatology module at four pediatric rheumatology practices and two adult rheumatology practices. We surveyed a convenience sample of caregivers of children with JIA (n = 113), adults with RA (n = 116), and clinicians (n = 12). We conducted semistructured interviews with 13 caregivers and patients and six care teams. Experiences were evaluated using descriptive statistics and thematic analyses. RESULTS: Caregivers of children with JIA and adults with RA reported the dashboards were useful during discussions (88%) and helped them talk about what mattered most (82%), make health care decisions (83%), and create a treatment plan (77%). Clinicians provided similar feedback. Two-thirds (67%) of caregivers and adults and 55% of clinicians would recommend the dashboard to peers. System usability scores (77.1 ± 15.6) were above average. Dashboards helped users make sense of health information, communicate more effectively, and make decisions. Improvements to the dashboards and workflows could enhance patient self-management and clinician efficiency. CONCLUSION: Visual point-of-care dashboards can support caregivers, patients, and clinicians to coproduce rheumatology care. Findings demonstrate a need to spread and scale for broader benefit and impact.

Harnessing the Collective Expertise of Patients, Care Partners, Clinical Teams, and Researchers Through a Coproduction Learning Health System: A Case Study of the Dartmouth Health Promise Partnership.

The coproduction learning health system (CLHS) model extends the definition of a learning health system to explicitly bring together patients and care partners, health care teams, administrators, and scientists to share the work of optimizing health outcomes, improving care value, and generating new knowledge. The CLHS model highlights a partnership for coproduction that is supported by data that can be used to support individual patient care, quality improvement, and research. We provide a case study that describes the application of this model to transform care within an oncology program at an academic medical center.

Interpretations of integration in early accountable care organizations.

CONTEXT: It is widely hoped that accountable care organizations (ACOs) will improve health care quality and reduce costs by fostering integration among diverse provider groups. But how do implementers actually envision integration, and what will integration mean in terms of managing the many social identities that ACOs bring together? METHODS: Using the lens of the social identity approach, this qualitative study examined how four nascent ACOs engaged with the concept of integration. During multiday site visits, we conducted interviews (114 managers and physicians), observations, and document reviews. FINDINGS: In no case was the ACO interpreted as a new, overarching entity uniting disparate groups; rather, each site offered a unique interpretation that flowed from its existing strategies for social-identity management: An independent practice association preserved members' cherished value of autonomy by emphasizing coordination, not "integration"; a medical group promoted integration within its employed core, but not with affiliates; a hospital, engaging community physicians who mistrusted integrated systems, reimagined integration as an equal partnership; an integrated delivery system advanced its careful journey towards intergroup consensus by presenting the ACO as a cultural, not structural, change. CONCLUSIONS: The ACO appears to be a model flexible enough to work in synchrony with whatever social strategies are most context appropriate, with the potential to promote alignment and functional integration without demanding common identification with a superordinate group. "Soft integration" may be a promising alternative to the vertically integrated model that, though widely assumed to be ideal, has remained unattainable for most organizations.

Identifying and Predicting the Goals and Concerns Prioritised by Individuals with Inflammatory Bowel Disease.

BACKGROUND AND AIMS: In order to provide high-quality care, providers need to understand their patients' goals and concerns. This study aims to identify and predict the goals and concerns prioritised by patients with inflammatory bowel disease [IBD] in the outpatient setting. METHODS: Mixed-methods analysis was performed to identify the types, frequencies, and predictors of IBD patients' goals and concerns using 4873 surveys collected over 2016-2019 at 25 gastroenterology clinics across the USA participating in the Crohn's & Colitis Foundation's IBD Qorus Learning Health System. RESULTS: Patients with IBD most often prioritised goals and concerns related to symptoms/disease activity [50%] and clinical course/management [20%], whereas psychosocial/quality of life [12%] and medication [6%] concerns were less frequent. Females (odds ratio [OR] 22.1, 95% confidence interval [CI] 5.3-91.5) and patients in clinical remission [OR 2.2, 95% CI 1.2-4.1] were more likely to prioritise family planning. Patients >60 years old [OR 3.1, 95% CI 1.5-6.5] and patients with active disease [OR 3.2, 95% CI 1.4-7.6] were more often concerned about travelling. Smokers were more often concerned about nutrition [OR 4.2, 95% CI 1.9-9.2]. Surgery was more often a concern of patients with perianal Crohn's disease [OR 2.1, 95% CI 1.2-3.5], active disease [OR 1.9, 95% CI 1.1-3.4], and those with recent hospitalisations [OR 2.5, 95% CI 1.2-5.4]. CONCLUSIONS: IBD patients prioritised the remission of physical symptoms as treatment goals and they were less frequently concerned about medications and their side effects. Patients' demographics, IBD characteristics, and health care utilisation patterns can predict specific types of concerns/goals.

Eliciting patients' healthcare goals and concerns: Do questions influence responses?

There is increasing interest in asking patients questions before their visits to elicit goals and concerns, which is part of the move to support the concept of coproducing care. The phrasing and delivery of such questions differs across settings and is likely to influence responses. This report describes a study that (i) used a three-level model to categorize the goals and concerns elicited by two different pre-visit questions, and (ii) describes associations between responses elicited and the phrasing and delivery of the two questions. The questions were administered to patients with rheumatic disease, and patients with inflammatory bowel disease (IBD). Paper-based responses from 150 patients with rheumatic disease and 338 patients with IBD were analyzed (163 paper, 175 electronic). The goals and concerns elicited were primarily disease or symptom-specific. The specific goal and concern examples featured in one pre-visit question were more commonly reported in responses to that question, compared to the question without examples. Questions completed electronically before the visit were associated with longer responses than those completed on paper in the waiting room. In conclusion, how and when patients' goals and concerns are elicited appears to have an impact on responses and warrants further investigation.

Prioritizing Measures That Matter Within a Person-Centered Oncology Learning Health System.

BACKGROUND: Despite progress in developing learning health systems (LHS) and associated metrics of success, a gap remains in identifying measures to guide the implementation and assessment of the impact of an oncology LHS. Our aim was to identify a balanced set of measures to guide a person-centered oncology LHS. METHODS: A modified Delphi process and clinical value compass framework were used to prioritize measures for tracking LHS performance. A multidisciplinary group of 77 stakeholders, including people with cancer and family members, participated in 3 rounds of online voting followed by 50-minute discussions. Participants rated metrics on perceived importance to the LHS and discussed priorities. RESULTS: Voting was completed by 94% of participants and prioritized 22 measures within 8 domains. Patient and caregiver factors included clinical health (Eastern Cooperative Oncology Group Performance Status, survival by cancer type and stage), functional health and quality of life (Patient Reported Outcomes Measurement Information System [PROMIS] Global-10, Distress Thermometer, Modified Caregiver Strain Index), experience of care (advance care planning, collaboRATE, PROMIS Self-Efficacy Scale, access to care, experience of care, end-of-life quality measures), and cost and resource use (avoidance and delay in accessing care and medications, financial hardship, total cost of care). Contextual factors included team well-being (Well-being Index; voluntary staff turnover); learning culture (Improvement Readiness, compliance with Commission on Cancer quality of care measures); scholarly engagement and productivity (institutional commitment and support for research, academic productivity index); and diversity, equity, inclusion, and belonging (screening and follow-up for social determinants of health, inclusivity of staff and patients). CONCLUSIONS: The person-centered LHS value compass provides a balanced set of measures that oncology practices can use to monitor and evaluate improvement across multiple domains.

Patient-Reported Outcome Dashboards Within the Electronic Health Record to Support Shared Decision-making: Protocol for Co-design and Clinical Evaluation With Patients With Advanced Cancer and Chronic Kidney Disease.

BACKGROUND: Patient-reported outcomes-symptoms, treatment side effects, and health-related quality of life-are important to consider in chronic illness care. The increasing availability of health IT to collect patient-reported outcomes and integrate results within the electronic health record provides an unprecedented opportunity to support patients' symptom monitoring, shared decision-making, and effective use of the health care system. OBJECTIVE: The objectives of this study are to co-design a dashboard that displays patient-reported outcomes along with other clinical data (eg, laboratory tests, medications, and appointments) within an electronic health record and conduct a longitudinal demonstration trial to evaluate whether the dashboard is associated with improved shared decision-making and disease management outcomes. METHODS: Co-design teams comprising study investigators, patients with advanced cancer or chronic kidney disease, their care partners, and their clinicians will collaborate to develop the dashboard. Investigators will work with clinic staff to implement the co-designed dashboard for clinical testing during a demonstration trial. The primary outcome of the demonstration trial is whether the quality of shared decision-making increases from baseline to the 3-month follow-up. Secondary outcomes include longitudinal changes in satisfaction with care, self-efficacy in managing treatments and symptoms, health-related quality of life, and use of costly and potentially avoidable health care services. Implementation outcomes (ie, fidelity, appropriateness, acceptability, feasibility, reach, adoption, and sustainability) during the co-design process and demonstration trial will also be collected and summarized. RESULTS: The dashboard co-design process was completed in May 2020, and data collection for the demonstration trial is anticipated to be completed by the end of July 2022. The results will be disseminated in at least one manuscript per study objective. CONCLUSIONS: This protocol combines stakeholder engagement, health care coproduction frameworks, and health IT to develop a clinically feasible model of person-centered care delivery. The results will inform our current understanding of how best to integrate patient-reported outcome measures into clinical workflows to improve outcomes and reduce the burden of chronic disease on patients and health care systems. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/38461.

Design and methods for understanding the state of cystic fibrosis care amid the COVID-19 pandemic.

BACKGROUND: Novel therapies have dramatically changed cystic fibrosis (CF) and innovative care delivery systems are needed to meet future patient needs. Telehealth has been shown to be an efficient and desirable form of care delivery. The COVID-19 pandemic caused a rapid shift to telehealth, and this presented a unique opportunity to study facilitators, barriers, and satisfaction with this mode of care delivery. We aim to report survey methods, demographics and telehealth use among CF care programs, patients, and families during the pandemic. METHODS: CF programs completed two surveys between July 29 and September 18, 2020, and between April 19 and May 19, 2021. Patients and families completed a similar survey between August 31 and October 30, 2020. The surveys addressed topics assessing the pandemic's financial impact, telehealth modes and experiences, licensure and reimbursement issues, health screening, and remote monitoring. Quantitative data were analyzed with descriptive statistics and were compared to the CF Foundation Patient Registry. RESULTS: Most programs (278 at timepoint one and 274 at timepoint two) provided telehealth during the pandemic. The percent of visits containing either telephone or video components changed from 45% to 25% over the time periods. Additionally, 424 patients and families from various ages and backgrounds responded to the survey and 81% reported having a telehealth visit. CONCLUSIONS: The pandemic accelerated telehealth adoption and these datasets are a valuable source for exploring telehealth barriers and facilitators, the quality-of-care experience, financial and workforce implications, the impact on underrepresented populations, and implications for coverage and reimbursement.

Financial impacts of the COVID-19 pandemic on cystic fibrosis care: lessons for the future.

BACKGROUND: Chronic care delivery models faced unprecedented financial pressures, with a reduction of in-person visits and adoption of telehealth during the COVID-19 pandemic. We sought to understand the reported financial impact of pandemic-related changes to the cystic fibrosis (CF) care model. METHODS: The U.S. CF Foundation State of Care surveys fielded in Summer 2020 (SoC1) and Spring 2021 (SoC2) included questions for CF programs on the impact of pandemic-related restrictions on overall finances, staffing, licensure, and reimbursement of telehealth services. Descriptive analyses were conducted based on program type. RESULTS: Among the 286 respondents (128 pediatric, 118 adult, 40 affiliate), the majority (62%) reported a detrimental financial impact to their CF care program in SoC1, though fewer (42%) reported detrimental impacts in SoC2. The most common reported impacts in SoC1 were redeployment of clinical staff (68%), furloughs (52%), hiring freezes (51%), decreases in salaries (34%), or layoffs (10%). Reports of lower reimbursement for telehealth increased from 30% to 40% from SoC1 to SoC2. Projecting towards the future, only a minority (17%) of program directors in SoC2 felt that financial support would remain below pre-pandemic levels. CONCLUSIONS: The COVID-19 pandemic resulted in financial strain on the CF care model, including challenges with reimbursement for telehealth services and reductions in staffing due to institutional changes. Planning for the future of CF care model needs to address these short-term impacts, particularly to ensure a lack of interruption in high-quality multi-disciplinary care.

Evaluating barriers to and promoters of telehealth during the COVID-19 pandemic at U.S. cystic fibrosis programs.

BACKGROUND: Cystic fibrosis (CF) care programs in the United States rapidly adopted telehealth during the COVID-19 pandemic. Understanding factors that promote or impede telehealth will inform planning for future telehealth-enabled care models. METHODS: Adult, pediatric, and affiliate CF care programs in the United States (n = 287) were surveyed twice eight months apart in 2020-2021 about telehealth use. Programs were asked to describe barriers to and promoters of telehealth. RESULTS: Ninety-seven percent of programs provided telehealth services. In the first CF Care Program State of Care Survey (SoC1), programs estimated that 57% of patients exclusively received in-person care, 36% of patients received telehealth by phone/computer with video, and 8% of patients received telephone-only care. In the second CF Care Program State of Care Survey (SoC2), programs estimated that 80% of visits were in-person and 15% were via audio and video telehealth. Pediatric programs (21%) were less likely than adult (37%) or affiliate (41%) programs to recommend telehealth (p = 0.007). All programs ranked lack of internet access as the highest barrier to patient engagement with telehealth. Promoters of telehealth were increased accessibility and avoidance of infection transmission. Top ranked changes to improve telehealth were expanded provision of remote monitoring devices and technology access. Similar proportions of program types anticipated institutional telehealth expansion. CONCLUSION: During the COVID-19 pandemic, CF programs in the United States identified factors to improve future care delivery via telehealth. Targeting specific barriers and promoters will improve the use and quality of telehealth throughout the care center network.

Barriers and facilitators to implementing telehealth services during the COVID-19 pandemic: A qualitative analysis of interviews with cystic fibrosis care team members.

BACKGROUND: The COVID-19 pandemic forced cystic fibrosis (CF) care programs to rapidly shift from in-person care delivery to telehealth. Our objective was to provide a qualitative exploration of facilitators and barriers to: 1) implementing high-quality telehealth and 2) navigating reimbursement for telehealth services. METHODS: We used data from the 2020 State of Care CF Program Survey (n=286 U.S. care programs) administered in August-September to identify two cohorts of programs, with variation in telehealth quality (n=12 programs) and reimbursement (n=8 programs). We conducted focus groups and semi-structured interviews with CF program directors and coordinators in December 2020, approximately 9 months from onset of the pandemic. We used the Consolidated Framework for Implementation Research to identify facilitators and barriers of implementation, and inductive thematic analysis to identify facilitators and barriers of reimbursement. RESULTS: Factors differentiating programs with greater and lower perceived telehealth quality included telehealth characteristics (perceived advantage over in-person care, cost, platform quality); external influences (needs and resources of those served by the CF program), characteristics of the CF program (compatibility with workflows, relative priority, available resources); characteristics of team members (individual stage of change), and processes for implementation (engaging patients and teams). Reimbursement barriers included documentation to optimize billing; reimbursement of multi-disciplinary team members, remote monitoring, and telephone-only telehealth; and lower volume of patients. CONCLUSIONS: A number of factors are associated with successful implementation and reimbursement of telehealth. Future efforts should provide guidance and incentives that support telehealth delivery and infrastructure, share best practices across CF programs, and remove barriers.

Telehealth use in cystic fibrosis during COVID-19: Association with race, ethnicity, and socioeconomic factors.

BACKGROUND: Due to the COVID-19 pandemic, there was an uptake of telehealth in cystic fibrosis care. Previous studies show disparities in telehealth use based on socioeconomic status (SES). We aimed to: (1) understand telehealth use and perceptions and (2) identify the facilitators and barriers to telehealth use among people with CF and their families (PwCF) from diverse racial/ethnic and socioeconomic backgrounds. METHODS: We conducted an analysis of the 2020 Cystic Fibrosis State of Care surveys completed by PwCF (PFSoC), CF Care Programs (SoC1) and the CF Foundation Patient Registry (CFFPR). RESULTS: A total of 424 PwCF and 286 programs responded to the PFSoC and SoC1. Among PwCF, 90% self-identified as White, 6% as Hispanic/Latino, and 2% as Black. Racial/ethnic minorities were less likely to have had a telehealth visit (p=.015). This difference was pronounced among the Hispanic/Latino population (p<.01). Telehealth use did not differ by health insurance and was similarly offered independent of financial status. Compared to PwCF who denied financial constraints, those who reported financial difficulties found telehealth more difficult to use (p=.018) and were less likely to think that their concerns (p=.010) or issues that mattered most to them (p=.020) were addressed during telehealth. Programs perceived lack of technology, language barriers, and home conditions as barriers to telehealth in vulnerable populations. CONCLUSION: PFSoC and SoC1 identified differences in telehealth use and care perceptions by ethnicity, race, and socioeconomic characteristics. Further studies are needed to understand how telehealth can change access to CF care in diverse subpopulations.

Remote monitoring in telehealth care delivery across the U.S. cystic fibrosis care network.

BACKGROUND: Cystic fibrosis (CF) programs and people with CF (PwCF) employed various monitoring methods for virtual care during the COVID-19 pandemic. This paper characterizes experiences with remote monitoring across the U.S. CF community. METHODS: The CF Foundation (CFF) sponsored distribution of home spirometers (April 2020 to May 2021), surveys to PwCF and CF programs (July to September 2020), and a second program survey (April to May 2021). We used mixed methods to explore access, use, and perspectives regarding the use of remote monitoring in future care. RESULTS: By October 2020, 13,345 spirometers had been distributed, and 19,271 spirometers by May 2021. Programs (n=286) estimated proportions of PwCF with home devices increased over seven months: spirometers (30% to 70%), scales (50% to 70%), oximeters (5% to 10%) with higher estimates in adult programs for spirometers and oximeters. PwCF (n=378) had access to scales (89%), followed by oximeters (48%) and spirometers (47%), often using scales and oximeters weekly, and spirometers monthly. Over both surveys, some programs had no method to collect respiratory specimens for cultures associated with telehealth visits (47%, n=132; 41%, n=118). Most programs (81%) had a process for phlebotomy associated with a telehealth visit, primarily through off-site labs. Both PwCF and programs felt future care should advance remote monitoring and recommended improvements for access, training, and data collection systems. CONCLUSIONS: PwCF and programs experienced unprecedented access to remote monitoring and raised its importance for future care. Improvements to current systems may leverage these shared experiences to augment future care models.

A pilot evaluation of the In SHAPE individualized health promotion intervention for adults with mental illness.

This pilot study examined whether participation in the individualized, community-integrated In SHAPE health promotion program would result in improved physical activity and dietary behaviors, health indicators, and psychological functioning or symptoms in 76 adults with schizophrenia, bipolar disorder, major depression, or other mental disorders. Over a 9-month period, participation was associated with increased exercise, vigorous activity, and leisurely walking (P < .01), and a trend toward improved readiness to reduce caloric intake (P = .053). Participants demonstrated a reduction in waist circumference (P < .05), but no change in BMI. Satisfaction with fitness (P < .001) and mental health functioning (P < .05) improved, and severity of negative symptoms decreased (P < .01). This study demonstrated the feasibility and potential effectiveness of the In SHAPE program, which consisted of exercise and dietary modification. Based on these promising results, randomized controlled trials of the In SHAPE program are necessary to establish its effectiveness compared with usual care and alternative approaches to enhancing fitness.

Formative evaluation of a dashboard to support coproduction of healthcare services in cystic fibrosis.

BACKGROUND: Healthcare coproduction engages patients and clinicians to design and execute services, yet little is known about tools that facilitate coproduction. Our objective was to understand uptake, experiences, benefits, and limitations of a dashboard to support patient-clinician partnerships within the cystic fibrosis (CF) community. METHODS: People living with CF (PwCF) and clinicians co-designed a dashboard that displayed patient-reported and clinical data. Eight CF programmes, including 21 clinicians, and 131 PwCF participated in a pilot study of the dashboard. We conducted descriptive statistics and thematic analyses of surveys (82 PwCF; 21 clinicians); semi-structured interviews (13 PwCF; 8 care teams); and passively-collected usage data. RESULTS: Two-thirds of the 82 PwCF used the dashboard during a visit, and 59% used it outside a visit. Among 48 PwCF using the dashboard outside the clinic, 92% viewed their health information and 46% documented concerns or requests. Most of the 21 clinicians used the dashboard to support visit planning (76%); fewer used it during a visit (48%). The dashboard supported discussions of what matters most (69% PwCF; 68% clinicians). Several themes emerged: access to patient outcomes data allows users to learn more deeply; participation in pre-visit planning matters; coproduction is made possible by inviting new ways to partner; and lack of integration with existing information technology (IT) systems is limiting. CONCLUSIONS: A dashboard was feasible to implement and use. Future iterations should provide patients access to their data, be simple to use, and integrate with IT systems in use by clinicians and PwCF.