Defining self-monitoring in postpandemic maternity care: Perspectives from women, partners, healthcare professionals, and policymakers.

Introduction: We aimed to explore the conceptualization and perception of self-monitoring amongst women, partners, healthcare professionals (HCPs), and policymakers, with particular interest in those living with social/medical complexity.

Material And Methods: Across the United Kingdom, 96 semi-structured in-depth qualitative interviews were conducted with 40 women, 15 partners, 21 HCPs, and 20 policymakers to discuss their lived experience of utilizing, delivering, or developing policy for self-monitoring during the COVID-19 pandemic. A thematic framework analysis was undertaken to develop themes, considered by participant type, ethnicity, geographical region, personal experience of self-monitoring, and social complexity, and a content analysis was used to explore how self-monitoring was conceptualized.

Feasibility and Usability of a Web-Based Peer Support Network for Care Partners of People With Serious Illness (ConnectShareCare): Observational Study.

Background: While it can be rewarding to provide care for a person with serious illness, care partners are often unprepared to manage and cope with the physical and emotional stresses that arise with disease progression and bereavement.

Objective: We aimed to evaluate membership enrollment, engagement, and experiences within a web-based peer support network for active and bereaved care partners of people with serious illness.

Methods: We conducted a formative evaluation of the ConnectShareCare peer-to-peer web-based support network, which targeted care partners of people with serious illness residing in the northeastern United States.

Physical well-being and burden of care in adults on modulator therapy: A mixed methods study of patient-reported experiences from the Well-ME survey.

Background: Despite widespread availability of modulator therapies and improved lung function in many people with cystic fibrosis (CF), physical symptoms may remain burdensome for some people with CF (PwCF). This study identifies the impact of ivacaftor (IVA) and elexacaftor/tezacaftor/ivacaftor (ETI) on self-reported physical well-being and burden of care among adults with CF.

Methods: We conducted a secondary analysis of data from the Well-ME Survey.

An electronic pre-visit agenda-setting questionnaire in ambulatory palliative care is feasible and acceptable to patients, care partners, and clinicians: A mixed methods evaluation.

Background: To provide patient-centered healthcare for people with serious illness, healthcare teams must elicit needs, goals, preferences, and values from patients and care partners.

Aim: Describe feasibility and acceptability of an electronic pre-visit agenda-setting questionnaire for patients and care partners to identify these topics before ambulatory palliative care visits.

Design: Concurrent mixed-methods formative evaluation of questionnaire feasibility and acceptability.

Impact of CFTR modulator therapy on basic life needs and financial concerns in people with cystic fibrosis: Data from the Well-ME survey.

Background: CFTR modulator (CFTR-M) therapy has led to improved clinical outcomes amongst people with cystic fibrosis (PwCF) eligible for these therapies. However, there is limited data on their impact on the basic life needs and financial concerns of PwCF.

Methods: We used data from the Wellness in the Modulator Era (Well-ME) survey, which includes data from 900 PwCF both taking and not taking CFTR-M.

Healthcare providers' experiences of maternity care service delivery during the COVID-19 pandemic in the United Kingdom: a follow-up systematic review and qualitative evidence synthesis.

Problem And Background: During the COVID-19 pandemic, there was substantial reconfiguration of maternity care services, affecting both users and healthcare providers (HCPs), in the United Kingdom (UK) and globally.

Aim: To further our understanding of the impact of maternity service reconfigurations in the UK, from the perspective of maternity HCPs.

Methods: Scopus, MEDLINE, EMBASE, CINAHL, PsycINFO and the Cochrane COVID Study Register were searched for relevant studies reporting qualitative data from the UK, published in English between 01 June 2021 and 30 September 2023.

Agenda-setting in the clinical encounter: A systematic review protocol.

Introduction: Agenda-setting is a collaborative communication strategy used by a clinician before or at the start of a clinical encounter to work together with the patient to "elicit, propose, and organize" topics to be discussed during the encounter. While clinical visit agenda-setting has been acknowledged as an important element of patient-centered communication, the effectiveness of agenda-setting interventions in improving healthcare outcomes is unclear. To our knowledge, no systematic review has examined clinical visit agenda-setting interventions.

Post-Pandemic Maternity Care Planning for Vaccination: A Qualitative Study of the Experiences of Women, Partners, Health Care Professionals, and Policy Makers in the United Kingdom.

Maternal vaccination during pregnancy, in general and against COVID-19 infection, offers protection to both mother and baby, but uptake remains suboptimal. This study aimed to explore the perceptions regarding COVID-19 vaccination in pregnancy, particularly for marginalised populations and those living with social or medical complexity. A total of 96 semi-structured in-depth interviews were conducted with 40 women, 15 partners, 21 HCPs, and 20 policy makers, across all four nations of the United Kingdom (UK), discussing their lived experience of utilising, delivering, or developing policy for COVID-19 vaccination in pregnancy during the pandemic.

Shared decision-making and disease management in advanced cancer and chronic kidney disease using patient-reported outcome dashboards.

Objectives: To assess the use of a co-designed patient-reported outcome (PRO) clinical dashboard and estimate its impact on shared decision-making (SDM) and symptomatology in adults with advanced cancer or chronic kidney disease (CKD).

Materials And Methods: We developed a clinical PRO dashboard within the Northwestern Medicine Patient-Reported Outcomes system, enhanced through co-design involving 20 diverse constituents. Using a single-group, pretest-posttest design, we evaluated the dashboard's use among patients with advanced cancer or CKD between June 2020 and January 2022.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.