Representativeness of Patients With Lung Cancer in an Integrated Health Care Delivery System.

INTRODUCTION: Observational research is important for understanding the real-world benefits of advancements in lung cancer care. Integrated health care systems, such as Kaiser Permanente Northern California, have extensive electronic health records suitable for such research, but the generalizability of their populations is often questioned. METHODS: Leveraging data from the California Cancer Registry, the authors compared distributions of demographic and clinical characteristics, in addition to neighborhood and environmental conditions, between patients diagnosed with lung cancer from 2015 through 2019 at Kaiser Permanente Northern California, National Cancer Institute-designated cancer centers (NCICCs), and all other non-NCICC hospitals within the same catchment area. RESULTS: Of 20,178 included patients, 30% were from Kaiser Permanente Northern California, 8% from NCICCs, and 62% from other non-NCICC hospitals. Compared to NCICC patients, Kaiser Permanente Northern California patients were more similar to other non-NCICC patients on most characteristics. Compared to other non-NCICC patients, Kaiser Permanente Northern California patients were slightly older, more likely to be female, and less likely to be Hispanic or Asian/Pacific Islander and to reside in lower socioeconomic status (SES) neighborhoods. In contrast, NCICC patients were younger, less likely to be female or from non-Asian/Pacific Islander minoritized racial groups, and more likely to present with early-stage disease and adenocarcinoma and to reside in neighborhoods with higher SES and lower air pollution than Kaiser Permanente Northern California or other non-NCICC patients. DISCUSSION: Patients from Kaiser Permanente Northern California, compared to NCICCs, are more broadly representative of the underlying patient population with lung cancer. CONCLUSION: Research using electronic health record data from integrated health care systems can contribute generalizable real-world evidence to benchmark and improve lung cancer care.

Is the Norwegian stepped care model for allocation of patients with mental health problems working as intended? A cross-sectional study.

OBJECTIVE: Stepped care models are frameworks for mental health care systems in several countries. According to Norwegian guidelines, individuals with mental health problems of mild severity should be treated in community mental health services, moderate severity in specialist mental health services, while complex/severe problems are often a shared responsibility. This study investigated whether patients are allocated as intended. METHODS: In a cross-sectional study, 4061 outpatients recruited from community- and specialist mental health services reported demographic variables, symptoms of anxiety/depression, functional impairment, health status, and sick leave status. The community sample consisted of two subsamples: mild/moderate problems and complex problems. RESULTS: There was substantial overlap (80%-99%) of symptoms, impairment, and health between community- and specialist mental health services. More impairment, worse health, lower age, and being male were associated with treatment at specialist level compared to community mild/moderate. Better health, being in a relationship, and lower age were associated with specialized treatment compared to community complex group. CONCLUSION: The limited association between treatment level and symptoms and functional impairment reveals inconsistencies between treatment guidelines and clinical practice. How the existing organization affects patient outcomes and satisfaction should be investigated further.

Mental health clinical pathways for children and young people with long-term health conditions: A systematic review.

RATIONALE: Clinical pathways (CPWs) are structured care plans that set out essential steps in the care of patients with a specific clinical problem. Amidst calls for the prioritisation of integrated mental and physical health care for young people, multidisciplinary CPWs have been proposed as a step towards closer integration. There is very limited evidence around CPWs for young people with mental and physical health needs, necessitating a review of the literature. AIMS AND OBJECTIVES: The aim of this review is to understand how clinical pathways have been used to deliver mental health support to children and young people with long-term physical health conditions and their effectiveness across a range of outcomes. METHODS: The databases MEDLINE, CENTRAL, PsycINFO and CINAHL were searched from inception to 6 September 2023. Keywords linked to children and young people, mental health, long-term physical health conditions and CPWs were used. Studies using either quantitative or qualitative research designs were included. All studies must have evaluated a CPW to provide mental health support to children and young people (up to 25 years old) with long-term health physical conditions. Both mental and physical health outcomes were considered. Pathways were grouped by integration 'model' as described in the wider literature. RESULTS: The initial search returned 4082 studies after deduplication. A total of eight studies detailing six distinct care pathways (232 participants [170 children and young people; 50 caregivers; 12 healthcare professionals]) met eligibility criteria and were included in the analysis. Four pathways were conducted within an 'integrated model'; two were a combination of 'integrated' and 'colocated'; and none within a 'co-ordinated model'. Only pathways within an integrated model reported quantitative health outcomes, with improvements across a range of mental health measures. One negative physical health outcome was reported from an integrated diabetes pathway, but this should be interpreted with caution. CONCLUSION: This review identified a range of CPW designs but most fell under an integrated model. The results suggest that calls for integrated mental health pathways in this population may be appropriate; however, conclusions are limited by a paucity of evidence.

Lay advisor interventions for hypertension outcomes: A Systematic Review, Meta-analysis and a RE-AIM evaluation.

Introduction: Lay advisor interventions improve hypertension outcomes; however, the added benefits and relevant factors for their widespread implementation into health systems are unknown. We performed a systematic review to: (1) summarize the benefits of adding lay advisors to interventions on hypertension outcomes, and (2) summarize factors associated with successful implementation in health systems using the Reach, Effectiveness, Adoption, Implementation, Maintenance (RE-AIM) framework. Methods: We systematically searched several databases, including Ovid MEDLINE, CINAHL, PsycINFO from January 1981 to May 2023. All study designs of interventions delivered solely by lay advisors for adults with hypertension were eligible. If both arms received the lay advisor intervention, the study arm with lower intensity was assigned as the low-intensity intervention. Results: We included 41 articles, of which 22 were RCTs, from 7,267 screened citations. Studies predominantly included socially disadvantaged populations. Meta-analysis (9 RCTs; n = 4,220) of eligible lay advisor interventions reporting outcomes showed improved systolic blood pressure (BP) [-3.72 mm Hg (CI -6.1 to -1.3; I2 88%)], and diastolic BP [-1.7 mm Hg (CI -1 to -0.9; I2 7%)] compared to control group. Pooled effect from six RCTs (n = 3,277) comparing high-intensity with low-intensity lay advisor interventions showed improved systolic BP of -3.6 mm Hg (CI -6.7 to -0.5; I2 82.7%) and improved diastolic BP of -2.1 mm Hg (CI -3.7 to -0.4; I2 70.9%) with high-intensity interventions. No significant difference in pooled odds of hypertension control was noted between lay advisor intervention and control groups, or between high-intensity and low-intensity intervention groups. Most studies used multicomponent interventions with no stepped care elements or reporting of efficacious components. Indicators of external validity (adoption, implementation, maintenance) were infrequently reported. Discussion: Lay advisor interventions improve hypertension outcomes, with high intensity interventions having a greater impact. Further studies need to identify successful intervention and implementation factors of multicomponent interventions for stepped upscaling within healthcare system settings as well as factors used to help sustain interventions.

Lost in the System: Responsibilisation and Burden for Women With Multiple Long-Term Health Conditions During Pregnancy.

INTRODUCTION: Over a fifth of pregnant women are living with multiple long-term health conditions, which is associated with increased risks of adverse outcomes for mothers and infants. While there are many examples of research exploring individuals' experiences and care pathways for pregnancy with a single health condition, evidence relating to multiple health conditions is limited. This study aimed to explore experiences and care of women with multiple long-term health conditions around the time of pregnancy. METHODS: Semistructured interviews were conducted between March 2022 and May 2023 with women with multiple long-term health conditions who were at least 28 weeks pregnant or had had a baby in the last 2 years, and healthcare professionals with experience of caring for these women. Participants were recruited from across the United Kingdom. Data were analysed using thematic analysis. RESULTS: Fifty-seven women and 51 healthcare professionals participated. Five themes were identified. Women with long-term health conditions and professionals recognised that it takes a team to avoid inconsistent care and communication, for example, medication management. Often, women were required to take a care navigation role to link up their healthcare providers. Women described mixed experiences regarding care for their multiple identities and the whole person. Postnatally, women and professionals recognised a downgrade in care, particularly for women's long-term health conditions. Some professionals detailed the importance of engaging with women's knowledge, and recognising their own professional boundaries of expertise. Many participants described difficulties in providing informational continuity and subsequent impacts on care. Specifically, the setup of care systems made it difficult for everyone to access necessary information, especially when care involved multiple sites. CONCLUSION: Pregnant women with long-term health conditions can experience a substantial burden of responsibility to maintain communication with their care team, often feeling vulnerable, patronised, and let down by a lack of acknowledgement of their expertise. These results will be used to inform the content of coproduction workshops aimed at developing a list of care recommendations for affected women. It will also inform future interventional studies aimed at improving outcomes for these women and their babies. PATIENT OR PUBLIC CONTRIBUTION: Our Patient and Public Involvement group were involved in the design of the study and the analysis and interpretation of the data, and a public study investigator was part of the author group.

General practitioners in front of COVID-19: Italy in European comparative perspective.

COVID-19 has highlighted strengths and weaknesses in healthcare systems all over the word. Despite the differences in primary care models in Europe, this study investigates the state-of-the-art of general practitioners (GPs) before the COVID-19 pandemic spread as a result of the reform process of the previous two decades. The GPs numbers over 100,000 inhabitants has been considered as a proxy of public health investment in GPs. Is the number of GPs increased or decreased in the last 20 years of reform processes in European countries? The main hypothesis is that European healthcare systems would have increased the number of GPs coherently with WHO recommendations. Comparative data on the number of GPs per 100,000 inhabitants in 21 European countries are investigated between 1995 and 2014 (the last available data). Data show that the number of family doctors over 100,000 inhabitants in European countries has increased over the last 20 years, except for Italy, where it has strongly reduced. Primary care has had a crucial role in managing the pandemic. Results of this study suggest that a country such as Italy, which has not invested in family doctors in the last two decades, would have been less equipped to manage the COVID-19 pandemic.

Interprofessional Educational Needs for Shared Governance of Integrated Care.

Introduction: This study investigated the educational needs of integrated care among professionals in the public sector of healthcare and social care services in South Korea. Methods: A cross-sectional secondary data analysis was performed. Original data were obtained from 10 metropolitan communities with a convenience sample of 210 integrated care professionals. The Borich Needs Assessment Model and the Locus for Focus Model were used to examine the priority educational needs of each integrated care professional. Results: This study analyzed the key details of educational needs in integrated care by focusing on the competencies of integrated care approaches for person-centered care, interprofessional collaboration, and community involvement. The core educational needs of community care administrators, care coordinators, healthcare and social care providers, and community health champions, which are common to all professionals, and the specific educational needs for each type of professional were demonstrated, which contained specific content to implement integrated care. Conclusion: This study provides an opportunity to comprehensively understand the educational needs of integrated care professionals based on their competencies. They want better interprofessional cooperation through networking and collaborative strategies. The results of this study may be utilized as fundamental data by future instructors to provide evidence-based education programs.

Variable Impact of Medical Scribes on Physician Electronic Health Record Documentation Practices: A Quantitative Analysis Across a Large, Integrated Health-System.

BACKGROUND: Medical scribes have been utilized to reduce electronic health record (EHR) associated documentation burden. Although evidence suggests benefits to scribes, no large-scale studies have quantitatively evaluated scribe impact on physician documentation across clinical settings. This study aimed to evaluate the effect of scribes on physician EHR documentation behaviors and performance. METHODS: This retrospective cohort study used EHR audit log data from a large academic health system to evaluate clinical documentation for all ambulatory encounters between January 2014 and December 2019 to evaluate the effect of scribes on physician documentation behaviors. Scribe services were provided on a first-come, first-served basis on physician request. Based on a physician's scribe use, encounters were grouped into 3 categories: never using a scribe, prescribe (before scribe use), or using a scribe. Outcomes included chart closure time, the proportion of delinquent charts, and charts closed after-hours. RESULTS: Three hundred ninety-five physicians (23% scribe users) across 29 medical subspecialties, encompassing 1,132,487 encounters, were included in the analysis. At baseline, scribe users had higher chart closure time, delinquent charts, and after-hours documentation than physicians who never used scribes. Among scribe users, the difference in outcome measures postscribe compared with baseline varied, and using a scribe rarely resulted in outcome measures approaching a range similar to the performance levels of nonusing physicians. In addition, there was variability in outcome measures across medical specialties and within similar subspecialties. CONCLUSION: Although scribes may improve documentation efficiency among some physicians, not all will improve EHR-related documentation practices. Different strategies may help to optimize documentation behaviors of physician-scribe dyads and maximize outcomes of scribe implementation.

Primary Care Practice Characteristics Associated With Medical Assistant Staffing Ratios.

This study characterized adult primary care medical assistant (MA) staffing. National Survey of Healthcare Organizations and Systems (n = 1,252) data were analyzed to examine primary care practice characteristics associated with MA per primary care clinician (PCC) staffing ratios. In 2021, few practices (11.4%) had ratios of 2 or more MAs per PCCs. Compared with system-owned practices, independent (odds ratio [OR] = 1.76, P <0.05) and medical group-owned (OR = 2.09, P <0.05) practices were more likely to have ratios of 2 or more MAs per PCCs, as were practices with organizational cultures oriented to innovation (P <0.05). Most primary care practices do not have adequate MA staffing.

Results of the study of the attitude of women of reproductive age to the integrated gynecological care provision by family physicians.

OBJECTIVE: Aim: To study and analyze the attitude of women of reproductive age to the integrated gynecological care provision by family physicians, their readiness to receive some gynecological services from family physicians, as well as to analyze the level of women's support and readiness for the integrated provision of gynecological care depending on age and level of education. PATIENTS AND METHODS: Materials and Methods: For the survey, anonymous questionnaires containing questions on the attitude of women of reproductive age to the integrated provision of certain types of gynecological care by family physicians were developed. 181 women from the Kyiv region took part in the survey. RESULTS: Results: Support of more than 80% of respondents regarding the integrated gynecological care provision by family physicians received the following questions: counseling on the prevention of sexually transmitted infections and human immunodeficiency virus/acquired immunodeficiency syndrome (HIV/AIDS) (92,3%); counseling on family planning and prevention of unwanted pregnancy (83,4%); counseling on the use of various methods of contraception (82,3%); examination and palpation of mammary glands (80,1%); referral of women to a higher level of obstetric and gynecological care (if necessary (86,2%). CONCLUSION: Conclusions: The majority of respondents (67,4%) are ready or better ready than not ready to receive certain types of gynecological care services from family physicians. Almost the same percentage ratio (more than 60%) of women of each age group and all levels of education are ready or better ready than not ready to receive gynecological care services, which they supported, from family physicians.

Vulnerability to Cyberattacks and Sociotechnical Solutions for Health Care Systems: Systematic Review.

BACKGROUND: Health care organizations worldwide are faced with an increasing number of cyberattacks and threats to their critical infrastructure. These cyberattacks cause significant data breaches in digital health information systems, which threaten patient safety and privacy. OBJECTIVE: From a sociotechnical perspective, this paper explores why digital health care systems are vulnerable to cyberattacks and provides sociotechnical solutions through a systematic literature review (SLR). METHODS: An SLR using the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) was conducted by searching 6 databases (PubMed, Web of Science, ScienceDirect, Scopus, Institute of Electrical and Electronics Engineers, and Springer) and a journal (Management Information Systems Quarterly) for articles published between 2012 and 2022 and indexed using the following keywords: "(cybersecurity OR cybercrime OR ransomware) AND (healthcare) OR (cybersecurity in healthcare)." Reports, review articles, and industry white papers that focused on cybersecurity and health care challenges and solutions were included. Only articles published in English were selected for the review. RESULTS: In total, 5 themes were identified: human error, lack of investment, complex network-connected end-point devices, old legacy systems, and technology advancement (digitalization). We also found that knowledge applications for solving vulnerabilities in health care systems between 2012 to 2022 were inconsistent. CONCLUSIONS: This SLR provides a clear understanding of why health care systems are vulnerable to cyberattacks and proposes interventions from a new sociotechnical perspective. These solutions can serve as a guide for health care organizations in their efforts to prevent breaches and address vulnerabilities. To bridge the gap, we recommend that health care organizations, in partnership with educational institutions, develop and implement a cybersecurity curriculum for health care and intelligence information sharing through collaborations; training; awareness campaigns; and knowledge application areas such as secure design processes, phase-out of legacy systems, and improved investment. Additional studies are needed to create a sociotechnical framework that will support cybersecurity in health care systems and connect technology, people, and processes in an integrated manner.

Pattern of Virtual Consultations in the Kingdom of Saudi Arabia: An Epidemiological Nationwide Study.

BACKGROUND: In the Kingdom of Saudi Arabia (KSA), little is known about the adoption of virtual consultations (VCs), with most studies being survey-based leading to varying results. This study aims to utilise secondary collected data on the use of both kinds of VCs currently available, and to epidemiologically describe the adoption of these consultations. METHODS: This retrospective study analysed data provided by the Ministry of Health between January 1st 2021 and June 30th 2022. For both the home-based and the hospital-based consultations, variables included the age and sex of patients, date of consultation, duration in minutes, closure status for the appointment and the governorate in which the patient is residing. A heat map was drawn to present patterns of utilisation across the country. RESULTS: The total number of VCs for both types were 1,008,228. For both types, females were higher adopters (54.73%). Of the total number of consultations, 751,156 were hospital-based. Of these consultations, family medicine consultations were the most common (20.42%), followed by internal medicine. Maternity follow-up clinics were higher in home-based clinics. The proportion of patient no-shows was high overall (48.30%). Utilisation was high in urban governorates, and low in rural ones. CONCLUSION: Findings have several implications on health policy. It provides further evidence of the importance of family medicine, where it was the most common speciality even in hospital-based settings. The high variability in the adoption of consultations across rural and urban areas as well as the extremely high number of patient-no-shows warrants further investigation.

Should an emergency physician be a "surgeon" in a rural area? A case of blunt cardiac rupture successfully treated by an emergency physician.

Objective: Blunt cardiac rupture is a life-threatening injury that requires surgical repair by cardiovascular or trauma surgeons. We report a case of blunt cardiac rupture in a rural area in which emergency physicians performed emergency department thoracotomy and surgical repair to save the patient's life. Patient and Methods: This case involved an 18-year-old female who was injured in a traffic accident and underwent emergency thoracotomy and surgical repair. Results: The patient's left thorax was deformed, and sonographic assessment revealed pericardial effusion. She experienced cardiopulmonary arrest 13 min after hospital arrival. An emergency physician performed an emergency department thoracotomy. The clots were removed from the surface of the left ventricle, followed by wound compression to control bleeding from the ruptured left ventricular wall. After the recovery of spontaneous circulation, the emergency physician sutured the ruptured heart. The patient survived with good neurological function. Conclusion: In rural areas, blunt cardiac rupture may require emergency department thoracotomy and cardiac repair by emergency physicians. The establishment of educational systems that include continuous education on trauma surgical procedures and consensus guidelines is needed to assist rural emergency physicians in performing surgical procedures.

Building a Sustainable Learning Health Care System for Pregnant and Lactating People: Interview Study Among Data Access Providers.

BACKGROUND: In many areas of health care, learning health care systems (LHSs) are seen as promising ways to accelerate research and outcomes for patients by reusing health and research data. For example, considering pregnant and lactating people, for whom there is still a poor evidence base for medication safety and efficacy, an LHS presents an interesting way forward. Combining unique data sources across Europe in an LHS could help clarify how medications affect pregnancy outcomes and lactation exposures. In general, a remaining challenge of data-intensive health research, which is at the core of an LHS, has been obtaining meaningful access to data. These unique data sources, also called data access providers (DAPs), are both public and private organizations and are important stakeholders in the development of a sustainable and ethically responsible LHS. Sustainability is often discussed as a challenge in LHS development. Moreover, DAPs are increasingly expected to move beyond regulatory compliance and are seen as moral agents tasked with upholding ethical principles, such as transparency, trustworthiness, responsibility, and community engagement. OBJECTIVE: This study aims to explore the views of people working for DAPs who participate in a public-private partnership to build a sustainable and ethically responsible LHS. METHODS: Using a qualitative interview design, we interviewed 14 people involved in the Innovative Medicines Initiative (IMI) ConcePTION (Continuum of Evidence from Pregnancy Exposures, Reproductive Toxicology and Breastfeeding to Improve Outcomes Now) project, a public-private collaboration with the goal of building an LHS for pregnant and lactating people. The pseudonymized transcripts were analyzed thematically. RESULTS: A total of 3 themes were identified: opportunities and responsibilities, conditions for participation and commitment, and challenges for a knowledge-generating ecosystem. The respondents generally regarded the collaboration as an opportunity for various reasons beyond the primary goal of generating knowledge about medication safety during pregnancy and lactation. Respondents had different interpretations of responsibility in the context of data-intensive research in a public-private network. Respondents explained that resources (financial and other), scientific output, motivation, agreements collaboration with the pharmaceutical industry, trust, and transparency are important conditions for participating in and committing to the ConcePTION LHS. Respondents also discussed the challenges of an LHS, including the limitations to (real-world) data analyses and governance procedures. CONCLUSIONS: Our respondents were motivated by diverse opportunities to contribute to an LHS for pregnant and lactating people, primarily centered on advancing knowledge on medication safety. Although a shared responsibility for enabling real-world data analyses is acknowledged, their focus remains on their work and contribution to the project rather than on safeguarding ethical data handling. The results of our interviews underline the importance of a transparent governance structure, emphasizing the trust between DAPs and the public for the success and sustainability of an LHS.

Health system utilization and perceived quality among adults in Lao PDR: evidence from a nationally representative phone survey.

BACKGROUND: The World Health Organization (WHO) defines quality health services as being effective, safe, people-centered, timely, equitable, integrated and efficient. It is critical to understand people's perspectives and care experiences to measure progress against these goals. However, many low- and middle-income governments do not routinely collect such information. In this study, we aim to measure health systems performance from the perspective of the adult population of users and non-users in Lao PDR. METHODS: Using the People's Voice Survey (PVS), a novel phone-based survey designed to integrate people's voices into primary care performance measurement, we conducted a cross-sectional survey of the general adult (18+) population in Lao PDR in 2022. We analyzed health care utilization patterns, user-reported quality of care, and coverage of key preventive health services. Data from the most recent MICS survey was used to create sampling weights generating nationally representative estimates. RESULTS: A total of 2007 adults completed interviews in approximately 3.5 months. About two thirds (65%) of respondents reported visiting a health facility in the past year and, of these, the majority (61%) visited a hospital as opposed to a health center or clinic. Among those that recently visited health facilities, 28% rated their experience as "poor" or "fair". 16% had unmet need for care and 12% reported discrimination during treatment in the past year. 12% of women over 50 years old reported receiving a mammogram and 59% of adults reported receiving blood pressure screening in the previous year. CONCLUSIONS: The study presents data from the first nationally representative survey in Lao PDR to measure health system performance. The results indicate that, despite progress towards universal coverage of health insurance in Lao PDR, significant gaps remain, particularly with respect to bypassing of primary care facilities, significant unmet need for care, experiences of discrimination, and overall low perceptions of quality of care.

We need a radical change to take place now´-The potential of integrated healthcare for rural long-term care facilities.

OBJECTIVES: This study explores healthcare professionals' perceptions in rural German long-term care facilities, focusing on integrated health systems. The aim is to understand experiences, challenges, and preferences. METHODS: Twenty nurses and paramedics participated in in-depth interviews. Thematic analysis was applied to transcripts, revealing key themes: acute healthcare provision, interdisciplinary collaboration, telemedicine use, and preferences for the future healthcare landscape. RESULTS: Themes highlighted factors influencing acute care situations and the crucial role of interdisciplinary collaboration. Integrated care was infrequently encountered despite high demand in rural long-term care facilities. CONCLUSIONS: Though uncommon, integrated healthcare remains crucial in addressing long-term care facility residents' complex needs. Healthcare professionals express a strong demand for integrated care in rural areas, citing potential benefits for resident wellbeing, healthcare effectiveness, and job satisfaction. The findings guide healthcare organizations in developing institutional-level strategies for integrated care integration, emphasizing its importance in rural settings.

Pediatric capacity crisis: A framework and strategies to prepare for a pediatric surge.

A pediatric capacity crisis developed across the country in the Fall and Winter of 2022 due to a combination of factors, including a surge in respiratory viruses, staffing shortages, and historical closures of inpatient pediatric units. The COVID-19 pandemic and associated surge in critically ill adult patients demonstrated that health care systems and health care workers can quickly implement creative and collaborative system-wide solutions to deliver the best care possible during a capacity crisis. Similar solutions are needed to respond to future surges in pediatric volume and to maintain a high standard of care during such a surge. This paper aims to build upon insights from the COVID-19 and H1N1 pandemic responses and the 2022 pediatric capacity crisis. We provide specific recommendations addressing governmental/policy, hospital/health care system, and individual clinician strategies that can be implemented to manage future surges in pediatric patient volume.

'Don't let it hold you back' - The experience of transition to adulthood in young people with primary ciliary dyskinesia: An interpretative phenomenological analysis.

Primary ciliary dyskinesia (PCD) is a rare, chronic genetic condition with variable features arising from motile cilia dysfunction, including recurrent respiratory infections, sinonasal disease, reduced hearing, infertility and situs inversus. The aim of the study was to understand the experiences of young people with PCD as they transition into adulthood and adult healthcare services. An interpretative phenomenological analytical method was applied. Semi-structured interviews were conducted with three participants aged 18-24 years. Four interconnected group experiential themes were identified: (1) reconceptualising a stigmatised identity, (2) sharing the journey to independence, (3) entering adulthood with newfound autonomy, (4) anticipating an uncertain future. Overall, we found that transition for young people with PCD presents as a complex period marked by identity-formation, creating systems of support and becoming an autonomous adult. Facilitation of personalised and integrated approaches to care should be prioritised. Our findings are important to help health professionals provide appropriate, anticipatory support.