Complex Health Care Research Articles

Fatigue and fallibility: the perils of prolonged shifts for neonatologists.

Sleep deprivation is a major challenge for neonatologists, who face increasing demands in the complex healthcare system. Current neonatal intensive care unit (NICU) schedule models often include extended shifts and overnight call, which can lead to sleep deprivation. This lack of sufficient sleep poses adverse health risks to neonatologists and can impair cognitive function, which increases the risk of medical errors and compromises patient safety. This paper proposes reducing shift durations and implementing policies and interventions to reduce fatigue among neonatologists and improve patient safety. The paper also offers policymakers, healthcare leaders, and NICU physicians valuable insights on potential ways to promote the health of the neonatologist workforce and safety in the NICU.

Exploring Hormone Therapy Effects on Reproduction and Health in Transgender Individuals.

Transgender individuals often face elevated mental health challenges due to gender dysphoria, but gender-affirming treatments such as surgery and hormone therapy have been linked to significant improvements in mental well-being. The potential influence of time and circadian rhythms on these treatments is prevalent. The intricate interplay between hormones, clock genes, and fertility is profound, acknowledging the complexity of reproductive health in transgender individuals. Furthermore, risks associated with gender-affirming hormonal therapy and potential complications of puberty suppression emphasize the importance of ongoing surveillance for these patients and the need of fertility preservation and family-building options for transgender individuals. This narrative review delves into the intricate landscape of hormone therapy for transgender individuals, shedding light on its impact on bone, cardiovascular, and overall health. It explores how hormone therapy affects bone maintenance and cardiovascular risk factors, outlining the complex interplay of testosterone and estrogen. It also underscores the necessity for further research, especially regarding the long-term effects of transgender hormones. This project emphasizes the critical role of healthcare providers, particularly obstetricians and gynecologists, in providing affirming care, calling for comprehensive understanding and integration of transgender treatments. This review will contribute to a better understanding of the impact of hormone therapy on reproductive health and overall well-being in transgender individuals. It will provide valuable insights for healthcare providers, policymakers, and transgender individuals themselves, informing decision-making regarding hormone therapy and fertility preservation options. Additionally, by identifying research gaps, this review will guide future studies to address the evolving healthcare needs of transgender individuals. This project represents a critical step toward addressing the complex healthcare needs of this population. By synthesizing existing knowledge and highlighting areas for further investigation, this review aims to improve the quality of care and support provided to transgender individuals, ultimately enhancing their reproductive health and overall well-being.

Differences in healthcare service utilization in patients with polypharmacy according to their risk level by adjusted morbidity groups: a population-based cross-sectional study

BackgroundPatients with polypharmacy suffer from complex medical conditions involving a large healthcare burden. This study aimed to describe the characteristics and utilization of primary care (PC) and hospital care (HC) and factors associated in chronic patients with polypharmacy, stratifying by adjusted morbidity groups (AMG) risk level, sex and age, and comparing with non-polypharmacy.MethodsCross-sectional study conducted in a Spanish basic healthcare area. Studied patients were those over 18 years with chronic diseases identified by the AMG tool from Madrid electronic clinical record, which was the data source. Sociodemographic, sociofunctional, clinical and healthcare utilization variables were described and compared by risk level, sex, age and having or not polypharmacy. Factors associated with healthcare utilization in polypharmacy patients were determined by a negative binomial regression model.ResultsIn the area studied, 61.3% patients had chronic diseases, of which 16.9% had polypharmacy vs. 83.1% without polypharmacy. Patients with polypharmacy (vs. non-polypharmacy) mean age was 82.7 (vs. 52.7), 68.9% (vs. 60.7%) were women, and 22.0% (vs. 1.2%) high risk. Their average number of chronic diseases was 4.8 (vs. 2.2), and 95.6% (vs. 56.9%) had multimorbidity. Their mean number of annual healthcare contacts was 30.3 (vs. 10.5), 25.9 (vs. 8.8) with PC and 4.4 (vs. 1.7) with HC. Factors associated with a greater PC utilization in patients with polypharmacy were elevated complexity, high risk level and dysrhythmia. Variables associated with a higher HC utilization were also increased complexity and high risk, in addition to male sex, being in palliative care, having a primary caregiver, suffering from neoplasia (specifically lymphoma or leukaemia) and arthritis, whereas older age and immobilization were negatively associated.ConclusionsPolypharmacy population compared to non-polypharmacy was characterized by a more advanced age, predominance of women, high-risk, complexity, numerous comorbidities, dependency and remarkable healthcare utilization. These findings could help healthcare policy makers to optimize the distribution of resources and professionals within PC and HC systems, aiming for the improvement of polypharmacy management and rational use of medicines while reducing costs attributed to healthcare utilization by these patients.

Health and Health Needs of the Elderly in Camps for Internally Displaced People in Nigeria: Implication for Social Work Practice

This article examines the accessibility of healthcare services by the elderly within a camp for internally displaced people (IDP) in Bakassi, Cross River State in Nigeria. Access to healthcare by the elderly within these camps is a primary concern due to age related conditions resulting from displacement and limited resources. This paper stems from a qualitative study that employed a phenomenological research design. A purposive sampling technique was used to recruit 40 elderly persons (12 males and 28 females). In contrast, a convenience sampling technique was used to recruit two health workers and two government officials for in-depth interviews. Three themes emerged from the findings: access to healthcare services, healthcare needs, and obstacles to accessing healthcare services. Sub-themes from these themes included psycho-social support, physical health, and a clean environment. The study’s findings revealed that the elderly desire psycho-social support to solve their mental health problems arising from the effects of displacement. The findings of this study suggest that social workers and other officials should lead the way in helping displaced elders with complex healthcare requirements. The government should also completely implement Nigeria’s internal displacement strategy. More research is needed on aging requirements in Nigerian refugee camps.

We're implementing AI now, so why not ask us what to do? – How AI providers perceive and navigate the spread of diagnostic AI in complex healthcare systems

Despite high expectations of artificial intelligence (AI) in medical diagnostics, predictions of its extensive and rapid adoption have so far not been matched by reality. AI providers seeking to promote and perpetuate the use of this technology are faced with the complex reality of embedding AI-enabled diagnostics across variable implementation contexts. In this study, we draw upon a complexity science approach and qualitative methodology to understand how AI providers perceive and navigate the spread of AI in complex healthcare systems. Using semi-structured, one-to-one interviews, we collected qualitative data from 14 providers of AI-enabled diagnostics. We triangulated the data by complementing the interviews with multiple sources, including a focus group of physicians with experience using these technologies. The notion of embedding allowed us to connect local implementation efforts with systemic diffusion. Our study reveals that AI providers self-organise to increase their adaptability when navigating the variable conditions and unpredictability of complex healthcare contexts. In addition to the tensions perceived by AI providers within the sociocultural, technological, and institutional subsystems of healthcare, we illustrate the practices emerging among them to mitigate these tensions: stealth science, agility, and digital ambidexterity. Our study contributes to the growing body of literature on the spread of AI in healthcare by capturing the view of technology providers and adding a new theoretical perspective through the lens of complexity science.

‘It’s a lonely journey’: caregiving experiences and psychosocial distress among Chinese American dementia family caregivers

Objectives Chinese American family caregivers of persons with Alzheimer’s disease and related dementia (ADRD) are a vulnerable but understudied population. The goal of this qualitative study was to examine their caregiving experiences and psychosocial distress process and explore intervention strategies. Methods In-depth individual interviews were conducted with 18 Chinese American dementia caregivers. All interviews were transcribed verbatim; thematic content analysis was conducted to construct a conceptual framework. Results All participants reported high levels of caregiving stress associated with care-recipients’ advanced symptoms and required assistance in activities in daily living. The relationship of caregiver and care-recipient was strained in their roles transition. The complex healthcare system, insurance policies, and a lack of linguistically appropriate services aggravated their psychosocial distress. Chinese cultural norms on ‘family harmony’ hindered their seeking of social support. Prolonged caregiving stress led to physical and mental impairment, including poor sleep, depression, and chronic conditions. Participants described their caregiving experience as ‘a lonely journey’ with a pervasive sense of hopelessness and withdrawal; their distress process was positively or negatively influenced by their coping strategies. All participants were eager for any kind of support; especially culturally appropriate programs that could improve their caregiving skills, self-care, and access to services. Conclusion Our data suggest that Chinese American dementia caregivers, especially those with limited English proficiency, experience elevated psychosocial distress, which was aggravated by the barriers to social support and health services due to their immigrant and minority status. Culturally appropriate targeted intervention is urgently needed for this underserved and vulnerable population.

Patient and Care Provider Perspectives on the Management of Fecal Incontinence: A Qualitative Rapid Review

Patient and Care Provider Perspectives on the Management of Fecal Incontinence: A Qualitative Rapid Review

Trends in the primary healthcare nursing workforce in managing diabetes from two sample surveys in 2006-2008 and 2016 in Auckland, New Zealand.

To examine trends in the primary healthcare nursing workforce and their community management of diabetes. Two representative surveys were carried out in 2006-2008 and 2016 among all primary healthcare nurses in Auckland. Nurses were randomly selected, and 26% (n=287) and 24% (n=336) completed a self-administered questionnaire and telephone survey. Biographical information, knowledge of diabetes, how valued nurses felt and diabetes care for patients was provided. Between surveys, numbers of practice nurses have significantly increased, and specialist nurse numbers decreased, while district nurse numbers remained the same. In 2016, practice nurses were younger, more ethnically diverse, more likely to undertake education and had increased knowledge of diabetes and diabetes-related complications (including stroke) compared to nurses in 2006-2008. More nurses consulted patients, conducted foot examinations, addressed serum glucose, medication management, tobacco use and followed up care independently of doctors. In 2016, only 37% of nurses felt sufficiently knowledgeable to discuss medications with patients, <20% could state that hypertension, smoking and dyslipidaemia were major risk factors for complications, and less nurses felt valued. Practice nurses have increased their capacity in diabetes management following global trends and require more support in meeting the complex healthcare needs of people with diabetes.

Models of care and the advanced practice nurse role in caring for children and adolescents with a cancer predisposition syndrome: a scoping review protocol.

This scoping review will examine the literature describing models of care, barriers and facilitators of care, and gaps in care delivery for children and adolescents with a cancer predisposition syndrome (CPS). It will also explore how advanced practice nurses contribute to the delivery of care for children and adolescents with a CPS. Cancer remains a leading cause of death in children and adolescents. Pediatric CPS clinics proactively aim for early diagnosis or prevention of cancer in children and adolescents with a CPS. Additionally, the holistic well-being of individuals requires a multidisciplinary team, including advanced practice nurses, to manage their complex health care needs. This review will consider both published and unpublished literature exploring aspects of models of care and the role of the nurse in pediatric CPS clinics. Literature published in English from 1991 onward will be considered. This scoping review will follow the JBI methodology for scoping reviews. The review will include searches in MEDLINE, Embase, and CINAHL Complete. Gray literature searches will be conducted in OAIster and Social Science Research Network, as well as websites of hospitals in the USA and the UK with large pediatric cancer centers. Two reviewers will screen titles, abstracts, and full-text articles. An extraction table will be used to extract relevant data from all included articles and facilitate data analysis. Results will be presented in narrative and tabular format. Open Science Framework osf.io/axkp7/.

A cross-sectional study examining the nature and extent of interprofessional education in schools of pharmacy in the United Kingdom

BackgroundInterprofessional education can prepare the workforce for collaborative practice in complex health and social care systems.AimTo examine the nature and extent of interprofessional education in schools of pharmacy in the United Kingdom.MethodAn online questionnaire was developed using systems theory, published literature and input from an interprofessional expert panel; it included closed and open-ended questions and a demographic section. Following piloting, it was distributed to 31 schools of pharmacy. Descriptive statistics were used for quantitative data, and a content analysis approach for qualitative data.ResultsTen schools of pharmacy responded. All reported delivering compulsory interprofessional education. Most (80%) reported an interprofessional steering group overseeing development. Formative and/or summative assessment varied depending on year of study. Mechanism and purpose of evaluation varied with respondents reporting Kirkpatrick Evaluation Model Levels 1–3 (100%; 80%; 70%). Two themes were identified: “Variation in Interprofessional Education Approaches and Opportunities” and “Factors Influencing Development and Implementation of Interprofessional Education”. Formal teaching was mainly integrated into other modules; various pedagogic approaches and topics were used for campus-based activities. Respondents referred to planned interprofessional education during practice-based placements; some still at pilot stage. Overall, respondents agreed that practice-based placements offered opportunistic interprofessional education, but a more focused approach is needed to maximise student pharmacists’ learning potential.ConclusionMost interprofessional education offered in undergraduate pharmacy curricula in the United Kingdom is campus-based; the nature and extent of which varies between programmes. Very few examples of practice-based activities were reported. Results may inform future interprofessional education curricular development.

Post-intubation laryngotracheal stenosis: clinical presentation and management approaches

IntroductionAddressing acquired laryngotracheal stenosis presents a complex healthcare dilemma.ResultsWe present a case series of 48 acquired post-intubation laryngotracheal stenosis cases managed within our Department of ENT Surgery at Farhat Hached Tunisia. Diagnosis relied on imaging and endoscopic findings. Among these cases, 28 exhibited tracheal stenosis, with 60% falling into grade 2–3 severity. Management approaches included sole endoscopic dilation for 17 patients, surgical intervention for 19 patients, and T-tube placement for 10 patients.ConclusionsThe management of laryngotracheal stenosis poses a challenge for ENT surgeons. Prevention is paramount, encompassing various measures such as employing high-volume, high tracheostomy, and extended intubation practices.

Sickle Cell Disease Electronic Health Record Population Management Approach to Support Delivery of High-Quality Care: Leaving Paper Lists behind

Children and young adults with sickle cell disease (SCD) require complex health care services to screen for early signs of disease-related complications and to initiate and monitor disease-modifying therapies. Care coordination is challenging as it involves multiple team members across multiple subspecialties. Evidence-based clinical protocols and quality metrics are essential for SCD programs to deliver high-quality care. Systems to track this care delivery are crucial to ensure equitable, accessible care is consistently provided. In 2016, the Comprehensive Sickle Cell Center (CSCC) and the Population Health Innovation Team at Children's Hospital of Philadelphia (CHOP) developed and implemented an electronic health record (EHR)-based system, the SCD patient registry and proactive care outreach tools, to facilitate processes needed to ensure patient service delivery in a timely fashion. We selected Transcranial Doppler (TCD) ultrasounds, hydroxyurea therapy initiation, and annual clinic visits to monitor stroke risk screening, disease-modification therapy, and general chronic illness care. Between January 2015 and June 2023, approximately 1400 patients with SCD were tracked across two CHOP outpatient clinics, the CHOP Philadelphia and CHOP Voorhees campuses. We tracked TCD completion, hydroxyurea prescriptions, and clinic visits per year for age-eligible patients with SS and SB0thal. Prior to implementation of the EHR-based tools and new workflows in October 2016, for age-eligible patients, on average 75% of patients had received annual TCD screening, 55% of patients had received hydroxyurea prescriptions within the prior 6 months, and 85% had attended outpatient hematology clinic at least twice within the year. As of June 2023, on average, completed TCD visits had increased to 91%, patients prescribed hydroxyurea had increased to 78%, and patients attending 2 clinic visits within a year had increased to 89%. These metrics remained consistent and improvement was sustained despite the COVID-19 pandemic. Table 1 describes the drivers influencing these improvements, which included various interventions involving social work, nursing, community health workers, registrars, care coordinators, and physicians. Figure 1 illustrates the changes achieved over time in rates of TCD completion, hydroxyurea prescriptions, and clinic visit attendance. This implementation of an SCD EHR-based population health tool and new care team workflows facilitated more efficient processes for various care team members and improved our ability to consistently provide timely services to children and young adults with SCD. This resulted in sustained improvement in all metrics and high-quality care for our patients.

Inequities in Time Spent Coordinating Care for Children and Youth With Special Health Care Needs.

In the United States, caregivers of children and youth with special health care needs (CYSHCN) must navigate complex, inefficient health care and insurance systems to access medical care. We assessed for sociodemographic inequities in time spent coordinating care for CYSHCN and examined the association between time spent coordinating care and forgone medical care. This cross-sectional study used data from the 2018-2020 National Survey of Children's Health, which included 102,740 children across all 50 states. We described the time spent coordinating care for children with less complex special health care needs (SHCN) (managed through medications) and more complex SHCN (resulting in functional limitations or requiring specialized therapies). We examined race-, ethnicity-, income-, and insurance-based differences in time spent coordinating care among CYSHCN and used multivariable logistic regression to examine the association between time spent coordinating care and forgone medical care. Over 40% of caregivers of children with more complex SHCN reported spending time coordinating their children's care each week. CYSHCN whose caregivers spent ≥5h/wk on care coordination were disproportionately Hispanic, low-income, and publicly insured or uninsured. Increased time spent coordinating care was associated with an increasing probability of forgone medical care: 6.7% for children whose caregivers spent no weekly time coordinating care versus 9.4% for<1hour; 11.4% for 1 to 4hours; and 15.8% for ≥5hours. Reducing time spent coordinating care and providing additional support to low-income and minoritized caregivers may be beneficial for pediatric payers, policymakers, and health systems aiming to promote equitable access to health care for CYSHCN.

A77Translational simulation in practice: an enhanced orthopaedic induction for new trainees

The gap between imagined and realized healthcare practice is indisputable. For trainees who rotate between departments, the challenges of navigating complex healthcare systems are unmet by standard induction programmes [1,2]. Our simulation centre and orthopaedic department collaborated to create an enhanced departmental induction using immersive simulation. Following a thorough needs assessment for new trainees rotating to trauma and orthopaedics. We looked at previous trainee feedback, adverse event data from our safeguarding reporting system, and expert opinion from orthopaedic staff. It became clear that at times of transition, the process of accessing timely and appropriate support was challenging. Furthermore, there were a myriad of clinical duties and patient cohorts covered by the trauma team. Working within this dynamic and complex structure was difficult for new trainees. We used team-informed process mapping to define the escalation systems in place, and the distinct roles within the team. We identified key learning objectives for a simulation induction session. We used a case vignette of an unwell trauma patient and aligned the scenario design to the required learning objectives on clear escalation pathways and whole team working within a complex environment. Following a successful pilot run, this enhanced induction is routinely delivered four monthly for junior doctors rotating to the orthopaedic department. Current trainees, orthopaedic consultants, and senior managers also attend this trainee induction as an open forum for dialogue on service improvements. All participants have rated these sessions as good or excellent; they value the whole team approach and repeatedly ask for further simulation sessions. Feedback from other members of the trauma team following these sessions commented on increased connection within the team, which included junior trainees attending departmental meetings. The orthopaedic team also felt that, following the induction programme, new trainees had demonstrated improved handover skills when escalating unwell patients. This whole team simulation-enhanced approach to orthopaedic induction is novel, and in contrast to the majority of standardized induction programmes [3]. This work provides a template that can be applied to different healthcare systems. By delivering constructively aligned simulation sessions, we can improve team training and enable new trainees to flourish during periods of transition. Authors confirm that all relevant ethical standards for research conduct and dissemination have been met. The submitting author confirms that relevant ethical approval was granted, if applicable.

Integrated care for older persons who live with complex health and social care requirements: a core set of indicators

PurposePerformance measures are an important mediating mechanism that influences the design and delivery of care. Unfortunately, it is still commonly the case that acute care indicators are employed to assess the efficacy of integrated care. This hinders the ability to accurately assess and continuously improve integrated care efforts for priority populations, including older persons who live with complex health and social care requirements. A core set of indicators is needed from which to assess the quality and impact of integrated care on these older persons and care partners.Design/methodology/approachA modified Delphi process was employed that comprised of the following steps: (1) selection of an indicator inventory (2) defining criteria for ranking and achieving consensus, (3) recruiting participants, (4) iterative voting rounds and analysis and (5) selection of a core indicator set.FindingsThe study produced a core set of 16 indicators of integrated care that pertain to older persons who live with health and social care requirements. The set can be applied by health and social care organizations and systems to assess the quality and impact of integrated care for this population across the continuum of care.Research limitations/implicationsAlthough the gap in the availability of relevant indicators was the impetus for the study, this also meant there was a dearth of validated indicators to draw from. There are significant gaps in commonly used data sets with respect to indicators of integrated care as it relates to older persons and care partner.Practical implicationsThe indicator set is intended to follow the older person and care partner throughout their health journey, enabling a whole systems view of their care. The set can be used in full or in part by health and social care systems and organizations across various primary, acute, rehabilitative and community settings for program development and evaluation purposes.Social implicationsThe core set of indicators that emerged out of this study is a first step toward ensuring that older persons who live with complex health and social care requirements and their care partners receive quality integrated care across the continuum of care.Originality/valueThe findings are informed by the perspectives of older persons, care partners and healthcare professionals. Future research is needed to test, validate and potentially expand the indicator set.

An exploration of access to healthcare for women experiencing homelessness in Northern Ireland

Abstract Background People experiencing homelessness have poorer health than the general population. Therefore, they are more likely to struggle with accessing healthcare, described in the Inverse Care Law. To date, there has been no peer reviewed research published from Northern Ireland on the topic of homelessness and health. Data published in recent reports shows a rise in the number of women experiencing homelessness in Northern Ireland. This research asks about the nature of access to healthcare for women experiencing homelessness in Northern Ireland and how can it be improved. Methods Semi-structured interviews were conducted with women experiencing homelessness, hostel staff and healthcare staff. Following the interviews, a stakeholder workshop was hosted to gather views from stakeholders in policy, planning and healthcare education. Data were analysed following Reflexive Thematic Analysis. Results There were 19 participants interviewed. All participants were female. Healthcare and hostel staff experience ranged from 1 year to over 30 years and included staff from each of the Health Trusts around Northern Ireland. The interviews were followed by a stakeholder workshop with 13 participants representing various groups and organisations. Preliminary themes constructed during Reflexive Thematic Analysis include health and social care complexities, awareness of services and needs, relationships, system design and connectedness. Conclusions Preliminary conclusions confirm both supply and demand side barriers for access to healthcare for women experiencing homelessness in Northern Ireland, also included are recommendations for practice in Northern Ireland to improve this access journey. There is need for increased awareness of services for and needs of WEH, through improving service navigation and providing training for health and hostel staff. Alongside this, is the need for improved connectedness between services, both with referral and data sharing. Key messages • Women experiencing homelessness have complex health and social care needs that impact how they access healthcare. • This research is the first of it’s kind in Northern Ireland and provides insights into how to improve access to healthcare for women experiencing homelessness.

The importance of patient-specific resources for families dealing with prenatal rare diseases.

Rare diseases (RDs) are defined as diseases that affect a low number of the population. Prenatal diagnoses of RDs can add a lot of unique stress for parents. For example, parents who have prenatal diagnoses experience not only grief of expectation, but are forced to become patient advocates with incomplete information as their child is not yet born, and in many cases parents experience a lot of uncertainty. This typically involves seeking support groups and finding pre- and postnatal specialists all which come with mental and financial cost. Here we discuss the importance of targeted patient resources for parents to help alleviate some of their stress. Patient advocacy organizations can be incredibly useful for parents to navigate the complex healthcare system and help mitigate feelings of isolation, especially when parents can talk to others in a similar situation. We collaborated with a patient organization to create a prenatal parent support guide to address how parental needs such as mental well-being and practicing self-care can be met. We hope that resources such as these can help empower those with a pregnancy affected with a RD diagnosis.

Hierarchical task analysis as a systems mapping tool in complex health care environments: Emergency department response to chemical, biological, radiological, and nuclear events

AbstractThe emergency department (ED) is at the forefront of the chemical, biological, radiological, and nuclear (CBRN) response. This study adopted a multilevel systems approach using the human factors/ergonomics (HFE) method of hierarchical task analysis (HTA) with document analyses of CBRN plans to represent work‐as‐Imagined. Work‐as‐imagined was compared with data from semistructured interviews using prompt cards for CBRN scenarios (n = 57) representing work‐as‐done. The aim was to provide methodological evidence for the use of HTA with an empirical synthesis of the ED in response to CBRN events. HTA was the preferred systems mapping tool because it aligns with a systems thinking approach, allows multiple‐level comparisons, highlights variability, and has an established usability track record. This study demonstrates the usability of HTA in the context of the ED responding to a CBRN event. The findings for core CBRN concepts included (1) liaise and communicate, (2) isolate and contain, and (3) personal protective equipment.

Enhancing Transsectoral Interdisciplinary Patient-Centered Care for Patients With Rare Cancers: Protocol for a Mixed Methods Process Evaluation.

Rare cancers account for approximately 24% of all new cancers. The category of rare tumor diseases includes almost 200 different entities. In particular, the treatment of patients with extensive care needs requires cooperation between service providers, both between sectors (outpatient and inpatient) and within sectors (eg, between different medical disciplines). The treatment pathway is associated with a high need for coordination and information sharing between providers. When crossing sectoral boundaries in the German health care system, interface problems between the outpatient and inpatient sectors can lead to gaps in care delivery. The multicomponent program Trans-sectoral Personalised Care Concept for Patients with Rare Cancers aims to optimize transsectoral cooperation and coordination of care to enhance patient involvement and the medical care coordination of patients with rare cancers. This process evaluation will contribute to answering questions about intervention fidelity and the implementation of transsectoral communication, identifying and describing the intended and nonintended effects of the intervention, and exploring the barriers to and facilitators of the implementation. We will include patients who participate in the intervention phase; all persons and staff involved in the development and implementation of the intervention (Onco Coach, psychologists, physicians on the contact platform, IT staff, and staff of the Bavarian Association of Statutory Health Insurance Physicians); physicians from the Ludwig-Maximilians-University Hospital Munich and the hospital of the Technical University Munich who are involved in the treatment of patients during the course of the project; and participating office-based hematologists and oncologists. Data collection will be conducted at the beginning, during, and at the end of the intervention using mixed methods. Data will be collected from questionnaires, document analyses, semistructured interviews, and structured observations and will cover different aspects of process evaluation. These include examining the context to explore existing patterns, changes in patterns, attitudes, and interactions; analyzing the implementation of intervention elements; and exploring the complex causal pathways and mediators of the intervention. Qualitative data will be analyzed using thematic analysis. The data will then be combined using between-methods triangulation. This project received funding on March 1, 2022. The intervention phase and recruitment for the process evaluation began on March 1, 2023, and the recruitment is expected to end on September 30, 2025. At the time of protocol submission in June 2023, a total of 8 doctors from hematology and oncology practices were enrolled. Data collection began on March 14, 2023. The Trans-sectoral Personalised Care Concept for Patients with Rare Cancers project is a complex intervention that is to be implemented in an equally complex health care context. The process evaluation will help understand the influence of contextual factors and assess the mechanisms of change. ISRCTN registry ISRCTN16441179; https://doi.org/10.1186/ISRCTN16441179. DERR1-10.2196/49731.

“It starts with a knock on the door”: Caregiver and provider perspectives on healthcare communication for youth with intellectual and developmental disabilities

ObjectivesEffective healthcare communication (HCC) is critical for youth with intellectual and developmental disabilities (IDD) who may have complex healthcare needs. The goal of this study was to gain family caregiver and provider perspectives on facilitators and challenges to effective HCC for youth with IDD. MethodsCaregivers of, and providers for youth with IDD were recruited from the community to participate in virtual focus group (FG) sessions. FGs were 60–90 min long and were facilitated by a research team consisting of caregivers and providers. The FGs were recorded, transcribed, and coded inductively for HCC themes. ResultsNineteen stakeholders participated in the FGs (caregivers: n = 14; providers: n = 5). Twenty-three themes were coded from the transcripts and were categorized by whether they focused on providers, caregivers, or healthcare systems. ConclusionsProvider behaviors such as active listening and demonstrating humility were found to be critical for effective HCC. Fewer caregiver factors, such as advocacy, and systems factors such as visit format, emerged from the FG data. FG themes represent challenges that future interventions must address. Practice ImplicationsEfforts to improve HCC, and thus healthcare outcomes for youth with IDD, should address challenges identified by caregivers and providers.