Multidisciplinary Care Research Articles

Orofacial features and dental management of a pediatric patient with moyamoya disease-A one year follow up.

Moyamoya disease (MMD) is a chronic cerebrovascular disorder increasing stroke risk. This study presents a four-year-old MMD patient, discussing her multidisciplinary care plan including dental, behavioral, and medical management. It emphasizes the need for awareness among oral physicians and suggests further research due to the rising prevalence of MMD. Moyamoya disease (MMD) is a chronic cerebrovascular disorder that narrows major blood vessels in the brain, reduces blood flow, and increases the risk of stroke. The purposes of this study were to: (1) present the case of a four-year-old patient diagnosed with MMD; (2) discuss important aspects of her multidisciplinary care plan involving dental, behavioral, and medical management; and (3) suggest approaches and recommendations for health care providers. A four-year-old Middle Eastern female diagnosed with MMD, neurogenic bladder, chronic constipation, hyperactivity, and delayed milestones presented to the dental clinic with her parents seeking dental care. The child was referred by a pediatric neurologist for dental care. In the present case, there were no specific oral manifestations. However, oral physicians should be aware of possible behavioral management modalities when providing dental care to pediatric patients, including those diagnosed with MMD.

A case study of consecutive pregnancies in a woman with liver cirrhosis and portal hypertension

Pregnancy in women with liver cirrhosis is a high-risk one that requires multidisciplinary care. Variceal bleeding occurs in up to half of women having associated portal hypertension and confers the greatest risk. Despite advances made in the management of such cases, maternal morbidity remains high. Pregnancy is rare in women with liver cirrhosis due to reduced natural fertility rates. We report a case of two consecutive pregnancies in a woman with liver cirrhosis. A 29-year-old primipara with hepatitis B-related liver cirrhosis with portal hypertension who had been on tenofovir for the past seven years. The first pregnancy was spontaneously conceived but the second was by assisted conception. Both pregnancies were complicated by recurrent episodes of variceal bleeding that necessitated multiple endoscopic variceal band ligation (EVBL) during pregnancy. Medical advancement has enabled women with cirrhosis to have more pregnancies with reduced maternal and perinatal morbidities. Multidisciplinary management is vital to achieving favourable pregnancy outcomes.

Impact of Surgeon-Radiation Oncology Dyads in Oral Cavity Cancer Outcomes.

Multidisciplinary care is paramount in patient-specific decision making, especially as pertaining to oral cavity squamous cell cancer (OCSCC) treatment. Protracted surgery-postoperative-radiation (S-PORT) has a detrimental impact on OCSCC patients' outcomes. This study examined the impact of surgeon-radiation oncologist dyads on the treatment of OCSCC, focusing on S-PORT interval and disease specific outcomes. All OCSCC patients treated in a tertiary cancer center between 2009 to 2017 were included. Patients were categorized into "dyad" and "nondyad" groups defined as whether they were treated by a paired surgeon-radiation oncology team with joint multidisciplinary clinic or shared >30% patient volumes. Univariate and multivariate logistic regression were performed to identify factors associated with a prolonged S-PORT time interval (≥8 weeks). Overall survival and locoregional recurrence were estimated and compared. A total of 444 OCSCC were eligible. Treatment by a dyad was significantly less likely associated with S-PORT ≥ 8 weeks (odds ratio [OR]unadjusted: 0.65; 95% confidence interval [CI] 0.44-0.96; p = 0.03). Obtaining pre-operative radiation oncology consultation also decreased the S-PORT interval. Advanced T-category and the need for free tissue flap reconstruction increased the likelihood of prolonged S-PORT on univariate but not multivariate analysis. No significant differences were observed in overall survival or locoregional recurrence by dyad status nor S-PORT (p > 0.05). Surgeon-radiation oncology dyads significantly minimized time from surgery to postoperative radiation in OCSCC. While improvement in overall survival or locoregional recurrence was not observed, these findings support close knit collaborative multidisciplinary treatment care models, including dyad-based care.

HIV and cardiovascular risk: should we use other targets for cholesterol control? Brazilian data compared to major studies

Abstract In daily clinical practice, cardiologists are confronted with patients with HIV/AIDS and this population needs special attention due to their higher cardiovascular risk. Studies show an increase in cardiovascular disease (CVD) among people with HIV/AIDS and one of the main causes of death in this group. HIV is associated with dyslipidaemia and endothelial damage, which have been proposed as a cause of the increased risk of events, and HIV replication is a determining factor in endothelial dysfunction. With antiretroviral therapy (ART) there has been a reduction in morbidity and mortality from HIV/AIDS, however, several studies have shown an increase risk factors for CVD in this population, both in individuals on ART and those not on it. Two high-impact studies related to cardiovascular risk in the HIV population are Start and Smart. Studies are important for understanding this occurrence and its relationship with the presence of the virus and the use of antiretroviral therapy in this population. In view of the higher cardiovascular risk of these patients and the question of whether they deserve a different cholesterol target from other populations. Methods A retrospective, observational study was carried out on a sample of HIV patients from the Brazilian STD/AIDS Reference Centre (CRT), selected by lottery using their registration number, from 1 January 2011 to February 2023, aged over 18. 148 medical records were assessed and the following were collected population characteristics. Discussion: the CRT data were compared with the Start and Smart studies. The Reprieve study showed benefits earlier than expected with patients receiving a statin. An interim analysis revealed a 35 per cent reduction in serious adverse cardiovascular events in the statin group, leading to the placebo group stopping earlier. The viral load varied between the studies, with CRT having an average of 500,000 copies/ml, Start 12,759 copies/ml and Smart less than 400 copies/ml. Studies have associated HIV infection and higher viral loads with impaired endothelial function and vasodilation. Despite the data in the literature, all the patients with heart disease had undetected viral loads and CD4+ cell counts above 500 cells/mm³. Those with a high viral load in the study were not the ones with CVD. Conclusions In CRT, the percentage of primary events attributable to serious conditions unrelated to AIDS was 1.3 per cent. Analysing biomarkers could elucidate the effects of antiretroviral therapy on arterial disease. Another fact that probably justifies the low occurrence of cardiovascular and cerebral events in CRT is the multidisciplinary care given to patients, providing intensive primary and secondary prevention through counselling and follow-up. We suggest better control of cardiovascular risk factors with multi-professional intervention and more aggressive targets for the control of comorbidities.Characteristics and Cardiovascular risk

Integrated care in the Baltic states over a 5-year period: progress, challenges and future directions

Abstract Person-centered, multidisciplinary care is key to addressing evolving complex health needs. In Estonia, Latvia, and Lithuania, this pursuit of integrated care has gained momentum as an innovative approach to allocate resources more efficiently and improve patient outcomes. This study investigates the progress of integrating care in the Baltic countries from 2019 to 2024. It details key learnings, particularly for small European countries with limited resources. The Health Systems and Policy Monitor Network of the European Observatory on Health Systems and Policies undertook a cross-country study to better understand the progress in care integration in the Baltics. The Network’s Baltic country experts completed a 21-item questionnaire on the adoption of integrated care reforms. Responses were analyzed to capture reform characteristics and commonalities, countries’ political environments and their conduciveness to the uptake of integrated care. Country-specific experiences with the implementation of integrated care were further explored via case studies of pilot programs over the five years. The pace of implementing integrating care reforms varied in each country. Existing regulatory barriers, workforce challenges and payment schemes have impeded integration efforts across health and social care. Despite these obstacles, the political commitment to new and innovative service delivery and collaboration for chronic care management underscores an important prerequisite toward achieving more integrated and person-centered healthcare. The three case studies illustrate the hurdles that come with shifting care settings and expanding roles for some workers. Findings stress the role for integrated care to address organisational challenges in the Baltics. This study highlights innovative approaches and long-running efforts to provide multidisciplinary care for complex-needs patients and the implications of their results for broader health system adoption. Key messages • Small countries like the Baltics face structural challenges in integrating care to improve outcomes and efficiency. • Investment and innovative care approaches are key to further advancements.

Empowerment and interprofessional collaboration in health promotion centre Murska Sobota

Abstract Background Health promotion centres (HPCs) were introduced in Slovenian primary health care centres to provide interventions against risk factors for noncommunicable diseases (NCDs). HPCs integrate a multidisciplinary and community-based primary care approach to the prevention of NCDs and provide free lifestyle intervention programmes. This study aims to explore the perspectives of health care professionals on promoting health of local community members, as well as their perceptions of interprofessional collaboration in HPCs. Methods Two group discussions were conducted with a total of 11 health care professionals at the HPC Murska Sobota. Data collection was accompanied by a dual role interpreter in accordance with the principles of cross-language qualitative research. The data was transcribed, semantically translated and thematically analysed. Results Health care professionals emphasize the importance of health-related empowerment of individuals for the success of health promotion activities and therefore for the improvement of individuals’ quality of life. This is based on shared decision-making, self-management and educational measures in a combination of population- and individual-based approaches. The need for efficient interprofessional communication, characterized by a flat hierarchy, is stressed. Structured cooperation with other health care facilities, as well as close collaboration with communities and local media, are described as crucial for reaching all individuals and promoting health equity. Conclusions Interprofessional collaboration, health-related empowerment of individuals and collaboration with local communities are fundamental for the success of health promotion activities, achieving health equity and preventing NCDs. Understanding how these activities are implemented from the health care professionals’ perspective can help other health facilities developing and improving local health promotion strategies. Key messages • Slovenian health care professionals see interprofessional collaboration as fundamental for the implementation of health-promotion strategies. • Health-related empowerment of individuals and collaboration with local communities play an important role in achieving health equity in health promotion activities.

Clinical outcomes in patients with unintended pregnancy after liver transplantation: A multicenter registry cohort study.

The consequences of unintended pregnancy in liver transplant (LT) recipients, a growing part of the high-risk obstetric population, remain unknown. To fill this gap, we conducted a retrospective registry cohort study to describe the risk factors, obstetric and neonatal morbidity, and graft outcomes associated with unintended pregnancy after LT. This study utilized the Transplant Pregnancy Registry International (TPRI) and included 565 pregnancies of LT recipients between 1967 and 2019 from 289 hospitals, primarily in North America. The primary outcome of acute cellular rejection (ACR) and secondary outcomes of graft loss, severe maternal morbidity, and neonatal composite morbidity were compared by pregnancy intention. The study population included 60.9% with intended pregnancies and 39.1% unintended pregnancies. Recipients with unintended pregnancy were more likely to self-report as Black race, to be younger, nulliparous, and have exposure to teratogenic immunosuppression. ACR was more common with unintended pregnancy (3.7% vs 1.2%, p=0.047). Unintended pregnancies had lower median birth weight (2806.6 vs 2948.4 grams, p=0.033). Unintended pregnancy was not associated with increased neonatal morbidity or severe maternal morbidity. These findings underscore the importance of family planning counseling, access to safe and effective contraceptive options, as well as multidisciplinary prenatal care in the growing population of reproductive-aged LT recipients.

Primary clinics achieving regular follow-up of patients: Teamwork aspects among healthcare staff

Abstract Backgrounds Studies have shown that more temporally regular primary care visits, or visits more evenly spaced in time, are associated with improved patient outcomes. However, no study has examined what clinic staff can do to encourage greater temporal regularity (TR). We aimed to understand factors related to healthcare staff dynamics that contribute to higher TR for adults with chronic conditions. Methods The study is part of a two-stage mixed methods project. In the first stage, we ranked clinics according to their TR level. In this qualitative stage, we interviewed staff at 6 clinics with extremely high TR (regular follow-up with primary care physician, or PCP), and 6 clinics with extremely low TR. Interviews were conducted with 15 PCPs, 12 nurses, 15 administrative staff, and 4 pharmacists between July 2022- September 2023. Interviews were audiotaped, transcribed, and analyzed using Atlas qualitative analysis software. Findings Themes emerged regarding best ways to promote regular follow-up of patients with chronic conditions. Strategies included having a defined system to reach out to no-show patients, having routine staff meetings to discuss no-shows, adapting workflow to meet the needs of challenging patients, dealing with bureaucracy on patients’ behalf, informal channels of communication with patients, and consulting social workers more often. Relational aspects among staff members at high TR clinics emphasized flat as opposed to hierarchical relationships, as well as high levels of teamwork. Conclusions Teamwork between staff members in primary care settings can contribute to more proactive care delivery, with greater potential to prevent long-term complications. The findings suggest that a high-functioning multidisciplinary care team that focuses on creating the right sorts of interactions and teamwork among staff members, and uses proactive strategies to help engage patients, can contribute to more temporally regular care and thus improved outcomes. Key messages • Stronger teamwork and flat relationships between staff members in primary care settings can result in proactive medicine and developing strategies that improve patients’ regular follow-ups. • Programs focusing on how medical staff utilize their dynamics/relations to improve health outcomes and how doctors’ role align with the staff, can facilitate regular follow-ups of challenging patients.

The Effect of Multidisciplinary Care on Polypharmacy in Advanced Cancer Patients near the End of Life

Abstract Objectives Multidisciplinary Team (MDT) aims to integrate cancer patient care plans and provide holistic care to improve clinical outcomes and quality of life. However, there is a lack of empirical evidence regarding the effect of MDT on polypharmacy in advanced cancer patients near the end of life, which warrants further investigation. Methods This retrospective cohort study utilizes the National Health Insurance Research Database (NHIRD), Taiwan Cancer Registry, and Cause of Death Statistics, provided by the Health and Welfare Data Science Center (HWDC), Ministry of Health and Welfare (MOHW). The study subjects were patients who were diagnosed with stage III or IV cancer, aged 65 or above, experienced recurrence or metastasis, and who died between 2014 and 2020. Propensity score matching (PSM) was employed, followed by analysis using the Generalized Estimating Equation (GEE) to examine the differences in the risk of polypharmacy in the last 30 days before death. In addition, to confirm the robustness of the results, we conducted two different sensitivity tests: the first way is to use different ages as sample selection criteria and only include people who died over 75 years old as study subjects; the second way is to use conditional logistic regression models as a multivariate statistical method. Results There were 35537 samples before matching, including 4942 who received MDT care and 30595 who did not. After 1:1 matching, 9884 patients were finally included in the analysis. The prevalence of polypharmacy significantly decreased during the study period from 59.90% to 58.80% (p = 0.03; trend test). When examined through different PIM criteria, patients who received care from MDT exhibited a lower risk of polypharmacy (OR = 0.91, 95% CI = 0.84-0.98). Conclusions Advanced cancer patients who received care from MDT during the end-of-life period had a significantly lower risk of polypharmacy. Key messages • The prevalence of polypharmacy significantly decreased during the study period from 2014 to 2020 among advanced cancer patients. • Advanced cancer patients who received care from MDT during the end-of-life period had a significantly lower risk of polypharmacy.

Feasibility and end-user perceptions of a novel digital care assistant and support program for people after stroke or transient ischemic attack (CAPS)

Abstract Background The Care Assistant and support Program for people after Stroke (CAPS) or transient ischaemic attack (TIA) is a clinician-led program designed to improve the secondary prevention of stroke. The program combines person-centred goal setting and risk-factor monitoring through a web-based clinician portal, SMS goal-aligned messages, a mobile application (app), and a wearable device. We aimed to determine the feasibility of CAPS among people living with stroke or TIA, and clinicians who would deliver the program in future. Methods Open label single group pre-posttest mixed-methods evaluation of the 12-week program. Eligible lived-experience participants were recruited through the Australian Stroke Clinical Registry. Eligibility: diagnosis of stroke or TIA in preceding 6 months - 3 years, ≥18 years old, smartphone/tablet ownership, living in the community. Following surveys and interviews of lived-experience participants, ten clinicians experienced in stroke care were invited to participate in focus groups to discuss the program. We used descriptive statistics to evaluate feasibility outcomes, i.e. participant perceptions of usability, acceptability and satisfaction, and clinician perceptions on program design and delivery. Results From 600 invitations, 34 eligible participants commenced the program (27% female, 33% TIA, median 1.7 years from index event; one withdrew). Usability of the CAPS app was rated as ‘Good’ to ‘Excellent’ (System Usability Scale), with moderate sustained usage by study conclusion (>60%). Participants frequently reviewed their health data within the app (average twice a day/participant over 12 weeks), and entered their health measurements an average 73 times/participant. The majority (≥90%) of participants thought the program fitted well into their daily lives or helped engage them in self-monitoring, with 76% indicating they would use the program, if publicly available. Clinician participants included three nurses, three allied health professionals, two neurologists, a stroke consultant, and a general practitioner (GP) in focus groups. Overall, eight had positive perceptions of the CAPS program. Three clinicians indicated the measurements collected in the app captured "vital information", and five saw the value of CAPS to improve secondary prevention. Recommended modifications to the program included tracking atrial fibrillation and blood cholesterol. Seven believed participants would receive the most benefit from the program if delivered within three months post-discharge. Six indicated that GP-led multidisciplinary care was the best model to deliver CAPS. Conclusions The CAPS program was feasible to deliver and acceptable to people living with stroke or TIA. Clinicians saw the value of CAPS for secondary prevention, with feedback prompting further focus groups with GPs to develop the potential model of care. Findings have informed the design of a Phase II randomised feasibility trial.

Enhancing chronic disease management through physical activity and pedometry-based health monitoring.

Physical activity (PA) is a vital component in the management of chronic diseases, including cardiovascular, metabolic, and musculoskeletal conditions. In rheumatic diseases (RDs) such as rheumatoid arthritis (RA), systemic lupus erythematosus (SLE), and osteoarthritis (OA), PA has been shown to alleviate symptoms, enhance functional capacity, and improve quality of life. Given these advantages, wearable trackers and smartphone apps have revolutionized PA monitoring, offering quantitative reports of step counts, sedentary behavior, intensity, and energy expenditure. Pedometry-based health monitoring aids in evaluating patients' adherence to exercise regimens, tracking disease progression, and customizing interventions to meet individual needs. Patients with RDs often encounter barriers to maintaining regular PA, including joint pain, fatigue, and comorbidities, which complicate adherence and elevate the risk of adverse events. This overview delves into the dual role of PA in fostering health and managing disease in RD patients. Despite enormous benefits, it is essential to recognize limitations and risks of PA, particularly for individuals with high disease burden and multiple comorbidities. The findings emphasize the importance of integrating tailored PA programs within a multidisciplinary care framework to optimize patient outcomes.

CEPARM: Four decades of dedication to advancing Familial Amyloidotic Polyneuropathy research and patient care

This paper delves into the remarkable journey of theCentro de Paramiloidose Antônio Rodrigues de Mello (CEPARM),located at the Hospital Universitário Clementino Fraga Filho(HUCFF) of UFRJ, over the past four decades, from itsestablishment in 1984 to its emergence as a pioneering institution inthe so called field of Familial Amyloidotic Polyneuropathy (FAP).Founded in response to the urgent need for specialized researchand treatment of this rare genetic disorder prevalent amongindividuals of Portuguese descent mainly with expressivePolyneuropathy (Hereditary Transthyretin Amyloidosis withPolyneuropathy - hATTR-PN) or even Cardyomyopathy (HereditaryTransthyretin Amyloidosis with Cardyomyopathy hATTR-CM),CEPARM has played a crucial role in the evolution of this field.The paper offers a comprehensive overview of thecenter’s development, emphasizing its major achievements,research contributions, and advancements in patient care. Ithighlights CEPARM’s pivotal role in developing innovativetreatment protocols, including the introduction of livertransplantation for FAP and groundbreaking therapies such astafamidis, patisiran, inotersen, vutrisiran, and eplontersen.Additionally, the paper explores CEPARM’s efforts to enhancepatient quality of life through multidisciplinary care and supportprograms.By reflecting on the center’s historical milestones,leadership transitions, and ongoing initiatives, this paperunderscores CEPARM’s unwavering commitment to advancingscientific knowledge and improving patient outcomes mainly in therealm of hATTR-PN.

Impact of Atezolizumab + Bevacizumab Therapy on Health-Related Quality of Life in Patients with Advanced Hepatocellular Carcinoma

Background/Objectives: Health-related quality of life (HRQoL) is critical in patients with hepatocellular carcinoma (HCC). It has become a key endpoint in the evaluation of new therapies, including atezolizumab + bevacizumab (Atezo + Bev) therapy. Methods: This study explored the factors associated with treatment efficacy, treatment duration, and overall survival (OS) in patients with advanced HCC undergoing Atezo + Bev therapy. We included 58 consecutive patients with HCC receiving Atezo + Bev from 19 November 2020, to 28 December 2023, who were followed up until the end of the study or death. We analyzed the relationships between baseline characteristics, adverse events (AEs), and HRQoL and efficacy, OS, and treatment duration. Results: The demographic (older men) and baseline characteristics (Child–Pugh score of 5, Barcelona Clinic Liver Cancer Stage C) were consistent with those of previous studies. The treatment demonstrated promising efficacy with a disease control rate of 71.2%, but HRQoL scores in five functional domains and seven symptoms worsened significantly within the first 3 months. Notably, better baseline cognitive and physical function scores and absence of severe (grade ≥ 2) hypoalbuminemia were associated with an improved objective response rate, longer treatment duration, and better OS. Conclusions: These findings underscore the importance of monitoring and managing treatment-related AEs and maintaining the HRQoL. They also highlight the crucial and reassuring role of multidisciplinary care in enhancing treatment outcomes in this cohort.

A benign tumor of substantial size: Mandibular epithelioid osteoblastoma in a socioeconomically challenged patient

Epithelioid osteoblastoma (EOB) is a rare, benign bone tumor characterized by the proliferation of atypical epithelioid osteoblasts within a vascular stroma. It typically presents as a slow-growing painful mass and requires careful differentiation from more aggressive lesions like osteosarcoma for appropriate management. We present a case of an otherwise healthy 30-year-old man who presented with a mandibular EOB measuring 23 cm × 17 cm x 19 cm, causing significant disfigurement and functional impairment. Surgical management involved radical resection and immediate reconstruction using an osteocutaneous fibula free flap. The case emphasizes the importance of multidisciplinary care, advanced surgical planning, and the impact of socioeconomic factors on healthcare access and outcomes.

Nursing Roles in Extracorporeal Membrane Oxygenation

ABSTRACT Extracorporeal membrane oxygenation (ECMO) is a type of mechanical circulatory support that is increasingly utilized in the United States for severe respiratory and/or cardiac failure refractory to conventional therapies. It is an expensive and complex life support modality. Moreover, patients on ECMO are critically ill and require a strong multidisciplinary care team. A successful ECMO program involves a trained team consisting of physicians, perfusionists, nurses, and respiratory therapists. This article discusses the multiple roles of ECMO nurses, the various ECMO delivery care models, and the potential cost savings of an RN ECMO specialist staffing model—and introduces the novel role of the ECMO lead.

Practices and Barriers in Implementing the Low FODMAP Diet for Irritable Bowel Syndrome Among Malaysian Dietitians: A Qualitative Study

The low fermentable oligo-, di-, mono-saccharides and polyols (FODMAP) diet (LFD) is a second-line dietary intervention for irritable bowel syndrome (IBS) patients, involving FODMAP restriction, reintroduction, and personalization, and it needs to be delivered by dietitians. However, the application of this diet among Malaysian IBS patients is not well understood. This study aimed to explore the practices and barriers in delivering the LFD among Malaysia dietitians. Semi-structured qualitative interviews were conducted online with practicing dietitians until the data reached saturation. All the interview sessions were audio recorded and transcribed verbatim. Thematic analysis was used to analyze the data. Eleven dietitians were interviewed, with 36.4% (n = 4) having more than 10 years of experience. The following four themes regarding their practices emerged: 1. dietary advice on FODMAP restriction; 2. duration of FODMAP restriction phase; 3. references used to get information about FODMAPs, and 4. strategies on reintroduction. Meanwhile, the following seven barriers were identified: 1. lack of culturally relevant educational materials; 2. limited knowledge about the LFD; 3. inadequate formal training among dietitians; 4. lack of integration in multi-disciplinary care; 5. low health literacy of patients; 6. low compliance rate among patients, and 7. restrictions for certain populations. LFD implementation in Malaysia is not standardized as only experienced dietitians can provide dietary evidence-based advice. Lack of training and culturally specific resources are some of the main barriers that were identified to be limiting the implementation of the diet. Therefore, there is a need for training programs and resource development to support Malaysian dietitians in managing IBS patients.

03 Best practice for transition from paediatric complex pain care: A scoping review

Abstract Background Many adolescent and young adults (AYA) experiencing chronic pain often continue to have pain in adulthood and thus must make the transition from paediatric care to adult care. Persistent pain and disability due to chronic pain throughout young adulthood can disrupt the attainment of important developmental milestones at transition to adulthood that impact quality of life. Inadequate transition planning may be associated with poor health outcomes and increased health utilization. However, only few studies have described the specific transition protocol from paediatric to adult care that AYA with chronic pain must make. Objectives To improve understanding of transitional care needs during transition planning and after transition (quality of care), this paper will determine known barriers to successful transition from paediatric chronic pain care to adult care as well as factors associated with successful transition from paediatric multidisciplinary paediatric chronic pain care, identify patient care needs at transition from paediatric chronic pain care, and finally describe the best practice (existing frameworks) to support youth at transition from paediatric chronic pain care. Design/Methods This scoping review used previously published Arksey and O’Malley framework and followed the PRISMA guidelines. It sought to answer the following questions. What are the barriers to successful transition and what factors are associated with successful transition from paediatric chronic pain care to adult care? What are patient care needs at transition from paediatric chronic pain care? How can we best support youth at transition from interdisciplinary paediatric chronic pain care? A literature search was carried on Ovid Medline and 12 studies (11 research articles and 1 dissertation) published from 2015 to 2022 were included in the review, with only one theoretical transition framework that may be useful in the Canadian healthcare setting. Results In this scoping review, interpersonal, organizational, and systemic barriers and enablers for successful transition were identified. The most frequently identified barriers to successful transition include lack of self-efficacy, trust, communication, coordination of care between paediatric and adult care. A need of early transition, an individualized approach, fluid and dynamic transition process, and age-appropriate resources were identified as primary patient care needs during transition. Four frameworks supporting transitional care for AYA with chronic health conditions were identified. Conclusion Limited evidence suggests that there is lack of standardized transition protocol for clinical use. There is an urgent need for an evidence-based transition tools for clinical use for AYA with chronic pain.

18 Past and current care practices for neonates with complex medical needs: A scoping review to support clinical program evaluation

Abstract Background Neonates with complex medical needs (NCMN) are a rapidly growing patient population internationally. Although NCMN are a relatively small proportion of all Neonatal Intensive Care Unit (NICU) admissions, they are high healthcare utilizers. Since 2018, a dedicated Neonatal Complex Care Team (NCCT) has cared for NCMN at a large quaternary care center. The NCCT cares for NCMN in a dedicated, single-family room, patient area within the NICU. This model of care has yet to be evaluated for its potential impact on healthcare outcomes. Objectives The objective of the scoping review is to determine the breadth of available literature on the care practices for the management of NCMN and to collate the available evidence to define outcome measures to be used in a formal program evaluation. Design/Methods The review followed the PRISMA extension for scoping reviews and utilized resources from the Joanna Briggs Institute. The two databases that were utilized include Medline via OVID and CINAHL. The dates for included publications are January 1st 1993, until July 15th 2023. Only studies published in English and primary research were included. Two independent reviewers performed the initial title and abstract screening, and the full text review. The data extraction was completed by one independent reviewer. Results 102 articles were included in the title and abstract screen, and 12 were considered for full text review. Four articles were included. Interventions discussed in the included articles ranged from discharge conferences with patient’s caregivers, to the implementation of an entirely new model of care. Multidisciplinary health care teams appear to be integral to the in-hospital care and smooth discharge of NCMN. We identified that caregiver involvement and satisfaction are important to the discharge process as they are primarily responsible for their infant’s care after discharge, and so it is important that the specifics of care are communicated and taught effectively. The outcomes of interest identified as most useful for clinical program evaluation were length of stay and readmission rate. Additionally there was limited data reported on long-term health outcomes of this patient population. Conclusion This scoping review identified few articles that reported new models of care, a lack of consistent outcomes used in evaluating existing care models and overall a gap in research in this rapidly growing patient population. There is more work to be done to improve care of NCMN and our findings will be used in designing future studies that evaluate care models.

Barriers and facilitators of healthcare access for long COVID-19 patients in a universal healthcare system: qualitative evidence from Austria

BackgroundLong COVID-19 challenges health and social systems globally. International research finds major inequalities in prevalence and healthcare utilization as patients describe difficulties with accessing health care. In order to improve long-term outcomes it is vital to understand any underlying access barriers, for which relevant evidence on long COVID-19 is thus far lacking in a universal healthcare system like Austria. This study aims to comprehensively identify access barriers and facilitators faced by long COVID-19 patients in Austria and explore potential socioeconomic and demographic drivers in health and social care access.MethodsApplying an exploratory qualitative approach, we conducted semi-structured interviews with 15 experts including medical professionals and senior health officials as well as focus groups with 18 patients with confirmed long COVID-19 diagnosis reflecting varying participant characteristics (age, gender, urbanicity, occupation, education, insurance status) (July-Nov 2023). Data were analysed following a thematic framework approach, drawing on a comprehensive ‘access to health care’ model.ResultsBased on expert and patient experiences, several access barriers and facilitators emerged along all dimensions of the model. Main themes included scepticism and stigma by medical professionals, difficulties in finding knowledgeable doctors, limited specialist capacities in the ambulatory care sector, long waiting times for specialist care, and limited statutory health insurance coverage of treatments resulting in high out-of-pocket payments. Patients experienced constant self-organization of their patient pathway as stressful, emphasizing the need for multidisciplinary care and centralized coordination. Facilitators included supportive social environments, telemedicine, and informal information provided by a nationwide patient-led support group. Differences in patient experiences emerged, among others, as women and younger patients faced gender- and age-based stigmatization. Complementary health insurance reduced the financial strain, however, did not ease capacity constraints, which were particularly challenging for those living in rural areas.ConclusionsThe findings of this study indicate a call for action to improve the long COVID-19 situation in Austria by empowering both providers and patients via increased information offerings, strengthened interdisciplinary treatment structures and telemedicine offerings as well as research funding. Our insights on potentially relevant socioeconomic and demographic drivers in access barriers lay the necessary foundation for future quantitative inequality research.

Expanding the primary care workforce by integrating genetic counselors in multidisciplinary care teams.

Collectively, rare diseases are common, affecting approximately 8% of the population in Canada and the USA. Therefore, the majority of primary care (PC) clinicians will care for patients who are affected or at risk for a genetic disease. Considering the increasing ways in which genetics is being implemented into all areas of healthcare, one way to address these needs and expand the capacity of the PC workforce is through the integration of genetic counselors (GCs) into PC multidisciplinary teams. GCs are Masters-educated allied health professionals with specialized training in molecular genetics, communication, and short-term psychotherapeutic counseling. The current models of GCs in PC mimic other multidisciplinary models. Complex tasks related to genetics, such as pre- and post-test counseling, genetic test selection, and results interpretation, are conducted by GCs, which, in turn, allows physicians, nurse practitioners, and other PC providers to work at the top of their scope of practice. Quality genetics services provided by GCs improve clinical outcomes for patients and their families; the simultaneous provision of genetic education and psychological support by a GC is associated with an increase in patient knowledge, perceived personal control, decrease in distress, and can lead to positive health behavior changes, all of which are aligned with the goals of primary healthcare. With their extensive training in clinical care, medical communication, and psychotherapeutic counseling, integrating GCs into PC care teams will improve the care patients receive and allow PC clinicians to ensure their patients are at the forefront of the personalized medicine revolution.