Understanding Practical, Robust Implementation and Sustainability of Home-based Comprehensive Sexual Health Care: A Realist Review.

This review identifies which elements of home-based comprehensive sexual health care (home-based CSH) impacted which key populations, under which circumstances. A realist review of studies focused on home-based CSH with at least self-sampling or self-testing HIV and additional sexual health care (e.g., treatment, counseling). Peer-reviewed quantitative and qualitative literature from PubMed, Embase, Cochrane Register of Controlled Trials, and PsycINFO published between February 2012 and February 2023 was examined. The PRISM framework was used to systematically assess the reach of key populations, effectiveness of the intervention, and effects on the adoption, implementation, and maintenance within routine sexual health care. Of 730 uniquely identified records, 93 were selected for extraction. Of these studies, 60% reported actual interventions and 40% described the acceptability and feasibility. Studies were mainly based in Europe or North America and were mostly targeted to MSM (59%; 55/93) (R). Overall, self-sampling or self-testing was highly acceptable across key populations. The effectiveness of most studies was (expected) increased HIV testing. Adoption of the home-based CSH was acceptable for care providers if linkage to care was available, even though a minority of studies reported adoption by care providers and implementation fidelity of the intervention. Most studies suggested maintenance of home-based CSH complementary to clinic-based care. Context and mechanisms were identified which may enhance implementation and maintenance of home-based CSH. When providing the individual with a choice of testing, clear instructions, and tailored dissemination successful uptake of STI and HIV testing may increase. For implementers perceived care and treatment benefits for clients may increase their willingness to implement home-based CSH. Therefore, home-based CSH may determine more accessible sexual health care and increased uptake of STI and HIV testing among key populations.

Effects of the Mental Health Supporter Training Program on mental health-related public stigma among Japanese people: A pretest/posttest study.

Aim: The Mental Health Supporter Training Program is a national project conducted in Japan. This study aimed to determine the effects on mental health-related stigma, mental health literacy, and knowledge about mental health difficulties and support techniques among program participants. Methods: The target population was local residents of a wide range of generations in Japan. Outcomes were assessed at baseline (T1), immediately postintervention (T2), and at the 6-month follow-up (T3). A mixed model for repeated-measures conditional growth model analyses were employed to examine the effects of the intervention over time (T1, T2, T3). We also calculated effect sizes using Cohen's d. Results: The program had a significantly favorable pooled effect on the Japanese version of the Reported and Intended Behaviour Scale score after adjusting for covariates (reported behavior [t = 3.20, p = 0.001]; intended behavior [t = 8.04, p < 0.001]). However, when compared at each time point, only intended behavior from T1 to T2 showed a significant difference (t = 8.37, p < 0.001). Significant pooled effects were found for mental health literacy (knowledge: t = 19.85, p < 0.001; attitude: t = 15.02, p < 0.001), knowledge of mental health (t = 28.04, p < 0.001), and psychological distress (t = -2.41, p = 0.016). Conclusion: The results suggest that the program might be effective for improving intended, but not reported, behavior in the short term and for improving mental health literacy, knowledge of mental health, and psychological distress.

Enhancing the delivery of comprehensive care for people living with HIV in Canada: insights from citizen panels and a national stakeholder dialogue.

BACKGROUND: People living with human immunodeficiency virus (HIV) are living longer with health-related disability associated with ageing, including complex conditions. However, health systems in Canada have not adapted to meet these comprehensive care needs. METHODS: We convened three citizen panels and a national stakeholder dialogue. The panels were informed by a plain-language citizen brief that outlined data and evidence about the challenge/problem, elements of an approach for addressing it and implementation considerations. The national dialogue was informed by a more detailed version of the same brief that included a thematic analysis of the findings from the panels. RESULTS: The 31 citizen panel participants emphasized the need for more prevention, testing and social supports, increased public education to address stigma and access to more timely data to inform system changes. The 21 system leaders emphasized the need to enhance person-centred care and for implementing learning and improvement across provinces, territories and Indigenous communities. Citizens and system leaders highlighted that policy actions need to acknowledge that HIV remains unique among conditions faced by Canadians. CONCLUSIONS: Action will require a national learning collaborative to support spread and scale of successful prevention, care and support initiatives. Such a collaborative should be grounded in a rapid-learning and improvement approach that is anchored on the needs, perspectives and aspirations of people living with HIV; driven by timely data and evidence; supported by appropriate decision supports and aligned governance, financial and delivery arrangements; and enabled with a culture of and competencies for rapid learning and improvement.

Summary of evidence on comprehensive healthcare for chemotherapy-induced peripheral neuropathy in cancer patients.

OBJECTIVE: This paper aims to provide an evidence-based summary of the most effective strategies for comprehensive healthcare of chemotherapy-induced peripheral neuropathy (CIPN) in cancer patients. METHOD: Following the "6S" model, relevant evidence on CIPN management was collected from reputable evidence-based resource websites and databases nationally and internationally. The included articles were evaluated for methodological quality, and evidence was extracted using the Australian JBI Evidence-based Health Care Center's literature evaluation standard (2016 edition). RESULTS: A total of 60 articles were included in this study, comprising 2 guidelines, 5 expert consensus statements, and 53 systematic reviews. The findings of these articles were summarized across 7 dimensions, including risk factor screening, assessment, diagnosis, prevention, treatment, management, and health education, resulting in the identification of 42 relevant pieces of evidence. CONCLUSIONS: This study provides a comprehensive synthesis of evidence-based recommendations for managing CIPN in cancer patients, offering guidance for healthcare professionals engaged in clinical practice. However, when implementing these recommendations, it is crucial to consider the individual patient's clinical circumstances, preferences, and expert judgment, ensuring feasibility and applicability in real-world clinical settings.

Validation and Clinical Application of the Japanese Version of the Patient-Reported Experience Measures for Intermediate Care Services: A Cross-Sectional Study.

Older adult patients account for 70% of all hospitalized patients in Japan, and intermediate care based on patient-centered care (PCC) that ensures continuity and quality of care at the interface between home services and acute care services and restores patient's independence and confidence is necessary for them to continue living independently. At present, no concept of intermediate care is established in Japan, and the implementation of PCC has been delayed. Thus, in this study, a Japanese version of the intermediate care evaluation index (patient-reported experience measure (PREM)) was created on the basis of the original PREM developed in the UK, and data in wards with intermediate care functions in Japan were collected to confirm internal consistency and validity from 2020 to 2022. The Japanese version of PREM was found to have a factor structure with two potential factors. Given the clear correlation with the shared decision-making evaluation index, which is the pinnacle of PCC, the theoretical validity of the Japanese version of PREM, which is based on PCC as a theoretical basis, was confirmed.

Patient interest in the development of a center for Ehlers-Danlos syndrome/hypermobility spectrum disorder in the Chicagoland region.

BACKGROUND: The Ehlers-Danlos Syndromes (EDS) are a group of connective tissue disorders that are hereditary in nature and characterized by joint hypermobility and tissue fragility. The complex nature of this unique patient population requires multidisciplinary care, but appropriate centers for such care do not exist in large portions of the country. Need for more integrated services has been identified in Chicagoland, or Chicago and its suburbs. In order to explore and begin to address barriers to seeking appropriate care facing EDS patients in this region, we developed an online survey which we circulated through EDS social media groups for Chicagoland patients. RESULTS: Three hundred and nine unique respondents participated. We found that there exists a strong medical need for and interest in the development of a center in the region, and participants reported that, if made available to them, they would make extensive and regular use of such a facility. CONCLUSIONS: We conclude that the establishment of a collaborative medical center specializing in the diagnosis and treatment of EDS, Hypermobility Spectrum Disorder, and related disorders in the Chicagoland area would greatly benefit patients by providing comprehensive care, alleviate the burden on overworked healthcare providers, and contribute to the sustainability of medical facilities.

Supporting Life Adjustment in Patients With Lung Cancer Through a Comprehensive Care Program: Protocol for a Controlled Before-and-After Trial.

BACKGROUND: Lung cancer diagnosis affects an individual's quality of life as well as physical and emotional functioning. Information on survivorship care tends to be introduced at the end of treatment, but early intervention may affect posttreatment adjustment. However, to the best of our knowledge, no study has explored the effect of early information intervention on the return to work, family, and societal roles of lung cancer survivors. OBJECTIVE: We report the study protocol of a comprehensive care prehabilitation intervention designed to facilitate lung cancer survivors' psychological adjustment after treatment. METHODS: A comprehensive care program was developed based on a literature review and a qualitative study of patients with lung cancer and health professionals. The Lung Cancer Comprehensive Care Program consists of educational videos and follow-up visits by a family medicine physician. To prevent contamination, the control group received routine education, whereas the intervention group received routine care and intervention. Both groups completed questionnaires before surgery (T0) and at 1-month (T1), 6-month (T2), and 1-year (T3) follow-up visits after surgery. The primary outcome was survivors' psychological adjustment to cancer 6 months after pulmonary resection. RESULTS: The historical control group (n=441) was recruited from September 8, 2021, to April 20, 2022, and the intervention group (n=350) was recruited from April 22, 2022, to October 17, 2022. All statistical analyses will be performed upon completion of the study. CONCLUSIONS: This study examined the effectiveness of an intervention that provided general and tailored informational support to lung cancer survivors, ranging from before to the end of treatment. TRIAL REGISTRATION: ClinicalTrials.gov NCT05078918; https://clinicaltrials.gov/ct2/show/NCT05078918. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/54707.

Comprehensive Treatment for Pregnant and Parenting Women with Substance Use Disorders and Their Children: The UNC Horizons Story.

OBJECTIVES: To describe how the UNC Horizons program, a comprehensive women-centered program for pregnant and parenting women with substance use disorders, and its patient population have changed over time and summarize basic neonatal outcomes for infants born to women in treatment at Horizons. METHODS: Yearly Annual Reports from fiscal years of 1994 to 2017 were abstracted. Patient characteristics and infant outcomes compared to normative North Carolina data were examined. RESULTS: Highlights of findings include: The percentage of women for whom opioids were the primary substance of use increased from 0% in 1995-1996 to 62% in 2016-17, while cocaine decreased from 66 to 12%. Intravenous substance use history increased from 7% in 1994-1995 to 41% in 2016-2017. The number of women reporting a history of incarceration rose from 10-20% in the early years to 40%-50% beginning in 2007-2008. The proportion of women reporting a desire to hurt themselves rose from 20% in 2004-2005 to 40% in 2016-2017. Self-reported suicide attempt history remained consistent at 32% across years. While reporting of childhood physical abuse remained at 38% across years, reporting of sexual abuse and domestic violence trended upward. Horizons did not differ from North Carolina in the likelihood of patients giving birth prematurely [χ2(13) = 20.6,p = .082], or the likelihood of a patient giving birth to a low birthweight infant [χ2(13) = 14.7,p = .333]. CONCLUSIONS FOR PRACTICE: Breaking the cycle of addiction for women and children must focus on helping women with substance use problems develop a sense of hope that their lives can improve, and a sense of feeling safe and nurtured.

Systematic examinations of programs that provide treatment services to pregnant and parenting women with substance use disorders have typically been focused on a limited set of outcomes and have been cross-sectional in nature. The current paper presents a detailed examination of the patient populations over a 23-year period, with particular attention to the changes over time in the women served. The birth weight and prematurity of infants born to the women in this program were likewise examined over time, and in comparison to state-level data.

[Messages from the estates general on French internal medicine]. / Que retenir des états généraux de la médecine interne française ?

Internal medicine is a medical specialty that is often poorly understood by the general public and sometimes misidentified. In an era of increasing subspecialization and high technicality, it is characterized by a comprehensive approach centered on clinical evaluation. Unlike what is observed in most developed countries, where systemic autoimmune diseases are managed by organ specialists based on their mode of presentation, French internists are at the forefront for diagnosing and managing these diseases. Their multidisciplinary training gives them legitimacy to justify this role. Internists also play a crucial role in the management of patients requiring unplanned hospitalizations downstream from emergency departments and in connection with primary care. Internists primarily practice in a hospital setting, with a specific position in the French healthcare system aligned with the training frameworks of all medical specialties. To better define internal medicine, its role in care activities, as well as in education and research, internists organized a General Assembly of internal medicine that took place on September 28, 2023, in Paris. Structured around think tanks focusing on care, education, and research activities, the general assembly aimed to improve visibility on internal medicine and internists. This article recounts the discussions that animated this meeting and highlights the main ideas that emerged. These general assemblies constitute a foundational step and will be followed by a Consultation Conference in order to better identify and promote internal medicine and internists, regardless of their types and places of practice.

The marginalization index and its association with selected services within the comprehensive care offered to breast cancer patients.

PURPOSE: There is little information on the supportive care offered to breast cancer patients. We investigated the association between the marginalization index and selected services offered by health professionals. METHODS: We used data from a cross-sectional parent study performed in Mexico from 2007 to 2009. We analyzed data from 832 women between 35 and 69 years of age with a histopathological diagnosis of breast cancer. This study was performed in hospitals in 5 states. We used frequencies, measures of central tendency, and logistic regression. We used the svy package of STATA statistical software v17. RESULTS: Overall, 15.6% of the study population reported that health professionals offered them selected services. The offer of two or more selected services was greater among women living in states with a very high marginalization index (21.8%) than among those living in states with a very low marginalization index (13.8%). Among women living in states with high marginalization, the odds of receiving a selected service offer were 2.03 times higher than those living in states with low marginalization (Odds ratio (OR) = 2.03, 95% CI 1.08-3.83). For women in the highest tertile of the asset index, the odds of receiving a selected service offer were 2.7 times greater than the odds for women in the lowest tertile (OR = 2.66, 95% CI 1.03-6.88). CONCLUSION: The prevalence of comprehensive care offered to breast cancer patients is low in Mexico and varies according to the marginalization index and the asset index.

Mapping the Postpartum Experience Through Obstetric Patient Navigation for Low-Income Individuals.

Background: Although the postpartum period is an opportunity to address long-term health, fragmented care systems, inadequate attention to social needs, and a lack of structured transition to primary care threaten patient wellbeing, particularly for low-income individuals. Postpartum patient navigation is an emerging innovation to address these disparities. Methods: This mixed-methods analysis uses data from the first year of an ongoing randomized controlled trial to understand the needs of low-income postpartum individuals through 1 year of patient navigation. We designed standardized logs for navigators to record their services, tracking mode, content, intensity, and target of interactions. Navigators also completed semistructured interviews every 3 months regarding relationships with patients and care teams, care system gaps, and navigation process. Log data were categorized, quantified, and mapped temporally through 1 year postpartum. Qualitative data were analyzed using the constant comparative method. Results: Log data from 50 participants who received navigation revealed the most frequent needs related to health care access (45.4%), health and wellness (18.2%), patient-navigator relationship building (14.8%), parenting (13.6%), and social determinants of health (8.0%). Navigation activities included supporting physical and mental recovery, accomplishing health goals, connecting patients to primary and specialty care, preparing for health system utilization beyond navigation, and referring individuals to community resources. Participant needs fluctuated, yielding a dynamic timeline of the first postpartum year. Conclusion: Postpartum needs evolved throughout the year, requiring support from various teams. Navigation beyond the typical postpartum care window may be useful in mitigating health system barriers, and tracking patient needs may be useful in optimizing postpartum care. Clinical Trial Registration: Registered April 19, 2019, enrollment beginning January 21, 2020, NCT03922334, https://clinicaltrials.gov/ct2/show/NCT03922334.

Congenital Insensitivity to Pain with Anhidrosis: A Case Report.

Hereditary sensory and autonomic neuropathy type 4 (HSAN4), or congenital insensitivity to pain with anhidrosis (CIPA), is a rare autosomal recessive disorder caused by mutations in the NTRK1 gene, resulting in pain insensitivity, anhidrosis, and temperature dysregulation. This report focuses on oral manifestations in an 11-year-old girl with CIPA, highlighting the need for early intervention and comprehensive care. The patient had a history of recurrent oral injuries and an unexplained fever, with a confirmed HSAN4 diagnosis through genetic analysis. Clinical features included pain insensitivity, anhidrosis, and intellectual disability. Dental history revealed emergency care, suboptimal oral hygiene, early tooth loss, and infections. Extra-oral examination showed nail-biting and injuries, while intra-oral assessment revealed ulcers and scars. Radiographic evaluation indicated mandibular alveolar bone thinning and periapical lesions in the lower incisors. This case emphasizes the complex challenges of CIPA, including pain insensitivity, recurring fever episodes, and self-inflicted injuries. Early diagnosis and specific dental care are vital to prevent orofacial trauma, necessitating a proactive interdisciplinary approach for comprehensive care.

Factors affecting quality of life in adults with HIV: A local cross-sectional study.

Background: Understanding health-related quality of life (HRQOL) among people with HIV (PWH) can inform strategies to maintain or improve health and functioning. Most HRQOL research has focused on resource-rich settings, underrepresenting younger cohorts in low-resource settings. Objectives: To assess HRQOL and associated factors in PWH visiting two primary healthcare clinics in the Western Cape, South Africa. Method: A cross-sectional study included 48 PWH (58.3% women; mean age: 39.2 [10.3]). Health-related QOL was assessed using EQ-5D-5L descriptive domains, visual analogue scale (EQ-VAS), and index score (EQ-index). Mobility was assessed using clinical tests. Tobit regression determined associations. Results: Mean and median EQ-VAS scores were 88.14 (16.35) and 95.00. Mean and median EQ-index scores were 0.84 (0.10) and 0.90. PWH reported problems as pain/discomfort (35.4%), depression/anxiety (25.0%), mobility (22.9%), usual activities (18.7%) and self-care (12.5%) domains. Slow chair rise (p = 0.012), low income (p = 0.030), longer HIV duration (p = 0.009) and polypharmacy (p = 0.034) were associated with lower HRQOL. Antiretroviral therapy (ART) adherence was associated with higher HRQOL (p = 0.020). Conclusion: Despite high overall HRQOL, specific domains presented challenges to PWH. Health-related QOL was associated with chair rise repetitions, income, HIV duration, polypharmacy, and treatment adherence. Comprehensive care and contextualised interventions to address these through rehabilitation, including health promotion, are proposed strategies for future investigation. Clinical implications: Clinicians should be cognisant of potential physical and mental functioning problems, and factors related to drug therapy, socio-economic status and disease duration that may affect HRQOL even in seemingly unimpaired PWH.

Current Status and Challenges in Delivering Comprehensive Care for Patients with Hemophilia.

The importance of comprehensive care as a treatment strategy for patients with hemophilia is recognized worldwide. Comprehensive care entails addressing full spectrum of medical and psychological aspects impacting both patients and their families. The primary objective of comprehensive care for individuals with hemophilia is to enable them to lead their daily lives just as anyone else would. To achieve this goal, it is necessary to have a positive and collaborative approach across various healthcare disciplines. This extends beyond clinical specialists, encompassing pediatricians, hematologists, orthopedic surgeons, dental and oral surgeons, gynecologists, nurses, physical therapists, clinical psychologists, and other professionals from diverse fields. This review article discusses the current status and challenges associated with comprehensive care for patients with hemophilia. We categorize these challenges as follows: hemophilic arthritis, rehabilitation, oral care, transitioning from pediatric to adult care, addressing carrier issues, and providing psychological care. There is still substantial work to be undertaken in addressing these hurdles and advancing the quality of comprehensive care for hemophilia patients.

Holistic Approaches to Arrhythmia Management: Combining Medication, Ablation, and Device Interventions.

This narrative review investigates the severe health issue of arrhythmias, which affects millions of people worldwide. A multifaceted strategy incorporating medicine, catheter ablation, and advanced device interventions is necessary to manage these disorders effectively. Medication is the cornerstone, and as antiarrhythmic medications develop, their efficacy and side effects are reduced. Success depends on having individualized treatment strategies that consider patient profiles and arrhythmia type. Catheter ablation, a minimally invasive surgery that targets and removes faulty heart electrical circuits, has become a potent therapy when drugs are ineffective. Technological developments, including high-resolution mapping systems and customized catheters, improve precision. Pacemakers and implantable cardioverter-defibrillators (ICDs) are two examples of implantable cardiac devices essential to managing all types of arrhythmias. Pacemakers provide a regular heartbeat when the body's natural pacing mechanism fails. At the same time, ICDs, with cutting-edge algorithms, can identify and stop life-threatening arrhythmias and offer high-risk patients vital protection. As device technology advances, smaller, more durable devices become available, improving patient comfort and lowering the need for replacements. The seamless fusion of these three strategies is where holistic arrhythmia management shines. Even for difficult instances, customized combination therapy combining medicine, ablation, and device interventions offers complete solutions. Healthcare providers must collaborate for this integrated strategy to deliver personalized, efficient, and holistic care. In conclusion, the management of arrhythmias has developed into a dynamic, synergistic discipline where drugs, catheter ablation, and devices all work in concert to deliver comprehensive care. For those with arrhythmias, a patient-centered strategy that considers their particular patient features and best integrates different modalities can significantly enhance their quality of life. The effectiveness and accessibility of holistic arrhythmia management could be further improved because of ongoing developments in these fields, which is encouraging for patients and medical professionals.

What do medical students and their clinical preceptors understand by primary health care in South Africa? A qualitative study.

BACKGROUND: The definition of Primary Health Care (PHC) issued by the World Health Organisation in 1978 indicated that essential health care should be made accessible to individuals and their communities close to where they live and work. In 1992 Starfield articulated the four pillars of PHC: the patient's first contact with healthcare, comprehensive care, coordinated care and continuous care. Using this literature guidance, this study sought to explore what undergraduate medical students and their clinical preceptors understood by PHC in four South African medical schools. METHODS: A qualitative study using the phenomenological design was conducted among undergraduate medical students and their clinical preceptors. The setting was four medical schools in South Africa (Sefako Makgatho Health Sciences University, Walter Sisulu University and the University of KwaZulu-Natal and the Witwatersrand University). A total of 27 in-depth interviews were conducted among the clinical preceptors and 16 focus group discussions among the students who were in their clinical years of training (MBChB 4-6). Interviews were digitally recorded and transcribed verbatim, followed by thematic data analysis using the MAXQDA 2020 (Analytics Pro) software. RESULTS: Four themes were identified in which there were similarities between the students and their preceptors regarding their understanding of PHC: (1) PHC as the patient's first contact with the healthcare system; (2) comprehensive care; (3) coordination of care and (4) continuity of care. A further two themes were identified in which these two groups were not of similar understanding: (5) PHC as a level or an approach to healthcare and (6) the role of specialist clinical preceptors in PHC. CONCLUSIONS: Medical students and their clinical preceptors displayed an understanding of PHC in line with four pillars articulated by Starfield and the WHO definition of PHC. However, there remains areas of divergence, on which the medical schools should follow the guidance provided by the WHO and Starfield for a holistic understanding of PHC.

Holistic nursing care practice and associated factors among nurses in public hospitals of Wolaita zone, South Ethiopia.

BACKGROUND: Holistic nursing care is an approach to patient care that takes into account the physical, social, spiritual, and psychological needs of the patient. Providing holistic care has been found to be an effective way to prevent diseases and death, as well as improve the quality of healthcare provided to patients. However, despite its perceived benefits, many nurses lack experience with holistic care and only focus on patients' physical needs, treating them as biological machines while ignoring their spiritual, mental, and social needs. Therefore, this study aimed to assess the practice of holistic nursing care and its associated factors among nurses. METHODS: A hospital-based cross-sectional study was conducted among 422 sampled Nurses working in public hospitals in Wolaita Zone. Systematic random sampling was applied to select the study participants. A self-administered, pretested questionnaire was used to collect the data. The collected data were entered into Epi Data version 4.6 and analyzed using SPSS version 25. Binary and multivariable logistic regression analyses were used to identify factors associated with holistic nursing care practice. Statistical significance was declared at a p-value less than 0.05. The strength of the association was indicated by the AOR and 95% CI. RESULT: The study found that the overall practice of holistic nursing care was 21%. Nurses with a diploma in nursing (AOR: 0.28; 95% CI: 0.11, 0.71), nurses working in a hospital with no continuous in-service learning (AOR: 0.39; 95% CI: 0.20, 0.76), nurses with a poor relationship with patients (AOR: 0.31; 95% CI: 0.16, 0.58), and nurses with poor knowledge of holistic nursing care practice (AOR: 0.41; 95% CI: 0.21, 0.7) were factors associated with a lower likelihood of practicing holistic nursing care. CONCLUSION: This study found that the practice of holistic nursing care among nurses working in public hospitals in the Wolaita Zone was low. Level of education, the unit of work, continuous in-service learning, the nurse-patient relationship, and the knowledge of nurses were factors associated with holistic nursing care. The provision of in-service training and the creation of trusting, positive relationships were suggested to improve the practice of holistic nursing care.

Current challenges and new approaches to implementing optimal management of sickle cell disease in sub-Saharan Africa.

Sickle cell disease (SCD) is the most common life-threatening monogenic disorder in the world. The disease is highly prevalent in malaria endemic areas with over 75% of patients residing in Sub-Saharan Africa (SSA). It is estimated that, without proper care, up to 90% of children with SCD will not celebrate their fifth birthday. Early identification and enrolment into comprehensive care has been shown to reduce the morbidity and mortality related with SCD complications. However, due to resource constraints, the SSA is yet to implement universal newborn screening programs for SCD. Furthermore, care for patients with SCD in the region is hampered by the shortage of qualified healthcare workers, lack of guidelines for the clinical management of SCD, limited infrastructure for inpatient and outpatient care, and limited access to blood and disease modifying drugs such as Hydroxyurea which contribute to poor clinical outcomes. Curative options such as bone marrow transplant and gene therapy are expensive and not available in many SSA countries. In addressing these challenges, various initiatives are ongoing in SSA which aim to enhance awareness on SCD, improve patient identification and retention to care, harmonize the standards of care for SCD, improve the skills of healthcare workers and conduct research on pertinent areas in SCD in the SSA context. Fortifying these measures is paramount to improving the outcomes of SCD in SSA.

Pancreatic Adenocarcinoma: Real World Evidence of Care Delivery in AccessHope Data.

BACKGROUND: Pancreatic adenocarcinoma is an aggressive disease and the delivery of comprehensive care to individuals with this cancer is critical to achieve appropriate outcomes. The identification of gaps in care delivery facilitates the design of interventions to optimize care delivery and improve outcomes in this population. METHODS: AccessHope™ is a growing organization that connects oncology subspecialists with treating providers through contracts with self-insured employers. Data from 94 pancreatic adenocarcinoma cases (August 2019-December 2022) in the AccessHope dataset were used to describe gaps in care delivery. RESULTS: In all but 6% of cases, the subspecialist provided guideline-concordant recommendations anticipated to improve outcomes. Gaps in care were more pronounced in patients with non-metastatic pancreatic cancer. There was a significant deficiency in germline testing regardless of the stage, with only 59% of cases having completed testing. Only 20% of cases were receiving palliative care or other allied support services. There was no difference in observed care gaps between patients receiving care in the community setting vs. those receiving care in the academic setting. CONCLUSIONS: There are significant gaps in the care delivered to patients with pancreatic adenocarcinoma. A concurrent subspecialist review has the opportunity to identify and address these gaps in a timely manner.