Background
Sickle cell disease (SCD), the most common monogenic disorder, affects more than 300 000 births annually, with 44 000 in India. Although the clinical phenotype of SCD is considered to be ...milder in aboriginal populations in India, there is a paucity of data on outcomes. To determine the severity of SCD in this population, we studied mortality rates and causes of mortality in a longitudinal cohort of patients with SCD in a remote aboriginal community in India receiving community‐based comprehensive care.
Procedures
Causes of death were analyzed in this cohort from January 2008 to December 2018. Details were collected from hospital records and in case of deaths at home by utilizing the WHO verbal autopsy questionnaire.
Results
The cohort consisted of 157 patients belonging to the Paniya, Betta Kurumba, Kattunyakan, and Mullu Kurumba tribes. During the study period, there were 22 deaths, all from the Paniya tribe. Twelve deaths (54.5%) occurred in the hospital and the remaining at home (45.5%), reflecting a crude mortality rate of 140 per 1000 population. Twenty‐five percent of deaths occurred in the 6–18 age group. There were no deaths in the 0–5 age group. The median age of death was 25 years, which was 30 years less than in the non‐SCD aboriginal population. The leading causes of death were acute chest syndrome, anemia, and sepsis among the SCD patients and stroke and suicides in the non‐SCD aboriginal population.
Conclusion
SCD is a severe disease among the Gudalur Valley's aboriginal population with a significant risk of premature mortality.
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.
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.
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.
Over the last 2 decades, the introduction of targeted therapies and the advances in the detection of BCR::ABL1 oncogene have dramatically improved comprehensive care for patients with Chronic myeloid ...leukemia (CML). The once deadly malignancy has now transformed into a chronic disease with an overall patient survival approaching that of the age-matched general population. While excellent prognoses have been reported among CML patients in high-income countries, it is unfortunately not the same for those living in low and middle-income (LMIC) countries such as Tanzania. This disparity is largely contributed by barriers associated with the provision of comprehensive care including early diagnosis, access to treatment, and regular monitoring of the disease. In this review, we will share our experiences and lessons learned in setting up a network of comprehensive care for patients with CML in Tanzania.
Objective To investigate factors hindering the spread of assisted peritoneal dialysis (PD) to support elderly patients in Japan, a survey of PD acceptance at home nursing stations was administered. ...Method A questionnaire survey was conducted involving 616 home-visit nursing stations in Aichi Prefecture, 368 of which were registered with the Aichi Medical Association or Aichi Council of Home-Visit Nursing Stations. Results A total of 132 facilities were surveyed, for a collection rate of 35％. The breakdown was as follows：37 home nursing stations were accepting PD patients, 59 were considering accepting PD patients, and 20 were not considering accepting PD patients. A total of 20％ of the facilities were always involved in PD patient visits. Other facilities had only a few opportunities to see PD patients per year. The most common conditions for acceptance by visiting nurses were："medication management" and "emotional support," followed by "PD-bag exchange" and "exit site care". The most common considerations for acceptance were："preparation of APD cycler" and "monitoring the operation of APD equipment," such as preparation of APD equipment. Conclusion In order for home health care nurses, who are key personnel in ASSISTED PD, to be able to accept PD patients without anxiety, collaboration and multidisciplinary cooperation, such as joint visits and sharing of care methods with medical staff at PD treatment facilities, are required.
Given the Costa Rican reality of the increase in the elderly population, where there is an average of 7 out of 10 households with an elderly member, it is imperative to meet the demand for training ...for people dedicated to caring for the elderly. The Juan Pablo II University, based on a person-centered care model and with a gerontological approach, launches an academic offer of formal education in virtual modality (remote face-to-face), a technical program in comprehensive care for the elderly. 10-month program, which is made up of two basic columns: One, training for caregivers, in the aspects necessary to care with dignity and the techniques required to care for an older person; the second column, courses focused on the personal and professional development and the care of the caregiver. An innovative proposal in the country. In this story, the experience of this Technician in Integral Care of the elderly person will be shared.
Ante la realidad costarricense del aumento de la población adulta mayor según la cual hay un promedio de 7 de cada 10 hogares con un miembro adulto mayor, se hace imperativo atender la demanda de formación para personas dedicadas al cuido de personas mayores. La Universidad Juan Pablo II a partir de un modelo de atención centrada en la persona y con un enfoque gerontológico, lanza una oferta académica de educación formal en modalidad virtual (presencialidad remota), un programa Técnico en cuidado integral de la persona adulta mayor. Programa de 10 meses de duración que se compone de dos columnas bases: Una, la formación para personas cuidadoras, en los aspectos necesarios para cuidar con dignidad y las técnicas requeridas para atender a una persona adulta mayor; la segunda columna, cursos enfocados en el desarrollo personal, profesional y el cuidado del cuidador. Una propuesta innovadora en el país.
En este relato, se compartirá la experiencia de este Técnico en Cuidado integral de la persona adulta mayor.
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.
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.
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).
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.
•Health professionals offered two or more targeted services to a small fraction of women diagnosed with breast cancer.•An offer of two or more selected services was higher among women residing in locations with a very high marginalization index.•The service most commonly offered was psychological care.
Parkinson disease (PD) is a debilitating neurological condition that includes both motor symptoms and nonmotor symptoms (NMS). Psychiatric complaints comprise NMS and are collectively referred to as ...neuropsychiatric manifestations. Common findings include atypical depressive symptoms, anxiety, psychosis, impulse control disorder, deterioration of cognition, and sleep disturbances. Quality of life (QoL) of patients suffering from NMS is greatly impacted and many times can be more debilitating than motor symptoms of PD. We expand on knowledge gained from treatment models within a comprehensive care model that incorporates multidisciplinary specialists working alongside psychiatrists to treat PD. Insight into background, clinical presentations, and treatment options for patients suffering from neuropsychiatric manifestations of PD are discussed. Identifying symptoms early can help improve QoL, provide early symptom relief, and can assist tailoring treatment plans that limit neuropsychiatric manifestations.
Cerebral infarction is induced by cerebral artery occlusion, resulting in ischemia, hypoxia, necrosis of brain cells in the corresponding blood supply area, and then dysfunction. Health action ...process approach (HAPA) model emphasizes the proposal and practice of health behavior as a whole and uses self-monitoring and encouraging ultimately developed health behavior. The present study explores the effects of comprehensive nursing measures of HAPA model on neurotransmitters, self-care ability and clinical outcomes of cerebral infarction patients.
One hundred and ten patients with cerebral infarction diagnosed and treated in our hospital from July 2020 to February 2022 were included as the subjects. The subjects were randomly grouped as the control (55 patients) and the study group (55 patients) and received conventional nursing measures and additional comprehensive nursing measures of HAPA model, respectively. The patients were tested for changes in self-care ability, nerve damage myelin basic protein (MBP), S100B, glial fibrillary acidic protein (GFAP), neuron-specific enolase (NSE) and neurotransmitter indexes acid-soluble protein (Asp), neuropeptide Y (NPY), substance P (SP), glutamate (Glu), respectively. The patients were considered as the good prognosis group (47 cases) and poor prognosis group (63 cases) according to the prognosis after comprehensive care. The logistic regression model was used to analyze the risk factors affecting the poor prognosis of patients with cerebral infarction.
After nursing, China Stroke Scale (CSS) score, the Fugl Meyer Rating Scale (FMA) score and Barthel index were significantly higher in both groups than before nursing, and all indexes were significantly higher in the study group than in the control group (p< 0.05). The length of hospital stay was significantly shorter in the study group than in the control group (p< 0.05). Compared with before nursing, the health knowledge, self-care skills, self-responsibility and self-concept of two groups were strongly increased after nursing, and the study group had much higher indexes than the control group (p< 0.05). After nursing, the levels of MBP, S100B, GFAP, NSE, Asp, NPY, SP and Glu in both groups were largely decreased, and more significant decrease was found in the study group (p< 0.05). Age, body mass index (BMI), hypertension history, coronary heart disease history and National Institutes of Health Stroke Score (NIHSS) score after treatment were significantly different between the good and poor prognosis groups (p< 0.05). The prognosis of patients in the study group was 52.73%, which was significantly higher than 32.73% in the control group (p< 0.05). Age, hypertension history, and post-treatment NIHSS score were independent risk factors related to poor prognosis by logistic multiple regression analysis (p< 0.05).
Comprehensive care measures of HAPA model may be used with advantage to improve the self-care ability, reduce the degree of neurological damage, and improve neurological function in cerebral infarction patients. Age, hypertension history, and NIHSS score after treatment were all risk factors related to poor prognosis.
We characterize variation in total hip arthroplasty (THA) episode payments in the United States. Medicare population immediately preceding implementation of the comprehensive care for joint ...replacement (CJR) bundled care model and propose a model for ongoing evaluation of hospital performance.
We identified THA episodes in Medicare part A 2014-2016 (n = 366,380) and compared 90-day episode payments across years and geographic regions. We fit hierarchical models that regressed episode payments on patient-level fixed and region-level and hospital-level random effects. Random effects estimates were used to characterize risk-adjusted hospital cost performance. We ranked hospitals (n = 3218) in each region by their cost performance estimate and constructed 95% confidence intervals to visualize high-performing and low-performing hospitals.
Mean part A episode payments declined from 2014 to 2016 throughout the United States ($19,925-$17,775; P < .001), primarily attributable to decreased postacute care payments. Ninety-day readmission rates fell by a percentage point (from 7.9% to 6.8%; P < .001). We found significant variation in risk-adjusted episode payments, postacute care utilization, and readmission rates across regions, and ever greater variation at the hospital level.
Medicare part A payments decreased for THA episodes between 2014 and 2016. The time frame for this decrease is notable for preceding full implementation of CJR, thus suggesting a more universal embrace of value-based care principles before the start date of CJR. These decreases were primarily because of decreased postacute care utilization and possibly related to falling readmission rates. Yet, significant variation in hospital cost performance remains, even after risk adjustment.
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.
