Social Patient Care Research Articles

Chronic diseases in the context of integrated health and social care

The task of improving the quality of medical care for patients with chronic diseases is considered a priority for the healthcare system, which requires a personalized model of medical and social care focused on the needs of patients with chronic pathology. The article aims to conceptualize the continuum of interdisciplinary care for patients with chronic diseases in disease conditions. The levels of integrated medical and social care for patients with chronic diseases are determined, according to the authors, by the dynamics of the patients quality of life mediated by the relevant condition of the disease. This article presents the practice of multilevel integration of medical and social care for patients with chronic diseases in disease conditions. The authors believe that prospective studies of the content of integrated care related to the study of the optimal ratio of medical and social components of the continuum in disease conditions will help solve the complex problem of improving the quality of medical care for patients with chronic diseases.

Unsolved problems and unwanted decision-making in the last year of life: A qualitative analysis of comments from bereaved caregivers.

Patients in their last year of life, as well as their relatives, often feel that existent care structures of the healthcare system do not adequately address their individual needs and challenges. This study analyzes unmet needs in terms of unsolved problems and unwanted decision-making in the health and social care of patients in their last year of life from the perspective of bereaved caregivers. This qualitative study is based on free-text comments from informal caregivers of deceased patients collected as part of the Last-Year-of-Life-Study-Cologne (LYOL-C) using a postal survey. With qualitative content analysis, a category system with main and subcategories was developed in a multi-step process. Free-text commentaries and demographic data were collected from 240 bereaved caregivers. Particularly outside of hospice and palliative care services, study participants addressed the following unsolved problems: poor communication with medical and nursing staff, insufficient professional support for informal caregivers, inadequate psycho-social support for patients, and poor management of pain and other symptoms. Respondents often stated that their relative had to be cared for and die outside their own home, which the relative did not want. Our findings suggest the necessity for greater awareness of patients' and their relatives' needs in the last year of life. Addressing individual needs, integrating palliative and hospice care in acute hospitals and other healthcare structures, and identifying patients in their last year of life and their caregivers could help to achieve more targeted interventions and optimization of care.

Continued alcohol consumption and hepatic encephalopathy determine quality of life and psychosocial burden of caregivers in patients with liver cirrhosis

BackgroundPatients with liver cirrhosis suffer from significantly reduced health-related quality of life and are often dependent on support from caregivers. In this context, caregivers often suffer from impaired quality of life (QoL) as well as psychosocial burden (PB). The aim of the present study was to identify factors influencing QoL and PB of caregivers in order to improve the social care of patients and caregivers.MethodsIn this cross-sectional study, 106 patients with liver cirrhosis and their caregivers were included. (Health-related) QoL was surveyed in patients (CLDQ) and caregivers (SF-36) and PB was determined by Zarit Burden Interview.ResultsAlcohol related liver cirrhosis (55%) was the predominant etiology of liver cirrhosis and the median MELD of the cohort was 14. QoL did not differ between patients with and without alcohol-related liver cirrhosis (p = 0.6). In multivariable analysis, continued alcohol consumption (p = 0.020), a history of hepatic encephalopathy (HE) (p = 0.010), poorer QoL of patients (p = 0.030) and poorer QoL of caregivers (p = 0.005) were associated with a higher PB of caregivers. Factors independently associated with poorer QoL of caregivers were continued alcohol consumption (p = 0.003) and a higher PB of caregivers (p = 0.030).ConclusionCaregivers of patients with liver cirrhosis suffer from impaired QoL and PB, especially in case of continued alcohol consumption or the occurrence of HE.

Resurgence of Ebola virus in 2021 in Guinea suggests a new paradigm for outbreaks.

Seven years after the declaration of the first epidemic of Ebola virus disease in Guinea, the country faced a new outbreak-between 14 February and 19 June 2021-near the epicentre of the previous epidemic1,2. Here we use next-generation sequencing to generate complete or near-complete genomes of Zaire ebolavirus from samples obtained from 12 different patients. These genomes form a well-supported phylogenetic cluster with genomes from the previous outbreak, which indicates that the new outbreak was not the result of a new spillover event from an animal reservoir. The 2021 lineage shows considerably lower divergence than would be expected during sustained human-to-human transmission, which suggests a persistent infection with reduced replication or a period of latency. The resurgence of Zaire ebolavirus from humans five years after the end of the previous outbreak of Ebola virus disease reinforces the need for long-term medical and social care for patients who survive the disease, to reduce the risk of re-emergence and to prevent further stigmatization.

Quality of life in patients with schizophrenia

IntroductionSchizophrenia, with its high prevalence, chronic progression and social impact, is a major challenge for health professionals. For this reason it is important to assess the impact of this disease on these patients, mainly on their quality of life.ObjectivesTo study the quality of life in patients with schizophrenia and determine the factors correlated with it.MethodsA cross-sectional, descriptive and analytical study of 28 patients with schizophrenia followed up at the psychiatric consultation in Hédi Chaker University Hospital of Sfax. Data collection was performed using a sheet exploring socio-demographic and clinical data. We used the Quality of Life Scale (Q-LES-Q-SF).ResultsThe average age of our patients was 40.61±6.27 years. The sex ratio (M/F) was1.15. The socioeconomic level was low in 71.4%. The average number of relapses was 3.04±1.4. Follow-up and compliance were good in 28.6% of cases. The average number of hospitalizations was 3.04±1.4. The average of quality of life in patients with schizophrenia was 21±5.74. The quality of life was affected with age (p=0.023), with the high number of relapses and with a higher number of hospitalizations in psychiatric hospital (p=0.008). Quality of life was improved with regular follow-up and good adherence to the treatment (p=0.000).ConclusionsThe quality of life in mental disorders was impaired mainly in schizophrenics, hence the need to evaluate in a codified way the quality of life of our patients in order to raise awareness among general practitioners as well as psychiatrists to improve the therapeutic and social care of patients.

СОВРЕМЕННЫЕ АСПЕКТЫ ОРГАНИЗАЦИИ МЕДИЦИНСКОЙ ПОМОЩИ ПАЦИЕНТАМ С ЛЕЙКОПЛАКИЕЙ СЛИЗИСТОЙ ОБОЛОЧКИ РТА

Subject. At the present stage, the organization of medical care for patients with precancerous diseases of the oral mucosa is one of the most important tasks of the dental service. This is due to the fact that timely detection and treatment of patients at the early stages of the disease provide a long-term and persistent clinical effect and allows you to achieve satisfactory clinical results. The purpose of the review: the work contains a review of the literature of recent years with a detailed review of measures in the management of medical care for patients with keratosis of the oral mucosa. Methodology. The article deals with current issues about the key points of early detection and treatment of precancerous diseases of the oral mucosa. It is noted that approaches to solving the problems of medical and social care for patients with leukoplakia of the oral mucosa are not only in the field of medicine, but also in the social side of human activity. Attention is paid to the discussion of the use of the screening method for determining diseases of the oral mucosa. The issues of perspective development of issues of improvement of scientifically based and acceptable for dental institutions methods of conducting medical preventive examinations are highlighted. Measures to improve the detection of patients with hyperkeratosis of the oral mucosa, as well as to improve the results of treatment of identified patients, are due to the interaction of various practical health services and should be solved comprehensively from the standpoint of a single systematic approach. The necessity of conducting this study as a criterion for evaluating the system of organization of dental services for patients with keratosis is shown. Results and conclusions. The conducted research review allowed us to identify areas for improving the organization of dental care for patients with hyperkeratosis of the oral mucosa. The study of the results obtained should be taken into account when forming prevention programs, taking into account the implementation of the developed standards and recommendations.

Topical issues of medical and social assistance to elderly and senile citizens in the conditions of inpatient social service organizations

The article analyzes the current regulatory and legal framework for the organization of social services for the elderly and disabled in social service institutions on the territory of the Russian Federation. The article reflects the shortcomings of legal documents regarding the organization of work of such institutions to improve the quality and accessibility of social care for patients receiving social services in social service organizations. The assessment of staffing standards is given.

Chronic Spontaneous Urticaria and Type 1 Diabetes Mellitus-Does Quality of Life Impairment Always Reflect Health Danger?

Background and aims: Chronic spontaneous urticaria (CSU) and diabetes mellitus type 1 (T1DM) may compromise the quality of life (QoL). We decided to compare the QoL of T1DM patients to those suffering from CSU. Materials and methods: Sixty-six patients with well-controlled T1DM (male 52%) in the mean age of (SD) 36.3 (11.09) years and 51 patients with CSU (male 33%) in the mean age of (SD) 35.8 (8.53) years were enrolled in this observational study. All the participants completed a Short-Form 36 (SF-36) QoL. Results: The QoL related to social functioning was significantly worse among CSU patients. There were differences related to gender found in the group of patients with T1DM—where men tended to declare a better quality of life than women (p = 0.015)—especially in the area of energy/fatigue and pain. It appeared that due to physical and emotional problems occurring in married patients, the QoL is lower in T1DM group in comparison to the CSU one. Conclusions: The patients with CSU presented significantly worse social functioning compared to the ones with T1DM. This fact proves the QoL impairment level is not always related to the level of health danger. The differences in the QoL related to gender and marital status found among T1DM patients point to the necessity for further exploration in a larger group of patients. Due to the fact that optimal disease management should ensure patient’s good emotional well-being, there is a need for additional psychological and social care for patients from those two groups.

Meanings and dimensions of cancer by sick people - a structural analysis of social representations.

To describe the contents and structure of the social representation of cancer. A qualitative study based on the Theory of Social Representations, carried out in a High Complexity Care Unit in Oncology. Data collection included a socio-occupational and clinical characterization questionnaire and free evocations form from 100 cancer patients in chemotherapy treatment and in-depth interviews with 29 of them. The analysis was performed using EVOC software. One hundred (100) patients participated in the study. The social representation of cancer has the words normal, difficult disease, death and fear in its central nucleus. The apparent ambivalence between the continuity of life and its finitude as structuring meanings of this representation enables establishing an inferential hypothesis that relates normal disease to the possibility of treatment, control and cure of cancer, while the fear of death remains in the representational field linked to the disease, which has a difficult treatment to cope with. The social representations of cancer based on the presented interrelationships provide reflections which may contribute to increasing the individual and social care of patients with malignant neoplasm and their family in health services.

Interrupted time series analyses on the effect on integrated care among the older population

Abstract Background Current health and social care systems in most European countries, are highly fragmented into specialist services, and poorly designed to provide health and social care for patients with multiple health problems and social needs. As some groups of patients might have greater difficulties navigating in a fragmented and divided system than others, current system also risks increasing inequalities in access and use of health and social care services. The aim of this study is to investigate if a comprehensive integrated care system perform better than ‘standard care’ in regards to emergency department visits, hospitalization for ambulatory care sensitive conditions (ACSC), costs and re-admissions as well as increase equity in health care among older people. Methods This study is an intervention study based on a comparative interrupted time series design comparing data from Norrtälje, where an integrated care system was implemented in 2006, with other areas of Stockholm county with a standard care system. The time series consists of register data from 2000-2015, obtained from the Stockholm County Council’s administrative database of healthcare utilization and population data on socio-demographic characteristics from national registers. Preliminary results The preliminary results based on data from 2000-2011 suggest that the introduction of an integrated care system in Norrtälje did not affect the rate of hospitalization for ACSC, costs or rates of emergency department visits. When stratifying on income group we saw that the lowest income group did improve in some of the outcomes. Conclusions The integrated care system in Norrtälje seems to have no significant effect on the outcome measures included. Whether socioeconomic inequity was affected is still to be investigated further. Key messages In this study we used interrupted time series to investigate organisational changes in the health care sector. Introducing integrated care in Norrtälje seems to have little effect on register based outcome measures.

Process Cost Management of Alzheimer’s Disease

Summary: Determining the cost of healthcare and social care for patients is a crucial issue for many parties; therefore, both public and private payments play a decisive role in patient care. The article deals with the analysis of the possibilities of the simulation of costs related to Alzheimer’s disease. This disease is highly variable, and the cost items vary considerably. Therefore, it is necessary to use simulation methods. The results of simulation models can then be implemented in sophisticated methods working with activity costs. Findings: Models for health and social care are specific. No significant re-engineering is expected in this area, so the models must be unambiguous and easy to understand for all representatives involved. Modeling of business processes is thus a suitable means for analysis in this area. The process cost calculation is built on two simulation models. The first model is the Business Process Model and Notation (BPMN), the results of which are verified in the system dynamics model created in the stock and flow diagram. The simulations results give us appropriate values for calculating the total activity-based costs of AD. Applications: The practical part of this article deals with the identification of costs related to Alzheimer’s disease and their allocation concerning remedies. Based on this information, models for Alzheimer’s disease process cost management are developed. Results: The BPMN simulation was performed for 100 passes through a fixed-length phase process. The duration of each phase was set at 48, 108, and 40 months. Five simulations were set up, each Mini-Mental State Examination (MMSE) score set, which affected the passage through the process. Software Stella Professional was used for simulations for constant MMSE score values for the home and facility options. The values are as follows: MMSE 5 = 1331 . 26 ( 1627 . 72 ); MMSE 15 = 1202 . 72 ( 1102 . 02 ); MMSE 25 = 1051 . 24 ( 848 . 91 ). Conclusions: Both AD models created in this article produce comparable results, although each of them works on a different principle. The results are based on the selection of original data, and at the same time, these models point to the processes and subprocesses that lead to the costs. The description, specifications, and possible values of partial costs are crucial knowledge for persons in the management functions of public administration and self-government in the area of finance and management not in the field of specific diseases.

Peculiarities of the organization and accessibility of ophthalmological assistance to the population of the Voronezh area taking into account the data on incidence and causal factors

Purpose of the study was to develop methods for predicting and optimizing the mechanisms for providing ophthalmological assistance to the population of the Voronezh Region based on a statistical analysis of the relationship between indicators of the state of ophthalmic health of the population, quality and accessibility of medical care.Materials and methods. The data on ophthalmological morbidity, resources of the ophthalmological service, outpatient and inpatient care provided to patients with ophthalmopathology were analyzed.Results. The article presents the results of the analysis of the main indicators of the activity of the ophthalmological service of the Voronezh region, based on the data of regional sectoral statistics of the Voronezh region in recent years. The problems of the personnel resource of the ophthalmological service, the effectiveness of the use of hospital beds, as well as problems of an administrative nature are discussed. On the basis of a systematic analysis of the incidence of the organ of vision, the prevalence and organization of medical care to the population, criteria are proposed for a quantitative and qualitative assessment of risk factors for the development of a pathology of the organ of sight. Based on the structural analysis of ophthalmologic morbidity, a complex of nonlinear prognostic models for the interaction of medical and social risk factors of ophthalmopathology with clinically established diseases of the organ of vision has been developed and tested. The developed regression model allowed us to separate the indicators by priority and to highlight the most significant ones. A logical prognostic model of dependence on disability based on existing risk factors has been formed.Conclusions. The clinical and epidemiological analysis helped to develop a regional target program to improve eye care for the population of the region and to outline the main measures to optimize the organization of eye care to the population of the Voronezh region in order to increase its availability and quality. Based on the results obtained, practical recommendations have been developed for improving medical and social care for patients with diseases of the organ of vision, taking into account the possibility of preventive measures in the early stages, to prevent the development of complications.

The organization of medical social care of patients with chronic cardiac insufficiency: the literature review

The organization of medical social care of patients with chronic cardiac insufficiency is focused on improving life of these patients through comprehensive interaction of all levels of medical care support of population. The organization of Schools of Health on the level of out-patient medical care specifically for patients with chronic cardiac insufficiency allows to extend the period of high-quality compensation of pathological condition.

The economic burden of stroke care in England, Wales and Northern Ireland: Using a national stroke register to estimate and report patient-level health economic outcomes in stroke.

IntroductionStroke registries are used in many settings to measure stroke treatment and outcomes, but rarely include data on health economic outcomes. We aimed to extend the Sentinel Stroke National Audit Programme registry of England, Wales and Northern Ireland to derive and report patient-level estimates of the cost of stroke care.MethodsAn individual patient simulation model was built to estimate health and social care costs at one and five years after stroke, and the cost-benefits of thrombolysis and early supported discharge. Costs were stratified according to age, sex, stroke type (ischaemic or primary intracerebral haemorrhage) and stroke severity. The results were illustrated using data on all patients with stroke included in Sentinel Stroke National Audit Programme from April 2015 to March 2016 (n = 84,184).ResultsThe total cost of health and social care for patients with acute stroke each year in England, Wales and Northern Ireland was £3.60 billion in the first five years after admission (mean per patient cost: £46,039). There was fivefold variation in the magnitude of costs between patients, ranging from £19,101 to £107,336. Costs increased with older age, increasing stroke severity and intracerebral hemorrhage stroke. Increasing the proportion of eligible patients receiving thrombolysis or early supported discharge was estimated to save health and social care costs by five years after stroke.DiscussionThe cost of stroke care is large and varies widely between patients. Increasing the proportion of eligible patients receiving thrombolysis or early supported discharge could contribute to reducing the financial burden of stroke.ConclusionExtending stroke registers to report individualised data on costs may enhance their potential to support quality improvement and research.

CLINICAL AND EPIDEMIOLOGICAL ASPECTS OF EPILEPSY IN CHILDREN AND ADOLESCENTS LIVING IN KRASNOYARSK REGION

The high prevalence of epilepsy in the pediatric population, significant cognitive, psychological and social consequences of this disease determine the problem urgency and the need for research. Previously there were no clinical-epidemiological study of epilepsy in the pediatric population in the Krasnoyarsk region (KR). This study estimates prevalence of epilepsy among children and adolescents in the KR, specifies gender and age variations of the disease onset, analyzes epileptic syndromes structure. The study included 1032 patients aged 0 to 17 years with epilepsy. General and primary morbidity in KR within the last 3 years was at the same level: in 2012 – 5,9 and 1,4, respectively, in 2013 – 5,65 and 1,3, in 2014 – 5,96 and 1,5 per 1000 children; in 2012 – 7,3 and 1,4, respectively, in 2013 – 7,3 and 1,5, in 2014 – 7,9 and 1,3 per 1000 adolescents. These parameters are greater than those in the Siberian Federal District and the Russian Federation; boys are more likely to suffer from epilepsy (54%) than girls (46%). The epilepsy onset occurs mainly at age from 0 to 1 year (26%) and 4–6 years (24%), significantly more rare manifestation occurs in adolescence (4%). In the structure of epilepsy syndromes prevail symptomatic focal (41%) and cryptogenic focal epilepsy (28%); third and fourth place take idiopathic focal epilepsy (18%) and idiopathic generalized epilepsy (10%) respectively; less numerous group is epileptic encephalopathy (3%). Study results allow to discuss the strategy of dispensary observation of patients with epilepsy, to plan surveys financing and drug supply and organization of medical and social care for patients with epilepsy and their families.

Analyse lexicale de la qualité de vie au travail des psychiatres à l'hôpital

A qualitative study was conducted in 2013 with hospital psychiatrists working in two psychiatric hospitals of different regions in order to document the quality of work life of public hospital psychiatrists. Semi-guided interviews were conducted with psychiatrists using an interview guide. Physicians were randomized according to health institution, age, gender and adult or paediatric psychiatry speciality. Data were analysed with the Alceste software and interpreted. Sixteen psychiatrists were interviewed. Four themes, composed of sub-themes, were highlighted. The first them concerned medical and social patient care, with the child's social and family environment, structural constraints and interactions with the care network. The second them concerned quality of care with the training of healthcare workers and the relational dimension. The third them concerned working in the public hospital system with the role of the "physician-administrator", loss of the meaning of work and job satisfaction. The last theme refers to the specificity of working in psychiatry with forensic aspects and violence issues. This study suggests that psychiatrists are globally satisfied with their jobs. The main factors to be improved are working time organization to allow more time to listen to the patient, interprofessional exchanges and paramedical staff training. These data should be assessed by means of a quantitative study.

Abstract P3-09-07: Construction of two quality of life questionnaires from young breast cancer patients and their partner

Abstract Background : The quality of life of couples which one of the members is affected by a cancerous pathology at a relatively young age is important to evaluate in global care. No questionnaire specifically addresses some thematic proper to young women (ex education, desire for a child(s), couple relationship), problems which are yet important for young women suffering from breast cancer. Besides, no questionnaire evaluates the partner's quality of life in this particular context, even if he is frequently the first source of support for the woman (Vanlemmens et al., 2012). Objectives : The main objective was to create a particular and specific tool for measuring the impact of breast cancer on the quality of life of young women (< 45 years of age) with non-metastatic disease and the quality of life of their partners. This work presents the psychometric validation of two questionnaires for patient and partner consisted of items comparable to the semantic level. Methods: We followed the different steps to construct a quality of life tool. After preliminary non-directive interviews and identification of relevant items, we administered the questionnaires on a wide sample of 546 young breast cancer patients and 497 partners. Psychometric testing assessed the hypothesized scale structure based on an examination of item-scale correlation, scale reliability by testing for internal consistency using Cronbach's alpha coefficient, construct validity with inter-scale correlations. Results : Items analyses indicate a good internal consistency of both questionnaires (superior to .75). This questionnaire includes 37 items. The factorial structure highlights 8 factors : 1) management of children and of everyday life, 2) negative affectivity and apprehension about future, 3) feeling of couple cohesion, 4) financial difficulties, 5) body image and sexual life, 6) deterioration with close relations, 7) sharing and support of close relations, and 8) management of the professional life..This structure explains respectively 56% for the patients and 58% for the partners of the total variance. As expected, convergent validity showed strong correlations with Kalicou scales and quality of life measures (QLQC-30 and QLQBR-23). Conclusions: Overall psychometric results for the 2 Kalicou questionnaires confirmed them as valid questionnaires for breast cancer patients and partners. This study will allow the clinicians to have a measurement tool for subjective real-life experience of young breast cancer women and their partner. These questionnaires will also allow comparisons according to the stage and study the interactions of couple. This tool should help to identify modifications of the subjective quality of life. The objective is to improve the medical, psychological and social care for patients and their partner, with a systemic, dynamic approach. Citation Information: Cancer Res 2013;73(24 Suppl): Abstract nr P3-09-07.

Immunotherapy Targeting Tau and Amyloid Aβ Pathology in AD Animal Models

Immunotherapy Targeting Tau and Amyloid Aβ Pathology in AD Animal Models

The cost associated with disease-related malnutrition in Ireland

The present study aimed to establish the annual public expenditure arising from the health and social care of patients with diet-related malnutrition (DRM) in the Republic of Ireland. Costs were calculated by (i) estimating the prevalence of DRM in health-care settings derived from age-standardised comparisons between available Irish data and large-scale UK surveys and (ii) applying relevant costs from official sources to estimates of health-care utilisation by adults with DRM. No attempt has been made to estimate separately the costs of DRM and any associated disease, since each can be a cause or consequence of the other. The methods used are adapted from an evaluation of the cost of malnutrition in the UK by the British Association for Parenteral and Enteral Nutrition (2009). Settings Hospitals, nursing homes, out-patient clinics, primary-care clinics and home care. All adult patients receiving hospital in-patient, out-patient or specified community health-care services. The annual public health and social care cost associated with adult malnourished patients in Ireland is estimated at over €1.4 billion, representing 10 % of the health-care budget. Most of this cost arises in acute hospital or residential care settings (i.e. 70 %), with nutritional support estimated to account for <3 % of spend. The cost associated with the care of patients with DRM is substantial and may rise as the proportion of older people within the population increases, a group at increased risk of DRM. Despite growing pressure on health-care budgets, little attention has been focused on the economic burden associated with DRM in Ireland or the potential for savings arising from improved detection and treatment of those at risk.

Establishing a new service role in tuberculosis care: the tuberculosis link worker

This paper is a report of a study to develop a social outreach model of care, including the role of a link worker in developing collaborative care pathways, for marginalized groups with tuberculosis. Social risk factors such as homelessness and substance misuse are associated with poor treatment outcomes. Models of interprofessional practice to address the health and social care of patients are needed to improve outcomes. A process evaluation involving a prospective cohort study of 100 patients and interviews with eight agencies involved in their care was conducted in London between January 2003 and April 2005. Outcome measures included a profile of patient need to guide service development; referrals to care providers; goal attainment; social improvement and treatment outcomes; and agencies' views on the benefits of link working. The median age of the sample was 32.4 years and 62% were males. Reasons for referral to the link worker included housing need (56%); welfare benefits (42%); immigration (29%) and clinical management issues (28%). One-third of the patients were referred to other agencies. Goals, as agreed in the care plan, were attained totally or partially for 88% (59/67) of patients and 78% of patients successfully completed treatment. Barriers to attaining goals included service criteria which excluded some groups of patients and, in some cases, a patient's inability to follow a course of action. Link workers can mitigate some of the social risk factors that complicate the treatment of tuberculosis by enabling integrated health and social care.