Disease-specific Care Research Articles

Attitudes of nurses and physicians working in hard-to-heal wound management towards person-centred care.

Person-centred care (PCC) is an important approach as it positively affects disease management. Guiding studies are needed on the use and development of PCC in hard-to-heal (chronic) wound management. This study aimed to determine attitudes and approaches of nurses and physicians working in hard-to-heal wound management towards PCC, and obtain their views and suggestions for its scope and improvement. Participants of this descriptive survey study consisted of nurses and physicians responsible for hard-to-heal wound care and treatment in healthcare institutions at all levels in Turkey. Data were collected through a structured online survey shared with members of professional associations via social media platforms between March-November 2020. Descriptive statistics and qualitative inductive content analysis were used to analyse data. Participants (n=418) included physicians (84.2%) and nurses (15.8%). Mean participant-graded their person-centred behaviour level was 8.18±1.80 (out of 10 points). The majority of participants reported that they informed patients about care, treatment processes and options (87.3%) as well as including them in the decision-making process (74.6%). Responses of the participants regarding the scope of PCC were classified into five main categories, the most prominent being: 'individual', 'care', 'professional development' and healthcare system'. Suggestions for the improvement of PCC were classified into seven main categories, with 'personalised care', 'disease-specific care', 'continued training of healthcare professionals should be ensured' and 'home care system should be developed for the continuity of care' among the prominent subcategories. The findings of this study suggests that education on PCC is an important approach. Institutional protocols and guidelines can support person-centred hard-to-heal wound management. In this study, the level of person-centred behaviour of the participants was determined to be good. Although the results of the study cannot be generalised to all health professionals-the majority of the participants were physicians-it is recommended to develop and disseminate the PCC model in hard-to-heal wound management using the findings.

Frailty as a mediator of postoperative delirium in older adults undergoing orthopedic surgery: A causal mediation analysis

BackgroundPostoperative delirium has a high prevalence in hospitalized older adults. Frail older adults have an increased risk for developing it. Preoperative pain—a common symptom in older adults with orthopedic conditions—shows a connection with frailty through an inflammatory process. However, an association among preoperative pain, frailty, and postoperative delirium remains unexplored among older adults undergoing orthopedic surgery. ObjectivesTo examine the magnitude, direction, and mediation effect of frailty on the association between preoperative pain and postoperative delirium among older adults undergoing orthopedic surgery. DesignA secondary analysis of a prospective cohort study. Setting and participantsA cohort of 200 older adults (60 years and older) who underwent major orthopedic surgery at a university hospital in Thailand was recruited for the study. MethodsParticipants responded to the Demographic and Health Information Form, the Reported Edmonton Frailty Scale-Thai version, and the Thai version of the 4 A's test. Analyses were conducted using a causal mediation analysis with 95 % confidence intervals. ResultsWe found that 12.5 % of participants developed postoperative delirium. For the direct paths associated with postoperative delirium, statistically significant effects were observed for frailty, preoperative pain, and comorbidity. Considering frailty as a mediator of postoperative delirium, a significant positive indirect effect was identified from preoperative pain. Controlling for age and comorbidities, frailty mediated the association between preoperative pain and postoperative delirium in a statistically significant manner; the average direct effect was 0.014 (95 % confidence interval: 0.008–0.020), the average causal mediating effect was 0.002 (95 % confidence interval: 0.000–0.010), the total effects was 0.017 (95 % confidence interval: 0.010–0.020), and the probability mediation accounted for 14 % (95 % confidence interval: 0.031–0.300). ConclusionIntegrating the concept of age-related decline and frailty assessment may offer opportunities to provide disease-specific care and strengthen precision perioperative care, which ultimately enhance quality of life in older adults undergoing orthopedic surgery.

A Reliable Medical Team for Dementia Care - The Experience Sharing of Disease Specific Care – Dementia Certification Program

<p>臺灣即將邁入超高齡社會，罹患失智症的人口數快速上升。失智症合併精神行為症狀及其導致的失能經常帶給照顧者極大的負荷，相關的醫療與長期照護議題至關重要。為了提升失智症照護品質，本機構參與醫策會所主辦失智症照護品質認證。準備認證期間，雖面臨許多挑戰，但團隊合力一一克服，最關鍵的因素是跨專業共同合作及良好溝通機制。依照醫策會所提供照護認證指引，本機構組建全面照護的全人醫療團隊。「全家」照護藉由醫病共享決策，給予照顧者必要的支持和諮詢，「全隊」照護由各種醫療專業職類共同合作，透過個案管理，提供極輕度以至末期失智症的「全程」照護，「全社區」照護則是強化團隊與公部門和在地失智症據點的聯繫網絡。確立標準照護流程與持續監測品質指標是認證後重要收穫，同時也彰顯了疾病認證的價值，團隊以此經驗分享予所有努力提升失智症照護品質的專業人員。</p> <p> </p><p>Taiwan is on the verge of becoming a super-aged society, with the number of people suffering from dementia rapidly increasing. Disability, behavioral and psychological symptoms caused by dementia impose a heavy burden on caregivers. The medical and long-term care of dementia is crucial in Taiwan. To optimize the quality of care, our hospital participated in the disease specific care – dementia certification program. During the process of certification, interdisciplinary collaboration is the most important. Following the guidelines from the Joint Commission of Taiwan, we established a team that features extensive holistic dementia care. We care “whole family”, providing necessary support to caregivers of patients with dementia, and counseling through shared decision making. We offer “whole team” care from different healthcare professionals. Through case management, patients’ conditions are followed regularly from the very mild stage to the end stage as “whole course” care. We built a strong connection with public agencies and local dementia care stations to create a “whole community” network. The establishment of consistent care processes and indicators to assess the quality of care marks the value of care certification program. The experience is shared with all professionals who exert efforts to improve dementia care.</p> <p> </p>

Exemplary Practices in Kidney Care: Sharing the Experience of " Disease Care Certification"

<p>2019年8月，本院腎臟團隊首次參與醫策會「腎臟病照護品質認證」，在委員查核下通過認證。近三年來，本院透過外部審核和交流，不斷增強自身實力，凝聚成員共識，進行腎臟照護標準化。以「病人為中心」執行醫療服務，促進跨領域合作，拓展研究領域。本團隊亦致力於品質改進和減少異常發生，建立新透析中心積極應對COVID-19及其他嶄新挑戰。在數位轉型過程中，本院更引進電子病歷智慧輔助系統，利用One System整合平台提升照護效率。同時，針對末期腎病(Pre-ESRD)5期病人，提前啟動醫病共享決策(SDM)，成立「愛腎家族」群組，強調醫療團隊成員和病人之間的合作。在高品質連續性照護基礎上，為急性腎損傷、慢性腎臟病、和需要透析的病人建立全面性的照護機制。</p> <p> </p><p>In August 2019, our hospital’s renal team participated for the first time in the Disease-Specific Care Kidney Disease certification program and achieved certification from the Joint Commission of Taiwan. Over the preceding three years, this team has consistently strengthened itself through external audits and exchanges, fostering consensus among its members and achieving standardization in renal care. Focusing on patient-centered care, the team’s main goals are to enhance core medical services, promote cross-disciplinary integration, and expand research areas. Our team is also dedicated to improving quality of care and mitigate anomalies. Furthermore, a new dialysis center was established to proactively respond to COVID-19 and other emerging challenges. During the digital transformation process, our hospital introduced an intelligent electronic medical record assistance system and utilized the One System integration platform to enhance care efficiency. For patients with stage 5 pre-end-stage renal disease, we proposed early shared decision-making standards, established a “Love Kidney Family” group, and emphasized the importance of collaboration between healthcare providers and patients. These initiatives were aimed at developing a foundation for offering comprehensive, high-quality care for patients with acute kidney injury, chronic kidney disease, and those requiring dialysis.</p> <p> </p>

Navigation needs in peritoneal surface malignancy as perceived by patients, caregivers and providers

BackgroundOncology navigation programs offer information and assistance to patients diagnosed with cancer and have evolved significantly along disease-specific care pathways. However, there is limited information on how to prioritize navigation services to meet the unique and complex needs of patients with peritoneal surface malignancies (PSMs). To define the navigation needs of PSM patients, we conducted a survey-based study to quantify the relative importance of various cancer-related stressors as perceived by patients, caregivers, and providers. MethodsA questionnaire was administered to PSM patients or caregivers and providers involved in the care of PSM patients, and the assessed measures of disease or treatment-related stress were compared among subgroups consisting of patients and caregivers vs. providers. ResultsOf the 72 PSM patients and caregivers surveyed, 93.1 % identified stressors related to receiving treatment to be somewhat or extremely challenging. Relative to patients/caregivers, providers tended to significantly over-prioritize the navigation domains of family care, transportation, long-distance travel, financial, insurance, work-related, and legal stress. Our survey data illustrates gaps between the experience of stressors among PSM patients/caregivers and the perceptions of providers. ConclusionsPSM programs should align resources with the navigation needs as experienced by patients and caregivers, while recognizing that providers tend to emphasize logistical considerations over cancer-related emotional distress. PSM-specific navigation pathways could improve the experience and satisfaction level of patients undergoing treatment for this complex condition. SynopsisThe authors report results of a survey provided to peritoneal surface malignancy patients, caregivers and providers. This analysis illustrates gaps between how patients and caregivers experience navigation needs and how providers perceive those needs.

Exploring the lived experiences of individuals with Parkinson’s disease and their relatives: insights into care provision experiences, disease management support, self-management strategies, and future needs in Germany (qualitative study)

BackgroundParkinson’s disease (PD) significantly impacts the health-related quality of life of affected individuals and their relatives. In order to support the affected individuals and their families in coping with PD, it is essential to offer comprehensive information about their experiences. A comprehensive understanding of their lived experiences with the disease, the healthcare system, applied self-management strategies and their needs is considered crucial for developing a PD support program. Therefore, we aimed to explore the lived experiences and support needs of individuals with PD and their relatives in Germany.MethodsThis non-interventional, qualitative study conducted an explorative status quo and needs assessment. It generated knowledge through semi-structured focus groups and interviews with individuals with PD at various disease stages and their relatives. The interviews were digitally recorded, transcribed verbatim, and analysed using content analysis.ResultsFifty-two individuals with PD and 29 relatives participated in eight focus groups and 13 paired and 13 individual interviews. Four themes with corresponding subthemes emerged: (1) experiences, revealing individuals’ experiences around their diagnosis and with disease-specific care provision; (2) management support offers, clarifying who provides support and the type of support offered; (3) self-management, including comprehensibility, meaningfulness and manageability; and (4) future needs, differentiating between deficits and needs. Most participants expressed a sense of abandonment when obtaining self-management strategies and mastering their lives with PD, often referred to as ‘life 2.0’. They identified the lack of structured and adequate provision of information, system orientation and social awareness.ConclusionsIn Germany, there is an urgent need for a comprehensive PD care program that addresses the needs of individuals with PD and their relatives from the start of their care trajectory. It could assist individuals in gaining a comprehensive understanding of the disease, obtaining self-management strategies, building a support network, and becoming experts in self-managing their disease. Moreover, it may positively influence their care trajectory and reduce burdens, such as overburdening, fear of progression, and health anxiety.Trial RegistrationGerman Clinical Studies Register (https://www.drks.de/DRKS00030090, No. DRKS00030090, Date of registration: 15.12.2022).

Network of doctors for multimorbidity and diabetes — the NOMAD intervention: protocol for feasibility trial of multidisciplinary team conferences for people with diabetes and multimorbidity

BackgroundThe prevalence of diabetes and coexisting multimorbidity rises worldwide. Treatment of this patient group can be complex. Providing an evidence-based, coherent, and patient-centred treatment of patients with multimorbidity poses a challenge in healthcare systems, which are typically designed to deliver disease-specific care. We propose an intervention comprising multidisciplinary team conferences (MDTs) to address this issue. The MDT consists of medical specialists in five different specialities meeting to discuss multimorbid diabetes patients. This protocol describes a feasibility test of MDTs designed to coordinate care and improve quality of life for people with diabetes and multimorbidity.MethodsA mixed-methods one-arm feasibility test of the MDT. Feasibility will be assessed through prospectively collected data. We will explore patient perspectives through patient-reported outcomes (PROs) and assess the feasibility of electronic questionnaires. Feasibility outcomes are recruitment, PRO completion, technical difficulties, impact of MDT, and doctor preparation time. During 17 months, up to 112 participants will be recruited. We will report results narratively and by the use of descriptive statistics. The collected data will form the basis for a future large-scale randomised trial.DiscussionA multidisciplinary approach focusing on better management of diabetic patients suffering from multimorbidity may improve functional status, quality of life, and health outcomes. Multimorbidity and diabetes are highly prevalent in our healthcare system, but we lack a solid evidence-based approach to patient-centred care for these patients. This study represents the initial steps towards building such evidence. The concept can be efficiency tested in a randomised setting, if found feasible to intervention providers and receivers. If not, we will have gained experience on how to manage diabetes and multimorbidity as well as organisational aspects, which together may generate hypotheses for research on how to handle multimorbidity in the future.Administrative informationProtocol version: 01Trial registrationNCT05913726 — registration date: 21 June 2023

Improving Medication Management for Inpatients with a Secondary Diagnosis of Parkinson Disease.

Patients who have Parkinson disease require individualized medication regimens to optimize care. A review of the medication management of patients admitted to a tertiary care hospital with a secondary diagnosis of Parkinson disease found significant departures from the patients' home regimen. Medication regimens are often altered by health care teams unfamiliar with Parkinson disease-specific care in order to conform to standard hospital medication orders and administration times, potentially resulting in increased patient falls, delirium, and mortality.A nurse-led multidisciplinary team consisting of pharmacy, nursing, informatics, neurology, and quality personnel implemented a quality improvement (QI) project between July 2020 and July 2022 to identify patients with Parkinson disease, including those with a secondary diagnosis and those undergoing deep brain stimulation, and customize medication management in order to reduce length of stay, mortality, falls, falls with harm, and 30-day readmissions. The QI project team also evaluated patient satisfaction with medication management.Among patients with a secondary diagnosis of Parkinson disease, the proportion who had medication histories conducted by a pharmacy staff member increased from a baseline of 53% to more than 75% per month. For all patients with Parkinson disease, those whose medication history was taken by a pharmacy staff member had orders matching their home regimen 89% of the time, whereas those who did not had orders matching the home regimen only 40% of the time. Among patients with a secondary diagnosis of Parkinson disease, the length-of-stay index decreased from a baseline of 1 to 0.94 and observed-to-expected mortality decreased from 1.03 to 0.78. The proportion of patients experiencing a fall decreased from an average of 5% to 4.08% per quarter, while the proportion of patients experiencing a fall with harm decreased from an average of 1% to 0.75% per quarter. The rate of 30-day readmissions decreased from 10.81% to 4.53% per quarter. Patient satisfaction scores were 1.95 points higher for patients who had medication histories taken by pharmacy than for those who did not (5 versus 3.05).

The new 2023 ESC guidelines for the management of cardiomyopathies: a guiding path for cardiologist decisions.

In the ESC 2023 guidelines, cardiomyopathies are conservatively defined as 'myocardial disorders in which the heart muscle is structurally and functionally abnormal, in the absence of coronary artery disease, hypertension, valvular disease, and congenital heart disease sufficient to cause the observed myocardial abnormality'. They are morpho-functionally classified as hypertrophic, dilated, restrictive, and arrhythmogenic right ventricular cardiomyopathy with the addition of the left ventricular non-dilated cardiomyopathy that describes intermediate phenotypes not fulfilling standard disease definitions despite the presence of myocardial disease on cardiac imaging or tissue analysis. The new ESC guidelines provide 'a guide to the diagnostic approach to cardiomyopathies, highlight general evaluation and management issues, and signpost the reader to the relevant evidence base for the recommendations'. The recommendations and suggestions included in the document provide the tools to build up pathways tailored to specific cardiomyopathy (phenotype and cause) and define therapeutic indications, including target therapies where possible. The impact is on clinical cardiology, where disease-specific care paths can be assisted by the guidelines, and on genetics, both clinics and testing, where deep phenotyping and participated multi-disciplinary evaluation provide a unique tool for validating the pathogenicity of variants. The role of endomyocardial biopsy remains underexploited and confined to particular forms of restrictive cardiomyopathy, myocarditis, and amyloidosis. New research and development will be needed to cover the gaps between science and clinics. Finally, the opening up to disciplines such as bioinformatics, bioengineering, mathematics, and physics will support clinical cardiologists in the best governance of the novel artificial intelligence-assisted resources.

Improving care for patients with multiple long-term conditions admitted to hospital: challenges and potential solutions.

Increasing numbers of people live with multiple long-term conditions. These people are more likely to be admitted to hospital, experience adverse outcomes and receive poorer quality care than those with a single condition. Hospitals remain organised around a model of single-organ, disease-specific care which is not equipped to meet the needs of people living with multiple long-term conditions. This article considers these challenges and explores potential solutions. These include different service models to provide holistic, multidisciplinary inpatient and outpatient care across specialty boundaries, training a workforce to deliver high-quality hospital care for people living with multiple long-term conditions, and developing technological, financial and cultural enablers of change. Considerably more research is required to fully appreciate the shared risk factors, underlying mechanisms, patterns and consequences of multiple long-term conditions. This is essential to design and deliver better structures and processes of hospital care for people living with multiple long-term conditions.

Development of a care management support system for preventing severe disease in elderly people requiring long-term care and enabling their continued living at home: Results of a questionnaire survey to identify assessment items

In Japan, it is common for individual elderly patients requiring long-term care to use multiple home care services in order to continue living at home. However, the details of the services provided and patients’ conditions at the time of care are not shared among the service providers.
 To address this issue, our research team aims to develop a website that collectively manages care information, predicts declines in activities of daily living (ADL) based on artificial intelligence (AI) analysis, and if necessary, automatically sends reports to service providers and the care manager in charge of the patient. 
 The target population of this study are elderly people with care needs living at home, their families, care managers, and home care service providers. 
 This research is being conducted with the cooperation of elderly individuals requiring care and their families, while always listening to the opinions of the parties involved. In developing the web system, we collaborated with a researcher specializing in care management and another researcher specializing in website development.
 This report describes a questionnaire survey conducted to examine the assessment items to be used in a “care management support system for prevention of severe disease and continuation of living at home for elderly people requiring long-term care”, which our research team is working to develop. Firstly, the assessment items presented in “Appropriate care management techniques: Basic care and disease-specific care” published by the Japanese Ministry of Health, Labour and Welfare were discussed among the author, co-authors, and care managers who were not the subjects of this study, and 73 assessment items were extracted. For each of the 73 items, a questionnaire was developed asking “How important do you think it is for the elderly requiring care to continue living at home?” Each question was scored on a 5-point scale. Of the 30,631 home care support centers in Japan, 1,000 were randomly selected based on a population-proportional distribution by prefecture and government-designated city. Questionnaires were mailed to a total of 3,000 care managers, three to each center, and 642 valid responses were obtained (valid response rate: 21.4%). 
 Assessment items that the care managers selected as highly important (4.7 points or higher) were “presence or absence of falls”, “status of cognitive impairment if the patient has dementia”, “amount of food intake”, “changes in daily condition”, and “mental and physical statuses of a caregiver (family member)”.
 For the international audience, the development of a “website that predicts declines in ADL based on AI analysis, and if necessary, sends reports to service providers and the care manager in charge of the patient” may provide useful information, as it could be modified to suit the situations in each country and be used effectively in many countries. 
 In the next steps, we plan to conduct interviews with elderly people requiring long-term care, their families, and care managers and determine the data entry items before creating a website and implementing it on a trial basis.

Scale-up Integrated Care for Chronic Diseases in Belgium: a process evaluation of policy dialogues and roadmap interventions

Background. The goal of more integrated care has been on the Belgium health care policy agenda since 2007 with the start of disease specific care trajectories, reports on chronic care and pilot projects at local level. While there is consensus on what needs to be done, the process of how it should be done is much more uncertain. Scale-up of integrated care is complex, because it requires multi-stakeholder action and intersectoral coordination at individual healthcare practice, organizational, and political/system levels, and tailoring to the context in which it is delivered. There is little research on how to scale-up such complex and adaptive interventions.
 The SCUBY project aimed to contribute to scale-up of integrated care through development of evidence-based roadmaps and policy dialogues. This evaluation study examines the SCUBY scale-up intervention, by looking at its implementation outcomes, mechanisms of impact and the interaction with the political, policy and societal circumstances in the Belgium context.
 Methods. The ‘process evaluation for complex interventions’ by the MRC was the evaluation framework. Policy dialogues were defined as the SCUBY-team engagements with key stakeholders to develop and implement roadmaps. They comprised structured formal events, one-to-one interactions with key stakeholders, workshops, consultations, and joining ongoing dialogues of stakeholder networks. The roadmap was a scale-up strategy and included activities, a timeline and a description of the evidence base and key partners/stakeholders involved (change team). Data collection tools included policy dialogue reporting forms and surveys, key informant interviews, policy document review and a project diary. Descriptive and thematic analyses are conducted, together with a policy mapping. 
 Results. The SCUBY team conducted 79 meetings classified as policy dialogues, most of them being small group meetings or network meetings organized by partners. SCUBY organized 6 major policy dialogues and invited a mix of beneficiaries, health system administration representatives, policy makers (from federal and regional level), health care providers and their representative organizations, people involved in organization and coordination of care, care users, and scientific stakeholders. Three themes emerged as being the most important areas for the roadmap: A) primary care practice organization (change management and advocating for primary care nurses); B) data and monitoring (chronic care indicators at primary care practice level and for population health management in Primary Care Zones); and C) healthcare financing (budget for chronic care that stimulates quality and new provider payment models). The roadmap comprised subthemes, with internal objectives (to be reached with our project resources) and external objectives (beyond out sphere of control) and activities. 
 Discussion. Our findings emphasize the importance of adopting a collaborative, networking approach via the organization of various small-size and bigger-size policy dialogues, in order to create real-world impact, by building synergies and coalitions and our researcher team generating boundary spanning skills, as more proximal outcomes. The variation in progress made per roadmap theme was anticipated because of our level of involvement, expertise and resources available. The change team had to find the right balance in the trade-off between relevance and feasibility of certain scale-up strategies.

Impact of a multimorbidity-focused national general practice chronic disease programme on cardiovascular risks factors

Abstract Introduction Multimorbidity occurs in adults of all ages, but the number and complexity of comorbid conditions commonly increases with advancing age. Therefore cardiovascular disease (CVD) in older adults typically occurs in a context of multimorbidity. Current clinical practice and research mainly target single disease-specific care that does not embrace the complexities imposed by concurrent conditions. A national chronic disease programme focused on multimorbid patients was developed, with funding based on process rather than outcome measures. The conditions included were chronic coronary syndromes, heart failure, atrial fibrillation, transient ischaemic attacks, stroke, diabetes, COPD and asthma. This report focuses on the initial results of this programme. Methods The programme commenced in March 2020 and analysis occurred based on patients returned by January 2022. The programme involved general practice teams providing a maximum of two visits to eligible patients every 12 months. The visit structure was supported by adaptation of the electronic health record returns depending on the conditions involved. The programme was introduced on a phased basis so that only those over 65 years were included in this analysis. Among all programme participants who had three visits, data on risk factors such as smoking, alcohol, physical activity, weight, blood pressure (BP), and lipid control were collected. HbA1c was also collected in those with diabetes. Results 186,210 people were enrolled in the programme by January 2022. 13% of patients who were current smokers ceased smoking between first and third programme visits. In those who had inadequate physical activity levels at their first visit, almost 30% had achieved adequate physical activity levels by their third visit. Of those who had increased, high risk or harmful alcohol consumption patterns at visit one, 8.3% had become non-drinkers and 58.7% had normal drinking patterns by visit three. There was a population drop of a mean of 1mmHg in BP during the programme. Of those with elevated BP at visit one, 43.4% had a BP <140/90 mmHg at visit three. The mean LDL cholesterol of the cohort was 2.2 mmol/L. In those with diabetes and ischaemic heart disease, 49% had an LDL cholesterol <1.8mmol/l. By visit three, 23% of those with an LDL cholesterol initially above target subsequently had an LDL level <1.8 mmol/L. The mean HbA1c in people with diabetes was 53.5 mmol/mol. 40% of those with a HbA1c >64mmol/mol reduced this level between first and third visits. 81% of patients had received influenza vaccination. 75% of patients had received a pneumococcal vaccine. Conclusion Despite the COVID 19 pandemic a general practice based multimorbidity focused chronic disease management programme had significant impact on cardiovascular risk factors.

Treatment-seeking behaviour among 15–49-year-olds with self-reported heart disease, cancer, chronic respiratory disease, and diabetes: a national cross-sectional study in India

BackgroundEighty per cent of India´s non-communicable disease (NCD) mortality is due to four conditions: heart disease, cancer, chronic respiratory disease, and diabetes, which are primarily cause-amenable through treatment. Based on Andersen’s behavioural model of health services use, the current study aimed to identify the predisposing, enabling, and need factors associated with treatment-seeking status among people self-reporting the four main NCDs in India.MethodsCross-sectional study using secondary data. Usual residents aged 15–49 who self-reported cancer (n = 1 056), chronic respiratory disease (n = 10 534), diabetes (n = 13 501), and/or heart disease (n = 5 861) during the fifth National Family and Health Survey (NFHS-5), 2019–21, were included. Treatment-seeking status was modelled separately for each disease using survey-adjusted multivariable logistic regression.Results3.9% of India´s 15–49-year-old population self-reported ≥ 1 of the four main NCDs (0.1% cancer, 1.4% chronic respiratory disease, 2% diabetes, 0.8% heart disease). The percentage that had sought treatment for their condition(s) was 82%, 68%, 76%, and 74%, respectively. Greater age and having ≥ 1 of the NCDs were associated with greater odds of seeking disease-specific treatment. People in the middle or lower wealth quintiles had lower odds of seeking care than the wealthiest 20% for all conditions. Women with diabetes or chronic respiratory disease had greater odds of seeking disease-specific treatment than men. Muslims, the unmarried, and those with health insurance had greater odds of seeking cancer treatment than Hindus, the married, and the uninsured.ConclusionPredisposing, enabling, and need factors are associated with treatment-seeking status among people reporting the four major NCDs in India, suggesting that multiple processes inform the decision to seek disease-specific care among aware cases. Successfully encouraging and enabling as many people as possible who knowingly live with major NCDs to seek treatment is likely contingent on a multi-pronged approach to healthcare policy-making. The need to improve treatment uptake through accessible healthcare is further underscored by the fact that one-fifth (cancer) to one-third (chronic respiratory disease) of 15–49-year-olds reporting a major NCD have never sought treatment despite being aware of their condition.

Coexistence or cooperation? The perspective of people affected by dementia on participation and research‐ a TaNDem study –

AbstractBackgroundSo far, health services research in dementia has yet led to insufficient transfer of research evidence into healthcare practice or implementation of patient and caregiver perspective into the design of research studies. A strong transdisciplinary network of people with dementia, relatives, researchers, and healthcare service providers is needed to improve research and practice and to speed up the interaction between these stakeholders. Here, we aimed to integrate the perspective of people with dementia and caregivers on health services research into the establishment of a translational network for health services research in dementia (TaNDem, funded by the Federal Ministry of Education and Research).MethodsWe interviewed four people with dementia (mean age: 76.0 years; mean MMSE: 25.5) and 16 family caregivers (15 single interviews, one pair; mean age: 62.6 years). We asked participants about their priorities and expectations in dementia research and their motivation to participate in research projects and networks. The interviews were transcribed and analyzed using qualitative content analysis, according to Mayring.ResultsMost interviewees lacked an idea of how research or researchers work. They could only imagine participating in research projects as consultant, but not as co‐researchers with decision‐making power. Participants were afraid of knowledge gaps and embarrassment in the presence of researchers. However, participating in research projects was perceived as essential to prevent and treat dementia for future affected ones. The interviews elicit five areas of interest that should be addressed by the network: pathogenic themes (e.g., early disease detection; prevention), communication & arrangement (e.g., finding support and supply), disease specific care (specialized staff and facilities), support offers (self‐help; case management) and tasks for policy (plan supply capacities; solve the shortage of staff).ConclusionThe interviewees identified research gaps that contrasted with the self‐perceived focus of researchers on the research topics. Research must evolve to become more tangible, visible, and understandable for people with dementia and relatives so they can participate actively and on a long‐term basis in research projects. We need case management and a culture of participation to reach people with dementia and their relatives with offers of supply, support, and participation in research.

Co-occurring Medical Multimorbidity, Mental Illness, and Substance Use Disorders Among Older Criminal Legal System-Involved Veterans.

Older veterans involved in the criminal legal system (CLS) may have patterns of multimorbidity that place them at risk for poor health outcomes. To estimate the prevalence of medical multimorbidity (≥2 chronic medical diseases), substance use disorders (SUDs), and mental illness among CLS-involved veterans aged 50 and older. Using Veterans Health Administration health records, we estimated the prevalence of mental illness, SUD, medical multimorbidity, and the co-occurrence of these conditions among veterans by CLS involvement as indicated by Veterans Justice Programs encounters. Multivariable logistic regression models assessed the association between CLS involvement, the odds for each condition, and the co-occurrence of conditions. Veterans aged 50 and older who received services at Veterans Health Administration facilities in 2019 (n=4,669,447). Mental illness, SUD, medical multimorbidity. An estimated 0.5% (n=24,973) of veterans aged 50 and older had CLS involvement. For individual conditions, veterans with CLS involvement had a lower prevalence of medical multimorbidity compared with veterans without but had a higher prevalence of all mental illnesses and SUDs. After adjusting for demographic factors, CLS involvement remained associated with concurrent mental illness and SUD (adjusted odds ratio [aOR] 5.52, 95% CI=5.35-5.69), SUD and medical multimorbidity (aOR=2.09, 95% CI=2.04-2.15), mental illness and medical multimorbidity (aOR=1.04, 95% CI=1.01-1.06), and having all 3 simultaneously (aOR=2.42, 95% CI=2.35-2.49). Older veterans involved in the CLS are at high risk for co-occurring mental illness, SUDs, and medical multimorbidity, all of which require appropriate care and treatment. Integrated care rather than disease-specific care is imperative for this population.

The Burden of Cervical Conization in Privately Insured Young and Mid-Adult Women in the United States.

In 2019, the United States (US) Advisory Committee on Immunization Practices (ACIP) recommended that healthcare providers engage in shared clinical decision making for adults aged 27-45 who may benefit from HPV vaccination. However, it is difficult to assess these benefits as there is a lack of data on HPV burden on young and mid-adult women. This analysis estimates the incidence of conization and the burden associated with treating pre-cancerous states related to HPV with a loop electrosurgical excision procedure (LEEP) or a cold knife conization (CKC) among commercially insured women aged 18-45. This retrospective cohort study used the IBM MarketScan commercial claims encounter database for women aged 18-45 treated with conization. We assessed the annual incidence of conization (2016-2019) and adjusted the two-year health care costs post-conization using a multivariable Generalized Linear Model (GLM)-accounting for follow-up time and other characteristics-stratified by the age groups, namely 18-26 and 27-45. The inclusion criteria were met by 6735 women, with a mean age of 33.9 years (SD = 6.2). Conization incidence was lowest for women aged 18-26 (41/100,000 to 62/100,000 women-years) and highest for women aged 31-35 (243/100,000 to 269/100,000). The GLM-adjusted, all-cause healthcare costs per patient per year were USD 7279 and USD 9249 in the 18-26 and 27-45 age groups, respectively. The adjusted costs for disease-specific care were USD 3609 and USD 4557 for women ages 18-26 and 27-45, respectively. The burden of conization and the associated costs were significant, indicating a potential healthcare benefit of HPV vaccination among young and middle-aged women.

Preliminary Attainability Assessment of Real-World Data for Answering Major Clinical Research Questions in Breast Cancer Brain Metastasis: Framework Development and Validation Study.

In recent decades, real-world evidence (RWE) in oncology has rapidly gained traction for its potential to answer clinical questions that cannot be directly addressed by randomized clinical trials. Integrating real-world data (RWD) into clinical research promises to contribute to more sustainable research designs, including extension, augmentation, enrichment, and pragmatic designs. Nevertheless, clinical research using RWD is still limited because of concerns regarding the shortage of best practices for extracting, harmonizing, and analyzing RWD. In particular, pragmatic screening methods to determine whether the content of a data source is sufficient to answer the research questions before conducting the research with RWD have not yet been established. We examined the PAR (Preliminary Attainability Assessment of Real-World Data) framework and assessed its utility in breast cancer brain metastasis (BCBM), which has an unmet medical need for data attainability screening at the preliminary step of observational studies that use RWD. The PAR framework was proposed to assess data attainability from a particular data source during the early research process. The PAR framework has four sequential stages, starting with clinical question clarification: (1) operational definition of variables, (2) data matching (structural/semantic), (3) data screening and extraction, and (4) data attainability diagramming. We identified 5 clinical questions to be used for PAR framework evaluation through interviews and validated them with a survey of breast cancer experts. We used the Samsung Medical Center Breast Cancer Registry, a hospital-based real-time registry implemented in March 2021, leveraging the institution's anonymized and deidentified clinical data warehouse platform. The number of breast cancer patients in the registry was 45,129; it covered the period from June 1995 to December 2021. The registry consists of 24 base data marts that represent disease-specific breast cancer characteristics and care pathways. The outcomes included screening results of the clinical questions via the PAR framework and a procedural diagram of data attainability for each research question. Data attainability was tested for study feasibility according to the PAR framework with 5 clinical questions for BCBM. We obtained data sets that were sufficient to conduct studies with 4 of 5 clinical questions. The research questions stratified into 3 types when we developed data fields for clearly defined research variables. In the first, only 1 question could be answered using direct data variables. In the second, the other 3 questions required surrogate definitions that combined data variables. In the third, the question turned out to be not feasible for conducting further analysis. The adoption of the PAR framework was associated with more efficient preliminary clinical research using RWD from BCBM. Furthermore, this framework helped accelerate RWE generation through clinical research by enhancing transparency and reproducibility and lowering the entry barrier for clinical researchers.

How Can a Bundled Payment Model Incentivize the Transition from Single-Disease Management to Person-Centred and Integrated Care for Chronic Diseases in the Netherlands?

To stimulate the integration of chronic care across disciplines, the Netherlands has implemented single-disease management programmes (SDMPs) in primary care since 2010; for example, for COPD, type 2 diabetes mellitus, and cardiovascular diseases. These disease-specific chronic care programmes are funded by bundled payments. For chronically ill patients with multimorbidity or with problems in other domains of health, this approach was shown to be less fit for purpose. As a result, we are currently witnessing several initiatives to broaden the scope of these programmes, aiming to provide truly person-centred integrated care (PC-IC). This raises the question if it is possible to design a payment model that would support this transition. We present an alternative payment model that combines a person-centred bundled payment with a shared savings model and pay-for-performance elements. Based on theoretical reasoning and results of previous evaluation studies, we expect the proposed payment model to stimulate integration of person-centred care between primary healthcare providers, secondary healthcare providers, and the social care domain. We also expect it to incentivise cost-conscious provider-behaviour, while safeguarding the quality of care, provided that adequate risk-mitigating actions, such as case-mix adjustment and cost-capping, are taken.

Driving time-based identification of gaps in specialised care coverage: An example of neuroinflammatory diseases in Germany.

Due to the growing complexity in monitoring and treatment of many disorders, disease-specific care and research networks offer patients certified healthcare. However, the networks' ability to provide health services close to patients' homes usually remains vague. Digital Health Technologies (DHTs) help to provide better care, especially if implemented in a targeted manner in regions undersupplied by specialised networks. Therefore, we used a car travel time-based isochrone approach to identify care gaps using the example of the neuroinflammation-focused German healthcare and research networks for multiple sclerosis (MS), myasthenia gravis (MG), myositis and immune-mediated neuropathy. Excellence centres were mapped, and isochrones for 30, 60, 90 and 120 minutes were calculated. The resulting geometric figures were aggregated and used to mask the global human settlement population grid 2019 to estimate German inhabitants that can reach centres within the given periods. While 96.48% of Germans can drive to an MS-focused centre within one hour, coverage is lower for the rare disease networks for MG (48.3%), myositis (43.1%) and immune-mediated neuropathy (56.7%). Within 120 minutes, more than 80% of Germans can reach a centre of any network. Besides the generally worse covered rural regions such as North-Eastern Germany, the rare disease networks also show network-specific regional underrepresentation. An isochrone-based approach helps identify regions where specialised care is hard to reach, which might be especially troublesome in the case of an often disabled patient collective. Patient care could be improved by focusing deployments of disease-specific DHTs on these areas.