Evolving assessment pathways for precision oncology medicines to improve patient access: a tumor-agnostic lens.

BACKGROUND: Genomic and molecular alterations are increasingly important in cancer diagnosis, and scientific advances are opening new treatment avenues. Precision oncology (PO) uses a patient's genomic profile to determine optimal treatment, promising fewer side effects and higher success rates. Within PO, tumor-agnostic (TA) therapies target genomic alterations irrespective of tumor location. However, traditional value frameworks and approval pathways pose challenges which may limit patient access to PO therapies. OBJECTIVES: This study describes challenges in assessing PO and TA medicines, explores possible solutions, and provides actionable recommendations to facilitate an iterative life-cycle assessment of these medicines. METHODS: After reviewing the published literature, we obtained insights from key stakeholders and European experts across a range of disciplines, through individual interviews and an industry workshop. The research was guided and refined by an international expert committee through 2 sounding board meetings. RESULTS: The current challenges faced by PO and TA medicines are multiple and can be demonstrated through real-world examples of the current barriers and opportunities. A life-cycle approach to assessment should be taken, including key actions at the early stages of evidence generation, regulatory and reimbursement stage, as well as payment and adoption solutions that make use of the evolving evidence base. Working toward these solutions to maximize PO medicine value is a shared responsibility and stands to benefit all stakeholders. CONCLUSIONS: Our call to action is to expand access to comprehensive genomic testing, foster a learning health care system, enable fast and equitable access to cost-effective treatments, and ultimately improve health outcomes.

Investigating the Cost-Effectiveness of Telemonitoring Patients With Cardiac Implantable Electronic Devices: Systematic Review.

BACKGROUND: Telemonitoring patients with cardiac implantable electronic devices (CIEDs) can improve their care management. However, the results of cost-effectiveness studies are heterogeneous. Therefore, it is still a matter of debate whether telemonitoring is worth the investment. OBJECTIVE: This systematic review aims to investigate the cost-effectiveness of telemonitoring patients with CIEDs, focusing on its key drivers, and the impact of the varying perspectives. METHODS: A systematic review was performed in PubMed, Web of Science, Embase, and EconLit. The search was completed on July 7, 2022. Studies were included if they fulfilled the following criteria: patients had a CIED, comparison with standard care, and inclusion of health economic evaluations (eg, cost-effectiveness analyses and cost-utility analyses). Only complete and peer-reviewed studies were included, and no year limits were applied. The exclusion criteria included studies with partial economic evaluations, systematic reviews or reports, and studies without standard care as a control group. Besides general study characteristics, the following outcome measures were extracted: impact on total cost or income, cost or income drivers, cost or income drivers per patient, cost or income drivers as a percentage of the total cost impact, incremental cost-effectiveness ratios, or cost-utility ratios. Quality was assessed using the Consensus Health Economic Criteria checklist. RESULTS: Overall, 15 cost-effectiveness analyses were included. All studies were performed in Western countries, mainly Europe, and had primarily a male participant population. Of the 15 studies, 3 (20%) calculated the incremental cost-effectiveness ratio, 1 (7%) the cost-utility ratio, and 11 (73%) the health and cost impact of telemonitoring. In total, 73% (11/15) of the studies indicated that telemonitoring of patients with implantable cardioverter-defibrillators (ICDs) and cardiac resynchronization therapy ICDs was cost-effective and cost-saving, both from a health care and patient perspective. Cost-effectiveness results for telemonitoring of patients with pacemakers were inconclusive. The key drivers for cost reduction from a health care perspective were hospitalizations and scheduled in-office visits. Hospitalization costs were reduced by up to US $912 per patient per year. Scheduled in-office visits included up to 61% of the total cost reduction. Key drivers for cost reduction from a patient perspective were loss of income, cost for scheduled in-office visits and transport. Finally, of the 15 studies, 8 (52%) reported improved quality of life, with statistically significance in only 1 (13%) study (P=.03). CONCLUSIONS: From a health care and patient perspective, telemonitoring of patients with an ICD or a cardiac resynchronization therapy ICD is a cost-effective and cost-saving alternative to standard care. Inconclusive results were found for patients with pacemakers. However, telemonitoring can lead to a decrease in providers' income, mainly due to a lack of reimbursement. Introducing appropriate reimbursement could make telemonitoring sustainable for providers while still being cost-effective from a health care payer perspective. TRIAL REGISTRATION: PROSPERO CRD42022322334; https://tinyurl.com/puunapdr.

Cost of illness in patients with post-treatment Lyme disease syndrome in Belgium.

BACKGROUND: A proportion of patients with Lyme borreliosis (LB) report long-term persisting signs and symptoms, even after recommended antibiotic treatment, which is termed post-treatment Lyme disease syndrome (PTLDS). Consensus on guidance regarding diagnosis and treatment is currently lacking. Consequently, patients suffer and are left searching for answers, negatively impacting their quality of life and healthcare expenditure. Yet, health economic data on PTLDS remain scarce. The aim of this article is therefore to assess the cost-of-illness related to PTLDS, including the patient perspective. METHODS: PTLDS patients (N = 187) with confirmed diagnosis of LB were recruited by a patient organization. Patients completed a self-reported questionnaire on LB-related healthcare utilization, absence from work and unemployment. Unit costs (reference year 2018) were obtained from national databases and published literature. Mean costs and uncertainty intervals were calculated via bootstrapping. Data were extrapolated to the Belgian population. Generalized linear models were used to determine associated covariates with total direct costs and out-of-pocket expenditures. RESULTS: Mean annual direct costs amounted to €4618 (95% CI €4070-5152), of which 49.5% were out-of-pocket expenditures. Mean annual indirect costs amounted to €36 081 (€31 312-40 923). Direct and indirect costs at the population level were estimated at €19.4 and 151.5 million, respectively. A sickness or disability benefit as source of income was associated with higher direct and out-of-pocket costs. CONCLUSIONS: The economic burden associated with PTLDS on patients and society is substantial, with patients consuming large amounts of non-reimbursed healthcare resources. Guidance on adequate diagnosis and treatment of PTLDS is needed.

Physicians' views on optimal use and payment system for telemedicine: a qualitative study.

BACKGROUND: Telemedicine is already in use in daily practice, but appropriate reimbursement and physician payment is falling behind in many countries. One reason is the limited availability of research on the matter. This research therefore examined physicians' views on the optimal use and payment modalities for telemedicine. METHODS: Sixty-one semi-structured interviews were conducted with physicians from 19 medical disciplines. Interviews were encoded using thematic analysis. RESULTS: Telephone and video televisits tend not to be used as a first patient contact, except for triage of patients in urgency situations. Several minimum required modalities for the payment system of televisits and telemonitoring were identified. For televisits these were: (i) remuneration of both telephone- and videovisits to increase healthcare equity, (ii) little or no differentiation between videovisit and in-person visit fee to make videovisits financially attractive and sustainable for physicians, (iii) differentiation of televisit fee per medical discipline, and (iv) quality requirements such as mandatory reporting in the patient's medical file. The identified minimum required modalities for telemonitoring were: (i) an alternative payment scheme than fee-for-service, (ii) remunerating not only physicians but also other involved health professionals, (iii) designating and remunerating a coordinator, and (iv) distinguishing sporadic vs. continuously follow-up. CONCLUSIONS: This research investigated the telemedicine usage behavior of physicians. Moreover, several minimum required modalities were identified for a physician-supported payment system of telemedicine, as these innovations necessitate challenging and innovation of the healthcare payment systems as well.

Last year of life of adults with congenital heart diseases: causes of death and patterns of care.

AIMS: Although life expectancy in adults with congenital heart diseases (CHD) has increased dramatically over the past five decades, still a substantial number of patients dies prematurely. To gain understanding in the trajectories of dying in adults with CHD, the last year of life warrants further investigation. Therefore, our study aimed to (i) define the causes of death and (ii) describe the patterns of healthcare utilization in the last year of life of adults with CHD. METHODS AND RESULTS: This retrospective mortality follow-back study used healthcare claims and clinical data from BELCODAC, which includes patients with CHD from Belgium. Healthcare utilization comprises cardiovascular procedures, CHD physician contacts, general practitioner visits, hospitalizations, emergency department (ED) visits, intensive care unit (ICU) admissions, and specialist palliative care, and was identified using nomenclature codes. Of the 390 included patients, almost half of the study population (45%) died from a cardiovascular cause. In the last year of life, 87% of patients were hospitalized, 78% of patients had an ED visit, and 19% of patients had an ICU admission. Specialist palliative care was provided to 17% of patients, and to only 4% when looking at the patients with cardiovascular causes of death. CONCLUSIONS: There is a high use of intensive and potentially avoidable care at the end of life. This may imply that end-of-life care provision can be improved. Future studies should further examine end-of-life care provision in the light of patient's needs and preferences, and how the healthcare system can adequately respond.

Cost-effectiveness of exercise referral schemes: a systematic review of health economic studies.

BACKGROUND: This systematic review aimed to provide an overview of the existing literature on cost-effectiveness of exercise referral schemes (ERSs). METHODS: A systematic search was performed in MEDLINE, EMBASE, EconLit, Web of Science and PsycINFO. Main inclusion criteria were: (1) insufficiently active people; (2) ERSs and (3) full health economic evaluations. No publication year limits were applied. The methodological quality was assessed independently by two reviewers using the Consensus Health Economic Criteria (CHEC) checklist. RESULTS: Fifteen eligible publications were retrieved, presenting results of 12 different studies. Compared with usual care, ERSs were found to be cost-effective in a majority of the analyses, but with modest health gains and costs per individual. These cost-effectiveness results were also sensitive to small changes in input parameters. Two studies found that ERSs combined with a pedometer/accelerometer are cost-effective, compared with usual ERS practice. Two other studies found that an ERS with phone support and an ERS with face-to-face support might be equally effective, with similar costs. CONCLUSION: Although the literature demonstrated that ERSs could be cost-effective compared with usual care, these results were not robust. Based on a small number of studies, ERSs could be optimized by using tracking devices, or by providing a choice to the participants about the delivery mode. There is need for clarity on the effectiveness of and attendance to ERS, as more certainty about these key input parameters will strengthen health-economic evidence, and thus will allow to provide a clearer message to health policy-makers.

A public health value-based healthcare paradigm for HIV.

BACKGROUND: HIV patients face considerable acute and chronic healthcare needs and battling the HIV epidemic remains of the utmost importance. By focusing on health outcomes in relation to the cost of care, value-based healthcare (VBHC) proposes a strategy to optimize quality of care and cost-efficiency. Its implementation may provide an answer to the increasing pressure to optimize spending in healthcare while improving patient outcomes. This paper describes a pragmatic value-based healthcare framework for HIV care. METHODS: A value-based HIV healthcare framework was developed during a series of roundtable discussions bringing together 16 clinical stakeholder representatives from the Belgian HIV reference centers and 2 VBHC specialists. Each round of discussions was focused on a central question translating a concept or idea to the next level of practical implementation: 1) how can VBHC principles be translated into value-based HIV care drivers; 2) how can these value-based HIV care divers be translated into value-based care objectives and activities; and 3) how can value-based HIV care objectives and activities be translated into value-based care indicators. Value drivers were linked to concrete objectives and activities using a logical framework approach. Finally, specific, measurable, and acceptable structure, process and outcomes indicators were defined to complement the framework. RESULTS: Our framework identifies 4 core value areas where HIV care would benefit most from improvements: Prevention, improvement of the cascade of care, providing patient-centered HIV care and sustaining a state-of-the-art HIV disease management context. These 4 core value areas were translated into 12 actionable core value objectives. For each objective, example activities were proposed. Indicators are suggested for each level of the framework (outcome indicators for value areas and objectives, process indicators for suggested activities). CONCLUSIONS: This framework approach outlines how to define a patient- and public health centered value-based HIV care paradigm. It proposes how to translate core value drivers to practical objectives and activities and suggests defining indicators that can be used to track and improve the framework's implementation in practice.

Facilitating [corrected] More Efficient Negotiations for Innovative Therapies: A Value-Based Negotiation Framework.

OBJECTIVES: An increasing number of innovative therapies (e.g., gene- and cell-based treatments) have been developed in the past 20 years. Despite the significant clinical potential of these therapies, access delays may arise because of differing perspectives of manufacturers and payers regarding issues such as the value of the product, clinical and financial uncertainties, and sustainability.Managed entry agreements (MEAs) can enable access to treatments that would not be reimbursed by conventional methods because of such concerns. However, although MEA typologies exist, there is currently no structured process to come to agreements on MEAs, which can be difficult to decide upon and implement.To facilitate more structured MEA negotiations, we propose a conceptual "value-based negotiation framework" with corresponding application tools. METHODS: The framework was developed based on an iterative process of scientific literature review and expert input. RESULTS: The framework aims to (i) systematically identify and prioritize manufacturer and payer concerns about a new treatment, and (ii) select a mutually acceptable combination of MEA terms that can best address priority concerns, with the lowest possible implementation burden. CONCLUSIONS: The proposed framework will be tested in practice, and is a step toward supporting payers and manufacturers to engage in more structured, transparent negotiations to balance the needs of both sides, and enabling quicker, more transparent MEA negotiations and patient access to innovative products.

Oral healthcare delivery in institutionalised older people: A health-economic evaluation.

OBJECTIVES: This health-economic evaluation aimed to assess the cost-effectiveness of a number of alternatives for preventive and curative oral health care in institutionalised older people in Flanders. METHODS: A six-state Markov model was used to compare expected costs and healthy oral years (HOYs) of four alternatives: (1) usual care; (2) on-site preventive care; (3) on-site preventive care + curative care in the community; and (4) on-site preventive care + on-site curative care. A healthcare payer perspective was adopted, and the time horizon was 10 years. Deterministic and probabilistic sensitivity analyses were performed. RESULTS: Incremental cost-effectiveness ratios (ICERs) of alternatives 2, 3 and 4 (all compared to alternative 1) were as follows: (2) 7944 €/HOY gained; (3) 1576 €/HOY gained; and (4) 1132 €/HOY gained. Hence, alternatives 2 and 3 were not cost-effective compared to alternative 4. The probability that oral care interventions are more effective and cost-saving than usual care was <3% for all three interventions. CONCLUSIONS: For institutionalised older people, on-site solutions for preventive and curative oral health care might be the most cost-effective alternative. It should be kept in mind that on-site solutions require large initial investment and that the advanced age of the population and the high costs of oral health care make it unlikely that these interventions would become cost-saving, even in the long term.

Cost-effectiveness analysis of a school- and community-based intervention to promote a healthy lifestyle and prevent type 2 diabetes in vulnerable families across Europe: the Feel4Diabetes-study.

The Feel4Diabetes-study implemented a school- and community-based intervention to promote healthy lifestyle and prevent type 2 diabetes mellitus (T2DM) in six European countries. The intervention included a special focus on families at increased T2DM risk. The current study evaluates the intervention's cost-effectiveness. A Markov-type health economic model was developed to predict the incidence of T2DM and its complications. Incremental cost-effectiveness ratios (lifetime horizon, societal perspective) were calculated based on the overall intervention effect on health behaviour, and stratified for low- and high-risk families. Sensitivity analyses captured input parameters uncertainty. A budget impact analysis was performed. The increase in children's water consumption and physical activity led to a modest gain in quality adjusted life years (QALYs) at a low intervention cost and budget impact. Medical cost savings due to avoided illness could only be achieved on the very long-term (>30 years). The intervention in its entirety was cost-effective (more QALYs at a reasonable investment) in Belgium, Finland, Bulgaria, and Hungary, while being dominant (net savings and more QALYs) in Greece and Spain. Results were cost-effective for the low-risk families, who only received the school- and community-based intervention component. Results for the high-risk families were only cost-effective (with considerable uncertainty) in Greece and Spain, but not when the intervention would need to be repeated. The Feel4Diabetes-intervention is potentially cost-effective, especially in countries with a high overweight and obesity prevalence, at a limited budget impact. The incremental financial investments to reach and support high-risk families did not result in the hoped-for health benefits.

Economic Evaluation of Vaccines: Belgian Reflections on the Need for a Broader Perspective.

OBJECTIVES: The standard framework of economic evaluation of health programs, which is increasingly used for policy funding decisions, is insufficiently equipped to reflect the full range of health and economic benefits conferred by vaccines and thus undervalues vaccination. METHODS: In 2019, a group of Belgian health economic and clinical experts, supported by 2 senior international vaccination experts (1 American, 1 Belgian), convened 4 roundtable meetings to highlight which particular value elements of vaccination remain neglected in economic evaluations. RESULTS: They concluded that the standard economic evaluation framework fails to reflect the full value of vaccination with respect to prevention of complications linked to some vaccine-preventable diseases, health gains for caregivers, herd effects, changes in exposure to and distribution of serotypes, the effect on antimicrobial resistance, productivity gains for caregivers and patients, and the distributive implications of vaccination programs. CONCLUSIONS: Here, suggestions are made regarding how these shortcomings can be addressed in future economic evaluations of vaccines and how a more level playing field between vaccines and other health programs can be created.

Cost-effectiveness of an in-home respite care program to support informal caregivers of persons with dementia: A model-based analysis.

OBJECTIVES: To evaluate cost-effectiveness of an in-home respite care program in addition to standard community-based dementia care to support informal caregivers of persons with dementia compared with standard community-based dementia care. METHODS: An age-dependent decision-analytic Markov model was applied from a third-party payer and a societal perspective projecting results of a quasi-experimental study over a time horizon of 5 years assuming a repetition of the program every 6 months. Additionally, to deal with uncertainty and to test robustness of the model scenario, one-way and probabilistic sensitivity analyses were conducted. RESULTS: Implementing the program resulted in a quality-adjusted life year (QALY) gain of 0.14 in favor of the invention group compared with controls and an incremental cost of 1270€ from the third-party payer perspective and of 1220€ from the societal perspective. Next, an incremental cost-effectiveness ratio of 9042€/QALY and of 8690€/QALY was found in the base case, from the third-party payer perspective and the societal perspective, respectively. The scenario, one-way sensitivity, and probabilistic analyses demonstrated robustness of the base-case results. CONCLUSION: This cost-effectiveness analysis suggests that an in-home respite care program in addition to standard community-based dementia care is a cost-effective approach compared with standard community-based dementia care only. These findings provide more insight into the value of such services for the patient, the caregiver, and for society.

Methodology of the health economic evaluation of the Feel4Diabetes-study.

BACKGROUND: The clinical and economic burden of type 2 diabetes mellitus on society is rising. Effective and efficient preventive measures may stop the increasing prevalence, given that type 2 diabetes mellitus is mainly a lifestyle-driven disease. The Feel4Diabetes-study aimed to tackle unhealthy lifestyle (unhealthy diet, lack of physical activity, sedentary behaviour, and excess weight) of families with a child in the first grades of elementary school. These schools were located in regions with a relatively low socio-economic status in Belgium, Bulgaria, Finland, Greece, Hungary and Spain. Special attention was paid to families with a high risk of developing type 2 diabetes mellitus. METHODS: The aim of this paper is to describe the detailed methodology of the intervention's cost-effectiveness analysis. Based on the health economic evaluation of the Toybox-study, both a decision analytic part and a Markov model have been designed to assess the long-term (time horizon of 70 year with one-year cycles) intervention's value for money. Data sources used for the calculation of health state incidences, transition probabilities between health states, health state costs, and health state utilities are listed. Intervention-related costs were collected by questionnaires and diaries, and attributed to either all families or high risk families only. CONCLUSIONS: The optimal use of limited resources is pivotal. The future results of the health economic evaluation of the Feel4Diabetes-study will contribute to the efficient use of those resources.

Healthcare resource utilization in patients on lipid-lowering therapies outside Western Europe and North America: findings of the cross-sectional observational International ChoLesterol management Practice Study (ICLPS).

BACKGROUND: Few recent large-scale studies have examined healthcare consumption associated with dyslipidemia in countries outside Western Europe and North America. METHODS: This analysis, from a cross-sectional observational study conducted in 18 countries in Eastern Europe, Asia, Africa, the Middle East and Latin America, evaluated avoidable healthcare consumption (defined as ≥1 hospitalization for cardiovascular reasons or ≥1 visit to the emergency room for any reason in the previous 12 months) in patients receiving stable lipid-lowering therapy (LLT). A total of 9049 patients (aged ≥18 years) receiving LLT for ≥3 months and who had had their low-density lipoprotein cholesterol (LDL-C) value measured on stable LLT in the previous 12 months were enrolled between August 2015 and August 2016. Patients who had received a proprotein convertase subtilisin/kexin type 9 inhibitor in the previous 6 months were excluded. Patients were stratified by cardiovascular risk level using the Systematic Coronary Risk Estimation chart for high-risk countries. RESULTS: The proportion of patients at their LDL-C goal was 32.1% for very-high risk patients compared with 55.7 and 51.9% for patients at moderate and high cardiovascular risk, respectively. Overall, 20.1% of patients had ≥1 reported hospitalization in the previous 12 months (7.9% for cardiovascular reasons), 35.2% had ≥1 intensive care unit stay and 13.8% visited the emergency room. Avoidable healthcare resource consumption was reported for 18.7% patients overall, and in 27.8, 7.7, 7.7 and 13.2% of patients at very-high, high, moderate and low risk, respectively. Across all risk groups 22.4% of patients not at LDL-C goal and 16.6% of patients at LDL-C goal had avoidable healthcare resource consumption. Being at very-high cardiovascular risk, having cardiovascular risk factors (including hypertension and smoking), and having factors indicating that the patient may be difficult to treat (including statin intolerance, comorbidities and chronic medication), were independent risk factors for avoidable healthcare resource consumption (all p <0.05). CONCLUSIONS: Healthcare resource consumption associated with adverse clinical outcomes was observed in patients on stable LLT in countries outside Western Europe and North America, particularly those at very-high cardiovascular risk and those who were difficult to treat.

Cost-utility analysis of lifestyle interventions to prevent type 2 diabetes in women with prior gestational diabetes.

BACKGROUND: To compare estimated costs and health outcomes of lifestyle interventions for the prevention of type 2 diabetes mellitus in women who had gestational diabetes. METHODS: An age-specific Markov model was applied comparing costs and quality-adjusted life years (QALYs) of three alternatives: 'doing nothing'; an annual reminder system (ARS) with an awareness campaign ('ARS-awareness'); and an ARS with an intensive lifestyle intervention ('ARS-ILS'). A healthcare payer perspective was adopted, the time horizon was 30 years and the setting was Flanders (Belgium). Sensitivity analyses were performed. RESULTS: 'ARS-awareness' was extendedly dominated. Per 10 000 participants, 'ARS-ILS' cost €13 210 256 more and gained 496 QALYs compared with 'doing nothing' (26 632 €/QALY), with a 63% probability of being cost effective, given a cost effectiveness threshold of 35 000 €/QALY. A scenario analysis showed that 'ARS-ILS' for 15 years only offered to women with prediabetes (compared with 'doing nothing') has an 89.5% likelihood of being dominant. CONCLUSIONS: 'ARS-ILS' may be the preferred intervention. However, the probability of being cost effective was low. Based on further scenario analyses, we recommend healthcare decision makers to consider the application of a more intensive alternative, focused on the highest risk profiles and with a shorter intervention duration.

The combined impact of dependency on caregivers, disability, and coping strategy on quality of life after ischemic stroke.

BACKGROUND: To estimate the additional impact of coping and of being dependent on caregivers, over and above the large effects of disability on utility after ischemic stroke. METHODS: A total of 539 patients were recruited into an observational, retrospective study when returning for a check-up between 3 and 36 months after an ischemic stroke. Patients' modified Rankin Scale (mRS), dependency on caregivers, the Brandtstädter and Renner Coping questionnaire (with summary scores: Tenacity of Goal Pursuit (TGP) and Flexible Goal Adjustment (FGA) coping styles), EQ-5D-3 L and co-morbidities were evaluated. RESULTS: In multivariable regression, greater disability (mRS) resulted in large utility losses, between 0.06 for mRS 1 to 0.65 for mRS 5 (p < 0.0001). Dependency on caregivers caused an additional dis-utility of 0.104 (p = 0.0006) which varied by mRS (0.044, 0.060, 0.083, 0.115, 0.150 and 0.173 for mRS 0-5). The effect of coping on utility varied by coping style, by the disability level of the patient and by his or her dependency on caregivers. FGA coping was associated with additional increases in utility (p < 0.0001) over and above the effect of disability and dependency, whereas TGA had no significant impact. FGA coping was associated with larger utility changes among more disabled patients (0.018 to 0.105 additional utility, for mRS 0 to mRS 5 respectively). Dependent patients had more to gain from FGA coping than patients who function independently of caregivers: utility gains were between 0.049 and 0.072 for moderate to high levels of FGA coping. In contrast, the same positive evolution in FGA coping resulted in 0.039 and 0.057 utility gain among independent patients. Finally, we found that important stroke risk factors and co-morbidities, such as diabetes and atrial fibrillation, were not predictors of EQ-5D utility in a multivariable setting. CONCLUSIONS: This study suggests that treatment strategies targeting flexible coping styles and decreasing dependency on caregivers may lead to significant gains in quality of life above and beyond treatment strategies that solely target disability.

Effectiveness of an in-home respite care program to support informal dementia caregivers: A comparative study.

OBJECTIVES: Dementia is a major public health problem with important physical, psychosocial, emotional, and financial consequences for patients, their caregivers, and society. Since patients prefer to be managed at home, extensive research has been conducted into effectiveness of psychosocial interventions to support informal caregivers. The aim of this study was to assess the effectiveness of an in-home respite care program. METHODS: In a prospective quasi-experimental study, 99 dyads who received an in-home respite care program were compared at 6 months post-baseline, with 99 matched dyads receiving standard dementia care. Additionally, the short-term effect of the program was evaluated 14 to 15 days post-intervention. The primary outcome was caregiver burden. The secondary outcomes were: desire to institutionalize the patient, caregiver quality of life, and frequency and impact of behavioral problems. Mixed model analyses were performed to evaluate the impact of the intervention. RESULTS: After 6 months, no significant difference on caregiver burden was observed, but intervention group caregivers had a significant lower desire to institutionalize the patient compared with control group caregivers (adj.diff = -0.51; p = .02). Shortly after the program, intervention group caregivers also had a significant lower role strain (adj.diff = 0.75; p = .05), and a lower burden on social and family life (adj.diff = 0.55; p = .05) compared with baseline. CONCLUSIONS: This study was the first comparative study to investigate effectiveness of an in-home respite care program to support informal caregivers of persons with dementia. The results partly confirm earlier positive findings from explorative studies.

Opinions of general and adult congenital heart disease cardiologists on care for adults with congenital heart disease in Belgium: a qualitative study.

BACKGROUND: The growing adult congenital heart disease (CHD) population requires efficient healthcare organisation. It has been suggested that clinically appropriate care be provided for individual patients on the least complex level possible, in order to alleviate saturation of special care programmes. METHODS: Semi-structured interviews with 10 general and 10 adult CHD cardiologists were conducted to elucidate opinions on healthcare organisation in Belgium. A particular focus was placed on the potential role of general cardiologists. The software program NVivo 12 facilitated thematic analysis. RESULTS: A discrepancy existed between how general cardiologists thought about congenital care and what adult CHD cardiologists considered the minimum knowledge required to adequately treat patients. Qualitative data were categorised under the following themes: knowledge dissemination, certification, (de)centralisation of care, the role of adult CHD cardiologists, the role of dedicated nurse specialists, and patient referral. It appeared to be pivotal to organise care in such a way that providing basic care locally does not impede the generation of sufficient patient volume, and to continue improving communications between different care levels when there is no referral back. Moreover, practical knowledge is best disseminated locally. Cardiologists' opinions on certification and on the role of dedicated nurse specialists were mixed. CONCLUSION: On the basis of the results, we propose five recommendations for improving the provision of care to adults with CHD. A multidimensional approach to defining the role of different healthcare professionals, to improving communication channels, and to effectively sensitising healthcare professionals is needed to improve the organisation of care.

Real-world healthcare utilization in adult congenital heart disease: a systematic review of trends and ratios.

BACKGROUND: As a result of medical advances, the adult congenital heart disease population is rapidly expanding. Nonetheless, most patients remain prone to increased morbidity and mortality. Therefore, long-term medical resource use is required. This systematic review aims to present the trends over the past decades of medical resource utilization in adult congenital heart disease as well as its current status, with a focus on hospitalizations, emergency department visits, outpatient cardiology visits, and visits to other healthcare professionals. METHODS: MEDLINE (Pubmed), Embase, and Web of Science were searched for retrospective database research publications. The ISPOR checklist for retrospective database research was used for quality appraisal. Trends over time are explored. RESULTS: Twenty-one articles met the inclusion criteria. All but one of the studies was conducted in Western Europe and North America. The absolute number of hospitalizations has been increasing over the last several decades. This increase is highest in patients with mild lesions, although these numbers are largely driven by hospitalizations of patients with an atrial septal defect or a patent foramen ovale. Meanwhile, outpatient cardiology visits are increasing at an even higher pace, and occur most often in geriatric patients and patients with severe lesions. Conversely, the number of hospitalizations per 100 patients is decreasing over time. Literature is scarce on other types of healthcare use. CONCLUSION: A strong rise in healthcare utilization is noticed, despite the mitigating effect of improved efficiency levels. As the population continues to grow, innovative medical management strategies will be required to accommodate its increasing healthcare utilization.

Factors Associated with the Caregivers' Desire to Institutionalize Persons with Dementia: A Cross-Sectional Study.

BACKGROUND/AIMS: Dementia is one of the main reasons for institutionalization among the elderly. Few studies have explored factors associated with the caregivers' (CG) desire to institutionalize (DTI) a person with dementia (PWD). The objective of this study is to identify modifiable and non-modifiable psychosocial and sociodemographic factors associated with a caregiver's DTI. METHODS: Cross-sectional data of 355 informal CG of community-dwelling PWD were analyzed. Several characteristics were identified in CG and PWD to be included in a multivariable regression model based on the purposeful selection method. RESULTS: Positively modifiable associated factors were: higher CG burden, being affected by behavioral problems, and respite care use. Positively associated non-modifiable factors were: CG older age, being professionally active, and CG higher educational level. Cohabitation and change of professional situation were negatively associated. CONCLUSION: Although no causality can be assumed, several practical recommendations can be suggested. First of all, these results reconfirm the importance of multicomponent strategies, especially support aimed at decreasing burden and in learning coping strategies. Also, CG might benefit from information about support options, such as respite care services. Finally, special attention should be given to older and working CG. In the latter, flexible and adaptive working conditions might alleviate burden and therefore reduce the DTI of the PWD.