Parents' preferences for respite care of children with medical complexity.

BACKGROUND: The number of children with medical complexity (CMC) is increasing worldwide. For these children and their families, various forms of support are legislated; among them, short-stay respite care has a great unmet need. We examined such children's parents' preferences for respite care and their willingness to pay. METHODS: We used discrete choice experiments (DCEs) to estimate the parents' preferences and willingness to pay. Parents whose children used overnight short-stay respite services answered a questionnaire to compare two hypothetical facilities of respite care having seven attributes and three levels. The DCE data was analyzed using the conditional logit model. The willingness to pay was calculated based on DCE estimates. RESULTS: A total of 70 parents participated in this study and mean age of their children was 7.8 years (standard deviation [SD] 4.3). Among those children, 67 (96%) had the severest certification of disability, and 27 (38%) used a ventilator at home. We found that the parents' highest preferences was the best level of medical care level that can manage ventilators (coefficient 1.61, 95% confidence interval [CI]: 1.32-1.90). The better and best level of medical care, daily care, education/nursing, and emergency care were preferred over basic quality services. Willingness to pay for the best level of medical care was approximately 75,367 JPY per night. CONCLUSION: This study shows a need for respite care that can deliver high-level medical care, especially for the management of ventilators, to CMC. This finding can serve as a basis for promoting respite care services.

The relationship of perceived discrimination in healthcare and future falls among community-dwelling older persons from an English longitudinal cohort.

BACKGROUND: The objective of this study is to examine the relation between the perceived discrimination suffered by older adults aged 60 and over during a healthcare encounter and its effects on the likelihood of falling 4 and 8 years later. METHODS: To identify discrimination, we used the English Longitudinal Study of Ageing (ELSA) data collected in 2010-2011 (wave 5) that asked respondents about feeling discriminated against by doctors or at hospitals in the past year. Falls were assessed by the question: "Have you fallen down in the last two years?" in subsequent waves. We performed longitudinal analyses using the 2014-2015 (wave 7) and 2018-2019 (wave 9) follow-ups. Multivariable logistic regression was used to estimate the odds ratios of falling. RESULTS: At baseline, 707 (15.1%) of all respondents experienced healthcare discrimination. Those suffering from discrimination in health care had 64% higher chances of falling 4 years later (odds ratio: 1.637, 95% confidence interval: 1.131-2.368) compared to those who did not, adjusting for age, sex, marital status, wealth, ethnicity, education levels, self-perceived health, depressive symptoms, and difficulties with basic and/or instrumental activities of daily living (ADL/IADL) and difficulties with walking. After 8 years, the effect was not statistically significant. Older age was the only significant detrimental factor at both 4 and 8 years. CONCLUSIONS: Understanding discrimination in health care is important to enable safe and welcoming environments for the timely future use of services. These results remind us of the physical risk and the complex panorama of bio-psychosocial determinants involved in tackling discrimination over time.

Association between Having Cancer and Psychological Distress among Family Caregivers Using Three Years of a Nationwide Survey Data in Japan.

We aimed to describe the characteristics of caregivers with cancer compared to those without and analyze the association between having cancer and caregivers' psychological distress in Japan. We used data from the Japanese Comprehensive Survey of Living Conditions in 2010, 2013, and 2016. The participants were 5258 family caregivers aged ≥40 years, caring for only one family member whose information in the dataset was available for all the covariates included in the model. The family caregivers' psychological distress was defined by the Kessler Psychological Distress Scale (K6) score (K6 ≥ 5). We conducted a Poisson regression analysis to examine the association between having cancer and family caregivers' distress. The sample of family caregivers consisted of mostly females (69.3%) and people within the 40-64 years age group (51.8%). As a result, family caregivers with cancer increased across the survey periods; a higher number of participants were unemployed. When adjusted for covariates, including the presence of other diseases, having cancer was significantly associated with distress (risk ratio 1.33, 95% confidence interval 1.05-1.69) among family caregivers. Family caregivers with cancer are expected to increase in the future; it is important to provide them with more support in managing both their treatment and caregiving to cope with their distress.

An analytical framework for group simulation model building.

This paper presents a framework for understanding and improving the process of simulation model building involving a group of domain experts, classifying the different roles the model may play at various stages of its development. The framework consists of four different "object roles", defined along two dimensions: a functional dimension (boundary object vs. representational object) and a knowledge dimension (epistemic object vs. technical object). A model can take different roles during the development process, e.g. for facilitating communication, for gaining insight into the real-world system, or for experimentation and policy evaluation. The use of the framework is illustrated by two case studies in healthcare. Its relevance and applicability are examined through a survey on model use. The survey was conducted among a group of modelling consultants with experience of using both discrete-event simulation and system dynamics within the NHS, and indicated the potential usefulness of the framework.

The burden of disease and the cost of illness attributable to child maltreatment in Japan: long-term health consequences largely matter.

BACKGROUND: Child maltreatment leads to enormous adverse short- and long-term health outcomes. The aim of this study is to estimate the burden of disease and the cost of illness attributable to child maltreatment in Japan. METHODS: An incidence-based top-down cost of illness analysis was conducted to estimate medical costs and burden of disease attributable to child maltreatment based on a societal perspective. The assessment included short-term and long-term medical costs and burden of disease measured by Disability-Adjusted Life Years (DALYs) that generates mortality and morbidities, based on several national surveys and systematic review. We considered the main types of child maltreatment as exposure, for which the incidence was obtained from literature review. Based on population attributable fractions (PAFs), burden of disease of physical and mental health consequences attributable to child maltreatment were estimated. Then DALYs were converted into monetary value. The lifetime economic burden was finally estimated by combining with medical costs and subject to sensitivity analysis. RESULTS: The lifetime disease burden expressed in DALYs was estimated at 1,047,580 DALYs (95% CI 788,388 - 1326,80 DALYs) for the cohort victims in 2016. Based on the incidence according to literature review, the overall lifetime economic burden was 50.24 billion USD, equivalent to 1.3 million times of gross domestic product (GDP) per capita. Among the total economic burden, costs of suffering and pain based on DALYs were accounting for 81.3%. These estimates were 7-8 times of conservative estimates which used incidence data from official reported cases. CONCLUSIONS: This study found that the national lifetime cost was huge and equivalent to 1.3 million GDP per capita, and its burden of disease was approximately equal to that of colon and rectum cancers or stomach cancer. Our findings particularly in terms of revealed the considerable burden of disease in long term and potential effects of the strengthened maternal and child care as the preventive strategy.

Advance care planning in the community: factors of influence.

OBJECTIVES: This study aims to identify factors among British community-based adults associated with advance care planning engagement. Factors are then compared among six domains of wishes: medical care, spiritual and religious needs, privacy and peace, dignified care, place of death and pain relief. METHODS: Cross-sectional data were analysed from a stratified random sample of adults across Great Britain (England, Scotland and Wales) who were interviewed on their attitudes towards death and dying. Weighted multivariable logistic regression tested for associations with expressing any end-of-life wishes and then for each separate domain. RESULTS: Analysis of 2042 respondents (response rate: 53.5%) revealed those less likely to have discussed their wishes were: male, younger, born in the UK, owned their residence, had no experience working in health or social care, had no chronic conditions or disabilities, had not experienced the death of a close person in the last 5 years and feel neither comfortable nor uncomfortable or uncomfortable talking about death. Additional factors among the six domains associated with having not discussed wishes include: having less and more formal education, no religious beliefs, lower household income and living with at least one other person. CONCLUSIONS: This study is the first to be conducted among a sample of community-dwelling British adults and the first of its kind to compare domains of end-of-life wishes. Our findings provide an understanding of social determinants which can inform a public health approach to end-of-life care that promotes advance care planning among compassionate communities.

Patient and Physician Preferences for Therapy Characteristics for Psoriasis: A Discrete Choice Experiment in Japan.

BACKGROUND: With progress being made in the treatment of psoriasis, a variety of clinical research and treatment options are being pursued. This study used a discrete choice experiment (DCE) to estimate treatment characteristic preferences for both patients and physicians in Japan. Subgroup analysis was also applied in order to examine differences within the range of patients and within the range of physicians. METHODS: The DCE was developed with the input of clinical experts in the treatment of psoriasis to ensure inclusion of the most relevant attributes at appropriate levels in a way that is understandable to both physicians and patients. The study was conducted on parallel samples of Japanese physicians (n = 161) and Japanese psoriasis patients (n = 306) through an online panel. For each sample, a conditional logit statistical model and subgroup analysis were then performed to estimate respondent preferences for treatment attributes. RESULTS: The overall findings are that better treatment efficacy as measured by proportion of patients achieving 90% reduction in the Psoriasis Area and Severity Index score (PASI 90), lower risk of adverse events and the availability of a bio-holiday are important decision factors for both patients and physicians. Low injection frequency is less of a priority for both samples. Also, while both groups demonstrate a preference to receive the treatment injections at a clinic by a healthcare professional rather than self-injection at home, this is more pronounced for the patient sample. The physician sample shows considerably more emphasis on the type of injection, though both samples prefer subcutaneous injections to intravenous injections. IMPLICATIONS: This study reveals the importance of addressing both clinical effectiveness and process factors in systemic, non-topical psoriasis treatments to gain acceptance by both physicians and patients. As well as efficacy (as measured by PASI 90), which remains a consistent priority in treatment, administration and development of new treatments should also consider process factors such as the mode of administration and possibility for a bio-holiday.

Hematologists' Preferences for First-line Therapy Characteristics for Multiple Myeloma in Japan: Attribute Rating and Discrete Choice Experiment.

PURPOSE: With the progress being made in the treatment of multiple myeloma and other complex cancers, a variety of clinical research and treatment options are being pursued. This study uses a discrete choice experiment (DCE) to estimate treatment characteristic preferences of hematologists in Japan. METHODS: A 2-stage process was applied within this study. The first stage is an attribute-rating exercise in which each of the full list of 21 attributes is rated on its importance by the clinicians when selecting a first-line therapy. The top 8 rated attributes from a stepwise logistic regression model are then used to develop a DCE to estimate hematologists' willingness to trade-off characteristics of the treatment options in their recommendation of a first-line treatment. A logit model was used to identify the attribute levels that were the strongest determinants of the physicians' treatment preferences. FINDINGS: From among the potential treatment attributes presented, improved overall survival had the most significant impact on the treatment choice of participating Japanese hematologists. Improvement in the ability to promptly reduce M-protein is also a highly prioritized treatment characteristic, with hematologists willing to sacrifice just over 1 month extra overall survival for this. Additionally, the hematologists' value improved suitability for chromosomal abnormalities with poor prognosis, suitability of the mechanism of action in initial treatment, and promptly improving calcium-renal-anemia-bone symptoms each at roughly 0.9 months extended overall survival. The reduction of adverse events is among the other significant factors in choice of treatment, though it was not found to be as strong a determinant as those mentioned. IMPLICATIONS: This study reinforces the expectation that clinical research and treatment options should continue to focus on overall survival and are key priorities in multiple myeloma treatment development. However, clinicians are willing to consider and trade off other clinical factors and markers in their choice of treatment. The potential improvements presented were also found to have a greater impact on treatment choice than aversion to the potential worse outcomes presented.

Dendrimer Conjugate of [4-(Tetradecanoylamino)benzyl]phosphonic Acid (S32826) as an Autotaxin Inhibitor.

Autotaxin is an extracellular phospholipase D that catalyzes the hydrolysis of lysophosphatidyl choline (LPC) to bioactive lipid lysophosphatidic acid (LPA). LPA has been implicated in many pathological processes relevant to cancer, including cell migration and invasion, proliferation, and survival. The most potent autotaxin inhibitor described to date is the LPA analogue S32826 (IC50 5.6 nM). S32826 and many other autotaxin inhibitors are notably lipophilic, creating a need to improve their physical properties. Polymers are becoming an increasingly useful tool in the delivery of drugs and have the potential to improve the properties of small molecules. Herein we report the synthesis of a S32826 dendrimer conjugate and its biological evaluation. The conjugate was found to inhibit autotaxin activity using two different substrates and to decrease the migration of an ovarian cancer cell line modified to overexpress autotaxin. Furthermore, the conjugate potentiated activation of caspase 3/7 induced by carboplatin.