The FoodImage™ smartphone app transmits to researchers users’ photographs of food selection and food waste, and includes user-tagged information about waste reasons and destination. Twenty-four ...participants were trained to record food waste using FoodImage, food waste diaries requiring visual estimation of waste quantities, and diaries requiring scale weights. Participants used each method during three staged food-waste scenarios (food preparation, eating, and clean-out) in a randomized crossover trial. Two participants had extreme values for the weighed diary method; therefore, accuracy results are reported with and without these two participants’ data. Error was calculated as waste estimated with the experimental method minus directly weighed waste. Mean absolute error from FoodImage was significantly smaller than or equal to the error from both diary methods in each scenario. Furthermore, the mean values from FoodImage were equivalent to directly weighed values in two out of the three tasks; while weighed diaries were equivalent in two tasks only when the two participants with extreme values were removed. Visually estimated diaries were equivalent for only one task. All 24 participants preferred FoodImage to diaries and all rated FoodImage as less time consuming. Over one week, FoodImage would require ~24 fewer minutes of users’ time to record all data. Unlike food waste diaries, FoodImage also transmits data to researchers in real-time and provides detailed data on food selection and intake.
ClinicalTrials.gov
Identifier:
NCT03309306
Background
Therapy choices in relapsed/refractory multiple myeloma (RRMM) should consider patient satisfaction with treatment, because it is associated with adherence to therapy, health outcomes, and ...medical safety. The primary objective of this pilot cross‐sectional observational study was to ascertain factors associated with patient‐reported treatment satisfaction in RRMM.
Patients and Methods
Patients with a self‐reported diagnosis of RRMM recruited from PatientsLikeMe, MyelomaCrowd, and Facebook were administered an electronic survey that included questions on demographics and clinical history, treatment experience, economic burden, and standardized patient‐reported outcome measures, including the Treatment Satisfaction Questionnaire for Medication, Eastern Cooperative Oncology Group performance status (ECOG PS) measure, and Work Productivity and Activity Impairment Questionnaire: Specific Health Problem V2.0. Univariable and multivariable analyses were used to identify predictors of patient‐perceived treatment satisfaction.
Results
One hundred sixty patients with RRMM participated in the study, with a median of two prior relapses and 66.3% reporting the most recent relapse within the last 12 months. ECOG PS ≥2 was associated with lower patient‐reported global satisfaction and perceived effectiveness of current treatment. In addition to shorter time spent receiving therapy, orally administered treatment was the strongest predictor of higher satisfaction with treatment convenience. For patients receiving an injectable drug‐containing regimen versus an all‐oral regimen, respectively, time spent receiving multiple myeloma‐directed therapy was higher (12.6 vs. 4.0 hours per month), and total monthly indirect costs were $1,033 and $241.
Conclusion
Poor ECOG PS was linked to reduced treatment satisfaction and perceived effectiveness of current therapy, whereas an all‐oral regimen was associated with increased treatment convenience satisfaction.
Implications for Practice
This study suggests that attributes including better Eastern Cooperative Oncology Group performance status, less time spent receiving treatment, and oral route of treatment administration lead to higher patient‐perceived satisfaction with relapsed/refractory multiple myeloma (RRMM) treatment. Oral route of administration was also associated with less time spent receiving treatment and reduced economic burden for patients. Increased attention to these factors in shared treatment decision making is warranted to help identify individual patient needs, preferences, and expectations for RRMM treatments, to resolve dissatisfaction issues, and to improve the experience of patients with RRMM.
This article identifies factors associated with patient‐reported satisfaction with multiple myeloma therapy and the treatment‐related time burden and indirect costs among patients with relapsed or refractory multiple myeloma and their caregivers. Improved understanding of these variables will inform treatment decisions across this complex treatment landscape.
The FoodImageTM smartphone app transmits users’ photographs of food selection and food waste to researchers, and includes user-tagged information about waste reasons and destination. Twenty-four ...participants were trained to record food waste using FoodImage, food waste diaries requiring visual estimation of waste quantities, and diaries requiring scale weights. Participants used each method during three staged food-waste scenarios (food preparation, eating, and clean-out) in a randomized crossover trial. Two participants had extreme values for the weighed diary method; therefore, accuracy results are reported with and without these two participants’ data. Error was calculated as waste estimated with the experimental method minus directly weighed waste. Mean absolute error from FoodImage was significantly smaller than or equal to the error from both diary methods in each scenario. Furthermore, the mean values from FoodImage were equivalent to directly weighed values in two out of the three tasks; while weighed diaries were equivalent in two tasks only when the two participants with extreme values were removed. Visually estimated diaries were equivalent for only one task. All 24 participants preferred FoodImage to diaries and all rated FoodImage as less time consuming. Over one week, FoodImage would require ~24 fewer minutes of users’ time to record all data. Unlike food waste diaries, FoodImage also transmits data to researchers in real-time and provides detailed data on food selection and intake.
Although there has been growing research on the burden of treatment, the current state of evidence on measuring this concept is unknown. This scoping review aimed to provide an overview of the ...current state of knowledge as well as clear recommendations for future research, within the context of chronic disease.
Four health-based databases, Scopus, CINAHL, Medline, and PsychInfo, were comprehensively searched for peer-reviewed articles published between the periods of 2000-2016. Titles and abstracts were independently read by two authors. All discrepancies between the authors were resolved by a third author. Data was extracted using a standardized proforma and a comparison analysis was used in order to explore the key treatment burden measures and categorize them into three groups.
Database searching identified 1458 potential papers. After removal of duplications, and irrelevant articles by title, 1102 abstracts remained. An additional 22 papers were added via snowball searching. In the end, 101 full papers were included in the review. A large number of the studies involved quantitative measures and conceptualizations of treatment burden (n = 64; 63.4%), and were conducted in North America (n = 49; 48.5%). There was significant variation in how the treatment burden experienced by those with chronic disease was operationalized and measured.
Despite significant work, there is still much ground to cover to comprehensively measure treatment burden for chronic disease. Greater qualitative focus, more research with cultural and minority populations, a larger emphasis on longitudinal studies and the consideration of the potential effects of "identity" on treatment burden, should be considered.
Accelerated computerization of health systems begun in Slovenia in 2008 with the eZdravje (eHealth) project. Various aspects of the system enable patients to track different aspects of their health ...care more efficiently. The eNaročanje (eScheduling) part enables patients to be more actively integrated into the health services, as well as presents significant help for administrative work and more time for health education.
The aim of our research was to show which type of patient appointment scheduling is the least burdensome for nurses.
We used a quantitative research methodology. Collecting data took place in May 2017. We gathered the various patterns of scheduling patients for appointments in a single month at an outpatient care unit in the north-eastern region of Slovenia. We collected the data concerning the time needed to perform different patients’ appointment scheduling and we interpreted the data with the help of descriptive statistics.
Between January 2016 and January 2017 less than 1% of patients made appointments through eNaročanje. Since January 2017, when eNaročanje started in studied unit, the percentage of patients who made their appointments through eNaročanje increased, and by May 2017 there were 60 (20%) of the overall 298 patients in the study who used the system. We came to the conclusion that in the 17 workdays in May 2017 there were 126 (42%) appointments made by men and 172 (58%) by women. An average time spent personally or on the phone calls scheduling was significantly higher than the time spent through the eNaročanje service. We have shown that out of 17 workdays, the nurse spends more than an entire workday for the patient appointment scheduling tasks (8 hours, 13 minutes and 31 seconds). Information and communication based solutions can bring many advantages, especially regarding the time burden challenges that the nurses currently face, optimization of administrative work as well as promoting health care through education of patients.
Phenylketonuria (PKU) is a rare inborn error of metabolism that affects the ability of patients to metabolise phenylalanine (Phe). Lifelong management of blood Phe levels is required in order to ...avoid the complications associated with PKU. This constitutes a severely protein restricted diet, and regular monitoring of Phe levels. Management of PKU may be costly and time-consuming for adult patients or caregivers of PKU-affected children. A cross-sectional study was performed with patients or their caregivers in the Netherlands to gain insight into the personal time burden and cost of living with PKU.
A systematic literature review was performed to identify all aspects of PKU management that may pose a financial or time burden on patients or caregivers. Findings were confirmed through interviews with PKU experts and feedback from patients and caregivers, and consolidated into a questionnaire that aimed to evaluate the impact of each of these factors. Early and continuously treated adult patients and caregivers from seven metabolic centres were recruited to complete the questionnaire online.
22 adult patients and 24 caregivers participated in the study. Managing a Phe-restricted diet represented an extra time burden of 1h and 24min for caregivers and 30min for adult patients per day. Caregivers reported a significantly higher time burden than adult patients. The median total out-of-pocket cost (OOPC) for patients was €604 annually, with 99% of expenditure on low-protein food products. Greater disease severity was significantly associated with increased OOPC and time burden for both adult patients and caregivers.
Management of PKU is associated with a considerable time burden for both caregivers of children with PKU and adult patients. Caregivers of PKU-affected children reported a significantly higher time burden than adult patients. The OOPC of caregivers and patients was mainly driven by the expenditure on low protein food.
•First study to investigate the time burden and cost of living with PKU.•46 PKU patients completed a web based questionnaire.•Management of PKU poses a considerable time burden on PKU patients.•Greater disease severity was associated with increased time burden and costs.
Scand J Caring Sci; 2013; 27; 44–50
Are informal caregivers less happy than noncaregivers? Happiness and the intensity of caregiving in combination with paid and voluntary work
Informal caregivers ...are one of the pillars of home health care. In the Netherlands, the free help they provide to sick or disabled family members, acquaintances or friends exceeds the number of hours of home care provided by professionals. While the government welcomes their contribution, there is concern about the potential burden their work imposes on them. On the one hand, there is concern that informal caregiving could be experienced as a burden and diminish subjective well‐being; on the other, helping others as a meaningful activity might increase their subjective well‐being. Happiness ratings (as an indicator of subjective well‐being) of persons whose involvement in informal caregiving, voluntary work and paid work ranged from none to full time were analysed using multivariate regression models, which also took into account levels of physical disability and socio‐economic characteristics (age, sex, household composition, education level). The sample consisted of 336 informal caregivers and 1765 noncaregivers in the Dutch population. In line with the subjective well‐being assumption, the results suggest that caregivers are happier than noncaregivers when they provide care for <6 hours a week; and in line with the burden assumption, the results show that providing care for more than 11 hours a week is associated with lower levels of happiness. Other results contradicted the burden assumption that combining caregiving with paid or voluntary work is associated with more time burden and less happiness. The result that combining caregiving with paid employment or volunteering is related to higher rates of happiness confirms the subjective well‐being assumption. It is concluded that these cross‐sectional results open ways to longitudinal research that can inform governments in the development of policies to support informal caregivers.
We examine the financial and time burdens associated with caring for children with chronic conditions, focusing on disparities across types of conditions. Using linked data from the 2003 to 2006 ...National Health Interview Survey and 2004–2008 Medical Expenditure Panel Survey, we created measures of financial burden (out-of-pocket healthcare costs, the ratio of out-of-pocket healthcare costs to family income, healthcare costs paid by insurance, and total healthcare costs) and time burden (missed school time due to illness or injury and the number of doctor visits) associated with 14 groups of children’s chronic conditions. We used the two-part model to assess the effect of condition on financial burden and finite mixture/latent class model to analyze the time burden of caregiving. Controlling for the influences of other socio-demographic characteristics on caregiving burden, children with chronic conditions have higher financial and time burdens relative to caregiving burdens for healthy children. Levels of financial burden and burden sharing between families and insurance system also vary by type of condition. For example, children with pervasive developmental disorder or heart disease have a relatively low financial burden for families, while imposing a high cost on the insurance system. In contrast, vision difficulties are associated with a high financial burden for families relative to the costs borne by others. With respect to time burden, conditions such as cerebral palsy and heart disease impose a low time burden, while conditions such as pervasive developmental disorder are associated with a high time burden. This study demonstrates that differences exist in caregiving burden for children by type of chronic condition. Each condition has a unique profile of time and financial cost burden for families and the insurance system. These results have implications for policymakers and for families’ savings and employment decisions.
Objectives
To examine which components of medical homes affect time families spend arranging/coordinating health care for their children with special health care needs (CSHCNs) and providing health ...care at home.
Data Sources
2009–2010 National Survey of Children with Special Health Care Needs (NS‐CSHCN), a population‐based survey of 40,242 CSHCNs.
Study Design
NS‐CSHCN is a cross‐sectional, observational study. We used generalized ordered logistic regression, testing for nonproportional odds in the associations between each of five medical home components and time burden, controlling for insurance, child health, and sociodemographics.
Data Collection/Extraction Methods
Medical home components were collected using Child and Adolescent Health Measurement Initiative definitions.
Principal Findings
Family‐centered care, care coordination, and obtaining needed referrals were associated with 15–32 percent lower odds of time burdens arranging/coordinating and 16–19 percent lower odds providing health care. All five components together were associated with lower odds of time burdens, with greater reductions for higher burdens providing care.
Conclusions
Three of the five medical home components were associated with lower family time burdens arranging/coordinating and providing health care for children with chronic conditions. If the 55 percent of CSHCNs lacking medical homes had one, the share of families with time burdens arranging care could be reduced by 13 percent.
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