The Impact of Gastrointestinal Symptoms on Patients' Well-Being: Best-Worst Scaling (BWS) to Prioritize Symptoms of the Gastrointestinal Symptom Score (GIS).

BACKGROUND: The gastrointestinal symptom score (GIS) is used in a standardized form to ascertain dyspeptic symptoms in patients with functional dyspepsia in clinical practice. As a criterion for evaluating the effectiveness of a treatment, the change in the summed total point value is used. The total score ranges from 0 to 40 points, in which a higher score represents a more serious manifestation of the disease. Each symptom is included with equal importance in the overall evaluation. The objective of this study was to test this assumption from a patients' perspective. Our aim was to measure the priorities of patients for the ten gastrointestinal symptoms by using best-worst scaling. METHOD: A best-worst scaling (BWS) object scaling (Case 1) was applied. Therefore, the symptoms of the GIS were included in a questionnaire using a fractional factorial design (BIBD-balanced incomplete block design). In each choice set, the patients selected the component that had the most and the least impact on their well-being. The BIB design generated a total of 15 choice sets, which each included four attributes. RESULTS: In this study, 1096 affected patients were asked for their priorities regarding a treatment of functional dyspepsia and motility disorder. Based on the data analysis, the symptoms abdominal cramps (SQRT (B/W): -1.27), vomiting (SQRT (B/W): -1.07) and epigastric pain (SQRT (B/W): -0.76) were most important and thus have the greatest influence on the well-being of patients with functional dyspepsia and motility disorders. In the middle range are the symptoms nausea (SQRT (B/W): -0.69), acid reflux/indigestion (SQRT (B/W): -0.29), sickness (SQRT (B/W): -0.26) and retrosternal discomfort (SQRT (B/W): 0.26), whereas the symptoms causing the least impact are the feeling of fullness (SQRT (B/W): 0.80), early satiety (SQRT (B/W): 1.54) and loss of appetite (SQRT(B/W): 1.95). DISCUSSION: Unlike the underlying assumption of the GIS, the BWS indicated that patients did not weight the 10 symptoms equally. The results of the survey show that the three symptoms of vomiting, abdominal cramps and epigastric pain are weighted considerably higher than symptoms such as early satiety, loss of appetite and the feeling of fullness. The evaluation of the BWS data has illustrated, however, that the restrictive assumption of GIS does not reflect the reality of dyspeptic patients. CONCLUSIONS: In conclusion, a preference-based GIS is necessary to make valid information about the real burden of illness and to improve the burden of symptoms in the indication of gastrointestinal conditions. The findings of the BWS demonstrate that the common GIS is not applicable to represent the real burden of disease. The results suggest the potential modification of the established GIS by future research using a stated preference study.

Why do family dementia caregivers reject caregiver support services? Analyzing types of rejection and associated health-impairments in a cluster-randomized controlled intervention trial.

BACKGROUND: Although there are a number of support services accessible for most family dementia caregivers, many caregivers reject available and affordable support. Previous research suggests that rejections of support services may result from insufficient fit of available services with caregivers' unmet needs and a lack of acknowledgement of caregivers' unmet needs and associated support services. The present study investigates (a) the number, proportion and types of caregivers' rejection on recommended tailored support, (b) socio-demographic and clinical determinants of caregiver's rejection of both people with dementia (PwD) and caregivers, and (c) caregivers' health-related variables related to caregivers' rejection. METHODS: Caregivers' rejection of tailored support services was identified based on a standardized, computerized unmet needs assessment conducted by dementia-specific qualified nurses. The present analysis is based on data of n = 226 dyads of caregivers and their community-dwelling PwD who participated in a general practitioner (GP)-based, cluster-randomized intervention trial. The trial was approved by the Ethical Committee of the Chamber of Physicians of Mecklenburg-Western Pomerania, registry number BB 20/11. Data analyses were conducted using Stata/IC 13.1. We conducted Welch's t-test, Pearson's product-moment correlation, and conditional negative binomial regression models with random effects for GP to account for over-dispersed count data. RESULTS: In sum, n = 505 unmet needs were identified and the same number of tailored recommendations were identified for n = 171 family dementia caregivers from the intervention group at baseline. For n = 55 family dementia caregivers not a single unmet need and recommendation were identified. A total of 17.6% (n = 89) of the recommendations were rejected by caregivers. Rejection rates of caregivers differed by type of recommendation. Whereas caregivers' rejection rate on recommendations concerning mental health (3.6%), physical health (2.5%), and social, legal, and financial affairs (0%) were low, caregivers' rejection rates concerning social integration (especially caregiver supporting groups) was high (71.7%). Thus, the rejections of family dementia caregivers are mainly linked to the delegation to caregiver supporting groups. Caregivers' rejections were mainly related to personal factors of caregivers (n = 66), service-related factors (n = 6), relational factors (n = 1), and other factors (n = 17). Furthermore, our results showed that the number of caregivers' rejections was associated with a higher functional status of the PwD and are mainly associated with the rejection of caregiver supporting groups. Thus, caregivers visit supporting groups more often when the PwD shows low abilities in activities of daily living. Importantly, this is independent of the status of cognition and depression of the PwD as well as the physical and mental health of the family dementia caregivers. CONCLUSIONS: Our results underline the importance of understanding factors that determine caregivers' rejection of support services. These need to be specifically addressed in tailored solutions for caregivers' support services. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT01401582 (date: July 25, 2011, prospective registered).

The Role of Personality in Treatment-Related Outcome Preferences Among Pharmacy Students.

Objective. To examine whether personality traits, particularly conscientiousness and agreeableness, were associated with systematic differences in health outcome preferences in cancer treatment scenarios among second-year Doctor of Pharmacy students. Methods. An online survey that quantified outcome preferences using profile best-worst scaling tasks was administered to pharmacy students (n=185). The Big Five personality inventory was used to categorize respondents into tertile-based levels of each trait. Treatment-related health outcomes were described using the EQ-5D-Y system and framed with hypothetical cancer treatment scenarios. Preferences were obtained using count analysis for each treatment-related outcome, and differences based on the level of trait were tested using analysis of variance. Logistic regression was used to test for significant associations between higher levels of a trait and choosing dead over a severe health state. Results. Higher conscientiousness was associated with students who had an approximately 20% more positive preference for "no problems" in the Usual Activities and Pain/Discomfort attributes, as well as a 19% more negative preference for "a lot of problems" in the Pain/Discomfort attribute. No differences in treatment preferences were observed across agreeableness tertiles. Higher levels of personality traits were not significantly associated with choosing death over being in moderate health. Conclusion. Conscientiousness appears to be a factor in treatment-related outcome preferences among pharmacy students. Individuals with higher levels of conscientiousness may be more likely to recommend treatments that are less likely to cause pain or discomfort and negatively impact a patient's usual activities.

Cost-effectiveness of a collaborative dementia care management-Results of a cluster-randomized controlled trial.

INTRODUCTION: The purpose of this study was to determine the cost-effectiveness of collaborative dementia care management (DCM). METHODS: The cost-effectiveness analysis was based on the data of 444 patients of a cluster-randomized, controlled trial, conceptualized to evaluate a collaborative DCM that aimed to optimize treatment and care in dementia. Health-care resource use, costs, quality-adjusted life years (QALYs), and incremental cost per QALY gained were measured over a 24-month time horizon. RESULTS: DCM increased QALYs (+0.05) and decreased costs (-569€) due to a lower hospitalization and a delayed institutionalization (7 months) compared with usual care. The probability of DCM being cost-effective was 88% at willingness-to-pay thresholds of 40,000€ per QALY gained and higher in patients living alone compared to those not living alone (96% vs. 26%). DISCUSSION: DCM is likely to be a cost-effective strategy in treating dementia and thus beneficial for public health-care payers and patients, especially for those living alone.

[The economic and social burden of dementia diseases in Germany-A meta-analysis]. / Ökonomische und gesellschaftliche Herausforderungen der Demenz in Deutschland ­ Eine Metaanalyse.

BACKGROUND: Currently, there are 1.7 million people living with dementia (PwD) in Germany. This number is expected to double within the next decades. Estimates of the total societal economic burden of dementia are currently missing. OBJECTIVES: The aim was to estimate the current and future total cost and excess cost of dementia from a public payer and societal perspective. METHODS: Studies demonstrating the healthcare resource utilization of PwD in Germany were identified. Utilization data were aggregated using the sample size of different studies as a weight. Annual per capita costs of PwD and excess cost of dementia were calculated using standardized unit costs. Current and future costs were calculated based on published prevalence and population forecasts. RESULTS: PwD living at home had lower costs from a payer perspective compared to those who are institutionalized, but higher total societal cost due to the higher informal care time. The total cost for PwD from a payer perspective was 34 billion € in 2016. These costs could reach 90 billion € by 2060. The excess cost of dementia was 18 billion € in 2016 and is estimated to become 49 billion € by 2060 from a payer perspective, representing 54% of the total cost of PwD and up to 15% of the total costs associated with the elderly population. The total societal cost was 73 billion € in 2016 and is estimated to become 194 billion € by 2060. The excess cost of dementia was 54 billion € in 2016 and is estimated to become 145 billion € by 2060, representing 74% of the total societal cost of PwD and 36% of the total societal cost of the elderly. CONCLUSION: Dementia diseases represent a tremendous social and economic burden. Without a cure, supporting caregivers and implementing interventions that delay the functional and cognitive decline will be crucial to relieving the increasing costs.

Comorbidity in Dementia Diseases and Associated Health Care Resources Utilization and Cost.

BACKGROUND: People with dementia (PwD) suffer from coexisting medical conditions, creating complex clinical challenges and increasing the risk of poor outcomes, which could be associated with high healthcare cost. OBJECTIVE: To describe the prevalence of comorbidity in PwD and to analyze the association between comorbidity in dementia diseases and healthcare costs from a payer's perspective. METHODS: This cross-sectional analysis was based on n = 362 PwD of the DelpHi-MV trial (Dementia: Life-and person-centered help in Mecklenburg-Western Pomerania). Comorbidity was assessed using the Charlson comorbidity index (CCI) and was categorized into low, high, and very high comorbidity. Healthcare resource utilization and unit costs were used to calculate costs. Multivariable regression models were applied to analyze the association between comorbidity and costs. RESULTS: Comorbidity was highly prevalent in the sample. 47% of PwD had a very high, 37% a high, and 16% a low comorbidity in addition to dementia. The most prevalent co-existing comorbidity were diabetes mellitus (42%), peripheral vascular disease (28%) and cerebrovascular disease (25%). Total costs significantly increased by 528€ (SE = 214, CI95 = 109-947, p = 0.014) with each further comorbidity, especially due to higher cost for medication and medical aids. Compared with a low comorbidity, a very high comorbidity was significantly associated with 818€ (SE = 168, CI95 = 489-1147, p < 0.001) higher medication costs and 336€ (SE = 161, CI95 = 20-652, p = 0.037) higher cost for medical aids. There were no significant association between a higher comorbidity and cost for formal care services. CONCLUSIONS: Comorbidity in PwD represents a substantial financial burden on healthcare payers and is a challenge for patients, healthcare providers, and the health systems. Innovative approaches are needed to achieve a patient-oriented management of treatment and care in comorbid PwD to reduce long-term costs.

Identifying Unmet Needs of Family Dementia Caregivers: Results of the Baseline Assessment of a Cluster-Randomized Controlled Intervention Trial.

BACKGROUND: Caregivers providing informal care for people with dementia (PwD) often report unmet needs, burden, and health impairments. Optimal support for family dementia caregivers will likely benefit from better understanding and assessment of the prevalence and types of caregivers' unmet needs and associated socio-demographic and clinical characteristics. OBJECTIVE: The present study investigates 1) the number and types of caregivers' unmet needs, 2) socio-demographic and clinical characteristics of both PwD and caregivers, and 3) caregivers' burden and health-related outcomes that are related to caregivers' unmet needs. METHODS: The present analyses are based on cross-sectional data of n = 226 dyads of caregivers and their community-dwelling PwD participating in a comprehensive standardized, computer-based caregivers' needs assessment within a general practitioner (GP)-based, cluster-randomized intervention trial. RESULTS: A total of n = 505 unmet needs were identified for n = 171 caregivers from the intervention group at baseline. Only 24.3% caregivers reported no unmet need (n = 55), whereas 75.7% caregivers had at least one unmet need (n = 171). Caregivers had on average 2.19 unmet needs (mean = 2.19, SD = 2.15). Specifically, 53.1% of caregivers had one up to three unmet needs (n = 120), 18.6% (n = 42) had three up to six unmet needs, and 4.0% (n = 9) had more than six unmet needs. DISCUSSION: Our results underline the importance of a comprehensive needs assessment for family dementia caregivers to develop and implement concepts that can provide family dementia caregivers with optimal support.

The Impact of Hospitalization on Readmission, Institutionalization, and Mortality of People with Dementia: A Systematic Review and Meta-Analysis.

BACKGROUND: People with dementia (PwD) are at a high risk of hospitalization. Hospitals are often not adequately equipped for PwD and discharges often come unexpected. Therefore, PwD are at a risk of adverse outcomes. However, information about those outcomes is rare but crucial for the development of preventive strategies. OBJECTIVES: To conduct a quantitative systematic review and meta-analyses on the impact of a hospitalization on readmission, institutionalization, and mortality in PwD. To identify factors associated with these outcomes. METHODS: PubMed, CENTRAL, and ScienceDirect were searched for studies including terms for dementia, hospital, readmission, institutionalization, and mortality. Relevant were assessed by a quality criteria sheet. Results were summarized in a table. Meta-analysis was conducted with Review Manager 5.3. RESULTS: The search yielded 1,108 studies; 20 fulfilled the inclusion criteria and 10 studies were eligible for meta-analyses. The incidence and relative risk (RR) of mortality (RR 1.74 CI95 % 1.50, 2.05) and institutionalization (RR: 2.16 CI95 % 1.31, 3.56) of PwD was significantly higher when compared to people without dementia. Results according to readmission rate were inconsistent. Factors significantly associated with the examined adverse outcomes were severity of dementia, number of medications, and deficits in daily living activities. CONCLUSION: Hospitalization of PwD lead to adverse outcomes. An improvement in the identification of and care for PwD in the acute setting as well as in after care in the community setting, especially in the interface between both settings, is required to prevent adverse outcomes in hospitalized PwD.

PATIENT PRIORITIES FOR TREATMENT ATTRIBUTES IN ADJUNCTIVE DRUG THERAPY OF SEVERE HYPERCHOLESTEROLEMIA IN GERMANY: AN ANALYTIC HIERARCHY PROCESS.

OBJECTIVES: Severe hypercholesterolemia is a major cause of death in coronary heart disease. New adjunctive drug therapies have passed authorization processes and been launched recently. So far it is not known which properties of the new treatment options generate the highest benefit for patients. The aim was to evaluate patient priorities in the field of adjunctive drug therapy with apheresis. Therapy characteristics were examined as to their relevance to hypercholesterolemia patients. METHODS: To identify all potential patient-relevant treatment characteristics, a systematic literature review and ten interviews with patients were conducted. Seven key characteristics were identified from the patient perspective. Patients' priorities were elicited using an analytic hierarchy process (AHP). RESULTS: In total, N = 61 patients diagnosed with severe hypercholesterolemia and undergoing apheresis participated in the study. The analysis showed predominance for the attribute "reduction of LDL-C level in blood" (Wglobal:0.362). The "risk of myopathy" (Wglobal:0.164), "risk of neurocognitive impairment" (Wglobal:0.161) and "frequency of apheresis" (Wglobal:0.119) were ranked second, third and fourth. Subgroup analyses revealed that "frequency of apheresis" is of greater importance to younger patients, men and/or patients who indicated a reduction in quality of life due to apheresis. CONCLUSIONS: The essential decision criteria for optimal therapy from the patients' perspective were obtained. "Reduction of lipoprotein in blood" was ranked highest compared with the "mode of administration" and "side effects" characteristics. The study offers a transparent approach for the identification of patient priorities for adjunctive PCSK9-inhibitor therapy in apheresis-treated hypercholesterolemia. The project can be used by healthcare decision makers to understand the importance of each patient-relevant endpoint.

Choice Blindness and Health-State Choices among Adolescents and Adults.

OBJECTIVE: To assess the feasibility and validity of using a discrete choice experiment format to elicit health preferences in adolescents by comparing illogical choices and choice-blindness rates between adults and adolescents; and to explore the relationship between personality traits and health-state choices. METHODS: A convenience sample of adults and adolescents (12 to 17 y old) were recruited from around Chicago, USA. A personality inventory was administered, followed by pairwise comparisons of 6 health-state scenarios which asked each candidate to select their preferred choice. Health-state descriptions were based on a simplified 3-dimension version of the EQ-5D (mobility, pain, depression, each with 3 levels). For 2 scenarios, the respondent's preferred choice was switched; if the respondent did not notice the switch they were considered "choice blind". Logistic regression evaluated the association of personality, gender, and age with choice blindness and health-state choice. RESULTS: Ninety-nine respondents were recruited (44% adults). Comparing adolescents to adults, there was no significant difference in the rate of illogical preferences (9% v. 12%) or in preferring dead to the worst health state (56% v. 64%) ( P > 0.05). Choice-blindness rates were significantly higher in adolescents (35%) than adults (9%) ( P < 0.01). The adjusted odds of choice blindness in adolescents was 6.6 (95% CI = 1.8 to 23.8; P = 0.004). Conscientiousness was significantly associated with health-state choice in 3 of the 6 models predicting health-state choice (using P < 0.1 as a threshold). CONCLUSIONS: The results of this exploratory study suggest it is feasible to conduct choice experiments in adolescents; however, adolescents are significantly more likely to demonstrate choice blindness. Psychological traits may be noteworthy predictors of health-state choices, with conscientiousness independently associated with several health-state choices.

TREATMENT AFTER ACUTE CORONARY SYNDROME: ANALYSIS OF PATIENT'S PRIORITIES WITH ANALYTIC HIERARCHY PROCESS.

BACKGROUND: Cardiovascular disease is one of the most common causes of death worldwide, with many individuals having experienced acute coronary syndrome (ACS). How patients with a history of ACS value aspects of their medical treatment have been evaluated rarely. The aim of this study was to determine patient priorities for long-term drug therapy after experiencing ACS. METHODS: To identify patient-relevant treatment characteristics, a systematic literature review and qualitative patient interviews were conducted. A questionnaire was developed to elicit patient's priorities for different characteristics of ACS treatment using Analytic Hierarchy Process (AHP). To evaluate the patient-relevant outcomes, the eigenvector method was applied. RESULTS: Six-hundred twenty-three patients participated in the computer-assisted personal interviews and were included in the final analysis. Patients showed a clear priority for the attribute "reduction of mortality risk" (weight: 0.402). The second most preferred attribute was the "prevention of a new myocardial infarction" (weight: 0.272), followed by "side effect: dyspnea" (weight: 0.165) and "side effect: bleeding" (weight: 0.117). The "frequency of intake" was the least important attribute (weight: 0.044). CONCLUSION: In conclusion, this study shows that patients strongly value a reduction of the mortality risk in post-ACS treatment. Formal consideration of patient preferences and priorities can help to inform a patient-centered approach, clinical practice, development of future effective therapies, and health policy for decision makers that best represents the needs and goals of the patient.

Experimental measurement of preferences in health care using best-worst scaling (BWS): theoretical and statistical issues.

For optimal solutions in health care, decision makers inevitably must evaluate trade-offs, which call for multi-attribute valuation methods. Researchers have proposed using best-worst scaling (BWS) methods which seek to extract information from respondents by asking them to identify the best and worst items in each choice set. While a companion paper describes the different types of BWS, application and their advantages and downsides, this contribution expounds their relationships with microeconomic theory, which also have implications for statistical inference. This article devotes to the microeconomic foundations of preference measurement, also addressing issues such as scale invariance and scale heterogeneity. Furthermore the paper discusses the basics of preference measurement using rating, ranking and stated choice data in the light of the findings of the preceding section. Moreover the paper gives an introduction to the use of stated choice data and juxtaposes BWS with the microeconomic foundations.

Experimental measurement of preferences in health and healthcare using best-worst scaling: an overview.

Best-worst scaling (BWS), also known as maximum-difference scaling, is a multiattribute approach to measuring preferences. BWS aims at the analysis of preferences regarding a set of attributes, their levels or alternatives. It is a stated-preference method based on the assumption that respondents are capable of making judgments regarding the best and the worst (or the most and least important, respectively) out of three or more elements of a choice-set. As is true of discrete choice experiments (DCE) generally, BWS avoids the known weaknesses of rating and ranking scales while holding the promise of generating additional information by making respondents choose twice, namely the best as well as the worst criteria. A systematic literature review found 53 BWS applications in health and healthcare. This article expounds possibilities of application, the underlying theoretical concepts and the implementation of BWS in its three variants: 'object case', 'profile case', 'multiprofile case'. This paper contains a survey of BWS methods and revolves around study design, experimental design, and data analysis. Moreover the article discusses the strengths and weaknesses of the three types of BWS distinguished and offered an outlook. A companion paper focuses on special issues of theory and statistical inference confronting BWS in preference measurement.

Making Good Decisions in Healthcare with Multi-Criteria Decision Analysis: The Use, Current Research and Future Development of MCDA.

Healthcare decision making is usually characterized by a low degree of transparency. The demand for transparent decision processes can be fulfilled only when assessment, appraisal and decisions about health technologies are performed under a systematic construct of benefit assessment. The benefit of an intervention is often multidimensional and, thus, must be represented by several decision criteria. Complex decision problems require an assessment and appraisal of various criteria; therefore, a decision process that systematically identifies the best available alternative and enables an optimal and transparent decision is needed. For that reason, decision criteria must be weighted and goal achievement must be scored for all alternatives. Methods of multi-criteria decision analysis (MCDA) are available to analyse and appraise multiple clinical endpoints and structure complex decision problems in healthcare decision making. By means of MCDA, value judgments, priorities and preferences of patients, insurees and experts can be integrated systematically and transparently into the decision-making process. This article describes the MCDA framework and identifies potential areas where MCDA can be of use (e.g. approval, guidelines and reimbursement/pricing of health technologies). A literature search was performed to identify current research in healthcare. The results showed that healthcare decision making is addressing the problem of multiple decision criteria and is focusing on the future development and use of techniques to weight and score different decision criteria. This article emphasizes the use and future benefit of MCDA.