There is a lack of preference-based health-related quality of life (HRQoL) measures that consistently value health across a full range of child age groups. The PedsQL is a generic HRQoL instrument ...validated for children 2-18 years, but it is not preference-based. The objective of this study was to derive the PedsUtil health state classification system from the PedsQL as a basis for a preference-based HRQoL measure for children. A two-step process was used to select PedsQL items to include in the health state classification system: 1) exclude poorly functioning items according to Rasch analysis in each of the previously established seven dimensions of the PedsUtil health state classification system and 2) select a single item to represent each dimension based on Rasch and psychometric analyses, as well as input from child health experts and parents. All secondary analyses were conducted using data from the Longitudinal Study of Australian Children (LSAC). Analyses were stratified by age group (i.e., 2-5 years, 6-13 years, and 14-17 years) to represent the different developmental stages of children and to reflect the study design of the LSAC. Rasch analyses were also performed on five random subsamples for each age group to enhance robustness of results. Twelve items were excluded from the PedsUtil health state classification system after the first step of the item selection process. An additional four items were excluded in the second step, resulting in seven items that were selected to represent the seven dimensions of the PedsUtil health state classification system: Physical Functioning ("participating in sports activity or exercise"), Pain ("having hurts or aches"), Fatigue ("low energy level"), Emotional Functioning ("worrying about what will happen to them"), Social Functioning ("other kids not wanting to be their friend"), School Functioning ("keeping up with schoolwork"), and School Absence ("missing school because of not feeling well"). The PedsUtil health state classification system was derived from the PedsQL based on several criteria and was constructed to be applicable to children two years and older. Research is ongoing to elicit preferences for the PedsUtil health state classification system to construct the PedsUtil scoring system.
Depression, Self-Care, and Medication Adherence in Type 2 Diabetes
Relationships across the full range of symptom severity
Jeffrey S. Gonzalez , PHD 1 ,
Steven A. Safren , PHD 1 ,
Enrico Cagliero , ...MD 2 ,
Deborah J. Wexler , MD 2 ,
Linda Delahanty , MS, RD 2 ,
Eve Wittenberg , PHD 3 ,
Mark A. Blais , PSYD 4 ,
James B. Meigs , MD, MPH 5 and
Richard W. Grant , MD, MPH 5
1 Behavioral Medicine, Department of Psychiatry, Massachusetts General Hospital and Harvard Medical School, Boston, Massachusetts
2 Diabetes Unit, Department of Medicine, Massachusetts General Hospital and Harvard Medical School, Boston, Massachusetts
3 Institute for Technology Assessment, Massachusetts General Hospital and Harvard Medical School, Boston, Massachusetts
4 Department of Psychiatry, Massachusetts General Hospital and Harvard Medical School, Boston, Massachusetts
5 General Medicine Division, Department of Medicine, Massachusetts General Hospital and Harvard Medical School, Boston, Massachusetts
Address correspondence and reprint requests to Jeffrey S. Gonzalez, PhD, Department of Psychiatry, WACC 812, Massachusetts
General Hospital, 15 Parkman St., Boston, MA 02114. E-mail: jsgonzalez{at}partners.org
Abstract
OBJECTIVE —We examined the association between depression, measured as either a continuous symptom severity score or a clinical disorder
variable, with self-care behaviors in type 2 diabetes.
RESEARCH DESIGN AND METHODS —We surveyed 879 type 2 diabetic patients from two primary care clinics using the Harvard Department of Psychiatry/National
Depression Screening Day Scale (HANDS), the Summary of Diabetes Self-Care Activities, and self-reported medication adherence.
RESULTS —Of the patients, 19% met the criteria for probable major depression (HANDS score ≥9), and an additional 66.5% reported at
least some depressive symptoms. After controlling for covariates, patients with probable major depression reported significantly
fewer days' adherent to diet, exercise, and glucose self-monitoring regimens ( P < 0.01) and 2.3-fold increased odds of missing medication doses in the previous week (95% CI 1.5–3.6, P < 0.001) compared with all other respondents. Continuous depressive symptom severity scores were better predictors of nonadherence
to diet, exercise, and medications than categorically defined probable major depression. Major depression was a better predictor
of glucose monitoring. Among the two-thirds of patients not meeting the criteria for major depression (HANDS score <9, n = 709), increasing HANDS scores were incrementally associated with poorer self-care behaviors ( P < 0.01).
CONCLUSIONS —These findings challenge the conceptualization of depression as a categorical risk factor for nonadherence and suggest that
even low levels of depressive symptomatology are associated with nonadherence to important aspects of diabetes self-care.
Interventions aimed at alleviating depressive symptoms, which are quite common, could result in significant improvements in
diabetes self-care.
HANDS, Harvard Department of Psychiatry/National Depression Screening Day Scale
SDSCA, Summary of Diabetes Self-Care Activities Questionnaire
SMBG, self-monitoring of blood glucose
Footnotes
Published ahead of print at http://care.diabetesjournals.org on 29 May 2007. DOI: 10.2337/dc07-0158.
J.B.M. has received research grants from GlaxoSmithKline, Wyeth, and sanofi-aventis and serves on safety or advisory boards
for GlaxoSmithKline, Merck, and Lilly.
A table elsewhere in this issue shows conventional and Système International (SI) units and conversion factors for many substances.
The costs of publication of this article were defrayed in part by the payment of page charges. This article must therefore
be hereby marked “advertisement” in accordance with 18 U.S.C Section 1734 solely to indicate this fact.
Accepted May 24, 2007.
Received January 25, 2007.
DIABETES CARE
Health state descriptions used to describe hypothetical scenarios in community-perspective utility surveys commonly omit detail on the time of onset of a condition, despite our knowledge that among ...patients who have a condition, experience affects the value assigned to that condition. The debate regarding whose values to use in cost utility analysis is based in part on this observed difference between values depending on the perspective from which they are measured. This research explores the effect on community preferences for hypothetical health states of including the time of onset of a health condition in the health state description, to investigate whether this information induces community respondents to provide values closer to those of patients with experience with a condition. The goal of the research is to bridge the gap between patient and community preferences.
A survey of community-perspective preferences for hypothetical health states was conducted among a convenience sample of healthy adults recruited from a hospital consortium's research volunteer pool. Standard gambles for three hypothetical health states of varying severity were compared across three frames describing time of onset: six months prior onset, current onset, and no onset specified in the description. Results were compared within health state across times of onset, controlling for respondent characteristics known to affect utility scores. Sub-analyses were conducted to confirm results on values meeting inclusion criteria indicating a minimum level of understanding and compliance with the valuation task.
Standard gamble scores from 368 completed surveys were not significantly different across times of onset described in the health state descriptions regardless of health condition severity and controlling for respondent characteristics. Similar results were found in the subset of 292 responses that excluded illogical and invariant responses.
The inclusion of information on the time of onset of a health condition in community-perspective utility survey health state descriptions may not be salient to or may not induce expression of preferences related to disease onset among respondents. Further research is required to understand community preferences regarding condition onset, and how such information might be integrated into health state descriptions to optimize the validity of utility data. Improved understanding of how the design and presentation of health state descriptions affect responses will be useful to eliciting valid preferences for incorporation into decision making.
Abstract Purpose Best-worst scaling (BWS) is a survey method for assessing individuals' priorities. It identifies the extremes—best and worst items, most and least important factors, biggest and ...smallest influences—among sets. In this article, we demonstrate an application of BWS in a primary care setting to illustrate its use in identifying patient priorities for services. Methods We conducted a BWS survey in 2014 in Boston, Massachusetts, to assess the relative importance of 10 previously identified attributes of Papanicolaou (Pap) testing services among women experiencing homelessness. Women were asked to evaluate 11 sets of 5 attributes of Pap services, and identify which attribute among each set would have the biggest and smallest influence on promoting uptake. We show how frequency analysis can be used to analyze results. Results In all, 165 women participated, a response rate of 72%. We identified the most and least salient influences on encouraging Pap screening based on their frequency of report among our sample, with possible standardized scores ranging from + 1.0 (biggest influence) to —1.0 (smallest influence). Most important was the availability of support for issues beyond health (+0.39), while least important was the availability of accommodations for personal hygiene (—0.27). Conclusions BWS quantifies patient priorities in a manner that is transparent and accessible. It is easily comprehendible by patients and relatively easy to administer. Our application illustrates its use in a vulnerable population, showing that factors beyond those typically provided in health care settings are highly important to women in seeking Pap screening. This approach can be applied to other health care services where prioritization is helpful to guide decisions.
Background. Problematic alcohol use is known to harm individuals surrounding the drinker. This study described the health utility of people who reported having a family member(s) whom they perceived ...as a “problem drinker.”Methods. We conducted a secondary analysis of the US National Epidemiologic Survey of Alcohol and Related Conditions Wave 3 (NESARC-III, 2012–13) data to estimate the independent associations of a family member’s problem drinking on the respondent’s health utility, also known as health-related quality of life, assessed via the SF-6D. Participants included 29,159 noninstitutionalized adults, of whom 21,808 reported perceiving a family member or members as having a drinking problem at any point in that person’s life. Respondent drinking was assessed via self-report and diagnostic interview. We used population-weighted multivariate regression to estimate disutility. Results. After adjusting for the respondent’s own alcohol consumption, alcohol use disorder (AUD), family structure, and sociodemographic characteristics, the mean decrement in SF-6D score associated with perceiving a family member as a problem drinker ranged from 0.033 (P < 0.001) for a spouse/partner to 0.023 (P < 0.001) for a grandparent, sibling, aunt, or uncle. The mean decrement in SF-6D score from having AUD oneself was 0.039 (P < 0.001). Conclusions. Perceived problem drinking within one’s family is associated with statistically significant losses in health utility, the magnitude of which is dependent on relationship type. The adverse consequences associated with problem drinking in the family may rival having AUD oneself. Implications. Family-oriented approaches to AUD interventions may confer outsize benefits, especially if focused on the spouse or partner. Economic evaluation of alcohol misuse could be made more accurate through the inclusion of family spillover effects.
Highlights
Spillover effects from problem drinking in the family vary by relationship type.
One’s perception of their spouse or child as having a drinking problem is associated with a utility decrement of equal magnitude to having alcohol use disorder oneself.
Medical decision makers should consider the outsize effects of family spillovers in treatment decisions in the context of alcohol consumption, particularly among spouses and children of problem drinkers.
Economic evaluation should consider how to incorporate family spillover effects from problem drinking in alcohol-related models.
Abstract Background Little is known about the opinions of primary care clinicians regarding the newly released 2013 American College of Cardiology/American Heart Association (ACC/AHA) Guidelines for ...the Prevention of Primary and Secondary Atherosclerotic Disease. This survey was created to assess the awareness, attitudes, and practices of primary care clinicians on adoption of the new guidelines and to explore obstacles to implementation and suggestions for improving shared decision-making. Methods Six hundred practicing clinicians within the San Francisco Bay Area Collaborative Research Network were invited to participate in this cross-sectional, Internet-based pilot survey of primary care clinicians. These survey data were collected in March 2014, approximately 4 months after the release of the new guidelines and 1 month after the release of the ACC/AHA risk estimator application. Results One hundred eighty-three clinicians responded to the survey. Of those respondents, 176 (96%) were aware of the guidelines. The majority (64%) reported implementing the new guidelines with at least some of their patients, while a minority (25%) reported adopting the guidelines for many of their patients. Disagreeing with the guidelines was the main hindrance to adoption. Conclusions While many primary care clinicians are aware of the new guidelines, a substantial proportion has yet to implement them into their clinical practice, and obstacles remain for full adoption. Further understanding of clinicians' views, opinions, and needs is necessary to optimize the approach to lipid management and ensure integration into current practice.
Abstract As part of a survey of about vaccination beliefs, a nationally representative sample of parents of young children answered a series of tradeoff questions that asked them to choose between ...two vaccination approaches that differed in terms of risks of vaccine complications, number of injections, and/or vaccine effectiveness. Most parents were willing to have their children endure more injections, and many were willing to forgo disease protection, in order to reduce the rare chance of febrile seizures. Yet, most parents were unwilling to trade disease protection to reduce the risk of fever alone, even though this is correlated with the risk of febrile seizures. Vaccine risk communications need to address the heightened emotional weight that parents give to febrile seizure risk, even when the rarity of such events is explicit.
Background
Alcohol consumption has changed during the COVID-19 pandemic yet the impacts on alcohol-related outcomes, and specifically health-related quality of life, are not completely known. Our ...objective was to assess the association between alcohol consumption and health-related quality of life (HRQOL) during the COVID-19 pandemic.
Method
We conducted an on-line/telephone survey of three cross-sectional samples of US adults during a nine-month stretch of the pandemic, from August 2020 through April 2021, collecting data on drinking—current quantity/frequency and change since prior to pandemic, HRQOL (using the SF-6D), and perceived impact of the pandemic on respondents’ lives—overall impact and disruptions across various dimensions (job loss, school closures, social isolation, loss of income). We pooled the data from the three administrations and applied survey weights to reflect the US population. We described drinking behavior and pandemic impact, and regressed HRQOL on alcohol consumption risk level (per World Health Organization categories), change in drinking since pre-pandemic, and pandemic impact using weighted least squares, controlling for respondents’ demographic characteristics. We tested the significance of categorical variables using Wald tests at a p-value of 0.05.
Results
Among 3,125 respondents, weighted to reflect the US population, 68% reported drinking during the pandemic and 40% reported a change in drinking from pre-pandemic level (either increased or decreased). Mean HRQOL among our sample was 0.721 (SD 0.003). Any change in drinking from pre-pandemic level was independently associated with significantly lower HRQOL compared to never drinking (pre or during pandemic), from − 0.0251 points for decreased/stopped drinking to -0.0406 points for increased drinking (combined levels’ Wald test
F
= 10.62, p < 0.0000). COVID-19 pandemic related impacts/disruptions were associated with HRQOL decrements ranging from − 0.0834 to -0.1340 (Wald test
F
= 64.34, p < 0.0000).
Conclusion
The US population HRQOL was substantially lower during the pandemic than reported a decade earlier (mean = 0.79 in 2012-13). While pandemic-related impacts and disruptions may explain a large part of this decrement, changes in drinking—and the associated implications of such changes–might also play a role. Both individuals who reduced their drinking during the pandemic and those who increased consumption may be at risk of poor HRQOL.
Plain english summary
The COVID-19 pandemic has precipitated changes in drinking that may be positive or negative depending on who is affected and how. We conducted a survey of over 3,000 adults in the US during the middle of the pandemic to understand drinking and quality of life. We found that US adults’ quality of life was worse during the pandemic than in prior years, and people who either increased or decreased the amount that they drank were particularly worse-off. People who reported being severely impacted by the pandemic, however, were also much worse-off in terms of quality of life, and actually more so than people whose drinking habits changed. We need to pay attention to how drinking is connected to stressful events such as the pandemic, and make sure to attend to people who change their drinking in either direction as this may indicate underlying problems.
Abstract Background Although co-occurring conditions are common with substance use disorders (SUDs), estimation methods for joint health state utilities have not yet been tested in this context. ...Objectives To compare joint health state utility estimators in SUD to inform economic evaluation. Methods We conducted two Internet-based surveys of US adults to collect community perspective standard gamble utilities for SUD and common co-occurring conditions. We evaluated six conditions as they occur individually and four combinations of these as they occur in tandem. We applied joint utility estimators using the six individual conditions’ utilities to compare their performance relative to the observed combination states’ utilities. We assessed performance with bias (estimated utility minus observed utility) and root mean square error (RMSE). Results Using 3892 utilities from 1502 respondents, the minimum estimator was statistically unbiased (i.e., the 95% confidence interval included 0) for all combination states that we measured. The maximum estimator was unbiased for two states and the linear index and adjusted decrement estimators were unbiased for one state. The maximum estimator had the smallest RMSE for two combination states (back pain and prescription opioid misuse 0.0004 and injection crack and injection opioid use 0.0007); the linear index and minimum estimators had the smallest RMSE for one combination state each. The additive and multiplicative estimators had the largest RMSE for all states. Conclusions Our results demonstrate the usefulness of the minimum estimator in this context, and confirm the inadequacy of the additive and multiplicative estimators. Further research is needed to extend these results to other SUD states.
A symposium held at the 42nd annual Society for Medical Decision Making conference on October 26, 2020, focused on intergenerational decision making. The symposium covered existing research and ...clinical experiences using formal presentations and moderated discussion and was attended by 43 people. Presentations focused on the roles of pediatric patients in decision making, caregiver decision making for a child with complex medical needs, caregiver involvement in advanced care planning, and the inclusion of spillover effects in economic evaluations. The moderated discussion, summarized in this article, highlighted existing resources and gaps in intergenerational decision making in four areas: decision aids, economic evaluation, participant perspectives, and measures. Intergenerational decision making is an understudied and poorly understood aspect of medical decision making that requires particular attention as our society ages and technological advances provide new innovations for life-sustaining measures across all stages of the lifespan.
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