A Us Experience: Consumer Responsive Quality of Life Measurement

1998 ◽  
Vol 17 (S3) ◽  
pp. 41-52 ◽  
Author(s):  
Marion Becker
Keyword(s):  
Quality Of Life ◽  
Mental Health ◽  
United States ◽  
Mental Health Professionals ◽  
Social Relations ◽  
Well Being ◽  
The United States ◽  
Convenience Sample ◽  
Consumer Values

Objective: In the United States, interest in quality of life and social disabilities associated with mental illne intensified in the wake of the deinstitutionalization of the late '60s abd '70s. Although mental health professionals in the United States have begun to recognize the importance of quality of life considerations to patient management and treatment outcomes, review of the literature shows there is minimal research in mental health on this important topic. As a result, little theoretical or methodological progres has been made. Quality of life has not been clearly conceptulized or defined and there are no agreed-upon standards or criteria for measurement. This presentation will; (a) review important conceptual issues in quality of life research, (b) discuss the benefits of and obstacles to incorporating consumer values in judgments of quality of life, and (c) present data from Wisconsin Quality of Life Index (W-QLI; Becker et al., 1993) to illustrate the usefulness of a consumer responsive model of quality of life and the importance of incorporating consumer values in the assessment of quality of life of persons with schizophrenia. Methods: The W-QLI was administered to a convenience sample of psychiatric outpatients with a DSM-IV diagnosis of schizophrenia. The W-QLI is a self-administered individually preference-weighted index that measures nine separted domains encompassing quality of life. The W-QLI scoring method results in spearted scores for each domain and allows for the relationships among separate domains to be studied. The mine separted domains include; (a) satisfaction level for different objective quality of life indicators, (b) occupational activities, (c) psychological well-being,(d) physical health, (c) social relations, (f) economics, (g) activities of daily living, (h) symptoms, and (i) goal attainment. Results: study findings are consistent with previous theory and empirical domains. Results show that while consumers' and clinicians' judgments of outcome corelated, there were important differences. Clincians systematically rated functiion higher and social relations lower that did consumers, and there were significant differences in consumer and provider goals for improvement with treatment. Overall ratings of quality of life and funciton are only weakly correlated with psychopathology. The findings support the importance and feasibility of incorporating consumer values and judgments of quality of life in outcome measurement.

scholarly journals QOL-51. LISTENING BEFORE WE SPEAK: A PATIENT-CENTERED APPROACH TO DEVELOPING RESOURCES FOR PEDIATRIC BRAIN TUMOR SURVIVORS AND THEIR FAMILIES

2020 ◽  
Vol 22 (Supplement_3) ◽  
pp. iii440-iii440
Author(s):  
Kathy Riley
Keyword(s):  
Quality Of Life ◽  
Mental Health ◽  
United States ◽  
Brain Tumor ◽  
Mental Health Professionals ◽  
Pediatric Brain Tumor ◽  
The United States ◽  
Physical And Mental Health ◽  
Pediatric Brain

Abstract In the United States, more than 28,000 children and teenagers live with the diagnosis of a primary brain tumor (Porter, McCarthy, Freels, Kim, & Davis, 2010). In 2017, an estimated 4,820 new cases of childhood primary brain and other central nervous system tumors were expected to be diagnosed in children ages 0 – 19 in the United States (Central Brain Tumor Registry of the United States, 2017). Survivors suffer from lifelong side effects caused by their illness or by various treatments. Commonly identified late effects of treatment include a decline in intellectual functioning and processing speed, performance IQ deficits, memory deficits, psychological difficulties, deficits in adaptive functioning (daily life skills), and an overall decrease in health-related quality of life (Castellino, Ullrich, Whelen, & Lange, 2014). To address the ongoing challenges these survivors and their families face, the Pediatric Brain Tumor Foundation (PBTF) met extensively with working groups comprised of survivors and caregivers to develop the outline for a comprehensive Survivorship Resource Guidebook. In 2019, the PBTF published the guidebook which categorizes survivor and caregiver needs into three primary areas: physical and mental health, quality of life, and working the system. Expert authors included survivors and caregivers themselves in addition to medical and mental health professionals. Key outcomes discovered during the creation and production of this resource highlight how caregivers, survivors and professionals can collaborate to provide needed information and practical help to one segment of the pediatric cancer population who experience profound morbidities as a result of their diagnosis and treatment.

Quality of Life and the Carbon Footprint: A Zip-Code Level Study Across the United States

2021 ◽  
Vol 30 (4) ◽  
pp. 323-343
Author(s):  
Matthew Thomas Clement ◽  
Chad L. Smith ◽  
Tyler Leverenz
Keyword(s):  
Quality Of Life ◽  
United States ◽  
Carbon Footprint ◽  
Ecological Impact ◽  
Well Being ◽  
The United States ◽  
Alternative Measure ◽  
Level Data ◽  
Zip Code

Much sustainability scholarship has examined the environmental dimensions of subjective and objective well-being. As an alternative measure of human well-being, we consider the notion of quality of life and draw on a framework from the sustainability literature to study its association with ecological impact, specifically the carbon footprint. We conduct a quantitative analysis, combining zip-code level data on quality of life and the carbon footprint per household for the year 2012 across the continental United States ( n=29,953). Findings consistently show a significant, negative association between quality of life and the carbon footprint. Our findings point to the potential advantages of utilizing robust objective measures of quality of life that extends beyond economic well-being and life expectancy alone. Furthermore, our findings question the conventional wisdom that sustainability requires sacrifices, while suggesting opportunities for how increased levels of sustainability may be achieved while retaining high levels of quality of life.

scholarly journals COST, RESOURCE UTILIZATION, QUALITY OF LIFE, MENTAL HEALTH, AND FINANCIAL TOXICITY AMONG YOUNG ADULTS WITH STROKE IN THE UNITED STATES

2020 ◽  
Vol 75 (11) ◽  
pp. 1838
Author(s):  
Javier Valero Elizondo ◽  
Rohan Khera ◽  
Farhaan Vahidy ◽  
Haider Warraich ◽  
Shiwani Mahajan ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Mental Health ◽  
United States ◽  
Young Adults ◽  
Resource Utilization ◽  
The United States ◽  
Financial Toxicity

scholarly journals Optimal Well-Being After Major Depression

2019 ◽  
Vol 7 (3) ◽  
pp. 621-627 ◽  
Author(s):  
Jonathan Rottenberg ◽  
Andrew R. Devendorf ◽  
Vanessa Panaite ◽  
David J. Disabato ◽  
Todd B. Kashdan
Keyword(s):  
Mental Health ◽  
United States ◽  
Major Depression ◽  
Mental Health Professionals ◽  
Health Professionals ◽  
Well Being ◽  
The United States ◽  
Global Burden ◽  
Leverage Points ◽  
Midlife Development

Can people achieve optimal well-being and thrive after major depression? Contemporary epidemiology dismisses this possibility, viewing depression as a recurrent, burdensome condition with a bleak prognosis. To estimate the prevalence of thriving after depression in United States adults, we used data from the Midlife Development in the United States study. To count as thriving after depression, a person had to exhibit no evidence of major depression and had to exceed cutoffs across nine facets of psychological well-being that characterize the top 25% of U.S. nondepressed adults. Overall, nearly 10% of adults with study-documented depression were thriving 10 years later. The phenomenon of thriving after depression has implications for how the prognosis of depression is conceptualized and for how mental health professionals communicate with patients. Knowing what makes thriving outcomes possible offers new leverage points to help reduce the global burden of depression.

scholarly journals Impact of the COVID-19 Pandemic on Nephrology Fellow Training and Well-Being in the United States: A National Survey

2021 ◽  
pp. ASN.2020111636
Author(s):  
Kurtis A. Pivert ◽  
Suzanne M. Boyle ◽  
Susan M. Halbach ◽  
Lili Chan ◽  
Hitesh H. Shah ◽  
...  
Keyword(s):  
Quality Of Life ◽  
United States ◽  
Training Programs ◽  
Well Being ◽  
The United States ◽  
Work Life ◽  
Work Life Balance ◽  
Life Balance ◽  
Preparedness For Practice

BackgroundThe coronavirus disease 2019 (COVID-19) pandemic’s effects on nephrology fellows’ educational experiences, preparedness for practice, and emotional wellbeing are unknown.MethodsWe recruited current adult and pediatric fellows and 2020 graduates of nephrology training programs in the United States to participate in a survey measuring COVID-19’s effects on their training experiences and wellbeing.ResultsOf 1005 nephrology fellows-in-training and recent graduates, 425 participated (response rate 42%). Telehealth was widely adopted (90% for some or all outpatient nephrology consults), as was remote learning (76% of conferences were exclusively online). Most respondents (64%) did not have in-person consults on COVID-19 inpatients; these patients were managed by telehealth visits (27%), by in-person visits with the attending faculty without fellows (29%), or by another approach (9%). A majority of fellows (84%) and graduates (82%) said their training programs successfully sustained their education during the pandemic, and most fellows (86%) and graduates (90%) perceived themselves as prepared for unsupervised practice. Although 42% indicated the pandemic had negatively affected their overall quality of life and 33% reported a poorer work-life balance, only 15% of 412 respondents who completed the Resident Well-Being Index met its distress threshold. Risk for distress was increased among respondents who perceived the pandemic had impaired their knowledge base (odds ratio [OR], 3.04; 95% confidence interval [CI], 2.00 to 4.77) or negatively affected their quality of life (OR, 3.47; 95% CI, 2.29 to 5.46) or work-life balance (OR, 3.16; 95% CI, 2.18 to 4.71).ConclusionsDespite major shifts in education modalities and patient care protocols precipitated by the COVID-19 pandemic, participants perceived their education and preparation for practice to be minimally affected.

Online Well-Being Focused Curriculums

2017 ◽  
pp. 1415-1429
Author(s):  
Michelle Lee D'Abundo ◽  
Stephen L. Firsing III ◽  
Cara Lynn Sidman
Keyword(s):  
Public Health ◽  
Quality Of Life ◽  
United States ◽  
Medical Model ◽  
Well Being ◽  
Health Behavior Change ◽  
The United States ◽  
Health Issues ◽  
Health Related

Education and health are among the most salient issues facing Americans today. The field of public health has moved away from a physical health medical model to a more well-being focused quality-of-life perspective. K-20 curriculums in the United States need to reflect this ideological shift. In this chapter, content-focused curriculums with process-focused health behavior change-oriented learning are proposed as a strategy to promote well-being. Other issues that need to be addressed in the current education system are that the delivery of health-related curriculums is often inconsistent and taught by untrained personnel. Well-being-focused curriculums delivered online can provide consistency to improve the quality of health courses. This innovative approach has the potential to improve educational and health outcomes for K-20 curriculums while addressing public health issues by promoting well-being and quality-of-life for children and adults throughout the United States.

Head and Neck Cancer in a Rural U.S. Population: Quality of Life, Coping, Health Care Literacy, and Access to Services

2021 ◽  
pp. 1-18
Author(s):  
Shawn M. Lowe ◽  
Christina V. Nobriga
Keyword(s):  
Quality Of Life ◽  
United States ◽  
Head And Neck Cancer ◽  
Health Literacy ◽  
Rural Communities ◽  
Head And Neck ◽  
Neck Cancer ◽  
The United States ◽  
Convenience Sample

Purpose The aim of this study was to explore the beliefs, access, and motivations of individuals with head and neck cancer (HNC) living in a rural community in the United States, regarding their speech and swallowing deficits. Method A convenience sample of nine patient participants with HNC and nine caregiver participants completed in-depth, semistructured interviews regarding their experiences with HNC diagnosis and treatment. The researchers utilized a thematic networks approach to analyze the qualitative data obtained. Results Primary results of the study were a set of common themes emerging from 735 units for analysis, arranged into 34 basic themes, nine organizing themes, and four global themes. The resulting networks centered around quality of life impact, coping, health literacy, and access. Direct quotes from the participants are utilized to illustrate response categories. Conclusions Individuals with HNC and their caregivers living in rural communities in the United States appear to represent a unique subset of the HNC population. While they present similarly in most areas, they display unique tendencies in the areas of psychological coping, health literacy, and access. Provision of practical, pertinent information that can be accessed by patients and caregivers alike outside the hospital is suggested to better serve this community.

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