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.

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 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

Craniotomy for Resection of Pediatric Brain Tumors in the United States, 1988 to 2000: Effects of Provider Caseloads and Progressive Centralization and Specialization of Care

Neurosurgery ◽  
2004 ◽  
Vol 54 (3) ◽  
pp. 553-565 ◽  
Author(s):  
Edward R. Smith ◽  
William E. Butler ◽  
Fred G. Barker
Keyword(s):  
United States ◽  
Brain Tumor ◽  
Mortality Rate ◽  
Multivariate Analyses ◽  
Pediatric Brain Tumor ◽  
High Volume ◽  
The United States ◽  
Mortality Rates ◽  
Discharge Disposition ◽  
Pediatric Brain

Abstract OBJECTIVE Large provider caseloads are associated with better patient outcomes after many complex surgical procedures. Mortality rates for pediatric brain tumor surgery in various practice settings have not been described. We used a national hospital discharge database to study the volume-outcome relationship for craniotomy performed for pediatric brain tumor resection, as well as trends toward centralization and specialization. METHODS We conducted a cross sectional and longitudinal cohort study using Nationwide Inpatient Sample data for 1988 to 2000 (Agency for Healthcare Research and Quality, Rockville, MD). Multivariate analyses adjusted for age, sex, geographic region, admission type (emergency, urgent, or elective), tumor location, and malignancy. RESULTS We analyzed 4712 admissions (329 hospitals, 480 identified surgeons) for pediatric brain tumor craniotomy. The in-hospital mortality rate was 1.6% and decreased from 2.7% (in 1988–1990) to 1.2% (in 1997–2000) during the study period. On a per-patient basis, median annual caseloads were 11 for hospitals (range, 1–59 cases) and 6 for surgeons (range, 1–32 cases). In multivariate analyses, the mortality rate was significantly lower at high-volume hospitals than at low-volume hospitals (odds ratio, 0.52 for 10-fold larger caseload; 95% confidence interval, 0.28–0.94; P = 0.03). The mortality rate was 2.3% at the lowest-volume-quartile hospitals (4 or fewer admissions annually), compared with 1.4% at the highest-volume-quartile hospitals (more than 20 admissions annually). There was a trend toward lower mortality rates after surgery performed by high-volume surgeons (P = 0.16). Adverse hospital discharge disposition was less likely to be associated with high-volume hospitals (P < 0.001) and high-volume surgeons (P = 0.004). Length of stay and hospital charges were minimally related to hospital caseloads. Approximately 5% of United States hospitals performed pediatric brain tumor craniotomy during this period. The burden of care shifted toward large-caseload hospitals, teaching hospitals, and surgeons whose practices included predominantly pediatric patients, indicating progressive centralization and specialization. CONCLUSION Mortality and adverse discharge disposition rates for pediatric brain tumor craniotomy were lower when the procedure was performed at high-volume hospitals and by high-volume surgeons in the United States, from 1988 to 2000. There were trends toward lower mortality rates, greater centralization of surgery, and more specialization among surgeons during this period.

A randomized control intervention trial to improve social skills and quality of life in pediatric brain tumor survivors

2017 ◽  
Vol 27 (1) ◽  
pp. 91-98 ◽  
Author(s):  
Maru Barrera ◽  
Eshetu G. Atenafu ◽  
Lillian Sung ◽  
Ute Bartels ◽  
Fiona Schulte ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Brain Tumor ◽  
Social Skills ◽  
Pediatric Brain Tumor ◽  
Intervention Trial ◽  
Control Intervention ◽  
Randomized Control ◽  
Pediatric Brain
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