Quality of Life for People with Disabilities: Why Applied Behavior Analysts Should Consider This a Primary Dependent Variable

2021 ◽  
pp. 154079692110336
Author(s):  
Ilene S. Schwartz ◽  
Elizabeth M. Kelly
Keyword(s):  
Quality Of Life ◽  
Applied Behavior Analysis ◽  
Natural Science ◽  
Behavioral Interventions ◽  
Outcome Variable ◽  
Intellectual And Developmental Disabilities ◽  
Effective Interventions ◽  
Behavior Analysts ◽  
Ultimate Outcome

Applied behavior analysis (ABA) is a natural science dedicated to using behavioral principles to address socially important problems. One area in which behavior analysts have made compelling gains in the last 50 years is in developing, evaluating, and disseminating effective interventions for people with significant intellectual and developmental disabilities. As the science of ABA has matured, many practitioners, researchers, and consumers have questioned how our field should define appropriate outcomes of behavioral interventions. In this article, we propose that improved quality of life should be the ultimate outcome for consumers receiving behavioral interventions. We explore definitions of quality of life and suggest some strategies that behavior analysts can apply to modify practices to more clearly center quality of life as an outcome variable.

scholarly journals Adherence to Therapy, Physical and Mental Quality of Life in Patients with Multiple Sclerosis

2021 ◽  
Vol 11 (7) ◽  
pp. 672
Author(s):  
Alessandra Buja ◽  
Guendalina Graffigna ◽  
Simona F. Mafrici ◽  
Tatjana Baldovin ◽  
Carlo Pinato ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Behavioral Interventions ◽  
Positive Association ◽  
Cross Sectional Study ◽  
Health Index ◽  
Online Questionnaire ◽  
Cross Sectional ◽  
Adherence To Therapy

Ensuring multiple sclerosis (MS) patients’ adherence to therapy is often challenging, but it is crucial to their survival and health-related quality of life (HRQoL). The aim of the present study was to outline connections between adherence, physical and mental HRQoL, levels of psychological readiness to engage in a treatment, levels of social support, anthropometric, socio-demographic and clinical factors in patients suffering from MS. This cross-sectional study involved a sample of 237 Italian MS patients. A survey was conducted with a structured self-administered online questionnaire using validated measures of quality of life, adherence to therapy and anthropometric, socio-demographic, psychological and clinical variables. A path analysis was used to test the overall structure of the associations between the variables. The pathway indicates a positive association between mental health index and a stronger degree of engagement and being or having been in a long-term relationship. Physical health index was positively associated with age, having an occupation, and having a specific form of MS. Having had relapses in the previous year raised the odds of better adherence to therapy, while an increase in Body Mass Index (BMI) reduced them. Our findings could help in the management of MS patients, promoting behavioral interventions that take the psychological and socio-demographic peculiarities of each patient into account with a view to improving their adherence to therapy.

scholarly journals Thoracoscopic Ablation with Appendage Ligation versus Medical Therapy for Stroke Prevention a Proof-of-Concept Randomized Trial

2016 ◽  
Vol 11 (2) ◽  
pp. 99-105 ◽  
Author(s):  
Thomas M. Beaver ◽  
Vishnumurthy Shushrutha Hedna ◽  
Anna Y. Khanna ◽  
William M. Miles ◽  
Catherine C. Price ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Medical Management ◽  
Stroke Prevention ◽  
Normal Sinus Rhythm ◽  
Recurrent Stroke ◽  
Outcome Variable ◽  
Concept Design ◽  
Proof Of Concept ◽  
Surgical Morbidity

Objective Atrial fibrillation (AF) has a demonstrable effect on quality of life (QOL). Recurrent stroke occurs in 10% of patients with AF. The objective of this study was to demonstrate proof of concept that thoracoscopic pulmonary vein isolation and atrial appendage ligation (TPVIAL) could prevent recurrent stroke and could potentially improve QOL in patients with AF with a previous stroke. Methods The study was a National Institutes of Health-funded single-center proof-of-concept design that randomized 23 patients with AF-related stroke to TPVIAL (n = 12) or to medical management (n = 11). Quality of life was the primary outcome variable; secondary end points included restoration of rhythm, recurrent stroke, and surgical morbidity. Results Quality-of-life subscores at 3 and 6 months revealed improvements in energy and decreases in fatigue in the TPVIAL arm [baseline, 33 (19.8); 3 months, 49.5 (20.6), P = 0.01; 6 months, 55.5 (14.4), P = 0.03]. At 12-month follow-up, there were no recurrent strokes in the TPVIAL group. In the medically treated arm, two patients at 6 months (P = 0.22) and three total patients at 12 months (P = 0.09) had recurrent ischemic stroke. There was one death in the medical management arm. In the TPVIAL arm, no AF recurrence occurred in patients with paroxysmal AF, and one patient had recurrence of persistent and long-standing AF. Seven patients in the TPVIAL arm discontinued warfarin therapy for secondary stroke prevention. Conclusions This small proof-of-concept study showed that TPVIAL improved QOL on two subscores and restored normal sinus rhythm in all but one patient, and it showed the potential to prevent secondary stroke. A larger study will be needed.

scholarly journals Quality of Life in Bipolar Type I Disorder in a One-Year Followup

2012 ◽  
Vol 2012 ◽  
pp. 1-11 ◽  
Author(s):  
Homayoun Amini ◽  
Vandad Sharifi
Keyword(s):  
Quality Of Life ◽  
World Health ◽  
Outcome Variable ◽  
Short Version ◽  
Assessment Procedure ◽  
Type I ◽  
Bipolar I Disorder ◽  
One Year ◽  
Bipolar Patients

Objectives. The aims of this study were (i) to compare Quality of Life (QOL) of patients with bipolar disorder (BD) type I to those with schizophrenia during a one-year period after hospitalization and (ii) to assess the association of different domains of QOL with severity of clinical symptoms and level of functioning in bipolar patients group.Method. A hundred and two participants were consecutively recruited before discharge from an acute hospitalization. To measure QOL as the main outcome variable, the Farsi (Persian) version of the World Health Organization's QOL Instrument Short Version (WHOQOL BREF) was used. Affective symptoms, overall functioning, and severity of mental illness were assessed as well. The assessment procedure was repeated four, eight, and 12 months after discharge.Results. No significant differences were found between patients with BD and schizophrenia on four domains of WHOQOL BREF at the baseline and the four, eight, and 12 month assessments. Within the subjects with bipolar I disorder, the most stable finding was negative association of depression severity with WHOQOL-BREF on the all four domains during repeated assessments.Conclusion. The findings suggest that persistent depressive symptoms might be the primary determinant of impaired QOL in patients with bipolar I disorder.

scholarly journals Quality of life as an outcome variable in the management of advanced cancer

2010 ◽  
Vol 31 (4) ◽  
pp. 121 ◽  
Author(s):  
Manisha Bisht ◽  
SS Bist ◽  
DC Dhasmana ◽  
Sunil Saini
Keyword(s):  
Quality Of Life ◽  
Advanced Cancer ◽  
Outcome Variable

scholarly journals Assistive Technology and Cognitive-Behavioral Programs for Promoting Adaptive Skills of Persons with Alzheimer Disease: A Selective Review

2018 ◽  
Vol 2 (3) ◽  
pp. 14-29
Author(s):  
Viviana Perilli ◽  
Fabrizio Stasolla ◽  
Stefania Maselli ◽  
Isabel Morelli
Keyword(s):  
Quality Of Life ◽  
Alzheimer Disease ◽  
Assistive Technology ◽  
Challenging Behavior ◽  
Behavioral Interventions ◽  
Challenging Behaviors ◽  
Cognitive Behavioral ◽  
Adaptive Responding

Background: Person with Alzheimer Disease may present cognitive, social, communication, physical, and orientation impairments. Furthermore, individuals with Alzheimer Disease may exhibit challenging behavior, isolation, and passivity. Objectives: To emphasize the role of Assistive Technology-based interventions and Cognitive-Behavioral Programs to improve the independence, and the quality of life of patients with Alzheimer Disease. To assess the effects on teaching adaptive responding, and decreasing challenging behaviors. Method: A selective literature review was carried out considering Alzheimer, Assistive Technology, Cognitive-Behavioral Programs, Adaptive Responding, Challenging Behaviors, and Quality of life as keywords. Twenty-six studies were reviewed. Results: Empirical data demonstrated the effectiveness, and the suitability of the selected interventions, although few failures occurred. The participants involved significantly increased their adaptive responding during the intervention phases, and maintained their performance over the time. Conclusion: Assistive Technology-based rehabilitative programs and Cognitive-Behavioral Interventions may be helpful for promoting the independence and the quality of life of individuals with Alzheimer Disease.

scholarly journals Living with Metastatic Cancer: A Roadmap for Future Research

Cancers ◽  
2020 ◽  
Vol 12 (12) ◽  
pp. 3684
Author(s):  
Danielle B. Tometich ◽  
Kelly A. Hyland ◽  
Hatem Soliman ◽  
Heather S. L. Jim ◽  
Laura Oswald
Keyword(s):  
Quality Of Life ◽  
Survival Time ◽  
Behavioral Interventions ◽  
Metastatic Cancer ◽  
Chronic Phase ◽  
Future Research ◽  
Psychological Resilience ◽  
Novel Treatments ◽  
Patient Reported

Living with metastatic cancer, or metavivorship, differs from cancer survivorship and has changed as novel treatments have increased survival time. The purpose of this narrative review is to describe factors that impact challenges in metavivorship within a conceptual framework to guide future research. This review focuses on the specific metavivorship outcomes of progressive disease, survival time, symptoms, distress, financial toxicity, and quality of life. We describe the predisposing, precipitating, and perpetuating (3P) model of metavivorship. Understanding the biological, psychological, and social 3P factors that contribute to the development and maintenance of challenges in metavivorship provides a roadmap for future research. Implications of this model include prevention by targeting predisposing factors, management of precipitating factors after onset of metastatic disease, and treatment of perpetuating factors to reduce symptoms and improve quality of life during the chronic phase of metavivorship. This can be accomplished through biopsychosocial screening efforts, monitoring of patient-reported outcomes, education and communication interventions, interdisciplinary symptom management, advance care planning, and behavioral interventions to cultivate psychological resilience.

scholarly journals The Spanish Family Quality of Life Scales under and over 18 Years Old: Psychometric Properties and Families’ Perceptions

2020 ◽  
Vol 17 (21) ◽  
pp. 7808
Author(s):  
Anna Balcells-Balcells ◽  
Joana M. Mas ◽  
Natasha Baqués ◽  
Cecilia Simón ◽  
Simón García-Ventura
Keyword(s):  
Quality Of Life ◽  
Factor Analysis ◽  
Psychometric Properties ◽  
Family Quality Of Life ◽  
Intellectual And Developmental Disabilities ◽  
Validity And Reliability ◽  
Confirmatory Factor ◽  
Spanish Family ◽  
Families With Children

Background: Family quality of life (FQoL), just like individual quality of life, has become a priority outcome in the policies and services received by persons with intellectual and developmental disabilities (IDD) and their families. Conceptualizing, measuring, and theorizing FQoL has been the object of investigation in recent decades. The goal of this paper is to present a revision of the Spanish Family Quality of Life Scales, the CdVF-E < 18 and the CdVF-E >18, and describe the FQoL of Spanish families with a member with IDD. Methods: The sample included a total of 548 families with a member under 18 years old and 657 families with a member over 18. Based on an Exploratory Factor Analysis (EFA) firstly and a Confirmatory Factor Analysis (CFA) secondly, the two scales’ psychometric properties were explored. Results: The CdVF-ER < 18 and the CdVF-ER > 18 comprise 5 dimensions, containing 35 and 32 items, respectively, and they show good validity and reliability. The families obtained a high FQoL score, although some differences exist between the dimensions on which families with children under and over 18 score highest and lowest. Conclusion: The characteristics of the revised scales facilitate their use by professionals, administrations, and services.

Promoting stigma coping and empowerment: Results from the multi-center clinical trial STEM

2016 ◽  
Vol 33 (S1) ◽  
pp. S40-S40
Author(s):  
W. Gaebel
Keyword(s):  
Quality Of Life ◽  
Group Therapy ◽  
Therapeutic Approach ◽  
Health Care Services ◽  
Psychiatric Rehabilitation ◽  
Psychiatric Inpatient ◽  
Outcome Variable ◽  
Outpatient Services ◽  
Education Group

IntroductionThe stigma of mental illness is still a major challenge for psychiatry. For patients, stigma experiences and self-stigma are associated with reduced quality of life and increased vulnerability to a more chronicle illness course. Nevertheless, there is a scarcity of validated therapeutic approaches addressing strategies for coping with stigma.Objectives and aimsA manualized psycho-educational group therapy for stigma coping and empowerment (STEM) should be tested for efficacy in patients with depression and schizophrenia. The study was funded by a research grant of the Federal Ministry of Education and Research.MethodsA cluster-randomized RCT with two arms including 30 mental health care services (psychiatric inpatient services, day-units, and outpatient services, as well as inpatient psychiatric rehabilitation services) was conducted. The intervention consisted of 8 sessions regular psycho-education group therapy and 3 sessions addressing stigma coping and empowerment. Controls received 11 sessions regular psycho-education. Primary outcome variable was quality of life (WHO-QOL). Assessments were conducted directly before and after the intervention, and at 3, 6 and 12 months follow-ups.ResultsA total of 469 patients participated and more than 300 participants (approx. 65%) completed the 12-month follow-up. First results of the analysis will be presented at the conference.ConclusionsSince the statistical analysis is currently in progress, no conclusions concerning the efficacy of the tested therapeutic approach can be done by now. Nevertheless there is a strong need for supporting patients in developing positive stigma coping strategies. STEM is the first therapeutic approach to our knowledge tested for efficacy in a RCT.Disclosure of interestThe author has not supplied his declaration of competing interest.

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