scholarly journals Novel Approach for Visualizing Multiple Domains of Quality of Life Scales

2019 ◽  
Vol 12 (5) ◽  
Author(s):  
Nobuhiro Ikemura ◽  
Takehiro Kimura ◽  
Mitsuaki Sawano ◽  
Keiichi Fukuda ◽  
Seiji Takatsuki ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Novel Approach ◽  
Multiple Domains

scholarly journals Locked Out

2017 ◽  
Vol 26 (4) ◽  
pp. 555-576 ◽  
Author(s):  
VERONICA JOHANSSON ◽  
SURJO R. SOEKADAR ◽  
JENS CLAUSEN
Keyword(s):  
Quality Of Life ◽  
Moral Responsibility ◽  
Medical Condition ◽  
Persons With Disabilities ◽  
Social Barriers ◽  
Computer Interfaces ◽  
Novel Approach ◽  
Viable Solution ◽  
Key Issues

Abstract:Brain–computer interfaces (BCIs) can enable communication for persons in severe paralysis including locked-in syndrome (LIS); that is, being unable to move or speak while aware. In cases of complete loss of muscle control, termed “complete locked-in syndrome,” a BCI may be the only viable solution to restore communication. However, a widespread ignorance regarding quality of life in LIS, current BCIs, and their potential as an assistive technology for persons in LIS, needlessly causes a harmful situation for this cohort. In addition to their medical condition, these persons also face social barriers often perceived as more impairing than their physical condition. Through social exclusion, stigmatization, and frequently being underestimated in their abilities, these persons are being locked out in addition to being locked-in. In this article, we (1) show how persons in LIS are being locked out, including how key issues addressed in the existing literature on ethics, LIS, and BCIs for communication, such as autonomy, quality of life, and advance directives, may reinforce these confinements; (2) show how these practices violate the United Nations Convention on the Rights of Persons with Disabilities, and suggest that we have a moral responsibility to prevent and stop this exclusion; and (3) discuss the role of BCIs for communication as one means to this end and suggest that a novel approach to BCI research is necessary to acknowledge the moral responsibility toward the end users and avoid violating the human rights of persons in LIS.

Quality of life outcomes in sarcoma patients receiving care at a tertiary center.

2021 ◽  
Vol 39 (15_suppl) ◽  
pp. e23557-e23557
Author(s):  
Jonathan R. Day ◽  
Benjamin Miller ◽  
Sarah L. Mott ◽  
Bradley T. Loeffler ◽  
Munir Tanas ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Radiation Treatment ◽  
Soft Tissue Sarcomas ◽  
Well Being ◽  
Self Report ◽  
University Of Iowa ◽  
Treatment Type ◽  
Tertiary Center ◽  
Multiple Domains

e23557 Background: Sarcomas are a diverse group of neoplasms that vary greatly in clinical presentation and responsiveness to treatment. Given the differences in the sites of involvement, rarity, and treatment modality, a multidisciplinary approach is required. Previous literature suggests patients with sarcoma suffer from poorer quality of life (QoL) especially physical and functional well-being. This study aims to understand if there is an association between treatment at a tertiary sarcoma center and a difference in QoL. Methods: De-identified data was obtained from the Sarcoma Tissue Repository at University of Iowa. Mixed effects regression models were utilized to evaluate the association between disease and treatment characteristics and QoL. QoL was assessed using the self-report FACT-G questionnaire at 12-, 24-, and 36-months post-diagnosis; overall scores and the 4 well-being subscales (Physical, Emotional, Social, Functional) were calculated. Results: 443 patients were identified. Soft tissue sarcomas were more prevalent (87.6%) than bone (12.4%). 53% of patients received chemotherapy and 38.6% got radiation therapy. Sarcomas were most frequently located in the lower extremities(ext.) (33.1%), followed by abdomen (20.9%), pelvic (13.6%), upper ext. (13.1%), thorax (11.3%), head & neck (7.8%). For ext. sarcoma; lower ext: 144 (71.3%), Upper ext: 58 (28.7%). Patients with extremity sarcoma; 133 had limb sparing and 48 had amputations. FACT-G Scores did not appreciably vary between 12, 24-, and 36-month for any QoL responses. Overall well-being had a mean score reported of 87.7 (sd = 15.7). Social well-being sores averaged 23.5 (5.0). Emotional well-being (EWB) 19.2 (4.1) and functional well-being (FWB) 21.3 (6.1), and physical well-being (PWB) 23.7 (4.6). There was no association between overall, PWB, EWB, or FWB with the histological subtype, radiation treatment, type of limb surgery, or any location in the same patients over time. Chemotherapy treatments were associated with lower well-being in multiple domains; PWB scores being 2.01 points lower, (p < 0.01), EWB scores being 1.27 points lower (p = 0.01) and FWB scores being 1.72 (p = 0.03), and 4.44 points lower overall (p = 0.03), on average, after adjusting for overall changes across time. Patients with ext. sarcoma only overall FACT-G scores differed 6.72 points higher for upper ext. than lower ext (p = 0.04). Conclusions: Overall QoL areas were similar to normative FACT-G scores both overall and specific areas. Having received chemotherapy was associated with lower well-being scores physically, emotionally, functionally, and overall. There were no clinically relevant differences reported in QoL scores between 12-,24-, and 36-months in the same patients. Further work is needed to describe QoL differences among patients with sarcoma at tertiary centers and examine what protective factors may influence patient well-being.

scholarly journals The current trend of administering a patient-generated index in the oncological setting: a systematic review

2014 ◽  
Author(s):  
Jessica A. Tang ◽  
Taemin Oh ◽  
Justin K. Scheer ◽  
Andrew T. Parsa
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Current Trend ◽  
Free Form ◽  
Patient Generated Index ◽  
Novel Approach ◽  
Patient Reported ◽  
Assess Quality ◽  
In The Beginning

The patient-generated index (PGI) is a more novel approach to evaluating health-related quality of life (HRQOL) that allows patients to formulate their own responses in an open-ended format in order to measure HRQOL based on each patient’s own stated goals and expectations. To date the use of PGI in the setting of patients diagnosed with cancer remains relatively less common compared to other health conditions. This systematic review primarily aims to identify current literature in which PGI has been used as a tool to assess quality of life in cancer patients. A systematic review using the MEDLINE database from January 1990 to July 2013 was performed with the following search terms to identify the implementation of PGI in oncology settings: (PGI OR patient generated index OR patient-generated OR patient-reported OR patient generated OR patient reported) AND (cancer OR oncology OR tumor OR neoplasm OR malignancy). Of the 2167 papers initially identified, 10 papers evaluated quality of life in oncology patients by collecting free-form responses from the patient, 4 of which actually used PGI. An overarching theme observed in these studies highlighted the concerns mentioned by patients that were not targeted or detected by standardized quality of life measures. While implementing the PGI may require slightly more investment of resources in the beginning, the potential implications of allowing patients to characterize their quality of life on their own terms are tremendous.

scholarly journals A Novel Approach for the Reimbursement of Permanent Partial Dental Disability Following Dental Injury

2015 ◽  
Vol 16 (6) ◽  
pp. 504-506
Author(s):  
Edgar Nehme ◽  
Sami Jad
Keyword(s):  
Quality Of Life ◽  
Insurance Companies ◽  
Court System ◽  
Permanent Disability ◽  
Dental Injury ◽  
System A ◽  
Novel Approach ◽  
New Formula

ABSTRACT Reimbursement of long-term permanent disability following a dental injury can lead to claims and legal involvement by the injured person. This will delay the treatment the patient's quality of life and the court system. A new formula has been hypothesized to address the problem. This might help the stakeholders including patients, insurance companies. The details of calculating the index and its significance are discussed. Implication studies are mandatory to refine the proposed hypothesis. How to cite this article Ayoub F, Nehme E, Jad S, Salameh Z. A Novel Approach for the Reimbursement of Permanent Partial Dental Disability Following Dental Injury. J Contemp Dent Pract 2015;16(6):504-506.

Psychosocial Functioning and Quality of Life in Body Dysmorphic Disorder

2017 ◽  
Author(s):  
Megan M. Kelly ◽  
Megan E. Brault ◽  
Elizabeth R. Didie
Keyword(s):  
Quality Of Life ◽  
Psychosocial Functioning ◽  
Body Dysmorphic Disorder ◽  
Research Quality ◽  
Future Research ◽  
Social Avoidance ◽  
Major Depressive ◽  
Multiple Domains ◽  
Ability And Willingness

This chapter reviews the literature on quality of life and functional impairment in body dysmorphic disorder (BDD) and discusses important lines of future research. Quality of life and psychosocial functioning are often poor in individuals with BDD. This is the case across multiple domains, including social, occupational, academic, and physical functioning. BDD symptoms often directly interfere with a person’s ability and willingness to engage in activities of daily living. Individuals with BDD frequently have high levels of social avoidance, which interferes with the development and maintenance of relationships and involvement in social, work, and educational activities. Rates of unemployment and disability are high. Several clinical correlates of BDD are also associated with psychosocial functioning and quality of life—most notably, greater severity of BDD symptoms and comorbid major depressive disorder.

Quality of Life in Patients with Thalassemia.

Blood ◽  
2004 ◽  
Vol 104 (11) ◽  
pp. 3786-3786
Author(s):  
Zahra Pakbaz ◽  
Marsha Treadwell ◽  
Robert Yamashita2 ◽  
Drucilla Foote ◽  
Elliott Vichinsky
Keyword(s):  
Quality Of Life ◽  
Health Status ◽  
Thalassemia Major ◽  
Essential Information ◽  
Health Impairment ◽  
Severe Impairment ◽  
Multiple Domains ◽  
The Impact ◽  
Overall Health Status

Abstract Introduction: Thalassemia patients have experienced a dramatic increase in lifespan secondary to improved and more complicated therapy. The impact of the disease and its treatment on quality of life is largely unknown. Determining the degree of health impairment as perceived by the patient is essential information needed to recommend suitable therapy. Factors that affect the quality of life of thalassemia major patients may differ from thalassemia intermedia patients. Identifying the specific causes for negative patient assessment of overall health status can result in successful intervention. The objective of this study is to determine the factors that affect quality of life in both transfused and non-transfused thalassemia patients. Methods: The Dartmouth Care Cooperative Chart System (COOP) questionnaire is a standardized, validated, visual screening tool that screens the major domains affecting quality of life. Patients rate quality of life from excellent (1) to poor (5). Scores of 1 and 2 are normal. A Score of 3 are mild to moderate impairment, and 4 and 5 are severe abnormalities. 50 patients were randomly selected during a comprehensive visit to complete a COOP questionnaire. These results were augmented by a brief medical history and chart review. Results: Forty-eight thalassemia patients, including 25 transfusion dependent (Tx) and 23 non-transfused (Non-Tx) patients (50% female) were randomly selected and completed the COOP questionnaire. The mean age of the total population was 19 years (0.9–37.9 yrs) and was similar in both groups. Half of both groups had scores of 3 or less indicating no severe impairment. However, 56% of patients had ratings of 3 indicating mild to moderate impairment of major domains. Four patients (2 Tx, 2 Non-Tx) had repeated 4–5 ratings in multiple domains indicating severe impairment of quality of life. The most commonly reported affected domains were feelings, such as anxiety, depression, and concern of overall health status or indications of recent deterioration in health. Conclusion: At least 50% of transfusion and non-transfusion dependent thalassemia patients demonstrate some impairment in quality of life. Forty-four percent of the population had a severe impairment in at least one domain. In particular, mental health issues are widespread. In contrast to previous beliefs, non-transfusion dependent patients also suffer serious impairment in quality of life. This data suggests all patients should undergo quality of life assessments and intervention, which focuses on affected domains. Studies to determine if quality of life affects patients’ adherence to chelation therapy are needed.

A reflective evaluation of the Bradford positive behaviour support – in reach service

2020 ◽  
Vol 25 (4) ◽  
pp. 185-192
Author(s):  
Matthew Hodder ◽  
Tom Syson ◽  
Zobia Aziz ◽  
Anthony Handy ◽  
Hafsa Khan ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Young People ◽  
Third Sector ◽  
Service Evaluation ◽  
Improve Quality ◽  
Content Type ◽  
Novel Approach ◽  
Adolescent Mental Health Service ◽  
Positive Behaviour Support

Purpose Without effective support and intervention, young people with learning disabilities and severe challenging behaviour are at risk of placement in out-of-area residential settings or highly specialist child and adolescent mental health service (CAMHS) units. Such placements may be inappropriate and result in significant reductions to the quality of life of young people and their families. This paper aims to evaluate the effectiveness of the Bradford positive behaviour support (PBS) service model in terms of its aims to improve quality of life, develop skills and maintain children living with their families in their own homes. Design/methodology/approach A service evaluation using quantitative and qualitative data from a range of sources to review the effectiveness of the PBS model being applied in Bradford and Calderdale was the methodology used. Findings When consistently implemented, the Bradford positive behaviour support–in reach service may improve quality of life, facilitate skill development in young people and their carers and reduce placements in residential and CAMHS inpatient units. Avoidance of such placements is likely to reduce the overall costs of service commissioning in Bradford. Originality/value This paper evaluates a novel approach being applied by a third sector agency to implement effective PBS with a small group of children, their families and networks. There is scope for this model to be successfully implemented in other areas.

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