Quality Of Life In Practice Research Articles

Symptom Adverse Events and Quality of Life of Children With Advanced Cancer: Results From a Longitudinal Study Using the Pediatric Patient-Reported Outcomes-Common Terminology Criteria for Adverse Events.

Background: The presence of poorly controlled symptoms negatively impacts the quality of life (QoL) throughout cancer treatment. The purpose of this multisite study was to explore the relationship between QoL and symptom adverse events (AEs) in children with advanced cancer over 6 months. Method: A prospective and longitudinal descriptive study design was used to collect QoL and symptom AE data from children aged 2 to 18 with advanced cancer. QoL was measured using the Pediatric Quality of Life Inventory (PedsQLTM) Cancer Module 3.0 and symptom AEs were measured using the Pediatric Patient-Reported Outcome-Common Terminology Criteria for AEs (PRO-CTCAEs®). Descriptive statistics were used to describe QoL and symptom AE data. Correlational analyses and generalized linear mixed models were used to examine the relationship between symptom AEs and QoL. Results: Forty-nine children participated in the study. The mean total PedsQLTM score was 73.86 for the sample across all time points. Children diagnosed with a central nervous system (CNS) tumor reported poorer QoL compared to children diagnosed with a hematologic malignancy or non-CNS solid tumor. Symptom frequency AEs of anxiety, pain, nausea, insomnia, hot flashes, and fatigue severity demonstrated the strongest and most significant negative correlation with total QoL scores. Analyses of the relationship between QoL and symptom AEs over time revealed time-specific significant differences with children who experienced frequency AEs of nausea, and anxiety reporting poorer QoL at time point 4 (week 8). Discussion: The Ped PRO-CTCAE® and PedsQLTM can be used to evaluate the relationship between symptom AEs and QoL in practice and in future research.

Quality of life and home parenteral nutrition: a survey of UK healthcare professionals' knowledge, practice and opinions.

There is increasing interest in the assessment of health-related quality of life (QoL) in the care of patients treated with home parenteral nutrition (HPN). However, it is not known whether healthcare professionals (HCPs) have embedded QoL assessment into routine clinical practice in line with current guidelines to favour a more holistic approach to HPN care. The aim of this study was to assess knowledge, current practice and the opinions of HCPs regarding QoL in care of patients on HPN. An online survey was distributed via email to HCPs working with HPN patients throughout England, Scotland, Wales and Northern Ireland. Participants were identified using a mailing list for the British Intestinal Failure Alliance, a specialist group within the British Association for Parenteral and Enteral Nutrition. The survey was completed by 67 professionals comprising 24 dietitians, 17 nurses, 14 gastroenterologists, 6 pharmacists, 5 surgeons and 1 psychologist. Of these, 54 (80%) participants agreed that the measurement of QoL is useful. In contrast, 38 (57%) of all participants, including 27 (50%) of those participants who agreed that the measurement of QoL was useful, never measured QoL. Knowledge of QoL literature was rated as poor or very poor by 27 (40%) participants. Despite the perceived usefulness and importance of QoL assessment, very few HCPs embed it into clinical practice. Knowledge of QoL literature and QoL tools is variable, and there is significant variability in QoL practice. This is clear in terms of the frequency of QoL assessments and heterogeneity in methodology. In contrast, there was almost unanimous agreement that the complications associated with HPN contribute to poorer QoL. There is a need for specific, evidence-based, clinical practice guidelines detailing how to define and measure QoL in this patient population.

Chiropractors’ Perspectives on the Meaning and Assessment of Quality of Life Within Their Practice in New Zealand: An Exploratory Qualitative Study

ObjectiveThe purpose of this study was to gain an understanding on what quality of life (QOL) and its assessment means to chiropractors in everyday practice. MethodsThis study captured chiropractors’ perspectives on the QOL construct and its assessment using a qualitative descriptive methodology that comprised 2 focus groups, each with 4 participants using semi-structured, open-ended questioning. Participants from Aotearoa, New Zealand, were also asked to evaluate 4 QOL patient-reported outcome measurements from a clinical perspective. ResultsTwo of the participants were faculty at the New Zealand College of Chiropractic, 5 were in full-time practice, and 1 was practicing part time. Using qualitative content analysis, 3 main themes were identified. These chiropractors perceived that patients have misconceptions about how chiropractic can affect QOL. They lacked clarity in communicating QOL and its related concepts to establish a clinically meaningful patient encounter. Finally, there is uncertainty in how and when to measure QOL, which appears to affect how they discuss and assess QOL in practice. ConclusionThere is a complex combination of factors that makes communication regarding QOL challenging. This exploratory qualitative study helps to understand the challenges faced in how and when to communicate and assess QOL more effectively in chiropractic practice.

Practitioners' Perspectives on Quality of Life in Aphasia Rehabilitation in Denmark

Objective: This study reports on Danish speech and language therapists' knowledge and understanding of quality of life (QoL) in aphasia, including therapists' views on education and training in relation to preparedness for working on QoL, use of measures, and barriers to applying QoL in practice. Methods: Fourteen Danish clinicians completed a 48-item online questionnaire regarding their views, perspectives and practices that included multiple-choice questions, rating scales, and boxes permitting free text responses. Descriptive statistics were used to characterize the numerical data, and content analysis was applied to text responses. Results: The clinicians interpreted QoL as subjective well-being and participation and explored it with most clients and relatives using informal methods, primarily conversation, for the purposes of identifying relevant goals to direct treatment. Clinicians perceived a need for greater theoretical, practical, and experiential knowledge regarding QoL. They also identified a need for translated QoL instruments and training in these measures in practice. Conclusion: Despite a reported lack of knowledge about and tools for measuring QoL, Danish clinicians are applying QoL issues in their practice and perceive these issues as valuable and important in assessment and therapy. The findings have clear implications for tool development and workforce education.

Subsistence fishing in a 21st century capitalist society: From commodity to gift

In this paper, we examine the extent, range, and diversity of noncommercial wild ocean seafood subsistence harvests among commercial operators in Washington and California, USA and test the relationship between subsistence drivers and market behavior. Analyzing data from Pacific Fisheries Information Network between 1990 and 2010, we show that over 17millionkg of fish and shellfish were kept for personal use. We used general additive models to examine patterns in proportion of personal use versus price for the top 10 species retained over the 20-year period for each of the three population groups: Washington commercial tribal (indigenous) fishing operators, Washington commercial nontribal operators, and California commercial fishing operators. Out of the 26 species-price relationships tested, only one fits the market relationship with statistical significance and the model failed to predict personal use patterns for any of the other species. We conclude that market sensitivity is not a reliable predictor for subsistence behavior. Although a nominal figure in the overall seafood catch, the presence of subsistence practices among 21st century market-based commercial fishing operators reveals a more diverse array of economic systems than previously imagined. We suggest that alternative economies, including subsistence and associated community share systems, function to improve human wellbeing and strengthen community resilience by increasing food security and community food systems, engaging in a quality of life practice, and supporting social networks through seafood gifting and sharing.

Measurement of Quality of Life III. From the IQOL Theory to the Global, Generic SEQOL Questionnaire

The Danish Quality of Life Survey is based on the philosophy of life known as the integrative quality-of-life (IQOL) theory. It consists of eight different quality-of-life concepts, ranging from the superficially subjective via the deeply existential to the superficially objective (well being, satisfaction with life, happiness, meaning in life, biological order, realizing life potential, fulfillment of needs, and objective factors [ability of functioning and fulfilling societal norms]).This paper presents the work underlying the formulation of the theories of a good life and how these theories came to be expressed in a comprehensive, multidimensional, generic questionnaire for the evaluation of the global quality of life — SEQOL (self-evaluation of quality of life) — presented in full length in this paper. The instruments and theories on which the Quality of Life Survey was based are constantly being updated. It is an on-going process due to aspects such as human development, language, and culture. We arrived at eight rating scales for the quality of life that, guided by the IQOL theory, were combined into a global and generic quality-of-life rating scale. This was simplified to the validated QOL5 with only five questions, made for use in clinical databases. Unfortunately, the depth of human existence is to some extent lost in QOL5.We continue to aim towards greater simplicity, precision, and depth in the questions in order to explore the depths of human existence. We have not yet found a final form that enables us to fully rate the quality of life in practice. We hope that the several hundred questions we found necessary to adequately implement the theories of the Quality of Life Survey can be replaced by far fewer; ideally, only eight questions representing the eight component theories. These eight ideal questions have not yet been evaluated, and therefore they should not form the basis of a survey. However, the perspective is clear. If eight simple questions can accurately rate the quality of life as well as its depth, we have found an instrument of immense practical scope.