Existing Quality Of Life Measures Research Articles

Development and validation of a measure of adolescent and young adult goal-based quality of life (MAYA-GQOL).

We developed and validated a measure assessing quality of life (QOL) through importance, attainability, and discrepancy of life goals among adolescents and young adults (AYA) with and without cancer. A specific goal-based QOL measure for AYA fills a critical gap in knowledge for AYA who are at a unique life stage, which may include shifts in priorities and goals. Through review of our existing AYA databases on goals, the literature, and cognitive interviews we developed the MAYA-GQOL. Items were administered to AYA with cancer (on/off treatment) (n = 124) and healthy AYA controls (n = 103) aged 15-29years old. Psychometric analyses for comparison with existing QOL measures and discrepancies in perceived importance/attainability of goals were examined. An item pool of 700 goals, based on prior research, was refined to 173 goals across nine categories: academic, administrative, body, health, job, leisure, interpersonal, intrapersonal, and religion. Validation between the MAYA-GQOL and existing QOL measures was supported. AYA survivors reported fewer overall current goals and fewer administrative, interpersonal, leisure, and religious goals. AYA survivors rated body goal importance significantly higher than healthy controls and intrapersonal goal importance significantly lower. Little discrepancy in importance and attainability across AYA was found. The MAYA-GQOL represents an innovative way of measuring QOL among AYA by focusing on the relative importance, attainability, and discrepancy of developmentally appropriate goals. The MAYA-GQOL can identify areas of resilience and competence via assessment of important and attainable goals and can further assess how AYA with chronic illness are functioning relative to peers on goal domains relevant to the AYA developmental period.

Diabetes-Related Quality of Life: Learning From Individuals Making Lifestyle Changes to Improve Type 2 Diabetes Control.

The purpose of this study was to explore how treatment adherence and lifestyle changes required for glycemic control in type 2 diabetes (T2D) are related to quality of life (QoL) among predominantly ethnic minority and socioeconomically disadvantaged adults engaged in making changes to improve T2D self-management. Adults with T2D in New York City were recruited for the parent study based on recent A1C (≥7.5%) and randomly assigned to 1 of 2 arms, receiving educational materials and additional self-management support calls, respectively. Substudy participants were recruited from both arms after study completion. Participants (N = 50; 62% Spanish speaking) were interviewed by phone using a semistructured guide and were asked to define QoL and share ways that T2D, treatment, self-management, and study participation influenced their QoL. Interviews were analyzed using thematic analysis. QoL was described as a multidimensional health-related construct with detracting and enhancing factors related to T2D. Detracting factors included financial strain, symptom progression and burden, perceived necessity to change cultural and lifestyle traditions, and dietary and medical limitations. Enhancing factors included social support, diabetes education, health behavior change, sociocultural connection. QoL for diverse and socioeconomically disadvantaged adults with T2D is multifaceted and includes aspects of health, independence, social support, culture, and lifestyle, which may not be captured by existing QoL measures. Findings may inform the development of a novel QoL measure for T2D.

The value of immunotherapy for survivors of stage IV non-small cell lung cancer: patient perspectives on quality of life

PurposeThe aim of this study was to examine what personally mattered to 24 patients who received immuno-oncology (IO) therapy for stage IV non-small cell lung cancer (NSCLC), as well as their families and friends, to understand how they evaluated their cancer treatments and the determinants of the quality of life (QoL) of long-term survivors.MethodsEthnographic research was conducted with 24 patients who had responded to IO (pembrolizumab, nivolumab, atezolizumab, or durvalumab) for stage IV NSCLC, and their families and friends, evenly split among field sites in Denmark, the USA, and the UK. Data were collected using in-depth qualitative interviews, written exercises, and participant observation. Data analysis methods included interpretative phenomenological analysis, coding, and the development of grounded theory. Researchers spent 2 days with participants in their homes and accompanied them on health-related outings.ResultsOur findings reveal that long-term survivors on IO experienced their journey in two phases: one in which their cancer had taken over their lives mentally, physically, and spiritually, and another in which their cancer consumed only a part of their everyday lives. Patients who survived longer than their initial prognosis existed in a limbo state in which they were able to achieve some semblance of normalcy in spite of being identified as having a terminal condition. This limbo state impacted their life priorities, decision-making, experience of patient support, and health information-seeking behaviors, all of which shaped their definitions and experience of QoL.ConclusionsThe results of this study, which identify the specific challenges of living in limbo, where patients are able to reclaim a portion of their pre-cancer lives while continuing to wrestle with a terminal prognosis, may inform how cancer research can more effectively define and measure the QoL impacts of IO treatments. Also, they may identify approaches that the cancer community can use to support the needs of patients living in a limbo state. These experiences may not be adequately understood by the cancer community or captured by existing QoL measures, which were designed prior to the emergence of IO and without sufficient incorporation of contextual, patient-driven experience.Implications for Cancer SurvivorsIncreased awareness of the specific experiences that come with long-term survival on IO may direct how resources should be spent for cancer support for patients and their families. Expanding how QoL is evaluated based on patients’ lived experiences of IO can reflect a more accurate depiction of the treatment’s benefits and harms.

Individualisation of glaucoma quality of life measures: a way forward?

Glaucoma is a slow progressive condition that adversely affects quality of life (QoL). According to the European Glaucoma Society, ‘ the goal of glaucoma treatment is to maintain the patient’s...

Measuring quality of life in muscular dystrophy.

The objectives of this study were to develop a conceptual model of quality of life (QOL) in muscular dystrophies (MDs) and review existing QOL measures for use in the MD population. Our model for QOL among individuals with MD was developed based on a modified Delphi process, literature review, and input from patients and patient advocacy organizations. Scales that have been used to measure QOL among patients with MD were identified through a literature review and evaluated using the COSMIN (Consensus-Based Standards for the Selection of Health Measurement Instruments) checklist. The Comprehensive Model of QOL in MD (CMQM) captures 3 broad domains of QOL (physical, psychological, and social), includes factors influencing self-reported QOL (disease-related factors, support/resources, and expectations/aspirations), and places these concepts within the context of the life course. The literature review identified 15 QOL scales (9 adult and 6 pediatric) that have been applied to patients with MD. Very few studies reported reliability data, and none included data on responsiveness of the measures to change in disease progression, a necessary psychometric property for measures included in treatment and intervention studies. No scales captured all QOL domains identified in the CMQM model. Additional scale development research is needed to enhance assessment of QOL for individuals with MD. Item banking and computerized adaptive assessment would be particularly beneficial by allowing the scale to be tailored to each individual, thereby minimizing respondent burden.

Bowel management related quality of life in people with multiple sclerosis: Psychometric evaluation of the QoL-BM measure

BackgroundBowel dysfunction affects quality of life (QoL) of multiple sclerosis (MS) patients. Existing QoL measures specific to MS disease contain little or no assessment of bowel dysfunction. The Quality of Life Scoring Tool Relating to Bowel Management (QoL-BM) developed for spinal cord injured patients may be relevant for MS patients. ObjectiveDetermine reliability and validity of the QoL-BM scale with MS patients. MethodThe North American Research Committee on Multiple Sclerosis randomly selected 700 MS patients from their registry resulting in 502 respondents who completed the QoL-BM scale, Bowel Function Questionnaire for MS persons (Constipation, Fecal Incontinence, both Constipation and Fecal Incontinence), Patient Derived Disease Steps (mild, moderate, severe disability), MS classification (Relapsing-Remitting MS, Secondary Progressive MS), and demographic sheet. ResultsFactor analysis of the QoL-BM scale resulted in two subscales: Management and Relationships. Reliability coefficients for total and subscales were: .90, .86, and .83, respectively. Known-group validity was demonstrated as QoL-BM total scale and subscale scores differed significantly according to type of bowel dysfunction and disability level. ConclusionThe QoL-BM scale provides information on current bowel status and its impact on QoL for MS patients.

Which measure of quality of life performs best in older age? A comparison of the OPQOL, CASP-19 and WHOQOL-OLD

BackgroundMost measures of quality of life (QoL) are based on ‘expert’ opinions. This study describes a new measure of QoL in older age, the Older People's QoL Questionnaire (OPQOL), which...

Disregarding clinical trial-based patient-reported outcomes is unwarranted: Five advances to substantiate the scientific stringency of quality-of-life measurement

Background. The clinical impact of trial-based quality of life (QL) outcomes is frequently underestimated due, in part, to prejudice and lack of knowledge by the medical community. The objectives of this paper are to show that QL assessments build upon an empirically based and stringent approach to measurement and QL outcomes should not be viewed nor handled differently than any other parameter in medical research. Material and methods. Literature overview. Results. The objectives are substantiated with empirical evidence showing that: (1) existing QL measures are as reliable as most other clinical outcomes; (2) available guidelines improve the quality of trial-based QL data; (3) QL data have strong prognostic value for survival; (4) clinical significance of QL data can be established; and (5) accounting for response-shift effects in QL data over time is feasible. Finally, the investigation of the genetic disposition of QL is described as an emerging area of research. Discussion. It is a waste of effort and money and also unethical when collected trial-based QL data are not used to their full power. QL and other patient-reported outcomes deserve to be included in more trials, with full disclosure of all results, and standardized interpretation. Only the combined use of patient-reported and clinical outcomes will enable the examination of the extent to which cancer patients live a qualitatively good life as long as possible.

Treatment impact on estimated medical expenditure and job loss likelihood in rheumatoid arthritis: re-examining quality of life outcomes from a randomized placebo-controlled clinical trial with abatacept

Quality of life (QoL) improvement is important to demonstrate in RA clinical trials, but can be abstract. More meaningful measures of QoL include medical expenditure and job loss, aspects that have marked importance for RA patients, physicians and society. We re-examined previous positive QoL findings for abatacept over placebo by converting existing QoL measures into estimated medical expenditure and estimated likelihood of job loss. Two double-blind, placebo-controlled, multicentre randomized clinical trials were undertaken: one for MTX failure (n = 652) and one for more severe anti-TNF failure patients (n = 391). Based on derived scores using previously published formulae, measures of monthly medical expenditure, current inability to work and job loss at 6 months, 1 yr and 2 yrs were analysed. Abatacept led to greater reduction in medical expenditure over time in MTX failure ($152 lower) and anti-TNF failure patients ($122 lower) compared with placebo at end-point. Likewise, significantly more reduction in likelihood for current and future job loss was achieved with abatacept compared with placebo, which has 25-64% greater likelihood. QoL changes provided greater reduction in medical expenditure and likelihood of an inability to work. The strong effect sizes obtained for all significant analyses suggest that the results are clinically meaningful. Moreover, given the nature of the variables, results should also be meaningful for patients, physicians, employers and health care insurance entities. Limitations are discussed regarding using estimated outcomes rather than analysis of actual outcomes.

Health-related quality of life in patients with progressive supranuclear palsy.

We assessed health-related quality of life (QoL) of patients with progressive supranuclear palsy (PSP), identified the most important QoL issues in patients with this disorder, and assessed the usefulness of existing QoL measures in patients with PSP. Twenty-seven patients in all stages of PSP and their carers underwent a semistructured in-depth interview on the impact of PSP and a neurological examination. They were also asked to complete existing measures of QoL and depression. An item-pool of issues relevant to QoL of patients with PSP was created from the patient and carer interviews. Carers and patients largely agreed on issues relevant for patients' QoL but more carers than patients considered symptoms of frontal lobe dysfunction as problematic for the patients. There was no association of QoL with age and gender, as assessed in interviews and on two QoL instruments. QoL deteriorated with increasing disease duration and severity and greater cognitive impairment and was associated with worse depression scores. While the generic SF-36 was not found to be useful to assess QoL in PSP, feasibility and validity for the PDQ-39 and the EQ-5D were acceptable in this study. However, additional issues relevant to patients with PSP that were not addressed in these instruments included visual disturbances, dysarthria, dysphagia, muddled thinking, confusion, and apathy. The generic EQ-5D and the Parkinson's disease-specific PDQ-39 are useful instruments to assess QoL in patients with PSP. However, they lack questions on important aspects of QoL in PSP that were reported by patients and carers in semistructured interviews. The item pool created in these interviews provides the basis for the development of disease-specific QoL instruments for patients with PSP.

Quality of Life measures for dementia

Over the past 10 years, several instruments developed specifically for the assessment of Quality of Life (QOL) in dementia have been introduced. The goal of the current review is to present, compare, and critique existing QOL measures for dementia populations to assist investigators and clinicians in selecting the optimal inventory for their specific needs. Nine measures are reviewed with a focus on conceptualizations of QOL, psychometric data, targeted patient population, and administration and scoring procedures. Critical discussion and comparison of the instruments is presented after the scales are described individually. Differences in definitions of QOL, assessment procedures, and methods that were used to establish the validity of instruments are highlighted. An important direction for future research on QOL scales for dementia is to establish their responsiveness to change over time. It will also be important to identify factors that affect reports of QOL, determine the how perceived QOL affects decisions regarding the care of dementia patients, and evaluate interventions to increase patient QOL.

PMA1: METHODOLOGICAL ADVANCES IN THE ASSESSMENT OF QUALITY OF LIFE IN CLINICAL TRIALS

Pharmaceutical science has moved away from focusing exclusively on the impact of medications on physiological parameters to a focus that includes the subject's quality of life (QoL). To date, QoL assessment has relied exclusively on global summaries that ask subjects to recall, summarize, and evaluate their subjective QoL. New science-based methods using handheld technology to gather QoL data can lead to more valid, reliable, and timely QoL data. Many of the components of QoL, from subjective well-being to objective functioning, derive from an interest in understanding a subject's daily and momentary experiences. Rather than relying on broad summaries of experience, a ‘bottoms-up’ approach to QoL assessment directly measures subjects' momentary QoL in real-time, in the real-world. Until recently, researchers did not have an efficient way to collect valid momentary QoL data from subjects in their natural environment. Recent methodological advances in the science of patient experience, termed Ecological Momentary Assessment (EMA), make it possible to collect real-time QoL data from subjects using electronic patient experience diaries. This ‘bottoms-up’ approach using EMA methods extends existing QoL measures by providing a unique perspective on the extent to which subjects' evaluations of various moments in their lives reflect QoL changes over time. Recent empirical evidence suggests that this ‘bottoms-up’ approach may enhance the sensitivity of QoL assessment in clinical trials. The new perspective EMA provides on momentary patient experience represents a promising methodological advancement in the study of QoL. In combination with standard written assessments of QoL, EMA data can provide a new perspective on the relationship between medication effects and QoL.

Quality of life and neurological illness: a review of the literature.

This article highlights some of the conceptual and methodological problems associated with quality of life (QoL) measurement in individuals with neurological illness. It is suggested that these problems have contributed to the underdeveloped status of QoL research in neurological settings. Many of the existing QoL measures that have been used, or show potential for use with individuals with neurological illness, are reviewed in terms of their theoretical basis, content, and practicality. A large proportion of these measures fail to meet adequate psychometric standards and/or have rarely been psychometrically tested. The confusion that surrounds adequate psychometric standards is discussed, and the dynamic nature of QoL is highlighted as a factor that requires further attention. Research addressing the discrepancies between proxy and patient ratings of patient QoL is also warranted. More focused research in these areas may contribute to a clearer understanding of how to assess QoL in individuals with neurological illness.