Purpose The PROMIS-29 v2.0 profile assesses pain intensity using a single 0-10 numeric rating item and seven health domains (physical function, fatigue, pain interference, depressive symptoms, ...anxiety, ability to participate in social roles and activities, and sleep disturbance) using four items per domain. This paper describes the development of physical and mental health summary scores for the PROMIS-29 v2.0. Method We conducted factor analyses of PROMIS-29 scales on data collected from two internet panels (n = 3000 and 2000). Results Confirmatory factor analyses provided support for a physical health factor defined by physical function, pain (interference and intensity), and ability to participate in social roles and activities, and a mental health factor defined primarily by emotional distress (anxiety and depressive symptoms). Reliabilities for these two summary scores were 0.98 (physical health) and 0.97 (mental health). Correlations of the PROMIS-29 v2.0 physical and mental health summary scores with chronic conditions and other health-related quality of life measures were consistent with a priori hypotheses. Conclusions This study develops and provides preliminary evidence supporting the reliability and validity of PROMIS-29 v2.0 physical and mental health summary scores that can be used in future studies to assess impacts of health care interventions and track changes in health over time. Further evaluation of these and alternative summary measures is recommended.
The quality of children’s life is important both as an investment in the future of our society and because children constitute an important group of themselves and deserve to experience well-being ...presently. Quality of life (QOL) has been conceptualized and studied in children for several decades, but with disparate approaches that have rarely been discussed jointly with application to children in general. Here we describe and critically examine the three main approaches to children’s QOL: health-related QOL (HRQOL), social indicators, and subjective well-being (SWB). Although this is not a review of instruments per se, we illustrate these approaches by describing their most prominent measures. Issues and opportunities in research on children’s QOL are then discussed related to conceptual clarity, content specification, range of experience, subjective and objective perspectives, development in childhood, reporting source, and malleability of QOL. Finally, directions for advancing children’s QOL are considered. We highlight the benefits of focusing on social indicators and SWB, rather than HRQOL, when representing this concept for children in general, the need for applying more sophisticated research strategies, and using QOL as a universal indicator of success whenever we intend to advance the well-being of children through intervention, programs, and policy.
•Children deserve to experience a good quality of life (QOL).•We examine three main approaches for understanding children’s QOL.•Issues and opportunities in research on children’s QOL are discussed.•We conclude social indicators and subjective well-being best capture children’s QOL.•QOL should be a universal indicator when we intend to advance well-being of children.
Objective
The association between diet quality, dietary behavior and health-related quality of life has been mostly examined in children and adolescents with specific chronic diseases. No systematic ...review has synthesized the influence of diet quality and dietary behavior on health-related quality of life in the general population of children and adolescents. The purpose of this study was to systematically review the primary studies that evaluated the association between diet quality, dietary behavior and health-related quality of life in the general population of children and adolescents and to synthesize the findings for the association.
Methods
A computer search in the databases of MEDLINE, EMBASE and PSYCINFO was performed to retrieve English language studies that were published from 1946 up to April 8, 2018. We also screened the PubMed-related articles and the reference lists of the existing relevant literature to identify other eligible studies. We synthesized the association between diet quality, dietary behavior and health-related quality of life using both a qualitative method and meta-analysis. We reported the review following up the Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) guideline.
Results
Seventeen studies were included in the synthesis including twelve cross-sectional studies and five longitudinal studies. We found that diet quality and dietary behavior were associated with health-related quality of life in children and adolescents. The positive effect of healthy diets on health-related quality of life was observed for multiple domains of health-related quality of life, including physical, school and emotional functioning, and psychosocial quality of life. We observed a dose–response relationship between the diet exposure and health-related quality of life, where an unhealthy dietary behavior or lower diet quality was associated with decreased health-related quality of life among children and adolescents.
Conclusion
The findings of the systematic review suggest the importance of promoting healthy diets and nutrition for good health-related quality of life among children and adolescents. Future research is needed to strengthen the evidence for prospective relationships and for the dose–response effect between diet quality, dietary behavior and health-related quality of life among children and adolescents.
Purpose
Patient-reported outcome and experience measures (PROMs/PREMs) are well established in research for many health conditions, but barriers persist for implementing them in routine care. ...Implementation science (IS) offers a potential way forward, but its application has been limited for PROMs/PREMs.
Methods
We compare similarities and differences for widely used IS frameworks and their applicability for implementing PROMs/PREMs through case studies. Three case studies implemented PROMs: (1) pain clinics in Canada; (2) oncology clinics in Australia; and (3) pediatric/adult clinics for chronic conditions in the Netherlands. The fourth case study is planning PREMs implementation in Canadian primary care clinics. We compare case studies on barriers, enablers, implementation strategies, and evaluation.
Results
Case studies used IS frameworks to systematize barriers, to develop implementation strategies for clinics, and to evaluate implementation effectiveness. Across case studies, consistent PROM/PREM implementation barriers were technology, uncertainty about how or why to use PROMs/PREMs, and competing demands from established clinical workflows. Enabling factors in clinics were context specific. Implementation support strategies changed during pre-implementation, implementation, and post-implementation stages. Evaluation approaches were inconsistent across case studies, and thus, we present example evaluation metrics specific to PROMs/PREMs.
Conclusion
Multilevel IS frameworks are necessary for PROM/PREM implementation given the complexity. In cross-study comparisons, barriers to PROM/PREM implementation were consistent across patient populations and care settings, but enablers were context specific, suggesting the need for tailored implementation strategies based on clinic resources. Theoretically guided studies are needed to clarify how, why, and in what circumstances IS principles lead to successful PROM/PREM integration and sustainability.
Given the recent proliferation of the research on quality of life and wellbeing in tourism, we review this literature and provide guidance to spur future research. The review focuses on two major ...constituencies: residents of host communities and tourists. Specifically, the goals of this paper are (1) describe study findings, (2) highlight sampling and data collection methods, and (3) discuss issues of construct measurement. The vast majority of the studies related to these two constituencies show that tourism experiences and activities have a significant effect on both tourists' overall life satisfaction and wellbeing of residents. That is, tourists' experiences and tourism activities tend to contribute to positive affect in a variety of life domains such as family life, social life, leisure life, cultural life, among others. Future research is discussed in relation to these two constituencies.
•Quality of life (qol) and well-being research in tourism.•A short history of qol and tourism.•Tourism and qol from the perspective of community residents.•Tourism and qol from the perspective of community tourists.•Future research direction and areas.
Background Content validity is the most important measurement property of a patient-reported outcome measure (PROM) and the most challenging to assess. Our aims were to: (1) develop standards for ...evaluating the quality of PROM development; (2) update the original COSMIN standards for assessing the quality of content validity studies of PROMs; (3) develop criteria for what constitutes good content validity of PROMs, and (4) develop a rating system for summarizing the evidence on a PROM's content validity and grading the quality of the evidence in systematic reviews of PROMs. Methods An online 4-round Delphi study was performed among 159 experts from 21 countries. Panelists rated the degree to which they (dis)agreed to proposed standards, criteria, and rating issues on 5-point rating scales ('strongly disagree' to 'strongly agree'), and provided arguments for their ratings. Results Discussion focused on sample size requirements, recording and field notes, transcribing cognitive interviews, and data coding. After four rounds, the required 67% consensus was reached on all standards, criteria, and rating issues. After pilot-testing, the steering committee made some final changes. Ten criteria for good content validity were defined regarding item relevance, appropriateness of response options and recall period, comprehensiveness, and comprehensibility of the PROM. Discussion The consensus-based COSMIN methodology for content validity is more detailed, standardized, and transparent than earlier published guidelines, including the previous COSMIN standards. This methodology can contribute to the selection and use of high-quality PROMs in research and clinical practice.
Purpose After cancer treatment, it is desirable to maintain or regain a high quality of life (QoL) and the ability to accomplish everyday tasks well. Therefore, we substantiated the scarce knowledge ...regarding long-term QoL after breast cancer, burdensome problems, and unmet needs for more support. Methods Disease-free breast cancer survivors (n=190) who had participated in two randomized controlled exercise trials during primary treatment were followed up to 5 years post-diagnosis. QoL-related functions and symptoms (EORTC-QLQ-C30/-BR23), health problems, and support needs were assessed. EORTC-QLQ scores were compared with age-matched normative values from the general population in Germany. Results QoL-related functions and symptoms in patients during cancer treatment were worse compared to healthy references, but largely improved over time. Yet, cognitive function and sleep were still significantly impaired at 5-year follow-up. Other common long-term problems included sexual issues (45% of survivors), hot flashes (38%), pain (34%), fatigue (24%), and polyneuropathy (21%). Regression analyses indicated fatigue having the strongest impact on global QoL. Support needs were expressed mainly for menopausal disorders (43%), physical performance (39%), sleep problems (38%), arthralgia (37%), cognitive problems (36%), weight problems (32%), and fatigue (31%). Conclusions While QoL in disease-free breast cancer survivors 5 years post-diagnosis was largely comparable to the general population on average, still many survivors suffered from adverse effects. There appears to be a need for ongoing screening and support regarding fatigue, sleep problems, cognitive problems, arthralgia/pain, menopausal/sexual symptoms, physical performance, and weight problems during and several years following breast cancer therapy.
Aim
Examining health‐related quality of life (HRQoL) is important to improve patient care. In this study, we translate and evaluate the Finnish versions of the Food Allergy Specific Quality of Life ...Questionnaires (FAQLQs) from a Finnish perspective and undertake a detailed evaluation of the 10‐question Parent Form Questionnaire (FAQLQ‐PF10).
Methods
This validation study was performed to evaluate the Finnish versions of the FAQLQs. Validation was performed by analysing clinical characteristics, factor loadings and Cronbach's α reliability estimates. The inclusion criteria for participants in this study were having a doctor‐diagnosed food allergy or being a parent of a child with a doctor‐diagnosed food allergy and being able to answer the questionnaire in Finnish.
Results
Altogether, 247 questionnaires were completed in this study. Most of the respondents had multiple food allergies (77%, 189/247). Spearman's correlations related to the 10‐question parent form (FAQLQ‐PF10), the 30‐question parent form (FAQLQ‐PF) and the Food Allergy Severity Measurement‐Parent Form (FAIM‐PF) were statistically significant (p value = 0.000–0.007). The reliability of the Finnish versions of the FAQLQs measured by Cronbach's α was overall good (0.75–0.981).
Conclusion
The Finnish versions of the FAQLQs are reliable and suitable to use, and the FAQLQ‐PF10 has good usability.
Purpose
This systematic review was performed to identify all relevant health-related quality of life (HRQoL) issues associated with COVID-19.
Methods
A systematic literature search was undertaken in ...April 2020. In four teams of three reviewers each, all abstracts were independently reviewed for inclusion by two reviewers. Using a pre-defined checklist of 93 criteria for each publication, data extraction was performed independently by two reviewers and subsequently compared and discussed. If necessary, a third reviewer resolved any discrepancies. The search was updated in February 2021 to retrieve new publications on HRQoL issues including issues related to the long-term consequences of COVID-19.
Results
The search in April 2020 identified 3342 potentially relevant publications, and 339 publications were selected for full-text review and data extraction. We identified 75 distinct symptoms and other HRQoL issues categorized into 12 thematic areas; from general symptoms such as fever, myalgia, and fatigue, to neurological and psychological issues. The updated search revealed three extra issues experienced during active disease and long-term problems with fatigue, psychological issues and impaired cognitive function.
Conclusion
This first comprehensive systematic review provides a detailed overview of the wide range of HRQoL issues experienced by patients with COVID-19 throughout the course of the disease. It demonstrates the devastating impact of the disease and provides critically important information for clinicians, to enable them to better recognize the disease and to provide knowledge important for treatment and follow-up. The results provided the foundation for the international development of a COVID-19 specific patient-reported HRQoL questionnaire.
This article discusses three steps involved in moving us toward a theory of individual quality of life: developing a conceptual model, integrating theory components, and applying and evaluating the ...theory. Each of the proposed steps is guided by established standards regarding theory development and use. The article concludes with a discussion of criteria that can be used to evaluate the theory and the contribution that a theory of individual quality of life would make to the field of disability.
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