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.
We aimed to develop a European Organization for Research and Treatment of Cancer (EORTC) Quality of Life (QoL) module tailored for patients with advanced (resectable or unresectable stage III/IV) ...melanoma receiving immune checkpoint inhibitors or targeted therapy.
Following the EORTC QoL Group module development guidelines, we conducted phases 1 and 2 of the development process. In phase 1, we generated a list of health-related (HR)QoL issues through a systematic literature review and semi-structured interviews with healthcare professionals (HCPs) and patients with advanced melanoma. In phase 2, these issues were converted into questionnaire items to create the preliminary module.
Phase 1: we retrieved 8006 articles for the literature review, of which 35 were deemed relevant, resulting in 84 HRQoL issues being extracted to create the initial issue list. Semi-structured interviews with 18 HCPs and 28 patients with advanced melanoma resulted in 28 issues being added to the initial issue list. Following EORTC module development criteria, 26 issues were removed, and two issues were added after review by patient advocates.
Phase 2: To ensure uniformity and avoid duplication, 16 issues were consolidated into eight items. Additionally, an independent expert contributed one new item, resulting in a preliminary module comprising 80 HRQoL items.
We identified a range of HRQoL issues (dry skin, xerostomia, and arthralgia) relevant to patients with stage III/IV melanoma. Future module development phases will refine the questionnaire. Once completed, this module will enable standardized assessment of HRQoL in patients with (locally) advanced melanoma.
•We aimed to create a HRQoL module tailored for patients with advanced melanoma.•We identified the most important symptomatic HRQoL issues associated with ICI and TT.•Our study highlights the benefit of using a disease-specific instrument to measure HRQoL.
Purpose
Quality of life (QOL) is an important concept in the field of health and medicine. QOL is a complex concept that is interpreted and defined differently within and between disciplines, ...including the fields of health and medicine. The aims of this study were to systematically review the literature on QOL in medicine and health research and to describe the country of origin, target groups, instruments, design, and conceptual issues.
Methods
A systematic review was conducted to identify research studies on QOL and health-related quality of life (HRQOL). The databases Scopus, which includes Embase and MEDLINE, CINAHL, and PsycINFO were searched for articles published during one random week in November 2016. The ten predefined criteria of Gill and Feinstein were used to evaluate the conceptual and methodological rigor.
Results
QOL research is international and involves a variety of target groups, research designs, and QOL measures. According to the criteria of Gill and Feinstein, the results show that only 13% provided a definition of QOL, 6% distinguished QOL from HRQOL. The most frequently fulfilled criteria were: (i) stating the domains of QOL to be measured; (ii) giving a reason for choosing the instruments used; and (iii) aggregating the results from multiple items.
Conclusion
QOL is an important endpoint in medical and health research, and QOL research involves a variety of patient groups and different research designs. Based on the current evaluation of the methodological and conceptual clarity of QOL research, we conclude that the majority QOL studies in health and medicine have conceptual and methodological challenges.
Purpose The original COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) checklist was developed to assess the methodological quality of single studies on ...measurement properties of Patient-Reported Outcome Measures (PROMs). Now it is our aim to adapt the COSMIN checklist and its four-point rating system into a version exclusively for use in systematic reviews of PROMs, aiming to assess risk of bias of studies on measurement properties. Methods For each standard (i.e., a design requirement or preferred statistical method), it was discussed within the COSMIN steering committee if and how it should be adapted. The adapted checklist was pilot-tested to strengthen content validity in a systematic review on the quality of PROMs for patients with hand osteoarthritis. Results Most important changes were the reordering of the measurement properties to be assessed in a systematic review of PROMs; the deletion of standards that concerned reporting issues and standards that not necessarily lead to biased results; the integration of standards on general requirements for studies on item response theory with standards for specific measurement properties; the recommendation to the review team to specify hypotheses for construct validity and responsiveness in advance, and subsequently the removal of the standards about formulating hypotheses; and the change in the labels of the four-point rating system. Conclusions The COSMIN Risk of Bias checklist was developed exclusively for use in systematic reviews of PROMs to distinguish this application from other purposes of assessing the methodological quality of studies on measurement properties, such as guidance for designing or reporting a study on the measurement properties.
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.
PDF
