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.
For many adults, their role as a parent is a vital part of their life that may influence their health-related quality of life (HRQOL) and vary with the age of their child. The aim of the present ...study was to describe and compare sociodemographic and psychological factors, pain and HRQOL in parents of adolescents assessed at baseline and 2 years later,-during the COVID-19 pandemic.
A longitudinal study of 309 parents from the general Norwegian population was conducted. The parents were chosen based on their adolescent's school belonging and responded to a web-based questionnaire. We used data collected at baseline (T1), when the adolescents were aged 14-15 years (2018/2019), and two years later (T2), in 2021, when the COVID-19 pandemic was ongoing. The response rate was 55%. HRQOL was assessed using RAND-36. Data were analysed using McNemar tests, paired samples t-tests and multiple linear regression analyses.
Of the participants, 82% were mothers and 18% fathers. From T1 to T2, the average pain score increased, 1.6 (95% CI -1,4; 1.8) vs 1.8 (95% CI 1,6; 2.0), the pain interference emotion score increased, 1.6 (95% CI 1.3; 1.9) vs 1.8 (95% CI 1.5; 2.1), and a larger proportion reported pain duration > 3 months (44% vs 50%, p = 0.014). The parents were more lonely, 12.8 (95% CI 12.3; 13.3) vs 13.7 (95% CI 13.2; 14.2), and reported lower RAND-36 mental component summary (MCS) scores, 52.2 (95% CI 51.3; 53.2) vs 50.9 (95% CI 49.8; 52.0). There were no significant associations between gender, sociodemographic factors, psychological factors, pain at T1 and changes in RAND-36 physical component summary (PCS). A positive change in MCS from T1 to T2 was predicted by working part time, B = 5.22 (95% CI 1.05; 9.38) (ref no paid work) and older age, B = 0.24, (95%CI -001; 0.42), and there was a negative change with stress, B = -17.39, (95%CI -27.42; -7.51).
The parents experienced more pain and were lonelier, and more reported reduced mental HRQOL. However, the changes appear to be of limited clinical significance.
Canonical mutations in IDH1 and IDH2 produce high levels of the R-enantiomer of 2-hydroxyglutarate (R-2HG), which is a competitive inhibitor of α-ketoglutarate (αKG)-dependent enzymes and a putative ...oncometabolite. Mutant IDH1 collaborates with HoxA9 to induce monocytic leukemia in vivo. We used two mouse models and a patient-derived acute myeloid leukemia xenotransplantation (PDX) model to evaluate the in vivo transforming potential of R-2HG, S-2HG and αKG independent of the mutant IDH1 protein. We show that R-2HG, but not S-2HG or αKG, is an oncometabolite in vivo that does not require the mutant IDH1 protein to induce hyperleukocytosis and to accelerate the onset of murine and human leukemia. Thus, circulating R-2HG acts in a paracrine manner and can drive the expansion of many different leukemic and preleukemic clones that may express wild-type IDH1, and therefore can be a driver of clonal evolution and diversity. In addition, we show that the mutant IDH1 protein is a stronger oncogene than R-2HG alone when comparable intracellular R-2HG levels are achieved. We therefore propose R-2HG-independent oncogenic functions of mutant IDH1 that may need to be targeted in addition to R-2HG production to exploit the full therapeutic potential of IDH1 inhibition.
Background
While a substantial body of work postulates that adaptation (response-shift effects) may serve to hide intervention benefits, much of the research was conducted in observational studies, ...not randomized-controlled trials. This scoping review identified all clinical trials that addressed response shift phenomena, and characterized how response-shift effects impacted trial findings.
Methods
A scoping review was done of the medical literature from 1968 to 2021 using as keywords “response shift” and “clinical trial.” Articles were included if they were a clinical trial that explicitly examined response-shift effects; and excluded if they were not a clinical trial, a full report, or if response shift was mentioned only in the discussion. Clinical-trials papers were then reviewed and retained in the scoping review if they focused on randomized participants, showed clear examples of response shift, and used reliable and valid response-shift detection methods. A synthesis of review results further characterized the articles’ design characteristics, samples, interventions, statistical power, and impact of response-shift adjustment on treatment effect.
Results
The search yielded 2148 unique references, 25 of which were randomized-controlled clinical trials that addressed response-shift effects; 17 of which were retained after applying exclusion criteria; 10 of which were adequately powered; and 7 of which revealed clinically-important response-shift effects that made the intervention look significantly better.
Conclusions
These findings supported the presumption that response shift phenomena obfuscate treatment benefits, and revealed a greater intervention effect after integrating response-shift related changes. The formal consideration of response-shift effects in clinical trials research will thus not only improve estimation of treatment effects, but will also integrate the inherent healing process of treatments.
Key points
This scoping review supported the presumption that response shift phenomena obfuscate treatment benefits and revealed a greater intervention effect after integrating response-shift related changes.
The formal consideration of response-shift effects in clinical trials research will not only improve estimation of treatment effects but will also integrate the inherent healing process of treatments.
Purpose The present study examines how the coronavirus disease 2019 (COVID-19) experience affected values and priorities. Methods This cross-sectional study collected data between January and April ...2023, from 1,197 individuals who are chronically ill or part of a general population sample. Using open-ended prompts and closed-ended questions, we investigated individuals’ perceptions about COVID-19-induced changes in what quality of life means to them, what and who are important, life focus, and changes in norms and stressors. Data analyses included content and psychometric analysis, leading to latent profile analysis (LPA) to characterize distinct groups, and analysis of variance and chi-squared to compare profile groups’ demographic characteristics. Results About 75% of the study sample noted changes in values and/or priorities, particularly in the greater prominence of family and friends. LPA yielded a four-profile model that fit the data well. Profile 1 (Index group; 64% of the sample) had relatively average scores on all indicators. Profile 2 (COVID-Specific Health & Resignation to Isolation Attributable to COVID-19; 5%) represented COVID-19-specific preventive health behaviors along with noting the requisite isolation and disengagement entailed in the social distancing necessary for COVID-19 prevention. Profile 3 (High Stress, Low Trust; 25%) represented high multi-domain stress, with the most elevated scores both on focusing on being true to themselves and perceiving people to be increasingly uncivil. Profile 4 (Active in the World, Low Trust; 6%) was focused on returning to work and finding greater meaning in their activities. These groups differed on race, marital status, difficulty paying bills, employment status, number of times they reported having had COVID-19, number of COVID-19 boosters received, whether they had Long COVID, age, BMI, and number of comorbidities. Conclusion Three years after the beginning of the worldwide COVID-19 pandemic, its subjective impact is notable on most study participants’ conceptualization of quality of life, priorities, perspectives on social norms, and perceived stressors. The four profile groups reflected distinct ways of dealing with the long-term effects of COVID-19.
Background
The growth in response-shift methods has enabled a stronger empirical foundation to investigate response-shift phenomena in quality-of-life (QOL) research; but many of these methods ...utilize certain language in framing the research question(s) and interpreting results that treats response-shift effects as “bias,” “noise,” “nuisance,” or otherwise warranting removal from the results rather than as information that matters. The present project will describe the various ways in which researchers have framed the questions for investigating response-shift issues and interpreted the findings, and will develop a nomenclature for such that highlights the important information about resilience reflected by response-shift findings.
Methods
A scoping review was done of the QOL and response-shift literature (
n
= 1100 articles) from 1963 to 2020. After culling only empirical response-shift articles, raters characterized how investigators framed and interpreted study research questions (
n
= 164 articles).
Results
Of 10 methods used, papers using four of them utilized terms like “bias” and aimed to remove response-shift effects to reveal “true change.” Yet, the investigators’ reflections on their own conclusions suggested that they do not truly believe that response shift is error to be removed. A structured nomenclature is proposed for discussing response-shift results in a range of research contexts and response-shift detection methods.
Conclusions
It is time for a concerted and focused effort to change the nomenclature of those methods that demonstrated this misinterpretation. Only by framing and interpreting response shift as information, not bias, can we improve our understanding and methods to help to distill outcomes with and without response-shift effects.
Objective
The EORTC QOL Group has recently completed the cross‐cultural development and validation of a standalone measure of spiritual well‐being (SWB) for cancer patients receiving palliative care: ...the EORTC QLQ‐SWB32. The measure includes four scales: Relationships with Others, Relationship with Self, Relationship with Someone or Something Greater, and Existential, plus a Global‐SWB item. This paper reports on further research investigating relationships between sex, age and SWB for patients receiving palliative care for cancer—adjusting for other socio‐demographic, clinical and function variables, including WHO performance status and EORTC QLQ‐C15‐PAL emotional and physical function scores.
Methods
Cross‐sectional data from the validation study were used, and chi‐square, independent t tests, Mann–Whitney U tests and multiple regression analyses applied.
Results
The study included 451 participants with advanced and incurable cancer, from 14 countries. Adjusted analyses found better scores for female participants than males on three of the four EORTC QLQ‐SWB32 subscales; Relationship with others, Relationship with Someone or Something Greater and Existential plus Global‐SWB. Older age was positively associated with better Relationship with Self.
Conclusion
The findings from our participants suggest that it might be beneficial if healthcare providers seeking to address patients’ spiritual needs pay particular attention to male patients, younger patients and those with poor emotional functioning.
Essential tremor (ET) is a prevalent neurological disorder with a largely unknown underlying biology. In this genome-wide association study meta-analysis, comprising 16,480 ET cases and 1,936,173 ...controls from seven datasets, we identify 12 sequence variants at 11 loci. Evaluating mRNA expression, splicing, plasma protein levels, and coding effects, we highlight seven putative causal genes at these loci, including CA3 and CPLX1. CA3 encodes Carbonic Anhydrase III and carbonic anhydrase inhibitors have been shown to decrease tremors. CPLX1, encoding Complexin-1, regulates neurotransmitter release. Through gene-set enrichment analysis, we identify a significant association with specific cell types, including dopaminergic and GABAergic neurons, as well as biological processes like Rho GTPase signaling. Genetic correlation analyses reveals a positive association between ET and Parkinson's disease, depression, and anxiety-related phenotypes. This research uncovers risk loci, enhancing our knowledge of the complex genetics of this common but poorly understood disorder, and highlights CA3 and CPLX1 as potential therapeutic targets.
A panel of monoclonal antibodies was generated against the urea-based hapten N-(2-N-chloroacetylaminobenzyl)-N'-4-chlorophenylurea as a tool for building up sensitive immune assays to detect urea ...derivatives and to screen them for catalytic antibodies (Abs). Eleven hybridomas were obtained that produced Abs reactive to the hapten. All Abs were of IgG class. Cross reactivities of the Abs to different haptens were examined, especially to a possible transition-state analog. Only four of the hybridomas (R2-DA10/F7, R2-GE7/H2, R2-HC2/A5, R2-HD6/F7) produced Abs crossreactive with the transition-state analog. From the 11 hybridomas, hybridoma B76-BF5 was chosen for further characterization. Compared to the other Abs, B76-BF5 showed the strongest binding and had a rather restricted specificity. These Abs could be used to build up a sensitive enzyme immunoassay for the detection of the hapten. All Abs were screened for crossreactivity with the pesticides monuron and diuron. No reactivity could be detected. In addition, the nucleotide sequences of the variable light and heavy chain genes of the similarly reactive Abs B76-BF5, B76-BB3, R2-DA10/F7, and R2-GA6/G3 were determined to clarify whether structure and binding specificity of these Abs showed any correlation.
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