Toward a theoretical model of quality-of-life appraisal: Implications of findings from studies of response shift

Mounting evidence for response shifts in quality of life (QOL) appraisal indicates the need to include direct measurement of the appraisal process itself as a necessary part of QOL assessment. We propose that directly assessing QOL appraisal processes will not only improve our ability to interpret QOL scores in the traditional sense, but will also yield a deeper understanding of the appraisal process in the attribution of and divergence in meaning. The published evidence for response shift is reviewed, and an assessment paradigm is proposed that includes the explicit measurement of QOL appraisal process parameters: 1) induction of a frame of reference; 2) recall and sampling of salient experiences; 3) standards of comparison used to appraise experiences; and 4) subjective algorithm used to prioritize and combine appraisals to arrive at a QOL rating. A QOL Appraisal Profile, which measures key appraisal processes, is introduced as an adjunct to existing QOL scales. The proposed theoretical model, building on the Sprangers and Schwartz (1999) model and highlighting appraisal processes, provides a fully testable theoretical treatment of QOL and change in QOL, suggesting hypothesized causal relationships and explanatory pathways for both cross-sectional and longitudinal QOL research

Reconsidering the psychometrics of quality of life assessment in light of response shift and appraisal

The increasing evidence for response shift phenomena in quality of life (QOL) assessment points to the necessity to reconsider both the measurement model and the application of psychometric analyses. The proposed psychometric model posits that the QOL true score is always contingent upon parameters of the appraisal process. This new model calls into question existing methods for establishing the reliability and validity of QOL assessment tools and suggests several new approaches for describing the psychometric properties of these scales. Recommendations for integrating the assessment of appraisal into QOL research and clinical practice are discussed

Reflections on changeability versus stability of health-related quality of life: distinguishing between its environmental and genetic components

The field of health-related quality of life (HRQOL) could benefit from a broadening of perspectives to include recent advancements in research on adaptation, positive psychology, and genetics. These advances shed new light on the extent to which HRQOL is changeable or fixed. The objective of this paper is to integrate these insights and to discuss their implications for HRQOL research. We describe the Hedonic Treadmill theory, which asserts that positive events only temporarily affect happiness since people quickly return to hedonic neutrality. New empirical evidence suggests important revisions of this theory, providing a more optimistic picture of the possibility for change. Advances in positive psychology show that relatively simple interventions have the power to induce a sustainable increase in levels of happiness. Finally, a small but growing number of studies have found independent genetic influences in well-being, life satisfaction, perceived health, and even HRQOL. Given the increasing empirical evidence that HRQOL can be sustainably enhanced and is in part genetically determined, it may be useful to consider HRQOL as a concept that has state (environmental) and trait (genetic) components. This distinction will allow us to explore new pathways of improving theory, methods, and clinical practice. The overarching novel questions concern the extent to which HRQOL components are environmentally or genetically determined, and which factors lead to lasting improvement. This distinction begs for new research approaches, such as time-sampling techniques and interdisciplinary research investigating the genetic variants of HRQOL. Distinguishing between those aspects that are amenable to change from those that are relatively fixed and stable will help better target specific support interventions

Comparing human coding to two natural language processing algorithms in aspirations of people affected by Duchenne Muscular Dystrophy

Qualitative methods can enhance our understanding of constructs that have not been well portrayed and enable nuanced depiction of experience from study participants who have not been broadly studied. However, qualitative data require time and effort to train raters to achieve validity and reliability. This study compares recent advances in Natural Language Processing (NLP) models with human coding. This web-based study (N=1,253; 3,046 free-text entries, averaging 64 characters per entry) included people with Duchenne Muscular Dystrophy (DMD), their siblings, and a representative comparison group. Human raters (n=6) were trained over multiple sessions in content analysis as per a comprehensive codebook. Three prompts addressed distinct aspects of participants’ aspirations. Unsupervised NLP was implemented using Latent Dirichlet Allocation (LDA), which extracts latent topics across all the free-text entries. Supervised NLP was done using a Bidirectional Encoder Representations from Transformers (BERT) model, which requires training the algorithm to recognize relevant human-coded themes across free-text entries. We compared the human-, LDA-, and BERT-coded themes. Study sample contained 286 people with DMD, 355 DMD siblings, and 997 comparison participants, age 8-69. Human coders generated 95 codes across the three prompts and had an average inter-rater reliability (Fleiss’s kappa) of 0.77, with minimal rater-effect (pseudo R2=4%). Compared to human coders, LDA does not yield easily interpretable themes. BERT correctly classified only 61-70% of the validation set. LDA and BERT required technical expertise to program and took approximately 1.15 minutes per open-text entry, compared to 1.18 minutes for human raters including training time. LDA and BERT provide potentially viable approaches to analyzing large-scale qualitative data, but both have limitations. When text entries are short, LDA yields latent topics that are hard to interpret. BERT accurately identified only about two thirds of new statements. Humans provided reliable and cost-effective coding in the web-based context. The upfront training enables BERT to process enormous quantities of text data in future work, which should examine NLP’s predictive accuracy given different quantities of training data

Reserve-building as a buffer for depression among individuals living with disability: a longitudinal study of current activities related to brain health

AimsThis study examined whether reserve-building activities are associated with attenuated reported depression among people who were disabled from work due to a medical condition as compared to employed, retired, and unemployed participants.MethodsThis secondary analysis included 771 individuals who provided data at three time points: baseline (late Spring 2020), follow-up 1 (Spring 2021), and follow-up 2 (Fall 2021). The DeltaQuest Reserve-Building Measure assessed current activities related to brain health. An analysis of variance and Pearson correlation coefficients assessed group differences in reserve-building activity scores. Classification and regression tree (CART) modeling investigated factors associated with higher and lower reported depression by employment group. The random effects (RE) models tested two buffering hypotheses: (1) comparing all groups to the employed group and (2) examining within-group effects.ResultsEngaging in outdoor activities, exercise, and religious/spiritual activities was associated with reduced depression over time in the overall sample. While disabled participants endorsed lower levels of being Active in the World, Outdoor activities, and Exercise and higher levels of Inner Life and Passive Media Consumption than the other employment groups, more reserve-building activities distinguished depression levels in the disabled group's CART models compared to the others. Among the disabled, unemployed, and retired participants, engaging in any reserve-building activities was also associated with lower depression scores, which was distinct from the employed participants. In the RE models that used the employed group as the reference category, only the disabled group's level of depression was buffered by engaging in creative activities. In the within-group RE models, the disabled group's engagement in Religious/Spiritual, Outdoors, and Games was associated with substantially reduced within-group depression, which was different from the other employment groups. In contrast, reserve-building activities were not implicated at all as buffers for employed participants.ConclusionThis study revealed a beneficial effect of reserve-building activities on buffering depression over time during the COVID-19 pandemic, particularly for disabled people. It documented that even if such individuals engaged in lesser amounts of such activities as compared to other employment groups, the buffering effect was substantial. Given the low-cost and accessible nature of reserve-building activities, it would be worthwhile to encourage such activities for disabled individuals

Listening to the elephant in the room: response-shift effects in clinical trials research

publishedVersio

Validation of a new measure of concept of a good death

BACKGROUND: The concept of a good death is central to end-of-life care research. Despite its importance and the high interest in the topic, there are few measures currently available for use in clinical research. PURPOSE: The present work describes the development and testing of a set of items intended to measure the importance of several components posited to be critical to the concept of a good death. It is intended for use with health care providers and lay people in the context of end-of-life care research and education. POPULATION: Four cohorts (n = 596) were recruited to participate, representing two helping profession disciplines, nonhelping professionals, and a range of ages, specifically: (1) undergraduate medical students; (2) master\u27s degree students in nursing; (3) graduate students from the life sciences; and (4) practicing hospice nurses. METHODS: Participants completed self-report questionnaires at baseline and retest. Psychometric analyses included item frequency distributions, factor analysis, alpha reliability, intraclass correlation, and measures of association. RESULTS: The new Concept of a Good Death measure demonstrated good item frequency distributions, acceptable internal consistency reliability, and test-retest stability. Its factor structure revealed that three distinct domains are measured, reflecting the psychosocial/spiritual, physical, and clinical aspects of a good death. An examination of patterns of correlations showed differential associations with death anxiety, spiritual beliefs and practices, anxious mood, and sociodemographic characteristics. CONCLUSIONS: The new Concept of a Good Death instrument appears to measure three distinct factors which people consider important to a Good Death. Ratings of the importance of these factors are reliable and valid. The instrument has the advantage of being a brief, self-report index for use in end-of-life care research

Detecting attitudinal changes about death and dying as a result of end-of-life care curricula for medical undergraduates

BACKGROUND: There is heightened emphasis on teaching end-of-life (EOL) care in the medical school curriculum, but a relative paucity of tools focused on assessing key attitudinal changes due to curricula. OBJECTIVE: We sought to evaluate the responsiveness of two validated measures of relevant attitudes to changes caused by two EOL curricula: a year-long Elective and a day-long Inter-Clerkship for medical undergraduates. DESIGN: A case control design (n = 100) and a one group pretest-posttest design (n = 98) were used to ask: (1) Are these two attitudinal measures responsive to changes induced by two undergraduate EOL curricula? (2) Do these two curricula have an additive effect (i.e., taking both yields a stronger attitudinal change than taking only one)? (3) Are there attitudinal and sociodemographic differences between students who took the year-long elective EOL course and those who did not? SUBJECTS: Undergraduate medical students. MEASUREMENTS: Two self-report measures: Concept of a Good Death and Concerns about Dying. RESULTS: Compared to nonelective participants, Elective participants reported less concern about working with dying patients at the end of the course and increased their valuation of clinical criteria in thinking about a good death. There were trends suggesting decreased general concern about dying and increased valuation of closure, and an interaction suggesting a larger impact on those with higher precourse concern scores. There were no differences between elective and nonelective participants at baseline. The Interclerkship increased students\u27 valuation of personal control aspects of death, and there was a trend in reducing concerns about working with dying patients. We did not find an additive effect of taking both curricula. CONCLUSIONS: We conclude that both measures were responsive to the relatively large effects this study would have been able to detect, and may be useful in future research to substantiate the effectiveness of EOL curricula in influencing attitudes and level of comfort with death and dying