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

A Practical Framework for Navigating Ethical Challenges in Collaborative Community Research

To effectively mobilize community-based organizations (CBOs) and international non-governmental organizations (NGOs) in research, important ethical issues must be addressed. A memorandum of understanding (MOU) approach, providing a framework and a tool to be used for establishing effective community-research partnerships, was developed by the Community Collaboration Core (CCC) of the HIV Center for Clinical and Behavioral Studies. Aims of the CCC include: (1) Initiating and sustaining successful partnerships in HIV prevention research in areas of sexuality, gender, mental health, and of mutual benefit to communities; (2) Advancing the science of collaboration among researchers, practitioners, and government in HIV prevention. Developed and assessed over a two-year period by researchers, CBO/NGO and public health representatives, this MOU can be used by potential research and community partners to address the most important issues early in a collaborative research project. Clarifying essential roles, responsibilities, and relationships, establishing trust and transparency in that process, can guide collaborators in planning the important steps for beginning and sustaining an ethical and successful research project

A Practical Framework for Navigating Ethical Challenges in Collaborative Community Research

To effectively mobilize community-based organizations (CBOs) and international non-governmental organizations (NGOs) in research, important ethical issues must be addressed. A memorandum of understanding (MOU) approach, providing a framework and a tool to be used for establishing effective community-research partnerships, was developed by the Community Collaboration Core (CCC) of the HIV Center for Clinical and Behavioral Studies. Aims of the CCC include: (1) Initiating and sustaining successful partnerships in HIV prevention research in areas of sexuality, gender, mental health, and of mutual benefit to communities; (2) Advancing the science of collaboration among researchers, practitioners, and government in HIV prevention. Developed and assessed over a two-year period by researchers, CBO/NGO and public health representatives, this MOU can be used by potential research and community partners to address the most important issues early in a collaborative research project. Clarifying essential roles, responsibilities, and relationships, establishing trust and transparency in that process, can guide collaborators in planning the important steps for beginning and sustaining an ethical and successful research project

Queens Library HealthLink: Fighting Health Disparities through Community Engagement

Queens, New York is a diverse urban environment and home to many recent immigrants and low-income populations, which are known to have lower access to healthcare and are thus at higher risk for a wide range of negative health outcomes. Queens residents face serious cancer disparities, with late-stage cancer detection rates for breast, colorectal and prostate cancers far surpassing national averages. Developed to address such disparities, Queens Library HealthLink (HealthLink) is a four-way partnership that seeks to increase access to cancer screening, care and education in medically underserved neighborhoods in Queens. Through 20 of the 62 Queens Public Libraries, HealthLink organizes community members into Cancer Action Councils that develop and tailor interventions suited to community needs, assets and priorities, as well as perform evaluation of their work. This article describes the partnership, its program outcomes and case examples of successful initiatives in order to present HealthLink’s relevance to other urban public libraries as a model for reaching broad, underserved audiences with health information and services

Reserve and Reserve-building activities research: key challenges and future directions

Background: The concept of Cognitive Reserve has great appeal and has led to an interesting and important body of research. We believe, however, that it is unnecessarily limited by ‘habits’ of measurement, nomenclature, and intra-disciplinary thinking. Main body A broader, more comprehensive way of conceptualizing Reserve is proposed that invokes a broader measurement approach, nomenclature that uses specific terms embedded in a theoretical model, and crosses disciplines. Conclusion: Building on this comprehensive conceptualization, we will discuss fruitful directions for future research

Cancer beliefs and screening behaviors: The impact of neighborhood and other social determinants of health

BackgroundBeliefs about cancer influence breast and colorectal cancer (CRC) screening behavior. Screening rates for these cancers differ in the contiguous neighborhoods of East Harlem (EH), Central Harlem (CH), and the Upper East Side (UES), which have distinct socio-demographic compositions. We assessed the belief-screening behavior relationship in these neighborhoods.MethodsThe 2019 Community Cancer Needs Survey included adults eligible for breast and/or colorectal cancer screening. Raking was used to generate neighborhood-specific distribution estimates. Categorical variables were compared using Chi-square tests. Stepwise logistic regression models were used to estimate odds ratios (OR) and 95% confidence intervals (CI) for the association between cancer beliefs and screening.ResultsOur weighted sample included 147,726 respondents. Screening was 75% in CH, 81% in EH, and 90% in the UES for breast cancer, and 71%, 76%, and 92% for CRC, respectively. The fatalistic belief “There’s not much you can do to lower your chances of getting cancer” differed by neighborhood with screening more likely in CH respondents (breast OR =1.45 and colorectal OR =1.11), but less likely in EH (OR= 0.77 and 0.37, respectively). UES ORs were not generated due to too few unscreened respondents.ConclusionsCancer beliefs were inconsistently associated with breast and CRC screening across three NYC neighborhoods. This suggests that a given belief may either motivate or deter screening, depending upon context or interpretation. Once access is addressed, efforts seeking to enhance screening rates should consider implications of communities’ varying beliefs

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

A 'short walk' is longer before radiotherapy than afterwards: a qualitative study questioning the baseline and follow-up design

<p>Abstract</p> <p>Background</p> <p>Numerous studies have indirectly demonstrated changes in the content of respondents' QoL appraisal process over time by revealing response-shift effects. This is the first known study to qualitatively examine the assumption of consistency in the content of the cognitive processes underlying QoL appraisal over time. Specific objectives are to examine whether the content of each distinct cognitive process underlying QoL appraisal is (dis)similar over time and whether patterns of (dis)similarity can be discerned across and within patients and/or items.</p> <p>Methods</p> <p>We conducted cognitive think-aloud interviews with 50 cancer patients prior to and following radiotherapy to elicit cognitive processes underlying the assessment of 7 EORTC QLQ-C30 items. Qualitative analysis of patients' responses at baseline and follow-up was independently carried out by 2 researchers by means of an analysis scheme based on the cognitive process models of Tourangeau et al. and Rapkin & Schwartz.</p> <p>Results</p> <p>The interviews yielded 342 comparisons of baseline and follow-up responses, which were analyzed according to the five cognitive processes underlying QoL appraisal. The content of comprehension/frame of reference changed in 188 comparisons; retrieval/sampling strategy in 246; standards of comparison in 152; judgment/combinatory algorithm in 113; and reporting and response selection in 141 comparisons. Overall, in 322 comparisons of responses (94%) the content of at least one cognitive component changed over time. We could not discern patterns of (dis)similarity since the content of each of the cognitive processes differed across and within patients and/or items. Additionally, differences found in the content of a cognitive process for one item was not found to influence dissimilarity in the content of that same cognitive process for the subsequent item.</p> <p>Conclusions</p> <p>The assumption of consistency in the content of the cognitive processes underlying QoL appraisal over time was not found to be in line with the cognitive processes described by the respondents. Additionally, we could not discern patterns of (dis)similarity across and within patients and/or items. In building on cognitive process models and the response shift literature, this study contributes to a better understanding of patient-reported QoL appraisal over time.</p

Beyond satisfaction: Using the Dynamics of Care assessment to better understand patients' experiences in care

<p>Abstract</p> <p>Background</p> <p>Patient perceptions of and satisfaction with care have become important indicators of the quality of services and the relationship of services to treatment outcomes. However, assessment of these indicators continues to be plagued by measurement problems, particularly the lack of variance in satisfaction data. In this article, we present a new approach to better capture patient perceptions of experiences in care, the Dynamics of Care (DoC) assessment. It is an in-depth approach to defining and assessing patients' perspectives at different junctures in care, including their decisions about whether and where to seek care, the barriers encountered, and the treatments and services received.</p> <p>Methods</p> <p>The purpose of this article is to describe, validate, and discuss the benefits and limitations of the DoC, which was administered as part of a longitudinal study to evaluate the New York State HIV Special Needs Plan (SNP), a Medicaid managed care model for people living with HIV/AIDS. Data are from 426 study respondents across two time points.</p> <p>Results</p> <p>The results demonstrate the validity and value of the DoC. Help seeking decisions and satisfaction with care appear to be situation-specific, rather than person-specific. However, barriers to care appear to be more cross-situational for respondents, and may be associated with clients' living situations or care arrangements. Inventories in this assessment that were designed to identify potential deterrents to help seeking and difficulties encountered in care demonstrated clear principal component structures, and helped to explain satisfaction with care. The problem resolution index was found to be independent from satisfaction with care and the data were more normally distributed. DoC data were also associated with subsequent utilization and change in quality of life.</p> <p>Conclusion</p> <p>The DoC was designed to be a flexible, integrated measure to determine individuals' salient service needs, help seeking and experiences in care. One of the many strengths of the assessment is its focus on specific problems in context, thus providing a more sensitive and informative way to understand processes in care from the patient's perspective. This approach can be used to direct new programs and resources to the patients and situations that require them.</p