When better is the enemy of good: two cautionary tales of conceptual validity versus parsimony in clinical psychometric research.

This paper presents an empirical challenge to the assumption that an item-response theory analysis always yields a better measure of a clinical construct. We summarize results from two measurement development studies that showed that such an analysis lost important content reflecting the conceptual model ("conceptual validity"). The cost of parsimony may thus be too high. Conceptual models that form the foundation of QOL measurement reflect the patient's experience. This experience may include concepts and items that are psychometrically "redundant" but capture distinct features of the concept. Good measurement is likely a balance between relying on IRT's quantitative metrics and recognizing the importance of conceptual validity and clinical utility.

The faces of Long-COVID: interplay of symptom burden with socioeconomic, behavioral and healthcare factors.

AIMS: The long-term effects of COVID-19 (Long COVID) include 19 symptoms ranging from mild to debilitating. We examined multidimensional correlates of Long COVID symptom burden. METHODS: This study focused on participants who reported having had COVID in Spring 2023 (n = 656; 85% female, mean age = 55, 59% college). Participants were categorized into symptom-burden groups using Latent Profile Analysis of 19 Long-COVID symptoms. Measures included demographics; quality of life and well-being (QOL); and COVID-specific stressors. Bivariate and multivariate associations of symptom burden were examined. RESULTS: A three-profile solution reflected low, medium, and high symptom burden, aligning with diagnosis confirmation and treatment by a healthcare provider. Higher symptom burden was associated with reporting more comorbidities; being unmarried, difficulty paying bills, being disabled from work, not having a college degree, younger age, higher body mass index, having had COVID multiple times, worse reported QOL, greater reported financial hardship and worry; maladaptive coping, and worse healthcare disruption, health/healthcare stress, racial-inequity stress, family-relationship problems, and social support. Multivariate modeling revealed that financial hardship, worry, risk-taking, comorbidities, health/healthcare stress, and younger age were risk factors for higher symptom burden, whereas social support and reducing substance use were protective factors. CONCLUSIONS: Long-COVID symptom burden is associated with substantial, modifiable social and behavioral factors. Most notably, financial hardship was associated with more than three times the risk of high versus low Long-COVID symptom burden. These findings suggest the need for multi-pronged support in the absence of a cure, such as symptom palliation, telehealth, social services, and psychosocial support.

Individual differences in the long-term impact of the pandemic: moderators of COVID-related hardship, worry, and social support.

PURPOSE: Understanding people's response to the pandemic needs to consider individual differences in priorities and concerns. The present study sought to understand how individual differences in cognitive-appraisal processes might moderate the impact of three COVID-specific factors-hardship, worry, and social support-on reported depression. METHODS: This longitudinal study of the psychosocial impact of the COVID-19 pandemic included 771 people with data at three timepoints over 15.5 months. Participants were recruited from panels of chronically ill or general population samples. Depression was measured by an item response theory validated depression index created using items from existing measures that reflected similar content to the Patient Health Questionnaire-8. COVID-specific factors of hardship, worry, and social support were assessed with items compiled by the National Institutes of Health. The Quality of Life Appraisal Profilev2 Short-Form assessed cognitive appraisal processes. A series of random effects models examined whether appraisal moderated the effects of hardship, worry, and social support on depression over time. RESULTS: Over time the association between low social support and depression was greater (p = 0.0181). Emphasizing the negative was associated with exacerbated depression, in particular for those with low social support (p = 0.0007). Focusing on demands and habituation was associated with exacerbated depression unless one experienced greater hardship (p = 0.0074). There was a stronger positive connection between recent changes and depression for those people with higher worry scores early in the pandemic as compared to later, but a stronger positive correlation for those with lower worry scores later in the pandemic (p = 0.0015). Increased endorsement of standards of comparison, emphasizing the negative, problem goals, and health goals was associated with worse depression scores (all p < 0.0001). People who were younger, disabled, or had greater difficulty paying bills also reported worse depression (p < 0.0001, 0.0001, and 0.002, respectively). CONCLUSION: At the aggregate level, COVID-specific stressors changed over the course of the pandemic, whereas depression and social-support resources seemed stable. However, deeper analysis revealed substantial individual differences. Cognitive-appraisal processes showed considerable variability across individuals and moderated the impact of COVID-specific stressors and resources over time. Future work is needed to investigate whether coaching individuals away from maladaptive cognitive-appraisal processes can reduce depression and lead to better overall well-being.

Health-related Quality of Life After Robotic-assisted vs Open Radical Cystectomy: Analysis of a Randomized Trial.

PURPOSE: We compare health-related quality of life using a broad range of validated measures in patients randomized to robotic-assisted radical cystectomy vs open radical cystectomy. METHODS: We retrospectively analyzed patients that had enrolled in both a randomized controlled trial comparing robotic-assisted laparoscopic radical cystectomy vs open radical cystectomy and a separate prospective study of health-related quality of life. The prospective health-related quality of life study collected 14 patient-reported outcomes measures preoperatively and at 3, 6, 12, 18, and 24 months postoperatively. Linear mixed-effects models with an interaction term (study arm×time) were used to test for differences in mean domain scores and differing effects of approach over time, adjusting for baseline scores. RESULTS: A total of 72 patients were analyzed (n=32 robotic-assisted radical cystectomy, n=40 open radical cystectomy). From 3-24 months post-radical cystectomy, no significant differences in mean scores were detected. Mean differences were small in the following European Organization for Research and Treatment of Cancer QLQ-C30 (Core Quality of Life Questionnaire) domains: Global Quality of Life (-1.1; 95% CI -8.4, 6.2), Physical Functioning (-0.4; 95% CI -5.8, 5.0), Role Functioning (0.7; 95% CI -8.6, 10.0). Mean differences were also small in bladder cancer-specific domains (European Organization for Research and Treatment of Cancer QLQ-BLM30 [Muscle Invasive Bladder Cancer Quality of Life Questionnaire]): Body Image (2.9; 95% CI -7.2, 13.1), Urinary Symptoms (8.0; 95% CI -3.0, 19.0). In Urostomy Symptoms, there was a significant interaction term (P < .001) due to lower open radical cystectomy scores at 3 and 24 months. Other domains evaluating urinary, bowel, sexual, and psychosocial health-related quality of life were similar. CONCLUSIONS: Over a broad range of health-related quality of life domains comparing robotic-assisted radical cystectomy and open radical cystectomy, there are unlikely to be clinically relevant differences in the medium to long term, and therefore health-related quality of life over this time period should not be a consideration in choosing between approaches.

Decision aids for localized prostate cancer in diverse minority men: Primary outcome results from a multicenter cancer care delivery trial (Alliance A191402CD).

BACKGROUND: Decision aids (DAs) can improve knowledge for prostate cancer treatment. However, the relative effects of DAs delivered within the clinical encounter and in more diverse patient populations are unknown. A multicenter cluster randomized controlled trial with a 2×2 factorial design was performed to test the effectiveness of within-visit and previsit DAs for localized prostate cancer, and minority men were oversampled. METHODS: The interventions were delivered in urology practices affiliated with the NCI Community Oncology Research Program Alliance Research Base. The primary outcome was prostate cancer knowledge (percent correct on a 12-item measure) assessed immediately after a urology consultation. RESULTS: Four sites administered the previsit DA (39 patients), 4 sites administered the within-visit DA (44 patients), 3 sites administered both previsit and within-visit DAs (25 patients), and 4 sites provided usual care (50 patients). The median percent correct in prostate cancer knowledge, based on the postvisit knowledge assessment after the intervention delivery, was as follows: 75% for the pre+within-visit DA study arm, 67% for the previsit DA only arm, 58% for the within-visit DA only arm, and 58% for the usual-care arm. Neither the previsit DA nor the within-visit DA had a significant impact on patient knowledge of prostate cancer treatments at the prespecified 2.5% significance level (P = .132 and P = .977, respectively). CONCLUSIONS: DAs for localized prostate cancer treatment provided at 2 different points in the care continuum in a trial that oversampled minority men did not confer measurable gains in prostate cancer knowledge.

"Looking Under the Hood" of Anchor-Based Assessment of Clinically Important Change: A Machine Learning Approach.

OBJECTIVES: The Global Assessment of Change (GAC) item has facilitated the interpretation of change in patient-reported outcomes, providing an anchor for computing minimally important differences. Construct validity has been documented via disease-specific patient-reported outcomes change. We examined what domains, sociodemographic characteristics, attributions of change, and cognitive-appraisal processes are reflected in GAC ratings. METHODS: This secondary analysis examined data from 1,481 chronically ill patients and caregivers surveyed at baseline and 17 months. Items queried change since baseline in overall disease symptoms (GAC) and in physical, emotional, and social functioning. Candidate predictors included sociodemographic factors, health-related quality-of-life domains, change attributions, and quality-of-life appraisal processes. Least absolute shrinkage and selection operator and bootstrapping tested 77 predictors' effectiveness and stability. RESULTS: GAC worsening was notably associated with being disabled (ß = -0.24) and having difficulty paying bills (ß = -0.13). GAC was better explained by the physical domain than the emotional or social (ß = 0.67, 0.10, and 0.03, respectively; R2adj = 0.63) after sociodemographic-covariate adjustment. In a separate model (R2adj = 0.18), GAC variance was explained by attributions about changing health and changing response of one's health team, goals related to solving healthcare problems and maintaining activities, and appraisal about things getting better (ß = -0.14, 0.08, -0.07, 0.05, 0.21, respectively; prange ~0.0005-0.05) after adjustment. CONCLUSIONS: The GAC primarily reflects the physical domain, and the GAC reflects attributions, goals, and patterns of emphasis related to change in health and healthcare. Commonly unmeasured factors have some bearing on GAC scores and can facilitate the interpretation of change.

Response-shift effects in neuromyelitis optica spectrum disorder: estimating response-shift-adjusted scores using equating.

BACKGROUND: In our companion paper, random intercept models (RIMs) investigated response-shift effects in a clinical trial comparing Eculizumab to Placebo for people with neuromyelitis optica spectrum disorder (NMOSD). RIMs predicted Global Health using the EQ-5D Visual Analogue Scale item (VAS) to encompass broad criteria that people might consider. The SF36™v2 mental and physical component scores (MCS and PCS) helped us detect response shift in VAS. Here, we sought to "back-translate" the VAS into the MCS/PCS scores that would have been observed if response shift had not been present. METHODS: This secondary analysis utilized NMOSD clinical trial data evaluating the impact of Eculizumab in preventing relapses (n = 143). Analyses began by equating raw scores from the VAS, MCS, and PCS, and computing scores that removed response-shift effects. Correlation analysis and descriptive displays provided a more comprehensive examination of response-shift effects. RESULTS: MCS and PCS crosswalks with VAS equated the scores that include and exclude response-shift effects. These two sets of scores had low shared variance for MCS for both groups, suggesting that corresponding mental health constructs were substantially different. The shared variance contrast for physical health was distinct only for the Placebo group. The larger MCS response-shift effects were found at end of study for Placebo only and were more prominent at extremes of the MCS score distribution. CONCLUSIONS: Our results reveal notable treatment group differences in MCS but not PCS response shifts, which can explain null results detected in previous work. The method introduced herein provides a way to provide further information about response-shift effects in clinical trial data.

Positive emotions despite substantial burden: The alchemy of haemophilia caregiving.

INTRODUCTION: Qualitative interviews when developing the haemophilia caregiver impact measure© (HCI) documented the importance of capturing the positive aspects of caregiving, not just the negative. AIM: The present study thus investigates the construct underlying the positive emotions HCI subscale and tests models proposing a more comprehensive way of thinking about this construct. METHODS: Secondary analysis was implemented on longitudinal web-based survey data (n = 323) from haemophilia A or haemophilia B caregivers. Person-reported outcomes (PROs) included the HCI, the PROMIS-10 and Ryff psychological well-being subscales. Predictors included caregiver demographics; patient haemophilia characteristics; exercise; adherence; and quality-of-life (QOL) appraisal processes as measured by the brief appraisal inventory (BAI) which yields composite scores assessing awareness of challenges, fulfillment and growth, stay positive, social comparison and interpersonal problem-solving. Second-order factor analysis, structural equation modelling and residual modelling were implemented. RESULTS: A structural equation model fit the data well that contained bifactor representation of well-being with a general factor comprised of environmental mastery, positive relations with others, physical functioning and emotional functioning. Positive emotions was modelled as a component of well-being, with a unique component ('Alchemy') characterized by its associations with stay positive, and awareness of challenges appraisals, and difficulty paying bills. Alchemy had positive linear relationships with the first two, and a positive quadratic relationship with difficulty paying bills. CONCLUSIONS: Adopting positive-focused ways of thinking about one's life limitations may transform the negatives of haemophilia caregiving into something positive. Such cognitive habits reflect an awareness and acceptance of the limitations imposed by haemophilia caregiving.

Diagnosis Setting and Colorectal Cancer Outcomes: The Impact of Cancer Diagnosis in the Emergency Department.

BACKGROUND: The rate of diagnosis of colorectal cancer (CRC) in the emergency department (ED), its characteristics, and its effect on outcomes have been poorly described. MATERIALS AND METHODS: Chart review was conducted to identify presenting clinical setting leading to diagnosis, symptoms, and history of colonoscopy for patients diagnosed with CRC at a single institution from 2012-2014. Patients diagnosed with CRC as a result of an ED visit (EDDx) were compared with those diagnosed after presentation to other settings (non-EDDx). RESULTS: Of 638 patients meeting inclusion criteria, 271 (42.4%) were EDDx patients. These patients were more likely to be older than 80 y (29.89% versus 19.35%), have Medicare (59.78% versus 42.78%) or Medicaid (23.62% versus 12.81%) insurance, have stage IV cancer (45.02% versus 18.26%), and were symptomatic at the time of presentation (94.83% versus 64.03%). EDDx patients were less likely to ever have had a colonoscopy (21.77% versus 41.69%). In a model adjusted for patient demographics, cancer stage, presence of symptoms, and history of prior colonoscopy, EDDx was associated with increased mortality (hazard ratio, 1.89; 95% confidence interval, 1.3-2.8). On stratifying survival by stage, it was found that for all stages, EDDx was associated with decreased survival. CONCLUSIONS: More than 40% of patients with CRC received their diagnosis through the ED. EDDx was associated with a nearly twofold mortality risk increase. EDDx should be considered a marker of poor outcomes for CRC and may be related to unaccounted patient-level or systems-level factors. Efforts should be made to identify modifiable risks of cancer diagnosis in the ED to improve cancer outcomes.

Utilizing the Patient Reported Outcomes Measurement Information System (PROMIS®) to increase referral to ancillary support services for severely symptomatic patients with gynecologic cancer.

OBJECTIVE: The Patient-Reported Outcomes Measurement Information System (PROMIS®) Network has developed a comprehensive repository of electronic patient reported outcomes measures (ePROs) of major symptom domains that have been validated in cancer patients. Their use for patients with gynecologic cancer has been understudied. Our objective was to establish feasibility and acceptability of PROMIS ePRO integration in a gynecologic oncology outpatient clinic and assess if it can help identify severely symptomatic patients and increase referral to supportive services. METHODS: English-speaking patients with a confirmed history of gynecologic cancer completed PROMIS ePROs on iPads in the waiting area of an outpatient gynecologic oncology clinic. Symptom scores were calculated for each respondent and grouped using documented severity thresholds. Response data was compared with clinicopathologic characteristics across symptom domains. Severely symptomatic patients were offered referral to ancillary services and asked to complete post-exposure surveys assessing acceptability of the ePRO. RESULTS: Of the 336 patients who completed ePROs, 35% had active disease and 19% had experienced at least one disease recurrence. Sixty-nine percent of the cohort demonstrated moderate to severe physical dysfunction (60%), pain (36%), fatigue (28%), anxiety (9%), depression (8%), and sexual dysfunction (32%). Thirty-nine (12%) severely symptomatic patients were referred to services such as psychiatry, palliative care, pain management, social work or integrative oncology care. Most survey respondents identified the ePROs as helpful (78%) and easy to complete (92%). CONCLUSIONS: Outpatient PROMIS ePRO administration is feasible and acceptable to gynecologic oncology patients and can help identify severely symptomatic patients for referral to ancillary support services.

Propensity-matched analysis of patient-reported outcomes for neoadjuvant chemotherapy prior to radical cystectomy.

PURPOSE: To evaluate patient-reported outcomes (PROs) for bladder cancer patients undergoing neoadjuvant chemotherapy (NAC) prior to radical cystectomy (RC) using longitudinal data and propensity-matched scoring analyses. METHODS: 155 patients with muscle-invasive bladder cancer scheduled for RC completed the European Organization for Research and Treatment of Cancer questionnaires, EORTC QLQ-C30, EORTC QLQ-BLM30, Fear of Recurrence Scale, Mental Health Inventory and Satisfaction with Life Scale within 4 weeks of surgery. A propensity-matched analysis was performed comparing pre-surgery PROs among 101 patients who completed NAC versus 54 patients who did not receive NAC. We also compared PROs pre- and post-chemotherapy for 16 patients who had data available for both time points. RESULTS: In propensity-matched analysis, NAC-treated patients reported better emotional and sexual function, mental health, urinary function and fewer financial concerns compared to those that did not receive NAC. Longitudinal analysis showed increases in fatigue, nausea and appetite loss following chemotherapy. CONCLUSION: Propensity-matched analysis did not demonstrate a negative effect of NAC on PRO. Several positive associations of NAC were found in the propensity-matched analysis, possibly due to other confounding differences between the two groups or actual clinical benefit. Longitudinal analysis of a small number of patients found small to modest detrimental effects from NAC similar to toxicities previously reported. Our preliminary findings, along with known survival and toxicity data, should be considered in decision-making for NAC.

Perceptions of Response Burden Associated with Completion of Patient-Reported Outcome Assessments in Oncology.

BACKGROUND: Patient response burden is often raised as a human subject concern in consideration of the length or complexity of patient-reported outcome (PRO) instruments used in oncology. OBJECTIVES: To quantify patient response burden and identify its predictive factors. METHODS: Data were collected presurgically during a prospective trial that used a comprehensive symptom and health-related quality-of-life (HRQOL) PRO assessment. A subset of patients also completed HRQOL interviews. Response burden was captured using an internally developed six-item instrument. Demographic and clinical characteristics as well as HRQOL scores were examined as potential predictors using hierarchical regression. Response burden was used to predict participant dropout at the first follow-up interval. RESULTS: A total of 275 patients (mean age 67.5 years; 23.6% female) completed surveys (n = 126) or surveys in addition to interviews (n = 149). Patients experienced low response burden (mean 12.19 ± 11.65). Repetitive questions were identified by 60 patients (21.8%), whereas 31.6% indicated that additional information should be gathered; 35 patients (12.7%) identified repetitive questions and expressed a desire for additional items. Low self-reported cognitive function was a significant predictor of higher response burden (ß = -0.20; t(270) = -3.38; P = 0.01; model-adjusted R2 = 0.04). Response burden was not a significant predictor of study dropout. CONCLUSIONS: Despite completing a large battery of PRO measures and interviews, patients reported minimal response burden, with nearly one-third expressing that more questions should have been asked. Patients with lower cognitive function are more likely to report higher response burden when completing PRO measures. Further examination of patient characteristics related to response burden may reveal useful pathways for tailoring patient-centered interventions.

Advancing quality-of-life research by deepening our understanding of response shift: a unifying theory of appraisal.

Studies of response-shift phenomena in quality-of-life (QOL) research have grown steadily in the more than two decades of research. As a field, we have been calling a lot of different approaches "response shift" over the years, but the only approach that fully embodies the foundational (Sprangers and Schwartz, Soc Sci Med 48(11):1507-1515, 1999) theoretical model is appraisal. According to the definition proposed in this model, response shift is about individual cognitive change. This paper presents the argument that all response-shift research models need to be grounded in an understanding of cognitive appraisal. We present a reasoned argument for why appraisal is fundamental to QOL response-shift research. We describe current measurement and analytic methods for working with appraisal, and how these methods can be integrated into the current response-shift statistical 'tool box.' We propose future research directions on theory, methods, and cross-calibration of group- and individual-level methods. There are currently three tools available in multiple languages for assessing QOL appraisal processes. They have been tested and used to assess response shift in empirical studies of ~ 7000 people with chronic illness. The study findings illustrate how appraisal theory and methods can facilitate methodological investigations of and to enhance other response-shift detection methods. Future research directions are proposed to enrich QOL theory, response-shift methods, and interpretation of QOL change over time. Appraisal theory and methods are the closest approximation to a response-shift 'gold standard.' They provide the foundation for understanding response shift and point to a unified theory of QOL.

Leveraging Latent Dirichlet Allocation in processing free-text personal goals among patients undergoing bladder cancer surgery.

PURPOSE: As we begin to leverage Big Data in health care settings and particularly in assessing patient-reported outcomes, there is a need for novel analytics to address unique challenges. One such challenge is in coding transcribed interview data, typically free-text entries of statements made during a face-to-face interview. Latent Dirichlet Allocation (LDA) offers statistical rigor and consistency in automating the interpretation of patients' expressed concerns and coping strategies. METHODS: LDA was applied to interview data collected as part of a prospective, longitudinal study of QOL in N = 211 patients undergoing radical cystectomy and urinary diversion for bladder cancer. LDA analyzed personal goal statements to extract the latent topics and themes, stratified by time, and on things patients wanted to accomplish and prevent. Model comparison metrics determined the number of topics to extract. RESULTS: LDA extracted seven latent topics. Prior to surgery, patients' priorities were primarily in cancer surgery and recovery. Six months after the surgery, they were replaced by goals on regaining a sense of normalcy, to resume work, to enjoy life more fully, and to appreciate friends and family more. LDA model parameters showed changing priorities, e.g., immediate concerns on surgery and resuming employment decreased post-surgery and were replaced by concerns over cancer recurrence and a desire to remain healthy and strong. CONCLUSIONS: Novel Big Data analytics such as LDA offer the possibility of summarizing personal goals without the need for conventional fixed-length measures and resource-intensive qualitative data coding.

The comparative effectiveness of decision aids in diverse populations with early stage prostate cancer: a study protocol for a cluster-randomized controlled trial in the NCI Community Oncology Research Program (NCORP), Alliance A191402CD.

BACKGROUND: Treatments for localized prostate cancer present challenging tradeoffs in the face of uncertain treatment benefits. These options are best weighed in a process of shared decision-making with the patient's healthcare team. Minority men experience disparities in prostate cancer outcomes, possibly due in part to a lack of optimal communication during treatment selection. Decision aids facilitate shared decision-making, improve knowledge of treatment options, may increase satisfaction with treatment choice, and likely facilitate long-term quality of life. METHODS/DESIGN: This study will compare the effect of two evidence-based decision aids on patient knowledge and on quality of life measured one year after treatment, oversampling minority men. One decision aid will be administered prior to specialist consultation, preparing patients for a treatment discussion. The other decision aid will be administered within the consultation to facilitate transparent, preference-sensitive, and evidence-informed deliberations. The study will utilize a four-arm, block-randomized design to test whether each decision aid alone (Arms 1 and 2) or in combination (Arm 3) can improve patient knowledge and quality of life compared to usual care (Arm 4). The study, funded by the National Cancer Institute's Community Oncology Research Program (NCORP), will be deployed within select institutions that have demonstrated capacity to recruit minority populations into urologic oncology trials. DISCUSSION: Upon completion of the trial, we will have 1) tested the effectiveness of two evidence-based decision aids in enhancing patients' knowledge of options for prostate cancer therapy and 2) estimated whether decision aids may improve patient quality of life one year after initial treatment choice. TRIAL REGISTRATION: Clinicaltrials.gov: NCT03103321 . The trial registration date (on ClinicalTrials.gov) was April 6, 2017.

Can a gastric cancer risk survey identify high-risk patients for endoscopic screening? A pilot study.

BACKGROUND: A questionnaire that distinguishes how variability in gastric cancer prevalence is associated with ethnicity/birth country/immigration/cultural diet along with known risk factors may improve targeting populations for gastric cancer screening in the United States. METHODS: Existing literature was used to identify the item pool. Cluster analysis, focus groups, and cognitive interviewing were used to reduce collinear items and refine the questionnaire. Logistic regression analysis was used to determine which items distinguished gastric cancer cases from the primary care and community controls. RESULTS: The results of analysis of data from 40 cases and 100 controls (primary care = 47; community = 53) were used to reduce the 227 item pool to 12 items. After ranking these variables using model bootstrapping, a logistic regression model using the highest ranked eight variables was chosen as the final model. Older age, foreign nativity, daily consumption of cultural food at ages 15-18, less than high-school education, and greater acculturation were significantly associated with being a gastric cancer case compared with the controls. CONCLUSIONS: An eight-item survey that addresses gastric cancer risk factors, ethnicity, cultural habits, and immigration patterns has potential to identify high-risk persons from multicultural areas within the US, who might benefit from endoscopic screening for gastric cancer.

Assessing reserve-building pursuits and person characteristics: psychometric validation of the Reserve-Building Measure.

AIMS: A growing body of research suggests that regularly engaging in stimulating activities across multiple domains-physical, cultural, intellectual, communal, and spiritual-builds resilience. This project investigated the psychometric characteristics of the DeltaQuest Reserve-Building Measure for use in prospective research. METHODS: The study included Rare Patient Voice panel participants. The web-based survey included the Reserve-Building Measure with one-week re-test, measures of quality of life (QOL) and well-being (PROMIS General Health; NeuroQOL Cognitive Function and Positive Affect & Well-Being short-forms; Ryff Environmental Mastery subscale); and the Big Five Inventory-10 personality measure. Classical test theory and item response theory (IRT) analyses investigated psychometric characteristics of the Reserve-Building Measure. RESULTS: This North American sample (n = 592) included both patients and caregivers [mean age = 44, SD 19)]. Psychometric analyses revealed distinct subscales measuring current reserve-building activities (Active in the World, Games, Outdoors, Creative, Religious/Spiritual, Exercise, Inner Life, Shopping/Cooking, Passive Media Consumption,), past reserve-building activities (Childhood Activities, Achievement), and reserve-related person-factors (Perseverance, Current and Past Social Support, and Work Value). Test-retest stability (n = 101) was moderately high for 11 of 15 subscales (ICC range 0.78-0.99); four were below 0.59 indicating a need for further refinement. IRT analyses supported the item functioning of all subscales. Correlational analyses suggest the measure's subscales tap distinct constructs (range r = 0.11-0.46) which are not redundant with QOL, well-being, or personality (range r = 0.11-0.48). CONCLUSIONS: The Reserve-Building Measure provides a measure of activities and person-factors related to reserve that may potentially be useful in prospective research.