Quality of Life Research最新文献

Purpose: As cancer survivorship increases, there is a need for simple tools to measure and promote healthy behaviors. We created a wellness behavioral tool (the SMILE Scale) to encourage self-monitoring of wellness behaviors. This study aimed to determine the feasibility of collecting daily self-reported SMILE Scale data and weekly quality of life data among patients with cancer. We also aimed to measure the association between SMILE Scale responses and validated health-related quality of life (HRQOL) tools (PROMIS-29 + 2 and SymTrak-8) as a pilot test of the hypothesis that increased wellness behaviors may impact quality of life.

Methods: We surveyed 100 patients with cancer at the Indiana University Simon Comprehensive Cancer Center. Participants were asked to complete daily SMILE Scale assessments over a two-week period, as well as weekly PROMIS-29 + 2 and SymTrak-8 surveys. The primary endpoint was the SMILE Scale completion rate. Secondary endpoints in this single-arm pilot study included correlations between the SMILE Scale and other HRQOL tools.

Results: Daily completion rate of the SMILE Scale ranged from 57% to 65% of participants over a 14-day period. Among the 61% of participants who completed SMILE on day 1, 87% completed SMILE on 10 of 14 days. By end of study, participants who self-reported more wellness behaviors (i.e., higher daily SMILE scores) demonstrated significantly higher PROMIS physical health (p = 0.003), higher PROMIS mental health (p = 0.008), and lower (better) SymTrak total symptom burden (p = 0.006). Further, among those who completed at least 1 of 14 daily SMILE assessments, quality of life significantly improved over the two-week period for PROMIS mental health (p = 0.018) and SymTrak total symptom burden (p = 0.014).

Conclusion: The SMILE Scale completion rate did not satisfy our pre-planned ≥70% threshold for feasibility; however, the rate for completing SMILE at least once during the 14 days (77%) met this threshold. Participants with higher average daily SMILE scores had significantly better scores across other validated HRQOL tools. While these results may be correlative and not causative, this suggests a potential physical and mental health benefit for delivering the SMILE Scale in clinical practice to help encourage healthy behaviors and warrants testing the SMILE Scale's impact in future studies.

Purpose: Hepatocellular carcinoma (HCC) is the third-leading cause of cancer-related deaths globally. Patients are often diagnosed with advanced disease, in which systemic and locoregional therapies are commonly used as first-line treatment. Such treatments can cause adverse events (AEs) that negatively affect quality of life (QoL), which is particularly undesirable where prognosis is poor. The aim of the present study was to evaluate the impact of common AEs on QoL in patients with HCC.

Methods: Data from the SARAH randomized controlled trial (RCT) were analyzed. Given the large number of distinct AEs that occurred in the trial, AEs were grouped as in the SARAH trial and prioritized using principal component analysis (PCA). Linear mixed-effects models were then applied with age, ECOG status, and AEs as predictors of the QoL change as measured with the EORTC Core Quality of Life Questionnaire (QLQ-C30).

Results: The PCA resulted in the selection of 28 AEs for inclusion in the linear mixed-effects models. Of the 28 AEs, diarrhea, decreased appetite, abdominal pain, and palmar-plantar erythrodysesthesia syndrome (hand-foot syndrome) were significant drivers of reductions in QoL as measured using the QLQ-C30 global health status scale. Diarrhea, abdominal pain, and hand-foot syndrome were also significant drivers of reduced QoL outcomes.

Conclusion: The present analysis showed that diarrhea, decreased appetite, abdominal pain, and palmar-plantar erythrodysesthesia were significantly associated with reduced QoL in patients with unresectable HCC. Reducing the incidence and/or severity of these AEs should therefore be a key focus when selecting the optimal treatments for these patients.

Interpretation of patient-reported outcome (PRO) scores has been supported by identifying score thresholds or ranges that indicate clinical importance. There has been a recent focus on the estimation of meaningful within patient change (MWPC). While much attention has been focused on anchor-based methods, some researchers prefer that a lower bound to these estimates should exceed a change score that could be observed due to measurement error alone as a safeguard against misclassifying individual patients as changed when they have not. The standard error of measurement (SEM) is often used as the lower bound of anchor estimates. Here, we argue that the SEM is not an the best lower bound for MWPCs. Instead, statistically significant individual change as calculated by the reliable change index (RCI) should be used as the lower bound. Our argument is based on two points. First, conceptually, the SEM does not provide specific enough information to serve as a lower bound for MWPCs, which should be based on the level of observed score change that is unlikely to be due to chance alone. Second, the SEM is not appropriate for direct application to observed scores, and requires a multiplier when examining observed change instead of true change. We conclude with recommendations for using the RCI with a thoughtful range of p-values in combination with anchor estimates.

Purpose: To assess the association between professional reintegration and mental health, quality of life (QoL) and community reintegration of stroke survivors.

Methods: Using a cross-sectional study design, a structured questionnaire was administered to previously working stroke survivors, 18-24 months post-stroke. Data on sociodemographic characteristics, professional reintegration (prevalence of return to work (RTW), period of RTW, job placement, function at work, reintegration support, association of stroke with work and number of working hours), mental health (Hospital Anxiety and Depression Questionnaire), QoL (Stroke Specific Quality of Life Scale) and community integration (Community Integration Questionnaire) were reported by 553 stroke survivors.

Results: Twenty months after stroke, 313 (56.6%; 95%CI 52.4-60.8) stroke survivors had return to work. RTW was positively associated with both global and sub-domains scores of Community Integration Questionnaire (CIQ) (global CIQ β = 3.50; 95%CI 3.30-3.79) and with depressive symptomatology (β = 0.63; 95%CI 0.20-1.46) measured by the Hospital Anxiety and Depression Scale. No significant differences were found regarding QoL, according to RTW status. For those who RTW, no significant associations were found between any of the professional reintegration determinants assessed and mental health, QoL and community integration scores.

Conclusions: RTW seems to be associated to better community integration after stroke, but appears to be negatively associated to stroke survivor's mental health, namely considering depression symptoms. Future studies should explore the barriers to stroke survivors' RTW and the challenges and strategies used to overcome them, to allow the development of professional reintegration policies.

Purpose: Patient-reported outcome measures (PROMs) such as the Neurological Disorders Depression Inventory in Epilepsy (NDDI-E), a 6-item epilepsy-specific PROM, is used to screen for major depressive disorder symptoms for patients with epilepsy (PWE). The validity and interpretation of PROMs can be affected by differential item functioning (DIF), which occurs when subgroups of patients with the same underlying health status respond to and interpret questions about their health status differently. This study aims to determine whether NDDI-E items exhibit DIF and to identify subgroups of PWE that exhibit DIF in NDDI-E items.

Methods: Data were from the Calgary Comprehensive Epilepsy Program database, a clinical registry of adult PWE in Calgary, Canada. A tree-based partial credit model based on recursive partitioning (PCTree) was used to identify subgroups that exhibit DIF on NDDI-E items using patients' characteristics as covariates. Differences in the identified subgroups were characterized using multinomial logistic regression.

Results: Of the 1,576 patients in this cohort, 806 (51.1%) were female, and the median age was 38.0 years. PCTree identified four patient subgroups defined by employment status, age, and sex. Subgroup 1 were unemployed patients ≤ 26 years old, subgroup 2 were unemployed patients > 26 years, subgroup 3 were employed females, while subgroup 4 were employed male patients. The subgroups exhibited significant differences on education level, comorbidity index scores, marital status, type of epilepsy, and driving status.

Conclusion: PWE differed in their interpretation and responses to questions about their depression symptoms, and these differences were a function of sociodemographic and clinical characteristics.

Purpose: The purpose of this study was to use qualitative interviews to understand the experiences of adult women with sickle cell disease (SCD) through daily life and navigating the healthcare system.

Methods: We conducted semi-structured interviews with reproductive-aged women with SCD and performed thematic analysis.

Results: We analyzed interviews from 20 participants. Our data demonstrated three overarching themes: perceptions of disease, transitions of care, and stigma and bias. Participants identified feelings of both empowerment and powerlessness from SCD that evolved over time and globally impacted their lives. The transition from pediatric to adult care was a vulnerable period, both surrounding changes in disease character and challenges transitioning healthcare systems. Finally, participants faced discrimination and prejudice within SCD care, which manifested as disvaluing of their own disease expertise or perpetuation of a "drug-seeking" stereotype. In the context of this bias, some participants prioritized seeking same-race providers.

Conclusion: Experiences with SCD contribute significantly to daily quality of life in women with SCD, and ongoing care gaps exist in relation to their disease. Within our population, SCD as a physical and mental stressor requiring interdisciplinary support should not be underestimated. More robust systems to support the transition from pediatric to adult care are also necessary, both on a healthcare institution level and to support patients' engagement in their care. Finally, provider education and training on anti-racist practice and both recognizing and eliminating bias are essential to improving care of SCD patients. Possible interactions between sex, gender, and race in the experience of SCD warrant further exploration.

Purpose: To identify symptom clusters (SCs) in lung cancer patients undergoing chemotherapy and explore their impact on health-related quality of life (HRQoL).

Methods: Patients were invited to complete the Chinese version of the M.D. Anderson Symptom Inventory with the Lung Cancer Module and the Quality of Life Questionnaire-core 30. Network analysis was employed to identify SCs. The associations between SCs and each function of HRQoL were examined using the Pearson correlation matrix. Multiple linear regression was applied to analyze the influencing factors of each function of HRQoL.

Results: A total of 623 lung cancer patients who were receiving chemotherapy were recruited. The global health status of lung cancer patients was 59.71 ± 21.09, and 89.73% of patients developed symptoms. Three SCs (Somato-psychological SC, Respiratory SC, and Gastrointestinal SC) were identified, and Somato-psychological SC and Gastrointestinal SC were identified as influencing factors for HRQoL in lung cancer patients.

Conclusion: Most lung cancer patients who undergo chemotherapy experience a range of symptoms, which can be categorized into three SCs. The Somato-psychological SC and Gastrointestinal SC negatively impacted patients' HRQoL. Health care providers should prioritize monitoring these SCs to identify high-risk patients early and implement targeted preventive and intervention measures for each SC, aiming to alleviate symptom burden and enhance HRQoL.

Purpose: Meaningful score differences (MSDs), as defined by recent FDA guidance, can improve the interpretation of outcome measure scores and score changes. Well-accepted methods for estimating MSDs typically rely on external anchor variables, but the applications of these methods are limited in children and adolescents with rheumatic diseases. This project explored multiple candidate anchors for the PROMIS^® Pediatric measures of Physical Activity, Fatigue, Pain Interference, and Mobility for children with juvenile idiopathic arthritis (JIA) or systemic lupus erythematosus (SLE).

Methods: Longitudinal data were extracted from the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry. Candidate anchors included patient-reported domain-specific global impressions of change (GIC) along with other parent- and clinician-reported variables. Prior to MSD estimation, the quality of the anchors was assessed using a priori criteria (correlation ≥0.30, n≥10, <10% missing). Anchors meeting criteria were used to calculate MSDs.

Results: Among 289 children with JIA and 47 with SLE, the GIC did not meet criteria inhalf of the scenarios. Other candidate anchors performed slightly better. The calculated MSDs varied by external anchor across measures, diagnoses, and direction of change (better vs worse).

Conclusions: Many of the candidate external anchoring variables did not meet pre-specified criteria for calculating MSDs. Even for those that did, the choice of anchoring variable had a strong impact on the estimated MSD value and were different from other published values. As in adults, establishing pediatric MSDs requires selection of high-quality anchors, as changes in the variables used as anchors can impact MSD values and any subsequent score interpretations.

Background: Health utility is a key input used to perform cost-utility analysis (CUA), which is increasingly used to inform resource allocation decisions.

Objective: To identify the sources and elicitation methods of health utilities used in CUAs in oncology.

Methods: We used the Tufts Cost-Effectiveness Analysis registry to identify oncology CUAs published in Medline between 1976 and 2021. Eligible CUAs had to include an oncology population (based on ICD-10 codes), report health utilities, and be published in English. The references of cited health utilities were traced to identify the original health utility study and the method of utility elicitation. Characteristic of included CUAs were summarized and the methods to derive health utilities were compared.

Results: A total of 1512 CUAs in oncology were identified. The majority of CUAs (n = 1428, 94.4%) were model-based. Malignant neoplasm of breast and female genital organs was the most common population considered (n = 424, 28.0%). Among these CUAs, 8714 health utilities were identified. Upon review, the sources of 2096 (24.1%) health utilities could not be traced. Of the remaining 6618 health utilities, 1718 (26.0%) were obtained from original health utility study embedded in CUA in which expert opinion (n = 547, 31.8%) or EQ-5D (n = 479, 27.9%) was most frequently used. The 4900 health utilities (74.0%) that were cited from external studies were most often derived using the standard gamble (n = 1258, 25.7%) or EQ-5D (n = 1190, 24.3%).

Conclusion: Published health utilities are widely used in oncology CUAs, especially for model-based analyses. However, the identification, selection, and use of health utilities is suboptimal.

The experience sampling method (ESM) is increasingly used as a clinical tool in mental health care. Currently, ESM studies pay relatively little attention to assessing contextual factors, such as a person's experience and perception of events, activities, and social interactions. This has been referred to as the 'contextual black box'. However, personalized context information is essential for applications in clinical settings to gain insight in triggering and maintaining factors of psychopathology. Typically, ESM context items are designed for nomothetic research questions, to capture broad factors that are shared across individuals, such as 'unpleasant events'. We provide an overview of such nomothetic items. We argue that these items have limited clinical utility and describe idiographic alternatives to ESM context assessment to obtain more specific and personalized information about individual clients. Specifically, we present three existing idiographic ESM techniques to context assessment with clinical potential. First, we illustrate open-ended ESM items that prompt clients to fill in text, such as a description of a specific unpleasant event they experienced. Second, we describe personalized response options and self-learning items that ask clients to define personally relevant response categories, such as types of events the client finds unpleasant. Third, we describe personalized ESM items that client and clinician select or formulate together for concepts of interest. We discuss the advantages and disadvantages of these idiographic techniques. Additionally, we suggest future directions for clinical research aiming to address the 'contextual black box' and enhance the potential of ESM in mental health care.