Quality of Life Research最新文献

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.

Purpose: Patient reported outcome measures (PROMs) are increasingly used in oncology care, but pharmacists providing direct patient care have been overlooked. We engaged pharmacists and adults receiving oral oncolytics (chemotherapy medication taken by mouth) to develop a SmartForm© in the electronic health record (EHR) for PROM monitoring. Pharmacists verbally ask the patient side effect questions during routine telehealth encounters and enter responses in real time.

Methods: Our development process was guided by the Knowledge to Action Framework. In phase 1 (Knowledge Inquiry), we prioritized side effects to assess in the EHR SmartForm© via interviews with patients and a Delphi panel with pharmacists. Adults receiving oral oncolytics for breast (n = 12), thoracic (n = 12), or hematological (n = 12) cancer were interviewed, with purposeful sampling for adults who were aged 65 + years or Black. Interviews were coded with content analysis. We conducted three Delphi rounds, with 11/19, 13/19, and 19/19 pharmacists, respectively. In phase 2 (Knowledge Synthesis), PROM items were selected and the EHR SmartForm© programmed. In phase 3 (Knowledge Tailoring), we conducted usability testing with pharmacists.

Results: Pharmacists and patients were consistent in prioritizing side effects of oral oncolytics and 10 were retained. Patients advocated asking whether they can do their usual activities, while pharmacists added medication adherence. Usability testing yielded suggestions to simplify the SmartForm©.

Conclusion: By presenting screenshots of our SmartForm©, our findings are useful to other healthcare systems looking for a PROM solution integrated in the EHR, with a reasonable pharmacist/clinician workload, and no requirement for patients to have internet access/comfort.

Purpose: The relationship between quality of life (QoL) and frailty has previously been investigated cross-sectionally and longitudinally as unidirectional where QoL depends upon frailty and where frailty depends on QoL. Here a bidirectional relationship is examined.

Methods: This work uses a latent curve model with structured residuals to address the bidirectional association between QoL and frailty in older English people considering within-person and group levels. The study measures frailty using a functional frailty measure and quality of life using CASP-12. The sample size is 17,529.

Results: There is a strong relationship between QoL (Quality of Life) and frailty, which is almost linear and inversely proportional over time. Although the cross-lagged coefficients from QoL to frailty and vice versa showed statistical significance, the impact was found to be minimal. The time between assessments (which are two years apart) and/or the few observations available per individual may have impacted the effect of this relationship. When accounting for gender, age, net wealth, and multimorbidity, some variations in the results were observed at the group level but not at the within-person level.

Conclusion: The study provides empirical evidence that supports a bidirectional association between QoL and frailty in older individuals who reside at home. These results offer valuable insights for healthcare providers, as participants did not exhibit an advanced need for health services. Additionally, involving participants in evaluating and assessing these services enhances their effectiveness and overall benefit.

Purpose: Despite advancements in antiretroviral therapy (ART) that extend life expectancy, older adults with HIV (OAHIV) face elevated cardiovascular disease risks. This study examines the impact of arterial stiffness on health-related quality of life (HRQoL) among OAHIV in rural Northern Thailand.

Methods: We conducted a 5-year prospective cohort study from 2015, including 338 OAHIV aged ≥ 50 without prior cardiovascular disease who received ART in 12 community hospitals in Chiang Mai. Arterial stiffness was assessed using Cardio-Ankle Vascular Index (CAVI), with values ≥ 8 indicating significant stiffness. HRQoL was measured using the MOS-HIV Health Survey at baseline, one year, and five years. Analysis adjusted for HIV/AIDS severity, cardiovascular comorbidities, and socioeconomic factors.

Results: Elevated CAVI (≥ 8) was associated with lower HRQoL scores. The elevated CAVI group showed lower physical health summary scores (average difference:- 2.2 points, 95%CI: - 3.5 to - 0.9) and mental health summary scores (average difference: - 1.2 points, 95%CI: - 2.2 to - 0.3) compared to the normal CAVI group (CAVI < 8).

Conclusion: Findings highlight the importance of routine screening for arterial stiffness and support the implementation of comprehensive care strategies that incorporate cardiovascular risk management. Such approaches could guide public health interventions and clinical practices to enhance the overall health and well-being of OAHIV, potentially through targeted cardiovascular risk reduction programs and personalized care plans. However, the study's regional focus in rural Northern Thailand and participant attrition over the five-year period limit the generalizability of the findings. Future research in diverse settings with larger sample sizes is needed to confirm these results.

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: 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.

Purpose: The Geriatric Depression Scale (GDS) is widely used to screen for depression in clinical practice and to assess symptoms of depression in research about older adults. To determine whether the 15-item GDS can be used in adults with dementia, this study investigated whether item- or test-level bias in the GDS-15 is associated with the respondent's level of cognitive impairment.

Methods: Using a large U.S. sample of 24,674 adults, we first conducted sample matching procedures between the five groups defined by CDR® Dementia Staging Instrument scores to control for potential confounding effects of common demographic variables. Then, we employed confirmatory factor analysis (for single-group and configural-invariance models only) and item response theory models to test potential differential item/test functioning effects associated with the GDS-15 across the five CDR groups. Practical consequences of the identified biases were quantified using sample-based Cohen's d effect sizes and misclassification rates.

Results: In general, people with higher CDR scores were older and had fewer years of education. In comparison to the normal cognition group (CDR-0), negligible biases in GDS-15 scores were found for the groups with questionable, mild, or moderate cognitive impairment (CDR-0.5/1/2). For individuals with severe cognitive impairment (CDR-3), their responses were inconsistent with the normal cognition group and their depression scores were significantly biased with a small-to-medium effect size.

Conclusions: The GDS-15 can be used to assess depression in individuals with mild or moderate cognitive impairment, but not in individuals with severe cognitive impairment.

Purpose: Determining if group-level differences in health outcomes are meaningful has recently been neglected in favour of determining if individuals have experienced a meaningful change. We explore interpretation of a meaningful between-group difference (MBGD) in clinical outcome assessment scores, primarily in the context of randomized clinical trials.

Methods: We constructed a series of possible 'viewpoints' on how to conceptualize MBGD thresholds. Each viewpoint is discussed critically in terms of potential advantages and disadvantages, with simulated data to facilitate their consideration.

Results: Five viewpoints are presented and discussed. The first considers whether thresholds for meaningful within-individual change over time can be equally applied at the group-level, which is shown to be untenable. Viewpoints 2-4 consider what would have to be observed in treatment groups to conclude a meaningful between-group difference has occurred, framed in terms of the proportion of patients perceiving that they had meaningfully improved. The final viewpoint considers an alternative framework where stakeholders are directly questioned on the meaningfulness of varying magnitudes of between-group differences. The choice of a single threshold versus general interpretative guidelines is discussed.

Conclusion: There does not appear to be a single method with clear face validity for determining MBGD thresholds. Additionally, the notion that such thresholds can be purely data-driven is challenged, where a degree of subjective stakeholder judgement is likely required. Areas for future research are proposed, to move towards robust method development.

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.