Quality of Life Research最新文献

Introduction: Cancer survivors may experience loneliness, which can impair the capacity to self-regulate lifestyle behaviors, induce systemic inflammation, and deteriorate mental and physical health. Previous studies have found an association between loneliness and health outcomes in the general population, but few studies have examined health effects of loneliness among cancer survivors and its differential effects by sociodemographic characteristics.

Methods: In a cross-sectional analysis of All of Us Research program data, we examined the association between loneliness (defined using the UCLA-3 items loneliness scale) and overall quality of life and four other health outcomes among cancer survivors aged ≥ 18 years in the United States (N = 17,367).

Results: Lonely cancer survivors were more likely to have fair/poor overall quality of life, severe pain, severe fatigue, and fair/poor physical and mental health compared to non-lonely cancer survivors, controlling for multiple health behaviors and sociodemographic factors. Models stratified by sociodemographic characteristics generally showed similar results, but differences existed between some age, sex, and living arrangement subgroups. For example, the association between loneliness and fair/poor mental health was stronger among older survivors (≥ 65 years, AOR = 5.30; 95% CI = 4.30-6.54) than younger survivors (18-39 years, AOR = 3.07; 95% CI = 1.95-4.85); p for difference < 0.05. The association between loneliness and severe fatigue was stronger among survivors living alone (AOR = 3.15; 95% CI = 2.33-4.25) than survivors living with others (AOR = 2.16; 95% CI = 1.81-2.59); p < 0.05.

Conclusions: Loneliness generally showed adverse association with all evaluated health outcomes, but the magnitude of associations varied between certain subpopulations. Results of this study suggest the need for screening and monitoring of loneliness among cancer survivors.

Purpose: To examine sex differences in health-related quality of life (HRQoL) among patients surgically treated for renal cell carcinoma (RCC) in Sweden, utilizing data from the National Swedish Kidney Cancer Register (NSKCR).

Methods: In this study of 4658 surgically treated RCC patients, data on HRQoL, clinical, demographic, and socioeconomic characteristics were retrieved from the NSKCR for patients undergoing surgical treatment between January 2016, and April 2024. HRQoL was measured using the 14- and 19-item versions of the Functional Assessment of Cancer Therapy - Kidney Symptom Index (FKSI-14/19) instrument six months after surgery. The association between sex and HRQoL was estimated using linear regression. Separate analyses were performed for the FKSI-14 and FKSI-19 total scores and underlying domains.

Results: In total, 3086 (66.3%) men and 1572 (33.7%) women were included. After adjusting for clinical, demographic, and socioeconomic characteristics, male sex was significantly associated with higher HRQoL. Specifically, men had higher scores, indicating fewer symptoms, for physical and mental symptoms according to FKSI-14 (P < 0.001), and for physical (P < 0.001) and emotional (P < 0.001) disease-related symptoms, as well as treatment side effects (P < 0.022), according to FKSI-19. Total HRQoL was significantly higher in men, according to both the FKSI-14 (P < 0.001) and the FKSI-19 (P < 0.001).

Conclusions: HRQoL differed significantly between men and women six months after surgery, with men reporting higher HRQoL, even after accounting for clinical, demographic, and socioeconomic factors. Healthcare professionals should be aware of the risk of lower HRQoL among female patients.

Purpose: Information on factors contributing to quality of life (QOL) informs meaningful patient-centred care. We evaluated factors influencing QOL in individuals with developmental and epileptic encephalopathy (DEE) and other severe neurodevelopmental encephalopathy conditions using hypothesis-free regression tree analysis.

Methods: A questionnaire was completed by 242 caregivers of individuals two years or older. QOL was measured using the Quality of Life Inventory-Disability (QI-Disability). Independent variables described health, functional abilities and daily activities. The R package rpart was used to build the regression trees to explore the most influential factors associated with QOL.

Results: Median age was 8.8y (interquartile range 4.6-14.9 y). Mean total QI-Disability score was 60.2 ± 14.1 out of a total possible score of 100. The subgroup with the lowest QOL scores comprised individuals with low (raw score < 4) cognition scores measured with the Developmental Profile-4 (n = 52, mean score 46.4) whereas higher QOL scores were achieved by individuals with higher cognition scores and capacity to engage actively when using a touchscreen (n = 123, mean score 67.5).

Conclusion: Regression tree analysis suggests that cognition and use of touchscreens were important factors for QOL. Findings suggest small neurodevelopmental and functional gains may meaningfully improve quality of life for individuals with severe neurodevelopmental encephalopathy.

Purpose: Many current care assessment frameworks prioritise clinical and organisational outcomes over patient perspectives. This study aimed to identify gaps in existing patient-centred assessment methods and to develop a multilevel framework aligning quality evaluation with patient-defined priorities across macro (policy), meso (organisational), and micro (individual) levels, and technological levels.

Methods: We used a primarily qualitative design, conducting a literature review of patient-centred integrated care assessment studies and integrating these findings with a longitudinal case study that examined how the patient's perspectives were documented across multiple health information systems, synthesising evidence on existing practices with insights into how patient perspectives are integrated and represented for a comprehensive understanding.

Results: In total, 32 studies were included. The review revealed ongoing misalignment between systemic evaluation practices and patient-defined outcomes, particularly for individuals with complex physical and mental health needs. Minimal patient involvement in developing evaluation criteria reflected a disconnect between policy-level targets and individual patient well-being. This misalignment was echoed in the case study, which underscored that personal goals and non-clinical needs were often unrecorded, highlighting the gap between evaluation metrics and genuinely patient-centred care.

Conclusion: Integrated care quality assessment remains misaligned with patient-defined outcomes. We propose Patient-Reported Integrated Measures (PRIMs) as a conceptual contribution. PRIMs complement existing Patient-Reported Outcome Measures (PROM) and Patient-Reported Experience Measures (PREM) by capturing multidimensional outcomes that matter to patients and ensuring evaluation aligns with their goals. Integrating PRIMs into health information systems and research agendas can realign care evaluation with evolving patient priorities, thereby reducing the risk of leaving patients behind in future healthcare reforms.

Purpose: Ring 14 Syndrome is a rare genetic disorder caused by an anomaly in the 14th chromosome that often leads to intractable epilepsy, moderate to severe intellectual disabilities, slow growth, ocular abnormalities, and more. The presentation and severity of symptoms can greatly vary, making Ring 14 syndrome a complex condition to understand, manage, and treat. Conceptual disease models, also known as disease concept models, provide a formal framework based on the lived experience of patients and families that helps to describe the functional and quality of life impacts of a disease across various domains using qualitative methods.

Methods: To inform the development of a conceptual disease model on Ring 14 Syndrome, 17 caregivers representing 12 patients with Ring 14 Syndrome participated in semi-structured interviews over the course of four months. Data were analyzed using a mix of deductive and inductive inquiry through NVivo Software. Concepts were grouped into domains of patient symptoms and caregiver symptoms, with patient symptoms consisting of two sub-domains: functional impacts (which included cognitive impacts, physical impacts, behavioral impacts, and social-emotional-expressive impacts) and quality of life impacts (which included ADLs, medication side effects, and school/social/community). Caregiver impacts were categorized by mental health, family and social aspects, and medical care.

Results: Patient impacts listed under the cognitive and physical categories align closely with patient impacts referenced in the medical literature. However, impacts listed under the patient quality of life domain as well as the caregiver domain are inadequately represented in the literature, suggesting that the patient perspective has previously been neglected in the medical literature on Ring 14 Syndrome. Further, the numerous mental and physical health impacts on caregivers, grouped with the negative quality of life impacts on Ring 14 patients themselves, warrants further attention, as both have profound effects on health-related quality of life. Finally, while many of the impacts listed in the conceptual disease model may be considered negative aspects of the disorder, there were also positive impacts identified (such as happy demeanor, resilience, and social support) by the community as well.

Introduction: Due to the ongoing global refugee crisis, around 400 million children are currently displaced. We investigate domains of quality of life (QoL) in two groups of displaced children; children living with their caregivers in Closed Control Access Centre (CCAC) Mavrovouni and unaccompanied minors (UAMs) in designated shelters on Lesvos, Greece.

Methods: A mixed-methods study using PROMIS^® to quantitatively assess domains of QoL compared to a reference group by using a one-sample Wilcoxon sign-rank test. Associated variables were identified by multivariable linear regression analyses. Open questions were added to UAMs to qualitatively identify elements influencing QoL.

Results: A total of 111 children (N = 94) and UAMs (N = 17) participated. Children across all age groups showed significantly worse scores in various domains compared to the reference group. The youngest group (1-4 years) report more Depressive symptoms but better peer relationships, while the 5-18 year groups reported higher levels of anger, anxiety, depressive symptoms, and pain behavior. Adolescents (8-18 years) reported higher scores on meaning and purpose. A longer duration in camp was associated with higher scores on anxiety and depressive symptoms. UAMs mention separation from family as negatively influencing their mental health. They mention future goals, hope and social support as central to their sense of meaning and purpose.

Conclusion: Displaced children report high levels of anger, anxiety, pain behavior, and depressive symptoms, a prolonged stay in the camps even worsens these outcomes. This underscores the need for tailored interventions to enhance the overall well-being of this vulnerable population.

Purpose: Recently developed minimal important change (MIC) estimation methods recover the mean individual MIC in a sample. These methods are the adjusted predictive modeling (APM) method and the longitudinal confirmatory factor analysis (LCFA) method. Both methods require LCFA of patient-reported outcome measure (PROM) data. In the APM-method, LCFA is used to estimate the reliability of the transition ratings, whereas in the LCFA-method, LCFA is used to estimate the latent MIC. However, LCFA cannot be performed if the PROM is a single item measure (SIM). Adding an auxiliary variable, that is correlated with the PROM, to the LCFA-model may be a solution. We developed three different LCFA-models in which an auxiliary variable is included. In this simulation study, we assessed the performance of the APM- and LCFA-methods to recover the true MIC of an SIM. We applied both methods to a real dataset in which the SIM was a numeric rating scale for pain.

Methods: We simulated 15,552 samples, varying in 11 parameters, and estimated the APM-based and LCFA-based MICs.

Results: The APM-method performed well, except if the proportion improved was high or low, and the present state bias (PSB) was high. The LCFA-method performed well, irrespective of the proportion improved and the PSB. In the real data, the LCFA-based MIC was 17 (on a 100-point scale), whereas the estimated APM-based MIC was 4 points higher, probably due to a high proportion improved and a high PSB.

Conclusion: The MIC of an SIM can be accurately estimated using an auxiliary PROM.

Purpose: Individuals with bipolar disorder often experience reduced quality of life (QoL). Transcranial direct current stimulation (tDCS) is a promising non-invasive treatment for bipolar depression that is portable, safe, and suitable for use at home. We developed a home-based tDCS protocol with real-time remote supervision and examined its effect on QoL in bipolar depression.

Methods: In an open-label design, 44 participants (31 women) with bipolar depression of at least a moderate severity received 21 sessions of home-based tDCS (2 mA, 30 min, F3 anode/F4 cathode) over 6 weeks, with a follow-up visit conducted 5 months from baseline. QoL was assessed using the quality of life enjoyment and satisfaction questionnaire (Q-LES-Q) at baseline, week 2, end of treatment, and follow-up session. Baseline and post treatment scores were compared with healthy control participants (28 adults; 17 women).

Results: At baseline and at the end of treatment, bipolar participants showed a significantly lower Q-LES-Q score than healthy controls (p < 0.001). Within the bipolar group, there was a significant improvement in total Q-LES-Q scores (p < 0.001) and across multiple domains by week 6 and remained elevated at follow-up. Changes in Q-LES-Q were no longer significant after adjustment for depressive symptoms.

Conclusion: A 6-week course of supervised home-based tDCS was associated with significant QoL improvements in bipolar depression, which appeared to be closely linked to reduction in depressive symptoms. Randomized, sham-controlled trials are warranted to clarify the specific contribution of tDCS to improve QoL in bipolar depression.