Quality of Life Research最新文献

Purpose: To evaluate changes in health-related quality of life (HRQoL) of different patient groups, as measured using the EuroQoL (EQ5D) during outpatient multidisciplinary rehabilitation.

Methods: Patients with acquired brain injury, chronic pain, neurodegenerative diseases or oncological diagnoses, who received outpatient multidisciplinary rehabilitation, were included in a multi-center prospective observational cohort study. They completed the EQ5D, consisting of an index and a Visual Analogue Scale (VAS), at the start of outpatient rehabilitation (T0) and 6 months thereafter (T1), and two perceived change questions (about quality of life and about general health) at T1.

Results: Both EQ5D index and VAS improved for the total sample (n = 419, 68.8% females, mean age 54.5 years) and for each patient group, with the exception of the EQ5D VAS in patients with neurodegenerative diseases. The latter group showed less improvement, as measured on the EQ5D index, than patients with chronic pain (p = 0.004), and less on VAS compared to the other patient groups (all p < 0.05). At an individual level, 76.8% (304/396) of all patients reported improvement on the perceived change question about quality of life and 279/419 (66.6%) on the perceived change question about general health. Again, patients with neurodegenerative diseases had the lowest percentages (49/83 (59.0%) and 39/85 (47.0%), respectively).

Conclusion: All patient groups improved on HRQoL during outpatient multidisciplinary rehabilitation, both at group and individual level. However, patients with neurodegenerative diseases showed slightly less improvement than other patient groups, which may reflect the progressive nature of their disease rather than lower rehabilitation effectiveness.

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.