Family-oriented care and health-related quality of life for women with gynaecological cancer: A cross-sectional mixed-method study.

AIMS: This study aims to describe the experiences of women with gynaecological cancer regarding family-oriented care (FOC) and how they rated their health-related quality of life (HRQoL) using a 15D instrument (15D©). DESIGN: A cross-sectional mixed-method study. METHODS: The data were collected by electronic surveys of two Finnish cancer associations from gynaecological cancer patients (n = 53). The qualitative data were analysed using thematic analysis. The HRQoL answers were analysed statistically using IBM SPSS Statistics (Version 27). RESULTS: The results emphasized that FOC is not yet part of the care process. Furthermore, comprehensive encounters are lacking, and the experience of being a woman is forgotten during the care process. The results of the HRQoL analysis suggest that distress and the discomfort and symptoms of cancer patients are perceived as significant factors affecting their quality of life during different phases of treatment. Family status also has an impact on perceived quality of life, whereby those living alone gave worse ratings for the depression and vitality dimensions. CONCLUSION: In part, the quantitative and qualitative data supported each other, but the descriptions provided a more comprehensive view of issues that affect women in a more multidimensional way, such as sexual health issues. More research on the effectiveness of FOC is needed to develop the capacity for effective healthcare. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: This study was able to identify important areas for improvement in clinical practice from the perspective of patients and their families. REPORTING METHOD: This study was prepared and reported according to the STROBE checklist. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.

Normative values of EQ-5D-5L: in a Spanish representative population sample from Spanish Health Survey, 2011.

PURPOSE: To derive EQ-5D-5L Spanish population norms based on a national representative sample adjusted by age, gender and region. METHODS: A representative sample of the Spanish general population (n = 21,007) was used in a cross-sectional study. The source of data was the Spanish National Health Survey 2011-2012. All socio-demographic factors and clinical characteristics were carried to a descriptive analysis. All variables were stratified by region, gender and age-group. RESULTS: The utility value 1 is the most repeated (62%) in this representative population sample. This study showed a deterioration of health states as age increases. Overall, men reported better health status than women. In relation to ceiling effect by regions, there was little difference with the highest scores. Conversely, the lowest score corresponds to Galicia. CONCLUSIONS: The paper reports EQ-5D-5L normative data for Spanish general population, based on a national representative sample adjusted by region, gender and age-group. These results may serve as reference data of the population health status. A regional difference in health status could be observed, which might suggest that policies aiming to reduce regional inequalities are important.

USE OF PATIENT ASSESSED HEALTH-RELATED QUALITY OF LIFE INSTRUMENTS IN PROSTATE CANCER RESEARCH: A SYSTEMATIC REVIEW OF THE LITERATURE 2002-15.

OBJECTIVES: The objectives of this study were to identify and qualitatively describe, in a systematic literature review, published studies that collected prostate cancer patients' health-related quality of life (HRQoL) estimates by using validated, generic instruments. METHODS: Systematic searches of the literature were made using the Medline, Cochrane Library, PsycINFO, and CINAHL electronic databases from 2002 to 2015. RESULTS: The search identified 2,171 references, of which 237 were obtained for full-text assessment; thirty-three of these articles were deemed relevant and included in the systematic review. An indirect valuation method was used in 73 percent (n = 24) of the studies. The most commonly used HRQoL instrument with an indirect valuation method was the EuroQol (EQ-5D; n = 21), and the second most common was the 15D (n = 5). A direct valuation method was used in 48 percent (n = 16) of the studies. Of these, the Visual Analogue Scale (VAS) was the most often used (n = 10), followed by the Time-Trade-Off (n = 6). HRQoL scores varied in localized and early stage disease between 0.63 and 0.91, and in advanced or metastatic disease stage between 0.50 and 0.87. There was also variance in the HRQoL instruments and study methods used, which explains the large variance in HRQoL scores between the various disease stages. CONCLUSIONS: Although utility and quality-adjusted life-years gained are considered important measures of effectiveness in health care, the number of studies in which utilities of prostate cancer patients have been estimated using generic HRQoL instruments, based on either direct or indirect measurement of HRQoL, is fairly small.

Reference Values of the Quality of Life after Brain Injury (QOLIBRI) from a General Population Sample in Italy.

Traumatic brain injury (TBI) may affect the lives of the individuals concerned and their relatives negatively in many dimensions. Health-related quality of life (HRQoL) is a comprehensive and complex concept that can assess one's satisfaction with a broad range of areas of life and health. The Quality of Life after Traumatic Brain Injury (QOLIBRI) questionnaire is a TBI-specific measure for HRQoL which is used in research and health services worldwide. When evaluating self-reported HRQoL after TBI, reference values from a general population are helpful to perform clinically relevant evaluations and decisions about the condition of an affected person by comparing the patient scores with reference values. Despite the widespread use of the QOLIBRI, reference values have until now only been available for the Netherlands and the United Kingdom. The aim of this study was to validate the QOLIBRI for the general population in Italy and to provide reference values. An adapted form of the QOLIBRI was administered to 3298 Italians from a healthy general population using an online survey. Their scores were compared with those of 298 individuals post-TBI recruited within the international longitudinal observational cohort CENTER-TBI study in Italian hospitals, who completed the original questionnaire. The psychometric characteristics and the measurement invariance of the QOLIBRI were assessed. A regression analysis was performed to identify predictors relevant for HRQoL in the general population. Reference values were provided using percentiles. Measurement invariance analysis showed that the QOLIBRI captures the same HRQoL constructs in an Italian general population and Italian TBI sample from the observational Center-TBI study. Higher age, higher education and the absence of a chronic health condition were associated with higher QOLIBRI scores, suggesting better HRQoL. Reference values were provided for a general Italian population adjusted for age, sex, education and presence of chronic health conditions. We recommend using these for a better interpretation of the QOLIBRI score in clinical practice and research in Italy.

The Sarcoma-Specific Instrument to Longitudinally Assess Health-Related Outcomes of the Routine Care Cycle.

Patient-based health related quality of life (HRQoL) measurements are associated with an improvement in quality of care and outcomes. For a complex disease such as sarcoma, there is no disease-specific questionnaire available which covers all clinically relevant dimensions. Herein, we report on the development of an electronically implemented, sarcoma-specific instrument to assess health-related outcomes, which encompasses a combination of generic questionnaires tailored to the respective disease and treatment status covering the entire longitudinal care cycle. An interoperable digital platform was designed to provide a node between patients and physicians and to integrate the sarcoma-specific HRQoL instrument with patient and physician-based quality indicators to allow longitudinal structured real-world-time data evidence analytics. This approach enables the prediction modeling of disease, and by attributing cost tags to quality indicators, treatment effectiveness for a given disease will be directly correlated with financial expenses, which may ultimately lead to a more sustainable healthcare system.