Quality of Life Research最新文献

Health related quality of life (HRQoL) is increasingly assessed in oncology research and routine care, which has led to the inclusion of HRQoL in prediction models. This review aims to describe the current state of oncological prediction models incorporating HRQoL. A systematic literature search for the inclusion of HRQoL in prediction models in oncology was conducted. Selection criteria were a longitudinal study design and inclusion of HRQoL data in prediction models as predictor, outcome, or both. Risk of bias was assessed using the PROBAST tool and quality of reporting was scored with an adapted TRIPOD reporting guideline. From 4747 abstracts, 98 records were included in this review. High risk of bias was found in 71% of the publications. HRQoL was mainly incorporated as predictor (78% (55% predictor only, 23% both predictor and outcome)), with physical functioning and symptom domains selected most frequently as predictor. Few models (23%) predicted HRQoL domains by other or baseline HRQoL domains. HRQoL was used as outcome in 21% of the publications, with a focus on predicting symptoms. There were no difference between AI-based (16%) and classical methods (84%) in model type selection or model performance when using HRQoL data. This review highlights the role of HRQoL as a tool in predicting disease outcomes. Prediction of and with HRQoL is still in its infancy as most of the models are not fully developed. Current models focus mostly on the physical aspects of HRQoL to predict clinical outcomes, and few utilize AI-based methods.

Purpose: A number of studies have explored patients' subjective experience of waiting for spinal surgery, however, they did so through an investigation conducted post-operatively. Thus, the aim of this study was to explore the experience of patients while still on the waitlist for lumbar spinal arthrodesis.

Methods: This qualitative study of semi-structured interviews was conducted at an orthopedic research institute in Italy. The interview track was developed by a team of professionals (physiotherapists, orthopedic surgeon, psychologist) and consisted of 40 questions. Fifteen patients, 10 females and 5 males aged between 23 and 80 years, waiting for spinal arthrodesis were interviewed. The interviews were performed, transcribed and analyzed by the multiprofessional team through thematic analysis using a reflexive approach.

Results: Five main themes were generated: (1) Impact of persistent pain on patients' physical and psychological functioning; (2) Fear of the unknown and uncertainties; (3) Hope and regaining normality; (4) The impact of the unpredictability of the waiting time; (5) Need for better communication and information on the care pathway. Two minor themes were also produced.

Conclusions: These findings highlighted that patients on the waiting list for spinal arthrodesis need more certainty about waiting times, better communication with hospital staff, more thorough information about their care pathway. This could help patients feel more confident and may lead to more adequate expectations before surgery.

Trial registration: The study protocol was registered on ClinicalTrials.gov database on 14/03/2022 with ID number NCT06323694.

Purpose: To assess the health related quality of life (HRQoL) and sexual function related to urinary incontinence (UI) severity among women with overweight or obesity.

Methods: From September 2023 to January 2024, a cross-sectional was conducted among women seeking weight loss with overweight or obesity focusing on the symptoms and effects of UI. The degree of UI severity, UI-specific HRQoL, sexual function, and generic HRQoL were detected via Incontinence Modular Questionnaire-Urinary Incontinence Short Form (ICIQ-UI-SF), Incontinence Impact Questionnaire-Short Form (IIQ-7), Short-form Prolapse Incontinence Sexual Questionnaire (PISQ-12), and European Quality of Life-5 Dimensions 5-Level questionnaire (EQ-5D-5 L) respectively.

Results: Out of 1205 valid responses, 564 (46.8%) reported UI with 354 classified as mild, 179 as moderate, and 31 as severe based on ICIQ-UI-SF scores. The mean age and body mass index of the respondents were 36.65 years and 29.9 kg/m², respectively. Individuals with more severe symptoms of UI exhibited correspondingly lower levels of UI-specific HRQoL, sexual function, and generic HRQoL. Although the correlations were weak, the severity of UI symptoms measured by ICIQ-UI-SF and IIQ-7 were significantly correlated with the mean utility values (r=-0.335, and - 0.351, P<0.001) of EQ-5D-5 L especially in the domains of anxiety/depression symptoms (r = 0.339 and 0.322, P<0.001).

Conclusion: Nearly half of women seeking weight loss with overweight or obesity may experience UI, which significantly affects HRQoL and sexual function. The severity of UI symptoms is significantly correlated with the generic HRQoL measured by EQ-5D-5 L, especially in the domain of anxiety/depression symptoms.

Introduction: Urethral injuries are the most severe injuries caused by high-energy mechanisms such as traffic accidents, which have significant long-term serious consequences on the quality of life of the injured.

Objectives: Exploration of lived experiences of urethral injury in traffic accident victims is the main goal of this study.

Methods: This is a phenomenological qualitative study among men suffering from urethral injuries due to traffic accidents and referred to hospitals for urethroplasty in Iran. Sixteen in-depth interviews were conducted with 15-59-year-old injured men from August 2022 to May 2023 using a semi-structured questionnaire at Shohada Hospital, considering maximum variation and achieving saturation. For data analysis, Colizzi's analysis method was implemented in MaxQDA2020. Lincoln's and Guba's criteria were assessed to achieve the trustworthiness of the study.

Results: Five main themes emerged from the interviews: Urethral Injury resulting from traffic accidents as a Complex, Unknown Problem with a general lack of public awareness, Unpleasant Experience with Permanent Suffering from pain, shame, regret, isolation, Urethral Injury Causes Regret and Loss of Normalcy, Impact on Sexual and Social Identity, and its long-term consequences as neglected health and socio-economic issues are the unmet needs of the injured patients.

Conclusion: The majority of expressions related to low public awareness and poor infrastructure. There are needs neglected by public services, especially health care services. Alongside wresting with these issues, considering policies to support this vulnerable people, and their well-being, quality of life and prevent further damage in terms of physical, social and mental health is an axiom.

Background: To understand the impact of extrapulmonary tuberculosis (EPTB) and its treatment on quality of life, we analysed patient-reported outcome measures (PROMs) among presumptive ETPB patients.

Methods: EuroQol's five-dimensional three-level (EQ-5D-3L) questionnaire and the Visual Analogue Scale (EQ-VAS) were used to measure PROMs by 274 presumptive EPTB patients at pre- and post-treatment stages. The patients were categorised as TB and non-TB by using a composite reference standard. Following the EuroQol suggested analysis methods, we calculated the health utility summary measure at the pre- and post-treatment stages. The health state density curve and index were used to analyse inequality in reported health profiles. We investigated factors associated with EPTB patients' health utility through multivariable regression at the pre-treatment stage.

Results: The analysis of PROMs showed both physical (mobility, self-care, usual activities) and psychological (pain, discomfort, anxiety & depression) health affected by all EPTB manifestations (lymphadenitis, pleuritis, meningitis and others). Moreover, we found inequality in reported health profiles across disease manifestations at pre- and post-treatment stages. Post-treatment, we found improvement in PROMs and no reports of extreme-level health problems. However, some problems persisted across all dimensions of EPTB manifestations. We found 100% improvement in pleuritis and meningitis manifestations. Socioeconomic status, type of health facility attended, and patients' working capacity were associated with health utility.

Conclusion: Despite post-treatment improvement in health, inequality of reported health states by EPTB manifestations persisted, though decreased. This highlights that holistic patient- and health system-level interventions addressing the impact of illness should consider EPTB by its manifestations, not as a single disease entity.

ISOQOL's Australia and New Zealand Special Interest Group (ISOQOL ANZ SIG) connects local researchers and clinicians in a geographically remote region of the world. Members of our ANZ SIG have been conducting a review following COSMIN (COnsensus-based Standards for the selection of health Measurement INstruments) guidance, which outlines a comprehensive process to critically evaluate the properties of outcome measurement instruments, including patient-reported outcome measures (PROMs). Our experience has highlighted challenges for undertaking this type of review, notably a lack of consistency in how COSMIN guidance is applied and reported. In this Letter to the Editor, members of the ANZ SIG leadership discuss the PRISMA-COSMIN for Outcome Measurement Instruments; a new guideline developed to support and improve reporting of systematic reviews of outcome measurement instruments. We explore the potential of this guidance to improve how systematic reviews of PROMs are conducted and reported, from the perspective of a regional SIG.

Purpose: Physical functioning and symptom severity are important factors in the experience of people with living with non-small cell lung cancer (NSCLC). This study evaluates the reliability, validity, and meaningful within-person change (MWPC) thresholds of 2 patient-reported outcome (PRO) measures in NSCLC: the Patient-Reported Outcomes Measurement Information System (PROMIS®) Physical Function (PF) short form (SF) 8c and the Non-Small Cell Lung Cancer Symptom Assessment Questionnaire (NSCLC-SAQ).

Methods: Data came from 2 Phase 3 clinical trials among people living with NSCLC. PROMIS PF-SF analyses included data from 300 participants in the PAPILLON trial, and NSCLC-SAQ analyses included 615 participants in the MARIPOSA 2 trial. Prespecified expected relationships between target PRO measures and relevant study variables were used to evaluate validity evidence. Additionally, MWPC thresholds were estimated using anchor- and distribution-based analyses.

Results: Both PRO measures exhibited adequate internal consistency for clinical trial use. All examined correlations with reference variables and score differences between clinically meaningful groups conformed to expectations for both measures. Estimated thresholds for meaningful worsening were a decrease of 6-7 points on the PROMIS PF-SF and an increase of 2-3 points on NSCLC-SAQ.

Conclusions: This study is the first to examine longitudinal measurement properties of PROMIS PF-SF and investigates thresholds for meaningful change on the PROMIS PF-SF and NSCLC-SAQ measures. Results support the validity of these measures in NSCLC and aid the interpretation of clinically meaningful change in scores over time.