Health and Quality of Life Outcomes

BACKGROUND: A condition-specific instrument is necessary to measure the health-related quality of life among those with polycystic ovary syndrome (PCOS), the most common chronic endocrinopathy among women. The first instrument was developed in 1988, followed by several revisions. However, further recommendations from all versions include additional application and measurement among different cultural populations of women with PCOS and psychometric testing based on use among larger samples of women with PCOS...

Understanding consequences of poor chelation compliance is crucial given the enormous burden of post-transfusional iron overload complications. We systematically reviewed iron-chelation therapy (ICT) compliance, and the relationship between compliance with health outcome and health-related quality of life (HRQoL) in thalassaemia patients. Several reviewers performed systematic search strategy of literature through PubMed, Scopus, and EBSCOhost. The preferred reporting items of systematic reviews and meta-analyses (PRISMA) guidelines were followed...

BACKGROUND: Trajectories of health-related quality of life (HRQoL) after driving cessation (DC) are thought to decline steeply, but for some, HRQoL may improve after DC. Our objective is to examine trajectories of HRQoL for individuals before and after DC. We hypothesize that for urban drivers, volunteers and those who access alternative transportation participants' health may remain unchanged or improve. METHODS: This study uses data from the AAA Longitudinal Research on Aging Drivers (LongROAD) study, a prospective cohort of 2,990 older drivers (ages 65-79 at enrollment)...

BACKGROUND: The aim of this study was to estimate the impact of mild-to-moderate COVID-19 on health-related quality of life (HRQoL) over time among individuals in the United Kingdom, adding to the evidence base that had focussed on severe COVID-19. METHODS: A bespoke online survey was administered to individuals who self-reported a positive COVID-19 test. An amended version of a validated generic HRQoL instrument (EQ-5D-5L) was used to measure HRQoL retrospectively at different timepoints over the course of an infection: pre-COVID-19, acute COVID-19, and long COVID...

BACKGROUND: Patient-Reported Outcomes Measurement Information System (PROMIS®) Dyspnea Activity Motivation & Requirement item pool and sleep related impairments (SRI) item bank are designed in assessing the impact of dyspnea and sleep and guiding patient management. However, to effectively utilize this tool in Arabic-speaking populations, it is essential to perform a thorough translation and cultural adaptation process. Therefore, the aim of the study is to translate and cross-culturally adapt the translated items of the PROMIS® dyspnea activity motivation and requirement and SRI into Arabic...

BACKGROUND: Evaluation of psychosocial consequences of lung cancer screening with LDCT in high-risk populations has generally been performed using generic psychometric instruments. Such generic instruments have low coverage and low power to detect screening impacts. This study aims to validate an established lung cancer screening-specific questionnaire, Consequences Of Screening Lung Cancer (COS-LC), in Australian-English and describe early results from the baseline LDCT round of the International Lung Screen Trial (ILST)...

BACKGROUND: Nutrition care can positively affect multiple aspects of patient's health; outcomes are commonly evaluated on the basis of their impact on a patient's (i) illness-specific conditions and (ii) health-related quality of life (HRQoL). Our systematic review examined how HRQoL was measured in studies of nutritional interventions. To help future researchers select appropriate Quality of Life Questionnaires (QoLQ), we identified commonly-used instruments and their uses across populations in different regions, of different ages, and with different diseases...

Patient-reported outcomes (PROs) are frequently used in a variety of settings, including clinical trials and clinical practice. The definition of PRO and quality of life (QOL) and their relationship have been concluded through discussions among experts that has been the premise of PRO guidelines are not clearly stated in the guidelines. Therefore, the definition of PRO, especially in relation to QOL, is sometimes explained simply, as "PRO includes QOL," but this complicated matters. This study investigated the perceptions of PRO among various stakeholders (including patients and their families, the industry, clinicians, regulatory or health technology assessment personnel, and academic researchers) in Japan to clarify its definitions and that of QOL, including their relationship...

BACKGROUND: The Short Warwick and Edinburgh Mental Wellbeing Scale (SWEMWBS) is a widely used non-preference-based measure of mental health in the UK. The primary aim of this paper is to construct an algorithm to translate the SWEMWBS scores to utilities using the Recovering Quality of Life Utility Index (ReQoL-UI) measure. METHODS: Service users experiencing mental health difficulties were recruited in two separate cross-sectional studies in the UK. The following direct mapping functions were used: Ordinary Least Square, Tobit, Generalised Linear Models...

BACKGROUND: Older adults present a variety of oral diseases and conditions, in addition to co-morbidities and limited access to dental care, which significantly impact their oral health-related quality of life (OHRQoL). There are many instruments published to measure OHRQoL. However, it is challenging for clinicians and researchers to choose the best instrument for a given purpose. PURPOSE: To identify OHRQoL instruments available for older adults and summarize the evidence on the conceptual and measurement model, psychometric properties, interpretability, and administration issues of OHRQoL instruments available for older adults through a systematic review...

Following the Russian-Ukrainian conflict, the well-being of millions of Ukrainians has been jeopardised. This study aims to translate and test the psychometric features of the Ukrainian version of the General Health Questionnaire 12 (GHQ-12). The study included Ukrainian refugees housed in Verona (Italy) between November/2022 and February/2023. The Ukrainian translation was obtained through a 'forward-backward' translation. Questionnaire was completed by 141 refugees (females: 78.7%). Median age was 36 years (IQR 23-43)...

BACKGROUND: Quality-of-life is an essential outcome for quality assessment and economic evaluation in health and social care. The-Quality-of-Life - Aged Care Consumers (QOL-ACC) is a new preference-based quality-of-life measure, psychometrically validated with older people in aged care. More evidence is needed to inform the self-report reliability of the QOL-ACC in older people with varying levels of cognitive impairment and dementia. METHODS: A think-aloud protocol was developed and applied with older residents...

BACKGROUND: Eye cancer is a serious eye disease that threatens patients' lives. In the past decade, there have been more and more studies on eye cancer. From the recently published eye cancer literature review, it can be seen that the two most popular research hotspots are retinoblastoma (RB) and uveal melanoma (UM) [1, 2]. Although several studies have assessed QOL in different types of eye cancer patients, a study that synthesizes the factors influencing QOL in eye cancer patients is yet to be undertaken...

OBJECTIVE: The EQ-VAS is an important component of the EQ-5D questionnaire. However, there is limited evidence comparing its performance to the EQ-5D utility score, which restricts its use in the population. This study aimed to EQ-5D-5L utility score and EQ-visual analogue scale (EQ-VAS) in primary care patients in Hong Kong (HK). METHODS: Secondary data analysis was performed on the data collected from a cross-sectional survey to investigate patient engagement in HK...

BACKGROUND: Peripheral intravenous catheters (PIVCs) are essential for successful administration of intravenous treatments. However, insertion failure and PIVC complications are common and negatively impact patients' health-outcomes and experiences. We aimed to assess whether generic (not condition-specific) quality of life and experience measures were suitable for assessing outcomes and experiences of patients with PIVCs. METHODS: We undertook a secondary analysis of data collected on three existing instruments within a large randomised controlled trial, conducted at two adult tertiary hospitals in Queensland, Australia...

BACKGROUND: The Paediatric Eosinophilic Oesophagitis Module (PedsQL-EoE) was developed in English as a valid and reliable questionnaire to assess health-related quality of life (HRQoL) in children with EoE. The aim of this study was to evaluate the validity and reliability of the PedsQL-EoE that was previously adapted to Spanish by our group. METHODS: This cross-sectional multicentre study was conducted in 36 paediatric gastroenterology units. Groups with and without dietary restrictions were studied separately...

BACKGROUND: Genomic testing transforms the diagnosis and management of rare conditions. However, uncertainty exists on how to best measure genomic outcomes for informing healthcare priorities. Using the HTA-preferred method should be the starting point to improve the evidence-base. This study explores the responsiveness of SF-6D, EQ-5D-5L and AQoL-8D following genomic testing across childhood and adult-onset genetic conditions. METHOD: Self-reported patient-reported outcomes (PRO) were obtained from: primary caregivers of children with suspected neurodevelopmental disorders (NDs) or genetic kidney diseases (GKDs) (carers' own PRO), adults with suspected GKDs using SF-12v2; adults with suspected complex neurological disorders (CNDs) using EQ-5D-5L; and adults with dilated cardiomyopathy (DCM) using AQol-8D...

BACKGROUND: The Malocclusion Impact Scale for Early Childhood (MIS-EC) is a newly developed questionnaire used to measure the parental perceptions of the impact of malocclusion on oral health-related quality of life (OHRQoL) of preschool children aged 3-5 years. This study describes the cross-cultural adaptation and validation of the MIS-EC questionnaire into Chinese version (MIS-EC/C). METHODS: The MIS-EC/C was developed in accordance with international standards...

BACKGROUND: Psychosocial factors and dentist-patient relationships (DPR) have been suggested to be associated with oral health outcomes. This study aimed to test a conceptual model which hypothesised relationships among psychosocial factors, DPR variables, and oral health-related quality of life (OHRQoL) in the 'distal-to-proximal' framework. METHODS: A total of 12,245 adults aged 18 years or over living in South Australia were randomly sampled for the study...

PURPOSE: Anxiety is a common emotion experienced by patients with prostate cancer (PCa), and can be exacerbated by testing the prostate-specific antigen (PSA) index. The Memorial Anxiety Scale for Prostate Cancer (MAX-PC) was developed to assess the cancer-specific anxiety of these patients, but lack of appropriate thresholds for this scale limits its use. This study aimed to utilize ROC curve analysis to identify the best cut-off values for the Chinese version of the MAX-PC scale. METHODS: A cross-sectional survey was conducted using the Chinese version of the MAX-PC scale and the Generalized Anxiety Disorder Scale (GAD)...