Congenital sucrase-isomaltase deficiency (CSID) is a rare genetic disorder characterized by a deficiency of the sucrase-isomaltase (SI) enzyme complex within the brush border membrane of the small intestine. Mutations in the SI gene result in abnormal synthesis and/or incorrect transport of the SI enzyme. Patients with CSID generally have reduced sucrase activity, but levels of...
To study the prevalence and incidence of the most common eye diseases and their relation to health-related quality of life (HRQoL), depression, psychological distress, and visual impairment in the aging population of Finland. Our study was based on two nationwide health surveys conducted in 2000 and 2011. Eye disease status data were obtained from 7379 and 5710 individuals aged...
In the original publication Table 1 has been removed as the authors did not obtain permission to reproduce the BODY-Q scale. A revised Table 1 is provided in this correction.
Self-report is the gold standard for measuring children’s health-related outcomes. Design of such measures is complex and challenging. This review aims to systematically appraise the evidence on recall period, response scale format, mode of administration and approaches needed to enable children and young people < 19 years to participate in valid and reliable self-reporting of...
Since the end of the industrial revolution, advances in public health and clinical medicine have contributed to dramatic decreases in infant and childhood mortality, improvements in health-related quality of life (HRQoL), increases in overall life expectancy (LE), and rectangularization of survival curves. In this article, we focus on disability that has occurred with the overall...
To examine psychometric properties of the Polish version of the 36-item WHO Disability Assessment Schedule 2.0 (WHODAS 2.0) in the population with hip and knee osteoarthritis (OA). This was a longitudinal study with repeated measures during retest examinations. Subjects from a Polish Specialist Hospital (age = 68.3 ± 9.2years, 71% female, 44.2% knee OA, 55.8% hip OA) were tested...
The aim of this study is to explore how potentially traumatic events (PTEs) from war and flight influence health-related quality of life (HRQoL) in young refugees after recent resettlement. In a model based on earlier theory, we tested if post-migration stressors and mental distress mediated the effect of PTEs on HRQoL, individually and in serial. We also explored how different...
The most widely used generic questionnaire to estimate the quality of life for yielding quality-adjusted life years in economic evaluations is EQ-5D. Country-specific population value sets are required to use EQ-5D in economic evaluations. The aim of this study was to establish an EQ-5D-3L value set for Russia. A representative sample aged 18+ years was recruited from the Russia...
Health fluctuations even within a single day are typical in multiple sclerosis (MS), but are not captured by widely used questionnaires like the EQ-5D-5L. This exploratory study aimed to develop an ambulatory assessment (AA) version of the EQ-5D-5L (EQ-5D-AA) where patients rate their health on mobile phones multiple times per day over several days, and to assess its feasibility...
Eight of the ten items of the Dermatology Life Quality Index (DLQI) have a ‘not relevant’ response (NRR) option. There are two possible ways to interpret NRRs: they may be considered ‘not at all’ or missing responses. We aim to compare the measurement performance of the DLQI in psoriasis patients when NRRs are scored as ‘0’ (hereafter zero-scoring) and ‘missing’ (hereafter...
The purpose of this study was to analyse the trajectories of depression in urban and rural areas, and to analyse the relationship among multimorbidity, disability and other variables and trajectories. Data from the China Health and Retirement Longitudinal Study were used. A latent class growth model was used to characterise the trajectories of urban and rural depression symptoms...
Uncertainties exist in how respondents interpret response options in patient-reported outcome measures (PROMs), particularly across different domains and for different scale labels. The current study assessed how respondents quantitatively interpret common response options. Members of the general public were recruited to this study via an online panel, stratified by age, gender...
The aim of this study was to examine the association between eHealth literacy and health-related quality of life (HRQoL) and explore whether health-promoting behaviors mediate the association between eHealth literacy and HRQoL among Chinese older adults. An anonymous cross-sectional survey was conducted among 2300 adults aged 60 or older from Jinan, China. The eHealth Literacy...
Type 2 diabetes mellitus (T2DM) is a considerable impact on physical health as well as on emotional and social wellbeing. This study aimed to investigate the quality of life and its associated factors among Palestinians with T2DM. A cross-sectional study including 517 patients (68% female) was conducted in eleven primary health care clinics located in Ramallah and al-Bireh...
Results of patient-reported outcome measures (PROMs) are increasingly used to inform healthcare decision-making. Research has shown that response shift can impact PROM results. As part of an international collaboration, our goal is to provide a framework regarding the implications of response shift at the level of patient care (micro), healthcare institute (meso), and healthcare...
Studies of patients with ulcerative colitis (UC) report that reduced clinical symptoms and endoscopic activity predict better health-related quality of life (HRQoL). However, no study has examined the joint and unique associations of clinical and endoscopic activity with HRQoL, nor of histologic inflammation and HRQoL. These post hoc analyses evaluated whether reduced clinical...
Pandemics can be associated with anxiety and depression in cancer patients who are undergoing treatment. In the present study, we aimed to perform a comparative evaluation of the conditions of cancer patients before and during the severe acute respiratory distress syndrome coronavirus 2 (SARS-CoV-2) pandemic using the Beck Depression Inventory (BDI) and Beck Anxiety Inventory...
Anxiety, depression, poor sleep quality and lower quality of life (QOL) are associated with worse outcomes in heart failure (HF) patients. Motivational interview (MI) has been effective in different patient populations to promote self-care. However, its effect on anxiety, depression, sleep quality and QOL in HF patients is unknown. The aim of this study was to evaluate the effect...
The impact of prophylactic implantable cardioverter-defibrillator (ICD) implantation on the psychological well-being of patients on dialysis is unknown. We aimed to identify the effect of primary ICD implantation on quality of life (QoL), mood and dispositional optimism in patients undergoing dialysis. We performed a prespecified subanalysis of the randomized controlled ICD2...
This study aimed to validate the PROMIS Pediatric item bank v2.0 Peer Relationships and compare reliability of the full item bank to its short form, computerized adaptive test (CAT) and the social functioning (SF) subscale of the Pediatric Quality of Life Inventory (PedsQL™). Children aged 8–18 (n = 1327), representative of the Dutch population completed the Peer Relationships...
The Adult Social Care Outcomes Toolkit for informal carers (ASCOT-Carer) can be used to assess long-term care-related quality of life (LTC-QoL) of adult informal carers of persons using LTC services. The ASCOT-Carer instrument has been translated into several languages, but preference weights reflecting the relative importance of different outcome states are only available for...
Social isolation has been associated with both physical and psychological adverse outcomes and is prevalent in older adults. We investigated the impact of social isolation on bone mineral density (BMD) and physical capability in community-dwelling older adults. Data were collected in 2011 and 2017 from the Hertfordshire Cohort Study. In 2011, we assessed social isolation using...
This work is part of an international, interdisciplinary initiative to synthesize research on response shift in results of patient-reported outcome measures. The objective is to critically examine current response shift methods. We additionally propose advancing new methods that address the limitations of extant methods. Based on literature reviews, this critical examination...
Complementary interventions for persons with severe mental illness (SMI) focus on both personal recovery and illness self-management. This paper aimed to identify the patient-reported outcome measures (PROMs) associated with the most relevant and meaningful change in persons with SMI who attended the Illness Management and Recovery Programme (IMR). The effect of the IMR was...
While the use of clinical feedback systems has become commonplace in psychological treatment, many of the most common instruments used for this purpose have not changed in decades. This paper describes the first four cycles of a measure development method designed to embrace continuous quality improvement. Using techniques and philosophies developed in business management and...