Background And Objectives: Subjective cognitive decline (SCD) is a common experience of self-perceived decline without objective cognitive impairment. It has been theorised that SCD is associated with participation in cognitive leisure activities (CLA), but the evidence base is multifarious and unclear. The purpose of this systematic review was to synthesize current evidence to determine the association between SCD and CLA engagement.
View Article and Find Full Text PDFPurpose: Evidence of comprehensibility is frequently required during the development of patient reported outcome measures (PROMs); the respondent's interpretation of PROM items needs to align with intended meanings. Cognitive interviews are recommended for investigating PROM comprehensibility, yet guidance for analysis is lacking. Consequently, the quality and trustworthiness of cognitive interview data and analysis is threatened, as there is no clear procedure detailing how analysts can systematically, and consistently, identify evidence that respondent interpretations align/misalign with intended meanings.
View Article and Find Full Text PDFBackground: Verbal communication difficulties are associated with a range of adolescent and adult outcomes in individuals with autism spectrum disorder (ASD). Yet there is limited information about contextual factors associated with verbal communication difficulties beyond early childhood, and how youth with ASD compare to youth with other developmental disabilities (DD).
Aims: The current study examined verbal communication difficulties among adolescents with ASD and other DD, and child and family characteristics associated with these difficulties in later in life.
Introduction: Anterior abdominal wall defects (AWDs), such as gastroschisis or omphalocele, are often diagnosed prenatally and counseled to deliver at facilities with resources capable of managing their AWD and complex-associated anomalies. The American College of Surgeons instituted their Children's Surgery Verification (CSV) program to identify facilities with the optimal resources for pediatric surgical care. We aimed to evaluate the impact of CSV status on the outcomes of AWD and potential health disparities in the care of AWD in the first year of life in Texas.
View Article and Find Full Text PDFObjectives: Hypoglycemia affects the health-related quality of life (HRQoL) of people living with diabetes (PwD), and existing preference-weighted measures do not capture all important aspects. The study aimed to generate a preference-weighted measure capturing the HRQoL impact of hypoglycemia in PwD.
Methods: Items for the health-state classification system were selected from the hypoglycemia-specific Hypo-RESOLVE QoL measure using relevance in cognitive interviews, translatability, suitability for valuation, endorsement by patient advisors and experts, and psychometric performance in a large survey of PwD.
Insights Imaging
October 2024
The Strengthening the Screening of Lung Cancer in Europe (SOLACE) initiative, supported by Europe's Beating Cancer Plan, is dedicated to advancing lung cancer screening. This initiative brings together the most extensive pan-European network of respiratory and radiology experts, involving 37 partners from 15 countries. SOLACE aims to enhance equitable access to lung cancer screening by developing targeted recruitment strategies for underrepresented and high-risk populations.
View Article and Find Full Text PDFBackground: Multiple Sclerosis (MS) is a chronic neurodegenerative disease of the central nervous system with a significant impact on mobility and balance function. Telerehabilitation is an emerging branch of telemedicine which has the potential to deliver rehabilitation remotely through the use of information and communication technology. The aim of this systematic literature review and meta-analysis is to synthesise and analyse the evidence on the effectiveness of telerehabilitation in improving mobility and balance function in MS and to determine its feasibility.
View Article and Find Full Text PDFPurpose: To describe retention of an autism spectrum disorder (ASD) diagnosis from preschool to adolescence and the most common co-occurring diagnoses among children with ASD in preschool and adolescence. A second objective was to identify co-occurring diagnoses more likely to emerge between preschool and adolescence among children with ASD vs. another developmental or mental health diagnosis in preschool.
View Article and Find Full Text PDFIntroduction: The American College of Surgeons Children's Surgery Verification (CSV) status recognizes hospitals that deliver high-quality pediatric surgical care. Texas has 5 CSV centers in three cities, which may limit equitable access to care. We explored the characteristics and outcomes of infants admitted in Texas as a function of facility CSV status.
View Article and Find Full Text PDFBackground: Patient reported outcome measures (PROMs) can be used to assess the impact of health conditions upon an individual's health-related quality of life (HRQoL). Whilst PROMs have been used to quantify the HRQoL impact of amyotrophic lateral sclerosis (ALS), existing instruments may not fully capture what matters to people living with ALS (plwALS) or be appropriate to be used directly to inform the cost-effectiveness of new treatments. This highlights a need for a new condition-specific PROM that can both capture what's important to plwALS and be used in economic evaluation.
View Article and Find Full Text PDFSelf-disgust, a negative self-conscious emotional schema that is associated with mental health difficulties in both clinical and non-clinical populations, is typically assessed with self-reported measures that target physical and behavioural aspects of the self. The aim of the present research was to develop and validate a novel implicit self-disgust measure (ISDM) using an Implicit Association Task (IAT) paradigm, across three studies. Study 1 developed a list of disgust-related and positive words that were rated for emotional valence and arousal and informed the content of the ISDM.
View Article and Find Full Text PDFBackground: Immunocompromised individuals are known to respond inadequately to SARS-CoV-2 vaccines, placing them at high risk of severe or fatal COVID-19. Thus, immunocompromised individuals and their caregivers may still practice varying degrees of social or physical distancing to avoid COVID-19. However, the association between physical distancing to avoid COVID-19 and quality of life has not been comprehensively evaluated in any study.
View Article and Find Full Text PDFIntroduction: Congenital diaphragmatic hernia (CDH) is readily prenatally diagnosed and associated with significant perinatal morbidity and mortality. Delivery at facilities with adequate resources for neonatal resuscitation, such as Children's Surgery Verification (CSV) centers, is recommended; however, disparities have been clinically noted. We aimed to characterize locoregional care of CDH and the impact of race and ethnicity.
View Article and Find Full Text PDFBackground: Lysosomal storage diseases (LSDs) are a group of rare inherited metabolic disorders, consisting of over 70 diseases that are characterised by lysosomal dysfunction. Due to their varied and progressive symptoms, LSDs have a continual impact on patients' health-related quality of life (HRQoL). Several recently published studies have provided insight into the HRQoL of individuals with LSDs.
View Article and Find Full Text PDFBackground And Objectives: The assessment of health-related quality of life (HRQoL) in patients with amyotrophic lateral sclerosis (ALS) is heterogeneous and inconsistent. The objectives of this study were (1) to develop a comprehensive conceptual framework of HRQoL in ALS and (2) map the content of existing patient-reported outcome measures (PROMs) used in ALS to this novel framework.
Methods: Our model of HRQoL in ALS (Health-related Quality of life in Amyotrophic Lateral Sclerosis, QuALS) was developed from a systematic literature review and consultative input from key stakeholders (patients, carers, and health care professionals).
The FRESHAIR4Life study aims to reduce the non-communicable disease (NCD) burden by implementing preventive interventions targeting adolescents' exposure to tobacco use and air pollution (AP) worldwide. This paper presents the FRESHAIR4Life methodology and initial rapid review results. The rapid review, using various databases and PubMed, aimed to guide decision-making on risk factor focus, target areas, and populations.
View Article and Find Full Text PDFIntroduction: Spina bifida (SB) occurs in 3.5/10,000 live births and is associated with significant long-term neurologic and urologic morbidity. We explored the characteristics and outcomes of pediatric patients with SB and the facilities that treat them in Texas.
View Article and Find Full Text PDFAims/hypothesis: Valid and reliable patient-reported outcome measures are vital for assessing disease impact, responsiveness to healthcare and the cost-effectiveness of interventions. A recent review has questioned the ability of existing measures to assess hypoglycaemia-related impacts on health-related quality of life for people with diabetes. This mixed-methods project was designed to produce a novel health-related quality of life patient-reported outcome measure in hypoglycaemia: the Hypo-RESOLVE QoL.
View Article and Find Full Text PDFThe problem of supporting visually impaired and blind people in meaningful interactions with objects is often neglected. To address this issue, we adapted a tactile belt for enhanced spatial navigation into a bracelet worn on the wrist that allows visually impaired people to grasp target objects. Participants' performance in locating and grasping target items when guided using the bracelet, which provides direction commands via vibrotactile signals, was compared to their performance when receiving auditory instructions.
View Article and Find Full Text PDFBackground: Autistic adults and those with other developmental disabilities (DD) have increased depressive symptoms and decreased activity engagement when compared to those with no DD. Few studies explore activities related to depressive symptoms in autistic people and those with other DD during adolescence.
Objective: The objectives of this analysis were to describe depressive symptoms and activity engagement among autistic adolescents and those with other DD and no DD and explore types of activities associated with depressive symptoms, stratified by study group.
Objective: Many children with autism spectrum disorder (ASD) and other developmental disabilities (DD) transitioned to telehealth services due to the COVID-19 pandemic. Our objectives were to describe reductions in allied and behavioral healthcare services and receipt of caregiver training to deliver services at home because of COVID-19 for children with ASD and other DD, and factors associated with worse response to remote delivery of services for children with ASD.
Method: Prior to the pandemic, children 2 to 5 years of age were enrolled in a multi-site case-control study and completed a developmental assessment.
Lung development starts in utero and continues during childhood through to adolescence, reaching its peak in early adulthood. This growth is followed by gradual decline due to physiological lung ageing. Lung-function development can be altered by several host and environmental factors during the life course.
View Article and Find Full Text PDFIntroduction: Congenital diaphragmatic hernia (CDH) is a life-threatening, prenatally diagnosed congenital anomaly. We aim to characterize care and outcomes of infants with CDH in Texas and the impact of treating facilities volume of care.
Methods: Retrospective cohort study using a state-wide Hospital Inpatient Discharge Public Use Data File was conducted (2013-2021).