The effect of mode and context on survey results: analysis of data from the Health Survey for England 2006 and the Boost Survey for London.

BACKGROUND: Health-related data at local level could be provided by supplementing national health surveys with local boosts. Self-completion surveys are less costly than interviews, enabling larger samples to be achieved for a given cost. However, even when the same questions are asked with the same wording, responses to survey questions may vary by mode of data collection. These measurement differences need to be investigated further. METHODS: The Health Survey for England in London ('Core') and a London Boost survey ('Boost') used identical sampling strategies but different modes of data collection. Some data were collected by face-to-face interview in the Core and by self-completion in the Boost; other data were collected by self-completion questionnaire in both, but the context differed. Results were compared by mode of data collection using two approaches. The first examined differences in results that remained after adjusting the samples for differences in response. The second compared results after using propensity score matching to reduce any differences in sample composition. RESULTS: There were no significant differences between the two samples for prevalence of some variables including long-term illness, limiting long-term illness, current rates of smoking, whether participants drank alcohol, and how often they usually drank. However, there were a number of differences, some quite large, between some key measures including: general health, GHQ12 score, portions of fruit and vegetables consumed, levels of physical activity, and, to a lesser extent, smoking consumption, the number of alcohol units reported consumed on the heaviest day of drinking in the last week and perceived social support (among women only). CONCLUSION: Survey mode and context can both affect the responses given. The effect is largest for complex question modules but was also seen for identical self-completion questions. Some data collected by interview and self-completion can be safely combined

The effect of survey method on survey participation: Analysis of data from the Health Survey for England 2006 and the Boost Survey for London

BACKGROUND: There is a need for local level health data for local government and health bodies, for health surveillance and planning and monitoring of policies and interventions. The Health Survey for England (HSE) is a nationally-representative survey of the English population living in private households, but sub-national analyses can be performed only at a regional level because of sample size. A boost of the HSE was commissioned to address the need for local level data in London but a different mode of data collection was used to maximise participant numbers for a given cost. This study examines the effects on survey and item response of the different survey modes. METHODS: Household and individual level data are collected in HSE primarily through interviews plus individual measures through a nurse visit. For the London Boost, brief household level data were collected through interviews and individual level data through a longer self-completion questionnaire left by the interviewer and collected later. Sampling and recruitment methods were identical, and both surveys were conducted by the same organisation. There was no nurse visit in the London Boost. Data were analysed to assess the effects of differential response rates, item non-response, and characteristics of respondents. RESULTS: Household response rates were higher in the 'Boost' (61%) than 'Core' (HSE participants in London) sample (58%), but the individual response rate was considerably higher in the Core (85%) than Boost (65%). There were few differences in participant characteristics between the Core and Boost samples, with the exception of ethnicity and educational qualifications. Item non-response was similar for both samples, except for educational level. Differences in ethnicity were corrected with non-response weights, but differences in educational qualifications persisted after non-response weights were applied. When item non-response was added to those reporting no qualification, participants' educational levels were similar in the two samples. CONCLUSION: Although household response rates were similar, individual response rates were lower using the London Boost method. This may be due to features of London that are particularly associated with lower response rates for the self-completion element of the Boost method, such as the multi-lingual population. Nevertheless, statistical adjustments can overcome most of the demographic differences for analysis. Care must be taken when designing self-completion questionnaires to minimise item non-response

Global Retinoblastoma Presentation and Analysis by National Income Level.

Importance: Early diagnosis of retinoblastoma, the most common intraocular cancer, can save both a child's life and vision. However, anecdotal evidence suggests that many children across the world are diagnosed late. To our knowledge, the clinical presentation of retinoblastoma has never been assessed on a global scale. Objectives: To report the retinoblastoma stage at diagnosis in patients across the world during a single year, to investigate associations between clinical variables and national income level, and to investigate risk factors for advanced disease at diagnosis. Design, Setting, and Participants: A total of 278 retinoblastoma treatment centers were recruited from June 2017 through December 2018 to participate in a cross-sectional analysis of treatment-naive patients with retinoblastoma who were diagnosed in 2017. Main Outcomes and Measures: Age at presentation, proportion of familial history of retinoblastoma, and tumor stage and metastasis. Results: The cohort included 4351 new patients from 153 countries; the median age at diagnosis was 30.5 (interquartile range, 18.3-45.9) months, and 1976 patients (45.4%) were female. Most patients (n = 3685 [84.7%]) were from low- and middle-income countries (LMICs). Globally, the most common indication for referral was leukocoria (n = 2638 [62.8%]), followed by strabismus (n = 429 [10.2%]) and proptosis (n = 309 [7.4%]). Patients from high-income countries (HICs) were diagnosed at a median age of 14.1 months, with 656 of 666 (98.5%) patients having intraocular retinoblastoma and 2 (0.3%) having metastasis. Patients from low-income countries were diagnosed at a median age of 30.5 months, with 256 of 521 (49.1%) having extraocular retinoblastoma and 94 of 498 (18.9%) having metastasis. Lower national income level was associated with older presentation age, higher proportion of locally advanced disease and distant metastasis, and smaller proportion of familial history of retinoblastoma. Advanced disease at diagnosis was more common in LMICs even after adjusting for age (odds ratio for low-income countries vs upper-middle-income countries and HICs, 17.92 [95% CI, 12.94-24.80], and for lower-middle-income countries vs upper-middle-income countries and HICs, 5.74 [95% CI, 4.30-7.68]). Conclusions and Relevance: This study is estimated to have included more than half of all new retinoblastoma cases worldwide in 2017. Children from LMICs, where the main global retinoblastoma burden lies, presented at an older age with more advanced disease and demonstrated a smaller proportion of familial history of retinoblastoma, likely because many do not reach a childbearing age. Given that retinoblastoma is curable, these data are concerning and mandate intervention at national and international levels. Further studies are needed to investigate factors, other than age at presentation, that may be associated with advanced disease in LMICs

The genetic architecture of the human cerebral cortex

The cerebral cortex underlies our complex cognitive capabilities, yet little is known about the specific genetic loci that influence human cortical structure. To identify genetic variants that affect cortical structure, we conducted a genome-wide association meta-analysis of brain magnetic resonance imaging data from 51,665 individuals. We analyzed the surface area and average thickness of the whole cortex and 34 regions with known functional specializations. We identified 199 significant loci and found significant enrichment for loci influencing total surface area within regulatory elements that are active during prenatal cortical development, supporting the radial unit hypothesis. Loci that affect regional surface area cluster near genes in Wnt signaling pathways, which influence progenitor expansion and areal identity. Variation in cortical structure is genetically correlated with cognitive function, Parkinson's disease, insomnia, depression, neuroticism, and attention deficit hyperactivity disorder

The global retinoblastoma outcome study : a prospective, cluster-based analysis of 4064 patients from 149 countries

DATA SHARING : The study data will become available online once all analyses are complete.BACKGROUND : Retinoblastoma is the most common intraocular cancer worldwide. There is some evidence to suggest that major differences exist in treatment outcomes for children with retinoblastoma from different regions, but these differences have not been assessed on a global scale. We aimed to report 3-year outcomes for children with retinoblastoma globally and to investigate factors associated with survival. METHODS : We did a prospective cluster-based analysis of treatment-naive patients with retinoblastoma who were diagnosed between Jan 1, 2017, and Dec 31, 2017, then treated and followed up for 3 years. Patients were recruited from 260 specialised treatment centres worldwide. Data were obtained from participating centres on primary and additional treatments, duration of follow-up, metastasis, eye globe salvage, and survival outcome. We analysed time to death and time to enucleation with Cox regression models. FINDINGS : The cohort included 4064 children from 149 countries. The median age at diagnosis was 23·2 months (IQR 11·0–36·5). Extraocular tumour spread (cT4 of the cTNMH classification) at diagnosis was reported in five (0·8%) of 636 children from high-income countries, 55 (5·4%) of 1027 children from upper-middle-income countries, 342 (19·7%) of 1738 children from lower-middle-income countries, and 196 (42·9%) of 457 children from low-income countries. Enucleation surgery was available for all children and intravenous chemotherapy was available for 4014 (98·8%) of 4064 children. The 3-year survival rate was 99·5% (95% CI 98·8–100·0) for children from high-income countries, 91·2% (89·5–93·0) for children from upper-middle-income countries, 80·3% (78·3–82·3) for children from lower-middle-income countries, and 57·3% (52·1-63·0) for children from low-income countries. On analysis, independent factors for worse survival were residence in low-income countries compared to high-income countries (hazard ratio 16·67; 95% CI 4·76–50·00), cT4 advanced tumour compared to cT1 (8·98; 4·44–18·18), and older age at diagnosis in children up to 3 years (1·38 per year; 1·23–1·56). For children aged 3–7 years, the mortality risk decreased slightly (p=0·0104 for the change in slope). INTERPRETATION : This study, estimated to include approximately half of all new retinoblastoma cases worldwide in 2017, shows profound inequity in survival of children depending on the national income level of their country of residence. In high-income countries, death from retinoblastoma is rare, whereas in low-income countries estimated 3-year survival is just over 50%. Although essential treatments are available in nearly all countries, early diagnosis and treatment in low-income countries are key to improving survival outcomes.The Queen Elizabeth Diamond Jubilee Trust and the Wellcome Trust.https://www.thelancet.com/journals/langlo/homeam2023Paediatrics and Child Healt