Are retention strategies used in National Institute for Health and Care Research, Health Technology Assessment trials supported by evidence for their effectiveness? A systematic mapping review

Background and Aims Poor retention of trial participants is common and can result in significant methodological, statistical, ethical, and financial challenges. To improve trial efficiency, we aimed to assess the extent to which commonly used strategies to retain participants within trials are supported by evidence for their effectiveness. Method A systematic methodological review was carried out to identify commonly used retention strategies in National Institute for Health and Care Research (NIHR) Health Technology Assessment (HTA) trials (January 2020–June 2022). Strategies were then mapped to evidence for their effectiveness from the most recent Cochrane retention review (published 2021), and a future Study Within A Trial (SWAT) priority list was created. Results Amongst 80 trials, the most frequently reported retention strategies were: flexibility with data collection method/location (53%); participant diaries (38%); use of routine data (29%); PPI input (26%); telephone reminders for participants (26%); postal reminders for participants (25%); monitoring approaches (21%); offering flexibility with timing of data collection (20%); pre-paid return postage (18%); prioritising collection of key outcomes (15%); and participant newsletters (15%). Out of the 56 identified strategies, mostly no, very low or low evidence for their effectiveness was identified (64%; 14%; 13% respectively). Discussion and Conclusions Commonly used retention strategies are lacking good quality evidence for their effectiveness. The findings support the need for more SWATs and help identify priority areas for future SWAT research. These priorities could be used with other priority lists to inform future SWAT conduct

Scientific understanding of East African climate change from the HyCRISTAL project

Integrating Hydro-Climate Science into Policy Decisions for Climate-Resilient Infrastructure and Livelihoods in East Africa (HyCRISTAL) is a Future Climate for Africa (FCFA) project funded to deliver new understanding of East African climate change and its impacts, and to demonstrate use of climate change information in long-term decision-making in the region. Here, we briefly summarise key findings from HyCRISTAL so far on climate change, as well as key findings from the pan-African FCFA project “IMPALA” relevant to East Africa, both in the context of previous literature on the topic

Scientific understanding of East African climate change from the HyCRISTAL project

Integrating Hydro-Climate Science into Policy Decisions for Climate-Resilient Infrastructure and Livelihoods in East Africa (HyCRISTAL) is a Future Climate for Africa (FCFA) project funded to deliver new understanding of East African climate change and its impacts, and to demonstrate use of climate change information in long-term decision-making in the region. Here, we briefly summarise key findings from HyCRISTAL so far on climate change, as well as key findings from the pan-African FCFA project “IMPALA” relevant to East Africa, both in the context of previous literature on the topic

Are retention strategies used in NIHR HTA trials supported by evidence? A protocol for a systematic mapping review.

This review seeks to formally examine what justification exists for choice of retention strategies used within publicly funded NIHR HTA trials. This review will also report the retention strategies that have been used by trials, and will determine the extent that these strategies are supported by robust evidence of their effectiveness

Co-design of patient information leaflets for germline predisposition to cancer: recommendations for clinical practice from the UK Cancer Genetics Group (UKCGG), Cancer Research UK (CRUK) funded CanGene-CanVar Programme and the Association of Genetic Nurse Counsellors (AGNC).

Peer reviewed: TrueBACKGROUND: Testing for germline pathogenic variants (GPVs) in cancer predisposition genes is increasingly offered as part of routine care for patients with cancer. This is often urgent in oncology clinics due to potential implications on treatment and surgical decisions. This also allows identification of family members who should be offered predictive genetic testing. In the UK, it is common practice for healthcare professionals to provide a patient information leaflet (PIL) at point of care for diagnostic genetic testing in patients with cancer, after results disclosure when a GPV is identified, and for predictive testing of at-risk relatives. Services usually create their own PIL, resulting in duplication of effort and wide variability regarding format, content, signposting and patient input in co-design and evaluation. METHODS: Representatives from UK Cancer Genetics Group (UKCGG), Cancer Research UK (CRUK) funded CanGene-CanVar programme and Association of Genetic Nurse Counsellors (AGNC) held a 2-day meeting with the aim of making recommendations for clinical practice regarding co-design of PIL for germline cancer susceptibility genetic testing. Lynch syndrome and haematological malignancies were chosen as exemplar conditions. RESULTS: Meeting participants included patient representatives including as co-chair, multidisciplinary clinicians and other experts from across the UK. High-level consensus for UK recommendations for clinical practice was reached on several aspects of PIL using digital polling, including that PIL should be offered, accessible, co-designed and evaluated with patients. CONCLUSIONS: Recommendations from the meeting are likely to be applicable for PIL co-design for a wide range of germline genetic testing scenarios

Utility of polygenic risk scores in UK cancer screening:a modelling analysis

This work was funded by a Wellcome Trust Clinical Research Fellowship. CH is supported by a Wellcome Trust Clinical Research Training Fellowship (203924/Z/16/Z). RSH acknowledges grant support from Cancer Research UK (C1298/A8362) and the Wellcome Trust (214388). AS is in receipt of a National Institute for Health Research (NIHR) Academic Clinical Lectureship, funding from the Royal Marsden Biomedical Research Centre, and is recipient of the Whitney-Wood Scholarship from the Royal College of Physicians. CT, CFR, HH, KS, RW, and BT acknowledge grant support from Cancer Research UK (C8620/A8372). MEJ receives funding from Breast Cancer Now.It is proposed that, through restriction to individuals delineated as high risk, polygenic risk scores (PRSs) might enable more efficient targeting of existing cancer screening programmes and enable extension into new age ranges and disease types. To address this proposition, we present an overview of the performance of PRS tools (ie, models and sets of single nucleotide polymorphisms) alongside harms and benefits of PRS-stratified cancer screening for eight example cancers (breast, prostate, colorectal, pancreas, ovary, kidney, lung, and testicular cancer). For this modelling analysis, we used age-stratified cancer incidences for the UK population from the National Cancer Registration Dataset (2016-18) and published estimates of the area under the receiver operating characteristic curve for current, future, and optimised PRS for each of the eight cancer types. For each of five PRS-defined high-risk quantiles (ie, the top 50%, 20%, 10%, 5%, and 1%) and according to each of the three PRS tools (ie, current, future, and optimised) for the eight cancers, we calculated the relative proportion of cancers arising, the odds ratios of a cancer arising compared with the UK population average, and the lifetime cancer risk. We examined maximal attainable rates of cancer detection by age stratum from combining PRS-based stratification with cancer screening tools and modelled the maximal impact on cancer-specific survival of hypothetical new UK programmes of PRS-stratified screening. The PRS-defined high-risk quintile (20%) of the population was estimated to capture 37% of breast cancer cases, 46% of prostate cancer cases, 34% of colorectal cancer cases, 29% of pancreatic cancer cases, 26% of ovarian cancer cases, 22% of renal cancer cases, 26% of lung cancer cases, and 47% of testicular cancer cases. Extending UK screening programmes to a PRS-defined high-risk quintile including people aged 40-49 years for breast cancer, 50-59 years for colorectal cancer, and 60-69 years for prostate cancer has the potential to avert, respectively, a maximum of 102, 188, and 158 deaths annually. Unstratified screening of the full population aged 48-49 years for breast cancer, 58-59 years for colorectal cancer, and 68-69 years for prostate cancer would use equivalent resources and avert, respectively, an estimated maximum of 80, 155, and 95 deaths annually. These maximal modelled numbers will be substantially attenuated by incomplete population uptake of PRS profiling and cancer screening, interval cancers, non-European ancestry, and other factors. Under favourable assumptions, our modelling suggests modest potential efficiency gain in cancer case detection and deaths averted for hypothetical new PRS-stratified screening programmes for breast, prostate, and colorectal cancer. Restriction of screening to high-risk quantiles means many or most incident cancers will arise in those assigned as being low-risk. To quantify real-world clinical impact, costs, and harms, UK-specific cluster-randomised trials are required.Publisher PDFPeer reviewe

Africa's climate helping decision-makers make sense of climate information: Burning questions - East African climate variability and change

Climate change is expected to impact east Africa in the coming decades, with an overall warming trend, but much is still uncertain. Climate researchers working in this field aim to quantify, understand and reduce this uncertainty. On a five to 40 year timescale, climate projections are uncertain because the models used to predict the expected response from greenhouse gas emissions cannot capture all the relevant processes sufficiently well. In addition, many of the standard climate models do not fully consider all regional factors causing local climate change. There are therefore several ‘burning questions’ that scientists hope to address

WP1: Identifying and prioritising trial recruitment and retention strategies

The Trial Forge SWAT Network and the NIHR-funded Implement SWATs programme established a working group in 2022 to identify and prioritise recruitment and retention strategies for future evaluation using randomised SWAT designs. We searched the NIHR HTA Journals Library to identify published randomised trials. The recruitment and retention strategies used for each trial were extracted by two independent reviewers and categorised, using the Online Resource for Research in Clinical triAls (ORRCA) recruitment and retention domains. Strategies were then ranked according to their frequency of use. We mapped the identified strategies to the Cochrane systematic reviews of recruitment strategies and retention strategies; a systematic review of economic evaluations alongside SWATs; the Prioritising Recruitment in Randomised Trials (PRioRiTy I) and Prioritising Retention in Randomised Trials (PRioRiTy II); the MRC-funded Systematic Techniques for Assisting Recruitment to Trials (MRC START); and PROMoting the use of studies within a trial (PROMETHEUS). A long list of the most frequently used and promising strategies, along with any evidence on their effectiveness or cost-effectiveness was circulated to members of the working group, who independently ranked their top five strategies, along with their justification for choice of each strategy and its ranking. This ranking was discussed iteratively, with input from PPI partners and the wider Trial Forge SWAT Network members, to develop the final priority list