Dataset Information

Evaluation of an intervention co-designed with key stakeholders to improve colorectal cancer screening participation

ABSTRACT: Background and study aims Colorectal cancer is one of the most commonly occurring types of cancer worldwide. It negatively impacts people’s quality of life and is costly for both health services and patients. If colorectal cancer is found early, it’s easier to treat and there’s a better chance of recovery. Screening is a very effective way of detecting the disease in its early stages. However, of those who are invited to take part in screening in Ireland, only 41.9% take part. Research from around the world has shown that there may be many reasons for people not taking up screening (e.g. fear or negative attitudes to screening, lack of time or ability to access screening, poor knowledge about the benefits of screening or healthcare professionals not advising patients to take part in screening). This study aims to improve colorectal cancer screening uptake and improve patient outcomes. This will be done by developing a new screening invitation letter and a new information leaflet to encourage people to participate in colorectal cancer screening. Who can participate? People aged 60 years old who are invited to participate in colorectal cancer screening for the first time and randomly allocated by the National Screening Service to be invited to participate in the study What does the study involve? Participants are invited to complete an online consent and a questionnaire accessible online. They can complete this questionnaire whenever suits them, within 3 months from the receipt of the letter. This takes about 15 minutes. The data collected in the questionnaire will be treated anonymously. At the end of the questionnaire, participants will be offered the possibility to provide their contact details on another form if they wish to participate in an interview (about 30-60 minutes depending on their availability) to give more feedback about the BowelScreen programme and the materials they received. Their contact details will not be related to their questionnaire responses. Completing the questionnaire does not require them to participate in an interview.

DISEASE(S): Participation In Colorectal Cancer Screening In General Population

PROVIDER: 2753918 | ecrin-mdr-crc |

REPOSITORIES: ECRIN MDR

ACCESS DATA

Similar Datasets

Project description:Background and study aims: Colorectal (bowel) cancer is the second leading cause of cancer death in the UK, and costs the National Health Service (NHS) more than £300 million a year in treatment costs. Patient survival could be increased and, costs very much reduced, if patients with bowel cancer received their diagnosis earlier, allowing treatment to begin earlier. The NHS Bowel Cancer Screening Programme (NHSBCSP) was introduced in England in 2006, and aims to screen men and women aged between 60 to 74 years of age for bowel cancer every two years using the faecal occult blood test (FOBt). Initial studies have shown that bowel screening is effective, but the number of patients who participate in screening have been quite low, with only around half of all the people who are invited to participate returning their FOBt kit. The success of the NHSBCSP relies on a high number of patients participating, and the development of new ways to improve the number participating after they are invited to participate. The main aim of the study is to assess how effective a GP reminder and additional FOBt kit are on increasing the number who participate in bowel cancer screening, when they have not participated following a previous invitation. Who can participate? All adults eligible for bowel screening (aged between 60 to 74 years old). These were patients at a participating general practice in the West Midlands, where the screening rate is less than 50%. These patients had been invited to participate in bowel screening but had not returned their FOBt within 13 weeks of initial invitation by the Midlands and North West Bowel Cancer Screening Hub. What does the study involve? We will randomly allocate the participants to one of two groups: 1. GP reminder to participate in bowel screening and additional FOBt kit, OR 2. No additional contact We compared how may people participated in bowel screening after 13 weeks. This was measured by the number of FOBt kits that were returned to the bowel screening hub by patients in each group. This allowed us to assess if the GP reminder to participate in bowel screening and additional FOBt kit was successful in increasing the participation in bowel screening. A small interview was carried out with some patients who received the GP reminder who returned a FOBt kit.

Project description:The purpose of this study is to learn about Health-related Quality Of Life (HRQoL) in patients enrolled in the Rare Kidney Stone Consortium (RKSC) registries. Quality of life studies look at different aspects of both physical and mental components of people's lives. HRQoL data for people affected by kidney stones are not currently available for people followed over time. All participants enrolled in the RKSC registries will be invited, via email or postal mail, to participate in this study. Health-related quality of life in people with rare kidney stones enrolled in the RKSC registries will be measured. Instruments used in this study are the SF-10 for pediatric participants and SF-36v2 for adult participants. The surveys will be completed online. Participants without a computer or internet access will participate using a paper version of the survey. These surveys will be done at enrollment and annually thereafter. The SF-36v2 includes 36 questions and is estimated to take 15 minutes for its completion, while the SF-10 includes 10 questions and could be completed in 5 minutes. The research questions are: <OL> <Li> Assessment of HRQoL in patients with rare kidney stones. Comparison of HRQoL results between rare kidney stone formers, general population and other populations with relevant chronic diseases.</Li> <Li> Comparison of HRQoL results in the same populations affected by different stones and analyzed with attention to the effects of various factors included in the disease registry, such as stone activity, burden of urologic interventions, medication and other treatments.</Li> <Li> Evaluation of HRQoL and its trends over time in patients undergoing treatment for rare kidney stones.</Li> </OL> About this study: The plan is to have 400 participants from all four registries take part in this multi-center study. The assessment of your HRQoL will be done annually for 5 years.

Project description:Background and study aims Bowel cancer is a National Health Service (NHS) priority as 1 in 20 people will develop the disease and half of those will die, equating to 17,000 each year in the UK. Bowel cancer is largely preventable via the timely detection and removal of precancerous growths in the bowel (called adenomas) and chances of survival are improved greatly if bowel cancer is detected early, before the disease causes symptoms. As a result, screening tests for adenomas and bowel cancer in people who do not currently have symptoms are an important method for reducing the number of deaths from bowel cancer. However, the success of any screening test depends on people being willing to be tested so it is essential that tests are as acceptable as possible to invitees in order to maximise uptake. There are several tests that could be used to screen for bowel cancer, each with their own advantages and disadvantages, and there is no clearly superior option. For example, some tests are more accurate than others but screening invitees might consider these to be less convenient than alternatives. It is currently unclear which test people would be most likely to have. It is also uncertain what the specific reasons are that underpin these preferences. This study aims to answer these questions. Who can participate? We are recruiting members of the public who are representative of individuals who have not had bowel cancer screening before but are approaching the age at which it is offered. We are sending out questionnaires to men and women aged 45-54 years via their General Practitioner. We are also using several other criteria to ensure that people in our study are similar to those who would be offered screening. For example, individuals will only be invited to take part if they have not previously had a diagnosis of bowel cancer or already have regular bowel tests for reasons unrelated to screening. What does the study involve? People who are eligible to take part in the study will be posted a questionnaire and written information about one of the four tests that we are investigating. The test that they will receive information about will be randomly determined. Individuals will be asked to read the information and complete the questionnaire, which asks questions on whether they believe they would be willing to have the test and their impressions of the different aspects of the procedure (for example, how convenient or inconvenient it might be for them). Participants will then send the questionnaire back to the main study centre, where we will compare peoples responses across the different tests once they have all been collected.

Project description:Autism spectrum disorders (ASD) are neurodevelopmental disorders characterized by delayed/abnormal language development, deficits in social interaction, repetitive behaviors and restricted interests. The heterogeneity in clinical presentation of ASD, likely due to different etiologies, complicates genetic/biological analyses of these disorders. DNA microarray analyses were conducted on 116 lymphoblastoid cell lines (LCL) from individuals with idiopathic autism who are divided into 3 phenotypic subgroups according to severity scores from the commonly used Autism Diagnostic Interview-Revised questionnaire and age-matched, nonautistic controls. Statistical analyses of gene expression data from control LCL against that of LCL from ASD probands identify genes for which expression levels are either quantitatively or qualitatively associated with phenotypic severity. Comparison of the significant differentially expressed genes from each subgroup relative to the control group reveals differentially expressed genes unique to each subgroup as well as genes in common across subgroups. Among the findings unique to the most severely affected ASD group are genes that regulate circadian rhythm, which has been shown to have multiple effects on neurological as well as metabolic functions commonly dysregulated in autism. Among the genes common to all 3 subgroups of ASD are 5 novel genes which appear to associate with androgen sensitivity, which may underlie the strong 4:1 bias towards affected males. Gene expression profiling of 116 LCL from autistic (87) and nonautistic (29) individuals were obtained using a custom-printed DNA microarray containing 39,936 elements (TIGR 40K Human array, GPL3427) and a reference design in which each sample was compared to the Stratagene Universal Human RNA standard. The 87 autistic samples were divided into phenotypic subgroups (language, mild, savant) on the basis of cluster analyses of scores from an autism diagnostic questionnaire, the Autism Diagnostic Interview-Revised instrument. Differentially expressed genes were determined for all autistic vs. control groups, as well as for each of 3 phenotypic ASD groups and controls.

Project description:One of the major barriers to CRC screening participation is a negative perception of colonoscopy as a painful and unpleasant procedure. Previously, by monitoring patient-reported outcomes as one of the colonoscopy quality performance measures, the investigators identified the endoscopist as the single, most important risk factor for painful colonoscopy. Therefore, the investigators propose a randomized controlled trial to analyse the effectiveness of directed training on the endoscopists painful colonoscopy rate. The study will be conducted in two phases: endoscopist categorization and design of training (I) and randomized controlled trial evaluating training effectiveness (II). Phase I will include endoscopists from Polish Colonoscopy Screening Programme (PCSP) willing to participate. Volunteers will be divided into underperformers, average performers and overperformers, based on their painful colonoscopy rate (obtained from PCSP database records) and will be invited to take part in the initial workshop focused on pain reduction during colonoscopy (conducted in a similar fashion to Train Colonoscopy Leaders (TCL) workshop, aiming at ADR improvement). On the basis of the differences in performance between over- and underperformers, categories of importance, target scores and a questionnaire for the assessment of factors for improvement will be developed. In Phase II, endoscopists from PCSP screening centres previously categorized as underperformers and average performers will be randomized in 1:1 ratio either to control (no intervention) or intervention arm. The subjects in the control arm will not be trained or informed about study participation. The endoscopists assigned to the intervention arm will be invited to take part in one training session designed in Phase I of the study (according to the evaluation questionnaire from Phase I). Willing overperformers will be asked to participate in the training as teachers. The training session will be divided into two parts: theoretical - presentation of research on painless colonoscopy - and practical - colonoscopy performance with commentary. Subjects matched 1:1 with trainers will take part in such a session, supervised by the study coordinator. Each endoscopist who underwent training in the second phase of the study will be sent a written, customized feedback on changes after the intervention and information about factors to improve (as per evaluation questionnaire from Phase I of the study). All endoscopists enrolled into Phase II will be followed through PCSP database for the endpoint of painful colonoscopy rate; the intervention arm will be compared with the control group at 6 and 12 months after feedback in order to investigate whether the adjusted painful colonoscopy rate improved as a result of the intervention.

Dataset Information

Evaluation of an intervention co-designed with key stakeholders to improve colorectal cancer screening participation

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets