An investigation of routes to cancer diagnosis in 10 international jurisdictions, as part of the International Cancer Benchmarking Partnership: survey development and implementation

Objectives This paper describes the methods used in the International Cancer Benchmarking Partnership Module 4 Survey (ICBPM4) which examines time intervals and routes to cancer diagnosis in 10 jurisdictions. We present the study design with defining and measuring time intervals, identifying patients with cancer, questionnaire development, data management and analyses.
Design and setting Recruitment of participants to the ICBPM4 survey is based on cancer registries in each jurisdiction. Questionnaires draw on previous instruments and have been through a process of cognitive testing and piloting in three jurisdictions followed by standardised translation and adaptation. Data analysis focuses on comparing differences in time intervals and routes to diagnosis in the jurisdictions.
Participants Our target is 200 patients with symptomatic breast, lung, colorectal and ovarian cancer in each jurisdiction. Patients are approached directly or via their primary care physician (PCP). Patients’ PCPs and cancer treatment specialists (CTSs) are surveyed, and ‘data rules’ are applied to combine and reconcile conflicting information. Where CTS information is unavailable, audit information is sought from treatment records and databases.
Main outcomes Reliability testing of the patient questionnaire showed that agreement was complete (κ=1) in four items and substantial (κ=0.8, 95% CI 0.333 to 1) in one item. The identification of eligible patients is sufficient to meet the targets for breast, lung and colorectal cancer. Initial patient and PCP survey response rates from the UK and Sweden are comparable with similar published surveys. Data collection was completed in early 2016 for all cancer types.
Conclusion An international questionnaire-based survey of patients with cancer, PCPs and CTSs has been developed and launched in 10 jurisdictions. ICBPM4 will help to further understand international differences in cancer survival by comparing time intervals and routes to cancer diagnosis.

The Reliability and Validity of a Child and Adolescent Participation in Decision Making Questionnaire

Background
There is a growing impetus across the research, policy and practice communities for children and young people to participate in decisions that affect their lives. Furthermore, there is a dearth of general instruments that measure children and young people’s views on their participation in decision making. This paper presents the reliability and validity of the Child and Adolescent Participation in Decision Making Questionnaire (CAP-DMQ) and specifically looks at a population of looked-after children where a lack of participation in decision making is an acute issue.
Methods
The participants were 151 looked after children and adolescents between 10-23 years of age who completed the 10 item CAP-DMQ. Of the participants 113 were in receipt of an advocacy service that had an aim of increasing participation in decision-making with the remaining participants not having received this service.
Results
The results showed that the CAP-DMQ had good reliability (Cronbach’s alpha = .94) and showed promising uni-dimensional construct validity through an exploratory factor analysis. The items in the CAP-DMQ also demonstrated good content validity by overlapping with prominent models of child and adolescent participation (Lundy 2007) and decision making (Halpern 2014). A regression analysis showed that age and gender were not significant predictors of CAP-DMQ scores but receipt of advocacy was a significant predictor of scores (effect size d=.88), thus showing appropriate discriminant criterion validity.
Conclusion
Overall, the CAP-DMQ showed good reliability and validity. Therefore, the measure has excellent promise for theoretical investigation in the area of child and adolescent participation in decision making and equally shows empirical promise for use as a measure in evaluating services which have increasing the participation of children and adolescents in decision making as an intended outcome.

Development and Evaluation of a Computer-Based, Self-Management Tool for People Recently Diagnosed with Type 2 Diabetes

Aim. The purpose of this study was to develop and evaluate a computer-based, dietary, and physical activity self-management program for people recently diagnosed with type 2 diabetes. 
Methods. The computer-based program was developed in conjunction with the target group and evaluated in a 12-week randomised controlled trial (RCT). Participants were randomised to the intervention (computer-program) or control group (usual care). Primary outcomes were diabetes knowledge and goal setting (ADKnowl questionnaire, Diabetes Obstacles Questionnaire (DOQ)) measured at baseline and week 12. User feedback on the program was obtained via a questionnaire and focus groups. Results. Seventy participants completed the 12-week RCT (32 intervention, 38 control, mean age 59 (SD) years). After completion there was a significant between-group difference in the “knowledge and beliefs scale” of the DOQ. Two-thirds of the intervention group rated the program as either good or very good, 92% would recommend the program to others, and 96% agreed that the information within the program was clear and easy to understand. 
Conclusions. The computer-program resulted in a small but statistically significant improvement in diet-related knowledge and user satisfaction was high. With some further development, this computer-based educational tool may be a useful adjunct to diabetes self-management.