JMIR Publications

ABSTRACT

Background:

There are more than 3M people in the UK living with a diagnosis of cancer. These are a varied group of people, ranging from those who had curative surgery 20 years ago to those who have exhausted all options and are under palliative care. However, the prevalent population is much larger than the incident population, and is under-researched, and we know very little about their healthcare utilisation or quality of life. In addition, there are open methodological questions about which questionnaires are best to use and how best to ask people for this information.

Objective:

To assess the feasibility of implementing, measuring and assessing the impact of timing on completion of questions about data linkage and the performance of different approaches to collecting quality of life and healthcare utilisation data in cancer survivors in a scalable robust manner via a pilot clinical trial.

Methods:

We designed and implemented an online randomised observational clinical study using an electronic survey platform. We provided trial information and obtained informed consent from all participants online and used randomisation to assess the acceptability of different quality of life tool and to assess the impact of timing on completion of questions about data linkage. We piloted the study in Northwest London and compared our trial population to the underlying patient population from the WSIC dataset.

Results:

135/345 GP practices in NWL participated, and sent SMS messages to 25044 people, of whom 2518 accessed the survey (9%); in addition, 761 accessed the survey via email and a further 15 participants via social media. 1600 provided informed consent and completed the EQ-5D-5L questionnaire and these formed our analytical cohort. The median age of participants was 68 years; 46% were female, 72% heterosexual. 15% from an ethnic minority. The commonest tumour sites were breast, prostate and colorectal cancer (respectively 35%, 15% and 11%). 67% of participants had been diagnosed more than 5 years ago. 90% described themselves as cured. 46% had accessed healthcare services in the last 12 months. Of those working, 33% had reduced their hours because of their diagnosis. 22% were disabled and 33% reported that the standard QoL questionnaires did not cover their cancer-related symptoms and participant rating of additional QoL questionnaires was broadly similar. 74% agreed to linkage with national cancer data.

Conclusions:

The implementation, and delivery of an online observational trial are feasible and enable us to recruit a prevalent cancer population, 2/3rds of whom had been diagnosed > 5 years ago. Most participants are happy to allow linkage to national cancer data. We used this pilot phase to refine some of search criteria, and the trial is currently recruiting nationally. Clinical Trial: NCT06095024: Investigating Digital Outcomes for Cancer Survivors in the Community.