Life After Prostate Cancer Diagnosis

The following summarises the purpose of processing previously approved by the Public Health England (PHE) Office for Data Release (ODR):

This application is to link the data collected by LAPCD as part of the survey of men with prostate cancer, with routine data from PHE. With the objectives:

1) ensure maximum exploitation of LAPCD survey data through linkage with existing health datasets;

2) identify factors associated with good/poor QoL outcomes to inform future service delivery.

The request relates to data linkage (workstream 3 of the protocol) which will then be fed into benchmarking (workstream 4) and health economics (workstream 5). This will utilise several routine datasets to maximise the amount of clinical and treatment information available. Some of these datasets have already been linked through work done by NCRS and the National Cancer Intelligence Network (NCIN).

The University of Leeds has now ceased processing data for this purpose, however, wishes to retain it as they intend to submit a request to re-use the data for a new purpose.

Processing is permitted to support the secure retention of the data only.

Processing is permitted to support the secure retention of the data only

Processing is permitted to support the secure retention of the data only no outputs are expected to be produced under this version of the agreement.

The purpose of this extension is to retain held data only no expected benefits are to be yielded from this version of the agreement

The LAPCD study collected data on quality of life from mean with prostate cancer across the UK. In summary, the study team published 15 peer-reviewed articles, sent reports to each clinical team across the UK and published data on the Cancer Stats website. See https://www.lifeafterprostatecancerdiagnosis.com/academic-publications-and-toolkits/ for details. The data were also used by Movember to create the Men like me webtool (https://truenorth.movember.com/en-gb/men-like-me) to help men understand what’s normal after treatment for prostate cancer.

Specific benefits include:

Helping the system to better understand the health and care needs of populations – tailored reports were sent to each NHS Trust or Health Board across the UK detailing the survey results for the men diagnosed in that Trust/Board. This allowed clinicians to see what issues and difficulties men were facing after their treatment and also to compare with the country as a whole.

Advancing understanding of regional and national trends in health and social care needs – work was published examining regional variations in outcomes across the UK and highlighted areas with higher and lower quality of life and functional issues.

Better informing those planning health services and programmes, for example, initiatives to improve equity of access, experience and outcomes in the short or long term – several publications highlighted areas where improved access to services was required. For example, results showed that half of men were not offered services for sexual dysfunction and half of those who were offered did not find it helped. Another example was men taking hormone therapy reporting high levels of side-effects and needing increased support to deal with weight gain, hot flushes and depression.

Advancing understanding of the needs of carers supporting family members – interviews were undertaken with partners of men with prostate cancer and analysis gave insights into the issues they faced and how they felt they could be better supported.