Following a recent presentation by the Personalised Cancer Care team at the London Cancer Transformation and Improvement Board (CTIBL) an agreed action was to establish a London Quality of Life (QoL) and Cancer working group. The first meeting was held in May with excellent representation from key stakeholders and several priority areas and actions were agreed for London.
The national Cancer Quality of Life survey in England was launched in September 2020 in response to the NHS Long Term Plan commitment to introduce an innovative quality of life metric to track and respond to the long-term impact of cancer. After a process of piloting and refining the methodology, the survey was launched in September 2020 to people with a diagnosis of breast, colorectal or prostate cancer; people are invited to participate 18 months after receiving a cancer diagnosis.
The initial phase of rollout, focused on those with a diagnosis of breast, prostate or colorectal cancer, with this expanding to all people with a diagnosis of cancer from October 2021. The survey includes questions from two well-known and well-tested quality of life questionnaires called EQ-5D-5L and EORTC QLQ-C30. EQ-5D-5L is a general survey used in many patient groups, while EORTC QLQ-C30 is used only in people with experience of cancer.
The Cancer Quality of Life Survey is world leading, routinely measuring Quality of Life outcomes to help improve care and outcomes for people diagnosed with cancer.
Some of the identified priority areas for London in relation to Quality of Life and Cancer:
1) Agree what steps are needed to a) increase the survey uptake in London and b) to understand what the data is telling us about the needs of cancer patients eighteen months after diagnosis so we can focus on service improvements.
2) Understand the role of the third sector and community organisations in supporting the uptake of the QoL survey and plan how to engage those organisations in understanding QoL in communities who may not want to complete the survey
3) Agree a London communications strategy
4) Data analysis-clarity on what data would be of most value to capture at regional level. To plan how data can be understood and used to improve clinical practice and address gaps in service provision
5) Link in with National QoL team and London cancer alliances to share best practice and avoid duplication
6) To ensure that patients’ voices are captured and used to help increase survey response uptake
7) To identify health inequalities and where needed target specific groups across London (what needs Pan London focus, what needs a local focus)
8) To engage with key stakeholders at key ‘touchpoints’ to consider what conversations are needed to embed this survey into routine professional conversations (primary care, secondary care, third sector providers).
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