The Cancer Quality of Life Survey helps us understand what matters most to patients. The information collected from the survey will help us to work out how best to support people living with and beyond cancer and will help to influence health policy, professional practice and patient empowerment nationally.

The survey was launched in 2020. Patients receive the survey around 18 months after their diagnosis. By filling out the survey, patients can help us understand more about the quality of life people living with and beyond cancer have.

Between September 2020 and September 2024, the Quality of Life survey response rate in West Yorkshire and Harrogate (WY&H) was 41.5%, compared to the England average of 42.6% for the same period.

However, response rates were notably lower among younger patients, women, individuals from more deprived communities, and those from minority ethnic backgrounds. This highlighted that the data we are able to collect may not fully reflect the diverse population across our six places.

Recognising this gap, we have undertaken work to better understand the barriers faced by these groups. Over recent months, several patient focus groups have been held to gather insights and improve engagement, ensuring that future response rates are higher and are more representative of our population 

What patients told us:-

Accessibility and readability of the survey letter:
  • General concerns: the group questioned whether the letter would result in any meaningful action, expressing scepticism with comments such as “Is anyone actually going to look at this letter and do anything?”
  • Readability challenges: One group member with dyslexia described the letter as “too scary” and difficult to read. Others found the layout overwhelming and repetitive, deterring them from engaging with the content.
  • Design recommendations: The group suggested that the letter be reformatted to resemble a poster or leaflet, with a more inviting and digestible layout. Simpler language, clearer headings, and visual elements could help increase engagement.​​​
Barriers to Participation
  • Digital divide: Some community members are not comfortable using QR codes or digital platforms. A more inclusive approach—offering paper copies or assistance—was recommended.
  • Cultural and language barriers: It was noted that in some households, younger family members may complete the survey on behalf of older relatives with limited English proficiency. This could result in feedback that does not accurately reflect the experiences of the person directly affected by cancer.
  • Emotional readiness: Several group members noted that the survey is sent 18 months post-diagnosis—a time when many people are still processing their experience. Some felt emotionally unready to revisit their cancer journey and therefore may avoid completing the survey.
  • Perceived abandonment post-treatment: A recurring view expressed was that once treatment ends, people feel that the NHS no longer checks in or offers sufficient support. This has led some to question the value of the survey, with one participant stating, “What’s the point in filling it out?”
Literacy Levels
  • Many individuals over the age of 60 may have lower literacy levels, further limiting engagement with written materials. The group felt that the current format may not be accessible to this demographic.
Suggestions for Improvement
  • The group strongly supported the idea of introducing Quality of Life survey champions —local volunteers who have been through cancer diagnosis and treatment themselves. These individuals could:
    • Help others navigate the survey process.
    • Serve as trusted community figures, especially when they share lived experience or cultural background with participants.
  • While recognising that this would rely on the voluntary sector, the group felt it could significantly boost survey uptake and trust.

Conclusion

The focus group emphasised that thoughtful redesign of communication materials—combined with culturally sensitive, community-led support—could greatly enhance participation in the QoL Cancer Survey. Addressing issues of trust, accessibility, and emotional timing are essential.

Despite the identified barriers facing some groups of patients, we are still able to use the data from the survey results to identify the issues that many patients are still facing, 18 months after their cancer diagnosis.

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Community of Practice

Across all six local places in West Yorkshire and Harrogate, patients have consistently reported concerns around fatigue and difficulty sleeping.

To address these issues and others, we have established a Community of Practice across West Yorkshire and Harrogate, bringing together key staff whose professional roles focus on learning from the results of the Quality of Life Survey, key themes identified and what can be done to address the issues. This group works collaboratively to:

  • Increase patient engagement and survey uptake.
  • Analyse and interpret QoL data to identify key trends.
  • Share good practice and available resources.
  • Review common themes collectively to drive improvements.

Emerging Common Themes

  • Sleep and fatigue
  • Emotional support
  • Awareness of where to access support

Supporting Patients Closer to Home

The Living With and Beyond Cancer team in West Yorkshire and Harrogate is developing a suite of videos designed to provide support and guidance, including:

  • Information on accessing support locally within patients’ own communities.
  • Practical advice on managing common concerns such as fatigue and sleep difficulties.
  • Support with completing the survey, with trusted community members available to assist patients where needed.