Developing a National Cancer Patient Experience Survey for Under 16’s in England


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Juan Abad Madroñero, Megan Bilas, Emily Boxell, Philipa Kalungi, Amy Tallett, Caroline Hayes, Ruth Hudson, Melinda Smith, Peter Williamson

Abstract

Background

One of the key ways patient experience for cancer patients is captured in England is through the National Cancer Patient Experience Survey (NCPES). NCPES highlights patient experience for adults; however, no formal national mechanism for the experiences of children with cancer exists.

The aim of this research was to develop a new national survey for children under the age of 16, along with their parents, to understand experiences of cancer care and treatment. The survey findings will drive improvements in care delivery, allow commissioners to assess performance, and support the work of multiple stakeholders.

Method

Two face-to-face focus groups were conducted, each with six parents/carers of children with cancer. Individual interviews were conducted with nine children between the ages of 8-15, using a mix of face-to-face, telephone and video call methods. A topic guide was used to help structure the discussions. Qualitative data was themed and, along with existing literature, informed the development of the questionnaire. Extensive discussions with an expert Advisory Group also informed the content.

Three paper surveys were designed. A survey for parents/carers of children aged 0-7 and two surveys for children aged 8-11 and 12-15 to complete, with a section for parents/carers. The surveys were cognitively tested with 24 children between the ages of 8-15 along with their parents, and with 12 parents of children aged 0-7.

Results

The final questionnaires were composed of 57 questions in the 0-7 year-old version and 71 questions in the 8-11 and 12-15 year-old versions. The survey will soon be implemented nationally across England, inviting children aged under 16 who have recently received cancer care in the NHS to participate.

Conclusion

This new survey will provide the first ever national level insight into the experiences of children with cancer, and their parents, to provide actionable feedback on aspects of personalised care and patient experience in England. Results will be used nationally and locally to drive improvements in care delivery.

Impact statement

The survey will provide national and local insight into the experiences of children under the age of 16 with cancer, and their parents, to drive improvements in children’s cancer care in England.