Background and Context:
The English National Cancer Survivorship Initiative (NCSI) identified the needs of people with CoTs as a priority. Reviews suggested at least 500,000 are alive with CoTs affecting quality of life (QoL).
An expert group, including lay representatives, commissioned multifaceted work to improve awareness and identification of CoTs, and improve outcomes for patients through self-management and better services (1). Macmillan’s work with pelvic cancer CoTs illustrates the approach.
The NCSI/Macmillan CoT programme used a range of data to estimate unmet need and identify timing for review of CoTs and interventions. A small number of questions relevant to pelvic cancer CoT symptoms were included in the Department of Health cancer survivorship surveys (2) to test their value in identifying symptoms that impact on QoL and therefore could be used to prompt professional/patient discussion of CoTs during follow up.
New care models, including patient information materials, screening through PROMs and algorithm-based management of bowel CoT symptoms were evaluated (3, 4).
Research to estimate the prevalence of CoTs (5) was used in focused media activities (6).
Surveys of health professionals attitudes to CoTs were carried out (7, 8, 9, 10), and partnerships were established with professional bodies and other pelvic cancer charities.
Four questions will identify bowel CoTs.
Algorithm-based management of bowel problems by gastroenterologists or nurses can significantly improve disabling symptoms but specialist services are needed for severe/complex cases.
Outcomes/What was learned:
Charity-led media activities have improved public and professional awareness of CoTs.
Collaborations have been fruitful between charities (e.g. Macmillan) and professional organisations, including:
• Royal College of Radiologists
• British Society of Gastroenterology
• Royal College of Nursing
• UK Oncology Nursing Society
• National Federation of Gynaecological Oncology Nurses
• Society of Radiographers.
A collaboration between charities, statutory bodies and researchers using a multifaceted approach can take forward a national CoT agenda.