E-poster Presentation 2014 World Cancer Congress

Establishing a national model for the detection and management of cancer treatment related consequences (CoT): a case study based on the collaboration between a British national charity and Department of Health in relation to consequences of treatment of pelvic cancers. (#1084)

Elizabeth Jane Maher 1 , Lesley Smith 1
  1. Macmillan Cancer Support, London, United Kingdom

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.

Programme/Policy Process:

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.

  1. Department of Health, Macmillan Cancer Support and NHS Improvement. 2010. The National Cancer Survivorship Initiative Vision.
  2. Glaser AW, Fraser LK, Corner J, Feltblower R, Morris EJA, Hartwell G, Richards M. Patient-reported outcomes of cancer survivors in England 1–5 years after diagnosis: a cross-sectional survey. 2013, BMJ Open 3:e002317.
  3. Andreyev HJN, Benton BE, Lalji A, Norton C, Mohammed K, Gage H, Pennert K and Lindsay JO. Algorithm-based management of patients with gastrointestinal symptoms in patients after pelvic radiation treatment (ORBIT): a randomised controlled trial. The Lancet 2013. 382, Issue 9910, Pages 2084-2092.
  4. Henson CC, Davidson SE, Ang Y, Babbs C, Crampton J, Kelly M, Lal S, Limdi JK, Whatley G, Swindell R, Makin W, McLaughlin J. Structured gastroenterological intervention and improved outcome for patients with chronic gastrointestinal symptoms following pelvic radiotherapy. 2013. Support Care Cancer. 2013 Aug;21(8):2255-65.
  5. Macmillan Cancer Support. Throwing light on the consequences of cancer and its treatment. www.macmillan.org.uk/throwinglight
  6. Macmillan Cancer Support. Press release. Half a million UK cancer survivors faced with disability and poor health. 19 July 2013. http://www.macmillan.org.uk/Aboutus/News/Latest_News/HalfamillionUKcancersurvivorsfacedwithdisabilityandpoorhealth.aspx
  7. Henson CC, Andreyev HJ, Symonds RP, Peel D, Swindell R, Davidson SE. Late-onset bowel dysfunction after pelvic radiotherapy: a national survey of current practice and opinions of clinical oncologists. 2011, Clin Oncol 23:552-557.
  8. Henson CC, Davidson SE, Lalji A, Symonds RP, Swindell R, Andreyev HJ. Gastrointestinal symptoms after pelvic radiotherapy: a national survey of gastroenterologists. 2012, Support Care Cancer 20:2129-2139.
  9. Cox A and Faithfull S. 2013. ‘They’re survivors physically but we want them to survive mentally as well’: health care professionals’ views on providing potential late effect information. Support Care Cancer 2013 Sep;21(9):2491-7.
  10. Faithfull S, Samuel C, Lemanska A, Warnock C, Greenfield D. Workforce confidence and readiness in providing long-term care for cancer survivors: a training needs analysis. 2014 Manuscript submitted for publication.