Summary

Recent improvements in cancer screening, diagnosis and treatment mean that more people are living beyond cancer or are managing cancer as a long-term condition.1 Existing guidelines often neglect the needs of these survivors, even though they may experience the long-term effects of cancer for years following their primary treatment. People may experience psychological distress, sexual dysfunction and infertility, as well as changes in organ function, physical appearance, mobility, communication and cognitive ability.2 To help address the needs of cancer survivors, the European Society for Medical Oncology (ESMO) developed the Patient Guide on Survivorship. The guide – currently available in seven languages – covers important topics such as support and coping, life after treatment, preventive health and follow-up care.3 It is directed at survivors and can be used by carers, family, and friends of people who have or previously had cancer, as well as healthcare professionals.1

 

Challenge

Improvements in cancer screening, diagnosis and treatment have led to more people managing cancer as a long-term condition or being in complete remission. However, the effects of cancer on a person’s health, daily functioning, social relationships psychological wellbeing, healthcare and financial status can continue for years following cancer treatment. People may experience psychological distress, sexual dysfunction and infertility, as well as changes in organ function, physical appearance, mobility, communication and cognitive ability.2

Existing clinical guidelines often neglect the needs of survivors, including people with no active cancer, people who continue to receive treatment to reduce their risk of relapse, and people managing their cancer as a long-term condition. Transitioning from active treatment can be difficult, and survivors need adequate guidance and coordinated care to tackle the physical, psychological, social and economic issues they may face.2 3

Solution

The European Society for Medical Oncology (ESMO), European Cancer Patient Coalition (ECPC) and International Psycho-Oncology Society (IPOS) published a Patient Guide on Survivorship to address the needs of cancer survivors. The guide – available for download on the ESMO website – includes important information about:

  • support and coping, including rehabilitation, support groups, psychological support and the role of different healthcare professionals (e.g. oncologists, nurses, general practitioners)
  • life after treatment, including self-confidence, family and relationships, sexual life, fertility, returning to work, hobbies/interests and managing finances
  • preventive health, covering topics such as alcohol and smoking, exercise, nutrition, stress management, weight management, UV exposure, long-term treatment side effects, infections and vaccinations
  • follow-up care, such as detecting and managing treatment and cancer-related symptoms, preventing and detecting cancer recurrence or new cancers, managing comorbidities and keeping a personal health record.1

The guide is directed at survivors and can also be used by carers, family, and friends of people who have or previously had cancer, as well as healthcare professionals.1

 

What has it achieved?

Following its launch in English in 2017, the ESMO Patient Guide on Survivorship is now available in Croation, French, German, Greek, Italian and Spanish.3

The Patient Guide on Survivorship is part of a larger initiative to incorporate survivorship into the clinical landscape of cancer care. ESMO introduced a ‘follow-up, long-term implications and survivorship’ section in its Clinical Guidelines for healthcare professionals in 2017.4-6 It also published a handbook for oncologists covering rehabilitation issues during treatment and follow-up, with topics such as physical symptoms (e.g. pain and fatigue), psychological impact, sexual/reproductive issues, social and financial issues, and survivorship care planning.7

 

Next steps

Future efforts will focus on disseminating the guide and incorporating survivorship as a consistent component of oncology education. Patients, healthcare professionals and families/carers are also encouraged to use the guide as an advocacy tool to engage medical cancer societies and healthcare officials in survivorship (e.g. through local press conferences, social media, dissemination at conferences and community events, and meetings with key stakeholders).8 9

Further information

  • ESMO’s cancer guides for patients
  • ESMO’s patient guide on survivorship website, including a download link
  • A video of patient advocates and oncology professionals discussing the patient guide on survivorship
  • A report on the concept of survivorship and the needs of cancer survivors by the Institute of Medicine

References:

  1. European Society for Medical Oncology (ESMO) and European Cancer Patient Coalition (ECPC). 2017. Survivorship - ESMO Patient Guide Series. Brussels: ECPC
  2. Hewitt M, Greenfield S, Stovall EL. 2005. From cancer patient to survivor: lost in translation. Washington DC: Institute of Medicine and National Research Council
  3. European Society for Medical Oncology (ESMO). 2017. Patient Guide on Survivorship. Available here: https://www.esmo.org/Patients/Patient-Guides/Patient-Guide-on-Survivorship [accessed: April 2019]
  4. Postmus PE, Kerr KM, Oudkerk M, et al. 2017. Early and locally advanced non-small-cell lung cancer (NSCLC): ESMO Clinical Practice Guidelines for diagnosis, treatment and follow-up†. Annals of Oncology 28(suppl_4): iv1-iv21
  5. Marth C, Landoni F, Mahner S, et al. 2017. Cervical cancer: ESMO Clinical Practice Guidelines for diagnosis, treatment and follow-up†. Annals of Oncology 28(suppl_4): iv72-iv83
  6. Glynne-Jones R, Wyrwicz L, Tiret E, et al. 2017. Rectal cancer: ESMO Clinical Practice Guidelines for diagnosis, treatment and follow-up†. Annals of Oncology 28(suppl_4): iv22-iv40
  7. European Society for Medical Oncology. 2014. Rehabilitation issues during cancer treatment and follow-up. Lugano: European Society for Medical Oncology
  8. Apostolidis K. 2018. ESMO-ECPC cancer survivorship guide & cancer survivorship plan: a unique care and cancer advocacy tool. European Cancer Patient Coalition Annual General Meeting; 07/06/18; Brussels, Belgium
  9. European Society for Medical Oncology. 2017. Nikolaos Mitsimponas on the ESMO patient guide on survivorship. ESMO 2017; 11/09/17; Madrid, Spain