Learning the benefits of survivorship programmes Lead Cancer Nurse Lyndel Moore from the Great Western Hospital in Swindon, UK, won an EONS travel scholarship to visit two leading US cancer hospitals to learn about their survivorship care programmes.
Report by: Lyndel Moore
My journey started in Baltimore at the John Hopkins Sidney Kimmel Comprehensive Cancer Center. I instantly felt a buzz in the air, as I met health professionals totally dedicated to their work and the patients in their care. Cancer survivorship work started in the USA in 2005 following the publication of the government paper “Lost in transition”. By 2015, all cancer centres in the USA are expected to have survivorship programmes in place or they will risk losing their accreditation. In 2007, staff from Johns Hopkins visited the Livestrong programme (www. livestrong.com) in Los Angeles to help establish their own programme. Additionally, the childhood cancer team had many survivors (85%) and were leading the way, having established long term follow-up programmes and late effects clinics. When I met with the chief administrator of the hospital, she commented on the key achievements for cancer survivorship which include: ●● end-of-treatment care planning and summaries for breast and colorectal patients ●● breast cancer retreats involving metastatic patient retreat and an adjuvant patient retreat ●● a cancer survivor day in June ●● a cancer rehabilitation programme
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●● development
of a website with webinars from experts on a variety of issues.
PAEDIATRIC ONCOLOGY Children start the survivorship programme five years after diagnosis, after which they are reviewed annually. The medical team are not involved in the follow-up unless there is a relapse. A nurse practitioner meets the survivor with their family until the child reaches puberty, after which the nurse will see them individually. Prior to each appointment, the patient or caregiver will complete CHADIS, a child health questionnaire. This looks into schooling and psychosocial issues. A summer camp is run for survivors aged 5-18 years. Generally 120 children attend and older survivors come back as counsellors. Breast cancer survivorship programme This programme was developed five years ago by healthcare professionals who were also breast cancer survivors. The breast unit sees over 700 new patients a year, with five medical oncologists and three additional ones offering a second opinion. Two nurse practitioners work autonomously within the survivorship clinic, providing end-of-treatment summaries and care plans at the end of active treat-
ment. Initially, the team reviewed the ASCO guidelines, Journey Forward (University of Pennsylvania) and Livestrong, but subsequently they developed their own summary. The team does not provide open access follow up, but all patients are followed in clinic for five years. No holistic assessment is completed but a checklist is reviewed. Information for patients is provided online on the hospital website, but with no hardcopy. Sixty-five videos are on the website covering issues such as exercise,