“What happens next?” The role of the Lymphoma End of Treatment clinic Karen Stanley Macmillan Lymphoma Clinical Nurse Specialist

Background Large London teaching hospital with 2 million patient contact episodes per year 250 of new pts diagnosed with lymphoma 2015, tertiary referral centre for clinical trials and RT Sub specialisation in ATLL, NK T cell, PTLD (renal) and HIV associated lymphomas

Cancer survivorship in UK 2.5 million people living with cancer diagnosis in UK in 2015 (Macmillan Cancer Support, 2016) Five year survival rate increased by 21% since 2010 National Cancer Survivorship Initiative (NCSI) set up in 2008 to address survivorship issues. Living with and Beyond Cancer (DOH & Macmillan 2013) recommend recovery package – care planning, treatment summaries, health &well being events Acknowledgement that many cancer survivors have unmet needs, particularly at the end of primary treatment (Armes et al, 2009)

Patient concerns at the End of Treatment (EOT) Feel unsure at transition point from cancer patient to cancer survivor- “what’s next?” Many describe feelings of abandonment, uncertainty & anxiety Readjustment difficulties with an expectation and pressure to resume ”normal life” on completion of tx EOT described as “a teachable moment” keen to learn more about own health (Ganz, 2005)

Local follow up (2010) No formal End of Treatment discussion- standard follow up appt Traditional medical model ”one size fits all” Patients seen by one of 6 doctors, no consistency in information given Follow up procedure not explained Little discussion of short and long term effects, sign posting, practical support or advice

What is an End of Treatment Consultation & summary? Formal consultation during which patient is provided with an individual written treatment summary (ETS) and support plan on completion of initial treatment. Patient completes an electronic Holistic Needs Assessment (Macmillan, 2012) on arrival, specific issues identified for discussion by patient addressed pt during consultation Copy of ETS sent to patient and GP

Aims of clinic Explain follow up, S&S relapsed disease Provide a holistic assessment to identify individuals needs Provide support for individuals needs & priorities Assist patients self manage- reduce unplanned appts Signposting/ timely referral to other services Reaffirm key worker role Improve communication between cancer centre and GPs

Getting started Set up in weekly clinic (fully coded with clerical support) with 4 x 45 minute consultations Patients made aware of “extra” appointment by CNS at diagnosis/ treatment, detailed in “Your Lymphoma Team” PIS Pts indentified in pre- clinic meeting, referrals made by any team member Summary template developed ( 4 pages) and completed electronically by CNS during/ after consultation.

Content of treatment summary Diagnosis and stage of disease Summary of treatment regime, treatment intent Symptom profile/ impact of tx/ complications Possible consequences of treatment or toxicities Follow up schedule with “screening” plan- bloods, scans etc Signs & symptoms of recurrence- who to discuss concerns with

Key worker and other contacts (Acute oncology etc) Any ongoing tx e.g. maintenance, clinical trial etc Referrals to other specialities- fertility, dietician, psychology Sign posting to charities/outside agencies/support groups Self management programme referrals- stress management, physio, comp therapies

Healthy lifestyle advice Summary of information given and key concerns identified

Findings Increase in (early) referrals for psychological support (22%), fertility assessment and post physiotherapy support programme ( 8%) Most frequent areas of need for further information were: diet & exercise, financial/ benefit advice & return to work Reduction in unplanned appointments (difficult to quantify) Powerful enabler to empower patients to manage consequences of tx and their recovery Increased levels of patient satisfaction

Feedback & evaluation Majority reporting got all information and advice required Data demonstrated pts felt listened to, particularly satisfied with explanation of follow up: “more confident about what to look out for and reassured I will be seen quickly if needed” “Explanation of follow up plan helpful as well as advice about cancer related problems” GPs reported that treatment intent and signs of recurrence reported as most valuable components by GP responding (25% response rate)

Next steps... Early discharge from follow up at 1 year Develop Haematology specific Health and Well Being events across cancer network accessible to all patients to complete “Recovery package”

References Armes J, Crowe M, Colbourne L, Morgan H, Murrells T, Oakley C, Palmer N, Ream E, Young A, Richardson A. (2009) Patients’ supportive care needs beyond the end of cancer treatment: a prospective, longitudinal survey. Journal of Clinical Oncology, 27(36): Beckjord EB, Arora NK, McLaughlin W, Oakley- Girvan I, Hamilton AS, Hesse BW (2008). Health-related information needs in a large and diverse sample of adult cancer survivors: implications for cancer care. Journal of Cancer Survivorship 2: Department of Health (2010). The National Cancer Survivorship Initiative Vision. London: NHS [online]. Available at: DOH (2013) Living with & Beyond Cancer: Taking Action to Improve Outcomes (an update to the 2010 The National Cancer Survivorship Initiative Vision) [online]. Available at: NCSI_Report_FINAL.pdf NCSI_Report_FINAL.pdf Ganz PA. (2005) A teachable moment for oncologists: cancer survivors, 10 million strong and growing. Journal of Clinical Oncology, 23(24) Macmillan (2016) Electronic Holistic Needs Assessment [online]. Available at: verypackage/electronichollisticneedsassessment.aspx National Cancer Survivorship Initiative (2012).Treatment Summary- sharing good practice [online]. Available at: