Download 1500 Karen Stanley

“What happens next?”
The role of the Lymphoma End of Treatment clinic
Karen Stanley
Macmillan Lymphoma Clinical Nurse Specialist
[email protected]
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
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2.5 million people living with cancer diagnosis in UK in 2015 (Macmillan
Cancer Support, 2016)
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Five year survival rate increased by 21% since 2010
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National Cancer Survivorship Initiative (NCSI) set up in 2008 to address
survivorship issues.
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Living with and Beyond Cancer (DOH & Macmillan 2013) recommend
recovery package – care planning, treatment summaries, health &well
being events
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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)
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Feel unsure at transition point from cancer patient to cancer survivor“what’s next?”
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Many describe feelings of abandonment, uncertainty & anxiety
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Readjustment difficulties with an expectation and pressure to resume
”normal life” on completion of tx
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EOT described as “a teachable moment” keen to learn more about own
health (Ganz, 2005)
Local follow up (2010)
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No formal End of Treatment discussion- standard follow up appt
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Traditional medical model ”one size fits all”
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Patients seen by one of 6 doctors, no consistency in information given
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Follow up procedure not explained
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Little discussion of short and long term effects, sign posting, practical
support or advice
What is an End of Treatment Consultation & summary?
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Formal consultation during which patient is provided with an
individual written treatment summary (ETS) and support plan on
completion of initial treatment.
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Patient completes an electronic Holistic Needs Assessment
(Macmillan, 2012) on arrival, specific issues identified for
discussion by patient addressed pt during consultation
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Copy of ETS sent to patient and GP
Aims of clinic
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Explain follow up, S&S relapsed disease
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Provide a holistic assessment to identify individuals needs
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Provide support for individuals needs & priorities
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Assist patients self manage- reduce unplanned appts
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Signposting/ timely referral to other services
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Reaffirm key worker role
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Improve communication between cancer centre and GPs
Getting started
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Set up in 2011
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2 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
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Pts indentified in pre- clinic meeting, referrals made by any team member
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Summary template developed ( 4 pages) and completed electronically
by CNS during/ after consultation.
Content of treatment summary
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Diagnosis and stage of disease
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Summary of treatment regime, treatment intent
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Symptom profile/ impact of tx/ complications
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Possible consequences of treatment or toxicities
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Follow up schedule with “screening” plan- bloods, scans etc
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Signs & symptoms of recurrence- who to discuss concerns with
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Key worker and other contacts (Acute oncology etc)
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Any ongoing tx e.g. maintenance, clinical trial etc
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Referrals to other specialities- fertility, dietician, psychology
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Sign posting to charities/outside agencies/support groups
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Self management programme referrals- stress management, physio,
comp therapies
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Healthy lifestyle advice
•
Summary of information given and key concerns identified
Findings
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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
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Reduction in unplanned appointments (difficult to quantify)
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Powerful enabler to empower patients to manage consequences of tx and
their recovery
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Increased levels of patient satisfaction
Feedback & evaluation
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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
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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): 6172- 6179
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: 179-189.
Department of Health (2010). The National Cancer Survivorship Initiative Vision. London: NHS [online]. Available
at: http://www.ncsi.org.uk/wp-content/uploads/NCSI-Vision-Document
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:
https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/181054/9333-TSO-2900664NCSI_Report_FINAL.pdf
Ganz PA. (2005) A teachable moment for oncologists: cancer survivors, 10 million strong and growing. Journal of
Clinical Oncology, 23(24) 5458-5460.
Macmillan (2016) Electronic Holistic Needs Assessment [online]. Available at:
http://www.macmillan.org.uk/aboutus/healthandsocialcareprofessionals/macmillansprogrammesandservices/reco
verypackage/electronichollisticneedsassessment.aspx
National Cancer Survivorship Initiative (2012).Treatment Summary- sharing good practice [online]. Available
at:http://www.ncsi.org.uk/wp-content/uploads/Treatment-Summary-Sharing-Good-Practice.pdf