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National Cancer Survivorship Initiative

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A national approach to improve the quality of Aftercare for survivors of TYA cancer - End of Treatment Summaries / Care Plans

Dr Helen Jenkinson, Consultant Paediatric Oncologist
on behalf of the NCSI steering group

Event held in London on Wednesday 9 October with the Teenage and Young Adult (TYA) Centre Champions and our Clinical Leads to share learning, good practice examples, the successes, challenges and barriers to implementing:

Treatment summaries
End of treatment care plans
Increased self-management for TYAs after cancer treatment
The output from the meeting will be to define what support NHS IQ can provide locally to assist TYA teams in order to make progress with their implementation plans.

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  • From the CYP perspective what do we know to shape our service <br />
  • 9 WORKSTREAMS <br />
  • CCLG centres were asked whether they were interested in doing projects to achieve the vision documents aims <br />
  • CCLG centres were asked whether they were interested in doing projects to achieve the vision documents aims <br />

National Cancer Survivorship Initiative National Cancer Survivorship Initiative Presentation Transcript

  • National Cancer Survivorship Initiative A national approach to improve the quality of Aftercare for survivors of TYA cancer End of Treatment Summaries / Care Plans Dr Helen Jenkinson, Consultant Paediatric Oncologist on behalf of the NCSI steering group
  • Introduction Estimated numbers of five-year survivors alive at the end of successive calendar years, by attained age in years. Great Britain, 1971-2005 • More than 40,000 survivors of childhood cancer in UK • 1 in 750 young adults survivors • 50% are adults • Expanding by 1250/yr Modified from Charles Stiller ‘Childhood Cancer in Britain’ 2010 National Cancer Survivorship Initiative
  • Consequences of Cancer Treatment Mortality studies Total Survivors Morbidity studies • 62% had at least 1 chronic condition • 28% had severe/life threatening illness • Cumulative incidence of a chronic condition at 25 years was 67% National Cancer Survivorship Initiative
  • Use of the end-of-treatment summary (EOTS) USA Inst. Of Med. Report 2006 “From Cancer Patient to Cancer Survivor: Lost in Transition” • recommended implementation of treatment summaries and survivorship care planning – care plans have not been formally evaluated by scientific studies but their implementation is “common sense” – “have strong face validity and can reasonably be assumed to improve care unless and until evidence accumulates to the contrary” – “further health services research should be undertaken to assess the impact and costs associated with survivorship care plans, and to evaluate their acceptance by both cancer survivors and health care providers” (IOM report, 2006) National Cancer Survivorship Initiative
  • Role of EOTS • • • • • • • • Optimise continuity between primary / secondary / tertiary care Optimise coordination of care Clarify roles in long term follow-up Provide important information for health care community Improves patient understanding Empower survivors and encourages self-management Improve uptake of follow up care with improved attendance Easy access to information for a mobile population to share with GP, University, Occupational Health, Insurance … • Improved patient experience and quality of care National Cancer Survivorship Initiative
  • Components of a treatment summary • Background information: – – – – – – – – Demographics Diagnosis Treating centres Complications Significant events Transfusion history Allergies Dates of completion / relapse • Therapeutic summary – Treatment protocol, chemotherapy, surgery, radiation fields, cumulative doses and stem cell transplantation • Potential long term effects National Cancer Survivorship Initiative
  • Components of a survivorship care plan • Recommendations for screening and follow up based on age, interval and treatment received • Systems at risk • Recommendations for cancer screening/ surveillance for treatment effects – Scheduling – Who will do it • • • • • • • • • Information on possible late and long term effects Information on possible signs of recurrence and secondary cancers Psychosocial, school, occupation and employment issues Healthy behaviour advice Immunizations Genetic testing Clear timeline for follow-up care and appropriate physician to provide it Should be written by principal provider who coordinated oncology treatment Personalized, dynamic National Cancer Survivorship Initiative
  • What do survivors want? • Information on: – F/U care & surveillance – Health promotion – Late effects – Interpersonal/emotional issues – Support groups – Insurance & returning to work – Sexual function & fertility – Genetic screening (Narsavage, 2003, Beckjord, 2008, Michel 2009) National Cancer Survivorship Initiative
  • Timing- When to give? • Consultation at end of treatment – “teachable moment” (Ganz, 2005) • If patient too young to be presented information at end of treatment, present to parents, then to patient when appropriate • Update care plan regularly and at transition to GP follow-up/ adult care. National Cancer Survivorship Initiative
  • Examples of EOTS / Care plans Trust logo Contact details of late effect service Christie / GOSH Name Telephone no E-mail Fax Treatment Summary and Long Term Follow Up Plan Name: Hosp/NHS No: Date of birth: Sex: Address: Consultant: Diagnosis Diagnosis Date: Stage/Group: Treatment End Date: / Trial/Protocol: Recurrence of Disease Date Site/s Select Management Summary Select Select Chemotherapy Select Drug Effects to Monitor Dose Select Select Select Surgery Date Select Details Radiotherapy Date Site/s Select Total Dose Fractions Normal Tissues within Field Select Gy / / Select Gy / / Bone-marrow transplantation/PBSC Type Conditioning Regimen National Cancer Survivorship Initiative Select Select Date Notes
  • Evaluation: Methods Issued Care Plan to 148 survivors across 6 National test sites at  End of treatment  Entering LTFU  Transition to adult services Questionnaire evaluation 62 young people and 8 parents were given the proposed TS/CP National Cancer Survivorship Initiative Survivors feedback Results Layout/Detail satisfaction 85% Patient statistics • Ages 12-35 yrs • 1-26 years post treatment TS/CP useful/very useful • 83% young people • 88% of parents • 94% of shared care doctors • 90% of primary care physicians ‘used it during a consultation for eye surgery’ ‘saves me explaining to doctors my medical history’ ‘used it for school records and applying to university’ ‘took it with me abroad – just in case’ ‘took it to America to give to my college so they aware of my limitations’ ‘used it when I went to Accident and Emergency to show the doctors ’
  • Treatment Summary Insert GP Contact Details Address Insert Trust Logo and Dear Dr X NCSI Adult Workstream Re: Add in patient name, address, date of birth and record number Your patient has now completed their initial treatment for cancer and a summary of their diagnosis, treatment and ongoing management plan are outlined below. The patient has a copy of this summary. Diagnosis: Date of Diagnosis: Organ/Staging Local/Distant Summary of Treatment and relevant dates: Treatment Aim: Possible treatment toxicities and / or late effects: Advise entry onto primary care palliative or supportive care register Yes / No DS 1500 application completed Yes/No Prescription Charge exemption arranged Yes/No Alert Symptoms that require referral back to specialist team: Contacts for re referrals or queries: In Hours: Out of hours: Other service referrals made: (delete as nec) District Nurse AHP Secondary Care Ongoing Management Plan: (tests, appointments etc) Social Worker Dietician . Clinical Nurse Specialist Psychologist Benefits/Advice Service Other Required GP actions in addition to GP Cancer Care Review (e.g. ongoing medication, osteoporosis and cardiac screening) Summary of information given to the patient about their cancer and future progress: Additional information including issues relating to lifestyle and support needs: Completing Doctor: National Cancer Survivorship Initiative Signature: Date:
  • Newcastle Contact details of Long-term follow-up service: Telephone 0191 28 20283 Fax 0191 28 24726 Nicola Davies (Specialist Nurse) 0191 282 9582 Treatment Summary and Long Term Follow Up Plan Name: Date of birth: Address: Hosp/NHS No: Sex: Consultant: Diagnosis: Trial / Protocol: Diagnosis date: Treatment end date: Relapse Date Site(s) select Management Summary Anti Cancer Drugs select Drug Effects to Monitor Dose /M2 2 Anthracycline (specify which) Total Anthracyclines (Doxorubicin equivalent) 2 Cyclophosphamide 2 Etoposide select select select select select Anti Cancer Surgery Date Details Radiotherapy Date Site/s National Cancer Survivorship Initiative End date Total Dose 2 2 2 2 select select Total Dose Gy Fractions Normal tissues within field
  • 1 Cancer Treatment Plan and Summary ASCO [Insert Practice Name/Info Here] The Treatment Plan and Summary is a brief record of major aspects of cancer treatment. This is not a complete patient history or comprehensive record of intended therapies. Patient name: Patient ID: Medical oncology provider name: PCP: Patient DOB: (___/___/___) Age: Patient phone: Support contact name: Support contact relationship: Support contact phone: BACKGROUND INFORMATION Symptoms/signs: Family history/predisposing conditions: Major co-morbid conditions: Tobacco use: □ No □ Yes, past □ Yes, current (If current, cessation counseling provided?: □ Yes □ No) Cancer type/location: Diagnosis date: (___/___/____) Is this a new cancer diagnosis or recurrence?: □ New □ Recurrence (date: ___/___/____) Surgery: □ None □ Diagnosis only □ Palliative resection □ Curative resection Surgical procedure/location/findings: Tumor type/histology/grade: STAGING Study Date Findings T stage: □ T1 □ T2 □ T3 □ T4 □ Not applicable M stage: □ M0 □ M1 □ Not applicable Stage: □ I__ □ II__ □ III__ □ IV__ □ Recurrence Location(s) of metastasis or recurrence (if applicable): TREATMENT PLAN N stage: □ N0 □ N1 □ N2 □N3 □ Not applicable Tumor markers: Alternative staging system: ___________________ TREATMENT SUMMARY White sections to be completed prior to chemotherapy administration, shaded sections following chemotherapy Height: in/cm Pre-treatment weight: lb/kg Post-treatment weight: lb/kg Pre-treatment BSA: Treatment on clinical trial: □ Yes □ No Name of chemotherapy regimen: Chemotherapy start date: (___/___/____) Chemotherapy end date: (___/___/____) Chemotherapy intent: □ Curative, adjuvant or neoadjuvant □ Disease or symptom control ECOG performance status at start of treatment: ECOG performance status at end of treatment: □0 □1 □2 □3 □4 □0 □1 □2 □3 □4 Chemotherapy Drug Name Route Dose mg/m2 Schedule Dose reduction # cycles administered □ Yes ______% □ No □ Yes ______% □ No □ Yes ______% □ No □ Yes ______% □ No □ Yes ______% □ No □ Yes ______% □ No Major side effects of this regimen: □ Hair loss □ Nausea/Vomiting □ Neuropathy □ Low blood count □ Menopause symptoms □ Cardiac □ Other _________________________ National Cancer Survivorship Initiative □ Fatigue
  • Lance Armstrong National Cancer Survivorship Initiative
  • The UK picture: EOTS utilisation National Cancer Survivorship Initiative
  • The UK picture: care plan utilisation National Cancer Survivorship Initiative
  • Next steps: • Introduction of a standard proforma • Agreement on core content with ability to adapt to suit local requirements • IT developments to ease completion • Modes of delivery to suit TYA community: app, email, paper .. • Support for completion at end-of-treatment • Implementation in TYA centres nationally National Cancer Survivorship Initiative