Follow up and long term sequelae protocol

Transcription

1 Follow up and long term sequelae protocol The CCNCG should, in consultation with the POSCU MDTs and the PTC diagnosis and treatment MDT(s), PTC late effects MDT(s) and the TYA MDT, produce a single follow up and long term sequel protocol for the CCN which fulfils the following: It should require (and specify who is responsible for the production of) an end of treatment summary and follow up care plan for each patient completing potentially curative treatment; The end of treatment summary and follow up care plan should answer the questions: i) what treatment has been received ii) What is the role of the POSCU MDT and PTC diagnosis and treatment MDT in the patient's follow up and when does their role end iii) What is the role of the PTC late effects MDT and the TYA MDT in the patient's follow up, and when does their role begin iv) Which team or teams should be following the patient at which stage of their journey (this may include site specific MDTs) v) Which methods of surveillance should be used for late effects of treatment? vi) What should be monitored by way of relapse detection and health related quality of life? The end of treatment summary and follow up care plan should be completed within Six months of completion of potentially curative treatment.

2 The CCNCG follow up and long term sequel protocol should be distributed to at least the chairs of the network site specific groups in the cancer networks from which the CCN takes referrals. There should be accompanying instructions which require the ongoing distribution of the protocol to the lead clinicians of all the site specific 'adult' MDTs in the relevant cancer networks. Compliance: The protocol agreed by the chair of the CCN. The reviewers should randomly sample some end of treatment summaries. The reviewers should enquire as to the distribution process. Notes: The CCNCG for compliance with this measure should produce the protocol and the Individual MDTs, for compliance with their relevant measures, should agree to abide by it. The role of the various MDTs may differ according to the patient's original type of Children s cancer, thus the details of the follow up protocol may be, to an extent, disease type specific. Minor shortcomings in the completeness of distribution should not preclude compliance. The protocol may alternatively be distributed directly to all MDT lead clinicians. This measure does not specify the distribution of the protocol to the children's and TYA MDTs of the CCN itself since they are required to agree to it in the course of its production. 7A-124

3 Follow up and long term sequalae protocol Introduction This protocol describes the long term follow up for children and young adults following completion of cancer treatment. This protocol ensures patients and their families are fully informed of long term follow up, and enables the child/young adult to be monitored for any signs of relapse and to monitor any health related quality of life issues as well as late effects of treatment. This protocol should be read in conjunction with the treatment summary and long term follow up plan and the survivorship clinic proforma (appendix 1-4). All children on the completion of treatment will receive a treatment summary and long term follow up plan, including information on potential long term side effects of treatment received and a plan of ongoing investigations required following completion of treatment Treatment plan and follow up careplan will be given to the child/tya and family at first clinic appointment post completion of treatment Patients will be seen 4-6 weeks post treatment in a designated clinic according to their diagnosis It is the patients consultants responsibility to ensure long term treatment plan and follow up careplan is completed within 6 months post completion of treatment Children are initially seen in follow up clinic 4-6 weeks post treatment, and will be seen regularly in clinic dependent upon their diagnosis and clinical need, the interval between routine clinic appointments will increase again according to diagnosis and clinical need Children and young adults will receive long term follow up at the principal treatment centre at a consultant lead clinic until point of transfer to adult services and the late effects clinic at an adult principal treatment centre, however in some cases where it is deemed appropriate long term follow up maybe transferred to shared care centres

4 Children and young adults will be discussed at the late effects MDT at varying points- - on completion of treatment (MDT) - point of transfer to adult services (TYA MDT) - significant issues/late effects of treatment (Wednesday meeting/tya MDT) - Late effects MDT to take place monthly The end of treatment summary and follow up care plan will be given to- - patient and family - medical notes - shared care centre - GP - Other disciplines involved The end of treatment summary and follow up care plan will answer all questions stated in measure 09-7A-124 (see attached end of treatment summary and long term follow up plan appendix 1-3) Author: Michelle Wright, Advanced Nurse Practitioner. Date: September 2016 Review Date: September 2017 Contact Details of late effect service: Names : Dr James Hayden ( Alder Hey), Dr Nicky Thorpe ( Clatterbridge), Michelle Wright ( ANP) Alder Hey Hospital. Telephone no michelle.wright@alderhey.nhs.uk

5 Appendix 1: Leukaemia treatment summary Treatment Summary and Long Term Follow Up Plan 1: Disease Summary Name: Consultant: Diagnosis: Recurrence: End of treatment: Acute Lymphoblastic Leukaemia Stage/group: Trial/protocol: Familial factors and syndromes Complications during & after treatment Other problems Current problems Current medication

6 2. Treatment summary Chemotherapy: Yes Cyclophosphamide mg/m2 Etoposide 0 mg/m2 Total anthracycline mg/m2 (Doxorubicin equivalent dose) Methotrexate Intrathecal chemotherapy Vincristine Dexamethasone Cytarabine Asparaginase Surgery: No Radiotherapy: No Haematopoietic stem cell transplant: No 3: System review Heart problems: Low risk Pre-treatment Echo Post-treatment Echo Latest followup Echo Kidney problems: Low risk Latest BP U&Es Lung problems: No risk Growth problems: No risk Fertility problems: Low risk Semen analysis: Menarche: Contraception advice: Hormone problems: No risk Neurological problems: No Other organs/tissues problems: No Psychosocial/school/occupation issues: No

7 4. Follow-up care plan: Height weight Blood pressure Pubertal status Full blood count Echocardiogram Start Frequency Each appointment Each appointment As appropriate until established Each appointment for 2 years 5 yearly Level of care: 2 Frequency of follow-up: Yr1: 1-2 monthly, Yr2: 3 monthly, Yr3-5: 6 monthly Provider of follow-up: Alder Hey consultant-led clinic Review follow-up plan: Key Worker: Sr Michelle Wright Other professionals: Patient & parent information: Treatment summary /Care plan

8 Appendix 2: Solid tumour treatment summary Treatment Summary and Long Term Follow Up Plan 1: Disease Summary Name: Consultant: Diagnosis: Recurrence: End of treatment: Stage/group: Trial/protocol: Familial factors and syndromes Complications during & after treatment Other problems Current problems Current medication

9 2. Treatment summary Chemotherapy: Cyclophosphamide mg/m2 Etoposide mg/m2 Total anthracycline mg/m2 (Doxorubicin equivalent dose) Surgery: Radiotherapy: Date(s) Site(s) Total dose (Gy) Fractions Modality Haematopoietic stem cell transplant: - Donor source - Conditioning regimen - Total body irradiation GvHD (Click to select) Site (click) 3: System review Heart problems: Pre-treatment Post-treatment Latest followup Echo Echo Echo Kidney problems: Latest BP U&Es Pre-treatment GFR (ml/min/1.73m 2 ) Post-treatment GFR (ml/min/1.73m 2 ) Follow Up GFR (ml/min/1.73m 2 ) Lung problems: Pre-treatment Result Post-treatment Result

10 Growth problems: Final height (cm) Onset of puberty Growth hormone: Fertility problems: Semen analysis: Menarche: Contraception advice: Hormone problems: Neurological problems: Other organs/tissues problems: Psychosocial/school/occupation issues: 4. Follow-up care plan: Start Frequency Level of care: Frequency of follow-up: Provider of follow-up: Review follow-up plan: Key Worker: Other professionals: Patient & parent information: Review Date Sept 2017

11 Appendix 3: CNS treatment summary Treatment Summary and Long Term Follow Up Plan 1: Disease Summary Name: Consultant: Diagnosis: Recurrence: End of treatment: Stage/group: Trial/protocol: Familial factors and syndromes Complications during & after treatment Other problems Current problems Current medication 2. Treatment summary Chemotherapy: Cyclophosphamide mg/m2 Etoposide mg/m2 Total anthracycline mg/m2 (Doxorubicin equivalent dose) Surgery: Radiotherapy: Date(s) Site(s) Total dose (Gy) Fractions Modality

12 Haematopoietic stem cell transplant: - Donor source - Conditioning regimen - Total body irradiation GvHD (Click to select) Site (click) 3: System review Heart problems: Pre-treatment Post-treatment Latest followup Echo Echo Echo Kidney problems: Latest BP U&Es Pre-treatment GFR (ml/min/1.73m 2 ) Post-treatment GFR (ml/min/1.73m 2 ) Follow Up GFR (ml/min/1.73m 2 ) Lung problems: Pre-treatment Result Post-treatment Result Growth problems: Final height (cm) Onset of puberty Growth hormone: Fertility problems: Semen analysis: Menarche: Contraception advice: Hormone problems: Neurological problems: Other organs/tissues problems:

13 Psychosocial/school/occupation issues: 4. Follow-up care plan: Start Frequency Level of care: Frequency of follow-up: Provider of follow-up: Review follow-up plan: Key Worker: Other professionals: Patient & parent information:

14 Appendix 4: Survivorship clinic proforma SURVIVORSHIP CLINIC PROFORMA Date: / / Time: : Diagnosis: Stage: Date of Diagnosis: / / Protocol: Date of completion of treatment: / / Patient Name: AH Number/NHS number: DOB: Height: (centile) Weigh: (centile) BP: Age: Cardiac/renal toxic chemotherapy drugs received: Yes/No Surgery: Yes/No Dates: Radiotherapy: Yes/No Dates: Doses: Key worker: Family/patient given name and contact information of key worker: Yes/No Survivorship care plan/treatment summary filled in and given to family/patient: Yes/No Sent to GP/shared care centre: Yes/No Recent results (e.g. FBC, echo): Assessment: Toxicity and problems during treatment: Pubertal status: Underlying conditions: Current problems:

15 School/work: Emotional/Psychological issues: Discussion and health promotion (please tick if discussed): Benefits of exercise Healthy diet and nutrition Alcohol/drugs Smoking Self examination Sun awareness Current Medication: On Examination: Skin: ENT/fundi examination if applicable: Lymph: Respiratory: Cardiovascular: Abdomen:

16 Neurology/ MSK: Testicular examination if application/or education: Other: Plan: Referral to late effects MDT needed: Yes/No Continue to see in late effects clinic: Yes/No Transfer to transition/aftercure clinic: Yes/No If yes date of next appointment and frequency: Refer to Clatterbridge late effects clinic: Yes/No Investigations requested: Yes/No For ongoing investigations needed see long term follow up plan. TTO s Name (Print) Signature: Contact No: Review Date Sept 2017

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