Caring for Teenage and Young Adult Cancer Patients

Transcription

1 Caring for Teenage and Young Adult Cancer Patients Kate Law Clinical Nurse Specialist Teenagers and Young Adults Sam Smith TYA Nurse Consultant

2 The Christie Hospital, Manchester

3 TYA Cancer Describing the population Nationally recognised as years children s services adult or TYA services Late onset paediatric tumours Early onset of adult tumours True TYA cancers; Hodgkins Disease Bone tumours Soft tissue sarcoma Germ cell tumours (brain)

4 Average Annual Incidence in TYA (16-24 years) Source: North West cancer Intelligence Service (NWCIS 2006/2008 data) Leukaemia Lymphoma CNS/Brain Bone STS Germ Cell Skin Carcinoma Other yrs yrs

5 New patients (Christie) 2010 Total = 128

6 Cancer in TYA s The Challenges. Cancer is the most common cause of non-accidental death in this age group Survival rates for TYA s is less improved compared to adults & children Incidence in TYA s is rising TYA access to clinical trials is poor No systematic referral pathways Many TYA s receive a late diagnosis Very small numbers in a lot of centres

7 Current developments and practice changes TYA Principal Treatment Centres TYA Care subject to Peer Review Referral pathways Implementation of Patient Choice All to discussed by the TYA specialist team Blueprint of Care (June 2012)

8 Challenges in TYA Cancer Care Paediatric TYA Adult Collaboration and partnership working Site Specific and TYA specialists Change In Culture

9 Challenges of Cancer in TYA Vulnerable life stage Developing independence and autonomy Executive decision making skills not fully formed Developing own identity Critical stage in educational and vocational plans Developing sexuality and intimacy Intense relationships

10 Challenges in TYA Cancer Unexpected and rare Fear and loss; Isolation from peers Loss of control Loss of freedom Challenges self esteem and body image Altered life plans; Fertility issues Education Occupation Challenges family dynamics Increased dependence Cancer overwhelms TYA s coping skills

11 The Brain debate The teenage brain is not just an adult brain with fewer miles on it, says Frances E. Jensen Brain not fully formed until aged 25 years Not all the wiring is complete in prefrontal cortex Impulse and self-control Judgement Decision-making Planning Organisation Emotion

12 Professional challenges Personalised and family centred care Time intensive Adherence Consent Control, choice and reality Lifestyle stage - may require different level of acceptance to risk taking behaviour?

13 Teenagers and Young Adults Treatment is lengthy and complex Toxicities Long term implications of treatment Complex life stage Challenging in practice

14 Challenges for TYA haematology patients Acute and rapid onset Socially isolated Removed from normal environments Removed from normal activities Parent/carer relationships Enforced dependence Boredom Fear Sterile and rigid environment

15 Transplant specific challenges for TYAs Overwhelming amount of information Emotional time at point of diagnosis Invasive tests Change to daily routine Intense environment Boredom Adjustment over a period of time Parent relationships change

16 A Multidisciplinary approach TYA Nurse Consultant/ Nurse specialist TYA Nurses Disease Specific Nurse Specialists Youth support coordinator + Play Specialist Complimentary Therapists Occupational therapy Physiotherapy Psycho Oncology Chaplaincy Dietetics Social Work

17 Young people not patients Focus is to treat young person as a young person NOT a patient Enable young people and their carers to take part in social and therapeutic activity and distraction where possible.

18 Care of Teenagers and Young Adults Individualise care Recognise TYA coping strategies Allow some control Provide age appropriate information Support will continue after treatment

19