The Story of the IAM (TYA Holistic Needs Assessment) Jamie Cargill Teenage Cancer Trust Lead Nurse

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1 The Story of the IAM (TYA Holistic Needs Assessment) Jamie Cargill Teenage Cancer Trust Lead Nurse

2 Vision N TARGET Assess the impact on all aspects of a young person s life Identify and discuss individualised needs Empowerment and self management Develop a domain based framework when working in partnership with Teenagers and Young Adult s (TYA) and their support network

3 N TARGET the simple version To develop a mechanism whereby we ensure that all TYA cancer patients in the South West receive the best possible care and support.

4 Purpose of IAM N TARGET To capture patients priorities and needs To facilitate communication and relationship building To have a uniform approach to TYA care Southwest To prompt and educate staff in holistic needs of TYA patients via the TYA MDaT process Assessed at key points Diagnosis Relapse/significant event Prior to completing treatment Aftercare

5 What it is/was? N TARGET Domains 1. Physical activity 2. Family, Friends & relationships 3. Education & work 4. Housing, transport & finance 5. Activities, hobbies & social life 6. Drugs, alcohol & tobacco 7. Sex, sexuality and fertility 8. Thoughts & feelings 9. Faith, Spirituality & culture 10. My understanding of my condition now

6 N TARGET What is it? MDaT view Cancer introduction, Diagnosis, Prognosis, Treatment Pathway Pre-existing physical issues, effects from treatment Cancer introduction, Diagnosis, Prognosis, Treatment Pathway Pre-existing physical issues, effects from treatment Psychological Wellbeing Religion & Spirituality LEVEL 3 LEVEL 2 LEVEL 1 Cancer introduction, Diagnosis, Prognosis, Treatment Pathway Pre-existing physical issues, effects from treatment START Physical Needs Family & Relationships Who is their main support network? What are their needs? In a relationship? Sexual health discussed? Any fertility issues? Sex, Sexuality & Fertility Any issues for them or their support network? Drugs, Alcohol & Tobacco PATIENT PRIORITIES? Activities & Hobbies What do they like to do? Will cancer effect this? Housing & Finance Education & employment What are they doing? What do they want to do? How has cancer impacted this? Where do they live? Any accessibility or transport issues? Any financial issues? Referrals to grants made?

7 IAM Levels of support N TARGET Patient Professional Number of patients Level of support 3 2 This is really important and I may need more support I would like to talk to somebody about this We have discussed this and a specialist referral is required We have discussed this and with support can self-manage 1 I just need access to this information We have discussed, provided basic information and there are no issues

8 Which generates. N TARGET Faith, Spirituality and Culture Inner, Thoughts and Feelings My Understanding of my Condition Now Sex, Sexuality & Fertility Physical Wellbeing Drugs, Alcohol & Tobacco Family, Friends and Relationships Activities, Hobbies & Social Life Level of Support Education & Employment Housing, Transport & Finance

9 N TARGET Identify trends and service need Comparison by Disease - Average 1st Assesment Scores 3.0 Brain/CNS (n=9) Leukaemia (n=9) Physical Needs Family & Relationships Education & Employment Housing & Finance Activities & Hobbies Drugs, Alcohol & Tobacco Sex, Sexuality & Fertility Psychological Wellbeing Religion & Spirituality

10 N TARGET IAM ehna the beginning! Not used consistently Not all TYA s aware of the IAM Would an electronic format; improve access? Improve usability? Promote self-management?

11 IAM ehna N TARGET IAM developed within the scope of the OnTarget project as a TYA specific ehna Website prototype developed in house Patients and professionals attended a co creation

12 Prototype development N TARGET

13 IAM Website requirements Mobile friendly website- built by SiteKit Patients able to complete in partnership or by themselves Team will have access scores if the patient sends the scores Provide a portal to further information and additional support online N TARGET

14 Initial wireframes N TARGET

15 IAM ehna N TARGET

16 N TARGET

17 N TARGET

18 N TARGET

19 IAM ehna N TARGET

20 N TARGET

21 IAM ehna Pilot N TARGET IAM is the basis of TYA holistic needs assessment discussed at the TYA MDaT Translated paper version into an electronic format Functionality to capture data service need and, potentially, the impact of interventions. The IAM has been launched for pilot evaluation with patients.

22 N TARGET Thank you

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