Changing Prospects: eHealth to improve supportive care for cancer patients.

1. Changing Prospects: eHealth to improve supportive care for cancer patients. Irma Verdonck-de Leeuw and Nelly van Uden-Kraan VU University, Clinical Psychology VU University Medical Center, Otolaryngology / Head & Neck Surgery

2. Cancer: incidence and prevalence Incidence: almost 100.000 new cases per year age: 70 % older than 60 years 20 % between 45 and 60 years 9 % younger than 45 years 1 % younger than 15 years Survival: about 60%, dependent on type and stage of disease Prevalence: 650.000 patients living with cancer (estimation) iknl.nl

3. Current focus on cancer survivorship • Increase in the number of cancer survivors Earlier diagnosis, Improved therapies • Greater emphasis on quantity AND quantity of life • Cancer is seen as a chronic disease at least for some types of cancer as breast, prostate cancer in an early stage • Burden on health care delivery systems » Innovation of our care delivery models in general » Focus on cost in relation to quality of care

4. Diagnosis Treatment Recovery and adjustment Early monitoring Long term monitoring illness End of life care Cancer Care Pathways

5. Cancer Care Pathways: examples Head and Neck Colo- rectal Breast Prostate Melanoma Lung …..and more

6. OncoKompas Head and Neck    Colo- rectal Breast  Prostate  Melanoma Lung …..and more

7. Head Matters: Guided self-help exercises during radiotherapy to prevent speech and swallowing problems Ingrid Cnossen

8. Selfmanagement portal for larygectomized patients

9. Stepped care targeting anxiety and depression Stap 1: Stap 2: Stap 3: Stap 4: Watchful waiting Zelf-hulp Gesprekstherapie Psycholoog en/of Internet / boekje verpleegkundige antidepressiva Voorbeeld van aantal patienten in: 100 70 35 15 (hersteld) uit: 30 35 20 Week 0 2 7 12 Anne-Marie Krebber

10. Head Lines: Guided self-help targeting anxiety and depression

11. Screening / monitoring quality of life in clinical practice

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13. Participatory design approach Development cycle Studies

14. Development cycle OncoKompas  • Step 1: Qualitative needs assessment patients (N=30) • Step 2: Qualitative needs assessment multidisciplinary oncology team (N=11) • OncoKompas prototype (OncoKompas 0.1) • Step 4: Usability study among HNC patients (N=18) • Step 5: Cognitive walkthrough care professionals (N=21) • OncoKompas 1.0 • Step 6: Feasibility study among HNC patients (N=61)    

18. tumor specific ENT diarrhea speech constipation swallowing nausea or vomiting mouth functioning lack of appetite shoulder functioning loss of taste or smell lymphoma hearing dyspnea

27. Feasibility study (1) Aim multi-centre pilot study • To assess feasibility of OncoKompas in clinical practice in patients with head and neck cancer Study design • Baseline measurement • OncoKompas is made ​​available to patients at the VUmc, LUMC and Maastricht UMC • Quantitative (satisfaction) survey Participants (N=61) • 36 men and 25 women • Average age: 58 years (24-73 years)

28. Feasibility study (2) Mean OncoKompas score: 7 (1-10 scale) Positivefindings • 75% would recommend OncoKompas to fellow patients • 80% could easily find relevant information in OncoKompas • >60% satisfied with the supportive care options offered Considerations • 35% indicated that certain questions were difficult to answer • 31% felt that going through the OncoKompas took too much time • OncoKompas should be made available on a tablet

29. Optimizing OncoKompas Upcoming studies • Up-dating OncoKompas • Adding tumor specific modules • Development of new functionalities (e.g. zip code specification)

30. Questions Contact information www.oncokompas.nl Nelly van Uden cf.vanuden@vumc.nl