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
Cancer: incidence and prevalence
Incidence:
almost 100.000 new cases per year
age:
70 %
20 %
9%
1%
Survival:
disease
about 60%, dependent on type and stage of
older than 60 years
between 45 and 60 years
younger than 45 years
younger than 15 years
Prevalence: 650.000 patients living with cancer
(estimation)
iknl.nl
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
Cancer Care Pathways
Recovery
Diagnosis
Treatment
and
adjustment
Early
monitoring
Long term
monitoring
End
illness
of life
care
Cancer Care Pathways: examples
Head and
Neck
Colorectal
Breast
Prostate
Melanoma
Lung
…..and more
OncoKompas
Head and
Neck


Colorectal

Breast
Prostate

Melanoma
Lung
…..and more

Head Matters:
Guided self-help exercises during radiotherapy
to prevent speech and swallowing problems
Ingrid Cnossen
Selfmanagement portal for larygectomized patients
Stepped care
targeting anxiety and depression
Stap 1:
Watchful waiting
Voorbeeld van
aantal patienten
in: 100
(hersteld) uit:
Week
0
Stap 2:
Zelf-hulp
Internet / boekje
Stap 3:
Gesprekstherapie
verpleegkundige
70
30
35
35
2
Stap 4:
Psycholoog en/of
antidepressiva
15
20
7
12
Anne-Marie Krebber
Head Lines:
Guided self-help targeting anxiety and depression
Screening / monitoring quality of life in clinical practice
12
Participatory design approach
Development cycle
Effect
evaluation
Studies
Needs assessment among
patients and care providers
Designing
program
User performance and
satisfaction
Cognitive walkthrough by experts
Usability
testing
Feasibility study
(Cost)effectiveness
Implementation study
13
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)
14
15
17
tumor
specific
ENT
diarrhea
loss of taste
or smell
speech
constipation
lymphoma
swallowing
nausea
or
vomiting
hearing
mouth
functioning
lack of
appetite
dyspnea
shoulder
functioning
21
22
26
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)
27
Feasibility study (2)
Mean OncoKompas score: 7 (1-10 scale)
Positive findings
• 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
28
Optimizing OncoKompas
• Up-dating OncoKompas
• Adding tumor specific modules
• Development of new
functionalities (e.g. zip code
specification)
Upcoming studies
Needs assessment among
patients and care providers
User performance and
satisfaction
Cognitive walkthrough by experts
Feasibility study
(Cost)effectiveness
Implementation study
29
Questions
Contact information
www.oncokompas.nl
Nelly van Uden
cf.vanuden@vumc.nl