Susanne Oksbjerg Dalton, Group Head, consultant, Danish Cancer Society Research Center, Danish Cancer Society, presentation at the Second International Scientific and Practical Conference «Improving the quality of life of cancer patients through the development of cooperation between state, commercial and non-profit organizations». 2018-01-23, Minsk. Belarus.

1. Research on consequences of cancer
and its treatment on quality of life,
symptoms and psychosocial issues
Susanne Oksbjerg Dalton, MD, PhD
Group Head, Senior Researcher
Survivorship, Danish Cancer Society Research Center

2. Outline of todays talk
• Danish Cancer Society Research Center & Unit of
Survivorship
• Why bother investigate life after cancer
• How can we shed light on the consequences of cancer
and its treatment – research in survivorship
• What do we still need to know - perspectives for future
research

3. Danish Cancer Society Research
Center

4. Mef Christina
Nilbert

5. Aims of the research in DCRC
• Identification of the causes of cancer
• Prevention of cancer
• Improve the treatment of cancer
• Increase survival after cancer
• The best possible life after cancer

6. Research in DCRC

7. Unit of Survivorship

8. Unit of Survivorship – organised in 3
research groups
Unit of
survivorship
Social Inequality
in Survivorship
Psychological
& Behavioral
aspects of
Survivorship
Childhood Cancer
Survivorship

9. Social inequality
Late effects
Who, when & why
Research themes
Death
Diagnosis
Recurrence
Late effects
Treatment
Return to
work
High-risk patients

10. QoL
How do we work
Population-based
registry studies
Population-
based
prospective
survivor
cohorts
Clinical
Intervention
studies

11. 11
People alive after a cancer diagnosis in Denmark
The population who are living after
cancer is increasing
6% of
Danish
population

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Tid siden diagnose
Many of these have lived for many
years since their diagnosis

13. Diagnosis &
Treatment Recovery
Early
monitoring
End of life
care
Progressive
illness
Later
monitoring
Cancer trajectory
Time since diagnosis

14. 14
Difference in prognosis and age-pattern reflected in proportion
of newly diagnosed and long-term survivors
Difference in prognosis and age pattern reflected
in proportion of newly diagnosed and long-term
survivors

15. 15
Alderspyramiden under forandring
Vaupel & Loichinger, Science 2006
Age-pyramid under rapid change

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The burden of cancer disease
“If recent trends in major
cancers are seen globally
in the future, the burden
of cancer will increase to
22 million new cases each
year by 2030. This
represents an increase of
75% compared with
2008.”
World Cancer Factsheet, International Agency for Research on Cancer (IARC) and Cancer Research UK, 2012

17. Historically 3 basic treatment principles
Surgery
Radiotherapy
Chemoterapy
Personalized (targeted) therapy
- Biological
- Immune therapy

18. Examples of physical & psychological long-term
consequences of cancer and its treatment
Anxiety & depression
Fear of relapse
Permanent hair loss
Cognitive problems
Oral and dental problems
Lymphedema
Bowel and urological problems
Neuropathy & pain
Changed body image
Cancer related fatigue
Sleep problems
Swallowing & digestion problems
Hormonal dysfunction & infertility
Sexual problems
Bone disordersNew cancer
Heart disease

19. More cancer patients + better survival
• More patients are cured
• Those who are not cured live longer
• More patients are treated with ‘risk’ treatments – more
lines, intense
More at risk for developing late effects after treatment
Change in focus (– also in research)
Not only a question of survival – but also about how you
survive:
• Choice between several treatments
• Patient and relatives involvement
• After care must be stratified based on risk?

20. EXAMPLE: Late symptoms among 3253 Danish
women 2-3 years after treatment for breast cancer
Pain:
Almost every second woman (47%) had pain 2-3 years after
surgery
6 out of 100 women had severe pain every day
Lymphedema:
13-65% of the women had lymphedema symptoms
More than 10% had debilitating lymphedema
Reduced functional level:
11-44% had to give up performing activities
>20% had work or sports activities affected
Gärtner et al

21. Who were at greatest risk?
Pain
• <40 years
• Removed lymph nodes in
axilla
• Radiotherapy
• Pain other places in body
(fx head ache, back pain)
Reduced function
• <40 years
• Removed lymph nodes in
axilla
• Radiotherapy
• Pain other places in body
(fx head ache, back pain)
• Chemoterapy
• Lymphedema
• Surgery on dominant side

22. Development and severity of late effects is
complex

23. Cancer patients are people who get cancer
People
• Age
• Gender
• Marital status
• Comorbidity
• Affiliation to work market
• Social network/support
• Health literacy/resources
• Biology/genes
Cancer
• Type of disease
• Stage
• Treatment
 Who gets a given late
effect is hard to predict

24. Hierarchy of scientific evidence

25. Hierarchy of scientific evidence in survivorship
- ‘softer’ outcomes – but methodological rigour!!
We work
here

26. Develop projects with patients and relatives
Use STROBE criteria!!!!
…Inclusion/Exclusion
A priori analytic strategy
Etc…
Include patient reported outcomes (PRO)
- Validated scales
- Careful piloting – ensure meaningfulness
Triangulate data – Biology, Objective vs Subjective
Observational research close to the
patients

27. Perspectives for future observational
research in cancer survivorship
• Prospective data – no more cross sectional studies?!
• Realtime PRO – potentially timely management of late
effects
• Who are the high risk patients – select patients for i.e.
proton treatment
• Biological mechanisms – explaining the how…

28. TIME OF DIAGNOSIS
Baseline
Questionnaire
(T0)
Baseline questionnaire (T0)
6 months follow-up
Questionnaire
(T1)
1 year follow-up
Questionnaire
(T2)
Socioeconomic factors
(Statistic Denmark)
Comorbidity
(The Danish Patient Register)
Clinical characteristics
(Medical records, clinical databases
and The Danish Pathology Register)
Analysis of blood samples
Subgroup of patients:
Clinical examinations
6 months follow-up
Questionnaire
(T1)
Use of rehabilitation services
(The Health Insurance Registry & The Danish General Practice Database)
Labour Market participation
(Danish Register for Evaluation of Marginalisation)
Temporal disease trajectories
(The Danish Patient Register & The
Danish Prescription Registry)
Study activities covered by this application
Supplemental study activities for which we will
apply for funding to later in the process
TREATMENT
1 year follow-up
Questionnaire
(T2)
2 year follow-up
Questionnaire
(T3)
5 year follow-up
Questionnaire
(T4)
SENECA – a prospective cohort of symptoms and
consequences of treatment for gynecological cancer

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A solution
Supportive care interventions within a health care
system with restricted resources:
• Patient/family centred
• Account for individual needs
• Recognise family and social circumstances
• Empower patients and families
AND
use minimal health resources
Intervention research in survivorship

30. 30
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1. Target clinical problem
Understand the nature of the
problem faced by the particular
clinical group:
• Cancer type
• Stage
• Point in illness trajectory
• Cultural context of patient &
family
Identify – and target the clinical problem

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2. Tailoring unique individual needs
Based on Fitch, Hospital Quart 2000 and Steginga, Psycho-oncology, 2001
All
Many
Some
Few
As the level of need and
complexity of the problem
increases the focus of the
intervention narrows and
the depth and intensity of
the intervention increases.
General
needs
Complex
needs
Tailoring unique individual needs

32. 32
4. Efficient delivery
Efficient delivery: method (phone, electronic; group based;
non-specialists e.g. GPs or volunteer peers)
Ensure standard delivery -> adherence to protocol ->
manualise
Confirm stakeholder acceptability – buy-in from
clinical wards, patients etc.
Other important aspects
Testing
Feedback
Design

33. The MyHealth Trial
Evaluate whether an individually tailored nurse-
led FU program using PROs and nurse-navigation
is superior to traditional oncologist-led FU.

34. Methods
Patient population
• 494 primary BC patients with stage I-II disease
• >40 years
• Treated at Næstved or Roskilde Hospital, Denmark
• All participants will follow the national mammography screening program.
• Randomization 1:1 to the intervention or control group
• Followed for 5 years.
• 18-months inclusion period at 55% participation
Primary outcome:
• BC-specific summary index (TOI-PFB) of physical and functional symptoms in
the Functional Assessment of Cancer Therapy –Breast (FACT-B) scale.
Secondary outcomes:
• Patient activation
• Anxiety and depression
• Economy
• Time to recurrence
• Well-being in the caregiver

35. Design

36. Patient education
• 3-5 appointments with
nurse
• Symptoms of
recurrence
• Self examination
• GSD Guidet Self
Determination

37. Nurses manage symptoms reported by
survivors - screenshot

38. Perspectives for future intervention studies
in cancer survivorship
• How to manage/treat late effects
• Prevent or minimize late effects
• How do we plan follow-up of patients

39. We know a lot – but not enough…
• Urgent need to map late effects, severity, trajectory
and identify high risk groups
• Most newly diagnosed cancer patients cannot be given
realistic predictions of the long-term risks associated
with their treatment
• How do we treat – or even prevent late effects
• With the aim to develop clinical guidelines and
stratified follow-up programs – to provide personalised
post-treatment care

40. Thank you!!
sanne@cancer.dk