Survivorship care plans - beneficial for the patients?
The ROGY Care Trial
Belle de Rooij
Introduction
245,000
350,000
0 50000 100000 150000 200000 250000 300000 350000 400000 450000
2009 2017
Men
310,000
420,000
0 50000 100000 150000 200000 250000 300000 350000 400000 450000
2009 2017
Women
45%
35%
‘How satisfied were you with the information provided?’
Endometrial cancer survivors N=742 (77% response)*
Not at all A little
Quite a bit Very much
*Nicolaije, Patient Educ Couns (2012)
Introduction
The American Institute of Medicine (2006):
“Upon discharge from cancer treatment, every patient should be given a record of all care received and important disease characteristics (…) and a follow-up care plan.”
• Cancer diagnosis
• Treatments received
• Potential consequences of the treatments
• Timing and content of follow-up
• Health promotion
• Employment and access to health insurance
• Psychosocial services
Health Counsel of the Netherlands (2007)
Survivorship Care plan
The ROGY Care Trial
What is the short- and long-term impact of SCPs on patient- reported outcomes for endometrial and ovarian cancer
survivors in daily clinical practice?
Primary outcomes:
Satisfaction with information Satisfaction with care
Secondary outcomes:
Illness perceptions
Health-related quality of life
Anxiety and depression
Pragmatic Cluster Randomized controlled trial*
6 hospitals
‘Usual care’
Endometrial cancer
Ovarian cancer
6 hospitals:
‘SCPs’
Endometrial cancer
Ovarian cancer
Questionnaires
After treatment
6 months 12 months 24 months
*Van de Poll-Franse, Trials (2011)
Survivorship care plan
1. Select ‘SCP’ button
1 2
2. Confirm diagnosis
3 3. Generate SCP
4
4. Print and provide SCP
Contact details care providers
Diagnostic information Treatment
summary Short term effects
of the treatments Long term effects
of the treatments Recommended
follow-up care
Additional help Distress thermometer
0 20 40 60 80 100 120 140 160
After treatment 6 months 12 months 24 months
Participatns
Endometrial
SCP care Usual Care
0 20 40 60 80 100 120 140 160
After treatment 6 months 12 months 24 months
Participants
Ovarian
SCP care Usual Care
75% 53%
50% 43%
70%
50% 41%
30%
Participation
Patient characteristics
ENDOMETRIAL OVARIAN
SCP Care
(N=119) Usual Care
(N=102) SCP Care
(N=61) Usual care (N=114)
Age 67.1 67.7 63.6 64.3
Socio-economic status High
Medium Low
19%
42%
39%
26%
40%
34%
21%
36%
34%
18%
52%
44%
FIGO Stage I
II IIIIV
86%
4%
7%3%
87%
2%
7%4%
34%
11%
38%16%
28%
8%
46%18%
Chemotherapy
Radiotherapy 5%
37% 12%
37% 72% 82%
Comorbidities >1 56% 62% 62% 68%
Recurrence 14% 10% 36% 39%
Progressive disease 3% 3% 16% 13%
Months from diagnosis 2,2 1,5 3,0 2,3
‘Did you receive a survivorship care plan?’
Endometrial Ovarian
SCP Care
(N= 119) Usual Care
(N= 102) SCP care
(N=61) Usual care (N=113)
Yes 74% 39% 66% 18%
No 26% 61% 34% 82%
Intention to treat analyses
? ?
Prior findings from the ROGY Care Trial*
Impact of SCPs in endometrial cancer survivors:
• No improved satisfaction with information provision and care
• More threatening illness perceptions (worry, emotional impact of the
disease, symptoms experienced)
• More cancer-related conctact with primary care physician
*Nicolaije, J Clin Oncol (2015)
Aim 1
To assess the impact of SCPs on satisfaction with information and care, and illness perceptions among ovarian cancer
patients
Methods
• Questionnaires
• EORTC INFO25
• EORTC adapted IN-PATSAT32
• Brief illness perception Questionnaire (B-IPQ)
• Health care use
• Multilevel linear regression analysis
• Random intercept on patient-level
• No random intercept on hospital-level
• No random slopes
• Covariates: age, socio-economic status, partner, employment status, cancer stage, treatments, comorbidity, time since diagnosis
de Rooij, Gyn Oncol (2017)
Satisfaction with information provision (INFO25)
0 10 20 30 40 50 60 70 80 90 100
Disease
Medical tests
Treatment
Other services
Places to go
Things to do
Satisfaction
Helpfullness
Satisfaction
SCP care Usual care
de Rooij, Gyn Oncol (2017)
Intention to treat, ovarian cancer (N=174)
Satisfaction with care (IN-PATSAT32)
0 10 20 30 40 50 60 70 80 90 100
Doctor interpersonal
skills
Nurse interpersonal
skills
Exchange information
caregivers
General satisfaction with
care
Satisfaction
SCP care Usual care
de Rooij, Gyn Oncol (2017)
Intention to treat, ovarian cancer (N=174)
Illness perceptions (B-IPQ)
1 2 3 4 5 6 7 8 9 10
Impact on life
Duration of illness
Illness control
Treatment control*
Symptoms
Concern
Understanding illness
Emotional impact
SCP care Usual care
*P<0.01; r=0.2
de Rooij, Gyn Oncol (2017)
Intention to treat, ovarian cancer (N=174)
How much do you think the treatment helps to cure the disease?
P<0.01; r=0.2
How muchtrust (1-10)
1 2 3 4 5 6 7 8 9 10
After
treatment 6 months 12 monts 18 months 24 months
SCP care Usual care
de Rooij, Gyn Oncol (2017)
Intention to treat, ovarian cancer (N=174)
Conclusions 1
SCPs did not increase satisfaction with information provision and care among ovarian cancer patients
SCPs led to decreased trust in the treatment
Results are in line with earlier findings in endometrial cancer patients
Are increased illness perceptions harmful or beneficial?
Aim 2
To assess the indirect effects of SCPs on quality of life, anxiety and depression through illness perceptions
Illness perceptions Survivorship Care
Plan
+ ?
after treatment 6, 12 or 24 months after treatment
Health- related quality of life
Anxiety &
depression
Methods
Questionnaires:
• Brief Illness perception questionnaire (B-IPQ)
• EORTC QLQ-C30
• Hospital Anxiety and Depression Scale (HADS) Structural equation models
• Linear equation systems
• Outcome scales are latent variables defined by the items of that scale
• Adjusted for covariates age, socio-economic status, partner, employment status, cancer stage, treatments, comorbidity, time since diagnosis
de Rooij, Qual Life Res (2018)
Results – structural equation model
Concern
Social functioning
Survivorship Care
Plan Fatigue
Pain
0.25**
-0.82**
0.84**
0.86**
after treatment 12 months after treatment
Endometrial cancer (N=141)
*P<0.05
**P<0.01
de Rooij, Qual Life Res (2018)
Low treatment trust
Survivorship Care Plan
Emotional functioning
after treatment 6 months after treatment
0.27* -0.66**
Ovarian cancer (N=114)
Results – structural equation model
*P<0.05
**P<0.01
de Rooij, Qual Life Res (2018)
Conclusions 2
• Patients who experience more threatening illness perceptions due to an SCP had worse long-term quality of life and more anxiety
• We should be aware of the potential negative consequences of SCPs in some patients
• Who is prone to experiencing increased illness perceptions due to the
SCP?
Aim 3
To assess the moderating impact of information coping style on the effectiveness of SCPs
Information-seeking coping style (‘Monitoring’) V.S.
Information-avoiding coping style (‘Blunting’)
Miller, J Personality & Social Psychol (1987)
Methods
Questionnaires
• Threatening Medical Situations Inventory (TMSI)
• EORTC INFO25
• EORTC adapted IN-PATSAT32
• Brief Illness perceptions questionnaire (B-IPQ) Multilevel linear regression analysis
• Interaction term of information coping style*outcome variable
• If there is an interaction effect, analyses are stratified by information coping style
• Adjusted for age, socio-economic status, partner, employment status, cancer type, cancer stage, treatments, comorbidity, time since diagnosis
• Ovarian and endometrial cancer in the same analysis
de Rooij, Cancer (2018)
Monitors - SCP Care Monitors - Usual Care
0 10 20 30 40 50 60 70 80 90 100
Diagnosis 6 months 12 months 24 months
General satisfaction with care
*
de Rooij, Cancer (2018)
0 10 20 30 40 50 60 70 80 90 100
Diagnosis 6 months 12 months 24 months
Satisfactioninformation provision
Blunters - SCP care Blunters - Usual Care
Satisfaction by information coping style
*
*P<0.05
1 2 3 4 5 6 7 8 9 10
Diagnosis 6 months 12 months 24 months
How muchillnessaffectslife
*
de Rooij, Cancer (2018)
1 2 3 4 5 6 7 8 9 10
Diagnosis 6 months 12 months 24 months
How concernedaboutillness
Monitors - SCP Care Monitors - Usual Care Blunters - SCP care Blunters - Usual Care
Illness perceptions by information coping style
*
Conclusions 3
• Patients with an information-seeking coping style (‘monitors’) do benefit from SCPs
• Patients with an information-avoiding coping style (‘blunters’) may be harmed by SCPs
• There’s a need for more personalised delivery of SCPs
Discussion
• Our SCP was extensive and included information on risk of recurrence, while relatively little counseling was provided
• Possibly, extensive SCPs are beneficial for information-seekers, while concise SCPs may be sufficient for information-avoiders
• One-size-fits all approaches are unlikely to be successful
• We need to ask patients about their information needs!
Acknowledgements
Netherlands Comprehensive Cancer Organisation (IKNL)
Lonneke van de Poll-Franse, PhD Nicole Ezendam, PhD
St. Elisabeth/Tweesteden Hospital, Tilburg
Caroline Vos, MD
Johanna Pijnenborg, MD, PhD
Catharina Hospital, Eindhoven
Dorry Boll, MD, PhD
Maastricht University Medical Center
Roy Kruitwagen, MD, PhD
