Click to edit title - European Society for Medical …...Limited data in AYA cancer survivors -...
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Psychological Support: focus on professional and social
reintegration
Suzanne Kaal - medical oncologist
Radboud University Medical Center
Nijmegen, the Netherlands
Dutch AYA ‘Young & Cancer’ Platform
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Caring
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1 Managing
Supervising
Development
Cancer
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Psychological issues
• Cancer-related distress:
- Higher levels among AYA compared to older
cancer patient
- Components: worry about recurrence,
hypervigilance about symptoms, changes in self-
perception, body image, difficulty with
concentration and sleep, fatigue
• Lower levels of distress are associated with older
younger, previous life experiences and lower
treatment intensity
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Distress among AYA over time
n=215 AYA
(15-39 yrs)
Zebrack 2014 Psycho-Oncology
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Fear of cancer recurrence (FCR)
• “Sword of Damocles”
• Dutch study*: 69% of AYA cancer patients reported
fear of cancer recurrence
- Associated with lower levels of social and
psychological functioning
- Higher levels of anxiety and distress
• High levels FCR:
- More unscheduled doctors appointments
- Unwillingness to be discharged from follow-up
- Increased healthcare costs
*Thewes, Kaal 2017 Supp Care Cancer
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Depression and anxiety
• Limited data in AYA cancer survivors
- childhood cancer survivors (>10 yrs since
diagnosis) 15.8 % depression and 13.1 % anxiety*
• When compared with older survivors, depression is
more frequent in AYA survivors
• Reported associations between depression and AYA:
- female sex
- older age at diagnosis
- reproductive concerns*Huang 2013 JCO
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Post-traumatic stress disorder (PTSD)
• Higher risk in AYA cancer survivors (8-29%)
• AYA survivors are 4-5x more likely to report PTSD
compared to non-cancer peers
• Prevalence of PTSS persisted up to 12 months after
diagnosis
- with 44 percent having symptoms at 12 months *
• Risk factors for PTSS in AYA survivors include:
- female sex, poorer family functioning, presence of
late effects of treatment, unemployment, less social
support etc.
* Kwak 2013 Psycho-oncology
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Posttraumatic growth (PTG)/resilience
• Sense of personal growth or benefit that results from
one’s cancer experience
• Resilience: mediator in the relationship between
symptom distress and HRQoL
• PTG and resilience are associated with better
HRQoL and higher levels of satisfaction in life
Greup, Kaal 2017 JAYAO
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Psychological support
• Should be age-appropriate for all AYA cancer
patients, especially those at risk for psychological
distress
• Should be available from start of cancer diagnosis
and also after treatment
• Should be instrumental in reducing psychological
distress and promoting psychosocial adaptation
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Psychosocial services
• Informational support
- website, online community, AYA nurse,
physician
• Emotional support
- Peer support (“on life” and “online”, mental
health worker, family and friends)
• Practical support
- friends, family, social worker etc
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Nationaal AYA Platform www.aya4net.nl
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Education
• Interruption educational pathways
• Reduced attendance, missed coursework or exams
can impact future career opportunities
• Feelings of “left behind”
• Impact on self-esteem and forming social networks
• Shame, social isolation and avoidance coping
strategies
-> communication treating team and school
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Employment
• Employment difficulties are common:
- Frequent hospital appointments
- Reduced ability to function due to
physical/cognitive effects of cancer/treatment
• Reduced working hours or adjustment to goals ->
discrimination, job insecurity, fear for future earning
potential and career options
• No fixed labour contract
• Cancer on CV is not ‘appealing’
-> occupational therapist
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Relationships
• The process of exploring sexuality, considering
marriage and planning to have children, can be
significantly affected by a diagnosis of cancer
• Altered physical appearance due to weight changes,
alopecia and surgical scars can impact self-esteem
• Maturing relationships can also be disrupted by
feelings of loss of identity, emotional or cognitive
difficulties.
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Peer and family relationships
• Family dynamics can be affected:
- either enhancing closeness
- emotional barriers and dissociation
• AYA may become dependent upon parents for
emotional and financial support
• Overprotection hinders mature and independent
decision-making
• Protection of family, role as a parent and patient,
support and distance from friends, loneliness and
segregation
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Marital relationships
• AYA cancer survivors ars less likely to be married
and more commonly divorced
• New romantic relationships may be challenging:
- negative body image
- low self-confidence
- worries about fertility
• Decreased sexual functioning
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Psychosocial interventions
• Limited research
• Most interventions aim at improving cancer
knowledge, social support, coping skills
• Digital interventions
- online peer support groups
• Counseling interventions
• Interventions delivered after treatment may have
more success in improving psychosocial outcomes
than during treatment
-> multidisciplinary intervention!
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Nationaal AYA Platform www.aya4net.nl
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Palliative care in AYA
• One quarter dies of cancer
• End-of-life challenges
• Palliative care in AYA is different than in older
patients:
- Role of the AYA
- Role of the general practitioner
- Role of parents/family
- Role of hospital health care professionals
-> use palliative care services early in palliative phase
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Conclusion
• Psychological issues (distress, depression, fear
cancer recurrence) can play a role in survivors
• Psychological support should be available from
diagnosis and also after treatment
• Identifying patients who are in need is helpful in
tailoring age specific care
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