Psychological Support: focus on professional and social

reintegration

Suzanne Kaal - medical oncologist

Radboud University Medical Center

Nijmegen, the Netherlands

Dutch AYA ‘Young & Cancer’ Platform

Caring

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24

18

10

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1 Managing

Supervising

Development

Cancer

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

Distress among AYA over time

n=215 AYA

(15-39 yrs)

Zebrack 2014 Psycho-Oncology

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

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

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

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

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

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

Nationaal AYA Platform www.aya4net.nl

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

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

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.

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

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

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!

Nationaal AYA Platform www.aya4net.nl

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

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

More winners!