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QOL

Psychological Distress

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Late Effects

Psychosocial

 

 

Psychological Distress

 

Most cancer patients and survivors experience some level of psychological distress following completion of cancer treatments. Distress is an unpleasant emotional, psychological, social, or spiritual experience that interferes with an individual’s ability to cope with various aspects of life. Cancer survivors may experience a range of feelings from normal sadness, fear and worry to deep depression, anxiety, panic, or isolation. These feelings can interfere with a person's ability to relate to family, friends, coworkers, and others during the normal routines of daily living.

Distress is generally assessed with measures of:

  • Anxiety
  • Depression
  • Somatization

Similar to QOL, the varied results in studies assessing distress among childhood cancer survivors is likely owing to diverse measures of distress (i.e., standardized measures versus interviews), the use of proxy measures, (i.e., parent or health care provider reports), and different comparison groups.  For example, structured and unstructured interviews show a higher variability in rates of clinically significant distress and find higher levels of distress in general compared to standardized questionnaires 13, 14

Although the majority of cancer survivors report few symptoms of psychological distress, distress is a significant issue for a subgroup of adult survivors of childhood cancers.

 

Factors that increase the risk a survivor will experience psychological distress 1-3, 8-11

Cancer type

CNS tumours

Neuroblastoma

Leukemia

Lymphoma

Bone tumours

Soft tissue sarcomas

Retinoblastoma

 

Cancer treatment

Irradiation - especially cranial irradiation

 

Chemotherapy - alkylating agents and anthracyclines

 

Surgery - among bone tumour survivors, amputees report less functional impairment and lower levels of anxiety and somatization compared to non-amputees

 

Rather than cancer treatment contributing directly to distress, distress appears to be associated with diminished social functioning, which may be related to cancer type or treatment

 

Sociodemographics 

Female sex

Lower educational attainment

Unmarried status

Annual household income below $20,000

Unemployment

Lack of health insurance

 

These are also risk factors for distress in the general population

 

Physical health

Poor physical health

Chronic health conditions (i.e., fatigue, sleep disorders, limited mobility)

 

These are also risk factors for distress in the general population

 

 

Many survivors, even those apparently doing well on psychological distress measures, may continue to have concerns about their physical health, body image, self-concept, access to life and health insurance, jobs and career options, and continued care from medical and complementary care providers.

 

Post-traumatic Stress Disorder

Research suggests 9% to 22% of adult survivors of childhood cancer have symptoms of post-traumatic stress 15-22.

 Symptoms of post-traumatic stress include:

  • Reexperiencing or intrusion of unwanted memories (i.e., nightmares or flashbacks)
  • Avoidance of reminders of the events (i.e., doctors or hospitals)
  • Numbing of emotional responses
  • Increased sympathetic arousal (i.e., a heightened startle response to sudden noise and constant monitoring of danger) 

In contrast to other psychosocial sequela, younger age at cancer diagnosis and treatment appears to be a protective factor against posttraumatic stress 23.

 

Suicidal Ideation

Post-pediatric cancer survivors, particularly CNS cancer survivors, are at increased risk for suicidal ideations.

Suicidal ideation is associated with 24:

  • CNS tumours
  • Depression
  • Poor health outcomes including chronic conditions, pain, and poor global health rating. 

 

Psychiatric Disease

Post-pediatric CNS cancer survivors are at increased risk for developing a psychiatric illness, including 25:

  • Psychoses of somatic, cerebral causes
  • Psychiatric disorders in somatic disease
  • Schizophrenia and related disorders 

 

Links:

COG Survivorship Guidelines: Emotional issues after childhood cancer

Post-traumatic Stress Disorder (NCI)

Facing Forward: Life After Cancer Treatment (NCI)

Depression (NCI)

 

 

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