Guideline 76: Long term follow up care or survivors of childhood cancer

Long term follow up of survivors of childhood cancer
Section 7: Cognitive and psychosocial outcomes

7.1 Brain structure and neurological function

Observational studies and case series have highlighted the association between treatment for childhood cancers and structural abnormalities of the brain. Magnetic resonance imaging or computed tomography abnormalities have been shown in a variable proportion of cases after cranial irradiation but their significance in terms of function is difficult to assess. Disruption of frontal lobe/basal ganglia connections, temporal lobe calcification and cortical atrophy have also been reported.^{211,
212, 213,
214, 215,
216, 217,
218, 219,
220, 221,
222, 223,
224} Results suggest functional impairment may be associated with structural abnormalities of calcification and vasculopathy and electroencephalography (EEG) abnormalities.^{211,
218,
219,
220,
221} Cognitive impairment and structural abnormalities after treatment to the brain correlate with age and dose of radiation. There is not enough evidence to predict outcome in individual patients.

In looking for evidence about the effect of treatment on neurological function, no high quality trials could be identified. Most of the evidence is based upon case series with various assessment methods. There is little attempt to control for the duration of follow up or for the inclusion of a comparison group.

The available evidence does not support the view that a decline in cognitive function is a frequent or inevitable consequence of treatment for childhood cancer. Cranial irradiation is a risk factor for cognitive decline. Results are inconsistent but do indicate that total irradiation dosage, and younger age at diagnosis and treatment increase the risk for cognitive sequelae. Even when some effect is demonstrated, the effect size is small.^{225,
226, 227,
228, 229,
230, 231,
232, 233,
234, 235,
236, 237,
238, 239,
240, 241,
242, 243}

Healthcare and education professionals should be aware that the treatment of childhood cancer may have an impact on neurological function in later life, particularly if irradiation of the brain occurs at a young age.
Regular review of neurological function should be part of normal follow up.
If a problem is suspected, the patient should be referred to a psychologist for a cognitive assessment.

Children with cancer who are due to receive cranial irradiation should undergo a cognitive assessment with a standard measure (for instance an abbreviated version of the Wechsler Intelligence Scale for Children) at the start of treatment. The assessment should be repeated annually, to monitor changes over time.

7.2 Psychosocial issues

As childhood cancer survival rates improve, quality of life measures such as psychosocial adjustment become more important. The evidence for any effect of treatment on psychosocial function is derived from studies with a wide diversity of outcome measures that are not comparable. The outcome measures assessed range from formal psychiatric assessment measures to self-completed questionnaires through to sociodemographic variables such as marriage or employment. Many studies lack comparison groups. Variation in the duration of follow up is another confounding factor. Conclusions must be cautious, but adverse outcomes with respect to adjustment, employment and marriage are common findings.^{244,
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249, 250,
251, 252,
253, 254,
255, 256,
257, 258,
259, 260,
261, 262,
263, 264,
265, 266,
267, 268,
269, 270}

Evidence suggests that survivors are at an increased risk for a wide range of disabling psychological symptoms including low mood, anxiety, low self esteem and some symptoms of post-traumatic stress disorder.^{249,
250} Lower rates of marriage and employment than in the general population are also common.^{250,
254} Brain tumours and treatment with cranial irradiation are frequently reported risk factors for psychosocial dysfunction.^{249,
254}

Healthcare and education professionals should be aware that the treatment of childhood cancer may have an impact on educational and social function in later life.
Regular review for possible educational and psychosocial dysfunction or morbidity should take place.
If a problem is suspected, the patient should be referred appropriately.

7.3 Treatment interventions

There are no available studies assessing the effectiveness of intervention programmes for cognitive impairment or psychosocial dysfunction. Some descriptive studies have been published but these cannot be used to make specific recommendations.

One study described the benefits of providing more information about follow up and health care for survivors.²⁷¹ Another used cognitive, behavioural and family therapy to improve adjustment and symptoms of anxiety.²⁷² A third reported the benefits of a reunion workshop to provide support for psychosocial adjustment.²⁷³

The lack of evidence in this area should be an impetus for future research. Carefully designed prospective studies using standardised assessment measures are the best way to provide evidence about the efficacy of any intervention.