9.1 Recommendations for research

This guideline systematically reviews the available literature and makes recommendations for the follow up of long term survivors of childhood cancer. The evidence base in this case is mainly composed of descriptive longitudinal studies. Rarely is there an appropriate control group available, so study populations are compared to population norms. Many studies report small groups of survivors from individual hospitals. The strength of these data lies in the meticulous attention to detail evidenced in reports from paediatric oncology centres. Many of the reported patients have been enrolled in national and international clinical trials. There remains a dearth of good interventional studies of therapies to prevent, treat or modify late effects in young survivors. Large multidisciplinary, national and international collaborative studies must be designed to improve the outcome for this large cohort of long term survivors. Provision of long term follow up clinics should be related to research into the long term effects of cancer and treatment.

Specifically, research is required in the following areas:

Growth:

• the safety of growth hormone treatment
• the indications for growth hormone therapy in adults with childhood onset growth hormone deficiency
• the multifactorial aetiology of obesity in children treated for childhood cancer.

Fertility:

• the benefit of fertility preservation for the prepubertal patient who will receive gonadotoxic treatment
• the mechanisms of chemotherapy induced ovarian damage
• the effectiveness of in vitro maturation of ovarian tissue
• the success rate of cryopreservation of prepubertal testicular tissue
• the role of physiological sex steroid replacement in the young woman with ovarian failure
• long term follow up and outcomes of treatment with assisted reproductive technology for those who have been treated for cancer in childhood
• long term follow up of children born to survivors of childhood cancer.

Dental growth:

• the impact of orofacial and dental growth problems on the quality of life
• the long term effects of treatment for childhood cancer on dental development.

Cardiac problems:

• the frequency of echocardiograms required to identify cardiac problems
• the cardioprotection afforded by ICRF-187 and how this can reduce the incidence of late cardiac complications in long term survivors of childhood cancer
• the effectiveness of liposomal anthracycline products
• the influence of scheduling/infusion of anthracyclines
• the effectiveness of ACE inhibitors in this patient group.

Cognitive impairment:

• the utility of standardised assessment measures
• the usefulness of regular follow up in detecting cognitive impairment due to treatment
• the efficacy of any interventions
• the impact of formal psychiatric illness, subsyndromal psychiatric illness, psychological problems and social disadvantage on the quality of life of survivors and their families.

9.2 Local implementation

Implementation of national clinical guidelines is the responsibility of local NHS organisations and is an essential part of clinical governance. It is acknowledged that not every guideline can be implemented immediately on publication, but mechanisms should be in place to ensure that the care provided is reviewed against the guideline recommendations and the reasons for any differences assessed and, where appropriate, addressed. These discussions should involve both clinical staff and management. Local arrangements may then be made to implement the national guideline in individual hospitals, units and practices, and to monitor compliance. This may be done by a variety of means including patient-specific reminders, continuing education and training, and clinical audit.

9.3 Key points for audit

Follow up outcomes should be audited carefully. As information accumulates, it will be increasingly possible to determine and deliver appropriate levels of surveillance in relation to clinical need so as to deliver high quality care in a targeted, effective and cost effective manner.

Key areas for audit are:

• regular height, weight, pubertal staging and body mass index measurements, recorded on appropriate charts
• appropriate follow up of patients at risk of late effects
• referral to specialists and treatment outcomes
• dental advice being given
• at-risk patients receiving appropriate cardiac monitoring
• annual thyroid function test being performed
• review for educational and psychosocial dysfunction or morbidity being undertaken.

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Last modified 16/09/11
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