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Central nervous system tumours (CNST) account for around one quarter of all cancer diagnoses in children and are the second most common childhood malignancy.
Childhood CNSTs differ from those seen in adults in their incidence, histology and location. Children who are diagnosed with a CNST face many survivorship challenges, including problems with neurological function, epilepsy, vision, hearing, short stature, endocrinopathy (hormone problems), and psycho-social challenges.
Skilled neuro-rehabilitation often makes the difference between a child who grows into an independent adult and one who needs complex care. The importance of psychological support and care for this group has been highlighted in NICE guidance, yet remains a significant area of unmet need in many paediatric oncology services.
Royal Manchester Children’s Hospital (RMCH) is a UK Children’s Cancer and Leukaemia Group (CCLG)| treatment centre. Around 30 children are diagnosed with CNSTs and treated within the centre each year. The clinical psychology service within neuro-oncology was set up in July 2009 after Macmillan funded a full-time clinical psychologist.
This followed a successful partnership between Macmillan and Central Manchester University Hospitals Trust that delivered a pilot project of psychological interventions to children with CNSTs and their families.
As a Macmillan clinical psychologist at RMCH, I provide psychological and neuro-psychological assessment, support, expertise and interventions for all children and young people diagnosed with CNSTs and their families. The service provides psychological care to children and young people up to the age of 19, throughout the cancer pathway.
I work closely with the psychooncology multidisciplinary team (MDT) at RMCH. I also attend weekly MDT meetings, ward rounds and case reviews, and am involved with the ongoing teaching and training schedules arranged for RMCH and community nursing staff.
The details of the exact psychology intervention packages vary from one child to another depending on age, diagnosis and morbidity following treatment. The majority of families need help in one or a combination of the areas highlighted below.
Emotional support needs
- Concerns over changed appearance.
- Social anxiety and peer relationships.
- Health anxiety.
- Parental anxiety.
- Difficulty establishing independence.
- Low mood and self-esteem.
- Procedural anxiety.
Neuro-psychological assessment and return to school
- Baseline assessment of abilities post-treatment.
- Liaison with schools about actual or expected learning problems post-treatment.
- Involvement in special educational needs assessments and reviews.
- Understanding and dealing with treatment related behaviour problems, eg steroid induced.
- Helping parents put the rules back in place.
- Dealing with tantrums and tears.
- Dealing with rewards, bribes and presents.
The feedback we’ve had from members of the MDT, including consultant oncologists, has been very positive. It has highlighted the importance of education and advocacy for the children and families involved in the neuro-oncology service.
Feedback from patients as part of a service evaluation using the Commission for Health Improvement Experience of Service Questionnaire was also very positive. Examples of comments received include:
Future plans for the service include implementing some of the ideas given by secondary school children about group support, along with trials of goal-based evaluation methods for intervention. The service is committed to research and development and is pleased to welcome a trainee clinical psychologist into the team to conduct research on self-esteem in adolescent cancer.
1. Anderson D M, Rennie K M, Ziegler R S, Neglia J P, Robison, L R, & Gurney J G. Medical and neurocognitive late effects among survivors of childhood central nervous system tumors. Cancer. 2001. 92 (10); 2709– 2719.
2. NICE. Guidance on Cancer Services: Improving Outcomes in Children and Young People with Cancer: The Manual|. 2005. London: National Institute for Clinical Excellence.
3. Mitchell W, Clarke S & Sloper P. Survey of psychosocial support provided by UK paediatric oncology centres. Archives of
Disease in Childhood. 2005. 90 (8), 796–800.
4. Commission for Health Improvement. Experience of Service Questionnaire. 2002.
Macmillan has fact sheetsabout children’s cancers and information about brain tumours|.
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