Supporting children with central nervous system tumours

Summer 2011

Dr Louise Talbot, Macmillan Clinical Psychologist, talks about the psychological needs and specialist support offered to this group of children.

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.^[1]

 

Skilled neuro-rehabilitation often makes the difference between a child who grows into an independent adult and one who needs complex care.^[2] The importance of psychological support and care for this group has been highlighted in NICE guidance,^[2] yet remains a significant area of unmet need in many paediatric oncology services.^[3]

The neuro-oncology service

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.

Psychological intervention

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.

 

Behaviour problems

 

- 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.

Positive feedback

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[4] was also very positive. Examples of comments received include:

‘My child was able to talk freely about her concerns to someone impartial to the family and all advice given to her was dealt with individually. I also felt that the person I saw cared about my progress, and talked to me both as a patient and a person.' Parent of 17-year-old.

‘I felt that I was taken seriously and each problem that was raised was dealt with individually. I also felt that the person I saw cared about my progress, and talked to me both as a patient and a person.’ 17-year-old patient.

‘The counsellor was very friendly and approachable. She got on well with my daughter from the start and she looked forward to her visits.' Parent of 13-year-old. 

‘I feel like [the psychologist] really cared and step by step she helped me solve any problems I had.’ 13-year-old patient.

Going forward

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.

References

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.

More information

Email Louise|.

 

Macmillan has fact sheetsabout children’s cancers and information about brain tumours|.