Cancer Management

Teens and Young Adults (TYA) Taking Charge - Managing Cancer HRQoL Online Trial

Principle Investigators:

Professor Muthanna Samara
Prof. Hisham Morsi

Postdoctoral Research Fellows:
Dr. Aiman El Asam
Dr. Maha Othman

Funding Organisation:
Qatar National Research Fund

Start-Finish date:
September 2013 - September 2020

What is the Purpose of the Study?

Cancer in young people is an important global public health issue. Cancer is the second biggest killer across all age groups1 and the leading cause of disease related death for children from late infancy through to early adulthood i.e. between the ages of 1 and 18 years 2. The International Classification of Diseases for Oncology (ICD-O) divides childhood cancer to 12 major groups: lymphomas, leukaemia, sympathetic nervous system tumours, brain and spinal tumours, kidney tumours, liver tumours, epithelial tumours, soft-tissue sarcomas, retinoblastoma, bone tumours, gonadal and germ-cell tumours, and other unspecified malignant neoplasm’3. Self-management which is defined as “The individual’s ability to manage the symptoms, treatment, physical and psychological consequences and lifestyle changes inherent in living with a chronic illness”4, is effective in adults oncology 5-6.

To our knowledge and despite of adolescents desire to use age-appropriate internet sites for their cancer information and supportive care, only a single internet program has been developed to help newly diagnosed adolescents (10-16 years) with cancer to cope with their illness and its management7. The virtual platform contains information about malignancies, treatments, and suffered feelings, dealing with friends, schooling, coping schemes, and advice from other peers with cancer. However, its effectiveness has not been evaluated (in relation to improved knowledge and embracing healthy coping strategies).

In Qatar specifically, there are no self-management interventions for cancer patients at all. Also, with emerging interactive and communication technologies and the Internet the delivery of these self-management programs could be made available and easy to deliver.

In Qatar over the last three years there have been 433 cases of cancer in patients aged between 2 and 25 years diagnosed at Hamad General Hospital (HGH) and the National Centre for Cancer Care and Research (NCCCR). Of these, 197 are early- or late-teens with the remainder being young adults. Typically treatment lasts for 2-3 years and can be very hard going, requiring many hospital visits, withdrawal from school and other social activities. As has been mentioned, this may be particularly troubling for adolescents.

What is more troubling is that due to the division of populations undergoing treatment, all children aged above 14 are treated as adults whereas children below 14 are cared for by specially trained paediatric oncologists. This means that there is no specialized care provision specifically for teenage and young adult cancer sufferers in Qatar, raising the concerns that this group is particularly vulnerable to not having their needs met and their QoL further degraded as a result. Given the possible additional problems this group faces, it is imperative that this age group is given special attention that addresses the needs of teenagers and young adults.

What are the short-term and long-term implications of Cancer on Quality of Life?

Being anxious is common at diagnosis of cancer, during and after its treatment phases 8-10. Palpitation, sweating uneasiness and restlessness are but some examples of the anxiety that can lead to apprehension, worry, poor concentration and psychosomatic disarrays11. Cancer also elicits significant pain for children and adolescents12. It is one of the most distressing symptoms that affect patients’ quality of life13, delays their recovery, generates distress to their families and causes long term morbidity14. Several areas could have an effect on children’s general wellbeing, which encompasses physical, psychological, cognitive, social, and economic domains15. Arslan et al. 16 used a cross-sectional approach to investigate the consequences of chemotherapies and their side effects on quality of life and found a significant impact on HRQoL of children across a range of domains; physical, social, school and emotional.

What is the aim of the present research?

In order to deal with cancer related challenges, promote normative youth development, increase treatment adherence, and escalate rates of successful transition to aftercare and/or adult health care services, we established a group to investigate the QoL and HRQoL for children, teenagers and young adult cancer patients (2-25y) in Qatar. Preliminary data reveals that children with cancer in Qatar show low HRQoL in several QoL domains.

In this study, our QoL group will collaborate with Hospital of SickKids in Canada to implement and evaluate the effectiveness of a self-management online intervention in raising the quality of life and decreasing the levels of anxiety and pain from the diagnosis stage until the end of treatment phases.

The aim of this program of research is to evaluate the “Children and Teens Taking Charge: Managing Cancer HRQoL Online Trial” Internet intervention that has been designed to help children and adolescents with cancer to develop self-management skills, enhance transition readiness, promote social support and improve their health-related quality of life (HRQoL) and decrease their anxiety and pain levels using a sequential phased approach.

What does the study hope to achieve?

This study will identify the factors that could influence the QoL of children and adolescents with cancer and the effectiveness of an online intervention (HRQoL). This will establish the first longitudinal study on the development of these important factors and their influence on QoL in Qatari cancer patients.

Furthermore, we hope to establish and provide accessible online intervention for cancer patients to help improve their Quality of Life.

Reference List

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2. Ward E, DeSantis C, Robbins A, Kohler B and Jemal A (2014). Childhood and adolescent cancer statistics. CA: A Cancer Journal for Clinicians 64: 83-103.

3. Stiller, C. A. (2004). Epidemiology and genetics of childhood cancer. Oncogene, 23, 6429–6444.

4. Barlow, D. H. (2002). Anxiety and its disorders. The nature and treatment of anxiety and panic. New York: Guilford press.

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8. Stark, D., Kiely, M., Smith, A., Velikova, G., House, A., & Selby, P. (2002). Anxiety disorders in cancer patients: Their nature, associations, and relation to quality of life. Journal of Clinical Oncology, 20 (14), 3137-3148.

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10. Landier, W., & Tse, A. M. (2010). Use of complementary and alternative medical interventions for the management of procedure-related pain, anxiety, and distress in pediatric oncology: An integrative review. Journal of Pediatric Nursing, 25, 566–579.

11. Stark, D. P. H., & House, A. (2000). Anxiety in cancer patients. British Journal of Cancer, 83 (10), 1261-1267.

12. Miser A.W., & Miser J.S. (1989). The treatment of cancer pain in children. Pediatr Clin North Am, 36, 979–99.

13. Mantyh PW. (2006). Cancer pain and its impact on diagnosis, survival and quality of life. Nature Review Neurosciences, 7(10), 797-809.

14. Coleman R. E. (2006). Clinical Features of Metastatic Bone Disease and Risk of Skeletal Morbidity. Clinical Cancer Research,12: 6243s-6249s.

15. Pollard, E. L., & Lee, P. (2003). Child well-being: A systematic review of the literature. Social Indicators Research, 61, 59-78.

16. Arslan, F. T., Basbakkal, Z., & Kantar, M. (2013). Quality of life and chemotherapy-related symptoms of Turkish cancer children undergoing chemotherapy. Asian Pacific J Cancer Prev, 14 (3), 1761-1768.