Monitoring Quality of Life in Child, Teenage & Young Adult (CTYA) Cancer Care
Authors: Perkins Jon , Al Saied A , Morsi Hisham , Clark Holly , Hassan Azza , Alemayehu Elias 
Published: July 2019

Cancer patient survival has steadily increased following treatment over the last 50 years. However, treatments like radiation or chemotherapy are damaging to human health and result in a wide range of negative side effects. Cranial radiation for example, causes an array of cognitive deficits such as verbal intelligence decline or slower processing speed.1 These types of problems can manifest for years post treatment and cause a range of social, physical and emotional difficulties. Traditional medical survival endpoints ignore these factors. Given this reality, and the increasing number of survivors, it is unsurprising that best practice in oncology has moved towards including the Quality of Life (QoL) monitoring of patients during and post treatment.2 The Qatar Government recognises this and in their Qatar National Cancer Strategy3 advise that ‘the goal of specialised care is achievement of the best quality of life for patients and their families with good symptom management during treatment and at end of life’.

Quality of life is defined as an “individuals’ perceptions of their position in life, in the context of the culture and value systems in which they live, and in relation to their goals, expectations, standards and concerns”.4

The impact of a cancer diagnosis extends to all those in a patients extended social network. This is especially true for children where cancer procedures produce a great deal of anxiety and distress, as well as pain and physical discomfort. One-third of children who undergo treatment will suffer from moderate or severe side effects.6 and several studies report that the QoL for children under treatment is poor.7,8 Normal psychological functioning can be disrupted and day-to-day living and development perturbed. Reduced motor functioning and autonomy, impaired emotional processing (anxiety, depression) and cognitive problems are common weeks or years after diagnosis. The developmental stages that young people go through make the effects of treatment especially problematic. For example, adolescence is a difficult time and results in a range of psychosocial issues even during normal development (e.g. high suicide rates). Adding a potentially life threating disease to this already complicated developmental stage is potentially of significance. Careful monitoring of the QoL of children, teenagers and young adults (CTYA) therefore, is essential. In doing so it is possible to understand the unique problems young people face with a view to intervention and improved survival.

Sixty CTYA constituting 25% of all CTYA oncology patients in Qatar, were given the PedsQL questionnaire (Varni 1998). PedsQL is given to patients and their parents and uses a 5-point Likert scale to ask about physical, emotional, social and school/work functioning. Means and SDs were calculated for each domain as well as psychosocial, physical and overall QoL. In some domains we found one third of patients had poor QoL or were at risk (e.g. 36% were suffering physically). Parents also underestimated their children's emotional well-being. We show how these findings informed the development of a number of interventions and in forming the QoL Clinic at Hamad, the first such dedicated clinic in the Gulf region.