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Supporting children with cancer during transition to the teenage years

22 May 2025
Volume 34 · Issue 10
teenage patient with a healthcare provider

Abstract

Cancer in children and young people is still considered to be rare. However, in the UK, research has found that around 3755 children, teenagers and young adults under 25 years of age are diagnosed each year, comprising 1645 children (aged 0-14 years) and 2110 teenagers and young adults (TYAs) (aged 15-24 years) (National Disease Registration Service, 2021). This article will explore the clinical, emotional and systemic challenges that are faced by both the patient and healthcare providers when a child with cancer transitions into their teenage years.

Cancer in children and young people is still considered to be rare. However, in the UK, research has found that around 3755 children, teenagers and young adults under 25 years of age are diagnosed each year, comprising 1645 children (aged 0-14 years) and 2110 teenagers and young adults (TYAs) (aged 15-24 years) (National Disease Registration Service, 2021). This article will explore the clinical, emotional and systemic challenges that are faced by both the patient and healthcare providers when a child with cancer transitions into their teenage years.

Knowing that TYA cancer patients can develop a range of long-term side effects, there is an emphasis on the need for health professionals to develop and implement long-term personalised plans for these patients. In the UK, this was mentioned within the National Cancer Survivorship Initiative developed by the Department of Health et al (2013). This document advises completing a holistic needs assessment, including medical, psychological and financial assessments because of the increased recognition of TYA patients needing individualised care.

Medical changes

TYAs who have survived cancer are prone to developing late effects, the burden of which can be detrimental to quality of life. Ahmad et al (2016) conducted a literature review that found that, due to the age of children and teenage patients undergoing cancer treatments involving chemotherapy, late effects are more prevalent than in older patients. This may be because younger patients receive more intensive chemotherapy regimens and usually live longer, and thus have more time to develop late effects. These can range from secondary malignancies, cardiac toxicity and pulmonary complications to psychological difficulties (Ahmad et al, 2016). A review by Carr and Rosengarten (2021) found that poor treatment adherence within the teenage population has a correlation with increased risk of relapse, death and treatment-related side effects.

Denlinger et al (2014) noted that fatigue can often be a debilitating side effect in all patients with cancer, and that there has been minimal research into effective management strategies. It is reported that 17-29% of all cancer survivors are affected by fatigue, which can have a detrimental effect on quality of life (Ahmad et al, 2016). Short bursts of exercise may be more manageable in these patients, with structured exercise routines found to be helpful in reducing fatigue and decreasing anxiety (Denlinger et al, 2014).

Psychosocial effects

It is well documented that a cancer diagnosis at a key developmental stage and time in the lives of young people causes disruption for the TYA population, including long-term and short-term impacts on both physical and mental wellbeing (Avutu et al, 2022). Research has also indicated that adolescents with limited treatment adherence often experience higher rates of depression, lower self esteem and poorer parent–child relationships.

One study examining mental health among young individuals undergoing cancer treatment found that 90% reported experiencing anxiety, 83% reported feelings of loneliness, 70% experienced symptoms of depression, and 42% reported panic attacks (CLIC Sargent, 2017).

The Teenage Cancer Trust (2021) conducted a survey among young people with cancer. When asked to describe their mental health and wellbeing in the 6 months prior to the survey, 52% said it had been very poor (17%) or poor (35%).

Another study found a significant correlation between family dynamics and treatment adherence, suggesting that parental involvement plays a crucial role in adherence to treatment among TYAs (Kondryn et al, 2011).

Young people also emphasised the significance of psychological support received from health professionals who were not mental health specialists. When asked which member of their care team had provided the most mental health or psychological support since diagnosis, 31% named their clinical nurse specialist. However, other roles were frequently cited, with 23% identifying their psychologist and 17% naming their youth support co-ordinator as the primary source of such support. Notably, 15% of respondents indicated that they had not received any mental health or psychological support (Teenage Cancer Trust, 2021).

During treatment, patients and their families often focus primarily on managing daily challenges and achieving remission. However, a range of emotional and psychosocial concerns may emerge both during and following treatment, some of which can be long lasting. These concerns may include (American Cancer Society, 2024):

  • Adjusting to physical changes resulting from the disease or its treatment (such as alopecia, weight fluctuations, or surgical scarring)
  • Anxiety regarding disease recurrence or the onset of new health complications
  • Feelings of resentment or frustration related to the cancer diagnosis and the necessity of undergoing treatment
  • Increased dependence on caregivers, particularly during developmental stages typically associated with growing independence
  • Social concerns, including disclosure to others and potential experiences of stigma, altered treatment by peers, or discrimination in educational or occupational settings
  • Uncertainty regarding future interpersonal relationships, including dating, marriage, and family planning.

The role of a TYA cancer nurse specialist in providing psychosocial support is a critical component of holistic cancer care. These specialist nurses play a unique and multifaceted role in addressing the emotional, social and psychological needs of TYA patients (Teenage Cancer Trust, 2025).

Social issues

Adolescence is a critical period for social development, with healthy teens engaging in activities such as socialising with friends, attending school dances, and participating in extracurricular activities. These interactions are essential for forming peer relationships and establishing a sense of identity, as social integration and the desire to fit in are key aspects of growing up (Kaluarachchi et al, 2020).

In contrast, TYAs with cancer face significant disruptions to their social lives due to the demands of their illness and treatment. Extended hospitalisations, frequent medical appointments, and the physical side effects of treatment, such as fatigue, hair loss and weight changes, often limit their ability to participate in typical social activities. These changes can lead to feelings of self-consciousness and isolation, as affected teens may struggle to maintain connections with their peer groups (Kaluarachchi et al, 2020; Teenage Cancer Trust, 2025). Additionally, the visible signs of illness may result in differential treatment by classmates, further exacerbating their sense of social disconnection and altering their social experiences compared with those of their healthy peers (Warner et al, 2016).

A TYA environment

Access to a multidisciplinary team highly trained in working with this age group is just one area that demonstrates the benefits of receiving care in a TYA environment, as reported in research by Hughes et al (2023). This has the potential to improve the psychosocial development of these young people because being treated with others closer to their own age and in similar circumstances is important and is an area of concern that is frequently unmet.