The end of active cancer treatment doesn’t mean the stress of the disease disappears. In fact, this period of time can be quite stressful for adolescents and young adults coming off of active cancer treatment. However, these patients may not be getting the support they need to cope with life when treatment ends.
Researchers recently assessed what information and support adolescents and young adults coming off of active cancer treatment need. They interviewed healthcare professionals experienced in providing care for this patient population as well as adolescents and young adults themselves. Both cohorts participated in semistructured phone interviews, and some healthcare professionals also filled out an online survey. Adolescents and young adults aged between 16 and 29 years were recruited from four sites.
A total of 12 interviews were conducted with healthcare professionals including nurses (n=8), youth support coordinators (n=2), a medical doctor, and a psychologist; 49 healthcare professionals filled out an online survey. About two-thirds of survey participants were nurses (n=30; 61%) working in a specialist adolescent and young adult cancer service or in the specialist service as well as other adult cancer services (n=40; 82%). The majority of those who responded of the survey had more than three years of experience (n=39; 80%).
The healthcare professional interviews uncovered five themes, according to the researchers:
- The issues young people experienced at the end of treatment
- The mechanism by which these were identified
- The facilitators and challenges for identifying young people’s needs
- The existing sources of support and information available to young people
- The perceived changes that were needed to improve care for young people at the end of treatment
According to the survey results, most healthcare professionals believe that when patients receive posttreatment information and support will depend on the specific patient.
The young cohort included 11 people (eight were female) who took part in a phone or in-person interview. Patients were diagnosed with cancer at 17 to 25 years and had completed treatment either <6 months before the interview (n=7; 64%) or six months to one year before the interview (n=4; 36%). Diagnoses included carcinoma, leukemia, lymphoma, bone tumors, and germ cell tumors. Two patients had undergone a bone marrow transplant.
One challenge to obtaining support and information was that once treatment ended, the patients were now considered well. Another challenge was that some patients did not know who they should call for help. Additionally, some patients were hesitant to take the lead in asking for help.
Certain patient factors played a role, too. Patients with a shorter and less intense treatment duration reported not even having enough time to process the fact that they had cancer at all.
The study was published in BMC Cancer.
“We could further improve young people’s ability to adapt to life after treatment ends through structuring and standardising our approach to follow-up care, with a holistic focus that extends much further beyond the obvious physical concerns that young people present with during this transition. Importantly, this requires further work to establish a clearer alignment in relation to perceptions of end of treatment and transition,” the researchers concluded.