Questionnaire Designed for Adolescent and Young Adults with Cancer Elicits Their Views on Treatment

Adolescents and young adult cancer patients have age-specific issues arising from their treatment

Adolescent and Young Adults (AYA) with cancer want to receive their cancer treatment in an environment tailored to their age group rather than in a centre designed either for paediatric or adult patients, according to an article in the Journal of Adolescent and Young Adult Oncology. This environment should include well trained staff knowledgeable about AYA issues, as well as the treatment they are receiving and the repercussions on their later lives.

Recently there has been a cultural shift from the practice of adult care-givers acting as proxies in representing the views of young people towards directly soliciting the views of AYA patients regarding their care and treatment. The current view is to involve the service user at the heart of the design of AYA services.

To this end, Lucy J.W. Jones, Leeds Teaching Hospital Trust, St. James’s Institute of Oncology, Leeds, UK and collaborators in the European Network for Cancer in Children and Adolescents (ENCCA) conducted an audit to gain the perspectives of AYAs across Europe regarding their care and research priorities for AYA services. The researchers used a questionnaire designed by AYA oncology specialists in the UK that was translated into 11 European languages and disseminated to AYAs across 25 European countries.

The analysis included data from 301 respondents; of these 65, 45, and 34 were from Romania, Italy, and France, the countries having greatest number of participants, respectively. The mean age of the respondents at the time of diagnosis was 16 years (range 2 to 24 years). The mean age was 22 (range 13 to 49) at the time of concluding treatment. The majority of respondents were treated for haematological malignancy or sarcoma, and nearly half had received chemotherapy. At the time of the survey, most of the respondents were in school or employed, and the majority lived with their parents.

Less than 10% of AYAs received treatment in an age-specific unit

Responses revealed that few AYAs underwent treatment in a facility designated to their age group; just 9% of the respondents experienced a ward solely for the use of AYAs. During treatment 62.5% of AYAs were housed in a children’s ward for some part of their treatment and 25.9% were in an adult ward. The percentage of participating AYAs treated in an adult ward increased as the age of diagnosis increased, with 12.2% of respondents aged 2 to 12 years, 17.1% aged 13 to 16 years, 32.4% aged 17 to 19 years, and 80.4% of cancer patients aged 20 to 24 years receiving treatment in centres designed for adult cancer patients.

This is in contrast to the respondents’ consensus that the optimum age for AYA care was 16 to 20 years, with a mean age of 19 designated as ‘‘too old’’ for a children’s ward and 18 years as ‘‘too young’’ for an adult ward.

Questionnaire uncovers the need for AYA-specific services

Two-thirds of the respondents agreed that AYA specific services were needed. The age of cancer diagnosis figured heavily on whether the individual was in favour of AYA-specific services, with patients in the 2 older age groups (17 to 19 and 20 to 24 years) most strongly in favour of AYA-specific services, compared to patients in the younger age ranges (p < 0.004).

The most important aspects of AYA cancer care raised by the respondents were access to psychological care, youth workers and physiotherapists, higher levels of staffing, and healthcare workers with an understanding of the needs of AYAs who could communicate effectively. Although the AYAs wanted qualified staff, they placed a higher premium on staff having personal and professional qualities, including being approachable, positive, and trustworthy plus an understanding of the needs of AYAs.

The key elements of AYA specific services included ‘‘staffing,” “equipment,’’ ‘‘treatment,’’ ‘‘environment,’’ and ‘‘activities.’’ The AYAs desired staff with higher levels of expertise, such as physiotherapists, and better access to psychological care. More concerns included the need for comfortable furniture, relaxation areas, outdoor spaces, as well as age-appropriate films, music, and games.

AYAs wanted information about their treatment and its implication for their future lives

The AYAs responding to the survey voiced a desire for those taking care of them to be well informed about their cancer and treatment, and to have this information conveyed to them in a language appropriate to their age. They also wanted caregivers to be knowledgeable about fertility and body image issues.

Future research, according to the responding AYAs, should include ‘‘monitoring after treatment,’’ ‘‘communication between professionals and young people,’’ ‘‘research about cancer,’’ ‘‘fertility preservation,’’ and ‘‘information on returning back to work or school.’’

Most AYAs were unaware of International Charter of Rights

Although AYAs agreed with the contents of the International Charter of Rights, which describes the basic rights of a patient undergoing treatment for cancer, the majority of them did not know it existed.

Conclusions

The authors concluded that collaboration between European AYAs and professionals in delivering this project was feasible, although it was noted that the International Charter of Rights needs to be more comprehensively disseminated if it is to have an impact in Europe.

They noted that findings from this study contribute to developing a healthcare culture that values the perspectives of AYAs as service users and provided insight into the issues that AYAs feel are important, which included aspects of their care, how AYA care can be improved, and suggestions for areas of future research. The researchers suggest that further research in AYA care may benefit from comparing the outcomes of this survey to North America and Australia.

Furthermore, since this survey relied upon questions derived from the experience of AYA professionals, it may be interesting to use established AYA-specific patient-reported outcome measures to investigate the experiences of this population.

Disclosure

Sponsorship by the European Union’s Seventh Framework Program for research, technological development, and demonstration was disclosed.

Reference

Jones LJW, Pini SA, Morgan SJ, et al. How Do Teenagers and Young Adults with Cancer Experience Their Care? A European Survey. Journal of Adolescent and Young Adult Oncology 2017;6(1):102-110.