Sue Morgan

The adolescent with cancer — at the edge of no-man's land

The cancer journey of the adolescent patient can be difficult and lonely. Provision of services to these patients should occur at the interface between paediatric and adult oncology, although for the individual, that interface can seem like a gap into which he or she may too readily fall. In the UK, the needs of adolescent patients have become more widely recognised in the past decade, but they continue to have a low priority on the national agenda. Recent guidelines on cancer referral made specific reference to childrens cancers, but none to cancer in adolescents. The need for dedicated services for these patients has been accepted, but the resources to meet this need have rarely been identified. We explore current and future patterns of care and service provision for adolescents with cancer in the UK.

‘Listening to Patients’: what is the value of age-appropriate care to teenagers and young adults with cancer?

Current healthcare policy increasingly recognises the importance of patient experience in determining care. The 2005 UK National Institute for Health and Clinical Excellence Improving Outcomes Guidance encompasses caring for young people with cancer in an age-appropriate model of care developing regional principal treatment centres for this purpose. When published this was based upon limited outcomes evidence, and only a small amount of teenage and young adult patient and parent opinion. We have systematically reviewed the literature between 1996 and 2008, examining how far the experiences of this patient group support or refute the current policy. The recent literature describes with increasing consistency that teenage and young adult cancer patients have specific care needs, and gain benefits from an age-appropriate environment of care, including peer group support, age-appropriate information, recreational and vocational support, and staff expert in both the cancer and care of their age group. Many patients are prepared to travel to receive such care, if services are not in place to deliver excellent shared care between principal treatment centres and services nearer home. Some of these needs are unmet in non-specialist units. There remains, however, a paucity of rigorous comparative studies quantifying the value of specialist cancer care for this patient group.

'Just in case': the fertility information needs of teenagers and young adults with cancer.

Understanding the reproductive and fertility concerns of teenagers and young adults with cancer (TYA) is one aspect of comprehensive age appropriate care. However, limited options for fertility preservation, coupled with vague policy recommendations, give rise to variations in information-sharing between health care professionals and TYAs, particularly as it involves sensitive discussions regarding the short- and long-term effects of cancer and treatments on fertility and reproduction. This paper presents findings from a wider evaluation at a specialist unit for TYAs with cancer. Forty people participated in semi-structured interviews, including 20 young people, parents and partners. Young people were between 2 months and 4 years from finishing treatment. Most young people received mixed levels of information on fertility and counselling before treatment. Diagnosis in the early teens meant how, and from whom, young people received information varied. Young women tended to receive incomplete information. The majority of young people were unaware of their fertility status after treatment had finished. Findings point to the inherent challenges that exist in ensuring young people aged between 13 and 25 years receive comprehensive information on their fertility and potential risk, as well as advice on how to determine their fertility status after treatment has finished.

Young adult cancer services in the UK: the journey to a national network.

The past decade has seen the development of a network of specialist teenage and young adult cancer centres across the UK. These provide expertise in treatment across the spectrum of malignancies that occur in young adults, supported by multi-disciplinary teams that are able to provide the psycho-social support so necessary for this age group, and in a hospital environment that encourages social interaction while delivering expert medical care. The development of teenage and young adult (TYA) cancer as a specialty gained establishment backing in 2005, through NICE guidance which mandated that all 16- to 24-year-olds should be referred to specialist TYA cancer centres. The foundation of this achievement was set by a handful of committed individuals and the Teenage Cancer Trust, a charity that has acted as patient advocate and political pressure group, and that has brought to public attention the need for change while providing support for specialist staff and hospitals.

Nursing young people with cancer: What is "different" about it?

Nursing Adolescents and Young Adults (AYA) with cancer is a relatively new specialty, with much work having been undertaken across Europe. As this evolving specialty develops, nurses are required to develop networks, learn from each other and help to shape services across countries. Describing the cancer journey, this paper looks at the literature and, merging it with over 20years of experience, describes what is different about looking after this group of young people. Looking at the specific issues about caring for AYA, including those issues that are pertinent in this age range: i.e. education/employment, fertility, body image, peers, family relationships, it discusses the development of specific services for this cohort of patients; one that is centred around the young person and their friends and families. Taking into account the need to develop multidisciplinary teams, it also highlights the needs of nurses who work in these teams, the education, skills and attributes needed to develop gold standard services for these challenging young people. The further development of nursing networks internationally is urged in order to share practice and expertise, nurture teams and bring the AYA with cancer into sharp focus.

A cross-sectional survey of healthcare professionals to determine what they believe constitutes 'specialist' care for teenage and young adult patients with cancer

Objectives To examine the attitudes of UK healthcare professionals towards what they believe constitutes specialist care for teenage and young adult (TYA) patients with cancer, to determine which factors they considered to be the most important components of specialist TYA care, and whether opinion varied between clinical specialties and reflected the drivers for care improvements within National Health Service (NHS) policy. Design and methods The study utilised a cross-sectional survey, using Likert scales, to assess attitudes towards specialist care. Responses were grouped using model-based clustering methods implemented in LatentGold 4.5. Setting Participants from 98 NHS trusts in the UK were invited to participate in the study. Participants 691 healthcare professionals involved in the management of TYA patients were approached; of these, 338 responded. Results 338 healthcare professionals responded (51.9% of those invited). Responses were grouped into three clusters according to the pattern of responses to the questions. One cluster rated age-appropriate care above all else, the second rated both age and site-appropriate care highly while the third assigned more importance to site-specific care. Overall, the psychosocial and supportive aspects of care were rated highest while statements relating to factors known to be important (access to clinical trials, treatment at a high volume centre and specialist diagnostics) were not rated as highly as expected. Conclusions Attitudes varied widely between professionals treating TYA patients with cancer as to what constitutes key aspects of specialist care. Further work is needed to quantify the extent to which this influences practice.

Multi-Professional Perspectives on Adolescent and Young Adult Oncology Across Europe: An e-Delphi Survey

The aims of this article are to describe the ongoing development of adolescent and young adult (AYA) cancer services within the European Union (EU), and to develop consensus on key areas within the field. This survey used an e-Delphi design. An initial survey was distributed via email to professionals working in Europe. A snowball sampling technique was used to promote distribution. Consensus was sought over three rounds from October 2012 to April 2015. Consensus was defined as >80% agreement (agree or strongly agree). Sixty professionals participated in round 1, 106 in round 2, and 61 in round 3. Twenty-six countries were represented across all rounds. Consensus was achieved for: the need for national policy guidance, the importance of patient choice, the validity of the International Charter of Rights for Young People, and some aspects of multi-disciplinary working. There was 75% agreement on a single definition of the patient age range within AYA cancer care. European professionals with expertise in AYA cancer care reached consensus on key elements of care for this group. The optimal AYA age range remained an elusive topic on which to agree. The broad engagement and interest in AYA cancer across the EU through the European Network for Cancer in Children and Adolescents (ENCCA) network was also demonstrated.

The Development of Adolescent and Young Adult Cancer Nursing: The UK Experience

Nursing adolescents and young adults (AYAs) with cancer is an emerging specialty and has been in development for about the last 25 years. AYAs have specific needs, with a different biology of disease as compared with adults and children, and they require specific services in order to help to improve their experience and survival chance. Nurses have been at the forefront of these developments, leading change at first locally and in more recent years across regions and countries.

Online information and support needs of young people with cancer: a participatory action research study

Purpose The Internet is a fully integrated part of young people’s life and it is pivotal that online resources are developed to maximize the potential of the Internet to support those living with and beyond cancer. We sought to understand how young people with a cancer diagnosis use the Internet and to what extent information and support needs are met by existing online resources. Patients and methods This was a participatory action research study involving 21 young people participating in workshops and individual interviews. Participants aged 13–24 years were diagnosed with a range of cancers. Young people were on treatment or had completed treatment; some had experienced relapse. Workshops consisted of participatory methods including focus group discussions, interactive activities, and individual thought, encompassing online resources used; when, how and what they were searching for, whether resources were helpful and how they could be improved. Results Young people reported using communication platforms, entertainment sites, social media, medical websites, charity websites, and search engines to find information and support. Different online use and needs were described throughout their cancer timeline and online use was generally driven by negative emotions. Seven factors influenced access and engagement: 1) where young people were on their cancer timeline; 2) external influencing factors, such as family and environments; 3) emotional drivers; 4) what young people search for online; 5) resources, websites, and digital platforms used by young people; 6) availability, accessibility, and assessment of online information and resources; 7) emotional responses to using online resources. Conclusion The way young people access and engage with online resources is complex with multiple influencing factors including powerful emotional drivers and responses to Internet searching. There is a need to develop resources that support the holistic needs of young people and this should be done in collaboration with young people.