Psychosocial interventions for adolescents and young adult cancer patients: A systematic review and meta-analysis
Introduction
According to the definition by the National Comprehensive Cancer Network® (NCCN), adolescents and young adult cancer patients (AYAs) are generally defined as individuals aged between 15 and 39 years at their initial cancer diagnosis [1]. Nevertheless, there are inconsistencies in defining the age range for AYAs [2]. The specified age range was chosen because of typical issues and needs relevant to this group. In contrast to younger and older cancer patients, AYAs are different in their biological, psychosocial and socio-behavioral characteristics [3]. The incidence of cancer in AYAs has increased in Europe as well as in the USA in past decades [4]. In Germany, each year 15,000 patients aged between 15 and 39 years are diagnosed with cancer. Those are approximately 3% of all people diagnosed with cancer each year in Germany [5]. Survival depends on the specific cancer type, which means that the survival rate can be lower than in younger or older cancer patients e.g. for non-Hodgkin lymphoma or acute lymphoblastic leukemia [6].
AYAs with cancer represent a unique population in medical as well as in psychosocial terms [7]. While survival rates for younger children and older adults (age >40 years) have increased because of the progress of oncological treatments, there have only been small improvements in treatment in the AYA-group in the last three decades [8].
Biomedical differences between AYAs and other cancer patients arise as a result of a wide variety of cancer sites. Some cancer sites like Hodgkin's lymphoma or testicular cancer occur most often in the AYA group [9]. Other cancer sites have higher incidence rates during older adulthood. In addition, the cancer incidence increases from one age cohort to the next and the distribution pattern of diagnoses (Fig. 1) changes continuously [10]. AYAs may tolerate more intensive therapies due to their decreased co-morbidity [1]. In turn, this could lead to several acute side-effects or long term consequences such as infertility, secondary malignancies or cardiac dysfunction [11].
AYAs are faced with specific psychosocial and socio-behavioral challenges. First of all, there are often several rapidly changing developmental issues ahead, such as education, career and planning a family. In addition, in adolescence challenges may include identity/sexual development problems, struggles for autonomy from parents and issues related to dealing with a “new” body image [12]. A cancer diagnosis often means disruption to daily life including school or work and isolation from peers and family [13]. Additionally, in this age-group individuals have to tackle developmental tasks such as identity formation and career and family planning, all of which demand integration into normal life. Hence, coping with these developmental tasks alongside the experience of a cancer diagnosis and treatment, requires good support, sufficient coping strategies and increased sensitivity from others. A majority of AYAs become more dependent on their parents again because of increased care and financial needs [14], despite the growing desire to be autonomous [3]. Table 1 illustrates specific medical and psychosocial characteristics of AYA cancer patients.
While most psycho-oncological studies of childhood cancer survivors or children and older adults with cancer focus on treatment, survival and interventions, few studies exist in the field of AYAs dealing with their specific needs and most prominent symptoms of this age-group [15], [16], [17].
Erickson [15], [18] and Daniel [19] reported low physical activity including fatigue, nausea, pain and sleep disturbance as being the most common physical side-effects for AYAs. Furthermore, AYAs report a lower quality of life in comparison to their healthy peers [20] and have a higher risk of developing post-traumatic stress symptoms [21].
Yanez [16] showed in a study with 322 young adult (mean age 31.8) that cancer survivors had a higher level of cancer-related distress. This distress was higher 13–24 months after treatment completion in comparison to the 25–60 months cohort (p < .01). Kwak [17] examined changes of distress over time in a study with 215 young adults between 14 and 39 years (mean age 23.6). He found higher levels of anxiety in AYAs at diagnosis, which increased further between 6 and 12 months post treatment (means anxiety scores of the Brief Symptom Inventory at baseline: 52.7, 6-months follow-up: 49.8 and 12-months follow-up: 51.5).
Additionally, AYAs have reported specific unmet needs during treatment and in the transition into survivorship. Those most cited are psychosocial and information needs such as support from family and friends, psychological counseling, receiving age-appropriate information from services and Internet sites and meeting peers and cancer survivors [22]. The wishes of AYAs vary, including wanting sexuality interventions [23], [24], cancer-related websites with peer interaction, games and information [25] and preparation for “life after disease” [26]. Younger survivors (18–40 years) have a greater desire for cancer-related information, information about the health system and sexuality issues [27]. The majority of the older AYAs (age >25 years up to 39 years) want to have children after overcoming their disease, so information about fertility and fertility preservation methods is getting into the focus [28].
Previous explanations have emphasized the unique position of AYAs with their specific challenges, life goals and requirements distinguishing them from younger or older cancer patients. A comprehensive overview about interventions that are specifically designed for AYA to improve short and long-term psychosocial well-being (which includes several psychological and social self-report parameters) is still lacking. Therefore, the present study aims to systematically identify interventions from this field.
The research questions are as follows:
- (a)
Interventions
Which AYA-specific intervention studies were conducted in the last decade?
- (b)
Outcome/Effects
Which outcomes representing psychosocial issues were measured? Which effects were reported?
- (c)
Need for improvement
Which suggestions for improvement or modification of the interventions were made?
Section snippets
Inclusion criteria
At the beginning of our systematic review process we formulated a protocol in accordance with the PICOS approach [29]. Consideration was given to studies that fulfilled the criteria in Table 2. The exclusion criteria were also reported in Table 2.
The review was registered at “PROSPERO International prospective register of systematic reviews” (CRD42014007541).
Search strategy
A systematic computer-based literature search was conducted in relevant databases on the basis of the PRISMA-Statement [30]. Databases
Study selection
In total, 5084 records were identified through database searches and a further 31 articles through hand searching already existing reviews, related articles and clinical trials databases. After removal of duplicates, 3419 abstracts were screened on the basis of title and abstract using the above mentioned inclusion criteria. 214 full-text articles were assessed for eligibility. 202 publications did not meet the inclusion criteria and were excluded due to the reasons displayed in Fig. 3. Most of
Discussion
AYAs are individuals who suffer from particularly high levels of distress during the different stages of their cancer (diagnosis, treatment and survivorship). Therefore, efforts are needed to develop interventions covering the specific needs of this age-group. A systematic review was undertaken in order to identify interventions for AYAs to improve their psychosocial wellbeing. To our knowledge, this is the first systematic review and meta-analysis to date examining the effects of psychosocial
Conclusion
The present systematic review and meta-analysis strengthens the need for age-appropriate interventions in the field of psycho-oncology. However, due to the limited number of available studies, caution is needed when interpreting the effects. But trends can be distinguished: psycho-educational interventions and the use of multimedia are suited for adolescent and young cancer patients. The included studies may be considered suitable as “start-up” studies for AYA-related topics. Future
Authors’ contribution
DR conducted the literature search and wrote the paper. MK devised the protocol and made a decision on study inclusion and data extraction together with DR. MF and DR conducted the meta-analysis. GW and DR investigated risk of bias of the included studies. GW, IH and AM were advisors in the review. All authors provided comments and approved the final manuscript.
Conflict of interest
The authors declare no conflict of interest or competing financial interests.
Reviewers
Elisabeth Andritsch, Clinical Division of Oncology, Medical University of Graz, Auenbruggerplatz 15, AT-8036 Graz, Austria.
Acknowledgements
This study received no specific grant from any funding agency.
We would like to thank Christiane Hofmann for instructions for the literature search, Catherine Shneerson for the English language edit and also Dr. Jochen Ernst for his comments on the manuscript.
Diana Richter, M.A., is a social scientist and research fellow at the Department of Medical Psychology & Medical Sociology, University of Leipzig (Germany). Her main field of scientific interest is the life situation of chronically ill adolescents and young adults with the focus on quality of life, family planning and psycho-social interventions. She is a member of the workgroup “Psycho-Oncology” of the German Cancer Society (DKG). Since 2014 she has been in training as a child and youth
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Diana Richter, M.A., is a social scientist and research fellow at the Department of Medical Psychology & Medical Sociology, University of Leipzig (Germany). Her main field of scientific interest is the life situation of chronically ill adolescents and young adults with the focus on quality of life, family planning and psycho-social interventions. She is a member of the workgroup “Psycho-Oncology” of the German Cancer Society (DKG). Since 2014 she has been in training as a child and youth psychotherapist.
Gregor Weißflog, PhD, is a psychologist and research fellow at the Department of Medical Psychology & Medical Sociology, University of Leipzig (Germany). He is head of the working group “Interventions in Psycho-Social Oncology”. His main fields of scientific interest are coping with cancer, psycho-social interventions in cancer patients including psychotherapeutic processes. Beyond this, he is engaged in the investigation of long-term mental and physical health consequences after political persecution.