There is a paucity of information regarding the quality of care provided to adolescent and young adult (AYA) cancer patients in the current literature, according to a article in the Journal of Adolescent and Young Adult Oncology. There is a growing awareness of the importance of assessing the AYA patient’s perspective, which tends to be broader in scope and intensity than the needs of younger or older patients. Such information is necessary to inform guidelines for AYA cancer care.
Lead author of the article, Helen Bibby of the Centre for Behavioural Research in Cancer, Cancer Council Victoria in Melbourne, Australia pointed out that a cancer diagnosis thrusts AYAs into an oncology environment that is both unfamiliar and out of sync with their life stage. AYAs are usually treated in hospitals designed for treating either paediatric or adult cancer patients and have limited expertise with the AYA population.
The investigators conducted a literature search of Medline, PsycINFO, CINAHL, and EMBASE databases to identify relevant studies from 1990 to July 2015 to assess the current body of knowledge regarding the unmet needs and care experiences of AYAs with cancer in order to identify gaps in the research literature, and highlight potential areas where future research may be improved. Eligible articles included self-reported care experiences or unmet needs of cancer patients aged between 15 and 30 years in the period between symptom onset and 2 years post-treatment.
Studies on the needs of AYAs lack survey tools that are tailored to and validated in this age group
The analysis reviewed 45 articles from 39 studies, including 23 qualitative, 12 quantitative, and 4 mixed methods that the authors rated as ‘‘adequate’’ or ‘‘good’’ quality. No article contained a longitudinal description and just one quantitative study used a validated questionnaire, the adult Supportive Care Needs Survey-34 (SCNS-34), which examines the presence of unmet needs during the past month.
The majority of articles included any cancer diagnoses and both the age ranges of the subjects and time since diagnosis between studies varied considerably. Only articles regarding patients aged 15 to 30 were included in this audit which utilised either of 2 types of patient-reported measures: patient-reported outcome measures (PROMs), which focus on assessing dimensions of health-related quality of life, and patient-reported experience measures (PREMs), designed to determine whether patients’ care experiences meet their expectations and/or best practice recommendations.
Standardised survey tools that had been validated on adult populations were used in just 2 studies.
Fertility preservation and communication are important issues for AYAs
The most common areas examined were fertility issues in 14 studies, communication/information delivery in 13, staff skills/expertise in 11, age-appropriate treatment setting in 8, and peer contact or support in 8 of the reviewed 30 studies.
The majority of studies exploring fertility issues found that young people received insufficient information about the impact of treatment on fertility and about their preservation options. Of the 5 quantitative studies examining fertility experiences, all found that emotions impacted on decision-making in AYAs.
Two studies focused on sperm banking experiences and reported that fertility discussions were associated with distress and embarrassment; male patients were often embarrassed when offered the opportunity to sperm bank, and fertility discussions were deemed inappropriate in patients at the younger age range. Some AYAs found the sperm banking process straightforward, but other studies reported that sperm banking facilities were seen as inadequate, difficult to access, and insensitive. Although the presence of parents at sperm banking facilities was a source of embarrassment, two studies reported that young people wanted their parents to be involved in fertility discussions and decisions.
Women’s experiences of discussing fertility preservation and decisions were evaluated in 2 studies, which found that women were more likely to report distress regarding the lack of fertility preservation services.
Communication experiences were most often examined in qualitative studies and the most relevant issues included the importance of providing clear age-appropriate information about the disease, treatment, and implications for daily life, and the impact of uncertainty on patient well-being. The importance of communication delivery was emphasised, with listening skills, sensitivity, empathy, and trust regarded as key elements of information exchange. The studies examining staff skill/expertise focused on whether health-care providers had age-specific knowledge and experience.
A total of 16 studies examining peer support needs underscored that AYAs felt that meeting other young people with cancer was crucial; AYAs said peers provided emotional support, and were a source of information about treatment, and reduced feelings of isolation during the transition to follow-up care.
Eight articles derived from six studies found the place of care was important to AYAs who preferred treatment in an AYA-specific treatment cancer unit; patients treated in such a unit reported a very positive experience and said it provided mutual support, access to experts skilled in both cancer care and working with young people, and age-appropriate information.
According to the authors, findings in this analysis indicate that fertility information and services are a priority issue for AYA cancer patients and highlight the need for age-appropriate information and treatment facilities, access to emotional support services, and contact with peers.
A recurrent theme across the articles reviewed was the need for age-appropriate information through all stages of the cancer care journey was, and there was some evidence that this may be beneficial for emotional well-being. Also emphasised was the importance of tailoring information to the young person’s developmental stage and a need for treatment facilities to be age-appropriate.
Emotional support was another common theme in the articles comprising this review, with most AYAs expressing that this was best provided by contact with similarly aged cancer patients. The authors reiterated that their review suggests that AYAs need opportunities to interact with other young cancer patients, and to have access to age-appropriate psychosocial services when needed.
The authors advise that future research would benefit from a consistent definition of the AYA age range, increased used of standardised scales validated in this population, and studies with a longitudinal design to assess changes over time.
No external funding was disclosed.
Bibby H, White V, Thompson K, et al. What Are the Unmet Needs and Care Experiences of Adolescents and Young Adults with Cancer? A Systematic Review. Journal of Adolescent and Young Adult Oncology 2017;6(1):6-30.