An Exploratory Study of Oncology Specialists' Understanding of the Preferences of Young People Living With Cancer

Abstract

Awareness about the specific needs of Adolescents and Young Adults (AYA) aged 15-25 with a diagnosis of cancer has grown rapidly over the past 10 years. To improve outcomes for these patients it is essential that services are developed within youth friendly models. This requires awareness by healthcare professionals of unique biological, genetic, epidemiological, psychological, social, and cultural factors that affect the AYA population. This study sought to explore oncology professionals understanding of the healthcare preferences of AYAs with cancer receiving treatment at a specialist cancer centre. Participants comprised 60 professionals in allied health (n = 15); nursing (n = 32); oncology (n = 6) and those from the Victorian AYA Cancer Service (n = 7). A questionnaire, developed from pilot work, collected demographic information, investigated professionals' top five perceived issues for AYAs, and examined perceptions in the areas of communication; information provision; environment; services; education, employment and social life, fertility and sexuality; support and survivorship. Results illustrate that, with a strong focus on survival and physical wellbeing, professionals significantly underestimate the breadth of AYA psychosocial concerns. The findings further indicate: that young people report different healthcare preferences compared to those reported by professionals; there are varying levels of professional skill, experience and confidence; there are significant workforce development and support needs for professionals; and AYA models of care require rigorous evaluation to ensure the improvement of outcomes for young people living with cancer.

The Impact of Advance Directives on End-of-Life Care for Adolescents and Young Adults Undergoing Hematopoietic Stem Cell Transplant

“…[9][10][11][12][13] Lack of such discussions can lead to undesired medical care, conflict between the medical team and families, and delay in the palliative care modalities aimed at reducing suffering. 14 Hematopoietic stem cell transplant (HSCT) is a potentially curative therapy among AYA patients with cancer and other nonmalignant diseases.…”

Communication preferences of pediatric cancer patients: talking about prognosis and their future life

“…Social concerns included the impact of cancer treatment on day-to-day life, feelings of isolation, a desire for normalcy (or for life to return to how it was prior to cancer), and the effects of their treatment on their appearance. These findings underscore the importance that adolescent patients place on "having a normal life," something providers often underestimate as they focus on curing the disease [28].…”

Fertility preservation and cancer

“…At the provider level, factors associated with reduced likelihood of fertility discussions include lack of knowledge and training, time constraints, insufficient resources, embarrassment, closeness in age to the patient, and issues being seen as irrelevant to the providers’ specialty or clinical practice (43, 46, 47, 50, 51). Patient characteristics including age, female gender, (provider perception of) low income and insurance coverage, disease type, poor prognosis or poor health status, treatment gonadotoxicity and perceived infertility risk, nulliparity, and religious and cultural factors have also been associated with lowered rates of fertility discussions (3, 43, 46, 47, 50, 51). Situational barriers include parents being present, lack of communication among treatment team members, and urgency to start treatment (43, 46, 47, 50, 51).…”

“…Patient characteristics including age, female gender, (provider perception of) low income and insurance coverage, disease type, poor prognosis or poor health status, treatment gonadotoxicity and perceived infertility risk, nulliparity, and religious and cultural factors have also been associated with lowered rates of fertility discussions (3, 43, 46, 47, 50, 51). Situational barriers include parents being present, lack of communication among treatment team members, and urgency to start treatment (43, 46, 47, 50, 51). …”