Adolescents and young adults with cancer: How multidisciplinary health care teams adapt their practices to better meet their specific needs (original) (raw)
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A qualitative evaluation of an adolescent cancer unit
European journal of cancer care, 2004
The Expert Advisory Group on Cancer (1995) recommended that cancer centres in the UK should make provision for adolescents with cancer. However, although their number is growing, only a small number of specialist adolescent cancer units currently exist, and teenagers may often be treated in more general settings. To date, no formal evaluation of adolescent cancer units has taken place. This study adopted a qualitative approach to evaluate the first specialist adolescent oncology unit, which was established in the UK 10 years ago. The aim was to provide insight into: the culture of the unit; the experiences of patients and parents on the unit and the staff who worked there; and how the unit was valued by these groups. Semi-structured interviews were conducted with 10 teenagers with cancer, 10 parents and 14 professionals. Systematic nonparticipant observation of routine activities in the unit was undertaken also. Interview transcripts and observational data were analysed to identify key themes and categories. Six categories emerged from the data:
Psychosocial Care of Adolescent and Young Adult Patients With Cancer and Survivors
Journal of Clinical Oncology, 2012
The delivery of quality care for adolescent and young adult (AYA) patients with cancer and survivors requires an understanding of the unique qualities of this group—the shared norms, attitudes, and beliefs that determine their behavior as well as the unique stresses they face on a day-to-day basis. All AYAs have typical concerns about being comfortable with who they are and who they want to become (identity development, including sexual identity), their bodies (body image), initiating intimate and emotional relationships, separating from parents, and making independent decisions about future goals such as career, higher education, and/or family (autonomy). Yet efforts of AYA patients with cancer and survivors to mature are often confounded by restrictions and limitations placed on them by their disease and treatment. This article promotes understanding of psychosocial challenges faced by AYAs when diagnosed with and treated for cancer. It reviews evidence-based psychosocial support ...
Cancers, 2022
Adolescents and young adults (AYAs) require a multidisciplinary approach to cancer care due to their complex biopsychosocial situations and varied developmental maturity. Currently, age and diagnosis determine referral to pediatric or adult oncology, with differing treatment paradigms and service utilization patterns, contributing to suboptimal improvements in outcomes. Understanding the unique perspectives of AYAs is essential to designing patient-centered AYA services. Thus, we conducted six focus groups with AYAs (n = 25) treated by medical or pediatric oncologists to evaluate: (1) the unique experiences of cancer care as an AYA; (2) AYA-specific information needs and communication preferences; and (3) recommendations for service provision, delivery and accommodations for AYAs. Transcripts were analyzed using inductive thematic content analysis and identified six major themes to inform clinically-actionable recommendations and the development of a patient-reported outcome measure...
Adolescent and young adult patients with cancer: a milieu of unique features
Nature Reviews Clinical Oncology, 2015
Background: Adolescent and young adults with cancer (AYACs) face unique medical, psychosocial, and supportive care needs. The purpose of this study was to identify AYACs perceptions and expectations of cancer care services on and off treatment. Methods: Semistructured interviews were conducted with 23 AYACs aged 19-38 years (13 on and 10 off treatment), who were receiving care at a comprehensive cancer center. Verbatim transcripts were created from audiotaped interviews and hand coded using inductive content analysis methodology. Results: Perceptions of optimal care were reported by AYACs through two main themes as follows: perceived barriers and facilitators during treatment. Within each main theme were three subthemes, including perceived facilitators reported as the provision of social support, the website and patient portal, and the educational information provided by the cancer center. Younger female AYACs (age 19-31) on active treatment reported perceived barriers to optimal care related to the management of physical and mental health symptoms, while older patients (age 32 and up) on active treatment endorsed a fear of cancer returning. The third perceived barrier equally endorsed by patients both on and off treatment and across age ranges included limited assistance with financial issues. Conclusions: AYACs reported perceived barriers and facilitators to optimal care. Implications for these findings are discussed in the context of the importance of adding a patient navigator to the AYACs care team.
The oncologist, 2015
Cancer is the leading disease-related cause of death in adolescents and young adults (AYAs). This population faces many short- and long-term health and psychosocial consequences of cancer diagnosis and treatment, but many programs for cancer treatment, survivorship care, and psychosocial support do not focus on the specific needs of AYA cancer patients. Recognizing this health care disparity, the National Cancer Policy Forum of the Institute of Medicine convened a public workshop to examine the needs of AYA patients with cancer. Workshop participants identified many gaps and challenges in the care of AYA cancer patients and discussed potential strategies to address these needs. Suggestions included ways to improve access to care for AYAs, to deliver cancer care that better meets the medical and psychosocial needs of AYAs, to develop educational programs for providers who care for AYA cancer survivors, and to enhance the evidence base for AYAs with cancer by facilitating participatio...
2017
While there is a large population of children and adults diagnosed with cancer, there is a significantly smaller number of individuals who have been diagnosed during their adolescent and young adult years. Due to their life course and developmental stages, this population presents with a unique set of needs while undergoing cancer treatment. This exploratory quantitative study evaluated the level of patient-centered care practiced with adolescent and young adult patients in the oncology unit at Valley Children's Hospital. The valid and reliable pre-established 20-item survey inquired about the adolescent and young adult patients' experiences with healthcare staff during their cancer treatments. This study found that high levels of patient-centered care was experienced among three of the four areas examined: (a) supportive and respectful relationships, (b) information sharing/communication and (c) supporting independence. The fourth area, teen centered services, however, demo...
Active therapy and models of care for adolescents and young adults with cancer
Cancer, 2011
The reduction in the cancer mortality rate in adolescents and young adults (AYA) with cancer has lagged behind the reduction noted in children and older adults. Studies investigating reasons for this are limited but causes appear to be multifactorial. Host factors such as developmental stage, compliance, and tolerance to therapy; provider factors such as lack of awareness of cancer in AYA and referral patterns; differences in disease biology and treatment strategies; low accrual onto clinical trials; and lack of psychosocial support and education programs for AYA all likely play a role. Recommendations for change from a recent international workshop include education of physicians and patients concerning AYA cancer, improved cooperation between pediatric and adult centers, age-appropriate psychosocial support services, programs to help AYA with issues relevant to them, dedicated AYA hospital space, improved accrual to clinical trials, the use of technology to educate patients and enhance communication between patients and the health care team, and ensuring that resident and fellowship training programs provide adequate education in AYA oncology. The longer term goal is to develop AYA oncology into a distinct subspecialist discipline within oncology. The ideal model of care would incorporate medical care, psychosocial support services, and a physical environment that are age-appropriate. When this is not feasible, the development of ''virtual units'' connecting patients to the health care team or a combination of physical and virtual models are alternative options. The assessment of outcome measures is necessary to determine whether the interventions implemented result in improved survival and better quality of life, and are cost-effective.
Adolescent and Young Adult Cancer Survivorship Educational Programming: A Qualitative Evaluation
JMIR cancer, 2017
This program evaluation considers the need for increased professional and patient education for adolescent and young adult (AYA) cancer survivorship. Due to the high incidence of late effects of cancer treatment among AYA cancer survivors, knowledge sharing and communications are needed throughout the transition from cancer care into community care. AYA survivors are likely to need developmentally appropriate psychosocial care as well as extensive follow-on surveillance by physicians who are educated and aware of the likely chronic conditions and late effects that may occur in these patients. The objective of this study was to evaluate the outcomes of the After Cancer Care Ends, Survivorship Starts for Adolescent and Young Adults (ACCESS AYA) programming. The intent of the ACCESS AYA program was to build health literacy around AYA survivorship issues and to stimulate improved communications between survivors and health care providers. This paper addresses the central research questi...