Adolescence and young adulthood are times filled with significant life transitions – from navigating puberty and higher education to establishing careers and building adult relationships. For adolescents and young adults (AYAs) facing a cancer diagnosis, these already complex years become even more challenging.
Approximately 90,000 AYAs, defined as individuals aged 15 to 39, are diagnosed with cancer each year. This unique patient population often requires specialized support to navigate the intricacies of cancer treatment and ensure they receive the highest quality of care. Recognizing this critical need, cancer centers are increasingly developing programs specifically designed to Aim Cancer Care Quality Program initiatives towards meeting the distinct needs of AYAs.
A recent study from the University of North Carolina (UNC) Lineberger Comprehensive Cancer Center highlights the significant positive impact of such programs. Their decade-long AYA program has demonstrably improved the support and care provided to young cancer patients. The program has led to substantial increases in crucial areas such as fertility counseling, clinical trial enrollment, and adherence to nationally recommended care guidelines. These findings underscore the importance of dedicated programs in achieving aim cancer care quality program goals for AYAs.
Dr. Jacob Stein from UNC Lineberger, who presented the program evaluation at the American Society of Clinical Oncology’s Quality Care Symposium, emphasizes the growing interest in replicating their success. “A lot of [centers] are now reaching out and asking: ‘How do we do this?’” he stated, noting the timeliness of this movement as cancer rates rise in younger adults. This increasing prevalence further emphasizes the necessity for widespread implementation of effective aim cancer care quality program strategies tailored for AYAs.
The Genesis of an AYA-Focused Program: A Patient’s Vision for Quality
The UNC Lineberger AYA Cancer Program originated from the vision of Sophie Steiner, a 14-year-old patient treated at UNC in 2014 for a rare cancer. Sophie recognized a gap in the healthcare system’s approach to young people with cancer. She felt that the environment and care models were primarily designed for younger children, not reflecting the needs of teenagers and young adults.
Despite her young age and personal battle with cancer, Sophie articulated a clear need for improvement. “[Before she passed away,] she told her parents: ‘The health system does not take particularly good care of young people, so I want you to try to do better,’” Dr. Stein recounted.
Inspired by Sophie’s plea, her parents established the Be Loud! Sophie Foundation. This foundation provided the crucial initial support that enabled the UNC AYA Cancer Program to launch in 2014 with a single social worker. This humble beginning has since blossomed into a multidisciplinary team of 11 professionals by 2024, including nurse practitioners, fertility counselors, and psychologists, all dedicated to the aim cancer care quality program for AYAs.
Tailoring Care to Diverse AYA Needs for Enhanced Quality
While the UNC program has expanded significantly, resources are still finite, preventing outreach to every AYA patient at UNC Lineberger. However, Dr. Stein emphasizes that a uniform approach is not necessarily optimal. AYAs are a diverse group with varied needs. A blanket approach to care would not effectively aim cancer care quality program resources where they are most needed.
The program focuses on identifying and supporting AYAs at the highest risk of facing challenges during cancer treatment. This targeted approach acknowledges the wide spectrum of experiences within the AYA demographic. The needs of a teenager living at home with Hodgkin lymphoma differ greatly from those of a young adult with advanced osteosarcoma or a young mother with early-stage breast cancer. By tailoring assistance to individual circumstances, the program can more effectively aim cancer care quality program interventions and maximize their impact.
Between 2015 and 2022, the UNC program engaged with over 25% of the approximately 4,000 AYAs treated at the center, a significant increase from just 6% initially. Program participants were often younger, unmarried, Black, and diagnosed with advanced or blood cancers – demographics often facing greater systemic barriers within healthcare. Despite these higher needs, participants demonstrated better adherence to recommended care, showcasing the program’s success in its aim cancer care quality program objectives.
Notably, nearly 45% of AYAs in the program enrolled in clinical trials, compared to 26% of non-participants. Furthermore, program participants were significantly more likely to receive fertility counseling, palliative care, and advanced care planning consultations, all crucial components of comprehensive, high-quality cancer care. These outcomes clearly demonstrate the program’s effectiveness in helping AYAs access guideline-recommended care and achieve the overarching aim cancer care quality program.
Addressing Universal Challenges to Improve AYA Cancer Care Quality
Approximately half of NCI-Designated Cancer Centers now offer some form of AYA program, according to Dr. Jeanelle Folbrecht, founder of the City of Hope Children’s Cancer Center AYA program. While program structures vary, common challenges and needs consistently emerge across different centers, highlighting areas where focused efforts can aim cancer care quality program outcomes nationally.
Financial concerns, fertility preservation, and disruptions to education and career paths are consistently reported as major areas of need for AYAs with cancer. Peer support is another critical element. Dr. Folbrecht notes, “AYAs talk a lot about wanting to connect with people who understand what they’re going through.” Programs often facilitate these connections through online groups, camps, and in-person meetups, recognizing the vital role of peer support in enhancing the overall aim cancer care quality program by addressing psychosocial needs.
Expanding Access and Utilizing Technology to Enhance Quality Programs
Cost remains a significant barrier to establishing and sustaining AYA programs in both large and small hospitals, explains Dr. Emily Tonorezos, director of NCI’s Office of Cancer Survivorship. To overcome this, leveraging technology presents a promising avenue to aim cancer care quality program initiatives towards greater accessibility and affordability.
NCI is currently funding studies exploring web-based resources to help AYAs manage cancer-related distress and treatment symptom management. These digital interventions have the potential to reduce costs for both healthcare providers and patients while extending the reach of these vital support services. Technology-driven solutions are crucial for scaling aim cancer care quality program efforts to meet the growing need.
Non-profit organizations like Teen Cancer America are also playing a crucial role by providing funding to hospitals seeking to develop AYA programs. Despite these positive developments, many AYAs will still receive treatment at centers without dedicated programs, underscoring the importance of self-advocacy. AYAs should proactively ask questions about fertility risks, financial aid, and clinical trial opportunities. Seeking second opinions is also encouraged to ensure comprehensive treatment plans that prioritize both effective cancer management and quality of life. Ultimately, the collective aim cancer care quality program requires collaborative efforts from healthcare providers, institutions, non-profits, and patients themselves to ensure that every young person facing cancer receives the comprehensive and tailored support they deserve.
