Attention, Education, Prevention
There is international recognition that cancer in young people is an important issue and this charter calls for greater awareness and attention for this group of individuals. We will not let these unique needs and rising incidence rates be ignored.
Young people are neither pediatrics nor geriatrics and their unique needs – medically, developmentally, socially, and economically- should be addressed through specialized care. Regardless of financial, familial, ethnic, or other backgrounds, access to quality cancer care and age-appropriate support is a right, not a privilege.
Young people with cancer have the right to:
1. Receive education about cancer and its prevention including early detection
We know that many cancers that develop later on in life are due to health risk behaviors (tobacco use, poor diet, and physical inactivity leading to obesity, sexually transmitted infections, etc.) and environmental carcinogens. However, cancers that are most common in young people are rarely preventable. Therefore, the earliest possible detection of cancer in a young person is critical.
2. Be taken seriously when seeking medical attention and receive the earliest possible diagnosis and speedy referral for suspected cancer
Young people may delay seeking medical care because of their feelings of invincibility and commonly, a lack of routine medical care. Additionally, there is under-recognition by medical professionals of cancer or its symptoms and signs in this age group. The combination of these factors contributes to young people being at a higher risk for delay in diagnosis or misdiagnosis, which can adversely affect survival outcomes.
3. Have access to suitably qualified multi-disciplinary medical specialists with significant experience in treating cancer in this age group
The biology of cancer in a young person is not fully understood. As a result, there should be open access to physicians who are the most familiar with this unique age group and consultation across disciplines. This will help to ensure access to the most appropriate care by qualified providers.
4. Information about and reasonable access to clinical trials and treatment that has been clinically trialed with people in their age group
Young people are the least represented age group in clinical trials. A gap in participation results from a lack of available trials, lack of informing a young person about clinical trials, inability or reluctance of the patient to participate in the trial, and financial limitations to being both the patient and family-care provider. Seeking out trials that may be available in other treatment centers (for example, an adult trial for a young person being treated in a pediatric setting) and providing education and support to facilitate adherence to trial requisites can contribute to greater enrollment rates.
Due to developmental changes, cancer biology and patient tolerance for chemotherapy change in late adolescence and adulthood compared with childhood, affecting both the ability to deliver effective therapy and the likelihood of response. In order to ensure the most appropriate treatment protocols, there also needs to be a better understanding of how a drug is used in the body, how it is broken down, the potential side effects, and which of these side effects are manageable and which are dangerous.
5. Receive age-appropriate support including, but not limited to, psychosocial, community, and palliative support services
The spectrum of young people cancer is unique and diverse. It can also be a difficult process to navigate through and professional assistance throughout is crucial. The psychosocial needs of young people are unique, broader in scope, and often times misunderstood in comparison to other age groups. Specialized services and resources to assist with relationships with peers, body image, isolation, dating and sexuality, and interruptions in school and career are critical to the success of these survivors.
6. Empowerment in making decisions supported by a full and detailed explanation of all treatment options and long-term effects of the disease enabling them to actively influence their care
A thorough understanding of side effects and rehabilitation options available plays an important role in psychosocial issues that face young people with cancer. Building trust between health care providers and survivors is an important step in empowering young people to negotiate and navigate the health care system and take an active role in their own care.
Relationships can be developed that facilitate open communication and balance a young person’s needs for autonomy and independence. Concurrently, continued engagement in education about their cancer can contribute to better outcomes. The highest quality of care results from a strong relationship and mutual respect between physicians and patients.
7. Fertility preservation, as well as information and counseling concerning short-term and long-term effects of cancer and treatment, which affect fertility
Fertility is a primary concern for young cancer survivors. Full disclosure about the impact of treatment decisions on fertility and access to fertility preservation options at the time of diagnosis is imperative for all young people.
8. Have access to specialized treatment and services in age-appropriate facilities alongside their peers
Young people can fall into a “no man’s land” between pediatric and adult hospitals. Specialized facilities can provide an environment tailored to young adult needs. Dedicated units can allow young adults to be treated alongside their peers, not in a child’s room and not sitting next to an older adult, and provide access to staff focused on developing expertise related to young cancer survivors.
9. Financial and practical support to minimize the burden of the disease during treatment
Many young people are in the early stages of financial and professional development when they are diagnosed with cancer. They likely have not yet established large sums of savings and as a result, are particularly vulnerable to financial hardship as a result of their cancer diagnosis and subsequent treatments.
Young people are most likely to be under- or uninsured as compared with other age-groups. In addition to facing the prospect of bankruptcy due to medical costs and lost income, a lack of insurance is often a barrier to obtaining appropriate referrals and second opinions and receiving the best possible care.
10. Elimination of all forms of discrimination, during and beyond treatment, in education, vocation, and insurance, or in the community.
Young people affected by cancer experience great phases of transition surrounding diagnosis, initiation of therapy, school or job re-entry, post-treatment follow up, and when transferring from pediatric to adult care. Increasing cancer awareness and reducing cancer-related stigmas, myths, and misperceptions in the community are just as important as personal planning and stress management. A careful balance can facilitate coping and provide a smooth transition for young people after completing their treatment.