A Halifax pediatric oncologist calls for a greater effort to ease children’s transitions to adult care

When an article about Dr. Conrad Fernandez, a Halifax pediatric oncologist concerned about how young adult cancer patients are treated, appeared in the local Chronicle Herald it brought a quick, if anguished, response. The mother of a young cancer patient wrote a letter to the editor detailing the experiences of her son.

In the original article, Dr. Fernandez described adolescents and young adults with cancer as “an orphaned group whose distinct diseases and needs aren’t a focus of either child or adult cancer care programs.”

The woman congratulated Dr. Fernandez for “his insight into the challenges of adolescents/young adults living and dying with cancer” and disclosed that her son, who was diagnosed with cancer at 13, was dead by 19. She described her son’s transition from pediatric to adult care as disappointing: “Medical personnel at all entry points have yet a lot to learn from adolescents.”

Dr. Fernandez agrees, but, fortunately, he says progress is being made to remedy this distressing allegation. In fact, many pediatric and adult oncology physicians and health-care workers are now vocal advocates for the creation of an enlightened medical environment that will improve the quality of care this unique group receives.

His observations reflect a growing body of literature summarized in the article “Adolescents and young adults with cancer: An orphaned population,” in the February issue of Pediatrics & Child Health. In the article, co-authored by Dr. Ronald Barr of McMaster University, it is acknowledged that many factors have contributed to adolescents and young adults(AYAs)becoming “a lost tribe.”

Dr. Fernandez says, “Their cancers tend to be different from the main responsibilities of either pediatric or adult oncologists. Also, there are differences in their response to cancer treatment modalities. And, historically and currently, they have had a much lower participation in clinical trials and as a result have had much less progress in understanding the biology of their tumours and effective treatment strategies.”

He points out that AYAs(15 to 29)face a number of challenges that may include not only a distinct cancer epidemiology but, often, an evolving hormonal milieu amid the issues related to the usual maturation process and the search for autonomy.

“We have made tremendous progress in the treatment of young children in the last three or four decades, but that kind of progress hasn’t been realized in this group.”

He says further research into ways to assist adolescents with these supportive care issues is an important piece of the puzzle. Nevertheless, he says adolescent cancer patients still remain in a kind of research “limbo.”

Dr. Fernandez says this must be resolved because clinical trial participation offers the prospect of a superior outcome for AYAs who are treated with some pediatric rather than adult-oriented protocols. “This is especially true for acute leukemia and some bone sarcomas.”

He says one of the most important strategies that will result in more appropriate care for AYAs will be for pediatric tertiary care centres to re-examine their often arbitrary age limits set at 16 to 18 years for patient admission.

“This denies many older AYAs the considerable expertise of multidisciplinary teams usually available in centres where there generally is a more family-focused philosophy, greater emphasis on long-term care planning and a more sensitive approach to the stress that takes place during the transition from a pediatric to an adult health-care program.”

He notes collaboration between specialists is vital during this process. While pediatric oncology services excel when it comes to the treatment of pediatric leukemia and some embryonal solid tumours, they have little experience in the management of cancers found more commonly in adults.

“Adult oncologists have much better experience and knowledge of how to treat, for example, skin melanomas, young women with cervical cancer or young men with certain types of testicular cancer. We always seek advice from them when we’re confronted with these cancers.”

The authors of the paper strongly endorse triaging AYA cancer patients not solely by age considerations but also by the judicious selection of a facility where their treatment plan better addresses both their medical and emotional needs.

Dr. Fernandez is already seeing that restrictive age limits are no longer always a major barrier to AYAs participating in clinical trials in this country.

He credits the Children’s Oncology Group, an international organization, for playing a leading role in addressing AYA issues with the establishment of an AYA committee. One of its major objectives has been to discourage age limits and increase the availability of studies to adolescents with both common and rare malignancies. “Adult and adolescent tumours are sometimes very rare. So if you have 10,000 breast tumours to look after and only 50 sarcomas in adolescents, there may be less interest in studying them.”

Dr. Fernandez says he has great sympathy for the mother who wrote to the Halifax newspaper(to express her feeling that medical personal have a lot to learn from adolescents). He says he and others will continue to lobby for both adult and pediatric oncology centres where AYAs will receive the diverse and specialized services they rightly deserve.

But he does lament that programs for long-term followup are often “woefully inadequate.”

Both Drs. Fernandez and Barr say AYA patients should be rigorously studied so that evidence-based approaches may be used to reduce waiting times and ensure prompt referral to appropriate centres. They say AYAs should also be given an increased role in clinical trials. Ideally, Dr. Fernandez says he wants this all to be done with the goal of fostering better compliance, providing comprehensive supportive care and the promotion of programs designed to enhance survivorship.

He admits it’s a long “wish list” but, after a number of years in oncology, he says he is convinced it will translate not only into substantially improved prognoses for AYAs, but also a lot fewer “disappointments.”

“It is a challenging field that’s extremely rewarding—both for having children who survive and also helping those who don’t get through their illness,” he says.

“We have had great success recently and its very appealing to follow children for many years, to see them graduate from high school and go on to college. It’s very fulfilling and I wouldn’t want to be anywhere else.”

Dorothy Grant is a freelance writer in Halifax.