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(Reuters Health) – A small study suggests that most teens and young adults with cancer wish to have an explanation about the treatment of their tumors, but nearly one in four expresses regret for the initial treatment decisions made.
Researchers interviewed 203 cancer patients aged 15 to 29 within six weeks of diagnosis to determine their preferences and decision-making experiences. After four months and one year, they again checked with these young patients if their feelings about treatment decisions changed over time.
At first, 58% of patients said they wanted to share responsibility for choosing the best course of action, and 51% wanted limited involvement of their parents. Most had the decisive role they wanted, the researchers note.
However, 24% of participants said during the first interviews that they regretted the treatment decisions that had already been made. And after four months, 23% of them expressed doubts about these choices, just like 19% after one year.
"The regrets have been badociated with negative psychological outcomes, including anxiety and depression," said Dr. Jennifer Mack, lead author of the study, from the Dana-Farber Cancer Institute in Boston.
"While these negative psychological findings are worrisome, we also found some potential good news, that patients who trusted their oncologists and felt that their oncologists understood that their personal values seemed to be relatively protected from regret," he said. Mack by email.
"This suggests that oncologists who care for these patients can play an important role in helping patients make good decisions for themselves and feel confident they have made the best decisions possible," Mack added.
Of the patients who did not have the decision-making role they would have preferred, most had a more pbadive role than parents and doctors. But the decision-making role was not related to the likelihood of feeling regret later.
Cancer patients diagnosed in adolescence and early adulthood may have treatment needs that are different from those of younger children or older patients, largely because they are developing their sense of autonomy and their identity, pediatric researchers say.
Although these adolescent and young adult patients generally want to be heard, some parents and oncologists are still trying to protect them from difficult information. This can leave patients without all the facts they need to make informed decisions about treatment and may also mean that patients have unmet needs in terms of physical and mental health, writes the study team.
The study found that young patients in the study were 83% less likely to regret initial treatment decisions when they had full confidence in their oncologists.
They were also 87% less likely to express doubts about initial treatment when they felt that their oncologists understood what was important to them at the beginning of treatment.
The findings suggest that parents should be careful to exclude adolescents and young adults from treatment decisions and recognize that these young patients may need more or less involvement to feel comfortable with their plan. treatment, said Valerie Crabtree, psychosocial services manager at St. Jude Children's Research Hospital in Memphis, Tennessee.
"It is certain that parents of teenagers should involve their children as much as the teenager is comfortable with (in) the decision-making process," said Crabtree, not involved in the Study, by e-mail.
"At the age when teenagers reach adulthood, parents must be totally inspired by their adult children," Crabtree added. "If you ask them for their opinion, they should offer it. If their young adult child does not ask for their opinion, they must support their child's decision and not offer spontaneous advice. "
SOURCE: bit.ly/2IGOBmU Pediatrics, online April 18, 2019.
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