By Lisa Rapaport

(Reuters Health) – Most teens and young adults with cancer want a voice in how their tumors are treated, but almost one in four express regret about the initial treatment decisions made, a small study suggests.

Researchers surveyed 203 cancer patients, ages 15 to 29, within six weeks of their diagnosis to ask about their decision-making preferences and experiences. They checked back with these young patients again after four months and one year to see if their feelings about treatment decisions changed over time.

At the outset, 58 percent of the patients said they wanted to share responsibility for deciding their best course of action, and 51 percent wanted limited involvement from their parents. Most had the role in decision-making that they wanted, the researchers note.

But 24 percent of participants said in the initial interviews they regretted the treatment decisions that had already been made. And, after four months, 23 percent expressed doubts about these choices, as did 19 percent after one year.

“Regret was associated with negative psychological outcomes including anxiety and depression,” said lead study author Dr. Jennifer Mack of the Dana-Farber Cancer Institute in Boston.

“While these negative psychological outcomes are worrisome, we also found some potential good news, which is that patients who trusted their oncologists and felt their oncologists understood their personal values appeared to be relatively protected from regret,” Mack said by email.

“This suggests that oncologists who care for these patients can have an important role in helping patients to make good decisions for themselves and to feel comfortable that they made the best possible decisions,” Mack added.

Among patients who did not have the decision-making role they would have preferred, most had more passive roles relative to parents and doctors. But decision-making role was not tied to the likelihood of feeling regret later.

Cancer patients who are diagnosed during adolescence and early adulthood may have treatment needs that are distinct from younger children or older patients, largely because they’re in the process of developing their sense of independence and their identities, researchers note in Pediatrics.

Although these teen and young-adult patients generally want a voice in their care, some parents and oncologists still try 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 patients have unmet physical and mental health needs, the study team writes.

Young patients in the study were 83 percent less likely to express regret about initial treatment decisions when they trusted their oncologists completely, the study found.

They were also 87 percent less likely to voice doubts about initial treatment when they felt their oncologists understood what was important to them when treatment started.

The results suggest that parents need to be careful about excluding teens and young adults from treatment decisions, and recognize that these young patients may need varying degrees of involvement to feel comfortable with their treatment plan, said Valerie Crabtree, chief of psychosocial services at St. Jude Children’s Research Hospital in Memphis, Tennessee.

“Certainly, parents of teens should involve their children as much as the adolescent is comfortable (with) in the decision-making process,” Crabtree, who wasn’t involved in the study, said by email.

“As adolescents age into young adulthood, parents should take their cues completely from their young adult children,” Crabtree added. “If they are asked for their input, they should offer it. If their young adult child does not ask for their opinion, they should support their child’s decision and not offer an unsolicited opinion.”

SOURCE: Pediatrics, online April 18, 2019.