Uncertainty in adolescents and young adults with cancer

To describe uncertainty in three groups of adolescents and young adults with cancer at specific times in their cancer experience: newly diagnosed, diagnosed one to four years, and diagnosed five or more years.

Descriptive, cross-sectional, comparative.

Six pediatric oncology centers in North America.

193 adolescents and young adult cancer survivors aged 11-22 years, able to read English, with no central nervous system disease.

A booklet of questionnaires was completed during a clinic visit or hospitalization. Uncertainty was measured using Mishel's Uncertainty in Illness Scale.

Uncertainty and time since diagnosis.

No significant differences were found in the overall level of uncertainty among the three time-since-diagnosis groups; however, analysis of variance on individual items detected significant group differences for 8 of the 33 items. Newly diagnosed survivors had significantly higher uncertainty for future pain, the unpredictable illness course, staff responsibilities, and concerns about when they would be able to care for themselves. Survivors five or more years from diagnosis had significantly higher uncertainty related to knowing what was wrong, and they had more unanswered questions and higher uncertainty compared to the two other groups about the probability of successful treatment. All of the survivors had high uncertainty about the multiple meanings of communication from doctors.

The overall level of uncertainty remained unchanged across the survivorship continuum, but differences existed in specific concerns.

Uncertainty is important to consider far beyond the treatment period, particularly assessment of information needs and acknowledgment of inherent uncertainty throughout cancer survivorship.