Saturday, 15 January 2005 - 12:00 PM

This presentation is part of: Poster Session II

Information Needs of Adolescents with Cancer

Purpose: The purpose of this study is to describe the importance ratings of information for adolescents with cancer (AWC), to compare these for two time-from-diagnosis groups of AWC and to determine gender and age group differences.

Methods: A convenience sample of AWC, ages 11-21, from two studies based on the Adolescent Resilience Model (ARM) (Haase) was used in the analysis. The sample included adolescents with newly diagnosed cancer (N=74) and adolescent survivors who had been diagnosed with cancer from 1-3 years ago (N=39). The instrument, the Information Preferences of Adolescents (IPA), was developed by Haase from qualitative studies for use in the ARM studies. The IPA is a Likert-type scale asking respondents to rate each of the 18 items for current importance (4 choices from very important to useless) with two blanks for write-ins. Scores on each of the items and the total score were analyzed for each of the time- from-diagnosis groups to determine the means, standard deviations, and valid ~{!0~}n~{!1~}. The gender differences within each time-from-diagnosis group were analyzed using the Mann-Whitney U Test and age group differences (11-14, 15-16, and 17+ years) were analyzed in a similar way using the Kruskal-Wallis Test. Analysis of the qualitative ~{!0~}add-on~{!1~} items consisted of independent theme generation by two of the researchers with consensus resulting in 5 themes.

Results: Both samples of AWC rated the need for information as high. The six items rated the highest (mean > 3.5) for both groups included adjusting to the diagnosis, dealing with treatment and side effects, keeping a normal life and relationships with family. Additional items with a mean of >3.5 for the one to three years from diagnosis group included dealing with depression, loss, and death, and helping others with cancer. While there were no significant age group differences in the samples, the females had higher item means (some significant at p <.05) and significantly different total scores (p <.01) in both groups.

The ~{!0~}add-on~{!1~} items included a broad array of concerns. The themes were as follows: treatment and side effects, how their future might be affected by the cancer, social issues, and personal and emotional issues. In some ways these themes were similar to items on the IPA, yet were worded more specifically such as ~{!0~}pain management~{!1~} (qualitative) and a more general IPA item ~{!0~}ways to deal with procedures.~{!1~} In the theme of social, one adolescent listed ~{!0~}learning how to talk to the Drs and RNs and visa versa~{!1~} bringing an important issue of the new relationship with medical providers brought about by the diagnosis of cancer.

Conclusion: AWC both at diagnosis and years from the initial diagnosis place a high value on the need for information with females rating the importance for information higher on all items. Beyond survival, the fundamental goal of cancer treatment is the maximum achievable level of mental and physical health. Providing the needed information related to the cancer experience is one important aspect of achieving this goal.

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