Health information needs and health-related quality of life in a diverse population of long-term cancer survivors

Objective

To investigate health information needs and their association with health-related quality of life (HRQOL) in a diverse, population-based sample of long-term cancer survivors.

Methods

We analyzed health information needs from 1197 cancer survivors 4–14 years post-diagnosis drawn from two cancer registries in California. Multivariable regression models were used to identify factors associated with endorsement of total number and different categories of needs. The relationship between number of needs and HRQOL and effect modification by confidence for obtaining information was examined.

Results

Survivors reported a high prevalence of unmet information needs in the following categories: side effects & symptoms: 75.8%; tests & treatment: 71.5%; health promotion: 64.5%; interpersonal & emotional: 60.2%; insurance: 39.0%; and sexual functioning & fertility: 34.6%. Survivors who were younger, non-White, and did not receive but wanted a written treatment summary reported a higher number of needs. Number of information needs was inversely related to mental well-being, particularly for those with low confidence for obtaining information (P < 0.05).

Conclusion

These patterns suggest disparities in access to important health information in long-term survivors and that affect HRQOL.

Practice Implications

Findings suggest a need for tailored interventions to equip survivors with comprehensive health information and to bolster skills for obtaining information.