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

https://doi.org/10.1016/j.pec.2012.08.014Get rights and content

Abstract

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.

Introduction

Cancer survivors encompass the population with a history of cancer from the point of diagnosis through the balance of life [1]. Meeting information needs among post-treatment cancer survivors is a vital component of quality survivorship care [2], [3], [4], yet most assessments of cancer survivors’ information needs have focused on the treatment phase [5]. When assessed, survivors have reported higher unmet supportive care needs post-treatment than at completion of treatment [6]. While unmet information needs have been reported across different cancers and populations, disparities in information-seeking experiences have also been found, with low-income and African–American individuals indicating more problems in obtaining health information [7]. Survivors who are Non-Hispanic White and highly educated are more likely to seek information and utilize more sources [8]. Furthermore, low tangible social support has been linked to low health literacy among older adults [9], although whether this relationship holds for cancer survivors is unclear.

Unmet information needs not only reflect the level of need itself but also potentially reduced capacity to obtain information. Bandura's theory of self-efficacy suggests that expectations of effective performance (e.g., successful procurement of information) are likely to increase a behavior (e.g., information-seeking) to meet needs [10], [11]. In addition, having more information about health has been linked to increases in healthy behaviors [12]. Survivors 2–5 years post-diagnosis with high levels of unmet needs have been shown to have poorer health-related quality of life (HRQOL)[13] and increased incidence of anxiety and depression [14]. Thus facilitating the confidence to obtain information may help survivors feel able to meet their own information needs, thereby reducing unmet needs and improving HRQOL.

The U.S. cancer survivor population is growing, and over half of survivors alive today are five or more years past their initial diagnosis [15]. Although many survivors reduce their use of regular follow-up care as time after completion of cancer treatment increases, attention to the late effects from cancer treatment among long-term survivors is rising [16]. Thus, it is important to document health information needs among these long-term survivors to inform them and their healthcare providers across the survivorship continuum. To extend previous work on health information needs in cancer survivors with more recent diagnoses [13], we analyzed information needs experienced by cancer survivors more than 4 years post-diagnosis drawn from a diverse population-based sample. Specifically, we (1) examined the relationship of survivors’ information needs with their sociodemographics and key follow-up care related characteristics; (2) described the type unmet information needs in long-term cancer survivors (3) analyzed associations between information needs and survivors’ HRQOL, investigating confidence to obtain information as a potential moderator of this relationship.

Section snippets

Methods

We analyzed data from the FOllow-up Care Use among Survivors (FOCUS) study, a population-based investigation of the follow-up care experiences among long-term cancer survivors (http://cancercontrol.cancer.gov/ocs/focus.html). We investigated health information needs among survivors of breast, prostate, colorectal, and gynecologic (endometrial and ovarian) cancer who were between 4 and 14 years past their initial diagnosis. We included a diverse racial/ethnic population from two Surveillance

Sample description

Of the 1197 participants, there were 292 breast, 289 prostate, 305 colorectal, and 311 gynecologic cancer survivors. Table 1 describes the sample and presents bivariate associations between sample characteristics and mean number information needs. By design, approximately half (46%) of survivors were diagnosed at least 10 years prior to survey. Forty-two percent were Non-Hispanic White (NHW), 13% were Hispanic White (HW), 20.6% were African-American (AA), 22.3% were Asian-American/Pacific

Discussion

Many long-term survivors reported a diverse array of health information needs. Younger survivors, non-Whites, and those who did not receive but wanted a written summary of their cancer treatment reported a higher number of needs. Conversely, colorectal cancer survivors and those who did not want a treatment summary reported a lower number of needs. Information needs by category were highly endorsed in the areas of tests & treatment, health promotion, side effects & symptoms, and interpersonal &

Acknowledgments

This study was supported under NCI SEER contract numbers: N01-PC-35136, N01-PC-35139 (http://cancercontrol.cancer.gov/ocs/focus.html). The authors would like to acknowledge Ms. Gretchen Keel (Information Management Services, Inc., Rockville, MD) for her assistance with data analysis on this project. This study has been presented in part at a poster at the 2011 American Association of Cancer Research Science of Cancer Health Disparities Meeting, on September 19, 2011, in Washington, DC.

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      They noted that the highest prevalence of unmet needs were as follows: (1) side effects and symptoms, 75.8%; (2) tests and treatment, 71.5%; (3) health promotion, 64.5%; (4) interpersonal and emotional, 60.2%; (5) insurance, 39%; and (6) sexual function and fertility, 34.6%. They noted that the number of unmet needs was inversely proportional to mental well-being.6 This highlights that, while progress has been made, there is a lot more work to be done.

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    This manuscript was written in the course of employment by the United States Government and it is not subject to copyright in the United States. The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the National Cancer Institute or the National Institutes of Health. We confirm all patient/personal identifiers have been removed or disguised so the patient/person(s) described are not identifiable and cannot be identified through the details of the story.

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