Test of Low-Literacy Video Guide for the Harvard Cancer Risk Index-G (HCRI-G)
Linda K. Larkey, Ph.D.
Many models of health behavior change begin with a premise that people have to believe they are at risk for disease before they change behavior. For example, the Health Belief and Extended Parallel Processing Models claim that one needs to perceive severity and personal susceptibility before one takes action against the threat of disease (Gutierrez-Ramirez et al., 1994; Witte, 1992). Studies of perceived cancer risk show strong relationships to many prevention and screening behaviors (McGarvey et al., 2003; Vernon 1999) making risk perception one of the logical targets for promotion of these behaviors.
Currently published methods of measuring and communicating cancer risk are specific to particular cancers, such as the Gail and Claus models for breast cancer (Euhus, 2001), and/or use genetic information for communicating very high risk (Hampel et al., 2000). These tools are useful in specific contexts, but for many people, perceived risk for cancer is not tied to a specific cancer site. Educating healthy individuals about cancer prevention behaviors requires a more general tool that cuts across cancer sites.
To communicate individualized risk for cancer in general, it is important to find a way to measure and communicate results in a simple yet meaningful way (Emmons et al., 1999). To fill this need, the Harvard Cancer Risk Index was adapted to assess overall risk for cancer. This adapted tool, the HCRI-General, combines the common risk factors and assigns weights to them according to the strength of effect predicted to contribute to risk across the most common cancer sites.
Because of the simplicity of this tool, it is intended for use as a risk communication and teaching tool. It may be particularly useful in contexts where a portable paper and pencil test is needed, such as in clinics and community centers serving low-income patients who may not regularly use (nor have access to) more complex or Web-based health information.
One important setting for identifying and teaching patients at risk is the primary care office. Unfortunately, primary care physicians are burdened by many tasks in addition to diagnosing and treating presenting symptoms (Cohen et al., 1994). This is particularly true in health-care settings with underserved and low-literate patients, adding a paper and pencil assessment such as the HCRI-G would be perceived inefficient for physicians or staff due to time requirements to coach patients through completion.
Health information literature often surpasses the literacy level of patients, especially those who most need the informationpatients of lower socioeconomic status with less initial knowledge about health and prevention (Davis et al., 1990). Even the simplest wording and layout may not serve people who cannot read. A video was developed to guide individuals through completion of the HCRI-G in a clinic setting serving indigent and low socioeconomic-status (SES) patients. Some of these patients had very low literacy levels.
Our study was designed to test the effectiveness of a video guide to assist patients at various levels of literacy to complete the HCRI-G. The strategy for testing this video was to compare individuals’ responses to video-guided administration across two other common methods of survey administration—a face-to-face interview and self-completion.
Development of Instrument — A team of interdisciplinary researchers led by Graham Colditz, M.D., Ph.D., at Harvard Medical School developed the Harvard Cancer Risk Index as a series of instruments to measure risk for 13 different cancers for individuals relative to U.S. populations averages (based on Surveillance Epidemiology and End Results data) (Colditz et al., 2000). Published work details the methods for developing and defining instruments used to weight risks and estimate relative risk (Colditz et al., 2000; Kim et al., 2004). The set of instruments is available for public use on www.yourcancerrisk.harvard.edu.
To develop the single HCRI-G instrument using methodology of the HCRI as a foundation, risk factor weights were considered for a selection of the most prevalent cancers. The risk factors with strongest contribution to the largest number of incident cancers were identified, resulting in 10-13 questions regarding modifiable and non-modifiable factors for men and for women (with the number of questions depending on age brackets and screening guidelines). The resulting instrument presents questions designed for binary scale (yes/no) responses, weighted according to contribution to risk (e.g., smoking more than 15 cigarettes per day receives a score of 8, while exercising less than three hours per week scores 2 points) (Figure 1).
Development of Video Guide — A 12-minute Quicktime video titled, “What’s Your Cancer Risk?” (Larkey and Siegert, 2002) was developed to assist participants in completing the HCRI-G. To assist participants with limited reading abilities, each question and answer option was color-coded in the paper survey and presented in the video in visual and auditory format, including color-coding and instructions for skip patterns. Introductory concepts about risk and specific scenes depicting risk-reducing behaviors were interspersed with images of the color-coded risk survey.
Each question was presented in the paper version in a strip of color; the video references the color of each question so that a low-literate patient could locate the position of the question and the answer appropriately. Skip patterns, that is, questions included or skipped depending on the answer to a prior question (e.g., if you are under 50, please skip to question 13; if you are 50 years of age or older, answer the next question), were pointed out visually and verbally in the video guide. Simple instructions for scoring and interpreting the scores were built into the survey and described in the video.
The video was designed initially by the research team. Team members first created a script that faithfully reflected the risk factor language from the HCRI-G. The biomedical communications expert then developed a professional script and storyboard around the core risk factor information, incorporating a series of visual images and action shots to illustrate the concepts and to add interest without detracting from the task instructions. Pacing was an important consideration in the editing process to provide the correct amount of time to complete each section in synch with the video. Each segment that required viewers to listen, decide, and mark their surveys included an appropriate pause.
We designed the study to test the comparability of the video-assisted method of administering the HCRI-G to two other methods of test taking using a crossover design with a two- to four-week “wash-out” period between administrations. The baseline administration was given without assistance, that is, participants completed the HCRI-G as a self-administered paper and pencil test. Each of the subsequent two administrations, video-assisted and personal-assisted methods, were assigned in different order, randomly varied by participant. The personal-assisted method utilized a trained interviewer who read the questions aloud and marked the responses given verbally by the participant.
We hypothesized that the participants’ answers given during the
video-assisted administration would be consistent with answers given during
the personal-assisted administration, since both methods provide guidance
that is designed to help participants overcome literacy problems they
may have with health-related materials. Concordance on these two methods
would provide support for comparability of the video as an effective means
of guiding the administration of the survey. Scores for the self-administered
method were hypothesized to be less correlated with the video-assisted
method. We had the expectation that low-literate participants may have
unreliable answers to items not fully comprehended in the self-administered
method due to low literacy.
Testing — For the first baseline administration, participants were given the survey and asked to complete it to the best of their ability (self-administration). Upon survey completion, the participants were randomly assigned to either the personal-assisted or video-assisted category first, and re-contacted after a two- to four-week washout period to complete the second test. After an additional two to four weeks, the alternate test was administered. When all tests were completed, scores were discussed with participants; the discussion included counseling for cancer prevention/screening.
Concordance of Final Scores — Participants’ scores were totaled according to instructions on the survey (self-administration) or as described in the video (video-assisted). High correlations were found between the participant computed score and the true calculated scores in methods that are assisted (.96 for video, .81 for personal-assisted) but low correlation for the respondent-only calculated score (in the self-administration) and true summed score (.26) indicating that participants were calculating their scores most correctly when guided by the video or with assistance from the interviewer, but much less accurately for self-administration.
Correlations of true scores between video and other modes of administration are as follows: self-administration and video-assisted (.89), and personal-assisted with video (.76), indicating that the summed risk item values across these methods are highly reliable.
The video-assisted method of administration of the HCRI-G shows moderate concordance to two other common methods of completion, indicating this method yields comparable results. Self-administration and personal-assisted methods both showed consistently high Kappa values in comparisons with video-assisted, with the exception of one question regarding level of physical activity in the personal-assisted/video-assisted comparison.
Although it was expected that the self-administration responses among
a literacy-compromised group might show less correspondence to the two
assisted methods, video- and personal-assisted, they appeared to be comparable.
This may have been due to the ease of comprehension of the survey in self-administration.
The language used in the survey was greatly simplified, avoiding words
that caused respondents to stumble during administration of the REALM.
REALM includes medical terms such as antibiotic, inflammatory, jaundice,
while the health concepts in the HCRI-G are expressed in lay terms/language,
such as “active 3 or more hours each week,” or “Do you
check your whole body for skin cancer?”. Thus, participants in self-administration
either completed all of the survey or none of the survey, indicating they
were either able to read well enough to answer the questions with a fair
comprehension or, if they could not read at all, they did not fill in
answers. This possibility is consistent with the dozen incomplete baseline
surveys that corresponded to REALM scores of 14 or lower (and the only
two others with such low scores attempted answers). Surveys with no answers
at baseline (self-administration) dropped out of the analysis. The remaining
comparisons were likely among those who could read the survey well enough
to comprehend it, yielding comparable scores between baseline (self-administration)
and video-assisted administration.
Finally, it should be noted that moderate and low health-literacy levels of participants, as indicated by the REALM scores, did not appear to prevent most participants from consistently completing the survey alone with assisted methods; only a handful of participants were completely unable to read and complete the survey. In such cases where literacy levels range down to no reading skills whatsoever, using a video guide to assist completion may be an effective, more efficient way than taking the time of interviewers. Survey scoring also seems to require some assistance across literacy levels, and the video method of assistance for calculating summed scores works well.
The HCRI-G is a brief tool that can be used to teach patients about their individual risk level and modifiable risk factors for cancer, and it is likely that adequate completion of the survey may be obtained by simple self-administration, even among fairly low-literate populations. Those who cannot read at all could benefit from assistance, either from a face-to-face interviewer or from a video.
The video presentation created to guide respondents through completing the HCRI-G may be an effective way to standardize delivery and minimize the use of staff time in a primary care practice setting. The video-assisted method of administering the HCRI-G is comparable to either self-administration or personal-assisted methods, with the advantage of assuring capability of completion to those who cannot read at all. Final scores on the HCRI-G (as indicators of level of risk for cancer) are best computed with staff assistance, but satisfactory results are achieved with the video-assisted method of guiding participants through scoring their own surveys. Improved capability for completion of those who cannot read, combined with more accurate final score calculations, makes the HCRI-G a valuable tool.
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Linda K. Larkey, Ph.D.
Graham Colditz, M.D., Ph.D.
Jeffrey Wilson, Ph.D.
Alicia Carson, B.A.
Keven Siegert, B.A.
Copyright 2005, The Journal of Biocommunication, All Rights Reserved
Table of Contents for VOLUME 31, NUMBER 3