Development of a survey to identify vaccine-hesitant parents: the parent attitudes about childhood vaccines survey.

OBJECTIVE: To develop a survey to accurately assess parental vaccine hesitancy. RESULTS: The initial survey contained 17 items in four content domains: (1) immunization behavior; (2) beliefs about vaccine safety and efficacy; (3) attitudes about vaccine mandates and exemptions; and (4) trust. Focus group data yielded an additional 10 survey items. Expert review of the survey resulted in the deletion of nine of 27 items and revisions to 11 of the remaining 18 survey items. Parent pretesting resulted in the deletion of one item, the addition of one item, the revision of four items, and formatting changes to enhance usability. The final survey contains 18 items in the original four content domains. METHODS: An iterative process was used to develop the survey. First, we reviewed previous studies and surveys on parental health beliefs regarding vaccination to develop content domains and draft initial survey items. Focus groups of parents and pediatricians generated additional themes and survey items. Six immunization experts reviewed the items in the resulting draft survey and ranked them on a 1-5 scale for significance in identifying vaccine-hesitant parents (5 indicative of a highly significant item). The lowest third of ranked items were dropped. The revised survey was pretested with 25 parents to assess face validity, usability and item understandability. CONCLUSIONS: The Parent Attitudes about Childhood Vaccines survey was constructed using qualitative methodology to identify vaccine-hesitant parents and has content and face validity. Further psychometric testing is needed.

Women's interest in taking tamoxifen and raloxifene for breast cancer prevention: response to a tailored decision aid.

Although tamoxifen can prevent primary breast cancer, few women use it as a preventive measure. A second option, raloxifene, has recently been approved. The objective of the study was to determine women's interest in tamoxifen and raloxifene after reading a decision aid (DA) describing the risks and benefits of each medication. Women with 5-year risk of breast cancer ≥ 1.66 from two large health maintenance organizations were randomized to receive a DA versus usual care. After reading an on-line DA that discussed the risks and benefits of tamoxifen and raloxifene, women completed measures of risk perception, decisional conflict, behavioral intentions, and actual behavior related to tamoxifen and raloxifene. 3 months following the intervention, 8.1% of participants had looked for additional information about breast cancer prevention drugs, and 1.8% had talked to their doctor about tamoxifen and/or raloxifene. The majority, 54.7%, had decided to not take either drug, 0.5% had started raloxifene, and none had started tamoxifen. Participants were not particularly worried about taking tamoxifen or raloxifene and did not perceive significant benefits from taking these drugs. Over 50% did not perceive a change in their risk of getting breast cancer if they took tamoxifen or raloxifene. After reading a DA about tamoxifen and raloxifene, few women were interested in taking either breast cancer prevention drug.

The quality of cancer patient experience: perspectives of patients, family members, providers and experts.

BACKGROUND: Anecdotes and limited evidence suggest that a significant percentage of cancer patients encounter troublesome problems in the course of their care. METHODS: The authors collected data about barriers to and facilitators of high-quality cancer care and innovative solutions to improve quality from three sources: focus groups with patients, family members of cancer patients and providers; site visits to cancer care providers and organisations in three American communities; and expert interviews. RESULTS: The authors' respondents consistently described a similar list of problems facing the individual with a suspicion or diagnosis of cancer and his/her family: delays in and lack of coordination of care, patient information gaps and passivity, inadequate attention to emotional and social problems, and difficulty accessing services because of inadequate insurance, limited financial resources or rural residence. The fragmentation and uncertain accountability of cancer care contribute to these issues. Respondents recommended linking patients with a care navigator or manager, using computer technology to better inform and support patients and connect providers, and reforming provider reimbursement to encourage more patient-centred care. CONCLUSIONS: Cancer patients and their families have urgent needs for information and support especially early in their course. To meet these needs, early cancer care must be better organised, integrated, and patient centred. The Institute of Medicine's Model for the Delivery of Psychosocial Services appears to provide a relevant guide to delivering cancer care that better meets patient and family needs.

A new audience segmentation tool for African Americans: the black identity classification scale.

Many health communications target African Americans in an attempt to remediate race-based health disparities. Such materials often assume that African Americans are culturally homogeneous; however, research indicates that African Americans are heterogeneous in their attitudes, behaviors, and beliefs. The Black Identity Classification Scale (BICS) was designed as a telephone-administered tool to segment African American audiences into 16 ethnic identity types. The BICS was pretested using focus groups, telephone pretests, and a pilot study (n = 306). The final scale then was administered to 625 Black adults participating in a dietary intervention study, where it generally demonstrated good internal consistency reliability. The construct validity of the BICS also was explored by comparing participants' responses to culturally associated survey items. The distribution of the 16 BICS identity types in the intervention study is presented, as well as select characteristics for participants with core identity components. Although additional research is warranted, these findings suggest that the BICS has good psychometric properties and may be an effective tool for identifying African American audience segments.

Surveying adolescents enrolled in a regional health care delivery organization: mail and phone follow-up--what works at what cost?

PURPOSE: To describe the differential completion rates and cost of sequential methods for a survey of adolescents enrolled in a regional health care delivery organization. METHODS: Four thousand randomly selected enrollees were invited to complete a mailed health survey. Techniques used to boost response included (1) a follow-up mailing, (2) varying the appearance of the survey, (3) reminder calls, and (4) phone calls to obtain parent and child consent and to administer the survey. We evaluated the outcome and costs of these methods. RESULTS: Seven hundred eighty-three enrollees (20%) completed the first mailed survey and 521 completed the second, increasing the overall response rate to 33%. Completion was significantly higher among respondents who received only the plain survey than those receiving only the color survey (P < .001). Reminder calls boosted response by 8%. Switching to administration of the survey by phone boosted response by 20% to 61%. The cost per completed survey was $29 for the first mailing, $26 after both mailings, $42 for mailings and reminder calls, and $48 for adding phone surveys. CONCLUSION: The response to mailings and reminder calls was low and the cost was high, with decreasing yield at each step, although some low-cost techniques were helpful. Results suggest phone surveys may be most effective among similar samples of adolescents.

Women's decisions regarding tamoxifen for breast cancer prevention: responses to a tailored decision aid.

Tamoxifen reduces primary breast cancer incidence, yet causes serious side effects. To date, few women with increased breast cancer risk have elected to use tamoxifen for chemoprevention. The objective of the study was to determine women's knowledge of and attitudes toward tamoxifen following exposure to a tailored decision aid (DA). A total of 632 women with a 5-year risk of breast cancer > or = 1.66% (Mean = 2.56, range = 1.7-17.3) were recruited from two healthcare organizations. Participants viewed an online DA that informed them about their 5-year risk of breast cancer and presented individually tailored content depicting the risks/benefits of tamoxifen prophylaxis. Outcome measures included behavioral intentions (to seek additional information about tamoxifen, to talk to a physician about tamoxifen, and to take tamoxifen); knowledge; and perceived risks and benefits of tamoxifen. After viewing the DA, 29% of participants said they intended to seek more information or talk to their doctor about tamoxifen, and only 6% believed they would take tamoxifen. Knowledge was considerable, with 63% of women answering at least 5 of 6 knowledge questions correctly. Participants were concerned about the risks of tamoxifen, and many believed that the benefits of tamoxifen did not outweigh the risks. This study is the largest to date to test women's preferences for taking tamoxifen and one of the largest to have tested the impact of a tailored DA. After viewing the DA, women demonstrated good understanding of tamoxifen's risks and benefits, but most were not interested in taking tamoxifen for breast cancer chemoprevention.

Testing whether decision aids introduce cognitive biases: results of a randomized trial.

OBJECTIVE: Women at high risk of breast cancer face a difficult decision whether to take medications like tamoxifen to prevent a first breast cancer diagnosis. Decision aids (DAs) offer a promising method of helping them make this decision. But concern lingers that DAs might introduce cognitive biases. METHODS: We recruited 663 women at high risk of breast cancer and presented them with a DA designed to experimentally test potential methods of identifying and reducing cognitive biases that could influence this decision, by varying specific aspects of the DA across participants in a factorial design. RESULTS: Participants were susceptible to a cognitive bias - an order effect - such that those who learned first about the risks of tamoxifen thought more favorably of the drug than women who learned first about the benefits. This order effect was eliminated among women who received additional information about competing health risks. CONCLUSION: We discovered that the order of risk/benefit information influenced women's perceptions of tamoxifen. This bias was eliminated by providing contextual information about competing health risks. PRACTICE IMPLICATIONS: We have demonstrated the feasibility of using factorial experimental designs to test whether DAs introduce cognitive biases, and whether specific elements of DAs can reduce such biases.

Looking at research consent forms through a participant-centered lens: the PRISM readability toolkit.

Communicating in lay language is an underdeveloped skill among many researchers-a limitation that contributes to low readability among research consent forms and may hinder participant understanding of study procedures and risks. We present the Project to Review and Improve Study Materials (PRISM) and its centerpiece, the PRISM Readability Toolkit. The toolkit provides strategies for creating study materials that are readable and participant centered, focusing on consent forms but also addressing other participant materials. Based on plain language principles, this free resource includes a flexible menu of tools, such as an editing checklist, before and after examples, easy-to-read template language, and a list of alternative words. Among PRISM's ongoing goals is to test the toolkit with populations groups.

Challenges in researching racially sensitive topics in HMOs.

When research designed to close the disparities gap is conducted in real-world health care settings, unique sensitivities may arise, particularly when race is the focus of interventions. Researchers encountered this issue in the course of a randomized trial investigating the influence of ethnic identity (EI) among African American (AA) study participants. The study was conducted by the research programs at three health maintenance organizations (HMOs) and the University of Michigan Center for Health Communications Research, as described in this issue of the journal (Resnicow et al., 2009). This commentary describes the research partnership's concerns for the racially sensitive nature of the study and the precautions undertaken to mitigate them. The research study's experiences may be informative and insightful for health plans and research centers invested in health disparities research.

Tailoring a fruit and vegetable intervention on ethnic identity: results of a randomized study.

OBJECTIVE: Many targeted interventions have been developed and tested with African Americans (AA); however, AAs are a highly heterogeneous group. One characteristic that varies across AAs is Ethnic Identity (EI). Little research has been conducted on how to incorporate EI into the design of health messages and programs. DESIGN: We tested whether tailoring a print-based fruit and vegetable (F & V) intervention on EI would enhance program impact. AA adults were recruited from two integrated healthcare delivery systems and then randomized to receive three newsletters focused on F & V behavior change over three months. One set of newsletters was tailored only on demographic and social cognitive variables (control condition), whereas the other (experimental condition) was additionally tailored on EI. MAIN OUTCOME MEASURES: The primary outcome for the study was F & V intake, assessed at baseline and three months later using the composite of two brief self-report frequency measures. RESULTS: A total of 560 eligible participants were enrolled, of which 468 provided complete 3-month follow-up data. The experimental group increased their daily mean F & V intake by 1.1 servings compared to .8 servings in the control group (p = .13). Afrocentric experimental group participants showed a 1.4 increase in F & V servings per day compared to a .43 servings per day increase among Afrocentric controls (p < .05). CONCLUSIONS: Although the overall between-group effects were not significant, tailoring dietary messages on ethnic identity may improve intervention impact for some AA subgroups.

The role of engagement in a tailored web-based smoking cessation program: randomized controlled trial.

BACKGROUND: Web-based programs for health promotion, disease prevention, and disease management often experience high rates of attrition. There are 3 questions which are particularly relevant to this issue. First, does engagement with program content predict long-term outcomes? Second, which users are most likely to drop out or disengage from the program? Third, do particular intervention strategies enhance engagement? OBJECTIVE: To determine: (1) whether engagement (defined by the number of Web sections opened) in a Web-based smoking cessation intervention predicts 6-month abstinence, (2) whether particular sociodemographic and psychographic groups are more likely to have lower engagement, and (3) whether particular components of a Web-based smoking cessation program influence engagement. METHODS: A randomized trial of 1866 smokers was used to examine the efficacy of 5 different treatment components of a Web-based smoking cessation intervention. The components were: high- versus low-personalized message source, high- versus low-tailored outcome expectation, efficacy expectation, and success story messages. Moreover, the timing of exposure to these sections was manipulated, with participants randomized to either a single unified Web program with all sections available at once, or sequential exposure to each section over a 5-week period of time. Participants from 2 large health plans enrolled to receive the online behavioral smoking cessation program and a free course of nicotine replacement therapy (patch). The program included: an introduction section, a section focusing on outcome expectations, 2 sections focusing on efficacy expectations, and a section with a narrative success story (5 sections altogether, each with multiple screens). Most of the analyses were conducted with a stratification of the 2 exposure types. Measures included: sociodemographic and psychosocial characteristics, Web sections opened, perceived message relevance, and smoking cessation 6-months following quit date. RESULTS: The total number of Web sections opened was related to subsequent smoking cessation. Participants who were younger, were male, or had less formal education were more likely to disengage from the Web-based cessation program, particularly when the program sections were delivered sequentially over time. More personalized source and high-depth tailored self-efficacy components were related to a greater number of Web sections opened. A path analysis model suggested that the impact of high-depth message tailoring on engagement in the sequentially delivered Web program was mediated by perceived message relevance. CONCLUSIONS: Results of this study suggest that one of the mechanisms underlying the impact of Web-based smoking cessation interventions is engagement with the program. The source of the message, the degree of message tailoring, and the timing of exposure appear to influence Web-based program engagement.

Tailoring a fruit and vegetable intervention on novel motivational constructs: results of a randomized study.

BACKGROUND: Tailored health communications to date have been based on a rather narrow set of theoretical constructs. PURPOSE: This study was designed to test whether tailoring a print-based fruit and vegetable (F & V) intervention on relatively novel constructs from self-determination theory (SDT) and motivational interviewing (MI) increases intervention impact, perceived relevance, and program satisfaction. The study also aimed to explore possible user characteristics that may moderate intervention response. METHODS: African American adults were recruited from two integrated health care delivery systems, one based in the Detroit Metro area and the other in the Atlanta Metro area, and then randomized to receive three tailored newsletters over 3 months. One set of newsletters was tailored only on demographic and social cognitive variables (control condition), whereas the other (experimental condition) was tailored on SDT and MI principles and strategies. The primary focus of the newsletters and the primary outcome for the study was fruit and vegetable intake assessed with two brief self-report measures. Preference for autonomy support was assessed at baseline with a single item: "In general, when it comes to my health I would rather an expert just tell me what I should do". Most between-group differences were examined using change scores. RESULTS: A total of 512 (31%) eligible participants, of 1,650 invited, were enrolled, of which 423 provided complete 3-month follow-up data. Considering the entire sample, there were no significant between-group differences in daily F & V intake at 3 month follow-up. Both groups showed similar increases of around one serving per day of F & V on the short form and half a serving per day on the long form. There were, however, significant interactions of intervention group with preference for autonomy-supportive communication as well as with age. Specifically, individuals in the experimental intervention who, at baseline, preferred an autonomy-supportive style of communication increased their F & V intake by 1.07 servings compared to 0.43 servings among controls. Among younger controls, there was a larger change in F & V intake, 0.59 servings, than their experimental group counterparts, 0.29 servings. Conversely, older experimental group participants showed a larger change in F & V, 1.09 servings, than older controls, 0.48. CONCLUSION: Our study confirms the importance of assessing individual differences as potential moderators of tailored health interventions. For those who prefer an autonomy-supportive style of communication, tailoring on values and other motivational constructs can enhance message impact and perceived relevance.

Web-based smoking-cessation programs: results of a randomized trial.

BACKGROUND: Initial trials of web-based smoking-cessation programs have generally been promising. The active components of these programs, however, are not well understood. This study aimed to (1) identify active psychosocial and communication components of a web-based smoking-cessation intervention and (2) examine the impact of increasing the tailoring depth on smoking cessation. DESIGN: Randomized fractional factorial design. SETTING: Two HMOs: Group Health in Washington State and Henry Ford Health System in Michigan. PARTICIPANTS: 1866 smokers. INTERVENTION: A web-based smoking-cessation program plus nicotine patch. Five components of the intervention were randomized using a fractional factorial design: high- versus low-depth tailored success story, outcome expectation, and efficacy expectation messages; high- versus low-personalized source; and multiple versus single exposure to the intervention components. MEASUREMENTS: Primary outcome was 7 day point-prevalence abstinence at the 6-month follow-up. FINDINGS: Abstinence was most influenced by high-depth tailored success stories and a high-personalized message source. The cumulative assignment of the three tailoring depth factors also resulted in increasing the rates of 6-month cessation, demonstrating an effect of tailoring depth. CONCLUSIONS: The study identified relevant components of smoking-cessation interventions that should be generalizable to other cessation interventions. The study also demonstrated the importance of higher-depth tailoring in smoking-cessation programs. Finally, the use of a novel fractional factorial design allowed efficient examination of the study aims. The rapidly changing interfaces, software, and capabilities of eHealth are likely to require such dynamic experimental approaches to intervention discovery.

Understanding high-quality cancer care: a summary of expert perspectives.

BACKGROUND: The Institute of Medicine (IOM) report Crossing the Quality Chasm proposed 6 aims for high-quality healthcare: effective, safe, timely, efficient, equitable, and patient-centered, and emphasized care coordination. Through interviews with nationally recognized experts in healthcare quality, perspectives on barriers and facilitators to achieving these aims for cancer patients were elicited. METHODS: In all, 23 peer-nominated experts with diverse backgrounds in policy, healthcare, patient advocacy, and research were individually interviewed. They were asked about barriers and facilitators to achieving high-quality cancer care, and information technology or other innovations that might improve the quality of cancer diagnosis, treatment, and surveillance. Interviews were tape-recorded and transcribed. Two analysts independently reviewed and coded each transcript using ethnographic software to elucidate key themes. RESULTS: The major perceived barrier to providing high-quality cancer care was unnecessary variation in cancer care because of lack of standardization or adherence to guidelines during diagnosis, treatment, and surveillance. Additional barriers included insufficient teamwork and communication among multidisciplinary care teams, lack of patient awareness and empowerment, diagnostic delays during provider transitions, and excessive reimbursement for treatment. Experts suggested improving cancer patients' experiences by standardizing care, adhering to guidelines, and using "patient navigators" and an interoperable electronic medical record accessible to patients and providers at multiple facilities. CONCLUSIONS: Some of these solutions have been developed and tested, whereas others have not. It is hoped that these suggestions provide impetus for new research, accelerating progress toward achieving the IOM's vision for high-quality cancer care.

Insurance coverage and incentives for weight loss among adults with metabolic syndrome.

OBJECTIVE: To describe how insured adults with metabolic syndrome respond to various options for insurance coverage and financial incentives for weight management. METHODS AND PROCEDURES: Insured adults meeting the criteria for the metabolic syndrome were randomly identified through automated medical records and invited to participate in a telephone-based survey of the acceptability of various weight management programs-with different financial incentives and insurance coverage options-in a health maintenance organization. Multivariable logistic regression models were used to test the relationship between participant characteristics and the odds of being motivated by incentives. RESULTS: One hundred and fifty-three adults with the metabolic syndrome completed the survey (i.e., 79% of telephone contacts). A hypothetical increase in insurance coverage from 10 to 100% led to a threefold increase among women and a sevenfold increase among men in the proportion reporting they were "very interested" in enrolling in a weight management program within the next 30 days. Most participants (76% of women and 57% of men) supported a health plan-sponsored financial incentive program tied to weight loss, and 41% believed such a program would motivate them to lose weight. The mean financial incentive proposed for a 15-pound weight loss was $591 (median: $125). DISCUSSION: Although weight loss is an effective treatment for metabolic syndrome, standard health insurance rarely covers intensive behavioral treatment. The results of this study suggest that providing full insurance coverage and financial incentives for weight management increases the interest in participating in obesity treatment programs. Further research should determine how full coverage and incentives affect participation rates, long-term body weight changes, and costs.

Interest in an online smoking cessation program and effective recruitment strategies: results from Project Quit.

BACKGROUND: The Internet is a promising venue for delivering smoking cessation treatment, either as a stand-alone program or as an adjunct to pharmacotherapy. However, there is little data to indicate what percent of smokers are interested in receiving online smoking cessation services or how best to recruit smokers to Internet-based programs. OBJECTIVE: Using a defined recruitment sample, this study aimed to identify the percentage of smokers who expressed interest in or enrolled in Project Quit, a tailored, online, cognitive-behavioral support program offered with adjunctive nicotine replacement therapy patches. In addition, we examined the effectiveness of several individual-level versus population-level recruitment strategies. METHODS: Members from two large health care organizations in the United States were invited to participate in Project Quit. Recruitment efforts included proactive invitation letters mailed to 34533 likely smokers and reactive population-level study advertisements targeted to all health plan members (> 560000 adults, including an estimated 98000 smokers across both health care organizations). RESULTS: An estimated 1.6% and 2.5% of adult smokers from each health care organization enrolled in Project Quit. Among likely smokers who received proactive study invitations, 7% visited the Project Quit website (n = 2260) and 4% (n = 1273) were eligible and enrolled. Response rates were similar across sites, despite using different sources to assemble the invitation mailing list. Proactive individual-level recruitment was more effective than other forms of recruitment, accounting for 69% of website visitors and 68% of enrollees. CONCLUSIONS: Smokers were interested in receiving online smoking cessation support, even though they had access to other forms of treatment through their health insurance. Uptake rates for this program were comparable to those seen when smokers are advised to quit and are referred to other forms of smoking cessation treatment. In this sample, proactive mailings were the best method for recruiting smokers to Project Quit.