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1.  Consumers’ Perceptions About and Use of the Internet for Personal Health Records and Health Information Exchange: Analysis of the 2007 Health Information National Trends Survey 
Background
Personal health records (PHRs) and the sharing of health information through health information exchange (HIE) have been advocated as key new components in the effective delivery of modern health care. It is important to understand consumer attitudes toward utilization of PHRs and HIE to evaluate the public’s willingness to adopt these new health care tools.
Objective
The purpose of this study was to examine consumer attitudes toward PHRs and their health care providers’ use of HIE, as well as to evaluate consumer use of the Internet for tracking PHRs.
Methods
Analysis of data from the 2007 iteration of the Health Information National Trends Study (HINTS, N=7674) was conducted using multivariate logistic regression to identify predictors of consumer (1) appraisal of PHRs, (2) appraisal of health care provider use of HIE, and (3) use of the Internet for tracking PHRs.
Results
: Approximately 86% of US adults rated electronic access to their PHRs as important. However, only 9% of them used the Internet for tracking PHRs. Those who rated electronic access to their PHRs as important were more likely to be Hispanic (odds ratio [OR] = 1.34, 95% confidence interval [CI] 1.04 - 1.72) and Internet users (OR = 1.27, 95% CI = 1.02 - 1.57) and less likely to be age 65 and above (OR = 0.50, 95% CI = 0.38 - 0.67) or individuals whose doctors always ensured their understanding of their health (OR = 0.62, 95% CI = 0.49 – 0.78). Those who rated HIE as important were more likely to be 45 to 54 years of age (OR = 1.46, 95% CI = 1.03 - 2.08), 55 to 64 years of age (OR = 1.83, 95% CI = 1.32 - 2.53), or 65 and above (OR = 1.76, 95% CI = 1.27 - 2.43) and less likely to be women (OR = 0.80, 95% CI = 0.68 - 0.95) or individuals who perceive their health information as not safely guarded by their doctors (OR = 0.53, 95% CI = 0.40 - 0.69). Among Internet users, those who used the Internet to track their PHRs were more likely to be college graduates (OR = 1.84, 95% = 1.32 - 2.59) or to have completed some college courses (OR = 1.46, 95% CI = 1.02 - 2.11), to be Hispanic (OR = 1.92, 95% CI = 1.23 - 2.98), or to be individuals with health care provider access (OR = 1.90, 95% CI = 1.21 - 2.97). Women were less likely to use the Internet for tracking PHRs than men (OR = 0.78, 95% CI = 0.61 - 1.00).
Conclusions
Despite widespread positive appraisal of electronic access to PHRs as important, Internet use for tracking PHRs remains uncommon. To promote PHR adoption, the digital divide associated with the gap in health literacy must be improved, and cultural issues and the doctor-patient relationship need to be studied. Further work also needs to address consumer concerns regarding the security of HIE.
doi:10.2196/jmir.1668
PMCID: PMC3056530  PMID: 21169163
Internet; personal health records; health information exchange; consumer perceptions and utilization; demography; health care surveys; health communication trend
2.  Tailored telephone counseling to improve adherence to follow-up regimens after an abnormal pap smear among minority, underserved women 
Patient education and counseling  2013;93(3):10.1016/j.pec.2013.08.008.
Objective
The present study explored the impact of a tailored telephone counseling intervention on increasing follow-up adherence after an abnormal Pap smear result among low-income, minority women, which may reduce cervical cancer disparity.
Methods
Participants (N = 211) were randomly assigned to receive: (1) a telephone reminder that included an assessment of barriers to adherence, as well as counseling tailored to the barriers elicited; (2) telephone reminder and barriers assessment, followed by a mailed home tailored barriers print brochure; or (3) enhanced standard care comprising telephone reminder and barriers assessment. Assessments were obtained at initial contact and 1-week later, as well as at 6- and 12-months after the initial colposcopy.
Results
The telephone counseling group showed greater adherence to follow-up recommendations than did the combined other two groups (p < 0.05). For the initial colposcopy, tailored telephone barriers counseling was more effective among women with a high school education or less.
Conclusion
Tailored telephone barriers counseling improves adherence to initial colposcopy, as well as to longer-term medical follow-up, among low-income, inner-city women.
Practice Implications
Dissemination of barriers counseling into ongoing telephone reminder calls and contacts may decrease disparities in cancer outcomes, especially among women with less than postsecondary education.
doi:10.1016/j.pec.2013.08.008
PMCID: PMC3852173  PMID: 24007767
Cervical cancer screening; Follow up adherence; Tailored counseling
3.  Predictors of Smoking Cessation Counseling Adherence in a Socioeconomically Disadvantaged Sample of Pregnant Women 
Journal of health care for the poor and underserved  2012;23(3):10.1353/hpu.2012.0096.
Implementing and evaluating smoking cessation interventions in underserved populations has been found difficult due to high rates of non-adherence to the prescribed protocol. To understand better the barriers to cessation participation, we studied low-income inner-city pregnant women who were enrolled in either a standard or highly intensive quit smoking counseling program. The results showed that 1) in the prenatal phase, non-attendance was predicted by a greater number of cigarettes smoked per day; 2) in the postpartum follow-up phase, non-attendance was predicted by lower educational level and higher self-efficacy for quitting smoking; and 3) participants with more children living at home were at increased risk of rescheduling the postpartum follow-up session. These findings suggest that innovative delivery strategies are needed more effectively to assess and address risk factors for non-adherence to smoking cessation trials among underserved minority pregnant/postpartum smokers.
doi:10.1353/hpu.2012.0096
PMCID: PMC3825252  PMID: 24212170
Smoking cessation; pregnancy; postpartum; counseling adherence; counseling retention; intervention delivery
4.  CAREGIVERS’ DIFFERING NEEDS ACROSS KEY EXPERIENCES OF THE ADVANCED CANCER DISEASE TRAJECTORY 
Palliative & supportive care  2008;6(3):265-272.
Familial caregivers are providing increasing amounts of care to advanced cancer patients. Increased understanding of caregivers’ needs is vital in providing necessary support to lessen caregiver burden and morbidity. Current literature has identified caregiver and patient needs at broad stages of the cancer trajectory; however, such broad stages may be too general to inform a practice of targeting specific interventions when they have the greatest utility. This study examines a variety of particular needs across a number of more discrete illness-related transition experiences specifically in the advanced cancer disease trajectory. One hundred fifty-nine female informal caregivers of people with advanced cancer completed a needs assessment survey. Analyses of these cross-sectional retrospective-report data reveal that cancer caregiver needs vary across specific key experiences occurring within the broader stages of illness identified by current literature. Furthermore, caregivers have unique needs during bereavement. While the sample characteristics are demographically limited, this study provides preliminary evidence that the broad stages are not specific enough increments for effectively examining caregiver needs, and supports the need for more precise distribution of cancer-related information at more discrete times in the illness course.
doi:10.1017/S1478951508000400
PMCID: PMC3590014  PMID: 18662420
Caregiver Needs; End of Life; Cancer; Palliative Care; Bereavement
5.  From Diagnosis to Death: A Case Study of Coping With Breast Cancer as Seen Through Online Discussion Group Messages 
To understand the underlying psychosocial reactions against the unfolding of medical events that announce the disease progression, the objective of this analysis was to identify the patterns of online discussion group message themes in relation to the medical timeline of one woman's breast cancer trajectory. 202 messages posted by Darlene (our studied case) were analyzed by 2 independent coders using a grounded theory approach. The findings suggest that the pattern of messages was clearly correlated with distress-inducing events. The most frequent interaction theme was about building friendship with peers through communication of encouragement, validation, appreciation, and life sharing. Narratives of medical progression were constantly updated to identify similarities with peers. Family issues were increasingly raised at the end of life.
doi:10.1111/j.1083-6101.2011.01542.x
PMCID: PMC3466054  PMID: 23055657
6.  The development and preliminary testing of a multimedia patient–provider survivorship communication module for breast cancer survivors 
Patient education and counseling  2012;88(2):344-349.
Objective
This paper describes the development of a theory-guided and evidence-based multimedia training module to facilitate breast cancer survivors’ preparedness for effective communication with their health care providers after active treatment.
Methods
The iterative developmental process used included: (1) theory and evidence-based content development and vetting; (2) user testing; (3) usability testing; and (4) participant module utilization.
Results
Formative evaluation of the training module prototype occurred through user testing (n = 12), resulting in modification of the content and layout. Usability testing (n = 10) was employed to improve module functionality. Preliminary web usage data (n = 256, mean age = 53, 94.5% White, 75% college graduate and above) showed that 59% of the participants accessed the communication module, for an average of 7 min per login.
Conclusion
The iterative developmental process was informative in enhancing the relevance of the communication module. Preliminary web usage results demonstrate the potential feasibility of such a program.
Practice implications
Our study demonstrates survivors’ openness to the use of a web-based communication skills training module and outlines a systematic iterative user and interface program development and testing process, which can serve as a prototype for others considering such an approach.
doi:10.1016/j.pec.2012.02.003
PMCID: PMC3419388  PMID: 22770812
Patient–provider communication; Web-based patient education; Formative evaluation; Usability testing; Breast cancer survivorship
7.  Developing and validating a model to predict the success of an IHCS implementation: the Readiness for Implementation Model 
Objective
To develop and validate the Readiness for Implementation Model (RIM). This model predicts a healthcare organization's potential for success in implementing an interactive health communication system (IHCS). The model consists of seven weighted factors, with each factor containing five to seven elements.
Design
Two decision-analytic approaches, self-explicated and conjoint analysis, were used to measure the weights of the RIM with a sample of 410 experts. The RIM model with weights was then validated in a prospective study of 25 IHCS implementation cases.
Measurements
Orthogonal main effects design was used to develop 700 conjoint-analysis profiles, which varied on seven factors. Each of the 410 experts rated the importance and desirability of the factors and their levels, as well as a set of 10 different profiles. For the prospective 25-case validation, three time-repeated measures of the RIM scores were collected for comparison with the implementation outcomes.
Results
Two of the seven factors, ‘organizational motivation’ and ‘meeting user needs,’ were found to be most important in predicting implementation readiness. No statistically significant difference was found in the predictive validity of the two approaches (self-explicated and conjoint analysis). The RIM was a better predictor for the 1-year implementation outcome than the half-year outcome.
Limitations
The expert sample, the order of the survey tasks, the additive model, and basing the RIM cut-off score on experience are possible limitations of the study.
Conclusion
The RIM needs to be empirically evaluated in institutions adopting IHCS and sustaining the system in the long term.
doi:10.1136/jamia.2010.005546
PMCID: PMC3000759  PMID: 20962135
8.  The Identification of Cognitive Profiles among Women Considering BRCA1/2 Testing through the Utilization of Cluster Analytic Techniques 
Psychology & health  2011;26(10):1327-1343.
Based on the Cognitive-Social Health Information Processing model, we identified cognitive profiles of women at risk for breast and ovarian cancer. Prior to genetic counseling, participants (N = 171) completed a study questionnaire concerning their cognitive and affective responses to to being at genetic risk. Using cluster analysis, four cognitive profiles were generated: (a) high perceived risk/low coping; (b) low value of screening/high expectancy of cancer; (c) moderate perceived risk/moderate efficacy of prevention/low informativeness of test result; and (d) high efficacy of prevention/high coping. The majority of women in clusters one, two and three were unaffected, whereas cluster four consisted almost entirely of affected women. Women in cluster one had the highest number of affected relatives and experienced higher levels of distress than women in the other three clusters. These results highlight the need to consider the psychological profile of women undergoing genetic testing when designing counseling interventions and messages.
doi:10.1080/08870446.2010.521938
PMCID: PMC3197930  PMID: 21756124
breast and ovarian cancer risk; cluster analysis; cognitive profiles; genetic testing; psychological distress
9.  Needs Assessment for cancer patients and their families 
Background
The assessment of needs for cancer care is a critical step in providing high quality care and achieving cancer patients' and families' satisfaction. Instruments can be used to assess needs and guide cancer care planning. This study discusses the importance of the needs assessment, relationships between needs, satisfaction and quality of life; and reviews the assessment instruments of needs experienced by cancer patients and their families.
Methods
A systematic search was conducted in MEDLINE and CANCERLIT data bases. Instruments were evaluated based on their conceptual and measurement models as well as their demonstrated reliability and validity. The authors also sought information pertaining to instruments' burden of administration and responsiveness. Measures compromised by a lack of published psychometric description were not included.
Results
This search identified 17 patient needs assessment instruments and seven family needs assessment instruments. The development and psychometric proprieties of most of these instruments were well documented. However, data on their responsiveness and burden of administration were scarce.
Conclusions
Each selected instrument meets some but not all of our criteria for validity, reliability, responsiveness and burden. It is questionable whether any instrument can be developed meeting all the requirements. However, there is still a need to continue researching and developing needs assessment instruments leading to effective intervention and improving quality of cancer care.
doi:10.1186/1477-7525-2-11
PMCID: PMC394345  PMID: 14987334
10.  Evaluation of the efficacy and usability of NCI’s Facing Forward booklet in the cancer community setting 
Introduction
The NCI developed the print-based educational brochure, Facing Forward, to fill a gap in helping cancer patients meet the challenges of transitioning from active treatment to survivorship; however, little research has been conducted on its efficacy.
Purpose
The aims of this study were to evaluate the efficacy of Facing Forward in promoting the uptake of recommended behaviors (e.g., ways to manage physical changes) and to explore its usability.
Methods
At the last treatment appointment, early-stage breast, prostate, colorectal, and thoracic cancer patients (N=340) recruited from community clinical oncology practices and an academic medical center completed a baseline assessment and were randomized to receive either Facing Forward (n=175) or an attention control booklet about the NCI’s Cancer Information Service (n=165). Patients completed follow-up assessments at 8 weeks and 6 months post-baseline.
Results
The reported uptake of recommended stress management behaviors was greater among intervention than control participants at both 8 weeks post-baseline (p= 0.016) and 6 months post-baseline (p=0.017). At 8 weeks post-baseline, the intervention control group difference was greater among African-American than Caucasian participants (p<0.03) and significant only among the former (p< 0.003); attendance at a cancer support group was also greater among the intervention than control group participants (p< 0.02). There were no significant intervention control group differences in the reported uptake of recommended behaviors in three other categories (p>0.025). Intervention participants rated Facing Forward as understandable and helpful and indicated a high level of intention to try the behaviors recommended.
Conclusions
Facing Forward can enhance early-stage survivors’ reported ability to manage stress and increase support group use during the reentry period.
Implications for cancer survivors
Facing Forward can help survivors meet the challenges of the reentry period.
doi:10.1007/s11764-012-0245-7
PMCID: PMC3626437  PMID: 23229087
Survivorship; Cancer control; Psychosocial interventions; Facing Forward

Results 1-10 (10)