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1.  Developing and validating a model to predict the success of an IHCS implementation: the Readiness for Implementation Model 
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.
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.
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.
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.
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.
The RIM needs to be empirically evaluated in institutions adopting IHCS and sustaining the system in the long term.
PMCID: PMC3000759  PMID: 20962135
2.  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 
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.
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.
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.
: 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).
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.
PMCID: PMC3056530  PMID: 21169163
Internet; personal health records; health information exchange; consumer perceptions and utilization; demography; health care surveys; health communication trend
3.  Preventing Postpartum Smoking Relapse Among Inner City Women: Development of a Theory-Based and Evidence-Guided Text Messaging Intervention 
JMIR Research Protocols  2014;3(2):e20.
Underserved women are at high risk for smoking relapse after childbirth due to their unique socioeconomic and postpartum stressors and barriers. Mobile text messaging technology allows delivery of relapse prevention programs targeted to their personal needs over time.
To describe the development of a social-cognitive theory-based and evidence-guided text messaging intervention for preventing postpartum smoking relapse among inner city women.
Guided by the cognitive-social health information processing framework, user-centered design, and health communication best practices, the intervention was developed through a systematic process that included needs assessment, followed by an iterative cycling through message drafting, health literacy evaluation and rewriting, review by target community members and a scientific advisory panel, and message revision, concluding with usability testing.
All message content was theory-grounded, derived by needs assessment analysis and evidence-based materials, reviewed and revised by the target population, health literacy experts, and scientific advisors. The final program, “Txt2Commit,” was developed as a fully automated system, designed to deliver 3 proactive messages per day for a 1-month postpartum smoking relapse intervention, with crave and lapse user-initiated message functions available when needed.
The developmental process suggests that the application of theory and best practices in the design of text messaging smoking cessation interventions is not only feasible but necessary for ensuring that the interventions are evidence based and user-centered.
PMCID: PMC4004157  PMID: 24698804
smoking relapse intervention; low-income women; mHealth; text messaging
4.  Implementation of a Theory-based, Non-clinical Patient Navigator Program to Address Barriers in an Urban Cancer Center Setting 
Cancer patients face a myriad of psychosocial and practical issues. Especially challenging is the time from an initial diagnosis to the onset of treatment and patient navigation services are important to guide patients, especially underserved populations, through this maze of uncertainty. Here we report on the Pennsylvania Patient Navigator Demonstration Project (PaPND) designed to evaluate the acceptability, feasibility, and impact of a culturally and linguistically appropriate non-clinical navigator program. The development of the project, based on behavioral theory and community-based participatory research principles, is described. Forty-four cancer patients from diverse backgrounds participated, which included a baseline assessment, navigation services, and a four week and twelve week follow-up assessment. On average, participants experienced 1.8 barriers with transportation and insurance issues the most common barriers. The majority (56%) of the barriers required more than an hour of the navigator’s time to address, with insurance, transportation and caregiver/support issues requiring the most time. Overall patients were fairly satisfied with the navigation services. The findings showed improvement patient’s stress-related thoughts, cognition (understanding of their disease), expectancies and beliefs or values/goals, as well as self-efficacy of managing cancer related issues from the baseline to follow-up assessments. The evaluation results suggest that providing and connecting cancer patients to appropriate information to improve their understanding of their diagnosis and recommended treatments needs to be addressed, and where the integration of non-clinical and clinical navigation is essential. In addition, more attention to the assessment of psychosocial issues, such as the patients’ emotional worries, and more comprehensive training in these areas would enhance navigation programs.
PMCID: PMC4222195  PMID: 25383260
cancer; non-clinical navigation; medically underserved; urban community; case management
5.  Psychosocial Barriers to Follow-up Adherence After an Abnormal Cervical Cytology Test Result Among Low-Income, Inner-City Women 
Low-income, inner-city women bear a disproportionate burden of cervical cancer in both incidence and mortality rates in the United States, largely because of low adherence to follow-up recommendations after an abnormal cervical cytology result in the primary care setting. The goals of the present study were to delineate the theory-based psychosocial barriers underlying these persistent low follow-up rates and their sociodemographic correlates.
Guided by a well-validated psychosocial theory of health behaviors, this cross-sectional, correlational study assessed the barriers to follow-up adherence among underserved women (N = 210) who received an abnormal cervical cytology result. Participants were recruited through an inner-city hospital colposcopy clinic, and were assessed by telephone prior to the colposcopy appointment.
Participants were largely of African American race (82.2%), lower than high school completion education (58.7%), single, never married (67.3%), and without full-time employment (64.1%). Knowledge barriers were most often endorsed (68%, M = 3.22), followed by distress barriers (64%, M = 3.09), and coping barriers (36%, M = 2.36). Forty-six percent reported more than one barrier category. Less education and being unemployed were correlated with higher knowledge barriers (P < .0001 and P < .01, respectively) and more coping barriers (P < .05 and P < .05, respectively). Women who were younger than 30 years displayed greater distress barriers (P < .05).
In the primary care setting, assessing and addressing knowledge and distress barriers after feedback of an abnormal cervical cytology result may improve adherence to follow-up recommendations. The use of structured counseling protocols and referral to navigational and other resources may facilitate this process and thereby reduce disparities in cervical cancer.
PMCID: PMC4169747  PMID: 24718518
cervical risk; psychosocial barriers; low-income women; adherence
6.  Responding to a Significant Recruitment Challenge within Three Nationwide Psycho-Educational Trials for Cancer Patients 
When faced with a significant recruitment challenge for three nationwide psycho-educational trials targeting prostate and breast cancer patients, the Cancer Information Service Research Consortium initiated outreach efforts to increase accrual. Recruitment is reported by major outreach strategy to inform the use of similar campaigns, either as primary recruitment efforts or to supplement “in-reach” recruitment within oncology settings.
During a 33-month period, recruitment was tracked from the National Cancer Institute’s Cancer Information Service (CIS), the American Cancer Society (ACS), Dr. Susan Love Research Foundation’s Love/Avon Army of Women (AOW), Internet advertising, press releases, radio/television interviews, recruitment materials in community venues, and outreach to churches and cancer support organizations.
Across projects, the majority (89%) of recruited participants (N = 2,134) was obtained from the CIS (n = 901, 19 months of recruitment), AOW (n = 869, 18 months), and ACS (n = 123, 12 months). Other efforts showed minimal gain in recruitment.
Cancer information programs (e.g., CIS, ACS) and registries of individuals willing to participate in cancer-related research (e.g., AOW) can represent exceptional resources for outreach recruitment of cancer patients, especially when the eligibility criteria are highly restrictive. However, these resources do not yield samples representative of the larger population of adults diagnosed with cancer, and conclusions from such trials must be tempered accordingly.
Implications for cancer survivors
Inadequate recruitment to randomized controlled trials limits the creation of useful interventions for cancer survivors. By enrolling in cancer registries and taking part in research, cancer survivors can contribute to the development of effective resources for the survivor population.
PMCID: PMC3737366  PMID: 23595235
cancer; accrual; recruitment; randomized controlled trial; psychoeducational; survivorship
7.  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.
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.
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.
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.
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.
PMCID: PMC3852173  PMID: 24007767
Cervical cancer screening; Follow up adherence; Tailored counseling
8.  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.
PMCID: PMC3825252  PMID: 24212170
Smoking cessation; pregnancy; postpartum; counseling adherence; counseling retention; intervention delivery
9.  Evaluation of the efficacy and usability of NCI’s Facing Forward booklet in the cancer community setting 
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.
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.
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.
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.
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.
PMCID: PMC3626437  PMID: 23229087
Survivorship; Cancer control; Psychosocial interventions; Facing Forward
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.
PMCID: PMC3590014  PMID: 18662420
Caregiver Needs; End of Life; Cancer; Palliative Care; Bereavement
11.  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.
PMCID: PMC3466054  PMID: 23055657
12.  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.
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.
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.
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.
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.
PMCID: PMC3419388  PMID: 22770812
Patient–provider communication; Web-based patient education; Formative evaluation; Usability testing; Breast cancer survivorship
13.  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.
PMCID: PMC3197930  PMID: 21756124
breast and ovarian cancer risk; cluster analysis; cognitive profiles; genetic testing; psychological distress
14.  Needs Assessment for cancer patients and their families 
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.
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.
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.
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.
PMCID: PMC394345  PMID: 14987334

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