Helene McDowell

Use and Impact of eHealth System by Low-income Women With Breast Cancer

ABSTRACT This article is the second of a two-part series reporting on a population-based study intended to use an eHealth system to examine the feasibility of reaching underserved women with breast cancer (Gustafson, McTavish et al., Reducing the digital divide for low-income women with breast cancer, 2004; Madison Center for Health Systems Research and Analysis, University of Wisconsin; Comprehensive Health Enhancement Support System [CHESS]) and determine how they use the system and what impact it had on them. Participants included women recently diagnosed with breast cancer whose income was at or below 250% of poverty level and were living in rural Wisconsin (n = 144; all Caucasian) or Detroit (n = 85; all African American). Because this was a population-based study all 229 participants received CHESS. A comparison group of patients (n = 51) with similar demographics was drawn from a separate recently completed randomized clinical trial. Use rates (e.g., frequency and length of use as well as type of use) as well as impact on several dimensions of quality of life and participation in health care are reported. Low-income subjects in this study logged on and spent more time on CHESS than more affluent women in a previous study. Urban African Americans used information and analysis services more and communication services less than rural Caucasians. When all low-income women from this study are combined and compared with a low-income control group from another study, the CHESS group was superior to that control group in 4 of 8 outcome variables at both statistically and practically significant levels (social support, negative emotions, participation in health care, and information competence). When African Americans and Caucasians are separated the control groups sample size becomes 30 and 21 thus reducing power. Statistical significance is retained, however, in all four outcomes for Caucasians and in two of four for African Americans. Practical significance is retained for all four outcomes. We conclude that an eHealth system like CHESS will be used extensively and have a positive impact on low-income women with breast cancer.

Reducing the Digital Divide for Low-income Women With Breast Cancer: A Feasibility Study of a Population-Based Intervention

Abstract A fundamental challenge to helping underserved women and their families cope with breast cancer is providing them with easily accessible, reliable health care information and support. This is especially true for low-income families living in rural areas where resources are few and frequently distant as well as low-income families in urban areas where access to information and support can be complex and overwhelming. The Internet is one mechanism that has tremendous potential to help these families cope with breast cancer. This article describes a feasibility test of the potential for the National Cancer Institutes (NCIs) Cancer Information Service (CIS) to provide access to an Internet-based system that has been shown to improve quality of life for underserved breast cancer patients. The test was conducted in rural Wisconsin (low socioeconomic status [SES] Caucasian women) and in Detroit, Michigan (low SES African American women), and compares the effectiveness of several different dissemination strategies. Using these results we propose a model for how CIS telephone and partnership program services could efficiently disseminate such information and support systems. In doing so we believe that important steps can be taken to close the digital divide that separates low-income families from the resources they need to effectively face cancer. This is the first of two articles coming from this study. A companion article reports on an evaluation of the use and impact of this system on the women who were given access to it.

How Underserved Breast Cancer Patients Use and Benefit From eHealth Programs Implications for Closing the Digital Divide

This article consolidates insights from 15 years of research examining howthe medically underserved use and benefit from an eHealth program, the Comprehensive Health Enhancement Support System (CHESS). The authors outline results from early feasibility tests to determine if the underserved would use CHESS. Distinctive behaviors of underserved populations who have used CHESS are reported with a focus on how online health information and computer-mediated support groups are used. The article then reports on how the underserved benefit from using CHESS. Best practice recommendations for recruitment and training the underserved are offered, and implications for closing the digital divide are discussed.

Integrating addiction treatment into primary care using mobile health technology: protocol for an implementation research study

BackgroundHealthcare reform in the United States is encouraging Federally Qualified Health Centers and other primary-care practices to integrate treatment for addiction and other behavioral health conditions into their practices. The potential of mobile health technologies to manage addiction and comorbidities such as HIV in these settings is substantial but largely untested. This paper describes a protocol to evaluate the implementation of an E-Health integrated communication technology delivered via mobile phones, called Seva, into primary-care settings. Seva is an evidence-based system of addiction treatment and recovery support for patients and real-time caseload monitoring for clinicians.Methods/DesignOur implementation strategy uses three models of organizational change: the Program Planning Model to promote acceptance and sustainability, the NIATx quality improvement model to create a welcoming environment for change, and Rogers’s diffusion of innovations research, which facilitates adaptations of innovations to maximize their adoption potential. We will implement Seva and conduct an intensive, mixed-methods assessment at three diverse Federally Qualified Healthcare Centers in the United States. Our non-concurrent multiple-baseline design includes three periods — pretest (ending in four months of implementation preparation), active Seva implementation, and maintenance — with implementation staggered at six-month intervals across sites. The first site will serve as a pilot clinic. We will track the timing of intervention elements and assess study outcomes within each dimension of the Reach, Effectiveness, Adoption, Implementation, and Maintenance framework, including effects on clinicians, patients, and practices. Our mixed-methods approach will include quantitative (e.g., interrupted time-series analysis of treatment attendance, with clinics as the unit of analysis) and qualitative (e.g., staff interviews regarding adaptations to implementation protocol) methods, and assessment of implementation costs.DiscussionIf implementation is successful, the field will have a proven technology that helps Federally Qualified Health Centers and affiliated organizations provide addiction treatment and recovery support, as well as a proven strategy for implementing the technology. Seva also has the potential to improve core elements of addiction treatment, such as referral and treatment processes. A mobile technology for addiction treatment and accompanying implementation model could provide a cost-effective means to improve the lives of patients with drug and alcohol problems.Trial registrationClinicalTrials.gov (NCT01963234).

Implementing an mHealth system for substance use disorders in primary care: a mixed methods study of clinicians’ initial expectations and first year experiences

BackgroundMillions of Americans need but don’t receive treatment for substance use, and evidence suggests that addiction-focused interventions on smart phones could support their recovery. There is little research on implementation of addiction-related interventions in primary care, particularly in Federally Qualified Health Centers (FQHCs) that provide primary care to underserved populations. We used mixed methods to examine three FQHCs’ implementation of Seva, a smart-phone app that offers patients online support/discussion, health-tracking, and tools for coping with cravings, and offers clinicians information about patients’ health tracking and relapses. We examined (a) clinicians’ initial perspectives about implementing Seva, and (b) the first year of implementation at Site 1.MethodsPrior to staggered implementation at three FQHCs (Midwest city in WI vs. rural town in MT vs. metropolitan NY), interviews, meetings, and focus groups were conducted with 53 clinicians to identify core themes of initial expectations about implementation. One year into implementation at Site 1, clinicians there were re-interviewed. Their reports were supplemented by quantitative data on clinician and patient use of Seva.ResultsClinicians anticipated that Seva could help patients and make behavioral health appointments more efficient, but they were skeptical that physicians would engage with Seva (given high caseloads), and they were uncertain whether patients would use Seva. They were concerned about legal obligations for monitoring patients’ interactions online, including possible “cries for help” or inappropriate interactions. One year later at Site 1, behavioral health care providers, rather than physicians, had incorporated Seva into patient care, primarily by discussing it during appointments. Given workflow/load concerns, only a few key clinicians monitored health tracking/relapses and prompted outreach when needed; two researchers monitored the discussion board and alerted the clinic as needed. Clinician turnover/leave complicated this approach. Contrary to clinicians’ initial concerns, patients showed sustained, mutually supportive use of Seva, with few instances of misuse.ConclusionsResults suggest the value of (a) focusing implementation on behavioral health care providers rather than physicians, (b) assigning a few individuals (not necessarily clinicians) to monitor health tracking, relapses, and the discussion board, (c) anticipating turnover/leave and having designated replacements. Patients showed sustained, positive use of Seva.Trial registrationClinicalTrials.gov (NCT01963234).

The Role of the Family Environment and Computer-Mediated Social Support on Breast Cancer Patients' Coping Strategies

Despite the importance of family environment and computer-mediated social support (CMSS) for women with breast cancer, little is known about the interplay of these sources of care and assistance on patients’ coping strategies. To understand this relation, the authors examined the effect of family environment as a predictor of the use of CMSS groups as well as a moderator of the relation between group participation and forms of coping. Data were collected from 111 patients in CMSS groups in the Comprehensive Health Enhancement Support System “Living with Breast Cancer” intervention. Results indicate that family environment plays a crucial role in (a) predicting breast cancer patients participation in CMSS groups and (b) moderating the effects of use of CMSS groups on breast cancer patients’ coping strategies such as problem-focused coping and emotion-focused coping.

Mammography Screening: Gaps in Patient's and Physician's Needs for Shared Decision‐Making

As shared decision‐making increasingly influences screening mammography, understanding similarities and differences between patients and physician perspectives becomes crucially important. This study compares womens and physicians’ experiences of mammography shared decision‐making. Results reflect the critical gaps which exist between womens expectations and physicians’ confidence in shared decision‐making regarding screening mammography.

Online support: Impact on anxiety in women who experience an abnormal screening mammogram

OBJECTIVES To determine whether an online support tool can impact anxiety in women experiencing an abnormal mammogram. MATERIALS AND METHODS We developed an online support system using the Comprehensive Health Enhancement Support System (CHESS) designed for women experiencing an abnormal mammogram as a model. Our trial randomized 130 of these women to online support (the intervention group) or to a list of five commonly used Internet sites (the comparison group). Surveys assessed anxiety and breast cancer worry, and patient satisfaction at three important clinical time points: when women were notified of their abnormal mammogram, at the time of diagnostic imaging, and at the time of biopsy (if biopsy was recommended). RESULTS Study participants in the intervention group showed a significant decrease in anxiety at the time of biopsy compared to the comparison group (p = 0.017). However, there was no significant difference in anxiety between the intervention group and the comparison group at the time of diagnostic work-up. We discontinued assessment of patient satisfaction after finding that many women had substantial difficulty answering the questions that referenced their physician, because they did not understand who their physician was for this process of care. CONCLUSION The combination of the inability to identify the physician providing care during the mammography work-up and anxiety effects seen only after an interaction with the breast imaging team may indicate that online support only decreases the anxiety of women in concert with direct interpersonal support from the healthcare team.

Key Elements of Mammography Shared Decision-Making: a Scoping Review of the Literature

BackgroundNew guidelines recommend shared decision-making (SDM) for women and their clinician in consideration of breast cancer screening, particularly for women ages 35–50 where guidelines for routine mammography are controversial. A number of models offer general guidelines for SDM across clinical practice, yet they do not offer specific guidance about conducting SDM in mammography. We conducted a scoping review of the literature to identify the key elements of breast cancer screening SDM and synthesize these key elements for utilization by primary care clinicians.MethodsThe Cochrane Database of Systematic Reviews; Cumulative Index to Nursing and Allied Health Literature (CINAHL Plus); PsycInfo, PubMed (MEDLINE), Scopus, and SocIndex databases were searched. Inclusion criteria were original studies from peer-reviewed publications (from 2009 or later) reporting breast cancer screening (mammography), medical decision-making, and patient-centered care. Study populations needed to include female patients 18+ years of age facing a real-life breast cancer screening decision. Article findings were specific to shared decision-making and/or use of a decision aid. Data extracted includes study design, population, setting, intervention, and critical findings related to breast cancer screening SDM elements. Scoping analysis includes descriptive analysis of study features and content analysis to identify the SDM key elements.ResultsTwenty-four articles were retained. Three thematic categories of key elements emerged from the extracted elements: information delivery/patient education (specific content and delivery modes), interpersonal clinician-patient communication (aspects of interpersonal relationship impacting SDM), and framework of the decision (sociocultural factors beyond direct SDM deliberation). A number of specific breast cancer screening SDM elements relevant to primary care clinical practice are delineated.DiscussionThe findings underscore the importance of the relationship between the patient and clinician and the necessity of spelling out each step in the SDM process. The clinician needs to be explicit in telling a woman that she has a choice about whether to get a mammogram and the benefits and harms of screening mammography. Finally, clinicians need to be aware of sociocultural factors that can influence their relationships and their patients’ decision-making processes and attempt to identify and address these factors.