Ilene L. Hollin

A review of the use of mobile phone text messaging in clinical and healthy behaviour interventions.

We reviewed the literature on the use of text messaging for clinical and healthy behaviour interventions. Electronic databases were searched in December 2009 using keywords related to text messaging and health interventions. The final review included 24 articles. Of those, seven covered medication adherence, eight discussed clinical management and nine reported on health-related behaviour modification. Sixteen were randomized controlled trials (RCT), five were non-controlled pre-post comparison studies and three were feasibility pilots not reporting a behavioural outcome. The frequency of messaging ranged from multiple messages daily to one message per month. Among the 16 RCTs, 10 reported significant improvement with interventions and six reported differences suggesting positive trends. Text messaging received good acceptance and showed early efficacy in most studies. However, the evidence base is compromised by methodological limitations and is not yet conclusive.

Developing a Patient-Centered Benefit-Risk Survey: A Community-Engaged Process.

OBJECTIVES To provide a community-engaged process to inform the design of a stated-preferences experiment. The process involved integrating patients and caregivers of people with Duchenne/Becker muscular dystrophy, advocates, clinicians, and the sponsor in conceptualizing and developing a benefit-risk survey on the basis of phase III trial results. METHODS Our community-engagement process for the development of a stated-preference survey included a set of five guiding principles with a foundation in the principles of community-engaged research. Engagement efforts were carried out through an informal network of three committees. Members of the leadership, stakeholder, and review committees comprised patients, caregivers, clinicians, advocacy leadership, and industry representatives. RESULTS Committee members participated in 15 hours of formal engagement including interviews and conference calls that ranged from 45 to 90 minutes, plus additional less-formal ad hoc communication. Committees comprised 20 individuals across three committees including adults with DMD (n = 6), parents of children with DMD (n = 6), clinicians (n = 3), members of research and advocacy organizations (n = 4), and an industry representative (n = 1). Community engagement informed attribute selection, survey length, word choice, and eligibility criteria. Challenges in the process included managing diverse stakeholder perspectives, time requirements, and the inherent tension between outcomes used in clinical trials versus attributes that correspond to patient- and family-relevant outcomes. CONCLUSIONS We demonstrated how community engagement can successfully influence study design to support the design of a relevant survey instrument that is ethical, acceptable, meaningful to the community, and enhances patient-centered benefit-risk assessment for regulatory decision making.

Prioritizing Parental Worry Associated with Duchenne Muscular Dystrophy Using Best-Worst Scaling

Duchenne muscular dystrophy (DMD) is a progressive, fatal pediatric disorder with significant burden on parents. Assessing disease impact can inform clinical interventions. Best-worst scaling (BWS) was used to elicit parental priorities among 16 short-term, DMD-related worries identified through community engagement. Respondents viewed 16 subsets of worries, identified using a balanced, incomplete block design, and identified the most and least worrying items. Priorities were assessed using best-worst scores (spanning +1 to −1) representing the relative number of times items were endorsed as most and least worrying. Independent-sample t-tests compared prioritization of parents with ambulatory and non-ambulatory children. Participants (n = 119) most prioritized worries about weakness progression (BW score = 0.64) and getting the right care over time (BW = 0.25). Compared to parents of non-ambulatory children, parents of ambulatory children more highly prioritized missing treatments (BW = 0.31 vs. 0.13, p < 0.001) and being a good enough parent (BW = 0.06 vs. −0.08, p = 0.010), and less prioritized child feeling like a burden (BW = −0.24 vs. −0.07, p < 0.001). Regardless of child’s disease stage, caregiver interventions should address the emotional impact of caring for a child with a progressive, fatal disease. We demonstrate an accessible, clinically-relevant approach to prioritize disease impact using BWS, which offers an alternative to the use of traditional rating/ranking scales.

Patient-centered benefit-risk assessment in Duchenne Muscular Dystrophy

This study quantified caregiver and patient preferences for a therapeutic agent with demonstrated pulmonary benefits for Duchenne muscular dystrophy (DMD). Caregiver and patient differences were also explored.

How will we know if it's working? A multi-faceted approach to measuring usability of a specialty-specific electronic medical record.

The most effective use of electronic medical records (EMRs) will result from wide-scale adoption and appropriate use of the technology—two factors that rely heavily on a system’s usability. We conducted a qualitative and quantitative usability assessment of an EMR developed specifically for treating the HIV/AIDS patient population. The purpose of this study was to inform developers on how to prioritize resources for their impending software rebuild initiative and to evaluate a dual methodology consisting of both quantitative and qualitative components. The results indicated that the methodology was valid, although there were some variations recommended for future usability assessments of EMRs. The study also underscored the need to assess usability based on user feedback and to employ multiple methods to elicit information; this research revealed many insights into the software that contradicted initial assumptions and also found that asking questions in multiple ways yielded more complete feedback.

A Scoping Review of Healthcare Costs for Patients with Cystic Fibrosis.

BackgroundCystic fibrosis (CF), one of the most common life-shortening genetic diseases, has no cure, but people living with it have seen improvements in their health and survival. The rising life expectancy and increased availability of treatment options has likely increased the lifetime costs of people living with CF. In addition, a recent drug approval for a therapy that targets the cause of the disease is one of the most expensive drugs worldwide. In light of these circumstances, it is important to have an updated understanding of the costs of CF therapy and management. This study aims to determine the extent of available literature that quantifies CF costs.MethodsWe used a scoping review framework to identify the sources and types of evidence available to determine the costs of CF therapy and management compared to the general population or a comparable population of people with other complex chronic conditions. We searched 14 databases for peer-reviewed studies and grey literature published in English since 1998. The search was conducted in August 2013 and updated in October 2014.ResultsWe identified 28 studies that estimated overall, general CF costs. Of these, three studies compare CF costs to healthcare costs of a general population and only one of those provides a direct comparison of CF costs to the general population in order to calculate the incremental cost associated with CF. We estimate there are 98 systematic reviews that quantify the costs of comparable conditions and potentially provide a comparison group for people with CF.ConclusionsThere is evidence available that attempts to quantify overall, general healthcare costs of people with CF, although much of it is outdated. However, there is much less evidence available that provides a comparison of these costs with either the general population or people with comparable conditions.

Innovation spaces: six strategies to inform health care.

Innovation remains an understudied resource within health care. Furthermore, the goals of US health care reform make innovation vitally important, while the time and resource limitations characteristic of health care make new strategies for innovation both necessary and potentially highly meaningful. The purpose of this study was to examine strategies for innovation in various industries and draw lessons for improving innovation in health care. This qualitative study began with literature research that provided a framework for discussion and identified a recurrent challenge in innovation: balancing the freedom to be creative with the need for structured management of ideas. Researchers then identified leading innovative companies and conducted phone interviews with innovation officers and other experts about their strategies for addressing the major innovation challenge. This article breaks out innovation strategies into 6 categories (dedicated times, formal teams, outside ideas, idea-sharing platforms, company/job goals, and incentives) and evaluates them for levels of control, yield, and pervasiveness. Based on this analysis, recommendations are offered for improving innovation in health care, calling for employee time allocated to innovation, dedicated innovation teams, and the incorporation of outside ideas.

Care Management to Reduce Disparities and Control Hypertension in Primary Care

Background: Project ReD CHiP (reducing disparities and controlling hypertension in primary care) care management was a clinic-based intervention that aimed to improve blood pressure control through improved care coordination and provide self-management support to patients from racially and socioeconomically. Objective: To evaluate the cost-effectiveness of ReD CHiP care management versus standard care to treat hypertension in diverse communities. Research Design: Microsimulation model from a health care sector perspective over 15 years. We used the published literature to inform our model including the ReD CHiP trial and the age-specific and race-specific cardiovascular disease risk equations. Deterministic and probabilistic sensitivity analyses were conducted to assess the uncertainty. Subjects: Primary prevention in a racially diverse setting. Measures: Costs per quality-adjusted life years (QALYs) to produce an incremental cost-effectiveness ratio (ICER). Results: ReD CHiP had an increase of

Engaging patients and caregivers in prioritizing symptoms impacting quality of life for Duchenne and Becker muscular dystrophy

2114 and 0.04 QALYs. The ICER was

Seeing is Engaging: Vlogs as a Tool for Patient Engagement

52,850/QALY. Predominately African American (ICER: