Usefulness and Usability of a Personal Health Record and Survivorship Care Plan for Colorectal Cancer Survivors: Survey Study

Background: As a result of improvements in cancer screening, treatment, and supportive care, nearly two-thirds of individuals diagnosed with colorectal cancer (CRC) live for 5 years after diagnosis. An ever-increasing population of CRC survivors creates a need for effective survivorship care to help manage and mitigate the impact of CRC and its treatment. Personal health records (PHRs) and survivorship care plans provide a means of supporting the long-term care of cancer survivors. Objective: The purpose of this study is to characterize the usefulness of a CRC PHR and survivorship care plan and to describe the usability of these technologies in a population of CRC survivors. To our knowledge, this is the first study to assess a PHR and survivorship care plan specifically targeting CRC survivors. Methods: Twenty-two patients with CRC were recruited from surgery clinics of an academic medical center and Veterans Affairs hospital in Indianapolis and provided access to an online Colorectal Cancer Survivor’s Personal Health Record (CRCS-PHR). Survey data were collected to characterize the usefulness of the CRCS-PHR and describe its usability in a population of CRC survivors. CRC survivors were surveyed 6 months after being provided online access. Means and proportions were used to describe the usefulness and ease of using the CRC website. Open-ended questions were qualitatively coded using the constant comparative method. Results: CRC survivors perceived features related to their health care (ie, summary of cancer treatment history, follow-up care schedule, description of side effects, and list of community resources) to be more useful than communication features (ie, creating online relationships with family members or caregivers, communicating with doctor, and secure messages). CRC survivors typically described utilizing traditional channels (eg, via telephone or in person) to communicate with their health care provider. Participants had overall positive perceptions with respect to ease of use and overall satisfaction. Major challenges experienced by participants included barriers to system log-in, lack of computer literacy or experience, and difficulty entering their patient information. Conclusions: For CRC, survivors may find the greater value in a PHR’s medical content than the communication functions, which they have available elsewhere. These findings regarding the usefulness and usability of a PHR for the management of CRC survivorship provide valuable insights into how best to tailor these technologies to patients’ needs. These findings can inform future design and development of PHRs for purposes of both cancer and chronic disease management

The Use of Cancer-Specific Patient-Centered Technologies Among Underserved Populations in the United States: Systematic Review

Background: In the United States, more than 1.6 million new cases of cancer are estimated to be diagnosed each year. However, the burden of cancer among the US population is not shared equally, with racial and ethnic minorities and lower-income populations having a higher cancer burden compared with their counterparts. For example, African Americans have the highest mortality rates and shortest survival rates for most cancers compared with other racial or ethnic groups in the United States. A wide range of technologies (eg, internet-based [electronic health, eHealth] technologies, mobile [mobile health, mHealth] apps, and telemedicine) available to patients are designed to improve their access to care and empower them to participate actively in their care, providing a means to reduce health care disparities; however, little is known of their use among underserved populations. Objective: The aim of this study was to systematically review the current evidence on the use of cancer-specific patient-centered technologies among various underserved populations. Methods: Computer-based search was conducted in the following academic databases: (1) PubMed (cancer subset), (2) MEDLINE, (3) PsycINFO, and (4) CINAHL. We included studies that were peer-reviewed, published in the English language, and conducted in the United States. Each study was individually assessed for relevance, with any disagreements being reconciled by consensus. We used a 3-step inclusion process in which we examined study titles, abstracts, and full-text papers for assessment of inclusion criteria. We systematically extracted information from each paper meeting our inclusion criteria. Results: This review includes 71 papers that use patient-centered technologies that primarily targeted African Americans (n=31), rural populations (n=14), and Hispanics (n=12). A majority of studies used eHealth technologies (n=41) finding them to be leading sources of cancer-related health information and significantly improving outcomes such as screening among nonadherent individuals and increasing knowledge about cancer and cancer screening. Studies on mHealth found that participants reported overall favorable responses to receiving health information via short message service (SMS) text message; however, challenges were experienced with respect to lack of knowledge of how to text among some participants. More complex mobile technologies (eg, a tablet-based risk assessment tool) were also found favorable to use and acceptable among underserved populations; however, they also resulted in more significant barriers, for example, participants expressed concerns regarding security and unfamiliarity with the technology and preferred further instruction and assistance in its use. Conclusions: There is a growing body of literature exploring patient-centered technology and its influence on care of underserved populations. In this review, we find that these technologies seem to be effective, especially when tailored, in improving patient and care-related outcomes. Despite the potential of patient-centered technologies and the receptivity of underserved populations, challenges still exist with respect to their effective use and usability

An exploratory study of predictors of response to vagus nerve stimulation paired with upper-limb rehabilitation after ischemic stroke

We have previously shown the safety and feasibility of vagus nerve stimulation (VNS) paired with upper-limb rehabilitation after ischemic stroke. In this exploratory study, we assessed whether clinical and brain MRI variables predict response to treatment. We used data from two completed randomised and blinded clinical trials (N = 35). All participants had moderate to severe upper-limb weakness and were randomised to 6-weeks intensive physiotherapy with or without VNS. Participants had 3 T brain MRI at baseline. The primary outcome was change in Fugl-Meyer Assessment, upper-extremity score (FMA-UE) from baseline to the first day after therapy completion. We used general linear regression to identify clinical and brain MRI predictors of change in FMA-UE. VNS-treated participants had greater improvement in FMA-UE at day-1 post therapy than controls (8.63 ± 5.02 versus 3.79 ± 5.04 points, t = 2.83, Cohen’s d = 0.96, P = 0.008). Higher cerebrospinal fluid volume was associated with less improvement in FMA-UE in the control but not VNS group. This was also true for white matter hyperintensity volume but not after removal of an outlying participant from the control group. Responders in the VNS group had more severe arm impairment at baseline than responders to control. A phase III trial is now underway to formally determine whether VNS improves outcomes and will explore whether these differ in people with more severe baseline upper-limb disability and cerebrovascular disease

Efficacy of a self-help parenting intervention for parents of children with attention deficit hyperactivity disorder in adjunct to usual treatment—Small-scale randomized controlled trial

Background: Multimodal intervention incorporating psychosocial intervention and medication is recommended for school-aged children with attention deficit hyperactivity disorder (ADHD). This randomized controlled trial (RCT) investigates the adjunctive benefit of the self-help version of the New Forest Parenting Programme (NFPP-SH) when offered in addition to treatment as usual (TAU) compared with TAU alone. Method: Fifty-two children, receiving medication for ADHD as part of their usual care, were randomized to receive NFPP-SH + TAU or TAU alone. Results: When used in adjunct to TAU, NFPP-SH may have beneficial effects for parenting efficacy (F = 6.28, p = 0.02), child social performance in school and negative comments made by parents during a recorded speech sample. However, the self-help intervention did not have any additional effect on child behaviour. Conclusions: This study provides further support for self-help interventions as potentially low-intensity and cost-effective alternatives to therapist-led parenting interventions. The findings require replication in larger samples before any firm conclusions about adjunctive efficacy of NFPP-SH can be drawn but underline the potential for self-help within routine treatment (ClinicalTrials.gov Identifier: NCT02174952)

Visual Impairment/lntracranial Pressure Risk Clinical Care Data Tools

Prior to 2010, several ISS crewmembers returned from spaceflight with changes to their vision, ranging from a mild hyperopic shift to frank disc edema. As a result, NASA expanded clinical vision testing to include more comprehensive medical imaging, including Optical Coherence Tomography and 3 Tesla Brain and Orbit MRIs. The Space and Clinical Operations (SCO) Division developed a clinical practice guideline that classified individuals based on their symptoms and diagnoses to facilitate clinical care. For the purposes of clinical surveillance, this classification was applied retrospectively to all crewmembers who had sufficient testing for classification. This classification is also a tool that has been leveraged for researchers to identify potential risk factors. In March 2014, driven in part by a more comprehensive understanding of the imaging data and increased imaging capability on orbit, the SCO Division revised their clinical care guidance to outline inflight care and increase postflight follow up. The new clinical guidance does not include a classification schem

Design of the Global Health chemical diversity library v2 for screening against infectious diseases

There is a need for novel chemical matter for phenotypic and target-based screens to find starting points for drug discovery programmes in neglected infectious diseases and non-hormonal contraceptives that disproportionately affect Low- and Middle-Income Countries (LMICs). In some disease areas, multiple screens of corporate and other libraries have been carried out, giving rise to some valuable starting points and leading to preclinical candidates. While in other disease areas, little screening has been carried out. Much screening against pathogens has been conducted phenotypically as there are few robustly validated protein targets. However, many of the active compound series identified share the same molecular targets. To address the need for new chemical material, in this article, we describe the design of a new library designed for screening in drug discovery programmes for neglected infectious diseases. The compounds have been selected from the Enamine REAL (REadily AccessibLe) library, a virtual library which contains approximately 4.5 billion molecules. The molecules theoretically can be synthesized quickly using commercially available intermediates and building blocks. The vast majority of these have not been prepared before, so this is a source of novel compounds. In this paper, we describe the design of a diverse library of 30,000 compounds from this collection (graphical abstract). The new library will be made available to laboratories working in neglected infectious diseases, subject to a review process

Design of the Global Health chemical diversity library v2 for screening against infectious diseases

There is a need for novel chemical matter for phenotypic and target-based screens to find starting points for drug discovery programmes in neglected infectious diseases and non-hormonal contraceptives that disproportionately affect Low- and Middle-Income Countries (LMICs). In some disease areas, multiple screens of corporate and other libraries have been carried out, giving rise to some valuable starting points and leading to preclinical candidates. While in other disease areas, little screening has been carried out. Much screening against pathogens has been conducted phenotypically as there are few robustly validated protein targets. However, many of the active compound series identified share the same molecular targets. To address the need for new chemical material, in this article, we describe the design of a new library designed for screening in drug discovery programmes for neglected infectious diseases. The compounds have been selected from the Enamine REAL (REadily AccessibLe) library, a virtual library which contains approximately 4.5 billion molecules. The molecules theoretically can be synthesized quickly using commercially available intermediates and building blocks. The vast majority of these have not been prepared before, so this is a source of novel compounds. In this paper, we describe the design of a diverse library of 30,000 compounds from this collection (graphical abstract). The new library will be made available to laboratories working in neglected infectious diseases, subject to a review process

Vagus nerve stimulation paired with upper limb rehabilitation after chronic stroke

Background and Purpose: We assessed safety, feasibility, and potential effects of vagus nerve stimulation (VNS) paired with rehabilitation for improving arm function after chronic stroke. Methods: We performed a randomized, multisite, double-blinded, sham-controlled pilot study. All participants were implanted with a VNS device and received 6-week in-clinic rehabilitation followed by a home exercise program. Randomization was to active VNS (n=8) or control VNS (n=9) paired with rehabilitation. Outcomes were assessed at days 1, 30, and 90 post-completion of in-clinic therapy. Results: All participants completed the course of therapy. There were 3 serious adverse events related to surgery. Average FMA-UE scores increased 7.6 with active VNS and 5.3 points with control at day 1 post–in-clinic therapy (difference, 2.3 points; CI, −1.8 to 6.4; P=0.20). At day 90, mean scores increased 9.5 points from baseline with active VNS, and the control scores improved by 3.8 (difference, 5.7 points; CI, −1.4 to 11.5; P=0.055). The clinically meaningful response rate of FMA-UE at day 90 was 88% with active VNS and 33% with control VNS (P<0.05). Conclusions: VNS paired with rehabilitation was acceptably safe and feasible in participants with upper limb motor deficit after chronic ischemic stroke. A pivotal study of this therapy is justified