Janet Arida

An intervention to maximize medication management by caregivers of persons with memory loss: Intervention overview and two-month outcomes

Overseeing medication-taking is a critical aspect of dementia caregiving. This trial examined a tailored, problem-solving intervention designed to maximize medication management practices among caregivers of persons with memory loss. Eighty-three community-dwelling dyads (patient + informal caregiver) with a baseline average of 3 medication deficiencies participated. Home- and telephone-based sessions were delivered by nurse or social worker interventionists and addressed basics of managing medications, plus tailored problem solving for specific challenges. The outcome of medication management practices was assessed using the Medication Management Instrument for Deficiencies in the Elderly (MedMaIDE) and an investigator-developed Medication Deficiency Checklist (MDC). Linear mixed modeling showed both the intervention and usual care groups had fewer medication management problems as measured by the MedMaIDE (F = 6.91, p < .01) and MDC (F = 9.72, p < .01) at 2 months post-intervention. Reduced medication deficiencies in both groups suggests that when nurses or social workers merely raise awareness of the importance of medication adherence, there may be benefit.

The application of crowdsourcing approaches to cancer research: a systematic review

Crowdsourcing is “the practice of obtaining participants, services, ideas, or content by soliciting contributions from a large group of people, especially via the Internet.” (Ranard et al. J. Gen. Intern. Med. 29:187, 2014) Although crowdsourcing has been adopted in healthcare research and its potential for analyzing large datasets and obtaining rapid feedback has recently been recognized, no systematic reviews of crowdsourcing in cancer research have been conducted. Therefore, we sought to identify applications of and explore potential uses for crowdsourcing in cancer research. We conducted a systematic review of articles published between January 2005 and June 2016 on crowdsourcing in cancer research, using PubMed, CINAHL, Scopus, PsychINFO, and Embase. Data from the 12 identified articles were summarized but not combined statistically. The studies addressed a range of cancers (e.g., breast, skin, gynecologic, colorectal, prostate). Eleven studies collected data on the Internet using web‐based platforms; one recruited participants in a shopping mall using paper‐and‐pen data collection. Four studies used Amazon Mechanical Turk for recruiting and/or data collection. Study objectives comprised categorizing biopsy images (n = 6), assessing cancer knowledge (n = 3), refining a decision support system (n = 1), standardizing survivorship care‐planning (n = 1), and designing a clinical trial (n = 1). Although one study demonstrated that “the wisdom of the crowd” (NCI Budget Fact Book, 2017) could not replace trained experts, five studies suggest that distributed human intelligence could approximate or support the work of trained experts. Despite limitations, crowdsourcing has the potential to improve the quality and speed of research while reducing costs. Longitudinal studies should confirm and refine these findings.

Creating Individualized Symptom Management Goals and Strategies for Cancer-related Fatigue for Patients With Recurrent Ovarian Cancer

Background: Cancer-related fatigue (CRF) is one of the most common symptoms among women with recurrent ovarian cancer, yet it remains extremely difficult to manage. Symptom management typically requires patients to set goals and strategies to manage their CRF, but little is known about how to create individualized CRF symptom management goals and strategies. Objective: The aim of this study was to describe cancer patients’ goals and strategies for managing CRF along with their process of individualizing both. Methods: This study is a qualitative analysis with supportive quantitative description of a Web-based symptom management randomized clinical trial, the WRITE (Written Representational Intervention to Ease) Symptoms study. Researchers conducted a content analysis on 47 participants’ CRF symptom care plans to identify common themes in participants’ goals, categorize strategies, and describe the individualization process. Results: Four general themes were identified among participants’ CRF goals: (1) enjoying time with friends and family, (2) doing the things I enjoy, (3) having energy to be physically active, and (4) keeping up with what I need to do. Cancer-related fatigue strategies were categorized into 13 groups including conserving energy, increasing activity, and talking with healthcare providers. A multistep individualization process resulted in personally meaningful strategies. Conclusions: The process by which participants individualized their CRF strategies consisted of identifying, confirming, testing, and evaluating different CRF strategies and resulted in refined, specific, and individualized strategies intended to eventually ensure participants achieve their goal. Implications for Practice: Clinicians can assist patients in individualizing their CRF goals and strategies. Individualization of CRF goals and strategies assists patients in visualizing how improving CRF will impact their life.

“Ask me, do you want to know the big picture?” Gynecologic oncology patient and provider perspectives on discussing prognosis.

37 Background: Prognosis affects decision making by providers and patients and accurate understanding of prognosis may help avoid futile end-of-life care. Gynecologic oncology (GO) patient and provider perspectives on discussing prognosis have not been described. We sought to analyze patient and provider preferences regarding timing, amount and type of information included in discussions of prognosis. METHODS Semi-structured qualitative interviews regarding palliative care with 19 GO providers (7 physicians, 7 advanced practice providers, 5 nurses) and 29 patients with advanced or recurrent gynecologic cancer at an academic medical center. Communication about prognosis was one interview domain. Two coders independently and iteratively analyzed transcripts using qualitative analysis. RESULTS Median patient age was 61, the most common cancer was ovary (59%) and 90% had recurrent disease. Providers were 74% female with median 15 years in practice. Themes included patients wanting frank discussions about prognosis, not limited to life expectancy. Further preferences regarding timing and content were individualized. All categories of providers reported having prognosis conversations. Providers saw these conversations as part of their clinical role, though they often found them difficult. Providers commonly equated prognosis purely with life expectancy. Providers recognized variation among patients in preferences regarding these conversations, but did not discuss asking patients directly about their preferences. CONCLUSIONS GO patients want frank discussions about what the future might hold, often including but not limited to life expectancy. Providers see these discussions as being within their scope of practice but often find them difficult. Opportunities exist for provider education regarding communication skills for assessing patient preferences and conducting patient centered prognosis discussions. Education should include GO physicians, advanced practice providers and nurses. Collaboration with specialty palliative care providers could facilitate that education and provide assistance with challenging cases.