Word Adjacency Graph Modeling: Separating Signal From Noise in Big Data

There is a need to develop methods to analyze Big Data to inform patient-centered interventions for better health outcomes. The purpose of this study was to develop and test a method to explore Big Data to describe salient health concerns of people with epilepsy. Specifically, we used Word Adjacency Graph modeling to explore a data set containing 1.9 billion anonymous text queries submitted to the ChaCha question and answer service to (a) detect clusters of epilepsy-related topics, and (b) visualize the range of epilepsy-related topics and their mutual proximity to uncover the breadth and depth of particular topics and groups of users. Applied to a large, complex data set, this method successfully identified clusters of epilepsy-related topics while allowing for separation of potentially non-relevant topics. The method can be used to identify patient-driven research questions from large social media data sets and results can inform the development of patient-centered interventions

Oral Endocrine Therapy Nonadherence, Adverse Effects, Decisional Support, and Decisional Needs in Women With Breast Cancer

BACKGROUND: Oral endocrine therapy (OET) such as tamoxifen or aromatase inhibitors reduces recurrence and mortality for the 75% of breast cancer survivors (BCSs) with a diagnosis of estrogen receptor-positive breast cancer. Because many BCSs decide not take OET as recommended because of adverse effects, understanding BCSs' decisional supports and needs is foundational to supporting quality OET decision making about whether to adhere to OET. OBJECTIVE: The aim of this study was to examine literature pertaining to OET nonadherence and adverse effects using the Ottawa Decision Support Framework categories of decisional supports and decisional needs because these factors potentially influence OET use. METHODS: A systematic literature search was performed in PubMed and CINAHL using combined search terms "aromatase inhibitors and adherence" and "tamoxifen and adherence." Studies that did not meet criteria were excluded. Relevant data from 25 publications were extracted into tables and reviewed by 2 authors. RESULTS: Findings identified the impact of adverse effects on OET nonadherence, an absence of decisional supports provided to or available for BCSs who are experiencing OET adverse effects, and the likelihood of unmet decisional needs related to OET. CONCLUSIONS: Adverse effects contribute to BCSs decisions to stop OET, yet there has been little investigation of the process through which that occurs. This review serves as a call to action for providers to provide support to BCSs experiencing OET adverse effects and facing decisions related to nonadherence. IMPLICATIONS FOR PRACTICE: Findings suggest BCSs prescribed OET have unmet decisional needs, and more decisional supports are needed for BCSs experiencing OET adverse effects

Paced Respiration for Vasomotor and Other Menopausal Symptoms: A Randomized, Controlled Trial

poster abstractBackground: Paced respiration has been internationally recommended for vasomotor symptoms (e.g., hot flashes, night sweats) despite limited empirical evidence. Objective: To evaluate efficacy of a paced respiration intervention against breathing control and usual care control for vasomotor and other menopausal symptoms. Design: A 16-week, 3-group, partially blinded, controlled trial with 2:2:1 randomization and stratification by group (breast cancer, no cancer) was conducted in a Midwestern city and surrounding area. Participants: 218 randomized women (96 breast cancer survivors, 122 menopausal women without cancer) were recruited through community mailings and registries (29% minority). Interventions: Training, home practice support, and instructions to use the breathing at the time of each hot flash were delivered via compact disc with printed booklet (paced respiration intervention) or digital videodisc with printed booklet (fast shallow breathing control). Usual care control received a letter regarding group assignment. Main Measures: Outcomes included hot flash frequency, severity, and bother (primary), hot flash interference in daily life, perceived control over hot flashes, and mood and sleep disturbances (secondary). Intervention performance, adherence, and adverse events were assessed. Key Results: There were no significant group differences for primary outcomes at 8- or 16-weeks post-randomization. Most intervention participants did not achieve 50% reduction in vasomotor symptoms despite demonstrated ability to correctly do paced respiration and daily practice. Statistically significant differences in secondary outcomes at 8- and 16-weeks were small, not likely to be clinically relevant, and as likely to favor intervention as breathing control. Conclusions: Paced respiration is unlikely to provide clinical benefit for vasomotor or other menopausal symptoms in breast cancer survivors or menopausal women without cancer

Menopause and Big Data: Word Adjacency Graph Modeling of Menopause-Related ChaCha® Data

OBJECTIVE: To detect and visualize salient queries about menopause using Big Data from ChaCha. METHODS: We used Word Adjacency Graph (WAG) modeling to detect clusters and visualize the range of menopause-related topics and their mutual proximity. The subset of relevant queries was fully modeled. We split each query into token words (ie, meaningful words and phrases) and removed stopwords (ie, not meaningful functional words). The remaining words were considered in sequence to build summary tables of words and two and three-word phrases. Phrases occurring at least 10 times were used to build a network graph model that was iteratively refined by observing and removing clusters of unrelated content. RESULTS: We identified two menopause-related subsets of queries by searching for questions containing menopause and menopause-related terms (eg, climacteric, hot flashes, night sweats, hormone replacement). The first contained 263,363 queries from individuals aged 13 and older and the second contained 5,892 queries from women aged 40 to 62 years. In the first set, we identified 12 topic clusters: 6 relevant to menopause and 6 less relevant. In the second set, we identified 15 topic clusters: 11 relevant to menopause and 4 less relevant. Queries about hormones were pervasive within both WAG models. Many of the queries reflected low literacy levels and/or feelings of embarrassment. CONCLUSIONS: We modeled menopause-related queries posed by ChaCha users between 2009 and 2012. ChaCha data may be used on its own or in combination with other Big Data sources to identify patient-driven educational needs and create patient-centered interventions

SOMATOSENSORY AMPLIFICATION AND MENOPAUSAL SYMPTOMS IN BREAST CANCER SURVIVORS AND MIDLIFE WOMEN

OBJECTIVES Somatosensory amplification is the experience of sensing everyday bodily sensations as intense, agitating, and unpleasant. Using data from menopausal breast cancer survivors and midlife women without cancer, the study purposes were to (1) explore the psychometric properties of the Somatosensory Amplification Scale and (2) to describe somatosensory amplification and its relationship to menopausal symptoms of hot flashes, mood and sleep disturbance. STUDY DESIGN This was a cross-sectional, descriptive, correlational study using demographic, e-diary, and questionnaire data from 99 breast cancer survivors and 138 midlife women. MAIN OUTCOME MEASURES Somatosensory amplification, hot flashes (frequency, severity, bother, interference, perceived control), mood, and sleep. RESULTS Cronbach’s alphas for the scale were low. When an 8-item version of the scale was evaluated, alphas improved and item-total correlations remained strong or improved. Midlife women and breast cancer survivors did not have significantly different somatosensory amplification total or item scores after adjusting for group differences in demographics. Somatosensory amplification was significantly correlated with hot flash interference, perceived control over hot flashes, and mood and sleep disturbance in both groups but the patterns of correlations differed slightly between groups and depending on whether the 10-item or 8-item scale was used. CONCLUSION Somatosensory amplification may be a relevant concept to assess in relation to the menopausal symptom experience of midlife women with and without breast cancer as it may represent a potential intervention target to improve the menopausal symptom experience

Confirmatory factor analysis of the Pittsburgh Sleep Quality Index in women with hot flashes

OBJECTIVE: Women, especially those with hot flashes, report poor sleep quality during various stages of the menopausal transition and postmenopause. Sleep measurements vary widely because of the copious instruments available. The Pittsburgh Sleep Quality Index (PSQI) is a frequently used questionnaire that produces a single score for sleep quality. This one-factor structure has not received consistent support in the literature. The goal of this analysis was to determine the best factor structure of the PSQI in women with hot flashes. METHODS: A confirmatory factor analysis was conducted on PSQI baseline data from three randomized controlled clinical trials enrolling perimenopausal and postmenopausal women with hot flashes (N = 849) from the Menopause Strategies: Finding Lasting Answers for Symptoms and Health network. Several a priori factor models were compared. RESULTS: One-factor and two-factor models did not fit the data. A three-factor model comprising sleep efficiency, perceived sleep quality, and daily disturbance showed good fit; however, the sleep medication item was dropped because of poor fit and low rates of sleep medication use. The three-factor model was examined in African-American and white subsamples and was found to be similar in both groups; however, two items showed small group differences in strength as indicators. CONCLUSIONS: Sleep quality in midlife women with hot flashes, as measured by the PSQI, seems to comprise three correlated factors. Minor measurement differences detected between groups are of research interest but do not necessitate different scoring practices. Additional research is needed to further define sleep quality and its associations with health-related outcomes

Systematic review of sleep disorders in cancer patients: can the prevalence of sleep disorders be ascertained?

Although sleep is vital to all human functioning and poor sleep is a known problem in cancer, it is unclear whether the overall prevalence of the various types of sleep disorders in cancer is known. The purpose of this systematic literature review was to evaluate if the prevalence of sleep disorders could be ascertained from the current body of literature regarding sleep in cancer. This was a critical and systematic review of peer-reviewed, English-language, original articles published from 1980 through 15 October 2013, identified using electronic search engines, a set of key words, and prespecified inclusion and exclusion criteria. Information from 254 full-text, English-language articles was abstracted onto a paper checklist by one reviewer, with a second reviewer randomly verifying 50% (k = 99%). All abstracted data were entered into an electronic database, verified for accuracy, and analyzed using descriptive statistics and frequencies in SPSS (v.20) (North Castle, NY). Studies of sleep and cancer focus on specific types of symptoms of poor sleep, and there are no published prevalence studies that focus on underlying sleep disorders. Challenging the current paradigm of the way sleep is studied in cancer could produce better clinical screening tools for use in oncology clinics leading to better triaging of patients with sleep complaints to sleep specialists, and overall improvement in sleep quality

Validity, cut-points, and minimally important differences for two hot flash-related daily interference scales

OBJECTIVES: To conduct psychometric analyses to condense the Hot Flash-Related Daily Interference Scale (HFRDIS) into a shorter form termed the Hot Flash Interference (HFI) scale; evaluate cut-points for both scales; and establish minimally important differences (MIDs) for both scales. METHODS: We analyzed baseline and postrandomization patient-reported data pooled across three randomized trials aimed at reducing vasomotor symptoms (VMS) in 899 midlife women. Trials were conducted across five MsFLASH clinical sites between July 2009 and October 2012. We eliminated HFRDIS items based on experts' content validity ratings and confirmatory factor analysis, and evaluated cut-points and established MIDs by mapping HFRDIS and HFI to other measures. RESULTS: The three-item HFI (interference with sleep, mood, and concentration) demonstrated strong internal consistency (alphas of 0.830 and 0.856), showed good fit to the unidimensional "hot flash interference factor," and strong convergent validity with HFRDIS scores, diary VMS, and menopausal quality of life. For both scales, cut-points of mild (0-3.9), moderate (4-6.9), and severe (7-10) interference were associated with increasing diary VMS ratings, sleep, and anxiety. The average MID was 1.66 for the HFRDIS and 2.34 for the HFI. CONCLUSIONS: The HFI is a brief assessment of VMS interference and will be useful in busy clinics to standardize VMS assessment or in research studies where response burden may be an issue. The scale cut-points and MIDs should prove useful in targeting those most in need of treatment, monitoring treatment response, and interpreting existing and future research findings

Solving School’s Survey Request Overload

Limited information is available on strategies for managing the large number of survey requests that reach an individual nursing school. This article addresses problems identified in managing survey requests and describes the implementation and evaluation of a solution. Identified problems included the appearance of endorsing studies of varying quality and rigor, overlap and competition between external study requests and internal studies, respondent burden, and level of anonymity and confidentiality. The solution included a school-wide policy for tracking and vetting study requests before they were distributed. Evaluation data show the number of requests received (total, by month and source, by target population), their disposition (withdrawn, approved, not approved for distribution), and quality improvement data on meeting a 30-day target turnaround time. Additional considerations are also discussed

Finding the Patient’s Voice Using Big Data: Analysis of Users’ Health-Related Concerns in the ChaCha Question-and-Answer Service (2009–2012)

Background: The development of effective health care and public health interventions requires a comprehensive understanding of the perceptions, concerns, and stated needs of health care consumers and the public at large. Big datasets from social media and question-and-answer services provide insight into the public’s health concerns and priorities without the financial, temporal, and spatial encumbrances of more traditional community-engagement methods and may prove a useful starting point for public-engagement health research (infodemiology). Objective: The objective of our study was to describe user characteristics and health-related queries of the ChaCha question-and-answer platform, and discuss how these data may be used to better understand the perceptions, concerns, and stated needs of health care consumers and the public at large. Methods: We conducted a retrospective automated textual analysis of anonymous user-generated queries submitted to ChaCha between January 2009 and November 2012. A total of 2.004 billion queries were read, of which 3.50% (70,083,796/2,004,243,249) were missing 1 or more data fields, leaving 1.934 billion complete lines of data for these analyses. Results: Males and females submitted roughly equal numbers of health queries, but content differed by sex. Questions from females predominantly focused on pregnancy, menstruation, and vaginal health. Questions from males predominantly focused on body image, drug use, and sexuality. Adolescents aged 12–19 years submitted more queries than any other age group. Their queries were largely centered on sexual and reproductive health, and pregnancy in particular. Conclusions: The private nature of the ChaCha service provided a perfect environment for maximum frankness among users, especially among adolescents posing sensitive health questions. Adolescents’ sexual health queries reveal knowledge gaps with serious, lifelong consequences. The nature of questions to the service provides opportunities for rapid understanding of health concerns and may lead to development of more effective tailored interventions. [J Med Internet Res 2016;18(3):e44