Launching PCORnet, a national patient-centered clinical research network

The Patient-Centered Outcomes Research Institute (PCORI) has launched PCORnet, a major initiative to support an effective, sustainable national research infrastructure that will advance the use of electronic health data in comparative effectiveness research (CER) and other types of research. In December 2013, PCORI's board of governors funded 11 clinical data research networks (CDRNs) and 18 patient-powered research networks (PPRNs) for a period of 18 months. CDRNs are based on the electronic health records and other electronic sources of very large populations receiving healthcare within integrated or networked delivery systems. PPRNs are built primarily by communities of motivated patients, forming partnerships with researchers. These patients intend to participate in clinical research, by generating questions, sharing data, volunteering for interventional trials, and interpreting and disseminating results. Rapidly building a new national resource to facilitate a large-scale, patient-centered CER is associated with a number of technical, regulatory, and organizational challenges, which are described here

Making sense of a diagnosis of incurable cancer: The importance of communication

Purpose:  Patients diagnosed with incurable cancer may experience existential distressand difficulty in re-appraising their lives because of uncertainty about the future. Objectives: This study sought to understand how patients living with incurable cancer made sense of their diagnosis, how they prepared for the future and what support they wanted from their health professionals.  Subjects:  27 patients were recruited from the oncology and palliative care service at three metropolitan hospitals. Methods:  A qualitative research approach was used. Semi-structured face-to-face interviews were conducted. Interviews were audio-taped and transcribed verbatim.  Data was analyzed using the constant-comparative method.  Results:  Participants did not express a need to make sense of their diagnosis nor always ascribe to a particular religious belief; rather, many relied on a personal spirituality or philosophy to bring meaning to their experience. Importance was placed on their doctor keeping up with technology, being honest, and being confident and positive. Conclusion:  Participants in this study had incurable cancer but making sense of their current situation was not a conscious priority. For these patients, uncertainty was a positive, as certainty for them indicates death is approaching. What these interviews suggest, from the patient’s perspective, is that there is an implied contract between doctor and patient during this period which involves the doctor managing the flow of difficult information so that the patient can maintain normality for as long as possible. Understanding this helps to explain the difficulty of having advance care planning conversations within this setting, despite the many opportunities that a longer disease trajectory would seem to offer.

Cognitive demands of face monitoring: Evidence for visuospatial overload

Young children perform difficult communication tasks better face to face than when they cannot see one another (e.g., Doherty-Sneddon & Kent, 1996). However, in recent studies, it was found that children aged 6 and 10 years, describing abstract shapes, showed evidence of face-to-face interference rather than facilitation. For some communication tasks, access to visual signals (such as facial expression and eye gaze) may hinder rather than help children’s communication. In new research we have pursued this interference effect. Five studies are described with adults and 10- and 6-year-old participants. It was found that looking at a face interfered with children’s abilities to listen to descriptions of abstract shapes. Children also performed visuospatial memory tasks worse when they looked at someone’s face prior to responding than when they looked at a visuospatial pattern or at the floor. It was concluded that performance on certain tasks was hindered by monitoring another person’s face. It is suggested that processing of visual communication signals shares certain processing resources with the processing of other visuospatial information

Should providers encourage realistic weight expectations and satisfaction with lost weight in commercial weight loss programs? a preliminary study

Background Attrition is a problem among patients who participate in commercial weight loss programs. One possible explanation is that if patients are unable to reach a weight that they expect to achieve, they may be more likely to drop out of treatment. This study investigated variables associated with attrition among 30 obese patients who completed a liquid meal replacement program (LMR) and enrolled in a 52-week Small Changes Maintenance intervention (SCM). Patients lost a median 18% of body weight during LMR and completed assessments about weight expectations and weight satisfaction pre- and post-SCM. Findings Of the 30 patients who started SCM, 8 (27%) were lost to attrition. Odds of SCM attrition were higher in patients who lost ≤ 18.2% of pre-LMR weight (OR: 12.25, P = 0.035), had lower satisfaction (≤7) pre-SCM (OR: 10.11, P = 0.040), and who expected further weight loss of 9.1 kg or more pre-SCM (OR: 10.11, P = 0.040). SCM completers significantly increased weight loss expectations by a median of 2.3 kg from pre-SCM to post-SCM (WSR P = 0.049) that paralleled weight regained post-SCM (2.7 kg). Conclusions After completion of a medically-supervised commercial weight loss program, patients with the greatest expectations for further weight loss and the lowest weight satisfaction were more likely to drop out of SCM. Failure to participate in maintenance treatment may lead to regain of greater than half of lost weight over the next year. Among SCM completers, lower expectations for further weight loss and greater weight satisfaction appeared to be associated with continued engagement in maintenance treatment

The core minimum dataset for measuring pain outcomes in pain services across Scotland. Developing and testing a brief multi-dimensional questionnaire

BACKGROUND: There is currently no agreed minimum dataset to inform specialist chronic pain service provision. We aimed to develop a Core Minimum Dataset (CMD) for pain services in Scotland and perform preliminary analysis to evaluate its psychometric properties in adults with chronic pain. METHODS: The questionnaire was developed following a review of existing relevant data collection instruments and national consultation. The CMD questionnaire was completed alongside a routine pre-clinic questionnaire by patients attending two pain services over 3 months. Concurrent validity was tested by comparing scores between the CMD and pre-existing questionnaires. Reliability was assessed by test-retest and discriminative validity via receiver operating characteristic (ROC) curves. RESULTS: The final CMD questionnaire consisted of five questions on four domains: pain severity (Chronic Pain Grade [CPG] Q1); pain interference (CPG Q5); emotional impact (Patient Health Questionnaire-2 [PHQ-2], two questions); and quality of life (Short Form Health Survey-36 [SF-36] Q1). 530 patients completed the questionnaire. Strong correlation was found with the Hospital Anxiety and Depression Scale (r(s) = 0.753, p < 0.001). Moderate correlations were found with the Brief Pain Inventory for pain interference (r(s) = 0.585, p < 0.001) and pain severity (r(s) = 0.644, p < 0.001). Moderate to good reliability was demonstrated (Intra-class Correlation Coefficient = 0.572–0.845). All items indicated good discrimination for relevant health states. CONCLUSIONS: The findings represent initial steps towards developing an accurate questionnaire that is feasible for assessing chronic pain in adults attending specialist pain clinics and measuring service improvements in Scotland. Further validation testing, in clinical settings, is now required

Changes in the Demographic and Clinicopathological Characteristics of Thyroid Cancer : A Population-Based Investigation in Algeria, 1993-2013

Peer reviewedPostprintPublisher PD

Long‐Term Outcomes Among Elderly Survivors of Out‐of‐Hospital Cardiac Arrest

Peer Reviewedhttps://deepblue.lib.umich.edu/bitstream/2027.42/139093/1/jah31396_am.pdfhttps://deepblue.lib.umich.edu/bitstream/2027.42/139093/2/jah31396.pdfhttps://deepblue.lib.umich.edu/bitstream/2027.42/139093/3/jah31396-sup-0001-SupInfo.pd

"Engaging with birth stories in pregnancy: a hermeneutic phenomenological study of women's experiences across two generations"

BACKGROUND: The birth story has been widely understood as a crucial source of knowledge about childbirth. What has not been reported is the effect that birth stories may have on primigravid women's understandings of birth. Findings are presented from a qualitative study exploring how two generations of women came to understand birth in the milieu of other's stories. The prior assumption was that birth stories must surely have a positive or negative influence on listeners, steering them towards either medical or midwifery-led models of care. METHODS: A Heideggerian hermeneutic phenomenological approach was used. Twenty UK participants were purposively selected and interviewed. Findings from the initial sample of 10 women who were pregnant in 2012 indicated that virtual media was a primary source of birth stories. This led to recruitment of a second sample of 10 women who gave birth in the 1970s-1980s, to determine whether they were more able to translate information into knowledge via stories told through personal contact and not through virtual technologies RESULTS: Findings revealed the experience of 'being-in-the-world' of birth and of stories in that world. From a Heideggerian perspective, the birth story was constructed through 'idle talk' (the taken for granted assumptions of things, which come into being through language). Both oral stories and those told through technology were described as the 'modern birth story'. The first theme 'Stories are difficult like that', examines the birth story as problematic and considers how stories shape meaning. The second 'It's a generational thing', considers how women from two generations came to understand what their experience might be. The third 'Birth in the twilight of certainty,' examines women's experience of Being in a system of birth as constructed, portrayed and sustained in the stories being shared. CONCLUSIONS: The women pregnant in 2012 framed their expectations in the language of choice, whilst the women who birthed in the 1970s-1980s framed their experience in the language of safety. For both, however, the world of birth was the same; saturated with, and only legitimised by the birth of a healthy baby. Rather than creating meaningful understanding, the 'idle talk' of birth made both cohorts fearful of leaving the relative comfort of the 'system', and of claiming an alternative birth

Trypanosoma amblyommi sp. nov. (Protozoa: Kinetoplastida) isolated from Amblyomma brasiliense (Acari: Ixodidae) ticks in Rio de Janeiro, Brazil.

Parasites of the genus Trypanosoma are microorganisms that display wide morphological, biological and genetic variability. Here we present the first description of an isolate of the genus Trypanosoma naturally infecting the tick Amblyomma brasiliense. The ticks were collected from a specimen of Tayassu pecari (Queixada, white-lipped peccary) from the Itatiaia National Park, Itatiaia, Rio de Janeiro, Brazil. The isolate was characterised by molecular, morphometric and biological analyses. A Trypanosoma culture was isolated from crushed nymphal and adult ticks, propagated in the tick cell line IDE8 and maintained in L15B culture medium, incubated at 32 °C. The isolate grew well in L15B medium at 30 °C, 32 °C and 34 °C but not at lower or higher temperatures. The culture remained stable in axenic L15B medium at 30 °C. Cryopreserved cultures retained viability after cryopreservation in liquid nitrogen. Growth in axenic medium and developmental forms of the trypanosomes were analysed. Analysis of the 18S rDNA region confirmed the authenticity of this new species and the nucleotide sequence was deposited in Genbank. The species was named Trypanosoma amblyommi sp. nov. strain C1RJ. Characteristics related to pathogenicity, involvement with vertebrate hosts, epidemiology, developmental cycle and transmission mechanisms are still unknown. Therefore, further studies are necessary to understand aspects of the biological cycle of Trypanosoma amblyommi sp. nov