Implementing core outcomes in kidney disease: report of the Standardized Outcomes in Nephrology (SONG) implementation workshop

There are an estimated 14,000 randomized trials published in chronic kidney disease. The most frequently reported outcomes are biochemical endpoints, rather than clinical and patient-reported outcomes including cardiovascular disease, mortality, and quality of life. While many trials have focused on optimizing kidney health, the heterogeneity and uncertain relevance of outcomes reported across trials may limit their policy and practice impact. The international Standardized Outcomes in Nephrology (SONG) Initiative was formed to identify core outcomes that are critically important to patients and health professionals, to be reported consistently across trials. We convened a SONG Implementation Workshop to discuss the implementation of core outcomes. Eighty-two patients/caregivers and health professionals participated in plenary and breakout discussions. In this report, we summarize the findings of the workshop in two main themes: socializing the concept of core outcomes, and demonstrating feasibility and usability. We outline implementation strategies and pathways to be established through partnership with stakeholders, which may bolster acceptance and reporting of core outcomes in trials, and encourage their use by end-users such as guideline producers and policymakers to help improve patient-important outcomes

Productivity, carbon assimilation and intra-annual change in tropical reef platform seagrass communities of the Torres Strait, north-eastern Australia

Detailed data on seagrass distribution, abundance, growth rates and community structure information were collected at Orman Reefs in March 2004 to estimate the above-ground productivity and carbon assimilated by seagrass meadows. Seagrass meadows were re-examined in November 2004 for comparison at the seasonal extremes of seagrass abundance. Ten seagrass species were identified in the meadows on Orman Reefs. Extensive seagrass coverage was found in March (18,700 ha) and November (21,600 ha), with seagrass covering the majority of the intertidal reef-top areas and a large proportion of the subtidal areas examined. There were marked differences in seagrass above-ground biomass, distribution and species composition between the two surveys. Major changes between March and November included a substantial decline in biomass for intertidal meadows and an expansion in area of subtidal meadows. Changes were most likely a result of greater tidal exposure of intertidal meadows prior to November leading to desiccation and temperature-related stress. The Orman Reef seagrass meadows had a total above-ground productivity of 259.8 t DW day-1 and estimated carbon assimilation of 89.4 t C day-1 in March. The majority of this production came from the intertidal meadows which accounted for 81% of the total production. Intra-annual changes in seagrass species composition, shoot density and size of meadows measured in this study were likely to have a strong influence on the total above-ground production during the year. The net estimated above-ground productivity of Orman Reefs meadows in March 2004 (1.19 g C m-2 day-1) was high compared with other tropical seagrass areas that have been studied and also higher than many other marine, estuarine and terrestrial plant communities

Long term seagrass monitoring in Cairns Harbour and Trinity Inlet: December 2006

This report details results from the December 2006 seagrass monitoring survey for Cairns Harbour and Trinity Inlet conducted as part of an annual long term monitoring program. The monitoring program was established following a baseline survey in December 2001 and examines selected representative seagrass meadows in Cairns Harbour and Trinity Inlet. Total area of each monitoring meadow, species composition and seagrass density (above ground biomass) were measured for comparison with previous surveys.\ud \ud In 2006 seagrasses in Cairns were generally healthy with total area of seagrass meadows the highest since monitoring began in 2001 and biomass for the largest meadows remaining relatively high. Within the overall area and biomass trends there were differences between intertidal and subtidal meadows and between meadows in Cairns Harbour and Trinity Inlet. There was also a substantial change to seagrasses to the south of Bessie Point resulting in the establishment of a new meadow.\ud \ud The changes to Cairns Harbour and Trinity Inlet seagrass meadows appear to be strongly linked to local and regional climate conditions and generally reflected similar changes that have occurred to seagrasses in other areas of Queensland over the same time period. The increases in intertidal seagrasses in the harbour and declines in deeper subtidal meadows further up the inlet were consistent with a return to more "normal" rainfall, temperature and light conditions over the past three years.\ud \ud The increased abundance of seagrass in Cairns Harbour may have flow on effects for fisheries in the area especially tiger and endeavour prawns which utilise these areas as a nursery ground. There was also an increase in seagrass species that are preferred as a food source by dugong and green turtles.\ud \ud Results of monitoring in 2006, combined with similar monitoring in other north Queensland locations, indicate that seagrass habitats and the marine environment in Cairns Harbour and Trinity Inlet were relatively healthy. The monitoring program has developed our understanding of the relationships between climatic changes, anthropogenic disturbance and seagrass abundance and has shown that there have been minimal impacts associated with current port and urban activities

Multifactorial breast cancer survivorship care.

Increasing numbers and longevity of cancer survivors has furthered our insight into the factors affecting their health outcomes, suggesting that multiple factors play a role (e.g., effects of cancer treatments and health behaviors). Emotional and physical symptoms may not always receive sufficient attention. In this short narrative review highlighting recent literature, we describe the most common physical and emotional symptoms of breast cancer survivors aged 50 years and older and outline a multidisciplinary symptom management approach, regardless of symptom etiology

Perspectives of postmenopausal breast cancer survivors on adjuvant endocrine therapy-related symptoms.

PURPOSE: To conduct an investigation of women's experiences related to taking AET and managing AET-related symptoms. DESIGN: Qualitative. SETTING: Main campus of the University of Pittsburgh. SAMPLE: Four groups with a total of 14 breast cancer survivors, aged ≥ 50 years with AET-related symptoms. METHODS: Semi-structured discussion guides were used to elicit recollections of conversations with health care providers about starting AET, symptom experiences, symptom management, and suggestions for improving management. Audiotaped discussions were transcribed and analyzed to identify themes. FINDINGS: Women reported that initially AET was not viewed as a choice, but rather as the necessary next step to save their lives. After starting AET, women experienced difficulties making sense of, communicating about, and managing unanticipated AET-related symptoms. Women who experienced persistently bothersome symptoms began weighing the pros and cons of AET in order to decide whether to continue treatment. CONCLUSIONS: Focus group findings suggest multiple opportunities to better prepare patients for AET and to improve assessment and management of AET-related symptoms. IMPLICATIONS FOR NURSING: exploring AET-related symptom experiences, nurses may be able to promote AET adherence in breast cancer survivors, aged ≥ 50 years

Establishing a core outcome measure for fatigue in patients on Hemodialysis: a Standardized Outcomes in Nephrology-Hemodialysis (SONG-HD) Consensus Workshop Report

Stephen McDonald is one of the SONG-HD Fatigue Workshop Collaborators who participated in The SONG-HD Fatigue Consensus Workshop held at Conference Chicago in Chicago, IL, in November 2016.Fatigue is one of the most highly prioritized outcomes for patients and clinicians, but remains infrequently and inconsistently reported across trials in hemodialysis. We convened an international Standardized Outcomes in Nephrology–Hemodialysis (SONG-HD) consensus workshop with stakeholders to discuss the development and implementation of a core outcome measure for fatigue. 15 patients/caregivers and 42 health professionals (clinicians, researchers, policy makers, and industry representatives) from 9 countries participated in breakout discussions. Transcripts were analyzed thematically. 4 themes for a core outcome measure emerged. Drawing attention to a distinct and all-encompassing symptom was explicitly recognizing fatigue as a multifaceted symptom unique to hemodialysis. Emphasizing the pervasive impact of fatigue on life participation justified the focus on how fatigue severely impaired the patient’s ability to do usual activities. Ensuring relevance and accuracy in measuring fatigue would facilitate shared decision making about treatment. Minimizing burden of administration meant avoiding the cognitive burden, additional time, and resources required to use the measure. A core outcome measure that is simple, is short, and includes a focus on the severity of the impact of fatigue on life participation may facilitate consistent and meaningful measurement of fatigue in all trials to inform decision making and care of patients receiving hemodialysis.Angela Ju, Mark Unruh, Sara Davison, Juan Dapueto, Mary Amanda Dew, Richard Fluck, Michael Germain, Sarbjit V. Jassal, Gregorio Obrador, Donal O’Donoghue, Michelle A. Josephson, Jonathan C. Craig, Andrea Viecelli, Emma O’Lone, Camilla S. Hanson, Braden Manns, Benedicte Sautenet, Martin Howell, Bharathi Reddy, Caroline Wilkie, Claudia Rutherford, and Allison Tong, on behalf of the SONG-HD Fatigue Workshop Collaborator