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Establishing a Core Outcome Measure for Fatigue in Patients on Hemodialysis: A Standardized Outcomes in Nephrology–Hemodialysis (SONG-HD) Consensus Workshop Report
No full textFatigue 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
Functional responses of uremic single skeletal muscle fibers to redox imbalances
No full textThe exact causes of skeletal muscle weakness in chronic kidney disease (CKD) remain unknown with uremic toxicity and redox imbalances being implicated. To understand whether uremic muscle has acquired any sensitivity to acute redox changes we examined the effects of redox disturbances on force generation capacity. Methods: Permeabilized single psoas fibers (N =37) from surgically induced CKD (UREM) and sham-operated (CON) rabbits were exposed to an oxidizing (10 mM Hydrogen Peroxide, H2O2) and/or a reducing [10 mM Dithiothreitol (DTT)] agent, in a blind design, in two sets of experiments examining: A) the acute effect of the addition of H2O2 on maximal (pCa 4.4) isometric force of actively contracting fibers and the effect of incubation in DTT on subsequent re-activation and force recovery (N =9 CON; N =9 UREM fibers); B) the effect of incubation in H2O2 on both submaximal (pCa 6.2) and maximal (pCa 4.4) calcium activated isometric force generation (N =9 CON; N =10 UREM fibers). Results: Based on cross-sectional area (CSA) calculations, a 14 % atrophy in UREM fibers was revealed; thus forces were evaluated in absolute values and corrected for CSA (specific force) values. A) Addition of H2O2 during activation did not significantly affect force generation in any group or the pool of fibers. Incubation in DTT did not affect the CON fibers but caused a 12 % maximal isometric force decrease in UREM fibers (both in absolute force p =0.024, and specific force, p =0.027). B) Incubation in H2O2 during relaxation lowered subsequent maximal (but not submaximal) isometric forces in the Pool of fibers by 3.5 % (for absolute force p =0.033, for specific force p =0.019) but not in the fiber groups separately. Conclusions: Force generation capacity of CON and UREM fibers is affected by oxidation similarly. However, DTT significantly lowered force in UREM muscle fibers. This may indicate that at baseline UREM muscle could have already been at a more reduced redox state than physiological. This observation warrants further investigation as it could be linked to disease-induced effects. HIPPOKRATIA 2017, 21(1): 3-7
Pasts and Presents. Making connections with the sea: A matter of a personal and professional Heimat
No full textIn this chapter, the author considers how his past and present personal relations to the sea as his Heimat have directly influenced his professional practice as a university lecturer. His connection to the sea starts with his annual family seaside holidays to Broadstairs on the Kent coast in south-east England for the first 11 years of his life. Aesthetic experience, cognitive understanding of place and his cultural history have shaped my connection with the sea. The author explores how the activity of sailing provides a means with which to connect students to maritime cultural heritage by exploring and studying the places where the land meets the sea: the towns, harbours and quays where we go sailing. The author considers the tension that exists, when teaching about the maritime pasts and cultural heritage, between a romanticised view of seafaring and seascapes and the historical, social, political issues of power, class and gender
The validation of the Severe Asthma Questionnaire (SAQ)
No full textBackground: Current disease-specific health related quality of life questionnaires do not assess deficits specific to people living with severe asthma and thus, do not meet the validity criteria set by the USA’s Food and Drug Administration (FDA). The FDA requires a stepwise approach where qualitative research is conducted and documented prior to quantitative research. We describe the final stage of validation for the SAQ.
Methods: The Severe Asthma Questionnaire (SAQ), Asthma Control Test (ACT), MiniAQLQ, and EQ-5D-5L were completed by 160 patients attending a severe asthma clinic; 51 patients completed the SAQ on two occasions for test-retest reliability analysis. The SAQ produces two scores, an average of its 16 items and a SAQ-global score from a single 100-point Borg type quality of life scale.
Results: Construct validity was demonstrated through factor analysis of the 16 items, convergent validity by correlations of >0.6 between the SAQ and other questionnaires, and discriminant validity by the ability of the SAQ to distinguish between different treatment levels (Figure 1). Test-retest reliability (intra-class correlation) was 0.93 for the SAQ and 0.93 for the SAQ-global.
Conclusions: The SAQ was developed using recommended procedures for scale development, and is a valid patient reported outcome measure for use in severe asthma. The SAQ can be used to gain an insight into patients’ perceptions of the impact of severe asthma and treatment on their lives
