Living well with kidney disease by patient and care-partner empowerment: Kidney health for everyone everywhere

Living with chronic kidney disease (CKD) is associated with hardships for patients and their care-partners. Empowering patients and their care-partners, including family members or friends involved in their care, may help minimize the burden and consequences of CKD related symptoms to enable life participation. There is a need to broaden the focus on living well with kidney disease and re-engagement in life, including an emphasis on patients being in control. The World Kidney Day (WKD) Joint Steering Committee has declared 2021 the year of “Living Well with Kidney Disease” in an effort to increase education and awareness on the important goal of patient empowerment and life participation. This calls for the development and implementation of validated patient-reported outcome measures to assess and address areas of life participation in routine care. It could be supported by regulatory agencies as a metric for quality care or to support labelling claims for medicines and devices. Funding agencies could establish targeted calls for research that address the priorities of patients. Patients with kidney disease and their care-partners should feel supported to live well through concerted efforts by kidney care communities including during pandemics. In the overall wellness programme for kidney disease patients, the need for prevention should be reiterated. Early detection with a prolonged course of wellness despite kidney disease, after effective secondary and tertiary prevention programmes, should be promoted. WKD 2021 continues to call for increased awareness of the importance of preventive measures throughout populations, professionals, and policy makers, applicable to both developed and developing countries.     

Development of a Patient Decision Aid for Syncope in the Emergency Department: the SynDA Tool

Objectives

The objective was to develop a patient decision aid (DA) to promote shared decision making (SDM) for stable, alert patients who present to the emergency department (ED) with syncope.

Methods

Using input from patients, clinicians, and experts in the field of syncope, health care design, and SDM, we created a prototype of a paper‐based DA to engage patients in the disposition decision (admission vs. discharge) after an unremarkable ED evaluation for syncope. In phase 1, we conducted one‐on‐one semistructured exploratory interviews with 10 emergency physicians and 10 ED syncope patients. In phase 2, we conducted one‐on‐one directed interviews with 15 emergency care clinicians, five cardiologists, and 12 ED syncope patients to get detailed feedback on DA content and design. We iteratively modified the aid using feedback from each interviewee until clarity and usability had been optimized.

Results

The 11 × 17‐inch, paper‐based DA, titled SynDA, includes four sections: 1) explanation of syncope, 2) explanation of future risks, 3) personalized 30‐day risk estimate, and 4) disposition options. The personalized risk estimate is calculated using a recently published syncope risk‐stratification tool. This risk estimate is stated in natural frequency and graphically displayed using a 100‐person color‐coded pictogram. Patient‐oriented questions are included to stimulate dialogue between patient and clinician. At the end of the development process, patient and physician participants expressed satisfaction with the clarity and usability of the DA.

Conclusions

We iteratively developed an evidence‐based DA to facilitate SDM for alert syncope patients after an unremarkable ED evaluation. Further testing is required to determine its effects on patient care. This DA has the potential to improve care for syncope patients and promote patient‐centered care in emergency medicine.

     

Once-Daily Triple Therapy in Patients with COPD: Patient-Reported Symptoms and Quality of Life

Introduction

Directly recorded patient experience of symptoms and health-related quality of life (HRQoL) can complement lung function and exacerbation rate data in chronic obstructive pulmonary disease (COPD) clinical studies. The FULFIL study recorded daily symptoms and activity limitation together with additional patient-reported outcomes of dyspnea and HRQoL, as part of the prespecified analyses. FULFIL co-primary endpoint data have been previously reported.

Methods

FULFIL was a phase III, 24-week, randomized, double-blind, double-dummy, multicenter study comparing once-daily single inhaler triple therapy [fluticasone furoate/umeclidinium/vilanterol (FF/UMEC/VI)] 100 µg/62.5 µg/25 µg with twice-daily inhaled corticosteroid/long-acting β₂-agonist therapy [budesonide/formoterol (BUD/FOR)] 400 µg/12 µg in patients with symptomatic COPD at risk of exacerbations. A subset participated for 52 weeks. Patient-reported assessments were: Evaluating Respiratory Symptoms in COPD? (E-RS: COPD), St George’s Respiratory Questionnaire (SGRQ) for COPD, COPD Assessment Test (CAT), baseline and transitional dyspnea indices (TDI) and daily and global anchor questions for activity limitation.

Results

FF/UMEC/VI showed greater reductions from baseline in 4-weekly mean E-RS: COPD total and all subscale scores compared with BUD/FOR; differences were statistically significant (P < 0.05) at each time period. FF/UMEC/VI also demonstrated greater improvements from baseline at weeks 4 and 24 in SGRQ domain scores and TDI focal score compared with BUD/FOR. At weeks 4 and 24, improvements greater than the minimal clinically important difference from baseline were observed in CAT score with FF/UMEC/VI, but not BUD/FOR; differences were statistically significant (P ≤ 0.003).

Conclusion

These findings demonstrate sustained daily symptom and HRQoL benefits of FF/UMEC/VI versus BUD/FOR. The inclusion of the CAT may provide data that are readily generalizable to everyday clinical practice.

Trial registration

ClinicalTrials.gov number: NCT02345161.

Funding

GSK.

     

Ethical implications of home telecare for older people: a framework derived from a multisited participative study

Context

Telecare and telehealth developments have recently attracted much attention in research and service development contexts, where their evaluation has predominantly concerned effectiveness and efficiency. Their social and ethical implications, in contrast, have received little scrutiny.

Objective

To develop an ethical framework for telecare systems based on analysis of observations of telecare‐in‐use and citizens’ panel deliberations.

Design

Ethnographic study (observation, work shadowing), interviews, older citizens’ panels and a participative conference.

Setting

Participants’ homes, workplaces and familiar community venues in England, Spain, the Netherlands and Norway 2008–2011.

Results

Older respondents expressed concerns that telecare might be used to replace face‐to‐face/hands‐on care to cut costs. Citizens’ panels strongly advocated ethical and social questions being considered in tandem with technical and policy developments. Older people are too often excluded from telecare system design, and installation is often wrongly seen as a one‐off event. Some systems enhance self‐care by increasing self‐awareness, while others shift agency away from the older person, introducing new forms of dependency.

Conclusions

Telecare has care limitations; it is not a solution, but a shift in networks of relations and responsibilities. Telecare cannot be meaningfully evaluated as an entity, but rather in the situated relations people and technologies create together. Characteristics of ethical telecare include on‐going user/carer engagement in decision making about systems: in‐home system evolution with feedback opportunities built into implementation. System design should be horizontal, ‘two‐way’/interactive rather than vertical or ‘one‐way’. An ethical framework for telecare has been developed from these conclusions (Table 1).     

In vivo Doppler optical coherence tomography of mucocutaneous telangiectases in hereditary hemorrhagic telangiectasia

BACKGROUND: Hereditary hemorrhagic telangiectasia is characterized by mucocutaneous telangiectases and visceral arteriovenous malformations. Knowledge is limited concerning the development hemodynamics of mucocutaneous telangiectases. Doppler optical coherence tomography can demonstrate microvascular blood flow at flow rates as low as 20 microm/second, which is up to approximately 100 times more sensitive than Doppler US. The aims of this study were to collect in vivo Doppler optical coherence tomography images of mucocutaneous telangiectases and normal surrounding mucosa and skin, and to gain experience for an in vivo GI endoscopic study. It was hypothesized that visibly normal areas may have occult telangiectases and that mucocutaneous telangiectases that have bled may have a higher rate of blood flow than mucocutaneous telangiectases with no history of bleeding. METHODS: Twelve patients with hereditary hemorrhagic telangiectasia and mucocutaneous telangiectases were studied. Two to 3 visible mucocutaneous telangiectases on the digits, lips, and tongue were imaged with Doppler optical coherence tomography, along with visually normal surrounding areas at each site. The Doppler optical coherence tomography images were obtained in 0.5 second by using 1310 nm light. RESULTS: A total of 67 mucocutaneous telangiectases from the 12 patients were imaged (38 digit, 16 lip, 13 tongue). Blood flow was demonstrated within every mucocutaneous telangiectasis imaged. Doppler optical coherence tomography did not identify any abnormal vasculature within visually normal areas. Mucocutaneous telangiectases with a history of bleeding (n = 18) were situated closer to the surface, compared with mucocutaneous telangiectases with no bleeding history (n = 49), but there was no difference in the Doppler flow appearance. CONCLUSIONS: Visually normal areas in patients with hereditary hemorrhagic telangiectasia did not appear to have abnormal vasculature. Mucocutaneous telangiectases with a history of bleeding were more superficial but were otherwise similar to mucocutaneous telangiectases with no bleeding history.     

Attachment style and coping in relation to posttraumatic stress disorder symptoms among adults living with HIV/AIDS

Research indicates that a significant proportion of people living with HIV/AIDS report symptoms of posttraumatic stress disorder (PTSD). Moreover, attachment style has been associated with psychological and behavioral outcomes among persons living with HIV/AIDS. Attachment style may influence the ability to cope with traumatic stress and affect PTSD symptoms. To examine the association between attachment style and coping with PTSD symptoms, we assessed 94 HIV-positive adults on self-report measures of posttraumatic stress, coping, and attachment style. In multiple regression analysis, avoidant attachment and emotion-focused coping were positively and significantly associated with greater PTSD symptomatology. Support was also found for the moderating effects of avoidant and insecure attachment styles on emotion-focused coping in relation to greater PTSD symptoms. Taken altogether, these results suggest that interventions that develop adaptive coping skills and focus on the underlying construct of attachment may be particularly effective in reducing trauma-related symptoms in adults living with HIV/AIDS.     

Visual Memory Deficits: A Plausible Cause of Developmental Dyslexia? Evidence from a Single Case Study

Abstract

This paper presents the case of JAS, a developmental dyslexic who had largely resolved her reading problems as an undergraduate student. However, testing revealed that JAS had subtle reading deficits, having difficulty with low-frequency irregular words and with the comprehension of written homophones. In contrast, her phonological reading strategies were normal. JAS's reading deficit was accompanied by serious spelling problems; she showed a marked tendency to spell phonologically, although with reference to some word-specific knowledge.

JAS's reading and spelling difficulties were accompanied by significant visual memory deficits although phonological processing was relatively good. It is argued that visual memory impairments have prevented JAS from establishing detailed orthographic representations in a lexical system. In the absence of these, the operation of the system for reading is faulty; for spelling, which requires die use of full orthographic cues, there are serious consequences.     

The match-play running performance of elite Camogie players across halves of play

Sport Sciences for Health - Camogie is one of the most popular female sports in Ireland, yet the demands of match-play are unknown. The current study aimed to examine the match-play running...