33 research outputs found

    Measures of treatment burden in dialysis: A scoping review

    Get PDF
    2023 The Authors. Journal of Renal Care published by John Wiley & Sons Ltd on behalf of European Dialysis & Transplant Nurses Association/European Renal Care Association. This is an open access article distributed under the terms of the Creative Commons Attribution License (CC BY), https://creativecommons.org/licenses/by/4.0/Background Dialysis is a life-sustaining treatment for patients with advanced kidney failure, but it is extremely burdensome. Despite this, there are very few tools available to assess treatment burden within the dialysis population. Objective To conduct a scoping review of generic and disease-specific measures of treatment burden in chronic kidney disease, and assess their suitability for use within the dialysis population. Design We searched CINAHL, MEDLINE and the Cochrane Library for kidney disease-specific measures of treatment burden. Studies were initially included if they described the development, validation or use of a treatment burden measure or associated concept (e.g., measures of treatment satisfaction, quality of life, illness intrusiveness, disease burden etc.) in adult patients with chronic kidney disease. We also updated a previous scoping review exploring measures of treatment burden in chronic disease to identify generic treatment burden measures. Results One-hundred and two measures of treatment burden or associated concepts were identified. Four direct measures and two indirect measures of treatment burden were assessed, using adapted established criteria, for suitability for use within the dialysis population. The researchers outlined eight key dimensions of treatment burden: medication, financial, administrative, lifestyle, health care, time/travel, dialysis-specific factors, and health inequality. None of the measures adequately assessed all dimensions of treatment burden. Conclusion Current measures of treatment burden in dialysis are inadequate to capture the spectrum of issues that matter to patients. There is a need for dialysis-specific burdens and health inequality to be assessed when exploring treatment burden to advance patient care.Peer reviewe

    Impact of incremental initiation of haemodialysis on mortality: a systematic review and meta-analysis

    Get PDF
    ©2022 The Author(s). Published by Oxford University Press on behalf of the ERA. This is an open-access article distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 International License (CC BY-NC), https://creativecommons.org/licenses/by-nc/4.0/Background Incremental haemodialysis initiation entails lower sessional duration and/or frequency than the standard 4 h thrice-weekly approach. Dialysis dose is increased as residual kidney function (RKF) declines. This systematic review evaluates its safety, efficacy and cost-effectiveness. Methods We searched MEDLINE, EMBASE, CINAHL and the Cochrane Library databases from inception to 27 February 2022. Eligible studies compared incremental haemodialysis (sessions either fewer than three times weekly or of duration Results A total of 644 records were identified. Twenty-six met the inclusion criteria, including 22 cohort studies and two randomized controlled trials (RCTs). Sample size ranged from 48 to 50 596 participants (total 101 476). We found no mortality differences (hazard ratio = 0.99; 95% CI 0.80–1.24). Cohort studies suggested similar hospitalization rates though the two small RCTs suggested less hospitalization after incremental initiation (relative risk = 0.31; 95% CI 0.18–0.54). Data on other treatment-emergent adverse events and quality of life was limited. Observational studies suggested reduced loss of RKF in incremental haemodialysis. This was not supported by RCT data. Four studies reported reduced costs of incremental treatments. Conclusions Incremental initiation of haemodialysis does not confer greater risk of mortality compared with standard treatment. Hospitalization may be reduced and costs are lower.Peer reviewe

    Mental health, quality of life and self-management behaviours:online evaluation of inflammatory arthritis patients over 1 year of COVID-19 lockdowns

    Get PDF
    Objective: Patients with inflammatory arthritis were especially vulnerable to the psychosocial and health impacts of coronavirus disease 2019 (COVID-19) and the lockdowns. This study investigated the impact of these changes on mental health, physical health and quality of life for inflammatory arthritis patients over 1 year following the initial lockdown in the UK. Methods: Three hundred and thirty-eight participants with inflammatory arthritis completed an ambidirectional study consisting of online questionnaires at four time points for 1 year. The questionnaires assessed demographic information, inflammatory arthritis condition, mental health, physical symptoms, self-management behaviours, COVID-19 status and impacts. Means, linear regressions and structural equation modelling for mediations were conducted over 12 months. Results: Physical health concerns peaked during June 2020, then declined, but did not return to baseline. Depression was associated with worse quality of life at baseline, as shown by the beta coefficient, (β= 0.94, P &lt; 0.01), September (β = 0.92, P &lt; 0.01), November (β= 0.77, P &lt; 0.01) and 1 year (β = 0.77, P &lt; 0.01). Likewise, anxiety was associated with worse quality of life at baseline (β = 1.92, P &lt; 0.01), September (β = 2.06, P &lt; 0.01), November (β = 1.66, P = 0.03) and 1 year (β = 1.51, P = 0.02). The association between depression and quality of life was mediated by physical activity (β= 0.13, P &lt; 0.01) at baseline. The association between anxiety and quality of life was also mediated by physical activity (β = 0.25, P = 0.04) at baseline. Conclusion: Physical health continued to be worse 1 year later compared with before the COVID-19 lockdowns in patients with inflammatory arthritis. Mental health showed long-Term effects on quality of life, with an impact for ≥12 months. Lastly, physical activity mediated between mental health and quality of life in the short term.</p

    Non-parental Adults and Sexual Health Behaviors Among Young Minority Men: A Qualitative Examination

    Get PDF
    Young Black and Latino sexual minority men (YBLSM) exhibit disproportionately high rates of negative sexual health outcomes, including HIV and other sexually transmitted infections, compared to other groups, partly due to relatively higher rates of exposure to a host of socio-structural risk factors (e.g., unstable housing and under-employment). However, an under-studied interpersonal resource exists for many YBLSM, non-parental adults (NPAs, i.e., adults who act as role models and provide social support), who may be able to influence contextual (e.g., unemployment) and individual (e.g., reduced health expectations) factors underlying sexual health disparities. Aims: This study sought to examine the role of NPAs in factors that affect sexual health behaviors and in supporting those health behaviors directly, among YBLSM living in a mid-sized city in the southern United States. A total of n=20 participants, n=10 YBLSM (ages 16 to 22), and n=10 NPAs (ages 26 to 52) were interviewed using semi-structured guides to examine NPA involvement in the lives of YBLSM from both sides of the relationship. The research team used a framework analysis approach to iteratively identify and define meaningful codes and sub-codes. Both YBLSM and NPAs described NPAs helping YBLSM through role modeling and social support in a variety of areas found to affect sexual health behaviors, such as housing instability and psychological distress, as well as in specific behaviors, such as condom use and HIV medication adherence. Given the multiple socio-structural obstacles facing YBLSM and their multifaceted relationships with NPAs, NPAs may be a promising resource to help address these impediments to health. Partnering more intentionally with NPAs is a potentially promising strategy to help reduce HIV-related disparities affecting YBLSM that is worthy of additional empirical attention

    Internet use for family carers of people with intellectual disabilities: A literature review and thematic synthesis

    Get PDF
    Being a family carer can be rewarding but can also lead to mental and physical exhaustion as well as feelings of social exclusion and isolation. Research has shown that the use of the Internet and online forums can provide an immediate place to find information and reassurance and that forum use can be an empathetic place to share experiences and seek emotional support. This article details a systematic literature search of research on carers of people with intellectual disabilities and/or autism using the Internet. A thematic synthesis of the resulting papers identified that online forums give carers a sense of agency by providing a place to go for informational support that may not be elsewhere. Carers also enjoyed the safe community of solidarity and emotional support that online forums provide. An important finding is the lack of published papers in this area with the inclusion of just eight papers

    'Why don't you try it again?' A comparison of parent led, home based interventions aimed at increasing children's consumption of a disliked vegetable

    Get PDF
    Previous research suggests that the use of modelling and non-food rewards may be effective at increasing tasting, and consequential liking and acceptance, of a previously disliked food. Although successful school-based interventions have been developed, there is a lack of research into home-based interventions using these methods. This study aimed to develop and investigate the efficacy of a parent led home-based intervention for increasing children's acceptance of a disliked vegetable. A total of 115 children aged 2-4 years were allocated to one of four intervention groups or to a no-treatment control. The four intervention conditions were: repeated exposure; modelling and repeated exposure; rewards and repeated exposure; or modelling, rewards and repeated exposure. Children in all of the intervention conditions were exposed by a parent to daily offerings of a disliked vegetable for 14 days. Liking and consumption of the vegetable were measured pre and post-intervention. Significant increases in post-intervention consumption were seen in the modelling, rewards and repeated exposure condition and the rewards and repeated exposure condition, compared to the control group. Significant post-intervention differences in liking were also found between the experimental groups. Liking was highest (>60%) in the modelling, rewards and repeated exposure group and the rewards and repeated exposure group, intermediate (>26%) in the modelling and repeated exposure and repeated exposure groups, and lowest in the control group (10%). Parent led interventions based around modelling and offering incentives may present cost efficient ways to increase children's vegetable consumption
    corecore