Quality of life in end-stage renal disease patients: Differences in patient and spouse perceptions

Ferri, Christine; Pruchno, Rachel

doi:10.1080/13607860902845558

Cited by 15 publications

(9 citation statements)

References 41 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…A tendency for proxy values to be lower than self-reported values has been previously reported [13,15] and is also found for other quality of life measures [41]; however, some studies have found this tendency to be reduced in ranking exercises [42]. A tendency for proxy values to be lower than self-report may also explain why depression was associated with smaller differences between EQ-5D-S and EQ-5D-P. Depression affects the residents' overview of other aspects of their health, and so a depressed resident is more likely to view their health as poor, in line with the proxy's assessment.…”

Section: Discussionsupporting

confidence: 76%

The agreement between proxy and self-completed EQ-5D for care home residents was better for index scores than individual domains

Devine

Taylor

Spencer

et al. 2014

Journal of Clinical Epidemiology

View full text Add to dashboard Cite

ObjectiveProxy measures are an alternative source of data for care home residents who are unable to complete the health utility measure, but the agreement levels between residents and care home staff for the EQ-5D have not been investigated previously. The objective of the present study was to examine the inter-rater agreement levels for the reporting of EQ-5D by care home residents and staff, adjusting for the impact of clustering.Study Design and SettingThe data consist of EQ-5D scores for 565 pairs of care home residents and proxies and quality-adjusted life-years (QALYs) for 248 pairs. Cluster-adjusted agreement was compared for the domains, index scores, and QALYs from the EQ-5D. Factors influencing index score agreement are also described.ResultsThe results show poor to fair agreement at the domain level (cluster-adjusted Kappa −0.03 to 0.26) and moderate agreement at the score level (cluster-adjusted intra-class correlation coefficient [ICC] 0.44–0.50) and for QALYs (cluster-adjusted ICC 0.59). A higher likelihood of depression and lower cognitive impairment were both associated with smaller discrepancy between proxy and self-completed scores.ConclusionProxies appear to be an acceptable source of data for index scores and QALYs but may be less reliable if individual domains are considered.

show abstract

Section: Discussionsupporting

confidence: 76%

The agreement between proxy and self-completed EQ-5D for care home residents was better for index scores than individual domains

Devine

Taylor

Spencer

et al. 2014

Journal of Clinical Epidemiology

View full text Add to dashboard Cite

show abstract

“…First, it has been acknowledged that the modality may alter the interview and, more specifically, the use of telephone interviews for qualitative research is considered by some to reduce the quality of data obtained [ 70 ]. However, this method has been used successfully in previous research both during the current pandemic and in previous research into QoL of adults with ESRD [ 71 , 72 ]. Nonetheless, the choice of telephones, as opposed to online video platforms, was informed by patient and public involvement during the trial design.…”

Section: Discussionmentioning

confidence: 99%

Understanding the Impact of Initial COVID-19 Restrictions on Physical Activity, Wellbeing and Quality of Life in Shielding Adults with End-Stage Renal Disease in the United Kingdom Dialysing at Home versus In-Centre and Their Experiences with Telemedicine

Antoun

Brown

Jones

et al. 2021

IJERPH

View full text Add to dashboard Cite

Early in the coronavirus-2019 (COVID-19) containment strategy, people with end-stage renal disease (ESRD) were identified as extremely clinically vulnerable and subsequently asked to ‘shield’ at home where possible. The aim of this study was to investigate how these restrictions and the transition to an increased reliance on telemedicine within clinical care of people living with kidney disease impacted the physical activity (PA), wellbeing and quality of life (QoL) of adults dialysing at home (HHD) or receiving in-centre haemodialysis (ICHD) in the UK. Individual semistructured telephone interviews were conducted with adults receiving HHD (n = 10) or ICHD (n = 10), were transcribed verbatim and, subsequently, thematically analysed. As result of the COVID-19 restrictions, PA, wellbeing and QoL of people with ESRD were found to have been hindered. However, widespread support for the continued use of telemedicine was strongly advocated and promoted independence and satisfaction in patient care. These findings highlight the need for more proactive care of people with ESRD if asked to shield again, as well as increased awareness of safe and appropriate PA resources to help with home-based PA and emotional wellbeing.

show abstract

“…While the non-equivalence of self-report and proxy report is acknowledged, some studies have found that the systematic difference between average self-reported and proxy-reported quality of life score is modest [16, 18, 41, 53, 64–66] or not significant [55, 67–69]. In which case, if the development of a proxy version of a quality of life instrument was primarily motivated by the minimisation of ‘proxy bias’ or the reduction of the inter-proxy gap [45], it would be reasonable to question the usefulness of developing a proxy version if the inter-proxy gap is negligible in large survey data collections.…”

Section: Discussionmentioning

confidence: 99%

Exploring the views of being a proxy from the perspective of unpaid carers and paid carers: developing a proxy version of the Adult Social Care Outcomes Toolkit (ASCOT)

Caiels

Rand

Crowther

et al. 2019

BMC Health Serv Res

View full text Add to dashboard Cite

Background Outcomes-based policy and administration of public services present a compelling argument for the value of outcomes data. However, there are a number of challenges inherent in collecting these data from people who are unable to complete a paper-based survey or interview due to cognitive or communication impairments. In this paper, we explore the views of being a proxy from the perspective of unpaid carers and paid carers who may be asked to act as a proxy on behalf of the person(s) they care for. We consider the key issues that need to be addressed when adapting an instrument designed to measure social care outcomes, the Adult Social Care Outcomes Tool (ASCOT), into a proxy-report tool. Methods Participants took part in either a focus group (35 paid carers in eight focus groups), or a one-to-one interview (eight unpaid carers). All participants were recruited via carer organisations and care providers. Transcripts, field notes and audio data collected during focus groups and interviews were analysed using a thematic framework approach. Results Participants agreed that any person acting as a proxy would need to be very familiar with the care recipient, as well as their needs and care provision. A number of provisions for proxy respondents were proposed to improve face validity and acceptability of completing a questionnaire by proxy, and to ensure that any potential bias is reduced in the design of the questionnaire. These included: providing two sets of response options for each proxy perspective (the proxy themselves and the proxy view of how they think the care recipient would respond); a comments box to help people explain why they have selected a given response option (especially where these indicate unmet need); and providing clear guidance for the proxy respondent on how they should complete the questionnaire. Conclusions This study has shown some of the challenges involved in assessing outcomes by proxy and explored some potential ways these can be mitigated. The findings highlight the benefits of developing and testing proxy measures in a robust way to widen participation in social care research. Electronic supplementary material The online version of this article (10.1186/s12913-019-4025-1) contains supplementary material, which is available to authorized users.

show abstract

Quality of life in end-stage renal disease patients: Differences in patient and spouse perceptions

Cited by 15 publications

References 41 publications

The agreement between proxy and self-completed EQ-5D for care home residents was better for index scores than individual domains

The agreement between proxy and self-completed EQ-5D for care home residents was better for index scores than individual domains

Understanding the Impact of Initial COVID-19 Restrictions on Physical Activity, Wellbeing and Quality of Life in Shielding Adults with End-Stage Renal Disease in the United Kingdom Dialysing at Home versus In-Centre and Their Experiences with Telemedicine

Exploring the views of being a proxy from the perspective of unpaid carers and paid carers: developing a proxy version of the Adult Social Care Outcomes Toolkit (ASCOT)

Contact Info

Product

Resources

About