Home haemodialysis in Ireland

Connaughton, Dervla M.; Jamal, Abeed; McWilliams, J; O’Kelly, Patrick; Ormond, John K.; Butler, Aine; McEntee, Nicholas; Tierney, Elif Seda Selamet; Lambe, G.; Denton, Mark D.; Magee, Colm; Conlon, Peter J.

doi:10.1007/s11845-012-0835-4

Cited by 8 publications

(3 citation statements)

References 14 publications

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“…Geographical region determines the dialysis site for patients and they attend their closest dialysis unit. In Ireland, the mean distance between patients’ homes and the dialysis unit at which they attend is 29 km [ 23 ]. Thus, we have no reason to believe our study sample is not representative of the general dialysis population in Ireland.…”

Section: Methodsmentioning

confidence: 99%

Patient perceptions of the challenges of recruitment to a renal randomised trial registry: a pilot questionnaire-based study

Murphy

O’Keeffe

Shea

et al. 2021

Trials

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Background Randomised controlled trials (RCTs) are the gold standard for demonstrating the efficacy of new therapies. However, issues of external validity often affect result application to real-world settings. Using registries to conduct RCTs is a reasonably new practice, but is appealing because it combines the benefits of both observational studies and RCTs. There is limited literature on patient motivators, barriers, and consent to registries for conducting RCTs. The purpose of our study was to establish the factors that motivate and/or inhibit patients from joining a registry for RCTs and to determine what information matters to patients when making an enrolment decision to participate in such a registry. Methods We conducted a cross-sectional questionnaire-based study at a dialysis centre in Southwest Ireland representing a catchment patient population of approximately 430,000. Quantitative data were coded and analysed in SPSS (v16). Descriptive statistics were produced, and open-ended questions were analysed by thematic analysis. Results Eighty-seven patients completed the questionnaire. Reasons for participation in a registry included personal and altruistic benefits. Barriers to participation were time and travel requirements associated with registry participation, data safety concerns, risks, side effects, and concerns that registry participation would impact current treatment. Although 29.8% of patients expressed concern regarding their data being stored in a registry, 79.3% were still willing to consent to have their data uploaded and stored in a registry for conducting RCTs. It was important to patients to have their GP (general practitioner) involved in the decision to participate, despite little day-to-day contact with their GP for renal dialysis management. Conclusion Challenges to recruitment to registries for RCTs exist, but addressing the identified concerns of potential participants may aid patients in making a more informed enrolment decision and may improve recruitment to registries, and by extension, to RCTs conducted using the registry.

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Section: Methodsmentioning

confidence: 99%

Patient perceptions of the challenges of recruitment to a renal randomised trial registry: a pilot questionnaire-based study

Murphy

O’Keeffe

Shea

et al. 2021

Trials

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“…Geographical region determines the dialysis site for patients and they attend their closest dialysis unit. In Ireland, the mean distance between patients' homes and the dialysis unit at which they attend is 29km (27). Thus we have no reason to believe our study sample is not representative of the general dialysis population in Ireland.…”

Section: Data Collectionmentioning

confidence: 97%

Patient Perceptions of the Challenges to Recruitment Into a Renal Rct Registry : A Pilot Questionnaire Based Study

Murphy

Shea

Long

et al. 2021

Preprint

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Background Randomised controlled trials (RCTs) are the gold standard for demonstrating the efficacy of new therapies. Despite this, nephrology trials, especially of patients with end-stage renal disease (ESRD) are much fewer in number than other medical subspecialties. Recruitment difficulties are cited as a particular challenge. Using registries to conduct RCTs is a reasonably new practice but is appealing as it combines the benefits of both observational studies and clinical trials. There is limited literature on patient motivators, barriers, and consent to these registries. The purpose of our study was to establish the factors that motivate and/or inhibit patients from joining a registry for randomised controlled trial, and to determine what information matters to patients when making an enrolment decision to participate in such a registry. MethodsWe conducted a cross-sectional questionnaire-based study at a dialysis centre in Southwest Ireland representing a catchment patient population of approximately 430,000. Quantitative data were coded and analysed in SPSS (v16). Descriptive statistics were produced, and open-ended questions were analysed by thematic analysis. Results 87 patients completed the questionnaire. Reasons for participation in the registry included personal and altruistic benefits. Barriers were time and travel requirements associated with registry participation, data safety concerns, risks, and side effects, along with concerns that registry participation would impact their current treatment. Although 29.8% of patients expressed, that they would have concerns regarding their data being stored in a registry, 79.3% of patients were still willing to consent to have their data uploaded and stored in a registry for conducting RCTs. It was important to patients to have their GP (general practitioner) involved in the decision to participate, despite little day-to-day contact with their GP for renal dialysis management. ConclusionChallenges to recruitment to registries for RCTs exist but addressing the identified concerns of potential participants may improve recruitment to registries, and by extension, to RCTs conducted using the registry.

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“…7,8 In published reports and cumulative clinical experience, the number of sessions needed to complete training requirements is 20-40 sessions, but occasionally more may be needed (see the supplement article, "Patient Selection and Training for Home Hemodialysis"). [8][9][10][11][12][13][14][15] In the anecdotal experience of the authors, the duration of training tends to be consistent across countries: those with a lower prevalence of home HD, such as the United States, report a lower number of home HD training sessions (<30) than countries with a higher prevalence of home HD patients, such as New Zealand (>30). It is possible that this relates to the higher degree of patient selection in the United States (i.e., only the most capable and motivated patients undergo home HD) and the reduced availability of "ideal patients" in New Zealand, where training needs to accommodate a more educationally and medically diverse home HD patient population.…”

Section: Number Of Home Hd Training Stations To Support the Programmentioning

confidence: 99%

The home hemodialysis hub: Physical infrastructure and integrated governance structure

Marshall

Young

Fox

et al. 2015

Hemodialysis International

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An effective home hemodialysis program critically depends on adequate hub facilities and support functions and on transparent and accountable organizational processes. The likelihood of optimal service delivery and patient care will be enhanced by fit-for-purpose facilities and implementation of a well-considered governance structure. In this article, we describe the required accommodation and infrastructure for a home hemodialysis program and a generic organizational structure that will support both patient-facing clinical activities and business processes.

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Home haemodialysis in Ireland

Abstract: Home haemodialysis is a community-based therapy, offering an alternative to conventional in-centre haemodialysis in a select patient population.

Cited by 8 publications

References 14 publications

Patient perceptions of the challenges of recruitment to a renal randomised trial registry: a pilot questionnaire-based study

Patient perceptions of the challenges of recruitment to a renal randomised trial registry: a pilot questionnaire-based study

Patient Perceptions of the Challenges to Recruitment Into a Renal Rct Registry : A Pilot Questionnaire Based Study

The home hemodialysis hub: Physical infrastructure and integrated governance structure

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