Background. A reliable and valid instrument printed in English that measures self-management for adults with vascular diseases receiving hemodialysis therapy was not found in the literature. The Vascular Disease Self-Management Instrument (VSMI) was developed to support the measurement and assessment of self-management. Objectives. The primary objective was to assess the feasibility of the study methods to develop and explore the psychometric properties of the Vascular Disease Self-Management Instrument (VSMI) for adults receiving hemodialysis therapy. Feasibility outcomes included recruitment, consent and completion rates. The secondary objective was to begin to explore the reliability (internal consistency and test-retest), and construct validity using exploratory factor analysis and criterion-related validity. Method. This feasibility study used seminal work (Thabane et al., 2010) and clinical expertise to determine feasibility outcomes. Examination of psychometric properties was based on Streiner & Norman (2008). Results. Of the 267 eligible patients, a total of 136 patients were recruited into the study. The consent rate was 51% and completion rate was 32% for the test-retest analysis. Study participants were primarily male (61%), diagnosed with chronic kidney disease for 12 years and receiving hemodialysis therapy for 6 years. Half (50%) the participants were at moderate risk for psychological distress and used avoidant-oriented coping. Preliminary psychometric analysis suggested good reliability (Cronbach’s alpha = 0.945) and stability (Intraclass correlation coefficient = 0.927, p <0.0001). The results of the exploratory factor analysis indicated four main factors comprised the self-management instrument including collaborative partnerships, self-advocacy, self-monitoring and normalcy. Preliminary evidence of criterion-related validity demonstrated a significant positive relationship between task-orientated coping and self-management. Conclusion. Feasibility outcomes were successfully met. Preliminary evidence suggests that the VSMI has the potential to become a reliable and valid instrument. A full-scale psychometric evaluation with a sample that includes adults receiving peritoneal dialysis is needed to support utilization of the VSMI in research and clinical practice. / Dissertation / Doctor of Philosophy (PhD) / Background: Adults receiving dialysis therapy must engage in self-management of their illnesses. A questionnaire on self-management activities based on the individuals’ experiences would help health care providers to identify areas where people struggle. This information could be used to develop programs that support self-management. What Did We Learn: A total of 136 people took part in the study. The development and testing of a self-management questionnaire for adults undergoing hemodialysis is a worthwhile and reasonable goal. The questionnaire provided people with the opportunity to describe their self-management activities. Half the people that participated in the study were at risk for experiencing anxiety and depression and tried to avoid stress. Conclusions: The questionnaire would assist health care providers to engage in future research projects and develop programs and resources that help people more independently manages their illnesses.

Infection is a leading cause of death in hemodialysis patients, partly due to dysfunctional immunity. Frequent dialysis therapy improves patient outcomes and quality of life. We hypothesize that extended home hemodialysis (EHHD) also improves immune function compared to conventional in-hospital hemodialysis (CHD); therefore, we designed a prospective matching-cohort clinical study to assess serum inflammatory markers and the functional capacity of monocyte-derived dendritic cells (MDDCs) and T-lymphocytes. Serum CRP was decreased in EHHD patients suggesting that extended dialysis may decrease inflammatory solute/cytokine levels. Compared to controls, MDDCs from hemodialysis patients had similar endocytic capacity, expression of co-stimulatory molecules, and T-cell activation capacity. However, CHD was associated with the highest expression of CD83 and CD40. Activated T-cells in CHD patients also produced significantly more immunosuppressive IL-10 compared to EHHD patients and controls. Therefore, EHHD may improve immune function by decreasing inflammation, MDDC pre-activation, and synthesis of immunosuppressive cytokines.

Infection is a leading cause of death in hemodialysis patients, partly due to dysfunctional immunity. Frequent dialysis therapy improves patient outcomes and quality of life. We hypothesize that extended home hemodialysis (EHHD) also improves immune function compared to conventional in-hospital hemodialysis (CHD); therefore, we designed a prospective matching-cohort clinical study to assess serum inflammatory markers and the functional capacity of monocyte-derived dendritic cells (MDDCs) and T-lymphocytes. Serum CRP was decreased in EHHD patients suggesting that extended dialysis may decrease inflammatory solute/cytokine levels. Compared to controls, MDDCs from hemodialysis patients had similar endocytic capacity, expression of co-stimulatory molecules, and T-cell activation capacity. However, CHD was associated with the highest expression of CD83 and CD40. Activated T-cells in CHD patients also produced significantly more immunosuppressive IL-10 compared to EHHD patients and controls. Therefore, EHHD may improve immune function by decreasing inflammation, MDDC pre-activation, and synthesis of immunosuppressive cytokines.

The lack of digital and easily accessible information for home hemodialysis patients leads to a disinclination of using the provided manuals. This problem could potentially be solved with a user-friendly app, where all information and communication with the healthcare providers could take place. Hence, leading to them feeling better prepared to take charge of their own treatment. The purpose of this thesis is to provide a minimum viable product of a mobile application to facilitate treatment for home hemodialysis patients. The app was developed using the programming language SwiftUI. Information was collected from patients with home hemodialysis treatment through interviews conducted in their homes.  The mobile application enables patients to access the manual and failure identification codes through a search bar. It also provides digital checklists, dialysis protocol and symptom follow-up. The healthcare providers can then access the dialysis protocol and symptom follow-up through remote patient monitoring. A chat function allows patients to contact nurses. The mobile application fulfills the clients’ requests and with additional work it could be fully operational. / Bristen på digital och lättåtkomlig information för patienter med hemhemodialys leder till en ovilja att använda manualer och felkoder. En lösning på detta problem skulle kunna vara att utveckla en användarvänlig app som innehåller all nödvändig information, samt ett kommunikationsverktyg mellan patient och vårdpersonal. Syftet med detta examensarbete är att skapa en minsta gångbar produkt i form av en app för att underlätta behandlingen för patienter med hemhemodialys. Appen utvecklades med programmeringsspråket SwiftUI. Information hämtades från patienter genom utförda hemintervjuer.  Den mobila applikationen ger patienter åtkomst till manualen samt felkoderna genom en sökruta. Den innehåller även digitala checklistor, dialysprotokoll och symtomuppföljning. Vårdpersonal kan genom appen få tillgång till patienters dialysprotokoll och symtomuppföljning genom fjärrövervakning. Via chatten kan patienter kontakta sjukvårdspersonal. Applikationen uppfyller uppdragsgivarens önskemål om funktionaliteter. Om fortsatt arbete genomförs kan appen användas för att ge patienterna stöd i sin egenvård. / Nej

Les modalités de dialyse à domicile, soit la dialyse péritonéale (DP) et l’hémodialyse à domicile (HDD), offrent plusieurs avantages aux patients avec insuffisance rénale terminale (IRT), que ce soit par rapport à la qualité de vie ou à une diminution des complications liées à l’IRT. Peu de données sont toutefois disponibles quant aux répercussions cliniques de l’initiation de la thérapie de suppléance rénale via la DP ou l’HDD et de l’optimisation subséquente du traitement à domicile. Le présent mémoire visait donc à répondre aux trois questions suivantes soit (1) la comparaison entre la survie des patients débutant la thérapie de suppléance rénale par une ou l’autre des modalités à domicile, (2) l’évaluation du modèle de dialyse à domicile intégrée (c’est la dire l’initiation de la suppléance rénale en DP avec un transfert subséquent en HDD) et (3) l’évaluation des prédicteurs dudit modèle de dialyse à domicile intégrée. L’évaluation de 11 416 patients ayant débuté la suppléance rénale en Australie et Nouvelle-Zélande entre 2000 et 2012 a montré une association entre une mortalité globale inférieure chez les patients traités par HDD comparativement à ceux traités par DP (rapport des risques [hazard ratio - HR] 0.47, intervalle de confiance [IC] de 95%, 0.38-0.59). Par contre, les patients ayant débuté la suppléance rénale en DP et ayant ensuite été transférés en HDD (modèle de dialyse à domicile intégrée) avaintt une survie en dialyse à domicile similaire à ceux directement traités par l’HDD (HR 0.92, IC de 95%, 0.52-1.62). Finalement, les caractéristiques démographiques de base (jeune âge, sexe masculin, ethnie), les comorbidités, la cause de l’insuffisance rénale terminale, la durée du traitement et la raison de l’arrêt de la DP étaient des prédicteurs du modèle de dialyse à domicile intégrée. / Treatment of end-stage renal disease with home dialysis modalities (peritoneal dialysis [PD] and home hemodialysis [HHD]) is associated with significant patient-related benefits, including improved quality of life, greater autonomy and lower rates of medical complications. Although home dialysis is being increasingly promoted internationally, little data has been published to evaluate outcomes of patients treated with PD and HDD at time of renal replacement therapy (RRT) initiation and evaluate the optimal home dialysis treatment pattern. The current project specifically aimed to answer the following questions: (1) what is the survival associated with initiation of RRT with PD or HDD, (2) what is the survival associated with the integrated home dialysis model (PD with subsequent transfer to HHD) compared to PD or HDD treatment initially, (3) what are the predictors associated with the integrated home dialysis model. The first study included 11 416 incident dialysis patients from Australia and New Zealand between 2000 and 2012. Treatment with HHD at start of RRT was associated with a lower mortality compared to initial treatment with PD (hazard ratio [HR] 0.47, 95% confidence interval [CI] 0.38-0.59). The second study assessed the integrated home dialysis model per se and showed a similar mortality among patients treated with the integrated home model (PD with transfer to HHD after PD ending) and patients treated with HHD from start of RRT (hazard ratio [HR] 0.92, 95% confidence interval [CI] 0.52-1.62). Finally, the third study assessed the predictors of the integrated home dialysis model and identified baseline characteristics such as lower age, male sex, race, cause of end-stage renal disease, comorbidities and duration of PD therapy as potential predictors of a transfer from PD to HHD.

Avec la croissance continue du nombre de patients souffrant d’insuffisance rénale terminale dans le monde, dans un contexte de ressources limitées des soins de santé, beaucoup d’emphase est mise sur l’importance de favoriser les modalités de dialyse à domicile, soit la dialyse péritonéale et l’hémodialyse à domicile (HDD). Toutefois, l’HDD est encore très peu utilisée, notamment au Canada. Ce mémoire visait à identifier pour qui, pourquoi et comment il est possible de favoriser l'utilisation de l'HDD dans nos milieux cliniques en se basant sur l'expérience de l'Australie et la Nouvelle-Zélande (ANZ), où le recours à l’HDD est le plus haut dans le monde, afin d’en tirer des leçons qui pourraient être transposées au modèle canadien. Ceci pourrait favoriser l’amélioration des soins des patients et, dans un deuxième temps, réduire les besoins en ressources humaines et les coûts associés aux thérapies de remplacement rénal. Le registre Australia and New Zealand Dialysis & Transplantation (ANZDATA) a été utilisé pour évaluer divers aspects de l’HDD en ANZ de 1997 à 2017. Tout d’abord, la présence d’un effet de centre dans le recours à la dialyse à domicile a été identifiée, démontrant que des caractéristiques, tant au niveau des patients que des centres, étaient responsables de la variabilité dans le taux d’utilisation d’HDD notée entre les centres de dialyse. Ensuite, il a été démontré qu’il n’existait pas d’effet de centre dans la durée de traitement d’hémodialyse, tant à domicile qu’en centre, mais que la variabilité de cette durée était principalement due aux caractéristiques propres aux patients, ainsi qu’à des pratiques variant entre les états/pays, et ce, de manière beaucoup plus notable en HDD. En effet, une plus grande flexibilité est offerte par cette modalité, qui est beaucoup moins affectée par la limitation des ressources que l’hémodialyse en centre. Finalement, il a été démontré que l’HDD était potentiellement une alternative équivalente à la transplantation rénale au niveau de la survie des patients dans le cas d’un greffon reçu d’un donneur à critères étendus. / With the continued growth in the number of patients with end-stage renal disease around the world, in a context of limited healthcare resources, much emphasis is being placed on the importance of promoting home dialysis modalities, namely peritoneal dialysis and home hemodialysis (HHD). However, HHD is still underutilized, especially in Canada. This thesis aimed to identify for whom, why and how it is possible to promote the use of HHD based on the experience of Australia and New Zealand (ANZ), where the use of HHD is the highest in the world, to draw lessons that could be transposed to the Canadian model. The Australia and New Zealand Dialysis & Transplantation (ANZDATA) registry was used to assess various aspects of HHD in ANZ from 1997 to 2017. First, the presence of a center effect in the use of home dialysis was identified, demonstrating that both patient- and center-level characteristics were responsible for the variability noted in the rate of HHD use between dialysis centers. We then showed that there was no center effect in the duration of hemodialysis treatment, neither at home nor in center, but that the variability of this duration was mainly due to the characteristics of the patients, as well as to varying practices between states/countries, and this, more notably in HHD. Indeed, greater flexibility is offered by this modality, which is much less affected by the limitation of resources than in-center hemodialysis. Finally, HHD was shown to be potentially an equivalent alternative to kidney transplantation in terms of patient survival in the case of a transplant received from an expanded criteria donor.