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BACKGROUND: Peritoneal dialysis (PD) is actively promoted, but increasing PD utilisation is difficult. The objective of this study was to determine if the Starting dialysis on Time, At Home, on the Right Therapy (START) project was associated with an increase in the proportion of dialysis patients receiving PD within 6 months of starting therapy. METHODS: Consecutive patients over age 18, with end-stage kidney failure, who started dialysis between 1 April 2015 and 31 March 2018 in the province of Alberta, Canada. Programmes were provided with high-quality data about the individual steps in the process of care that drive PD utilisation that were used to identify problem areas, design and implement interventions to address them, and then evaluate whether those interventions had impact. The primary outcome was the proportion of patients receiving PD within 6 months of starting dialysis. Secondary outcomes included hospitalisation, death or probability of transfer to haemodialysis (HD). Interrupted time series methodology was used to evaluate the impact of the quality improvement initiative on the primary and secondary outcomes. RESULTS: A total of 1962 patients started dialysis during the study period. Twenty-seven per cent of incident patients received PD at baseline, and there was a 5.4% (95% confidence interval: 1.5-9.2) increase in the use of PD in the province immediately after implementation. There were no changes in the rates of hospitalisation, death or probability of transfer to HD after the introduction of START. CONCLUSIONS: The approach used in the START project was associated with an increase in the use of PD in a setting with high baseline utilisation.
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INTRODUCTION: The organ donation and transplantation (ODT) system in Canada is complex and can be challenging for individuals to navigate. We thus aimed to illuminate the experiences of individuals on transplant journeys using a patient-oriented convergent parallel mixed-methods approach. METHODS: We captured data on adult patients, living donors, and caregivers on transplant journeys across Canada through an online survey (n = 935) and focus groups (n = 21). The survey was comprised of 48 questions about the individuals' experiences with the living donation and transplantation system, which were analyzed descriptively. Qualitative data were analyzed using an inductive conventional content analysis approach. RESULTS: Most participants were female (70.1%), English speaking (92.6%) and White (87.8%). Participants' experiences were represented across six key themes: holistic person-centred care, accountable care, collective impact, navigating uncertainty, connection and advocacy. Quantitative and qualitative data were integrated to identify five opportunities to improve the organ donation and transplantation system in Canada: enhancing mental health support, establishing formal peer support programmes, improving continuity of care, improving knowledge acquisition, and expanding resources and support. CONCLUSION: It is imperative that the ODT system commits to asking, listening, and learning from individuals on transplant journeys and to provide them opportunities to help improve it.
Subject(s)
Caregivers , Tissue and Organ Procurement , Adult , Humans , Female , Male , Caregivers/psychology , Canada , Living Donors/psychology , Focus GroupsABSTRACT
BACKGROUND: Modality transitions represent a period of significant change that can impact health related quality of life (HRQoL). We explored the HRQoL of adults transitioning to new or different dialysis modalities. METHODS: We recruited eligible adults (≥ 18) transitioning to dialysis from pre-dialysis or undertaking a dialysis modality change between July and September 2017. Nineteen participants (9 incident and 10 prevalent dialysis patients) completed the KDQOL-36 survey at time of transition and three months later. Fifteen participants undertook a semi-structured interview at three months. Qualitative data were thematically analyzed. RESULTS: Four themes and five sub-themes were identified: adapting to new circumstances (tackling change, accepting change), adjusting together, trading off, and challenges of chronicity (the impact of dialysis, living with a complex disease, planning with uncertainty). From the first day of dialysis treatment to the third month on a new dialysis therapy, all five HRQoL domains from the KDQOL-36 (symptoms, effects, burden, overall PCS, and overall MCS) improved in our sample (i.e., those who remained on the modality). CONCLUSIONS: Dialysis transitions negatively impact the HRQoL of people with kidney disease in various ways. Future work should focus on how to best support people during this time.
Subject(s)
Quality of Life , Renal Dialysis , Adult , Humans , Dialysis , Qualitative Research , Data AccuracyABSTRACT
Purpose of review: Diabetes affects almost a 10th of the Canadian population, and diabetic nephropathy is one of its main complications. It remains a leading cause of kidney failure despite the availability of effective treatments. Sources of information: The sources of information are iterative discussions between health care professionals and patient partners and literature collected through the search of multiple databases. Methods: Major pitfalls related to optimal diabetic nephropathy care were identified through discussions between patient partners and clinician researchers. We identified underlying factors that were common between pitfalls. We then conducted a narrative review of strategies to overcome them, with a focus on Canadian initiatives. Key findings: We identified 5 pitfalls along the diabetic nephropathy trajectory, including a delay in diabetes diagnosis, suboptimal glycemic control, delay in the detection of kidney involvement, suboptimal kidney protection, and deficient management of advanced chronic kidney disease. Several innovative care models and approaches have been proposed to address these pitfalls; however, they are not consistently applied. To improve diabetic nephropathy care in Canada, we recommend focusing initiatives on improving awareness of diabetic nephropathy, improving access to timely evidence-based care, fostering inclusive patient-centered care environment, and generating new evidence that supports complex disease management. It is imperative that patients and their families are included at the center of these initiatives. Limitations: This review was limited to research published in peer-reviewed journals. We did not perform a systematic review of the literature; we included articles that were relevant to the major pitfalls identified by our patient partners. Study quality was also not formally assessed. The combination of these factors limits the scope of our conclusions.
Motif de la revue: Le diabète touche près d'un dixième de la population canadienne et la néphropathie diabétique est l'une de ses principales complications. Le diabète demeure une cause principale d'insuffisance rénale malgré la disponibilité de traitements efficaces. Sources: Discussions itératives entre des professionnels de la santé et des patients partenaires, ainsi que la documentation recueillie à la suite d'une recherche dans plusieurs bases de données. Méthodologie: Les principaux obstacles liés aux soins optimaux en néphropathie diabétique ont été définis grâce à des discussions entre des patients partenaires et des cliniciens-chercheurs. Des facteurs sous-jacents, communs à tous ces obstacles, ont été dégagés, puis nous avons procédé à un examen narratif des stratégies visant à surmonter ces obstacles, en privilégiant les initiatives canadiennes. Principaux résultats: Cinq obstacles jalonnant la trajectoire de la néphropathie diabétique ont été identifiés, soit un retard dans le diagnostic du diabète, une régulation glycémique sous-optimale, un retard dans la détection de l'atteinte rénale, une protection rénale sous-optimale et une gestion déficiente de l'insuffisance rénale chronique de stade avancé. Plusieurs approches et modèles de soins novateurs ont été proposés pour remédier à ces obstacles, mais ils ne sont pas appliqués de façon uniforme. Pour améliorer les soins de néphropathie diabétique au Canada, nous recommandons de concentrer les initiatives visant la sensibilisation à la néphropathie diabétique, l'amélioration de l'accès en temps opportun à des soins fondés sur des données probantes, la promotion d'un environnement de soins inclusif axé sur le patient et la production de données probantes appuyant la gestion complexe de la maladie. Il est impératif que les patients et leurs familles soient au cÅur de ces initiatives. Limites: Notre revue s'est limitée aux articles publiés dans des revues examinées par des pairs. Nous n'avons pas procédé à une revue systématique de la littérature; nous avons inclus des articles pertinents pour les principaux obstacles identifiés par nos patients partenaires. La qualité des études n'a pas été évaluée officiellement. La combinaison de ces facteurs limite la portée de nos conclusions.
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BACKGROUND AND OBJECTIVES: In 2019, two Canadian provinces became the first jurisdictions in North America to pass deemed consent legislation to increase deceased organ donation and transplantation rates. We sought to explore the perspectives of the deemed consent legislation for organ donation in Canada from the viewpoint of individuals commenting on press articles. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: In this qualitative descriptive study, we extracted public comments regarding deemed consent from online articles published by four major Canadian news outlets between January 2019 and July 2020. A total of 4357 comments were extracted from 35 eligible news articles. Comments were independently analyzed by two research team members using a conventional content analysis approach. RESULTS: Commenters' perceptions of the deemed consent legislation for organ donation in Canada predominantly fit within three organizational groups: perceived positive implications of the bills, perceived negative implications of the bills, and key considerations. Three themes emerged within each group that summarized perspectives of the proposed legislation. Themes regarding the perceived positive implications of the bills included majority rules, societal effect, and prioritizing donation. Themes regarding the perceived negative implications of the bills were a right to choose, the potential for abuse and errors, and a possible slippery slope. Improving government transparency and communication, clarifying questions and addressing concerns, and providing evidence for the bills were identified as key considerations. CONCLUSIONS: If deemed consent legislation is meant to increase organ donation and transplantation, addressing public concerns will be important to ensure successful implementation.
Subject(s)
Organ Transplantation , Tissue and Organ Procurement , Humans , Canada , Qualitative Research , Informed Consent , Tissue DonorsABSTRACT
OBJECTIVES: Persons with advanced chronic kidney disease (CKD) have unique support needs associated with managing a chronic yet often silent condition, complex treatment-related decisions and care transitions. The aim of this study was to explore perspectives on how peer support could address CKD support needs and augment care. DESIGN: This study employed a qualitative descriptive methodology. Data were collected through focus groups (cofacilitated by patient partners) and semistructured interviews. SETTING: Four multidisciplinary CKD clinics across Southern Alberta, Canada. PARTICIPANTS: We purposively sampled among adult patients with advanced, non-dialysis CKD and their caregivers, as well as trained peer mentors from The Kidney Foundation of Canada's Kidney Connect programme. ANALYSIS: Transcripts were coded in duplicate, and themes were generated inductively through a thematic analysis approach. RESULTS: We conducted seven focus groups with a total of 39 patient and caregiver participants. Seven patients and caregivers who were unable to attend a focus group and 13 peer mentors participated in a telephone interview. Although patients and caregivers had limited awareness of peer support, participants acknowledged its central role in affirming their experiences and enabling confidence to live well with kidney disease. We identified four themes related to the anticipated role of peer support in addressing support needs for people with non-dialysis CKD: (1) creating connection; (2) preparing for uncertainty; (3) adapting to new realities; and (4) responsive peer support delivery. Aligning peer support access with patient readiness and existing CKD management supports can promote optimism, community and pragmatic adaptations to challenges. CONCLUSIONS: Patients, caregivers and peer mentors highlighted a unique value in the shared experiences of CKD peers to anticipate and manage disease-related challenges and confidently face a future living with kidney disease.
Subject(s)
Empathy , Renal Insufficiency, Chronic , Adult , Alberta , Caregivers , Female , Humans , Male , Qualitative Research , Renal Insufficiency, Chronic/therapyABSTRACT
BACKGROUND: Peer support complements traditional models of chronic kidney disease (CKD) care through sharing of peer experiences, pragmatic advice, and resources to enhance chronic kidney disease self-management and decision-making. As peer support is variably offered and integrated into multi-disciplinary CKD care, we aimed to characterize healthcare providers' experiences and views on peer support provision for people with non-dialysis-dependent CKD within Canada. METHODS: In this concurrent mixed methods study, we used a self-administered online survey to collect information from multi-disciplinary CKD clinic providers (e.g., nurses, nephrologists, allied health professionals) on peer support awareness, program characteristics and processes, perceived value, and barriers and facilitators to offering peer support in CKD clinics. Results were analyzed descriptively. We undertook semi-structured interviews with a sample of survey respondents to elaborate on perspectives about peer support in CKD care, which we analyzed using inductive, content analysis. RESULTS: We surveyed 113 providers from 49 clinics. Two thirds (66%) were aware of formal peer support programs, of whom 19% offered in-house peer support through their clinic. Peer support awareness differed by role and region, and most referrals were made by social workers. Likert scale responses suggested a high perceived need of peer support for people with CKD. Top cited barriers to offering peer support included lack of peer support access and workload demands, while facilitators included systematic clinic processes for peer support integration and alignment with external programs. Across 18 interviews, we identified themes related to peer support awareness, logistics, and accessibility and highlighted a need for integrated support pathways. CONCLUSIONS: Our findings suggest variability in awareness and availability of peer support among Canadian multi-disciplinary CKD clinics. An understanding of the factors influencing peer support delivery will inform strategies to optimize its uptake for people with advanced CKD.
Subject(s)
Health Personnel , Renal Insufficiency, Chronic , Allied Health Personnel , Attitude of Health Personnel , Canada , Female , Humans , Male , Renal Insufficiency, Chronic/therapyABSTRACT
BACKGROUND: Providing support is important to maintain a patient on peritoneal dialysis (PD), though its impact on outcomes has not been investigated thoroughly. We examined the association between having support and risk of a transfer to hemodialysis. METHODS: In this retrospective observational cohort study, we used data captured in the Dialysis Measurement Analysis and Reporting system about patients who started PD in Alberta, Canada, between 1 January 2013 and 30 September 2018. Support was defined as the availability of a support person in the home who was able, willing and available to provide support for PD in the patient's residence. The outcome of interest was a transfer to hemodialysis for at least 90 days. We estimated the cumulative incidence of a transfer over time accounting for competing risks and hazard ratios to summarise the association between support and a transfer. We split follow-up time as hazard ratios varied over time. RESULTS: Six hundred and eighty-three incident PD patients, median age 58 years (IQR: 47-68) and 35% female, were followed for a median of 15 months. The cumulative incidence of a transfer to hemodialysis at 24 months was 26%. Having support was associated with a reduced risk of a transfer between 3 and 12 months after the start of dialysis (HR3-12mo: 0.44; 95% CI: 0.25-0.78), but not earlier (hazard ratio (HR)<3mo: 0.96; 95% confidence interval (CI): 0.55-1.69) or later (HR>12mo: 1.19; 95% CI: 0.65-2.17). CONCLUSIONS: A transfer to hemodialysis is common. Having a support person at home is associated with a short-term protective effect after the initiation of PD.
Subject(s)
Kidney Failure, Chronic , Peritoneal Dialysis , Alberta/epidemiology , Cohort Studies , Female , Humans , Kidney Failure, Chronic/therapy , Male , Middle Aged , Renal Dialysis , Retrospective Studies , Risk FactorsABSTRACT
BACKGROUND AND AIMS: Inflammatory bowel disease (IBD) is a chronic relapsing and remitting disease with high morbidity, substantial health care costs, and increasing incidence. Fatigue is one of the most common symptoms that impacts quality of life and is a leading concern for patients with IBD. The aim of this study was to determine the global prevalence, risk factors, and impact of fatigue in adults with IBD. METHODS: A systematic review and meta-analysis was conducted. Data were retrieved from Medline, Embase, CINAHL, and PsycINFO from database inception to October 2019. A pooled prevalence of fatigue was calculated using a random-effects model. Stratified meta-analyses explored sources of between-study heterogeneity. Study quality was assessed using an adapted checklist from Downs and Black. RESULTS: The search yielded 4524 studies, of which 20 studies were included in the systematic review and meta-analysis. Overall, the studies were of good quality. The pooled prevalence of fatigue was 47% (95% confidence interval, 41%-54%), though between-study heterogeneity was high (I2 = 98%). Fatigue prevalence varied significantly by the definition of fatigue (chronic: 28%; high: 48%; P < .01) and disease status (active disease: 72%; remission: 47%; P < .01). Sleep disturbance, anxiety, depression, and anemia were the most commonly reported fatigue-related risk factors. CONCLUSIONS: The prevalence of fatigue in adults with IBD is high, emphasizing the importance of additional efforts to manage fatigue to improve the care and quality of life for patients with IBD.
Subject(s)
Inflammatory Bowel Diseases , Quality of Life , Adult , Chronic Disease , Fatigue/epidemiology , Fatigue/etiology , Humans , Inflammatory Bowel Diseases/complications , Inflammatory Bowel Diseases/epidemiology , Prevalence , Risk FactorsABSTRACT
BACKGROUND: Technique failure is an important outcome measure in research and quality improvement in peritoneal dialysis (PD) programs, but there is a lack of consistency in how it is reported. METHODS: We used data collected about incident dialysis patients from 10 Canadian dialysis programs between 1 January 2004 and 31 December 2018. We identified four main steps that are required when calculating the risk of technique failure. We changed one variable at a time, and then all steps, simultaneously, to determine the impact on the observed risk of technique failure at 24 months. RESULTS: A total of 1448 patients received PD. Selecting different cohorts of PD patients changed the observed risk of technique failure at 24 months by 2%. More than one-third of patients who switched to hemodialysis returned to PD-90% returned within 180 days. The use of different time windows of observation for a return to PD resulted in risks of technique failure that differed by 16%. The way in which exit events were handled during the time window impacted the risk of technique failure by 4% and choice of statistical method changed results by 4%. Overall, the observed risk of technique failure at 24 months differed by 20%, simply by applying different approaches to the same data set. CONCLUSIONS: The approach to reporting technique failure has an important impact on the observed results. We present a robust and transparent methodology to track technique failure over time and to compare performance between programs.
Subject(s)
Kidney Failure, Chronic , Peritoneal Dialysis , Canada , Female , Humans , Kidney Failure, Chronic/etiology , Kidney Failure, Chronic/therapy , Male , Peritoneal Dialysis/adverse effects , Renal Dialysis/methods , Treatment FailureABSTRACT
BACKGROUND: Simultaneous kidney-pancreas transplantation (SPK) has benefits for patients with kidney failure and type I diabetes mellitus, but is associated with greater perioperative risk compared with kidney-alone transplantation. Postoperative care settings for SPK recipients vary across Canada and may have implications for patient outcomes and hospital resource use. OBJECTIVE: To compare outcomes following SPK transplantation between patients receiving postoperative care in the intensive care unit (ICU) compared with the ward. DESIGN: Retrospective cohort study using administrative health data. SETTING: In Alberta, the 2 transplant centers (Calgary and Edmonton) have different protocols for routine postoperative care of SPK recipients. In Edmonton, SPK recipients are routinely transferred to the ICU, whereas in Calgary, SPK recipients are transferred to the ward. PATIENTS: 129 adult SPK recipients (2002-2019). MEASUREMENTS: Data from the Canadian Institute for Health Information Discharge Abstract Database (CIHI-DAD) were used to identify SPK recipients (procedure codes) and the outcomes of inpatient mortality, length of initial hospital stay (LOS), and the occurrence of 16 different patient safety indicators (PSIs). METHODS: We followed SPK recipients from the admission date of their transplant hospitalization until the first of hospital discharge or death. Unadjusted quantile regression was used to determine differences in LOS, and age- and sex-adjusted marginal probabilities were used to determine differences in PSIs between centers. RESULTS: There were no perioperative deaths and no major differences in the demographic characteristics between the centers. The majority of the SPK transplants were performed in Edmonton (n = 82, 64%). All SPK recipients in Edmonton were admitted to the ICU postoperatively, compared with only 11% in Calgary. There was no statistically significant difference in the LOS or probability of a PSI between the 2 centers (LOS for Edmonton vs Calgary:16 vs 13 days, P = .12; PSIs for Edmonton vs Calgary: 60%, 95% confidence interval [CI] = 0.50-0.71 vs 44%, 95% CI = 0.29-0.59, P = .08). LIMITATIONS: This study was conducted using administrative data and is limited by variable availability. The small sample size limited precision of estimated differences between type of postoperative care. CONCLUSIONS: Following SPK transplantation, we found no difference in inpatient outcomes for recipients who received routine postoperative ICU care compared with ward care. Further research using larger data sets and interventional study designs is needed to better understand the implications of postoperative care settings on patient outcomes and health care resource utilization.
CONTEXTE: La double transplantation rein-pancréas (DTRP) présente des bienfaits pour les patients atteints à la fois d'insuffisance rénale et de diabète de type I, mais elle est associée à un plus grand risque de complications périopératoires que la transplantation rénale seule. Les paramètres de soins postopératoires pour les patients ayant subi une DTRP varient à travers le Canada et peuvent avoir des répercussions sur l'évolution de l'état de santé des patients et sur l'utilisation des ressources hospitalières. OBJECTIFS: Comparer les résultats des patients recevant des soins postopératoires, soit à l'unité de soins intensifs (USI), soit à l'étage, après une double transplantation rein-pancréas. TYPE D'ÉTUDE: Étude de cohorte réalisée à partir des données administratives de santé. CADRE: Les deux centres de transplantation de l'Alberta (Calgary et Edmonton) disposent de protocoles différents en ce qui concerne les soins postopératoires courants prodigués aux receveurs d'une DTRP. À Edmonton, ces patients sont systématiquement transférés à l'USI; tandis qu'à Calgary, ils sont transférés à l'étage. SUJETS: L'étude porte sur 129 adultes ayant reçu une DTRP (2002-2019). MESURES: Les données de la Base de données sur les congés des patients de l'Institut canadien d'information sur la santé (ICIS-BDCP) ont été utilisées pour recenser les receveurs d'une DTRP (codes d'intervention) et colliger les résultats quant à la mortalité en cours d'hospitalisation, la durée du séjour initial (DSI) et l'occurrence de 16 différents indicateurs de sécurité des patients (ISP). MÉTHODOLOGIE: Nous avons suivi les receveurs d'une DTRP de la date de leur admission pour la greffe jusqu'au jour de leur premier congé de l'hôpital ou jusqu'à leur décès. Les différences entre les deux centres en ce qui concerne le DSI ont été établies à l'aide d'une régression par quantile non corrigée, et par probabilités marginales ajustées en fonction de l'âge et du sexe pour les ISP. RÉSULTATS: Aucun décès periopératoire n'est survenu et aucune différence majeure n'a été observée entre les centres quant aux caractéristiques démographiques. La majorité des interventions ont été effectuées à Edmonton (n = 82; 64 %). Tous les receveurs d'une DTRP à Edmonton ont été admis à l'USI après la chirurgie, contre seulement 11 % à Calgary. Aucune différence statistiquement significative n'a été observée quant à la durée du séjour (DSI à Edmonton par rapport à Calgary : 16 jours c. 13 jours, p = 0,12) ou à la probabilité d'un ISP (ISP à Edmonton : 60 %; IC 95 % : 0,50-0,71 contre ISP à Calgary : 44 %; IC 95 % : 0,29-0,59, p = 0,08) entre les deux centres. LIMITES: L'étude a été réalisée à partir des données administratives et est limitée par la disponibilité des variables. La faible taille de l'échantillon limite la précision des différences estimées entre les types de soins postopératoires. CONCLUSION: Après une double transplantation rein-pancréas, nous n'avons observé aucune différence entre les résultats des patients ayant reçu les soins postopératoires courants à l'USI et ceux des patients les ayant reçus à l'étage. Des études interventionnelles utilisant de plus grands ensembles de données sont nécessaires pour mieux comprendre l'incidence des soins postopératoires sur les résultats des patients et sur l'utilisation des ressources en santé.
ABSTRACT
BACKGROUND: Home hemodialysis (HHD) offers a flexible, patient-centered modality for patients with kidney failure. Growth in HHD is achieved by increasing the number of patients starting HHD and reducing attrition with strategies to prevent the modifiable reasons for loss. OBJECTIVE: Our primary objective was to describe a Canadian HHD population in terms of technique failure and time to exit from HHD in order to understand reasons for exit. Our secondary objectives include the following: (1) determining reasons for training failure, (2) reasons for early exit from HHD, and (3) timing of program exit. DESIGN: A retrospective cohort study of incident adult HHD patients between January 1, 2013-June 30, 2020. SETTING: Alberta Kidney Care South, AKC-S HHD program. PARTICIPANTS: Patients who started training for HHD in AKC-S. METHODS: A retrospective, cohort study of incident adult HHD patients with primary outcome time on home hemodialysis, secondary outcomes include reason for train failure, time to and reasons for technique failure. Cox-proportional hazard model to determine associations between patient characteristics and technique failure. The cumulative probability of technique failure over time was reported using a competing risks model. RESULTS: A total of 167 patients entered HHD. Training failure occurred in 20 (12%), at 3.1 [2.0, 5.5] weeks; these patients were older (P < .001) and had 2 or more comorbidities (P < .001). Reasons for HHD exit after training included transplant (35; 21%), death (8; 4.8%), and technique failure (24; 14.4%). Overall, the median time to HHD exit, was 23 months [11, 41] and the median time of technique failure was 17 months [8.9, 36]. Reasons for technique failure included: psychosocial reasons (37%) at a median time 8.9 months [7.7, 13], safety (12.5%) at 19 months [19, 36], and medical (37.5%) at 26 months [11, 50]. LIMITATIONS: Small patient population with quality of data limited by the electronic-based medical record and non-standardized definitions of reasons for exit. CONCLUSIONS: Training failure is a particularly important source of patient loss. Reasons for exit differ according to duration on HHD. Early interventions aimed at reducing train failure and increasing psychosocial supports may help program growth.
CONTEXTE: Pour les patients atteints d'insuffisance rénale, l'hémodialyse à domicile (HDD) offre une modalité flexible et centrée sur le patient. Une meilleure adhésion à l'HHD s'obtient en augmentant le nombre de patients initiés à cette modalité et en réduisant l'attrition grâce à des stratégies visant la prévention des causes modifiables d'abandon. OBJECTIFS: Notre principal objectif était de décrire une population canadienne de patients suivant des traitements d'HDD en ce qui concerne l'échec de la modalité et de délai avant l'abandon de l'HDD, afin de comprendre les raisons qui mènent à cet abandon. En deuxième lieu, nous souhaitions: (1) déterminer les raisons de l'échec de la formation sur la modalité, (2) les raisons de l'abandon précoce de l'HDD et (3) le moment du retrait du programme. MÉTHODOLOGIE: Il s'agit d'une étude de cohorte rétrospective portant sur les patients adultes ayant adopté l'HDD comme modalité entre le 1er janvier 2013 et le 30 juin 2020. CADRE: Le programme d'HDD AKC-S (Alberta Kidney Care South). SUJETS: Les patients ayant commencé une formation sur l'HDD avec le programme AKC-S. MÉTHODOLOGIE: Une étude de cohorte rétrospective portant sur les patients adultes traités par HDD ayant pour principal critère d'évaluation la période pendant laquelle la modalité a été adoptée par les patients. La raison de l'échec de la formation, le délai avant l'abandon de la modalité et les raisons de l'abandon ont constitué les critères d'évaluations secondaires. Un modèle de risques proportionnels de Cox a été employé pour déterminer les associations entre les caractéristiques des patients et l'abandon de la modalité. La probabilité cumulative d'abandon de la modalité au fil du temps a été rapportée à l'aide d'un modèle des risques concurrents. RÉSULTATS: Les résultats portent sur les 167 patients qui étaient passés à l'HDD. L'échec de la formation a été observé chez 20 patients (12 %) après 3,1 [2,0, 5,5] semaines; ces patients étaient plus âgés (P < .001) et présentaient au moins deux maladies concomitantes (P < .001). La transplantation (n = 35; 21 %), le décès (n = 8; 4,8 %) et l'échec de la technique (n = 24; 14,4 %) ont constitué les principales raisons d'abandon de l'HDD après la formation. Dans l'ensemble, le délai médian avant l'abandon de l'HDD était de 23 mois [11, 41] et le délai médian avant l'échec de la technique était de 17 mois [8,9, 36]. Des raisons psychosociales (37 %) après un délai médian de 8,9 mois [7,7, 13], l'innocuité (12,5 %) après 19 mois [19, 36] et des raisons médicales (37,5 %) après 26 mois [11, 50] ont expliqué l'échec de la technique. LIMITES: L'étude porte sur un faible échantillon de patients dont la qualité des données était limitée par le dossier médical électronique. Des définitions non normalisées des raisons de l'abandon limitent également les résultats. CONCLUSION: L'échec de la formation est un facteur qui joue un rôle particulièrement important dans l'abandon de l'HDD par les patients. Les raisons de cet abandon varient en fonction de la durée d'utilisation de la modalité. Des interventions précoces visant à réduire l'échec de la formation et à augmenter le soutien psychosocial pourraient aider à accroître l'adhésion au programme.
ABSTRACT
BACKGROUND: Most of the patients with end-stage kidney failure are treated with dialysis. Jurisdictions around the world are actively promoting peritoneal dialysis (PD) because it is equivalent to hemodialysis in terms of clinical outcomes, but is less costly. Unfortunately, PD penetration remains low. OBJECTIVES: The Starting dialysis on Time, At Home, on the Right Therapy (START) Project had 2 overarching goals: (1) to provide information that would help programs increase the safe and effective use of PD, and (2) to reduce inappropriate, early initiation of dialysis in patients with kidney failure. In this article, we focus on the first objective and describe the rationale for START and the methods employed. DESIGN: The START Project was a comprehensive, province-wide quality improvement intervention. SETTING: The START project was implemented in both Alberta Kidney Care (AKC)-South and AKC-North, including all 7 renal programs in the province. PATIENTS: The project included all patients who commenced maintenance dialysis between October 1, 2015, and March 31, 2018, in Alberta, Canada who met our inclusion criteria. MEASUREMENTS: We reported baseline characteristics of incident dialysis patients overall, and by site. Our key performance indicator was the proportion of patients who received PD for any period of time within 180 days of the first dialysis treatment. Reports also included detailed metrics pertaining to the 6 steps in the process of modality selection and we had the capacity to provide more granular data on an as-needed basis. To understand loss of PD patients, we reported the numbers of incident patients who recovered kidney function, experienced technique failure, received a transplant, were lost to follow-up, transferred to another program, or died. METHODS: START provided dialysis programs with a conceptual framework for understanding the drivers of PD utilization. High-quality, detailed data were collected using a tool that was custom-built for this purpose, and were mapped to steps in the process of care that drove the outcomes of interest. This allowed sites to identify gaps in care, develop action plans, and implement local interventions to address them. The process was supported by an Innovation Learning Collaborative consisting of 3 learning sessions that brought frontline staff together from across the province to share strategies and learnings. Ongoing data collection allowed teams to determine whether their interventions were effective at each subsequent learning session, and to revisit their interventions if required (the "Plan-Do-Study-Act Cycle"). RESULTS: Future work will report on the impact of the START project on incident PD utilization at a provincial and regional level. LIMITATIONS: The time required to design and implement interventions in practice, as well as the need for multiple PDSA (Plan-Do-Study-Act) cycles to see results, meant that the true potential may not be realized during a relatively short intervention period. Change required buy-in and support from local and provincial leadership and frontline staff. In the absence of accountability for local performance, we relied on the goodwill of participating programs to use the information and resources provided to effect change. Finally, the burden of documentation and data collection for frontline staff was high at baseline. We anticipated that adding supplemental data collection would be difficult. CONCLUSIONS: The START project was a comprehensive, province-wide initiative to maximize the safe and effective use of PD in Alberta, Canada. It standardized the management of incident dialysis patients, leveraged high-quality data to facilitate the reporting of metrics mapped to steps in the process of care that drove incident PD utilization, and helped programs to identify gaps in care and target them for improvement. Future work will report on the impact of the program on incident utilization at the provincial and regional level.
CONTEXTE: La majorité des patients atteints d'insuffisance rénale terminale (IRT) sont traités par dialyze. On s'efforce, partout dans le monde, de promouvoir la dialyze péritonéale (DP) parce qu'elle donne des résultats cliniques équivalents à ceux de l'hémodialyse, mais à moindres coûts. Malheureusement, l'adhésion à la DP demeure faible. OBJECTIFS: Le projet START (The Starting dialysis on Time, At Home, on the Right Therapy) avait deux objectifs principaux : (1) fournir de l'information qui aiderait les programs à accroître l'utilization sûre et efficace de la DP, et (2) réduire l'initiation précoce et inappropriée de la dialyze chez les patients atteints d'insuffisance rénale. Dans cet article, nous nous concentrons sur le premier objectif et nous décrivons la raison d'être de START et les méthodes employées. TYPE D'ÉTUDE: Le projet START était une intervention globale d'amélioration de la qualité à l'échelle provinciale. CADRE: Le projet START a été mis en Åuvre au sein de l'Alberta Kidney Care (AKC) South et de l'AKC-North, qui incluent les 7 programs rénaux de la province. SUJETS: Le projet a inclus tous les patients répondant aux critères d'inclusion qui avaient amorcé des traitements de dialyze d'entretien entre le 1er octobre 2015 et le 31 mars 2018 en Alberta (Canada). MESURES: Nous avons rapporté les caractéristiques de base des patients dialysés incidents de façon globale et par site. Notre principal indicateur de performance était la proportion de patients qui ont reçu la DP pendant une période quelconque au cours des 180 jours suivant le premier traitement de dialyze. Les rapports comprenaient également des mesures détaillées concernant les 6 étapes du processus de sélection de la modalité et nous étions en mesure de fournir des données plus précises au besoin. Pour mieux définir la perte de patients sur DP, nous avons rapporté le nombre de patients incidents ayant récupéré une fonction rénale, ayant vécu une défaillance technique, ayant reçu une greffe, ayant été perdus de vue, ayant été transférés à un autre program ou étant décédés. MÉTHODOLOGIE: START a fourni aux programs de dialyze un cadre conceptuel pour comprendre les facteurs d'utilization de la DP. Des données détaillées et de grande qualité ont été recueillies à l'aide d'un outil conçu spécifiquement à cette fin, et ont été mises en correspondance avec les étapes du processus de soins ayant conduit aux résultats d'intérêt. Ainsi, les sites ont pu déceler les lacunes dans les soins, élaborer des plans d'action et mettre en Åuvre des interventions locales pour combler ces lacunes. Le processus a été appuyé par une collaboration d'apprentissage innovante constituée de trois séances d'apprentissage qui ont réuni le personnel de première ligne de toute la province afin que ceux-ci partagent leurs stratégies et apprentissages. La collecte continue de données a permis aux équipes de déterminer si leurs interventions étaient efficaces et de revoir leurs interventions si nécessaire (le cycle PDSA: Plan-Do-Study-Act) lors de chaque séance d'apprentissage ultérieure. RÉSULTATS: Les travaux futurs feront état de l'impact du projet START sur l'utilization de la DP à l'échelle provinciale et régionale. LIMITES: Le véritable potentiel du projet pourrait ne pas se révéler lors d'une période d'intervention relativement courte en raison du temps requis pour concevoir les interventions et les mettre en Åuvre dans la pratique, et parce que le processus nécessite de procéder à plusieurs cycles PDSA avant de produire des résultats. Le changement exige l'adhésion et le soutien des directions locales et provinciales et du personnel de première ligne. En l'absence de responsabilisation à l'égard des réalisations locales, nous nous sommes appuyés sur la bonne volonté des programs participants à utiliser l'information et les ressources fournies pour faire le changement. Aussi, en début de processus, le fardeau de documenter et de collecter les données s'est avéré lourd pour le personnel de première ligne. Nous avions prévu qu'il serait difficile d'ajouter une collecte de données supplémentaire. CONCLUSION: Le projet START était une initiative globale à l'échelle provinciale qui visait à maximiser l'utilization sécuritaire et efficace de la DP en Alberta, au Canada. Le projet a normalisé la gestion des patients dialysés incidents, a exploité des données de haute qualité pour faciliter la déclaration des indicateurs correspondant aux étapes du processus de soins menant à l'utilization de la DP, et a aidé les programs à déceler les lacunes de soins et à les améliorer. Les travaux futurs feront état de l'impact du program sur l'utilization incidente au niveau régional et provincial.
ABSTRACT
BACKGROUND: People with end-stage kidney disease can either pursue conservative (palliative) management or kidney replacement therapy. Although transplant is preferred, there is a limited number of organs available rendering the majority of patients treated with some form of dialysis. Hemodialysis and peritoneal dialysis are equivalent regarding clinical outcomes, but peritoneal dialysis is much less costly to provide. Peritoneal dialysis is most often done in the home by the patient or a support person and carries a self-care burden on patients and families. Social support is important for patients receiving peritoneal dialysis and in sustaining peritoneal dialysis therapy. Few studies have comprehensively explored social support in the context of peritoneal dialysis. OBJECTIVE: To explore how patients, family members, and nurses view social support. DESIGN: Qualitative, descriptive study. SETTING: An outpatient peritoneal dialysis clinic in Western Canada. PARTICIPANTS: Patients, family members, and nurses. METHODS: Patients (n = 15), family members (n = 6), and nurses (n = 11) were interviewed between January and May 2018. Content analysis was undertaken using 4 attributes of social support (ie, emotional support, instrumental support, informational support, and appraisal support) as an analytic framework. RESULTS: Themes related to the 4 attributes of social support were identified: addressing emotional needs and managing emotion (emotional support); peritoneal dialysis tasks and life tasks (instrumental support); accessing information, receiving information, and learning (informational support); and affirmation/external reassurance and self-confidence (appraisal support). The social support needs of both patients and family members varied and were dependent on their existing support networks and individual perspectives of support. LIMITATIONS: It is possible that some of the study findings were gender-bound as well as context-specific. The study findings could be different if the patient and caregiver sample were more balanced based on sex. There are also unique attributes of each peritoneal dialysis program that may impact the transferability of these findings to other practice settings. CONCLUSION: Home-based peritoneal dialysis has potential benefit to patients and health care systems. However, receiving peritoneal dialysis requires support. If health care providers wish to promote this treatment, they must also understand how to best support patients and their family members. TRIAL REGISTRATION: Not applicable.
CONTEXTE: Les patients atteints d'insuffisance rénale terminale sont appelés à suivre un traitement conservateur (palliatif) ou une thérapie de remplacement rénal. Bien que la transplantation demeure préférable, le nombre d'organes disponibles contraint la majorité des patients à suivre des traitements de dialyse. Sur le plan des résultats cliniques, l'hémodialyse (HD) et la dialyse péritonéale (DP) sont équivalentes, mais cette dernière se révèle beaucoup moins coûteuse. La DP, souvent pratiquée à domicile par le patient ou une personne-aidante, impose toutefois un important fardeau au patient et à ses proches. Le soutien social est donc essentiel pour les patients traités par DP et pour soutenir cette thérapie essentielle. Peu d'études se sont penchées sur l'accompagnement des patients recevant des traitements de dialyse péritonéale. OBJECTIF: Connaître les perceptions des patients, de leurs proches et d'infirmières à l'égard du soutien social. TYPE D'ÉTUDE: Étude qualitative et descriptive. CADRE: Une clinique de dialyse péritonéale ambulatoire de l'Ouest canadien. PARTICIPANTS: Les patients, leurs proches et des infirmières. MÉTHODOLOGIE: Les patients (n = 15), leurs proches (n = 6) et des infirmières (n = 11) ont été questionnés entre janvier et mai 2018. Quatre types de soutien social (soutien affectif, instrumental ou informationnel et services d'évaluation) ont servi de cadre à l'analyse de contenu. RÉSULTATS: Des thèmes relatifs à chacun des types de soutien social ont été définis: réponse aux besoins émotionnels et gestion des émotions (soutien affectif); tâches liées à la vie quotidienne et à la dialyse péritonéale (soutien instrumental); accès à l'information, obtention de l'information et apprentissage (soutien informationnel); affirmation, réconfort et confiance en soi (services d'évaluation). Les besoins d'accompagnement des patients et de leurs proches étaient variables et dépendaient de leurs réseaux d'aide actuels et de leurs perspectives individuelles. LIMITES: Il est possible que certains résultats soient liés au sexe ou au contexte des patients. Les résultats pourraient différer avec un rapport hommes-femmes plus équilibré dans les échantillons de patients et de soignants. Aussi, chaque programme de DP présente des caractéristiques uniques pouvant avoir une incidence sur la transférabilité des résultats dans d'autres contextes de pratique. CONCLUSION: La dialyse péritonéale à domicile présente des avantages pour les patients et les systèmes de santé. La pratique de cette modalité requiert cependant du soutien. Si les fournisseurs de soins souhaitent promouvoir la DP auprès de leurs patients, ils devront également comprendre comment offrir le meilleur accompagnement possible aux prestataires et à leurs familles. ENREGISTREMENT DE L'ESSAI: Sans objet.