Resident foreign patients receive adequate dialysis but fewer preemptive transplantations: data from the Italian pediatric dialysis registry.

BACKGROUND: Sociocultural issues play a key role in children needing kidney replacement therapy (KRT). METHODS: Data of incident patients < 18 years treated with chronic dialysis or preemptive kidney transplantation (pTx) between 2007 and 2016 were retrospectively collected from the Italian Pediatric Dialysis Registry; KRT modality and outcome were compared between patients with at least one non-Italian parent ("resident foreign patients," RFPs) and those from native parents ("domestic patients," DPs) and between the quinquennium 2007-2011 (period 1) and 2012-2016 (period 2). RESULTS: We included 448 children (26.8% RFPs). The percentage of RFPs increased from 23 to 30.3% (p = 0.08) from periods 1 to 2. They were younger (6.7 vs. 9.4 years, p = 0.025) and less often treated with pTx (3.3 vs. 13.4%, p = 0.009) than DPs. The percentage of pTx increased from period 1 to 2 in RFPs only (8.4-18.6%, p = 0.006). Independent predictors of a lower probability of pTx were lower age, belonging to RFPs group, starting KRT in period 1 and focal segmental glomerulosclerosis or glomerulopathy as primary kidney disease. Peritoneal dialysis was the preferred dialysis modality in both groups. Age, primary kidney disease, and center size were independently associated with dialysis modality choice. Patient survival, waiting time to Tx, and dialysis modality survival were not different between the two groups. CONCLUSIONS: The proportion of patients receiving KRT born from immigrant families increased in recent years in Italy. They were younger and less often treated with pTx than domestic patients. In case of dialysis, the outcome was not different between the two groups. Graphical abstract.

Choice of dialysis modality: patients' experiences and quality of decision after shared decision-making.

BACKGROUND: Patients with kidney failure experience a complex decision on dialysis modality performed either at home or in hospital. The options have different levels of impact on their physical and psychological condition and social life. The purpose of this study was to evaluate the implementation of an intervention designed to achieve shared decision-making for dialysis choice. Specific objectives were: 1) to measure decision quality as indicated by patients' knowledge, readiness and achieved preferences; and 2) to determine if patients experienced shared decision-making. METHOD: A mixed methods descriptive study was conducted using both questionnaires and semi-structured interviews. Eligible participants were adults with kidney failure considering dialysis modality. The intervention, based on the Three-Talk model, consisted of a patient decision aid and decision coaching meetings provided by trained dialysis coordinators. The intervention was delivered to 349 patients as part of their clinical pathway of care. After the intervention, 148 participants completed the Shared Decision-Making Questionnaire and the Decision Quality Measurement, and 29 participants were interviewed. Concordance between knowledge, decision and preference was calculated to measure decision quality. Interview transcripts were analysed qualitatively. RESULTS: The participants obtained a mean score for shared decision-making of 86 out of 100. There was no significant difference between those choosing home- or hospital-based treatment (97 versus 83; p = 0.627). The participants obtained a knowledge score of 82% and a readiness score of 86%. Those choosing home-based treatment had higher knowledge score than those choosing hospital-based treatment (84% versus 75%; p = 0.006) but no significant difference on the readiness score (87% versus 84%; p = 0.908). Considering the chosen option and the knowledge score, 83% of the participants achieved a high-quality decision. No significant difference was found for decision quality between those choosing home- or hospital-based treatment (83% versus 83%; p = 0.935). Interview data informed the interpretation of these results. CONCLUSIONS: Although there was no control group, over 80% of participants exposed to the intervention and responded to the surveys experienced shared decision-making and reached a high-quality decision. Both participants who chose home- and hospital-based treatment experienced the intervention as shared decision-making and made a high-quality decision. Qualitative findings supported the quantitative results. TRIAL REGISTRATION: The full trial protocol is available at ClinicalTrials. Gov ( NCT03868800 ). The study has been registered retrospectively.

Patient Perspectives on the Choice of Dialysis Modality: Results From the Empowering Patients on Choices for Renal Replacement Therapy (EPOCH-RRT) Study.

BACKGROUND: Little is known about factors that are important to patients with advanced kidney disease and their perspectives at the time they choose a dialysis modality. EPOCH-RRT, a study supported in part by the Patient-Centered Outcomes Research Institute (PCORI), was designed to assist patients with this choice by identifying such factors and effectively provide relevant information. STUDY DESIGN: Cross-sectional study, designed and conducted in collaboration with a multistakeholder advisory panel that included patients, caregivers, and health care professionals. SETTING & PARTICIPANTS: 180 patients with advanced chronic kidney disease (CKD; estimated glomerular filtration rate < 25mL/min/1.73m2), either non-dialysis-dependent (NDD-CKD; n=65) or on dialysis therapy (hemodialysis [HD], n=77; or peritoneal dialysis, n=38), recruited across the United States through social media and in-person contacts. METHODOLOGY: Semistructured telephone interviews including open- and closed-ended questions. ANALYTICAL APPROACH: Mixed methods, integrating quantitative and qualitative approaches; themes identified through content analysis of interview transcripts by 2 independent coders. RESULTS: Themes most often reported as important were keeping as much independence as possible, quality and quantity of life, and flexibility in daily schedule. Other factors (eg, concern about the way they look) differed across patient subgroups based on age, sex, and NDD-CKD/dialysis modality. Among patients who had initiated dialysis therapy, almost half (47%) the HD patients believed that the decision to be treated by HD had largely not been their choice; this was only reported by 3% of peritoneal dialysis patients. LIMITATIONS: Recruitment through social media and willingness to participate in lengthy telephone interviews resulted in a select sample that may not be representative of the broader advanced CKD population; therefore, generalizability of findings cannot be determined. CONCLUSIONS: Incorporation of patient priorities in care improves health outcomes. Given the perceived limited role in the choice of dialysis treatment, our findings support the need for interventions to improve shared decision making on dialysis treatment options, targeting both patients and clinicians.

A Comparison of Patient-Reported Outcome Measures of Quality of Life By Dialysis Modality in the Treatment of Kidney Failure: A Systematic Review.

BACKGROUND: There is an increasing demand to incorporate patient-reported outcome measures (PROMs) such as quality of life (QOL) in decision-making when selecting a chronic dialysis modality. OBJECTIVE: To compare the change in QOL over time among similar patients on different dialysis modalities to provide unique and novel insights on the impact of dialysis modality on PROMs. DESIGN: Systematic reviews, randomized controlled trials, and nonrandomized controlled trials were examined via a comprehensive search strategy incorporating multiple bibliographic databases. SETTING: Data were extracted from relevant studies from January 1, 2000 to December 31, 2019 without limitations on country of study conduction. PATIENTS: Eligible studies included adults (≥18 years) with end-stage kidney disease of any cause who were prescribed dialysis treatment (either as lifetime treatment or bridge to transplant). MEASUREMENTS: The 5 comparisons were peritoneal dialysis (PD) vs in-center hemodialysis (ICHD), home hemodialysis (HHD) vs ICHD, HHD modalities compared with one another, HHD vs PD, and self-care ICHD vs traditional nurse-based ICHD. METHODS: Included studies compared adults on different dialysis modalities with repeat measures within individuals to determine changes in QOL between dialysis modalities (in-center or home dialysis). Methodological quality was assessed by the Scottish Intercollegiate Guidelines Network (SIGN 50) checklist. A narrative synthesis was conducted, synthesizing the direction and size of any observed effects across studies. RESULTS: Two randomized controlled trials and 9 prospective cohort studies involving a combined total of 3711 participants were included. Comparing PD and ICHD, 5 out of 9 studies found significant differences (P < .05) favoring PD in the change of multiple QOL domains, including "physical component score," "role of social component score," "cognitive status," "role limitation due to emotional function," "role limitation due to physical function," "bodily pain," "burden of kidney disease," "effects of kidney disease on daily life," "symptoms/problems," "sexual function," "finance," and "patient satisfaction." Conversely, 3 of these studies demonstrated statistically significant differences (P < .05) favoring ICHD in the domains of "role limitation due to physical function," "general health," "support from staff," "sleep quality," "social support," "health status," "social interaction," "body image," and "overall health." Comparing HHD and ICHD, significant differences (P < .05) favoring HHD for the QOL domains of "general health," "burden of kidney disease," and the visual analogue scale were reported. LIMITATIONS: Our study is constrained by the small sample sizes of included studies, as well as heterogeneity among both study populations and validated QOL scales, limiting inter-study comparison. CONCLUSIONS: We identified differences in specific QOL domains between dialysis modalities that may aid in patient decision-making based on individual priorities. TRIAL REGISTRATION: PROSPERO Registration Number: CRD42016046980. PRIMARY FUNDING SOURCE: The original research for this study was derived from the Canadian Agency for Drugs and Technologies in Health (CADTH) 2017 optimal use report, titled "Dialysis Modalities for the Treatment of End-Stage Kidney Disease: A Health Technology Assessment." The CADTH receives funding from Canada's federal, provincial, and territorial governments, with the exception of Quebec.

CONTEXTE: On observe une demande croissante pour intégrer des mesures des résultats déclarées par les patients (MRDP) comme la qualité de vie (QDV) dans la prise de décision quant à la modalité de dialyse. OBJECTIF: Comparer l'évolution de la QDV chez des patients de profils similaires, mais utilisant différentes modalités de dialyse, pour fournir un éclairage nouveau sur l'incidence de la modalité sur les MRDP. TYPE D'ÉTUDE: Des revues systématiques et des essais contrôlés avec ou sans répartition aléatoire ont été examinés dans le cadre d'une stratégie de recherche globale incorporant plusieurs bases de données bibliographiques. CONCEPTION: Les données ont été extraites des études pertinentes entre le 1er janvier 2000 et le 31 décembre 2019 sans limitation relativement à l'origine (pays) de l'étude. SUJETS: Les études admissibles portaient sur des adultes atteints d'insuffisance rénale terminale (toutes causes) auxquels un traitement de dialyse avait été prescrit, soit comme traitement à vie, soit en attendant une transplantation. MESURES: Ont été comparées 1) la dialyse péritonéale [DP] vs l'hémodialyse en centre [HDC]; 2) l'hémodialyse à domicile [HDD] vs l'HDC; 3) les modalités d'HDD les unes aux autres; 4) l'HDD vs la DP; et 5) l'HDC autogérée vs l'HDC traditionnelle sous supervision d'une infirmière. MÉTHODOLOGIE: Les études incluses comparaient des adultes sous différentes modalités de dialyse et comportaient des mesures répétées permettant d'observer des changements dans la QDV selon la modalité (en centre ou à domicile). La qualité méthodologique a été évaluée avec la grille d'évaluation du Scottish Intercollegiate Guidelines Network (SIGN 50). Une synthèse narrative a été réalisée pour résumer la direction et l'ampleur de tous les effets observés dans les différentes études. RÉSULTATS: Ont été inclus deux essais contrôlés à répartition aléatoire et neuf études de cohorte prospectives (3 711 patients au total). En comparant la DP à l'HDC, cinq des neufs études rapportaient des différences significatives (P<0,05) favorisant la DP dans plusieurs aspects de la QDV, notamment quant au « score de la composante physique ¼, au « rôle du score de la composante sociale ¼, à « l'état cognitif ¼, à la « limitation dans les activités quotidiennes en raison des aspects émotionnels ¼, à la « limitation dans les activités quotidiennes en raison des aspects physiques ¼, à la « douleur physique ¼, au « fardeau de la néphropathie ¼, aux « conséquences de la néphropathie sur la QDV ¼, aux « symptômes/problèmes ¼, à la « fonction sexuelle ¼, aux « conséquences financières ¼ et à la « satisfaction du patient ¼. En revanche, trois de ces études montraient des différences statistiquement significatives (P<0,05) favorisant l'HDC dans les aspects suivants: « limitation dans les activités quotidiennes en raison des aspects physiques ¼, « état de santé général ¼, « soutien du personnel soignant ¼, « qualité du sommeil ¼, « soutien social ¼, « état de santé ¼, « interactions sociales ¼, « image corporelle ¼ et « état de santé global ¼. En comparant l'HDD et l'HDC, des différences significatives (P<0,05) favorisant l'HDD ont été rapportées en ce qui concerne « l'état de santé général ¼, le « fardeau de la néphropathie ¼ et l'échelle visuelle analogique. LIMITES: L'étude est limitée par la faible taille des échantillons des études incluses, ainsi que par l'hétérogénéité des populations et des échelles validées pour la mesure de la QDV, ce qui restreint les comparaisons entre les études. CONCLUSION: Des différences significatives touchant certains aspects propres à la qualité de vie ont été observées entre les différentes modalités de dialyse. Ces observations pourraient orienter une prise de décision en fonction des priorités individuelles des patients.

Patient Perspectives on Renal Replacement Therapy Modality Choice: A Multicenter Questionnaire Study on Bioethical Dimensions.

Background:Peritoneal dialysis (PD) incidence and prevalence in Germany are low compared with hemodialysis (HD), an underachievement with multifactorial causes. Patient perspectives on renal replacement therapy (RRT) choice play a growing role in research. To date, and to the best of our knowledge, the importance of bioethical dimensions in the context of RRT choice has not been analyzed. The aim of this multicenter questionnaire study was to delineate differences in patient perspectives of PD vs HD in terms of bioethical dimensions, thus helping nephrologists target potential PD candidates more efficiently.Methods:A total of 121 stable outpatients from 2 tertiary care hospitals and 4 dialysis clinics were surveyed for bioethical dimensions ("autonomy," "beneficence," "non-maleficence," "justice," and "trust") with ranking and Likert scale items. Inclusion criteria were RRT > 3 months, age ≥ 18 years, and sufficient cognitive and language skills.Results:A surprisingly high percentage of patients felt excluded from the RRT choice process. Peritoneal dialysis patients were more critical of RRT. They used more versatile information sources on RRT, whereas HD patients were mainly informed by their nephrologist. Peritoneal dialysis patients felt more often dissatisfied with RRT than HD patients and had less trust in their co-patients. However, PD patients felt less autonomy impairment regarding body integrity, fluid balance, and dialysis in general.Conclusions:Our study demonstrates that PD patients showed more scrutiny of their situation as patients, especially their co-patients. Their treatment empowered them toward feeling more autonomous than HD patients. These new insights into patient perspectives on RRT choice might facilitate modality choice for nephrologists.

PATIENTS EXPERIENCES OF INVOLVEMENT IN CHOICE OF DIALYSIS MODE.

BACKGROUND: International guidelines recommend that patients choose dialysis mode based on their own values and preferences; thus, involvement is needed in dialysis choice. A literature review indicated a lack of knowledge concerning patient involvement in decision-making, especially concerning patients' experiences of the decision-making process just after making the decision and before starting dialysis. OBJECTIVES: To gather information about how patients experienced involvement in the decision-making process of renal substation therapy just after they have made the decision and before starting dialysis. METHODS: A qualitative method with a phenomenological and hermeneutic approach. The study was based on individual semi-structured interviews with nine adult patients with chronic kidney disease. A data-driven analysis based on systematic text condensation was used. FINDINGS: Patients are a significant part of the decision. Health care professionals contribute to the experience of being involved. Patients keep putting off the final choice. CONCLUSION: The patients found themselves involved in the choice of dialysis mode and have different views on what is needed to feel being involved. Information, interaction, and advice from health care professionals affect this experience. However, the experience of not having any symptoms caused patients to put off the final choice of dialysis mode.