Choosing to live with home dialysis-patients' experiences and potential for telemedicine support: a qualitative study

<p>Abstract</p> <p>Background</p> <p>This study examines the patients' need for information and guidance in the selection of dialysis modality, and in establishing and practicing home dialysis. The study focuses on patients' experiences living with home dialysis, how they master the treatment, and their views on how to optimize communication with health services and the potential of telemedicine.</p> <p>Methods</p> <p>We used an inductive research strategy and conducted semi-structured interviews with eleven patients established in home dialysis. Our focus was the patients' experiences with home dialysis, and our theoretical reference was patients' empowerment through telemedicine solutions. Three informants had home haemodialysis (HHD); eight had peritoneal dialysis (PD), of which three had automated peritoneal dialysis (APD); and five had continuous ambulatory peritoneal dialysis (CAPD). The material comprises all PD-patients in the catchment area capable of being interviewed, and all known HHD-users in Norway at that time.</p> <p>Results</p> <p>All of the interviewees were satisfied with their choice of home dialysis, and many experienced a normalization of daily life, less dominated by disease. They exhibited considerable self-management skills and did not perceive themselves as ill, but still required very close contact with the hospital staff for communication and follow-up. When choosing a dialysis modality, other patients' experiences were often more influential than advice from specialists. Information concerning the possibility of having HHD, including knowledge of how to access it, was not easily available. Especially those with dialysis machines, both APD and HHD, saw a potential for telemedicine solutions.</p> <p>Conclusions</p> <p>As home dialysis may contribute to a normalization of life less dominated by disease, the treatment should be organized so that the potential for home dialysis can be fully exploited. Pre-dialysis information should be unbiased and include access to other patients' experiences. Telemedicine may potentially facilitate a communication-based follow-up and improve safety within the home setting, making it easier to choose and live with home dialysis.</p

Peritoneal small solute clearance is nonlinearly related to patient survival in the Australian and New Zealand peritoneal dialysis patient populations

Background: The contribution of peritoneal small solute clearance per se to peritoneal dialysis (PD) patient outcomes remains uncertain. The aim of the present study was to determine whether baseline peritoneal small solute clearance predicted subsequent survival in Australian and New Zealand PD patients. Methods: The study included all adult patients in Australia and New Zealand that commenced PD between 1 April 2002 and 31 December 2005 and had a peritoneal Kt/V (pKt/V) measurement performed within 6 months of PD commencement. Time to death and death-censored technique failure were examined by Kaplan-Meier analyses and both univariate and multivariate Cox proportional hazards models. Results: pKt/V measurements were available in 2434 (63%) of the 3841 individuals that began PD treatment in Australia and New Zealand during the study period. These patients were divided into 4 groups according to their baseline pKt/V values: 2.00 (n = 678). Compared with the reference group (pKt/V 1.70 - 2.00), patient mortality was significantly increased in individuals with pKt/V 2.00) also tended to be associated with higher mortality (adjusted HR 1.42, 95% CI 0.96 - 2.11; p = 0.079). The other independent predictors of death were lower residual renal function (RRF), older age, peripheral vascular disease, diabetes mellitus, late referral, higher peritoneal permeability, and untreated hypertension. No interaction was observed between pKt/V, RRF, and survival. Death-censored technique failure was demonstrated to be significantly worse in the pKt/V 1.45 - 1.69 group (adjusted HR 1.36, 95% CI 1.03 - 1.79; p = 0.028), older individuals, and individuals with Asian racial origin. Conclusions: Initial peritoneal Kt/V significantly and independently influences patient survival in Australian and New Zealand PD patients. Overall survival appears to be optimal in the pKt/V range 1.70 - 2.00, with poorer outcomes observed above and below these values. In particular, survival is significantly worse when the achieved pKt/V i

A person-centered integrated care quality framework, based on a qualitative study of patients' evaluation of care in light of chronic care ideals

Background: Person-Centered Integrated Care (PC-IC) is believed to improve outcomes and experience for persons with multiple long-term and complex conditions. No broad consensus exists regarding how to capture the patient-experienced quality of PC-IC. Most PC-IC evaluation tools focus on care events or care in general. Building on others’ and our previous work, we outlined a 4-stage goal-oriented PC-IC process ideal: 1) Personalized goal setting 2) Care planning aligned with goals 3) Care delivery according to plan, and 4) Evaluation of goal attainment. We aimed to explore, apply, refine and operationalize this quality of care framework. Methods: This paper is a qualitative evaluative review of the individual Patient Pathways (iPP) experiences of 19 strategically chosen persons with multimorbidity in light of ideals for chronic care. The iPP includes all care events, addressing the persons collected health issues, organized by time. We constructed iPPs based on the electronic health record (from general practice, nursing services, and hospital) with patient follow-up interviews. The application of the framework and its refinement were parallel processes. Both were based on analysis of salient themes in the empirical material in light of the PC-IC process ideal and progressively more informed applications of themes and questions. Results: The informants consistently reviewed care quality by how care supported/ threatened their long-term goals. Personal goals were either implicit or identified by “What matters to you?” Informants expected care to address their long-term goals and placed responsibility for care quality and delivery at the system level. The PC-IC process framework exposed system failure in identifying long-term goals, provision of shared long-term multimorbidity care plans, monitoring of care delivery and goal evaluation. The PC-IC framework includes descriptions of ideal care, key questions and literature references for each stage of the PC-IC process. This first version of a PC-IC process framework needs further validation in other settings. Conclusion: Gaps in care that are invisible with event-based quality of care frameworks become apparent when evaluated by a long-term goal-driven PC-IC process framework. The framework appears meaningful to persons with multimorbidity.<p

Baseline and time-averaged fluid removal affect technique survival in peritoneal dialysis in a non-linear fashion

Aim: The longevity of peritoneal dialysis (PD) is limited by technique failure and patient mortality. The authors assessed the influence of baseline and time-averaged fluid removal on patient, technique and death-censored technique survival

Additional file 1: of A person-centered integrated care quality framework, based on a qualitative study of patients’ evaluation of care in light of chronic care ideals

Interview guide. (DOCX 15 kb

Person-centred, integrated and pro-active care for multi-morbid elderly with advanced care needs: A propensity score-matched controlled trial

Background - Person-centred care (PCC) focusing on personalised goals and care plans derived from “What matters to you?” has an impact on single disease outcomes, but studies on multi-morbid elderly are lacking. Furthermore, the combination of PCC, Integrated Care (IC) and Pro-active care are widely recognised as desirable for multi-morbid elderly, yet previous studies focus on single components only, leaving synergies unexplored. The effect of a synergistic intervention, which implements 1) Person-centred goal-oriented care driven by “What matters to you?” with 2) IC and 3) pro-active care is unknown. Methods - Inspired by theoretical foundations, complexity science, previous health service research and a patient-driven evaluation of care quality, we designed the Patient-Centred Team (PACT) intervention across primary and secondary care. The PACT team collaborate with the patient to make and deliver a person-centred, integrated and proactive multi-morbidity care-plan. The control group receives conventional care. The study design is a pragmatic six months prospective, controlled clinical trial based on hospital electronic health record data of 439 multi-morbid frail elderly at risk for emergency (re) admissions referred to PACT and 779 propensity score matched controls in Norway, 2014–2016. Outcomes are emergency admissions, the sum of emergency inpatient bed days, 30-day readmissions, planned and emergency outpatient visits and mortality at three and six months follow-up. Results - The Rate Ratios (RR) for emergency admissions was 0,9 (95%CI: 0,82-0,99), for sum of emergency bed days 0,68 (95%CI:0,52-0,79) and for 30-days emergency readmissions 0,72 (95%CI: 0,41-1,24). RRs were 2,3 (95%CI: 2,02-2,55) and 0,9 (95%CI: 0,68-1,20) for planned and emergency outpatient visits respectively. The RR for death at 3 months was 0,39 (95% CI: 0,22-0,70) and 0,57 (95% CI: 0,34-0,94) at 6 months. Conclusion - Compared with propensity score matched controls, the care process of frail multi-morbid elderly who received the PACT intervention had a reduced risk of high-level emergency care, increased use of low-level planned care, and substantially reduced mortality risk. Further study of process differences between groups is warranted to understand the genesis of these results better

Statusbericht aus Norwegen: Implementierung von Patientenbeteiligung im norwegischen Gesundheitswesen

Norway has traditionally high standards regarding civil rights particularly emphasizing equal access to societal resources including health care. This background and the health care system’s centralized national organization make it perfectly suited for implementation of shared decision making (SDM). In recent years, great efforts have been made by policy- makers, regional health authorities and not least the patients to facilitate a process of change in health communication culture. SDM is currently even given highest priority in health care strategies on all system levels. SDM has been structurally implemented, e.g. by including corresponding guidance in the standard patient pathways. Moreover, SDM is established as an element of service on the national health portal hosting a constantly increasing number of decision aids. Essentially the Norwegian Knowledge Center for Health Services contributes by searching and providing information for use in decision aids. Implementation is now being rolled out unit by unit for a list of medical problems as a series production of SDM using decision aids and health professional training. Importantly, production of SDM begins and succeeds as a soundly structured communication with both clinical environments and patients. However, as communication training has not been implemented before now, there are no data demonstrating sufficient realization of SDM in current health care. Beyond making reasonable use of scientific achievements, the Norwegian movement’s secret of success is the simultaneous commitment of all actors of the health system to a common idea