Tolvaptan in ADPKD: a turning point or an unsustainable therapy? One year of “real life” experience

Abstract

Autosomal dominant polycystic kidney disease (ADPKD) is the most frequent monogenic kidney disease, alone responsible for over 10% of patients with end-stage renal disease, and with an important impact on public health. Tolvaptan (TOLV) has recently been approved in many European countries for its ability to slow disease progression in patients that are eligible for treatment. Nevertheless, the doctor’s choice to prescribe the drug and the patient’s compliance are strongly influenced by the aquaretic effect complications. In a cohort of patients pertaining to the Nephrology clinic of the AOU Federico II of Naples and  treated with TOLV, we assessed  not only the adherence to the treatment and the safety of the drug, but also the real feasibility of this therapy through specific questionnaires on sleep quality, abdominal-renal pain, quality of life and patients’ general satisfaction. Within the limits of preliminary data and on the basis of the responses of our population, followed for a period  of at least one year and administered the maximum titration dosage, it can be asserted that the doubts regarding the real compliance of the patients can be overcome.

 

Keywords: ADPKD, Tolvaptan, “real life” experience, quality of life

Sorry, this entry is only available in Italian. For the sake of viewer convenience, the content is shown below in the alternative language. You may click the link to switch the active language.

Introduzione

La malattia policistica autosomica dominante (ADPKD) è la più frequente malattia renale monogenica, con circa 12,5 milioni di persone affette nel mondo, ed è responsabile di oltre il 10% dei pazienti allo stadio di malattia renale terminale (ESRD) con un importante peso sulla sanità pubblica [1].

In Italia si stima un numero compreso tra 24.000 e 34.000 soggetti affetti.

Per una patologia che è stata a lungo negletta per mancanza di opzioni terapeutiche specifiche è ora disponibile un’attraente possibilità di trattamento, il Tolvaptan (TOLV). In due trial clinici (Tempo 3:4, Reprise), TOLV ha dimostrato efficacia clinica nel rallentare la progressione della malattia in pazienti ADPKD con insufficienza renale (IRC) precoce e avanzata [15]. Sulla base di tali evidenze TOLV è stato recentemente approvato in molti paesi Europei [5].

Tuttavia, una serie di argomenti contro il TOLV ancora impatta sulla decisione clinica di trattare i pazienti. Tali argomenti includono: effetto sulla qualità di vita dei pazienti dovuto all’importante attività acquaretica, possibile epatotossicità, variabile effetto sulla progressione della funzione renale, difficoltà a completare l’uptitration e a mantenere l’aderenza al trattamento.

La scelta del paziente di cominciare il trattamento rimane ancora oggi fortemente influenzata soprattutto dall’effetto acquaretico caratteristico della terapia.

 

La visualizzazione dell’intero documento è riservata a Soci attivi, devi essere registrato e aver eseguito la Login con utente e password.

Clinical and social advantages of remote patient monitoring in home dialysis

Abstract

Introduction. Home dialysis (both extracorporeal and peritoneal) can improve the management and the quality of life of patients with chronic disease. In this study we evaluated the possible clinical and social advantages derived from remote patient monitoring using the Doctor Plus® Nephro program, as opposed to the standard of care. Methods. We included in our analysis the patients participating in the remote monitoring program of the Nephrology Center of ASL 3 in Rome from July 2017 to April 2019. Each patient was observed from a minimum of 4 months to a maximum of 22 months. Systolic and diastolic pressure, heart rate, weight and oximetry were monitored. An SF-12 questionnaire was also administered to evaluate the level of satisfaction with the program Doctor Plus® Nephro. Results. 16 patients (56,3% males, mean age 62 years) were observed as part of the analysis. During the program there was a reduction of systolic pressure in 69% of the patients and of diastolic pressure in 62,5%. Mean heart rate decreased from 69,4 bpm to 68,8 bpm (p<0,0046). The answers to the SF-12 questionnaire showed that the perceived health status of all patients had improved. Due to the closer clinical monitoring, the number of patients accessing emergency services also decreased. Conclusion. Doctor Plus® Nephro could improve access to home treatment; the results of this study in fact show it to be a useful tool for Nephrological Centers to monitor patients undergoing home dialysis.

 Keywords: remote patient monitoring, dialysis, home dialysis, blood pressure, quality of life

Sorry, this entry is only available in Italian. For the sake of viewer convenience, the content is shown below in the alternative language. You may click the link to switch the active language.

Introduzione

Puntare sulle cure domiciliari per migliorare la gestione e la qualità della vita del paziente cronico e della sua famiglia è l’indicazione contenuta nell’ultimo Piano Nazionale della Cronicità (PNC) approvato dal Ministero della Salute Italiano, che dedica una particolare attenzione alla malattia renale cronica e all’insufficienza renale. Nel capitolo del PNC dedicato alle malattie croniche e all’insufficienza renale uno degli obiettivi generali è favorire l’assistenza domiciliare del paziente; una delle linee di intervento proposte a supporto è sperimentare modelli di dialisi domiciliare (dialisi peritoneale e emodialisi domiciliare), utilizzando strumenti di tele-dialisi assistita [1].

La dialisi domiciliare offre numerosi vantaggi se comparata con la dialisi effettuata in ospedale. Gli studi dimostrano diversi benefici per i pazienti in dialisi domiciliare in termini di sopravvivenza, qualità di vita, costi di spostamento, autonomia e benefici clinici, quali aumento del controllo dei valori pressori e del fosforo [28]. Inoltre, nella maggior parte dei paesi, il costo della dialisi domiciliare è inferiore al costo della dialisi effettuata in ospedale [911].

 

La visualizzazione dell’intero documento è riservata a Soci attivi, devi essere registrato e aver eseguito la Login con utente e password.

Psychological Assessment of a sample of women with ADPKD: quality of life, body image, anxiety and depression

Abstract

Introduction: The Autosomal Dominant Polycystic Kidney Disease (ADPKD) is a chronic renal disease that has not yet been the subject of psychological research. There are only a few studies related to the consequences and complications of this pathology on female patients, although women affected by this disease present serious problems.

Aim: The purpose of this study is to perform a psychological assessment (quality of life, anxiety, depression, body image) on a sample of 37 women with ADPKD.

Materials and Methods: The assessment is based on ad hoc social and personal record, KDQOL-SF (to evaluate health-related quality of life), HADS (for anxiety and depression) and BUT (for perceived body image). This assessment is administrated in a specific outpatient clinic.

Results: Results show that kidney disease has a negative impact on health-related quality of life. Concerns about body image are linked to anxious and depressive symptomatology: an increase in these concerns is related to a worsening of anxiety and depressive symptoms in patients. Moreover, a higher psychological malaise emerges in hypertensive ADPKD patients, in terms of mood and quality of life, compared to those without this concomitant pathology. Finally, it is important to note that social support, real or perceived, is of paramount importance in maintaining psychological well-being.

Conclusions: The psychological evaluation of ADPKD patients can be used in clinical practice as a supplemental model in multidisciplinary Nephrology team.

 

Keywords: Quality of life, ADPKD, body image, psychological assessment, hypertension.

Sorry, this entry is only available in Italian. For the sake of viewer convenience, the content is shown below in the alternative language. You may click the link to switch the active language.

Introduzione

Nel corso degli ultimi anni, la collaborazione dello Psicologo Clinico con le Unità Operative di Nefrologia e Dialisi si è consolidata tanto da promuovere lo sviluppo della Psiconefrologia [1]. Tale disciplina ha l’obiettivo di identificare precocemente la presenza di situazioni di disagio psicologico legate alle patologie renali croniche e di agire su quest’ultime, con interventi di supporto psicologico il più possibile specializzati. 

La visualizzazione dell’intero documento è riservata a Soci attivi, devi essere registrato e aver eseguito la Login con utente e password.

Home Hemodialysis: Experience and Preliminary Results Of The First Center In Campania

Abstract

The Home Hemodialysis (HHD) is an uncommon dialytic option that can offer better clinical outcomes and a more satisfactory quality of life. The Health Plan of the Region Campania 2011-2013 states that” the system of home care for regional planning is particularly important”.

From August 2014 to March 2015 two patients, on standard dialysis (HD) as inpatients at Dialysis Centre of the University “Federico II” of Naples, started Short Daily Home Hemodialysis (SDHD) (4-6 dialysis treatments/week, 2.5 hours per session) using the portable cycler NxStage System One).

The data collected showed that the clinical benefits described in the literature were confirmed in patients enrolled in this HHD program. Shorter and more frequent hemodialysis sessions allowed a significant reduction in interdialytic weight gain and greater intradialytic hemodynamic stability. A significant reduction in blood pressure and anti-hypertensive drugs were obtained. The control of phosphorus appeared better and hemoglobin was to target with a lower dose of weekly erythropoetin. The patients reported a greater well-being and a reduction in post-dialytic asthenia. No problem has been reported in using the vascular access (CVC and FAV) by the patient/caregiver. The dialysis adequacy and efficiency were comparable between SDHD and HD. The experience with the HHD is encouraging as the patients achieved an adequate dialysis dose without any complications reporting an improving sense of well-being and a better quality of life.

Key Words: Home Hemodialysis, Short Daily Home Hemodialysis, Dialysis Adequacy, Quality of Life.

Sorry, this entry is only available in Italian. For the sake of viewer convenience, the content is shown below in the alternative language. You may click the link to switch the active language.

L’Emodialisi Extracorporea Domiciliare (HHD) è un’alternativa non ancora ben conosciuta nel panorama dei trattamenti sostitutivi dell’insufficienza renale cronica. Questo tipo di modalità dialitica, già utilizzata in altri Paesi e in alcune Regioni Italiane, può offrire significativi vantaggi in termini di outcomes clinici, socio-economici e soprattutto di qualità della vita del paziente. 

La visualizzazione dell’intero documento è riservata a Soci attivi, devi essere registrato e aver eseguito la Login con utente e password.