Is this a myth or true? Why does this happen and what can be done about it?
What is the average length of time that PD patients and HHD patients continue to dialyze at home?
I am not aware of any national data on the average length of time that someone remains on peritoneal dialysis or home hemodialysis. Averages can be affected by many factors and an average doesn’t accurately reflect what any patient’s chances are for staying on PD for a long time. Some people who do PD for a short time have a change in their health status that prevents them from doing PD or PD may not work well for them either because of clinical or psychosocial factors. Sometimes patients come in-center because they burn out on the therapy (CAPD burnout is higher than CCPD) or because clinics lose their home training nurse and patients don’t get the support they need to stay at home during a transition. On the other hand, some patients have been on PD for decades.
As compared to the how the rest of the world treats kidney failure, home dialysis and especially PD is vastly underutilized. One major reason for this is that many patients starting treatment report they had no education about treatment options prior to starting dialysis and were not told about home dialysis options – either PD or home HD. Another reason is that many doctors have limited experience with patients on home dialysis and they recommend what they’re comfortable with. However, even surveys of doctors report that they believe that home dialysis is underutilized in the U.S.
According to the United States Renal Data System’s most recent annual data report, only 6.7% of new dialysis patients were on PD and of all patients (new and existing) on dialysis about 8% are on PD. The report states that of those changing treatments, it is most likely to be shifts from PD to HD and the change is most likely to occur in the second or third year of treatment. It doesn’t speculate why. You might want to know that according to the USRDS, the probability of death in the first 5 years of treatment is lower for patients starting on PD than those starting on HD.
The most common reason for PD failure relates to problems with dialysis adequacy. Repeated episodes of peritonitis and over-use of 4.25% dextrose dialysate can damage the peritoneum which must be working well to assure adequate (or optimal) dialysis. Patients have some control over peritonitis and what solutions they use for dialysis. Patients can learn to avoid peritonitis by following the sterile technique the nurse teaches them. Patients should understand that they can be damaging their peritoneum by using high sugar concentrations. If they stick to their fluid restriction and control their fluid weight gains this will increase the chances that their peritoneum will continue to function like it should for years to come.
Here’s an article from 2001 that describes some of the issues with PD vs HD that could be shared with patients:
http://www.ikidney.com/iKidney/InfoCenter/NephrologyIncite/Archive/IsPeritonealDialysisBetterThanHemodialysis.htm
Here are a couple of studies that might interest you. The first is a study that discusses how long people stay on PD in the U.S. and the second discusses the same thing for home hemodiaysis but just on one center’s experience. There is no national data reporting on home hemodialysis because you can’t show whether differences are statistically significant as long as numbers of patients on this modality are low.
Kidney Int Suppl. 2003 Dec;(88):S3-12.
Patient and technique survival on peritoneal dialysis in the United States:
evaluation in large incident cohorts.
Guo A, Mujais S.
Renal Division, Baxter Healthcare Corporation, McGaw Park, IL, USA.
Patient and technique survival on peritoneal dialysis in the United States:
Evaluation in large incident cohorts. Secular trends in dialysis require a
frequent re-examination of outcomes in patients on renal replacement modalities. We examined three large cohorts of patients initiating peritoneal dialysis (PD) in 1999, 2000, and 2001 (total of > 30,000 patients) to ascertain trends in patient outcomes, technique success, and predictors of both parameters of interest. Trends toward improved patient survival, higher technique success, and increasing use of cycler-based therapy, with more recent calendar years were noted. Age and diabetes were clear predictors of patient survival, but did not appear to influence technique success. Technique success was higher in patients on automated PD (APD) than in patients on continuous ambulatory PD (CAPD), but this difference was mostly concentrated in the first year on therapy. Patients starting PD after a failed allograft had excellent survival. We conclude that the current state of PD in the United States is characterized by improving patient outcomes, higher technique success, and a predominance of use of cycler-based therapy. Several opportunities for improving technique success amenable to practice interventions have been identified. The high success of PD in patients with failed allograft suggests that it is beneficial to utilize this modality more frequently in this patient group than current practice.
And here’s one center’s report of patient longevity on home hemodialysis:
Adv Ren Replace Ther. 1996 Apr;3(2):106-11.
Home hemodialysis offers excellent survival.
Delano BG.
Department of Medicine, SUNY-Health Science Center at Brooklyn, NY 11203, USA.
In selected patients, home hemodialysis offers excellent patient survival and opportunities for rehabilitation. In this article I review some survival and rehabilitation data from the literature. I then report on our experience with training 204 patients in the inner city since 1969. Cumulative technique survival is 17% at 28 years. In addition, I report the outcome of 13 patients, "long survivors, " who have been maintained on home hemodialysis for 20 or more years.
Thank you for your comprehensive response. It is very helpful to have an expert to clarify some of these issues. Two more questions:
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I have also heard that caregiver burnout is a factor in moving patients from home to in-center. Myth or fact? Have you heard of any programs that specifically address this?
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Does MEI offer any programs to educate physicians about the benefits of home therapies? Are they available online?
thank you!
Caregiver burnout can be a problem with patients that are on dialysis in general whether the patient does dialysis in a clinic or at home. It’s not easy for a caregiver to live with someone who has a chronic illness, has a special diet, may be depressed or anxious or angry about the limitations dialysis may place on them. As professionals we don’t spend enough time asking caregivers how they’re doing, listening to their concerns, and offering them the support they need to rejuvenate themselves. We just expect them to keep on keeping on and sometimes what we ask of them is not fair.
For home hemodialysis, the responsibilities of the caregiver are higher than for loved ones of most adult PD patients. Home hemo clinics require a caregiver to be trained for as much as 6-8 weeks and most require someone to be present during the entire treatment (although some allow patients to do home hemodialysis alone). Some HD and PD patients are not trained to do their treatment independently either because they can’t or won’t or because the caregiver asks to take on more responsibility–sometimes more than they should for their own well-being.
With PD, most adults and older children can be taught to do most or all of their dialysis. The more the patient does, the less burden there is on caregivers. Parents, adult children, family, friends, and paid helpers for years have committed to helping their loved ones (or clients) survive by helping them to do their home treatments. With any kind of home therapy, it’s best if there is an way for the caregiver to have a break from doing dialysis. This often means teaching more than one person to do the home treatment so the primary caregiver has someone to fill in if he/she is sick or needs (or wants) to be away.
Stress and poor quality of life are factors in burnout–for patients and for caregivers. However, there are few studies on caregiver coping and quality of life…most study patients’ coping and quality of life instead. I think this indicates how little attention we pay to the needs of these essential partners who help us achieve optimal clinical, functional, emotional outcomes for our patients. We should and can do more for them.
Here’s an abstract of a Swedish study on caregivers’ coping:
J Adv Nurs. 2000 Jun;31(6):1398-408.
Coping strategies and health-related quality of life among spouses of continuous ambulatory peritoneal dialysis, haemodialysis, and transplant patients.
Lindqvist R, Carlsson M, Sjoden PO.
Senior Lecturer, Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden. Ragny.Lindqvist@hig.se
In the study reported here 55 spouses of patients living with end-stage renal disease (ESRD) were investigated with respect to coping strategies and health-related quality of life. Findings from the study were compared to two random samples of the Swedish general population (n = 454, and n = 1200). The study design was correlational and comparative. Coping was measured by the Jalowiec Coping Scale, and quality of life (QoL) by the Swedish Health-Related Quality of Life Survey (SWED-QUAL). Data were analysed using a number of statistical tests including Pearson’s product moment correlations, Student’s t-test and two way ANOVAs. The combined sample of spouses used significantly more optimistic and palliative coping than the general population, but less confrontative, self-reliant, evasive and emotive coping. In the study fatalistic, evasive and emotive coping was associated with low perceived efficiency in handling various aspects of the partners’ situation. The male spouses used significantly less optimistic, supportive and palliative coping than did the female spouses. The spouses of transplant patients had better overall quality of life than the continuous ambulatory peritoneal dialysis and haemodialysis spouse groups, most likely due to the lower age of the former group. The study findings suggest that emotive, evasive and fatalistic coping are less than optimal ways to deal with problems occasioned by the partner’s treatment.
Here’s another abstract from the U.S.:
ANNA J. 1994 Aug;21(5):237-46, 257; discussion 247.
Quality of life for spouses of CAPD patients.
Dunn SA, Lewis SL, Bonner PN, Meize-Grochowski R.
The overall purpose of this study was to describe the quality of life (QoL) for spouses of continuous ambulatory peritoneal dialysis (CAPD) patients and to determine what factors are the best predictors of the spouses’ perceived QoL. Thirty-eight spouses of CAPD patients from 2 dialysis units completed a demographic data form, the Jalowiec Coping Scale, the Dyadic Adjustment Scale, and the Quality of Life Index. The primary CAPD nurses completed the End Stage Renal Disease Severity Index on the ill partner. The results showed that 21% of the spouses perceived their QoL as high, 55% perceived their QoL as moderate, and 24% perceived their QoL as fair to poor. The results indicated that the QoL
for the spouse is similar to that of CAPD patients with the exception of the
family domain. On the family domain, the spouses scored significantly lower. Marital adjustment was the best predictor of QoL for the spouse. Income was the next best predictor. These two variables combined for a predictive value of 85%. Understanding the effect that a chronic illness has on the spouse will assist nurses in providing quality care for both the patient and the spouse.