- Email: [email protected]
Patients' Perspectives of Factors Affecting Modality Selection: A National Kidney Foundation Patient Survey
Patients' Perspectives of Factors Affecting Modality Selection: A National Kidney Foundation Patient Survey Karren King The National Kidney Foundation undertook a survey of individuals with chronic renal failure to assess factors that may have influenced their treatment selection. Areas examined included demographic data, patient education, movement between modalities, patient satisfaction with treatment, and sense of well-being. The results point to a need for additional patient education and assurance that every ESRD patient is informed about all treatment options that are not medically contraindicated. There is an additional need for enhanced treatment decision making that involves both the patient and the nephrologist. Respondents were highly satisfied with their current treatment modality although 17% had previously changed treatment owing to personal dissatisfaction. Center hemodialysis patients identified staff performance of treatment and dialyzing only 3 times weekly as the main advantages of that modality. Those on peritoneal dialysis identified its flexibility that allows control over one's personal schedule as important. Transplant recipients stressed the importance of living a more normal life than that afforded by dialysis. Most respondents expressed a positive sense of well-being. While transplant patients expressed a higher sense of well-being than individuals on dialysis, it is important to note that approximately 70% of those on dialysis reported a positive sense of well-being. © 2000 by the National Kidney Foundation, Inc. Index Words: Modality/treatment selection; patient education; patient satisfaction; sense of wellbeing; patient employment.
I
ndividuals are unique, and as such, their rationale for selecting a specific treatment modality will vary dependent on their specific circumstances. Realizing this, yet desiring to quantify the multitude of factors that may influence such a decision, the National Kidney Foundation (NKF) designed a survey to gather this information and subsequently provide data that will guide the renal community in its work with those with chronic renal failure.
Objectives and Methodology The objectives of the study were four-fold: • to identify patient demographic differences by treatment modality; • to assess the impact of patient education on how treatment decisions are made; • to gather information about patient movement between treatment modalities; and • to examine patient satisfaction with treatment and sense of well-being.
pretable and used in the final data analysis. Not all 844 individuals responded to each question, and in these cases the total number of respondents on each item was used to calculate the percentages. It is also important to note that these respondents may not be representative of the entire ESRD population in the United States but rather reflect those with enough motivation and interest to both initiate contact with the NKF to request receipt of the newsletter and to return the survey. Thus, the data should be viewed as a selfreport of only those 844 individuals who participated.
Survey Results Participant Demographics Most respondents were ages 46 to 65 (37.8%), followed by those ages 26 to 45 (32.3%). The
From The National Kidney Foundation, Inc, Kansas City,
In 1995 the NKF distributed a patient selfreport survey to 5,000 persons with end-stage renal disease (ESRD) who were home subscribers to the NKF patient newsletter, Family Focus, to collect the necessary data. Eight hundred forty-four of the returned surveys were inter-
MOo Address correspondence to Karren King, MSW, ACSW, LCSW, National Kidney Foundation , Inc, 825 West Meyer Blvd, Kansas City, MO 64113; e-mail: [email protected]. © 2000 by the National Kidney Foundation , Inc. 1073-4449/00/0703-0009$3.00/0 doi:10.1 053/jarr.2000.8123
Advances in Renal Replacement Therapy, Vol 7, No 3 (July), 2000: pp 261-268
261
262
Karren King
majority of the respondents were white (62.7%), with 22.6% black, and the remainder identifying themselves with other ethnic groups. The participants were fairly highly educated, as 82.8% had a minimum of a high school education, with 27.4% of those graduated from college. Diabetes mellitus (DM) and hypertension (HTN) were identified as the two main causes of ESRD, at 20.0% and 23.1%, respectively. There are similarities between these findings and those from the United States Renal Data System (USRDS) 1999 Annual Data Report. This report shows that 38.8% of those on chronic dialysis or with a kidney transplant as of December 1997 were in the age range of 45 to 64, 61.3% were white, and 24.0% identified HTN as the cause of ESRD. The NKF sample, however, had fewer blacks and fewer individuals who attributed ESRD to DM than those reported in the USRDS data.! Patient Employment Data The NKF Family Focus survey examined employment data for those patients ages 18 to 55, typically deemed to be of prime working age. Only 36.7% of those on dialysis were employed full- or part-time at the time of the survey, although 69.0% were working immediately before initiating treatment for kidney disease. The percentage of those currently employed was considerably higher than USRDS data which showed that 18% of ESRD patients ages 18 to 60 were employed or in school 60 days post-treatment initation. 2 Those transplanted most closely approximated their pretreatment employment status, as 74.7% were working immediately before beginning treatment compared with 61.9% being currentlyemployed. Those who were not working full- or parttime were asked to identify the reasons they were not employed. Approximately 90% of the dialysis patients and 59.3% of those transplanted attributed their unemployment status to disability. While it is not surprising to learn that those on dialysis may view themselves as disabled, it is of concern to note the high number of those transplanted who continue to view themselves in this manner. Surprisingly, patients with HTN were as likely to view themselves as disabled as those with DM. Many within the renal profession have
urged early referral to nephrologists, because patients first presenting to nephrologists with an immediate need for dialysis have been shown to have higher mortality rates and costs associated with treatment than those followed by a nephrologist before dialysis initiation. 3 Additionally, early intervention, including education and counseling, by a nephrologist and social worker has been documented to enhance a patient's likelihood of remaining employed once dialysis is initiated.4 Results of the NKF survey also documented a positive correlation between being followed by a nephrologist longer than 6 months before initiating dialysis and patient employment status. Fiftyone percent of the 151 patients followed longer than 6 months before treatment initiation were currently employed, while only 35.8% of the 137 followed for less than 6 months were working. The differences in employment rate for those followed less than, or greater than, 6 months existed for both dialysis and transplant patients. The data, however, do not allow a determination of whether this difference may be owing to improved health resulting from early referral, facilitating maintenance of employment, or whether patients seen earlier by nephrologists may be able to do so by virtue of being employed and having insurance that paid for medical care. Although center hemodialysis (CH) typically does not offer as much flexibility for work or other activities as peritoneal dialysis (PD), there was little difference between treatment modality and employment status at the time of initiation of treatment. Level of education did correlate with employment of dialysis patients, as 82.8% of employed patients had attended college compared with 50.8% of those who were unemployed. This is not surprising as those with a college education would more likely be employed in white collar professions where physical labor is not required and flexible schedules are more likely. Lastly, it is a commonly held belief that efforts should be expended to assist those who are currently employed and initiating dialysis to maintain that employment, as it may be difficult to return to the workforce once unemployed. The data from this survey supported this hypothesis. Only 22.6% of all ESRD respondents who were unemployed before initiating
263
Factors Affecting Modality Selection
treatment were now working, compared with 52.5% of those who worked before dialysis and who subsequently remained employed after treatment initiation. Figure 1 provides information on the relationship between pretreatment employment status and current employment status for patients on both dialysis and with a kidney transplant. Patient Education and Treatment Initiation
A study conducted at the University of Missouri Medical Center documented that 47% of those initiating treatment presented with an urgent need for dialysis. 3 This compares with 17.8% of the NKF study respondents being followed by a nephrologist for less than 1 week before initiating treatment, 31.2% being followed for 1 month or less, and 42.7% being seen for more than 1 year. Approximately 46% of blacks in this survey were seen by a nephrologist for less than 1 month compared with only 24.7% of whites being followed for less than 1 month. A possible explanation for late referral of black respondents could be that they were more likely than whites to be unemployed and thus may have a higher likelihood of being uninsured. Respondents reported that they were most likely to receive information about options for treatment from their nephrologists (79.6%), although patients reported that both nurses
(46.1%) and social workers (19.1%) also provided treatment option education. Primary care physicians provided treatment modality information to 13.4% of the participants, underscoring the need to assure that these practioners are knowledgeable about all aspects of treatment. Dialysis and its many aspects are typically unfamiliar and initially overwhelming to most individuals, yet 24.4% of the respondents indicated they did not have the opportunity for one-on-one discussion about treatment selection with any health care provider before initiating treatment. Surprisingly, however, only 11.5% indicated they had received either too little or no information to facilitate treatment decision making. Respondents who began on center hemodialysis were more likely (14.3%) to believe they had received inadequate information than those who initiated some form of peritoneal dialysis (4.6%). The federal government mandates that all ESRD patients be educated about every treatment option for which they are medically suitable. Yet the NKF survey respondents reported that education about treatment options was not routinely provided, as is shown in Figure 2. Center hemodialysis was presented as an option to 83.6% of participants before initiating dialysis, while continuous ambulatory peritoneal dialysis (CAPD) was offered to only 49.4%. The low percentages of those
100.0%
80.0%
62.9% 60.0% 47.9% 400%
20.0%
0.0%+--Dialysis (n=203)
Transplant (n=83)
'-----_._Em~p_lo~ye_d_B_ef_or_e_ _I2I_N_o_tE_m--,--ployed Before
Figure 1. Currently employed ESRD patients.
264
Kilrren King
100%
83. 6% 80%
60%
40%
20%
0%
y.0~.o ~0'
0""
0~'?O
y.0~.o y.O~0
~'?o
~ef:.'
",0
,\~e'(j,~
Figure 2. Treatment offered before ESRD treatment initiation (n = 807).
reportedly offered home hemodialysis (27.0%) and automated peritoneal dialysis (APD) (23.3%) may partially explain why so few patients ultimately select these treatments. The NKF's educational materials on initiation of dialysis support the right of individuals with kidney failure not to initiate dialysis. Only 15% of those surveyed reported being told of this option, although it must be taken into account that this percentage does not reflect those who were informed and elected not to initiate dialysis. There was little variation in information provided about the right to refuse dialysis initiation or in the dialysis modalities offered to those ages 26 to 65. Racial variations in treatments offered before initiating dialysis were reported. Approximately 53.9% of white respondents reported being offered the option of CAPO, 44.2% were offered transplantation, and 19.2% were told they could refuse all treatment. Of the black respondents, 44.8% indicated they were offered CAPO, 33.1% were offered transplantation, and 9.8% were told about their right to refuse all treatment. Respondents were asked who made their initial treatment selection. Twenty-nine percent indicated what most would consider to be ideal, a joint decision between them, their family, and their nephrologist. This was followed by 22.5% who felt the nephrologist alone made the decision, and 17.7% who indicated they made an independent selection. Figure 3 shows that center hemodialysis was
the initial treatment for 92.5% of the respondents, and a form of home dialysis for only 6.9% of the respondents when modality selection was perceived to have been made soley by the physician. In contrast, 67.2% initially selected center hemodialysis and 31.3% a home modality when patients perceived they made the decision independently. The high percentage of individuals initiating center hemodialysis when nephrologists are viewed as making their treatment decisions is consistent with the findings of a study by Tiedke et a1. 5 Treatment Modality Three out of four participants initiated treatment on center hemodialysis. Twenty-three percent began on some form of peritoneal dialysis, with 17.6% of those on CAPO. Neither race nor gender appeared to be related to type of treatment selected. Those under age 25 were much more likely than those of other age groups to initiate treatment on APD, while those over 65 years of age more commonly began on center hemodialysis. The current treatment modalities of the survey participants were as follows: center hemodialysis, 65.6%; transplant, 16.9%; CAPO, 7.5%; APD, 4.7%; home hemodialysis, 2.4%; combination of automated and ambulatory peritoneal dialysis, 1.2%; and no treatment, 1.6%. The demographic profiles of these participants showed that 83.7% of blacks were on center hemodialysis compared with 56.5% of whites, while 23.3% of whites were current
265
Factors Affecting Modality Selection
100%
92.5%
80%
672% 60%
40%
20%
1.5%
0.6%
Physician Only (n=175) • Center Hemo
Patient Only (n=134) IZl Home Dialysis
o Transplant
Figure 3. Treatment decision-making.
transplant recipients compared with 6.0% of blacks. The educational levels of those on peritoneal dialysis and hemodialysis were similar. Approximately 50% had attended at least some college, while 69.6% of those who were transplanted had attended college. The number of those transplanted also increased with higher educational levels. Approximately 35% of all those with a post-graduate college degree were current transplant recipients compared with 13.3% of those with the highest level of education being a high school diploma. The majority (66.3%) of respondents who had ever been on dialysis had been on 3 years or less. Two hundred thirty-nine of the respondents (30.7%) had ever been transplanted, and 140 currently had a functioning graft. Approximately lout of 4 had received their transplant within the past year, and 43.0% had been transplanted a minimum of 4 years. Waiting time for a transplant ranged from 6 months or less (24.6%) to more than 2 years (34.0%). Satisfaction with Treatment and Movement Between Modalities Figure 4 shows that individuals indicated a high level of satisfaction with their current treatment modality, with only 4.3% being dissatisfied. An additional 14.8% indicated they were neither satisfied nor dissatisfied. Figure 5 details the satisfaction rate for each specific treatment. Those currently on APD expressed
the highest level of overall satisfaction (97.2%) followed by those transplanted (94.8%), those on CAPD (83.0%), those on center hemodialysis (76.8%), and those on home hemodialysis (72.2%). Individuals age 25 and under reported the lowest overall satisfaction (73.6%) with their treatment choice, and those over age 65 reported the highest (85.7%). Those who had been on dialysis either the shortest amount of time, less than 1 year, or the greatest, over 20 4.3%
80.9%
Figu re 4. Ove rall sa tisfaction wi th trea tment (n = 799) . • ; dissa tisfied; ~ , neither satisfied nor dissa tisfied; 0, satisfied.
266
Karren King
100%
80%
60%
40%
20%
0% APD (11=39)
Transplant (11=139)
CAPO (11=62)
Center Hemo (n=540) Home Hemo (11=20)
Figure 5. Patients satisfied with current treatment.
years, reported the highest overall satisfaction with their current treatment at 86.1% and 87.0%, respectively. Individuals who had been on dialysis from 10 to 15 years had the lowest satisfaction (73.2%). There was little difference in satisfaction between those whose primary cause of renal failure was diabetes or hypertension. A further attempt to assess satisfaction with current treatment was made by asking respondents if they would be interested in changing to another form of treatment if they could do so. None of the 129 transplant recipients who responded to this question indicated they desired to change, while 26.3% of those on dialysis reported they desired to do so, and another 13.7% were uncertain if they would make a change. Dissatisfaction with current treatment did not necessarily serve as a motivator for change, as 61.2% of those interested in changing also reported satisfaction with their current modality. Not surprisingly, 80.2% of respondents who desired to change would change from dialysis to transplantation. This was also the preferred change of those over age 65. Approximately 26% of those on CAPD who desired to change would be interested in moving to a form of APD, however, none expressed an interest in changing to hemodialysis. Sixteen percent of those on center hemodialysis who were interested in changing modalities indicated they would consider home hemodialysis, and another 27.4% of those on hemodialysis expressed an interest in peri to-
neal dialysis. No individuals of working age on any type of home dialysis were interested in changing to center hemodialysis. Survey participants were also asked if they had actually changed modalities owing to personal dissatisfaction with treatment. Of those who responded, 17.4% answered affirmatively. There was an average of 1.5 modality changes owing to personal dissatisfaction, with 63.5% changing once and 24.5% changing twice. Of 126 reported changes owing to personal dissatisfaction with treatment, 41.3% represented a move from hemodialysis to peritoneal dialysis and 34.9% from peritoneal dialysis to hemodialysis. Patients whose current treatment was hemodialysis were the least likely to have changed treatment owing to dissatisfaction (12.1%), while patients currently on peritoneal dialysis had the greatest previous dissatisfaction that resulted in change (31.8%). Thus, approximately one third of respondents currently on peritoneal dialysis were once on another modality, became dissatisfied with that treatment, and changed to a form of PD. A much smaller number of those on hemodialysis had been on another form of treatment and moved to hemodialysis after becoming dissatisfied. Advantages of Treatment Modality Respondents were asked to rank a listing of commonly perceived advantages for their current treatment in an attempt to understand what motivated them to make their specific
267
Factors Affecting Modality Selection
treatment choice. Those on center hemodialysis strongly considered having their treatment performed by staff and dialyzing only 3 times weekly as advantages. Those who were older, male, and white were most likely to state that staff performance of treatment was an advantage of center hemodialysis. The opportunity to interact with fellow patients, having no dialysis equipment or supplies in the home, and the absence of a peritoneal catheter were of less significance to this group overall. For those on peritoneal dialysis, having control over one's schedule and flexibility was seen as the major advantage to this form of treatment. Not having to travel to a dialysis facility 3 times per week was also of some importance, especially for those over age 65. Participants did not view the lack of needles for treatment, a less restricted diet, ease of travel, or independent treatment performance as strong assets of peritoneal dialysis. The main advantage of transplantation for nearly all of these recipients was having the opportunity to live what they perceived as a more normal life than dialysis allowed. Sense of Well Being Individuals were asked to describe their overall feelings about their life and health, which was also defined as sense of well-being. Approximately 92% of the transplant recipients indicated they felt very or somewhat positive about these aspects of their lives. Although as might be expected, those on dialysis expressed
a somewhat lower sense of well-being, 7 out of 10 did report that they felt positive about their life and health. There were no major differences in reports of quality of life among those on different dialysis modalities; between whites and blacks, who both reported feeling positively in approximately 75% of their responses; or with men and women, approximately 73% of whom reported positive feelings. Those reporting the lowest positive sense of well-being (65.7%) were under age 26, and those reporting the highest sense of well-being (77.2%) ranged in age from 26 to 45. As is shown in Figure 6, there appeared to be a positive relationship between one's sense of well-being and satisfaction with current treatment. Approximately 8 out of 10 who reported that they were satisfied with their treatment modality rated their sense of well-being positively, and only 5.0% of those who were satisfied with treatment rated their sense of well-being negatively. Conversely, 37.5% of those who were dissatisfied with their treatment rated their sense of well-being as positive, and 28.1 % of those who were dissatisfied with their treatment rated their sense of wellbeing as negative.
Conclusion These National Kidney Foundation survey results highlight possible areas for quality improvement by members of the nephrology community. Primary physicians should refer
100%
794%
343%
C
Salislied with Treatment (n=625) 0 Positive Well· Being
Dissatisfied with Treatment (n=32) • Negative Well·Belng
0 Neutral Well·Belng
Figure 6. Satisfaction with treatment and sense of well-being.
268
Karren King
those with progressive renal insufficiency to nephrologists soon after diagnosis, and the nephrologist should routinely involve other members of the renal team in treatment intervention and education. One third of survey participants being seen by nephrologists for less than 1 month before treatment initiation does not allow adequate time for either. The survey results also point out the need to assure that primary care providers, who provided education to 13% of the participants, are adequately informed about treatment options. Nephrology professionals have a further obligation to ascertain that those facing dialysis and transplantation are provided with unbiased education about their disease and treatment options. Reports that 24% of respondents were not provided the opportunity for one-onone discussions with their health care providers before beginning treatment should be of serious concern. The multitude of free and low-cost educational materials available makes it inexcusable for even 12% of these individuals to report they received inadequate or no education before initiating treatment. Without adequate information patients can not participate as equal, informed members of their renal team. Additionally, every treatment option must be offered to all persons with ESRD unless medically contraindicated. Individuals are being denied their right to participate in medical decision-making and make a choice that is most compatible with their lifestyle when only one modality is provided as an option to more than 50% of participants. How-
ever, when 8 out of 10 survey respondents report satisfaction with their current treatment and approximately three fourths report feeling positively about their life and health, this can also be viewed as a positive affirmation of the determination and resiliency of those with ESRD and the United States renal program.
Acknowledgment The author wishes to acknowledge the assistance of Beth Witten, MSW, ACSW, LSCSW, in the preparation of this manuscript. Both the author and the National Kidney Foundation, Inc. would also like to acknowledge Baxter Healthcare Corporation for its unrestricted educational grant in support of this survey.
References 1. United States Renal Data System: USRDS 1999 Annual Data Report. Bethesda, MD, National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Disease, April 1999 2. United States Renal Data System: Special Data Request. Bethesda, MD, National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Disease, April 1998 3. Hosokawa M, VanStone JC: The timing of referral of patients with end-stage renal disease. Dial Transplant 18:660-678, 1989 4. Rasgon S, Schwankovsky L, James-Rogers A, et al: An intervention for employment maintenance among bluecollar workers with end-stage renal disease. Am J Kidney Dis 22:403-412, 1993 5. Tiedke J, Bielski C, Kinas J, et al: Dialysis treatment: Are patients aware of their options? Nephrol News Issues 6:52-53,58,1992
I
ndividuals are unique, and as such, their rationale for selecting a specific treatment modality will vary dependent on their specific circumstances. Realizing this, yet desiring to quantify the multitude of factors that may influence such a decision, the National Kidney Foundation (NKF) designed a survey to gather this information and subsequently provide data that will guide the renal community in its work with those with chronic renal failure.
Objectives and Methodology The objectives of the study were four-fold: • to identify patient demographic differences by treatment modality; • to assess the impact of patient education on how treatment decisions are made; • to gather information about patient movement between treatment modalities; and • to examine patient satisfaction with treatment and sense of well-being.
pretable and used in the final data analysis. Not all 844 individuals responded to each question, and in these cases the total number of respondents on each item was used to calculate the percentages. It is also important to note that these respondents may not be representative of the entire ESRD population in the United States but rather reflect those with enough motivation and interest to both initiate contact with the NKF to request receipt of the newsletter and to return the survey. Thus, the data should be viewed as a selfreport of only those 844 individuals who participated.
Survey Results Participant Demographics Most respondents were ages 46 to 65 (37.8%), followed by those ages 26 to 45 (32.3%). The
From The National Kidney Foundation, Inc, Kansas City,
In 1995 the NKF distributed a patient selfreport survey to 5,000 persons with end-stage renal disease (ESRD) who were home subscribers to the NKF patient newsletter, Family Focus, to collect the necessary data. Eight hundred forty-four of the returned surveys were inter-
MOo Address correspondence to Karren King, MSW, ACSW, LCSW, National Kidney Foundation , Inc, 825 West Meyer Blvd, Kansas City, MO 64113; e-mail: [email protected]. © 2000 by the National Kidney Foundation , Inc. 1073-4449/00/0703-0009$3.00/0 doi:10.1 053/jarr.2000.8123
Advances in Renal Replacement Therapy, Vol 7, No 3 (July), 2000: pp 261-268
261
262
Karren King
majority of the respondents were white (62.7%), with 22.6% black, and the remainder identifying themselves with other ethnic groups. The participants were fairly highly educated, as 82.8% had a minimum of a high school education, with 27.4% of those graduated from college. Diabetes mellitus (DM) and hypertension (HTN) were identified as the two main causes of ESRD, at 20.0% and 23.1%, respectively. There are similarities between these findings and those from the United States Renal Data System (USRDS) 1999 Annual Data Report. This report shows that 38.8% of those on chronic dialysis or with a kidney transplant as of December 1997 were in the age range of 45 to 64, 61.3% were white, and 24.0% identified HTN as the cause of ESRD. The NKF sample, however, had fewer blacks and fewer individuals who attributed ESRD to DM than those reported in the USRDS data.! Patient Employment Data The NKF Family Focus survey examined employment data for those patients ages 18 to 55, typically deemed to be of prime working age. Only 36.7% of those on dialysis were employed full- or part-time at the time of the survey, although 69.0% were working immediately before initiating treatment for kidney disease. The percentage of those currently employed was considerably higher than USRDS data which showed that 18% of ESRD patients ages 18 to 60 were employed or in school 60 days post-treatment initation. 2 Those transplanted most closely approximated their pretreatment employment status, as 74.7% were working immediately before beginning treatment compared with 61.9% being currentlyemployed. Those who were not working full- or parttime were asked to identify the reasons they were not employed. Approximately 90% of the dialysis patients and 59.3% of those transplanted attributed their unemployment status to disability. While it is not surprising to learn that those on dialysis may view themselves as disabled, it is of concern to note the high number of those transplanted who continue to view themselves in this manner. Surprisingly, patients with HTN were as likely to view themselves as disabled as those with DM. Many within the renal profession have
urged early referral to nephrologists, because patients first presenting to nephrologists with an immediate need for dialysis have been shown to have higher mortality rates and costs associated with treatment than those followed by a nephrologist before dialysis initiation. 3 Additionally, early intervention, including education and counseling, by a nephrologist and social worker has been documented to enhance a patient's likelihood of remaining employed once dialysis is initiated.4 Results of the NKF survey also documented a positive correlation between being followed by a nephrologist longer than 6 months before initiating dialysis and patient employment status. Fiftyone percent of the 151 patients followed longer than 6 months before treatment initiation were currently employed, while only 35.8% of the 137 followed for less than 6 months were working. The differences in employment rate for those followed less than, or greater than, 6 months existed for both dialysis and transplant patients. The data, however, do not allow a determination of whether this difference may be owing to improved health resulting from early referral, facilitating maintenance of employment, or whether patients seen earlier by nephrologists may be able to do so by virtue of being employed and having insurance that paid for medical care. Although center hemodialysis (CH) typically does not offer as much flexibility for work or other activities as peritoneal dialysis (PD), there was little difference between treatment modality and employment status at the time of initiation of treatment. Level of education did correlate with employment of dialysis patients, as 82.8% of employed patients had attended college compared with 50.8% of those who were unemployed. This is not surprising as those with a college education would more likely be employed in white collar professions where physical labor is not required and flexible schedules are more likely. Lastly, it is a commonly held belief that efforts should be expended to assist those who are currently employed and initiating dialysis to maintain that employment, as it may be difficult to return to the workforce once unemployed. The data from this survey supported this hypothesis. Only 22.6% of all ESRD respondents who were unemployed before initiating
263
Factors Affecting Modality Selection
treatment were now working, compared with 52.5% of those who worked before dialysis and who subsequently remained employed after treatment initiation. Figure 1 provides information on the relationship between pretreatment employment status and current employment status for patients on both dialysis and with a kidney transplant. Patient Education and Treatment Initiation
A study conducted at the University of Missouri Medical Center documented that 47% of those initiating treatment presented with an urgent need for dialysis. 3 This compares with 17.8% of the NKF study respondents being followed by a nephrologist for less than 1 week before initiating treatment, 31.2% being followed for 1 month or less, and 42.7% being seen for more than 1 year. Approximately 46% of blacks in this survey were seen by a nephrologist for less than 1 month compared with only 24.7% of whites being followed for less than 1 month. A possible explanation for late referral of black respondents could be that they were more likely than whites to be unemployed and thus may have a higher likelihood of being uninsured. Respondents reported that they were most likely to receive information about options for treatment from their nephrologists (79.6%), although patients reported that both nurses
(46.1%) and social workers (19.1%) also provided treatment option education. Primary care physicians provided treatment modality information to 13.4% of the participants, underscoring the need to assure that these practioners are knowledgeable about all aspects of treatment. Dialysis and its many aspects are typically unfamiliar and initially overwhelming to most individuals, yet 24.4% of the respondents indicated they did not have the opportunity for one-on-one discussion about treatment selection with any health care provider before initiating treatment. Surprisingly, however, only 11.5% indicated they had received either too little or no information to facilitate treatment decision making. Respondents who began on center hemodialysis were more likely (14.3%) to believe they had received inadequate information than those who initiated some form of peritoneal dialysis (4.6%). The federal government mandates that all ESRD patients be educated about every treatment option for which they are medically suitable. Yet the NKF survey respondents reported that education about treatment options was not routinely provided, as is shown in Figure 2. Center hemodialysis was presented as an option to 83.6% of participants before initiating dialysis, while continuous ambulatory peritoneal dialysis (CAPD) was offered to only 49.4%. The low percentages of those
100.0%
80.0%
62.9% 60.0% 47.9% 400%
20.0%
0.0%+--Dialysis (n=203)
Transplant (n=83)
'-----_._Em~p_lo~ye_d_B_ef_or_e_ _I2I_N_o_tE_m--,--ployed Before
Figure 1. Currently employed ESRD patients.
264
Kilrren King
100%
83. 6% 80%
60%
40%
20%
0%
y.0~.o ~0'
0""
0~'?O
y.0~.o y.O~0
~'?o
~ef:.'
",0
,\~e'(j,~
Figure 2. Treatment offered before ESRD treatment initiation (n = 807).
reportedly offered home hemodialysis (27.0%) and automated peritoneal dialysis (APD) (23.3%) may partially explain why so few patients ultimately select these treatments. The NKF's educational materials on initiation of dialysis support the right of individuals with kidney failure not to initiate dialysis. Only 15% of those surveyed reported being told of this option, although it must be taken into account that this percentage does not reflect those who were informed and elected not to initiate dialysis. There was little variation in information provided about the right to refuse dialysis initiation or in the dialysis modalities offered to those ages 26 to 65. Racial variations in treatments offered before initiating dialysis were reported. Approximately 53.9% of white respondents reported being offered the option of CAPO, 44.2% were offered transplantation, and 19.2% were told they could refuse all treatment. Of the black respondents, 44.8% indicated they were offered CAPO, 33.1% were offered transplantation, and 9.8% were told about their right to refuse all treatment. Respondents were asked who made their initial treatment selection. Twenty-nine percent indicated what most would consider to be ideal, a joint decision between them, their family, and their nephrologist. This was followed by 22.5% who felt the nephrologist alone made the decision, and 17.7% who indicated they made an independent selection. Figure 3 shows that center hemodialysis was
the initial treatment for 92.5% of the respondents, and a form of home dialysis for only 6.9% of the respondents when modality selection was perceived to have been made soley by the physician. In contrast, 67.2% initially selected center hemodialysis and 31.3% a home modality when patients perceived they made the decision independently. The high percentage of individuals initiating center hemodialysis when nephrologists are viewed as making their treatment decisions is consistent with the findings of a study by Tiedke et a1. 5 Treatment Modality Three out of four participants initiated treatment on center hemodialysis. Twenty-three percent began on some form of peritoneal dialysis, with 17.6% of those on CAPO. Neither race nor gender appeared to be related to type of treatment selected. Those under age 25 were much more likely than those of other age groups to initiate treatment on APD, while those over 65 years of age more commonly began on center hemodialysis. The current treatment modalities of the survey participants were as follows: center hemodialysis, 65.6%; transplant, 16.9%; CAPO, 7.5%; APD, 4.7%; home hemodialysis, 2.4%; combination of automated and ambulatory peritoneal dialysis, 1.2%; and no treatment, 1.6%. The demographic profiles of these participants showed that 83.7% of blacks were on center hemodialysis compared with 56.5% of whites, while 23.3% of whites were current
265
Factors Affecting Modality Selection
100%
92.5%
80%
672% 60%
40%
20%
1.5%
0.6%
Physician Only (n=175) • Center Hemo
Patient Only (n=134) IZl Home Dialysis
o Transplant
Figure 3. Treatment decision-making.
transplant recipients compared with 6.0% of blacks. The educational levels of those on peritoneal dialysis and hemodialysis were similar. Approximately 50% had attended at least some college, while 69.6% of those who were transplanted had attended college. The number of those transplanted also increased with higher educational levels. Approximately 35% of all those with a post-graduate college degree were current transplant recipients compared with 13.3% of those with the highest level of education being a high school diploma. The majority (66.3%) of respondents who had ever been on dialysis had been on 3 years or less. Two hundred thirty-nine of the respondents (30.7%) had ever been transplanted, and 140 currently had a functioning graft. Approximately lout of 4 had received their transplant within the past year, and 43.0% had been transplanted a minimum of 4 years. Waiting time for a transplant ranged from 6 months or less (24.6%) to more than 2 years (34.0%). Satisfaction with Treatment and Movement Between Modalities Figure 4 shows that individuals indicated a high level of satisfaction with their current treatment modality, with only 4.3% being dissatisfied. An additional 14.8% indicated they were neither satisfied nor dissatisfied. Figure 5 details the satisfaction rate for each specific treatment. Those currently on APD expressed
the highest level of overall satisfaction (97.2%) followed by those transplanted (94.8%), those on CAPD (83.0%), those on center hemodialysis (76.8%), and those on home hemodialysis (72.2%). Individuals age 25 and under reported the lowest overall satisfaction (73.6%) with their treatment choice, and those over age 65 reported the highest (85.7%). Those who had been on dialysis either the shortest amount of time, less than 1 year, or the greatest, over 20 4.3%
80.9%
Figu re 4. Ove rall sa tisfaction wi th trea tment (n = 799) . • ; dissa tisfied; ~ , neither satisfied nor dissa tisfied; 0, satisfied.
266
Karren King
100%
80%
60%
40%
20%
0% APD (11=39)
Transplant (11=139)
CAPO (11=62)
Center Hemo (n=540) Home Hemo (11=20)
Figure 5. Patients satisfied with current treatment.
years, reported the highest overall satisfaction with their current treatment at 86.1% and 87.0%, respectively. Individuals who had been on dialysis from 10 to 15 years had the lowest satisfaction (73.2%). There was little difference in satisfaction between those whose primary cause of renal failure was diabetes or hypertension. A further attempt to assess satisfaction with current treatment was made by asking respondents if they would be interested in changing to another form of treatment if they could do so. None of the 129 transplant recipients who responded to this question indicated they desired to change, while 26.3% of those on dialysis reported they desired to do so, and another 13.7% were uncertain if they would make a change. Dissatisfaction with current treatment did not necessarily serve as a motivator for change, as 61.2% of those interested in changing also reported satisfaction with their current modality. Not surprisingly, 80.2% of respondents who desired to change would change from dialysis to transplantation. This was also the preferred change of those over age 65. Approximately 26% of those on CAPD who desired to change would be interested in moving to a form of APD, however, none expressed an interest in changing to hemodialysis. Sixteen percent of those on center hemodialysis who were interested in changing modalities indicated they would consider home hemodialysis, and another 27.4% of those on hemodialysis expressed an interest in peri to-
neal dialysis. No individuals of working age on any type of home dialysis were interested in changing to center hemodialysis. Survey participants were also asked if they had actually changed modalities owing to personal dissatisfaction with treatment. Of those who responded, 17.4% answered affirmatively. There was an average of 1.5 modality changes owing to personal dissatisfaction, with 63.5% changing once and 24.5% changing twice. Of 126 reported changes owing to personal dissatisfaction with treatment, 41.3% represented a move from hemodialysis to peritoneal dialysis and 34.9% from peritoneal dialysis to hemodialysis. Patients whose current treatment was hemodialysis were the least likely to have changed treatment owing to dissatisfaction (12.1%), while patients currently on peritoneal dialysis had the greatest previous dissatisfaction that resulted in change (31.8%). Thus, approximately one third of respondents currently on peritoneal dialysis were once on another modality, became dissatisfied with that treatment, and changed to a form of PD. A much smaller number of those on hemodialysis had been on another form of treatment and moved to hemodialysis after becoming dissatisfied. Advantages of Treatment Modality Respondents were asked to rank a listing of commonly perceived advantages for their current treatment in an attempt to understand what motivated them to make their specific
267
Factors Affecting Modality Selection
treatment choice. Those on center hemodialysis strongly considered having their treatment performed by staff and dialyzing only 3 times weekly as advantages. Those who were older, male, and white were most likely to state that staff performance of treatment was an advantage of center hemodialysis. The opportunity to interact with fellow patients, having no dialysis equipment or supplies in the home, and the absence of a peritoneal catheter were of less significance to this group overall. For those on peritoneal dialysis, having control over one's schedule and flexibility was seen as the major advantage to this form of treatment. Not having to travel to a dialysis facility 3 times per week was also of some importance, especially for those over age 65. Participants did not view the lack of needles for treatment, a less restricted diet, ease of travel, or independent treatment performance as strong assets of peritoneal dialysis. The main advantage of transplantation for nearly all of these recipients was having the opportunity to live what they perceived as a more normal life than dialysis allowed. Sense of Well Being Individuals were asked to describe their overall feelings about their life and health, which was also defined as sense of well-being. Approximately 92% of the transplant recipients indicated they felt very or somewhat positive about these aspects of their lives. Although as might be expected, those on dialysis expressed
a somewhat lower sense of well-being, 7 out of 10 did report that they felt positive about their life and health. There were no major differences in reports of quality of life among those on different dialysis modalities; between whites and blacks, who both reported feeling positively in approximately 75% of their responses; or with men and women, approximately 73% of whom reported positive feelings. Those reporting the lowest positive sense of well-being (65.7%) were under age 26, and those reporting the highest sense of well-being (77.2%) ranged in age from 26 to 45. As is shown in Figure 6, there appeared to be a positive relationship between one's sense of well-being and satisfaction with current treatment. Approximately 8 out of 10 who reported that they were satisfied with their treatment modality rated their sense of well-being positively, and only 5.0% of those who were satisfied with treatment rated their sense of well-being negatively. Conversely, 37.5% of those who were dissatisfied with their treatment rated their sense of well-being as positive, and 28.1 % of those who were dissatisfied with their treatment rated their sense of wellbeing as negative.
Conclusion These National Kidney Foundation survey results highlight possible areas for quality improvement by members of the nephrology community. Primary physicians should refer
100%
794%
343%
C
Salislied with Treatment (n=625) 0 Positive Well· Being
Dissatisfied with Treatment (n=32) • Negative Well·Belng
0 Neutral Well·Belng
Figure 6. Satisfaction with treatment and sense of well-being.
268
Karren King
those with progressive renal insufficiency to nephrologists soon after diagnosis, and the nephrologist should routinely involve other members of the renal team in treatment intervention and education. One third of survey participants being seen by nephrologists for less than 1 month before treatment initiation does not allow adequate time for either. The survey results also point out the need to assure that primary care providers, who provided education to 13% of the participants, are adequately informed about treatment options. Nephrology professionals have a further obligation to ascertain that those facing dialysis and transplantation are provided with unbiased education about their disease and treatment options. Reports that 24% of respondents were not provided the opportunity for one-onone discussions with their health care providers before beginning treatment should be of serious concern. The multitude of free and low-cost educational materials available makes it inexcusable for even 12% of these individuals to report they received inadequate or no education before initiating treatment. Without adequate information patients can not participate as equal, informed members of their renal team. Additionally, every treatment option must be offered to all persons with ESRD unless medically contraindicated. Individuals are being denied their right to participate in medical decision-making and make a choice that is most compatible with their lifestyle when only one modality is provided as an option to more than 50% of participants. How-
ever, when 8 out of 10 survey respondents report satisfaction with their current treatment and approximately three fourths report feeling positively about their life and health, this can also be viewed as a positive affirmation of the determination and resiliency of those with ESRD and the United States renal program.
Acknowledgment The author wishes to acknowledge the assistance of Beth Witten, MSW, ACSW, LSCSW, in the preparation of this manuscript. Both the author and the National Kidney Foundation, Inc. would also like to acknowledge Baxter Healthcare Corporation for its unrestricted educational grant in support of this survey.
References 1. United States Renal Data System: USRDS 1999 Annual Data Report. Bethesda, MD, National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Disease, April 1999 2. United States Renal Data System: Special Data Request. Bethesda, MD, National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Disease, April 1998 3. Hosokawa M, VanStone JC: The timing of referral of patients with end-stage renal disease. Dial Transplant 18:660-678, 1989 4. Rasgon S, Schwankovsky L, James-Rogers A, et al: An intervention for employment maintenance among bluecollar workers with end-stage renal disease. Am J Kidney Dis 22:403-412, 1993 5. Tiedke J, Bielski C, Kinas J, et al: Dialysis treatment: Are patients aware of their options? Nephrol News Issues 6:52-53,58,1992