Patient Views About Treatment of Stage 5 CKD: A Qualitative Analysis of Semistructured Interviews
Article Outline
- Abstract
- Methods
- Results
- Discussion
- Acknowledgements
- Supplementary Material
- References
- Copyright
Background
How patients choose between alternative treatments for kidney failure is poorly understood. Recent studies of chronic kidney disease report that clinical outcomes, such as life expectancy, are rarely reflected in a patient's decision for type of treatment compared with nonclinical outcomes, such as time on dialysis therapy, convenience, or impact on the family.
Methods
A qualitative analysis using thematic synthesis of patient views about renal replacement therapy (RRT) was undertaken. As part of a national study of patients and renal health care providers, we interviewed 95 Australian dialysis and transplant patients to explore how they perceive these alternative treatments.
Results
52 patients were on satellite hemodialysis therapy, 8 patients were on incenter hemodialysis therapy, 8 patients were on continuous ambulatory peritoneal dialysis therapy, 5 patients were on automated peritoneal dialysis therapy, 4 patients were on home hemodialysis therapy, and 18 patients had a functioning transplant at the time of interview. Freedom, convenience, self-care, effectiveness, and simplicity were commonly cited positive characteristics, whereas confinement, risk, family burden, pain, and time commitment were negative characteristics associated with RRTs. Characteristics were not specific to dialysis modalities, and some (eg, self-care) were seen as both positive and negative. A limitation of the study was that only 17 of 77 (22%) dialysis patients interviewed were on a home-based therapy.
Conclusions
Patients preferred RRTs that enhanced their freedom and autonomy and were convenient, effective, and simple. Treatments that minimized confinement and risk also were viewed positively. Our analysis suggests that patients might choose between therapies based on their perception regarding which therapy most embodies particular characteristics that minimize impact on their lifestyle. Presentation of information regarding RRTs should focus on these characteristics and the potential impact of alternative treatments on the patients and how they wish to lead their lives.
Index Words: Chronic kidney disease, dialysis, transplant, decision making
Clinical guidelines in the United States, Europe, United Kingdom, and Australasia recommend that a fully informed patient and his or her family participate in treatment decisions for stage 5 chronic kidney disease (CKD).1, 2, 3, 4 Options for treatment include automated (APD) or continuous ambulatory peritoneal dialysis (CAPD), hemodialysis (HD; center based or home based), transplant, and conservative management (supportive nondialytic care).
Health services, like other goods and services, often are chosen based on a patient's preference for particular characteristics, rather than the total service per se.5 A patient's specific preference for each characteristic of dialysis or transplant, such as their ability to travel or home-based versus hospital-based care, will influence the type of treatment he or she chooses. Recent studies of CKD report that clinical outcomes, such as life expectancy, rarely are reflected in a patient's decision for type of treatment compared with nonclinical outcomes, such as time on dialysis therapy, convenience, or impact on the family.6, 7, 8, 9, 10 Differences in treatment preferences for other chronic health conditions are also associated with sociodemographic factors, such as age and sex.11, 12
The aims of this study were to examine patient views about treatment for stage 5 CKD and define the characteristics of each form of treatment that were important to the patient. Knowing the specific characteristics associated with the different renal replacement therapies (RRTs) and people's views about those characteristics can help in planning renal services and also tailor appropriate education to new patients with CKD and their families.
Methods
Data Collection
Interviews with 95 nonindigenous patients from the IMPAKT (Improving Access to Kidney Transplantation) study conducted in Australian renal units in 2005-2006 were analyzed13 (Fig 1). The IMPAKT study investigated reasons for disparity in access to kidney transplants for indigenous Australians through a large-scale in-depth interview study involving patients, nephrologists, and key decision-making staff at selected Australian transplant and dialysis sites (Fig 2).14 Each patient was asked questions about why they chose the treatment they were on, if they were happy with their treatment, and if they thought they would be staying on that treatment. Our study included a subsample of IMPAKT study participants (Fig 1) for whom data had not been analyzed previously. Participants were interviewed by 1 of 3 researchers, and analysis of all transcripts was undertaken by 1 additional researcher (R.L.M.) in discussions with 2 of the interviewers (K.A. and J.D.). The interviewers were all female social scientists with extensive experience in qualitative research. None of the interviewers had a prior relationship with the participants; however, all participants were aware of the purpose of the study and gave informed consent.
Figure 1.
Participant selection. Abbreviations: APD, automated peritoneal dialysis; CAPD, continuous ambulatory peritoneal dialysis; HD, hemodialysis; IMPAKT, Improving Access to Kidney Transplantation.
Figure 2.
Map of Australia shows locations of participant interviews.
Participants were selected through a purposive or maximum-diversity sampling strategy to meet a number of specific objectives: (1) to represent locations where there was a high number of indigenous patients, (2) to include equal numbers of male and female participants, (3) to focus on including patients aged 18-65 years, (4) to maximize participation of non-English speakers, and (5) to represent a range of treatment types. Patients were approached directly by their renal nurse and given information about the study. If interested in participating, an appointment was arranged with the researcher to discuss possible participation in greater detail. Some patients declined participating in the interview because they were unwell on the day, had decided against transplant and therefore thought the study had no relevance to them, did not agree with research, thought the research held no benefit for them (ie, would not get them a transplant), or were not interested and no further reason was given. Interviews were conducted once in either the participant's home or renal unit (Item S1, interview question guide, provided as online supplementary material available with this article at www.ajkd.org). They ranged from 30-90 minutes and were audio recorded. Field notes and all interviews were completed and transcribed before analysis. Transcripts were returned to all participants, and feedback for any misrepresentations (member checking) was sought.
Ethics Approval
This study had ethical approval from the human research ethics committees of the relevant hospitals and universities in each Australian state.
Data Analysis
Each transcribed interview was entered into Nvivo8 software (QSR International, www.qsrinternational.com) for storing, coding, and searching qualitative data. Each transcript was read several times, and any attitudes, opinions, or experiences related to dialysis and transplantation from a patient's perspective were coded by 3 researchers (R.L.M., J.D., and K.A.). Experiences relating to particular RRTs were first grouped and then categorized by 2 researchers (R.L.M. and J.D.) as positive or negative depending on the context in which the comments were made. Finally, through an exhaustive process of analysis and comparison,15 data were arranged according to underlying characteristics.
For example, 1 participant on home dialysis therapy made the following comment: “I've got more control with what's happening to my body. I adjust the (dialysis) programme to how I feel.” This was initially coded under “views about home HD.” It subsequently was identified as a “positive” experience, and when grouped with similar comments about prescription flexibility, the underlying theme was inductively defined as “self-care.” The complete list of characteristics was reviewed independently by all authors.
Results
Participant Demographics
Most patients were Anglo-Australian men aged 50-69 years who were not employed (Table 1). Fifty-two patients were receiving satellite HD in a limited care setting: 8, incenter HD; 8, CAPD; 5, APD; 4, home HD; and 18 patients had a functioning transplant at the time of the interview (Fig 1). Seventeen of 18 transplant recipients had previously experienced dialysis therapy (94%) and 8 of 77 dialysis patients had previously received a transplant (10%). Fifty-four percent of patients had a carer or family member helping them manage their RRT (Table 1).
Table 1. Characteristics of Interview Respondents
| Patient Demographics (n = 95) | No. of Patients | % |
|---|---|---|
| Age group (y) | ||
 20-29 | 6 | 6 |
| 30-39 | 8 | 8 |
| 40-49 | 19 | 20 |
| 50-59 | 30 | 32 |
| 60-69 | 19 | 20 |
| ≥70 | 13 | 14 |
| Men | 56 | 59 |
| Ethnicity | ||
| Anglo-Australian | 74 | 78 |
| Australian plus other ethnicitya | 7 | 7 |
| Overseas bornb | 14 | 15 |
| Dependents | ||
| None | 65 | 69 |
| ≥1 | 30 | 31 |
| Carer support | ||
| Spouse | 16 | 17 |
| Family (eg, sibling) | 30 | 31 |
| Parent | 1 | 1 |
| Child | 3 | 3 |
| Friend/other | 2 | 2 |
| None | 43 | 46 |
| Living situation | ||
| Own home | 67 | 71 |
| Rented accommodation | 23 | 24 |
| With family | 1 | 1 |
| With friends | 1 | 1 |
| Hostel | 2 | 2 |
| Nursing home | 1 | 1 |
| Employment | ||
| Full-time | 30 | 32 |
| Part-time/casual | 7 | 7 |
| Student | 1 | 1 |
| Retired/pension | 8 | 8 |
| Not employed | 49 | 52 |
| Highest education | ||
| Tertiary | 26 | 27 |
| Completed secondary school | 10 | 11 |
| Midsecondary school | 46 | 49 |
| Primary school | 11 | 11 |
| Unknown | 2 | 2 |
| Current treatment | ||
| Transplantation | 18 | 19 |
| Incenter hemodialysis | 8 | 8.5 |
| Satellite hemodialysis | 52 | 55 |
| Continuous ambulatory peritoneal dialysis | 8 | 8.5 |
| Automated peritoneal dialysis | 5 | 5 |
| Home hemodialysis | 4 | 4 |
| Time on dialysis therapy (n = 77) | ||
| 0-6 mo | 13 | 17 |
| 7-12 mo | 14 | 18 |
| 1-2 y | 17 | 22 |
| 3-5 y | 19 | 24 |
| 6-10 y | 12 | 16 |
| ≥11 y | 2 | 3 |
| Prior renal replacement therapy | ||
| Transplant patients who had experienced dialysis | 17 | 94 |
| Dialysis patients who had experienced transplant | 8 | 10 |
| Patients who had experienced peritoneal dialysis | 38 | 40 |
| Patients who had experienced hemodialysis | 81 | 85 |
| Patients who had experienced peritoneal dialysis, hemodialysis and transplant | 8 | 10 |
aItalian (3), Spanish (1), Malay (1), Arabic (1), and Fijian (1). |
bIndian (2), English (1), New Zealand Maori (1), Fijian (2), Italian (1), Papua New Guinean (1), Chinese (1), Burmese (1), French (1), Arabic (1), and unknown (2). |
Patients highlighted the perceived benefits and harms of RRTs, which were categorized into 7 distinct positive characteristics and 10 negative characteristics. These were ranked from highest to lowest according to the number of participants who mentioned them (Table 2). Supporting participant quotations are listed in Table 3, and a complete list is available from the authors.
Table 2. Summary of RRT Characteristics That Are Important to Patients
| Characteristic | No. of Participants Who Mentioned Characteristic | Modalities Associated With Characteristic |
|---|---|---|
| Positive | ||
| Freedom: ability to carry on with daily activities uninterrupted, ability to travel | 37 | APD, CAPD, HHD, Tx |
| Convenience: treatment close to home | 24 | APD, CAPD, HHD |
| Self care: independence with dialysis prescription | 24 | APD, CAPD, HHD |
| Effectiveness: relative efficacy of 1 treatment compared to another | 19 | CHD, HHD |
| Simplicity: technical ease with therapy or staff assisted | 12 | APD, CAPD, CHD |
| Social inclusion: camaraderie between patients and social interaction with nursing staff | 8 | CHD |
| Security: reassurance provided by professional care | 6 | APD, CHD |
| Negative | ||
| Confinement: the “tie” to dialysis or the renal unit preventing daily activities or travel | 32 | APD, CAPD, CHD |
| Risk: perception of risk to health through a particular treatment | 28 | APD, CAPD, HHD, Tx |
| Family burden: the tasks of dialysis required of family members | 20 | HHD |
| Pain: related to dialysis procedures or medications | 20 | CAPD, CHD, Tx |
| Time commitment: hours devoted to treatment each week | 16 | CAPD, HHD, CHD |
| Subordination: having to “fall in line” with hospital rules | 14 | CHD |
| Dialysis access: unacceptable change in body image or restriction on physical activity | 13 | APD, CAPD, HHD, CHD |
| Self-care: perceived as a burden of responsibility above the capacity of patients and their families | 10 | CAPD, HHD |
| Impermanence: short-lasting therapies that would require a switch to HD | 7 | APD, CAPD, Tx |
| Home modification: structural changes to accommodate plumbing or increased storage space | 7 | APD, CAPD, HHD |
Table 3. Characteristics of Dialysis and Transplant From a Patient Perspective
| Characteristic | Comment |
|---|---|
| Positive | |
| Freedom | “The machine really freed me up a little. I could go out during the day.” –Woman, 50s, APD “So I continue to use machine at home and I, I'm working full time...Had I had to use hospital satellite dialysis centre, it couldn't have worked.” –Man, 50s, home HD |
| Convenience | “...but as I said with this [CAPD], I can do it at my leisure, and...I don't have to go out (to the hospital in this cold weather.” –Man, 60s, CAPD |
| Self-care | “And with the peritoneal, even though it's against the regulations...how I program it sometimes, but I look at how I feel. And I look at it, as long as I can, if I can wake up and do eight to nine hours work the next day I've succeeded.” –Man, 40s, APD |
| Effectiveness | “I believe this is the best treatment, you feel the best on it, and therefore, you know, your life expectancy, and you know, keeping illness at bay and whatever, is the best on this particular treatment.” –Woman, 30s, home HD |
| Simplicity | “[CAPD] is not near as good and simple as the machine. The machine's all automatic...A lot easier.”–Woman, 70+, APD |
| Social inclusion | “But I didn't mind it because the nurses here made it like a day out. It was terrific.” –Man, 70+, center-based HD |
| Security | One couple preferred center-based HD because they “...worried if something goes wrong in the house [with home HD], we don't know what to do and you know, it might be ahh causing, you know, life and death”. –Woman, 50s, center-based HD |
| Negative | |
| Confinement | “I just, it's a bit tied up, you know, for work or you can't do anything normal. You can't go anywhere. You're not free anymore.” –Man, 60s, center-based HD |
| Risk | “No, I'm not going to risk no transplant big operation at my age.” –Woman, 70+, APD |
| Family burden | “I said I will only do it on the condition that my mum is not a co-dialyser, she's there but she doesn't have to be the person to support me, basically I would do it by myself. Purely because I wouldn't want her to have any responsibility if something was to go wrong, I know herself she would feel as though it were her fault...” –Woman, 20s, center-based HD |
| Pain | “The only thing that I found was really quite upsetting that I found was horrible was when they first put all the fluid in, you know ...Yeah, oh, pain...The most painful thing I reckon.” –Woman, 40s, CAPD“I actually for a very long time could hardly walk because the [medication] did something to my muscles where I couldn't even, they were like wooden legs. And very painful.” –Woman, 50s, Tx |
| Time commitment | “I had to complete 4 bag changes daily and that took about 1 hour. I could not really go out and it just felt like I had no time. I normally love to catch up with friends and family for lunch or coffee but found I was not able to do this as time was short between the bag changes.” –Woman, 50s, CAPD |
| Subordination | “I wasn't really happy when I had to do the dialysis...in the unit, I found the whole process to be pretty cold...when you go in the dialysis unit, it's like, they just plug you in and that's it, you know, you're just part of the chair.” –Man, 50s, center-based HD |
| Dialysis access | “The fistula. I didn't like the look of that one. I said, no, no, I don't want that.” –Man, 60s, CAPD |
| Self care | “Coz the other option they gave me with the bag it's pretty hard...Coz I live on my own.” –Man, 50s, center-based HD |
| Impermanence | “You can go on for many years on PD, but the other guy's [doctor] pressures that you can't, the maximum life span of PD is 3.8 years. I've been on it 2. So.”–Woman, 30s, CAPD |
| Home modification | “Well, not only that with the [home] haemodialysis you have to have quite a bit of water. We're on tanks and we just couldn't do it.” –Man, 50s, center-based HD “ ...but also people that are looking at PD as an option, it's a lot of room you need for your stock.” –Woman, 50s, APD |
Positive Characteristics of RRTs From a Patient Perspective
FreedomThis characteristic related to a patient's ability to carry out their activities of daily living uninterrupted by treatment schedules or hospital appointments, as well as their ability to continue working, raise their family, or travel. Freedom was associated with APD, CAPD, home HD, and transplant (Table 2) and is illustrated by the following participant quotation.
“…with PD, it's brilliant because you can take your machine in a suitcase and they deliver all the stock to you, where you are going to be, it is just wonderful. And it does let you get out and about more.” –Woman, 40s, APD
Home-based dialysis was described as convenient because it decreased the need for hospital visits and commuting time.
“…the thing that persuaded us was, less travel to [city] 3 times a week. I work 4 days a week.” –Woman, 50s, home HD
This characteristic described the independence patients experienced in controlling and managing their dialysis prescription (ie, start time, number of hours, or fluid removal) to suit their lifestyle.
“…if there was a party or something I'd go on 2 days in a row, I have the flexibility of saying…well I'd go on that night, maybe only for 6 hours. We'd get home at midnight, I'd go on and come off at 6:00, 7:00 in the morning so the flexibility of home hemo is just so huge, it's the nearest thing to normality.” –Man, 50s, home HD
Patients perceived a relative effectiveness of 1 dialysis modality compared to another. This was typical of center-based HD and home HD compared with PD, as illustrated by the following quotation:
“I think the machine was a far better choice. I think it's more efficient…” –Man, 70+, center-based HD
This characteristic related to the technical ease of a therapy such as APD or the provision of staff setting up an HD machine for patients on center-based care.
“It's easier to come, come from work, come in here and get it done, go home, and then you don't have to worry about cleaning up anything, or, it's all done for you…” –Man, 40s, center-based HD
One of the positive characteristics of center-based HD was the camaraderie between patients, as well as the social contact with nursing staff.
“I could have gone back to PD but I find, I quite like this because now we get to social chat, [friend's name] and I have a chat. And really it's, I don't want to do it at home now…” –Woman, 60s, center-based HD
Some patients on center-based HD therapy felt reassured by the presence of professionally trained nursing staff managing their dialysis.
“I'm really happy when I'm here because everything's done for me and I don't have, worry about making mistakes, I don't worry about having infections, it's all done professionally.” –Man, 50s, center-based HD
Negative Characteristics of RRTs From a Patient Perspective
ConfinementThis characteristic described the physical “tie” patients experienced to dialysis or their hospital, limiting their ability to undertake activities of daily living, such as shopping, working, or travel.
“If I went to the shops, you got down there, you got to get back, and I couldn't stand the tie.” –Woman, 50s, CAPD
RiskSeveral RRTs were perceived to involve risk. Risk included kidney transplant rejection, death associated with major surgery, infection associated with PD, or collapsing at home on HD therapy.
“…just as I was about to decide to do it and they'd considered putting me as a single person doing like without a co-dialyser and this guy crashed really badly here and I looked at that and I thought now what would I do if I was at home if that did happen what would I do so it changed my mind I thought no, it's not worth it.” –Man, 50s, center-based HD
This characteristic was associated with home-based dialysis and described the reluctance patients had to put dialysis “upon” their families.
“What's the point in having it at home? I don't want to go back to the unit. My sister, she's older than me. She's not in good health either, so I'm not going to put a burden on her.” –Man, 70+, center-based HD
PainThis characteristic was associated with many dialysis procedures, including cannulation and PD fluid drainage, as well as side effects of transplant immunosuppression.
“…oh and it would be so painful. One time I had to have 6 injections of, what do you call it, the pain killer thing, the local anaesthetic.” –Woman, 50s, center-based HD
Patients described the time-consuming nature of dialysis, home training, and appointments in their initial posttransplant period. This time commitment took away from time usually spent on other activities.
“Well I wasn't you know, people, friends of mine said no, no you know, you are getting enough [dialysis], you've got to put your life first…I did 6 times a week for awhile and then it just became too much.” –Man, 30s, center-based HD
This characteristic described patients' feelings of having to “obey” instructions and accept treatment from their renal staff. Subordination was predominantly associated with center-based HD.
“I've never really experienced that before in my life, and the whole process of being a recipient of something like that where you're completely passive and you can't do anything.” –Man, 50s, center-based HD (describing his experience being cannulated by nursing staff)
Dialysis AccessThe presence of a fistula or PD catheter was an unacceptable change in body image for some patients, as was the restriction on physical activities that dialysis access caused.
“…we've got a swimming pool and stuff and if you've got the tube you're not allowed to swim and stuff so that didn't suit my lifestyle.” –Woman, 40s, center-based HD
This was perceived as a negative characteristic by some patients in which the burden of responsibility associated with home-based dialysis, such as CAPD and home HD, was too great.
“I had the choice of home, home dialysis and stuff like that, but I'm not a medical type person and I didn't think I could cope.” –Woman, 70+, center-based HD
ImpermanencePatients perceived transplant and PD to be short-term therapies that would ultimately result in a transition to HD.
“You know people tell you that errm, doctors and such, they tell you that errm, getting a transplant they, you know, they don't last very long…You know couple of years, maybe you know, 5 years at the most then you're looking to have another one.” –Man, 50s, CAPD
A characteristic of home HD and PD was the modifications required for patients to dialyze at home and the space needed for storage of supplies.
“You've got to have the storage for all of the gear, you've got to have a room specifically for dialysis. Some people have put them in their lounge room. Some have a room that they use just for the machine. And then you've got all the wiring, the plumbing, which initially I think the hospital covers, but if you relocate or move, then you have to cover the cost yourself.” –Woman, 30s, home HD
Patient age, comorbid conditions, prior experience, and geographic location also were associated with preferences for treatment. Patients aged > 70 years were less likely to consider transplant as a preferred treatment option. For example, 1 elderly couple who lived in regional Australia were concerned about the uncertainty of timing of a deceased donor organ and did not believe they could cope with getting to hospital at short notice, which was 4-5 hours' drive from their home. For another elderly patient with comorbid conditions, the thought of transplant was quickly dismissed.
“No, I decided right from the word go that I wasn't having a transplant at 80 years of age.” –Woman, 70+, APD
Patients living in a regional area some distance from center-based facilities were more likely to prefer a home-based dialysis modality.
“I'd like to see a smaller machine like this that you can have in your house…To save us coming in here because, I know the odd person who comes a 180 mile down…it's still a long trip every 3 days, to come down to here.” –Man, 50s, center-based HD
The effect of the patient's prior experience with a specific RRT also influenced their views on treatment. Patients who had experienced dialysis therapy before transplant were more likely to focus on the time commitment involved with dialysis and also the risks (such as rejection, infection, and death) associated with transplant. Patients who had experienced a failed transplant and returned to dialysis therapy saw self-care as a negative characteristic associated with home-based dialysis. They also consistently reported pain with HD cannulation and confinement associated with being on dialysis therapy. The influence of prior experience also extended to parents or siblings who had RRT for stage 5 CKD.
“…while my dad had a transplant he had such a horrific time. After dad's transplant with the drugs he was on he wasn't the same person. The immune drugs are pretty powerful and are cancer causing. Everyone says it would be great to have a kidney transplant but I am not 100% sure about it.” –Woman, 50s, APD
The 1 characteristic we did not find associated with specific views about the characteristics of dialysis and transplant was patient sex. Nearly all characteristics were mentioned equally by both male and female patients.
Discussion
Patients preferred RRTs that enhanced their freedom and autonomy and were convenient, effective, and simple. Treatments that minimized confinement and risk also were viewed positively. Only 1 patient mentioned longevity as a positive characteristic associated with dialysis. Although transplant was perceived to closely resemble normal life, the risks associated with major surgery and immunosuppression were seriously considered by patients, within the context of their age and their prior experience.
Three interesting observations arose from this study. The first was that many relevant characteristics were not specific to 1 form of RRT, (ie, specific to only PD, HD, or transplant). For example, the positive characteristic of “freedom” was not associated with just APD, but also with nocturnal home HD. The relative sense of freedom came from the therapy being overnight, freeing up the daytime for other activities, rather than being specific to HD or PD. “Pain” also was associated not only with HD cannulation, but also with PD fluid drainage and early transplant. Likewise, “risk” was associated with all therapies, including transplant surgery, managing hypotension at home while on home HD therapy, and trying to avoid peritonitis while on PD therapy. Impermanence was another characteristic common to both PD and transplant (Table 2).
The second finding of note was that some characteristics were seen as both positive and negative. Self-care, defined as the ability to manage care independently, was viewed positively by many patients. This was observed in comments about “being one's own boss” or satisfactorily troubleshooting dialysis at home. However, other patients viewed a self-care modality as undesirable. They did not feel competent in their self-care abilities and preferred trained nursing staff to assume full responsibility for their treatment.
Finally, comparative longevity was not a major factor in patients' decision making regarding modality selection.
Many characteristics of RRTs from our study were similar to those reported by others. Bass et al16 found that body image, spontaneity, self-care, and scheduling were important characteristics to patients on dialysis therapy. Additionally, they reported that patients' inability to sleep on dialysis therapy and decreased sexual relations were important considerations in modality choice.16 de Wit et al17 and others found that daytime freedom associated with APD was a positive contributor to patients' mental well-being, whereas McLaughlin et al18 reported that home HD was associated negatively with needle phobia, fear of failure, and lack of space at home to incorporate the machine and supplies. We did not find other references to impermanence of treatment as a characteristic of dialysis or transplant.
Health professionals may hold assumptions about what patients want (eg, that most patients want a kidney transplant). However, as this study has shown, there may be particular reasons why 1 therapy was preferred over another. That is, the balance of positive and negative characteristics for different modalities may vary among patients because individuals may give different weight to particular characteristics. Our study suggests that the characteristics of each treatment are viewed by patients within the context of their age, comorbid conditions, lifestyle, and geographic access to renal services. Prior experience with dialysis or transplant also is influential on patients' views and preferences for specific treatments.
Strengths of this study include that it was based on almost 100 in-depth interviews, consulting a range of patients with end-stage kidney disease on all renal replacement modalities in urban, regional, and remote locations in 5 Australian states. It used validated qualitative research techniques19 and identified characteristics from those with first-hand experience of transplant, PD, and HD. Weaknesses of this study include the analysis of data that had already been collected for the purpose of a study designed to improve access to kidney transplant. Although the questions asked in the semistructured interviews were directly relevant to our aims, had the interviews been structured specifically around treatment decision making, additional qualitative findings may have been elucidated. Smaller numbers of patients on home HD therapy might have limited the data collection, and consequently, we might not have captured the complete range of patient views (data saturation) regarding these therapies.
Results from this study describe a set of modality characteristics that patients appear to use to make decisions about choice of therapy. The characteristics are not modality specific. It is noteworthy that patients rarely mention characteristics that the health system prioritizes, such as survival. Education regarding RRTs should focus on the characteristics that are relevant to patients, and renal service planning should take these issues into account. Future studies should explore whether these same characteristics influence choice among children and adolescents and how they are taken into account by renal service providers. In addition, characteristics that influence choice of RRT from this study could be used in discrete choice analysis to allow assessment of the trade-offs patients are willing to make, for example, the downsides a patient is willing to accept in return for the upsides.
Our analysis suggests that patients do not necessarily have a preference for a specific RRT. Instead, patients might choose between therapies based on their perception regarding which therapy most embodies particular characteristics that minimize impact on their lifestyles. Presentation of information regarding RRTs should focus on these characteristics and the potential impact of alternative treatments on the patient and how he or she wishes to lead his or her life..
Acknowledgements
The authors acknowledge the support of the study participants, participating treatment sites, transplant units, and their associated reference groups. The authors specifically thank Joan Cunningham for helpful comments on the final draft of the manuscript and Cilla Preece for conducting a large number of patient interviews.
Support: Ms Morton is supported by a university postgraduate award and through National Health and Medical Research Council (NHMRC) grants #457281 and #571372. Dr Cass is supported by Senior Research Fellowship #457101 from the NHMRC. The IMPAKT study was funded by NHMRC Project Grant #236204.
Financial Disclosure: The authors declare that they have no relevant financial interests.
Supplementary Material
Supplementary Item S1 (PDF) Question Guide for Semistructured Patient Interview
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Originally published online as doi:10.1053/j.ajkd.2009.11.011 on February 1, 2010.
PII: S0272-6386(09)01580-7
doi:10.1053/j.ajkd.2009.11.011
© 2010 National Kidney Foundation, Inc. All rights reserved.
