Qual Life Res DOI 10.1007/s11136-013-0600-9
Shifting responses in quality of life: People living with dialysis Barbara A. Elliott • Charles E. Gessert Pamela M. Larson • Thomas E. Russ
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Accepted: 4 December 2013 Springer Science+Business Media Dordrecht 2013
Abstract Purpose People assess their quality of life (QoL) using internal standards, values, and priorities. With health changes, QoL responses shift to reflect current realities. This qualitative study investigated the life experience and QoL assessments of people living with dialysis (PWDs). Methods Thirty-one interviews with 20 PWDs over the age of 70 (mean time on dialysis 34 months) and 11 family members investigated experience with disease and dialysis, related life challenges, medical decision-making, and future planning. Interviews were recorded, transcribed, and analyzed for themes and hypotheses using qualitative methods and description. Results When beginning dialysis, PWDs’ reported that life on dialysis was worth living and recalibrated their QoL assessments incorporating this standard into their daily lives. Three themes emerged as the disease progressed and dialysis became more difficult: PWDs first reported thriving on dialysis and then surviving with the support of dialysis, and when QoL was reported as poor, PWDs were reconsidering whether dialysis was still worth the life it was providing. Each of these steps involved changes in health circumstances, and PWDs explained their QoL assessments at each step using differing values and priorities. These steps in reconceptualization and reprioritization
B. A. Elliott (&) University of Minnesota School of Medicine, 1035 University Drive, Duluth, MN 55812, USA e-mail: [email protected] C. E. Gessert Essentia Institute of Rural Health, Duluth, MN, USA P. M. Larson T. E. Russ Essentia Health, Duluth Clinic, Duluth, MN, USA
demonstrated PWDs’ Response Shift and eventually led to another (recalibrated) standard: Life with dialysis was no longer worth living. Conclusions Quality-of-life assessment is an on-going process for older dialysis patients. Clinicians should be alert for changes in subjective QoL statements as dialysis and underlying diseases progress. Response Shift explains these changes in assessment. Keywords Response Shift Quality of life End-stage renal disease Dialysis Qualitative research
Dialysis allows an increasing number of elders to live with chronic kidney failure [1]. Today, the highest rates of incident dialysis are among people over age 70 [2–4]. Many elders survive and even thrive while living with the support of dialysis, although a considerable portion of this population has also been described as frail [1, 5]. Elders living with end-stage renal disease (ESRD) are living with a progressive, life-ending disease. Dialysis keeps them alive, but does not extend the length of their lives greatly. Data released by the United States Renal Data Service in 2011 revealed that in 2009, dialysis patients who died after the age of 70 had been living on dialysis for an average of 2.9 years, with a median of 1.9 years [6]. The adjustment to starting dialysis engages each person’s coping process [7]. The psychological steps involved in the coping process are based on adjustments in the person living with the support of dialysis’ (PWD) perception of life, given the new circumstances. Once the primary adjustment has occurred, the PWDs’ reassessment of their quality of life continues, based on the progression of their illnesses and the burden of their treatments (including dialysis) [8]. Most PWDs achieve a relatively stable level
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of adaptation within 6 months of beginning dialysis [9–11]. Once this adjustment is accomplished, PWDs indicate that they have meaningful lives [8, 12–14] and are satisfied [8, 13–15], even though they also describe their quality of life (QoL) as constrained [8]. These observations about PWDs’ quality of life and their adjustments have been documented using quantitative measures. Over the past 15 years, the Kidney Disease Quality of Life Short Form [KDQOL-SF, 16] has been used to assess PWDs’ QoL. This instrument is an iteration of the widely endorsed SF-36TM with additional questions specific to symptoms of kidney disease. Once the initial adjustment to dialysis has been accomplished, the profiles of QoL scores for PWDs reflect physical limitations, but their mental health scores are comparable to age-matched groups [10, 15, 17]. Scholars in QoL research have observed that the QoL assessment process engages the person’s values and priorities, as well as their appraisal process [18, 19]. Over time, as a person lives with changing health circumstances, the responses to QoL assessment questions are observed to change reflecting their new circumstances. The changes in a person’s QoL assessments as they encounter and adjust to new circumstances are described as Response Shift. Adjustments result from changes in the a) internal standard for QoL measurement (recalibration); b) relative importance of the domains that define QoL (reprioritization); and c) concept of QoL and the values that weave together creating it (reconceptualization) [20, 21]. The methodological challenges of measuring these changes, and of clarifying how the shifts complicate our understandings of QoL measurements, have been the focus of multiple studies since 1999, when the concept of Response Shift was introduced [22–24]. The quantitative approaches to measuring Response Shift have been complemented with a limited number of qualitative efforts. The qualitative projects have provided narrative examples of the changes that make up the elements of Response Shift. For example, these projects have documented that recalibration accompanies changes in functional ability [25] and seems to occur as an inevitable consequence of a perceived life-threatening health experience [26, 27]. Reconceptualization and reprioritization have been documented as changes in reported goals and changes in identified areas of concern; these issues evolve throughout a serious illness, until death [28–30]. More recently, the SEIQOL-DW [31], an individual QoL tool, has been employed to identify the domains of a PWD’s life that are relevant when living with dialysis [32]. The family and health domains were the areas most commonly identified by PDWs in the SEIQOL, and these domains correlated with mental well-being despite the illnesses and dialysis [32]. Since this study was cross-sectional, it
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described the priorities assigned to these domains at the time of the project. Previous scholarship has established that reports of health-related quality of life provide a one-time indicator of the person’s health. However, as health changes, the person adapts to new circumstances, and the appraisal process involved in a QoL assessment incorporates changing standards, priorities, and values—the responses shift. These internal changes result in difficulties interpreting QoL scores both in research and in clinical settings. The scores cannot be considered reliable indicators of a person’s QoL over time, despite being a single person’s own responses to identical assessment questions. Shifting responses have been demonstrated quantitatively [33], but clarification regarding the clinical and scholarly use of QoL assessments remains challenging. Originally, this qualitative study was undertaken to improve the general understanding of elders’ lives while living with dialysis and to provide new insights into the values and decision-making of older dialysis patients and their families. The findings presented here include the PWDs’ descriptions of their QoL experiences and report the PWDs’ reasons for the changes in their QoL as their health changed.
Methodology This qualitative research study was approved by the Institutional Review Boards at Essentia Health, in Duluth, MN, and at the University of Minnesota, Minneapolis, MN. Accrual and data collection methods The study population was comprised of PWDs with ESRD over the age of 70 who had been on dialysis for at least 6 months and their close family members. Potential subjects who met these inclusion criteria were identified by the St. Mary’s Duluth Clinic (SMDC) Nephrology Department in Duluth, Minnesota. The list of potential subjects was screened by the SMDC nephrologists to eliminate individuals who, in the view of their physicians, would be likely to find participation in the study burdensome (due to cognitive impairment, debility, instability or other reasons). The Nephrology Department then mailed an information package about the study to the remaining potential subjects. The information included a brief introduction to the study and an invitation to indicate interest in learning more about the study by calling the study staff or by returning a brief form. Study staff contacted potential subjects who expressed interest in the study to assure that they met the inclusion criteria, to provide additional information and to answer
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questions about the study. An appointment was made for the research team to meet with the PWD and/or family member, either in the PWD’s home or where the PWD received care. At the beginning of each interview, the purpose of the study was explained, informed consent was obtained, and each participant completed a brief questionnaire on demographic and contact information (see Table 1). The interviews were recorded and used an open-ended, qualitative format. An Interview Guide kept the discussion focused on the seven themes: (a) PWDs’ and families’ experiences with kidney disease and dialysis, (b) how they have managed to now, (c) what has affected the course of their disease, (d) reasons to continue/forego dialysis, (e) any advance care planning to date, (f) any other topics they would like to discuss, and (g) advice to improve care of people receiving dialysis. In addition, predetermined probes (questions) for desired follow-up were prepared as part of the Interview Guide (see Table 2). Data analysis In keeping with standard qualitative research methods [34], data collection and analysis were simultaneous and continuous [35]. That is, data analysis was started as soon as the transcripts from the first three interviews were available. Subject accrual and data collection were continued until Table 1 Demographics of ESRD patients in study (N = 27) Dialysis patients N (%)
Table 2 Interview Guide The lead questions numbered 1–7 were used with each interview. The probes under each lead question were used when needed to augment the discussion 1. Tell us about your experience with kidney disease and dialysis. Probes: How has kidney disease affected your life; your mood, outlook, and attitudes; your family and friendships? Describe what has been important in your experience 2. In general, how have you managed up to now?
Race—Caucasian
27 (100 %)
Gender: male
15 (56 %)
Age
80.6 years (Range 70–100)
Marital status
Probes: Tell us about your personal outlook or values; the role of family and social relationships; religion and spirituality. What sources of support have you had? 3. What do you think has affected the course of your kidney disease?
Married
18 (66 %)
Widowed
8 (30 %)
Probes: Tell us about your role, the roles of your family, your care providers, and nature or fate in the course of your illness
Never
1 (4 %)
4. Tell us about your decision to continue dialysis/forego dialysis
Best possible
2 (11 %)
Good
10 (56 %)
Probes: How does this fit into your life (story)? What has been most important? How long have you been thinking about this? Who else has been influential in your decision?
Fair
4 (22 %)
Quality of life (N = 18)
Poor
2 (11 %)
Worst possible
0
Months receiving dialysis (mean) a
Interviews
Patient only
a
‘‘saturation’’ had been achieved in the data analysis, at which time accrual was stopped [35]. While it was initially anticipated that a total of up to 40 cases would be needed to achieve saturation, the investigators felt that saturation had been achieved after approximately 30 interviews. Data analysis began with proofing the draft transcripts against the recordings [35]. In keeping with the exploratory nature of this research, no a priori template of codes was used. Instead, the analytic process was essentially inductive in nature, with codes and categories emerging from the language and ideas of the interview participants. Data were indexed, coded, and interpreted using the steps outlined by Frankland and Bloor [36]. The proofed transcripts were read by each of the three investigators (BAE, CEG, PML) independently for a ‘‘sense of the whole.’’ During the first phase, the three investigators identified codes they attached to words, phrases, and blocks of text to organize the data in the transcripts. The investigators then met to develop a unified system of coding, integrating and reconciling their coding and terms, and to identify emerging categories (groups) of codes. The independent coding of the text and
5. Tell us about any conversations you have had about advance care planning. Probes: What about healthcare directives, living wills, and advance directives? What are your wishes now? Who have you talked with? Who is your proxy/decision-maker?
34 Pt
Family
18
Patient and family
2
2
Family only Totals
0 20
9 11
N = 27 PWD units, with 31 individual interviews
6. Is there anything else you would like to tell us about? Probes: Are there issues with family burden or family conflict; finances; religion; faith; treatment burden; symptoms; control? 7. What advice do you have for improving the support of people with CKF? Probes: Do you have any suggestions in regard to the care of the patient or the family?
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the subsequent reconciliation of coding were important steps in view of the difficulty that different readers of the same transcripts sometimes have in arriving at the same conclusions [35, 37]. Q.S.R. NUD*IST V5, a qualitative software program, was used to allow for comparisons among interviews. Finally, the data were interpreted to generate tentative themes and working hypotheses regarding the experiences of these participants.
moving toward the end of their lives. In addition, their comments revealed how they struggled to explain their QoL responses when they were living with changing circumstances. The shifts in their responses were evident as their circumstances changed. Their quality of life was described using the priorities they were assigning to their highly valued, personally important concerns. The primary adjustment
Results Careful review of interview transcripts revealed how these PWDs assessed their QoL and how their responses shifted with diminishing health. The PWDs’ comments offer insights regarding Response Shift in the setting of endstage renal disease and about the theoretical concept of Response Shift. As detailed in Table 1, the study enrolled 27 PWDs; their average age was 80 ± 6.7 years (range 70–100). Fifteen PWDs (56 %) were male. These PWDs had lived with diagnosed kidney disease for an average of 112 months and had been receiving dialysis for an average of 34 months. The PWDs were all Caucasian, and their average Charlson score was 6.42 (N = 24; range 2–12). Most of the PWDs were married or widowed, and most lived in their own homes or apartments. Of the 18 PWDs who provided quality-of-life ratings to the one-item question ‘‘How would you rate your overall quality of life? (worst possible; poor; fair; good; best possible),’’ two PWDs indicated ‘‘poor,’’ four PWDs ‘‘fair,’’ ten PWDs ‘‘good,’’ and two PWDs ‘‘best possible.’’ Over 2 years, thirty-one interviews were completed with these PWDs and family members. The sample included eleven PWDs who were actively considering the discontinuation of dialysis. These PWDs were specifically recruited so we could focus on decision-making in that phase of life. Family members of these eleven PWDs were also interviewed; in nine cases, only the PWD’s family member was interviewed as the PWD was no longer able to respond due to the disease progression toward death. Thus, as Table 1 indicates, the interviews included 20 with PWDs and eleven with family members of PWDs (seven children and four spouses). Each interview was completed independently and lasted approximately an hour. The interviews provided a rich description of these PWDs’ life experiences while living with the support of dialysis. Several themes regarding their QoL became evident. The interviewees reported how QoL changed drastically when dialysis began, and then, how they assessed quality of life when they were thriving with dialysis, when they were ‘‘getting by’’ or surviving, and when their quality of life had become so poor that they were consciously
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The participants in this project recalled easily and clearly how their lives changed when dialysis started. They described two major changes: The reason they were alive had changed (dialysis now made life possible) and the way they spent their time each day was changed (dialysis was part of their daily schedule). • •
•
•
Dialysis so completely changes your life. I mean it’s just you are tied to that dialysis schedule. It runs your life. Well, there’s one thing too you gotta remember, one thing you gotta remember in the morning…. when you roll out of bed and your feet hit the floor: it’s gonna be another day, and it wouldn’t have been…if I wouldn’t have been on dialysis. I tried to think about what I could do the rest of my life even though I am on dialysis. Well, I just made up my mind and I’m a determinate person…I’ve always accepted things…I believe what the doctors tell me and well if that’s gonna be what it is, that’s what it is and nothing that you can do about it. She loved her job! She loved working there. It was her social outlet and she loved her work and so having to retire because dialysis was gonna be 3 days a week was very, very hard on her.
Thriving: best possible QoL Several of the PWDs who were interviewed described having an excellent QoL. One man said, ‘‘I’m enjoying life as I live it, I, it’s still a good life.’’ Others went on to describe how they created this good life: •
•
•
It’s my job. Yeah, Tuesdays and Thursdays off. I got Tuesday, Thursday, Saturday and Sunday, 4 days a week when I don’t have to be there! (Chuckles) And, so when I’m not on dialysis, I just forget about it and go about my living! Actually the one thing I’m looking forward to right now is a, going to the Elk’s Club this Friday night. There’s a steak president’s night…and it will be a good party, it’ll be a good time. I work, I’m volunteering, I do that 3 days a week 1 week and 2 days the next week and that has really
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helped. It gets me out of the house and I get to see different people. The values and priorities they brought to this positive assessment of their reconceptualized QoL (‘‘Thriving’’) were also described: •
•
I guess this comes…because I’m a retired army officer and you gotta do certain things, certain, whatever it might be and that’s what you do. Well, I find that since I’ve been on dialysis, it’s been a case of whatever dialysis says, that’s what I’m gonna be doing…If they’ve set up goals, objectives, you gotta go on a diet, you gotta do this—you follow them. It was such a shock to, to have two or three beers, ya know. They really taste good when it’s cold. But then when you go in the next morning and step on that scale and the kilos are high…I still take a drink on Friday nights but…ya know, it isn’t beer.
‘‘Surviving:’’ good QoL Many PWDs were well aware that kidney disease and the burdens of dialysis take their toll on a body’s physiology. The PWDs who were interviewed included those whose health and activities were changing: •
•
•
I don’t get around as much as I did. I did start going to a….smear [card] game at the senior center. That’s just one afternoon and…there are other places to go and play cards, I’m sure, which I always have done, but I don’t do that as much anymore. They have a widow support group there I belonged to for awhile, before I was in the wheelchair, now, and I had a car then, I could drive. Now, I had to give up my car because it wasn’t safe for the wheelchair, getting in and out and everything. And I am limited somewhat because I have this neuropathy in my hands and feet. Well, what I do when I’m dialysis is I read. Because that’s the only thing I can do with one hand.
The PWDs noted that these changes also brought new insights regarding their QoL, as it moved from one of ‘‘Thriving’’ to becoming one of ‘‘Surviving.’’ At this point, PWDs did not question their basic standard regarding QoL (participating in life was dependent on continuing dialysis), but their priorities became clearer: Family support and not being a burden were increasingly important. •
And see, I don’t believe that my life just is mine…it belongs solely to me. It does not, it belongs to my family and people who depend on me and people who care, it’s not just mine to do nilly-willy with what I want…it isn’t.
•
•
Let’s put it this way, I’ll go through a lot to continue to live because I still want more years with my daughter. Yeah. And she got bipolar, and so I have supported her for a year now. INTERVIEWER: And what kinds of things do you mostly associate with a good quality of life? CLIENT: Just being alive (chuckles) and being able to recognize what’s going on.
‘‘Surviving:’’ moving through fair toward poor QoL Some PWDs’ family members described how the PWDs’ health was continuing to decline and limit their activities. Several described the progression of the disease as the PWDs moved through the declining experiences in the ‘‘Surviving’’ mode. We heard comments describing these changes in functioning: • •
•
•
Her world has gotten smaller. So we haven’t planned much for the future. We used to like to go for a ride, say down to Duluth, and we haven’t done that. My sister’s lifestyle is extremely active but, unfortunately, she’s at the stage now where she’s finding herself….dismissing I guess is a good word, part of her life. Ah, this club, that club, this group, that group, whatever. Ah, she is letting them go one at a time, doing less…. A little bit more of her withdrawal too was….she had the oxygen and she was embarrassed…. She did not want to go out…
As these experiences established themselves as the PWDs’ new normal level of functioning, the PWDs’ comments revealed that they were also beginning to question continuing dialysis, because they found that their QoL assessments were not consistent with their values and priorities. •
Well, I guess I’ve looked at some of them and how they come into the dialysis unit, ya know whether they’re wheeled in in a wheelchair or other people have to bring them in. That I wouldn’t really want to do: [when] you can’t manipulate on your own anymore, and it means somebody has to be escorting you from the house all the way through the transportation system into the dialysis unit, so that they can take over and take blood out of you for 3 h and then somebody has to come back and go back through the chain all over again. That would be a little bit disheartening on the family, a burden on the family, that somebody has got to be around…if you’re incapacitated to do that. That means that your home life then is gonna be incapacitated to a certain extent, that somebody has to come in,
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•
either the county services, or it’s a burden on your own family to come in and take care of you. At that point in time, there is just no need to be going through this route anymore because you’re quality of life has deteriorated to a point where there is no quality there anymore, it’s just, you’re just being maintained. Well, quality of life would be the determining factor. If they’re gonna resuscitate me, I have to be able to be able to bring everything back to…function.
End stage: not meeting the QoL standard People living with dialysis and their families described how the elder’s illnesses and dialysis continued their inexorable progression. The PWDs who had reached the end stages of their kidney disease described living with extremely reduced activities and limited lives: • •
• •
I’m just tired all the time, I don’t ever feel good. But I have had two good years… So I just had it, I just have been sick long enough, tired all the time, I can hardly move from one chair to another, I can’t work in my garden, I can’t do any of these things anymore. I would say the last 6 months or so, ya know things just get tougher and tougher. It’s just hard…all those things I mentioned, I guess it all adds up. It’s cumulative.
With these realities, the discussion of whether to continue dialysis—whether to continue life—was raised by the PWDs and their family members in the interviews. Their comments then named the role of QoL in this decisionmaking. Their priorities and values became the substance of the decision-making to evaluate whether the standard of ‘‘staying alive with dialysis’’ would still be worth it. When the priorities and values could no longer be maintained due to the existing level of functioning, the basic reason to continue dialysis and continue life—quality of life—could not be sustained. They decided that it was time to die. These PWDs discontinued their dialysis and shared these comments: •
•
When we started the dialysis, they said I would feel better and I would show signs of improvement, well that didn’t happen. Also, when they put in a new heart valve, they alluded to the fact that with the new valve and some new medicine I would improve greatly, well I didn’t, so I just got tired of all these promises that didn’t materialize. Going there three times a week and [many] hours each time…and everything else, I see no value going there and I didn’t see any progress, it’s just gonna prolong my life, and I don’t want that, so…
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•
•
She would never want to be on a feeding tube as they suggested we do. Absolutely, she had signed off, and we had discussed that many, many times…Ya know, she liked a good steak now and then and her popcorn and stuff, and then if she couldn’t anymore, then that’s no good. If she is not able to communicate, um…or sleeping most of the time, just really not with us…I would say, ‘no more,’ it would be time.
Discussion The interviews with PWDs and their family members provided rich descriptions of their life experiences while living with the support of dialysis and described their evolving QoL. They reported how their adjustment to dialysis included a redefinition of QoL when dialysis began—that adjustment demanded a restructuring of daily life and a recalibration in defining life and its quality. From then on, dialysis dictated their daily schedule and supported continuing life experiences. These interviews were conducted with a cross-section of people whose health status ranged from fully functional to end stage. A portion of the interviewed PWDs described a level of functioning that reflected ‘‘Thriving’’ while living with dialysis. They functioned actively and socially; their priorities and values allowed for highly rated QoL assessments, even though their lives had been constrained by the need to live within the demands of dialysis. There were also PWDs who reported they were ‘‘getting by’’ while living with the support of dialysis: The theme of their descriptions conveyed a sense that they were ‘‘Surviving.’’ They described a loss of functional health, and their psychological and social coping efforts were challenged to sustain their values and priorities to maintain their desired QoL. This group reported their QoL as ‘‘good’’ or ‘‘fair.’’ Finally, there were also PWDs whose functioning had become extremely limited and whose lives were nearing the end. Their responses revealed that their coping efforts were having difficulty aligning their conceptualization of QoL and their priorities for living with their lived experiences; they described their QoL as poor. The PWDs’ discussions about their QoL demonstrate how their QoL assessments were an active part of their day-to-day life experience. Their responses revealed how they struggled to assess their QoL when their functioning and health circumstances changed and how they revisited their values and priorities to maintain their perceived QoL as long as they could. By their own definitions, when they got to the point where maintaining the desired QoL was no longer realistic, the standard to continue dialysis was no longer relevant: It was time to stop dialysis.
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These findings complement and extend the findings of previous qualitative efforts that investigate Response Shift as part of QoL assessment. The PWDs’ comments in the current study demonstrate their initial recalibration— redefinition—of their QoL standard to the basic insight that dialysis and its challenges were worth the life they provided; this finding parallels previous reports regarding how life-threatening experiences result in recalibration [25–27]. Further, the PWDs’ comments in the current study include overt reprioritizing and revisiting the values that define the concepts of QoL (reconceptualization) as their circumstances changed, again supporting earlier reports that noted changing concerns and goals as diseases progressed [28– 30, 33]. The findings of this study need to be considered with caution. As with all qualitative studies, the number of subjects in this study was small, and although we continued accruing subjects and interviewing until we felt that we had reached saturation, we recognize that some important aspects of Response Shift may well have been omitted from the findings due to the sample of subjects interviewed. Saturation was reached with the same number of interviews as other qualitative studies looking into various aspects of Response Shift [25–27, 29, 30]. Another limitation of the current study is based in the limited ethnic diversity in the region where the study was conducted; indeed, these findings should not be applied to other more diverse populations without caution. Further analysis of many aspects of Response Shift (e.g., age, ethnicity, comorbidity, spiritual beliefs, and support systems) needs to be addressed using quantitative methods with a larger number of subjects, since quantitative research methods allow specific hypothesis testing and description of relevant group characteristics. On the other hand, further qualitative investigations into the dimensions of Response Shift will add insights into the nuances of patients’ QoL experiences and be able to explore related decision-making processes.
Conclusions The findings of this qualitative study reveal how the theory of Response Shift is a lived reality for the PWDs and their families. Response Shift provides the framework for understanding the evolving QoL assessments of elders on dialysis. These PWDs demonstrated how people with a chronic, progressive condition move through time, striving to experience a desired quality of life. These PWDs used their values and priorities to assess whether their life experience was realizing their acknowledged standard of continuing to live with the support of dialysis. The quantitative measurement of Response Shift has been elusive and challenging [22–24], but Response Shift
is obviously a psycho-social process, as documented here using qualitative methodology. Patients make statements about how they are doing when they see their providers. In the current study, patients’ subjective appraisal of their QoL reflected their dynamic experience with the underlying diseases and dialysis.
Clinical implications Today, medical practice is increasingly patient-centered. In order to deliver patient-centered care, patient experiences and responses can be used to assist providers in guiding appropriate care decisions. This has resulted in the desire and move toward developing patient-reported outcomes (PROs) that are meaningful and easy to use. QoL measures have been identified as one of the intuitively useful PROs that can have important clinical application. However, many existing QoL instruments have proved difficult to interpret and use clinically. Qualitative examination of shifting QoL responses—as in the current study—may provide clinicians with new, patient-friendly, and clinically useful insights for improving patient QoL and health decision-making.
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Shifting responses in quality of life: People living with dialysis Barbara A. Elliott • Charles E. Gessert Pamela M. Larson • Thomas E. Russ
•
Accepted: 4 December 2013 Springer Science+Business Media Dordrecht 2013
Abstract Purpose People assess their quality of life (QoL) using internal standards, values, and priorities. With health changes, QoL responses shift to reflect current realities. This qualitative study investigated the life experience and QoL assessments of people living with dialysis (PWDs). Methods Thirty-one interviews with 20 PWDs over the age of 70 (mean time on dialysis 34 months) and 11 family members investigated experience with disease and dialysis, related life challenges, medical decision-making, and future planning. Interviews were recorded, transcribed, and analyzed for themes and hypotheses using qualitative methods and description. Results When beginning dialysis, PWDs’ reported that life on dialysis was worth living and recalibrated their QoL assessments incorporating this standard into their daily lives. Three themes emerged as the disease progressed and dialysis became more difficult: PWDs first reported thriving on dialysis and then surviving with the support of dialysis, and when QoL was reported as poor, PWDs were reconsidering whether dialysis was still worth the life it was providing. Each of these steps involved changes in health circumstances, and PWDs explained their QoL assessments at each step using differing values and priorities. These steps in reconceptualization and reprioritization
B. A. Elliott (&) University of Minnesota School of Medicine, 1035 University Drive, Duluth, MN 55812, USA e-mail: [email protected] C. E. Gessert Essentia Institute of Rural Health, Duluth, MN, USA P. M. Larson T. E. Russ Essentia Health, Duluth Clinic, Duluth, MN, USA
demonstrated PWDs’ Response Shift and eventually led to another (recalibrated) standard: Life with dialysis was no longer worth living. Conclusions Quality-of-life assessment is an on-going process for older dialysis patients. Clinicians should be alert for changes in subjective QoL statements as dialysis and underlying diseases progress. Response Shift explains these changes in assessment. Keywords Response Shift Quality of life End-stage renal disease Dialysis Qualitative research
Dialysis allows an increasing number of elders to live with chronic kidney failure [1]. Today, the highest rates of incident dialysis are among people over age 70 [2–4]. Many elders survive and even thrive while living with the support of dialysis, although a considerable portion of this population has also been described as frail [1, 5]. Elders living with end-stage renal disease (ESRD) are living with a progressive, life-ending disease. Dialysis keeps them alive, but does not extend the length of their lives greatly. Data released by the United States Renal Data Service in 2011 revealed that in 2009, dialysis patients who died after the age of 70 had been living on dialysis for an average of 2.9 years, with a median of 1.9 years [6]. The adjustment to starting dialysis engages each person’s coping process [7]. The psychological steps involved in the coping process are based on adjustments in the person living with the support of dialysis’ (PWD) perception of life, given the new circumstances. Once the primary adjustment has occurred, the PWDs’ reassessment of their quality of life continues, based on the progression of their illnesses and the burden of their treatments (including dialysis) [8]. Most PWDs achieve a relatively stable level
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of adaptation within 6 months of beginning dialysis [9–11]. Once this adjustment is accomplished, PWDs indicate that they have meaningful lives [8, 12–14] and are satisfied [8, 13–15], even though they also describe their quality of life (QoL) as constrained [8]. These observations about PWDs’ quality of life and their adjustments have been documented using quantitative measures. Over the past 15 years, the Kidney Disease Quality of Life Short Form [KDQOL-SF, 16] has been used to assess PWDs’ QoL. This instrument is an iteration of the widely endorsed SF-36TM with additional questions specific to symptoms of kidney disease. Once the initial adjustment to dialysis has been accomplished, the profiles of QoL scores for PWDs reflect physical limitations, but their mental health scores are comparable to age-matched groups [10, 15, 17]. Scholars in QoL research have observed that the QoL assessment process engages the person’s values and priorities, as well as their appraisal process [18, 19]. Over time, as a person lives with changing health circumstances, the responses to QoL assessment questions are observed to change reflecting their new circumstances. The changes in a person’s QoL assessments as they encounter and adjust to new circumstances are described as Response Shift. Adjustments result from changes in the a) internal standard for QoL measurement (recalibration); b) relative importance of the domains that define QoL (reprioritization); and c) concept of QoL and the values that weave together creating it (reconceptualization) [20, 21]. The methodological challenges of measuring these changes, and of clarifying how the shifts complicate our understandings of QoL measurements, have been the focus of multiple studies since 1999, when the concept of Response Shift was introduced [22–24]. The quantitative approaches to measuring Response Shift have been complemented with a limited number of qualitative efforts. The qualitative projects have provided narrative examples of the changes that make up the elements of Response Shift. For example, these projects have documented that recalibration accompanies changes in functional ability [25] and seems to occur as an inevitable consequence of a perceived life-threatening health experience [26, 27]. Reconceptualization and reprioritization have been documented as changes in reported goals and changes in identified areas of concern; these issues evolve throughout a serious illness, until death [28–30]. More recently, the SEIQOL-DW [31], an individual QoL tool, has been employed to identify the domains of a PWD’s life that are relevant when living with dialysis [32]. The family and health domains were the areas most commonly identified by PDWs in the SEIQOL, and these domains correlated with mental well-being despite the illnesses and dialysis [32]. Since this study was cross-sectional, it
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described the priorities assigned to these domains at the time of the project. Previous scholarship has established that reports of health-related quality of life provide a one-time indicator of the person’s health. However, as health changes, the person adapts to new circumstances, and the appraisal process involved in a QoL assessment incorporates changing standards, priorities, and values—the responses shift. These internal changes result in difficulties interpreting QoL scores both in research and in clinical settings. The scores cannot be considered reliable indicators of a person’s QoL over time, despite being a single person’s own responses to identical assessment questions. Shifting responses have been demonstrated quantitatively [33], but clarification regarding the clinical and scholarly use of QoL assessments remains challenging. Originally, this qualitative study was undertaken to improve the general understanding of elders’ lives while living with dialysis and to provide new insights into the values and decision-making of older dialysis patients and their families. The findings presented here include the PWDs’ descriptions of their QoL experiences and report the PWDs’ reasons for the changes in their QoL as their health changed.
Methodology This qualitative research study was approved by the Institutional Review Boards at Essentia Health, in Duluth, MN, and at the University of Minnesota, Minneapolis, MN. Accrual and data collection methods The study population was comprised of PWDs with ESRD over the age of 70 who had been on dialysis for at least 6 months and their close family members. Potential subjects who met these inclusion criteria were identified by the St. Mary’s Duluth Clinic (SMDC) Nephrology Department in Duluth, Minnesota. The list of potential subjects was screened by the SMDC nephrologists to eliminate individuals who, in the view of their physicians, would be likely to find participation in the study burdensome (due to cognitive impairment, debility, instability or other reasons). The Nephrology Department then mailed an information package about the study to the remaining potential subjects. The information included a brief introduction to the study and an invitation to indicate interest in learning more about the study by calling the study staff or by returning a brief form. Study staff contacted potential subjects who expressed interest in the study to assure that they met the inclusion criteria, to provide additional information and to answer
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questions about the study. An appointment was made for the research team to meet with the PWD and/or family member, either in the PWD’s home or where the PWD received care. At the beginning of each interview, the purpose of the study was explained, informed consent was obtained, and each participant completed a brief questionnaire on demographic and contact information (see Table 1). The interviews were recorded and used an open-ended, qualitative format. An Interview Guide kept the discussion focused on the seven themes: (a) PWDs’ and families’ experiences with kidney disease and dialysis, (b) how they have managed to now, (c) what has affected the course of their disease, (d) reasons to continue/forego dialysis, (e) any advance care planning to date, (f) any other topics they would like to discuss, and (g) advice to improve care of people receiving dialysis. In addition, predetermined probes (questions) for desired follow-up were prepared as part of the Interview Guide (see Table 2). Data analysis In keeping with standard qualitative research methods [34], data collection and analysis were simultaneous and continuous [35]. That is, data analysis was started as soon as the transcripts from the first three interviews were available. Subject accrual and data collection were continued until Table 1 Demographics of ESRD patients in study (N = 27) Dialysis patients N (%)
Table 2 Interview Guide The lead questions numbered 1–7 were used with each interview. The probes under each lead question were used when needed to augment the discussion 1. Tell us about your experience with kidney disease and dialysis. Probes: How has kidney disease affected your life; your mood, outlook, and attitudes; your family and friendships? Describe what has been important in your experience 2. In general, how have you managed up to now?
Race—Caucasian
27 (100 %)
Gender: male
15 (56 %)
Age
80.6 years (Range 70–100)
Marital status
Probes: Tell us about your personal outlook or values; the role of family and social relationships; religion and spirituality. What sources of support have you had? 3. What do you think has affected the course of your kidney disease?
Married
18 (66 %)
Widowed
8 (30 %)
Probes: Tell us about your role, the roles of your family, your care providers, and nature or fate in the course of your illness
Never
1 (4 %)
4. Tell us about your decision to continue dialysis/forego dialysis
Best possible
2 (11 %)
Good
10 (56 %)
Probes: How does this fit into your life (story)? What has been most important? How long have you been thinking about this? Who else has been influential in your decision?
Fair
4 (22 %)
Quality of life (N = 18)
Poor
2 (11 %)
Worst possible
0
Months receiving dialysis (mean) a
Interviews
Patient only
a
‘‘saturation’’ had been achieved in the data analysis, at which time accrual was stopped [35]. While it was initially anticipated that a total of up to 40 cases would be needed to achieve saturation, the investigators felt that saturation had been achieved after approximately 30 interviews. Data analysis began with proofing the draft transcripts against the recordings [35]. In keeping with the exploratory nature of this research, no a priori template of codes was used. Instead, the analytic process was essentially inductive in nature, with codes and categories emerging from the language and ideas of the interview participants. Data were indexed, coded, and interpreted using the steps outlined by Frankland and Bloor [36]. The proofed transcripts were read by each of the three investigators (BAE, CEG, PML) independently for a ‘‘sense of the whole.’’ During the first phase, the three investigators identified codes they attached to words, phrases, and blocks of text to organize the data in the transcripts. The investigators then met to develop a unified system of coding, integrating and reconciling their coding and terms, and to identify emerging categories (groups) of codes. The independent coding of the text and
5. Tell us about any conversations you have had about advance care planning. Probes: What about healthcare directives, living wills, and advance directives? What are your wishes now? Who have you talked with? Who is your proxy/decision-maker?
34 Pt
Family
18
Patient and family
2
2
Family only Totals
0 20
9 11
N = 27 PWD units, with 31 individual interviews
6. Is there anything else you would like to tell us about? Probes: Are there issues with family burden or family conflict; finances; religion; faith; treatment burden; symptoms; control? 7. What advice do you have for improving the support of people with CKF? Probes: Do you have any suggestions in regard to the care of the patient or the family?
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the subsequent reconciliation of coding were important steps in view of the difficulty that different readers of the same transcripts sometimes have in arriving at the same conclusions [35, 37]. Q.S.R. NUD*IST V5, a qualitative software program, was used to allow for comparisons among interviews. Finally, the data were interpreted to generate tentative themes and working hypotheses regarding the experiences of these participants.
moving toward the end of their lives. In addition, their comments revealed how they struggled to explain their QoL responses when they were living with changing circumstances. The shifts in their responses were evident as their circumstances changed. Their quality of life was described using the priorities they were assigning to their highly valued, personally important concerns. The primary adjustment
Results Careful review of interview transcripts revealed how these PWDs assessed their QoL and how their responses shifted with diminishing health. The PWDs’ comments offer insights regarding Response Shift in the setting of endstage renal disease and about the theoretical concept of Response Shift. As detailed in Table 1, the study enrolled 27 PWDs; their average age was 80 ± 6.7 years (range 70–100). Fifteen PWDs (56 %) were male. These PWDs had lived with diagnosed kidney disease for an average of 112 months and had been receiving dialysis for an average of 34 months. The PWDs were all Caucasian, and their average Charlson score was 6.42 (N = 24; range 2–12). Most of the PWDs were married or widowed, and most lived in their own homes or apartments. Of the 18 PWDs who provided quality-of-life ratings to the one-item question ‘‘How would you rate your overall quality of life? (worst possible; poor; fair; good; best possible),’’ two PWDs indicated ‘‘poor,’’ four PWDs ‘‘fair,’’ ten PWDs ‘‘good,’’ and two PWDs ‘‘best possible.’’ Over 2 years, thirty-one interviews were completed with these PWDs and family members. The sample included eleven PWDs who were actively considering the discontinuation of dialysis. These PWDs were specifically recruited so we could focus on decision-making in that phase of life. Family members of these eleven PWDs were also interviewed; in nine cases, only the PWD’s family member was interviewed as the PWD was no longer able to respond due to the disease progression toward death. Thus, as Table 1 indicates, the interviews included 20 with PWDs and eleven with family members of PWDs (seven children and four spouses). Each interview was completed independently and lasted approximately an hour. The interviews provided a rich description of these PWDs’ life experiences while living with the support of dialysis. Several themes regarding their QoL became evident. The interviewees reported how QoL changed drastically when dialysis began, and then, how they assessed quality of life when they were thriving with dialysis, when they were ‘‘getting by’’ or surviving, and when their quality of life had become so poor that they were consciously
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The participants in this project recalled easily and clearly how their lives changed when dialysis started. They described two major changes: The reason they were alive had changed (dialysis now made life possible) and the way they spent their time each day was changed (dialysis was part of their daily schedule). • •
•
•
Dialysis so completely changes your life. I mean it’s just you are tied to that dialysis schedule. It runs your life. Well, there’s one thing too you gotta remember, one thing you gotta remember in the morning…. when you roll out of bed and your feet hit the floor: it’s gonna be another day, and it wouldn’t have been…if I wouldn’t have been on dialysis. I tried to think about what I could do the rest of my life even though I am on dialysis. Well, I just made up my mind and I’m a determinate person…I’ve always accepted things…I believe what the doctors tell me and well if that’s gonna be what it is, that’s what it is and nothing that you can do about it. She loved her job! She loved working there. It was her social outlet and she loved her work and so having to retire because dialysis was gonna be 3 days a week was very, very hard on her.
Thriving: best possible QoL Several of the PWDs who were interviewed described having an excellent QoL. One man said, ‘‘I’m enjoying life as I live it, I, it’s still a good life.’’ Others went on to describe how they created this good life: •
•
•
It’s my job. Yeah, Tuesdays and Thursdays off. I got Tuesday, Thursday, Saturday and Sunday, 4 days a week when I don’t have to be there! (Chuckles) And, so when I’m not on dialysis, I just forget about it and go about my living! Actually the one thing I’m looking forward to right now is a, going to the Elk’s Club this Friday night. There’s a steak president’s night…and it will be a good party, it’ll be a good time. I work, I’m volunteering, I do that 3 days a week 1 week and 2 days the next week and that has really
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helped. It gets me out of the house and I get to see different people. The values and priorities they brought to this positive assessment of their reconceptualized QoL (‘‘Thriving’’) were also described: •
•
I guess this comes…because I’m a retired army officer and you gotta do certain things, certain, whatever it might be and that’s what you do. Well, I find that since I’ve been on dialysis, it’s been a case of whatever dialysis says, that’s what I’m gonna be doing…If they’ve set up goals, objectives, you gotta go on a diet, you gotta do this—you follow them. It was such a shock to, to have two or three beers, ya know. They really taste good when it’s cold. But then when you go in the next morning and step on that scale and the kilos are high…I still take a drink on Friday nights but…ya know, it isn’t beer.
‘‘Surviving:’’ good QoL Many PWDs were well aware that kidney disease and the burdens of dialysis take their toll on a body’s physiology. The PWDs who were interviewed included those whose health and activities were changing: •
•
•
I don’t get around as much as I did. I did start going to a….smear [card] game at the senior center. That’s just one afternoon and…there are other places to go and play cards, I’m sure, which I always have done, but I don’t do that as much anymore. They have a widow support group there I belonged to for awhile, before I was in the wheelchair, now, and I had a car then, I could drive. Now, I had to give up my car because it wasn’t safe for the wheelchair, getting in and out and everything. And I am limited somewhat because I have this neuropathy in my hands and feet. Well, what I do when I’m dialysis is I read. Because that’s the only thing I can do with one hand.
The PWDs noted that these changes also brought new insights regarding their QoL, as it moved from one of ‘‘Thriving’’ to becoming one of ‘‘Surviving.’’ At this point, PWDs did not question their basic standard regarding QoL (participating in life was dependent on continuing dialysis), but their priorities became clearer: Family support and not being a burden were increasingly important. •
And see, I don’t believe that my life just is mine…it belongs solely to me. It does not, it belongs to my family and people who depend on me and people who care, it’s not just mine to do nilly-willy with what I want…it isn’t.
•
•
Let’s put it this way, I’ll go through a lot to continue to live because I still want more years with my daughter. Yeah. And she got bipolar, and so I have supported her for a year now. INTERVIEWER: And what kinds of things do you mostly associate with a good quality of life? CLIENT: Just being alive (chuckles) and being able to recognize what’s going on.
‘‘Surviving:’’ moving through fair toward poor QoL Some PWDs’ family members described how the PWDs’ health was continuing to decline and limit their activities. Several described the progression of the disease as the PWDs moved through the declining experiences in the ‘‘Surviving’’ mode. We heard comments describing these changes in functioning: • •
•
•
Her world has gotten smaller. So we haven’t planned much for the future. We used to like to go for a ride, say down to Duluth, and we haven’t done that. My sister’s lifestyle is extremely active but, unfortunately, she’s at the stage now where she’s finding herself….dismissing I guess is a good word, part of her life. Ah, this club, that club, this group, that group, whatever. Ah, she is letting them go one at a time, doing less…. A little bit more of her withdrawal too was….she had the oxygen and she was embarrassed…. She did not want to go out…
As these experiences established themselves as the PWDs’ new normal level of functioning, the PWDs’ comments revealed that they were also beginning to question continuing dialysis, because they found that their QoL assessments were not consistent with their values and priorities. •
Well, I guess I’ve looked at some of them and how they come into the dialysis unit, ya know whether they’re wheeled in in a wheelchair or other people have to bring them in. That I wouldn’t really want to do: [when] you can’t manipulate on your own anymore, and it means somebody has to be escorting you from the house all the way through the transportation system into the dialysis unit, so that they can take over and take blood out of you for 3 h and then somebody has to come back and go back through the chain all over again. That would be a little bit disheartening on the family, a burden on the family, that somebody has got to be around…if you’re incapacitated to do that. That means that your home life then is gonna be incapacitated to a certain extent, that somebody has to come in,
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•
either the county services, or it’s a burden on your own family to come in and take care of you. At that point in time, there is just no need to be going through this route anymore because you’re quality of life has deteriorated to a point where there is no quality there anymore, it’s just, you’re just being maintained. Well, quality of life would be the determining factor. If they’re gonna resuscitate me, I have to be able to be able to bring everything back to…function.
End stage: not meeting the QoL standard People living with dialysis and their families described how the elder’s illnesses and dialysis continued their inexorable progression. The PWDs who had reached the end stages of their kidney disease described living with extremely reduced activities and limited lives: • •
• •
I’m just tired all the time, I don’t ever feel good. But I have had two good years… So I just had it, I just have been sick long enough, tired all the time, I can hardly move from one chair to another, I can’t work in my garden, I can’t do any of these things anymore. I would say the last 6 months or so, ya know things just get tougher and tougher. It’s just hard…all those things I mentioned, I guess it all adds up. It’s cumulative.
With these realities, the discussion of whether to continue dialysis—whether to continue life—was raised by the PWDs and their family members in the interviews. Their comments then named the role of QoL in this decisionmaking. Their priorities and values became the substance of the decision-making to evaluate whether the standard of ‘‘staying alive with dialysis’’ would still be worth it. When the priorities and values could no longer be maintained due to the existing level of functioning, the basic reason to continue dialysis and continue life—quality of life—could not be sustained. They decided that it was time to die. These PWDs discontinued their dialysis and shared these comments: •
•
When we started the dialysis, they said I would feel better and I would show signs of improvement, well that didn’t happen. Also, when they put in a new heart valve, they alluded to the fact that with the new valve and some new medicine I would improve greatly, well I didn’t, so I just got tired of all these promises that didn’t materialize. Going there three times a week and [many] hours each time…and everything else, I see no value going there and I didn’t see any progress, it’s just gonna prolong my life, and I don’t want that, so…
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•
•
She would never want to be on a feeding tube as they suggested we do. Absolutely, she had signed off, and we had discussed that many, many times…Ya know, she liked a good steak now and then and her popcorn and stuff, and then if she couldn’t anymore, then that’s no good. If she is not able to communicate, um…or sleeping most of the time, just really not with us…I would say, ‘no more,’ it would be time.
Discussion The interviews with PWDs and their family members provided rich descriptions of their life experiences while living with the support of dialysis and described their evolving QoL. They reported how their adjustment to dialysis included a redefinition of QoL when dialysis began—that adjustment demanded a restructuring of daily life and a recalibration in defining life and its quality. From then on, dialysis dictated their daily schedule and supported continuing life experiences. These interviews were conducted with a cross-section of people whose health status ranged from fully functional to end stage. A portion of the interviewed PWDs described a level of functioning that reflected ‘‘Thriving’’ while living with dialysis. They functioned actively and socially; their priorities and values allowed for highly rated QoL assessments, even though their lives had been constrained by the need to live within the demands of dialysis. There were also PWDs who reported they were ‘‘getting by’’ while living with the support of dialysis: The theme of their descriptions conveyed a sense that they were ‘‘Surviving.’’ They described a loss of functional health, and their psychological and social coping efforts were challenged to sustain their values and priorities to maintain their desired QoL. This group reported their QoL as ‘‘good’’ or ‘‘fair.’’ Finally, there were also PWDs whose functioning had become extremely limited and whose lives were nearing the end. Their responses revealed that their coping efforts were having difficulty aligning their conceptualization of QoL and their priorities for living with their lived experiences; they described their QoL as poor. The PWDs’ discussions about their QoL demonstrate how their QoL assessments were an active part of their day-to-day life experience. Their responses revealed how they struggled to assess their QoL when their functioning and health circumstances changed and how they revisited their values and priorities to maintain their perceived QoL as long as they could. By their own definitions, when they got to the point where maintaining the desired QoL was no longer realistic, the standard to continue dialysis was no longer relevant: It was time to stop dialysis.
Qual Life Res
These findings complement and extend the findings of previous qualitative efforts that investigate Response Shift as part of QoL assessment. The PWDs’ comments in the current study demonstrate their initial recalibration— redefinition—of their QoL standard to the basic insight that dialysis and its challenges were worth the life they provided; this finding parallels previous reports regarding how life-threatening experiences result in recalibration [25–27]. Further, the PWDs’ comments in the current study include overt reprioritizing and revisiting the values that define the concepts of QoL (reconceptualization) as their circumstances changed, again supporting earlier reports that noted changing concerns and goals as diseases progressed [28– 30, 33]. The findings of this study need to be considered with caution. As with all qualitative studies, the number of subjects in this study was small, and although we continued accruing subjects and interviewing until we felt that we had reached saturation, we recognize that some important aspects of Response Shift may well have been omitted from the findings due to the sample of subjects interviewed. Saturation was reached with the same number of interviews as other qualitative studies looking into various aspects of Response Shift [25–27, 29, 30]. Another limitation of the current study is based in the limited ethnic diversity in the region where the study was conducted; indeed, these findings should not be applied to other more diverse populations without caution. Further analysis of many aspects of Response Shift (e.g., age, ethnicity, comorbidity, spiritual beliefs, and support systems) needs to be addressed using quantitative methods with a larger number of subjects, since quantitative research methods allow specific hypothesis testing and description of relevant group characteristics. On the other hand, further qualitative investigations into the dimensions of Response Shift will add insights into the nuances of patients’ QoL experiences and be able to explore related decision-making processes.
Conclusions The findings of this qualitative study reveal how the theory of Response Shift is a lived reality for the PWDs and their families. Response Shift provides the framework for understanding the evolving QoL assessments of elders on dialysis. These PWDs demonstrated how people with a chronic, progressive condition move through time, striving to experience a desired quality of life. These PWDs used their values and priorities to assess whether their life experience was realizing their acknowledged standard of continuing to live with the support of dialysis. The quantitative measurement of Response Shift has been elusive and challenging [22–24], but Response Shift
is obviously a psycho-social process, as documented here using qualitative methodology. Patients make statements about how they are doing when they see their providers. In the current study, patients’ subjective appraisal of their QoL reflected their dynamic experience with the underlying diseases and dialysis.
Clinical implications Today, medical practice is increasingly patient-centered. In order to deliver patient-centered care, patient experiences and responses can be used to assist providers in guiding appropriate care decisions. This has resulted in the desire and move toward developing patient-reported outcomes (PROs) that are meaningful and easy to use. QoL measures have been identified as one of the intuitively useful PROs that can have important clinical application. However, many existing QoL instruments have proved difficult to interpret and use clinically. Qualitative examination of shifting QoL responses—as in the current study—may provide clinicians with new, patient-friendly, and clinically useful insights for improving patient QoL and health decision-making.
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