Dialysis clinician bias regarding patient non-compliance
Most of the research regarding dialysis patient non-compliance with the treatment regimen has not taken clinician views and biases into consideration. Studies in other medical ﬁelds have noted that an innate bias among professionals often leads to differences in treatment provision.
This study assessed the views of 135 dialysis social workers, dietitians, and nurses with regard to which types of patients they believe are likely to be non-compliant and why patients engage in these behaviors. An analysis of responses sought to identify any patterns of bias.
The majority of clinicians identiﬁed patient-centered factors as being the primary cause of non-compli-ance. Commonly noted beliefs were that patients are unable to understand the importance of compliance or they are simply in denial of their illness. Demographic variables such as patient education level, income level, and the presence of obesity were all found to inﬂuence how clinicians view patients and their behaviors.
Dialysis social workers, dietitians, and nurses in this study rarely identiﬁed their personal views or clinic factors as being causative agents in patient non-compliance. Wide differences between the views of the 3 studied professions highlights the subjective nature of labeling patients as being compliant or non-compliant.
There has been an enormous amount of research that has focused on patient-centered causation for non-compliance with the dialysis treat-ment regimen. Numerous theories have been put forth in an effort to explain why patients will often engage in behaviors that are detrimental to their health and potentially life-threatening. Skipping treat-ments, cutting treatments short, not taking medications, and not following dietary/ ﬂuid restrictions have all been noted to greatly impact overall health and qual-ity of life. Studies have identiﬁ ed various intrinsic variables, such as: depression,1, 2 denial of illness,3 and substance abuse4 as being causative agents for dialysis treat-ment non-compliance. External factors, such as problems with transportation5 and limited ﬁ nances,6 have also been shown to negatively inﬂuence compliance. Though this body of research has been useful, it tends to overlook the potential role of dialysis clinician bias.
Many medical ﬁelds have noted that the subjective views of clinicians greatly inﬂuence how patients are treated.7 A study of nearly 3,000 emergency room physi-cians investigated how they prescribe opiate analgesics. They were presented with 3 hypothetical case vignettes that provided clinical information, along with demograph-ics, about patients seeking pain relief. It was noted that physicians were more likely to prescribe opiates, which are stronger reliev-ers of pain, to patients who had socially desirable characteristics such as prestigious occupations.
Another investigation of emergency room prescribing patterns noted that African Americans were less likely to receive these more potent types of medications than whites, and this ﬁnding remained consistent across various ailments.8 Similar racial and gender biases have been identiﬁ ed regarding access to cardiac procedures9, 10 and cancer treatment.11
The dialysis and renal transplant physician specialties have noted patterns of bias. A study of 278 nephrologists noted that they held numerous beliefs about patients based on race. Most of them held the view that renal transplantation improved the chance for survival much more for whites as compared to African Americans.12 Of particular interest, only 12% of those surveyed felt that physician bias was an important reason for why African Americans were less likely to be evaluated for transplantation. Another study of nephrologists using hypothetical case vignettes found that women were less likely than men to be referred for renal transplantation.13 In order to explore whether or not dialysis clinicians have similar views and beliefs, the following research was conducted.
An initial convenience sample of 28 dialysis clinicians from the social work, dietary, and nursing professions were asked to submit their views as to why patients do not always adhere to treatment regimens. Their responses were sorted into 1 of 3 categories of causation: patient-centered, systemic, or clinic/staff-centered. Systemic causes were defi ned as external factors such as a lack of insurance or problems with transportation access.
A single-page Internet site was created that asked 25 questions about dialysis patient treatment, dietary, and medication compliance. The site provided a range of answer selections to the questions that were based on data gathered from the convenience sample. For example, 1 of the questions was, “What do you believe is the primary cause for why patients do not follow their diet?” A list of 19 potential answers was provided from which to choose.
Postcards were then sent to each social worker, dietitian, and charge nurse at the 551 dialysis clinics in Georgia, South Carolina, and North Carolina. These 3 states comprise ESRD Network Six/The Southeastern Kidney Council. A total of 8% of the cards were returned by the postal service as undeliverable. Efforts were made to fi nd the correct addresses and a second round of cards was mailed. The cards asked these professionals to visit the Internet site and answer the 25 questions. They were informed that their responses were voluntary and anonymous.
Data was received from 135 clinicians including 74 social workers, 45 dietitians, and 16 charge nurses. These clinicians reported that they worked at an average of 1.9 clinics each, thus data was potentially received from nearly half of the clinics in the 3 states (1.9 × 135 = 256).
Clinicians were asked 3 questions regarding what they believed were the primary reasons for why patients do not comply with certain elements of their treatment regimens. For each question they were provided with a list of potential answers from which to select that were derived from responses given by the initial sample.
When asked what they believed was the primary reason why patients do not follow their diet, 28% of respondents stated that it's because patients are unwilling to change; 19% stated that it was because patients are unable to understand the importance of compliance; and 11% stated that it was because they are in denial of their illness. Based on percentages, social workers were 3 times more likely than dietitians to endorse the view that patients are unable to understand. Only 7% percent of respondents believed that dietary non-compliance was primarily due to monetary problems (Table I).
Table I. What do you believe is the primary reason for why patients do not follow their diet?
|They are unwilling to change||27% (20)||33% (15)||25% (4)||28% (39)|
|Unable to understand its importance||25% (19)||8% (4)||18% (3)||19% (26)|
|They are in denial of their illness||10% (8)||11% (5)||12% (2)||11% (15)|
|Lack of money or insurance||8% (6)||6% (3)||6% (1)||7% (10)|
|Don't want to take responsibility||4% (3)||6% (3)||12% (2)||5% (8)|
|Don't want to be controlled by staff||4% (3)||6% (3)||0% (0)||4% (6)|
|Cultural/ethnic differences||4% (3)||2% (1)||12% (2)||4% (6)|
|They feel helpless to make changes||4% (3)||2% (1)||0% (0)||2% (4)|
|Negative infl uence of others||4% (3)||2% (1)||0% (0)||2% (4)|
|Not enough staff time||0% (0)||0% (0)||6% (1)||.7% (1)|
When asked what they believed was the primary reason for why patients skip treatments, 25% of respondents stated that it was because they were unable to under-stand the importance of dialysis. There was a large difference between the profes-sions: 18% of social workers endorsed this view as did 28% of dietitians and 43% of nurses. The second most frequently cited answer was that patients are in denial of their illness, which was endorsed by 17% of the respondents. This also showed varia-tion between the professions, with 25% of social workers, 8% of dietitians, and 6% of nurses holding this view. Nurses were twice as likely than social workers to believe that skipping treatments was due to patients not wanting to take responsibility for their health. Only 4% of respondents cited problems with transportation as being the primary cause (Table II).
Table II. What do you believe is the primary reason for why patients skip treatments?
|Unable to understand its importance||18% (14)||28% (13)||43% (7)||25% (34)|
|They are in denial of their illness||25% (19)||8% (4)||6% (1)||17% (24)|
|Don't want to take responsibility||9% (7)||24% (11)||18% (3)||15% (21)|
|Other responsibilities to tend to||12% (9)||11% (5)||0% (0)||10% (14)|
|Other ailments make it hard to sit||9% (7)||2% (1)||0% (0)||5% (8)|
|Don't want to be controlled by staff||4% (3)||8% (4)||0% (0)||5% (7)|
|Don't care about their health||2% (2)||6% (3)||6% (1)||4% (6)|
|Transportation problems||6% (5)||2% (1)||0% (0)||4% (6)|
|Angry about having kidney failure||5% (4)||2% (1)||0% (0)||3% (5)|
|Lack of education by staff||1% (1)||0% (0)||0% (0)||.7% (1)|
When asked what they believed was the primary reason for why patients do not take their medications, 31% stated that it was due to a lack of money or insurance. Social workers were more than twice as likely as dietitians to endorse this belief. A total of 19% of all respondents endorsed the view that it was because patients are unable to understand the importance of medica-tion. Variations were noted between the professions: 2% of social workers endorsed the belief that medications were skipped because patients simply forget to take them, whereas 22% of dietitians held this belief. Only 1% of respondents cited negative side effects as the primary cause for medication non-compliance (Table III).
Table III. What do you believe is the primary reason for why patients do not take their medications?
|Lack of money or insurance||40% (30)||17% (8)||31% (5)||31% (43)|
|Unable to understand its importance||16% (12)||22% (10)||25% (4)||19% (26)|
|They are in denial of their illness||14% (11)||15% (7)||6% (1)||14% (19)|
|They forget to take them||2% (4)||22% (10)||12% (2)||11% (16)|
|Don't want to take responsibility||8% (6)||6% (3)||12% (2)||8% (12)|
|They are unwilling to change||4% (3)||6% (3)||6% (1)||5% (7)|
|Not good at following directions||2% (2)||2% (1)||0% (0)||2% (3)|
|Side effects of medications||2% (2)||0% (0)||0% (0)||1% (2)|
When the responses to these 3 main compliance questions were placed into groups and averaged together, the results were relatively similar between the 3 profes-sions, but with a few exceptions. A total of 61% of the social worker responses were in the patient-centered category, 28% in system-centered, and only .3% being clinic/staff. For dietitians, it was 71% patient, 18% system, and 0% clinic/staff. For nurses, it was 67% patient, 14% system, and .2% clinic/staff. Overall, dietitians were more likely to view non-compliance as a patient-based issue.
Clinicians were asked to select demo-graphic variables from a list regarding which patients they believed were more likely to become non-compliant. Their choices were to be made based on age, income level, educational level, and obesity status. No major differences were noted between the professions with regard to age. Approximately three-fourths believed that patients under age 40 were more likely to become non-compliant. With regard to income, 6% to 7% of social workers and nurses believed that patients with incomes over $20,000 were more likely to become noncompliant whereas 22% of dietitians held this view. Differences were noted based on educational level; 57% percent of dietitians, 68% of social workers, and 87% of nurses believed that patients with less than a high school education were more likely to become noncompliant. As for obesity status, all 3 professions cited obese patients as being more likely to become non-compliant: 60% of dietitians, 56% of nurses, and 52% of social workers held this view.
When asked what they believed was the single best method for improving over-all treatment compliance, 38% responded that patients should be encouraged to take responsibility for their health. The second-most common response, cited by 12%, was to refer them to psychiatric care. With regard to staff training, 76% of all respon-dents stated that they believe that they had enough training to deal with compli-ance issues. However, there was disparity between the professions with 87% of nurs-es holding this view, but only 77% of social workers and 66% of dietitians (Table IV).
Table IV. What do you believe is the single best thing that can be done to improve patient compliance?
|Encourage them to take responsibility||33% (25)||46% (21)||37% (6)||38% (52)|
|Refer them to psychiatric care||14% (11)||11% (5)||6% (1)||12% (17)|
|Provide more staff time||12% (9)||11% (5)||12% (2)||11% (16)|
|Provide more/better staff training||12% (9)||6% (3)||12% (2)||10% (14)|
|Remind them of consequences||6% (5)||6% (3)||18% (3)||8% (11)|
|Provide better funding/resources||6% (5)||4% (2)||0% (0)||5% (7)|
|Hire more staff||2% (4)||4% (2)||6% (1)||5% (7)|
|More time/money/resource management||6% (5)||4% (2)||0% (0)||3% (5)|
A bias against patients who are obese was identiﬁed in the results of this study. It is worth noting that dietitians were most likely to view obese patients as being at higher risk to become non-compliant. Other studies with nutritional professionals have shown that young female clinicians are more likely to have this bias.14 Similar ﬁ ndings have been noted in research conducted with a range of medical professionals.15, 16 One study of nurses found that 22% believed that obese patients are lazy, and another noted that 24% were repulsed by having to work with the obese.17 In 2006, there were 109,630 people in the United States who initiated dialysis, and they had an average body mass index (BMI) of 29.4 for females and 27.8 for males, which places them in the overweight to nearly obese category.18
Only 1% of all respondents in this study cited negative side effects as a reason for why patients do not take their medica-tions. The dialysis population has one of the largest and most complex medica-tion regimens among people with chronic illnesses. The typical dialysis patient is using 10 home medications and those with diabetes are using 13.19 As the number of medications used increases, so does the risk for adverse reactions. Reducing the daily pill regimen greatly improves compliance with medications.20, 21 It is also known that side effects substantially inﬂuence the qual-ity of life for people on dialysis and likely impairs their ability to comply with ﬂ uid intake restrictions.22 The negative impact of medications appeared to be widely over-looked by participants in this study.
Certain demographic characteristics appeared to be strongly held markers for clinicians with regard to whom they believe are most likely to become noncompliant. Large numbers of respondents cited patient education level and age to be important factors though this is not substantiated by the research literature. A meta-analysis of 23 studies found no consistent presence of non-compliance based on patient education level.23 Approximately one-third found no correlation with age.
The belief that patients are unable to understand the importance of compliance was the ﬁrst or second most common response by clinicians across all of the questions asked of them. This ﬁ nding is important because there is quite a differ-ence between not understanding and not being able to understand. If patients are unable to understand then all efforts to educate them and modify their behaviors are based on faulty assumptions. It is an ironic dichotomy that though clinicians held this view, they also believed that the best method for improving compliance was to get patients to take responsibility for their health.
A number of clinicians also held the view that the best method would be to refer them to psychiatric care. Turning non-com-pliance into a mental pathology has 3 major potential pitfalls. First, it presumes that it is a medical condition of which patients have little to no control over. There is a predilec-tion in society to label aberrant behaviors as being disease states. For example, exces-sive gambling or heightened sexual inter-est are deemed addictions and people in bad relationships are merely codependent. Second, it disregards the extensive body of research noting that non-compliance is often multifactorial. Third, by deeming it a medical condition it leads to the belief that it can somehow be “cured.”
The ﬁndings of this study denote that bias is an inherent tendency. Through training and education, many clinicians believe that non-compliance is an objec-tive determination, however it is actually arbitrary and varies from one person to the next.24, 25 Clinicians determine their individual boundaries for what constitutes compliance and non-compliance. Deeming a patient noncompliant is a subjective pro-cess wherein the goal is to apply meaning and control to behavior. Another risk that arises, whether conscious or unconscious, is that we begin applying our behavioral interpretations to individuals based on the group to which we have categorized them.26 For example, the majority of clinicians in this study believed that obese patients are more likely to become non-compliant sim-ply because of their body size. This is com-monly referred to as stereotyping and it can greatly inﬂuence the treatment, counsel, and education provided to patients.
It is important that dialysis profes-sionals be aware of bias in their personal views so as not to stereotype their patients. Clinicians have varied experiences, back-grounds, education, and sociocultural expectations and they must be wary of how these factors may inﬂuence their percep-tions of patient behavior. The ﬁ ndings of this study show that most clinicians have some degree of bias toward various patient characteristics or groups. There is also a strong tendency to believe that non-compli-ance is always due to patient-centered cau-sation; however, patients, clinicians, and external systems all affect and are affected by each other. By focusing too much on only one of these factors clinicians might overlook, or diminish, the importance of the others. Though patients are responsible for their health there are a large number of external inﬂuences acting upon them that can greatly impact their ability to be compliant.
This research was supported by a grant from the Southeastern Kidney Council/ESRD Network Six. The author would like to thank all of the clinicians who participated in this study.