Challenges for Public Campaigns to Improve the Health of Persons at High Risk of Developing CKD

In recent years, a variety of large-scale efforts, including those implemented by the National Institutes of Health National Kidney Disease Education Program in 2003, were instituted to enhance the visibility of chronic kidney disease (CKD) in patients and health care providers.1, 2, 3 These efforts include advocacy for the implementation of uniform laboratory reporting of estimated glomerular filtration rates, exposure of physicians to educational materials and clinical decision aids for the care of patients with CKD, and direct outreach to patients at high risk of CKD to educate them regarding risk factors for CKD and direct them to appropriate preventive care. From their inception, it was hoped that these efforts would substantially enhance knowledge and awareness of CKD as an important health problem in both health care providers and patients. It also was hoped that efforts targeting African Americans could help narrow well-documented ethnic/racial disparities in the development, progression, and complications of CKD.4 In this issue, Waterman et al5 attempt to measure the extent to which these efforts have had an impact on attitudes and health behaviors regarding CKD in African Americans in the general public. Their findings add to a growing body of evidence showing that current campaigns have resulted in less-than-ideal improvements in attitudes regarding CKD in the near term. They also provide insight into mechanisms through which programs might gain future success, by both raising awareness of CKD in the context of other important chronic health conditions and by targeting key patient perceptions that could change patient health behaviors and ultimately lead to both a narrowing of ethnic/race disparities in CKD outcomes and improvement in overall outcomes.

Despite national efforts to raise awareness of CKD, several recent studies have shown low levels of awareness of CKD in physicians and patients. Studies of physician practice patterns indicate primary care physicians frequently do not appropriately recognize CKD or risk factors for CKD in high-risk patients.6, 7, 8 In addition, when CKD is detected, there are suboptimal rates of primary care physician adherence to current clinical practice guidelines, including suboptimal rates of referral for specialist care.6, 8 When patients receive specialist care, variation in the timing of clinical care results in poor outcomes, with disproportionately greater rates of the worst outcomes in minorities.9 Patient awareness of CKD also has been suboptimal, even in the highest risk populations. Nationally representative studies from the National Health and Nutrition Examination Survey (NHANES) have consistently shown that rates of awareness of CKD are low (<20% of patients with CKD aware) and are particularly low in ethnic/racial minorities.10, 11 Regional studies of patients at greatest risk of CKD (including ethnic/racial minority persons with a family history of CKD) confirm that these patients have surprisingly low rates of awareness of their disease or risks of future kidney disease progression.12

Although the recent short-term evidence of the suboptimal effectiveness of campaigns in raising awareness of CKD may seem discouraging, the longer term experiences of campaigns aimed at other clinically silent health problems provide hope for making gains with CKD. Since the inception of the National High Blood Pressure Education Program (instituted in 1972 by the National Heart, Lung, and Blood Institute),13 significant improvements (as much as 40% increases) in awareness of blood pressure have been observed.14 Similar significant improvements in awareness of high cholesterol levels have also been observed since the institution (in 1987) of the National Cholesterol Education Program.15 Although these improvements may be attributable in part to a variety of societal trends, it is likely that these campaigns have helped overcome inertia on the part of patients and clinicians to recognize and engage in active management of these illnesses. The long-term success of the blood pressure and cholesterol programs suggests that more time is needed to assess the ultimate impact of current programs for CKD.

However, despite dramatic historical improvements in awareness of hypertension and high cholesterol levels, improvements in treatment and control of these illnesses have not been as robust. Although awareness of hypertension and high cholesterol levels have ranged from 60% to 90%, rates of treatment and control of these illnesses have been significantly lower (range, 30% to 60%).14, 15 This suggests that even if public programs successfully enhance the awareness of CKD during the long term, significant improvements in CKD-related outcomes could still ultimately be lacking. Thus, understanding how best to translate improvements in awareness into meaningful improvements in clinical outcomes represents a key component of work to improve the health of populations at risk of CKD.

One putative mechanism though which awareness-raising campaigns might improve clinical outcomes is enhancement of patients’ perceptions of their individual susceptibility to chronic illnesses. Using strategies supported by established behavioral theory,16 campaigns seek to enhance patients’ knowledge and awareness of their risks for illness in the hopes that patients’ concerns regarding their risk of disease will motivate them to change behaviors that can contribute to the incidence and/or progression of illnesses (eg, diet, lifestyle, health care seeking, and adherence behaviors). If individual patients’ behaviors can be changed, it is expected that clinical outcomes can be improved. Evidence shows that patients with greater perceptions of risk associated with chronic illnesses are more likely to change their lifestyle habits (eg, smoking) associated with poor outcomes.17 In addition, persons perceiving chronic illness as a “serious” health concern have greater rates of adherence to recommended therapies.18, 19 However, research also shows that patients can underestimate the long-term health consequences associated with their chronic illnesses.20 There also may be substantial ethnic/racial differences in perceptions of susceptibility to disease or harm from treatment. For example, African Americans may consider themselves to be at less risk of experiencing the consequences of dementia or cancer, but they may also consider themselves to be at greater risk of harm by participation in research and they may rely more frequently on home or natural remedies to ameliorate the effects of chronic illnesses.21, 22

To date, few studies have explored how patients perceive their risks of CKD or whether perceptions affect important related health behaviors.23, 24, 25 It also is unknown whether ethnic/racial differences in perceptions of susceptibility to the long-term health consequences of CKD contribute to disparities in progression toward end-stage renal disease. In their study (funded by the National Kidney Disease Education Program), Waterman et al5 began needed work to explore relationships between perceptions of CKD and health behaviors in African Americans in the general public. They reported low levels of knowledge and extremely low levels of concern regarding CKD in African Americans. The disappointing findings regarding both knowledge and perceptions provide a challenge for programs that seek improvements and help set an agenda for work to narrow ethnic/race disparities in CKD outcomes and improve outcomes overall.

If public programs are to be successful, they will need to both educate the public about CKD and provide patient information that can enhance individual perceptions of risk. In the article by Waterman et al,5 although greater than 40% of participants had a risk factor for CKD, less than 3% registered CKD as a top health concern, with the most commonly listed major health concerns being hypertension (61%), diabetes (55%), and heart disease (45%). Some might assert that these results represent realistic levels of concern on the part of African Americans given the nearly 100-fold greater incidence of hypertension, diabetes, and heart disease compared with end-stage renal disease in African Americans and the general population.26, 27, 28, 29 However, Waterman et al5 did not investigate the basis on which participants believed certain conditions were top health problems, limiting the ability to identify reasons for differences in perceptions. For example, it is unclear whether African Americans’ lack of concern about CKD relative to other illnesses reflects the relative frequency of events associated with each illness or a lack of knowledge regarding the potential impact of kidney failure and earlier stages of CKD on length and quality of life relative to the impact of other chronic illnesses. In addition, the response rate in the study by Waterman et al5 was lacking, and participants were overwhelmingly female, limiting the generalizability of results to all African Americans. Nonetheless, participants in the study may have been more concerned than persons choosing not to participate about all health problems (including kidney disease), which would conservatively bias the study findings.

Given the high prevalence of hypertension, diabetes, and heart disease relative to CKD, it is likely that the most effective education regarding CKD will be provided in the context of ongoing education regarding these CKD risk factors. Implementing education regarding CKD in the context of these more common illnesses that are already perceived to be important health risks could provide patients with more in-depth knowledge of the interrelationship of these risk factors with CKD. Helping patients, particularly patients with these common risk factors, develop a more sophisticated level of understanding of the impact of CKD on clinical outcomes could more powerfully enhance their perceptions of susceptibility to CKD and therefore increase the probability for behavior changes that can positively impact clinical outcomes. Paired educational efforts could also broaden the potential audience receiving education about CKD while minimizing duplication of efforts by programs being executed simultaneously.

Waterman et al5 did not compare their findings of African Americans with other racial or ethnic groups. However, findings of extremely low levels of knowledge and perceived importance of CKD in African Americans, who are at substantially greater risk of poor outcomes compared to Caucasians, highlight the need to identify effective mechanisms through which education can help narrow ethnic/race disparities in outcomes. Educational efforts targeted at African Americans should emphasize the greater risk of poor outcomes for ethnic/racial minorities and place these risks in the context of illnesses already perceived to be important health conditions in ethnic/racial minorities. In addition, efforts to identify culturally effective methods of risk communication should be made to ensure that African Americans’ perceptions of risks with CKD are accurate. Finally, culture-specific motivations for behaviors (eg, diet and lifestyle) disproportionately impacting the development and progression of CKD should be explored more fully, with the goal of identifying targets for interventions to narrow disparities.

Raising awareness and education of the public regarding CKD represent important, yet intermediary, goals in the overall fight to ameliorate the effects of CKD, particularly in such high-risk groups as ethnic/racial minorities. The future success of these programs will likely hinge on their abilities to identify and target key determinants of health behaviors that directly affect important clinical outcomes. Although Waterman et al5 have laid important preliminary groundwork to guide future public programs, additional work is needed to more fully elucidate mechanisms though which programs can deliver improved clinical outcomes for all patients in an efficient and effective manner.