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Patient awareness involves having general knowledge about CKD, its risk factors, complications, and an understanding of their own CKD stage and associated risks. Awareness has been found to be consistently low [22, 23]. Up to a third of participants believed that alcohol was the main cause for CKD and 2.8% and 8.6% respectively identified hypertension and diabetes as risk factors.

Additionally, participants being treated for hypertension were not more aware of the risk of CKD compared to patients who were normotensive (3.3% versus 2.7%), but those diagnosed as having diabetes did have greater awareness of the risks of CKD compared to those without diabetes (25.7%

versus 4.2%) [23]. Tuot et al. have shown that up to 90% of individuals with two or three markers of CKD were unaware of their condition. These markers included hyperkalaemia, hyperphosphataemia, uraemia, nitrogen, acidosis, albuminuria, anaemia and hypertension.

However, individuals with albuminuria had greater awareness of their disease compared to those without (P<0.01) [24].

Awareness of the relationship between CKD and other comorbidities such as CKD and diabetes is also limited. Individuals with coronary heart disease (CHD) have an increased prevalence of CKD and vice versa. The Reasons for Geographical and Racial Differences in Stroke (REGARDS) cohort study showed that among participants with both CHD and CKD, 5% were aware of their CKD compared to 2% in those without CHD. Among participants with a GFR <60ml/min/1.73m², 10%

reported having been told by a physician that they had kidney disease [25]. Similarly patients with uncontrolled hypertension or diabetes were shown to have a poor perception of the likelihood of

In patients with CKD and hypertension, knowledge of the blood pressure target is independently associated with lower systolic blood pressure [27]. However, in a study of the treatment needs of primary care patients 41% of individuals were unaware of their CKD diagnosis and up to 33%

required improved blood pressure control. Almost 10% of patients needed advice to investigate anaemia or to stop nephrotoxic drugs [28]. Thus is can be seen that patients have limited awareness about their CKD status and even in those who were aware, their blood pressure management remained inadequately controlled.

Patient awareness and treatment adherence

The association between patient awareness of CKD and adherence to therapy was examined in a study involving adults with CKD who participated in the National Health and Nutrition Examination Surveys 2003-2008. Results indicated that there was no difference in blood pressure control and ACEi/ARB use between individuals who were aware of their CKD and those that were not, adjusted odds ratio 0.91 (95%CI 0.52-1.58) and 0.75 (0.44-1.30) respectively. Also, glycaemic control was not associated with increased CKD awareness AOR 0.41 (0.14-1.18) [29]. Awareness of the condition alone does not promote behaviour change or ensure adequate management.

Education interventions to improve patient knowledge may be the key to promoting increased awareness, management and participation in self-care.

2.5.1 Patient education needs

Knowledge of patient information needs is fundamental to the development of patient education programs and services. Patient information need is defined as the ‘recognition that their knowledge is inadequate to satisfy a goal, within the context/situation that they find themselves at a specific

synonymously, however these should be differentiated. Both terms imply a knowledge deficit, however education need refers to a cognitive deficit that is objectively measured (by an external individual) and that is aimed at modifying health behaviour. Information need is a subjective/cognitive knowledge deficit recognized by the individual [31-33].

Providing information to patients gives them the opportunity to improve their understanding of CKD, self-management, decreases concerns and promotes the maintenance of a normal life [34]. In a systematic review about the education needs of patients with CKD, the topics of interest included: information – physiology, symptoms, disease progression, complications; CKD management – medical and renal replacement therapy; diagnostic tests; lifestyle and dietary management; family, social and psychosocial impact; patient experiences, support groups and service provision [34]. Ormandy et al. conducted semi-structured interviews of pre-dialysis and dialysis patients to identify their information needs. Of highest priority were information needs about how kidney disease may affect patients, how to recognise symptoms and what to expect.

Patients in full or part-time employment were most concerned with how to manage their condition, complications, side effects and the impact it will have on their lifestyle. Most participants identified information about the causes of CKD, its progression and understanding what to expect in the future as necessary information for all new patients [35, 36].

In a focus group study on patients with CKD and hypertension, six themes about blood pressure control were identified: lack of basic knowledge about blood pressure (BP); conflicting advice given by doctors; delay in diagnosis due to lack of symptoms; changes in BP management; self-management – BP monitoring; and views on the patient-health professional relationship. Increasing patient knowledge and motivation helped to address the confusion experienced by the participants [37].

These studies have shown that patients desperately need more information and education about their disease, its management and prevention. Patients want to know what future outcomes they should expect and how this will affect them, their families and social sphere. Providing patients with the necessary information has been shown to assist in managing stress, improve well-being, compliance with treatments and self-care, and reduced dependency on health care services [31, 33, 38].

2.5.2 The process of patient education

The process of patient education involves five stages. These are: 1. Assess current knowledge, learning abilities, misconceptions, attitudes and motivation; 2. Identify their learning needs and barriers; 3. Plan the education intervention with patient input including their goals, frequency, type of education, who will provide the education and how; 4. Deliver the education intervention; 5.

Evaluate the patient’s needs and the effectiveness of the program [39]. In a study by Wright-Nunes, the association between knowledge and patient satisfaction with physician communication was assessed. Perceived knowledge was associated with higher odds (2.13) and objective knowledge was associated with lower odds (0.91) of patient satisfaction with physician communication [40].

We need to be aware of what patients believe they know and what they actually know in order to tailor education to their needs.