Patients with chronic kidney disease

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1 Knowledge Expectations of Patients On Dialysis Treatment Continuing Nursing Education Mirkka Rantanen Tapio Kallio Kirsi Johansson Sanna Salanterä Heli Virtanen Helena Leino-Kilpi Patients with chronic kidney disease (CKD) are faced with demanding treatments and need to have knowledge when taking care of their health and treatments. Patient education is an important component in the management of CKD (Klang, Björvell, Sundstedt, & Clyne, 1998). Patient education with good quality is based on patients individual needs (Leino-Kilpi & Vuorenheimo, 1994), and therefore, it is important to explore knowledge expectations of patients on dialysis treatment. In this study, the knowledge expectations of patients receiving dialysis treatment and selected background variables is described. Literature Review Earlier studies do not provide a view of the knowledge expectations of patients on dialysis treatment. Mirkka Rantanen, MNSc, RDH, was a Masters of Nursing Science Student, University of Turku, Department of Nursing Science, Turku, Finland, when this article was submitted. Tapio Kallio, MNSc, RN, is a Lecturer, Satakunta Polytechnic, Myllykatu, Harjavalta, Finland. Kirsi Johansson, PhD, RN, is the Coordinator of Finnish Post-Graduate School in Nursing Science, University of Turku, Department of Nursing Science, Turku, Finland. Sanna Salanterä, PhD, RN, is Acting Professor, Clinical Nursing Science, University of Turku, Department of Nursing Science, Turku, Finland. Heli Virtanen, PhDc, MNSc, RN, is a Lecturer, University of Turku, Department of Nursing Science, Turku, Finland. Helena Leino-Kilpi, PhD, RN, is Professor and Chair, University of Turku, Department of Nursing Science and South-Western Hospital District, Turku, Finland. Disclosure Statement: The authors reported no actual or potential conflict of interest in relation to this continuing nursing education article. In order to be empowered in different situations related to dialysis care, patients need knowledge. This study describes the knowledge expectations of patients on dialysis treatment (n = 47) and selected background variables. The results indicated that patients expressed moderate knowledge expectations. Most important were the biophysiological, functional, and ethical dimensions of knowledge. The least important were the social and experiential dimensions of knowledge. Patients age, employment status, dialysis modality, and length of dialysis were positively correlated with knowledge expectations. Goal: To increase awareness about the knowledge expectations held by patients receiving dialysis treatments. Objectives: 1. Outline the areas patients expect to become knowledgeable about in relation to their diagnosis and treatment. 2. Summarize data from a study describing the knowledge expectations of patients on dialysis treatment. 3. Relate findings from a study about knowledge expectations of patients on dialysis treatment to patients in own one s practice. Studies about knowledge expectations of other chronically ill patient populations, however, show that knowledge about the disease increases patients empowerment (Galloway et al., 1997; Wiles, Pain, Buckland, & McLellan, 1998). The empowerment approach suggests that patients have the capacity to make choices and be responsible for the consequences of their actions (Curtin, Johnson, & Schatell, 2004; Feste & Anderson, 1995). In addition, it has been shown that patients can evaluate their own knowledge expectations and anticipate what knowledge they require ( Johansson, Hupli, & Salanterä, 2002). In this study, patients knowledge expectations are divided into biophysiological, functional, experiential, ethical, social, and financial dimensions (Leino-Kilpi et al., 2005; Rankinen et al., 2007). Biophysiological knowledge is knowledge about physical symptoms and treatments. Patients expect biophysiological knowledge about their disease (Trisolini, Zerhusen, Bandel, & Frederick, 2006), its prognosis (Caress, Luker, Woodcock, & Beaver, 2002; Mesters, van der Borne, De Boer, & Pruyn, 2001), physical changes (Asbring, 2001), and symptoms (Caress et al., 2002; Luker, Beaver, Leinster, & Owens, 1996; This offering for 1.5 contact hours is being provided by the American Nephrology Nurses Association (ANNA). ANNA is accredited as a provider of continuing nursing education (CNE) by the American Nurses Credentialing Center s Commission on Accreditation. ANNA is a provider approved by the California Board of Registered Nursing, provider number CEP This CNE article meets the Nephrology Nursing Certification Commission s (NNCC s) continuing nursing education requirements for certification and recertification. NEPHROLOGY NURSING JOURNAL May-June 2008 Vol. 35, No

2 Knowledge Expectations of Patients on Dialysis Treatment Templeton & Coates, 2003 ). In addition, patients expect knowledge about treatments (Caress et al., 2002), complications (Lithner & Zilling, 2000), and symptoms related to complications (Johansson et al., 2003). Patients expect functional knowledge about self-care and how it affects their health. In addition to understanding the disease and treatment, patients should be able to put their knowledge into practice, for example, dialysis treatment at home (Hall et al., 2004). In addition, patients need to know how they can prevent symptoms, what to do when symptoms get worse, and how to promote their health (Caress et al., 2002; Galloway et al., 1997; Templeton & Coates, 2003). Knowledge of how diseases affect exercise capacity and what kind of exercise is allowed is important to patients (Lithner & Zilling, 2000; Luk, 2004; Scott & Thompson, 2003). Experiential knowledge (such as who to talk to about the feelings, stress, and fears caused by disease) is also important to patients (Galloway et al., 1997; Templeton & Coates, 2003). Additionally, long-term illness may change patients self-image and selfrespect. Patients need relevant information about these changes. (Asbring, 2001.) Patients expect social knowledge about how to connect treatments with work, hobbies, and social life (Leino- Kilpi et al., 2005). Patients also expect that their families should learn about their illness, home-care, and how to participate in treatment (Beeney, Bakry, & Dunn, 1996; Polaschek, 2003; van Veenendal, Grinspun, & Adriaanse, 1996; Wiles et al., 1998). Ethical knowledge about participation in decision making, autonomy, and rights are important to patients (Leino-Kilpi & Kurittu, 1995). Financial knowledge, such as the costs of further care or treatment, costs of medication, and sickness benefits, are often complicated (Leino-Kilpi et al., 2005). It is clear that although there has been research about the knowledge expectations of patients with chronic illnesses, research about the knowledge expectations of patients on dialysis treatment is lacking. The aim of this study was to start to analyze these expectations. By knowing the expectations, it may be possible to improve the quality of care of these patients. Purpose of the Study The purpose of this descriptive study was to explore what dimensions of knowledge patients on dialysis treatment expect, and the relationship between patients expected knowledge and selected demographic variables. Research questions were: What knowledge did the patients on dialysis treatment expect? What demographic variables are associated with their expected knowledge? Methods Ethical Issues All relevant permissions and ethical approval to conduct this research were obtained from the organizations concerned. Patients were informed of the purpose of the study and about the principles of voluntary and anonymous participation. Patients who returned their questionnaires were deemed to have given voluntary consent. Participants The participants were patients receiving dialysis treatment from one hospital in one of five hospital districts in Finland. There are about 86 patients on dialysis treatment per year in this hospital. A questionnaire was given to all patients (N = 62) who were treated in this hospital during a 3-month period in The inclusion criteria were dialysis treatment or predialysis stage, capable of completing the questionnaire, and informed consent. Of the 62 patients, 47 completed the questionnaire for a response rate of 76%. The sample comprised 47 patients on peritoneal dialysis (PD), hemodialysis (HD), or in the predialysis stage, aged years (mean = 62, SD = 13.62); most (57%) were female (see Table 1). The majority (83%) of patients were retired. Most of the patients (68%) were receiving HD treatment. Data Collection Data were collected with a structured questionnaire, the Expected Knowledge of Dialysis Patient (EKDP) scale. Questionnaires were handed out in the unit, and were returned in sealed envelopes to nurses or to a mailbox placed on the units for this purpose. Patients on peritoneal dialysis or in the predialysis stage could mail their questionnaires directly to the researcher. The EKDP scale was modified from the Hospital Patient s Knowledge Expectations scale based on the idea of empowering knowledge (Leino-Kilpi et al., 2005; Rankinen et al., 2007) because no existing useful tools with these empowering contents were available. The original 42-item scale was modified by adding questions related to dialysis treatment, for example, length of dialysis. The resulting 52-item EKDP scale included six subscales. These were biophysiological (12 items, including knowledge about illness, treatment, complications), functional (12 items, including exercise needs, nutrition, body hygiene), experiential (5 items, including emotions), ethical (10 items, including participation in decisionmaking, rights), social (7 items, including families, patient unions), and financial (6 items, including financial benefits) dimensions of empowering knowledge. For example, patients were asked what knowledge they expect to receive on the biophysiological dimension (I wish to receive knowledge about symptoms related to my illness) and on ethical dimensions (I wish to receive knowledge about the rights I have in the hospital). Questions were multiple choice questions with a 4-point scale (1 = fully disagree to 4 = fully agree, 0 = not applicable). The higher the score, the more knowledge the patient expected. The internal consistency of the 250 NEPHROLOGY NURSING JOURNAL May-June 2008 Vol. 35, No. 3

3 Table 1 Characteristics of the Sample (n = 47) Variables n % Gender Female Male Age in years Under or older Basic education Six years schooling Nine years schooling Twelve years schooling 4 8 Vocational education No education Secondary/upper secondary level Polytechnic/university 6 13 Employment status Employment or student 3 7 Retired Unemployed 3 7 Sick leave 2 3 Dialysis modality Peritoneal dialysis 5 11 Hemodialysis Pre-dialysis Length of dialysis treatment in years 1 or less or more 2 5 EDKP scale was estimated by Cronbach s alpha coefficient, which was 0.90 for the total 52-item scale. Cronbach s alpha for subscales were biophysiological 0.94, functional 0.92, experiential 0.82, social 0.84, ethical 0.86, and financial The instrument was not piloted because the original instrument (HPKE scale) was previously piloted and used (Leino-Kilpi et al., 2005; Rankinen et al., 2007), and no major modification from the original instrument was made. Data Analysis For descriptive purposes, 45 of the 52 items (7 items about background variables were excluded) were formed into one mean variable, which was divided into three parts using the upper and lower quartile to represent the level of patients` knowledge expectations. The levels of knowledge expectations were classed as 1 (minor = lower quartile), 2 (moderate = the two middle quartiles), and 3 (major = upper quartile). In addition, sum variables were constructed on the six dimensions of knowledge (biophysiological, functional, experiential, ethical, social, and financial) by calculating the mean values of the corresponding items. Test normality was examined by the Kolmogorov- Smirnov test. Descriptive statistics (such as percentage, frequency, mean, and standard deviation) were considered with sample characteristics. Nonparametric statistics were used for all tests due to the small comparison groups. The effect of demographic variables (including age, gender, basic education) on patients knowledge expectations was examined by the Kruskal-Wallis test and Mann- Whitney U-test. In all tests, the level of statistical significance was set at p < 0.05 (Burns & Grove, 2005). Computations were done using the SPSS programme 10.0 software. Only results with statistical significance are reported. Results Knowledge Expectations The means of the knowledge expectations of patients on dialysis treatment varied between 2.5 and 3.2. More than half (54%) of the patients felt that their expectations of knowledge were moderate. Twenty-two percent (22%) of the patients felt that their knowledge expectations were major, and 24% felt that they were minor. Patients expected multidimensional knowledge. The highest expectations were recorded for the biophysiological (mean = 3.2), functional (mean = 3.1), and ethical (mean =3.0) dimensions of knowledge; the lowest on financial (mean = 2.8), social (mean = 2.5), and experiential (mean = 2.7) dimensions. The patients on dialysis treatment expected knowledge particularly in the prevention of complications, in the progress of the disease, and test and examinations (see Table 2). Least expected was knowledge about combining treatments and work, or how the treatments affected sexuality. NEPHROLOGY NURSING JOURNAL May-June 2008 Vol. 35, No

4 Knowledge Expectations of Patients on Dialysis Treatment Table 2 Highest and Lowest Knowledge Expectations of Patients on Dialysis Treatment (n = 47) The Highest Knowledge Expectations Scale 0 (%) 1 (%) 2 (%) 3 (%) 4 (%) Mean SD Prevention of complications Present state of disease, its process and prognosis Medication Examinations and tests Patient s responsibilities in ensuring success of a treatment Possible complications involved in treatment Effect of treatment Patient s rights in hospital Knowledge about test results Who informs family about illness and treatment The Lowest Knowledge Expectations Scale 0 (%) 1 (%) 2 (%) 3 (%) 4 (%) Mean SD Connecting illness with work, hobbies or social life How to meet the hospital priest Illness effects on sexuality Patient organizations and their work Sickness benefit Rehabilitation and related costs Illness effects on traveling Knowledge about how to take advantage of earlier experience of hospitalization Illness effect on appearance How patient documents are kept secret Note: 1 = fully disagree, 2 = disagree to some extent, 3 = agree to some extent, 4 = fully agree, 0 = not applicable. Relationship Between Knowledge Expectations And Demographic Variables Knowledge expectations concerning ethical dimensions were related to patient age; patients under 63 years (50 % of patients) had greater knowledge expectations than did older patients (p = 0.038). Particularly younger patients expected knowledge about the responsibilities of different professional groups (p = 0.046). Employment status was also correlated with patients knowledge expectations. Retired patients expected more experiential knowledge (p = 0.030), such as who to talk with about feelings concerning the illness (p = 0.022) and how to take advantage of earlier hospital experiences (p = 0.048), than did working patients. There was also a difference based on the modality of dialysis treatment. Patients on PD expected more knowledge about financial, biophysiological, and social dimensions than did patients on HD (see Table 3). They expected more knowledge about insurance (p = 0.016), social benefits (p = 0.037), different treatment modalities (p = 0.029), different treatment options (p = 0.038), and about combining treatments and work (p = 0.023). Patients knowledge expectations also correlated with the length of time on dialysis (see Table 4). Patients who had been on dialysis under 2 years expected more knowledge about social dimensions, such as the family s participation in treatment (p = 0.025), than did patients who had been on dialysis longer. They also expected more financial knowledge about medication costs (p = 0.007). Discussion The aim of this study was to describe the knowledge expectations of patients on dialysis treatment. Researchers were also interested in connections between expectations and patients demographic variables. The biophysiological, functional, and 252 NEPHROLOGY NURSING JOURNAL May-June 2008 Vol. 35, No. 3

5 Table 3 Relationship Between Dialysis Modality and Knowledge Expectations (n = 37) HD (N = 32) PD (N = 5) p Mean SD Mean SD Bio-physiological knowledge Knowledge about treatment modality Knowledge about treatment options Social knowledge Knowledge about connecting treatments and working, studying or hobby ethical dimensions of knowledge were particularly important for patients to know. The results of this study lend support to earlier findings with other patient groups (Gentz, 2000; Rankinen et al., 2007). Patients on both PD and HD expect knowledge about treatment and tests. This is not surprising in view of the nature of the dialysis treatment procedure, which includes a lot of regular tests. In addition, these patients expected knowledge about preventing complications and the process and prognosis of disease. Caress et al. (2002) share this view when researching patients with other chronic illnesses. One of the highest expectations was in the ethical dimension. Some earlier studies (Rankinen et al., 2007) Financial knowledge Knowledge about social benefits Knowledge about Social Security Table 4 Relationship Between Length of Dialysis and Knowledge Expectations (n = 37) Under 2 years More than 2 years Mean SD Mean SD p Social knowledge Knowledge about family s involvement in treatment Financial knowledge ns Knowledge about medication costs are in line with this result, while other studies, in contrast ( Johansson, Salanterä, Katajisto, & Leino-Kilpi, 2002), show that the ethical dimension is the one with the least-expected knowledge. In this study, younger patients (less than 63 years) were especially interested in rights and responsibilities during their hospital stay and how to take part in decisionmaking. From the empowerment viewpoint, patients are encouraged to participate in their own treatment (Little et al., 2004), and therefore, it is important to ensure this for younger patients too. Patients knowledge expectations were the lowest in the experiential and social dimensions. These results lend support to earlier findings with other patient groups (Rankinen et al., 2007). Retired patients, however, expected more knowledge about the experiential dimension such as who to talk with about feelings concerning their illness. Possibly patients who are still working have a broader social network and therefore do not expect experiental knowledge as much as retired patients. More conversational therapy should be given to retired patients. Patients who had been on dialysis treatment under 2 years and patients on PD expected more knowledge about financial and social dimensions. It is particularly important in the predialysis stage that patient education include knowledge about social benefits, medication costs, and rehabilitation. In addition, knowledge about connecting treatments with social life and especially combining family life with treatments were important to patients receiving dialysis treatment. Patients on PD especially expected knowledge about biophysiological dimensions. This may be explained by the fact that PD is predominantly a self-care modality; patients must perform, monitor, and administer many aspects of their own treatment. Overall, patients on PD expected more knowledge than patients on HD. Patients on PD come to the hospital only once every 4 weeks and that might explain the difference in knowledge expectations between them and patients on HD who are at the hospital more often. It is possible that patients on HD had received more knowledge previously. Conversely, 80% of patients on PD had been on dialysis 1 year or less, while only 34% of patients on HD shared the same length of time on dialysis. This may explain the difference. In addition, patients on PD were younger (mean = 53 years) than patients receiving HD treatment (mean = 64 years). Limitations There are limitations in this study due to the sample. Patients who participated in this study might be more interested in their knowledge than those who did not. There is no knowl- NEPHROLOGY NURSING JOURNAL May-June 2008 Vol. 35, No

6 Knowledge Expectations of Patients on Dialysis Treatment edge of the reasons for nonresponse. The sample for this study was drawn from one hospital in one of five hospital districts in Finland. There were 47 patients in this study, which is more than half of the patients who are treated per year in this hospital. These results may also be indicative of general knowledge expectations of patients on dialysis treatment because all hospitals in Finland comply with the same regimen. Conclusion It is clear that additional research is needed to (1) describe the received knowledge of patients on dialysis treatment, (2) compare the knowledge expectations of patients on dialysis treatment with the knowledge they receive, and (3) form and test empowering patient education interventions for patients on dialysis treatment. This study indicates that patients on dialysis treatment have multidimensional knowledge expectations. The results are valuable in planning patient education and can be used to increase the patient s input in the treatment planning phase. However, not all patients necessarily expect the same knowledge. Therefore, it is important to tailor the education individually. If there was a clearer understanding of what patients want to know, then education could be better targeted. These results can also be used in the education of health care professionals and in nursing practice. By using the EKDP scale as a tool, it is possible to discover the most important knowledge expectations of patients and to support their empowerment. References Asbring, P. (2001). Chronic illness A disruption in life: Identity-transformation among women with chronic fatigue syndrome and fibromyalgia. Journal of Advanced Nursing, 34(3), Beeney, L.J., Bakry, A.A., & Dunn, S.M. (1996). Patient psychological and information needs when the diagnosis is diabetes. 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She is also on the Advisory Board for Amgen, Genzyme, and Roche and is the recipient of unrestricted educational grants from OrthoBiotech and Roche. Holly Fadness McFarland, MSN, RN, CNN, disclosed that she is an employee of DaVita, Inc. Karen C. Robbins, MS, RN, CNN, disclosed that she is on the Speakers Bureau for Watson Pharma, Inc. 254 NEPHROLOGY NURSING JOURNAL May-June 2008 Vol. 35, No. 3

7 Polaschek, N. (2003). The experience of living on dialysis: A literature review. Nephrology Nursing Journal, 30, Rankinen, S., Salanterä, S., Heikkinen, K., Johansson, K., Kaljonen, A., Virtanen, H., et al., (2007). Expectations and received knowledge by surgical patients. International Journal of Quality in Health Care., 19, Scott, J.T., & Thompson, D.R. (2003). Assessing the information needs of the post-myocardial infarction patients: A systematic review. Patient Education and Counseling, 50, Templeton, H., & Coates, V. (2003). Informational needs of men with prostate cancer on hormonal manipulation therapy. Patient Education and Counseling, 49, Trisolini, M., Zerhusen, E., Bandel, K., & Frederick, P. (2006). Evaluation of the dialysis facility compares website tool on Medicare.gov. Dialysis & Transplantation, 35(4), van Veenendal, H., Grinspun, D.R., & Adriaanse, H.P. (1996). Education needs of stroke survivors and their family members, as perceived by themselves and by health professional. Patient Education and Counseling, 28, Wiles, R., Pain, H., Buckland, S., & McLellan, L. (1998). Providing appropriate information to patients and carergivers following a stroke. Journal of Advanced Nursing, 28, Suggested Readings Gutch, C.F., Stoner, M.H., & Corea, A.L. (1999). Review of hemodialysis for nurses and dialysis personnel (6th ed.). St. Louis: Mosby, Inc. Luongo, M. (2003). Peritoneal dialysis fact sheet. Nephrology Nursing Journal, 30, Registry of the European Renal Association European Dialysis and Transplant Association. (2004). Annual report Retrieved January 16, 2007, from era-edta-reg.org United States Renal Data System. (2006). Annual data report Retrieved January 16, 2007, from NEPHROLOGY NURSING JOURNAL May-June 2008 Vol. 35, No

8 Knowledge Expectations of Patients on Dialysis Treatment ANNJ0807 ANSWER/EVALUATION FORM Knowledge Expectations of Patients on Dialysis Treatment Mirkka Rantanen, MNSc, RDH; Tapio Kallio, MNSc, RN; Kirsi Johansson, PhD, RN; Sanna Salanterä, PhD, RN; Heli Virtanen, PhDc, MNSc, RN; Helena Leino-Kilpi, PhD, RN 1.5 Contact Hours Expires: June 30, 2010 ANNA Member Price: $15 Regular Price: $25 Posttest Instructions Select the best answer and circle the appropriate letter on the answer grid below. Complete the evaluation. Send only the answer form to the ANNA National Office; East Holly Avenue Box 56; Pitman, NJ ; or fax this form to (856) Enclose a check or money order payable to ANNA. Fees listed in payment section. If you receive a passing score of 70% or better, a certificate for the contact hours will be awarded by ANNA. Please allow 2-3 weeks for processing. You may submit multiple answer forms in one mailing, however, because of various processing procedures for each answer form, you may not receive all of your certificates returned in one mailing. Complete the Following: Name: Address: Telephone: CNN: Yes No CDN: Yes No CCHT: Yes No Payment: ANNA Member: Yes No Member # Check Enclosed American Express Visa MasterCard Total Amount Submitted: Credit Card Number: Exp. Date: Name as it Appears on the Card: Special Note Your posttest can be processed in 1 week for an additional rush charge of $5.00. Yes, I would like this posttest rush processed. I have included an additional fee of $5.00 for rush processing. Online submissions through a partnership with HDCN.com are accepted on this posttest at $20 for ANNA members and $30 for nonmembers. CNE certificates will be available immediately upon successful completion of the posttest. Note: If you wish to keep the journal intact, you may photocopy the answer sheet or access this posttest at 1. What would be different in your practice if you applied what you have learned from this activity? To increase awareness about the knowledge expectations held by patients receiving dialysis treatments. New Posttest Format Please note that this continuing education activity does not contain multiple-choice questions. We have introduced a new type of posttest that substitutes the multiple-choice questions with an open-ended question. Simply answer the open-ended question(s) directly above the evaluation portion of the Answer/Evaluation Form and return the form, with payment, to the National Office as usual. Strongly Strongly Evaluation disagree agree 2. By completing this offering, I was able to meet the stated objectives a. Outline the areas patients expect to become knowledgeable about in relation to their diagnosis and treatment. b. Summarize data from a study describing the knowledge expectations of patients on dialysis treatment. c. Relate findings from a study about knowledge expectations of patients on dialysis treatment to patients in one s own practice. 3. The content was current and relevant This was an effective method to learn this content Time required to complete reading assignment: minutes. I verify that I have completed this activity (Signature) 256 NEPHROLOGY NURSING JOURNAL May-June 2008 Vol. 35, No. 3