The effectiveness of interventions which promote self-management for people with End Stage Renal Disease undergoing haemodialysis.
Visiting Fellow, Queensland University of Technology,
Level 2, Centre for Clinical Nursing,
Royal Brisbane and Womens’ Hospital. Ph (07) 36362653. Email:
Home Haemodialysis, Renal Services,
Level 9 Ned Hanlon Building, Royal Brisbane and Women's’ Hospital. Ph (07) 3636
Nurse Educator, Renal,
Level 2, Centre for Clinical Nursing,
Royal Brisbane and Women's Hospital. Ph (07) 36362654
Clinical Nurse, Chronic Kidney Disease,
Predialysis, Renal Unit,
Level 9 Ned Hanlon Building,
Royal Brisbane and Women's Hospital.
Herston Health Sciences Library,
The University of Queensland Library,
Block 6, Level 6,
Royal Brisbane and Women's Hospital
Professor Anne Chang,
Queensland Centre for Evidence-Based Nursing & Midwifery,
Mater Health Services and Queensland University of Technology
End Stage Renal Disease (ESRD) is rapidly becoming one of the largest growth areas in chronic health globally. ESRD is described as an irreversible loss of kidney function to the point that the kidneys fail to support life. When this occurs, Renal Replacement Therapy (RRT) (dialysis or transplantation) is required. Currently 1.4 million patients are reported to be receiving RRT globally with the incidence of ESRD growing at approximately 8% annually. The growth of ESRD is reported at five times the rate of world population growth and not expected to level out in the near future. The forces behind this growth include the aging population, an increase in chronic disease burden, increasing life expectancies and increased access to RRT. In developed countries including Australia most patients with ESRD are offered RRT. Furthermore the burden of costs to meet the rising incidence and prevalence of ESRD is expected to increase substantially. In America for example, the direct cost of RRT is projected to reach $USD 28 billion by 2010. A large investment is therefore required to promote effective management and care interventions such as self care for people with ESRD (1, 2).
Home and Satellite Haemodialysis
Internationally haemodialysis in a hospital is reported as the most expensive modality with costs per person per year between USD 55,000 to 80,000 compared to home haemodialysis USD 33,000 to 50,000. It is also important to note that Australia and New Zealand have the highest proportion of patients in the world receiving home haemodialysis hence reducing some of the cost burden associated with ESRD in these countries. However worldwide there is only 0.5% of all haemodialysis patients receiving home haemodialysis compared to 1.2 million dialysis patients being treated in 20,000 haemodialysis centres (1).
Home haemodialysis (HHD) requires self-management and is attended to predominately by the patient or their support person (3). It is physiologically better as the patient is able to dialyse longer or more frequently (4), there is better psychosocial support and it offers patients more control over their lives, thus improving their quality of life (QoL) (5). Satellite haemodialysis (SHD) also involves some selfmanagement by the patients even though it is carried out in a hospital or community setting. As both HHD and SHD requires patients to be self managing, the patient, therefore recognised as the principle manager of their illness, enjoys increased autonomy over some aspects of their treatment, with less medical support provided(3).
Self Management for ERSD
Exploring self-management in ESRD is extremely important for patients as they encounter several challenges including ongoing symptoms, complex treatments and restrictions, uncertainty about life and a dependency on technology, all impacting upon their autonomy particularly after commencement of haemodialysis (2, 6). Self management is defined as “the patient's positive efforts to oversee and participate in their health care in order to optimize health, prevent complications, control symptoms, marshal medical resources, and minimize the intrusion of the disease into their preferred lifestyles.” (7) p. 386) An important issue supporting self-management interventions for people with ESRD is the concept of adherence or compliance as it has been found that 33% to 50% of people are non adherent to their treatment. Furthermore several studies (quantitative and qualitative) have indicated that health outcomes including adherence to treatment are much improved and costs reduced when patients are involved in managing their own chronic illness (2, 6).
Interventions Promoting Self-management
Self- Management Education
While it is acknowledged that education about ESRD is given to patients during short clinical interactions, generally patients are left to make their own day to day decisions, hence self-management for these people is unavoidable (6). It is reported also that to best manage the complexities of psychological and behavioural issues intrinsic to people with ESRD, ongoing collaborative care and self-management education is required (2, 8). Current patient self-management education programs aim at achieving long-lasting changes in behaviour (9–13). This intervention also improves patient adherence to their dialysis regime (including diet and fluid intake) (14–16) as unfortunately non-adherence to haemodialysis regimens can significantly impact on the patient's quality of life and overall health to the point of serious long-term consequences and mortality (4, 14, 17).
Many haemodialysis patients suffer from depression, anxiety, fear of their disease and the limitations and stress it puts on their lives (18). Reports indicate negative changes often occur in patients’ attitudes towards self-management of their haemodialysis. Patients can present as proud and autonomous in their ability to achieve self-care and then regress and stay passive in their treatment (19). In order to achieve selfmanagement of haemodialysis, the patient must take a more active role in their treatment which can be achieved through therapies that promote behavioural and lifestyle changes (12). Psychological support is currently recommended for patients undertaking self-management of their haemodialysis treatment (11). A number of different interventions are available, including behaviour modification and cognitive behavioural therapy (CBT) (11, 12). An individualised approach to such treatment is recommended (20) with patient's responding positively from non-compliance, to being very empowered and self-managing (21).
Patients with extensive social support systems have also shown improved adherence to treatment thus improving QoL and reducing risk of mortality (22, 23). For self-managing patients to obtain optimal health outcomes, ongoing social support networks are required (22). Kimmel defines social support as “the perception that an individual is a member of a complex network in which one can give and receive affection, aid, and obligation”(23) p.1605). Family members, friends, pastors, acquaintances in the workplace, and medical personnel are all recognised as providers of social support and are important for the patient's adjustment to chronic and acute illness (22–24).
There are major benefits for patients who are self-managing their haemodialysis such as improved treatment adherence (14), QoL and physical wellbeing (25). However there is no current, clear or standard approach to practice, assisting and supporting patients towards self-management of haemodialysis. This systematic review will seek to establish best practice for the promotion of self-management of haemodialysis regimens for patients with end stage renal disease.
This systematic review seeks to establish what best practice is for:
Interventions which promote self-management for patients with End Stage Renal Disease (ERSD) undergoing Haemodialysis.
More specifically, the review questions are:
- Do education interventions improve self-management for patients with end stage renal disease?
- Do psychosocial interventions such as Cognitive Behavioural Therapy, behavioural therapy or other counselling therapies and social support, improve self-management for patients with end stage renal disease?
Criteria for considering studies for this review
Types of Studies
This component of the review will consider randomised controlled trials (RCT's) that compare support interventions such educational, psychological and psychosocial supports with a control group (receiving no treatment or the other supportive treatments listed above).
In the absence of RCT's other research designs, non-randomised controlled trials and before and after studies, will be considered for inclusion in a narrative summary to enable the identification of current best evidence regarding support interventions for those with ESRD.
Types of participants
This component of the review will consider studies with:
- All adults over the age of 18 years
- Patients with end stage renal disease
- Undergoing haemodialysis
Types of interventions/Phenomena of Interest
All studies evaluating the following interventions will be considered for inclusion in the review such as:
Interventions which promote self management including:
- Education interventions.
- Psychosocial interventions such as cognitive behavioural therapy and other behavioural therapies, counselling and social support.
Types of outcome measures/anticipated outcomes
This component of the review will consider studies that include the following outcomes:
- Adherence with haemodialysis treatment,
- Depression and/or anxiety,
- Quality of life,
- Carer burnout,
- Social support
- Patient satisfaction
- Adverse events potentially attributable to the intervention or control treatment
- Cost effectiveness of home haemodialysis
Search Strategy for identification of studies
The review will consist of a search of published and unpublished literature in the English language. The following databases will be searched to identify keywords contained in the title and abstract and relevant MESH headings and descriptor terms.
Cochrane Database of Systematic Reviews in the Cochrane Library
Cochrane Central Register of Controlled (CENTRAL) in the Cochrane Library
Clinical Trial Databases
Medline (1966 to present)
PsycINFO (1966 to May 2007)
Web of Science
Reference lists of published studies and reviews will be scrutinised.
Individuals and organisations with an interest in ESRD and self-management research will be contacted to identify unpublished and ongoing studies relevant to the review
Dissertation abstracts will be searched for unpublished studies.
The search strategy will be limited to the following years 1966 to 2007.
Key search terms are shown in table 1 (see appendix 1).
Methods of review
Papers selected for retrieval will be assessed by two independent reviewers for methodological validity prior to inclusion in the review using the standardised critical appraisal instruments for the Joanna Briggs Institute System for the Unified Management, Assessment and Review of Information package (SUMARI) (Appendix 2). The studies will be categorised according to the level of evidence presented. Any disagreements that arise between the reviewers will be resolved through discussion with a third reviewer.
Data will be extracted from papers included in the review using standardised data extraction tools from the Joanna Briggs Institute System for the Unified Management, Assessment and Review of Information package (Appendix 3).
Where possible quantitative research study results will be pooled in statistical meta-analysis using Review manager software from the Cochrane Collaboration (Review manager V4.04). All results will be double entered. Heterogeneity will be assessed using the standard Chi-square and visual interpretation of the graphs. Significant heterogeneity will be assigned when the p value is less than 0.05. The type of data collected will determine the type of analytical approach used during synthesis. For example odds ratio will be used to summarise effect for dichotomous data, and weighted mean differences (for continuous data) and their 95% confidence intervals will be calculated for analysis. Where statistical pooling is not possible the findings will be presented in narrative form.
1. Cass A, Chadban S, Craig J, Howard K, McDonald S, Salkeld G, et al. The economic impact of end-stage renal disease in Australia. Melbourne: Kidney Health Australia; 2006.
2. Bodenheimer T, Lorig K, Holman H, Grumbach K. Patient self-management of chronic disease in primary care. JAMA 2002;288(19):2469-2475.
3. Piccoli GB, Mezza E, Bermond F, Mowatt G, Faggiano F. Home versus hospital or satellite unit haemodialysis for end-stage renal failure (Protocol). The Cochrane Library 2004;2004.
4. Agar JW, Mahadevan K, Knight R, Antonis M, Somerville CA. ‘Flexible’ or ‘lifestyle’ dialysis: is it the way forward? Nephrology 2005;10:525-529.
5. Manns BJ, Taub K, VanderStraeten C, Jones H, Mills C, Visser M, et al. The impact of education on chronic kidney disease patients’ plans to initiate dialysis with self-care dialysis: A randomized trial. Kidney International 2005;68(4):1777-1783.
6. Curtin RB, Mapes DL. Health Care Management Strategies of Long-Term Dialysis Survivors. Nephrology Nursing Journal 2001;28(4):385-392.
7. Costantini L. Compliance, adherence, and self-management: is a paradigm shift possible for chronic kidney disease clients? The CANNT Journal 2006;16(4):22-26.
8. Baillord RA. Home dialysis: Lessons in patient education. Patient Education and Counselling 1995;26:17-24.
9. Wingard R. Patient education and the nursing process: Meeting the patient's needs. Nephrology Nursing Journal 2005;32(2):211-214.
10. Feste C, Anderson RM. Empowerment: from philosophy to practice. Patient Education and Counselling 1995;26(1-3):139-144.
11. Tsay SL. Self-efficacy training for patients with end-stage renal disease. Journal of Advanced Nursing 2003;43(4):370-375.
12. Tsay SL, Hung LO. Empowerment of patients with end-stage renal disease—a randomized controlled trial. International Journal of Nursing Studies 2004;41(1):59-65.
13. Lev EL, Owen SV. A prospective study of adjustment to hemodialysis. ANNA Journal 1998;25(5):495-504.
14. Kutner NG. Improving compliance in dialysis patients: does anything work? Seminars in Dialysis 2001;14(5):324-327.
15. Tanner JL, Craig CB, Bartolucci AA, Allon M, Fox LM, Geiger BF, et al. The effect of a self-monitoring tool on self-efficacy, health beliefs, and adherence in patients receiving hemodialysis. Journal of Renal Nutrition 1998;8(4):203-211.
16. Durose CL, Holdsworth M, Watson V, Przygrodzka F. Knowledge of diatary restrictions and the medical consequences of non-compliance by patients on hemodialysis are not predictive of dietary compliance. Journal of the American Dietetic Association 2004;104(1):35-41.
17. White RB. Adherence to the dialysis prescription: partnering with patients for improved outcomes. Nephrology Nursing Journal 2004;31(4):432-435.
18. Thong MS, Kaptein AA, Krediet RT, Boeschoten EW, Dekker FW. Social support predicts survival in dialysis patients. Nephrology, Dialysis, Transplant 2007;22(3):845-850.
19. Kimmel PL. Psychosocial factors in dialysis patients. Kidney International 2001;59(4):1599-1613.
20. Kimmel PL, Peterson RA, Weihs KL, Simmens SJ, Alleyne S, Cruz I, et al. Psychosocial factors, behavioral compliance and survival in urban hemodialysis patients. Kidney International 1998;54:245-254.
21. Hagren B, Pettersen I-M, Severinsson E, Lutzen K, Clyne N. The haemodialysis machine as a lifeline: experiences of suffering from end-stage renal disease. Journal of Advanced Nursing 2001;34(2):196-202.
22. Feraud P, Wauters J-P. The decline of home hemodialysis: How and Why? Nephron 1999;81:249-255.
23. Sagawa M, Oka M, Chaboyer W. The utility of cognitive behavioural therapy on chronic haemodialysis patients’ fluid intake: a preliminary examination. Int J Nurs Stud 2003;40(4):367-73.
24. Moran J, Kraust M. Starting a home hemodialysis program. Seminars in Dialysis 2007;20(1):35-39.
25. Curtin RB, Mapes D, Schatell D, Burrows-Hudson S. Self-management in patients with end stage renal disease: Exploring domains and dimensions. Nephrology Nursing Journal 2005;32(4):389-395.
Search Strategy - Medline
- exp Kidney failure, chronic/
- exp Renal failure
- end stage renal disease
- chronic kidney disease
- 1 or 2 or 3 or 4 or 5
- exp Hemodialysis units, hospital/
- exp Hemodialysis, home/
- exp Renal replacement therapy/
- 7 or 8 or 9 or 10 or 11 or 12
- exp Social support/
- exp Cognitive therapy/
- exp Patient education/
- exp Counseling/
- exp diet therapy/
- quality of Life therapy
- supportive therapy
- behavio*al therapy
- psychological intervention
- 14 or 15 or 16 or 17 or 18 or 19 or 20 or 21 or 22 or 23 or 24 or 25 or 26 or 27
- exp Quality of life/
- exp Self care/
- exp Self efficacy/
- health related quality of life
- self management
- 29 or 30 or 31 or 32 or 33
- RANDOMIZED CONTROLLED TRIAL.pt.
- CONTROLLED CLINICAL TRIAL.pt.
- RANDOMIZED CONTROLLED TRIALS.sh.
- RANDOM ALLOCATION.sh.
- DOUBLE BLIND METHOD.sh.
- SINGLE BLIND METHOD.sh.
- ANIMALS/ not HUMANS/
- 41 not 42
- CLINICAL TRIAL.pt.
- exp CLINICAL TRIALS/
- (clin$ adj25 trial$).ti,ab.
- ((singl$ or doubl$ or trebl$ or tripl$) adj25 (blind$ or mask$)).ti,ab.
- RESEARCH DESIGN.sh.
- 52 not 42
- COMPARATIVE STUDY.sh.
- exp EVALUATION STUDIES/
- FOLLOW UP STUDIES.sh.
- PROSPECTIVE STUDIES.sh.
- (control$ or prospectiv$ or volunteer$).ti,ab.
- 59 not 42
- 43 or 53 or 60
- 6 and 13 and 28 and 34
- 61 and 62
The Joanna Briggs Institute Critical Appraisal of Evidence of Effectiveness
Joanna Briggs Institute Data Extraction Form (Quantitative Data)