Quality of life of children with chronic renal failure

1. Quality of life of children with chronic renal failure Constantinos J. Stefanidis Department of Nephrology «A. & P. Kyriakou» Childrens’ Hοspital, Athens Greece.

2. Quality of life • Prior clinical interventions focused primarily on: • biochemical and • histological endpoints. Recently there has been a movement toward patient-oriented outcomes, including quality of life. By understanding its components and how it can meaningfully be measured, we might optimise the care of patients.

3. Quality of life The first three decades of the ESRD programs were devoted to extending patient survival. Since the beginning of the 1990s there has been a growing interest in evaluating QOL in clinical studies. Calaminus G Int J Cancer 1999 The increasing frequency of QOL assessment in clinical trials might be the result of a patient-centred philosophy in clinical medicine which, in time, will modify the disease oriented paradigm. Osoba D. Eur J Cancer 1999

4. QoL abstracts (Medline) 16% Total 36 302 Total 5679

5. QoL- Renal failure abstracts (Medline) Total 871 Total 131 15% 2% of all QoL abstracts

6. Quality of life (QOL) generally refers to: A multitude of subjective experiences important to people's lives. Quality of life • The extent to which one's needs are satisfied, • in the context of: • physical, • psychological, • social and environmental conditions Morales AJ et al Semin Reprod Endocrinol 1996

7. Quality of life Physical status Functional abilities Psychological status Social interactions

8. QoL in chronically ill patients The proper means of measuring QOL in chronically ill patients is unclear. Different measures may assess varied aspects of patients' experience and they may be interrelated Quality of life and perception of the effects of illness are not necessarily associated with functional ability in HD patients. Kimmel PL et al J Am Soc Nephrol 1995

9. Quality of life • When it comes to saying in what happiness consist the account given by the generality of mankind differs by that of the wise. • The former take it to be something obvious like pleasure and often he changes his opinion so when he falls ill he says that is health and when he is poor he believes that is money. • Aristotle

10. Quality of life and health status QOL and health status are distinct constructs. When rating QOL, patients give greater emphasis to mental health than to physical functioning. This pattern is reversed for appraisals of health status, for which physical functioning is more important than mental health. QOL and health status are distinct constructs Smith KW et al Qual Life Res 1999

11. Quality of life of children with ESRD End stage renal disease (ESRD) places many restrictions on children which has a negative impact on their QOL. Among replacement therapies, transplantation appears to give the best QOL for large groups of patients. Szabo E Arch Intern Med 1997

12. Chronic renal failure HD Paediatricians (early referral) CRI Tx PD

13. Quality of life and Tx 57 patients transplanted at the age < than 18 years old >10 years of graft function 91% rated their health as good to excellent 91% were satisfied with their performance at work or school 89% were satisfied with life in general 32% are dissatisfied with body appearance Major concerns are short stature Major suggestions include education/support groups Morel P et al Transplantation 1991

14. QoL Early referral and choice of Rx In patients not yet on dialysis, QOL deteriorates as the glomerular filtration rate decreases. The later the patient is referred to a nephrologist, the worse the QOL. Valderrabano F. Nephrol Dial Transplant 2000 Choice of treatment is an important variable influencing QOL. once the freedom of choice of treatment is gone from the patients undergoing peritoneal dialysis (PD) their psychological QOL deteriorates. Szabo E Arch Intern Med 1997

15. Quality of life and PD PD has certain medical advantages, particularly the maintenance of residual renal function that contributes to solute and fluid removal. Gokal R et al Nephrol Dial Transplant 1999 PD has potential advantages early in the course of renal replacement treatment. However the QOL of PD patients declined steadily during the two-year study period. Bakewell AB et al Kidney Int 2002

16. QoL : Adequacy of dialysis Inadequate dialysis with low Kt/Vurea has been linked to adverse outcomes in dialysis patients. In adult patients on PD Kt/Vurea correlated better with QOL than weekly CCr. Chen YC et al Perit Dial Int 2000; In another study no significant association was found in HD and PD patients between Kt/V and QOL Morton AR et al ASAIO J 1996

17. QoL: anemia Early and effective treatment of anaemia in ESRD patients is essential in maintaining quality of life both before and after initiation of dialysis. Merkus MP et al Am J Kidney Dis 1997 Valderrabano F et al Am J Kidney Dis 2001

18. QoL: malnutrition Severe malnutrition is associated with poorer quality of life Ohri-Vachaspati P et al J Ren Nutr 1999 There is a strong association between scales measuring physical health concepts and the serum albumin level. Mingardi G et al Nephrol Dial Transplant 1999

19. Quality of life questionnaires The transfer of QOL questionnaires from research tools into clinical tools requires the collaboration of social scientists, health services researchers, and clinicians. QOL questionnaires have the potential to become a new clinical tool which could enhance the quality of care physicians are able to provide for their patients with CRI. Wagner AK Qual Life Res 1995

20. QoL and interdisciplinary collaboration Appropriate interdisciplinary collaboration and support of adult patients on hemodialysis had a positive impact on the perception of their health status Using QOL results can also increase to enhance interdisciplinary collaboration and increase patient satisfaction with care. Callahan MB et al Nephrol News Issues 1999

21. Team working improves patient care and enhances the quality of the working life.

22. Quality Improvement and QOL Appropriate organization Quality reassurance QOL Evaluation of the clinical outcome Modify strategies

23. QoL and quality of care • The use of QOL measurement may improve the quality • of care for children with CRI through: • increasing the detection of patients' problems • guiding therapeutic management • leading to improvements in patients' QOL • and satisfaction with care. Wagner AK Qual Life Res 1995