Explaining How Symptoms Cluster Together in Advanced Stages of Chronic Kidney Disease

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1 Explaining How Symptoms Cluster Together in Advanced Stages of Chronic Kidney Disease Hayfa Almutary PhD Candidate, BN, RN, MN Prof. Ann Bonner & Dr. Clint Douglas

2 Outline Background Study Aims Methods Results Discussion Implications for clinical practice Recommendations

3 Globally Chronic Kidney Disease CKD rapidly increasing diabetes & hypertension 500 million individuals have CKD (Mills et al., 2015) > 2.6 million people require kidney replacement therapy to live (Liyanage et al., 2015) Ranks 19th as a primary cause of death (Ojo, 2014)

4 Chronic Kidney Disease (CKD) Stage 1 Stage 2 Stage 3 Stage 4 Stage 5 90 ml/min/ Kidney damage with normal or increased GFR ml/min/ Kidney damage with mild decreased GFR 3a b ml/min/ Moderately decreased GFR ml/min/ Severely decreased GFR <15 ml/min/ Kidney failure (KHA, 2015)

5

6 Symptoms Symptom - subjective experience that indicate changes in normal functioning & affect everyday life (Lenz et al. 1997) Occur alone or with multiple other symptoms (Lenz et al. 2014)

7 Multidimensional Occurrence (presence) Distress (bother) Symptoms Severity (intensity) Frequency (timing) Each dimension contributes to total symptom burden

8 Symptom Burden in CKD 19 included studies (Almutary et al., 2013) High symptom burden Mean number of symptoms per patient ranged between 6-20 symptoms Five symptoms were common regardless of the CKD stage (fatigue, feeling drowsy, pain, pruritus & dry skin) Associated with HRQoL

9 Symptoms are mostly studied in isolation Relationships between multiple symptoms remain unclear Existence of multiple symptoms Cluster of Symptoms

10 Symptom Cluster Two or more symptoms that occur together, are stable and relatively independent of other clusters. Symptoms in a cluster may or may not share the same aetiology (Kim et al., 2005)

11 Why it is important? Provide better method of assessment as it can assist with anticipating other symptoms within the cluster Assist in prioritising assessment and management by targeting the clusters that strongly predict patients outcomes To facilitate development of effective intervention strategies (Miaskowski, Dodd, & Lee, 2004)

12 The majority of studies have explored symptom clusters in oncology Research suggests that symptom clusters independently predict functional status quality of life mortality rate

13 Symptom cluster research is emerging in CKD (Amro et al., 2014; Jablonski, 2007; Lee & jeon, 2015; Thong et al, 2009; Yu et al., 2012) However, most of these studies - examined a few physical symptoms (11 to 17) - identify symptom clusters from only one symptom dimension (mostly distress)

14 Almutary, H., Douglas, C., & Bonner, A. (2016). Multidimensional symptom clusters: An exploratory factor analysis in advanced chronic kidney disease. Journal of Advanced Nursing. DOI:10.111/jan Aim: To explore the existence of symptom clusters in advanced chronic kidney disease using a multidimensional measure of symptom burden

15 Cross-sectional design Convenience sample Inclusion criteria Methods Adults ( 18 years), Diagnosed with CKD (egfr <30 mls/min/m 2 ) Willing to participate & able to provide consent Able to communicate in Arabic Settings Three hospitals, Jeddah, Saudi Arabia

16 Measure 1. Demographic characteristics & clinical data 2. Davies et al. s comorbidity scores (7 domains, 0-7) 3. Chronic Kidney Disease- Symptom Burden Index (CKD-SBI) Modified - Dialysis Symptom Index measure 32 symptoms during the past 4 weeks measure 4 symptom dimensions occurrence (yes/no), distress, severity and frequency rated based on a 0-10 point scale A high internal consistency (Cronbach s α = 0.91) (Almutary et al., 2015)

17 Conduct EFA Factorablity of the data Rotation Extraction Number of factors Cut-off point 32 symptom for each dimension KMO 0.90 Bartlett s test of sphericity (p<0.001) Oblique rotation Weighted least squares estimation (binary data) principal axis factoring (continuous data) Eigenvalues > 1 Scree plot 5 factor solution Investigating additional factors 3 fit indices (binary data) 5 factor solution Factor loading > 0.50

18 Identification of symptom cluster Interpret pattern and structural coefficients Assess communalities Judgment about cross-loading Retain symptom on one cluster (significance loading, conceptual and clinical relevance) Retain symptom in each relevant cluster (symptom cross-loaded similarly with large factor loading score) Identify core symptoms Compare symptoms in each cluster across each dimension Evaluation of symptom cluster Face validity Clinical plausibility

19 Sample characteristics (N = 436) Variable % Age (mean, SD) ±14.86 Male 53 Married 59.6 Diabetes 31.4 Hypertension 33.7 CKD Stages & treatment modalities Stage 4 (non-dialysis) 15.8 Stage 5 (non-dialysis) 8.7 PD 9.6 HD 65.8 Comorbid conditions

20 Cluster Core Symptoms Fluid volume symptoms Neuromuscular symptoms Sexual symptoms Psychological symptoms Cough Shortness of breath Chest pain Light headedness or dizziness Difficulty concentrating Muscle soreness Numbness or tingling in feet Decreased interest in sex Difficulty becoming sexually aroused Feeling anxious Worrying Feeling sad Depression Feeling nervous Gastrointestinal symptoms Vomiting Nausea Cut-off > 0.50

21 Interconnecting symptoms A 1 B 5 Fa gue Restless legs 2 1. Fluid volume symptom cluster 2. Neuromuscular symptom cluster 3. Gastrointestinal symptom cluster 4. Sexual symptom cluster 5. Psychological symptom cluster 5 Sleep disturbance 2

22 Discussion First to identify multidimensional CKD symptom clusters Routine clinical assessment and management strategies targeted at the cluster level could have synergistic effects in reducing the burden of CKD symptoms

23 Discussion A novel finding was the presence of several interconnecting symptoms in CKD (i.e. fatigue, sleep disturbance & restless legs) Fatigue is a highly prevalent and pervasive symptom for those with CKD that is interconnected with global symptom burden Better management of symptom clusters may also reduce fatigue

24 Implications Nurses need to be aware of the possible symptom clusters in CKD If one of the core symptoms from within a symptom cluster is identified then it is likely to indicate the presence of the entire cluster Symptom - muscle soreness Cluster - neuromuscular Therefore nurses ought to anticipate other symptoms within the cluster are present and they need to intervene for the entire cluster

25 Implications Development of appropriate intervention strategies to target multiple symptoms may simplifying treatment methods reducing side effects of treatments improving patients outcomes prioritising management actions

26 Platform for Further Research Conduct a series of symptom cluster studies using standardised measures (multidimensional aspects of a wide range of symptoms) Identify different subgroups of people with CKD according to their experiences of specific symptom clusters Test the efficacy of a targeted intervention on a symptom cluster

27 Reference Almutary, H., Bonner, A., & Douglas, C. (2013). Symptom burden in chronic kidney disease: a review of recent literature. Journal of Renal Care, 39(3), Almutary, H., Bonner, A., & Douglas, C. (2015). Arabic translation, adaptation and modification of the dialysis symptom index for chronic kidney disease stages four and five. BMC Nephrology 16(1), 1-8. Amro, A., Waldum, B., Dammen, T., Miaskowski, C., & Os, I. (2014). Symptom clusters in patients on dialysis and their association with quality-of-life outcomes. Journal of Renal Care, 40(1), Dodd, M., Miaskowski, C., & Paul, S. M. (2001). Symptom clusters and their effect on the functional status of patients with cancer. Oncology Nursing Forum, 28(3), Jablonski, A. (2007). The multidimensional characteristics of symptoms reported by patients on hemodialysis. Nephrology Nursing Journal, 34(1), Kidney Health Australia. (2015). Chronic kidney disease management in general practice. Retrieved from professionals/prevent/chronickidney-disease-management-handbook Kim, H.-J., McGuire, D., Tulman, L., & Barsevick, A. (2005). Symptom clusters: concept analysis and clinical implications for cancer nursing. Cancer Nursing, 28(4), Lee, S. J., & Jeon, J. (2015). Relationship between symptom clusters and quality of life in patients at stages 2 to 4 chronic kidney disease in Korea. Applied Nursing Research: ANR, 28(4), e13-e19.

28 Reference Lenz, E. R., & Pugh, L. C. (2014). The Theory of Unpleasant Symptoms. In S. Mary & P. R. Liehr (Eds.), Middle Range Theory for Nursing (3rd ed., pp ). New York: Springer Publisher Company, LLC. Lenz, E. R., Pugh, L. C., Milligan, R. A., Gift, A., & Suppe, F. (1997). The middlerange theory of unpleasant symptoms: an update. Advances in Nursing Science, 19(3), Liyanage, T., Ninomiya, T., Jha, V., Neal, B., Patrice, H. M., Okpechi, I.,... Knight, J. (2015). Worldwide access to treatment for end-stage kidney disease: a systematic review. The Lancet, 385(9981), Miaskowski, C., Dodd, M., & Lee, K. (2004). Symptom clusters: the new frontier in symptom management research. Journal of the National Cancer Institute. Monographs, 32, Mills, K. T., Xu, Y., Zhang, W., Bundy, J. D., Chen, C.-S., Kelly, T. N.,... He, J. (2015). A systematic analysis of worldwide population-based data on the global burden of chronic kidney disease in Kidney international, 88, Ojo, A. (2014). Addressing the global burden of chronic kidney disease through clinical and translational research. Transactions of the American Clinical and Climatological Association, 125, 229. Thong, M. S. Y., van Dijk, S., Noordzij, M., Boeschoten, E. W., Krediet, R. T., Dekker, F. W., & Kaptein, A. A. (2009). Symptom clusters in incident dialysis patients: associations with clinical variables and quality of life. Nephrology, Dialysis, Transplantation: Official Publication of the European Dialysis and Transplant Association - European Renal Association, 24(1),

29 Thanks for your attention! Any questions?

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