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Title: Psychosocial distress in older patients with advanced chronic kidney disease
Author: Alston, Helen
ISNI:       0000 0004 7661 1510
Awarding Body: UCL (University College London)
Current Institution: University College London (University of London)
Date of Award: 2018
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Background: CKD disproportionately affects older patients, and survival in older renal patients is known to be poor. Older renal patients also report high symptom burden and poor quality of life. Distress has been described as "the negative emotional experience of the individual" (National Comprehensive Cancer Network, 2010). It is a deliberately broad term, recognising that the causes of distress can be manifold. Roth et al (1998) developed a simple tool, the Distress Thermometer (DT), to identify distress associated with unmet need in cancer patients. The aim was to enable staff, who may often concentrate solely on physical health issues, to consider and discuss with patients their psychological and social needs. It has been used in many diverse settings, however it has not yet been validated for use in renal patients. Objective of this thesis: To explore the phenomenon of distress in renal patients. Study 1: We compared the Distress Thermometer to four other screening tools in frequent use in renal patients: the Hospital Anxiety and Depression Scale (HADS), the Beck Depression Inventory II (BDI-II), the Memorial Symptom Assessment Scale (MSAS-SF), and the SF-36 quality of life assessment tool. Receiver Operator Characteristic analysis was used to compare the DT with the HADS and BDI-II, and sensitivity and specificity were calculated. We found high levels of agreement between the Distress Thermometer and the HADS and BDI-II depression screening tools (AUC 0.76 and 0.87 respectively), correlation between high DT scores and high symptom burden on the MSAS-SF, and an inverse correlation between all subscales of the SF-36, in particular the Energy and Emotional Wellbeing subscales, suggesting that distress worsens with worsening quality of life. Median time to complete the DT was 4 minutes, and only 1/285 participants found it objectionable. Study 2: We compared DT scores of patients on haemodialysis with DT scores of patients with CKD4/5. Haemodialysis patients had significantly higher DT scores than CKD4/5 patients, even following adjustment for age, gender and comorbidities (median DT score 4 for haemodialysis patients and 2 for CKD4/5 patients, p < 0.001). Younger age, female gender and previous diagnosis of depression were also associated with higher levels of distress. Study 3: We obtained records for 316 CKD4/5 patients aged < 70 with ≥ 3 DTs and KPSs in their patient record. 23 started haemodialysis during the study period. Linear regression was used to analyse DT score, KPS and other factors of interest at baseline. Multi-level regression was used to analyse changes in DT and KPS score over time. Visual Graphical Analysis (VGA) was used to assess the trajectories of patients who started dialysis in the study period. For each 10% loss of functional performance on the KPS, DT score fell by 0.47 (p < 0.001). The relationship between change in DT scores over time and factors such as gender, eGFR and age, was not statistically significant. We identified four common trajectories of distress around the time of initiation of dialysis. For a minority of participants their DT scores were unaffected by starting dialysis. The majority however saw a rise in their DT scores around the time of start on haemodialysis. For some participants this returned to pre-dialysis distress levels within six months, but for others their distress levels remained high. Study 4: Using an interpretative phenomenology approach, we interviewed participants about their experiences of distress. Distress appeared to be a near-universal response to the transition onto dialysis, and a broad range of definitions of distress were used by our participants. In particular, delays and lack of individual care led to feelings of alienation of patients from the dialysis team. Discussion Distress is common in renal patients, and haemodialysis patients appear to experience higher levels of distress than CKD4/5 patients, even following adjustment for other factors. Time of initiation of dialysis seems to be a time of particular distress, and resources should be focused on easing this transition. Individualised care is particularly welcomed by patients. It would seem that the word 'distress' does not unambiguously refer to any one concept, experience, or phenomenon, but rather is a cluster of related terms, with meaning generated idiosyncratically by each individual. The advantage of the Distress Thermometer is that it is designed to work with whatever definition of distress each patient deploys, without challenging them on that definition.
Supervisor: Not available Sponsor: Not available
Qualification Name: Thesis (Ph.D.) Qualification Level: Doctoral
EThOS ID:  DOI: Not available