The challenge of managing mild to moderate distress in patients with end stage renal disease: results from a multi-centre, mixed methods research study and the implications for renal service organisation (2019)

Type of publication:
Journal article

Author(s):
Damery, Sarah; Sein, Kim; *Nicholas, Johann ; Baharani, Jyoti; Combes, Gill

Citation:
BMC health services research; Dec 2019; vol. 19 (no. 1); p. 989

Abstract:
BACKGROUND Lower-level emotional and psychological difficulties ('distress') in patients with end stage renal disease (ESRD), can lead to reduced quality of life and poor clinical outcomes. National guidelines mandate provision of emotional and psychological support for renal patients yet little is known about the support that patients may require, or the challenges that staff experience in identifying and responding to patient distress.
METHODS Mixed methods study in renal units at four NHS Trusts in the West Midlands, UK involving cross-sectional surveys of ESRD patients and renal unit staff and semi-structured interviews with 46 purposively-sampled patients and 31 renal unit staff. Interviews explored patients' experience of distress and personal coping strategies, staff attitudes towards patient distress and perceptions of their role, responsibility and capacity.
RESULTS Patient distress was widespread (346/1040; 33.3%), and emotional problems were frequently reported. Younger patients, females, those from black and minority ethnic (BME) groups and patients recently initiating dialysis reported particular support needs. Staff recognised the value of supporting distressed patients, yet support often depended on individual staff members' skills and personal approach. Staff reported difficulties with onward referral to formal counselling and psychology services and a lack of immediate access to less formalised options. There was also a substantial training/skills gap whereby many staff reported lacking the confidence to recognise and respond to patient distress. Staff fell broadly into three groups: 'Enthusiasts' who considered identifying and responding to patient distress as integral to their role; 'Equivocators' who thought that managing distress was part of their role, but who lacked skills and confidence to do this effectively, and 'Avoiders' who did not see managing distress as part of their role and actively avoided the issue with patients.
CONCLUSIONS Embedding the value of emotional support provision into renal unit culture is the key to 'normalising' discussions about distress. Immediately accessible, informal support options should be available, and all renal staff should be offered training to proactively identify and reactively manage patient distress. Emotional support for staff is important to ensure that a greater emphasis on managing patient distress is not associated with an increased incidence of staff burnout.

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Distress in patients with end-stage renal disease: Staff perceptions of barriers to the identification of mild-moderate distress (2019)

Type of publication:
Journal article

Author(s):
Combes G.; Damery S.; Sein K.; Allen K.; *Nicholas J. ; Baharani J.

Citation:
PLoS ONE; 2019; vol. 14 (no. 11)

Abstract:
Objectives To explore staff perceptions of barriers to the identification of mild to moderate distress and the provision of emotional support in patients with end-stage renal disease.
Methods Qualitative semi-structured interviews with staff in two hospitals (n = 31), with data analysed using a hybrid approach combining thematic analysis with aspects of grounded theory.
Results Staff appeared very aware that many patients with end-stage renal disease experience distress, and most thought distressed patients should be helped as part of routine care. However, practice was variable and looking for and addressing distress was not embedded in care pathways. Interviews identified six themes: i) staff perceptions about how distress is manifested and what causes distress were variable; ii) staff perceptions of patients could lead to distress being overlooked because patients were thought to hide their distress whilst some groups were assumed to be more prone to distress than others; iii) role perceptions varied, with many staff believing it to be their role but not feeling comfortable with it, with doctors being particularly ambivalent; iv) fears held back some staff, who were concerned about what might happen when talking about distress, or who found the emotional load for themselves to be too high; v) staff felt they lacked skills, confidence and training, vi) capacity to respond may be limited, as staff perceive there to be insufficient time, with little or no specialist support services to refer patients to.
Conclusions Staff perceived significant barriers in identifying and responding to patient distress. Barriers related to skills and knowledge could be addressed through training, with training ideally targeted at staff with positive attitudes, but who currently lack skills and confidence. Barriers related to role perceptions would be harder to address. The study is relevant internationally as part of improving long-term condition pathways.

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The prevalence of mild moderate distress in patients with end-stage renal disease: Results from a patient survey using the emotion thermometers in four hospital Trusts in the West Midlands, UK (2019)

Type of publication:
Journal article

Author(s):
Damery S.; Sein K.; Combes G.; Brown C.; *Nicholas J. ; Baharani J.

Citation:
BMJ Open; May 2019; vol. 9 (no. 5), e027982

Abstract:
Objectives To assess the prevalence of mild-To-moderate distress in patients with end-stage renal disease (ESRD) and determine the association between distress and patient characteristics. Design Cross-sectional survey using emotion thermometer and distress thermometer problem list. Setting Renal units in four hospital Trusts in the West Midlands, UK. Participants Adult patients with stage 5 chronic kidney disease who were: (1) On prerenal replacement therapy. (2) On dialysis for less than 2 years. (3) On dialysis for 2 years or more (4) With a functioning transplant. Outcomes The prevalence of mild-To-moderate distress, and the incidence of distress thermometer problems and patient support needs. Results In total, 1040/3730 surveys were returned (27.9%). A third of survey respondents met the criteria for mild-To-moderate distress (n=346; 33.3%). Prevalence was highest in patients on dialysis for 2 years or more (n=109/300; 36.3%) and lowest in transplant patients (n=118/404; 29.2%). Prevalence was significantly higher in younger versus older patients (chi 2 =14.33; p=0.0008), in women versus men (chi 2 =6.63; p=0.01) and in black and minority ethnic patients versus
patients of white ethnicity (chi 2 =10.36; p=0.013). Over 40% of patients (n=141) reported needing support. More than 95% of patients reported physical problems and 91.9% reported at least one emotional problem. Conclusions Mild-To-moderate distress is common in patients with ESRD, and there may be substantial unmet support needs. Regular screening could help identify patients whose distress may otherwise remain undetected. Further research into differences in distress prevalence over time and at specific transitional points
across the renal disease pathway is needed, as is work to determine how best to support patients requiring help.

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Genetic Deletion of the Lipid Raft Protein Caveolin-1 Leads to Worsening Renal Fibrosis (2018)

Type of publication:
Journal article

Author(s):
*Chand S , Hazeldine J, Smith S, Borrows R.

Citation:
Journal of Clinical Nephrology and Renal Care 2018 Jun;4(1):037

Abstract:
Background
Renal disease is a major global public health issue. Renal interstitial fibrosis is the characteristic histopathological finding in all progressive renal disease. Caveolin-1 is the essential structural protein for lipid rafts called caveolae that are ubiquitously distributed among fibroblasts, endothelial and epithelial cells. Caveolin-1 acts as an intracellular signalling pathway chaperone in fibrotic disease. Presently, caveolin-1 expression is associated with more severe renal disease in human and previous murine studies. In non-renal fibrosis, caveolin-1 protects against fibrosis. The purpose of this study was to investigate if caveolin-1 knockout led to an increased fibrotic phenotype using the unilateral ureteric obstruction model of renal fibrosis.
Methods
Using 2 time-points of the unilateral ureteric obstruction model, wild-type and caveolin-1 knockout mouse kidneys were analysed for caveolin-1 expression and markers of fibrosis using histology, Gomori staining, real-time quantified polymerase chain reaction, Western blotting and confocal microscopy.
Results
Confocal microscopy shows caveolin-1 staining mainly in glomerulus, lining of tubules as well as the vasculature. There was increased caveolin-1 expression the longer the unilateral obstruction occurred as well as in the contralateral compensating non-obstructed kidney. Caveolin-1 knockout had less fibrosis at day 3 histologically but more at day 14 as compared to wild-type. There were significantly more F4/80 positive staining cells at day 3 and day 14 in the wild-type injured kidney as compared to the caveolin-1 knockout mouse.
Conclusion
Caveolin-1 knockout leads to a worse fibrosis upon unilateral ureteric obstruction. Caveolin-1 expression manipulation timing remains to be elucidated in reducing renal fibrosis.

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Strategies for investigating the genetics of chronic kidney disease (2018)

Type of publication:
Journal article

Author(s):
*Chand S.

Citation:
Scientific Journal of Genetics and Gene Therapy. 2018 July 4(1): 004-006.

Abstract:
This short review describes the strategies employed for investigating genetic variation in chronic kidney disease as well as highlighting potential shortfalls that should be overcome in future studies.

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Caveolin-1 in renal disease (2018)

Type of publication:
Journal article

Author(s):
*Chand S.

Citation:
Scientific Journal of Genetics and Gene Therapy. 2018 July: 007-014.

Abstract:
Caveolin-1 is the essential structural formation for lipid raft formation. It has been ascribed to several
disease processes in humans due to its ubiquitous distribution. Patients with chronic kidney disease suffer
great morbidity and mortality where manipulation of caveolin-1 could lead to new potential therapeutic
targets in this patient group. This review highlights caveolin-1 structure, signalling and provides examples
of studies of caveolin-1 single nucleotide polymorphism in chronic kidney disease.

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Diagnostic accuracy of point-of-care tests for detecting albuminuria: A systematic review and meta-analysis (2014)

Type of publication:
Journal article

Author(s):
*McTaggart M.P., Newall R.G., Hirst J.A., Bankhead C.R., Lamb E.J., Roberts N.W., Price C.P.

Citation:
Annals of Internal Medicine, April 2014, vol./is. 160/8(550-557), 0003-4819;1539-3704 (15 Apr 2014)

Abstract:
Experts recommend screening for albuminuria in patients at risk for kidney disease. Purpose: To systematically review evidence about the diagnostic accuracy of point-of-care (POC) tests for detecting albuminuria in individuals for whom guidelines recommend such detection. Data Sources: Cochrane Library, EMBASE, Medion database, MEDLINE, and Science Citation Index from 1963 through 5 December 2013; hand searches of other relevant journals; and reference lists. Study Selection: Cross-sectional studies, published in any language, that compared the accuracy of machine-read POC tests of urinary albumin-creatinine ratio with that of laboratory measurement. Data Extraction: Two independent reviewers extracted study data and assessed study quality using the QUADAS-2 (Quality Assessment of Diagnostic Accuracy Studies 2) tool. Data Synthesis: Sixteen studies (n = 3356 patients) that evaluated semiquantitative or quantitative POC tests and used random urine samples collected in primary or secondary ambulatory care settings met inclusion criteria. Pooling results from a bivariate randomeffects model gave sensitivity and specificity estimates of 76% (95% CI, 63% to 86%) and 93% (CI, 84% to 97%), respectively, for the semiquantitative test. Sensitivity and specificity estimates for the quantitative test were 96% (CI, 78% to 99%) and 98% (CI, 93% to 99%), respectively. The negative likelihood ratios for the semiquantitative and quantitative tests were 0.26 (CI, 0.16 to 0.40) and 0.04 (CI, 0.01 to 0.25), respectively. Limitation: Accuracy estimates were based on data from singlesample urine measurement, but guidelines require that diagnosis of albuminuria be based on at least 2 of 3 samples collected in a 6-month period. Conclusion: A negative semiquantitative POC test result does not rule out albuminuria, whereas quantitative POC testing meets required performance standards and can be used to rule out albuminuria.

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