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Research

Knowledge of and attitudes towards palliative care and hospice services among patients with advanced chronic kidney disease Sara N Davison,1 Gian S Jhangri,2 Jonathan Koffman3

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Division of Nephrology & Immunology, University of Alberta, Edmonton, Alberta, Canada 2 School of Public Health, University of Alberta, Edmonton, Alberta, Canada 3 Cicely Saunders Institute, Department of Palliative Care, Policy and Rehabilitation, King’s College London School of Medicine, London, UK Correspondence to Dr Sara N Davison, Division of Nephrology & Immunology, University of Alberta, 11–107 Clinical Sciences Building, Edmonton, Alberta, Canada T6G 2G3; [email protected] Received 29 October 2013 Revised 15 April 2014 Accepted 25 May 2014

To cite: Davison SN, Jhangri GS, Koffman J. BMJ Supportive & Palliative Care Published Online First: [ please include Day Month Year] doi:10.1136/bmjspcare-2013000610

ABSTRACT Objectives Palliative care is greatly underutilised for patients dying from advanced chronic kidney disease (CKD). This study explored CKD patients’ knowledge of, and attitudes to, palliative and hospice care. Design and intervention This was a crosssectional interview-based survey of stage 5 CKD patients. Setting Both dialysis patients and those managed without dialysis were assessed in a university-based renal programme in Alberta, Canada. Outcome measures The primary outcome was validated patient knowledge of, and attitudes, towards palliative and hospice care. Secondary analyses of associations between knowledge and potential explanatory variables such as patient demographics, living circumstances, self-assigned ethnicity, socioeconomic position and sources of knowledge were explored. Results Only 22.2% and 17.9% of 436 patients surveyed possessed a correct understanding of palliative and hospice care, respectively, and perceptions were mostly negative. Sources of knowledge of these services rarely involved healthcare professionals (3.1%–7.7%). Multivariable analysis identified that white participants were more than 12 times more likely to have accurate knowledge than non-Caucasian patients, not accounted for by socioeconomic position. Accurate knowledge was also more likely among patients who had personal experience with palliative care, or obtained their knowledge firsthand from family and friends. After palliative and hospice care were described, the vast majority of patients felt these services were valuable and should be offered to patients with advanced CKD (87.8% and 89.7%, respectively). Conclusions Based on study findings, CKD patient and family education about the benefits of palliative and hospice services is likely important in optimal use of these services.

Davison SN, et al. BMJ Supportive & Palliative Care 2014;0:1–9. doi:10.1136/bmjspcare-2013-000610

BACKGROUND Worldwide, the prevalence of non-cancer chronic diseases such as chronic kidney disease (CKD) continues to increase, driven by the tremendous burden of diabetes, hypertension and vascular disease. Despite great need, specialist palliative care is underutilised among patients dying from chronic non-malignant illnesses.1–4 Only 16%–30% of Canadians who die as a result of progressive or advanced diseases access palliative care programmes.5 Of those who do, the majority (85%) are cancer patients.2 3 Yet, 62% of all deaths result from chronic, non-malignant disease.3 Of these, only 4%–7% are referred for palliative care services. The situation in both the USA6 and the UK is comparable.7 8 Several possible explanations for the underutilisation of palliative and hospice care have been proposed and include a lack of knowledge and understanding of palliative care and related services among patients and their families, which may be socially and culturally patterned.9–11 In South Australia, a survey of 4000 households identified that 58.8% of those surveyed were able to offer a description of palliative care. However, understanding palliative care varied markedly between population subgroups. It was highest among female and younger respondents; Australian or UK/Irish born; those with degrees; those with higher incomes; and lowest among aboriginal populations.12 Although not explored in detail, a survey commissioned by the Center to Advance Palliative Care determined that the US public’s self-reported understanding of palliative care is very poor.13 A more recent cross-sectional survey among adult

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Research cancer patients in the UK identified that only a fifth of respondents could provide an accurate definition of palliative care and that this knowledge was owned disproportionately by those who resided in materially affluent areas and who self-identified as being Caucasian compared with those who lived in materially deprived areas, and identified themselves as from minority ethnic groups.9 Little is known about the knowledge and awareness of palliative care and related services among those living with chronic non-cancer illnesses such as CKD. Despite evidence that demonstrates the value of palliative care among these patients, uptake is poor4 6 14 15 resulting in poor end-of-life care.16 The purpose of this study was to examine CKD patients’ knowledge of, and attitudes to, palliative and hospice care, and to examine associations between knowledge and potential explanatory variables such as patient demographics, including ethnicity, socioeconomic status and various sources of information.

source of their knowledge. Participants were then given written and verbal descriptions of palliative and hospice care, based on WHO definitions.17 Using these descriptions, they were asked to share their views on the importance of offering these services to patients with advanced CKD. Data analysis

Recruitment and data collection

Demographics were described as number and percentage or as a mean and SD. Descriptive statistics were used to explore the percentage of patients who believed they understood the terms ‘palliative care’ and ‘hospice care’. Differences in proportions were examined using a χ2 test. A coding strategy was developed to analyse free-text comments from the open-ended questions.18 All responses were indexed independently to identify categories. Respondents’ knowledge was deemed accurate if they were able to verbalise key concepts; for palliative care, this meant care that was focused on quality of life and symptoms. For hospice, this meant similar care but for those who were very close to the end-of-life or dying. Merely stating ‘end-of-life’ was insufficient if the notion of ‘care’ was absent in their description. For example, stating, ‘it is just a place to go to die when there is ‘nothing else to be done’’ was not considered an accurate description of hospice care. Categories of inaccurate descriptions were discussed and compared and then reduced in number by grouping them together to form themes.19 Verbatim quotes from the comments were selected to illustrate the range and diversity of views. Logistic regression univariate and multivariable analysis were used to examine associations between actual knowledge of palliative and hospice care and potential explanatory variables such as patient demographics and source of information. Multivariable models were adjusted by age. Analyses were conducted using SPSS 20 and a two-tailed p

Knowledge of and attitudes towards palliative care and hospice services among patients with advanced chronic kidney disease.

Palliative care is greatly underutilised for patients dying from advanced chronic kidney disease (CKD). This study explored CKD patients' knowledge of...
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