Mrs Jenny Kirby1,2, Professor Ann Bonner1,3,4,5, Dr Louise Purtell1,3
1Kidney Health Service, Royal Brisbane & Women’s Hospital, Brisbane, Australia, 2Social Work Department, Royal Brisbane & Women’s Hospital, Brisbane, Australia, 3School of Nursing, Queensland University of Technology, Brisbane, Australia, 4NHMRC Centre of Research Excellence in End of Life Care, Queensland University of Technology, Brisbane, Australia, 5NHMRC Chronic Kidney Disease Centre of Research Excellence, University of Queensland , Brisbane, Australia
Background: Aboriginal and Torres Strait Islander (A&TSI) people have a higher prevalence of chronic kidney disease (CKD) than the non-A&TSI population in Australia. Kidney Supportive Care (KSC) comprises renal, palliative care and allied health professionals for people with advanced CKD who require specialist symptom management, advanced care planning (ACP) and psychosocial support. This study assessed the characteristics of A&TSI people referred to KSC.
Methods: Using data extracted from clinical records of people referred to KSC between February 2016 and November 2018, we compared age, gender, co-morbidities (Charlson Co-morbidity Index), symptom burden (Integrated Palliative care Outcome Scale – Renal) and reasons for referral. Analysis involved comparisons between A&TSI and non-A&TSI cohorts.
Results: Of the 338 people referred to KSC, 4.1% (14) identified as A&TSI; 13 were Aboriginal (8 male, 3 female) and one was Torres Strait Islander (female). A&TSI patients were significantly younger than non-A&TSI patients (median 55.5 [range 34–84] vs. 74 [27–90]; p<0.001) and had lower Charlson Co-morbidity Index scores (5 [2–11] vs. 6 [2–14]; p<0.005). A higher proportion of A&TSI patients were currently treated with dialysis or on a dialysis pathway (71% vs. 49% for non-A&TSI; p=0.09). The most common reason for referral in both groups was for symptom management. 23% of A&TSI patients were referred for ACP, compared to 15% for non-A&TSI.
Outcomes: People are referred to KSC for symptom management, psychosocial support, complex decision making and/or need for ACP. The multidisciplinary team includes palliative medicine consultant, registrar, clinical nurse, social worker and pharmacist. Family are strongly encouraged to attend appointments. The person’s quality of life, connection to family/community, healthcare preferences and end of life wishes are explored utilising communication techniques which build trust, are culturally sensitive and use indigenous resources as appropriate.
Jenny Kirby is a Senior Social Worker in Metro North Hospital Health Service (MNHHS) Renal Department. Working within 2 MNHHS dialysis units and the Kidney Supportive Care clinic Jenny provides social work assessment and intervention with people with advanced chronic kidney disease and their families/carers. With 12 years of experience in mental health, cancer care and chronic disease Jenny provides expertise in providing person-centred psychosocial support in the areas of adjustment, quality of life, advanced care planning, end of life care, carer support, grief and bereavement.