Clinicians' perspectives on equity of access to dialysis and kidney transplantation for rural people in Australia: a semistructured interview study.

OBJECTIVES: People with chronic kidney disease requiring dialysis or kidney transplantation in rural areas have worse outcomes, including an increased risk of hospitalisation and mortality and encounter many barriers to accessing kidney replacement therapy. We aim to describe clinicians' perspectives of equity of access to dialysis and kidney transplantation in rural areas. DESIGN: Qualitative study with semistructured interviews. SETTING AND PARTICIPANTS: Twenty eight nephrologists, nurses and social workers from 19 centres across seven states in Australia. RESULTS: We identified five themes: the tyranny of distance (with subthemes of overwhelming burden of travel, minimising relocation distress, limited transportation options and concerns for patient safety on the roads); supporting navigation of health systems (reliance on local champions, variability of health literacy, providing flexible models of care and frustrated by gatekeepers); disrupted care (without continuity of care, scarcity of specialist services and fluctuating capacity for dialysis); pervasive financial distress (crippling out of pocket expenditure and widespread socioeconomic disadvantage) and understanding local variability (lacking availability of safe and sustainable resources for dialysis, sensitivity to local needs and dependence on social support). CONCLUSIONS: Clinicians identified geographical barriers, dislocation from homes and financial hardship to be major challenges for patients in accessing kidney replacement therapy. Strategies such as telehealth, outreach services, increased service provision and patient navigators were suggested to improve access.

Patient needs and priorities for patient navigator programmes in chronic kidney disease: a workshop report.

BACKGROUND AND OBJECTIVE: Patients with early chronic kidney disease (CKD) face challenges in accessing healthcare, including delays in diagnosis, fragmented speciality care and lack of tailored education and psychosocial support. Patient navigator programmes have the potential to improve the process of care and outcomes. The objective of this study is to describe the experiences of patients on communication, access of care and self-management and their perspectives on patient navigator programmes in early CKD. DESIGN, SETTING AND PARTICIPANTS: We convened a workshop in Australia with 19 patients with CKD (all stages including CKD Stage 1 to 5 not on dialysis, 5D (dialysis), and 5T (transplant)) and five caregivers. All of them were over 18 years and English-speaking. Transcripts from the workshop were analysed thematically. RESULTS: Four themes that captured discussions were: lost in the ambiguity of symptoms and management, battling roadblocks while accessing care, emotionally isolated after diagnosis and re-establishing lifestyle and forward planning. Five themes that focussed on patient navigator programmes were: trust and credibility, respecting patient choices and readiness to accept the programme, using accessible language to promote the programme, offering multiple ways to engage and communicate and maintaining confidentiality and privacy. Of the 17 features identified as important for a patient navigator programme, the top five were delivery of education, psychosocial support, lifestyle modification, communication and decision-making support and facilitating care. CONCLUSION: Patient navigator services can address gaps in services around health literacy, communication, psychosocial support and coordination across multiple healthcare settings. In comparison to the existing navigator programmes, and other services that are aimed at addressing these gaps, credible, accessible and flexible patient navigator programmes for patients with early CKD, that support education, decision-making, access to care and self-management designed in partnership with patients, may be more acceptable to patients.

Patients' and caregivers' perspectives on access to kidney replacement therapy in rural communities: systematic review of qualitative studies.

OBJECTIVE: Patients with chronic kidney disease (CKD) requiring kidney replacement therapy (KRT) in rural communities encounter many barriers in accessing equitable care and have worse outcomes compared with patients in urban areas. This study aims to describe the perspectives of patients and caregivers on access to KRT in rural communities to inform strategies to maximise access to quality care, and thereby reduce disadvantage, inequity and improve health outcomes. SETTING: 18 studies (n=593 participants) conducted across eight countries (Australia, Canada, the UK, New Zealand, Ghana, the USA, Tanzania and India). RESULTS: We identified five themes: uncertainty in navigating healthcare services (with subthemes of struggling to absorb information, without familiarity and exposure to options, grieving former roles and yearning for cultural safety); fearing separation from family and home (anguish of homesickness, unable to fulfil family roles and preserving sense of belonging in community); intense burden of travel and cost (poverty of time, exposure to risks and hazards, and taking a financial toll); making life-changing sacrifices; guilt and worry in receiving care (shame in taking resources from others, harbouring concerns for living donor, and coping and managing in isolation). CONCLUSION: Patients with CKD in rural areas face profound and inequitable challenges of displacement, financial burden and separation from family in accessing KRT, which can have severe consequences on their well-being and outcomes. Strategies are needed to improve access and reduce the burden of obtaining appropriate KRT in rural communities.