Towards consumer-centred health care and health research in nephrology: understanding patient and family caregiver experiences and perspectives in chronic kidney disease

Healthcare services and health research aim to improve the physical and psychosocial well being of consumers, and to offer responsive services needed and valued by them. Research in chronic kidney disease (CKD) has predominantly focused on investigating biomedical aspects and evaluating technological or pharmacological treatment interventions to improve medical management. While research into assessing patients’ and caregivers’ quality of life, and symptom burden, is growing minimal attention has been given to gaining a broad and in-depth understanding about the experiences, psychosocial issues and needs of patients and their caregivers. These need to be considered when planning and delivering patient-centred care and health research across the whole trajectory of CKD. The studies that form the major part of this thesis explore the perspectives, needs and experiences of CKD patients and their caregivers, within a broad and multidimensional framework encompassing aspects of the nature of the health and illness experiences and consumer perspectives. In Chapter 2, to understand what is known about parental experiences of caring for a child with CKD, the relevant qualitative literature was systematically reviewed and synthesized. Three inter-related clusters were identified: intrapersonal, interpersonal and external experiences. In Chapter 3, to gain a more detailed and broader understanding of this topic, in-depth interviews were conducted with parents of 20 children with CKD and 4 major themes were identified: absorbing the clinical environment, medicalising parenting, disrupting family norms, and coping strategies and support structures. In Chapter 4, to assess the effectiveness of support interventions for caregivers of patients with CKD, a systematic review was conducted which identified only three eligible studies that assessed only the effect of educational material on caregiver knowledge, not other domains. In Chapter 5, to describe and compare the broad range and depth of experiences and perspectives from predialysis, dialysis and transplantation patients, data from patient focus groups were analysed. The 5 themes that emerged from this data were: personal meaning of CKD, managing and monitoring health, lifestyle consequences, family impact, and informal structures. In Chapter 6, the focus groups were also used to elicit research priorities and identify reasons that patients used to develop their research priorities. A patient focused research agenda was elicited for CKD and 5 reasons that patients used to develop their research priorities were identified: normalisation of life, altruism, economic efficiency, personal concerns and clinical outcomes. During the focus groups, participants repeatedly expressed frustration about the poor public profile, and lack of community-based information on CKD prevention. So in Chapter 7, to assess how Australian news media covered prevention and early detection of CKD, I analysed television and newspaper stories that referred to CKD prevention or early detection. Kidney disease in general, and particularly the prevention and early detection of CKD, received virtually no media attention. When mentioned, it was mainly in the context of transplantation and donor stories, and seldom prevention or early detection, which appears largely unnewsworthy in its current form. At best, CKD received peripheral mention as a secondary concern in diabetes and obesity news stories which focused on lifestyle solutions. In Chapter 8, to develop a checklist for explicit and comprehensive reporting of qualitative studies (in-depth interviews and focus groups), I performed a comprehensive search in relevant publications for existing checklists used to assess qualitative studies. Seventy-six items from 22 checklists were compiled into a comprehensive list. All items were grouped into three domains: 1) research team and reflexivity, 2) study design, and 3) data analysis and reporting. The overarching purpose of these studies was to gain a better understanding about the needs, experiences and perspectives of CKD patients and their caregivers. The findings describe the permanent, profound and pervasive impact of CKD on the lives of patients and caregivers across the whole illness trajectory. A more detailed and broader understanding about patient and caregiver perspectives, as presented in this thesis, can support a move towards advancing patient-centred healthcare and research in CKD

Perspectives of healthcare providers on the nutritional management of patients on haemodialysis in Australia: An interview study

Objective To describe the perspectives of healthcare providers on the nutritional management of patients on haemodialysis, which may inform strategies for improving patient-centred nutritional care. Design Face-to-face semistructured interviews were conducted until data saturation, and thematic analysis based on principles of grounded theory. Setting 21 haemodialysis centres across Australia. Participants 42 haemodialysis clinicians (nephrologists and nephrology trainees (15), nurses (12) and dietitians (15)) were purposively sampled to obtain a range of demographic characteristics and clinical experiences. Results Six themes were identified: responding to changing clinical status (individualising strategies to patient needs, prioritising acute events, adapting guidelines), integrating patient circumstances (assimilating life priorities, access and affordability), delineating specialty roles in collaborative structures (shared and cohesive care, pivotal role of dietary expertise, facilitating access to nutritional care, perpetuating conflicting advice and patient confusion, devaluing nutritional specialty), empowerment for behaviour change (enabling comprehension of complexities, building autonomy and ownership, developing self-efficacy through engagement, tailoring self-management strategies), initiating and sustaining motivation (encountering motivational hurdles, empathy for confronting life changes, fostering non-judgemental relationships, emphasising symptomatic and tangible benefits, harnessing support networks), and organisational and staffing barriers (staffing shortfalls, readdressing system inefficiencies). Conclusions Organisational support with collaborative multidisciplinary teams and individualised patient care were seen as necessary for developing positive patient-clinician relationships, delivering consistent nutrition advice, and building and sustaining patient motivation to enable change in dietary behaviour. Improving service delivery and developing and delivering targeted, multifaceted self-management interventions may enhance current nutritional management of patients on haemodialysis

Patients' Experiences and Perspectives of Telehealth Coaching with a Dietitian to Improve Diet Quality in Chronic Kidney Disease: A Qualitative Interview Study

Background: Dietary behavior change interventions for the self-management of chronic kidney disease (CKD) have the potential to slow disease progression and reduce metabolic complications. Telehealth-delivered dietary interventions may assist in the self-management of CKD, although their acceptability by patients is unknown. Objective: This study aims to describe the acceptability and experiences of a telehealth coaching intervention that utilized telephone calls and tailored text messages to improve diet quality in patients with stage 3 to 4 CKD. Design: Semistructured interview study of adults with CKD. Participants/setting: Adults with stage 3 to 4 CKD (n=21) aged 28 to 78 (mean 62) years, who completed a 12-week telehealth-delivered dietary intervention in Queensland, Australia, were interviewed from March to July 2017. Data analysis: Interviews were transcribed verbatim and analyzed thematically. Results: Five themes were identified: valuing relationships (receiving tangible and perceptible support, building trust and rapport remotely, motivated by accountability, readily responding to a personalized approach, reassured by health professional expertise); appreciating convenience (integrating easily into lifestyle, talking comfortably in a familiar environment, minimizing travel and wait time burden); empowered with actionable knowledge (comprehending diet-disease mechanisms, practical problem solving for sustainable dietary behavior); increasing diet consciousness (learning from recurrent feedback, prompted by reiteration of messages); making sense of complexity (contextualizing and prioritizing comorbidities, gaining confidence to make dietary decisions, setting and achieving realistic goals). Conclusions: Among adults with stage 3 to 4 CKD, individualized telehealth coaching for improving diet quality was convenient for patients, and they felt supported and empowered to navigate recommendations and prioritize dietary behavior changes. Telehealth-delivered dietary interventions appear to be well accepted by patients as a way of providing regular, tailored contact with a health professional to support dietary management in CKD

Dietary patterns for adults with chronic kidney disease

This is the protocol for a review and there is no abstract. The objectives are as follows: This review will evaluate the benefits and harms of dietary patterns among adults with CKD (any stage including people with end-stage kidney disease (ESKD) treated with dialysis, transplantation or supportive care)

Dietary interventions for adults with chronic kidney disease

Background: Dietary changes are routinely recommended in people with chronic kidney disease (CKD) on the basis of randomised evidence in the general population and non-randomised studies in CKD that suggest certain healthy eating patterns may prevent cardiovascular events and lower mortality. People who have kidney disease have prioritised dietary modifications as an important treatment uncertainty. Objectives: This review evaluated the benefits and harms of dietary interventions among adults with CKD including people with end-stage kidney disease (ESKD) treated with dialysis or kidney transplantation. Search methods: We searched the Cochrane Kidney and Transplant Specialised Register (up to 31 January 2017) through contact with the Information Specialist using search terms relevant to this review. Studies contained in the Specialised Register are identified through search strategies specifically designed for CENTRAL, MEDLINE, and EMBASE; handsearching conference proceedings; and searching the International Clinical Trials Register (ICTRP) Search Portal and ClinicalTrials.gov. Selection criteria: Randomised controlled trials (RCTs) or quasi-randomised RCTs of dietary interventions versus other dietary interventions, lifestyle advice, or standard care assessing mortality, cardiovascular events, health-related quality of life, and biochemical, anthropomorphic, and nutritional outcomes among people with CKD. Data collection and analysis: Two authors independently screened studies for inclusion and extracted data. Results were summarised as risk ratios (RR) for dichotomous outcomes or mean differences (MD) or standardised MD (SMD) for continuous outcomes, with 95% confidence intervals (CI) or in descriptive format when meta-analysis was not possible. Confidence in the evidence was assessed using GRADE. Main results: We included 17 studies involving 1639 people with CKD. Three studies enrolled 341 people treated with dialysis, four studies enrolled 168 kidney transplant recipients, and 10 studies enrolled 1130 people with CKD stages 1 to 5. Eleven studies (900 people) evaluated dietary counselling with or without lifestyle advice and six evaluated dietary patterns (739 people), including one study (191 people) of a carbohydrate-restricted low-iron, polyphenol enriched diet, two studies (181 people) of increased fruit and vegetable intake, two studies (355 people) of a Mediterranean diet and one study (12 people) of a high protein/low carbohydrate diet. Risks of bias in the included studies were generally high or unclear, lowering confidence in the results. Participants were followed up for a median of 12 months (range 1 to 46.8 months). Studies were not designed to examine all-cause mortality or cardiovascular events. In very-low quality evidence, dietary interventions had uncertain effects on all-cause mortality or ESKD. In absolute terms, dietary interventions may prevent one person in every 3000 treated for one year avoiding ESKD, although the certainty in this effect was very low. Across all 17 studies, outcome data for cardiovascular events were sparse. Dietary interventions in low quality evidence were associated with a higher health-related quality of life (2 studies, 119 people: MD in SF-36 score 11.46, 95% CI 7.73 to 15.18; I = 0%). Adverse events were generally not reported. Dietary interventions lowered systolic blood pressure (3 studies, 167 people: MD -9.26 mm Hg, 95% CI -13.48 to -5.04; I = 80%) and diastolic blood pressure (2 studies, 95 people: MD -8.95, 95% CI -10.69 to -7.21; I = 0%) compared to a control diet. Dietary interventions were associated with a higher estimated glomerular filtration rate (eGFR) (5 studies, 219 people: SMD 1.08; 95% CI 0.26 to 1.97; I = 88%) and serum albumin levels (6 studies, 541 people: MD 0.16 g/dL, 95% CI 0.07 to 0.24; I = 26%). A Mediterranean diet lowered serum LDL cholesterol levels (1 study, 40 people: MD -1.00 mmol/L, 95% CI -1.56 to -0.44). Authors' conclusions: Dietary interventions have uncertain effects on mortality, cardiovascular events and ESKD among people with CKD as these outcomes were rarely measured or reported. Dietary interventions may increase health-related quality of life, eGFR, and serum albumin, and lower blood pressure and serum cholesterol levels. Based on stakeholder prioritisation of dietary research in the setting of CKD and preliminary evidence of beneficial effects on risks factors for clinical outcomes, large-scale pragmatic RCTs to test the effects of dietary interventions on patient outcomes are required

Diagnosis, monitoring and treatment of systemic lupus erythematosus: a systematic review of clinical practice guidelines.

Objectives: Management of SLE is complex and variability in practices exists. Guidelines have been developed to help improve the management of SLE patients but there has been no formal evaluation of these guidelines. This study aims to compare the scope, quality and consistency of clinical practice guidelines on the diagnosis, monitoring and treatment of patients with systemic lupus erythematosus (SLE). Methods: Electronic databases were searched up to April 2014. The Appraisal of Guidelines for Research and Evaluation (AGREE) II instrument and textual synthesis was used to appraise and compare recommendations. Results: Nine clinical practice guidelines and five consensus statements were identified, which covered seven topics: diagnosis, monitoring, treatment, neuropsychiatric SLE, lupus nephritis, anti-phospholipid syndrome and other manifestations of lupus. The methodological quality of the guidelines was variable, with the overall mean AGREE II scores ranging from 31% to 75% out of a maximum 100%. Scores were consistently low for applicability, with only one guideline scoring above 50%. There was substantial variability in the treatments recommended for class II and V lupus nephritis, the recommended duration of maintenance therapy for class III/IV lupus nephritis (from 1 to 4 years), and timing of ophthalmological examination for patients on corticosteroids. Conclusion: Published guidelines on SLE cover a complex area of clinical care but the methodological quality, scope and recommendations varied substantially. Collaborative and multidisciplinary efforts to develop comprehensive, high-quality evidence-based guidelines are needed to promote best treatment and health outcomes for patients with SLE.DT is funded by a postgraduate scholarship from the Sydney Medical School, The University of Sydney

Feasibility and acceptability of telehealth coaching to promote healthy eating in chronic kidney disease: A mixed-methods process evaluation

Objective To evaluate the feasibility and acceptability of a personalised telehealth intervention to support dietary self-management in adults with stage 3-4 chronic kidney disease (CKD). Design Mixed-methods process evaluation embedded in a randomised controlled trial. Participants People with stage 3-4 CKD (estimated glomerular filtration rate [eGFR]15-60 mL/min/1.73 m 2). Setting Participants were recruited from three hospitals in Australia and completed the intervention in ambulatory community settings. Intervention The intervention group received one telephone call per fortnight and 2-8 tailored text messages for 3 months, and then 4-12 tailored text messages for 3 months without telephone calls. The control group received usual care for 3 months then non-tailored education-only text messages for 3 months. Main outcome measures Feasibility (recruitment, non-participation and retention rates, intervention fidelity and participant adherence) and acceptability (questionnaire and semistructured interviews). Statistical analyses performed Descriptive statistics and qualitative content analysis. Results Overall, 80/230 (35%) eligible patients who were approached consented to participate (mean±SD age 61.5±12.6 years). Retention was 93% and 98% in the intervention and control groups, respectively, and 96% of all planned intervention calls were completed. All participants in the intervention arm identified the tailored text messages as useful in supporting dietary self-management. In the control group, 27 (69%) reported the non-tailored text messages were useful in supporting change. Intervention group participants reported that the telehealth programme delivery methods were practical and able to be integrated into their lifestyle. Participants viewed the intervention as an acceptable, personalised alternative to face-face clinic consultations, and were satisfied with the frequency of contact. Conclusions This telehealth-delivered dietary coaching programme is an acceptable intervention which appears feasible for supporting dietary self-management in stage 3-4 CKD. A larger-scale randomised controlled trial is needed to evaluate the efficacy of the coaching programme on clinical and patient-reported outcomes. Trial registration number ACTRN12616001212448; Results

Targeted, structured text messaging to improve dietary and lifestyle behaviours for people on maintenance haemodialysis (KIDNEYTEXT): Study protocol for a randomised controlled trial

Introduction Managing nutrition is critical for reducing morbidity and mortality in patients on haemodialysis but adherence to the complex dietary restrictions remains problematic. Innovative interventions to enhance the delivery of nutritional care are needed. The aim of this phase II trial is to evaluate the feasibility and effectiveness of a targeted mobile phone text messaging system to improve dietary and lifestyle behaviours in patients on long-term haemodialysis. Methods and analysis Single-blinded randomised controlled trial with 6 months of follow-up in 130 patients on haemodialysis who will be randomised to either standard care or KIDNEYTEXT. The KIDNEYTEXT intervention group will receive three text messages per week for 6 months. The text messages provide customised dietary information and advice based on renal dietary guidelines and general healthy eating dietary guidelines, and motivation and support to improve behaviours. The primary outcome is feasibility including recruitment rate, drop-out rate, adherence to renal dietary recommendations, participant satisfaction and a process evaluation using semistructured interviews with a subset of purposively sampled participants. Secondary and exploratory outcomes include a range of clinical and behavioural outcomes and a healthcare utilisation cost analysis will be undertaken. Ethics and dissemination The study has been approved by the Western Sydney Local Health District Human Research Ethics Committee-Westmead. Results will be presented at scientific meetings and published in peer-reviewed publications. Trial registration number ACTRN12617001084370; Pre-results

Melanocytic Galectin-3 Is Associated with Tyrosinase-Related Protein-1 and Pigment Biosynthesis

Galectin-3 is a family member of the carbohydrate-binding proteins widely expressed by many cell types and exhibits multiple cellular functions. We demonstrate that melanocytes express galectin-3, which is predominantly localized to the cell body peripherally along the Golgi zone. Downregulation of galectin-3 in human melanocytes using short hairpin RNA technology resulted in the reduction of both melanin synthesis and expression/activity of tyrosinase-related protein-1 (Tyrp-1). In the cell body, galectin-3 colocalizes with melanosome-destined cargo, specifically tyrosinase and Tyrp-1. We studied melanocytes cultured from patients with forms of Hermansky–Pudlak syndrome (HPS) containing defects in trafficking steps governed by biogenesis of lysosome-related organelle complex-2 (BLOC-2) (HPS-5), BLOC-3 (HPS-1), and adaptin-3 (HPS-2). We found that galectin-3 expression mimicked the defective expression of the tyrosinase cargo in dendrites of HPS-5 melanocytes, but it was not altered in HPS-1 or HPS-2 melanocytes. In addition, galectin-3 colocalized predominantly with the HPS-5 component of BLOC-2 in normal human melanocytes. These data indicate that galectin-3 is a regulatory component in melanin synthesis affecting the expression of Tyrp-1