Your browser doesn't support javascript.
loading
Show: 20 | 50 | 100
Results 1 - 20 de 80
Filter
1.
Article in English | MEDLINE | ID: mdl-39250223

ABSTRACT

BACKGROUND: Many patients with chronic kidney disease (CKD) experience loneliness and social isolation, which are associated with a higher risk of mortality, morbidity, and poor mental health. We aimed to describe the perspectives of patients with CKD and their caregivers on loneliness and social isolation, to inform strategies to increase social participation. METHODS: A secondary analysis of qualitative data from the Standardized Outcomes in Nephrology (SONG) initiative dataset (36 focus groups, three Delphi surveys and seven consensus workshops) was conducted. We extracted and thematically analyzed data from patients with CKD, including those receiving hemodialysis or peritoneal dialysis and those with a kidney transplant, as well as their caregivers, on the perspectives and experiences of loneliness and social isolation. RESULTS: Collectively the studies included 1261 patients and caregivers from 25 countries. Six themes were identified: restricted by the burdens of disease and treatment (withdrawing from social activities due to fatigue, consumed by the dialysis regimen, tethered to treatment, travel restrictions); external vulnerability (infection risk, anxiety of dining out); diminishing societal role (grieving loss of opportunities, social consequences of inability to work); fending for oneself in healthcare (no one to relate to, lost in uncertainty, unmet psychosocial needs); undermining self-esteem (unable to engage in activities which previously defined self, shame and self-consciousness about appearance, hindering confidence for intimate relationships); and feeling ostracized (disconnected by family and friends, fear of stigma and being misunderstood, guilt of burdening others). CONCLUSIONS: For patients with CKD and their caregivers, social participation is substantially impaired by the burden of CKD and its treatment, and fear of risks to health such as infection. This undermines patient and caregiver mental health, particularly self-esteem and sense of belonging. Additional interventions are needed to improve social connections among people with CKD and their caregivers.

2.
Semin Nephrol ; : 151549, 2024 Sep 16.
Article in English | MEDLINE | ID: mdl-39289130

ABSTRACT

The outcomes reported in trials across all stages of chronic kidney disease (CKD) are highly variable and often do not include outcomes that are directly relevant to patients and caregivers. Frequently, the outcomes reported in trials are often unvalidated surrogate biochemical end points. The omission of outcomes that are meaningful and important to patients can diminish the value of trials in supporting treatment decisions. In response, there have been increasing efforts across many health and medical disciplines to develop core outcome sets, defined as the minimum set of outcomes to be reported in all trials in a specific health area to improve the relevance and consistency of reporting trial outcomes. The international Standardized Outcomes in Nephrology (SONG) initiative was established in 2014 and has since developed seven core outcome sets for different diagnosis and treatment stages of CKD. The core outcomes were based on consensus among patients, caregivers, and health professionals. Each core outcome set includes at least one patient-reported outcome, including fatigue (hemodialysis), life participation (kidney transplantation, peritoneal dialysis, early CKD not yet requiring kidney replacement therapy, children and adolescents, and glomerular disease), and pain (polycystic kidney disease). This article outlines how patient-reported outcomes are currently reported in trials, discusses core patient-reported outcomes that have been established for trials in kidney disease, and outlines strategies for implementing core patient-reported outcomes in trials.

3.
Kidney Int ; 2024 Aug 12.
Article in English | MEDLINE | ID: mdl-39142564

ABSTRACT

Prospective cohort studies of kidney equity are limited by a focus on advanced rather than early disease and selective recruitment. Whole population studies frequently rely on area-level measures of deprivation as opposed to individual measures of social disadvantage. Here, we linked kidney health and individual census records in the North of Scotland (Grampian area), 2011-2021 (GLOMMS-CORE) and identified incident kidney presentations at thresholds of estimated glomerular filtration rate (eGFR) under 60 (mild/early), under 45 (moderate), under 30 ml/min/1.73m2 (advanced), and acute kidney disease (AKD). Household and neighborhood socioeconomic measures, living circumstances, and long-term mortality were compared. Case-mix adjusted multivariable logistic regression (living circumstances), and Cox models (mortality) incorporating an interaction between the household and the neighborhood were used. Among census respondents, there were 48546, 29081, 16116, 28097 incident presentations of each respective eGFR cohort and AKD. Classifications of socioeconomic position by household and neighborhood were related but complex, and frequently did not match. Compared to households of professionals, people with early kidney disease in unskilled or unemployed households had increased mortality (adjusted hazard ratios: 95% confidence intervals) of (1.26: 1.19-1.32) and (1.77: 1.60-1.96), respectively with adjustment for neighborhood indices making little difference. Those within either a deprived household or deprived neighborhood experienced greater mortality, but those within both had the poorest outcomes. Unskilled and unemployed households frequently reported being limited by illness, adverse mental health, living alone, basic accommodation, lack of car ownership, language difficulties, and visual and hearing impairments. Thus, impacts of deprivation on kidney health are spread throughout society-complex, serious, and not confined to those living in deprived neighborhoods.

4.
Semin Nephrol ; 44(1): 151502, 2024 Jan.
Article in English | MEDLINE | ID: mdl-38851939

ABSTRACT

Kidney transplantation offers recipients superior outcomes and improved quality of life compared with dialysis. However, the need for ongoing immunosuppression places recipients at increased risk of certain forms of cancer. Screening and early detection of precancerous lesions are one of the few proven ways to lower the risk of cancer morbidity and mortality in the transplant population. Women have additional barriers to cancer screening services globally, especially in low- and middle-income countries as well as within certain disadvantaged groups in high-income countries. There is a dearth of published data on screening guidelines and policies on post-transplant malignancy in female recipients. It is vital that health care providers and patients are educated regarding the risks of cancer at all post-transplant stages and that the recommended screening policies are adhered to in order to reduce associated morbidity and mortality in this at-risk group.


Subject(s)
Early Detection of Cancer , Health Services Accessibility , Kidney Transplantation , Humans , Female , Neoplasms/prevention & control , Breast Neoplasms/prevention & control , Breast Neoplasms/diagnosis , Ovarian Neoplasms/prevention & control , Ovarian Neoplasms/diagnosis , Uterine Cervical Neoplasms/prevention & control , Uterine Cervical Neoplasms/diagnosis , Mass Screening/methods , Global Health
5.
Pediatr Nephrol ; 39(10): 3079-3093, 2024 Oct.
Article in English | MEDLINE | ID: mdl-38856776

ABSTRACT

BACKGROUND: Caregivers of children with chronic kidney disease (CKD) in low resource settings must provide complex medical care at home while being burdened by treatment costs often paid out-of-pocket. We hypothesize that caregiver burden in our low resource setting is greater than reported from high income countries and is associated with frequent catastrophic healthcare expenditure (CHE). METHODS: We conducted a mixed-methods study of primary caregivers of children with advanced CKD (stage 3b-5) in our private-sector referral hospital in a low resource setting. We assessed caregiver burden using the Pediatric Renal Caregiver Burden Scale (PRCBS) and measured financial burden by calculating the proportion of caregivers who experienced CHE (monthly out-of-pocket healthcare expenditure exceeding 10% of total household monthly expenditure). We performed a qualitative reflexive thematic analysis of caregiver interviews to explore sources of burden. RESULTS: Of the 45 caregivers included, 35 (78%) had children on maintenance dialysis (25 PD, 10 HD). Mean caregiver burden score was 141 (± 17), greater than previously reported. On comparative analysis, PRCBS scores were higher among caregivers of children with kidney failure (p = 0.005), recent hospitalization (p = 0.03), non-earning caregivers (p = 0.02), caring for > 2 dependents (p = 0.009), and with high medical expenditure (p = 0.006). CHE occurred in 43 (96%) caregivers of whom 37 (82%) paid out-of-pocket. The main themes derived relating to caregiver burden were severe financial burden, mental stress and isolation, and perpetual burden of concern. CONCLUSION: Parents of children with CKD experienced severe caregiver burden with frequent CHE and relentless financial stress indicating an imminent need for social support interventions.


Subject(s)
Caregiver Burden , Health Expenditures , Renal Insufficiency, Chronic , Humans , Male , Female , Health Expenditures/statistics & numerical data , Child , Renal Insufficiency, Chronic/economics , Renal Insufficiency, Chronic/therapy , Renal Insufficiency, Chronic/psychology , Caregiver Burden/psychology , Caregiver Burden/economics , Adolescent , Child, Preschool , Cost of Illness , Adult , Caregivers/psychology , Caregivers/economics , Caregivers/statistics & numerical data , Middle Aged , Resource-Limited Settings
6.
Am J Kidney Dis ; 84(4): 482-494, 2024 Oct.
Article in English | MEDLINE | ID: mdl-38810688

ABSTRACT

Patient and caregiver involvement can enhance the uptake and impact of research, but the involvement of patients and caregivers who are underserved and marginalized is often limited. A better understanding of how to make involvement in research more broadly accessible, supportive, and inclusive for patients with chronic kidney disease (CKD) and caregivers is needed. We conducted a national workshop involving patients, caregivers, clinicians, and researchers from across Australia to identify strategies to increase the diversity of patients and caregivers involved in CKD research. Six themes were identified. Building trust and a sense of safety was considered pivotal to establishing meaningful relationships to support knowledge exchange. Establishing community and connectedness was expected to generate a sense of belonging to motivate involvement. Balancing stakeholder goals, expectations, and responsibilities involved demonstrating commitment and transparency by researchers. Providing adequate resources and support included strategies to minimize the burden of involvement for patients and caregivers. Making research accessible and relatable was about nurturing patient and caregiver interest by appealing to intrinsic motivators. Adapting to patient and caregiver needs and preferences required tailoring the approach for individuals and the target community. Strategies and actions to support these themes may support more diverse and equitable involvement of patients and caregivers in research in CKD.


Subject(s)
Caregivers , Patient Participation , Renal Insufficiency, Chronic , Humans , Caregivers/psychology , Renal Insufficiency, Chronic/therapy , Renal Insufficiency, Chronic/psychology , Australia , Translational Research, Biomedical , Biomedical Research
7.
BMJ Open ; 14(3): e082184, 2024 Mar 11.
Article in English | MEDLINE | ID: mdl-38471683

ABSTRACT

OBJECTIVES: Peritoneal dialysis (PD) allows patients increased autonomy and flexibility; however, both infectious and non-infectious complications may lead to technique failure, which shortens treatment longevity. Maintaining patients on PD remains a major challenge for nephrologists. This study aims to describe nephrologists' perspectives on technique survival in PD. DESIGN: Qualitative semistructured interview study. Transcripts were thematically analysed. SETTING AND PARTICIPANTS: 30 nephrologists across 11 countries including Australia, the USA, the UK, Hong Kong, Canada, Singapore, Japan, New Zealand, Thailand, Colombia and Uruguay were interviewed from April 2017 to November 2019. RESULTS: We identified four themes: defining patient suitability (confidence in capacity for self-management, ensuring clinical stability and expected resilience), building endurance (facilitating access to practical support, improving mental well-being, optimising quality of care and training to reduce risk of complications), establishing rapport through effective communications (managing expectations to enhance trust, individualising care and harnessing a multidisciplinary approach) and confronting fear and acknowledging barriers to haemodialysis (preventing crash landing to haemodialysis, facing concerns of losing independence and positive framing of haemodialysis). CONCLUSION: Nephrologists reported that technique survival in PD is influenced by patients' medical circumstances, psychological motivation and positively influenced by the education and support provided by treating clinicians and families. Strategies to enhance patients' knowledge on PD and communication with patients about technique survival in PD are needed to build trust, set patient expectations of treatment and improve the process of transition off PD.


Subject(s)
Nephrologists , Peritoneal Dialysis , Humans , Renal Dialysis/methods , Qualitative Research , Communication
8.
J Clin Epidemiol ; 170: 111330, 2024 Jun.
Article in English | MEDLINE | ID: mdl-38537911

ABSTRACT

OBJECTIVES: The involvement of consumers (people with lived experience of disease) in guidelines is widely advocated to improve their relevance and uptake. However, the approaches to consumer involvement in guidelines vary and are not well documented. We describe the consumer involvement framework of Caring for Australians and New ZealandeRs with kidney Impairment Guidelines. STUDY DESIGN AND SETTING: We used a descriptive document analysis to collate all relevant policies, documents, e-mails, and presentations on consumer involvement in our organizations. We performed a narrative synthesis of collated data to summarize our evolving consumer involvement approach in guidelines. RESULTS: We involve consumers at all levels of Caring for Australians and New ZealandeRs with kidney Impairment guideline development and dissemination according to their capacity, from conducting consumer workshops to inform the scope of guidelines, to including consumers as members of the guideline Working Groups and overseeing operations and governance as members of the Steering Committee and staff. Our approach has resulted in tangible outcomes including high-priority topics on patient education, psychosocial care, and clinical care pathways, and focusing the literature reviews to assess patient-important outcomes. The ongoing partnership with consumers led to the generation of consumer version guidelines to improve guideline dissemination and translation to support shared decision-making. CONCLUSION: Meaningful consumer involvement can be achieved through a comprehensive approach across the entire lifecycle of guidelines. However, it must be individualized by ensuring that the involvement of consumers is timely and flexible. Future work is needed to assess the impact of consumer involvement in guideline development.


Subject(s)
Community Participation , Practice Guidelines as Topic , Renal Insufficiency, Chronic , Humans , Australasian People , Australia , Community Participation/methods , Information Dissemination/methods , New Zealand , Renal Insufficiency, Chronic/therapy
9.
Semin Nephrol ; 44(1): 151499, 2024 Jan.
Article in English | MEDLINE | ID: mdl-38538454

ABSTRACT

Cancer has been identified by kidney transplant recipients as a critically important outcome. The co-occurrence of cancer and kidney transplantation represents a complex intersection of diseases, symptoms, and competing priorities for treatments. Research that focuses on biochemical parameters and clinical events may not capture the priorities of patients. Patient-centered research can improve the relevance and efficiency of research and is particularly pertinent in the setting of cancer and kidney transplantation to facilitate shared decision-making in complex clinical situations. In addition, patient-reported outcomes can facilitate the assessment of patients' experiences, symptom burden, treatment side effects, and quality of life. This review discusses patient-centered research in the context of kidney transplantation and cancer, including consumer involvement in research and patient-centered outcomes and their measures and inclusion in core outcome sets.


Subject(s)
Kidney Transplantation , Neoplasms , Patient Reported Outcome Measures , Patient-Centered Care , Quality of Life , Humans , Neoplasms/surgery , Kidney Failure, Chronic/surgery , Kidney Failure, Chronic/complications , Decision Making, Shared
10.
Kidney Int Rep ; 9(1): 87-95, 2024 Jan.
Article in English | MEDLINE | ID: mdl-38312789

ABSTRACT

Introduction: Life participation has been established as a critically important core for trials in kidney transplantation. We aimed to validate a patient-reported outcome measure for life participation in kidney transplant recipients. Methods: A psychometric evaluation of the Standardized Outcomes in Nephrology life participation (SONG-LP) measure was conducted in adult kidney transplant recipients. The measure includes 4 items of life participation (leisure, family, work, and social) each with a 5-point Likert scale. Each item is scored from 0 (never) to 4 (always) and the summary measure score the average of each item. Results: A total of 249 adult kidney transplant recipients from 20 countries participated. The SONG-LP instrument demonstrated internal consistency (Cronbach's α = 0.87; 95% confidence intervals [CI]: 0.83-0.90, baseline) and test-retest reliability over 1 week (intraclass correlation coefficient of 0.62; 95% CI: 0.54-0.70). There was moderate to high correlation (0.65; 95% CI: 0.57-0.72) with the PROMIS Ability to Participate in Social Roles and Activities Short Form 8a that assessed a similar construct, and moderate correlation with measures that assessed related concepts (i.e., EQ5D 0.57; 95% CI: 0.49-0.65), PROMIS Cognitive Functional Abilities Subset Short Form 4a (0.40; 95% CI: 0.29-0.50). Conclusion: The SONG-LP instrument is a simple, internally consistent, reliable measure for kidney transplant recipients and correlates with similar measures. Routine incorporation in clinical trials will ensure consistent and appropriate assessment of life participation for informed patient-centered decision-making.

11.
Aust N Z J Public Health ; 48(2): 100131, 2024 Apr.
Article in English | MEDLINE | ID: mdl-38422583

ABSTRACT

OBJECTIVE: To describe how Commonwealth, state and territory policies address access to care for Australians living with chronic kidney disease (CKD) with an emphasis on Aboriginal and Torres Strait Islanders and people residing in rural and remote areas. METHODS: We searched government health department websites for current policies up to March 2022 that addressed access to care for people with CKD. RESULTS: We included 98 policies: 28 were Commonwealth, and 70 were state or territory-based. There was wide variation in the policies for people with CKD in number and type across the jurisdictions. Of CKD specific policies, only three policies were specific for people living with CKD in rural and remote areas and no policies were specific for Aboriginal and Torres Strait Islander people. CONCLUSION: There is a lack of CKD-specific policies addressing access to care for Aboriginal and Torres Strait Islander people and people living in rural and remote communities. IMPLICATIONS FOR PUBLIC HEALTH: Despite the known disparities in the burden of CKD there are few policies addressing CKD disparities for Aboriginal and Torres Strait Islander people and Australians living in rural and remote areas. Policies that specifically address the barriers to accessing care are required to reduce inequities.


Subject(s)
Australasian People , Caregivers , Health Policy , Health Services Accessibility , Health Services, Indigenous , Native Hawaiian or Other Pacific Islander , Renal Insufficiency, Chronic , Rural Population , Humans , Australia , Renal Insufficiency, Chronic/therapy , Renal Insufficiency, Chronic/ethnology , Health Services, Indigenous/organization & administration , Healthcare Disparities/ethnology
13.
Article in English | MEDLINE | ID: mdl-38190177

ABSTRACT

Home dialysis offers several clinical and quality-of-life benefits for patients with kidney failure. However, it is important to recognize that home dialysis may place an increased burden on patients and their care partners. Sources of burden may include concerns about the ability to adequately and safely perform dialysis at home, physical symptoms, impairment of life participation, psychosocial challenges, and care partner burnout. Overlooking or failing to address these issues may lead to adverse events that negatively affect health and quality of life and reduce longevity of home dialysis. This study will explore aspects of home dialysis associated with burden, emphasize the need for increased awareness of potential challenges, and elaborate on strategies to overcome sources of burden. Future research should actively involve patients and care partners to better understand their motivation, experiences, and needs to better inform support strategies.

14.
Nephrol Dial Transplant ; 39(8): 1310-1321, 2024 Jul 31.
Article in English | MEDLINE | ID: mdl-38236705

ABSTRACT

BACKGROUND: Many outcomes of high priority to patients and clinicians are infrequently and inconsistently reported across trials in chronic kidney disease (CKD), which generates research waste and limits evidence-informed decision making. We aimed to generate consensus among patients/caregivers and health professionals on critically important outcomes for trials in CKD prior to kidney failure and the need for kidney replacement therapy, and to describe the reasons for their choices. METHODS: This was an online two-round international Delphi survey. Adult patients with CKD (all stages and diagnoses), caregivers and health professionals who could read English, Spanish or French were eligible. Participants rated the importance of outcomes using a Likert scale (7-9 indicating critical importance) and a Best-Worst Scale. The scores for the two groups were assessed to determine absolute and relative importance. Comments were analysed thematically. RESULTS: In total, 1399 participants from 73 countries completed Round 1 of the Delphi survey, including 628 (45%) patients/caregivers and 771 (55%) health professionals. In Round 2, 790 participants (56% response rate) from 63 countries completed the survey including 383 (48%) patients/caregivers and 407 (52%) health professionals. The overall top five outcomes were: kidney function, need for dialysis/transplant, life participation, cardiovascular disease and death. In the final round, patients/caregivers indicated higher scores for most outcomes (17/22 outcomes), and health professionals gave higher priority to mortality, hospitalization and cardiovascular disease (mean difference >0.3). Consensus was based upon the two groups yielding median scores of ≥7 and mean scores >7, and the proportions of both groups rating the outcome as 'critically important' being >50%. Four themes reflected the reasons for their priorities: imminent threat of a health catastrophe, signifying diminishing capacities, ability to self-manage and cope, and tangible and direct consequences. CONCLUSION: Across trials in CKD, the outcomes of highest priority to patients, caregivers and health professionals were kidney function, need for dialysis/transplant, life participation, cardiovascular disease and death.


Subject(s)
Caregivers , Delphi Technique , Health Personnel , Renal Insufficiency, Chronic , Humans , Caregivers/psychology , Male , Female , Renal Insufficiency, Chronic/therapy , Middle Aged , Adult , Health Personnel/psychology , Aged , Clinical Trials as Topic , Surveys and Questionnaires , Outcome Assessment, Health Care/methods
15.
Am J Kidney Dis ; 83(2): 139-150.e1, 2024 Feb.
Article in English | MEDLINE | ID: mdl-37730171

ABSTRACT

RATIONALE & OBJECTIVE: Indigenous People suffer a high burden of kidney disease. Those receiving maintenance dialysis have worse outcomes compared with similarly treated non-Indigenous patients. We characterized the experiences of Indigenous patients receiving dialysis in British-colonized countries to gain insights into which aspects of kidney care may benefit from improvement. STUDY DESIGN: A systematic review of published qualitative interview studies. SETTING & STUDY POPULATIONS: Indigenous Peoples aged 18 years and over, receiving hemodialysis or peritoneal dialysis in British-colonized countries. SELECTION CRITERIA FOR STUDIES: Search terms for Indigenous Peoples, dialysis, and qualitative research were entered into Medline, Embase, PsycINFO, and CINAHL and searched from inception to January 5, 2023. DATA EXTRACTION: Characteristics of each study were extracted into Microsoft Excel for quality assessment. ANALYTICAL APPROACH: Data were analyzed using thematic synthesis. RESULTS: The analysis included 28 studies involving 471 participants from Australia, New Zealand, Canada, and the United States. We identified four themes: centrality of family and culture (continuing dialysis for family, gaining autonomy through shared involvement, balancing primary responsibility to care for family); marginalization due to structural and social inequities (falling through gaps in primary care intensifying shock, discriminated against and judged by specialists, alienated and fearful of hospitals, overwhelmed by travel, financial and regimental burdens); vulnerability in accessing health care (need for culturally responsive care, lack of language interpreters, without agency in decision-making, comorbidities compounding complexity of self-management); and distress from separation from community (disenfranchisement and sorrow when away for dialysis, inability to perpetuate cultural continuity, seeking a kidney transplant). LIMITATIONS: We only included articles published in English. CONCLUSIONS: Indigenous patients receiving dialysis experience inequities in health care that compound existing accessibility issues caused by colonization. Improving the accessibility and cultural responsiveness of dialysis and kidney transplant services in collaboration with Indigenous stakeholders holds promise to enhance the experience of Indigenous patients receiving dialysis. PLAIN-LANGUAGE SUMMARY: Worldwide Indigenous populations suffer a high incidence of chronic disease leading to lower life expectancy, particularly for kidney disease, an insidious condition requiring long-term dialysis treatment. By listening to Indigenous dialysis patients' stories, we hoped to understand how to improve their experience. We gathered 28 qualitative research studies from four countries reporting Indigenous adults' experiences of dialysis. They described lacking awareness of kidney disease, poor access to health services, systemic racism, inadequate cultural safety, and being dislocated from family, community, and culture. These findings indicate that respectful collaboration with Indigenous Peoples to craft and implement policy changes holds promise to improve prevention, integrate culturally responsive health care practices, and provide better access to local dialysis services and opportunities for kidney transplants.


Subject(s)
Indigenous Peoples , Kidney Diseases , Renal Dialysis , Adolescent , Adult , Humans , Chronic Disease , Health Services Accessibility , Kidney Diseases/therapy , Qualitative Research
16.
Am J Nephrol ; 55(3): 298-315, 2024.
Article in English | MEDLINE | ID: mdl-38109870

ABSTRACT

BACKGROUND: Chronic kidney disease (CKD) is an important but insufficiently recognized public health problem. Unprecedented advances in delaying progression of CKD and reducing kidney failure and death have been made in recent years, with the addition of the sodium-glucose cotransporter 2 inhibitors and other newer medication to the established standard of care with inhibitors of the renin-angiotensin system. Despite knowledge of these effective therapies, their prescription and use remain suboptimal globally, and more specially in low resource settings. Many challenges contribute to this gap between knowledge and translation into clinical care, which is even wider in lower resource settings across the globe. Implementation of guideline-directed care is hampered by lack of disease awareness, late or missed diagnosis, clinical inertia, poor quality care, cost of therapy, systemic biases, and lack of patient empowerment. All of these are exacerbated by the social determinants of health and global inequities. SUMMARY: CKD is a highly manageable condition but requires equitable and sustainable access to quality care supported by health policies, health financing, patient and health care worker education, and affordability of medications and diagnostics. KEY MESSAGES: The gap between the knowledge and tools to treat CKD and the implementation of optimal quality kidney care should no longer be tolerated. Advocacy, research and action are required to improve equitable access to sustainable quality care for CKD everywhere.


Subject(s)
Global Health , Quality of Health Care , Renal Insufficiency, Chronic , Humans , Renal Insufficiency, Chronic/therapy , Quality of Health Care/standards , Healthcare Disparities , Health Services Accessibility/organization & administration , Health Services Accessibility/standards , Health Equity
17.
Kidney Int Rep ; 8(10): 1978-1988, 2023 Oct.
Article in English | MEDLINE | ID: mdl-37850002

ABSTRACT

Introduction: Gastrointestinal (GI) symptoms in kidney transplant are common and debilitating. We aimed to ascertain patients' preferences for GI symptom management options to help future interventions align with treatment priorities. Methods: A discrete choice experiment was conducted with kidney transplant recipients in 3 Australian nephrology units. A multinomial logit model was used to quantify the preferences and trade-offs between 5 characteristics: cost, formulation, symptom burden, dietary changes, and medication quantities. Results: Seventy patients participated (mean age ± SD: 47 ± 15 years, 56% female), 57% had GI symptoms. Patients preferred interventions that will achieve complete resolution of GI symptoms compared to no improvement (odds ratio [95% confidence interval]: 15.3 [1.80, 129.50]), were delivered as a tablet rather than a sachet (1.6 [1.27, 2.08]), retained their current diet compared to eliminating food groups (6.0 [2.19, 16.27]), reduced medication burden (1.4 [1.06, 1.79]), and had lower costs (0.98 [0.96, 1.00]). Participants would be willing to pay AUD$142.20 [$83.90, $200.40] monthly to achieve complete resolution of GI symptoms or AUD$100.90 [$9.60, $192.10] to have moderate improvement in symptoms. Conclusions: Interventions that are highly effective in relieving all GI symptoms without the need for substantive dietary changes, and in tablet form, are most preferred by kidney transplant recipients.

18.
Clin Kidney J ; 16(Suppl 1): i57-i68, 2023 Sep.
Article in English | MEDLINE | ID: mdl-37711636

ABSTRACT

Patient and caregiver involvement broadens the scope of new knowledge generated from research and can enhance the relevance, quality and impact of research on clinical practice and health outcomes. Incorporating the perspectives of people with lived experience of chronic kidney disease (CKD) affords new insights into the design of interventions, study methodology, data analysis and implementation and has value for patients, healthcare professionals and researchers alike. However, patient involvement in CKD research has been limited and data on which to inform best practice is scarce. A number of frameworks have been developed for involving patients and caregivers in research in CKD and in health research more broadly. These frameworks provide an overall conceptual structure to guide the planning and implementation of research partnerships and describe values that are essential and strategies considered best practice when working with diverse stakeholder groups. This article aims to provide a summary of the strategies most widely used to support multistakeholder partnerships, the different ways patients and caregivers can be involved in research and the methods used to amalgamate diverse and at times conflicting points of view.

19.
Nat Rev Nephrol ; 19(11): 694-708, 2023 11.
Article in English | MEDLINE | ID: mdl-37580571

ABSTRACT

Health inequity refers to the existence of unnecessary and unfair differences in the ability of an individual or community to achieve optimal health and access appropriate care. Kidney diseases, including acute kidney injury and chronic kidney disease, are the epitome of health inequity. Kidney disease risk and outcomes are strongly associated with inequities that occur across the entire clinical course of disease. Insufficient investment across the spectrum of kidney health and kidney care is a fundamental source of inequity. In addition, social and structural inequities, including inequities in access to primary health care, education and preventative strategies, are major risk factors for, and contribute to, poorer outcomes for individuals living with kidney diseases. Access to affordable kidney care is also highly inequitable, resulting in financial hardship and catastrophic health expenditure for the most vulnerable. Solutions to these injustices require leadership and political will. The nephrology community has an important role in advocacy and in identifying and implementing solutions to dismantle inequities that affect kidney health.


Subject(s)
Health Services Accessibility , Kidney Diseases , Humans , Health Expenditures , Kidney
20.
Semin Nephrol ; 43(2): 151404, 2023 03.
Article in English | MEDLINE | ID: mdl-37598539

ABSTRACT

Nutrition is an integral component in the management of chronic kidney disease (CKD), and kidney health professionals play a crucial role in educating patients on dietary interventions for CKD. Several dietary modifications are indicated for CKD that require frequent adaptations with CKD progression and with underlying metabolic disturbances. However, poor adherence to dietary interventions is not uncommon among patients with CKD. An effective education program on nutrition intervention consists of providing knowledge and developing skills that are necessary to support behavioral change. The application of theoretical models of behavioral change such as social cognitive theory and the transtheoretical model in nutrition intervention has been reported to be effective in promoting changes in dietary habits. This review summarizes the evidence supporting the application of theoretical models as strategies to enhance nutrition education for patients with CKD. In addition, digital technologies are gaining interest in empowering patients and facilitating nutrition management in patients with CKD. This review also examines the applications of the latest digital technologies guided by behavioral theory in facilitating patients' changes in dietary intake patterns and lifestyle habits.


Subject(s)
Nutrition Therapy , Renal Insufficiency, Chronic , Humans , Renal Insufficiency, Chronic/therapy , Health Education , Life Style
SELECTION OF CITATIONS
SEARCH DETAIL