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1.
Semin Nephrol ; : 151549, 2024 Sep 16.
Artículo en Inglés | MEDLINE | ID: mdl-39289130

RESUMEN

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.

2.
Artículo en Inglés | MEDLINE | ID: mdl-39250223

RESUMEN

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.

3.
Aust J Prim Health ; 302024 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-39348502

RESUMEN

Background The factors informing decisions to fund health services for Aboriginal and Torres Strait Islander children are unclear. This study's objective aimed to describe decision-makers' perspectives on factors informing decisions to fund health services for Aboriginal and Torres Strait Islander children. Methods We conducted semi-structured interviews with 13 participants experienced in making funding decisions at organisational, state, territory and national levels. Decision-makers were from New South Wales, Northern Territory, Queensland, Victoria and Western Australia. Transcripts were analysed thematically following the principles of grounded theory. Results We identified five themes, each with subthemes. First, prioritising engagement for authentic partnerships (opportunities to build relationships and mutual understanding, co-design and co-evaluation for implementation). Second, valuing participant experiences to secure receptiveness (cultivating culturally safe environments to facilitate acceptability, empowering for self-determination and sustainability, strengthening connectedness and collaboration for holistic care, restoring confidence and generational trust through long-term commitments). Third, comprehensive approaches to promote health and wellbeing (linking impacts to developmental milestones, maintaining access to health care, broadening conceptualisations of child health). Fourth, threats to optimal service delivery (fractured and outdated technology systems amplify data access difficulties, failure to 'truly listen' fuelling redundant policy, rigid funding models undermining innovation). Fifth, navigating political and ideological hurdles to advance community priorities (negotiating politicians' willingness to support community-driven objectives, pressure to satisfy economic and policy considerations, countering entrenched hesitancy to community-controlled governance). Conclusion Decision-makers viewed participation, engagement, trust, empowerment and community acceptance as important indicators of service performance. This study highlights factors that influence decisions to fund health services for Aboriginal and Torres Strait Islander children.


Asunto(s)
Servicios de Salud del Indígena , Nativos de Hawái y Otras Islas del Pacífico , Humanos , Niño , Australia , Entrevistas como Asunto , Toma de Decisiones , Femenino , Investigación Cualitativa , Masculino , Aborigenas Australianos e Isleños del Estrecho de Torres
5.
Am J Nephrol ; 55(5): 561-582, 2024 Aug 27.
Artículo en Inglés | MEDLINE | ID: mdl-39191222

RESUMEN

INTRODUCTION: Chronic kidney disease (CKD) in stages 3-5 without albuminuria occurs more often in women than in men; however, most patients initiating and receiving kidney replacement therapy are men. Sex-determined biological factors and gender-related aspects both likely account for this discrepancy. Patient opinions on gender-related discrepancies in kidney care have not been investigated. METHODS: Building upon the findings of semi-structured interviews previously conducted with CKD patients and their caregivers, two questionnaires were developed to investigate patient behavior and opinions relating to gender and CKD. These questionnaires containing 39 items were distributed to eight outpatient clinics in Austria. Responses were descriptively analyzed and compared between genders, as well as between age-groups and CKD stages. RESULTS: Questionnaires from 783 patients and 98 caregivers were included in the analysis and covered health awareness and self-management of disease, the impact of gender roles and gender equality, and patient autonomy and trust in the health-care system. A total of 56.1% of men patients and 63.1% of women patients found that women were better at looking after their health compared to men (41.1%/34.3% no difference, 2.8%/2.6% men better). A total of 95.4% of men patients, 95.0% of women patients, 100% of men caregivers, and 95.5% of women caregivers stated that all patients with kidney disease were treated completely equally, irrespective of gender. CONCLUSION: Neither the patients nor the caregivers stated gender-determined treatment decisions in CKD care. Both men and women however agreed that women are better at maintaining their own health and excel in disease self-management.

6.
Am J Kidney Dis ; 2024 Aug 08.
Artículo en Inglés | MEDLINE | ID: mdl-39127401

RESUMEN

RATIONALE & OBJECTIVE: Growth failure is a common problem among children with chronic kidney disease (CKD). Reduced height is associated with psychosocial burden, social stigma, and impaired quality of life. This study aimed to describe the aspects of growth impairment that are most impactful from the perspectives of children with CKD, their parents, and health professionals. STUDY DESIGN: Qualitative study. SETTINGS & PARTICIPANTS: 120 children with CKD (aged 8-21 years), 250 parents, and 445 health professionals from 53 countries participated in 16 focus groups, two consensus workshops, and a Delphi survey. ANALYTICAL APPROACH: A thematic analysis of all qualitative data concerning growth from the Standardized Outcomes in Nephrology - Children and Adolescents (SONG-Kids) initiative. RESULTS: We identified five themes: diminishing psychological wellbeing (compared to and judged by peers, tired of explaining to others, damaging self-esteem), constrained life participation and enjoyment (deprived of normal school experiences, excluded from sports or competing at a disadvantage, impaired quality of life in adulthood); grappling with impacts of symptoms and treatment (difficulty understanding short stature and accessing help, lack of appetite, uncertainty regarding bone pains, medication side effects, burden of growth hormone treatment); facilitating timely interventions and optimizing outcomes (early indicator of disease, assessing management, maximizing transplant outcomes, minimizing morbidity); and keeping growth and health priorities in perspective (quality of life and survival of utmost priority, achieved adequate height). LIMITATIONS: Only English-speaking participants were included. CONCLUSIONS: Impaired growth may diminish psychological wellbeing, self-esteem, and participation in daily activities for children with CKD. Balancing different treatments that can affect growth complicates decision-making. These findings may inform the psychosocial support needed by children with CKD and their caregivers to address concerns about growth.

7.
Kidney Int ; 106(4): 736-748, 2024 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-38959996

RESUMEN

Patient navigators enable adult patients to circumnavigate complex health systems, improving access to health care and outcomes. Here, we aimed to evaluate the effects of a patient navigation program in children with chronic kidney disease (CKD). In this multi-center, randomized controlled trial, we randomly assigned children (aged 0-16 years) with CKD stages 1-5 (including children on dialysis or with kidney transplants), from low socioeconomic status backgrounds, and/or residing in remote areas, to receive patient navigation at randomization (immediate) or at six months (waitlist). The primary outcome was self-rated health (SRH) of participating children at six months, using intention to treat analysis. Secondary outcomes included caregivers' SRH and satisfaction with health care, children's quality of life, hospitalizations, and missed school days. Repeated measures of the primary outcome from baseline to six months were analyzed using cumulative logit mixed effects models. Semi-structured interviews were thematically evaluated. Of 398 screened children, 162 were randomized (80 immediate and 82 waitlist); mean age (standard deviation) of 8.8 (4.8) years with 64.8% male. SRH was not significantly different between the immediate and wait-listed groups at six months. There were also no differences across all secondary outcomes between the two groups. Caregivers' perspectives were reflected in seven themes: easing mental strain, facilitating care coordination, strengthening capacity to provide care, reinforcing care collaborations, alleviating family tensions, inability to build rapport and unnecessary support. Thus, in children with CKD, self-rated health may not improve in response to a navigator program, but caregivers gained skills related to providing and accessing care.


Asunto(s)
Navegación de Pacientes , Calidad de Vida , Insuficiencia Renal Crónica , Humanos , Masculino , Femenino , Niño , Navegación de Pacientes/organización & administración , Insuficiencia Renal Crónica/terapia , Insuficiencia Renal Crónica/psicología , Adolescente , Preescolar , Lactante , Cuidadores/psicología , Accesibilidad a los Servicios de Salud/organización & administración , Satisfacción del Paciente , Recién Nacido , Diálisis Renal , Trasplante de Riñón
8.
BMJ Open ; 14(7): e079832, 2024 Jul 17.
Artículo en Inglés | MEDLINE | ID: mdl-39019628

RESUMEN

OBJECTIVES: The study explored the perceived impacts of COVID-19 and its associated policies and social restrictions on health, self-management and access to healthcare. DESIGN: Cross-sectional observational (online survey) and qualitative study (semi-structured interviews and thematic analysis). SETTING: Australia. PARTICIPANTS: People with self-reported cardiovascular disease (CVD) and/or risk factors. RESULTS: Survey responses were collected from 690 participants (43.8% women, 40.1% over 65 years). Participants reported that their heart health had been affected by the pandemic (26.3%), were less likely to exercise (47.1%), have a healthy diet (25.9%) and take medications (9.4%). A large proportion were admitted to hospital (46.2%) and presented to the emergency department (40.6%). Difficulties in accessing healthcare providers (53.2%) and use of telemedicine (63.6%) were reported. We conducted 16 semi-structured interviews and identified five key themes: adding burden in seeking medical care, impediments in accessing a readjusted health system, exacerbating vulnerability and distress, coping with self-management and adapting to telehealth. CONCLUSIONS: Patients with CVD expressed an additional burden in seeking medical care and difficulties navigating a readjusted health system during the COVID-19 pandemic. Associated policies and access issues heightened vulnerabilities and distress, making self-management of health difficult for patients with CVD.


Asunto(s)
COVID-19 , Enfermedades Cardiovasculares , Accesibilidad a los Servicios de Salud , Investigación Cualitativa , Humanos , COVID-19/epidemiología , Femenino , Masculino , Enfermedades Cardiovasculares/epidemiología , Estudios Transversales , Australia/epidemiología , Persona de Mediana Edad , Anciano , SARS-CoV-2 , Adulto , Telemedicina/estadística & datos numéricos , Automanejo , Aceptación de la Atención de Salud/estadística & datos numéricos , Pandemias , Adaptación Psicológica
9.
BMC Health Serv Res ; 24(1): 873, 2024 Jul 31.
Artículo en Inglés | MEDLINE | ID: mdl-39085815

RESUMEN

INTRODUCTION: Community-driven research in primary healthcare (PHC) may reduce the chronic disease burden in Indigenous peoples. This systematic review assessed the cultural safety of reports of research on PHC use by Indigenous peoples from four countries with similar colonial histories. METHODS: Medline, CINAHL and Embase were all systematically searched from 1st January 2002 to 4th April 2023. Papers were included if they were original studies, published in English and included data (quantitative, qualitative and/or mixed methods) on primary healthcare use for chronic disease (chronic kidney disease, cardiovascular disease and/or diabetes mellitus) by Indigenous Peoples from Western colonial countries. Study screening and data extraction were undertaken independently by two authors, at least one of whom was Indigenous. The baseline characteristics of the papers were analyzed using descriptive statistics. Aspects of cultural safety of the research papers were assessed using two quality appraisal tools: the CONSIDER tool and the CREATE tool (subset analysis). This systematic review was conducted in accordance with the Assessing the Methodological Quality of Systematic Reviews (AMSTAR) tool. RESULTS: We identified 35 papers from Australia, New Zealand, Canada, and the United States. Most papers were quantitative (n = 21) and included data on 42,438 people. Cultural safety across the included papers varied significantly with gaps in adequate reporting of research partnerships, provision of clear collective consent from participants and Indigenous research governance throughout the research process, particularly in dissemination. The majority of the papers (94%, 33/35) stated that research aims emerged from communities or empirical evidence. We also found that 71.4% (25/35) of papers reported of using strengths-based approaches by considering the impacts of colonization on reduced primary healthcare access. CONCLUSION: Research on Indigenous PHC use should adopt more culturally safe ways of providing care and producing research outputs which are relevant to community needs by privileging Indigenous voices throughout the research process including dissemination. Indigenous stakeholders should participate more formally and explicitly throughout the process to guide research practices, inclusive of Indigenous values and community needs.


Asunto(s)
Pueblos Indígenas , Atención Primaria de Salud , Humanos , Canadá , Servicios de Salud del Indígena , Australia , Nueva Zelanda , Estados Unidos , Competencia Cultural
10.
Kidney Med ; 6(7): 100848, 2024 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-38938646

RESUMEN

Rationale & Objective: In the wake of the coronavirus disease 2019 (COVID-19) pandemic, the United States federal government expanded originating telemedicine sites to include outpatient dialysis units. For the first time, nephrology practitioners across the United States could replace face-to-face visits with telemedicine for patients receiving in-center hemodialysis. This study describes patients' perspectives on the use of telemedicine during in-center hemodialysis. Study Design: A qualitative study. Setting & Participants: Thirty-two patients from underserved populations (older, less educated, unemployed, persons of color) receiving in-center hemodialysis who used telemedicine with their nephrologist during the COVID-19 pandemic. Analytical Approach: Telephone semistructured interviews were conducted in English or Spanish. Transcripts were thematically analyzed. Results: We identified 6 themes with subthemes: adapting to telemedicine (gaining familiarity and confidence, overcoming and resolving technical difficulties, and relying on staff for communication); ensuring availability of the physician (enabling an immediate response to urgent medical needs, providing peace of mind, addressing patient needs adequately, and enhanced attention and contact from physicians); safeguarding against infection (limiting COVID-19 exposures and decreasing use); straining communication and physical interactions (loss of personalized touch, limited physical examination, and unable to reapproach physicians about forgotten issues); maintaining privacy (enhancing privacy and projecting voice enables others to hear); and supporting confidence in telemedicine (requiring established rapport with physicians, clinical stabilty of health, and ability to have in-person visits when necessary). Limitations: Interviews were conducted later in the pandemic when some nephrology care providers were using telemedicine infrequently. Conclusions: Patients receiving in-center hemodialysis adapted to telemedicine visits by their nephrologists in the context of the COVID-19 pandemic and observed its benefits. However, further considerations regarding communication, privacy, and physical assessments are necessary. Integrating telemedicine into future in-center hemodialysis care using a hybrid approach could potentially build trust, optimize communication, and augment care.


This study describes patients' perspectives on the use of telemedicine while receiving in-center hemodialysis during the coronavirus disease 2019 (COVID-19) pandemic. Data are derived from semistructured interviews with thirty-two patients from underserved populations (older, less educated, unemployed, persons of color). We identified 6 major themes including adapting to telemedicine, ensuring availability of the physicians, safeguarding against infection, straining communication and physical interactions, maintaining privacy, and supporting confidence in telemedicine. These findings suggest that patients receiving in-center hemodialysis adapted to telemedicine visits by their nephrologists in the context of the COVID-19 pandemic and observed its benefits. However, further considerations regarding communication, privacy, and physical assessments are necessary. Integrating telemedicine into future in-center hemodialysis care using a hybrid approach could potentially build trust, optimize communication, and augment care.

11.
Am J Kidney Dis ; 84(4): 482-494, 2024 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-38810688

RESUMEN

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.


Asunto(s)
Cuidadores , Participación del Paciente , Insuficiencia Renal Crónica , Humanos , Cuidadores/psicología , Insuficiencia Renal Crónica/terapia , Insuficiencia Renal Crónica/psicología , Australia , Investigación Biomédica Traslacional , Investigación Biomédica
13.
J Clin Epidemiol ; 170: 111330, 2024 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-38537911

RESUMEN

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.


Asunto(s)
Participación de la Comunidad , Guías de Práctica Clínica como Asunto , Insuficiencia Renal Crónica , Humanos , Pueblos de Australasia , Australia , Participación de la Comunidad/métodos , Difusión de la Información/métodos , Nueva Zelanda , Insuficiencia Renal Crónica/terapia
14.
BMJ Open ; 14(3): e082184, 2024 Mar 11.
Artículo en Inglés | MEDLINE | ID: mdl-38471683

RESUMEN

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.


Asunto(s)
Nefrólogos , Diálisis Peritoneal , Humanos , Diálisis Renal/métodos , Investigación Cualitativa , Comunicación
15.
Semin Nephrol ; 44(1): 151499, 2024 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-38538454

RESUMEN

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.


Asunto(s)
Trasplante de Riñón , Neoplasias , Medición de Resultados Informados por el Paciente , Atención Dirigida al Paciente , Calidad de Vida , Humanos , Neoplasias/cirugía , Fallo Renal Crónico/cirugía , Fallo Renal Crónico/complicaciones , Toma de Decisiones Conjunta
16.
Aust N Z J Public Health ; 48(2): 100131, 2024 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-38422583

RESUMEN

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.


Asunto(s)
Pueblos de Australasia , Cuidadores , Política de Salud , Accesibilidad a los Servicios de Salud , Servicios de Salud del Indígena , Nativos de Hawái y Otras Islas del Pacífico , Insuficiencia Renal Crónica , Población Rural , Humanos , Australia , Insuficiencia Renal Crónica/terapia , Insuficiencia Renal Crónica/etnología , Servicios de Salud del Indígena/organización & administración , Disparidades en Atención de Salud/etnología
17.
Kidney Int Rep ; 9(1): 87-95, 2024 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-38312789

RESUMEN

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.

19.
Adv Kidney Dis Health ; 31(1): 52-67, 2024 01.
Artículo en Inglés | MEDLINE | ID: mdl-38403395

RESUMEN

Patient involvement in research can improve the relevance of research, consequently enhancing the recruitment, retention, and uptake of interventions and policies impacting patient outcomes. Despite this, patients are not often involved in the design and conduct of research. The research agenda and innovations are frequently determined by the interest of health and industry professionals rather than proactively aligning with the priorities of patients. It is now being encouraged and recommended to engage patients in research priority setting to ensure interventions and trials report outcomes valuable to patients, moving away from a history of overlooking the outcomes that reflect the feel and function of patients. Involving patients ensures constant innovative research in nephrology, as this broader depth of evidence fortifies reliability and validity through knowledge gained from lived experience. Findings from such research can enhance clinical practice and strengthen decision-making and policy to support better outcomes. We aim to outline principles and strategies for patient involvement in research, including setting research priorities, identifying and designing interventions, selecting outcomes, and disseminating and translating research. Principles and strategies including engagement, education and training, empowerment, and connection and community provide guidance in patient involvement. There are increasing efforts to involve patients across all stages of research including setting research priorities. Efforts are rising to involve patients across all stages of research including priority setting, identifying and designing interventions, selecting outcomes, and dissemination and translation. Patient involvement throughout the research cycle drives innovative investigations ensuring funding, efforts, and resources are directed toward priorities of patients, contributing to catalyst advancements in care and outcomes.


Asunto(s)
Nefrología , Humanos , Reproducibilidad de los Resultados , Pacientes , Atención Dirigida al Paciente
20.
J Hypertens ; 42(5): 848-855, 2024 May 01.
Artículo en Inglés | MEDLINE | ID: mdl-38230619

RESUMEN

OBJECTIVE: Hypertension affects 50-90% of kidney transplant recipients and is associated with cardiovascular disease and graft loss. We aimed to evaluate the comparative benefits and harms of blood pressure lowering agents in people with a functioning kidney transplant. METHODS: We conducted a systematic review with network meta-analysis of randomized controlled trials (RCTs). We searched MEDLINE, Embase, and CENTRAL through to October 2023. RCTs evaluating blood pressure lowering agents administered for at least 2 weeks in people with a functioning kidney transplant with and without preexisting hypertension were eligible. Two reviewers independently extracted data. The primary outcome was graft loss. Treatment effects were estimated using random effects network meta-analysis, with treatment effects expressed as an odds ratio (OR) for binary outcomes and mean difference (MD) for continuous outcomes together with their 95% confidence interval (CI). Confidence in the evidence was assessed using GRADE for network meta-analysis. RESULTS: Ninety-four studies (7547 adults) were included. Two studies were conducted in children. No blood pressure-lowering agent reduced the risk of graft loss, withdrawal because of adverse events, death, cardiovascular or kidney outcomes compared with placebo/other drug class. Angiotensin-converting enzyme inhibitors and angiotensin receptor blocker therapy may incur greater odds of hyperkalemia compared with calcium channel blockers [odds ratio (OR) 5.48, 95% confidence interval (CI) 2.47-12.16; and OR 8.67, 95% CI 2.65-28.36; low certainty evidence, respectively). CONCLUSION: The evidentiary basis for the comparative benefits and safety of blood pressure lowering agents in people with a functioning kidney transplant is limited to guide treatment decision-making.


Asunto(s)
Hipertensión , Trasplante de Riñón , Niño , Adulto , Humanos , Presión Sanguínea , Trasplante de Riñón/efectos adversos , Metaanálisis en Red , Hipertensión/tratamiento farmacológico , Inhibidores de la Enzima Convertidora de Angiotensina/uso terapéutico
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