Experiences of living kidney donors: A synthesis of unsolicited patient narratives.

INTRODUCTION: Despite the lauded benefits of living kidney donation, there is growing evidence of the challenges that living kidney donors (LKD) encounter in their donation trajectory and gaps in healthcare service provision. However, most of the evidence is derived from research conducted by clinicians or academic investigators. Significantly less attention has been devoted to analyzing unsolicited accounts of LKDs' experiences. METHODS: We conducted a review and synthesis of published unsolicited first-person narratives of LKDs and aimed to synthesize their experiences and identify care needs. Four electronic databases were searched and 27 LKD narratives were included in our final analysis. Thematic synthesis was used to generate themes inductively. RESULTS: Although the majority of LKDs reported the act of donation to be a fulfilling experience, almost 48% reported encountering challenges in the care that they received. Also, 29% of LKDs reported experiencing an adverse clinical event. Five distinct themes emerged surrounding the donation experience and healthcare needs: 1) Educational needs due to perceived lack of transparency and compensating for knowledge gaps; 2) Respect for donor autonomy due to coercive influences from family or healthcare providers, lack of respect for donor preferences and loopholes in the consent process; 3) Unmet care needs related to poor communication with healthcare providers, coordination issues and inconsistent and inadequate long-term care; 4) Unanticipated outcomes due to economic costs and the emotional burden of donation; and 5) Contributing beyond the donation event by advocating for a balanced view of donation and generating support mechanisms. CONCLUSION: In this synthesis of LKDs narratives, important care gaps and the need to advocate for a balanced perspective on living kidney donation were highlighted. Our review underscores the value of patients' own stories as critical evidence that can inform improvement in healthcare service delivery.

From patient-reported outcomes (PROs) to family-reported outcomes (FROs): Acceptability and perceived usefulness of routine screening in cancer care.

OBJECTIVES: To explore the acceptability of screening for family-reported outcomes (FROs) among cancer caregivers (unpaid family members or friends who provide support to patients with cancer) and identify from their perspective the key components of a FRO screening program. METHODS: Using a qualitative descriptive design, semi-structured interviews were undertaken with 23 adult caregivers of people with cancer between 2020 and 2021. Interview questions focused on acceptability of FRO screening, types of FROs, timing/frequency of screening, preferred resources following screening, and communication of FROs to patients and clinicians. Participants were recruited in Canada. Interviews were audio-recorded, transcribed verbatim, and analyzed using thematic analysis and constant comparison. RESULTS: Almost all caregivers welcomed FRO screening in usual care and viewed it as an avenue toward obtaining more resources. Other potential benefits of FRO screening included increased self-reflection and role acknowledgment. Caregivers prioritized screening for emotional symptoms, and most preferred that the results be shared with the patient's treating team rather than their primary care provider. Caregivers did not want results to be shared with patients, instead favoring learning how best to discuss results with patients. Many spoke of a "one stop shop" containing all relevant information on caring for the patient (first) and for themselves (second). Opinions regarding timing and frequency of FRO screening differed. Periodic administration of FRO measures, with each one not exceeding 20 minutes, was deemed appropriate. SIGNIFICANCE OF RESULTS: This study extends the concept of patient-reported outcome measures to caregivers, and findings can be used to guide the development of FRO screening programs.

Are Differences in Living Kidney Donation Rates a Sex or a Gender Disparity?

Sex-disaggregated data reveal significant disparities in living kidney donation, with more female than male living kidney donors in most countries and proportions over 60% in some countries. We summarize the present state of knowledge with respect to the potential drivers of this disparity and argue that it is primarily driven by gender-related factors. First, we present the differences between sex and gender and then proceed to summarize the potential medical reasons that have been proposed to explain why males are less likely to be living kidney donors than females, such as the higher prevalence of kidney failure in males. We then present counterarguments as to why biological sex differences are not enough to explain lower living kidney donation among males, such as a higher prevalence of chronic kidney disease among females, which could affect donation rates. We argue that gender differences likely provide a better explanation as to why there are more women than men living kidney donors and explore the role of economic and social factors, as well as gender roles and expectations, in affecting living kidney donation among both men and women. We conclude with the need for a gender analysis to explain this complex psychosocial phenomenon in living kidney donation.

Electronic health record and primary care physician self-reported quality of care: a multilevel study in China.

BACKGROUND: Health information technology is one of the building blocks of a high-performing health system. However, the evidence regarding the influence of an electronic health record (EHR) on the quality of care remains mixed, especially in low- and middle-income countries. OBJECTIVE: This study examines the association between greater EHR functionality and primary care physician self-reported quality of care. METHODS: A total of 224 primary care physicians from 38 community health centres (CHCs) in four large Chinese cities participated in a cross-sectional survey to assess CHC care quality. Each CHC director scored their CHC's EHR functionality on the availability of ten typical features covering health information, data, results management, patient access, and clinical decision support. Data analysis utilised hierarchical linear modelling. RESULTS: The availability of five EHR features was positively associated with physician self-reported clinical quality: share records online with providers outside the practice (ß = 0.276, p = 0.04), access records online by the patient (ß = 0.325, p = 0.04), alert provider of potential prescription problems (ß = 0.353, p = 0.04), send the patient reminders for care (ß = 0.419, p = 0.003), and list patients by diagnosis or health risk (ß = 0.282, p = 0.04). However, no association was found between specific features availability or total features score and physician self-reported preventive quality. CONCLUSIONS: This study provides evidence that the availability of EHR systems, and specific features of these systems, was positively associated with physician self-reported quality of care in these 38 CHCs. Future longitudinal studies focused on standardised quality metrics, and designed to control known confounding variables, will further inform quality improvement efforts in primary care.

High performing primary health care organizations from patient perspective: a qualitative study in China.

BACKGROUND: There is a global call to build people-centred primary health care (PHC) systems. Previous evidence suggests that without organization-level reform efforts, the full potential of policy reforms may be limited. This study aimed to generate a profile of high performing PHC organizations from the perspective of patients. METHODS: We conducted semi-structured interviews with 58 PHC users from six provinces (Shandong, Zhejiang, Shaanxi, Henan, Shanxi, Heilongjiang) in China using purposive and snowball sampling techniques. Transcription was completed by trained research assistants through listening to the recordings of the interviews and summarizing them in English by 30-s segments to generate the narrative summary. Informed by the Classification System of PHC Organizational Attributes, thematic analysis aimed to identify domains and attributes of high performing PHC organizations. RESULTS: A profile of a high performing PHC organization with five domains and 14 attributes was generated. The five domains included: (1) organizational resources including medical equipment, human and information resource; (2) service provision and clinical practice including practice scope, internal integration and external integration; (3) general features including location, environment and ownership; (4) quality and cost; and (5) organizational structure including continuous learning mechanism, administrative structure and governance. CONCLUSIONS: A five-domain profile of high performing PHC organizations from the perspective of Chinese PHC users was generated. Organizational resources, service delivery and clinical practices were most valued by the participants. Meanwhile, the participants also had strong expectation of geographical accessibility, high quality of care as well as efficient organizational structure. These organizational elements should be reflected in further reform efforts in order to build high performing PHC organizations.

Long-term Care of Living Kidney Donors Needs a Better Model of Healthcare Delivery.

Every year, over 30,000 healthy individuals globally donate a kidney to a patient with kidney failure. These living kidney donors are at higher risk of some medical complications post-donation when compared with matched controls. Although the absolute risk of these complications is low, appropriate long-term care is essential to allow early detection and timely interventions. Some transplant centers follow living donors long-term, but many recommend that donors regularly see a primary care practitioner post-donation. However, primary care is currently not integrated with transplant centers, and the two often work in silos with little to no channels of communication with each other. As this model of care is suboptimal, existing evidence suggests that post-donation care and follow-up are inadequate. We argue for an integrated model of living donor care with stronger continuity and coordination between primary care and transplant centers that are developed with the input of all relevant stakeholders.

Perspectives and experiences of kidney transplant recipients with graft failure: A systematic review and meta-synthesis.

BACKGROUND: Kidney transplant recipients with graft failure are a rapidly rising cohort of patients who experience high morbidity, mortality, and fragmented transitions of care between transplant and dialysis teams. Current approaches to improving care focus on medical and surgical interventions, increasing re-transplantation, and improving coordination between treating teams with little understanding of patient needs and perspectives. METHODS: We undertook a systematic literature review of personal experiences of patients with graft failure. Six electronic and five grey literature databases were searched systematically. Of 4664 records screened 43 met the inclusion criteria. Six empirical qualitative studies and case studies were included in the final analysis. Thematic synthesis was used to combine data that included the perspectives of 31 patients with graft failure and 9 caregivers. RESULTS: Using the Transition Model, we isolated three interconnected phases as patients transition through graft failure: shattering of lifestyle and plans associated with a successful transplant; physical and psychological turbulence; and re-alignment by learning adaptive strategies to move forward. Critical factors affecting coping included multi-disciplinary healthcare approaches, social support, and individual-level factors. While clinical transplant care was evaluated positively, participants identified gaps in the provision of information and psychosocial support related to graft failure. Graft failure had a profound impact on caregivers especially when they were living donors. CONCLUSIONS: Our review reports patient-identified priorities for improving care and can help inform research and guideline development that strives to improve the care of patients with graft failure.

Health System-Level Barriers to Living Donor Kidney Transplantation: Protocol for a Comparative Case Study Analysis.

BACKGROUND: Living donor kidney transplantation (LDKT) is the best treatment option for patients with kidney failure and offers significant medical and economic advantages for both patients and health systems. Despite this, rates of LDKT in Canada have stagnated and vary significantly across Canadian provinces, the reasons for which are not well understood. Our prior work has suggested that system-level factors may be contributing to these differences. Identifying these factors can help inform system-level interventions to increase LDKT. OBJECTIVE: Our objective is to generate a systemic interpretation of LDKT delivery across provincial health systems with variable performance. We aim to identify the attributes and processes that facilitate the delivery of LDKT to patients, and those that create barriers and compare these across systems with variable performance. These objectives are contextualized within our broader goal of increasing rates of LDKT in Canada, particularly in lower-performing provinces. METHODS: This research takes the form of a qualitative comparative case study analysis of 3 provincial health systems in Canada that have high, moderate, and low rates of LDKT performance (the percentage of LDKT to all kidney transplantations performed). Our approach is underpinned by an understanding of health systems as complex adaptive systems that are multilevel and interconnected, and involve nonlinear interactions between people and organizations, operating within a loosely bounded network. Data collection will comprise semistructured interviews, document reviews, and focus groups. Individual case studies will be conducted and analyzed using inductive thematic analysis. Following this, our comparative analysis will operationalize resource-based theory to compare case study data and generate explanations for our research question. RESULTS: This project was funded from 2020 to 2023. Individual case studies were carried out between November 2020 and August 2022. The comparative case analysis will begin in December 2022 and is expected to conclude in April 2023. Submission of the publication is projected for June 2023. CONCLUSIONS: By investigating health systems as complex adaptive systems and making comparisons across provinces, this study will identify how health systems can improve the delivery of LDKT to patients with kidney failure. Our resource-based theory framework will provide a granular analysis of the attributes and processes that facilitate or create barriers to LDKT delivery across multiple organizations and levels of practice. Our findings will have practice and policy implications and help inform transferrable competencies and system-level interventions conducive to increasing LDKT. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/44172.

Living Donor Kidney Transplantation in Quebec: A Qualitative Case Study of Health System Barriers and Facilitators.

Background: Patients with kidney failure represent a major public health burden, and living donor kidney transplantation (LDKT) is the best treatment option for these patients. Current work to optimize LDKT delivery to patients has focused on microlevel interventions and has not addressed interdependencies with meso and macro levels of practice. Objective: We aimed to learn from a health system with historically low LDKT performance to identify facilitators and barriers to LDKT. Our specific aims were to understand how LDKT delivery is organized through interacting macro, meso, and micro levels of practice and identify what attributes and processes of this health system facilitate the delivery of LDKT to patients with kidney failure and what creates barriers. Design: We conducted a qualitative case study, applying a complex adaptive systems approach to LDKT delivery, that recognizes health systems as being made up of dynamic, nested, and interconnected levels, with the patient at its core. Setting: The setting for this case study was the province of Quebec, Canada. Participants: Thirty-two key stakeholders from all levels of the health system. This included health care professionals, leaders in LDKT governance, living kidney donors, and kidney recipients. Methods: Semi-structured interviews with 32 key stakeholders and a document review were undertaken between February 2021 and December 2021. Inductive thematic analysis was used to generate themes. Results: Overall, we identified strong links between system attributes and processes and LDKT delivery, and more barriers than facilitators were discerned. Barriers that undermined access to LDKT included fragmented LDKT governance and expertise, disconnected care practices, limited resources, and regional inequities. Some were mitigated to an extent by the intervention of a program launched in 2018 to increase LDKT. Facilitators driven by the program included advocacy for LDKT from individual member(s) of the care team, dedicated resources, increased collaboration, and training opportunities that targeted LDKT delivery at multiple levels of practice. Limitations: Delineating the borders of a "case" is a challenge in case study research, and it is possible that some perspectives may have been missed. Participants may have produced socially desirable answers. Conclusions: Our study systematically investigated real-world practices as they operate throughout a health system. This novel approach has cross-disciplinary methodological relevance, and our findings have policy implications that can help inform multilevel interventions to improve LDKT.

Contexte: Les patients atteints d'insuffisance rénale représentent un lourd fardeau pour la santé publique, et la transplantation rénale provenant d'un donneur vivant (TRDV) est la meilleure option de traitement pour ces patients. Les travaux actuels visant à optimiser la TRDV chez les patients ont été limités à des interventions de niveau micro et n'ont pas abordé les interdépendances avec les niveaux méso et macro de la pratique. Objectifs: Notre objectif était d'apprendre d'un système de santé présentant un taux historiquement bas de TRDV pour arriver à déterminer les facteurs qui constituent un facilitateur ou un frein à la TRDV. Plus précisément, nous souhaitions, par le biais d'interactions entre les niveaux macro, méso et micro de la pratique, comprendre la façon dont la TRDV est organisée. Nous souhaitions également déterminer quels attributs et processus du système de santé constituent des facilitateurs ou des freins à la TRDV pour les patients atteints d'insuffisance rénale. Conception: Nous avons appliqué une approche de systèmes adaptatifs complexes à la TRDV pour mener une étude de cas qualitative qui reconnaît que les systèmes de santé sont constitués de niveaux dynamiques, imbriqués et interconnectés, où le patient est au cœur des interventions. Cadre: Cette étude de cas avait pour cadre la province de Québec (Canada). Participants: 32 intervenants clés de tous les niveaux du système de santé, notamment des professionnels de la santé, des leaders impliqués dans la gestion de la TRDV, des donneurs vivants d'un rein et des receveurs de rein. Méthodologie: Des entrevues semi-structurées avec 32 intervenants clés et un examen des documents ont été entrepris entre février 2021 et décembre 2021. L'analyse thématique inductive a servi à générer les thèmes. Résultats: De façon générale, nous avons constaté qu'il existait des liens solides entre la TRDV et les attributs et processus du système, et que les obstacles étaient plus nombreux que les facilitateurs. Les obstacles freinant l'accès à la TRDV comprenaient la gouvernance et l'expertise fragmentées en lien avec la TRDV, les pratiques de soins déconnectées, les ressources limitées et les inégalités régionales. Certains de ces obstacles ont été atténués dans une certaine mesure par l'intervention d'un programme lancé en 2018 pour accroître la TRDV. Les facilitateurs soutenus par le programme comprenaient la promotion de la TRDV par des membres individuels de l'équipe de soins, la disponibilité de ressources dédiées, une collaboration accrue et les possibilités de formation ciblant la TRDV à plusieurs niveaux de pratique. Limites: La délimitation des frontières de ce que constitue un « cas ¼ est un défi dans la recherche d'études de cas; il est ainsi possible que certaines perspectives aient été manquées. Les participants pourraient avoir donné des réponses socialement souhaitables. Conclusion: Notre étude a examiné systématiquement les pratiques en contexte réel, tel qu'elles fonctionnent dans l'ensemble d'un système de santé. Cette nouvelle approche présente une pertinence méthodologique interdisciplinaire et nos conclusions ont des implications politiques qui pourraient aider à orienter des interventions à plusieurs niveaux pour améliorer la TRDV.

Determinants of choice of usual source of care among older people with cardiovascular diseases in China: evidence from the Study on Global Ageing and Adult Health.

BACKGROUND: Cardiovascular diseases (CVD) are emerging as the leading contributor to death globally. The usual source of care (USC) has been proven to generate significant benefits for the elderly with CVD. Understanding the choice of USC would generate important knowledge to guide the ongoing primary care-based integrated health system building in China. This study aimed to analyze the individual-level determinants of USC choices among the Chinese elderly with CVD and to generate two exemplary patient profiles: one who is most likely to choose a public hospital as the USC, the other one who is most likely to choose a public primary care facility as the USC. METHODS: This study was a secondary analysis using data from the World Health Organization's Study on Global AGEing and Adult Health (SAGE) Wave 1 in China. 3,309 individuals aged 50 years old and over living with CVD were included in our final analysis. Multivariable logistic regression was built to analyze the determinants of USC choice. Nomogram was used to predict the probability of patients' choice of USC. RESULTS: Most of the elderly suffering from CVD had a preference for public hospitals as their USC compared with primary care facilities. The elderly with CVD aged 50 years old, being illiterate, residing in rural areas, within the poorest income quintile, having functional deficiencies in instrumental activities of daily living and suffering one chronic condition were found to be more likely to choose primary care facilities as their USC with the probability of 0.85. Among those choosing primary care facilities as their USC, older CVD patients with the following characteristics had the highest probability of choosing public primary care facilities as their USC, with the probability of 0.77: aged 95 years old, being married, residing in urban areas, being in the richest income quintile, being insured, having a high school or above level of education, and being able to manage activities living. CONCLUSIONS: Whilst public primary care facilities are the optimal USC for the elderly with CVD in China, most of them preferred to receive health care in public hospitals. This study suggests that the choice of USC for the elderly living with CVD was determined by different individual characteristics. It provides evidence regarding the choice of USC among older Chinese patients living with CVD.