Patient Perspectives of Center-Specific Reporting in Kidney Failure Care: An Australian Qualitative Study.

Introduction: Public reporting of quality of care indicators in healthcare is intended to inform consumer decision-making; however, people may be unaware that such information exists, or it may not capture their priorities. The aim of this study was to understand the views of people with kidney disease about public reporting of dialysis and transplant center outcomes. Methods: This qualitative study involved 27 patients with lived experience of kidney disease in Australia who participated in 11 online focus groups between August and December 2022. Transcripts were analyzed thematically. Results: Patients from all Australian states and territories participated, with 22 (81%) having a functioning kidney transplant and 22 (81%) having current or previous experience of dialysis. Five themes were identified as follows: (i) surrendering to the health system, (ii) the complexity of quality, (iii) benefits for patient care and experience, (iv) concerned about risks and unintended consequences, and (v) optimizing the impact of data. Conclusion: Patients desire choice among kidney services but perceive this as rarely possible in the Australian context. Health professionals are trusted to make decisions about appropriate centers. Public reporting of center outcomes may induce fear and a loss of balanced perspective; however, it was supported by all participants and represents an opportunity for self-advocacy and informed decision-making. Strategies to mitigate potential risks include availability of trusted clinicians and community members to aid in data interpretation, providing context about centers and patients, and framing statistics to promote positivity and hope.

Improving Diverse and Equitable Involvement of Patients and Caregivers in Research in CKD: Report of a Better Evidence and Translation - Chronic Kidney Disease (BEAT-CKD) Workshop.

Patient and caregiver involvement can enhance the uptake and impact of research, however, 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 CKD and caregivers is needed. We conducted a national workshop involving patients, caregivers, clinicians and researchers 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 andsupport 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.

Dialysis Needle-Related Distress: Patient Perspectives on Identification, Prevention, and Management.

Introduction: Needle-related distress is common among people receiving hemodialysis and affects quality of life and treatment decisions, yet little evidence exists to guide management. This study explored patients' experiences of needle-related distress to inform the development of prevention, identification, and management strategies. Methods: Semistructured interviews concerning dialysis cannulation, needle-related distress, and potential solutions were conducted with people with current or recent experience of hemodialysis (N = 15) from a tertiary hospital-based service. Interviews ceased at thematic saturation. Transcripts were analyzed thematically. Results: There were 4 themes and 11 subthemes generated: (i) uncovering a hidden source of distress (dismissal and minimization by others; suffering in silence to stay alive; preparation, assessment, and education); (ii) coping with cannulation pain and trauma (interaction between physical damage, pain, and distress; operator dependency-the importance of nurse skill and technique); (iii) the environment created by dialysis nurses (emotional transference; communication during cannulation; valuing empathy and person-centered care; a psychosocially supportive dialysis unit); and (iv) supporting patient self-management of distress (accessing tools to help themselves; distraction to reduce distress). Conclusion: Needle-related distress is an often-hidden element of the hemodialysis experience. Patients learn to tolerate it as an inevitable part of dialysis for survival. Nurses' technical skills and the dialysis environment they create are key determinants of the patient cannulation experience. Proposed solutions include psychological screening, education for patients to self-manage distress, and training for nurses in communication and providing relevant psychological support.

Nephrology nurses' perspectives working with patients experiencing needle-related distress.

BACKGROUND: A key skill of nephrology nursing is cannulation of patients receiving haemodialysis. Traumatic and unsuccessful cannulation experiences, particularly in the initial weeks of haemodialysis, may contribute to the onset of needle distress for patients. OBJECTIVES: To identify the key knowledge, skills and attitudes of nephrology nurses working with haemodialysis patients and the competencies relevant to nephrology nursing working with patients with needle-related distress. DESIGN: A qualitative study involving semistructured interviews. Interviews were audio-recorded, transcribed and deductive, and inductive thematic analysis applied. PARTICIPANTS: Nephrology nurses (n = 17) were interviewed from a tertiary kidney service in South Australia. Nurses had varying roles and years of experience (range 1-30 years) working with dialysis patients within the service. RESULTS: Two overarching themes, (1) Flexibility in Practice and Care and (2) Responsibility of Nephrology Nursing, were identified as relevant across all knowledge, skills and attitudes of nephrology nurses working with patients with needle-related distress. Thirty-six knowledge, skills and attitudes were identified; 12 related to knowledge, 14 related to skills and 10 were identified as attitudes and were summarised under seven broad competencies. CONCLUSION: This study identifies potential knowledge, skills and attitudes and competencies required for nephrology nurses working with patients with needle-related distress. It highlights strategies that may prevent the onset and worsening of needle-related distress, as well as reduce it. It also brings to light that nurses desire additional education regarding strategies to improve the patient experience of cannulation and nurse confidence and skill in this area.

How Can Nurses Support Patients on Hemodialysis Who Experience Needle Fear? An Online Educational Intervention for Nephrology Nurses.

Nephrology nurses struggle to support patients on hemodialysis who experience needle fear due to absence of adequate programs or guidelines. Therefore, we have designed an educational intervention for nurses to learn techniques and strategies to support patients with needle fear and review best cannulation practices with minimal trauma to improve patients' experience of dialysis. A pre-post design measured self-reported confidence in nurses' ability to support patients on dialysis who have a fear of needles. We found nurses can benefit from targeted educational interventions that provide information and strategies regarding needle fear management. Findings from this study have a potential to be transferred to other chronic disease settings with frequent needle use.

The impact on patients of the tertiary-primary healthcare interface in kidney failure: a qualitative study.

BACKGROUND: Clinicians and patients have reported fragmentation in the primary and tertiary healthcare interface. However, perspectives of service navigation and the impacts of fragmentation are not well defined, particularly for patients transitioning to dialysis. This study aimed to define patient perspectives of the functioning of the health service interface and impacts on healthcare experiences and engagement, informing patient-centred and outcomes-focused service models. METHODS: A qualitative study was conducted through semi-structured interviews with 25 dialysis patients (16 males) aged 34-78 receiving dialysis across a multi-site tertiary service. Transcripts were analysed thematically. RESULTS: Three main themes were identified: (1) The Changing Nature of General Practitioner (GP) Patient Relationships; (2) Ownership and Leadership in Kidney Care; and (3) The Importance of Nephrologist-GP Communications. Patients perceived an unreliable primary-tertiary service interface which lacked coordinated care and created challenges for primary care continuity. These impacted perceptions of healthcare provider expertise and confidence in healthcare systems. Patients subsequently increased the healthcare sought from tertiary kidney clinicians. The fractured interface led some to coordinate communication between health sectors, to support care quality, but this caused additional stress. CONCLUSIONS: A fragmented primary-tertiary healthcare interface creates challenges for patient service navigation and can negatively impact patient experiences, leading to primary care disengagement, reduced confidence in health care quality and increased stress. Future studies are imperative for assessing initiatives facilitating health system integration, including communication technologies, healthcare provider training, patient empowerment, and specific outcomes in health, economic and patient experience measures, for patients transitioning to dialysis.

Sudden cardiac death in the young: A consensus statement on recommended practices for cardiac examination by pathologists from the Society for Cardiovascular Pathology.

Sudden cardiac death is, by definition, an unexpected, untimely death caused by a cardiac condition in a person with known or unknown heart disease. This major international public health problem accounts for approximately 15-20% of all deaths. Typically more common in older adults with acquired heart disease, SCD also can occur in the young where the cause is more likely to be a genetically transmitted process. As these inherited disease processes can affect multiple family members, it is critical that these deaths are appropriately and thoroughly investigated. Across the United States, SCD cases in those less than 40 years of age will often fall under medical examiner/coroner jurisdiction resulting in scene investigation, review of available medical records and a complete autopsy including toxicological and histological studies. To date, there have not been consistent or uniform guidelines for cardiac examination in these cases. In addition, many medical examiner/coroner offices are understaffed and/or underfunded, both of which may hamper specialized examinations or studies (e.g., molecular testing). Use of such guidelines by pathologists in cases of SCD in decedents aged 1-39 years of age could result in life-saving medical intervention for other family members. These recommendations also may provide support for underfunded offices to argue for the significance of this specialized testing. As cardiac examinations in the setting of SCD in the young fall under ME/C jurisdiction, this consensus paper has been developed with members of the Society of Cardiovascular Pathology working with cardiovascular pathology-trained, practicing forensic pathologists.

Autopsy Histopathologic Cardiac Findings in 2 Adolescents Following the Second COVID-19 Vaccine Dose.

CONTEXT.­: Myocarditis in adolescents has been diagnosed clinically following the administration of the second dose of an mRNA vaccine for coronavirus disease 2019 (COVID-19). OBJECTIVE.­: To examine the autopsy microscopic cardiac findings in adolescent deaths that occurred shortly following administration of the second Pfizer-BioNTech COVID-19 dose to determine if the myocarditis described in these instances has the typical histopathology of myocarditis. DESIGN.­: Clinical and autopsy investigation of 2 teenage boys who died shortly following administration of the second Pfizer-BioNTech COVID-19 dose. RESULTS.­: The microscopic examination revealed features resembling a catecholamine-induced injury, not typical myocarditis pathology. CONCLUSIONS.­: The myocardial injury seen in these postvaccine hearts is different from typical myocarditis and has an appearance most closely resembling a catecholamine-mediated stress (toxic) cardiomyopathy. Understanding that these instances are different from typical myocarditis and that cytokine storm has a known feedback loop with catecholamines may help guide screening and therapy.

Using an international online forum to explore perspectives of caregivers of patients with chronic kidney disease.

BACKGROUND: Caregivers of patients with chronic kidney disease (CKD) experience significant burden of care. Online forums provide an important platform for peer connection and expression of perspectives and concerns, but have not been used to capture consumer experiences in CKD research. Social support can improve caregivers' quality of life, with emerging research exploring online social support. METHOD: This study employed qualitative content analysis to examine 159 posts on an online international forum: Caregivers of Patients with Kidney Disease to examine the experiences and concerns raised by caregivers of patients with CKD. Posts were coded using verbatim words and phrases, then arranged into three overarching themes, 12 categories and 71 sub-categories. RESULTS: The overarching themes were Impact to Carer Wellbeing; Use of Online Social Support; Caregiver Knowledge. Online posts highlighted the psychological and physical challenges for caregivers of patients with CKD including social isolation, helplessness and the impact to paid employment. Participants used online social support to connect with peers and seek advice from the forum community on topics including: the patient's diet; clinical management; CKD symptoms; and how to support the patient to adhere to diet and medications. CONCLUSION: This study provides valuable insight into gaps in caregiver knowledge and their need to seek online peer support. Caregiver forums can inform support strategies from healthcare professionals to increase caregiver involvement in treatment and education options, as well as tangible assistance to support caregivers' and patients' needs, such as transportation services for dialysis patients.

Perspectives of Patients, Nurses, and Nephrologists About Electronic Symptom Monitoring With Feedback in Hemodialysis Care.

RATIONALE & OBJECTIVE: Patients receiving hemodialysis experience high symptom burden and low quality of life (QOL). Electronic patient-reported outcome measures (e-PROMs) monitoring with feedback to clinicians may be an acceptable intervention to improve health-related QOL for patients receiving hemodialysis. This study explored patient and clinician perspectives on e-PROMs monitoring with feedback to clinicians. STUDY DESIGN: Qualitative study. SETTING & PARTICIPANTS: 41 participants (12 patients, 13 nephrologists, 16 dialysis nurses) who participated in a 6-month feasibility pilot study of adults receiving facility-based hemodialysis across 4 Australian units. The intervention consisted of electronic symptom monitoring with feedback to clinicians, who also received evidence-based symptom management recommendations to improve health-related QOL. ANALYTICAL APPROACH: Semistructured interviews and focus group discussions explored the feasibility and acceptability of e-PROMs monitoring with feedback to clinicians. We conducted a thematic analysis of transcripts. RESULTS: We identified 4 themes: enabling efficient, systematic, and multidisciplinary patient-centered care; experiencing limited data and options for symptom management; requiring familiarity with technology and processes; and identifying barriers and competing priorities. While insufficient patient engagement, logistic/technical challenges, and delayed symptom feedback emerged as barriers to implementation, active engagement by nurses in encouraging and supporting patients during survey completion and clinicians' prompt action after symptom feedback were considered to be facilitators to implementation. LIMITATIONS: Limited generalizability due to inclusion of English-speaking participants only. CONCLUSIONS: Patients, nurses, and nephrologists considered e-PROMs monitoring with feedback to clinicians feasible for symptom management in hemodialysis. Clinician engagement, patient support, reliable technology, timely symptom feedback, and interventions to address symptom burden are likely to improve its implementation within research and clinical settings.

Patient perspectives of coping with automated peritoneal dialysis.

BACKGROUND: Patients receiving peritoneal dialysis (PD) experience poor quality of life, depression, anxiety and lifestyle changes. Insights into how patients adjust to and cope with PD from a psychological perspective will aid care. METHODS: Participants were recruited purposively through the Central Northern Adelaide Renal and Transplantation Service in South Australia. Ten patients receiving automated PD (APD) (5 females and 5 males) aged 31 to 77 years (M = 59.3) participated in a semi-structured interview. Interview transcripts were analysed thematically through inductive and deductive methods. RESULTS: Five main themes representing participants' experiences and perspectives of adjusting to and coping with APD were identified: (1) Resigned Acceptance, (2) A Bridge to Transplant, (3) Navigating Emotions at Milestones and Transitions, (4) Professional Support (Sub-themes: Psychological Support and Education and Information Delivery and (5) Social Enablers (Sub-theme: Hidden from View and Hiding Illness). CONCLUSIONS: Patients employ cognitive, emotional and behavioural strategies and rely strongly on social supports to cope with APD. PD at home aids preservation of pre-illness identity, however, also results in feelings of isolation and being misunderstood. Psychological distress and poor coping may be heightened at key disease milestones and transition periods when professional psychological support should be offered. We provide suggestions to address patients' psychosocial needs and coping in treatment decision-making and dialysis care.

A qualitative content analysis of an online forum for people with kidney disease: Exploring the role of companion and non-companion animals.

BACKGROUND: Companion and other animals have been known to promote wellbeing of people living with chronic disease by assisting in emotional regulation, social interaction and enhancing self-identity. However, little is known about the impact of animals on people with kidney disease, who often live with treatment burden, as well as compromised immune systems making them vulnerable to zoonotic diseases. OBJECTIVES: To explore the impact companion and non-companion animals have on the lives of people living with kidney disease. DESIGN: Qualitative Content Analysis of 518 posts from an online forum. PARTICIPANTS: One hundred seventy-two people (109 female, 41 male and 22 unknown) posting to an online forum for people undergoing kidney dialysis. RESULTS: Benefits of bonds with animals included reciprocal love and affection, emotional support, stress reduction, aiding relaxation, assisting social interaction, animals' intuitive comfort when unwell, feelings of loyalty, and motivation to live, concerns relating to zoonotic disease risk, and patients' impressions of health professionals' opinions on animals. CONCLUSIONS: This study reinforces the existence of strong bonds between humans and animals, as well as demonstrating the importance of and concerns regarding interacting with non-companion animals for people with chronic kidney disease (CKD). There is a mismatch between patients' perception of infection risk and the advice and opinions of some healthcare professionals. Recognition and support for the role of animals as social supports are warranted in history taking, patient education of risk, and the biopsychosocial benefits of animals.

Healthcare professional and community preferences in deceased donor kidney allocation: A best-worst scaling survey.

Deceased donor kidneys are a scarce community resource; therefore, the principles underpinning organ allocation should reflect societal values. This study aimed to elicit community and healthcare professional preferences for principles guiding the allocation of kidneys from deceased donors and compare how these differed across the populations. A best-worst scaling survey including 29 principles in a balanced incomplete block design was conducted among a representative sample of the general community (n = 1237) and healthcare professionals working in transplantation (n = 206). Sequential best-worst multinomial logistic regression was used to derive scaled preference scores (PS) (range 0-100). Thematic analysis of free text responses was performed. Five of the six most valued principles among members of the community related to equity, including priority for the longest waiting (PS 100), difficult to transplant (PS 94.5) and sickest (PS 93.9), and equitable access for men and women (PS 94.0), whereas the top four principles for healthcare professional focused on maximizing utility (PS 89.9-100). Latent class analysis identified unmeasured class membership among community members. There are discordant views between community members and healthcare professionals. These should be considered in the design, evaluation, and implementation of deceased donor kidney allocation protocols.

The prevalence and evidence-based management of needle fear in adults with chronic disease: A scoping review.

BACKGROUND: Little is known about the prevalence and best management of needle fear in adults with chronic disease, who may experience frequent and long-term exposure to needles for lifesaving therapies such as renal dialysis and cancer treatment. Identifying interventions that assist in management of needle fear and associated distress is essential to support these patients with repeated needle and cannula exposure. METHOD: We followed the PRISMA methodology for scoping reviews and systematically searched PsychINFO, PubMed (MEDLINE), ProQuest, Embase and grey literature and reference lists between 1989 and October 2020 for articles related to needle discomfort, distress, anxiety, fear or phobia. The following chronic diseases were included: arthritis, asthma, chronic back pain, cancer, cardiovascular disease, chronic obstructive pulmonary disease, diabetes, and mental illness, or kidney failure. Literature concerning dentistry, vaccination, intravenous drug users and paediatric populations were excluded. RESULTS: We identified 32 papers reporting prevalence (n = 24), management (n = 5) or both (n = 3). Needle fear prevalence varied in disease cohorts: 17-52% (cancer), 25-47% (chronic kidney disease) and 0.2-80% (diabetes). Assessment methods varied across studies. Management strategies had poor evidence-base, but included needle-specific education, decorated devices, cognitive-behavioural stress management techniques, distraction, and changing the therapy environment or modality. CONCLUSION: Although needle fear is common there is a paucity of evidence regarding interventions to address it among adults living with chronic disease. This scoping review has highlighted the need for improved identification of needle fear in adults and development of interventions are required for these cohorts.

Sudden Unexpected Death Due to Myocarditis in Young People, Including Athletes.

Sudden deaths in young active people and athletes are distinctly uncommon and frequently related to highly visible cardiovascular conditions including hypertrophic cardiomyopathy and congenital coronary anomalies. Myocarditis is also a cause of sudden death in the young, but frequently under-recognized clinically, and therefore deserving of the present analysis. Two large registries were interrogated for cases of myocarditis, and clinical, demographic, and pathologic findings were assessed. Of 97 cases of myocarditis identified, ages were 19.3 ± 6.2 years, 76% male, and 58 were physically active at or near the time of death. Almost one-half of the 97 cases (47%) had a viral prodrome or symptoms (i.e., syncope, malaise, chest pain or palpitations). Nine were evaluated by cardiologists, but in none was a diagnosis of myocarditis established before death. The inflammatory cellular infiltrate was predominantly lymphocytic (67%), was most frequently multifocal (59%) and involved the conduction system (including atrioventricular node), 38%. In conclusion, myocarditis is an important but under-recognized cause of sudden death in young people including competitive athletes. Clinical diagnosis is difficult because symptoms are nonspecific and often ignored, requiring high index of suspicion for diagnosis. Our data support the ACC/AHA consensus guidelines recommending removal of individuals with myocarditis from competitive sports during recovery. Selective examination of conduction systems showed a number of cases with involvement of myocarditis, suggesting a novel mechanism for sudden death.

Feasibility and acceptability of e-PROMs data capture and feedback among patients receiving haemodialysis in the Symptom monitoring WIth Feedback Trial (SWIFT) pilot: protocol for a qualitative study in Australia.

INTRODUCTION: People receiving haemodialysis experience a high symptom burden and impaired quality of life. The use of patient-reported outcome measures (PROMs) is increasing in nephrology care, however their acceptability, utility and impacts are not well understood. METHODS AND ANALYSIS: We describe a protocol for a qualitative study to evaluate the feasibility and acceptability of electronic-PROMs (e-PROMs) data capture and feedback in haemodialysis following the pilot Symptom monitoring WIth Feedback Trial (SWIFT). SWIFT involves linkage of e-PROMs data, including symptoms and health-related quality of life, to the Australia and New Zealand Dialysis and Transplant Registry with feedback to patients' treating nephrologists and nurse unit managers. Focus groups and semistructured interviews will be conducted with nephrologists (n=15), dialysis nurses (n=24) and patients receiving haemodialysis (n=24) from six dialysis units in Australia. Question topics will include the technical and clinical feasibility and acceptability of e-PROMs reporting and feedback (including the barriers and enablers to uptake) and perceived impact on patient care and outcomes. Transcripts will be analysed thematically and guided by Normalisation Process Theory. ETHICS AND DISSEMINATION: Ethics approval was obtained from the relevant hospital Human Research Ethics Committees (HREC/18/CALHN/481; HREC/MML/54599). The findings from the SWIFT pilot and qualitative evaluation will inform the implementation of the SWIFT main trial, and more broadly, the use of e-PROMs in clinical settings and registries. TRIAL REGISTRATION NUMBER: ANZCTRN12618001976279.

A Standardized Method for Measurement of Elbow Kinesthesia.

Proprioception is an important component of controlled movement. The threshold to detection of passive movement (TDPM) is a commonly used method for quantifying the proprioceptive submodality of kinesthesia in research settings. The TDPM paradigm has been found to be valid and reliable; however, the equipment and methods used for TDPM vary between studies. In particular, the research laboratory apparatuses for producing passive movement of an extremity are often custom designed by individual laboratories or inaccessible due to high cost. There is a need for a standardized, valid, and reliable method for measuring TDPM using readily available equipment. The purpose of this protocol is to provide a standardized method for measurement of TDPM at the elbow that is economical, easy to administer, and that produces quantitative results for measurement purposes in research-based settings. This method was tested on 20 healthy adults without neurological impairment, and eight adults with chronic stroke. The results obtained suggest this method is a reliable way to quantify elbow TDPM in healthy adults, and provides initial support for validity. Researchers seeking a balance between equipment affordability and measurement precision are most likely to find this protocol of benefit.