RESUMO
BACKGROUND: Effective interpersonal communication is critical for shared decision-making (SDM). Previous SDM communication training in nephrology has lacked context-specific evidence from ethnographic analysis of SDM interactions with older patients considering treatment options of end stage kidney disease (ESKD). This study explores communication strategies in SDM discussions in nephrology, specifically focusing on older patients considering dialysis as kidney replacement therapy (KRT). METHODS: We conducted a qualitative study analysing naturally-occurring audio-recorded clinical interactions (n = 12) between Australian kidney doctors, patients aged 60+, and carers. Linguistic ethnography and qualitative socially-oriented functional approaches were used for analysis. RESULTS: Two types of communication strategies emerged: (1) Managing and advancing treatment decisions: involving active checking of knowledge, clear explanations of options, and local issue resolution. (2) Pulling back: Deferring or delaying decisions through mixed messaging. Specifically for non-English speaking patients, pulling back was further characterised by communication challenges deferring decision-making including ineffective issue management, and reliance on family as interpreters. Age was not an explicit topic of discussion among participants when it came to making decisions about KRT but was highly relevant to treatment decision-making. Doctors appeared reluctant to broach non-dialysis conservative management, even when it appears clinically appropriate. Conservative care, an alternative to KRT suitable for older patients with co-morbidities, was only explicitly discussed when prompted by patients or carers. CONCLUSIONS: The findings highlight the impact of different communication strategies on SDM discussions in nephrology. This study calls for linguistic-informed contextualised communication training and provides foundational evidence for nephrology-specific communication skills training in SDM for KRT among older patients. There is urgent need for doctors to become confident and competent in discussing non-dialysis conservative management. Further international research should explore naturally-occurring SDM interactions in nephrology with other vulnerable groups to enhance evidence and training integration.
Assuntos
Tomada de Decisão Compartilhada , Insuficiência Renal Crônica , Humanos , Diálise Renal , Relações Médico-Paciente , Austrália , Insuficiência Renal Crônica/terapia , Comunicação , Participação do Paciente , Tomada de DecisõesRESUMO
OBJECTIVE: To describe and analyse the perspectives and communication practices of kidney clinicians and older patients (aged 60 +) during collaborative education and decision-making about dialysis. METHODS: This qualitative study drew on pluralistic data sources and analytical approaches investigating elicited semi-structured interviews (n = 31) with doctors (n = 8), nurses (n = 8) and patients (n = 15), combined with ethnographic observations, written artefacts and audio-recorded naturally-occurring interactions (n = 23, education sessions n = 4; consultations n = 19) in a tertiary Australian kidney outpatient clinic. Data were analysed for themes and linguistic discourse features. RESULTS: Five themes were identified across all data sources: 1) lost opportunity in education; 2) persistent disease knowledge gaps; 3) putting up with dialysis; 4) perceived and real involvement in decision-making and 5) complex role of family as decision-making brokers. CONCLUSION: As the first study to complement interviews with evidence from naturally-occurring kidney interactions, this study balances the perspectives of how older patients and their clinicians view chronic kidney disease education, with how decision-making about dialysis is reflected in practice. PRACTICE IMPLICATIONS: The study provides suggestions for contextualized, multi-perspectives formal and informal training for improving decision-making about dialysis, spanning from indications to boost communication efficiency, to reducing unexplained jargon, incorporating patient navigators and exploring different dialysis modalities.
Assuntos
Diálise Renal , Insuficiência Renal Crônica , Humanos , Tomada de Decisões , Austrália , Tomada de Decisão Compartilhada , Pesquisa QualitativaRESUMO
Systemic lupus erythematosus (SLE) is a heterogeneous autoimmune disease with a clear genetic component. While most SLE patients carry rare gene variants in lupus risk genes, little is known about their contribution to disease pathogenesis. Amongst them, SH2B3-a negative regulator of cytokine and growth factor receptor signaling-harbors rare coding variants in over 5% of SLE patients. Here, we show that unlike the variant found exclusively in healthy controls, SH2B3 rare variants found in lupus patients are predominantly hypomorphic alleles, failing to suppress IFNGR signaling via JAK2-STAT1. The generation of two mouse lines carrying patients' variants revealed that SH2B3 is important in limiting the number of immature and transitional B cells. Furthermore, hypomorphic SH2B3 was shown to impair the negative selection of immature/transitional self-reactive B cells and accelerate autoimmunity in sensitized mice, at least in part due to increased IL-4R signaling and BAFF-R expression. This work identifies a previously unappreciated role for SH2B3 in human B cell tolerance and lupus risk.