Leppin, Aaron L.

AbstractBackgroundPatients and clinicians do not often agree on whether a decision has been made about cancer care. This could be explained by factors related to communication quality and/or the type of decision being made.MethodsWe used a self‐developed coding scheme to code a random sample of 128 encounters in which patients and clinicians either agreed (n=64) or disagreed (n=64) that a cancer care decision was made and tested for associations between concordance and key communication behaviours. We also identified and characterized cancer care decisions by topic and level of patient involvement and looked for trends.ResultsWe identified 378 cancer care decisions across 128 encounters. Explicit decisions were most commonly made about topics wherein decision control could be easily delegated to a clear and present expert (eg either the patient or the clinician). Related to this, level of patient involvement varied significantly by decision topic. Explicit decisions were rarely made in an observable way about social, non‐clinical or self‐management related topics, although patients and clinicians both reported having made a cancer care decision in encounters where no decisions were observed. We found no association between communication behaviours and concordance in our sample.ConclusionsWhat counts as a “decision” in cancer care may be constructed within disparate social roles that leave many agendas unaddressed and decisions unmade. Changing the content of conversations to encourage explicit decisions about self‐management and life context‐related topics may have greater value in enabling shared understanding than promoting communication behaviours among already high‐performing communicators.

Overuse of medical services is an increasingly recognized driver of poor‐quality care and high cost. A practical framework is needed to guide clinical decisions and facilitate concrete actions that can reduce overuse and improve care. We used an iterative, expert‐informed, evidence‐based process to develop a framework for conceptualizing interventions to reduce medical overuse. Given the complexity of defining and identifying overused care in nuanced clinical situations and the need to define care appropriateness in the context of an individual patient, this framework conceptualizes the patient–clinician interaction as the nexus of decisions regarding inappropriate care. This interaction is influenced by other utilization drivers, including healthcare system factors, the practice environment, the culture of professional medicine, the culture of healthcare consumption, and individual patient and clinician factors. The variable strength of the evidence supporting these domains highlights important areas for further investigation.

An increasing proportion of healthcare resources in the United States are directed toward an expanding group of complex and multimorbid patients. Federal stakeholders have called for new models of care to meet the needs of these patients. Minimally Disruptive Medicine (MDM) is a theory-based, patient-centered, and context-sensitive approach to care that focuses on achieving patient goals for life and health while imposing the smallest possible treatment burden on patients’ lives. The MDM Care Model is designed to be pragmatically comprehensive, meaning that it aims to address any and all factors that impact the implementation and effectiveness of care for patients with multiple chronic conditions. It comprises core activities that map to an underlying and testable theoretical framework. This encourages refinement and future study. Here, we present the conceptual rationale for and a practical approach to minimally disruptive care for patients with multiple chronic conditions. We introduce some of the specific tools and strategies that can be used to identify the right care for these patients and to put it into practice.

AbstractBackgroundShared decision making is promoted to improve cancer care quality. Patients and clinicians may have different ideas about what constitutes a cancer care decision, which may limit the validity of self‐reported measures of shared decision making. We sought to estimate the extent to which patients and clinicians agree on whether a cancer care decision was made during an outpatient encounter.MethodsWe surveyed patients and clinicians immediately after an oncology encounter at a large, tertiary medical centre and calculated agreement in response to the single‐item question, ‘Was a specific decision about cancer care made during the appointment today?’ Answer options were ‘yes’ and ‘no’. Participants were 315 oncology patients, with any solid tumour malignancy and at any stage of management, and their clinicians (22 staff oncologists, nine senior fellows and five nurse practitioners).ResultsPatients and clinicians reported having made a cancer care decision in 184 (58%) and 174 (55%) of encounters, respectively. They agreed on whether a cancer care decision was made in 213 (68%) of encounters (chance‐adjusted agreement was 0.34); in 56 of the 102 discordant encounters, the patient reported making a decision while the clinician did not. We found no significant correlates with discordance.ConclusionsPatients and clinicians do not always agree on whether a cancer care decision was made. As such, measures that ask patients and/or clinicians to evaluate a decision‐making process or outcome may be methodologically insufficient when they do not explicitly orient respondents towards the thing they are being asked to assess.

SummaryBackgroundThe presence of germline mutations in sporadic pheochromocytomas and paragangliomas (SPPs) may change the clinical management of both index patients and their family members. However, the frequency of germline mutations in SPPs is unknown.ObjectiveTo describe the frequency of germline mutations in SPPs and to determine the value of testing index patients and their family members for these mutations.MethodsWe searched databases through June 2012 for observational studies of patients with SPPs who underwent germline genetic testing. The criteria used to define sporadic tumours were (i) the absence of a family history of PCC/PG, (ii) the absence of syndromic features, (iii) the absence of bilateral disease and (iv) the absence of metastatic disease.ResultsWe included 31 studies including 5031 patients (mean age 44). These patients received tests for any of these ten mutations: SDHAF2, RET, SDHD, SDHB, SDHC, VHL, TMEM127, MAX, Isocitrate Dehydrogenase Mutation (IDH) and NF1. The overall frequency of germline mutation in SPP was 551 of 5031 or 11%; when studies with patients fulfilling four criteria for sporadic tumours were used, the frequency was 171 of 1332 or 13%. The most common germline mutation was SDHB 167 of 3611 (4·6%). Little outcome data were available to assess the benefits of genetic testing in index cases and family members.ConclusionsThe frequency of germline mutations in SPPs is approximately 11–13% and the most common mutations affect less than 1 in 20 patients. The value of testing for germline mutations in patients with SPPs and their family members is unknown, as the balance of potential benefits and harms remains unclear.