Parental Views of Facilitators and Barriers to Research Participation: Systematic Review.

BACKGROUND AND OBJECTIVES: Low enrollment within pediatric research increases the cost of research, decreases generalizability, and threatens to exacerbate existing health disparities. To assess barriers and facilitators to pediatric research participation and evaluate differences by enrollment status. METHODS: Data Sources include PubMed, Embase, PsycInfo, Cumulative Index to Nursing and Allied Health Literature, and Web of Science. Study selection include peer reviewed articles that contained information related to facilitators and barriers to the parental decision whether to enroll their child in research and included the views of parents who declined. We extracted barriers and facilitators to research, enrollment status, and study characteristics, including study design, quality, and patient population. RESULTS: Seventy articles were included for analysis. Facilitators of participation included: benefits, trust, support of research, informational and consent related, and relational issues. Common facilitators within those categories included health benefit to child (N = 39), altruism (N = 30), and the importance of research (N = 26). Barriers to participation included: study-related concerns, burdens of participation, lack of trust, general research concerns, informational and consent related, and relational issues. Common barriers within those categories included risks to child (N = 46), burdens of participation (N = 35), and the stress of the decision (N = 29). We had a limited ability to directly compare by enrollment status and no ability to analyze interactions between facilitators and barriers. We only included studies written in English. CONCLUSIONS: This review identified key facilitators and barriers to research participation in pediatrics. The findings from this review may guide researchers aiming to create interventions to improve the parental experience of recruitment for pediatric studies and to optimize enrollment rates.

Advance Care Planning Among Older Adults With Advanced Non-Dialysis-Dependent CKD and Their Care Partners: Perceptions Versus Reality?

RATIONALE & OBJECTIVE: Older patients with advanced chronic kidney disease (CKD) use intensive care at the end of life and die in a hospital more frequently than patients with cancer or heart disease. Advance care planning (ACP) can help align treatment with patient preferences and improve patient-centered care, yet ACP quality and experiences among older patients with CKD and their care partners remain incompletely understood, particularly among the non-dialysis-dependent population. STUDY DESIGN: In-person interviewer-administered surveys of patients 70 years and older with non-dialysis-dependent CKD stage 4 or 5 and their self-identified care partners. SETTING & PARTICIPANTS: 42 participants (31 patients, 11 care partners) at 2 clinical sites in greater Boston. OUTCOMES: Completion of advance directives and self-reported perceptions, preferences, and experiences of ACP. ANALYTICAL APPROACH: Descriptive analysis of patient and care partner surveys. McNemar test analysis to compare patient and care partner responses. RESULTS: Most patients had written advance directives (64%) and surrogate decision makers (81%). Although patients reported positive perceptions and high trust in their clinicians' judgment, few (16%) had actually discussed preferences for life-sustaining treatment with their nephrologists. Few ACP discussions included components reflective of high-quality ACP: 16% of patients had been asked about their values concerning end-of-life care and 7% had discussed issues of decision-making capacity and consent to care should their health decline. When presented with 2 hypothetical scenarios (stroke/heart attack or dementia), nearly all patients and care partners reported a preference for comfort care over delaying death. Care partners were more likely than patients to report that they had experienced discussion components reflective of high-quality ACP with the clinical team. LIMITATIONS: Single metropolitan area; most patients did not identify a care partner; nonresponse bias and small sample size. CONCLUSIONS: Patients often believed that their clinicians understood their end-of-life wishes despite not having engaged in ACP conversations that would make those wishes known. Improving clinical ACP communication may result in end-of-life treatment that better aligns with patient goals.

Characterizing Approaches to Dialysis Decision Making with Older Adults: A Qualitative Study of Nephrologists.

BACKGROUND AND OBJECTIVES: Despite guidelines recommending shared decision making, nephrologists vary significantly in their approaches to discussing conservative management for kidney replacement therapy with older patients. Many older patients do not perceive dialysis initiation as a choice or receive sufficient information about conservative management for reasons incompletely understood. We examined how nephrologists' perceptions of key outcomes and successful versus failed treatment discussions shape their approach and characterized different models of decision making, patient engagement, and conservative management discussion. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: Our qualitative study used semistructured interviews with a sample of purposively sampled nephrologists. Interviews were conducted from June 2016 to May 2017 and continued until thematic saturation. Data were analyzed using typological and thematic analyses. RESULTS: Among 35 nephrologists from 18 practices, 20% were women, 66% had at least 10 years of nephrology experience, and 80% were from academic medical centers. Four distinct approaches to decision making emerged: paternalist, informative (patient led), interpretive (navigator), and institutionalist. Five themes characterized differences between these approaches, including patient autonomy, engagement and deliberation (disclosing all options, presenting options neutrally, eliciting patient values, and offering explicit treatment recommendation), influence of institutional norms, importance of clinical outcomes (e.g., survival and dialysis initiation), and physician role (educating patients, making decisions, pursuing active therapies, and managing symptoms). Paternalists and institutionalists viewed initiation of dialysis as a measure of success, whereas interpretive and informative nephrologists focused on patient engagement, quality of life, and aligning patient values with treatment. In this sample, only one third of providers presented conservative management to patients, all of whom followed either informative or interpretive approaches. The interpretive model best achieved shared decision making. CONCLUSIONS: Differences in nephrologists' perceptions of their role, patient autonomy, and successful versus unsuccessful encounters contribute to variation in decision making for patients with kidney disease.

Discussing Conservative Management With Older Patients With CKD: An Interview Study of Nephrologists.

BACKGROUND: Although dialysis may not provide a large survival benefit for older patients with kidney failure, few are informed about conservative management. Barriers and facilitators to discussions about conservative management and nephrologists' decisions to present the option of conservative management may vary within the nephrology provider community. STUDY DESIGN: Interview study of nephrologists. SETTING & PARTICIPANTS: National sample of US nephrologists sampled based on sex, years in practice, practice type, and region. METHODOLOGY: Qualitative semistructured interviews continued until thematic saturation. ANALYTICAL APPROACH: Thematic and narrative analysis of recorded and transcribed interviews. RESULTS: Among 35 semistructured interviews with nephrologists from 18 practices, 37% described routinely discussing conservative management ("early adopters"). 5 themes and related subthemes reflected issues that influence nephrologists' decisions to discuss conservative management and their approaches to these discussions: struggling to define nephrologists' roles (determining treatment, instilling hope, and improving patient symptoms), circumventing end-of-life conversations (contending with prognostic uncertainty, fearing emotional backlash, jeopardizing relationships, and tailoring information), confronting institutional barriers (time constraints, care coordination, incentives for dialysis, and discomfort with varied conservative management approaches), conservative management as "no care," and moral distress. Nephrologists' approaches to conservative management discussions were shaped by perceptions of their roles and by a common view of conservative management as no care. Their willingness to pursue conservative management was influenced by provider- and institutional-level barriers and experiences with older patients who regretted or had been harmed by dialysis (moral distress). Early adopters routinely discussed conservative management as a way of relieving moral distress, whereas others who were more selective in discussing conservative management experienced greater distress. LIMITATIONS: Participants' views are likely most transferable to large academic medical centers, due to oversampling of academic clinicians. CONCLUSIONS: Our findings clarify how moral distress serves as a catalyst for conservative management discussion and highlight points of intervention and mechanisms potentially underlying low conservative management use in the United States.