Family-centered Outcomes Research Articles

Brain-related outcome measures in trials recruiting critically-ill children.

Randomized controlled trials leading to innovations that improve outcomes in acute life-threatening illnesses in children are scarce. A key issue is how we refocus research on outcomes that matter and are more relevant to those making emergency decisions, and those involved with managing and living with the late-outcome. We have used information from recent trials in critically ill children - in particular those illnesses without any primary neurologic involvement - to develop an approach to brain-related outcomes that will maximize child and family benefit from research. Fifteen recent pediatric critical care trials illustrate four types of brain-related outcomes assessment: death or organ-system-failures - as illustrated by studies in systemic illness; neurological and neuropsychological outcomes - as illustrated by the glycemic control studies; cognitive outcomes - as illustrated by a sedative trial; and composite outcomes - as illustrated by the therapeutic hypothermia studies. The 15 research trials point to five areas that will need to be addressed and incorporated into future trial design, including use of: neurologic monitoring during intensive care unit admission; postdischarge outcomes assessments; strategies to improve retention in long-term follow-up; child and family-centered outcomes; and core outcomes datasets.

Association of Surrogate Decision-making Interventions for Critically Ill Adults With Patient, Family, and Resource Use Outcomes

Physicians often rely on surrogate decision-makers (SDMs) to make important decisions on behalf of critically ill patients during times of incapacity. It is uncertain whether targeted interventions to improve surrogate decision-making in the intensive care unit (ICU) reduce nonbeneficial treatment and improve SDM comprehension, satisfaction, and psychological morbidity. To perform a systematic review and meta-analysis of randomized clinical trials (RCTs) to determine the association of such interventions with patient- and family-centered outcomes and resource use. A search was conducted of MEDLINE, Embase, and other relevant databases for potentially relevant studies from inception through May 30, 2018. Randomized clinical trials studying interventions that were targeted at SDMs or family members of critically ill adults in the ICU were included. Key search terms included surrogate or substitute decision-maker, critically ill, randomized controlled trials, and their respective related terms. This study followed the Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) guidelines. Two independent, blinded reviewers independently screened citations and extracted data. Random effects models with inverse variance weighting were used to pool outcomes data when possible and otherwise present findings qualitatively. Outcomes of interest were divided into 3 categories: (1) patient-related clinical outcomes (mortality, length of stay [LOS], duration of life-sustaining therapies), (2) SDM and family-related outcomes (comprehension, major change in goals of care, incident psychological comorbidities [posttraumatic stress disorder, anxiety, depression], and satisfaction with care), and (3) use of resources (cost of care and health care resource use). Of 3735 studies screened, 13 RCTs were included, comprising a total of 10 453 patients. Interventions were categorized as health care professional led (n = 6), ethics consultation (n = 3), palliative care consultation (n = 2), and media (n = 1 pamphlet and 1 video). No association with mortality was observed (risk ratio, 1.03; 95% CI, 0.98-1.08; P = .22). Intensive care unit LOS was significantly shorter among patients who died (mean difference, -2.11 days; 95% CI, -4.16 to -0.07; P = .04), but not in the overall population (mean difference, -0.79 days; 95% CI, -2.33 to 0.76 days; P = .32). There was no consistent difference in SDM-related outcomes, including satisfaction with care or perceived quality of care (n = 6 studies) and incident psychological comorbidities (depression: ratio of means, -0.11; 95% CI, -0.29 to 0.08; P = .26; anxiety: ratio of means, -0.08; 95% CI, -0.25 to 0.08; P = .31; or posttraumatic stress disorder: ratio of means: -0.04; 95% CI, -0.21 to 0.13; P = .65). Among 6 trials reporting effects on health care resource use, only 1 nurse-led intervention observed a significant reduction in costs ($75 850 control vs $51 060 intervention; P = .04). Systematic interventions aimed at improving surrogate decision-making for critically ill adults may reduce ICU LOS among patients who die in the ICU, without influencing overall mortality. Better understanding of the complex processes related to surrogate decision-making is needed.

Important Outcomes for Parents of Critically Ill Children.

Important Outcomes for Parents of Critically Ill Children.

Responsiveness of Life Participation for Parents (LPP®): A Tool for Family-Centered Rehabilitation

Aims: The Life Participation for Parents (LPP®) is a Quality of Life assessment designed to measure family-centered practice outcomes. Previous studies of the LPP have established its internal consistency (Cronbach’s alpha = .85), test–retest reliability (r = .89), construct validity, and concurrent validity. This study examined the responsiveness of the LPP, hypothesizing change scores after 3 months of intervention would exceed that explained by standard error. Methods: Thirty-two parents of children with disabilities completed the LPP to identify family-centered issues. The LPP was completed a second time after 3 months of intervention. Wilcoxon Signed Rank test was used to compare the median differences between two administrations. Minimal clinically important differences (MCID) were calculated for the total and two LPP subscales (efficiency and effectiveness). Cohen’s effect size was calculated using the standardized response mean (SRM) to quantify the change. Results: The age range of the parents was 31–50 (72%), including 31 mothers (96.9%). Median differences between the two administrations were significantly different (p < .05). The MCID were 11.34, 9.82, and 4.48; the SRM were 0.42, 0.54, and 0.04, for the LPP total score, efficiency subscale and effectiveness subscale, respectively. Conclusions: The LPP is responsive to detect a change larger than measurement error in parental ability of participating in life occupations while raising a child with disabilities.

Towards translational health policy: Findings from a state evaluation of programs targeting children with special health care needs.

Current evidence-based research suggests that early evaluation, comprehensive care plans, and appropriate referrals for childhood and adolescent behavioral and development needs is critical for successful family-centered outcomes. The overall purpose of this study was to conduct an assessment of a state public health program that offers diagnostic evaluation and coordination for children with behavioral and developmental disorders in the state of Virginia (Child Development Center programs, or CDC). A secondary purpose was to provide translational policy and advocacy targets based on key findings. The evaluation of the scope of services of the CDC programs was done using qualitative interviews with a focus group interview (n = 23), interviews from representatives from individual centers ( n = 5 centers), and descriptive quantitative data elements for the fiscal year 2015. After conducting the state public health evaluation, several translational health policy priorities emerged, including: (a) the need for integrated data standards, (b) Lack of developmental pediatric workforce, particularly in rural sectors of the state, and (c) Need for enhanced program support for care coordination. Academic nurse and public health partnerships can aid in translation from research to policy among vulnerable populations and assist in communication to key stakeholders and legislators for iterative action and reassessment.

The Use of Telemedicine to Address Disparities in Access to Specialist Care for Neonates.

Introduction: Outcomes for premature and critically ill neonates are improved with care provided by neonatologists in a neonatal intensive care unit (NICU). For smaller hospitals, maintaining the personnel and equipment necessary for the delivery and care of unexpectedly high-risk neonates is a significant challenge. To address this disparity in access, telemedicine has been increasingly used to support providers, patients, and their families in community newborn nurseries and NICUs. The purpose of this review is to present the current state of the use of telemedicine by regional NICUs to support community newborn nurseries, NICUs, and families. Methods: A literature review was conducted by two independent reviewers. Articles were selected for inclusion if they described the use of telemedicine with neonates or in the NICU. Two reviewers assessed the quality of the articles using the National Heart, Lung, and Blood Institute Study Quality Assessment Tools. Results: Fourteen articles were identified. After consensus discussion, eight of the articles were rated good and six were rated fair by the two reviewers. Many of the articles suggested improvements in quality of care, family satisfaction, and reductions in the cost of care. Unfortunately, a majority of the studies to date have had small sample sizes or were performed in a single institution and lacked robust evaluations of patient- and family-centered outcomes and provider decision making. Conclusions: While these early studies are promising, more robust studies involving more patients and more institutions are needed to identify opportunities where telemedicine can impact health outcomes, patient-centeredness, or costs of care of neonates.

Triggered Palliative Care for Late-Stage Dementia: A Pilot Randomized Trial

ContextPersons with late-stage dementia have limited access to palliative care. ObjectiveThe objective of this study was to test dementia-specific specialty palliative care triggered by hospitalization. MethodsThis pilot randomized controlled trial enrolled 62 dyads of persons with late-stage dementia and family decision-makers on admission to hospital. Intervention dyads received dementia-specific specialty palliative care consultation plus postacute transitional care. Control dyads received usual care and educational information. The primary outcome was 60-day hospital or emergency department visits. Secondary patient- and family-centered outcomes were patient comfort, family distress, palliative care domains addressed in the treatment plan, and access to hospice or community-based palliative care. Secondary decision-making outcomes were discussion of prognosis, goals of care, completion of Medical Orders for Scope of Treatment (MOST), and treatment decisions. ResultsOf 137 eligible dyads, 62 (45%) were enrolled. The intervention proved feasible, with protocol completion ranging from 77% (family two-week call) to 93% (initial consultation). Hospital and emergency department visits did not differ (intervention vs. control, 0.68 vs. 0.53 transfers per 60 days, P = 0.415). Intervention patients had more palliative care domains addressed and were more likely to receive hospice (25% vs. 3%, P < 0.019). Intervention families were more likely to discuss prognosis (90% vs. 3%, P < 0.001) and goals of care (90% vs. 25%, P < 0.001) and to have a MOST at 60-day follow-up (79% vs. 30%, P < 0.001). More intervention families made decisions to avoid rehospitalization (13% vs. 0%, P = 0.033). ConclusionSpecialty palliative care consultation for hospitalized patients with late-stage dementia is feasible and promising to improve decision-making and some treatment outcomes.

\u201cIt\u2019s better to have three brains working instead of one\u201d: a qualitative study of building therapeutic alliance with family members of critically ill patients

BackgroundStudies in the intensive care unit (ICU) suggest that better communication between families of critically ill patients and healthcare providers is needed; however, most randomized trials targeting interventions to improve communication have failed to achieve family-centered outcomes. We aim to offer a novel analysis of the complexities involved in building positive family-provider relationships in the ICU through the consideration of not only communication but other important aspects of family-provider interactions, including family integration, collaboration, and empowerment. Our goal is to explore family members’ perspectives on the enablers and challenges to establishing therapeutic alliance with ICU physicians and nurses.MethodsWe used the concept of therapeutic alliance as an organizational and analytic tool to conduct an interview-based qualitative study in a 20-bed adult medical-surgical ICU in an academic hospital in Toronto, Canada. Nineteen family members of critically ill patients who acted as substitute decision-makers and/or regularly interacted with ICU providers were interviewed. Participants were sampled purposefully to ensure maximum variation along predetermined criteria. A hybrid inductive-deductive approach to analysis was used.ResultsParticipating family members highlighted the complementary roles and practices of ICU nurses and physicians in building therapeutic alliance. They reported how both provider groups had profession specific and shared contributions to foster family communication, integration, and collaboration, while physicians played a key role in family empowerment. Families’ lack of familiarity with ICU personnel and processes, physicians’ sporadic availability and use of medical jargon during rounds, however, reinforced long established power differences between lay families and expert physicians and challenged family integration. Family members also identified informal interactions as missed opportunities for relationship-building with physicians. While informal interactions with nurses at the bedside facilitated therapeutic alliance, inconsistent and ad-hoc interactions related to routine decision-making hindered family empowerment.ConclusionsMultiple opportunities exist to improve family-provider relationships in the ICU.The four dimensions of therapeutic alliance prove analytically useful to highlight those aspects that work well and need improvement, such as in the areas of family integration and empowerment.

Providing Culturally Competent Acute Care Physical Therapy for a Complex Medical Patient of Amish Heritage

Background and Purpose: Health care providers, including physical therapists, should identify and incorporate sociocultural, educational, and environmental factors in their clinical decisions for patients of various cultural backgrounds—specifically Amish heritage as illustrated in this case report. The purpose of this case report is to describe how cultural beliefs affected acute care physical therapy (PT) and discharge planning for an older adult of Amish heritage. Case Description: The patient was a 65-year-old woman of Amish heritage 2 days post thoracic aortic aneurysm dissection surgery with an unexpected subsequent stroke. Due to their Amish beliefs, the patient and the family declined the physical therapist's initial postacute care discharge recommendation to an off-site skilled nursing facility. Significant discussion with multiple family members throughout the entire therapy process emphasized continued skilled services in accord with Amish cultural beliefs to promote safe reintegration into the Amish community. PT interventions primarily focused on culturally sensitive patient and family education and functional mobility to encourage safe patient resumption of activities of daily living and role in society. Outcomes: By the end of 2 weeks of PT (1 initial examination and 8 intervention sessions), the patient demonstrated improvements in all aspects of functional mobility and total Functional Independence Measure scores (21/126 to 86/126). On postoperative day 14, the patient transitioned to an on-site inpatient rehabilitation facility. After completing only 4 days in the inpatient rehabilitation facility, the family firmly advocated that the patient be discharged home with assistance from the family and Amish community. Discussion: Physical therapists may be unfamiliar with patients of Amish heritage due to the infrequency of PT services used by these individuals. This case report demonstrates a physical therapist's sensitivity to and acceptance of the Amish cultural beliefs, which ensured appropriate clinical decisions and positive patient- and family-centered outcomes. Engaging the patient's family in dialogue about realistic discharge options early in the acute care stay allowed the family time to understand the complexity of the patient's diagnoses and challenges of the health care environment as well as align decisions with their cultural beliefs.

Transformation of a Pediatric Primary Care Waiting Room: Creating a Bridge to Community Resources.

Introduction Children and families living in poverty frequently encounter social risks that significantly affect their health and well-being. Physicians' near universal access to at-risk children and their parents presents opportunities to address social risks, but time constraints frequently interfere. We sought to redesign our waiting room to create a clinic-to-community bridge and evaluate the impact of that redesign on family-centered outcomes. Methods We conducted a pre-post study of a waiting room redesign at a large, academic pediatric primary care center. Design experts sought input about an optimal waiting room from families, community partners and medical providers. Family caregivers were surveyed before and after redesign regarding perceived availability of help with social needs and access to community resources, and hospitality and feelings of stress. Pre-post differences were assessed using the Chi square or Wilcoxon rank sum test. Results The key redesign concepts that emerged included linkages to community organizations, a welcoming environment, and positive distractions for children. A total of 313 caregiver surveys were completed (pre-160; post-153). Compared to pre-redesign, caregivers surveyed post-redesign were significantly more likely to perceive the waiting room as a place to obtain help connecting to community resources and find information about clinical and educational resources (both p < 0.05). Families were also significantly more likely to report the waiting room as more welcoming and relaxing, with sufficient privacy and space (all p < 0.05). Discussion Waiting rooms, typically a place of wasted time and space, can be redesigned to enhance families' engagement and connection to community resources.

Family-Based Interventions Targeting Improvements in Health and Family Outcomes of Children and Adolescents with Type 1 Diabetes: a Systematic Review

A systematic review was conducted of family-based interventions to improve glycemic control, adherence, and psychosocial outcomes in children and adolescents with type 1 diabetes (T1D). Electronic databases were searched for randomized controlled trials (RCTs) published since the seminal Diabetes Control and Compliance Trial (DCCT). Interventions are summarized and findings reviewed to help guide clinical practice and future research. Twenty-five RCTs are reviewed. The majority of studies (n = 15) focused on interventions targeting both children and adolescents and their caregivers and were delivered in diabetes clinics, outpatient settings, mental health clinics, or participants' homes. Family-based interventions for youth with T1D appear effective at improving diabetes and family-centered outcomes. Additional research is needed to examine the pathways to improvement in glycemic control, as outcomes were mixed. Future research should also involve measures beyond HbA1c given new markers for sustained health improvement and outcomes are being explored.

Family-Centered Education and Clinical Outcomes of Patients after Acute Myocardial Infarction

Family-Centered Education and Clinical Outcomes of Patients after Acute Myocardial Infarction

Oncology providers, patients, and caregivers reflect: Applying "big data" for better supportive outcomes.

59 Background: The development of “big data” methods offers an opportunity to more precisely predict patient outcomes. We explored physicians, patients, and caregivers’ perspectives about the use of predictive models in oncology practice. Methods: We conducted 12 patient, 12 provider, and 12 caregiver interviews (N = 36) from Stanford University outpatient oncology clinics. We queried participants about patient and family-centered applications of predictive models for prognosis, cost, and novel patient and family-centered outcomes. Two trained coders iteratively examined transcripts for consistent topics and used the constant comparative methods to establish themes and sub-themes. Results: Several overlapping themes emerged: 1) Outcomes of Interest, [provider] “Predictive information about side effects or adverse effects of treatment would be helpful”: 2) Barriers to Using Predictions, [patient] “If it seems too sort of set in stone, without…you know, everything has grey areas”; 3) Benefits to Using Predictions, [provider] “Some people…their cancer may be cured, but they live with these really horrible chronic illnesses and some people would say, ‘I would have rather have just died from my disease than be in this shape’; and 4) Communication Strategy, [provider] “I’m not even sure if I would bring up the models…I would kind of fall back on what I normally discuss with patients”. A theme specific to the provider group was 5) Accuracy of Model Information, [provider] “It’s hard to know whether to use in the clinical setting just the results of the model or whether you would really want to go down to the root level and actually access the raw data”. A theme specific to the patient and caregiver groups was 6) Privacy, [caregiver] “I would want to be able to have the patient authorize that”. Conclusions: There is consistency between provider strategies to communicate prognostic information and patients’ perceptions of how they would like prognostic information to be communicated to them. While providers are concerned with accuracy of predictive models, patients and caregivers are more concerned with privacy.

Comparative Effectiveness of Clinical-Community Childhood Obesity Interventions

Novel approaches to care delivery that leverage clinical and community resources could improve body mass index (BMI) and family-centered outcomes. To examine the extent to which 2 clinical-community interventions improved child BMI z score and health-related quality of life, as well as parental resource empowerment in the Connect for Health Trial. This 2-arm, blinded, randomized clinical trial was conducted from June 2014 through March 2016, with measures at baseline and 1 year after randomization. This intent-to-treat analysis included 721 children ages 2 to 12 years with BMI in the 85th or greater percentile from 6 primary care practices in Massachusetts. Children were randomized to 1 of 2 arms: (1) enhanced primary care (eg, flagging of children with BMI ≥ 85th percentile, clinical decision support tools for pediatric weight management, parent educational materials, a Neighborhood Resource Guide, and monthly text messages) or (2) enhanced primary care plus contextually tailored, individual health coaching (twice-weekly text messages and telephone or video contacts every other month) to support behavior change and linkage of families to neighborhood resources. One-year changes in age- and sex-specific BMI z score, child health-related quality of life measured by the Pediatric Quality of Life 4.0, and parental resource empowerment. At 1 year, we obtained BMI z scores from 664 children (92%) and family-centered outcomes from 657 parents (91%). The baseline mean (SD) age was 8.0 (3.0) years; 35% were white (n = 252), 33.3% were black (n = 240), 21.8% were Hispanic (n = 157), and 9.9% were of another race/ethnicity (n = 71). In the enhanced primary care group, adjusted mean (SD) BMI z score was 1.91 (0.56) at baseline and 1.85 (0.58) at 1 year, an improvement of -0.06 BMI z score units (95% CI, -0.10 to -0.02) from baseline to 1 year. In the enhanced primary care plus coaching group, the adjusted mean (SD) BMI z score was 1.87 (0.56) at baseline and 1.79 (0.58) at 1 year, an improvement of -0.09 BMI z score units (95% CI, -0.13 to -0.05). However, there was no significant difference between the 2 intervention arms (difference, -0.02; 95% CI, -0.08 to 0.03; P = .39). Both intervention arms led to improved parental resource empowerment: 0.29 units (95% CI, 0.22 to 0.35) higher in the enhanced primary care group and 0.22 units (95% CI, 0.15 to 0.28) higher in the enhanced primary care plus coaching group. Parents in the enhanced primary care plus coaching group, but not in the enhanced care alone group, reported improvements in their child's health-related quality of life (1.53 units; 95% CI, 0.51 to 2.56). However, there were no significant differences between the intervention arms in either parental resource empowerment (0.07 units; 95% CI, -0.02 to 0.16) or child health-related quality of life (0.89 units; 95% CI, -0.56 to 2.33). Two interventions that included a package of high-quality clinical care for obesity and linkages to community resources resulted in improved family-centered outcomes for childhood obesity and improvements in child BMI. clinicaltrials.gov Identifier: NCT02124460.

An Academic-Service Partnership: A System-Wide Approach and Case Report.

An academic-service partnership was formed to increase educational capacity, improve evidence-based nursing at the point of care, and engage staff nurses, clinical faculty, and students in patient and family care. This case report reflects an overview of the first year of full implementation, and survey results from nurse leaders and faculty at the 3-year time point. Following its third year of an academic-service partnership, the shared mission, vision, and values have resulted in stronger NCLEX-RN results, improved quality initiatives, and trends for improvements in patient outcomes. Alignment with faculty and mentors surrounding student expectations has improved, as well as shared evidence-based practices. Sustaining an academic-service partnership requires dedicated leaders, faculty, and mentors. This partnership continues to thrive and move toward excellence in patient- and family-centered outcomes and undergraduate clinical education. [J Nurs Educ. 2017;56(6):373-377.].

Developing a Research Agenda for Integrating Palliative Care into Critical Care and Pulmonary Practice To Improve Patient and Family Outcomes.

Palliative care is a medical specialty and philosophy of care that focuses on reducing suffering among patients with serious illness and their family members, regardless of disease diagnosis or prognosis. As critical illness or moderate to severe pulmonary disease confers significant disease-related symptom burdens, palliative care and palliative care specialists can aid in reducing symptom burden and improving quality of life among these patients and their family members. The objective of this article is to review the existing gaps in evidence for palliative care in pulmonary disease and critical illness and to use an interdisciplinary working group convened by the National Institutes of Health and the National Palliative Care Research Center to develop a research agenda to address these gaps. We completed a narrative review of the literature concerning the integration of palliative care into pulmonary and/or critical care. The review was based on recent systematic reviews on these topics as well as a summary of relevant articles identified through hand search. We used this review to identify gaps in current knowledge and develop a research agenda for the future. We identified key areas of need and knowledge gaps that should be addressed to improve palliative care for patients with pulmonary and critical illness. These areas include developing and validating patient- and family-centered outcomes, identifying the key components of palliative care that are effective and cost-effective, developing and evaluating different models of palliative care delivery, and determining the effectiveness and cost-effectiveness of palliative care interventions. The goal of this research agenda is to encourage researchers, clinicians, healthcare systems, and research funders to identify research that can address these gaps and improve the lives of patients with pulmonary and critical illness and their family members.

Optimizing a Nurse-led Transitional Home Visit Program in Preparation for a Randomized Control Trial.

Introduction:The Hospital to Home Outcomes study began with the end goal of evaluating the effectiveness of a single, nurse-led transitional home visit (home visit) program, for acutely ill, pediatric patients, which had been piloted at our institution. As part of the overall study design, building on prior randomized control trials that utilized a run-in period prior to the trial, our study team designed an optimization period to test the home visit and study procedures under real-world conditions.Methods:For this optimization project, there were 3 process improvement goals: to improve the referral process to the home visit, to optimize the home visit content, and to define and operationalize measures of patient- and family-centered outcomes to be used in the subsequent randomized control trial. During the optimization period, a multidisciplinary study team met weekly to review family and stakeholder feedback about the iterative modifications made to the home visit process, content, and outcome measures.Results:Optimization home visits were completed with 301 families across a variety of discharge diagnoses. The outcomes planned for the clinical trial were tested and refined. Feedback from families and stakeholders indicated that the content changes made to the home visits resulted in increased family knowledge of warning signs to monitor postdischarge. Thirty-one percent of families reported that they altered the care of their child after the home visit.Conclusion:Through iterative testing, informed by multistakeholder feedback, we leveraged patient and family engagement to maximize the effectiveness and generalizability of the home visit intervention.

Family-centered outcomes during and after critical illness: current outcomes and opportunities for future investigation.

Family-centered outcomes during and after critical illness assess issues that are most important to family members. An understanding of family-centered outcomes is necessary to support the provision of family-centered care and to foster development of interventions to improve care and communication in the ICU. Current family-centered outcomes in critical care include satisfaction with care, including end-of-life care, symptoms of psychological distress, and health-related quality of life. Novel measures include assessments of decisional conflict, decision regret, therapeutic alliance, and caregiver burden, as well as positive adaptations and resilience. Critical illness places a significant burden on family members. A wide variety of family-centered outcomes are available to guide improvements in care and communication. Future research should focus on developing sensitive and responsive measures that capture key elements of the family member experience during and after critical illness.

Palliative Care in Critical Care Settings: A Systematic Review of Communication-Based Competencies Essential for Patient and Family Satisfaction

There is an emerging literature on the physician competencies most meaningful to patients and their families. However, there has been no systematic review on physician competency domains outside direct clinical care most important for patient- and family-centered outcomes in critical care settings at the end of life (EOL). Physician competencies are an essential component of palliative care (PC) provided at the EOL, but the literature on those competencies relevant for patient and family satisfaction is limited. A systematic review of this important topic can inform future research and assist in curricular development. Review of qualitative and quantitative empirical studies of the impact of physician competencies on patient- and family-reported outcomes conducted in accordance with the Preferred Reporting Items for Systematic reviews and Meta-Analyses guidelines for systematic reviews. The data sources used were PubMed, MEDLINE, Web of Science, and Google Scholar. Fifteen studies (5 qualitative and 10 quantitative) meeting inclusion and exclusion criteria were identified. The competencies identified as critical for the delivery of high-quality PC in critical care settings are prognostication, conflict mediation, empathic communication, and family-centered aspects of care, the latter being the competency most frequently acknowledged in the literature identified. Prognostication, conflict mediation, empathic communication, and family-centered aspects of care are the most important identified competencies for patient- and family-centered PC in critical care settings. Incorporation of education on these competencies is likely to improve patient and family satisfaction with EOL care.

Family Perspectives on High-Quality Pediatric Subspecialty Referrals

ObjectiveAlthough children are frequently referred to subspecialist physicians, many inadequacies in referral processes have been identified from physician and system perspectives. Little is known, however, about how to comprehensively measure or improve the quality of the referral systems from a family-centered perspective. To foster family-centered improvements to pediatric subspecialty referrals, we sought to develop a framework for high-quality, patient-centered referrals from the perspectives of patients and their families. MethodsWe used stakeholder-informed qualitative analysis of parent, caregiver, and patient interviews to identify outcomes, processes, and structures of high-quality pediatric subspecialty referrals as perceived by patients and their family members. ResultsWe interviewed 21 informants. Informants identified 5 desired outcomes of subspecialty referrals: improved functional status or symptoms; improved long-term outcomes; improved knowledge of their disease; informed expectations; and reduced anxiety about the child's health status. Processes that informants identified as supporting these outcomes centered around 6 key steps in subspecialty referrals, including the referral decision, previsit information transfer, appointment scheduling, subspecialist visit, postvisit information transfer, and ongoing care integration and communication. Health care delivery structures identified by informants as supporting these processes included physical infrastructure, human resources, and information technology systems. ConclusionsWe identified family-centered outcomes, processes, and structures of high-quality pediatric subspecialty referrals. These domains can be used not only to improve measurement of the quality of existing referral systems but also to inform future interventions to improve patient-centered outcomes for children in need of specialty care.