Preferred Communication Strategies for People with Communication Disabilities in Health Care Encounters: a Qualitative Study.

BACKGROUND: People with communication disabilities (CDs), which includes disabilities in speech, language, voice and/or hearing, experience health and healthcare disparities. A barrier to accessing high-quality, equitable care is the lack of effective communication between patients and their providers. OBJECTIVE: In designing a patient-prompted tool to facilitate communication, we analyzed qualitative feedback on communication strategies and the experience of people with CDs, caregivers, and providers in healthcare encounters. We aimed to describe communication strategies that patients with CDs find most useful and optimize a tool for patients to share their communication strategy preferences during clinical encounters. While patient-provider communication is paramount in every interaction, we aimed to highlight the intricacies of optimizing communication for this population. DESIGN: We performed a qualitative study utilizing focus groups and interviews with patients with CDs, their caregivers, and healthcare providers. PARTICIPANTS: A total of 46 individuals participated in focus groups or interviews; 26 participants self-reported a CD, nine were caregivers, and 11 were providers. Participants represented diverse types of CDs, including stuttering, aphasia, hearing loss, and people with autism or cerebral palsy who use assistive technology to communicate. APPROACH: Analysis of qualitative interview and focus group data was guided by a qualitative content analysis approach. KEY RESULTS: We identified three themes: (1) While communication strategies should be individualized, participants agreed upon a consolidated list of best strategies and accommodations. We used this consolidated list to finalize tool development. (2) Patients and providers preferred disclosure of the CD and desired communication strategies before the appointment. (3) Providers often do not use communication strategies and accommodations during clinical encounters. CONCLUSIONS: For patients with CDs, it is critical to acknowledge and document the CD and individualize communication strategies during healthcare visits to facilitate communication. Studies are needed to evaluate whether improved communication strategy usage leads to improved health outcomes for this population.

A coordinated approach for managing polypharmacy among children with medical complexity: rationale and design of the Pediatric Medication Therapy Management (pMTM) randomized controlled trial.

BACKGROUND: Children with medical complexity (CMC) often rely upon the use of multiple medications to sustain quality of life and control substantial symptom burden. Pediatric polypharmacy (≥ 5 concurrent medications) is prevalent and increases the risk of medication-related problems (MRPs). Although MRPs are associated with pediatric morbidity and healthcare utilization, polypharmacy is infrequently assessed during routine clinical care for CMC. The aim of this randomized controlled trial is to determine if a structured pharmacist-led Pediatric Medication Therapy Management (pMTM) intervention reduces MRP counts, as well as the secondary outcomes of symptom burden and acute healthcare utilization. METHODS: This is a hybrid type 2 randomized controlled trial assessing the effectiveness of pMTM compared to usual care in a large, patient-centered medical home for CMC. Eligible patients include all children ages 2-18 years old, with ≥ 1 complex chronic condition, and with ≥ 5 active medications, as well as their English-speaking primary caregivers. Child participants and their primary parental caregivers will be randomized to pMTM or usual care before a non-acute primary care visit and followed for 90 days. Using generalized linear models, the overall effectiveness of the intervention will be evaluated using total MRP counts at 90 days following pMTM intervention or usual care visit. Following attrition, a total of 296 CMC will contribute measurements at 90 days, which provides > 90% power to detect a clinically significant 1.0 reduction in total MRPs with an alpha level of 0.05. Secondary outcomes include Parent-Reported Outcomes of Symptoms (PRO-Sx) symptom burden scores and acute healthcare visit counts. Program replication costs will be assessed using time-driven activity-based scoring. DISCUSSION: This pMTM trial aims to test hypotheses that a patient-centered medication optimization intervention delivered by pediatric pharmacists will result in lower MRP counts, stable or improved symptom burdens, and fewer cumulative acute healthcare encounters at 90 days following pMTM compared to usual care. The results of this trial will be used to quantify medication-related outcomes, safety, and value for a high-utilization group of CMC, and outcomes may elucidate the role of integrated pharmacist services as a key component of outpatient complex care programs for this priority pediatric population. TRIAL REGISTRATION: This trial was prospectively registered at clinicaltrials.gov (NCT05761847) on Feb 25, 2023.

Perspectives of Patients with Diverse Disabilities Regarding Healthcare Accommodations to Promote Healthcare Equity: a Qualitative Study.

BACKGROUND: Patients with disabilities often require healthcare accommodations in order to access high-quality, equitable healthcare services. While attention has been paid to accommodation needs in specific disability populations, limited research to date has explored healthcare accommodations that cross-cut diverse disability populations. OBJECTIVE: To identify a deeper understanding regarding accommodations in healthcare settings that could apply across disability populations and promote equitable healthcare. DESIGN: We conducted qualitative focus groups with patients with disabilities and caregivers to understand their experiences and preferences for healthcare accommodations. PARTICIPANTS: We recruited patients and caregivers across all major disability categories to participate in focus groups. Participants were recruited through advocacy organizations and healthcare settings in Southeastern Minnesota. APPROACH: A total of eight focus groups were conducted with 56 participants. Participants described their healthcare experiences and desires for healthcare accommodations. The multidisciplinary research team recorded, transcribed verbatim, and coded all focus groups. The team thematically coded transcripts using content analysis within and across focus groups to identify major themes. KEY RESULTS: Patients identified four challenges and corresponding steps healthcare team could take to promote equitable care: (1) consistent documentation of disabilities and needed accommodations in the medical record; (2) allowance for accommodations to the environment, including adapting physical space, physical structures, and scheduling and rooming processes; (3) provide accommodations for administrative tasks, such as completing paper or electronic forms; and (4) adapt communication during interactions, such as speaking slower or using terms that patients can easily understand. CONCLUSION: These identified themes represent specific opportunities for healthcare teams to effectively provide accessible care to patients with disabilities. Many of the accommodations require minimal financial investment, but did require behavioral changes by the healthcare team to ensure equitable healthcare.

Barriers to Pretransplant Immunization: A Qualitative Interview Study of Pediatric Solid Organ Transplant Stakeholders.

OBJECTIVES: To describe the experiences and beliefs of pediatric transplant stakeholders regarding factors that contribute to low pretransplant immunization rates. STUDY DESIGN: Semistructured interviews were conducted with transplant team members (hepatologists, cardiologists, nephrologists, transplant nurse coordinators, and transplant infectious diseases physicians), primary care physicians, and parents of heart, liver, and kidney transplant recipients at 3 geographically diverse large pediatric transplant centers in the US. Interviews were conducted between July 2017 and February 2020 until thematic saturation was reached within each stakeholder subgroup. Content analysis methodology was used to identify themes. RESULTS: Stakeholders participated in 30- to 60-minute interviews (16 transplant subspecialists, 3 transplant infectious diseases physicians, 11 transplant nurse coordinators, 12 primary care physicians, and 40 parents). Five central themes emerged: (1) gaps in knowledge about timing and safety of pretransplant immunizations, (2) lack of communication, coordination, and follow-up between team members regarding immunizations, (3) lack of centralized immunization records, (4) subspecialty clinic functioning as the medical home for transplant candidates but unable to provide all needed immunizations, and (5) differences between organ type in prioritization and completion of pretransplant immunization. CONCLUSIONS: There are multiple factors that contribute to low immunization rates among pediatric transplant candidates. New tools are needed to overcome these barriers and increase immunization rates in transplant candidates.

Identification of the Critical Nontechnical Skills for Surgeons Needed for High Performance in a Variable-resource Context (NOTSS-VRC).

OBJECTIVE: To identify the critical nontechnical skills (NTS) required for high performance in variable-resource contexts (VRC). BACKGROUND: As surgical training and capacity increase in low- and middle-income countries (LMICs), new strategies for improving surgical education and care in these settings are required. NTS are critical for high performance in surgery around the world. However, the essential NTS used by surgeons operating in LMICs to overcome the challenges specific to their contexts have never been described. METHOD: Using a constructivist grounded theory approach, 52 intraoperative team observations as well as 34 critical incident interviews with surgical providers (surgeons, anesthetists, and nurses) were performed at the 4 tertiary referral hospitals in Rwanda. Interview transcripts and field notes from observations were analyzed using line-by-line coding to identify emerging themes until thematic saturation was achieved. RESULTS: Four skill categories of situation awareness, decision-making, communication/teamwork, and leadership emerged. This provided the framework for a contextually informed skills taxonomy consisting of 12 skill elements with examples of specific behaviors indicative of high performance. While the main skill categories were consistent with those encountered in high-income countries, the specific behaviors associated with these skills often focused on overcoming the frequently encountered variability in resources, staff, systems support, and language in this context. CONCLUSION: This is the first description of the critical nontechnical skills, and associated example behaviors, used by surgeons in a VRC to overcome common challenges to safe and effective surgical patient care. Improvements in the NTS used by surgeons operating in VRCs have the potential to improve surgical care delivery worldwide.

Surgeons' Perceptions Toward Providing Care for Diverse Patients: The Need for Cultural Dexterity Training.

OBJECTIVE: We sought to understand the experiences of surgical residents and faculty with treating culturally diverse patients, and identify recommendations for establishing and implementing structured cultural competency training. SUMMARY BACKGROUND DATA: Cultural competency training for medical professionals could reduce healthcare disparities, yet is currently not a standard part of surgical residency training. Few studies have explored the perspectives of surgical residents and faculty on the skills needed to provide cross-cultural care. STUDY DESIGN: A purposeful sample of surgical residents and faculty from 4 academic institutions was recruited for semistructured qualitative interviews. We developed an in-depth interview guide and performed interviews to thematic saturation. Interviews were audio-recorded, transcribed, and analyzed using grounded theory methodology. RESULTS: We interviewed 16 attending surgeons and 15 surgical residents. Participant demographics were: male (51.6%), White (58.1%), Black (9.7%), Asian (22.5%), and Hispanic (9.7%). Four main themes emerged from the data: 1) aspects of culture that can inform patient care; 2) specific cultural challenges related to surgical care, including informed consent, pain management, difficult diagnoses and refusal of treatment, emergency situations, and end-of-life issues; 3) need for culturally competent care in surgery to navigate cultural differences; 4) perceived challenges and facilitators to incorporating cultural competency into the current training paradigm. CONCLUSIONS: Surgeons identified the need to provide better cross-cultural care and proposed tenets for training. Based on these findings, we suggest the development and dissemination of a cultural dexterity training program that will provide surgeons with specific knowledge and skills to care for patients from diverse sociocultural backgrounds.

Randomized comparison of a reduced-visit prenatal care model enhanced with remote monitoring.

BACKGROUND: Standard prenatal care, consisting of 12-14 visits per pregnancy, is expensive and resource intensive, with limited evidence supporting the structure, rhythm, or components of care. Some studies suggest a reduced-frequency prenatal care model is as safe as the standard model of care for low-risk pregnant women, but evidence is limited. We developed and evaluated an innovative, technology-enhanced, reduced prenatal visit model (OB Nest). OBJECTIVE: To evaluate the acceptability and effectiveness of OB Nest, a reduced-frequency prenatal care model enhanced with remote home monitoring devices and nursing support. STUDY DESIGN: A single-center randomized controlled trial, composed of pregnant women, aged 18-36 years, recruited from an outpatient obstetric tertiary academic center in the Midwest United States. OB Nest care consisted of 8 onsite appointments with an obstetric provider; 6 virtual visits consisting of phone or online communication with an assigned nurse, supplemented with fetal Doppler and sphygmomanometer home monitoring devices; and access to an online community of pregnant women. Usual care consisted of 12 prescheduled prenatal clinic appointments with obstetric providers. Acceptability of OB Nest was measured by validated surveys of patient satisfaction with care at 36 weeks; perception of stress at 14, 24, and 36 weeks; and perceived quality of care at 36 weeks of gestation. Effectiveness was analyzed by comparing adherence to the American College of Obstetricians and Gynecologists recommended routine prenatal and ancillary services, maternal and fetal safety outcomes, and healthcare utilization. RESULTS: Three hundred pregnant women at <13 weeks of gestation were recruited and randomized to OB Nest or usual care (150 in each arm) using a minimization algorithm. Demographic characteristics were similar between groups. Compared to usual care, patients in OB Nest had higher satisfaction on a 100-point validated modified Littlefield and Adams Satisfaction scale (OB Nest = 93.9% vs usual care = 78.9%, P < .01). Pregnancy-related stress, measured, on a 0-2 point PreNatal Maternal Stress validated scale, with higher scores indicating higher levels of stress, was lower among OB Nest participants at 14 weeks (OB Nest = 0.32 vs usual care = 0.41, P < .01) and at 36 weeks of gestation (OB Nest = 0.34 vs usual care = 0.40, P < .03). There was no statistical difference in perceived quality of care. Adherence to the provision of American College of Obstetricians and Gynecologists prenatal services was similar in both arms. Maternal and fetal clinical outcomes were similar between groups. Total reported nursing time was higher in OB Nest (OB Nest = 171.2 minutes vs usual care = 108.2 minutes, 95% confidence interval, 48.7-77.4). CONCLUSION: OB Nest is an innovative, acceptable, and effective reduced-frequency prenatal care model. Compared to routine prenatal care, OB Nest resulted in higher patient satisfaction and lower prenatal stress, while reducing the number of appointments with clinicians and maintaining care standards for pregnant women. This program is a step toward evidence-driven prenatal care that improves patient satisfaction.

Decision-Making About Intracranial Pressure Monitor Placement in Children With Traumatic Brain Injury.

OBJECTIVES: Little is known about how clinicians make the complex decision regarding whether to place an intracranial pressure monitor in children with traumatic brain injury. The objective of this study was to identify the decisional needs of multidisciplinary clinician stakeholders. DESIGN: Semi-structured qualitative interviews with clinicians who regularly care for children with traumatic brain injury. SETTING: One U.S. level I pediatric trauma center. SUBJECTS: Twenty-eight clinicians including 17 ICU nurses, advanced practice providers, and physicians and 11 pediatric surgeons and neurosurgeons interviewed between August 2017 and February 2018. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Participants had a mean age of 43 years (range, 30-66 yr), mean experience of 10 years (range, 0-30 yr), were 46% female (13/28), and 96% white (27/28). A novel conceptual model emerged that related the difficulty of the decision about intracranial pressure monitor placement (y-axis) with the estimated outcome of the patient (x-axis). This model had a bimodal shape, with the most difficult decisions occurring for patients who 1) had a good opportunity for recovery but whose neurologic examination had not yet normalized or 2) had a low but uncertain likelihood of neurologically functional recovery. Emergent themes included gaps in medical knowledge and information available for decision-making, differences in perspective between clinical specialties, and ethical implications of decision-making about intracranial pressure monitoring. Experienced clinicians described less difficulty with decision-making overall. CONCLUSIONS: Children with severe traumatic brain injury near perceived transition points along a spectrum of potential for recovery present challenges for decision-making about intracranial pressure monitor placement. Clinician experience and specialty discipline further influence decision-making. These findings will contribute to the design of a multidisciplinary clinical decision support tool for intracranial pressure monitor placement in children with traumatic brain injury.

Contextual Challenges to Safe Surgery in a Resource-limited Setting: A Multicenter, Multiprofessional Qualitative Study.

OBJECTIVES: Safe surgery should be available to all patients, no matter the setting. The purpose of this study was to explore the contextual-specific challenges to safe surgical care encountered by surgeons and surgical teams in many in low- and middle-income countries (LMICs), and to understand the ways in which surgical teams overcome them. BACKGROUND: Optimal surgical performance is highly complex and requires providers to integrate and communicate information regarding the patient, task, team, and environment to coordinate team-based care that is timely, effective, and safe. Resource limitations common to many LMICs present unique challenges to surgeons operating in these environments, but have never been formally described. METHODS: Using a grounded theory approach, we interviewed 34 experienced providers (surgeons, anesthetists, and nurses) at the 4 tertiary referral centers in Rwanda, to understand the challenges to safe surgical care and strategies to overcome them. Interview transcripts were coded line-by-line and iteratively analyzed for emerging themes until thematic saturation was reached. RESULTS: Rwandan-described challenges related to 4 domains: physical resources, human resources, overall systems support, and communication/language. The majority of these challenges arose from significant variability in either the quantity or quality of these domains. Surgical providers exhibited examples of resilient strategies to anticipate, monitor, respond to, and learn from these challenges. CONCLUSIONS: Resource variability rather than lack of resources underlies many contextual challenges to safe surgical care in a LMIC setting. Understanding these challenges and resilient strategies to overcome them is critical for both LMIC surgical providers and surgeons from HICs working in similar settings.

Adults with Communication Disabilities Experience Poorer Health and Healthcare Outcomes Compared to Persons Without Communication Disabilities.

BACKGROUND: Persons with speech, language, and/or voice disabilities (collectively referred to as communication disabilities (CD)) represent 10% of the US population, yet their healthcare outcomes have not been described. Generally, research shows that persons with disabilities have poorer health and healthcare outcomes than their non-disabled peers. OBJECTIVES: To examine the health and healthcare outcomes of persons with CD compared to persons without CD. DESIGN: Retrospective cohort study of the 2012 National Health Interview Survey, which contained the first supplemental questions on CD. We compared proportional differences in outcomes; logistic and ordered logistic regression assessed the outcome measures across CD categories, controlling for demographics, non-communication disabilities, and chronic conditions. Findings are weighted to permit national inferences. PARTICIPANTS: Adults (≥ 18 years old) were divided into 4 mutually exclusive groups: people with voice disabilities only; speech/language disabilities only; speech/language and voice disabilities; and people without CD. MAIN MEASURES: Chronic health conditions; self-rated health; access to care; unmet needs for care; healthcare utilization. KEY RESULTS: Adults with CD more frequently had ≥ 1 chronic condition (voice 67.9%, speech/language 68.6%, speech/language and voice 79.9%, no CD 50.1%, p < 0.001) and reported fair/poor health (voice 19.5%, speech/language 32.5%, speech/language and voice 48.3%, no CD 11.2%, p < 0.001) compared to those without CD. Adults with CD more frequently utilized healthcare compared to those without CD. However, persons with CD endorsed greater difficulties accessing care than those without CD, including identifying a usual source of care, trouble finding a physician, and delaying or foregoing care (e.g., delayed due to availability of care: voice 26.1%, speech/language 37.2%, speech/language and voice 30.8% no CD 16.1%, p < 0.001). CONCLUSIONS: Persons with CD are medically complex and experience greater challenges accessing healthcare than persons without CD. Healthcare providers need support and tools to provide equitable care that addresses the medical needs of persons with CD.

The Impact of Stigma on Community Reintegration of Veterans With Traumatic Brain Injury and the Well-Being of Their Caregivers.

OBJECTIVE: To assess the association between perceived stigma and discrimination and caregiver strain, caregiver well-being, and patient community reintegration. DESIGN: A cross-sectional survey study of 564 informal caregivers of U.S. military service veterans of wars in Iraq and Afghanistan who experienced traumatic brain injuries or polytrauma (TBI/PT). SETTING: Care settings of community-dwelling former inpatients of U.S. Department of Veterans Affairs Polytrauma Rehabilitation Centers. PARTICIPANTS: Caregivers of former inpatients (N=564), identified through next-of-kin records and subsequent nominations. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Caregiver strain, depression, anxiety, loneliness, and self-esteem; as well as care recipient community reintegration, a key aspect of TBI/PT rehabilitation. RESULTS: Family stigma was associated with strain, depression, anxiety, loneliness, lower self-esteem, and less community reintegration. Caregiver stigma-by-association was associated with strain, depression, anxiety, loneliness, and lower self-esteem. Care recipient stigma was associated with caregiver strain, depression, anxiety, loneliness, lower self-esteem, and less community reintegration. CONCLUSIONS: Perceived stigma may be a substantial source of stress for caregivers of U.S. military veterans with TBI/PT, and may contribute to poor outcomes for the health of caregivers and for the community reintegration of the veterans for whom they provide care.

Use of Accessible Examination Tables in the Primary Care Setting: A Survey of Physical Evaluations and Patient Attitudes.

BACKGROUND: Accessible diagnostic equipment, including height-adjustable examination tables, is necessary to accommodate patients with disabilities. Studies demonstrate that only a minority of clinics provide accessible equipment. For clinics with this equipment, no studies have examined the use of such equipment in routine clinical care. OBJECTIVE: In primary care clinics with and without height-adjustable examination tables, we compared the frequency and variation in physical evaluations on examination tables and patients' perceptions of quality care. DESIGN: Survey administered to patients at two primary care clinics in Rochester, MN, in 2015. One clinic had height-adjustable examination tables in every exam room; the other clinic had none. PATIENTS: A total of 399 English-speaking adult primary care patients (61% participation). MAIN MEASURES: Participants were asked whether they were physically evaluated on a table during their clinical encounter. In addition, they completed two subscales of the Patient Perception of Quality of Care survey: Perceptions of Provider's Bedside Manner and Perceptions of Provider's Work. KEY RESULTS: Overall, there were no differences between clinics in the likelihood of patients being examined on an exam table or in their perceptions of quality of care. Across both clinics, patients who reported a disability were 27% less likely to be examined on a table, were less likely to rate their provider's bedside manner favorably (74% vs. 59%) and to have positive perceptions of their provider's work (46% vs. 32%) than patients without disabilities. CONCLUSIONS: The presence of accessible medical equipment was not associated with care delivered to patients. While this might not be meaningful for most patients, it could be problematic for patients with disabilities, who are less likely to be examined. Therefore, accessible equipment alone may not be sufficient to reduce disparities in the care experience. Provider- and organization-level factors must thus be considered in efforts to provide equitable care to patients with disabilities.

Development of Patient-Centered Disability Status Questions to Address Equity in Care.

BACKGROUND: Patients with disabilities experience disparities in accessing and receiving high-quality health care services as compared to patients without disabilities. To address the disparities, health care organizations need to identify which of their patients have disabilities to track quality of care and provide appropriate health care accommodations. To date, no evidence-based sets of disability questions exist that serve these purposes. A study was conducted to identify patient-centered disability questions for health care organizations to determine which patients require health care accommodations and to track the quality of care experienced by patients with disabilities. METHODS: In the first of three phases, a focus group with patients and caregivers (N = 54) and interviews with providers (N = 15) were conducted to explore the disability questions that they believed were important. In the second phase, nationally recognized experts (N = 17) participated in a modified Delphi panel to develop a set of disability questions. The third phase entailed cognitive interviews (N = 46) with patients with and without disabilities to refine the wording of the disability questions identified through the previous rounds. RESULTS: Through the three phases, six essential questions and three additional recommended questions were identified. Questions addressed hearing, visual, motor, cognitive, communication, and learning disabilities, and the ability to conduct activities of daily living. An overall question for disabilities not included in the previous questions was also identified. CONCLUSION: Through a rigorous, three-stage process that engaged multiple stakeholders, patient-centered disability questions were identified for health care organizations to use to identify disparities within their organizations and accommodations that address these disparities.

Implementation of a new prenatal care model to reduce office visits and increase connectivity and continuity of care: protocol for a mixed-methods study.

BACKGROUND: Most low-risk pregnant women receive the standard model of prenatal care with frequent office visits. Research suggests that a reduced schedule of visits among low-risk women could be implemented without increasing adverse maternal or fetal outcomes, but patient satisfaction with these models varies. We aim to determine the effectiveness and feasibility of a new prenatal care model (OB Nest) that enhances a reduced visit model by adding virtual connections that improve continuity of care and patient-directed access to care. METHODS AND DESIGN: This mixed-methods study uses a hybrid effectiveness-implementation design in a single center randomized controlled trial (RCT). Embedding process evaluation in an experimental design like an RCT allows researchers to answer both "Did it work?" and "How or why did it work (or not work)?" when studying complex interventions, as well as providing knowledge for translation into practice after the study. The RE-AIM framework was used to ensure attention to evaluating program components in terms of sustainable adoption and implementation. Low-risk patients recruited from the Obstetrics Division at Mayo Clinic (Rochester, MN) will be randomized to OB Nest or usual care. OB Nest patients will be assigned to a dedicated nursing team, scheduled for 8 pre-planned office visits with a physician or midwife and 6 telephone or online nurse visits (compared to 12 pre-planned physician or midwife office visits in the usual care group), and provided fetal heart rate and blood pressure home monitoring equipment and information on joining an online care community. Quantitative methods will include patient surveys and medical record abstraction. The primary quantitative outcome is patient-reported satisfaction. Other outcomes include fidelity to items on the American Congress of Obstetricians and Gynecologists standards of care list, health care utilization (e.g. numbers of antenatal office visits), and maternal and fetal outcomes (e.g. gestational age at delivery), as well as validated patient-reported measures of pregnancy-related stress and perceived quality of care. Quantitative analysis will be performed according to the intention to treat principle. Qualitative methods will include interviews and focus groups with providers, staff, and patients, and will explore satisfaction, intervention adoption, and implementation feasibility. We will use methods of qualitative thematic analysis at three stages. Mixed methods analysis will involve the use of qualitative data to lend insight to quantitative findings. DISCUSSION: This study will make important contributions to the literature on reduced visit models by evaluating a novel prenatal care model with components to increase patient connectedness (even with fewer pre-scheduled office visits), as demonstrated on a range of patient-important outcomes. The use of a hybrid effectiveness-implementation approach, as well as attention to patient and provider perspectives on program components and implementation, may uncover important information that can inform long-term feasibility and potentially speed future translation. TRIAL REGISTRATION: Trial registration identifier: NCT02082275 Submitted: March 6, 2014.

Silence in the EHR: infrequent documentation of aphonia in the electronic health record.

BACKGROUND: To begin to deliver patient-centered care, providers need to be aware of when a patient has a communication disability and what communication methods to use with the patient. The aim of the study was to describe if and how patients' communication disabilities are documented within electronic health records (EHR). METHODS: A retrospective manual chart review of all inpatient and outpatient clinical encounter notes within the EHR for patients who had undergone a laryngectomy at Northwestern Memorial Hospital (Chicago, IL) between 2000-2013. We selected patients who had undergone a laryngectomy as the patient population as we were able to easily identify the patients through Common Procedural Terminology (CPT) codes. RESULTS: We identified 81 patient charts with 7484 encounter notes. Of the 81 patient charts, 58 (72%) had at least one encounter note with a communication notation. Excluding speech-language pathology notes, 1164 (16%) of all encounter notes included some notation of the patients' communication abilities. We coded the communication notations into four categories. 1) Descriptions of communication abilities appeared in 663 (9%) of all encounter notes, 2) descriptions of communication methods appeared in 590 (8%) of all encounter notes, and the last two categories 3) medical management and 4) referrals to speech-language pathology services each appeared in 148 (2%) of all encounter notes. While all patients had the same type of communication disability, aphonia, providers used 39 different terms and phrases to describe aphonia. CONCLUSIONS: Patients' communication abilities were infrequently documented in the EHR. When providers did document a patient's communication disability or method, they used inconsistent descriptions, suggesting a lack of standardized language. Further work is needed to determine how to consistently and accurately document patients' communication abilities so staff and providers can quickly recognize how best to communicate with patients with communication disabilities.

Documentation of Disability Status and Accommodation Needs in the Electronic Health Record: A Qualitative Study of Health Care Organizations' Current Practices.

BACKGROUND: This qualitative study aimed to understand how early adopting health care organizations (HCOs) implement the documentation of patients' disability status and accommodation needs in the electronic health record (EHR). METHODS: The authors conducted qualitative interviews with HCOs that had active or past initiatives to implement systematic collection of disability status in the EHR. The interviews elicited participants' current experiences, desired features of a standard EHR build, and challenges and successes. A team-based analysis approach was used to review and summarize quotations to identify themes and categorize text that exemplified identified themes. RESULTS: Themes identified from the interviews included "why" organizations collected disability status; of "what" their EHR build consisted, including who collected, how often data were collected, and what data were collected; and "how" organizations were implementing systematic collection. The main purpose for collection of disability status and accommodation needs was to prepare for patients with disabilities. Due to this priority, participants believed collection should (1) occur prior to patients' clinical encounters, (2) be conducted regularly, (3) use standardized language, and (4) be available in a highly visible location in the EHR. Leadership support to integrate collection into existing workflows was essential for success. CONCLUSION: Patients with disabilities experience significant disparities in the receipt of equitable health care services. To provide equitable care, HCOs need to systematically collect disability status and accommodation needs in the EHR to ensure that they are prepared to provide equitable care to all patients with disabilities.

How Health Care Organizations Are Implementing Disability Accommodations for Effective Communication: A Qualitative Study.

BACKGROUND: Prior studies have documented that, despite federal mandates, clinicians infrequently provide accommodations that enable equitable health care engagement for patients with communication disabilities. To date, there has been a paucity of empirical research describing the organizational approach to implementing these accommodations. The authors asked US health care organizations how they were delivering these accommodations in the context of clinical care, what communication accommodations they provided, and what disability populations they addressed. METHODS: In this study, 19 qualitative interviews were conducted with disability coordinators representing 15 US health care organizations actively implementing communication accommodations. A conventional qualitative content analysis approach was used to code the data and derive themes. RESULTS: The authors identified three major themes related to how US health care organizations are implementing the provision of this service: (1) Operationalizing the delivery of communication accommodations in health care required executive leadership support and preparatory work at clinic and organization levels; (2) The primary focus of communication accommodations was sign language interpreter services for Deaf patients and, secondarily, other hearing- and visual-related accommodations; and (3) Providing communication accommodations for patients with speech and language and cognitive disabilities was less frequent, but when done involved more than providing a single aid or service. CONCLUSION: These findings suggest that, in addition to individual clinician efforts, there are organization-level factors that affect consistent provision of communication accommodations across the full range of communication disabilities. Future research should investigate these factors and test targeted implementation strategies to promote equitable access to health care for all patients with communication disabilities.

Identifying Decisional Needs for Adult Tracheostomy and Prolonged Mechanical Ventilation Decision Making to Inform Shared Decision-Making Interventions.

BACKGROUND: Decision making for adult tracheostomy and prolonged mechanical ventilation is emotionally complex. Expectations of surrogate decision makers and physicians rarely align. Little is known about what surrogates need to make goal-concordant decisions. Currently, little is known about the decisional needs of surrogates and providers, impeding efforts to improve the decision-making process. METHODS: Using a thematic analysis approach, we performed a qualitative study with semistructured interviews with surrogates of adult patients receiving mechanical ventilation (MV) being considered for tracheostomy and physicians routinely caring for patients receiving MV. Recruitment was stopped when thematic saturation was reached. We describe the decision-making process, identify core decisional needs, and map the process and needs for possible elements of a future shared decision-making tool. RESULTS: Forty-three participants (23 surrogates and 20 physicians) completed interviews. Hope, Lack of Knowledge Data, and Uncertainty emerged as the 3 main themes that described the decision-making process and were interconnected with one another and, at times, opposed each other. Core decisional needs included information about patient wishes, past activity/medical history, short- and long-term outcomes, and meaningful recovery. The themes were the lens through which the decisional needs were weighed. Decision making existed as a balance between surrogate emotions and understanding and physician recommendations. CONCLUSIONS: Tracheostomy and prolonged MV decision making is complex. Hope and Uncertainty were conceptual themes that often battled with one another. Lack of Knowledge & Data plagued both surrogates and physicians. Multiple tangible factors were identified that affected surrogate decision making and physician recommendations. IMPLICATIONS: Understanding this complex decision-making process has the potential to improve the information provided to surrogates and, potentially, increase the goal-concordant care and alignment of surrogate and physician expectations. HIGHLIGHTS: Decision making for tracheostomy and prolonged mechanical ventilation is a complex interactive process between surrogate decision makers and providers.Qualitative themes of Hope, Uncertainty, and Lack of Knowledge & Data shared by both providers and surrogates were identified and described the decision-making process.Concrete decisional needs of patient wishes, past activity/medical history, short- and long-term outcomes, and meaningful recovery affected each of the larger themes and represented key information from which surrogates and providers based decisions and recommendations.The qualitative themes and decisional needs identified provide a roadmap to design a shared decision-making intervention to improve adult tracheostomy and prolonged mechanical ventilation decision making.