Assessing Student Readiness to Work with People Who Use Drugs: Development of a Multi-disciplinary Addiction Educational Survey.

BACKGROUND: As health profession schools implement addiction curricula, they need survey instruments to evaluate the impact of the educational interventions. However, existing measures do not use current non-stigmatizing language and fail to capture core concepts. OBJECTIVE: To develop a brief measure of health profession student readiness to work with people who use drugs (PWUDs) and establish its content validity. METHODS: We conducted a literature review of existing instruments and desired clinical competencies related to providing care to PWUD and used results and expert feedback to create and revise a pool of 72 items. We conducted cognitive interviews with ten pre-clinical health profession students from various US schools of nursing, pharmacy, and medicine to ensure the items were easy to understand. Finally, we used a modified Delphi process with twenty-four health professions educators and addiction experts (eight each from nursing, pharmacy, and medicine) to select items for inclusion in the final scale. We analyzed expert ratings of individual items and interdisciplinary agreement on ratings to decide how to prioritize items. We ultimately selected 12 attitudes and 12 confidence items to include in the REadiness to Discuss Use, Common Effects, and HArm Reduction Measure (REDUCE-HARM). Experts rated their overall assessment of the final scale. RESULTS: Twenty-two of twenty-four experts agreed or strongly agreed that the attitudes scale measures student attitudes that impact readiness to work with PWUDs. Twenty-three of twenty-four experts agreed or strongly agreed that the confidence scale measures student self-efficacy in competencies that impact readiness to work with PWUDs. Seven of 72 initial items and none of the 24 selected items had statistically significant differences between disciplines. CONCLUSIONS: The REDUCE-HARM instrument has strong content validity and may serve as a useful tool in evaluating addiction education. Additional research is needed to establish its reliability, construct validity, and responsiveness to change.

"The SUMMIT Team is All I Got": perspectives of medically and socially complex patients seen in intensive primary care.

Context: There is great interest in intensive primary care (IPC) interventions to address the needs of medically and socially complex patients, however it is unknown how these interventions impact patient experience. Objective: Describe the experience of patients on the Streamlined Unified Meaningfully Managed Interdisciplinary Team (SUMMIT), an IPC for patients with complex needs at a federally qualified health center serving patients with high rates of homelessness. Study Design: Qualitative study using semi-structured interviews with 25 patients enrolled in the SUMMIT intervention. We conducted a thematic analysis using a hybrid inductive/deductive approach. Results: Prior to SUMMIT, patients often felt it was difficult to engage with the healthcare system, in part due to their complex medical conditions, but also factors including prior trauma, poverty, substance use, and providers' stigma. We identified four themes related to how and why patients felt SUMMIT improved their care: 1) Investment: Patients perceived the team as truly invested in them and expressed how the team walked side by side in their care journeys to overcome stigma, low-self efficacy, and prior negative experiences with the healthcare system 2) Family: Patients reported feeling a strong sense of family with SUMMIT team members and believed that the team had genuine duty and obligation toward them, interacting with them in a non-judgmental, culturally competent manner. 3) Feeling valued: Patients expressed that the team's flexible design, continuity of team membership, care coordination and addressing unmet needs and social determinants led them to feel valued and hope. 4) Evolution of self-efficacy: Patients experienced improved self-efficacy, and were able to engage with health care proactively, instead of avoiding care. Conclusion: Medically and socially complex patients experience trauma and stigma that shape perceptions of care. Patients appreciated humanizing interactions with team members along with the additional support SUMMIT provided to overcome barriers to care. They spoke of the team as family members who valued them and they recognized how the program had helped them take a more active role in improving their own health. Our findings suggest that effectiveness of IPC interventions may lie, in part, on the use of team members who have the skills and commitment to deliver non-judgemental, culturally competent, longitudinal relationship-focused care.

The Importance of "Being There": a Qualitative Study of What Veterans with Depression Want in Social Support.

BACKGROUND: Social connectedness exerts strong influences on health, including major depression and suicide. A major component of social connectedness is having individual relationships with close supports, romantic partners, and other trusted members of one's social network. OBJECTIVE: The objective of this study was to understand how individuals' relationships with close supports might be leveraged to improve outcomes for primary care patients with depression and at risk for suicide. DESIGN: In this qualitative study, we used a semi-structured interview guide to probe patient experiences, views, and preferences related to social support. PARTICIPANTS: We conducted interviews with 30 primary care patients at a Veterans Health Administration (VA) medical center who had symptoms of major depression and a close support. APPROACH: Thematic analysis of qualitative interview data examined close supports' impact on patients. We iteratively developed a codebook, used output from codes to sort data into themes, and selected quotations that exemplified themes for inclusion in this manuscript. KEY RESULTS: "Being there" as an important quality of close supports emerged as a key concept. "Being there" was defined in three ways: physical proximity, frequent or responsive contact, or perceived availability. Close supports who were effective at "being there" possessed skills in intuitively sensing the patient's emotional state and communicating indirectly about depression. Three major barriers to involving close supports in depression care were concerns of overburdening the close support, a perception that awareness of the patient's depression would make the close support unnecessarily worried, and a desire and preference among patients to handle depression on their own. CONCLUSIONS: "Being there" represents a novel, patient-generated way to conceptualize and talk about social support. Suicide prevention initiatives such as population-level communication campaigns might be improved by incorporating language used by patients and addressing attitudinal barriers to allowing help and involvement of close supports.

Recommendations for integrating peer mentors in hospital-based addiction care.

Legislators and health systems have recently begun to explore the use of peer mentors as part of hospital-based addiction teams. Integrating peers into hospitals is a complex undertaking still in its infancy. Peers' lived experience of addiction and its consequences, combined with their distance from medical culture and hierarchy, is at the core of their power - and creates inherent challenges in integrating peers into hospital settings. Successful integration of peers in hospitals has unique challenges for individual providers, health systems, and the peers themselves. We have included peers as part of a hospital-based addiction medicine team at our hospital since 2015. In this article, we outline some unique challenges, share lessons learned, and provide recommendations for integrating peers into hospital-based SUD care. Challenges include the rigid professional hierarchy of hospitals which contrasts with peers' role, which is built on shared life experience and relationship; different expectations regarding professional boundaries and sharing personal information; the intensity of the hospital environment; and, illness severity of hospitalized people which can be emotionally draining and increase peers' own risk for relapse. Recommendations focus on establishing a way to finance the peer program, clearly defining the peer role, creating a home base within hospital settings, creating a collaborative and structured process for hiring and retaining peers, identifying peers who are likely to succeed, providing initial and ongoing training to peers that extends beyond typical peer certification, ways to introduce peer program to hospital staff, and providing regular, meaningful supervision. We hope that our recommendations help other hospital systems capitalize on the practical lessons learned from our experience.

"If It Wasn't for Him, I Wouldn't Have Talked to Them": Qualitative Study of Addiction Peer Mentorship in the Hospital.

BACKGROUND: Hospitalizations related to substance use disorders (SUD) are skyrocketing. Hospital providers commonly feel unprepared to care for patients with SUD and patients with SUD commonly feel discriminated against by hospital staff. This tension can lead to provider burnout and poor patient outcomes. Research in ambulatory settings suggests that peer mentors (PMs) can improve substance use outcomes and patient experience. However, no study has examined the role of peer mentorship for patients with SUD in hospitals. OBJECTIVE: Understand how peer mentorship affects care for hospitalized patients with SUD, and how working in a hospital affects PMs' sense of professional identity. DESIGN: Qualitative study utilizing participant observation, individual interviews, and focus groups related to the PM component of the Improving Addiction Care Team (IMPACT), a hospital-based interprofessional addiction medicine consult service. PARTICIPANTS: IMPACT providers, patients seen by IMPACT, PMs, and a PM supervisor. APPROACH: Qualitative thematic analysis. KEY RESULTS: PMs occupy a unique space in the hospital and are able to form meaningful relationships with hospitalized patients based on trust and shared lived experiences. PMs facilitate patient care by contextualizing patient experiences to teams and providers. Reciprocally, PMs "translate" provider recommendations to patients in ways that patients can hear. Respondents described PMs as "cultural brokers" who have the potential to transfer trust that they have earned with patients to providers and systems who may otherwise be viewed as untrustworthy. While PMs felt their role led to professional and personal development, the intensity of the role in the hospital setting also put them at risk for emotional drain and stress. CONCLUSIONS: While integrating PMs into hospital care presents substantial challenges, PMs may act as a "secret weapon" to engage often marginalized hospitalized patients with SUD and improve patient and provider experience.

Access to HIV Pre-exposure Prophylaxis in Practice Settings: a Qualitative Study of Sexual and Gender Minority Adults' Perspectives.

BACKGROUND: Sexual and gender minority (SGM) populations remain at disproportionate risk of HIV infection. Despite the effectiveness of pre-exposure prophylaxis (PrEP) in preventing HIV, PrEP uptake has been slow. OBJECTIVE: To identify barriers and facilitators of PrEP access by examining SGM patients' experiences with accessing health care systems and engaging with providers about PrEP in a variety of practice settings. DESIGN: Semi-structured, individual, qualitative interviews. PARTICIPANTS: Twenty-seven sexual and gender minority adults residing in Oregon. APPROACH: Interviews were audio-recorded, transcribed, and analyzed using thematic analysis. KEY RESULTS: We identified three main themes. Participants described the centrality of patient-provider relationships to positive experiences around PrEP, the necessity of personally advocating to access PrEP, and the experience of system-level barriers to PrEP access. Participants also made several suggestions to improve PrEP access including improving provider engagement with SGM patients, encouraging providers to initiate conversations about PrEP, and increasing awareness of medication financial support. CONCLUSIONS: In order to reduce HIV disparities, improving PrEP access will require additional efforts by providers and resources across health care settings to reduce barriers. Interventions to improve provider education about PrEP and provider communication skills for discussing sexual health are needed. Additionally, there should be system-level improvements to increase coordination between patients, providers, pharmacies, and payers to facilitate PrEP access and uptake.

Inpatient Addiction Medicine Consultation and Post-Hospital Substance Use Disorder Treatment Engagement: a Propensity-Matched Analysis.

BACKGROUND: Hospitalizations due to medical and surgical complications of substance use disorder (SUD) are rising. Most hospitals lack systems to treat SUD, and most people with SUD do not engage in treatment after discharge. OBJECTIVE: Determine the effect of a hospital-based addiction medicine consult service, the Improving Addiction Care Team (IMPACT), on post-hospital SUD treatment engagement. DESIGN: Cohort study using multivariable analysis of Oregon Medicaid claims comparing IMPACT patients with propensity-matched controls. PARTICIPANTS: 18-64-year-old Oregon Medicaid beneficiaries with SUD, hospitalized at an Oregon hospital between July 1, 2015, and September 30, 2016. IMPACT patients (n = 208) were matched to controls (n = 416) using a propensity score that accounted for SUD, gender, age, race, residence region, and diagnoses. INTERVENTIONS: IMPACT included hospital-based consultation care from an interdisciplinary team of addiction medicine physicians, social workers, and peers with lived experience in recovery. IMPACT met patients during hospitalization; offered pharmacotherapy, behavioral treatments, and harm reduction services; and supported linkages to SUD treatment after discharge. OUTCOMES: Healthcare Effectiveness Data and Information Set (HEDIS) measure of SUD treatment engagement, defined as two or more claims on two separate days for SUD care within 34 days of discharge. RESULTS: Only 17.2% of all patients were engaged in SUD treatment before hospitalization. IMPACT patients engaged in SUD treatment following discharge more frequently than controls (38.9% vs. 23.3%, p < 0.01; aOR 2.15, 95% confidence interval [CI] 1.29-3.58). IMPACT participation remained associated with SUD treatment engagement when limiting the sample to people who were not engaged in treatment prior to hospitalization (aOR 2.63; 95% CI 1.46-4.72). CONCLUSIONS: Hospital-based addiction medicine consultation can improve SUD treatment engagement, which is associated with reduced substance use, mortality, and other important clinical outcomes. National expansion of such models represents an opportunity to address an enduring gap in the SUD treatment continuum.

"It's Like Riding Out the Chaos": Caring for Socially Complex Patients in an Ambulatory Intensive Care Unit (A-ICU).

PURPOSE: High-need high-cost (HNHC) patients consume a large proportion of health resources but often receive suboptimal care in traditional primary care. Intensive ambulatory care interventions attempt to better meet these patients' needs, but we know little about how teams delivering these interventions in clinics serving socially complex patient populations perceive their work. METHODS: We performed a qualitative study of multidisciplinary staff experiences at a Federally Qualified Health Center (FQHC) caring for predominantly homeless HNHC patients in the context of an ongoing implementation of an ambulatory intensive care unit (A-ICU) intervention. We conducted semistructured interviews with 9 ambulatory intensive care team members and 6 "usual care" members. We conducted a thematic analysis, using an inductive approach, at a semantic level. RESULTS: Staff viewed complexity as a combination of social, behavioral, and medical challenges that lead to patient-health care system mismatch. Staff perceive the following as key ingredients in caring for HNHC patients: addressing both psychosocial and clinical needs together; persistence in staying connected to patients through chaotic periods; shared commitment and cohesion among interdisciplinary team members; and flexibility to tailor care to patients' individual situations. Participants' definitions of success focused more on improving patient engagement than reducing utilization or cost. CONCLUSION: FQHC staff working with HNHC patients perceive mismatch between the health care system and patients' clinical and social needs as the key driver of poor outcomes for these patients. Intensive ambulatory care teams may bridge mismatch through provision of psychosocial supports, flexible care delivery, and fostering team cohesion to support patient engagement.

Help-Seeking on Facebook Versus More Traditional Sources of Help: Cross-Sectional Survey of Military Veterans.

BACKGROUND: The media has devoted significant attention to anecdotes of individuals who post messages on Facebook prior to suicide. However, it is unclear to what extent social media is perceived as a source of help or how it compares to other sources of potential support for mental health problems. OBJECTIVE: This study aimed to evaluate the degree to which military veterans with depression use social media for help-seeking in comparison to other more traditional sources of help. METHODS: Cross-sectional self-report survey of 270 adult military veterans with probable major depression. Help-seeking intentions were measured with a modified General Help-Seeking Questionnaire. Facebook users and nonusers were compared via t tests, Chi-square, and mixed effects regression models. Associations between types of help-seeking were examined using mixed effects models. RESULTS: The majority of participants were users of social media, primarily Facebook (n=162). Mean overall help-seeking intentions were similar between Facebook users and nonusers, even after adjustment for potential confounders. Facebook users were very unlikely to turn to Facebook as a venue for support when experiencing either emotional problems or suicidal thoughts. Compared to help-seeking intentions for Facebook, help-seeking intentions for formal (eg, psychologists), informal (eg, friends), or phone helpline sources of support were significantly higher. Results did not substantially change when examining users of other social media, women, or younger adults. CONCLUSIONS: In its current form, the social media platform Facebook is not seen as a venue to seek help for emotional problems or suicidality among veterans with major depression in the United States.

Lessons learned from the implementation of a medically enhanced residential treatment (MERT) model integrating intravenous antibiotics and residential addiction treatment.

BACKGROUND: Hospitalizations for severe infections associated with substance use disorder (SUD) are increasing. People with SUD often remain hospitalized for many weeks instead of completing intravenous antibiotics at home; often, they are denied skilled nursing facility admission. Residential SUD treatment facilities are not equipped to administer intravenous antibiotics. We developed a medically enhanced residential treatment (MERT) model integrating residential SUD treatment and long-term IV antibiotics as part of a broader hospital-based addiction medicine service. MERT had low recruitment and retention, and ended after six months. The goal of this study was to describe the feasibility and acceptability of MERT, to understand implementation factors, and explore lessons learned. METHODS: We conducted a mixed-methods evaluation. We included all potentially eligible MERT patients, defined by those needing ≥2 weeks of intravenous antibiotics discharged from February 1 to August 1, 2016. We used chart review to identify diagnoses, antibiotic treatment location, and number of recommended and actual IV antibiotic-days completed. We audio-recorded and transcribed key informant interviews with patients and staff. We conducted an ethnographic analysis of interview transcripts and implementation field notes. RESULTS: Of the 45 patients needing long-term intravenous antibiotics, 18 were ineligible and 20 declined MERT. 7 enrolled in MERT and three completed their recommended intravenous antibiotic course. MERT recruitment barriers included patient ambivalence towards residential treatment, wanting to prioritize physical health needs, and fears of untreated pain in residential. MERT retention barriers included high demands of residential treatment, restrictive practices due to PICC lines, and perceptions by staff and other residents that MERT patients "stood out" as "different." Despite the challenges, key informants felt MERT was a positive construct. CONCLUSIONS: Though MERT had many possible advantages; it proved more challenging to implement than anticipated. Our lessons may be applicable to future models integrating post-hospital intravenous antibiotics and SUD care.

"It's been an Experience, a Life Learning Experience": A Qualitative Study of Hospitalized Patients with Substance Use Disorders.

BACKGROUND: Individuals with substance use disorders (SUD) have high rates of chronic illness and readmission, yet few are engaged in addiction treatment. Hospitalization may be a reachable moment for initiating and coordinating addiction care, but little is known about motivation for change in the inpatient setting. OBJECTIVE: To explore the experiences of hospitalized adults with SUD and to better understand patient and system level factors impacting readiness for change. DESIGN: We performed a qualitative study using individual interviews. The study was nested within a larger mixed-methods needs assessment. PARTICIPANTS AND SETTING: Hospitalized adults admitted to medical or surgical units at an urban academic medical center who reported high-risk alcohol or drug use on AUDIT-C or single-item drug use screener. APPROACH: We conducted a thematic analysis, using an inductive approach at a semantic level. KEY RESULTS: Thirty-two patients participated. The mean age was 43 years; 75% were men, and 68% identified as white. Participants reported moderate to high-risk alcohol (39%), amphetamine (46%), and opioid (65%) use. Emergent themes highlight the influence of hospitalization at the patient, provider, and health system levels. Many patients experienced hospitalization as a wake-up call, where mortality was motivation for change and hospitalization disrupted substance use. However, many participants voiced complex narratives of social chaos, trauma, homelessness, and chronic pain. Participants valued providers who understood SUD and the importance of treatment choice. Patient experience suggests the importance of peers in the hospital setting, access to medication-assisted treatment, and coordinated care post-discharge. CONCLUSIONS: This study supports that hospitalization offers an opportunity to initiate and coordinate addiction care, and provides insights into patient, provider, and health system factors which can leverage the reachability of this moment.

A Qualitative Examination of Pain Centrality Among Veterans of Iraq and Afghanistan Conflicts.

Objective: Centrality of pain refers to the degree to which a patient views chronic pain as integral to his or her life or identity. The purpose of this study was to gain a richer understanding of pain centrality from the perspective of patients who live with chronic pain. Methods: Face-to-face interviews were conducted with 26 Veterans with chronic and disabling musculoskeletal pain after completing a stepped care intervention within a randomized controlled trial. Qualitative data were analyzed using an immersion/crystallization approach. We evaluated the role centrality plays in Veterans' lives and examined whether and how their narratives differ when centrality either significantly decreases or increases after participation in a stepped care intervention for chronic pain. Results: Our data identified three emergent themes that characterized pain centrality: 1) control, 2) acceptance, and 3) preoccupation. We identified five characteristics that distinguished patients' changes in centrality from baseline: 1) biopsychosocial viewpoint, 2) activity level, 3) pain communication, 4) participation in managing own pain, and 5) social support. Conclusions: This study highlights centrality of pain as an important construct to consider within the overall patient experience of chronic pain.

The Development and Evaluation of an Online Healthcare Toolkit for Autistic Adults and their Primary Care Providers.

BACKGROUND: The healthcare system is ill-equipped to meet the needs of adults on the autism spectrum. OBJECTIVE: Our goal was to use a community-based participatory research (CBPR) approach to develop and evaluate tools to facilitate the primary healthcare of autistic adults. DESIGN: Toolkit development included cognitive interviewing and test-retest reliability studies. Evaluation consisted of a mixed-methods, single-arm pre/post-intervention comparison. PARTICIPANTS: A total of 259 autistic adults and 51 primary care providers (PCPs) residing in the United States. INTERVENTIONS: The AASPIRE Healthcare toolkit includes the Autism Healthcare Accommodations Tool (AHAT)-a tool that allows patients to create a personalized accommodations report for their PCP-and general healthcare- and autism-related information, worksheets, checklists, and resources for patients and healthcare providers. MAIN MEASURES: Satisfaction with patient-provider communication, healthcare self-efficacy, barriers to healthcare, and satisfaction with the toolkit's usability and utility; responses to open-ended questions. KEY RESULTS: Preliminary testing of the AHAT demonstrated strong content validity and adequate test-retest stability. Almost all patient participants (>94 %) felt that the AHAT and the toolkit were easy to use, important, and useful. In pre/post-intervention comparisons, the mean number of barriers decreased (from 4.07 to 2.82, p < 0.0001), healthcare self-efficacy increased (from 37.9 to 39.4, p = 0.02), and satisfaction with PCP communication improved (from 30.9 to 32.6, p = 0.03). Patients stated that the toolkit helped clarify their needs, enabled them to self-advocate and prepare for visits more effectively, and positively influenced provider behavior. Most of the PCPs surveyed read the AHAT (97 %), rated it as moderately or very useful (82 %), and would recommend it to other patients (87 %). CONCLUSIONS: The CBPR process resulted in a reliable healthcare accommodation tool and a highly accessible healthcare toolkit. Patients and providers indicated that the tools positively impacted healthcare interactions. The toolkit has the potential to reduce barriers to healthcare and improve healthcare self-efficacy and patient-provider communication.

A chronic opioid therapy dose reduction policy in primary care.

BACKGROUND: High-dose opioids prescribed for the treatment of chronic pain have been associated with increased risk of opioid overdose. Health systems and states have responded by developing opioid dose limitation policies. Little is known about how these policies affect prescribing practices or characteristics of patients who respond best to opioid tapers from high-dose opioids. METHODS: We conducted a retrospective cohort study to evaluate change in total opioid dose after the implementation of a provider education intervention and a 120 mg morphine equivalents per day (MED) opioid dose limitation policy in one academic primary care clinic. We compared opioid prescriptions 1 year before and 1 year after the intervention. We used univariate and multivariate logistic regression to assess which patient characteristics predicted opioid dose reduction from high opioid dose. RESULTS: Out of a total of 516 patients prescribed chronic opioid therapy, 116 patients (22%) were prescribed high-dose opioid therapy (>120 mg MED). After policy adoption, the average daily dose of opioids declined by 64 mg MED (95% confidence interval [CI]: 32-96; P < .001) and 41 patients (37%) on high-dose opioids tapered their doses below 120 mg MED (Tapered to Safer Dose group). In multivariate analyses, female sex was the only significant association with dose taper; female patients were less likely to taper to a safer dose (adjusted odds ratio [aOR] = 0.28, 95% CI: 0.11-0.70). CONCLUSIONS: A combined intervention of education and a practice policy that limits opioid doses for patients prescribed chronic opioid therapy may be an important component of system-level strategies to reduce opioid misuse and overdose; it may also help identify patients suitable for medication-assisted treatment for opioid use disorder. Specific strategies may be needed to assist women with opioid dose tapers.

Getting performance metrics right: a qualitative study of staff experiences implementing and measuring practice transformation.

BACKGROUND: Quality improvement is a central goal of the patient-centered medical home (PCMH) model, and requires the use of relevant performance measures that can effectively guide comprehensive care improvements. Existing literature suggests performance measurement can lead to improvements in care quality, but may also promote practices that are detrimental to patient care. Staff perceptions of performance metric implementation have not been well-researched in medical home settings. OBJECTIVE: To describe primary care staff (clinicians and other staff) experiences with the use of performance metrics during the implementation of the Veterans Health Administration's (VHA) Patient Aligned Care Team (PACT) model of care. DESIGN: Observational qualitative study; data collection using role-stratified focus groups and semi-structured interviews. PARTICIPANTS: Two hundred and forty-one of 337 (72 %) identified primary care clinic staff in PACT team and clinic administrative/other roles, from 15 VHA clinics in Oregon and Washington. APPROACH: Data coded and analyzed using conventional content analysis techniques. KEY RESULTS: Primary care staff perceived that performance metrics: 1) led to delivery changes that were not always aligned with PACT principles, 2) did not accurately reflect patient-priorities, 3) represented an opportunity cost, 4) were imposed with little communication or transparency, and 5) were not well-adapted to team-based care. CONCLUSIONS: Primary care staff perceived responding to performance metrics as time-consuming and not consistently aligned with PACT principles of care. The gaps between the theory and reality of performance metric implementation highlighted by PACT team members are important to consider as the medical home model is more widely implemented.

"We've not gotten even close to what we want to do": a qualitative study of early patient-centered medical home implementation.

BACKGROUND: The Veterans Health Administration (VA) Patient Aligned Care Teams (PACT) initiative is designed to deliver a medical home model of care associated with better patient outcomes, but success will depend in part on the model's acceptability and sustainability among clinic employees. OBJECTIVE: We sought to identify key themes in the experience of primary care providers, nurse care managers, clerical and clinical associates, and clinic administrators implementing PACT, with the aim of informing recommendations for continued development of the model and its components. DESIGN: Observational qualitative study; data collection from 2010 to 2013, using role-stratified and team focus groups and semi-structured interviews. PARTICIPANTS: 241 of 337 (72 %) identified primary care clinic employees in PACT team or administrative roles, from 15 VA clinics in Oregon and Washington. APPROACH: Data coded and analyzed using conventional content analysis techniques. KEY RESULTS: Overall, participants were enthusiastic about the PACT concept, but felt necessary resources for success were not yet in place. Well-functioning teams were perceived as key to successful implementation. Development of such teams depended on adequate staffing, training, and dedicated time for team development. Changes within the broader VA system were also seen as necessary, including devolving greater control to the clinic level and improving system alignment with the PACT model. PACT advocates from among clinic and institutional level leadership were identified as a final key ingredient for success. These themes were consistent despite differences in clinic settings and characteristics. CONCLUSIONS: PACT implementation faced significant challenges in its early years. Realizing PACT's transformative potential will require acting on the needs identified by clinic workers in this study: ensuring adequate staffing in all team roles, devoting resources to in-depth training for all employees in communication and other skills needed to maximize team success, and aligning the broader VA hospital system with PACT's decentralized, team-based approach.

NICU Parent and Staff Advocacy to Address Parental Mental Health.

Parents of infants requiring neonatal intensive care unit (NICU) hospitalization often experience increased rates of distress, trauma, and perinatal mood disorders. Untreated parental mental health conditions have short- and long-term effects for infants and families. While some NICUs provide varying degrees of mental health supports for NICU families, these services are not universally or systematically integrated in US NICUs. Multiple factors contribute to this gap in care, including mental health stigma, funding constraints, and lack of staff training and capacity. In an effort to address this gap, we used a participatory action research approach, guided by a Patient and Stakeholder Engagement model, to partner with graduate NICU parents and patient-facing NICU staff to identify parental mental health needs and ideas to address them. Through efforts to mitigate power differentials and engage parents as research and program development partners, our work shaped NICU practices, programming, and subsequent research.

Measurement matters: A commentary on the state of the science on patient reported outcome measures (PROMs) in autism research.

High quality science relies upon psychometrically valid and reliable measurement, yet very few Patient Reported Outcome Measures (PROMs) have been developed or thoroughly validated for use with autistic individuals. The present commentary summarizes the current state of autism PROM science, based on discussion at the Special Interest Group (SIG) at the 2022 International Society for Autism Research (INSAR) Annual Meeting and collective expertise of the authors. First, we identify current issues in autism PROM research including content and construct operationalization, informant-structure, measure accessibility, and measure validation and generalization. We then enumerate barriers to conducting and disseminating this research, such as a lack of guidance, concerns regarding funding and time, lack of accessible training and professionals with psychometric skills, difficulties collecting large representative samples, and challenges with dissemination. Lastly, we offer future priorities and resources to improve PROMs in autism research including a need to continue to evaluate and develop PROMs for autistic people using robust methods, to prioritize diverse and representative samples, to expand the breadth of psychometric properties and techniques, and to consider developing field specific guidelines. We remain extremely optimistic about the future directions of this area of autism research. This work is well positioned to have an immense, positive impact on our scientific understanding of autism and the everyday lives of autistic people and their families.

Comparison of healthcare experiences in autistic and non-autistic adults: a cross-sectional online survey facilitated by an academic-community partnership.

BACKGROUND: Little is known about the healthcare experiences of adults on the autism spectrum. Moreover, autistic adults have rarely been included as partners in autism research. OBJECTIVE: To compare the healthcare experiences of autistic and non-autistic adults via an online survey. METHODS: We used a community-based participatory research (CBPR) approach to adapt survey instruments to be accessible to autistic adults and to conduct an online cross-sectional survey. We assessed preliminary psychometric data on the adapted scales. We used multivariate analyses to compare healthcare experiences of autistic and non-autistic participants. RESULTS: Four hundred and thirty-seven participants completed the survey (209 autistic, 228 non-autistic). All adapted scales had good to excellent internal consistency reliability (alpha 0.82-0.92) and strong construct validity. In multivariate analyses, after adjustment for demographic characteristics, health insurance, and overall health status, autistic adults reported lower satisfaction with patient-provider communication (beta coefficient -1.9, CI -2.9 to -0.9), general healthcare self-efficacy (beta coefficient -11.9, CI -14.0 to -8.6), and chronic condition self-efficacy (beta coefficient -4.5, CI -7.5 to -1.6); higher odds of unmet healthcare needs related to physical health (OR 1.9 CI 1.1-3.4), mental health (OR 2.2, CI 1.3-3.7), and prescription medications (OR 2.8, CI 2.2-7.5); lower self-reported rates of tetanus vaccination (OR 0.5, CI 0.3-0.9) and Papanicolaou smears (OR 0.5, CI 0.2-0.9); and greater odds of using the emergency department (OR 2.1, CI 1.8-3.8). CONCLUSION: A CBPR approach may facilitate the inclusion of people with disabilities in research by increasing researchers' ability to create accessible data collection instruments. Autistic adults who use the Internet report experiencing significant healthcare disparities. Efforts are needed to improve the healthcare of autistic individuals, including individuals who may be potentially perceived as having fewer disability-related needs.