A Social Network Analysis of a Multi-sector Service System for Intimate Partner Violence in a Large US City.

About one in four women in the US report having experienced some form of intimate partner violence (IPV) during their lifetime and an estimated 15.5 million children live in families in which IPV occurred in the past year. Families of young children with IPV experiences often face complex needs and require well-coordinated efforts among service providers across social and health sectors. One promising partnership aims to support pregnant and parenting IPV survivors through coordination between IPV agencies and community-based maternal and early childhood home visiting programs. This study used social network analysis (SNA) to understand the interconnectedness of the system of IPV prevention and intervention for families with young children in a large US city. The SNA included 43 agencies serving this population across various service domains spanning IPV, legal, maternal and child health, and public benefit programs. An SNA survey collected data on four forms of collaboration between agencies, including formal administrative relationship, referral reciprocity, case consultation, and shared activities in community committees/organizing bodies. Density and centrality were the primary outcomes of interest. A community detection analysis was performed as a secondary analysis. The overall level of interconnectedness between the 43 responding agencies was low. Making referrals to each other was the most common form of collaboration, with a network density of 30%. IPV agencies had the highest average number of connections in the networks. There was a high level of variation in external collaborations among home visiting agencies, with several home visiting agencies having very few connections in the community but one home visiting program endorsing collaborative relationships with upwards of 38 partner agencies in the network. In serving families at risk for IPV, home visiting agencies were most likely to have referral relationships with mental health provider agencies and substance use disorder service agencies. A community detection analysis identified distinct communities within the network and demonstrated that certain agency types were more connected to one another while others were typically siloed within the network. Notably, the IPV and home visiting communities infrequently overlapped. Sensitivity analyses showed that survey participants' knowledge of their agencies' external collaborations varied by their work roles and agencies overall had low levels of consensus about their connectedness to one another. We identified a heterogeneous service system available to families of young children at-risk for or experiencing IPV. Overall inter-agency connectedness was low, with many siloed agencies and a lack of shared knowledge of community resources. Understanding current collaborations, silos, and centrality of agencies is an effective public health tool for allocating scarce resources across diverse service sectors to efficiently improve the system serving families experiencing IPV.

Receipt and duration of buprenorphine treatment during pregnancy and postpartum periods in a national privately-insured cohort.

Background: Research gaps exist on the use of medications for opioid use disorder (OUD) among birthing people. Methods: This retrospective cohort study included people who underwent childbirth deliveries during 2017-2020 and had a diagnosis of OUD identified from a national private insurance claims database. Buprenorphine prescriptions received during the year before childbirth and the year after childbirth were obtained from pharmacy claims. Logistic regressions were used to estimate associations between receipt of buprenorphine and individual and state-level factors. Results: Among a sample of 1,523 birthing people diagnosed with OUD, 540 (35.5 %) received buprenorphine during the pregnancy or postpartum periods. About half (51.5 %) of new recipients of buprenorphine received treatment for at least six months and, of those, one-third experienced a treatment interruption. The buprenorphine receipt rate differed significantly by race and ethnicity: 28.8 % of non-Hispanic Black birthing people with OUD and 22.8 % of Hispanic birthing people with OUD received buprenorphine treatment in contrast to 37.7 % of non-Hispanic white birthing people (aOR 0.53 [95 % CI 0.35-0.81] and 0.59 [95 % CI 0.37-0.96], respectively). The buprenorphine use rate increased over time from 29.7 % in 2017 to 42.9 % in 2020. Birthing people living in states with punitive policies related to substance use in pregnancy had the lowest buprenorphine use rate of 22.7 % as compared to 43.0 % in states with least restrictive policies. Conclusion: In this national sample of privately-insured individuals, by 2020, 42.9 % of birthing people with OUD received buprenorphine treatment. Treatment discontinuation and interruptions were common in the period surrounding childbirth.

Provider and Caregiver Perspectives on Telehealth Assessments for Autism Spectrum Disorder in Young Children: A Multimethod DBPNet Study Exploring Equity.

BACKGROUND: Telehealth uptake increased dramatically during the COVID-19 pandemic, including for autism spectrum disorder (ASD) assessment by developmental-behavioral pediatric (DBP) clinicians. However, little is known about the acceptability of telehealth or its impact on equity in DBP care. OBJECTIVE: Engage providers and caregivers to glean their perspectives on the use of telehealth for ASD assessment in young children, exploring acceptability, benefits, concerns, and its potential role in ameliorating or exacerbating disparities in access to and quality of DBP care. METHODS: This multimethod study used surveys and semistructured interviews to describe provider and family perspectives around the use of telehealth in DBP evaluation of children younger than 5 years with possible ASD between 3/2020 and 12/2021. Surveys were completed by 13 DBP clinicians and 22 caregivers. Semistructured interviews with 12 DBP clinicians and 14 caregivers were conducted, transcribed, coded, and analyzed thematically. RESULTS: Acceptance of and satisfaction with telehealth for ASD assessments in DBP were high for clinicians and most caregivers. Pros and cons concerning assessment quality and access to care were noted. Providers raised concerns about equity of telehealth access, particularly for families with a preferred language other than English. CONCLUSION: This study's results can inform the adoption of telehealth in DBP in an equitable manner beyond the pandemic. DBP providers and families desire the ability to choose telehealth care for different assessment components. Unique factors related to performing observational assessments of young children with developmental and behavioral concerns make telehealth particularly well-suited for DBP care.

Employment and leave while parenting children with medical complexity.

INTRODUCTION: Children with medical complexity (CMC) require frequent medical care and are at risk of recurrent hospitalizations. The Family Medical Leave Act (FMLA) allows some workers to take unpaid leave from work to care for family members. This study examines caregiving obligations of parents of CMC, the availability and appropriateness of FMLA in facilitating their roles as caregivers and employees, and how these challenges affect employment and financial security. METHOD: Parents of CMC were recruited from a primary care pediatric care management program for semistructured interviews. An integrated approach, using both deductive and inductive codes, was used to conduct a thematic analysis. RESULTS: All 16 respondents were female, with half working full-time, five working part-time, and three not employed at the time of participation. On average, their CMC experienced 1.8 hospitalizations in the prior 12 months. Parents described that caring for CMC required ongoing and unpredictable time commitments that conflicted with job duties and schedules. This conflict led to frequent employment changes that negatively impacted parents' eligibility for FMLA, their financial health, and their own well-being. Parents often described not having access to FMLA due to exhausting the allotted time, part-time status, insufficient tenure at their job, or the inability to take unpaid leave. Parents depended on informal workplace policies and relationships with supervisors to maintain employment, as well as personal and formal supports to care for CMC and their families' financial stability. DISCUSSION: Parents want and need to work in order to support their families and pay for the added expenses related to care for their CMC. Remaining active in the workforce requires that they have flexible schedules that accommodate their unpredictable and ongoing caregiving responsibilities. The eligibility criteria and unpaid nature of FMLA, however, make employment and financial stability elusive for caregivers of CMC. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

A Qualitative Study of Perspectives of Black Women on Autonomy and Motivational Interviewing.

Purpose: Motivational interviewing (MI) is an evidence-based strategy to modify health behaviors, including some risk factors for adverse birth outcomes. Black women, who have disproportionately high rates of adverse birth outcomes, have reported mixed preferences on MI. This study explored the acceptability of MI among Black women who are at high risk for adverse birth outcomes. Methods: We conducted qualitative interviews with women with a history of preterm birth. Participants were English-language proficient and had Medicaid-insured infants. We purposively oversampled women whose infants had medical complexity. Interviews explored experiences with health care and health behaviors after birth. The interview guide was iteratively developed to obtain specific reactions to MI by including videos demonstrating MI-consistent and MI-inconsistent counseling. Interviews were audio recorded, transcribed, and coded following an integrated approach in which we applied a priori codes related to MI and allowed themes to emerge from the data. Results: We interviewed 30 non-Hispanic Black women from October 2018 to July 2021. Eleven viewed the videos. Participants emphasized the importance of autonomy in decision-making and health behavior. Participants expressed a preference for MI-consistent clinical approaches, including autonomy support and building rapport, considering them respectful, nonjudgmental, and likely to support change. Conclusions: In this sample of Black women with a history of preterm birth, participants valued an MI-consistent clinical approach. Incorporating MI into clinical care may improve the experience of health care among Black women, thus serving as one strategy to promote equity in birth outcomes.

Modifying an Open Science Online Grocery for parents of youth with anorexia nervosa: A proof-of-concept study.

OBJECTIVE: For youth with anorexia nervosa (AN), remission requires high caloric goals to achieve weight restoration, consumption of a wide variety of calorically dense foods, and reintroduction of eliminated foods. Family-based treatment (FBT), the gold-standard treatment for youth with AN, empowers parents to renourish their child and restore them to health; yet, parents often report struggling with shifting meal planning and grocery shopping behaviors to focus on nutritional rehabilitation and weight restoration. METHODS: This proof-of-concept study aimed to modify a simulated grocery store (Open Science Online Grocery [OSOG]) for parents of youth with AN and explore the acceptability and feasibility of its use as part of standard care. Study staff collaborated with six parent research partners to modify the OSOG prior to piloting it with participants. Participants were 10 parents of youth undergoing a first-time hospitalization for medical stabilization of AN or atypical AN. Parents completed a battery of measures and a semistructured interview assessing the acceptability and feasibility of OSOG. RESULTS: Parents described the tool as credible and acceptable. Qualitative feedback highlighted common themes of caregiver burden, nutrition education, and acceptability of the tool. DISCUSSION: Results point to the need for more work in supporting parents in Phase I of FBT. PUBLIC SIGNIFICANCE: Families are instrumental in supporting youth to recover from anorexia nervosa. During treatment, parents are charged with selecting and serving their adolescent's meals, often requiring them to change grocery shopping and food preparation habits to meet their child's high caloric needs. Parents reported feeling overwhelmed by this task and noted struggling with learning different approaches to nourish their adolescent during an already stressful time. Collaboratively with parents, we modified a tool to support parents in shifting thier shopping habits, which they reported as being a helpful springboard in the early phase of treatment.

Mixed-methods process evaluation of a respiratory-culture diagnostic stewardship intervention.

OBJECTIVE: To conduct a process evaluation of a respiratory culture diagnostic stewardship intervention. DESIGN: Mixed-methods study. SETTING: Tertiary-care pediatric intensive care unit (PICU). PARTICIPANTS: Critical care, infectious diseases, and pulmonary attending physicians and fellows; PICU nurse practitioners and hospitalist physicians; pediatric residents; and PICU nurses and respiratory therapists. METHODS: This mixed-methods study was conducted concurrently with a diagnostic stewardship intervention to reduce the inappropriate collection of respiratory cultures in mechanically ventilated children. We quantified baseline respiratory culture utilization and indications for ordering using quantitative methods. Semistructured interviews informed by these data and the Consolidated Framework for Implementation Research (CFIR) were then performed, recorded, transcribed, and coded to identify salient themes. Finally, themes identified in these interviews were used to create a cross-sectional survey. RESULTS: The number of cultures collected per day of service varied between attending physicians (range, 2.2-27 cultures per 100 days). In total, 14 interviews were performed, and 87 clinicians completed the survey (response rate, 47%) and 77 nurses or respiratory therapists completed the survey (response rate, 17%). Clinicians varied in their stated practices regarding culture ordering, and these differences both clustered by specialty and were associated with perceived utility of the respiratory culture. Furthermore, group "default" practices, fear, and hierarchy were drivers of culture orders. Barriers to standardization included fear of a missed diagnosis and tension between practice standardization and individual decision making. CONCLUSIONS: We identified significant variation in utilization and perceptions of respiratory cultures as well as several key barriers to implementation of this diagnostic test stewardship intervention.

Innovations in Evidence-Based Home Visiting Intended to Engage and Support Families Impacted by Opioid Use Disorder: Three Case Studies from Pennsylvania Pilot Programs.

BACKGROUND: Pregnancy and early parenthood can be challenging transitional times for many families, especially those struggling with opioid use disorder (OUD). Over 8 million children live with a parent with SUD and parental drug use has been attributed to rising rates of family instability and child welfare involvement (Lipari & Van Horn, 2017; AFCARS, 2020;). Community-based prevention programming for families with young children, such as evidence-based maternal and child home visiting (EBHV), may we well positioned to engage and support families impacted by the opioid epidemic through early childhood. This paper presents case studies to highlight promising practices for adapting EBHV models to families impacted by SUD from the perspectives of staff and administrators. METHODS: Data from three pilot sites are presented as case studies. These sites were selected to represent the most innovative and developed adaptations to EBHV for families impacted by substance use from an implementation evaluation of state-funded pilot sites (N = 20) at existing home visiting agencies across Pennsylvania. Data reported here represent semi-structured interviews with 11 individuals. Data were coded to facilitators and barriers nodes to understand the process and impact of pilot implementation. RESULTS: Systems-level collaboration and coordination were key to serving a population already engaged in multiple systems. Engagement of substance use experts allowed home visitors to focus on delivery of evidence-based curricula supporting family stability and child development. External partnerships reduced stigma among home visitors. Across sites, staff struggled with the increased acuity of social complexity of the OUD population. CONCLUSIONS FOR PRACTICE: Pregnancy and early parenthood are challenging transitional times for many families, especially those with OUD. Evaluation results demonstrate the promise of systems-based adaptations to community-based prevention programming for families with young children, such as maternal and child home visiting, to better support families impacted by SUD.

Eligibility, Utilization, and Effectiveness of 17-Alpha Hydroxyprogesterone Caproate in a Statewide Population-Based Cohort of Medicaid Enrollees.

OBJECTIVE: The primary objective was to estimate the initiation and adherence rates of 17 α-hydroxyprogesterone caproate (17OHPC) among eligible mothers in a statewide population-based cohort of Medicaid enrollees. The secondary objectives were to (1) determine the association of maternal sociodemographic and clinical characteristics with 17OHPC utilization and (2) assess the real-world effectiveness of 17OHPC on recurrent preterm birth prevention and admission to neonatal intensive care unit (NICU). STUDY DESIGN: This is a retrospective cohort study using a linked, longitudinal administrative dataset of birth certificates and medical assistance claims. Medicaid-enrolled mothers in Pennsylvania were included in this study if they had at least one singleton live birth from 2014 to 2016 following at least one spontaneous preterm birth. Maternal Medicaid claims were used to ascertain the use of 17OHPC from various manufacturers, including compounded formulations. Propensity score matching was used to create a covariate balance between 17OHPC treatment and comparison groups. RESULTS: We identified 4,781 Medicaid-covered 17OHPC-eligible pregnancies from 2014 to 2016 in Pennsylvania, 3.4% of all Medicaid-covered singleton live births. The population-based initiation rate was 28.5% among eligible pregnancies. Among initiators, 50% received ≥16 doses as recommended, while 10% received a single dose only. The severity of previous spontaneous preterm birth was the strongest predictor for the initiation and adherence of 17OHPC. In the matched treatment (n = 1,210) and comparison groups (n = 1,210), we found no evidence of 17OHPC effectiveness. The risks of recurrent preterm birth (relative risk [RR] 1.10, 95% confidence interval [CI] 0.97-1.24) and births admitted to NICU (RR 1.00, 95% CI 0.84-1.18) were similar in treated and comparison mothers. CONCLUSION: The 17OHPC-eligible population represented 3.4% of singleton live births. Less than one-third of eligible mothers initiated treatment. Among initiators, 50% were treatment adherent. We found no difference in the risk of recurrent preterm birth or admission to NICU between treatment and comparison groups. KEY POINTS: · About 3.4% of singleton live births were eligible for 17OHPC.. · About 30% of eligible mothers initiated treatment.. · We found no association of 17OHPC with recurrent preterm birth..

A Qualitative Study of Resident Experiences With Clinical Event Debriefing.

OBJECTIVES: The facilitated discussion of events through clinical event debriefing (CED) can promote learning and wellbeing, but resident involvement is often limited. Although the graduate medical education field supports CED, interventions to promote resident involvement are limited by poor insight into how residents experience CED. The objective of this study was to characterize pediatric resident experiences with CED, with a specific focus on practice barriers and facilitators. METHODS: We conducted this qualitative study between November and December 2020 at a large, free-standing children's hospital. We recruited pediatric residents from postgraduate years 1 to 4 to participate in virtual focus groups. Focus groups were digitally recorded, deidentified, and transcribed. Transcripts were entered into coding software for analysis. We analyzed the data using a modified grounded theory approach to identify major themes. RESULTS: We conducted 4 mixed-level focus groups with 26 residents. Our analysis identified multiple barriers and facilitators of resident involvement in CED. Several barriers were logistical in nature, but the most salient barriers were derived from unique features of the resident role. For example, residents described the transience of their role as a barrier to both participating and engaging in CED. However, they described advancing professional experience and the desire for reflective learning as facilitators. CONCLUSIONS: Residents in this study highlighted many factors affecting their participation and engagement in CED, including barriers related to the unique features of their role. On the basis of resident experiences, we propose several recommendations for CED practice that graduate medical education programs and hospitals should consider for supporting resident involvement in CED.

From the Frontlines: A Qualitative Study of Staff Experiences With Clinical Event Debriefing.

OBJECTIVES: Clinical event debriefing (CED) can improve patient care and outcomes, but little is known about CED across inpatient settings, and participant experiences have not been well described. In this qualitative study, we sought to characterize and compare staff experiences with CED in 2 hospital units, with a goal of generating recommendations for a hospital-wide debriefing program. METHODS: We conducted 32 semistructured interviews with clinical staff who attended a CED in the previous week. We explored experiences with CED, with a focus on barriers and facilitators. We used content analysis with constant comparative coding to understand priorities identified by participants. We used inductive reasoning to develop a set of CED practice recommendations to match participant priorities. RESULTS: Three primary themes emerged related to CED barriers and facilitators. (1) Factors affecting attendance: most respondents voiced a need for frontline staff inclusion in CED, but they also cited competing clinical duties and scheduling conflicts as barriers. (2) Factors affecting participant engagement: respondents described factors that influence participant engagement in reflective discussion. They described that the CED leader must cultivate a psychologically safe environment in which participants feel empowered to speak up, free from judgment. (3) Factors affecting learning and systems improvement: respondents emphasized that the CED group should generate a plan for improvement with accountable stakeholders. Collectively, these priorities propose several recommendations for CED practice, including frontline staff inclusion. CONCLUSIONS: In this study, we propose recommendations for CED that are derived from first-hand participant experiences. Future study will explore implementation of CED practice recommendations.

Patient and Provider Perspectives on Acceptability, Access, and Adherence to 17-Alpha-Hydroxyprogesterone Caproate for Preterm Birth Prevention.

Background: Preterm birth (PTB) is a pressing maternal and child health issue with long-standing racial inequities in outcomes and care provision. 17-Alpha-hydroxyprogesterone caproate (17OHPC) has been one of few clinical interventions for recurrent PTB prevention. Little is known about the factors influencing successful administration and receipt of 17OHPC among mothers in the Medicaid program. Materials and Methods: We conducted individual semistructured interviews with 17OHPC-eligible pregnant women and obstetric providers from two academic medical centers in Philadelphia, PA. Patient participants were publicly insured, eligible for 17OHPC treatment, and purposively sampled as either (1) actively receiving treatment or (2) declining/discontinuing treatment. Providers had experience providing care to Medicaid-enrolled patients. Interview transcripts were coded and analyzed to identify themes related to treatment acceptability, access, and adherence. Results: Of the 17 patient participants, the mean age was 30 years. Ten providers (MDs, nurse practitioners, and registered nurses) were also interviewed. Factors facilitating 17OHPC uptake and adherence among patients included severity of prior PTB, provider counseling, and coordination among the clinic, pharmacy, and insurance. Pain was cited as the most significant barrier to 17OHPC for patients, while providers perceived social adversity and beliefs about patients' commitment to treatment to be primary patient barriers. For providers, clinical experience and practice guidelines contributed to their use of 17OHPC. Administrative complexity and coordination of services were the primary provider barrier to 17OHPC administration. Conclusions: Patient-provider communication is a primary driver of 17OHPC acceptability and adherence. Comprehensive patient-centered consultation may improve uptake of clinical therapies among pregnant women at high risk for PTB.

A Community Capitals Framework for Identifying Rural Adaptation in Maternal-Child Home Visiting.

OBJECTIVE: To understand how maternal and child home-visiting programs are adapted, enhanced, and expanded to meet the unique needs of rural communities. DESIGN: We explored factors shaping the role of home visiting with data from a 2013-2015 statewide evaluation of Maternal, Infant, and Early Childhood Home Visiting-funded programs. Features unique to a rural experiences were mapped onto the Community Capitals Framework. SETTING: Individual, semistructured interviews were conducted at 11 of 38 home-visiting sites across Pennsylvania. PARTICIPANTS: Program administrators, home visitors, and clients. MAIN OUTCOME MEASURE: Program adaptation. RESULTS: Our analysis represents 150 interviews with 11 program sites serving 14 counties. We document how rural home-visiting programs address community-wide limitations to maternal and child health by adapting program content to better meet the needs of families in rural areas. Data demonstrate how rural home-visiting program's provision of economic and social services reach beyond maternal child health care, building the capacity of individual families and the broader community. CONCLUSIONS: Home-visiting programs should be viewed as a vehicle for improving community well-being beyond health outcomes. These programs have become an integral part of our public health framework and should be leveraged as such.

Integrating the Built and Social Environment into Health Assessments for Maternal and Child Health: Creating a Planning-Friendly Index.

Environmental and community context earliest in the life course have a profound effect on life-long health outcomes. Yet, standard needs assessments for maternal and child health (MCH) programs often overlook the full range of influences affecting health in-utero and early childhood. To address this, we developed a methodology for assessing community risk in MCH based on six domains integrating 66 indicators across community, environment, socioeconomic indicators, and MCH outcomes. We pilot this methodology in Pennsylvania, and share examples of how local governments, planners, and public health officials across the geographic spectrum can integrate this data into community planning for improved maternal and child health.

Updating OMERACT Core Set of Domains for ANCA-associated Vasculitis: Patient Perspective Using the International Classification of Function, Disability, and Health.

OBJECTIVE: Aspects of antineutrophil cytoplasmic antibodies-associated vasculitis (AAV) prioritized by patients with AAV were described using the International Classification of Function, Disability, and Health (ICF). METHODS: Items identified during 14 individual interviews were incorporated into an ICF-based questionnaire administered to participants of 2 vasculitis patient symposia: 36 in the United Kingdom and 63 in the United States. RESULTS: Categories identified as at least "moderately relevant" by ≥ 5% of subjects included 44 body functions, 14 body structures, 35 activities and participation, 31 environmental factors, and 38 personal factors. CONCLUSION: Identified categories differ from those identified by the current Outcome Measures in Rheumatology (OMERACT) core set and those prioritized by vasculitis experts.

Exploring how patients understand and assess their diabetes control.

BACKGROUND: Poor understanding of diabetes management targets is associated with worse disease outcomes. Patients may use different information than providers to assess their diabetes control. In this study, we identify the information patients use to gauge their current level of diabetes control and explore patient-perceived barriers to understanding the hemoglobin A1c value (HbA1c). METHODS: Adults who self-reported a diagnosis of diabetes were recruited from outpatient, academically-affiliated, Internal Medicine clinics. Semi-structured interviews were conducted with participants and collected data were analyzed using thematic analysis. RESULTS: The mean age of the 25 participants was 56.8 years. HbA1c was one of several types of information participants used to assess diabetes control. Other information included perceived self-efficacy and adherence to self-care, the type and amount of medications taken, the presence or absence of symptoms attributed to diabetes, and feedback from self-monitoring of blood glucose. Most participants reported familiarity with the HbA1c (22 of 25), though understanding of the value's meaning varied significantly. Inadequate diabetes education and challenges with patient-provider communication were cited as common barriers to understanding the HbA1c. CONCLUSIONS: In addition to the HbA1c, several categories of information influenced participants' assessments of their diabetes control. Increased provider awareness of the factors that influence patients' perceptions of diabetes control can inform effective, patient-centered approaches for communicating vital diabetes-related information, facilitating behavior change towards improved patient outcomes.

Validation of the ANCA-associated vasculitis patient-reported outcomes (AAV-PRO) questionnaire.

OBJECTIVES: To finalise and validate a disease-specific patient-reported outcome (PRO) measure: the ANCA-associated vasculitis patient-reported outcome (AAV-PRO) questionnaire. Using a 35-item candidate questionnaire developed following 50 qualitative interviews in the UK, USA and Canada, a longitudinal survey was conducted to determine the final scale structure and validate the AAV-PRO. METHODS: Participants were recruited via Vasculitis UK and the Vasculitis Patient-Powered Research Network. The 35-item candidate questionnaire was completed at baseline and 3 months; UK participants completed the EuroQol-5D-5L (EQ-5D-5L), while US participants completed a test-retest exercise, 3-5 days after baseline. Scale structure was defined using exploratory factor analysis (EFA) and Rasch analysis. Convergent and known groups validity, test-retest reliability and longitudinal construct validity were assessed. RESULTS: There were 626 participants with AAV; >25% reporting 'active disease'. EFA and Rasch analysis supported a 29-item profile measure comprising six domains: 'organ-specific symptoms', 'systemic symptoms', 'treatment side effects', 'social and emotional impact', 'concerns about the future' and 'physical function'. Mean domain scores were higher for participants with 'active disease' versus 'remission' (p<0.001). Construct validity was demonstrated by correlations between domain scores and the EQ-5D-5L (range r=-0.55 to 0.78), all p<0.0001. In participants reporting 'no change' (n=97) during the test-retest, intraclass correlation coefficient values were high (range 0.89-0.96) for each domain. CONCLUSIONS: The AAV-PRO, a new disease-specific PRO measure for AAV, has good face and construct validity, is reliable, feasible and discriminates among disease states.

A Qualitative Exploration of Co-location as an Intervention to Strengthen Home Visiting Implementation in Addressing Maternal Child Health.

Objectives The aim of this paper is to explore the process and impact of co-locating evidence-based maternal and child service models to inform future implementation efforts. Methods As part of a state-wide evaluation of maternal and child home visiting programs, we conducted semi-structured interviews with administrators and home visitors from home visiting agencies across Pennsylvania. We collected 33 interviews from 4 co-located agencies. We used the Consolidated Framework for Implementation Research (CFIR) to describe the key elements mitigating implementation of multiple home visiting models. Results A primary advantage of co-location described by participants was the ability to increase the agency's base of eligible clients through the implementation of a model with different program eligibility (e.g. income, child age) than the existing agency offering. Model differences related to curriculum (e.g. content or intensity/meeting frequency) enabled programs to more selectively match clients to models. To recruit eligible clients, new models were able to build upon the existing service networks of the initial program. Co-location provided organizational opportunities for shared trainings, enabling administrative efficiencies and collaborative staff learning. Programs implemented strategies to build synergies with complementary model features, for instance using the additional program option to serve waitlisted clients and to transition services after one model is completed. Conclusions for Practice Considerable benefits are experienced when home visiting models co-locate. This research builds on literature encouraging collaboration among community agencies and provides insight on a specific facilitative approach. This implementation strategy informs policy across the social services spectrum and competitive funding contexts.

Health-related quality of life in ANCA-associated vasculitis and item generation for a disease-specific patient-reported outcome measure.

OBJECTIVE: The antineutrophil cytoplasmic antibody (ANCA)-associated vasculitides (AAVs) are multisystem diseases of the small blood vessels. Patients experience irreversible damage and psychological effects from AAV and its treatment. An international collaboration was created to investigate the impact of AAV on health-related quality of life (HRQoL), and develop a disease-specific patient-reported outcome measure to assess outcomes of importance to patients. METHODS: Patients with AAV from the UK, USA, and Canada were interviewed to identify salient aspects of HRQoL affected by AAV. The study was overseen by a steering committee including four patient research partners. Purposive sampling of interviewees ensured representation of a range of disease manifestations and demographics. Inductive analysis was used to identify themes of importance to patients; these were further confirmed by a free-listing exercise in the US. Individual themes were recast into candidate items, which were scrutinized by patients, piloted through cognitive interviews and received a linguistic and translatability evaluation. RESULTS: Fifty interviews, conducted to saturation, with patients from the UK, USA, and Canada, identified 55 individual themes of interest within seven broad domains: general health perceptions, impact on function, psychological perceptions, social perceptions, social contact, social role, and symptoms. Individual themes were constructed into >100 candidate questionnaire items, which were then reduced and refined to 35 candidate items. CONCLUSION: This is the largest international qualitative analysis of HRQoL in AAV to date, and the results have underpinned the development of 35 candidate items for a disease-specific, patient-reported outcome questionnaire.