Decision making in metoidioplasty and phalloplasty gender-affirming surgery: a mixed methods study.

BACKGROUND: Gender-affirming surgical procedures, such as metoidioplasty and phalloplasty for those assigned female at birth, are complex and multistaged and involve risks. Individuals considering these procedures experience greater uncertainty or decisional conflict, compounded by difficulty finding trustworthy information. AIM: (1) To explore the factors contributing to decisional uncertainty and the needs of individuals considering metoidioplasty and phalloplasty gender-affirming surgery (MaPGAS) and (2) to inform development of a patient-centered decision aid. METHODS: This cross-sectional study was based on mixed methods. Adult transgender men and nonbinary individuals assigned female at birth at various stages of MaPGAS decision making were recruited from 2 study sites in the United States to participate in semistructured interviews and an online gender health survey, which included measures of gender congruence, decisional conflict, urinary health, and quality of life. Trained qualitative researchers conducted all interviews with questions to explore constructs from the Ottawa decision support framework. OUTCOMES: Outcomes included goals and priorities for MaPGAS, expectations, knowledge, and decisional needs, as well as variations in decisional conflict by surgical preference, surgical status, and sociodemographic variables. RESULTS: We interviewed 26 participants and collected survey data from 39 (24 interviewees, 92%) at various stages of MaPGAS decision making. In surveys and interviews, affirmation of gender identity, standing to urinate, sensation, and the ability to "pass" as male emerged as highly important factors for deciding to undergo MaPGAS. A third of survey respondents reported decisional conflict. Triangulation of data from all sources revealed that conflict emerged most when trying to balance the strong desire to resolve gender dysphoria through surgical transition against the risks and unknowns in urinary and sexual function, appearance, and preservation of sensation post-MaPGAS. Insurance coverage, age, access to surgeons, and health concerns further influenced surgery preferences and timing. CLINICAL IMPLICATIONS: The findings add to the understanding of decisional needs and priorities of those considering MaPGAS while revealing new complexities among knowledge, personal factors, and decisional uncertainty. STRENGTHS AND LIMITATIONS: This mixed methods study was codeveloped by members of the transgender and nonbinary community and yielded important guidance for providers and individuals considering MaPGAS. The results provide rich qualitative insights for MaPGAS decision making in US contexts. Limitations include low diversity and sample size; both are being addressed in work underway. CONCLUSIONS: This study increases understanding of the factors important to MaPGAS decision making, and results are being used to guide development of a patient-centered surgical decision aid and informed survey revision for national distribution.

Structure and integration of specialty palliative care in three NCI-designated cancer centers: a mixed methods case study.

INTRODUCTION: Early access to specialty palliative care is associated with better quality of life, less intensive end-of-life treatment and improved outcomes for patients with advanced cancer. However, significant variation exists in implementation and integration of palliative care. This study compares the organizational, sociocultural, and clinical factors that support or hinder palliative care integration across three U.S. cancer centers using an in-depth mixed methods case study design and proposes a middle range theory to further characterize specialty palliative care integration. METHODS: Mixed methods data collection included document review, semi-structured interviews, direct clinical observation, and context data related to site characteristics and patient demographics. A mixed inductive and deductive approach and triangulation was used to analyze and compare sites' palliative care delivery models, organizational structures, social norms, and clinician beliefs and practices. RESULTS: Sites included an urban center in the Midwest and two in the Southeast. Data included 62 clinician and 27 leader interviews, observations of 410 inpatient and outpatient encounters and seven non-encounter-based meetings, and multiple documents. Two sites had high levels of "favorable" organizational influences for specialty palliative care integration, including screening, policies, and other structures facilitating integration of specialty palliative care into advanced cancer care. The third site lacked formal organizational policies and structures for specialty palliative care, had a small specialty palliative care team, espoused an organizational identity linked to treatment innovation, and demonstrated strong social norms for oncologist primacy in decision making. This combination led to low levels of specialty palliative care integration and greater reliance on individual clinicians to initiate palliative care. CONCLUSION: Integration of specialty palliative care services in advanced cancer care was associated with a complex interaction of organization-level factors, social norms, and individual clinician orientation. The resulting middle range theory suggests that formal structures and policies for specialty palliative care combined with supportive social norms are associated with greater palliative care integration in advanced cancer care, and less influence of individual clinician preferences or tendencies to continue treatment. These results suggest multi-faceted efforts at different levels, including social norms, may be needed to improve specialty palliative care integration for advanced cancer patients.

Psychometric characteristics of the health care empowerment questionnaire in a sample of patients with arthritis and rheumatic conditions.

BACKGROUND: Patient empowerment can improve health-related outcomes and is important in chronic conditions, such as arthritis. This study aimed to validate the Health Care Empowerment Questionnaire (HCEQ), a patient-reported experience measure of empowerment, for use with patients with arthritis and other rheumatic diseases. METHODS: The HCEQ measures Patient Information Seeking (or Involvement in Decisions) and Healthcare Interaction Results (or Involvement in Interactions) and asks respondents to answer questions in two ways: whether they feel something happened and its importance to them. Face validity was assessed through qualitative data (n = 8, nominal group technique; n = 55, focus groups). Measure structure was assessed through confirmatory factor analysis (CFA); internal consistency was also assessed (n = 9226). Test-retest reliability was assessed with sub-sample of participants (n = 182). RESULTS: We found adequate face validity of the HCEQ for patients with arthritis. The CFA indicated good fit to the data for the two-factor structure of the HCEQ (RMSEA = 0.075; CFI = 0.987; TLI = 0.978; SRMR = 0.026). Internal consistency was strong (α=0.94 for both subscales). Test-retest reliability was moderate for Patient Information Seeking (ICC=0.67) and good for Healthcare Interaction Results (ICC=0.77). CONCLUSIONS: The HCEQ, with modifications, demonstrated promising psychometric properties within this sample, laying the foundation for further assessment. This work supports the HCEQ as an appropriate instrument for examining experiences with and perceived importance of empowerment in individuals with arthritis and other rheumatic conditions. PATIENT CONTRIBUTION: Patients contributed to the assessment of face validity. As a measure of patient empowerment, the HCEQ's use can enable further participation of patients in health care.

Toward Improved Identification of Parental Substance Misuse: An Examination of Current Practices and Gaps in One US State.

INTRODUCTION: The use of illicit substances, including opioids, is a serious public health issue in the United States. While there are reports of the impact of the ongoing opioid crisis on adults, a new focus has emerged on how parental substance misuse (PSM) affects children. This study explored existing screening and assessment practices and services for children and families affected by PSM across different service sectors in one state. The purpose of the study was to identify opportunities for training, policy development, and practice improvement related to identifying PSM and linking children and parents to services. METHODS: Interviews (n = 15) with professionals from five service sectors (mental health, primary care, schools, community programs, and law enforcement) were used to inform development of a state-wide survey of the same groups (n = 498) to assess current practices, attitudes, knowledge, and training needs related to child screening of PSM. The survey was piloted using cognitive interviewing (n = 9) before it was distributed. RESULTS: Fewer than 20% of survey respondents reported using standardized tools specific to screening PSM. Informal assessment practices predominate, though 60% of respondents saw value in adopting more standardized PSM screening. Attitudes about PSM and screening varied among sectors but interest in training was high. DISCUSSION: Results indicate a need for more systematic PSM screening, cross-sector training and practice discussions, and policies to support early identification of children affected by PSM. Ramifications of these findings and recommendations are discussed.

Translation of an Action Learning Collaborative Model Into a Community-Based Intervention to Promote Physical Activity and Healthy Eating.

UNLABELLED: Action Learning Collaboratives (ALCs), whereby teams apply quality improvement (QI) tools and methods, have successfully improved patient care delivery and outcomes. We adapted and tested the ALC model as a community-based obesity prevention intervention focused on physical activity and healthy eating. METHOD: The intervention used QI tools (e.g., progress monitoring) and team-based activities and was implemented in three communities through nine monthly meetings. To assess process and outcomes, we used a longitudinal repeated-measures and mixed-methods triangulation approach with a quasi-experimental design including objective measures at three time points. RESULTS: Most of the 97 participants were female (85.4%), White (93.8%), and non-Hispanic/Latino (95.9%). Average age was 52 years; 28.0% had annual household income of $20,000 or less; and mean body mass index was 35. Through mixed-effects models, we found some physical activity outcomes improved. Other outcomes did not significantly change. Although participants favorably viewed the QI tools, components of the QI process such as sharing goals and data on progress in teams and during meetings were limited. Participants' requests for more education or activities around physical activity and healthy eating, rather than progress monitoring and data sharing required for QI activities, challenged ALC model implementation. CONCLUSIONS: An ALC model for community-based obesity prevention may be more effective when applied to preexisting teams in community-based organizations.

Exploring Decisional Conflict Experienced by Individuals Considering Metoidioplasty and Phalloplasty Gender-affirming Surgery.

Background: Metoidioplasty and phalloplasty gender-affirming surgery (MaPGAS) is increasingly performed and requires patients to make complex decisions that may lead to decisional uncertainty. This study aimed to evaluate decisional conflict in individuals considering MaPGAS. Methods: We administered a cross-sectional survey to adult participants assigned female sex at birth and considering MaPGAS, recruited via social media platforms and community health centers. We collected data on demographics, medical and surgical history, MaPGAS type considered, and the Decisional Conflict Scale (DCS). DCS scores range from 0 to 100 (>37.5 indicates greater decisional conflict). Demographic characteristics and DCS scores were compared between subgroups, using descriptive and chi-square statistics. Participants commented on MaPGAS uncertainty, and their comments were evaluated and thematically analyzed. Results: Responses from 264 participants were analyzed: mean age 29 years; 64% (n = 168) trans men, 80% (n = 210) White, 78% (n = 206) nonrural, 45% (n = 120) privately insured, 56% (n = 148) had 4 or more years of college, 23% (n = 84) considering metoidioplasty, 24% (n = 87) considering phalloplasty, and 26% (n = 93) considering metoidioplasty and phalloplasty. DCS total scores were significantly higher (39.8; P < 0.001) among those considering both MaPGAS options, as were mean ratings on the Uncertainty subscale [64.1 (SD 25.5; P < 0.001)]. Concerns surrounding complications were the top factor contributing to uncertainty and decisional conflict. Conclusions: In a cross-sectional national sample of individuals seeking MaPGAS, decisional uncertainty was the highest for those considering both MaPGAS options compared with metoidioplasty or phalloplasty alone. This suggests this cohort would benefit from focused decision support.

Organizational Intent, Organizational Structures, and Reviewer Mental Models Influence Mortality Review Processes.

Objective: To identify the factors that influence the mortality review process at health systems, including how mortality review is conducted, cases are adjudicated, and results are used. Methods: We conducted a qualitative analysis of the mortality review processes of 6 US health systems from February 1, 2021 to June 31, 2021. The data sources included individual and small-group semi-structured interviews with mortality review team members and a content analysis of site artifacts (eg, guiding principles, chart abstraction forms, review workflows, and clinical pathways developed from past mortality reviews). We analyzed each site's mortality review process, goals and incentives for mortality review, historical and evolving aspects of mortality review, personnel involved, and post-review use of findings. Results: Across the 6 systems, we interviewed a total of 24 mortality review experts and analyzed 26 site documents. We identified 3 thematic factors that influence mortality review processes: organizational intent, organizational structures for mortality review, and the mental models of individuals involved in the review process. Two subthemes emerged within organizational intent: (1) identifying preventable deaths to lower (clinical or financial) risk and (2) using death cases to guide system improvement. Sites varied in governance and decision rights concerning mortality review and adjudication, with 2 subthemes within organizational structures: (1) centralized-hierarchical and (2) decentralized or multidisciplinary. The analysis of mental models of participating reviewers revealed 2 themes: (1) confirmation of preventability and (2) identification of patterns or "signals." Conclusion: Understanding the factors that influence mortality review allows health systems to better leverage mortality review for institutional improvement and to develop training that builds shared mental models to enhance the review process.

Patient Empowerment Among Adults With Arthritis: The Case for Emotional Support.

OBJECTIVE: This study aimed to identify differences in patient empowerment based on biopsychosocial patient-reported measures, the magnitude of those differences, and which measures best explain differences in patient empowerment. METHODS: This was a cross-sectional observational study of 6918 adults with arthritis in the US. Data were collected from March 2019 to March 2020 through the Arthritis Foundation Live Yes! INSIGHTS program. Patient empowerment, measured by the Health Care Empowerment Questionnaire, included 2 scales: Patient Information Seeking and Healthcare Interaction Results. Patient-reported outcomes were measured using the Patient Reported Outcomes Measurement Information System (PROMIS)-29 and PROMIS emotional support scale. ANOVA assessed differences between groups, and Spearman rank correlation assessed correlations between variables. Hierarchical regression analysis determined the contributions of sociodemographic characteristics, arthritis type, and patient-reported health measures in explaining patient empowerment (α = 0.05). RESULTS: Empowerment was lower among those who were male, older, less educated, or who had lower income, osteoarthritis, less emotional support, or better physical function, although the effect was small-to-negligible for most of these variables in the final regression models. Empowerment did not differ by race/ethnicity in unadjusted or adjusted analysis. In final regression models, emotional support contributed the most to explaining patient empowerment. CONCLUSION: Emotional support is important for patient empowerment. This suggests that programs that seek to improve patient empowerment should target and measure effects on emotional support.

Stakeholder Development of an Online Program to Track Arthritis-Related Patient-Reported Outcomes Longitudinally: Live Yes! INSIGHTS.

OBJECTIVE: Patient-reported outcome measures (PROMs) are increasingly used in clinical settings but may not provide benefits to patients outside of health encounters. The Arthritis Foundation's Live Yes! Network provides an opportunity for PROM use by individuals and the network that assists individuals with managing their arthritis between encounters. Our objective was to develop a patient-reported outcomes platform for the network, Live Yes! INSIGHTS, using mixed methods and extensive stakeholder input. METHODS: A mixed methods longitudinal transformation design was used, starting with semistructured interviews to specify the main priorities of the program, literature review to identify potential PROMs, modified Delphi and nominal group technique to select final PROMs, and focus groups to guide program implementation, messaging, and use of results. We gathered input from 93 participants, including from individuals living with arthritis (74% of participants), caregivers, providers, researchers, and measurement experts. RESULTS: Our mixed methods study resulted in the selection of Patient-Reported Outcomes Measurement Information System (PROMIS)-29, PROMIS Emotional Support Short Form v2.0, and the Health Care Empowerment Questionnaire, to be deployed through a Qualtrics platform. Triangulation of data resulted in identification of potential risks and benefits, including confidentiality, ability to personally track and share data, and an opportunity to contribute to research. CONCLUSION: An accessible measurement system backed by psychometrically strong PROMs, created with robust stakeholder engagement, and linked to a national patient network sets the stage for individuals with arthritis to better monitor and improve health outcomes both outside and inside health care settings and for the network to customize programming to meet needs.

A Guide to Evaluation of Quality Improvement and Patient Safety Educational Programs: Lessons From the VA Chief Resident in Quality and Safety Program.

With the recent proliferation of quality improvement (QI) and patient safety (PS) education programs, guidance is needed on how to assess the effectiveness of these programs. Without a systematic approach, evaluation efforts may end up being disjointed, lead to excess participant burden, or yield unhelpful feedback because of poor fit with program priorities. This article presents a framework for developing a multilevel evaluation infrastructure using examples from the evaluation of the national Department of Veterans Affairs Chief Resident in Quality and Safety program, a 1-year, post-accreditation program to develop leadership and teaching skills in QI and PS. It illustrates how to apply the framework to establish evaluation priorities and methods, and shares sample results and how they are used to guide program improvements and track important outcomes at multiple levels. The framework is particularly relevant to other nonaccredited advanced QI/PS programs, yet offers useful considerations for evaluating any advanced medical education program.

Children's behavioral health needs and satisfaction and commitment of foster and adoptive parents: Do trauma-informed services make a difference?

OBJECTIVE: Caring for children in foster or adoptive care with behavioral health needs can severely stress parents, contributing to adverse outcomes for children and families. Trauma-informed services from the child welfare and mental health sectors may help prevent poor outcomes by helping children and parents identify and understand trauma and its impact on children's behavioral health and receive effective treatment. To help understand the role of trauma-informed services for the child welfare population, we examined whether trauma-informed child welfare and mental health services moderated the relationship between children's behavioral health needs and parent satisfaction and commitment. METHOD: The researchers analyzed data from a cross-sectional statewide survey of foster and adoptive parents (n = 512 respondents, 42% of 1,206 contacted) from one state. RESULTS: Foster (but not adoptive) parent ratings of trauma-informed mental health services significantly moderated the relationship between children's behavioral health needs and foster and adoptive parent satisfaction and commitment. As ratings of trauma-informed mental health services increased, the association between child behavioral health needs and parent satisfaction and commitment became nonsignificant, suggesting a buffering effect. Trauma-informed child welfare services did not moderate the relationship for foster or adoptive parents. CONCLUSIONS: Leaders and policymakers are urged to promote trauma-informed mental health services for children involved with child welfare to potentially buffer foster parents against lower parenting satisfaction and commitment. More research is needed to replicate and expand on these findings and to examine the effectiveness of trauma-informed services on other relevant child and family outcomes. (PsycINFO Database Record (c) 2018 APA, all rights reserved).

Effectiveness of a Trauma-Informed Care Initiative in a State Child Welfare System: A Randomized Study.

Trauma-informed care (TIC) initiatives in state child welfare agencies are receiving more attention, but little empirical evidence exists as to their efficacy. The purpose of this study was to assess changes in self-reported practices and perceptions of child welfare staff involved in a multifaceted, statewide TIC intervention. Ten child welfare offices were matched and randomized to an early or delayed cohort. Staff were surveyed at Time 1 prior to any intervention, Time 2 postintervention for Cohort 1, and Time 3 postintervention for Cohort 2. The survey covered six domains: trauma screening, case planning, mental health and family involvement, progress monitoring, collaboration, and perceptions of the state's overall system performance. Linear mixed modeling assessed the effect of the intervention. Cohort by time interaction was significant for three intervention targets. We demonstrate, using a rigorous study design, the mixed results of a multimodal intervention to improve trauma-informed attitudes, practices, and system performance. TIC initiatives must account for complex, dynamic contextual factors.

Foster and Adoptive Parent Perspectives on Needs and Services: a Mixed Methods Study.

Caring for children with complex needs severely stresses foster and adoptive parents, but few studies have examined their perspectives on needs and services. To examine parental views, the authors analyzed four focus groups (n = 27 participants) and one state-wide survey (n = 512 respondents, 42% of 1206 contacted) of foster and adoptive parents in one state. Results highlighted inadequate communication between providers and families, cultural and legal barriers, needs for parent training and preparation, the importance of several types of parent supports, and needs for specialized mental health treatment for the children. Surveyed parents identified children's behavior problems as their top challenge, and over half rated the availability of mental health providers who treat attachment and family as insufficient. The findings suggest specific areas in which state leaders could enhance training and supports for child welfare staff and foster and adoptive parents and improve mental health services for children in foster and adoptive care.