Publications

2024

Gompers, Annika, Elysia Larson, Katharine M Esselen, Huma Farid, and Laura E Dodge. (2024) 2024. “Financial Toxicity in Relation to Childbirth.”. Journal of Obstetric, Gynecologic, and Neonatal Nursing : JOGNN 53 (5): 477-84. https://doi.org/10.1016/j.jogn.2024.04.001.

OBJECTIVE: To measure change in financial toxicity from pregnancy to the postpartum period and to identify factors associated with this change.

DESIGN: Longitudinal survey.

SETTING: Obstetric clinics at an academic medical center in Massachusetts between May 2020 and May 2022.

PARTICIPANTS: Obstetric patients who were 18 years of age or older (N = 242).

METHODS: Respondents completed surveys that included the COmprehensive Score for financial Toxicity tool during pregnancy and in the postpartum period. We collected additional medical record data, including gestational age, birth weight, and cesarean birth. We used paired t tests to assess changes in financial toxicity before and after childbirth and one-way analysis of variance to compare average change in financial toxicity by demographic and medical variables.

RESULTS: The mean current financial toxicity score was significantly lower after childbirth (M = 19.0, SD = 4.6) than during pregnancy (M = 21.8, SD = 5.4), t(241) = 13.31, p < .001. Concern for future financial toxicity was not significantly different after childbirth (M = 8.5, SD = 2.9) compared to during pregnancy (M = 8.2, SD = 3.0), t(241) = -1.80, p = .07. Individual-level sociodemographic variables (e.g., racial/ethnic category, insurance, employment) and medical factors (e.g., cesarean birth, preterm birth) were not associated with change in financial toxicity.

CONCLUSION: Among respondents, financial toxicity worsened after childbirth, and patients are at risk regardless of their individual socioeconomic and medical conditions.

Butler, Haylie M, Maria Bazan, Luis Rivera, Kevin E Salinas, Michele R Hacker, Sophia DeLevie-Orey, Molly R Siegel, Elysia Larson, and Rose L Molina. (2024) 2024. “Prenatal Care Clinician Preferences Among Patients With Spanish-Preferred Language.”. Obstetrics and Gynecology 144 (4): 517-25. https://doi.org/10.1097/AOG.0000000000005697.

OBJECTIVE: To measure what patients with Spanish language preference and limited English proficiency value most when selecting a prenatal care clinician.

METHODS: A discrete choice experiment was administered at two large academic medical centers in Boston, Massachusetts. Participants were identified by electronic medical record, had preferred Spanish language and self-identified limited English proficiency, and either were pregnant with a completed fetal anatomy scan or had given birth within the past 12 months at the time of the study. The discrete choice experiment consisted of eight attributes to consider when selecting a prenatal care clinician: clinician Spanish proficiency, type of interpreter used, interpersonal dynamics (ie, making patients feel seen, heard, and cared for), cultural concordance, continuity of care, shared decision making, distance from home, and wait times for appointments. Descriptive statistics of demographic variables were calculated. Hierarchical Bayesian models were used to analyze discrete choice experiment data.

RESULTS: The attributes that were most important to 166 participants when choosing their prenatal care clinician were interpersonal dynamics within the patient-clinician dyad and clinician Spanish language proficiency (average importance 21.4/100 and 20.8/100, respectively). Of lowest importance were wait time to receive an appointment and continuity of care (average importance 5.1 and 6.1, respectively). Although participants highly preferred that their clinician be "fluent or near fluent in Spanish," the second most preferred option was having a clinician with only basic Spanish proficiency rather than a more advanced level of Spanish proficiency with some misunderstandings.

CONCLUSION: Our study demonstrates the importance of positive clinician-patient interpersonal dynamics and language-concordant care for patients with Spanish language preference in prenatal care. Promoting equitable patient-centered care for patients with limited English proficiency requires responding to preferences regarding clinician language proficiency and demonstrating attentiveness, empathy, and concern for prenatal care experiences.

Myrick, Jeannette C, Lily Schneider, Christina Gebel, Kathleen Clarke, Stephanie Crawford, Lucy Chie, Chloe Zera, Karen M Emmons, and Elysia Larson. (2024) 2024. “The System Can Change: A Feasibility Study of a Doula-Clinician Collaborative at a Large Tertiary Hospital in the United States.”. Implementation Science Communications 5 (1): 144. https://doi.org/10.1186/s43058-024-00682-w.

BACKGROUND: Doulas, non-clinical professionals who provide support throughout the perinatal period, can positively impact patient experiences and clinical outcomes during birth. Doulas often support hospital-based births without being employed by the hospital system, resulting in varied relationships with hospitals and clinicians. Systems-level changes are needed to maximize collaboration between hospitals and doulas to ensure facilitation of, and not barriers to, doula support. We implemented and evaluated a new program, called the "Supportive Birth Collaborative," to maximize effectiveness of doula support in hospital settings.

METHODS: We conducted a single-site feasibility study of the use of implementation mapping to make systemic changes to clinician-doula collaboration for labor and delivery. Implementation mapping consisted of five steps: developing a collaborative of program implementers and knowledge holders, conducting a needs assessment, developing a logic model, applying implementation strategies, and evaluating changes in outcomes. To evaluate change, process data were collected throughout, and implementation outcomes were measured in 2022 and again after one year of implementation via online surveys to all clinicians who provided labor and delivery care. Descriptive statistics were calculated and change over time was analyzed in Stata using log-binomial regression models with clustering to account for respondents who completed both surveys.

RESULTS: The "Supportive Birth Collaborative" (SBC) was founded in November 2021. The first meeting included 19 people, who were obstetricians, anesthesiologists, nurses, doulas, students, social workers, administrators, researchers, and individuals who had given birth at the study hospital. From 2022-2023, the SBC adopted 11 implementation strategies and piloted or fully implemented 10 of them. Implementation strategies ranged from making training dynamic, to changes in the physical environment, to changes in formal policy. In 2022, 104 clinicians participated in the survey; 97 participated in 2023. There was significant improvement in clinician-reported trust in doulas (0.23, 95% CI: 0.12, 0.34) and doula-clinician communication (0.25, 95% CI: 0.12, 0.38). Clinicians had a limited understanding of the doula's role, and that understanding did not significantly improve.

CONCLUSIONS: Using implementation mapping as a guide to collaborative work can lead to meaningful health system changes. Regular review of implementation outcomes could allow for adaptation and tailoring of implementation strategies.

2023

Regan, Mathilda, Chao Cheng, Eric Mboggo, Elysia Larson, Irene Andrew Lema, Lucy Magesa, Lameck Machumi, et al. (2023) 2023. “The Impact of a Community Health Worker Intervention on Uptake of Antenatal Care: A Cluster-Randomized Pragmatic Trial in Dar Es Salaam.”. Health Policy and Planning 38 (3): 279-88. https://doi.org/10.1093/heapol/czac100.

The provision of high-quality antenatal care (ANC) is important for preventing maternal and newborn mortality and morbidity, but only around half of pregnant women in Tanzania attended four or more ANC visits in 2019. Although there is emerging evidence on the benefit of community health worker (CHW) interventions on ANC uptake, few large-scale pragmatic trials have been conducted. This pragmatic cluster-randomized trial, implemented directly through the public sector health system, assessed the impact of an intervention that trained public sector CHWs to promote the uptake of ANC. We randomized 60 administrative wards in Dar es Salaam to either a targeted CHW intervention or a standard of care. The impact of the intervention was assessed using generalized estimating equations with an independent working correlation matrix to account for clustering within wards. A total of 243 908 women were included in the analysis of our primary outcome of four or more ANC visits. The intervention significantly increased the likelihood of attending four or more ANC visits [relative risk (RR): 1.42; 95% confidence interval (CI): 1.05, 1.92] and had a modest beneficial effect on the total number of ANC visits (percent change: 7.7%; 95% CI: 0.2%, 15.5%). While slightly more women in the intervention arm attended ANC in their first trimester compared with the standard-of-care arm (19% vs 18.7%), the difference was not significant (RR: 1.02; 95% CI: 0.84, 1.22). Our findings suggest that trained CHWs can increase attendance of ANC visits in Dar es Salaam and similar settings. However, additional interventions appear necessary to promote the early initiation of ANC. This study demonstrates that routine health system data can be leveraged for outcome assessment in trials and programme evaluation and that the results are likely superior, both in terms of bias and precision, to data that are collected specifically for science.

Kheyfets, Anna, Kali Vitek, Claire Conklin, Christianna Tu, Elysia Larson, Chloe Zera, Ronald Iverson, et al. (2023) 2023. “Development of a Maternal Equity Safety Bundle to Eliminate Racial Inequities in Massachusetts.”. Obstetrics and Gynecology 142 (4): 831-39. https://doi.org/10.1097/AOG.0000000000005322.

OBJECTIVE: The PNQIN (Perinatal-Neonatal Quality Improvement Network of Massachusetts) sought to adapt the Reduction of Peripartum Racial and Ethnic Disparities Conceptual Framework and Maternal Safety Consensus Bundle by selecting and defining measures to create a bundle to address maternal health inequities in Massachusetts. This study describes the process of developing consensus-based measures to implement the PNQIN Maternal Equity Bundle across Massachusetts hospitals participating in the Alliance for Innovation on Maternal Health Initiative.

METHODS: Our team used a mixed-methods approach to create the PNQIN Maternal Equity Bundle through consensus including a literature review, expert interviews, and a modified Delphi process to compile, define, and select measures to drive maternal equity-focused action. Stakeholders were identified by purposive and snowball sampling and included obstetrician-gynecologists, midwives, nurses, epidemiologists, and racial equity scholars. Dedoose 9.0 was used to complete an inductive analysis of interview transcripts. A modified Delphi method was used to reach consensus on recommendations and measures for the PNQIN Maternal Equity Bundle.

RESULTS: Twenty-five interviews were completed. Seven themes emerged, including the need for 1) data stratification by race, ethnicity and language; 2) performance of a readiness assessment; 3) culture shift toward equity; 4) inclusion of antiracism and bias training; 5) addressing challenges of nonacademic hospitals; 6) a life-course approach; and 7) selection of timing of implementation. Twenty initial quality measures (structure, process, and outcome) were identified through expert interviews. Group consensus supported 10 measures to be incorporated into the bundle.

CONCLUSION: Structure, process, and outcome quality measures were selected and defined for a maternal equity safety bundle that seeks to create an equity-focused infrastructure and equity-specific actions at birthing facilities. Implementation of an equity-focused safety bundle at birthing facilities may close racial gaps in maternal outcomes.

Gompers, Annika, Elysia Larson, Katharine M Esselen, Huma Farid, and Laura E Dodge. (2023) 2023. “Financial Toxicity in Pregnancy and Postpartum.”. Birth (Berkeley, Calif.) 50 (3): 606-15. https://doi.org/10.1111/birt.12710.

INTRODUCTION: The financial burden of pregnancy in the United States can be high and is associated with worse mental health and birth outcomes. Research on the financial burden of health care, such as the development of the COmprehensive Score for Financial Toxicity (COST) tool, has been conducted primarily among patients with cancer. This study aimed to validate the COST tool and use it to measure financial toxicity and its impacts among obstetric patients.

METHODS: We used survey and medical record data from obstetric patients at a large medical center in the United States. We validated the COST tool using common factor analysis. We used linear regression to identify risk factors for financial toxicity and to investigate associations between financial toxicity and patient outcomes including satisfaction, access, mental health, and birth outcomes.

RESULTS: The COST tool measured two distinct constructs of financial toxicity in this sample: current financial toxicity and concern over future financial toxicity. Racial/ethnic category, insurance, neighborhood deprivation, caregiving, and employment were associated with current financial toxicity (P < 0.05 for all). Only racial/ethnic category and caregiving were associated with concern over future financial toxicity (P < 0.05 for all). Both current and future financial toxicity were associated with worse patient-provider communication, depressive symptoms, and stress (P < 0.05 for all). Financial toxicity was not associated with birth outcomes or keeping obstetric visits.

CONCLUSIONS: The COST tool captures two constructs among obstetric patients, current and future financial toxicity, both of which are associated with worse mental health and patient-provider communication.

Salinas, Kevin E, Maria Bazan, Luis Rivera, Haylie Butler, Elysia Larson, Jeanne-Marie Guise, Michele R Hacker, Anjali J Kaimal, and Rose L Molina. (2023) 2023. “Experiences and Communication Preferences in Pregnancy Care Among Patients With a Spanish Language Preference: A Qualitative Study.”. Obstetrics and Gynecology 142 (5): 1227-36. https://doi.org/10.1097/AOG.0000000000005369.

OBJECTIVE: To explore Spanish-speaking patients' experiences and preferences regarding communication during pregnancy care with specific attention to language barriers.

METHODS: Patients with a Spanish language preference who gave birth between July 2022 and February 2023 at an academic medical center were invited to participate in focus groups. Focus groups were held over Zoom, audio-recorded, transcribed in Spanish, translated into English, and reviewed for translation accuracy. Thematic analysis was conducted with deductive and inductive approaches. Three investigators double-coded all transcripts, and discrepancies were resolved through team consensus.

RESULTS: Seven focus groups (27 total participants, range 2-6 per group) were held. Three key themes emerged regarding patient experiences and communication preferences when seeking pregnancy care: 1) language concordance and discordance between patients and clinicians are not binary-they exist on a continuum; 2) language-discordant care is common and presents communication challenges, even with qualified interpreters present; and 3) language discordance can be overcome with positive interpersonal dynamics between clinicians and patients.

CONCLUSION: Our findings highlight the importance of relationship to overcome language discordance among patients with limited English proficiency during pregnancy care. These findings inform potential structural change and patient-clinician dyad interventions to better meet the communication needs of patients with limited English proficiency.

Falade, Ebunoluwa, Ronald M Cornely, Caroline Ezekwesili, Juliet Musabeyezu, Ndidiamaka Amutah-Onukagha, Tajh Ferguson, Christina Gebel, Sayida Peprah-Wilson, and Elysia Larson. (2023) 2023. “Perspectives on Cultural Competency and Race Concordance from Perinatal Patients and Community-Based Doulas.”. Birth (Berkeley, Calif.) 50 (2): 319-28. https://doi.org/10.1111/birt.12673.

BACKGROUND: As awareness of perinatal health disparities grows, many birthing people of color are seeking racially and/or culturally concordant providers. We described preferences for, and perceptions of, racial and/or cultural concordance and cultural competence in the context of the doula-client relationship.

METHODS: Seven focus group discussions (FGDs) with a total of 27 participants were conducted to investigate the perspectives of patients and doulas across Massachusetts, United States. An interdisciplinary stakeholder group informed the data collection instrument content and design. Two coders achieved 0.89 Kappa for inter-rater reliability prior to coding the remaining transcripts. We used a modified grounded theory approach and Dedoose software for coding.

RESULTS: Two major themes emerged. First, cultural competency in doula care is a learning process, with definitions consistent with terms such as "cultural humility" and "structural competency." Doulas discussed listening to clients' needs rather than making assumptions, the importance of understanding privilege and power dynamics, and self-initiating relevant education beyond formal doula training. Second, trust was most frequently cited as an indicator of successful doula-patient relationships.

CONCLUSIONS: Most study participants specified the importance of cultural humility in doula-client relationships. Doulas approaching the relationship humbly with a willingness to learn and challenge their own assumptions-regardless of the level of concordance-can make a meaningful impact on the perinatal experience.

Luckett, Rebecca, Doreen Ramogola-Masire, Devon A Harris, Annika Gompers, Kelebogile Gaborone, Lorato Mochoba, Lapelo Ntshese, et al. (2023) 2023. “Feasibility and Acceptability of an HPV Self-Testing Strategy: Lessons from a Research Context to Assess for Ability to Implement into Primary Care at a National Level in Botswana.”. Frontiers in Global Women’s Health 4: 1300788. https://doi.org/10.3389/fgwh.2023.1300788.

BACKGROUND: The WHO strategy for cervical cancer elimination strives to achieve 70% coverage with high-performance cervical screening. While few low- and middle-income countries have achieved this, high-risk human papillomavirus (hrHPV) self-testing creates the possibility to rapidly upscale access to high-performance cervical screening across resource settings. However, effective hrHPV screening requires linkage to follow-up, which has been variable in prior studies. This study developed and tested an implementation strategy aimed at improving screening and linkage to follow-up care in South East District in Botswana.

METHODS: This study performed primary hrHPV self-testing; those with positive results were referred for a triage visit. Withdrawals for any reason, loss-to follow-up between hrHPV test and triage visit, and number of call attempts to give hrHPV results were also documented. Acceptability of the program to patients was measured as the proportion of patients who completed a triage visit when indicated, meeting the a priori threshold of 80%. Feasibility was defined as the proportion of participants receiving the results and attending follow-up. To assess the associations between participant characteristics and loss-to-follow-up we used log-binomial regressions to estimate risk ratios and 95% confidence intervals (CI).

RESULTS: Enrollment of 3,000 women occurred from February 2021 to August 2022. In total, 10 participants withdrew and an additional 33 were determined ineligible after consent, leaving a final cohort of 2,957 participants who underwent self-swab hrHPV testing. Half (50%) of participants tested positive for hrHPV and nearly all (98%) of participants received their hrHPV results, primarily via telephone.  Few calls to participants were required to communicate results: 2,397 (82%) required one call, 386 (13%) required 2 calls, and only 151 (5%) required 3-5 calls. The median time from specimen collection to participant receiving results was 44 days (IQR, 27-65). Of all hrHPV positive participants, 1,328 (90%) attended a triage visit.

DISCUSSION: In a large cohort we had low loss-to-follow-up of 10%, indicating that the strategy is acceptable. Telephonic results reporting was associated with high screening completion, required few calls to participants, and supports the feasibility of hrHPV self-testing in primary care followed by interval triage.

2022

Clarke-Deelder, Emma, Eliudi Eliakimu, Redempta Mbatia, Meghan A Bohren, Irene Mashasi, and Elysia Larson. (2022) 2022. “Measuring User Experience of Care Among Caregivers of Sick Children: Validation and Descriptive Analysis in a Sample of 75 Health Facilities in Rural Tanzania.”. Tropical Medicine & International Health : TM & IH 27 (3): 317-29. https://doi.org/10.1111/tmi.13730.

OBJECTIVE: User experience is an important aspect of quality of care that is highly valued by patients. However, there are currently no validated tools for measuring user experience among caregivers of sick children in low- and middle-income countries. We aimed to develop and validate a measure of user experience in this population in primary healthcare facilities in rural Tanzania, where major quality improvement efforts to date have not included a large focus on user experience. We then aimed to describe variation in user experience between and within facilities.

METHODS: Informed by theory and formative qualitative research, we developed questions to measure user experience across three domains: prompt care, respect, and communication. We then conducted interviewer-administered surveys with caregivers of sick children. Using survey data, we conducted psychometric analyses to inform the development of a composite measure of user experience. Finally, we used multilevel models to describe variation in user experience and examine associations with facility, patient, and caregiver characteristics.

RESULTS: Surveys were completed by 1085 caregivers across 75 facilities. In exploratory factor analysis, user experience items did not group according to theoretical domains. We therefore assessed items individually and designed a single 8-item additive measure of user experience. Using this composite measure, and adjusting for differences in case mix across facilities, we found that 69% of variation in user experience was within facilities and 31% was between facilities. Smaller facility size and more caregiver education were positively associated with user experience.

CONCLUSIONS: We found that user experience varied significantly across health facilities in rural Tanzania, highlighting opportunities for improvement. Measurement tools are needed to inform efforts to improve user experience and monitor changes over time. The scale developed in this study could serve as a starting point for the measurement of user experience among caregivers in similar settings.