Care Navigation Research Articles

Care navigation platform fills gap in MH service, resource access

A navigation platform, launched Oct. 22, aims to help individuals find the right support for mental health, substance use and relationship challenges, whether it be therapists, psychiatrists, support groups or self‐help resources. The platform supports behavioral health providers and other care platforms in expanding their reach by helping individuals with new clients and patients, officials stated.

Understanding and Assisting the Recovery of Non-English-Speaking Trauma Survivors: Assessment of the NESTS Pathway.

Spanish-speaking trauma and burn patients have unique needs in their post-discharge care navigation. The confluence of limited English proficiency, injury recovery, mental health, socioeconomic disadvantages, and acute stressors following hospital admission converge to enhance patients' vulnerability, but their specific needs and means of meeting these needs have not been well described. This prospective, cross-sectional survey study describes the results of a multi-institutional initiative devised to help Spanish-speaking trauma and burn patients in their care navigation after hospitalization. The pathway consisted of informational resources, intake and follow up surveys, and multiple points of contact with a community health worker who aids in accessing community resources and navigating the healthcare system. From January 2022-November 2023, there were 114 patients identified as eligible for the NESTS pathway. Of these, 80 (70.2%) were reachable and consented to participate, and 68 of these patients were approached in person during their initial hospitalization. After initial screening, 60 (75.0%) of the eligible patients had a mental health, social services, or other need identified via our survey instrument. During the initial consultation with the CHW, 48 of the 60 patients with any identified need were connected to a resource (80%). Food support was the most prevalent need (N=46, 57.5%). More patients were connected to mental health resources (N=16) than reported need in this domain (N=7). The NESTS pathway identified the specific needs of Spanish-speaking trauma and burn patients in their recovery, notably food, transportation, and utilities. The pathway also addressed disparities in post-discharge care by connecting patients with community resources, with particular improvement in access to mental healthcare.

Collaborative Dementia Care During the New Therapeutic Era

This Viewpoint advocates for the implementation of collaborative care with care navigation in the diagnosis and treatment of Alzheimer disease.

Utilizing intricate care networks: An ethnography of patients and families navigating palliative care in a resource-limited setting.

The increase in non-communicable disease burdens and aging populations has led to a rise in the need for palliative care across settings. In resource-limited settings such as Indonesia, however, notably in rural areas, there is a lack of professional palliative care. Little is known about specific palliative care navigation, as previous studies have mostly focused on cancer care navigation. A locally tailored approach is crucial. To explore how patients and families navigate palliative care and the problems they experience. An ethnographic study using in-depth interviews and observations, analyzed using reflexive thematic analysis. Interviews with 49 participants (patients, family caregivers, and health professionals) and 12 patient-family unit observations in Banyumas, Indonesia. Patients and families navigated palliative care through different strategies: (1) helping themselves, (2) utilizing complementary and alternative medicine, (3) avoiding discussing psychological issues, (4) mobilizing a compassionate and advocating community, and (5) seeking spiritual care through religious practices. Our participants used intricate care networks despite limited resources in navigating palliative care. Several problems were rooted in barriers in the healthcare system and a lack of palliative care awareness among the general public. Local primary health centers could be potential palliative care leaders by building upon pre-existing programs and involving community health volunteers. Cultivating a shared philosophy within the community could strengthen care collaboration and support.

Integration of a facilitated access pathway for contraception into alcohol and other drug treatment services: A cohort study comparing metropolitan and regional settings.

Women who attend alcohol and other drug (AOD) services experience higher rates of unintended pregnancy, and access less contraception, than the general population. This study aims to observe contraceptive initiation and use after contraception services were offered at metropolitan and regional AOD services. Clinical staff were provided contraception education. One hundred women aged 16-49 were recruited from two services between 2017 and 2021. Women completed a questionnaire on their obstetrics and gynaecological history, pregnancy plans and contraception use. Women were provided education on contraception options and offered referral to a contraception pathway. The primary outcome was initiation of highly reliable contraception; secondary outcomes were the types of contraception initiated, and contraception use and pregnancy at 12 months. We compared the initiation of contraception across the two study sites. At baseline, 91% of women were not planning a pregnancy within 12 months, with 21% of these using highly reliable contraception. Of all women not planning a pregnancy, 28% initiated highly reliable contraception via the pathway (2% metropolitan, 51% regional, p < 0.001), with intrauterine devices being the most frequent method initiated (15%). At 12 months, 44% were using highly reliable contraception and 15% had recorded pregnancies. Contraception pathways for women in AOD treatment can improve initiation of highly reliable methods of contraception, although pregnancy rates were still high and there were large differences between the study sites. Care navigation and clinical champions are some potential facilitators to contraception access, and understanding additional barriers to access may be useful.

A comparative analysis of supportive care service needs in patients with pancreas versus other gastrointestinal cancers.

272 Background: Pancreatic ductal adenocarcinoma (PDAC) is the third leading cause of cancer death and presents with advanced incurable disease approximately 75% of the time, contributing to the lowest survival rate and worst multidimensional quality of life (QOL) compared to other adult solid tumors. Standardized screening for early integration of interdisciplinary care (IDC) services, advance care planning, and utilization of electronic patient-reported outcomes (ePROs) for improved QOL and symptom management are recommended, yet the literature is lacking in rigorously-conducted PDAC needs assessments, an important prerequisite to care model design. Methods: Between September 12, 2023 and May 7, 2024, 525 patients with gastrointestinal (GI) malignancies were sent a Supportive Care Questionnaire (SCQ), an ePRO survey assessing multi-dimensional IDC needs prior to first visit at an NCI-designated comprehensive cancer center in the Pacific Northwest. The SCQ includes validated surveys and a total of 12 domains chosen by the IDC service responsible for management of the given need(s), who also set trigger thresholds for referral to the IDC service. Rates of positive screens for each service were compared by cancer type (PDAC, Colorectal [CRC], gastroesophageal [GE]). Results: 340 (65%) SCQs were completed (57% via MyChart, 43% in person) similarly across disease groups; with an average of 10 mins to complete. Respondents were 49% female/59% male (Race: White (76.5%), Asian (10%), Black/African-American (4.5%), Other/Unknown (9%)/Ethnicity Non-Hispanic (90%, Hispanic 7.6%), Other/Declined/Unknown 2.4%), with primary language spoken being English (92%), Spanish (3.5%), simplified Chinese (1.5%) and Other (2.5%). Table 1 shows – by GI cancer type –the total number of responses and the proportion of patients who screened positive for one or more IDC services. Conclusions: Patients with PDAC had the greatest need for IDC services with most frequent positive screens indicating need for nutrition, social work, palliative care and patient navigation services when surveyed in our institution-wide program of SC screening for all new GI cancer patients. Results will inform further development of IDC services in PDAC and other GI cancers, including via staff prediction modeling. The SCQ is also being considered for SC screening and management across the Canopy Cancer Collective, a nationwide learning health network of pancreas cancer programs. PDAC CRC GE Surveyed 187 237 101 Completed 122 (65%) 153 (65%) 65 (64%) Positive Screen 68 (56%) 70 (46%) 26 (40%)

Transgender Latinas’ Perspectives on HIV PrEP Uptake, Condom Use, and Medically Supervised Gender-Affirming Hormone Therapy: Insights From ChiCAS Qualitative Interviews

There is a dearth of HIV prevention behavioral interventions for transgender Latinas, despite this population's HIV risk. ChiCAS (Chicas Creando Acceso a la Salud) is an intervention to increase PrEP, condom, and gender-affirming hormone therapy (GAHT) use among transgender Latinas. To inform future work, semistructured interviews were conducted postintervention with 28 ChiCAS participants. Thematic analysis with inductive coding was used. Six themes emerged: (1) health-related priorities include sexual health and avoiding discrimination; (2) safe and collaborative community is of high importance; (3) interactive education with time for sharing stories and discussion was valued; (4) PrEP uptake was facilitated through awareness and health care navigation; (5) accessing GAHT depends on cost, clinic location, and individual goals; (6) ChiCAS could be improved with more PrEP/GAHT details and social connection. Interventions with goals similar to those of ChiCAS should prioritize building community, PrEP and GAHT education tailored to participants’ needs, and emphasize health care options available locally.

Development of a novel cancer diagnostic center to facilitate care coordination for patients with new or suspected diagnoses of cancer.

81 Background: Navigating a cancer diagnosis is a multifaceted challenge, characterized by intricate care coordination that creates potential for workup and treatment delays, lapses in care, and potentially negatively affecting clinical outcomes. We have developed a novel physician and advanced practitioner-led cancer diagnostic program (CDP) to help navigate patients with a suspected cancer through the diagnostic and staging workup, discussion of results, and linkage to oncologic care. Patients are referred to the CDP, an administrative intake coordinator creates a medical chart, verifies insurance, gathers records, and schedules appointments. An intake nurse reaches out within 24 hours to obtain clinical information and review of systems. Patients are offered an in-person or video visit with the advanced practitioner for history and physical, labs, and further coordination of testing. Here, we aim to describe the demographic and clinical patterns of referral and clinical outcomes of patients who were referred to a CDP over one calendar year. Methods: We retrospectively analyzed 154 patients with a new cancer diagnosis to have at least 1 encounter at the Johns Hopkins CDP between January 1, 2022, and December 31, 2022. Data were retrospectively collected from medical records and stored within Johns Hopkins REDCap. Descriptive analyses were used to describe the data. Results: Among the 154 total patients included in this analysis, 65.6% were White, 24.7% were Black, 3.2% were Asian, and 1.9% were of Hispanic, Latino, or Spanish origin. Insurance coverage was most frequently (46.8%), Medicare (40.3%), and Medicaid (8.4%). Referral distribution shows 50 inpatient and 104 outpatient referrals. Primary cancer diagnoses were most often gastrointestinal (39.6%), upper airway and lung (26.6%), and genitourinary (9.1%). Conclusions: The Johns Hopkins CDP exemplifies the potential for dedicated diagnostic and treatment initiation programs to improve oncologic care, particularly for vulnerable populations. The center facilitates expedited diagnostic resolution, to increased ease of workup for patients and providers, and potentially improve clinical outcomes such as linkage to care and time to treatment. Accepting referrals from inpatient and outpatient settings captures a broad patient pool, including those who may otherwise experience lapses in care owing to complex care navigation needs. In conclusion, we describe a novel care delivery model to potentially optimize healthcare delivery in oncologic care. Inpatient Referral Outpatient Referral Percent minority populations 34% 23.1% Stage 4 at diagnosis 74% 52.9% Patients initiating treatment with curative intent 42.3% 30% Median length of hospitalization 7 days N/A Median time from pathology results to discharge -2.5 days N/A Median time from pathology results to treatment initiation 20 days 16.5 days

Evaluating the tailored implementation of a multisite care navigation service for mental health in rural and remote Australia (The Bridging Study): protocol for a community-engaged hybrid effectiveness-implementation study

BackgroundA dramatic decline in mental health of people worldwide in the early COVID-19 pandemic years has not recovered. In rural and remote Australia, access to appropriate and timely mental health services has been identified as a major barrier to people seeking help for mental ill-health. From 2020 to 2021 a care navigation model, Navicare, was co-designed with rural and remote communities in the Greater Whitsunday Region of Central Queensland in Australia. The Exploration, Preparation, Implementation and Sustainment (EPIS) framework was used to design and guide multiple aspects of a multisite study, The Bridging Study, to evaluate the implementation of Navicare in Australia.MethodsA community-engaged hybrid effectiveness-implementation study design will focus on the tailored implementation of Navicare at three new sites as well as monitoring implementation at an existing site established since 2021. Study outcomes assessed will include sustained access as the co-primary outcome (measured using access to Navicare mental health referral services) and Proctor’s Implementation Outcomes of feasibility, acceptability, appropriateness, adoption, fidelity, implementation cost, and sustainability. Data collection for the implementation evaluation will include service usage data, community consultations, interviews, and workshops; analysed using mixed methods and guided by EPIS and other implementation frameworks. Pre-post effectiveness and cost-consequence study components are embedded in the implementation and sustainment phases, with comparison to pre-implementation data and value assessed for each EPIS phase using hospital, service, and resource allocation data. A scaling up strategy will be co-developed using a national roundtable forum in the final year of the study. Qualitative exploration of other aspects of the study (e.g., mechanisms of action and stakeholder engagement) will be conducted.DiscussionOur study will use tailoring to local sites and a community-engaged approach to drive implementation of a mental health care navigation service in rural and remote Australia, with expected benefits to mental healthcare access. This approach is consistent with policy recommendations nationally and internationally as building blocks for rural health including the World Health Organization Framework for Action on Strengthening Health Systems to Improve Health Outcomes.Trial registrationProspectively registered on April 2, 2024, on the Australian New Zealand Clinical Trials Registry, no. ACTRN12624000382572. https://anzctr.org.au/Trial/Registration/TrialReview.aspx?id=386665&isReview=true.

Physical Therapists in Primary Care in the United States: An Overview of Current Practice Models and Implementation Strategies.

Given physician shortages and increasing burden in primary care in the United States, inclusion of a physical therapist in a primary care team can improve patient access to care, optimize care navigation, and reduce the overall cost of care for patients with physical and functional needs.

Needs of family caregivers of hospitalised adults with dementia during care transitions: a qualitative study in a US Department of Veterans Affairs Hospital

ObjectiveTo identify the needs of caregivers of hospitalised adults with dementia in the hospital and during care transitions.DesignPragmatic qualitative inquiry with semi-structured interviews.SettingMichael E. DeBakey Veterans Affairs Medical Center in...

Health care transition models in spina bifida care: evidence-based lessons in support of neurosurgical practice.

The purpose of this study was to conduct a literature review on transition programs from pediatric to adult care and the role of neurosurgery as individuals with spina bifida (SB) transition, and to provide a framework for neurosurgical providers to assist in the transition to adult-centered care. A comprehensive literature review was conducted according to the PRISMA statement, with a search in Medline and Embase to identify US clinical programs reporting on their experiences establishing a transition program for adolescents and young adults with SB. Data were collected for authors, year, transition clinic location, model of care for transition clinic, ages served, and specialty clinical team. The literature search yielded 698 articles, 5 of which met the inclusion criteria. These 5 studies included 4 transition programs for which models of care and approach to transition, clinical services involved, establishment of goals, and age of initiation and transition were identified. All programs described setting transition goals, ranging from community services, to self-management, to health care navigation, to patient-driven goals, with 1 program reporting a quality-of-life measurement component to their model. Robust SB transition programs can be established by applying the expanded chronic care model, reviewing lessons learned by other programs, advocating at the institutional level, and seeking support via professional organizations. While the comprehensive role of neurosurgical providers in these programs is still being defined, a shared vision of enhancing the health and quality of life for individuals with SB and their families is needed by all subspecialists involved.

Care Navigation and Coordination Program on Reducing Hospital Use for Adults with Complex Health and Psychosocial Needs in South West Sydney, Australia.

Complex and siloed health and social service systems can be difficult for people to navigate. The fragmented and poorly linked services leads to ineffective communication between care teams, delayed access to services, concerns regarding quality and safety of patient care, as well as patient frustration and disengagement. Planned Care for Better Health (PCBH) is a community-based care navigation and coordination program for people with complex health and psychosocial needs who are at risk of future hospitalisation. It focuses on early identification and holistic care to remove barriers and improve access to healthcare. By including a persons', family and carers in planning, listening to their needs, supporting the person to achieve their goals, and empowering them to make decisions on their own health, PCBH aims to enhance clients' healthcare experience and reduce preventable hospital utilisation. Building trusting and collaborative relationships with clients, families, carers, and health service providers requires commitment. Acknowledging and addressing psychosocial needs is critical for enhancing health outcomes. Equipping patients with self-management skills and knowledge to navigate and engage support services may generate lasting effects, even post-program enrolment. PCBH is associated with a notable reduction in unplanned hospitalisations and total bed days. However, reduction in ED presentations is similar between the intervention and comparison cohorts. Future initiatives should focus on a shared vision of integrated care, robust leadership, and participative co-creation with service-level stakeholders. Sustained program establishment, a multidisciplinary care coordinator team, and an early creation of robust evaluation strategy must be considered.

Engagement and Satisfaction With Care Navigation Support Following Telehealth Autism Evaluation.

Care navigation support is designed to help connect families with health care resources. Given that children with autism have more unmet needs than their peers, such a service may be especially valuable to families who have recently received a diagnosis. This study sought to examine engagement in care navigation support after an autism telehealth evaluation. Specifically, we report on what demographic and diagnostic factors predicted engagement in care navigation support and satisfaction with this service. Care navigation was offered to 220 families receiving autism telehealth evaluations between April 2020 and April 2022. Survey data from initial evaluation appointments and 2 follow-up care navigation meetings (approximately 1-3 months and approximately 9-12 months after evaluation), along with data from medical records, were collected and analyzed to determine whether any traits predicted engagement in care navigation. Satisfaction with care navigation was also analyzed. Of 220 families, 48.2% (n = 106) participated in a care navigation meeting within 1 to 3 months after an evaluation and 59.5% (n = 131) participated in at least 1 meeting across 2 time periods. The findings did not support the hypothesis that a diagnosis of autism would predict engagement. Analyses found that child sex (female compared with male) and child race and ethnicity (children of color compared with White children) predicted engagement. For those who engaged in care navigation, high satisfaction was reported. Participants' engagement rates and satisfaction levels suggest care navigation is a valuable service for families after a telehealth autism evaluation.

In search of strategies to mitigate financial toxicity in survivorship care: A survey of 347 head and neck cancer survivors.

11060 Background: High costs of cancer treatment exert substantial financial toxicity for patients undergoing treatment. Growing literature suggests lasting financial toxicity (FT) after treatment completion. This calls for the development and integration of mitigating strategies in survivorship care to reduce FT; thereby improving the overall well-being of survivors. Methods: Cross-sectional survey data from 347 head and neck cancer survivors were analyzed to explore the relationship between FT and potential targets for intervention. We measured FT using the COmprehensive Score for financial Toxicity (COST, v1), and defined severe, moderate, and mild-to-no FT as having COST score ≤13, 14 to 25, and ≥26, respectively. The survey also collected information on demographics, quality of life, work and activity impairment, and cancer care coordination (CCC) communication and navigation subscales. We conducted logistic regression to examine which COST item is most predictive of severe FT, and mediation analysis using structural equation model to explore potential targets for interventions to reduce FT. Results: The average age of respondents was 65.5 yrs (SD=11.3). 334 completed COST; 6.3%, 22.2% reported severe and moderate FT, respectively. Study cohort included 20% diagnosed within 2 yrs, 45% 3-4 yrs and 35% ≥5 yrs; the proportion of patients reporting severe FT did not decrease by year since diagnosis (6%, 5.3%, and 7.7%, respectively, P=0.73). Of the 11 items in COST, financial stress was most predictive of severe FT. Survivors who rated financial stress as “very much” or “quite a bit” were 92.8 (P=0.02) times more likely to have severe FT. Higher financial stress was significantly associated with being &lt; age 65, having higher comorbidity score, lower CCC-navigation score, higher activity impairment; navigation and activity impairment are potentially actionable. None of these four variables were statistically significantly associated with severe FT. Mediation analysis showed financial stress has strong mediation effect on severe FT, and survivors with low CCC-navigation scores and high activity impairment were 3.2 times (95% CI: 1.3 – 7.8; P=0.01) and 2.5 (95% CI: 1.1 – 5.2; P=0.02) more likely, respectively, to report high financial stress. Survivors with high financial stress were significantly more likely to be interested or very interested in receiving resources covering financial issues compared to those without (63.4% vs 17.8%, P&lt;0.01). Conclusions: Survivorship care that incorporates interventions designed to improve coordination and navigation and decrease activity impairment can potentially mitigate FT for cancer survivors through reducing their financial stress. The Centers for Medicare and Medicaid Services began paying for navigation services in 2024, opening the opportunity to integrate these interventions into covered navigation services.

Correlation of significant delays and ethnic disparities in the receipt of treatment, palliative care, and supportive care interventions in pancreatic adenocarcinoma.

e16355 Background: In patients with pancreatic adenocarcinoma (PDAC), immediate treatment initiation is preferred. Early palliative care initiation has also improved quality of life and symptom burden. However, the timing of real-world treatment and palliative care initiation and possible ethnic disparities are not well understood. The objective of this study was to evaluate the timing of care initiation in a mainly Hispanic population of PDAC patients. Methods: We conducted a retrospective cohort study that included patients diagnosed with PDAC from 2014 to 2023 at Loma Linda University Health (the only tertiary care center for two large Hispanic-majority counties with large rural populations). Data were obtained on the presence and timing of appropriate provider referrals, care establishment, treatment, advanced care planning, and hospital admissions. We used a Wilcoxon rank-sum test to compare Hispanic and non-Hispanic patients regarding the time to treatment initiation and palliative care initiation. Results: 263 PDAC patients were identified (mean age 66, 57% female, 47% Hispanic, 67% head tumor, 78% stage III/IV). After diagnosis, 93% of patients were referred to medical oncology, 82% to surgical oncology, 61% to palliative care, and 30% to genetic testing. An advanced directive or physician orders for life-sustaining treatment was completed for 24% of patients. The time to care initiation is as follows: a median of 23 days (IQR 14, 54) from diagnosis to the first medical oncology visit, 13 days (IQR 6, 37) to the first surgical oncology visit, 73 days (IQR 24, 132) to the first palliative care visit and 133 days (IQR 47, 329) to hospice referral. 64% of hospice referrals were placed within the last two weeks of life. Hispanic patients had a significantly longer time to treatment initiation (68 days vs. 48 days, p= 0.008) but similar times to palliative care initiation (73 vs 74 days, p= 0.64). Hispanics also had a lower rate of completing genetic testing (45% to 66%, p= 0.07). Conclusions: In our retrospective cohort study, significant delays in establishing care with oncology, palliative care, and hospice initiation in patients with PDAC were noted. Low rates of advanced care planning were also noted despite guideline recommendations for early-focused symptomatic interventions and advanced care planning. Hispanic patients had significantly longer time to treatment initiation and lower rates of genetic testing. These results indicate a need for improved targeted patient care navigation for multidisciplinary PDAC management, particularly in Hispanic patients.

Timeliness of breast cancer care: Real-world experience at a tertiary care and a public safety-net hospital.

e13712 Background: Advances in breast cancer diagnostics and therapeutics have led to early cancer detection and an overall decrease in morbidity and mortality rates; nevertheless, cancer care disparity still exists and highlights areas of unmet need in cancer care delivery. Cancer navigator programs have been used as a strategy to reduce disparities arising from social determinants of health. We compared the timeliness of breast cancer care at UCLA Medical Center (UCLA), a tertiary care academic hospital, and at Olive View-UCLA Medical Center (OVMC), a safety-net hospital. This study highlights the benefits of cancer care navigation and streamlined workflow processes in bridging disparity gaps. Methods: In this retrospective cohort study, we examined patients diagnosed with breast cancer between 2018 and 2019 at UCLA and OVMC. A total of 100 patients were identified at each site. Demographics data, including age, race, ethnicity, pathology, and staging, were collected. For time interval analysis along the breast cancer care timeline, the mean number of days from the initial imaging date (i.e. either screening or diagnostic mammogram, with the latter if the patient presented with signs and symptoms of breast cancer) was compared with each diagnostic and therapeutic time point. These included time between screening and diagnostic mammograms (if available), time to biopsy, time to MRI, time to surgery, and time to treatment. Results: Mean age (years) at diagnosis was 62.0 and 57.5 at UCLA and OVMC, respectively (p=0.024). Racial distribution showed 60% White, 14% Asian, 7% Black, 7% Mixed, and 4% Other at UCLA, compared to 72%, 9%, 5%, 0%, and 0% at OVMC, respectively (p=0.01). Ethnicity comparison showed 11% Hispanic/Latino at UCLA versus 52% at OVMC (p&lt;0.001). Breast cancer stage at diagnosis was not significantly different between sites. The time interval (days) from screening to diagnostic mammogram was significantly longer at OVMC compared to UCLA (35.1 versus 14.6, p=0.007); however, no statistically significant differences were observed from time to biopsy (27.3 versus 29.5, p=0.651), time to MRI (54.7 versus 49.9, p=0.703), time to neoadjuvant chemotherapy (73.4 versus 48.7, p=0.236), time to surgery (97.2 versus 106.2, p=0.523), time to adjuvant chemotherapy (158.6 versus 139.5, p=0.4), and time to radiation therapy (192.9 versus 198.6, p=0.796) between UCLA and OVMC, respectively. Conclusions: Our study shows that the timeliness of breast cancer care at UCLA and OVMC was overall comparable. This result can be attributed to the implementation of cancer navigator programs at OVMC as well as streamlined breast cancer detection workflow developed in multi-disciplinary collaboration across numerous departments. We believe this workflow can be expanded to all tumor types and be shared with other safety net facilities in order to bridge gaps in cancer care delivery for oncology patients.

Lost in the System: Responsibilisation and Burden for Women With Multiple Long-Term Health Conditions During Pregnancy.

Over a fifth of pregnant women are living with multiple long-term health conditions, which is associated with increased risks of adverse outcomes for mothers and infants. While there are many examples of research exploring individuals' experiences and care pathways for pregnancy with a single health condition, evidence relating to multiple health conditions is limited. This study aimed to explore experiences and care of women with multiple long-term health conditions around the time of pregnancy. Semistructured interviews were conducted between March 2022 and May 2023 with women with multiple long-term health conditions who were at least 28 weeks pregnant or had had a baby in the last 2 years, and healthcare professionals with experience of caring for these women. Participants were recruited from across the United Kingdom. Data were analysed using thematic analysis. Fifty-seven women and 51 healthcare professionals participated. Five themes were identified. Women with long-term health conditions and professionals recognised that it takes a team to avoid inconsistent care and communication, for example, medication management. Often, women were required to take a care navigation role to link up their healthcare providers. Women described mixed experiences regarding care for their multiple identities and the whole person. Postnatally, women and professionals recognised a downgrade in care, particularly for women's long-term health conditions. Some professionals detailed the importance of engaging with women's knowledge, and recognising their own professional boundaries of expertise. Many participants described difficulties in providing informational continuity and subsequent impacts on care. Specifically, the setup of care systems made it difficult for everyone to access necessary information, especially when care involved multiple sites. Pregnant women with long-term health conditions can experience a substantial burden of responsibility to maintain communication with their care team, often feeling vulnerable, patronised, and let down by a lack of acknowledgement of their expertise. These results will be used to inform the content of coproduction workshops aimed at developing a list of care recommendations for affected women. It will also inform future interventional studies aimed at improving outcomes for these women and their babies. Our Patient and Public Involvement group were involved in the design of the study and the analysis and interpretation of the data, and a public study investigator was part of the author group.

"If You Plant That Seed, It Will Grow": A Qualitative Study to Improve Linkage to Care Among Patients With Methamphetamine Use Disorder in Emergency Department Settings.

Methamphetamine addiction is a serious and difficult-to-treat disorder. Existing treatment options are limited, and patient perspectives on effective strategies are lacking. Emergency departments (EDs) may be a critical entry point for individuals with methamphetamine use disorder (MUD) to be identified and linked to treatment. We aimed to understand patients' perspectives regarding their methamphetamine use and related ED experiences and how to improve linkage to substance treatment. Between July and November 2022, semistructured qualitative interviews were conducted with adult patients with MUD in an urban safety-net healthcare setting in Denver, Colorado. Interviews were recorded, summarized, and analyzed using the Rapid Assessment Process. During the interviews, 18 patients shared their experiences. Participants described feeling stigmatized and experiencing a lack of communication from ED staff during their visit. Additionally, participants shared the perception that ED staff often did not take their health concerns seriously once substance use was identified. Participants were uncertain about overdose risk and felt that their psychiatric symptoms complicated treatment. Referrals to treatment were lacking, and participants supported a care navigation intervention that incorporates elements of contingency management. Participants also shared the importance of ED staff recognizing their social needs and being empathetic, trauma-informed, and flexible to meet patients where they are regardless of their readiness to seek treatment. Treatment options and entry points for individuals with MUD are currently limited. The patient perspectives described here are helpful in developing services to support, engage, and link individuals to MUD services after discharge from ED services.

Perceptions and outcomes of an embedded Alzheimer Society First Link Coordinator in rural primary health care memory clinics

BackgroundPrimary health care has a central role in dementia detection, diagnosis, and management, especially in low-resource rural areas. Care navigation is a strategy to improve integration and access to care, but little is known about how navigators can collaborate with rural primary care teams to support dementia care. In Saskatchewan, Canada, the RaDAR (Rural Dementia Action Research) team partnered with rural primary health care teams to implement interprofessional memory clinics that included an Alzheimer Society First Link Coordinator (FLC) in a navigator role. Study objectives were to examine FLC and clinic team member perspectives of the impact of FLC involvement, and analysis of Alzheimer Society data comparing outcomes associated with three types of navigator-client contacts.MethodsThis study used a mixed-method design. Individual semi-structured interviews were conducted with FLC (n = 3) and clinic team members (n = 6) involved in five clinics. Data were analyzed using thematic inductive analysis. A longitudinal retrospective analysis was conducted with previously collected Alzheimer Society First Link database records. Memory clinic clients were compared to self- and direct-referred clients in the geographic area of the clinics on time to first contact, duration, and number of contacts.ResultsThree key themes were identified in both FLC and team interviews: perceived benefits to patients and families of FLC involvement, benefits to memory clinic team members, and impact of rural location. Whereas other team members assessed the patient, only FLC focused on caregivers, providing emotional and psychological support, connection to services, and symptom management. Face-to-face contact helped FLC establish a relationship with caregivers that facilitated future contacts. Team members were relieved knowing caregiver needs were addressed and learned about dementia subtypes and available services they could recommend to non-clinic clients with dementia. Although challenges of rural location included fewer available services and travel challenges in winter, the FLC role was even more important because it may be the only support available.ConclusionsFLC and team members identified perceived benefits of an embedded FLC for patients, caregivers, and themselves, many of which were linked to the FLC being in person.