Integrating primary care for depression management during transition in sickle cell disease: A pre–post feasibility study

To the Editor,

Sickle cell disease (SCD) is an inherited blood disorder caused by a genetic mutation that produces abnormal hemoglobin, forcing red blood cells into a rigid "sickle" shape and affects approximately 100 000 people in the United States, who are mostly from socially disadvantaged communities facing health inequities. ¹ The economic burden exceeds $3 billion annually, driven largely by acute care utilization. ² Depression rates in SCD are 20%–57%, consistently higher than in the general population. ³ Depression has been associated with pain, including acute vaso‐occlusive pain episodes ⁴ and acute healthcare utilization ³ , ⁵ in SCD. Depression is even more common among adolescents and young adults (AYAs) with SCD, affecting 45% of AYAs ⁶ versus 28% of adults. ⁷ Primary care providers (PCPs) are trained to manage depression and are often the front line for caring for this disease. ⁸ Unfortunately, the current primary care and subspeciality care model in SCD is fragmented, with PCPs not integrated into SCD clinics and teams. Since access to preventative subspeciality and primary healthcare remains a significant challenge facing AYAs with SCD, ⁹ an effective mental health management strategy is lacking.

To address these structural gaps, we implemented an integrated PCP model. Our integrated PCP model is defined as a PCP board‐certified in paediatrics and internal medicine who delivers primary care to AYAs, integrated and co‐located within the paediatric and adult haematology clinics and teams providing subspeciality SCD care. The integrated PCP provided essential primary care, including preventive care (e.g. immunizations, cancer screening, sexually transmitted infection prevention, contraception counselling), management of acute medical issues (e.g. musculoskeletal injuries) and chronic medical issues (e.g. hypertension, diabetes) during their SCD specialist visits and managed mental health care. The PCP participated in the SCD team's educational and quality improvement activities to remain knowledgeable and up to date on SCD care. Therefore, the integrated PCP delivered care in accordance with the premise of Wagner's Chronic Care Model: a prepared, proactive clinical practice team within the paediatric and adult SCD clinics that is integral to achieving an effective patient‐centred medical home. We hypothesized that this integrated model would be feasible, improves patient‐centred outcomes (depressive symptoms and self‐efficacy) and reduces acute healthcare utilization compared with the pre‐integration period.

We conducted a pre–post feasibility study of implementing an integrated PCP model within SCD clinics at two tertiary centres (The Ohio State University Wexner Medical Center and Nationwide Children's Hospital). Eligible participants were AYAs aged 16–26 years with any type of SCD (SCD types: Hemoglobin‐SS, Hemoglobin‐SC, Hemoglobin‐Sβ‐thal, etc.) and depressive symptoms (i.e. Patient Health Questionnaire‐9 (PHQ‐9) score ≥5) or a depression diagnosis in their problem list within their medical records, followed in participating SCD clinics where the integrated PCP was present from June 2023 to June 2025. Eligible AYAs were approached by research coordinators, and, if they agreed to see the integrated PCP, they were consented and recruited, completed an initial baseline visit with surveys, and had a visit with the integrated PCP. Participants subsequently completed a 6‐month follow‐up visit during which surveys were administered again. Participants could see the integrated PCP as needed during the intervention period. The institutional review board at the participating centres approved the protocol, and informed consent was obtained.

The feasibility outcomes included (1) the proportion of approached individuals that agreed to participate (recruitment rate); (2) the proportion of individuals that completed the study protocol (retention rate); and (3) the proportion of participants that had at least one visit with the integrated PCP within 6 months after enrolment (adherence to the integrated PCP model).

The patient‐reported outcomes were measured using the PHQ‐9 and the sickle cell disease self‐efficacy scale (SCSES). The PHQ‐9 is a validated tool for screening and monitoring depressive symptoms and has been widely used in SCD. ³ The PHQ‐9 is a nine‐item questionnaire scored 0–27, with scores ≥5, ≥10, ≥15 and ≥20, representing mild, moderate, moderately severe and severe depression respectively. The SCSES is a validated nine‐item scale developed to assess self‐efficacy. Responses for each question range from 1 to 5 (‘not at all sure’ to ‘very sure’). ¹⁰ Total self‐efficacy scores are calculated by summing responses. We reviewed the electronic health record (EHR) for acute healthcare utilization (emergency room visits, hospitalizations and day hospital visits) during the year following the initiation of integrated PCP compared with the year before the integrated PCP (standard care).

Descriptive statistics included medians and interquartile ranges (IQRs) for continuous variables and percentages for categorical variables. Paired t‐tests were used to assess before‐and‐after differences for patient‐reported outcomes PHQ‐9 and SCSES. Pearson's correlation coefficient was used to assess the association between the patient‐reported outcomes at baseline. Hospitalizations and acute healthcare utilization, compared between the post‐integration and pre‐integration years, were analysed using generalized linear Poisson regression with patient‐specific random effects to account for within‐patient correlation and patient‐by‐time point random effects to account for overdispersion.

A total of 30 individuals were approached, of whom 26 were recruited. Their mean age was 23.7 years (standard deviation: 1.82), 15 (58%) were female, 25 (96%) were Black or African American and 19 (73%) had haemoglobin SS/Sβ⁰ and 7 (27%) had haemoglobin SC/Sβ⁺.

Enrolment, retention and acceptability rates of the integrated PCP were high (Figure 1). One eligible person was not approached because they did not attend their clinic visit, and the study ended before they could be recruited. The recruitment rate was 87% (26/30), with four individuals declining to switch from their current PCP. Overall, 85% (22/26) of participants had at least two visits with the PCP, including the enrolment visit and at least one additional visit before the end of the 6‐month study period.

FIGURE 1.

Consolidated Standards of Reporting Trials (CONSORT) diagram. OSU, Ohio State University; PCP, primary care providers; PHQ‐9, Patient Health Questionnaire‐9; SCD, sickle cell disease.

Early results suggest that an integrated PCP can improve self‐efficacy and potentially decrease acute healthcare utilization. The mean change from baseline in total PHQ‐9 was −0.6 (95% CI, confidence interval: −2.7 to 1.6, p = 0.59) (Figure 2). The mean change from baseline in SCSES index was 3.1 (95% CI: 0.5–5.8, p = 0.022). PHQ‐9 and SCSES were negatively correlated at baseline (Pearson correlation −0.49, 95% CI: −0.74 to −0.13). The other outcomes did not have significant findings. The rate of all‐cause acute care utilization (i.e. emergency room visits, day hospital visits and hospitalizations) was lower but not statistically significantly different (relative rate 0.91, 95% CI 0.66–1.27). The rate of all‐cause hospitalizations was lower but not statistically significantly different (relative rate 0.72, 95% CI 0.48–1.1).

FIGURE 2.

Patient health questionnaire‐9 (PHQ‐9) and SCDSES scores at baseline and 6 months.

Eligible AYAs were willing to enroll in and adhere to a pre–post feasibility trial evaluating an integrated PCP model, supporting its acceptability for improving depression management and potential in reducing acute healthcare utilization. The study provides preliminary evidence that integrating a PCP within SCD clinics may enhance patient self‐efficacy and be associated with lower hospitalization rates and acute healthcare use. The high recruitment, retention and adherence observed in this first pre–post feasibility trial of an integrated PCP among AYAs with SCD underscore the model's promise and its potential to improve care delivery and reduce acute healthcare utilization. A larger, adequately powered trial is warranted to more definitively assess the effectiveness of this model on patient‐reported outcomes and healthcare utilization.

Our study showed lower acute care and hospitalization rates, although neither was statistically significant. Other studies have demonstrated lower acute healthcare utilization when adults with SCD are seen by a PCP. ¹¹ , ¹² However, those studies were retrospective and in adults; this is the first prospective study in AYAs to demonstrate a difference in acute healthcare utilization. These findings suggest that co‐located, team‐based primary care during transition can be implemented and may set conditions for improved patient outcomes.

After engaging with an integrated PCP, AYAs with SCD reported higher self‐efficacy. Although multiple interventions can improve self‐efficacy in chronic disease populations, these strategies are often delivered outside routine speciality care and rarely integrated into SCD clinics. ¹³ The observed association between self‐efficacy and depressive symptoms in our cohort is consistent with prior evidence demonstrating relationships between mood, coping capacity and perceived disease control in SCD and other chronic illnesses. ¹⁴ Integrated and team‐based primary care models grounded in the chronic care model emphasize proactive follow‐up, shared decision‐making and longitudinal relationships, all shown to strengthen patient self‐efficacy and engagement in disease management. ¹³ Our study supports the role of integrated primary care as a novel, scalable strategy for enhancing psychosocial outcomes among AYAs with SCD.

Our study has limitations. First, a pre–post design without randomization is subject to temporal and selection biases. Second, follow‐up may be insufficient to capture durable changes in depression or utilization. Third, our single‐region experience with a small sample size may limit power and generalizability. Future work could employ multicentre pragmatic designs, powered by patient‐reported outcomes, to inform effectiveness and sustainability.

An integrated PCP model in SCD clinics is feasible and promising for addressing depression and reducing acute care needs during transition. This model enables a shift from an ineffective model to one that (1) emphasizes treatments across all components of the biopsychosocial model, (2) meets the access and care needs of these vulnerable patients, (3) reduces healthcare utilization and (4) improves patient‐reported outcomes. Furthermore, delivering primary care from a continuous provider across paediatric and adult settings, the integrated PCP serves as a consistent clinical anchor during transfer, directly addressing transition‐specific risks. Larger, longer studies are warranted to test effects on depressive symptoms, quality of life, paediatric‐to‐adult transition, acute healthcare utilization and costs.

AUTHOR CONTRIBUTIONS

Robert M. Cronin: Conceptualization; investigation; funding acquisition; writing – original draft; methodology; validation; writing – review and editing; project administration; supervision; resources. Nives Quaye: Data curation; writing – review and editing; project administration. Kristina Landes: Writing – review and editing; data curation; project administration. Sherraine Della‐Moretta: Writing – review and editing; conceptualization. Roberta Azbell: Conceptualization; writing – review and editing. Regina D. Crawford: Conceptualization; writing – review and editing; resources. Chyongchiou J. Lin: Methodology; conceptualization; writing – review and editing. Patrick M. Schnell: Writing – original draft; conceptualization; methodology; formal analysis. Susan Creary: Conceptualization; funding acquisition; writing – review and editing; resources; project administration.

FUNDING INFORMATION

This research was partly funded by the Forma therapeutics.

CONFLICT OF INTEREST STATEMENT

The authors have no conflicts of interest to disclose.

ETHICS STATEMENT

The Institutional Review Board at the participating centres approved the protocol.

PATIENT CONSENT STATEMENT

Informed consent was obtained from all participants.

DATA AVAILABILITY STATEMENT

Data are available upon request.