Redefining holistic care for gynecologic hereditary cancer syndromes through universal social work referrals

Highlights

• •Patients with gynecologic hereditary cancer syndromes face psychosocial challenges.
• •An integrated model with social work services may address unmet needs.
• •Implementation at a gynecologic oncology clinic showed high uptake (81%)
• •Patients request mental health support, care coordination, groups, and family testing.

Abstract

Purpose

Individuals with hereditary cancer syndromes often experience unique psychosocial challenges that may not be fully addressed in routine clinical care. Support with communicating genetic risk to family, coordinating complex medical care, and managing distress may enhance emotional well-being and improve engagement in recommended cancer prevention strategies. Incorporating social work services into gynecologic hereditary cancer care may address these unmet needs and promote a more comprehensive, patient-centered care model.

Methods

From April through September 2024, all patients with hereditary cancer syndromes followed at a gynecologic oncology clinic were offered referral to a genetics social worker. For patients who accepted, the social worker documented their primary areas of interest. Uptake of social work services was examined in relation to patient demographics and clinical characteristics.

Results

Among 124 patients offered referrals, 102 (82.3%) accepted. New patients to the gynecologic oncology clinic were significantly more likely to engage with social work services vs. established patients (91.2% vs. 74.6%, p = 0.02). No other variables were associated with interest in social work. Among those who engaged with the social worker, the most frequently requested domains of assistance included mental health resources (36.9%), support groups (35.4%), family testing (32.3%), and care coordination (30.8%).

Discussion

Integration of social work services into gynecologic hereditary cancer care resulted in high patient engagement. The strongest uptake was observed among new patients, underscoring the importance of providing early access to support. Overall, patients expressed substantial interest in mental health resources, support groups, family testing, and care-coordination assistance, highlighting critical areas for enhanced care delivery.

1. Introduction

Emerging evidence suggests that approximately 5% of the general population carries a pathogenic variant in a cancer-associated gene, placing individuals at substantially increased lifetime risk of developing malignancy (Idumah et al., 2025). In the gynecologic oncology population, hereditary breast and ovarian cancer and Lynch syndrome are significant contributors to cancer burden. For example, individuals with BRCA1 pathogenic variants have a lifetime breast cancer risk of 60–72% and a lifetime ovarian cancer risk of 39–58% (National Comprehensive Cancer Network (NCCN), 2026). Genetic testing to identify these syndromes, followed by coordinated multidisciplinary medical care, is essential to enable individuals at elevated risk to pursue cancer prevention and early detection strategies. A growing body of literature demonstrates that these interventions can significantly reduce cancer morbidity and mortality (Kurian et al., 2009). While cancer risk is actively mitigated, the psychosocial needs of individuals with hereditary cancer syndromes, such as anxiety, challenges in communicating genetic risk to family members, and difficulties navigating care, often remain insufficiently addressed within standard oncology practice.

Prior studies among individuals with cancer-associated pathogenic variants suggest that learning of a hereditary predisposition to cancer can lead to significant emotional strain, including anxiety, guilt, and a sense of disconnection or withdrawal (McInerney-Leo et al., 2005, Heijer et al., 2010, Sztankay et al., 2025). Patients may require support in coping with their own emotional responses and processing the complex relationship dynamics that emerge when communicating hereditary risk to family members. Additionally, patients may continue to have unanswered questions, with potential implications for medical adherence and uptake of cascade genetic testing (Peipins et al., 2024). Effective care coordination and timely access to trustworthy information may improve engagement in recommended cancer surveillance and risk-reducing interventions (Schneider et al., 2018, Mittendorf et al., 2021, Freund et al., 2014). Among individuals at elevated risk for ovarian and fallopian tube cancer, risk-reducing salpingo-oophorectomy is often recommended (NCCN, 2026). While critical for cancer prevention, this surgery has important implications for fertility, family planning, and self-identity, which may serve as barriers to uptake in the absence of adequate resources and support (Smith et al., 2021, Hickey et al., 2020). Overall, structured support with ongoing guidance may address psychosocial burden, while maximizing the benefits of cancer prevention strategies and improving outcomes.

In recognition of these needs, our gynecologic oncology clinic implemented a quality improvement (QI) initiative in which all individuals with a hereditary cancer syndrome presenting for care were offered referral to an integrated genetics social worker. Our goals were to assess patient uptake of social work services when offered universally and to identify the specific domains of support prioritized by patients, including family communication and cascade testing, care coordination, psychosocial counseling, support group resources, and other social work services.

2. Methods

2.1. Objective

This prospective QI initiative aimed to (1) evaluate the uptake of genetics-focused social work services among individuals with hereditary cancer syndromes within a gynecologic oncology clinic and (2) identify patient-requested areas of psychosocial support. Prospective implementation was determined to be institutional review board (IRB)-exempt as a QI initiative and retrospective review of patient characteristics was approved by the Weill Cornell Medicine IRB.

2.2. Conceptual framework and stakeholder engagement

Methods were guided by the Model for Improvement (MFI) framework and structured around iterative Plan–Do–Study–Act (PDSA) cycles used to optimize social work referral introduction, outreach modality, timing, and communication pathways (Ogrinc et al., 2019, Raymond and Dawda, 2016). Workflow adjustments were made based on patient responsiveness and stakeholder feedback during each phase of the project. Involved clinical staff including gynecologic oncology providers, genetic counselors, administrative staff, and the genetic social worker continuously assessed engagement, mapped the referral workflow, and standardized how social work services were introduced and communicated.

2.3. Selection of participants

Between April 2024 and September 2024, all patients diagnosed with a hereditary cancer syndrome and presenting for a gynecologic oncology appointment were offered a referral to on-site social work services, delivered by an integrated Licensed Master Social Worker (LMSW) with training in hereditary cancer care. This training included familiarity with clinical cancer genomics, hereditary cancer risk-reducing guidelines, cascade testing workflows, and patient-centered challenges of navigating cancer risk. The social worker was dedicated to working with patients with hereditary cancer syndromes and salary was supported through a private grant.

If interested in meeting with a social worker, patients were introduced to the social worker at the time of their appointment. When unable to meet during the appointment, the social worker initiated contact by telephone call or the electronic medical record. During this initial encounter and subsequent appointments, the social worker offered support in the following domains: (1) family cascade testing, (2) care coordination, (3) psychosocial support, (4) support group services, or (5) other social work resources. All contact with patients was documented in the medical record, along with the type of services they received or expressed interest in.

2.4. Outcomes

The primary outcome was uptake of social work services, defined as the patient’s interest in initiating contact with the social worker. Secondary outcomes included characterization of psychosocial needs, as reflected by patient-reported areas of interest or engagement across service domains. Relevant demographic and clinical information regarding patients was abstracted from the electronic medical record to determine if any characteristics were associated with social work uptake.

2.5. Analysis

Summary statistics for continuous variables included medians with interquartile ranges and means with standard deviations; categorical variables were quantified using frequencies and percentages. Comparisons between groups were performed using the Welch’s t-test and Fisher’s exact test, as appropriate, with significance evaluated at the 0.05 alpha level. Analyses were performed using R statistical software.

3. Results

3.1. Demographics

In total, 124 patients were offered social work services at the time of their appointment during the 6-month implementation period. Of these patients, 93 (75.0%) had a BRCA1 or BRCA2 pathogenic variant. Forty-six (37.1%) patients had a personal history of cancer and 25 (20.2%) patients had an active cancer diagnosis. Median patient age was 42.5 years (range 23–80) and 80 (64.5%) patients identified as White and not Hispanic/Latino. Seventy (56.5%) patients were of Ashkenazi Jewish descent (Table 1). All patients indicated English as their primary language.

Table 1.

Patient Demographics (N = 124).

Patient Characteristic	All Patients (N = 124)
Age at referral, years [Median (range)]	42.5 (23–80)
Race [N (%)]
White	80 (64.5%)
Black	1 (0.8%)
Asian	3 (2.4%)
Other (AI/AN, Hawaiian/Pacific Islander, or Other)	14 (11.3%)
Declined	26 (21.0%)
Ethnicity [N (%)]
Hispanic/Latino	6 (4.8%)
Not Hispanic/Latino	80 (64.5%)
Declined	36 (29.0%)
Unknown	2 (1.6%)
Ashkenazi Jewish Descent [N (%)]
Yes	70 (56.5%)
No	44 (35.5%)
Unknown	10 (8.1%)

3.2. Social work uptake

Overall, 102 (82.3%) patients accepted the social work referral. Pathogenic variants in BRCA1 or BRCA2 were identified in 79 (77.5%) patients accepting social work. Additional genes with pathogenic variants included APC, ATM, BRIP1, CHEK2, MSH2, MSH6, PMS2, and others. Forty (39.2%) patients in this group had a personal history of cancer, and 20 (19.6%) patients had an active cancer diagnosis (Table 2). A total of 76 (74.5%) patients reported a cancer diagnosis in a first-degree relative (Table 3).

Table 2.

Patient demographics by social work uptake.

Patient Characteristic	All Patients (N = 124)	Interested in Social Work (N = 102)	Not Interested in Social Work (N = 22)	P-value
Age at referral, years [Average (SD)]	46.2 (14.2)	46 (14.0)	55.5 (26.2)	0.11
Race [N (%)]				0.69
White	80	63 (78.8%)	17 (21.3%)
Black	1	1 (100.0%)	0 (0.0%)
Asian	3	3 (100.0%)	0 (0.0%)
Other (AI/AN, Hawaiian/Pacific Islander, or Other)	14	13 (92.9%)	1 (7.1%)
Declined	26	22 (84.6%)	4 (15.4%)
Ethnicity [N (%)]				0.89
Hispanic/Latino	6	5 (83.3%)	1 (16.7%)
Not Hispanic/Latino	80	64 (80.0%)	16 (20.0%)
Declined	36	31 (86.1%)	5 (13.9%)
Unknown	2	2 (100.0%)	0 (0.0%)
Ashkenazi Jewish Descent [N (%)]				0.18
Yes	70	59 (84.3%)	11 (15.7%)
No	44	37 (84.1%)	7 (15.9%)
Unknown	10	6 (60.0%)	4 (40.0%)

Table 3.

Hereditary cancer characteristics by social work uptake.

Patient Characteristic	All Patients (N = 124)	Interested in Social Work (N = 102)	Not Interested in Social Work (N = 22)	P-value
Time since Diagnosis, years [Average (SD)]	3.1 (3.8)	2.9 (3.4)	3.8 (5.1)	0.44
New Patient? [N (%)]				0.02
Yes	57	52 (91.2%)	5 (8.8%)
No	67	50 (74.6%)	17 (25.4%)
Pathogenic Variant [N (%)]				0.73
BRCA1	44*	37 (84.1%)	7 (15.9%)
BRCA2	50*	42 (84.0%)	8 (16.0%)
Other (Not BRCA1/2)	31	24 (77.4%)	7 (22.6%)
Personal Cancer History [N (%)]				0.34
Yes	46	40 (87.0%)	6 (13.0%)
No	78	62 (79.5%)	16 (20.5%)
Active Cancer History [N (%)]				0.20
Yes	25	20 (80.0%)	5 (20.0%)
No	21	20 (95.2%)	1 (4.8%)
Family Cancer History [N (%)]				0.32
Yes	122	101 (82.8%)	21 (17.2%)
No	2	1 (50.0%)	1 (50.0%)
1st-Degree Family Cancer History [N (%)]				0.78
Yes	93	76 (81.7%)	17 (18.3%)
No	29	25 (86.2%)	4 (13.8%)
Number of Family Members with Cancer [Average (SD)]	3.7 (2.1)	3.7 (2)	3.8 (2.3)	0.86

*One patient had BRCA1 and BRCA2 pathogenic variants and was included in both groups.

On univariate analysis, new patients were significantly more likely to express interest in social work services compared to established patients (52 (91.2%) vs. 50 (74.6%); p = 0.02). Other patient characteristics, such as age, race, ethnicity, Ashkenazi Jewish descent, pathogenic variant gene, time since genetic diagnosis, personal cancer history, active cancer diagnosis, and family cancer history, were not associated with social work interest.

3.3. Social work outreach and iterative development

During the initial planning phase, clinical staff provided patients with the social worker’s contact information at the time of their visit. Although patients expressed interest in social work services, this approach relied on patients to initiate follow-up independently, and no patients contacted the social worker after their gynecologic oncology appointment. Structural barriers likely contributed to this lack of follow-through. The social worker was not directly visible within the patient portal, limiting patient-initiated messaging, and patients were expected to retain contact information provided via business cards or visit documentation. Calls to the social work line were routed to voicemail, further limiting direct connection during a potentially overwhelming period of care.

The workflow was subsequently refined to support more proactive engagement. The clinical team incorporated a brief verbal introduction to genetic social work at point of care and offered same-day, in-person connection. For patients not seen in-person (either because the social worker was not present or the patient did not have sufficient time for an in-person meeting), the social worker initiated outreach via the electronic medical record portal or telephone. Because portal messages required timely patient response within a limited window, follow-up strategies incorporated message tracking, including identification of unread messages, to guide additional telephone outreach and establish connection. Following these workflow modifications, of the 102 patients who expressed interest in social work services, the social worker successfully made contact with 70 (68.6%) patients. The social worker met with 35 (34.3%) patients in-person, all of whom established contact, and conducted outreach to 67 (65.7%) patients via the patient portal or telephone, of whom 35 (52.2%) responded.

These processes were later formalized into a standardized referral workflow within the electronic health record. Providers and clinical staff followed a consistent verbal introductory script and patient interest was captured through referral placement and direct notification to the social work team. The social work team captured patients’ domains of interest, including mental health resources, care coordination, support group participation, and family testing assistance.

3.4. Patient-prioritized support domains

Among the 102 patients who expressed interest in social work services during screening, 70 (68.6%) were successfully engaged by the social worker. This included 100% of patients seen in person at the time of their visit (35) and 35 (52.2%) patients who responded to outreach via the electronic medical record portal or telephone. The remaining 32 (31.4%) patients did not engage following outreach attempts by the social worker.

Among the 70 patients who established contact, 56 (80.0%) reported an immediate need for support, 9 (12.9%) expressed interest in future support, and 5 (7.1%) declined services. Among the 65 patients with immediate or future support needs, 24 (36.9%) requested mental health support related to hereditary cancer risk, including brief supportive counseling and behavioral health interventions to address distress. Additionally, 23 (35.4%) expressed interest in support groups, 21 (32.3%) in family testing assistance, and 20 (30.8%) in care coordination, including appointment scheduling, follow-up tracking, and navigation of multi-specialty care. A smaller subset (6, 9.2%) requested additional services, including fertility planning, connection to external support programs, insurance or financial navigation, and assistance with access to appropriate providers.

4. Discussion

Our QI initiative suggests that patients with hereditary cancer syndromes in a gynecologic oncology clinic are interested in engaging with a social worker familiar with hereditary cancer syndromes. Patients who were new to the clinic were more likely to express interest in social work services than established patients, suggesting that psychosocial needs may be greatest at the initial appointment. Patients most frequently identified needs related to hereditary cancer risk in mental health support, care coordination, support group interest, and family testing. This QI initiative highlights areas where social work can address gaps in hereditary cancer care by providing specialized emotional support, practical guidance, and continuity alongside the clinical team.

Interventions addressing the psychosocial needs of patients with hereditary cancer syndromes have largely centered on group counseling, educational sessions, and peer support (Boghosian et al., 2021). While well-utilized by patients, these programs remain limited in their scope and alignment with the patient’s ongoing clinical care. Integrated behavioral health models in oncology have demonstrated improvements in patient quality of life with designated care members providing patient navigation, mental health service referrals, and connection to community resources (Miller et al., 2007, Fann et al., 2012). As patients with hereditary cancer syndromes often share similar psychological and social needs, embedding a social worker into hereditary cancer care may support a more patient-centered care model.

Although this model was supported by a dedicated genetic social worker, key components may be adaptable across settings based on available resources. These include standardized referral workflows, provider-led introduction, and proactive outreach to support patient connection with services. From an implementation perspective, active introduction during the clinical encounter, paired with outreach from the social worker, appeared to be an important strategy for translating patient interest into contact with the service. In-person contact at the time of the visit further facilitated connection, as all patients seen in-person established contact, whereas those requiring follow-up outreach were less consistently reached. Observed barriers to connection included challenges with accessing or responding to messages through the patient portal, difficulty establishing contact by telephone, and hesitation in initiating psychosocial support. The longitudinal nature of hereditary cancer care may also influence participation, as patients may seek support at different time points based on evolving needs, decision-making, and changes in clinical circumstances.

This initiative demonstrates early feasibility and clinical value, though it is limited by small sample size and lack of patient diversity. Further work is needed to establish proof of concept and evaluate the impact of specialized social work interventions in hereditary cancer care on measurable outcomes, including adherence, cascade testing, patient satisfaction, and psychosocial well-being.

CRediT authorship contribution statement

Pranya Gaddipati: Writing – original draft, Formal analysis, Data curation. Sonali Iyer: Writing – review & editing, Project administration, Data curation. Max Kirby: Writing – review & editing, Formal analysis. Isabelle R. Chandler: Writing – review & editing, Project administration. Michelle Primiano: Writing – review & editing, Project administration. Alex Raghunandan: Writing – review & editing, Project administration. Benjamin Grant: Writing – review & editing, Project administration. Tina Karimaghaie: Writing – review & editing, Project administration. Ravi N. Sharaf: Writing – review & editing, Supervision. Melissa K. Frey: Writing – review & editing, Supervision, Conceptualization. Emily S. Epstein: Writing – review & editing, Supervision, Project administration, Conceptualization.

Declaration of Competing Interest

The authors declare the following financial interests/personal relationships which may be considered as potential competing interests: Melissa K Frey reports financial support was provided by American Board of Obstetrics and Gynecology Inc. Ravi N Sharaf reports financial support was provided by National Cancer Institute. Ravi N Sharaf reports financial support was provided by Patient-Centered Outcomes Research Institute. Melissa K Frey reports a relationship with WndrHealth that includes: consulting or advisory. If there are other authors, they declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.