Increasing Access to Psychosocial Care for Adolescents and Young Adults with Cancer by Integrating Targeted Navigation Services

Introduction

Nearly 90,000 adolescents and young adults (AYA) ages 15–39 are diagnosed with cancer annually in the United States.¹ AYAs face unique psychosocial challenges related to being diagnosed with cancer at a time of great socio-developmental transition.^2–5 In recognition of this, the National Comprehensive Cancer Network (NCCN) released Clinical Practice Guidelines in Oncology specifically for AYAs in 2012,⁶ which recommend that all AYAs with cancer undergo a comprehensive biopsychosocial assessment at diagnosis. Such assessments are related to increased quality of life, decreased symptom burden, improved continuity of care, enhanced communication, and decreased mortality.⁷ Oncology social workers, the primary providers of cancer-related psychosocial services, often complete these assessments.⁸ Unfortunately, many medical centers are under-resourced to meet this NCCN recommendation. Patient navigation is increasingly being used to improve access to psychosocial care for AYAs.⁹ As part of ongoing AYA Cancer Program development, the Robert H. Lurie Comprehensive Cancer Center (RHLCCC) of Northwestern University, a large, urban, adult-focused cancer center, recently integrated an AYA-specific clinical navigator into oncologic care. Among other responsibilities, the AYA navigator proactively identifies newly diagnosed AYAs and completes an initial biopsychosocial assessment. Depending on the results of this assessment, the navigator may check in with the AYA on occasion during and following anti-cancer treatment, provide regular follow-up psychosocial care (e.g., counseling), or refer the AYA for services from another provider (e.g., dietician, psychologist, social worker). Non-English speaking AYAs can meet with the navigator with support from a medical interpreter. To better understand the impact of integrating AYA-specific navigation, we evaluated 1) AYA access to psychosocial care, 2) burden on the social work service, and 3) implied biopsychosocial assessment completion before and after the integration of navigation services.

Methods

As part of a quality improvement initiative, we conducted a retrospective electronic medical record (EMR) review for AYAs seen at RHLCCC during the ten months prior to (T1) and following (T2) navigator integration. We identified total social work encounters during this timeframe as a proxy for AYA access to psychosocial care and burden on the social work service. At RHLCCC, all encounters with the AYA navigator and with oncology social workers are categorized as social work encounters, as the navigator is a licensed clinical social worker. Additionally, outpatient office visit encounters were identified as a proxy for biopsychosocial assessment completion, as these assessments are exclusively completed during office visits. Importantly, at the time of analysis the navigator was only seeing AYAs aged 15–30 with sarcoma, brain, or blood cancers. Thus, EMR review was restricted to AYAs who met these criteria. Variables extracted from the EMR included: 1) the number of navigation-eligible AYAs seen at RHLCCC, 2) the number and type (i.e., office visit, inpatient/hospital, documentation only, telephone, patient message, infusion, other) of social work encounters, both per patient and of the total number of encounters, and 3) the number and type of encounters with the AYA navigator, both per patient and of the total number of encounters (post-integration only). Each type of extracted encounter is categorized differently in the EMR, thus enabling us to distinguish encounter types in analyses, and encounters were classified as having occurred with the AYA navigator or an oncology social worker by identifying the name of the provider who completed the encounter. All oncology social worker encounters were grouped for analysis. We used descriptive statistics, t-tests, and χ² tests to compare the frequency and nature of social work encounters before and after integration of AYA navigation.

Results

Of those eligible for navigation, 280 unique AYAs were seen at T1 and 298 were seen at T2. Table 1 shows sample characteristics and Supplemental Table 1 summarizes key study results. There were no statistically significant differences in sample characteristics between T1 and T2.

Table 1.

Sample characteristics

Variable	Pre-Integration	Post-Integration	Statistic
Age			χ2=1.88, p = 0.37
15–19 years	15 (5%)	20 (7%)
20–24 years	72 (26%)	89 (30%)
25–30 years	193 (69%)	189 (63%)
Sex			χ2=0.02, p = 0.88
Male	142 (51%)	153 (51%)
Female	138 (49%)	145 (49%)
Relationship status			χ2=2.30, p = 0.32
Married	51 (18%)	47 (16%)
Single	216 (77%)	229 (77%)
Other or unknown	13 (5%)	22 (7%)
Race			χ2=3.98, p = 0.41
White	204 (73%)	218 (73%)
Black/African American	27 (10%)	18 (6%)
Asian	11 (4%)	15 (5%)
Other	20 (7%)	29 (10%)
Declined	18 (6%)	18 (6%)
Ethnicity			χ2=0.10, p = 0.95
Hispanic/Latinx	35 (12%)	35 (12%)
Not Hispanic/Latinx	229 (82%)	245 (82%)
Declined	16 (6%)	18 (6%)
Language			χ2=0.29, p = 0.87
English	269 (96%)	288 (96%)
Spanish	8 (3%)	8 (3%)
Other	3 (1%)	2 (1%)
Primary cancer diagnosis			χ2=0.13, p = 0.99
Brain/central nervous system	73 (26%)	79 (26%)
Sarcoma	48 (17%)	51 (17%)
Leukemia	53 (19%)	59 (20%)
Lymphoma	106 (38%)	109 (37%)

Access to psychosocial care.

A larger proportion of navigation-eligible AYAs had any social work encounter at T2 (47%, n=139) compared to T1 (33%, n=93; χ²(1)=10.8, p<0.001). Additionally, the average number of social work encounters per patient increased from T1 to T2 (mean[M]=2.6, standard deviation[SD]=6.6 vs. M=4.4, SD=8.3, t(576)=2.82, p=0.005).

When considering just office visits per patient, 59 AYAs had an encounter with an oncology social worker at T1. This decreased to 50 AYAs at T2. However, an additional 23 were served by the navigator at T2, reaching a total of 73 AYAs and demonstrating increased access to care.

Additionally, of all encounters at T1, 10% (n=76) were office visits and 61% (n=444) were inpatient/hospital encounters, which largely consist of discharge planning and acute case management. At T2, the percentage of encounters that were office visits increased to 25% (n=328) while only 38% (n=496) were inpatient/hospital.

Implied completion of biopsychosocial assessments.

Of those who had at least one social work encounter, a larger proportion had at least one office visit at T2 (64%, n=89) compared to T1 (46%, n=43; χ²(3)=25.5, p<0.001). Of the 89 AYAs with at least one office visit at T2, three-quarters (75%, n=67) had a visit with the AYA navigator, who was specifically tasked with completing biopsychosocial assessments at each AYA’s initial office visit. The navigator was the only social worker with whom 51 of these 67 AYAs (76%) had an office visit.

Burden on the social work service.

The AYA navigator documented 571 total encounters at T2. Comparatively, the three outpatient oncology social workers who saw navigation-eligible AYAs documented a combined total of 155 encounters at T1 and 186 at T2. When considering just office visits, the AYA navigator had 259 office visits at T2 while the three outpatient oncology social workers who saw navigation-eligible AYAs had a combined total of 57 office visits at T1 and 48 at T2.

Discussion

We conducted a retrospective EMR review to evaluate the impact of integrating an AYA-specific clinical navigator into oncologic services. We observed significant increases in the proportion of AYAs who received psychosocial services, the number of encounters per patient, the number of patients completing office visits, and the proportion of encounters that were office visits as opposed to inpatient/hospital encounters. Thus, integrating an AYA navigator appears to have increased patient access to psychosocial care, consistent with other recent work exploring resource-limited settings.¹⁰

Oncology social workers provide expertise addressing the variable presentations typically observed in a large, urban, comprehensive cancer center where the ratio of patient to providers is quite large. This includes, but is not limited to, broad services such as discharge planning and case management, serving adults of all ages. Conversely, the AYA navigator is specifically trained to provide focused, comprehensive assessment, psychosocial care, and triage tailored to meet the unique needs of AYAs. Thus, it stands to reason that integrating navigation not only increased access to psychosocial care, but also depth of psychosocial care by proactively providing these specialized services.

The observed increase in the number of AYAs completing office visits implied increased completion of biopsychosocial assessments. Importantly, this increase was not proportional to the typical per-provider load for the outpatient oncology social workers. Thus, this was likely not a reflection of having added another provider, but rather of the targeted effects of AYA navigation. In addition to improved adherence to national guidelines, such an increase in biopsychosocial assessment suggests that a larger proportion of AYAs experiencing elevated distress and other symptoms (e.g., depression, anxiety, pain, cognitive impairment) can be identified and referred for treatment expeditiously. This in turn could improve self-management of cancer-related symptoms and treatment side effects, as well as promote adherence to medical recommendations. Future work would benefit from directly evaluating completion of biopsychosocial assessments, identifying referrals for supportive care, and measuring patient-reported symptom monitoring outcomes following integration of AYA navigation.

Importantly, integration of AYA navigation facilitated improved access to and depth of care for patients without increasing burden on the oncology social work service. There was a more than three-fold increase in overall encounters and a four-fold increase in outpatient office visits following integration; however, the encounters and office visits completed by oncology social workers remained relatively stable. Given that AYA navigation is intended to augment, not replace, services provided by oncology social workers, this stability is not surprising. Moreover, in addition to the aforementioned responsibilities, the AYA navigator provides a range of AYA-targeted services including leading multiple support group and orchestrating peer meet ups and AYA-specific events. Thus, the AYA Cancer Program increased its reach and breadth of services provided without increasing burden on the oncology social work service.

Generalizability of results may be limited by the urban nature of the cancer center where this work was conducted. Nonetheless, these data demonstrate that integrating an AYA-specific clinical navigator led to increased access to and depth of psychosocial care, and likely improved adherence to NCCN biopsychosocial assessment guidelines, without increasing burden on the oncology social work service. Although AYA navigation at RHLCCC is currently provided by a social worker, this role could be fulfilled by another allied health professional with appropriate psychosocial training (e.g., psychologist, nurse). Next steps for our program are to expand navigation eligibility to patients up to age 39 and with a broader range of cancer diagnoses, and to pursue support for additional dedicated AYA cancer program clinical staff. Future work would benefit from a health economic evaluation of the cost of integrating an AYA-specific navigator relative to the benefits observed for clinical care. Our hope is that this work will continue to improve access to psychosocial care for the underrepresented, underserved, and growing population of AYAs with cancer.

Key Points.

• This study assessed the impact of integrating AYA-specific clinical navigation at a large, urban, adult-focused cancer center.

• Information about social work encounters was extracted from electronic medical records for the ten months prior to and following integration of an AYA navigator.

• Compared to pre-integration, the number and proportion of overall and office visit encounters increased post-integration.

• The AYA Cancer Program increased its reach without increasing burden on oncology social work services.

• Results suggest that integrating an AYA-specific clinical navigator led to increased access to psychosocial care, and likely improved adherence to NCCN biopsychosocial assessment guidelines, without increasing the burden on oncology social work services.