Multidisciplinary Support: Addressing Communication and Access Barriers to Enhance Patient Understanding

Initial Diagnosis

A 60-year-old male patient presents after imaging was completed on his right hip for arthritis and a mass posterior to his prostate was incidentally found. A biopsy was completed, and the patient was diagnosed with a gastrointestinal stromal tumor (GIST) that was DOG1 positive, CD117 negative, KIT exon 11 mutation positive. DOG1 is expressed in 65–100% of GISTs and considered to be the most specific marker for this tumor entity, while CD117-negative GISTs are a rare variant, occurring in about 5% of all GISTs.^1,2 A KIT exon 11 mutation is the most frequently found mutation in GISTs, occurring in approximately 60-70% of cases, and often associated with a better response to imatinib.³ The patient attended his initial consultation with an oncologist at a large academic medical center 2 hours from his home. He did not have any loved ones who were able to attend the appointment with him, and he mentioned that he lives alone. This patient only spoke Spanish, so an on-demand Spanish telehealth interpreter was provided through an iPad. Neoadjuvant first-line imatinib was recommended, and the oncologist went over associated side effects and important monitoring parameters.

After 2 weeks on imatinib, the patient was scheduled to be seen by his oncology team for a follow-up appointment to check labs and tolerance of the medication. The patient did not show up for his visit but called the oncology triage line the following day to report worsening diarrhea with episodes occurring up to 6 times daily. When asked why he did not come for his scheduled visit, the patient reported he was unable to afford gas to make the long drive to the hospital. He additionally admitted he had difficulty understanding the interpreter through the iPad at his initial visit and that he was unclear how to treat the diarrhea.

The oncologist subsequently sent referrals to both social work and the nurse navigating teams affiliated with the cancer center and briefed them on the patient’s case. The social worker was able to provide the patient with grant-funded gas cards to help pay for trips to the hospital. The nurse navigator was able to request and schedule an in-person interpreter to be available on the day and time of the patient’s next scheduled appointment.

After 2 months, the patient continued to tolerate the medication well with no further side effects. Diarrheal episodes were controlled with the use of as-needed loperamide, as well as diet changes. The nurse navigator ensured there were medication handouts for both loperamide and imatinib printed and available in Spanish for the patient to take home and use as reference. Re-staging scans found a slight decrease in the size of the GIST. The nurse navigator coordinated the patient’s next visit with his medical oncology team to occur on the same day as his consultation with the surgical team, as he prepares for the next phase of his care. The patient has expressed interest in recovering from surgery locally, so the social worker is collaborating with a nearby hotel to provide a discounted rate.

Discussion

Gaps in communication between provider and patient can happen often, even when there is not a language barrier.^4,5 Studies found that use of in-person interpreters in the outpatient care setting provides the most satisfaction to non-English speaking patients.^4,6 If in-person interpreters are not available, telehealth interpreters can be useful; it is important to have a reliable internet connection and the ability to provide closed captioning if necessary.⁶ The advance practice provider should be aware of the resources available to patients at their facility, and how to incorporate them into a patient’s plan of care. Additionally, various translations of oncology guidelines are provided through the National Comprehensive Cancer Network website. While the GIST guidelines are not currently available in Spanish, professional HIPAA-compliant Spanish interpreters can provide translation of guidelines, information sheets, and medication handouts.^5.6

There are several ways both nurse navigators and social workers can also provide assistance to the GIST patient. Social workers can find resources to help patients afford their treatment, as well as look for funds to assist patients in buying groceries and other necessities.⁷ They can guide patients in talking with their families and loved ones about their diagnosis. Nurse navigators can help to clarify symptoms patients may be experiencing and teach patients the right questions to ask their oncologist at a visit, with the overall goal of reducing patient anxiety and increasing understanding.^7,8 Both specialists are skilled at developing a relationship with not just the patient, but their loved ones, and acting as an advocate in their care.⁹

Another provider that may be beneficial to include in the GIST patient’s care team is a dietician or nutritionist. Some side effects related to medication taken for GIST may be managed by a change in diet. Reaching out and maintaining communication with the patient’s local primary care provider may also be valuable in monitoring for adverse effects related to treatment, as well as identifying early recurrence or metastasis. There are many things to consider in the management of the GIST patient; it is important to include psychosocial care among them. It is prudent for the advance practice provider to involve multiple members of the oncology team in a patient’s journey to provide consistent education and ensure the patient understands and feels confident in participating in their plan of care.

References

1. Jansen K, Farahi N, Büscheck F, et al. DOG1 expression is common in human tumors: A tissue microarray study on more than 15,000 tissue samples. Pathol Res Pract. 2021;228:153663. doi:10.1016/j.prp.2021.153663
2. Mensah S, Kyei I, Kokuro C, Afriyie C, Nortey M, Agyei E. C-kit-negative transmural gastrointestinal stromal tumor in the stomach: A rare case of upper GI bleeding in Ghana. Clin Case Rep. 2023;11(2):e6906. Published 2023 Feb 3. doi:10.1002/ccr3.6906
3. Oppelt PJ, Hirbe AC, Van Tine BA. Gastrointestinal stromal tumors (GISTs): point mutations matter in management, a review. J Gastrointest Oncol. 2017;8(3):466-473. doi:10.21037/jgo.2016.09.15
4. Heath M, Hvass AMF, Wejse CM. Interpreter services and effect on healthcare - a systematic review of the impact of different types of interpreters on patient outcome. J Migr Health. 2023;7:100162. Published 2023 Jan 24. doi:10.1016/j.jmh.2023.100162
5. NCCN Guidelines: Gastrointestinal stromal tumors. Version 2.2024; July 31, 2024
6. Nguyen NV, Guillen Lozoya AH, Caruso MA, et al. Through the eyes of Spanish-speaking patients, caregivers, and community leaders: a qualitative study on the in-patient hospital experience. Int J Equity Health. 2024;23(1):164. Published 2024 Aug 21. doi:10.1186/s12939-024-02246-9
7. Bires, J. Interview with Jennifer Bires, MSW, LCSW, OSW-C: The vital role of supportive care in GIST patient care. JADPRO: GIST Resource Center. April 29, 2025
8. Causey L, Leak Bryant A, Spencer Smith B, Coombs LA. incorporating nurse navigation to improve cancer survivorship care plan delivery. Clin J Oncol Nurs. 2025;29(2):E60-E69. doi:10.1188/25.CJON.E60-E69
9. McMullen L. Oncology nurse navigators and the continuum of cancer care. Semin Oncol Nurs. 2013;29(2):105-117. doi:10.1016/j.soncn.2013.02.005