RESEARCH

In the United States, there are nearly 18 million cancer survivors, with the number estimated to grow to over 22 million by 2030. [1] In Texas, there are nearly 800,000 survivors. [2] Seventy percent of newly diagnosed cancer patients will live five years or longer, with nearly half of all survivors over the age of 70. [3, 4] As patients continue to live longer with a history of cancer, primary care physicians and practices need to be prepared to care for survivors and deliver multidisciplinary care. [3] A hallmark of primary care and family medicine is our ability to be comprehensive and address both mental and physical health needs. [5] Given that cancer survivors will most likely access health care within community primary care settings as they age, finding ways to efficiently screen and address needs is imperative.

Our team was particularly interested in deploying a psychosocial distress screening tool within our primary care cancer survivorship program at the University of Texas Southwestern Medical Center. In this program, patients with a history of cancer (at any stage of their cancer journey), can access primary care, and/or survivorship focused care. One frequently used validated tool for screening for needs and distress among adult cancer survivors is the National Comprehensive Cancer Network Distress Thermometer (DT) and Problem List. [6] This tool was also adapted for a younger population of adolescent and young adult cancer survivors into a tool called the AYA-SPOST [7] to ensure it addressed their unique needs. [8] With the funding provided by the TAFP Foundation, in November of 2022, we implemented age-appropriate screening. At the start of each medical visit, depending on the age of a patient at the time of the visit, patients aged 40 or older completed the NCCN Distress Thermometer and Checklist, and patients less than 39 years old completed the AYA-SPOST in our primary care cancer survivorship clinics in Dallas and Fort Worth, Texas.

Using screening tools that are sensitive to the population being served may support accurate identification of concerns. For example, AYA cancer survivors experience unique needs and higher rates of emotional distress compared to survivors above age 39 [8, 9] and the screening tool should reflect these needs. Given that AYA survivors tend to face more severe cancer diagnoses, take longer to be diagnosed, and experience higher rates of psychosocial distress than children [10] and older adults with cancer, [11, 12] it is crucial to use a more sensitive tool when screening for needs. To address their unmet needs, AYA survivors often seek health-related information via the internet [13] but report difficulty finding information specific to their concerns. [14] AYA survivors report feeling overwhelmed by the amount of information available online and are concerned about the questionable credibility of internet sources. [14] By screening at the time of the visit, providers are able to give this information in real time. We also found that point of care screening facilitates timely and meaningful patient-provider discussions and streamlines the medical visit. Every patient completed an online age-appropriate screener on a tablet, given by the medical assistant at the time of their visit, and asked at the end of the survey to prioritize their top three concerns. Results were immediately sent to the provider and the top concerns were addressed in the clinic visit. We recognize the potential apprehension of providers to incorporate the use of screening tools at each visit as providers may perceive they lengthen the time or focus of the visit. [15-17] Additionally, addressing every need within a medical visit is not only unrealistic for clinicians, but addressing all concerns is, interestingly, poorly received by patients. [18] Therefore, our team addended the age-appropriate tools we use in clinic, to prioritize a patient’s top three cancer-related concerns to prevent information overload. This allows clinicians to review and address the patient’s most pressing concerns during the visit, facilitates patient-provider communication and simultaneously helps alleviate clinician burden.

In summary, based on available evidence, medical teams should be encouraged to implement effective screening of distress and unmet needs with cancer survivors and respond accordingly, in a manner that can be accommodated by the typical workflow and resources available for referrals. Future research and implementation science could examine how routine point of care screening with prioritization of concerns can facilitate a medical visit that meets the needs of both the patient and the medical team and measures these as outcomes of success. In a recent study with cancer survivors , most survivors reported not being asked about needs by oncologists or primary care clinicians. [19] Given that primary care clinics in the community are where most cancer survivors access medical care, awareness of efficient and effective tools that could identify needs of patients otherwise not disclosed is needed.

Through funding provided by the TAFP Foundation, we have screened more than 400 patients to date using an age-appropriate distress tool, which has generated referrals such as psychotherapy, social work, exercise, and nutrition, and distress screening now a part of routine clinical care. Our team presented this work as a panel presentation at the Global Adolescent and Young Adult Cancer Survivorship Conference in Long Beach, California, June 2023, and will publish this work for local, national, and international circulation. We thank the TAFP Foundation for funding our work, and helping our team deliver care to Texans with a history of cancer.

1. American Cancer Society. Cancer Treatment & Survivorship Facts & Figures 2022-2024. American Cancer Society. Accessed October 27,2023, 2023. https://cancercontrol.cancer.gov/ocs/statistics#statistics-footnote1.
2. CPRIT. Texas Cancer Plan. Accessed September 25, 2020. https://www.cprit.state.tx.us/media/1457/tcp2018_web_09192018.pdf.
3. Nekhlyudov L, O'malley DM, Hudson SV. Integrating primary care providers in the care of cancer survivors: gaps in evidence and future opportunities. The Lancet Oncology. 2017;18(1):e30-e38.
4. Bluethmann SM, Mariotto AB, Rowland JH. Anticipating the “Silver Tsunami”: Prevalence trajectories and co-morbidity burden among older cancer survivors in the United States. Cancer Epidemiology, Biomarkers & Prevention. 2016;25(7):1029-1036.
5. Nekhlyudov L, Ganz PA, Arora NK, Rowland JH. Going beyond being lost in transition: a decade of progress in cancer survivorship. Journal of Clinical Oncology. 2017;35(18):1978.
6. NCCN. NCCN guidelines for patients - Distress during cancer care. Accessed October 27, 2023. https://www.nccn.org/patients/guidelines/content/PDF/distress-patient.pdf.
7. CSSN. Adolescent and Young Adult Oncology Psychosocial Survivorship Care Process. Youth Cancer Service SA/NT. Adelaide, Australia. 2012.
8. Patterson P, Allison KR, Bibby H, et al. The Australian Youth Cancer Service: developing and monitoring the activity of nationally coordinated adolescent and young adult cancer care. Cancers. 2021;13(11):2675.
9. Boakye EA, Polednik KM, Deshields TL, et al. Emotional distress among survivors of adolescent and young adult cancer or adult cancer. Annals of epidemiology. 2022;72:48-56.
10. Barrera M, Wayland L-A, D'Agostino NM, Gibson J, Weksberg R, Malkin D. Developmental differences in psychological adjustment and health-related quality of life in pediatric cancer patients. Children's Health Care. 2003;32(3):215-232.
11. Burgoyne MJ, Bingen K, Leuck J, Dasgupta M, Ryan P, Hoffmann RG. Cancer-related distress in young adults compared to middle-aged and senior adults. Journal of Adolescent and Young Adult Oncology. 2015;4(2):56-63.
12. Baird H, Patterson P, Medlow S, Allison KR. Understanding and improving survivorship care for adolescents and young adults with cancer. Journal of adolescent and young adult oncology. 2019;8(5):581-586.
13. Elsbernd A, Crenner C, Rosell T, Panicker J. Individual experiences and utilization of supportive resources in adolescents and young adults with cancer. Journal of adolescent and young adult oncology. 2019;8(3):329-334.
14. Mooney R, Samhouri M, Holton A, Devine KA, Kirchhoff AC, Wright J, Wu YP. Adolescent and young adult cancer survivors' perspectives on their internet use for seeking information on healthy eating and exercise. Journal of adolescent and young adult oncology. 2017;6(2):367-371.
15. Lo SB, Ianniello L, Sharma M, Sarnacki D, Finn KT. Experience implementing distress screening using the National Comprehensive Cancer Network distress thermometer at an urban safety‐net hospital. Psycho‐Oncology. 2016;25(9):1113-1115.
16. O’Connor M. Detecting distress: introducing routine screening in a gynecologic cancer setting. Number 1/February 2017. 2017;21(1):79-85.
17. Tavernier SS, Beck SL, Dudley WN. Diffusion of a distress management guideline into practice. Psycho‐Oncology. 2013;22(10):2332-2338.
18. Markwardt HS, Taghavi SE, Williams AP, Olivares MN, McDuffee PR, Al Achkar M, Hall BC. The AYA care plan: Initial evaluation of a web-based psychosocial intervention. JCO Clinical Cancer Informatics. 2022;6:e2200086.
19. National Coalition for Cancer Survivorship 2023. https://canceradvocacy.org/2022-state-of-cancer-survivorship-survey/.