The primary objective/reason for screening for psychosocial distress along the cancer continuum is to address patients’ perception of quality of life (QOL). Effective psychosocial care, consisting of a multidisciplinary team approach, has been shown to positively influence patient outcomes and QOL. The National Comprehensive Cancer Network (NCCN) Distress Thermometer has a secondary benefit of connecting many patients to services that might not otherwise have been identified. Potential benefits of distress screening are that it provides patients an opportunity to partner with their healthcare team, overcomes patients’ reluctance to ask for help, destigmatizes the issue and allows patients to share their vulnerabilities, and ensures timely referral to supportive services. Per the Commission on Cancer (CoC) Standard 3.2, licensed mental health professionals and certified chaplains experienced in psychosocial aspects of cancer should be readily available as staff members or by referral.
Common barriers to care include lack of social support, financial and insurance concerns, and problems with healthcare communication. Navigators can focus on resolving barriers to care, which can be assessed during interviews with patients, and gathering data on psychosocial, financial, and practical issues. Regular interaction with navigators allows periodic evaluation of the success of intervention to reduce barriers. Clinical health outcomes measurement should include assessment of the psychosocial domain (QOL and patient/family satisfaction) for the continuous evaluation of the navigation program and to address gaps in services provided.
SW is a 44-year-old divorced father with sole custody of 2 teenaged children. SW is self-employed as a landscaper to support his family. After a 2- to 3-week history of abdominal pain and rectal bleeding, he was sent for a colonoscopy. A complete colonoscopy could not be performed as SW was found to have a neoplastic mass of the rectum narrowing the lumen for advancement of the scope. An immediate oncology consultation was arranged. Upon meeting with the medical oncologist, SW was sent for a PET scan, which showed intensive uptake spanning 12 cm of the rectum and uptake within a perirectal lymph node.
Based on the PET scan results, SW discussed the treatment recommendations of neoadjuvant chemoradiation therapy with continuous infusion of 5-fluorouracil for 6 weeks, followed by surgical resection and concluding with adjuvant chemotherapy. SW met with the nurse navigator for chemotherapy and radiation therapy education, as well as for a psychosocial assessment utilizing the NCCN Distress Thermometer. The nurse navigator instructed SW on the role of the Distress Thermometer and encouraged its completion by marking areas of difficulty. SW scored an 8 on a scale of 0 to 10 on the Distress Thermometer. In the areas regarding practical problems, emotional problems, and physical problems, SW marked experiencing difficulty and distress. Based on SW’s self-reporting a score of 8 on the Distress Thermometer, he was referred to the oncology social worker by the nurse navigator and contacted within 48 hours.
SW met with the oncology social worker and the nurse navigator to address the areas of difficulty reported on the Distress Thermometer. In the area of practical problems, SW reported difficulty with insurance/financial issues. As a self-employed landscaper and sole provider for his family, SW lacked medical insurance coverage, and he expressed concern regarding his ability to pay medical bills related to his cancer treatment. The oncology social worker and nurse navigator referred SW to the facility’s financial counselor, state Medicaid outreach officer, and the local Social Security department. The nurse navigator also referred SW to the national financial assistance resources of Cancer Care and Chronic Disease Fund, and to pharmaceutical drug assistance programs for free drug/drug replacement programs.
On the Distress Thermometer, SW reported difficulty with emotional problems in regard to treatment decisions and feeling “sadness,” “fear,” and “worry.” In his discussion with the oncology social worker and the nurse navigator, SW expressed his concern about his disease and his treatment affecting his ability to care for his family and loss of “normal” life. SW was encouraged to participate in the cancer center’s Coping Skills program facilitated by the oncology social worker to help cancer patients develop skills to cope with the emotional and physical impact of cancer.
SW reported difficulty with “constipation/bowel movements,” “eating,” and “fatigue” under the physical problems portion of the Distress Thermometer. SW also expressed concern regarding possible side effects of his planned treatment, including neuropathy, diarrhea, and neutropenia, and the effect on his livelihood and QOL. The nurse navigator reviewed education of side effect management and referred SW to the oncology nurse practitioner for supportive care/symptom management and the facility’s dietitian for nutritional support.
With the use of the NCCN Distress Thermometer tool, the nurse navigator and oncology social worker were able to identify SW’s specific needs and address them accordingly. The nurse navigator and oncology social worker utilized a multidisciplinary approach to address SW’s specific needs. Utilization of the distress assessment tool can effectively guide and assist the nurse navigator in providing high-quality, holistic, and patient-centered care.
The open relationship between the patient and the navigator may make it easier for the patient to express his or her concerns. The navigator can assist their patients by 1) listening closely to the patient’s concerns, 2) showing interest in the patient’s experience with cancer, 3) asking who will provide support during cancer treatments, 4) asking how the patient is adjusting to the cancer and treatment plan, 5) encouraging patients to continue using coping strategies that are successful, and 6) suggesting additional coping strategies to address the patient’s concerns. Increasing evidence suggests that distress screening alone is not sufficient to improve patient outcomes. Another critical component is appropriate, timely, and personalized follow-up referrals. Navigators are instrumental in the development and implementation of a plan for psychosocial health services in their cancer program that supports patients (by providing personalized information, identifying strategies to address psychosocial needs, providing emotional support, helping patients manage their illness and health), links patients and families with psychosocial services, and coordinates psychosocial and biomedical care. Navigators can also educate patients and their families on how to use adaptive coping mechanisms, such as deep breathing, mindfulness, and other self-management exercises to decrease distress. Navigators can provide a comprehensive understanding of the patient to other members of the multidisciplinary team and take the lead role in assessing the patient’s needs for possible referral to a mental health specialist.
MetricsPatient Experience Metrics
- Patient Experience Survey – percentage of patients extremely satisfied with the patient experience related to navigation services
- Physician Experience Survey – number of physicians who received a physician experience survey related to navigation services and outcomes
- Chemotherapy/Radiation Therapy Patient Experience – number of patients who received a treatment educational packet from the navigator
- Tumor Conference Compliance with NCCN Guidelines – percentage of treatment plans that followed the NCCN guidelines and recommendations as discussed at the tumor conference
- Psychosocial Distress Screening – number of patients who received psychosocial distress screening (compliance with CoC Standard 3.2) at pivotal touchpoints/transitions and interventions; number of patients referred to mental health specialist based on psychosocial distress screening; number of patients who received an evidence-based QOL survey (FACT/City of Hope CSV-QOL) per month with outcomes
- Patient Pathway and Guideline Compliance – percentage of patients who were compliant with their treatment plan
- Monitor Time of Diagnosis to First Treatment Modality/Timeliness of Care – number of days from the time the patient is diagnosed until first consultation and treatment plan
- QOL – number of patients who received an evidence-based QOL survey (FACT/City of Hope CSV-QOL) at pivotal points throughout the continuum of care and measurement of interventions provided
- Immediate Referrals of Self-Pay Patients for Financial Assistance – number of self-pay patients referred by navigator for financial assessment/assistance for Medicaid, Medicare, Social Security
- Medication Coverage – number of patients eligible and assisted with pharmaceutical assistance programs (ie, copay cards and/or free drug program).
NCCN Distress Thermometer. www.nccn.org/patients/resources/life_with_cancer/pdf/nccn_distress_thermometer.pdf.