Routine biopsychosocial screening of a patient with metastatic renal cell cancer at the Centro de Câncer de Brasília improved symptom management and shrunk costs for both the patient and her caregivers.
Oncology (Williston Park). 2022;36(9):552-556.
A 40-year-old unmarried Brazilian woman, Ms A, received a diagnosis of papillary renal cell carcinoma (RCC) in February 2020; she underwent nephrectomy the following month. In August, she began to experience generalized pain with subsequent scans revealing metastatic disease to the supraclavicular lymph node, liver, and vagina. In October 2020, Ms A started first-line systemic combination treatment with nivolumab (Opdivo; 3 mg/kg) plus ipilimumab (Yervoy; 1 mg/kg) every 3 weeks for 4 doses, followed by nivolumab (3 mg/kg) every 2 weeks, to be taken for 2 years. In April 2021, follow-up testing revealed a partial response to therapy, and a complete response was evident in August 2021.
Ms A was first screened for biopsychosocial distress by the supportive care team in October 2020, and she completed the Edmonton Symptom Assessment System (ESAS) evaluation.In the Centro de Câncer de Brasília where Ms A was treated, all patients are screened for biopsychosocial distress by the supportive care team before initiating treatment and at specific time points throughout treatment (Figure 1).2 At this time, the patient reported severe symptoms of anxiety, equating to an ESAS score of 7 (on a scale of 0 to 10, 10 indicating the worst possible severity). Upon further assessment, Ms A noted a lack of social support from family or friends. Support, psychoeducation, and cognitive behavioral therapy (CBT) were provided at this time, and she was told that further assessment would follow once she began immunotherapy treatment.1 In the Centro de Câncer de Brasília where Ms A was treated, all patients are screened for biopsychosocial distress by the supportive care team before initiating treatment and at specific time points throughout treatment et needs that are identified are discussed by the health care team (oncologist, nurse, psychologist, and nutritionist), with decisions made regarding the need for further assessments, treatment plan, or referrals.
The supportive care team recontacted Ms A during her second cycle of treatment in November 2020 and administered the same ESAS screening. Ms A reported moderate symptoms of anxiety (ESAS score, 6) and depression (ESAS score, 5) as well as generalized pain (ESAS score, 6) and high levels of tiredness (ESAS score, 7). The patient was offered counseling, but she chose not to engage at that time. In addition, her oncologist assessed her pain symptoms and prescribed codeine for pain relief.
A psychologist further assessed Ms A using the Patient-Reported Outcomes Measurement Information System (PROMIS) screening measures. Her PROMIS-Anxiety score was 25 of a possible 40 (T-score, 63.5) and her corresponding PROMIS-Depression score was 20 of a possible 40 (T-score, 57.9). The psychologist administered the Brief Fatigue Inventory as well, and Ms A’s score was 43 of a possible 90. The psychologist recommended that Ms A schedule an appointment with the counseling and support team.3,4
During her third treatment cycle in December 2020, Ms A was screened, and she reported levels of psychological impairment similar to those previously reported (Figure 2). The patient was once again offered counseling and was referred to a psychiatrist, but she declined both supportive care options. Ms A cited financial concerns and a lack of understanding as to why she had been referred to psychiatry.
During her fourth cycle of treatment in October 2020, the patient was assessed with the ESAS. During her medical visits, Ms A also expressed concern regarding her physical symptoms and admitted frequent self-monitoring for signs of recurrence or progression. As a result, she was assessed for clinically relevant fear of cancer recurrence or progression (FCR) using the Fear of Cancer Recurrence-7 (FCR-7).5 At this time, Ms A reported a high level of anxiety and severe FCR (Figure 2) as well as ongoing fatigue (ESAS score, 7) and pain (ESAS score, 6). Her oncologist prescribed tramadol for pain and the supportive care team recommended increased engagement in physical activity. Upon further assessment, the patient reported a belief that her psychosocial symptoms, worry about recurrence or progression, and time spent self-monitoring were a normal part of her cancer experience.
The past 2 decades have been marked by dramatic advances in the treatment of cancer, especially advanced RCC. In this era of targeted agents and immunotherapy, overall survival of patients diagnosed with RCC has improved significantly, with previously unheard-of instances of complete responses to treatment. For example, in the CheckMate 214 (NCT02231749) trial of nivolumab plus ipilimumab, nearly 1 in 10 patients with advanced disease achieved a complete response.6
While such cases of complete response represent a great achievement in the treatment of advanced RCC, they also present challenges to the oncology community. To date, there has been limited success in identifying consistent markers of treatment response and thus, such cases remain unpredictable. This unpredictability presents a challenge to clinicians who are tasked with communicating prognostic information to their patients: The clinicians would like to engender hope but also manage realistic expectations of what may follow such a response.7 In the RCC arena, patients’ growing awareness of cases of complete responses with immunotherapy have shifted their expectations of cure. Indeed, results of a recent study noted that a significant proportion of patients receiving immunotherapy harbor inaccurate expectations of cure, although, interestingly, a more accurate expectation of cure was associated with lower rates of anxiety.8 Undoubtedly, advances in treatment and reports of complete responses engender hope for patients, families, and the oncology community; however, the predictability of these outcomes remains uncertain. In the meantime, isolated examples of remission may paradoxically increase patients’ distress, prompt unrealistic expectations, and further exacerbate fears of cancer recurrence.9
Germane to the case presented in this paper, patients with RCC often experience physical symptoms, including pain and fatigue, that are secondary to their treatment. Pain and fatigue are the most frequent symptoms reported by patients with RCC (more than 70%).10 Importantly, fatigue is the most frequently reported treatment-related adverse effect of nivolumab plus ipilimumab. In the phase 3 CheckMate 214 trial, 93% and 46% of patients reported any-grade or grade 3/4 fatigue, respectively.6 Identifying these symptoms associated with a comprehensive overview of potential factors associated with them are relevant to better determine treatment strategies. Study results have shown that psychological intervention and exercise treatment are generally effective for reducing pain and fatigue.11,12 Psychosocial interventions—including counseling, CBT, psychoeducation, hypnosis, relaxation, and mindfulness—can also help manage these physical symptoms.12
Ms A also reported psychosocial symptoms during her cancer journey, including anxiety, FCR, lack of social support, and financial distress. Study results have shown that up to 77% of patients with a diagnosis of RCC report moderate-to-severe distress and 55% report moderate-to-severe FCR and that they are at moderate risk of suicide mortality, especially in the first year of being diagnosed with their disease.13-16 As a result, ongoing research efforts have explored factors associated with biopsychosocial distress and FCR, in order to help identify and support those at high risk and to guide targeted supportive care programs. Previous study outcomes have also shown that financial comorbidity, lack of social support, and physical symptoms, such as pain and fatigue, can exacerbate distress and psychosocial comorbidity.13,14,17 Demographic characteristics, including female gender and younger age, are also important risk factors for high levels of distress and FCR.14,15
Further, non–clear cell histology and presence of recurrence were associated with high levels of distress in patients with RCC.14 These findings may be explained by the lack of information and treatments to each histological subtype, or by the poorer prognosis associated with disease recurrence.14 Finally, an incomplete understanding of one’s disease and prognosis has been associated with higher rates of FCR; evidence suggests that these FCR rates do not dissipate over time, in contrast with levels of distress.15 Importantly, studies have shown that patients with untreated moderate-to-severe distress are more likely to use health care services—demanding more from their care team—and to visit emergency facilities.18,19
The cancer trajectory is marked by uncertainty and distress for patients, and efforts are underway to develop and implement effective symptom management and supportive care treatments. In the early 2000s, distress was deemed the sixth vital sign in care of patients with cancer, emphasizing its importance and the need for regular biopsychosocial screening.20 Screening for distress programs have become an international standard of comprehensive cancer care. Accreditation Canada, the Association of American Physicians and Surgeons, and many other professional groups have established guidelines for routine biopsychosocial screening for distress.21 As such, many cancer centers have developed and implemented a comprehensive approach in the care of patient throughout the cancer journey. Training programs have been developed, research has been undertaken, and comprehensive programs have been accredited, and the newest models of care often seek to maximize resources and reduce barriers to services as part of whole-patient cancer care. However, despite recognition of the value of these advances, many cancer care programs nonetheless fail to screen patients routinely for distress and symptom burden.
Biopsychosocial screening programs have promoted greater levels of interdisciplinary cooperation and have helped shift the concept of disease-directed care to patient-centered care, beginning from the time of diagnosis.22 Based on clinical guidelines, patients should receive biopsychosocial screening at several time points throughout the cancer journey, including at their first or second visit, during treatment, at the end of the treatment, and if their cancer status changes. Various screening questionnaires have been developed; some focus on the assessment of emotional symptoms (eg, anxiety and depression), while others are more comprehensive and assess multiple domains (ie, physical, emotional, practical, family/social). A biopsychosocial screening program should identify patients’ unmet needs; then, a focused assessment should follow to determine the severity of symptoms, make appropriate referrals, and create supportive care engagement for those in need.23-26 Research and health care system evaluations have shown that such programs are feasible and efficacious and help focus care resources.27-30 These programs also actively engage patients, family members, and health care team members throughout the cancer journey, ensuring commitment to whole-patient care.
Cancer care involves state-of-the-art biomedical treatments and, as a result, often focuses primarily on physical symptom monitoring (response option D to our question above). The system as it currently stands often fails to address the psychosocial needs of patients. Biopsychosocial screening programs (response option C) are considered the most effective form of screening for patients across the cancer trajectory.31 A biopsychosocial program has the ability to identify a variety of issues exacerbated by cancer, ranging from depression, anxiety, and constipation to lack of health literacy and financial difficulties that may cause additional suffering and reduce adherence to the treatment.31 Identifying these unmet needs can assist the cancer care team in specifically assessing the gravity of the problem and determining the most appropriate treatment strategy and/or referrals.31-33
Screening for distress programs can also help guide the development of psychoeducational programs and interventions that target specific symptoms or vulnerable groups.34 In contrast, clinically relevant psychosocial symptoms may be common but are not an expected response to treatment and thus should be treated accordingly (response option A). Previous study results have shown that only a small proportion of patients are inclined to ask for assistance; consequently, vague, open-ended questions can fail to capture patients’ symptoms, meaning health care professionals miss the chance to intervene (response option B). Notably, biopsychosocial screening programs can provide an excellent opportunity to integrate psychosocial care into routine oncology care, providing psychosocial support for patients during the cancer care trajectory, including survivorship.33 Although much research has been conducted and published on screening for biopsychosocial needs over the past 20 years, many cancer centers do not perform systematic screening or utilize this type of assessment. Regular follow-up and reassessments occur even less frequently.33
Once biopsychosocial needs are identified through screening programs, targeted, effective, and timely interventions—such as CBT, the standard of care for addressing emotional symptoms among those with a diagnosis of cancer—can be identified and provided.35,36 In addition, there is evidence that supportive-expressive group psychotherapy, existential therapy, meaning-centered psychotherapy, mindfulness, and mindfulness stress reduction programs can be effective in managing certain symptoms or in specific contexts.35,37-44 As evidence has emerged suggesting that FCR is highly prevalent and fails to dissipate in survivorship, targeted treatments have been developed to address this particular domain of distress.36,45,46
In compliance with emerging national and international comprehensive care guidelines in oncology, an evidence-based biopsychosocial screening program was implemented at the Centro de Câncer de Brasília in 2008 at no cost to patients.2 Evidence has clearly shown that this type of program improves symptom management and is cost saving to the patient and the system.18,47-49 This program includes routine biopsychosocial screening of patients’ well-being and enables the health care team to identify and respond more effectively to those with unmet needs. Ms A participated in this screening for distress program, and her specific psychosocial, practical, and physical concerns were identified and discussed among the health care team (oncologist, psychologist, nutritionist, nurse, and palliative physician), as well as with Ms A. She was reporting symptoms of anxiety, fear of cancer recurrence or progression, pain, and fatigue during treatment. Pain medication was prescribed, and she reported mild symptom improvement. The health care team referred her to individual psychotherapy, but Ms A refused counseling or a referral to a psychiatrist for several reasons, including financial issues, time commitment, and fear of losing her job if she took time to attend visits. In light of these barriers, the supportive care team offered the patient the opportunity to join a clinical trial for which she was eligible; it was examining the feasibility and effectiveness of an app-based mindfulness program for cancer patients and survivors.49 The smartphone application, called AmDTx and adapted from a mindfulness-based cancer recovery program, provides guided meditations focused on
6 modules: introduction to mindfulness, stress resilience and cancer, calmness/self-possession, habits of thought, sleeping through the night, and fear of recurrence at enhancing mindfulness (Figure 3).46 The patient agreed to participate, and over the study’s 4 weeks, her symptoms of anxiety and FCR began to decrease (Figure 2). She also reported improvement in her physical symptoms of pain and fatigue, and she was able to stop taking the pain medication. Ms A has continued to use the app-based mindfulness program, although the trial is long over. She is about to complete her treatment course (2 years of nivolumab plus ipilimumab, as described earlier), her emotional symptoms have improved, and she is not experiencing any physical symptoms. Indeed, Ms A is now working as a patient advocate and helps other patients in their own journeys.
In summary, screening for distress is proving to benefit both the cancer care system and individual patients by enlisting each patient to respond to a questionnaire that asks about the most commonly experienced concerns across the cancer care trajectory. While identifying each patient’s concerns is important, a timely response to those concerns by the appropriate professional is essential to improving outcomes and the patient’s quality of life.
Funding: Kure It Cancer Research: 2020 Barry Hoeven Memorial Kidney Cancer Research Grant (PI: C D Bergerot)
Cristiane D. Bergerot, PhDa; Paulo Gustavo Bergerot, MDa; Lorena Nascimento Manrique Molina, BSa; David Lee, BSb; Errol J. Philip, PhDc; and Barry D. Bultz, PhDd
aCentro de Câncer de Brasília, Instituto Unity de Ensino e Pesquisa, Brasilia, Distrito Federal, Brazil
bUniversity of New Mexico, Albuquerque, NM.
cSchool of Medicine, University of California San Francisco, San Francisco, CA.
dDivision of Psychosocial Oncology and Department of Psychiatry, Cumming School of Medicine, University of Calgary; Cancer Care Alberta – Alberta Health Services, Calgary, AB.
Cristiane Decat Bergerot, PhD
Centro de Câncer de Brasília, Instituto Unity de Ensino e Pesquisa
SMH/N Quadra 02, Ed de Clinicas, 12º andar
Brasília, DF, Brazil 70710-904