Anxiety, Depression, and Coping Strategies during Chemotherapy Treatment: A Comparison of Older and Younger Adults with Advanced Cancer in Brazil.

We sought to examine differences in anxiety, depression and coping strategies among younger (<64-year old) and older (≥65-year old) patients. Patients were assessed at baseline (T1), mid-point (T2) and on the last day of treatment (T3) using the Hospital Anxiety and Depression Scale and the Ways of Coping. A linear mixed modeling approach was used. The study included 200 patients (gender: 70% women; diagnosis: 30% breast, 22% hematological, 18% gastrointestinal; disease stage: 60% advanced). Older patients who used an emotion-focused coping strategy had a greater decrease in anxiety at T3 compared to those that used problem-focused coping (p = .002).

Racial and ethnic differences in perceptions of germline or somatic DNA sequencing among patients with advanced prostate, urothelial, or kidney cancer.

We sought to determine racial and ethnic differences in perceptions (quality of communication, expectations, and concerns) of germline or somatic DNA sequencing (genomic profiling). Patients with prostate, urothelial, or kidney cancer were surveyed using a questionnaire that assessed previous experience, beliefs, expectations, and concerns regarding genomic profiling. Descriptive statistics and chi-square tests were used to identify factors associated with patients' perceptions of genomic profiling. A total of 150 consecutive patients were enrolled. The majority were male (74%) with a mean age of 68 years old. Most patients underwent somatic testing (54%), 24% undertook germline testing, and 21% undertook both tests. Significant differences were found across racial and/or ethnicity concerning factors that could have influenced patients' decision to pursue genomic profiling, including ability to guide the type of treatment (White: 54.1% vs. other ethnic groups: 43.9%, p = 0.04) and potential to improve treatment response (White: 10.1% vs. other ethnic groups: 22.0%, p = 0.04). Other ethnic group of patients were more concerned about learning that the cancer was less treatable or aggressive (43.8% vs. 27.7%, p = 0.01) and anxious about what would be learnt from genomic profiling (34.4% vs. 21.3, p = 0.01) as compared to White patients. Our findings reinforce the importance of developing culturally tailored education to help patients participate actively in decisions about genomic profiling.

Implementation and evaluation of a remote geriatric assessment and intervention program in Brazil.

BACKGROUND: This study sought to determine the feasibility and acceptability of a remote geriatric assessment (GA) and implementation (GAIN) program in Brazil. The authors also explored the effect of this program on health-related quality of life (HR-QOL) outcomes 3 months after initiating treatment. METHODS: This is a longitudinal study enrolling older adults (65+ years), diagnosed with any type of solid tumor, scheduled to initiate chemotherapy in a networked Brazilian cancer center. The GA was performed through telehealth. We assessed the feasibility of the remote GA, acceptability to patients, and changes in patient-centered outcomes (HR-QOL, mood, function) from baseline to month 3. Linear mixed model analysis was done, adjusting for age, gender, race, income, and disease stage. RESULTS: Fifty-six patients completed all intended assessments. Notably, the threshold of feasibility was 70% and there was 92% complete adherence. Average age was 76 years old (SD = 7.2). Most patients were female (57%), married (59%), and had a college degree (46%). The most common diagnoses were gastrointestinal (39%) and gynecological cancers (18%); most were diagnosed at an advance disease stage (77%). A total of 32 patients were referred to a remote appointment and 86% followed this recommendation(s). Significant improvement in Functional Assessment of Cancer Therapy - General FACT-G (mean difference, 6.04; p < .001), Geriatric Depression Scale (mean difference, -0.86; p = .008), and instrumental activities of daily living ratio (mean difference, 0.17; p < .001) were found. CONCLUSION: Remote GAIN is feasible and acceptable to older adults with cancer receiving treatment in Brazil. The authors also found significant improvement in HR-QOL outcomes over time. Notably, this GAIN program could guide early detection of chemotherapy toxicity and improving patient-reported outcomes in low-resource environments.

Impact of a Biopsychosocial Screening Program on Clinical and Hospital-Based Outcomes in Cancer.

BACKGROUND: The integration of a biopsychosocial screening (BPS) program has been proposed by international agencies to better identify and effectively manage unmet needs among patients with cancer. We sought to evaluate the effect of a BPS program on hospital admissions and length of stay (LOS) among a diverse sample of patients with cancer and receiving treatment in Brazil. METHODS: A retrospective analysis was performed from March 2020 to December 2021. Eligible patients were diagnosed with cancer and were receiving treatment at a private practice in Brazil. Clinical characteristics, participation in the BPS program, hospital admissions, reason, and LOS in hospital were evaluated. We compared the number of hospital admissions and LOS between groups (participation v no participation). T test and Chi-square test were used to test for differences between groups. RESULTS: A total of 1,014 patients were included in the analysis. Baseline clinical characteristics were well balanced between groups (n = 459 patients who participated and n = 555 patients who did not). The median age of patients was 63 years. Breast and hematological cancers were the most common types of cancer; 60% were diagnosed at an advanced disease stage. A smaller proportion of patients who participated in the BPS program were hospitalized compared with patients who did not participate (8% v 32%, P = .001). Patients who participated in the program also spent less days in the hospital compared with patients who did not participate in the program (M = 4.2 days v 9.8 days, P = .001). CONCLUSION: Engagement in a BPS program was associated with reduced hospital admissions and LOS. This study provides novel insight into the potential broader implications of BPS programs for clinical care systems. Future studies are needed to explore the mechanisms behind such associations.

Fear of cancer recurrence among Brazilian patients with cancer: Translation and cultural adaptation of FCR4/7 and FCRI-SF measures.

OBJECTIVE: Fear of cancer recurrence or progression (FCR) is considered one of the most common unmet needs among patients with cancer. This study sought to translate and evaluate the psychometric properties of the Fear of Cancer Recurrence scale (FCR4/7) and Fear of Cancer Recurrence Inventory-Short Form (FCRI-SF). METHODS: This study involved three phases: (1) translation and cultural adaptation of the FCR4/7 and FCRI-SF measures, (2) validity and reliability testing of the Portuguese version of these measures, and (3) examining patient's perceptions of these measures. Eligible patients were diagnosed with localized breast cancer, and patients with metastatic cancer. Descriptive analyses were collated, and psychometric analysis were conducted (confirmatory factor analysis). RESULTS: A total of 200 patients were recruited (100 patients with localized and 100 patients with metastatic cancer). A significant proportion of patients reported moderate to severe FCR (FCR7: 32.0% and FCRI-SF: 43.0%). Female gender, younger age and metastatic cancer were associated with higher levels of FCR. Psychometric analyses suggested that the Portuguese versions of the FCR4/7 and FCRI-SF were valid, unidimensional in nature, with acceptable reliability coefficients across all scales. In a sub-sample qualitative analysis (n = 75), most patients were satisfied with the relevance of both measures. CONCLUSION: Our findings suggest the Portuguese versions of the FCR4/7 and FCRI-SF are valid tools to assess FCR among patients with localized and metastatic cancer. Future research can now extend our understanding of FCR and assess this construct among Portuguese speaking patients, to guide the development of effective and targeted interventions for patients globally.

Psycho-Oncology and the Relevance of a Biopsychosocial Screening Program.

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.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. 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.

Fear of Cancer Recurrence or Progression: What Is It and What Can We Do About It?

Patients with cancer face a trajectory marked by emotional and physical distress that can be associated with both diagnosis and treatment. Fear of cancer recurrence or progression has been considered one of the most common unmet needs reported by patients diagnosed with both localized and metastatic disease. Fear of cancer recurrence or progression has been defined as the "fear, worry, or concern relating to the possibility that cancer will come back or progress." Often overlooked by health care teams, fear of cancer recurrence or progression has been associated with impaired quality of life and psychosocial adjustment, elevated emotional distress, and a range of physical symptoms. Several interventions for fear of cancer recurrence or progression are currently under investigation. Early recognition, support, and validation of feelings associated with fear of cancer recurrence or progression, and appropriate referrals to psychosocial oncology, can be beneficial for many patients. Assessing patients early in their cancer trajectory, and at important milestones, including a change in therapies, at the end of active treatment, and during follow-up visits, can help identify individuals at risk and help individuals engage in supportive programs.

HOLA COVID-19 Study: Evaluating the Impact of Caring for Patients With COVID-19 on Cancer Care Delivery in Latin America.

PURPOSE: The HOLA COVID-19 study sought to evaluate the impact of COVID-19 on oncology practices across Latin America (LATAM), challenges faced by physicians, and how practices and physicians adapted while delivering care to patients with cancer. METHODS: This international cross-sectional study of oncology physicians in LATAM included a 43-item anonymous online survey to evaluate changes and adaptations to clinical practice. Multivariable logistic regression analyses were used to evaluate the association of caring for patients with COVID-19 and changes to clinical practice. RESULTS: A total of 704 oncology physicians from 19 countries completed the survey. Among respondents, the most common specialty was general oncology (34%) and 56% of physicians had cared for patients with COVID-19. The majority of physicians (70%) noted a decrease in the number of new patients evaluated during the COVID-19 pandemic when compared with prepandemic, and 73% reported adopting the use of telemedicine in their practice. More than half (58%) of physicians reported making changes to the treatments that they offered to patients with cancer. In adjusted models, physicians who had cared for patients with COVID-19 had higher odds of changing the type of chemotherapy or treatments that they offered (adjusted odds ratio 1.81; 95% CI, 1.30 to 2.53) and of delaying chemotherapy start (adjusted odds ratio 2.05; 95% CI, 1.49 to 2.81). Physicians identified significant delays in access to radiation and surgical services, diagnostic tests, and supportive care. CONCLUSION: The COVID-19 pandemic has significantly disrupted global cancer care. Although changes to health care delivery are a necessary response to this global crisis, our study highlights the significant disruption and changes to the treatment plans of patients with cancer in LATAM resulting from the COVID-19 health care crisis.

Discrepancies between genitourinary cancer patients' and clinicians' characterization of the Eastern Cooperative Oncology Group performance status.

BACKGROUND: Patient-reported outcomes have been used to assess treatment effectiveness and actively engage patients in their disease management. This study was designed to describe the patient-reported performance status (PS) and the provider-reported PS. METHODS: Patients with metastatic genitourinary cancers were recruited from a single cancer center before the initiation of a new line of treatment. PS (Eastern Cooperative Oncology Group [ECOG]), quality of life (Functional Assessment of Chronic Illness Therapy-General), and distress (Patient-Reported Outcomes Measurement Information System Anxiety and Depression) were self-reported by patients. Clinical data (eg, age, sex, diagnosis, and physician-reported ECOG PS) were extracted from medical records. Multivariate analysis was used to determine the association between PS, quality of life, and psychological symptoms. RESULTS: One hundred forty-five patients were enrolled (76.6% male, 70.3% White, 81.4% married, and 76.6% well educated). The median age was 67 years; 66.9% were diagnosed with renal cell carcinoma, 20.0% were diagnosed with urothelial carcinoma, and 13.1% were diagnosed with prostate cancer. Clinicians more frequently classified patients' ECOG PS as 0 in comparison with the patients themselves (92.4% vs 64.1%; P = .001). Higher clinician-reported ECOG PS was associated with poorer physical and functional well-being and higher rates of depression (P < .01), whereas higher patient-reported ECOG PS was associated with worse psychosocial outcomes (P < .01). CONCLUSIONS: Discrepancies were noted between the patient- and provider-reported ECOG PS, with clinicians overestimating the ECOG PS in comparison with the patients themselves. This study's findings suggest that patients incorporate their social and emotional well-being into their PS score in addition to their physical well-being. This information is not immediately accessible to most clinicians from just a standard patient interview and likely accounts for the overestimation of the patients' ECOG PS by the clinicians.

The HOLA COVID-19 Study: An International Effort to Determine How COVID-19 Has Impacted Oncology Practices in Latin America.

Countries in Latin America and the Caribbean have become hotspots of the novel coronavirus (COVID-19) pandemic, exacerbating socioeconomic inequalities and overwhelming fragmented health systems. Studies from the United States and Europe have highlighted the disproportionate effects of COVID-19 on patients with cancer and the disruption it has caused on cancer care delivery. The HOLA COVID-19 Study aims to understand how cancer care in Latin American countries has been affected by the COVID-19 pandemic.

Fear of Cancer Recurrence in Patients With Localized Renal Cell Carcinoma.

PURPOSE: Patients with cancer commonly report distress and fear of cancer recurrence (FCR) impacting quality of life and clinical outcomes. This study aims to test the association between emotional well-being and clinical characteristics of survivors with localized renal cell carcinoma (RCC). MATERIALS AND METHODS: Survivors with localized RCC were invited to participate in this study through social media by the Kidney Cancer Research Alliance. Participants self-reported clinical characteristics, distress (Distress Thermometer), and FCR (Fear of Cancer Recurrence-7). Ordinal regression was used to test the association between emotional well-being and patient characteristics. RESULTS: A total of 412 survivors were included in this analysis. Participants were mostly female (79.4%) and well educated (58.3%), with a median age of 54 years (range, 30-80 years) and median time since diagnosis of 17.5 months. More than one half were diagnosed with stage I disease (56.1%). Most patients (62.3%) had a clear understanding of their diagnosis. A high prevalence of moderate to severe distress (67.0%) and FCR (54.9%) was reported across all survivors of RCC. Higher FCR was associated with female gender, younger age, and lack of understanding of their diagnosis (P = .001), whereas more recent diagnosis was associated with higher distress levels (P = .01). CONCLUSION: Our findings suggest that FCR is a common problem that is persistent after therapy and that certain individuals, including female and younger patients, may be at particular risk of experiencing clinically relevant FCR.

Emotional Distress During the COVID-19 Pandemic: Psycho-Oncology Perspective.

Patients with cancer represent a vulnerable population and are at greater risk of developing serious complications as a result of a COVID-19 infection. In response, oncology societies around the world have proposed changes to their standards of care. These changes have helped guide health care providers in prioritizing clinical management of patients with cancer: identifying situations in which urgent intervention is needed and those that can be triaged until the risk of infection has lessened.

Correlates of clinical benefit from immunotherapy and targeted therapy in metastatic renal cell carcinoma: comprehensive genomic and transcriptomic analysis.

BACKGROUND: The clinical significance of tumor-specific genomic alterations in metastatic renal cell carcinoma (mRCC) is emerging, with several studies suggesting an association between PBRM1 mutations and response with immunotherapy (IO). We sought to determine genomic predictors of differential response to vascular endothelial growth factor-tyrosine kinase inhibitors (VEGF-TKIs) and IO. METHODS: Consecutive patients who underwent genomic profiling were identified; patients receiving either VEGF-TKIs or IO were included. Clinical tumor-normal whole exome sequencing and tumor whole transcriptome sequencing test were performed using a Clinical Laboratory Improvement Amendments (CLIA)-certified assay (Ashion Analytics; Phoenix, Arizona, USA). Genomic findings were compared between patients with clinical benefit (CB; complete/partial response or stable disease for >6 months) and no clinical benefit (NCB) in VEGF-TKI-treated patient cohort and IO-treated patient cohort. RESULTS: 91 patients received genomic profiling and 58 patients received VEGF-TKI and/or IO therapy. 17 received sequenced treatment involving both VEGF-TKI and IO, resulting in 32 patients in the IO cohort and 43 patients in the VEGF-TKI cohort. The most commonly used IO and VEGF-TKIs were nivolumab (66%) and sunitinib (40%). The most frequently detected alterations in the overall cohort were in VHL (64%), PBRM1 (38%), SETD2 (24%), KDM5C (17%) and TERT (12%). TERT promoter mutations were associated with NCB in the IO cohort (p=0.038); transcriptomic analysis revealed multiple differentially regulated pathways downstream of TERT. TERT promoter mutations and PBRM1 mutations were found to be mutually exclusive. While PBRM1 mutations were more prevalent in patients with CB with IO and VEGF-TKIs, no statistically significant association was found. CONCLUSIONS: Our analysis found that TERT promoter mutations may be a negative predictor of outcome with IO and are mutually exclusive with PBRM1 loss-of-function mutations.

Patient-reported Outcome Measures in Metastatic Urinary Cancers.

Patient-reported outcome measures (PROMs) have widely been used to assess treatment-related symptoms in clinical trials and provide insight into the patients' perspective during treatment. This mini-review sought to outline the benefits of measuring patient-reported outcomes, describe the most common measures used in recent pivotal studies in metastatic urinary cancers, and summarize the main findings published in the last 2 yr. In general, European Organization for Research and Treatment Cancer QLQC30 and Functional Assessment of Cancer Therapy were the most common PROMs used in these trials. PROMs provided important information concerning patients' quality of life and symptom burden during treatment, including insight into how these drugs may be tolerated in real-world clinical circumstances; however, many still do not assess patients' social and emotional experiences. Based on this mini-review, the combination of a symptomatic toxicity scale and validated quality of life measure represents a reliable strategy to assess patient perspectives during treatment. PATIENT SUMMARY: In this mini-review on patient-reported outcomes measures (PROMs), we explored data from recent pivotal studies in metastatic urinary cancer. We found that all recent clinical trials in metastatic urinary cancers assessed patient-reported outcomes, primarily through the use of quality of life measures. We recommend the use of both a symptomatic toxicity scale and a quality of life scale to evaluate PROMs.

Association between chemotherapy toxicity risk scores and physical symptoms among older Brazilian adults with cancer.

OBJECTIVE: Utilizing the Cancer and Aging Research Group (CARG) chemotherapy toxicity risk score before starting treatment in older adults with cancer is guideline-recommended. However, this has not been tested in most developing countries. We investigated the use of a Portuguese version of the CARG score, including the association between this score and physical symptoms, among older Brazilian adults with cancer. PATIENTS AND METHODS: We enrolled patients aged ≥65 starting chemotherapy at a public Brazilian hospital. A Portuguese version of the CARG tool was created and linguistically validated. Patients were assessed for chemotherapy toxicity risk using the CARG score, and physical symptoms were evaluated using the Functional Assessment of Cancer Treatment-General (FACT-G) scale. Multivariable logistic regression was used to identify physical symptoms associated with high CARG scores, including pain, nausea, and fatigue. RESULTS: Older patients (65+) with cancer were enrolled (n = 117). Patients were mostly female (57.3%), white (52.1%), married (52.1%), and had less than high school education (75.2%). Breast, gastrointestinal and lung cancers were the most common diagnosis, and 66.7% had metastatic disease. Elevated pain scores (P < .01) were associated with higher chemotherapy toxicity risk scores, even after adjusting for potential confounders. CONCLUSION: We created and implemented a Portuguese language version of the CARG tool. We found that, although physical symptoms are not included in the CARG model, elevated pain was strongly associated with having a high CARG score. As a modifiable risk factor, pain should be addressed among older patients with cancer considering chemotherapy, to help mitigate their risks for toxicity.

Distress and Quality of Life Among Patients with Advanced Genitourinary Cancers.

Patients with advanced genitourinary cancers face many challenges throughout their disease trajectory, and many will experience clinically relevant psychosocial distress. Certain groups, including female gender, younger age (and older age for suicide), unmarried status, and non-clear cell histology, remain at a higher risk, and evidence suggests that those with kidney and bladder cancers may be at an increased risk of suicide. Routine psychosocial screening, with brief validated tools, has the ability to identify patients' unmet needs, assist the health care team in addressing such symptoms, and subsequently improve quality of life, adherence, and clinical outcomes. Effective supportive care modalities are available that address common patient needs in the context of incurable disease (eg, emotional and physical symptoms); however, challenges remain in terms of patient acceptance and access through insurance coverage. As a result, remote home-based interventions have emerged with the potential to mitigate emotional symptom burden and improve disease adjustment. In this study, we highlight studies reporting on the prevalence of psychosocial distress and associated risk factors in advanced genitourinary cancers, and review evidence-based interventions for the management of distress, including distress screening and psychosocial interventions. PATIENT SUMMARY: This mini-review reports the prevalence of psychosocial distress and associated risk factors among patients with advanced kidney, bladder, or prostate cancer. We found that patients with these types of advanced genitourinary cancers are at a great risk of distress, including suicide, with consequent impairments in quality of life. We recommend that a distress screening program be incorporated as the standard of care and that referrals to appropriate psychosocial interventions be available to assist patients in greatest need.

Perception of cure among patients with metastatic genitourinary cancer initiating immunotherapy.

BACKGROUND: Despite the advent of checkpoint inhibitors (CPIs) for advanced genitourinary (GU) cancers, existing studies suggest that durable complete responses are observed in fewer than 10% of patients. This study sought to evaluate the association between expectations of cure reported by patients with advanced GU cancers initiating immunotherapy and quality of life (QOL), anxiety and depression. PATIENT AND METHODS: A single-institution, cross-sectional survey study was conducted with patients preparing to receive CPIs for treatment of metastatic renal cell carcinoma (RCC), urothelial cancer (UC) and prostate cancer (PC). Patients were assessed prior to initiation of immunotherapy for expectations of cure (divided into four quartiles), quality of life (QOL; Functional Assessment of Chronic Illness Therapy-General [FACT-G]), and symptoms of anxiety and depression (PROMIS). RESULTS: Sixty patients were enrolled, with metastatic RCC, UC and PC comprising 63, 28 and 8% of the study population, respectively. Median age of the cohort was 65 (range, 31-91), and 68% were male; 33% received CPI in the first-line setting. Despite extensive counseling from oncologists regarding potential clinical outcomes with immunotherapy, a substantial proportion of patients (23%) harbored inaccurate expectations regarding the potential benefit of immunotherapy. Importantly, patients with accurate expectations of cure reported lower anxiety scores using the PROMIS-Anxiety inventory. No significant differences were found between expectations of cure and quality of life or depression, using the FACT-G and PROMIS-Depression inventories, respectively. CONCLUSION: The current study found that a considerable proportion of patients with advanced GU cancers harbor inaccurate expectations concerning the potential benefit of immunotherapy. These results suggest that more effective counselling may mitigate patient anxiety, and potentially promote treatment satisfaction and adherence.

Examining Public Communication About Kidney Cancer on Twitter.

PURPOSE: Several studies have described the content of Twitter conversations about lung, breast, and prostate cancer, but little is known about how the public uses Twitter to discuss kidney cancer. We sought to characterize the content of conversations on Twitter about kidney cancer and the participants engaged in these dialogues. METHODS: This qualitative study analyzed the content of 2,097 tweets that contained the key words kidney cancer from August 1 to 22, 2017. Tweets were categorized by content domain of conversations related to kidney cancer on Twitter and user types of participants in these dialogues. RESULTS: Among the 2,097 kidney cancer-related tweets analyzed, 858 (41.4%) were authored by individuals, 865 (41.2%) by organizations, and 364 (17.4%) by media sites. The most common content discussed was support (29.3%) and treatment (26.5%). Among the 2,097 tweets, 825 were unique tweets, and 1,272 were retweets. The most common unique tweets were about clinical trials (23.9%), most often authored by media sites. The most common retweets were about treatment (38.5%), most often authored by organizations. CONCLUSION: Twitter dialogues about kidney cancer are most commonly related to support and treatment. Our findings provide insights that may inform the design of new interventions that use social media as a tool to improve communication of kidney cancer information. Additional efforts are needed to improve our understanding of the value and direct utility of social media in improving kidney cancer care.

Sources of Frustration Among Patients Diagnosed With Renal Cell Carcinoma.

Despite numerous therapeutic advances in renal cell carcinoma (RCC), little is known about patients' perspectives on cancer care. An international survey was conducted to identify points of frustration associated with cancer care reported by patients with RCC. Data were obtained from an online survey, conducted from April 1 to June 15, 2017, through social media and patient networking platforms. This survey obtained baseline demographic, clinicopathologic, and treatment-related information. Open-ended questions accessed sources of frustration in cancer-related care and patients' suggestions for amelioration. Responses were categorized and reviewed by independent reviewers. A qualitative analysis was performed and the Kruskal-Wallis test was used to define associations between baseline characteristics and sources of frustration. Among 450 patients surveyed, 71.5% reported sources of frustration, classified as either emotional (48.4%) or practical (23.1%). The most common were fear of recurrence/progression (15.8%), distrust of their cancer care system (12.9%), and lack of appropriate information (9.8%). Female gender and non-clear cell histology were associated with both types of frustration, and older age was linked to practical sources of frustration. Patients suggested solutions included greater compassion among health care practitioners (20.7%), better access to information (15.1%) and research to improve their chances of being cured (14.7%). Sources of frustration related to emotional and practical causes were identified amongst patients with RCC. Certain demographic and clinical characteristics were associated with more sources of frustration. This study provides the first characterization of specific ways to improve the patient experience by addressing common frustrations.

Biopsychosocial distress and clinical outcome in metastatic renal cell carcinoma.

OBJECTIVE: Limited research exists examining the biopsychosocial experience of patients diagnosed with metastatic renal cell carcinoma (mRCC), a disease commonly associated with a poor prognosis. The purpose of this study was to describe rates and types of distress in mRCC patients and explore the relationship between distress and overall survival. METHOD: A cohort of 102 patients with mRCC treated at a single institution was assessed by a touch screen-based instrument comprising 22 core items spanning physical, practical, functional, and emotional domains. Association between biopsychosocial distress and clinicopathologic criteria was interrogated. Overall survival was compared between patients with low distress versus high distress.ResultHigh rates of distress (20.7%) were found among patients newly diagnosed with mRCC. Among those domains contributing to distress, pain, fatigue, and financial comorbidity were the most commonly reported by patients with mRCC. A trend toward poorer overall survival in those patients with high distress versus low distress was observed among mRCC patients.Significance of resultsBased on data from a relatively large sample of patients, this study provides the first specific insights into the potential impact of biopsychosocial distress and outcomes among patients with mRCC.