Patients and caretakers of patients with renal cell carcinoma (RCC) may lack adequate knowledge surrounding disease treatment, clinical trial enrollment, and the psychosocial impact of the cancer itself, a new survey says.

Results from the global survey were presented as a poster during ESMO Congress 2021.

“(This) indicates opportunities to improve communication about diagnosis, psychosocial impacts, and clinical trials, as well as biopsies, physical exercise, and patient engagement,” wrote Dr. Rachel H. Giles, chair of the International Kidney Cancer Coalition, and colleagues wrote in the poster.

Of note, kidney cancer is the seventhmost common cancer, although little is known about variations in patient experience and best practices in different countries.

The survey consisted of 35 questions focused on the diagnosis, management, and burden of RCC. It was distributed in 13 different languages to patients with kidney cancer and their caregivers between October 29, 2020, and January 5, 2021. The survey reached 2,012 (1,586 patients, 417 caregivers, 9 undisclosed) participants from 41 countries.

“The survey identified several actionable deficits,” according to the poster.

According to the survey, 42% of participants reported that the likelihood of surviving their cancer beyond 5 years was not explained, whereas 51% reported that they were involved as much as they wanted to be in developing their treatment plan. Fifty percent of younger-onset patients (< 46 years) did not know their tumor subtype and 56% experienced barriers to their treatment. Of the surveyed population, 74% took fewer than 3 months to obtain a correct diagnosis.

Regarding clinical trials and perspectives on biopsies, 41% of respondents indicated that no one discussed cancer clinical trials with them, 46% had a biopsy and 3% said they were not willing to undergo an additional biopsy if asked.

For physical activity, survey results that 45% of respondents were insufficiently active and 55% said that they very often or always experienced a fear of recurrence.

Several questions in the survey also focused on psychosocial effects of the disease. Nearly a quarter (26%) of respondents reported that they either very often or always experienced stress related to financial issues and 50% experienced disease-related anxiety very often or always. More than half of participants (52%) reported talking to their doctors or health care teams about their psychological well-being.

Reference
Giles RH, Maskens D, Martinez R, et al. Patient-Reported Experience of Diagnosis, Management, and Burden of Renal Cell Carcinomas: Results from a Global Patient Survey in 41 Countries. Presented at 2021 ESMO Congress; September 16-21, 2021; Virtual. Abstract 671P

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A global study revealed that patients and caregivers alike reported insufficient knowledge surrounding renal cell carcinoma.

Global Study Suggests More Informational Resources Needed for Renal Cell Carcinoma 

An estimated 11% to 22% of patients with myeloproliferative neoplasms (MPN) lacked the appropriate medication prescriptions needed to manage comorbidities associated with thrombotic risk.

“These findings highlight a potential unmet need for improved cardiovascular risk management and coordination between primary and secondary care in the UK,” the study authors wrote in a poster presented at the 2021 European Hematology Association Virtual Congress.

In this retrospective cohort study, researchers assessed information from 2,477 patients with MPN (median age, 68 years; 56% women) from the Clinical Practice Research Datalink to determine the potential cardiovascular and thrombotic risk for all patients with MPN. Patients were included in this database at their first recorded diagnosis of polycythemia vera (n = 1,315), primary myelofibrosis (MF; n = 146) and essential thrombocythemia (n = 336). Some patients also had unspecified MPN (n = 680).

Researchers focused on pre-index assessments of the patients for six or more months before the first diagnosis and for at least 24 months post-index follow-up. During this time, researchers aimed to determine the epidemiological landscape of PMN, thrombotic/cardiovascular risk profiles before diagnosis, the extent of comorbidities using the Charlson score and the occurrence of thromboembolic/cardiovascular events after diagnosis.

Most patients (96.2%) had a low Charlson comorbidity score between 0 and 5. Moreover, the prevalence of MPN was 12.72 per 100,000. Authors noted that polycythemia vera was the most prevalent MPN subtype (6.75 per 100,000), followed by essential thrombocythemia (1.73 per 100,000) and MF (0.75 per 100,000). The rates of polycythemia vera and MF were consistent with other epidemiological reports from the UK, but the prevalence of essential thrombocythemia was lower than previous reports.

The most prevalent risk factors before MPN diagnosis included smoking (59.8%) and ischemic heart disease (27.7%). In contrast, few patients had hypertension (14.6%), diabetes (13.1%), dyslipidemia (12.8%) or obesity (8.8%). Patients with hypertension (88.9%), dyslipidemia (82.4%) and diabetes (77.9%) were prescribed appropriate medications for risk management. Of all the patients with MPN in this cohort, there were 325 cases of thrombosis before diagnosis, with a mean time of thrombosis to MPN diagnosis of 3,100.8 days.

After MPN diagnosis, 372 thromboembolic/cardiovascular events occurred. In particular, 214 events were observed in patients with polycythemia vera, 64 events in those with essential thrombocythemia, 9 events in patients with MF and 85 events in those with unspecified MPN. Authors noted that the most frequent thromboembolic/cardiovascular events were stroke (27.2%), deep vein thrombosis (17.7%) and myocardial infarction (14.8%). More patients with polycythemia vera had myocardial infarction (15.9%) compared with those with essential thrombocythemia (10.9%) or MF (0%).

Chen F, Rabe A, Were J, et al. An Epidemiological Study of the Cardiovascular Health and Thrombotic Risk Profiles of Patients with Myeloproliferative Neoplasms in Primary Care Across the United Kingdom. Presented at: 2021 European Hematologic Association Congress; Virtual. June 9-17, 2021. Abstract E1090.

This article was originally published on OncLive as 

“Improvements in Cardiovascular Risk Management Needed for MPN”

Despite relatively good cardiovascular health, a significant percentage of patients with MPN were not prescribed appropriate medication. 

Cardiovascular Risk Needs Addressing in Treatment of MPN 

Using a smartphone mobile app may increase patient adherence to oral chemotherapy (OC) regimens, according to a virtual poster presentation at the Oncology Nursing Society’s 46th Annual Congress.

“Studies show that mobile monitoring of cancer patients can be effective, may reduce chemotherapy-related toxicity and help maintain maximum dose intensity,” Erin Fusco, DNP, FNP-BC, MSN, OCN, RN, BSN, an associate professor of nursing at Quinnipiac University School of Nursing, said during the presentation, noting that the usefulness of apps also includes the added communication with providers and nurses.

“[An app] saves us time from having to take time off from the medication, and dose appropriately when the patient is showing a toxicity of concern. It gives us a moment to either hold the dose or lower the dose for a time period until the toxicity is noted,” Fusco said during the presentation.

The app includes medication instructions; the ability to input onset and intensity of therapy-related toxicities or symptoms; visuals to help patients determine the grade of toxicity; and a mobile oncological diary showing a patient’s prescribed therapy, self-assessed symptoms and general data. A web dashboard then allows health professionals to check data and monitor the patients. There’s also a built-in alarm model that alerts clinicians of critical condition — giving them time to respond in a timelier manner. A feedback loop is also included so that patients can tell developers what does and doesn’t work for them.

For patients, OC allows for more self-control and fewer hospital visits, but also comes along with the burden of having to manage the chemotherapy on their own, as well as monitor side effects. Other major burdens include having to integrate pills into everyday life, watching and waiting when side effects occur, whether or not the patient has family support, pills dominating daily life scheduling and the possibility of experiencing a life-threatening condition. These are all to be considered when it comes to designing a smartphone app.


Roadblocks that come along for patients who take OC include having to be assessed by the clinician for barriers (socioeconomic, physical, psychological or regulatory) that could affect adherence, and the fact that many patients believe that taking a pill is less harmful than undergoing intravenous chemotherapy, which is not true, Fusco said.

One of the most important steps, according to Fusco, is to train the staff on the app so that they are able to efficiently educate the patient — giving them more empowerment and a sense of self-control. “Education should include storage, handling, preparation, administration and disposal of oral chemotherapy, as well as supportive care medications and measures, drug and food interactions and a plan for missed doses,” she said during the presentation.

Overall, Fusco said that there is a need for more apps that are specifically designed for oncology patients. “This alone could encourage patient self-efficacy adherence and personalization of care,” she said during the presentation. Fusco noted that further studies should be conducted to research the efficacy in adherence.

Fusco E. Is There an App for That? An Integrative Review of the Use of Smartphone Mobile Apps for Patients Taking Oral Chemotherapy. Presented at: the Oncology Nursing Society 46th Annual Congress. April 20, 22, 27, 29, 2021.

The use of a smartphone mobile app showed that patients with cancer had higher adherence to oral chemotherapy regimens, especially when it came to safely monitoring chemotherapy toxicity and symptoms in real time.  

Antonia DePace

Articles

Global Study Suggests More Informational Resources Needed for Renal Cell Carcinoma

Cardiovascular Risk Needs Addressing in Treatment of MPN

Smartphone Mobile Apps Could Help Patients Monitor and Adhere to Oral Chemotherapy