financial navigators for patients with hematologic cancer and their caregivers found that the program secured an average of $2,500 in financial benefits for each participant (643). Patient reported outcomes (PROs), which are reports given by patients on their status that have not been interpreted by a clinician or anyone else, are being used in connection with the patient experience, particularly among those participating in clinical trials (see Sidebar 48, p. 142). Incorporating the patient’s perspective to understand treatment tolerability and efficacy is increasingly implemented in clinical trials and will improve the cancer treatment experience for patients in the real world (649). PROs are collected through questionnaires, which alert clinicians to the status of the patient regarding healthrelated quality of life, symptoms, and health-related behaviors (e.g., smoking, diet, physical activity) (650). Patients engaged in monitoring their symptoms may have improved clinical outcomes and reduced risk of emergency room and hospital visits compared to those who do not complete these questionnaires (651,652). Integration of real-world electronic health records with PRO assessments that provide automated alerts to clinicians will help improve patient outcomes. Technologies that improve access to care, such as telemedicine (see Sidebar 29, p. 75) and smartphone apps, have become essential tools used by physicians, care teams, and patients. Increasingly, phone apps are being utilized by health care systems to assist with oncology support, treatment adherence, and follow-up care. Clinical trials of these apps are ongoing; however, preliminary evidence shows that they are utilized by patients and help improve the survivorship experience during and after treatment (653-655). Supporting Caregivers Caregivers comprise family members or friends who help patients with long-term chronic illness and manage any and all aspects of their care. One in five U.S. adults (ages 18 to 64), accounting for over 53 million people, provided care for another person in 2020, a significant increase from 43.5 million in 2015 (656). It is further estimated that four million of these caregivers are caring for an adult cancer patient. More evidence of the challenges faced by caregivers is becoming clear, and there are many opportunities to assist this vulnerable population. Survivors require many resources that are often provided by their caregivers including arranging transportation, helping with day-to-day activities such as doctor visits, providing medical care or other clinical tasks, coordinating care, and giving emotional support. This often leads to caregivers deferring their own health care. One report shows that caregivers who are actively taking care of a family member were less likely to seek medical care including physician and emergency room visits (657). This is especially concerning among Black and Hispanic caregivers who spend more time caregiving compared to their White counterparts, potentially exacerbating health care disparities in these communities (658). While patients with cancer are susceptible to adverse mental health events, their caregivers may also experience higher levels of mental illness compared to the general population (662). It is vital that evidence-based resources be made available to help improve services and ensure optimal health for cancer caregivers. The use of smartphone apps specifically for caregivers to help manage their loved ones’ care is being tested and utilized by hospital systems. For instance, apps that allow a caregiver to report symptoms and subsequently provide resources for self and patient care can help reduce burden and relieve anxiety experienced by the caregiver (659,660). While these apps have been utilized for many other chronic conditions, their increasing use and effectiveness among caregivers of cancer patients and survivors will need to be continually evaluated (661). Patient Reported Outcomes Patient Reported Outcomes (PROs) are a way for a patient to report changes in quality of life or functional status associated with health care or treatment. Patient-reported outcome measures (PROMs) are the tools used to measure PROs. • PROs are not interpreted by a physician or anyone else and are a direct reflection of a patient’s experience. • PROs can include health-related quality of life, functional status, symptom and symptom burden, personal experience of care, and other health conditions such as anxiety and depression. • PROs are used in clinical trials to reflect how a new drug may impact the patient, which can help inform how well or badly the drug is being tolerated. • PROs are being increasingly used by pharmaceutical companies in the development of new therapeutics, which has the potential to improve the patient experience and increase safety by placing the patients at the center of decision-making. Adapted from (650). SIDEBAR 48 AACR Cancer Progress Report 2023 Supporting Cancer Patients and Survivors 142
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