Prognostic Understanding and Goals of Palliative Radiotherapy: A Qualitative Study.

CONTEXT: There is a paucity of data describing patients' expectations of goals of palliative radiotherapy (RT) and overall prognosis. OBJECTIVES: To explore patients' perceptions of and preferences for communication surrounding goals of palliative RT and cancer prognosis. METHODS: We conducted a qualitative study utilizing semi-structured interviews with seventeen patients with either bone or lung metastases receiving their first course of palliative RT at a comprehensive cancer center. All patient interviews were recorded, transcribed verbatim, and thematically analyzed. RESULTS: Themes of goals of palliative RT centered on either restoration, such as through improving quality of life or minimizing pain, or on a desire to combat cancer by eliminating tumor. While most patients perceived that palliative RT would palliate symptoms but not cure their cancer, some patients believed that the goal of palliative RT was to cure. Themes that emerged surrounding patients' understanding of prognosis and what lies ahead included uncertainty and apprehension about the future, a focus on additional treatment, and confronting mortality. Most patients preferred to receive information about goals of treatment and prognosis from their doctors, including radiation oncologists, rather than other members of the medical team. Patients also expressed a desire for written patient education materials on palliative RT. CONCLUSION: Unclear perceptions of goals of treatment and prognosis may motivate some patients to pursue unnecessarily aggressive cancer treatments. Patients desire prognostic information from their doctors, including radiation oncologists, who are important contributors to goals of care discussions and may improve patient understanding and well-being by using restorative rather than combat-oriented language.

Barriers to Electronic Patient-Reported Outcome Measurement Among Patients with Cancer and Limited English Proficiency.

Importance: Often electronic tools are built with English proficient (EP) patients in mind. Cancer patients with limited English proficiency (LEP) experience gaps in care and are at risk for excess toxic effects if they are unable to effectively communicate with their care team. Objective: To evaluate whether electronic patient-reported outcome tools (ePROs) built to improve health outcomes for EP patients might also be acceptable for LEP patients in the context of oral cancer-directed therapies (OCDT). Design, Setting, and Participants: This qualitative study was conducted at a single National Cancer Institute-designated comprehensive cancer center. In 2019, English-speaking and Spanish-speaking LEP patients with cancer receiving oral chemotherapies were recruited to participate in a qualitative focus group examining patient attitudes toward ePROs and electronic tools that are used to manage adherence and symptoms related to oral therapies. Six focus groups were held for EP patients and 1 for Spanish-speaking LEP patients. LEP was defined as patients who self-identified as needing an interpreter to navigate the health care system. Data analysis was performed April through June of 2019. Exposures: Enrolled patients participated in a focus group lasting approximately 90 minutes. Main Outcomes and Measures: The perspectives of patients with cancer treated with oral chemotherapies on integrating ePROs into their care management. Results: Among the 46 participants included in the study, 46 (100%) were White, 10 (22%) were Latinx Spanish-speaking, 43 (93%) were female, and 37 (80%) were aged at least 50 years or older. Among the 6 focus groups with 6 to 8 EP patients (ranging from 6 to 8 participants) and 1 focus group with 10 Spanish-speaking LEP patients, this qualitative study found that EP and LEP patients had different levels of acceptability of using technology and ePRO tools to manage their OCDT. EP patients felt generally positive toward OCDT and were not generally interested in using electronic tools to manage their care. LEP patients generally disliked OCDT and welcomed the use of technology for health management, particularly when addressing gaps in symptom management by their oncology clinicians. Conclusions and Relevance: Although most electronic interventions target EP patients, these findings reveal the willingness of LEP patients to participate in technology-based interventions. Expanding ePROs to LEP patients may help to manage gaps in communication about treatment and potential adverse events because of the willingness of LEP patients to use ePRO tools to manage their health. This qualitative assessment is a strategic step in determining the resources needed to narrow the digital health gap and extend the value of PROs to the LEP oncology population.

Acceptability of a companion patient guide to support expert consensus guidelines on surveillance mammography in older breast cancer survivors.

PURPOSE: To support shared decision-making, patient-facing resources are needed to complement recently published guidelines on approaches for surveillance mammography in breast cancer survivors aged ≥ 75 or with < 10-year life expectancy. We created a patient guide to facilitate discussions about surveillance mammography in older breast cancer survivors. METHODS: The "Are Mammograms Still Right for Me?" guide estimates future ipsilateral and contralateral breast (in-breast) cancer risks, general health, and the potential benefits/harms of mammography, with prompts for discussion. We conducted in-clinic acceptability testing of the guide by survivors and their clinicians at a National Cancer Institute-designated comprehensive cancer center, including two community practices. Patients and clinicians received the guide ahead of a clinic visit and surveyed patients (pre-/post-visit) and clinicians (post-visit). Acceptability was defined as ≥ 75% of patients and clinicians reporting that the guide (a) should be recommended to others, (b) is clear, (c) is helpful, and (d) contains a suitable amount of information. We also elicited feedback on usability and mammography intentions. RESULTS: We enrolled 45 patients and their 21 clinicians. Among those responding in post-visit surveys, 33/37 (89%) patients and 15/16 (94%) clinicians would recommend the guide to others; 33/37 (89%) patients and 15/16 (94%) clinicians felt everything/most things were clear. All other pre-specified acceptability criteria were met. Most patients reported strong intentions for mammography (100% pre-visit, 98% post-visit). CONCLUSION: Oncology clinicians and older breast cancer survivors found a guide to inform mammography decision-making acceptable and clear. A multisite clinical trial is needed to assess the guide's impact mammography utilization. TRIAL REGISTRATION: ClinicalTrials.gov-NCT03865654, posted March 7, 2019.

Patient-Provider Communication, Decision-Making, and Psychosocial Burdens in Palliative Radiotherapy: A Qualitative Study on Patients' Perspectives.

CONTEXT: Patient-provider communication impacts how patients with cancer make decisions about treatment. OBJECTIVES: To examine patient perceptions of discussions, decision-making, and psychosocial burdens related to receiving palliative radiotherapy (RT), in order to inform best practices for communication about palliative RT. METHODS: We conducted an exploratory qualitative study using oral questionnaires and semi-structured interviews. Seventeen patients receiving their first course of palliative RT for lung or bone metastases at a comprehensive cancer center were interviewed. Patient interviews were transcribed verbatim and thematically analyzed using NVivo software. RESULTS: Themes that impacted patients' decisions to initiate RT included a desire to minimize pain, optimism about what RT could provide for the future, perception of having "no other choice," disappointment about cancer progression, and unfamiliarity with RT. Most patients preferred shared decision-making regarding RT initiation and reported patient empowerment, effective communication, and team collaboration as contributing to shared decision-making. Most patients preferred their physicians to make decisions about RT treatment intensity and described trust in their physicians, institutional reputation, and RT expertise as motivators for this preference. Patients who possessed a proactive decisional mindset about initiating RT as opposed to having "no other choice" were less likely to report experiencing psychosocial burdens. CONCLUSION: Most patients prefer shared decision-making regarding RT initiation but prefer their radiation oncologists to make decisions regarding treatment intensity. Communication that empowers patients in their desired level of engagement for RT decision-making may help patients make informed decisions, contribute toward a proactive decisional mindset, and reduce their perception of psychosocial burdens.

Parent and patient perceptions of medical marijuana in the childhood cancer context.

BACKGROUND: Medical marijuana (MM) is legal in 34 US jurisdictions. Yet, little is known about patient and parent perceptions of MM in pediatric cancer care. We examined attitudes, beliefs, and experiences regarding MM among parents of children with cancer and adolescent and young adult (AYA) patients, to help frame future research initiatives. PROCEDURE: In this qualitative study, we conducted semi-structured, one-on-one interviews with parents and AYAs at a comprehensive cancer center. Interviews were audio-recorded, transcribed, and coded using both descriptive and inductive coding approaches. We used content and framework analysis to identify key themes. RESULTS: Fifteen parents and 15 AYAs enrolled. Participants were generally receptive to MM use, concurrently weighing benefits and risks. Participants most often endorsed MM use for relief of nausea, anorexia, and pain. Simultaneously, participants identified concerns about MM, including potential physiologic and psychological effects on children and lack of research. However, concerns were frequently minimized, relative to chemotherapy or supportive care medications with perceived greater side effect profiles. Many participants expressed uncertainty regarding legal access, citing complex processes to obtain MM. Few participants had discussed MM with their oncologist, instead seeking guidance from the internet, family, or peers. Importantly, we elicited several misconceptions regarding MM, including its utility as cancer-directed therapy. CONCLUSION: Patients and families are receptive to using MM, motivated by potential for symptom relief and cancer-directed effects. Yet, lack of empiric evidence is a barrier, underscoring the need for robust clinical trial data to support MM recommendations and use.

Cancer patients' experiences with medicinal cannabis-related care.

BACKGROUND: Little is known about medical cannabis (MC)-related care for patients with cancer using MC. METHODS: Semistructured telephone interviews were conducted in a convenience sample of individuals (n = 24) with physician-confirmed oncologic diagnoses and state/district authorization to use MC (Arizona, California, Florida, Illinois, Massachusetts, Oregon, New York, and Washington, DC) from April 2017 to March 2019. Standard qualitative techniques were used to assess the degree of MC-related health care oversight, MC practices, and key information sources. RESULTS: Among 24 participants (median age, 57 years; range, 30-71 years; 16 women [67%]), MC certifications were typically issued by a professional new to a patient's care after a brief, perfunctory consultation. Patients disclosed MCuse to their established medical teams but received little medical advice about whether and how to use MC. Patients with cancer used MC products as multipurpose symptom management and as cancer-directed therapy, sometimes in lieu of standard-of-care treatments. Personal experimentation, including methodical self-monitoring, was an important source of MC know-how. Absent formal advice from medical professionals, patients relied on nonmedical sources for MC information. CONCLUSIONS: Patients with cancer used MC with minimal medical oversight. Most received MC certifications through brief meetings with unfamiliar professionals. Participants desired but were often unable to access high-quality clinical information about MC from their established medical teams. Because many patients are committed to using MC, a product sustained by a growing industry, medical providers should familiarize themselves with the existing data for MM and its limitations to address a poorly met clinical need.

A qualitative study of sexual and reproductive health communication with adolescent and young adult oncology patients.

BACKGROUND: Adolescent and young adult patients with cancer (AYAs) identify sexual and reproductive health (SRH) as an important but often neglected aspect of their comprehensive cancer care. The purpose of this study was to explore AYA perceptions and experiences of SRH communication with oncology clinicians. METHODS: Twenty-three AYA patients and survivors ages 15-25 years from a large academic oncology center participated in semistructured qualitative interviews investigating their experiences discussing SRH issues, including specific topics discussed, conversation barriers and facilitators, suggestions for clinicians on how to improve conversations, and education and resource needs. Interviews were audio recorded, transcribed, and coded using a thematic analysis approach. RESULTS: Interviews with AYAs revealed two primary themes-a need for oncology clinicians to discuss SRH and critical gaps in current SRH communication practices. AYAs reported a need for improved SRH communication for the purposes of general education, addressing specific SRH issues experienced, and understanding the long-term impact of cancer and treatment on SRH. The current communication gaps are exacerbated by patient discomfort initiating conversations and the presence of family members. AYAs shared six key recommendations for clinicians on how to improve SRH communication. CONCLUSIONS: AYAs identify a role for oncology clinicians in discussing SRH as a primary aspect of comprehensive health care during cancer treatment and in survivorship; however, multiple gaps and barriers interfere with such discussions. Future efforts must focus on clinician education and training in SRH as well as education and intervention opportunities for AYAs to optimize the care provided.