Exploring knowledge, perspectives, and misperceptions of palliative care: A mixed methods analysis.

OBJECTIVES: To better understand palliative care knowledge and beliefs of patients with stage II or greater bladder cancer and their caregivers. SUBJECTS AND METHODS: Participants were primarily patients diagnosed with muscle-invasive or locally advanced bladder cancer. All were encouraged to enroll with a caregiver (defined as the individual who most closely assists with a patient's care). Participants completed a survey and semistructured interview. Applied thematic analysis techniques were used to analyze the interview data. In total, we recruited 16 dyads, 11 patients who participated alone, and 1 caregiver who participated alone. RESULTS: Patients and caregivers had high levels of palliative care knowledge and there was no difference in baseline knowledge. Palliative care receptivity was also high, with most participants stating that they would be "very likely" to consider palliative care for themselves or a loved one. However, based on the analysis of multiple-choice palliative care questions and interview transcripts, many participants lacked a nuanced understanding of palliative care and harbored many common misconceptions of the basic tenants. Five main themes emerged related to palliative care: (1) Participants have a general lack of awareness of it, (2) Participants associate it with hospice and death, (3) Participants view it as primarily emotional or psychological support, (4) Participants believe it is for patients without a strong support system, and (5) Participants believe it is for people who have "given up." CONCLUSIONS: High educational attainment and baseline palliative care knowledge did not preclude the most common misperceptions related to palliative care. These study results indicate that patients need clearer counseling regarding the definition, goals, benefits, and availability of palliative care.

Developing a Patient-Reported Outcome Measure for Radionuclide Therapy for Prostate Cancer.

The field of radionuclide therapy (RNT) for prostate cancer (PC) is growing rapidly, with recent Food and Drug Administration approval of the first 177Lu-PSMA ligand. We aimed to develop the first patient-reported outcome (PRO) measure for PC patients receiving RNT. Methods: We identified relevant symptoms and toxicities by reviewing published trials and interviews with PC patients receiving RNT (n = 29), caregivers (n = 14), and clinicians (n = 11). Second, we selected items for measure inclusion. Third, we refined the item list with input from experts in RNTs and PROs. Fourth, we finalized the Functional Assessment of Cancer Therapy-Radionuclide Therapy (FACT-RNT) with patient input. Results: This multistep process yielded a brief 15-item measure deemed by key stakeholders to be relevant and useful in the context of RNT for PC. Conclusion: The FACT-RNT is a new standardized tool to monitor relevant symptoms and toxicities among PC patients in RNT trials and real-world settings.

Psychological Impact of COVID-19 on Oncology Patients: Perceptions of Oncology Health Care Providers.

The COVID-19 pandemic profoundly impacted psychological well-being worldwide. Oncology health care professionals' (OHCPs') perceptions of psychological effects of COVID-19 among people in active cancer treatment were explored. Semi-structured interviews with a purposive sample of OHCPs actively providing care were conducted. Interviews were audio-recorded, transcribed, and coded using Atlas.ti v8 and thematic analysis. In total, 30 OHCPs participated. Most were registered nurses (70%), worked in outpatient setting (56.7%) and were in their current position 1-5 years (53.3%). Overarching themes are as follows: (a) cancer treatment disrupted due to patients' fear of exposure to COVID-19; (b) social distancing restrictions caused discontinued social support and supportive services that exacerbated psychological distress; (c) pandemic-related stressors led to overwhelmed coping skills; and (d) OHCPs played a vital role in providing emotional support and connecting patients with family/friends through technology. Behavioral health interventions should focus within the "new world of COVID-19" of reduced face-to-face support and increased online support for patients.

"I Beat Cancer to Feel Sick:" Qualitative Experiences of Sleep Disturbance in Black Breast Cancer Survivors and Recommendations for Culturally Targeted Sleep Interventions.

BACKGROUND: Sleep disturbance is common and distressing among cancer survivors. Black breast cancer survivors (BBCS) suffer disproportionately from sleep disturbance, yet there is limited research on how to address this issue. PURPOSE: This study aimed to understand the multifaceted experiences of sleep disturbance among BBCS and how to culturally target a mobile health (mHealth) intervention to improve sleep outcomes in BBCS. METHODS: Semi-structured interviews were conducted in a purposive sample of 10 BBCS. Interviews were audio-recorded, transcribed, and coded for key barriers to sleep and potential solutions to incorporate into behavioral interventions using NVivo 12. Inductive applied thematic analysis techniques were employed to identify emergent themes. RESULTS: Ten BBCS (mean age = 54, SD = 10) described their experiences of sleep disturbance with themes including: (1) barriers to quality sleep (e.g., cancer worry, personal responsibilities), (2) psychosocial impacts of sleep disturbance (e.g., fatigue, distress), and (3) commonly used strategies to improve sleep. The second section discusses suggestions for developing mHealth interventions to improve sleep for BBCS including: (1) feedback on an existing mHealth intervention and (2) intervention topics suggested by BBCS. CONCLUSIONS: Our findings highlight the challenges associated with sleep disturbance in BBCS. Participants report culturally targeted mHealth interventions are needed for BBCS who experience chronic sleep disturbance that affects their overall quality of life. These interventions should address coping with sleep-related issues relevant to many breast cancer survivors and BBCS (e.g., sexual intimacy, fear of cancer recurrence) and should incorporate intervention strategies acceptable to BBCS (e.g., prayer, meditation).

Cancer Screening Among Rural and Urban Clinics During COVID-19: A Multistate Qualitative Study.

PURPOSE: The effects of COVID-19 have been understudied in rural areas. This study sought to (1) identify cancer screening barriers and facilitators during the pandemic in rural and urban primary care practices, (2) describe implementation strategies to support cancer screening, and (3) provide recommendations. METHODS: A qualitative study was conducted (N = 42) with primary care staff across 20 sites. Individual interviews were conducted through videoconference from August 2020 to April 2021 and recorded, transcribed, and analyzed using deductive and inductive coding (hybrid approach) in NVivo 12 Plus. Practices included federally qualified health centers, tribal health centers, rural health clinics, hospital/health system-owned clinics, and academic medical centers across 10 states including urban (55%) and rural (45%) sites. Staff included individuals serving in the dual role of health care provider and administrator (21.4%), health care administrator (23.8%), physician (19.0%), advanced practice provider (11.9%), or resident (23.8%). The interviews assessed perceptions about cancer screening barriers and facilitators, implementation strategies, and future recommendations. RESULTS: Participants reported multilevel barriers to cancer screening including policy-level (eg, elective procedure delays), organizational (eg, backlogs), and individual (eg, patient cancellation). Several facilitators to screening were noted, such as home-based testing, using telehealth, and strong partnerships with referral sites. Practices used strategies to encourage screening, such as incentivizing patients and providers and expanding outreach. Rural clinics reported challenges with backlogs, staffing, telehealth implementation, and patient outreach. CONCLUSION: Primary care staff used innovative strategies during the pandemic to promote cancer screening. Unresolved challenges (eg, backlogs and inability to implement telehealth) disproportionately affected rural clinics.

'They say you can get addicted': Exploring factors that fuel the fear of addiction to prescription opioids among cancer survivors.

OBJECTIVES: To explore misconceptions regarding addiction potential of prescription opioids among cancer survivors. METHODS: A qualitative study using semi-structured interviews were conducted with a purposive sample of cancer survivors (N = 25) treated with prescription opioids for pain management. Interviews were audio recorded, transcribed and coded using Atlas.ti version 8. Inductive applied thematic analysis techniques were employed to identify emergent themes. RESULTS: The majority of participants were breast cancer survivors (88%) who underwent a combination of surgery, chemotherapy and radiation (72%). Thematic analysis revealed that (1) cancer survivors view opioids as an illicit drug, (2) media narrative of the opioid epidemic increased negative perception of opioid use for cancer-related pain, (3) perceptions of opioids were also informed by experiences of friends and family with an opioid use disorder, (4) poor understanding of terminology resulted in misconceptions of opioid use and addiction and (5) fear of opioid addiction resulted in unrelieved cancer pain and poor quality of life. CONCLUSION: Our findings support previously identified concerns among cancer patients about fear of addiction to opioids, a barrier to effective pain management. It highlights the importance for health care providers caring for cancer survivors to continue to address misconceptions about prescribed opioids.

Framing Cancer Survivors' Access to and Use and Disposal of Prescribed Opioids Within the Opioid Epidemic.

PURPOSE: To explore cancer survivors' access to and use and disposal of opioids in the context of the opioid epidemic. PARTICIPANTS & SETTING: Community-based recruitment strategies were employed for individuals aged 18 years or older who were previously diagnosed with cancer, completed cancer treatment within the past five years, or were cancer free, and who were prescribed opioids for cancer-related pain. METHODOLOGIC APPROACH: This qualitative study used semistructured interviews. Data were analyzed using applied thematic analysis techniques. FINDINGS: Themes included the following: (a) restrictive policies affecting opioid access and supply, (b) decreased opioid use because of concerns of addiction and other opioid-related side effects, and (c) lack of clarity on safeguarding and disposal of opioids. IMPLICATIONS FOR NURSING: Cancer survivors may encounter barriers to opioid access, alter medication-taking behavior over fear of addiction and side effects, and face inadequate education regarding proper disposal of opioids. Nurses can advocate for appropriate access to prescribed opioids, assess opioid-taking behavior, provide education regarding storage and disposal, and implement educational interventions accordingly.

The Use of Telehealth to Provide Continuity of Cancer Care during the COVID-19 Pandemic: Advantages, Disparities, and Implications to Promote Health Equity.

Perceptions of oncology health care providers use of telehealth to provide care to patients during the COVID-19 pandemic were explored. A qualitative study using semi-structured interviews and purposive sampling (N = 30) was conducted. Four themes emerged: 1) telehealth provided continuity of cancer care and used to decrease the risk of COVID-19 exposure; 2) advantages brought about convenience and inclusion of family caregivers; 3) telehealth revealed geographic, aging, and racial/ethnic disparities and digital illiteracy; and 4) rapid implementation was challenging. Telehealth provides a number of opportunities to support care for vulnerable cancer patients during this health crisis; however, disparities must be addressed.

Improving Electronic Survey Response Rates Among Cancer Center Patients During the COVID-19 Pandemic: Mixed Methods Pilot Study.

BACKGROUND: Surveys play a vital role in cancer research. During the COVID-19 pandemic, the use of electronic surveys is crucial to improve understanding of the patient experience. However, response rates to electronic surveys are often lower compared with those of paper surveys. OBJECTIVE: The aim of this study was to determine the best approach to improve response rates for an electronic survey administered to patients at a cancer center during the COVID-19 pandemic. METHODS: We contacted 2750 patients seen at Moffitt Cancer Center in the prior 5 years via email to complete a survey regarding their experience during the COVID-19 pandemic, with patients randomly assigned to a series of variations of prenotifications (ie, postcard, letter) or incentives (ie, small gift, modest gift card). In total, eight combinations were evaluated. Qualitative interviews were conducted to understand the level of patient understanding and burden with the survey, and quantitative analysis was used to evaluate the response rates between conditions. RESULTS: A total of 262 (9.5%) patients completed the survey and 9 participated in a qualitative interview. Interviews revealed minimal barriers in understanding or burden, which resulted in minor survey design changes. Compared to sending an email only, sending a postcard or letter prior to the email improved response rates from 3.7% to 9.8%. Similarly, inclusion of an incentive significantly increased the response rate from 5.4% to 16.7%, especially among racial (3.0% to 12.2%) and ethnic (6.4% to 21.0%) minorities, as well as among patients with low socioeconomic status (3.1% to 14.9%). CONCLUSIONS: Strategies to promote effective response rates include prenotification postcards or letters as well as monetary incentives. This work can inform future survey development to increase response rates for electronic surveys, particularly among hard-to-reach populations.

Perceptions of prescription opioid medication within the context of cancer survivorship and the opioid epidemic.

PURPOSE: Prescription opioid medication can be of great benefit for cancer patients and survivors who suffer from cancer-related pain throughout their cancer care trajectory. However, the current opioid epidemic has influenced how such medications are perceived. The purpose of this study was to explore the perceptions of opioid use and misuse in cancer survivorship within the context of the opioid epidemic. METHODS: pt?>A qualitative study using a semi-structured interview was conducted with a purposive sample of health care professionals (n = 24), community-level stakeholders (n = 6), and cancer survivors (n = 25) using applied thematic analysis techniques. RESULTS: Crosscutting themes include (1) fear of addiction and living with poorly managed pain, (2) the importance of good patient/provider communication and the need for education around the use/handling/disposal of prescription opioid medication, (3) preference for nonopioid alternatives for pain management, (4) cancer survivors perceived to be low risk for developing opioid use disorder (include inconsistent screening), and (5) impact of policies aimed at curbing the opioid epidemic on cancer survivors. CONCLUSION: This study illustrates the intersecting and sometimes conflicting assumptions surrounding the use of opioids analgesics in the management of cancer pain among survivors embedded within the national discourse of the opioid epidemic. IMPLICATIONS FOR CANCER SURVIVORS: A system of integrated cancer care using psychosocial screening, opioid risk mitigation tools, opioid treatment agreements, and specialist expertise that cancer care providers can rely on to monitor POM use in conjunction with patient-centered communication to empower patients informed decision making in managing their cancer pain could address this critical gap in survivorship care.

Understanding Cancer Survivors' Educational Needs About Prescription Opioid Medications: Implications for Cancer Education and Health Literacy.

Cancer survivors' perceptions of prescription opioid medication (POM) and the health communications they receive about POM's safety and effectiveness are embedded within the national discourse of the opioid epidemic. Using qualitative methods, this community-based study explored the health communication and the educational needs of diverse cancer survivors who received opioid agonist treatment to manage cancer pain. Our community-based sample consisted of 25 cancer survivors, 24 healthcare providers, and six community-level stakeholders. Over half of the cancer survivors interviewed were from underrepresented minority groups (52% African American and 12% Hispanic/Latino). The data were analyzed using applied thematic analysis techniques. The over-arching themes include the need to (1) provide clear, consistent, and comprehensive education and information about POM to ensure safe use; (2) discuss the risks, benefits, and proper use of POM in the treatment of cancer-related pain; (3) communicate realistic expectations and address common misconceptions about pain; and (4) address cancer survivor beliefs and concerns surrounding fear of addiction. Our findings highlight the need for effective cancer education and communication about opioid agonist treatment and POM in plain simple language that is easy to understand, relevant, and culturally appropriate. Recommendations for cancer education and suggestions for future research are discussed.

Nutritional implications of opioid use disorder: A guide for drug treatment providers.

The number of Americans seeking treatment for opioid use disorder (OUD) continues to increase. However, there are important nutritional implications of having OUD that often get overlooked by drug treatment providers. OUDs can cause metabolic changes, constipation, and weight loss, or lead to a lifestyle that results in inadequate food intake and unhealthy eating patterns. Nutritional factors associated with OUD can also hinder treatment outcomes and recovery. Addiction providers tend to give little attention to the nutritional implications of OUD, and this knowledge is rarely incorporated into treatment plans. The goal of this article, therefore, is to summarize the existing literature on the connection between OUD and nutrition to help guide treatment programs. This article (a) describes the nutritional consequences associated with misusing opioids, (b) discusses the role that nutrition can play in OUD treatment and recovery, (c) summarizes the nutritional implications of medication treatment for OUD, and (d) recommends nutritional interventions that might aid in the treatment of OUD. This article directly fills a gap in the OUD literature and has the potential to serve as a guide for drug treatment providers to make more informed nutritional recommendations to their clients. Treatment programs may wish to consider the issues raised in this paper before launching nutritional programs at their facility. (PsycInfo Database Record (c) 2020 APA, all rights reserved).

Opioid-related mortality in rural America: Geographic heterogeneity and intervention strategies.

Over the last two decades, opioid-related mortality rates have increased dramatically to become a serious public health concern in the United States. Opioid-related mortality has reached epidemic levels in certain rural areas of the U.S., such as Appalachia, New England, and the Mountain West, while remaining relatively low in others, such as the Delta South and Great Plains. Explanations for geographic variation in opioid mortality are unclear, contributing to ineffective policies and interventions. The goal of this article is to summarize the existing literature on the opioid epidemic in the rural U.S. to help guide intervention efforts. This paper 1) describes geographic heterogeneity in opioid-related mortality, with a focus on rural areas, 2) summarizes factors that likely contribute to this heterogeneity, and 3) discusses potential strategies for addressing the opioid epidemic in the hardest-hit rural communities. The information presented in this paper dispels the myth that the opioid epidemic is disproportionately rural, and demonstrates that the magnitude of the epidemic has varied considerably across different rural areas. This paper provides important insights for public health professionals, treatment practitioners, researchers, and policymakers as they work toward solutions that take into account the diversity of rural communities and the dynamic nature of the opioid epidemic.