Exploring experiences and expectations of prenatal health care and genetic counseling/testing in immigrant Latinas.

As the Latino population of the United States continues to increase, the specific needs of Latinos in genetic counseling continue to be unmet. Using culturally tailored genetic counseling responsive to the needs of the patient can assist in building rapport in genetic counseling sessions. We aimed to investigate the relationship between acculturation, prenatal care, genetic testing experiences, and expectations for prenatal care in an immigrant Latino population. A total of 20 Spanish-speaking, pregnant Latinas from various Latin American countries were interviewed after completing a prenatal genetic counseling session. The semi-structured phone interview included questions about the participants' experiences with genetic counseling/testing, prenatal health care in their home country, their current prenatal care in the United States, and information they felt to be important to know during their pregnancy. Although this study showed no statistically significant associations between acculturation, prenatal care, and genetic counseling/testing experiences, six significant content domains were identified as relevant to the participants. Overall, we found that immigrant Latinas desire to know prenatal risk information to help them prepare, relieve guilt, and help make screening/testing/family planning decisions. These Latinas reported the genetic counselor provided confidence, a sense of autonomy, and empowerment, for them to make their own decisions regarding prenatal screening/testing. The participants also spoke about stressors unique to the immigrant population, most notably being away from their older children and other family members. Identifying relevant factors about the lived experience of this population can help genetic counselors better address possible needs, feelings of guilt, and/or isolation and identifying women who could benefit from group-based prenatal care, support groups, or referrals to social work.

Automated pain intervention for underserved minority women with breast cancer.

BACKGROUND: Minority patients with breast cancer are at risk for undertreatment of cancer-related pain. The authors evaluated the feasibility and efficacy of an automated pain intervention for improving pain and symptom management of underserved African American and Latina women with breast cancer. METHODS: Sixty low-income African American and Latina women with breast cancer and cancer-related pain were enrolled in a pilot study of an automated, telephone-based, interactive voice response (IVR) intervention. Women in the intervention group were called twice weekly by the IVR system and asked to rate the intensity of their pain and other symptoms. The patients' oncologists received e-mail alerts if the reported symptoms were moderate to severe. The patients also reported barriers to pain management and received education regarding any reported obstacles. RESULTS: The proportion of women in both groups reporting moderate to severe pain decreased during the study, but the decrease was significantly greater for the intervention group. The IVR intervention also was associated with improvements in other cancer-related symptoms, including sleep disturbance and drowsiness. Although patient adherence to the IVR call schedule was good, the oncologists who were treating the patients rated the intervention as only somewhat useful for improving symptom management. CONCLUSIONS: The IVR intervention reduced pain and symptom severity for underserved minority women with breast cancer. Additional research on technological approaches to symptom management is needed.

A systematic review and meta-analysis of e-cigarette use among cancer survivors.

PURPOSE: We conducted a systematic review and meta-analysis to determine the use of e-cigarettes among cancer survivors, factors associated with their use, and prevalence of e-cigarette use as a quit attempt. METHODS: We searched five electronic databases until June 2022. Two authors independently selected studies, appraised their quality, and collected data. RESULTS: Twenty-three publications from eight data sources (national surveys) met our eligibility criteria. The pooled rate of lifetime e-cigarette use among cancer survivors was 15% (95% CI 6-27%); current use was 3% (95% CI 0-8%). Among survivors who currently used traditional cigarettes, 63% (95% CI 57-69%) also used e-cigarettes. The reported rates of weighted lifetime e-cigarette use differed between age groups (18-44 years, up to 46.7%; 45-64, up to 27.2%; ≥65, up to 24.8%). Nine publications reported factors associated with lifetime e-cigarette use (i.e., active use of traditional cigarettes; heavy drinking; poor mental health; younger age; being male, non-Hispanic White, or single; having less than high school education or income ≤$25,000 USD; and living in the South regions of the US or urban areas). E-cigarettes were used as a quit resource by 75% of survivors reporting dual use of electronic and traditional cigarettes (95% CI 63%, 85%). CONCLUSION: More than two-thirds of survivors currently using traditional cigarettes also use e-cigarettes. Higher use rates of e-cigarettes were reported among young cancer survivors compared to older survivors. Future studies are needed to assess the impact of e-cigarettes on long-term health and improve screening of smoking behaviors. IMPLICATIONS FOR CANCER SURVIVORS: Our study provides an overview of the prevalence of e-cigarette use and sociodemographic risk factors associated with e-cigarette use among cancer survivors. The findings can assist providers in supporting attempts to quit among cancer survivors.

Bereaved parents' perspectives on pediatric palliative care.

This study's goal was to describe and begin to understand the experience of bereaved parents whose deceased child had received pediatric oncology services at a tertiary comprehensive cancer center. Focus groups were conducted with parents whose children were age 10 years and older at the time of death. Potential participants were contacted by mail and telephone. Sessions were audiotaped and transcribed verbatim. The ATLAS.ti qualitative software program was used to identify and analyze dominant themes. Fourteen parents identified four major themes: standards of care, emotional care, communication, and social support. Bereaved parents discussed the challenges associated with institutional procedures and interpersonal aspects of care in anticipation of and following their child's death. The results of these personal narratives may be used to guide care plans and deliver pediatric palliative and end-of-life interventions.

Patients, family caregivers, and patient navigators: a partnership approach.

BACKGROUND: Navigation services may be strengthened by establishing a partnership between the patient, family/caregiver, and the navigator. Involvement of a patient's familial or social network in the navigation process would allow patient navigators to spend more time and resources with the subset of patients who do not have support from family and friends. The Partnership Approach evolves from combining the strength of a patient's existing social support and network with the delivery of navigation services. METHODS: To develop this novel approach, the Family and Caregiver Workgroup was convened at the American Cancer Society's National Leadership Summit. Individuals were asked to serve in this group due to their interest, research, or experience in family and caregiver issues. RESULTS: By the end of the Summit, the workgroup had achieved 3 major outcomes: 1) enhancement of current patient navigation services by building a partnership between the patient, family or primary caregivers, and navigators; 2) identification of a set of core functions that a family/caregiver could perform in a partnership; and 3) consensus on a set of metrics to use with caregivers and patients. Five major domains were selected to measure patient and/or caregiver outcomes: quality of life, satisfaction with care, social support, distress, and caregiver burden. Metrics appropriate for each domain were recommended. CONCLUSIONS: Integration of these domains and scales in current navigation services is needed to develop future research. Evidence from such research would help determine whether the Partnership Approach contributes to improved patient and caregiver outcomes.

Measuring the symptom burden of lung cancer: the validity and utility of the lung cancer module of the M. D. Anderson Symptom Inventory.

We conducted a study to establish the psychometric properties of a module of the M. D. Anderson Symptom Inventory (MDASI) developed specifically for patients with lung cancer (MDASI-LC). The MDASI measures 13 common "core" symptoms of cancer and its treatment. The MDASI-LC includes the 13 core MDASI symptom items and three lung cancer-specific items: coughing, constipation, and sore throat. MDASI-LC items were administered to three cohorts of patients with lung cancer undergoing either chemotherapy or chemoradiotherapy. Known-group validity and criterion (concurrent) validity of the MDASI-LC were evaluated using the Eastern Cooperative Oncology Group performance status and the 12-item Short-Form Health Survey. The internal consistency and test-retest reliability of the module were adequate, with Cronbach coefficient α-values of 0.83 or higher for all module items and subscales. The sensitivity of the MDASI-LC to changes in patient performance status (disease progression) and to continuing cancer treatment (effects of treatment) was established. Cognitive debriefing of a subset of participants provided evidence for content validity and indicated that the MDASI core items and three additional lung cancer-specific items were clear, relevant to patients, and easy to understand; only two patients suggested additional symptom items. As expected, the item "sore throat" was sensitive only for patients receiving chemoradiotherapy. The MDASI-LC is a valid, reliable, and sensitive symptom-assessment instrument whose use can enhance clinical studies of symptom status in patients with lung cancer and epidemiological and prevalence studies of symptom severity across various cancer types.

Launching an Electronic Patient-Reported Outcomes Initiative in Real-Time Clinical Practice.

Patient-reported outcomes play an essential role in improving care across the cancer continuum. This paper reports on the experience of a tertiary care center to standardize the use, collection, and reporting of patient-reported outcomes (PROs) in 10 disease-specific survivorship clinics. To minimize the burden of patients to complete surveys, an institutional committee with oversight on all patient surveys required an application be reviewed and approved before their distribution in a clinic. To begin collecting PROs, each clinic submitted an application tailored to its clinical operations, staffing, and scheduling characteristics. The dates for the submission of each application were staggered over a 2-year period, which contributed to a lack of uniformity in the project (ie, approval dates, start dates, collection and reporting of results). The delays were primarily due to the time and resources required to build the electronic version of the PRO survey into the institutional electronic medical record. To date, 6 of 10 survivorship clinics submitted applications, 5 were approved, and 4 launched the electronic MD Anderson Symptom Inventory (eMDASI) through the patient portal. Metrics collected between January 2019 and December 2020 for the thyroid, bone marrow transplant, genitourinary, and head and neck clinics indicated the numbers of eMDASIs sent to patients varied by clinic, with the lowest from the bone marrow transplant survivorship clinic (6) and the highest (746) in the thyroid Clinic. The total number of eMDASIs returned by the patients ranged from 2 (bone marrow transplant) to 429 (thyroid). Overall, patients' return rates of the eMDASI ranged from 33.3% to 57.7%. Several strategies were implemented to increase the delivery, submission, and completion of eMDASIs. Our findings indicate the integration and implementation of PROs in survivorship clinics are achievable. Further work is needed to enhance the ePROs web-based process to adequately compare PROs across diverse cohorts of cancer survivors .

Innovating the Personalization of Stratified Survivorship Care Pathways: Using a Cancer Data Ecosystem to Improve Care Access, Outcomes, Efficiency, and Costs.

New models of survivorship care are needed that improve outcomes for the growing number of cancer survivors, address the increasing complexity of their health needs, and deal with the shortage of clinicians and rising costs of this care. Technology can aid the delivery of personalized, stratified survivorship care pathways where the intensity of care, the care setting, and the providers required for that care vary with survivors' needs. Building a cancer data ecosystem of connected data streams that supports and learns from each patient can be used to streamline care, enhance efficiency, reduce costs, and facilitate research. This manuscript describes the input, analytics, and output components of the cancer data ecosystem that must be built and connected and also provides a real-world use case of how such a system could transform care in a large US comprehensive cancer center.

Prospective integration of cultural consideration in biomedical research for patients with advanced cancer: recommendations from an international conference on malignant bowel obstruction in palliative care.

In the setting of an international conference on malignant bowel obstruction as a model for randomized controlled trials (RCTs) in palliative care, we discuss the importance of incorporating prospective cultural considerations into research design. The approach commonly used in biomedical research has traditionally valued the RCT as the ultimate "way of knowing" about how to best treat a medical condition. The foremost limitation of this approach is the lack of recognition of the impact of cultural viewpoints on research outcomes. We propose that interest relevant to cultural viewpoints should be emphasized in conceptualizing and interpreting research questions, designs, and results. In addition to recognizing our cultural biases as individuals and researchers, we recommend two major shifts in designing and implementing RCTs: 1) inclusion of a multidisciplinary team of researchers to inform the diversity of perspectives and expertise brought to the research, and 2) use of mixed methods of inquiry, reflecting both deductive and inductive modes of inference.

Asking the community about cutpoints used to describe mild, moderate, and severe pain.

UNLABELLED: Clinical practice guidelines recommend that numeric rating scales be used to document the severity of perceived pain, yet patients and clinicians often opt to use simpler classification systems such as mild, moderate, or severe. To assess how well the numeric scales correlate with the tri-level classification system for describing pain severity, we conducted a subanalysis of a larger population-based study of pain management preferences. Our primary objective was to identify the numeric boundaries used by 287 adults to describe pain as mild, moderate, or severe. We examined differences in the means of the upper and lower limits for mild, moderate, and severe pain according to demographic characteristics and type of pain. Ranges reported for each pain level were 1.3 to 3.6 (mild), 4.3 to 6.5 (moderate), and 7.5 to 9.8 (severe). The primary finding was that "healthy" community adults rated the pain severity cutpoints much as patients with clinical pain did, 1 to 4 for mild, 5 to 6 for moderate, and 7 to 10 for severe. These results suggest that numeric rating scales can be used in clinical practice with both patients and community-dwelling adults. Our findings also support encouraging the general public to use a 0 to 10 scale to rate their pain intensity. PERSPECTIVE: Methods used to describe numeric cutpoints for mild, moderate, and severe pain were applied to community adults. Having standard categories to describe pain severity might increase clinicians' confidence in using a numeric scale to make treatment decisions. Further studies of cutpoint methodology and its clinical importance are warranted.

An urban community's preferences for hypothetical outcomes of analgesic pain treatment.

We assessed preferences of urban residents regarding hypothetical treatment outcomes related to analgesic use to determine how well subjects understood the severity of the outcomes, describe community preferences for these outcomes, and identify predictors of preferences. In a cross-sectional telephone survey, we obtained mean ratings for hypothetical outcomes that included two dimensions of clinical pain (pain severity and potential side effects): A=moderate pain, three side effects; B=mild pain, three side effects; C=moderate pain, one side effect. We focused on 111 respondents who rated Outcome A, moderate pain with three side effects, as the worst condition (the logical choice). Being Spanish speaking predicted preferences across treatment Outcomes A and B. Spanish-speaking subjects and those in fair to poor health tended to view all three outcomes more negatively than other respondents. Knowledge of public preferences can help clinicians better understand factors that influence treatment choices and may help them motivate their patients to adhere to analgesic regimens.

Cancer Prevention in the Survivorship Setting.

OBJECTIVES: To describe how nurses can use risk reduction and health promotion activities to facilitate surveillance of late effects and secondary cancers in long-term cancer survivors. DATA SOURCES: Literature review on survivorship, nursing practice, cancer prevention, and survivorship; articles published in peer-reviewed scientific journals; and Web-based or professional organization resources. CONCLUSION: Appropriate participation in screening activities, early detection of cancer, and further advances in treatment have contributed to the rise in cancer survivors. A demand for nurses with clinical experience and competence in survivorship care will follow. IMPLICATIONS FOR NURSING PRACTICE: Oncology nurses have an essential role in providing safe and high-quality care throughout the survivorship experience, which can contribute to better long-term outcomes.

Pain education for underserved minority cancer patients: a randomized controlled trial.

PURPOSE: Previous studies found that African American and Hispanic cancer patients are at risk for undertreatment of pain. We evaluated the efficacy of a pain education intervention for underserved minority patients. PATIENTS AND METHODS: Ninety-seven underserved African American and Hispanic outpatients with cancer-related pain were enrolled onto a randomized clinical trial of pain management education. The patients in the education group received a culture-specific video and booklet on pain management. The control group received a video and booklet on nutrition. A research nurse met with each patient to review the materials. We measured changes in pain intensity and pain-related interference 2 to 10 weeks after the intervention, as well as changes in quality of life, perceived pain control, functional status, analgesics, and physician pain assessments. RESULTS: Physicians underestimated baseline pain intensity and provided inadequate analgesics for more than 50% of the sample. Although the ratings for pain intensity and pain interference decreased over time for both groups, there was no statistically significant difference between groups. Pain education did not affect quality of life, perceived pain control, or functional status. African American patients in the education but not the control group reported a significant decrease in pain worst ratings from baseline to first follow-up (P < .01), although this decrease was not maintained at subsequent assessments. CONCLUSION: Brief education had limited impact on pain outcomes for underserved minority patients, suggesting that more intensive education for patients and interventions for physicians are needed.

Celebrating ONS's 40th anniversary and its commitment to cultural competency, diversity, and inclusiveness.

Today, we all have been taught that cultural competence is a valuable tool in providing patient-centered care. However, this concept was not considered a standard of oncology nursing practice when the Oncology Nursing Society (ONS) began. It was not regarded as a critical component of patient safety, satisfaction, or quality care. In fact, in the 1970s, the importance of providing culturally competent care was virtually nonexistent in our nation's government policies, regulatory standards, academic curriculum, or professional practice. 
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Changing Nursing Practice in Survivorship Care With Clinical Decision Tools.

The paradigm shift to include survivorship care as part of the cancer care continuum underscores the critical need for a change in nursing practice. One way to ensure that change in practice is delivered in a safe and efficient manner is through the use of clinical decision tools (CDTs). Such tools can be used to increase relevant knowledge and skills of nurses and patients. Despite the widespread recognition of their value, CDTs to educate providers on cancer survivors' care are limited and, when available, often are not used. Clinical practice algorithms were developed for disease-specific survivorship clinics in a cancer academic center. This article reviews the conceptual framework of the survivorship algorithms, describes the application of the algorithms in multidisciplinary disease-specific survivorship clinics, and discusses the implementation strategies used to promote clinicians' adoption and implementation of the algorithms. At a Glance • The authors found that algorithms can be successfully used as clinical decision tools(CDTs) to deliver survivorship care. • Algorithms and other CDTs are powerful tools to enhance professional practice. • Additional studies are needed to assess their effect on clinical practice and survivor outcomes.

Perceptions of analgesic use and side effects: what the public values in pain management.

In this population-based telephone survey, we evaluated the attitudes of 302 adults toward analgesic use and related side effects. Over half (68%) reported prior experience with 2 or more side effects. Vomiting (34%), confusion (32%), and nausea (17%) were ranked as the worst side effects. Exploratory cluster analysis grouped responses to 6 questions about willingness to use analgesics into two categories. Participants in Cluster I (n=106), "Conservatives," were less willing to take analgesics for pain as compared to those in Cluster II (n=153), "Liberals." Univariate analysis found Hispanics, women, those less affluent or educated, and those with prior side-effect experience were more likely to be Conservative. Experience with side effects (OR=1.3) and being female (OR=2.1) were the strongest predictors of conservative cluster membership. To achieve better pain outcomes, clinicians and patients must identify factors that contribute to conservative decision-making about analgesic use and side effect management.

Managing breakthrough pain: a clinical review with three case studies using oral transmucosal fentanyl citrate.

Pain management begins with the use of appropriate assessment tools and includes planning, implementing, and evaluating a comprehensive treatment plan that addresses persistent and breakthrough pain. Persistent pain is present to some degree throughout the day and primarily is controlled with around-the-clock medication. However, it often is accompanied by episodes of short, intermittent pain, also known as breakthrough pain. From a clinical perspective, breakthrough pain is characterized as a transitory exacerbation of pain that occurs on a background of otherwise stable pain in a patient receiving chronic opioid therapy. Breakthrough pain typically is moderate to severe in intensity and can be triggered by various activities (incident pain), be entirely unpredictable (idiopathic pain), or occur toward the end of around-the-clock medication (end-of-dose failure). Breakthrough pain occurs in as many as 86% of patients with cancer even when persistent pain is well controlled. Clinicians and patients should address persistent and breakthrough pain as distinct entities to accurately assess it and develop appropriate pain management plans. This article provides an overview of the clinical characteristics of persistent and breakthrough pain and, through the use of three case studies, illustrates practical strategies for managing breakthrough pain effectively.

Care, compassion, and communication in professional nursing: art, science, or both.

Debate continues as to whether nursing is a science, art, or a combination of the two. Given the recent growing emphasis in the current healthcare environment to deliver patient-centered care, the art of nursing and its impact on patient outcomes is being re-examined. The current article discusses a case narrative to provide a venue for self-reflection in nursing practice.

Oncology nurses and indoor tanning: stylish or risky behavior?

Being tan has become a social norm, and some nurses engage in that widely accepted lifestyle. Mounting evidence of the increased risk to melanoma and nonmelanoma skin cancers associated with indoor tanning supports the need for nurses to integrate skin cancer education, counseling, and referrals into routine practice. The current article presents an overview of the risks associated with indoor tanning, discusses its acceptance as a social norm, and offers strategies to support oncology nurses in changing the widespread trend.