"How can a woman live without having a breast?": challenges related to mastectomy in Ethiopia.

BACKGROUND: Although mastectomy is the standard treatment modality for breast cancer patients in Ethiopia, our previous study revealed that one in five patients do not receive the recommended procedure, half due to patient refusal or lack of returning to the hospital. Therefore, this study aimed to explore reasons for refusing mastectomy and identify challenges among breast cancer patients in Ethiopia. METHODS: An explorative qualitative study was conducted in four hospitals located in the towns of Woliso, Butajira, Hossana, and Assela. A total of 14 in-depth interviews (IDIs) and eight focus group discussions (FGDs) were held with breast cancer patients, patient relatives, and health professionals. Four semi-structured interview guides were used to facilitate the IDIs and FDGs. All recorded IDIs and FGDs were transcribed and translated verbatim and entered in NVivo 12 software. Emerging ideas were categorised and explained using an inductive content analysis approach. RESULTS: Our participants reported that particularly elderly and very young women refuse to have mastectomy. The main reasons identified in this study were summarised into six themes: (i) fear of the surgical procedure, (ii) religious beliefs and practice, (iii) utilisation of traditional treatments, (iv) in relation to having a baby and breastfeeding their children (young patients often request to remove only the lump, leaving their breast tissue intact), (v) lack of awareness about the disease, and (vi) sociocultural factors and advice from the community that influence women, since breasts are considered an attribute of femininity, beauty, and motherhood. In addition, knowing someone who died after mastectomy emerged as a main reason for not having breast cancer surgery. CONCLUSIONS: High refusal rate for mastectomy has direct implication on increased breast cancer mortality. Hence, expansion of radiotherapy service is instrumental to initiate breast-conserving surgery as an alternative surgical procedure, especially for young women with early-stage breast cancer. Involving religious leaders, traditional healers, and breast cancer survivors could be an effective strategy to persuade newly diagnosed breast cancer patients. Addressing individual patient psychosocial needs and preferences may substantially improve retention of breast cancer patients in the health system.

A Qualitative Study on Psychosocial Challenges of Patients With Cancer in Ethiopia Using the Social-Ecological Model.

Cancer diagnosis and treatment can be physically arduous, disrupting patients' social and work lives. Understanding the extent of these problems is key to addressing patients' needs, but specific psychosocial challenges have not yet been well studied in resource-limited settings. A qualitative study was conducted in the capital and two regions of Ethiopia with the aim of exploring psychosocial challenges among cancer patients. A total of 14 in-depth interviews (IDIs) and 16 focus group discussions (FGDs) were done with cancer patients, health professionals, community representatives, and religious leaders. Four separate interview guides were used to facilitate the interviews and discussions. All transcribed documents, field notes, and reflexive memos were entered into NVivo 12 software, and deductive thematic analysis using the social-ecological model was applied to summarize the main findings. At an individual level, emotional distress, suicidal risk, denial, and refusal of treatment were identified immediately after diagnosis while hopelessness, feeling depressed, and fear of death were commonly reported psychosocial challenges during the course of treatment. Involvement of family members in major treatment decisions was recognized at an interpersonal level. Our result also revealed that cancer patients had strong social support from family members and close friends. In the community, traditional medicine and religious rituals were considered an alternative treatment for cancer. The findings indicate that counselling and psychoeducation are crucial for cancer patients, family members, and close friends. Awareness creation programmes should be delivered through collaboration with religious leaders and traditional healers.

Impact of the Integrative Oncology Scholars Program on Oncology Providers' Key Knowledge of Dietary Supplements and Antioxidants for Providing Evidence-based Oncology Care.

Dietary supplements are commonly used among cancer survivors. Oncology providers rarely receive training about dietary supplements. We evaluated whether e-learning modules could improve oncology providers' dietary supplement knowledge. Oncology providers participated in the National Cancer Institute funded Integrative Oncology Scholars (IOS) program. We used posttest readiness assurance tests (RAT) to measure knowledge acquisition from modules. One cohort completed a pre and posttest RAT to assess change in knowledge. Multivariate linear regression models adjusted for gender, race, profession, and years in practice were used to determine if these characteristics were associated with posttest RAT performance and change in pre to posttest RAT scores. Scholars (N = 101) included 86% (N = 87) females; age 44 ± 10 years; 72% (N = 73) Non-Hispanic White; years in practice mean range 11-15 ± 10. There were 37 physicians, 11 physician assistants, 23 nurses, 21 social workers, 2 psychologists, 4 pharmacists, and 2 physical therapists. The posttest dietary supplement and antioxidant RAT scores for all Scholars were 67 ± 18% and 71 ± 14%. In adjusted models there were no significant associations between dietary supplement and antioxidant posttest RAT scores with Scholar characteristics. Change in RAT scores for dietary supplement and antioxidants were 25% ± 23 and 26% ± 27 (P < 0.0001). In adjusted models, there were no significant predictors of change in dietary supplement RATs. For antioxidant RATs, profession was associated with change in scores (P = 0.021). Improvement in Scholar's test scores demonstrate the IOS program can significantly increase oncology providers' knowledge of dietary supplements and antioxidants.

Burden of Cancer and Utilization of Local Surgical Treatment Services in Rural Hospitals of Ethiopia: A Retrospective Assessment from 2014 to 2019.

BACKGROUND: Global cancer estimations for Ethiopia announced 77 352 new cases in 2020 based on the only population-based registry in Addis Ababa. This study characterizes cancer patients in rural Ethiopia at 8 primary and secondary hospitals between 2014 and 2019. PATIENTS AND METHODS: All clinically or pathologically confirmed cancer cases that were diagnosed between 1 May 2014 and 29 April 2019 were included. A structured data extraction tool was used to retrospectively review patients' charts and descriptive analysis was done. RESULTS: A total of 1298 cancer cases were identified, of which three-fourths were females with a median age of 42 years. Breast (38%) and cervical (29%) cancers were the most common among females, while prostate (19%) and oesophageal cancers (16%) were the most common among males. Only 39% of tumors were pathologically confirmed. Nearly two-thirds of the cases were diagnosed at an advanced stage. Surgery was the only accessible treatment option for more than half of the cancer patients, and systemic treatment (except endocrine) was rarely available. One in 5 patients did not receive the recommended surgical procedure, half due to patient refusal or lack of the patient returning to the hospital. CONCLUSION: The pattern of cancer diagnoses in rural hospitals shows an exceptionally high burden in women in their middle-ages due to breast and cervical cancers. Advanced stage presentation, lack of pathology services, and unavailability of most systemic treatment options were common. The surgery was offered to nearly 60% of the patients, showing the significant efforts of health workers to reduce sufferings.

Addressing a critical need for caregiver support in neuro-oncology: development of a caregiver navigation intervention using eSNAP social resource visualization.

Informal caregivers are key to oncology care, but often have unmet needs, leading to poor psychological and physical health outcomes. Comprehensive, proactive caregiver support programs are needed. We describe the development of a support intervention for caregivers of persons with brain tumors. The intervention uses a caregiver navigator to help participants identify and capitalize on existing social support resources captured using a web-based tool (eSNAP) and connects participants to existing formal services. We describe the iterative development process of the manualized intervention with particular focus on the caregiver navigator sessions. The process included review of the literature and published patient navigation programs, expert and stakeholder review, and study team member review. Quantitative and qualitative data were captured from the first 15 participants randomized to receive the intervention, enrolled from February 2020 to December 2020. Four participants dropped from the study, 9 completed at least 7 modules, and 8 participants completed all 8. Quantitative and qualitative data were collected primarily from those who completed the intervention; data suggest caregivers were satisfied with the intervention and found it helpful. Our intervention is one of the first theory-based caregiver support interventions to include caregiver navigation in neuro-oncology. We use best-practice guidelines for design, including extensive stakeholder feedback. COVID-19 may have impacted recruitment and participation, but some preliminary data suggest that those able to engage with the intervention find it helpful. Data collection is ongoing in a larger trial. If effective, caregiver navigation could be a model for future interventions to ensure caregiver support.

Training cancer caregiver navigators: experiences from implementing the eSNAP and caregiver navigator intervention.

Patient navigation is increasingly common in cancer care. While navigation programs often involve informal family caregivers, few navigation interventions specifically target the family caregiver. We developed the eSNAP and Caregiver Navigator Intervention to help cancer family caregivers identify and capitalize on informal and formal social support resources. While the skill set for patient navigators may be adequate for supporting caregivers, other skills and areas of knowledge expertise are needed. In addition, sparse documentation of navigator training best practices creates further challenges for dissemination and implementation. Our goal is to describe the education and training of cancer caregiver navigators within key competencies used to prepare and support navigators to deliver our manualized intervention. Nationally recognized navigation competencies, related to developing a sensitivity to ethical, cultural, and professional issues, knowledge development, skills development, and practice-based learning, were identified and adapted. Performance goals were identified within each competency. Training activities were selected to support competency development. Based on adult learning theories, we emphasize multiple learning strategies, including experiential learning and critical reflection. Two caregiver navigators engaged in initial training between December, 2019 and February, 2020. Initial training was supervised by study leadership, who coordinated with experts and stakeholders. Navigators completed initial training. We describe lessons learned. To ensure that navigators are well-equipped to provide effective services, evidence-based training programs that include navigation and protocol-specific competencies are needed. Given the lack of detailed training programs in the literature, we created a flexible, multimodal learning approach that other teams may adopt.

A randomized wait-list controlled trial of a social support intervention for caregivers of patients with primary malignant brain tumor.

BACKGROUND: Informal family caregivers constitute an important and increasingly demanding role in the cancer healthcare system. This is especially true for caregivers of patients with primary malignant brain tumors based on the rapid progression of disease, including physical and cognitive debilitation. Informal social network resources such as friends and family can provide social support to caregivers, which lowers caregiver burden and improves overall quality of life. However, barriers to obtaining needed social support exist for caregivers. To address this need, our team developed and is assessing a multi-component caregiver support intervention that uses a blend of technology and personal contact to improve caregiver social support. METHODS: We are currently conducting a prospective, longitudinal 2-group randomized controlled trial which compares caregivers who receive the intervention to a wait-list control group. Only caregivers directly receive the intervention, but the patient-caregiver dyads are enrolled so we can assess outcomes in both. The 8-week intervention consists of two components: (1) The electronic Social Network Assessment Program, a web-based tool to visualize existing social support resources and provide a tailored list of additional resources; and (2) Caregiver Navigation, including weekly phone sessions with a Caregiver Navigator to address caregiver social support needs. Outcomes are assessed by questionnaires completed by the caregiver (baseline, 4-week, 8-week) and the cancer patient (baseline, and 8-week). At 8 weeks, caregivers in the wait-list condition may opt into the intervention. Our primary outcome is caregiver well-being; we also explore patient well-being and caregiver and patient health care utilization. DISCUSSION: This protocol describes a study testing a novel social support intervention that pairs a web-based social network visualization tool and resource list (eSNAP) with personalized caregiver navigation. This intervention is responsive to a family-centered model of care and calls for clinical and research priorities focused on informal caregiving research. TRIAL REGISTRATION: clinicaltrials.gov , Registration number: NCT04268979 ; Date of registration: February 10, 2020, retrospectively registered.

Psychosocial issues for adolescent and young adult cancer patients in a global context: A forward-looking approach.

The first decade of adolescent and young adult (AYA) oncology psychosocial care and research (2005-2015) was driven by a normative, developmental framework that assumed a generalizable life experience for AYAs that is distinct from both younger children and older adults. As we proceed through a second decade, new considerations emerge regarding diversity of life experiences as occurring within and influenced by a complex global context. The purpose of this paper is to review and provide commentary on the impact of global and contextual conditions on AYAs. We expound upon the effects of precarious labor conditions, changing timetables and priorities for developmental tasks, sexual and gender plurality, and expanding cultural diversity. We discuss the implications of social genomics and technology and social media for enhancing precision psychosocial medicine. To build a forward-looking approach, this paper calls for tailored, multilevel treatments that consider variability of AYAs within the social and global contexts in which they live.

Development and evaluation of a six-day training program in supportive oncology research.

OBJECTIVE: Early career investigators have few opportunities for targeted training in supportive oncology research. To address this need, we developed, implemented, and evaluated an intensive, six-day workshop on methods in supportive oncology research for trainees and junior faculty across multiple disciplines. METHOD: A multidisciplinary team of supportive oncology researchers developed a workshop patterned after the clinical trials workshop offered jointly by the American Society of Clinical Oncology and American Association of Cancer Research. The curriculum included lectures and a mentored experience of writing a research protocol. Each year since 2015, the workshop has accepted and trained 36 early career investigators. Over the course of the workshop, participants present sections of their research protocols daily in small groups led by senior researchers, and have dedicated time to write and revise these sections. Primary outcomes for the workshop included the frequency of completed protocols by the end of the workshop, a pre- and posttest assessing participant knowledge, and follow-up surveys of the participants and their primary mentors.ResultOver three years, the workshop received 195 applications; 109 early career researchers were competitively selected to participate. All participants (109/109, 100%) completed writing a protocol by the end of their workshop. Participants and their primary mentors reported significant improvements in their research knowledge and skills. Each year, participants rated the workshop highly in terms of satisfaction, value, and likelihood of recommending it to a colleague. One year after the first workshop, most respondents (29/30, 96.7%) had either submitted their protocol or written at least one other protocol.Significance of resultsWe developed a workshop on research methods in supportive oncology. More early career investigators applied for the workshop than capacity, and the workshop was fully attended each year. Both the workshop participants and their primary mentors reported improvement in research skills and knowledge.

Cancer in adolescents and young adults: Who remains at risk of poor social functioning over time?

BACKGROUND: The objective of the current study was to examine social functioning among adolescents and young adults (AYAs) within the first 2 years after a cancer diagnosis and compare their scores with population norms and identify trajectories of social functioning over time and its correlates. METHODS: A multicenter, longitudinal study was conducted among 215 AYA patients with cancer aged 14 to 39 years. A total of 141 patients completed a self-report measure of social functioning within the first 4 months of diagnosis and again at 12 months and 24 months later. RESULTS: AYA patients with cancer were found to have significantly worse social functioning scores around the time of diagnosis (52.0 vs 85.1; P<.001), at the 12-month follow-up (73.1 vs 85.1; P<.001), and at the 24-month follow-up (69.2 vs 85.1; P<.001) when compared with population norms. Significant improvements in social functioning from baseline to the 12-month follow-up were observed; however, social functioning levels remained stable thereafter. Among participants, 9% demonstrated consistently high/normal social functioning, 47% demonstrated improved social functioning, 13% were found to have worsening social functioning, and 32% demonstrated consistently low social functioning. AYA patients with cancer who had consistently low social functioning were more often off treatment at the time of follow-up, reported more physical symptoms and higher levels of distress at baseline and follow-up, and perceived less social support at baseline compared with the other 3 groups. CONCLUSIONS: Although improved over time, social functioning still was found to be compromised 24 months after the primary diagnosis. Nearly one-third of these patients remain at risk of poor social functioning. Reducing physical symptoms and psychological distress and enhancing social support by interventions during the period after treatment may potentially help these young survivors to better reintegrate into society. Cancer 2017;123:2743-51. © 2017 American Cancer Society.

Adolescent and young adult (AYA) lymphoma survivors report lower health-related quality of life compared to a normative population: results from the PROFILES registry.

BACKGROUND: Trying to simultaneously achieve developmental milestones and cope with a life-threatening disease may place adolescents and young adults (AYAs) at risk for impaired health-related quality of life (HRQoL) later in life. The aim of this study was to examine differences in HRQoL between AYA lymphoma survivors and a normative population and to determine sociodemographic, clinical and long-term symptom-related factors associated with HRQoL. MATERIAL AND METHODS: This study was part of a longitudinal, population-based survey among lymphoma survivors diagnosed between 1999 and 2012. The AYA survivor sample (18-39 years at time diagnosis) was compared to a sex- and age-matched normative population on HRQoL (EORTC-QLQ-C30) and psychological distress (HADS). Multiple linear regression analyses were conducted to determine factors associated with HRQoL among survivors. RESULTS: One hundred and ninety-eight AYA lymphoma survivors (58%) responded to the study invitation. Compared to an age- and sex-matched normative population (N = 380), significantly and clinically relevant poorer HRQoL was observed for AYA lymphoma survivors in seven specific domains of HRQoL: physical, role, cognitive, emotional, social functioning, fatigue and financial difficulties (all p < 0.05). In addition, AYA lymphoma survivors less often had a spouse/partner and more often had a lower educational level compared to the normative population. Linear regression analyses showed that being unemployed, female gender, having one or more comorbid conditions, high levels of fatigue and psychological distress were most strongly associated with HRQoL. CONCLUSIONS: These findings identify specific domains of life in which cancer has a significant and long-term impact for AYA lymphoma survivors. Future investigations are needed to identify and test administrations and timing of psychosocial support interventions having potential to reduce long-term late effects in specific HRQoL domains and promote function and adaptability after cancer treatment.

Social well-being among adolescents and young adults with cancer: A systematic review.

BACKGROUND: A cancer diagnosis during adolescence or young adulthood may negatively influence social well-being. The existing literature concerning the social well-being of adolescents and young adults (AYAs) with cancer was reviewed to identify gaps in current research and highlight priority areas for future research. METHODS: A systematic review of the scientific literature published in English from 2000 through 2014 was performed. Eligible studies included patients and survivors diagnosed between the ages of 15 to 39 years that reported on social well-being domains in the City of Hope Cancer Survivor Quality of Life Model. Each article was reviewed for relevance using a standardized template. A total of 253 potential articles were identified. After exclusions, a final sample of 26 articles identified domains of social well-being that are believed to be understudied among AYAs with cancer: 1) educational attainment, employment, and financial burden; 2) social relationships; and 3) supportive care. Articles were read in their entirety, single coded, and summarized according to domain. RESULTS: AYAs with cancer report difficulties related to employment, educational attainment, and financial stability. They also report problems with the maintenance and development of peer and family relationships, intimate and marital relationships, and peer support. Supportive services are desired among AYAs. Few studies have reported results in reference to comparison samples or by cancer subtypes. CONCLUSIONS: Future research studies on AYAs with cancer should prioritize the inclusion of underserved AYA populations, more heterogeneous cancer samples, and comparison groups to inform the development of supportive services. Priority areas for potential intervention include education and employment reintegration, and social support networks.

Next steps for adolescent and young adult oncology workshop: An update on progress and recommendations for the future.

Each year, 70,000 adolescents and young adults (AYAs) between ages 15 and 39 years in the United States are diagnosed with cancer. In 2006, a National Cancer Institute (NCI) Progress Review Group (PRG) examined the state of science associated with cancer among AYAs. To assess the impact of the PRG and examine the current state of AYA oncology research, the NCI, with support from the LIVESTRONG Foundation, sponsored a workshop entitled "Next Steps in Adolescent and Young Adult Oncology" on September 16 and 17, 2013, in Bethesda, Maryland. This report summarizes the findings from the workshop, opportunities to leverage existing data, and suggestions for future research priorities. Multidisciplinary teams that include basic scientists, epidemiologists, trialists, biostatisticians, clinicians, behavioral scientists, and health services researchers will be essential for future advances for AYAs with cancer.

Adoption and cancer survivors: Findings from a learning activity for oncology nurses.

BACKGROUND: To the authors' knowledge, little is known regarding the rate at which cancer survivors successfully adopt a child or about their experiences negotiating a costly, and perhaps discriminatory, process regarding the prospective parent's health history. The current study describes the results of a learning activity in which nurses contacted an adoption agency to learn more about the process for survivors with the goal of helping nurses provide patients with accurate information for making a well-informed decision regarding adoption. METHODS: Training program participants identified an adoption agency (local, state, or international) and conducted an interview using a semistructured guide. After the interview, participants created a summary of responses to the questions. The authors examined responses to each question using qualitative content analysis. RESULTS: A total of 77 participants (98% completion rate) across 15 states provided a summary. Responses were distributed across the following categories: adoption costs, steps required for survivors seeking adoption, challenges for survivors seeking adoption, birth parents' reservations, and planned institutional changes to increase adoption awareness. The majority of respondents reported improving their knowledge of adoption and cancer, increased challenges for survivors, and the need to educate patients concerning the realities of adoption policies. The need for a letter stating the survivor was 5 years cancer free was identified as a significant obstacle for survivors. CONCLUSIONS: Nurses are charged with following practice guidelines that include recommendations for appropriate reproductive health referrals. Cancer survivors would benefit from a health care provider who can provide education and concrete information when patients are making a decision about fertility and adoption.

Adolescent and Young Adult (AYA) Oncology in the United States: A Specialty in Its Late Adolescence.

Over the last 30 years, it has become apparent that oncology patients ages 15 to 39 have not reaped the same rewards of improved survival that we have seen in younger and older patients. As a result, in 2006 the Adolescent and Young Adult (AYA) Oncology Progress Review Group convened and examined the factors that impact the care of the 70,000 new cases per year (approximately 7% of all new cases) in the United States and published their findings. The reasons for inferior survival gains are of course multiple and include the settings in which patients are cared for, clinical trial enrollment, insurance coverage, varied treatment of sarcomas, varied treatment of acute lymphoblastic leukemia, the psychosocial impact of cancer and cancer survivorship. A new area of a yet-to-be completely defined subspecialty was born out of this meeting: AYA oncology. As a medical community we realized that these patients do not fit neatly into the pediatric nor adult world and, therefore, require a unique approach which many individuals, oncology centers, advocacy groups, and cooperative trial groups have started to address. This group of dedicated providers and advocates has made strides but there is still much work to be done on the local, national, and international level to make up for shortcomings in the medical system and improve outcomes. We review key components of AYA cancer care in 2015 that all providers should be aware of, how far we have come, where this movement is headed, and the obstacles that continue to stand in the way of better cure rates and quality of life after cure for this unique group of patients. Like an adolescent maturing into adulthood, this movement has learned from the past and is focused on moving into the future to achieve its goals.

Screening for psychosocial distress: a national survey of oncology social workers.

Oncology social workers are the primary providers of psychosocial care for cancer patients, thus they are well positioned to implement and oversee psychosocial distress screening. A national survey of members of the Association of Oncology Social Work was conducted to examine screening knowledge, attitudes, behaviors, and perceived competency. The findings indicated that most participants screened for psychosocial distress using a standardized instrument and identified institutional and individual barriers to implementing screening. Analyses revealed that social workers who perceived patient benefits from screening and were knowledgeable about guidelines were significantly more likely to implement screening procedures and use a standardized instrument.