Remote Symptom Monitoring to Enhance the Delivery of Palliative Cancer Care in Low-Resource Settings: Emerging Approaches from Africa.

This paper brings together researchers, clinicians, technology developers and digital innovators to outline current applications of remote symptom monitoring being developed for palliative cancer care delivery in Africa. We outline three remote symptom monitoring approaches from three countries, highlighting their models of delivery and intended outcomes, and draw on their experiences of implementation to guide further developments and evaluations of this approach for palliative cancer care in the region. Through highlighting these experiences and priority areas for future research, we hope to steer efforts to develop and optimise remote symptom monitoring for palliative cancer care in Africa.

NOHA: A Promising Biomarker for Determining Estrogen Receptor Status Among Patients With Breast Cancer in Resource-Constrained Settings.

Purpose: Challenges to breast cancer control in low-and middle-income countries exist because of constrained access to care, including pathology services. Immunohistochemistry (IHC)-based estrogen receptor (ER) analysis is limited-nonexistent because of few and inadequately staffed and equipped pathology laboratories. We have identified N-hydroxy-L-Arginine (NOHA) as a blood-based biomarker to distinguish ER status in US patients with breast cancer.

How a Digital Case Management Platform Affects Community-Based Palliative Care of Sub-Saharan African Cancer Patients: Clinician-Users' Perspectives.

Background: Symptom control among cancer patients is a Tanzanian public health priority impacted by limited access to palliative care (PC) specialists and resources. Mobile Palliative Care Link (mPCL), a mobile/web application, aims to extend specialist access via shared care with local health workers (LHWs) with the African alliative care utcome cale (POS) adapted for regular, automated symptom assessment as a core feature.

Objective: The aim of the study is to assess clinicians' attitudes, beliefs, and perceptions regarding mPCL usability and utility with their patients within a government-supported, urban Tanzanian cancer hospital setting.

Long-Term Adaptation Among Adolescent and Young Adult Children to Familial Cancer Risk.

Background: It is important to examine adolescent and young adult (AYA) children's long-term psychosocial and behavioral adaptation to disclosure of maternal BRCA-positive carrier status (BRCA+) to inform approaches for familial cancer risk communication, education, and counseling.

Methods: Mothers underwent BRCA genetic testing 1 to 5 years earlier. Group differences in AYAs' self-reported outcomes were analyzed by maternal health and carrier status, and child age and sex.

Community oncologists' perceptions and utilization of large-panel genomic tumor testing.

Purpose: Large-panel genomic tumor testing (GTT) is an emerging technology with great promise but uncertain clinical value. Previous research has documented variability in academic oncologists' perceptions and use of GTT, but little is known about community oncologists' perceptions of GTT and how perceptions relate to clinicians' intentions to use GTT.

Methods: Community oncology physicians (N = 58) participating in a statewide initiative aimed at improving access to large-panel GTT completed surveys assessing their confidence in using GTT, attitudes regarding the value of GTT, perceptions of barriers to GTT implementation, and future intentions to use GTTs.

Patients' Expectations of Benefits From Large-Panel Genomic Tumor Testing in Rural Community Oncology Practices.

Unlabelled: Large-panel genomic tumor testing (GTT) is an emerging technology that promises to make cancer treatment more precise. Because GTT is novel and complex, patients may have unrealistic expectations and limited knowledge of its benefits. These problems may limit the clinical value of GTT, but their prevalence and associated factors have not been explored.

mPalliative Care Link: Examination of a Mobile Solution to Palliative Care Coordination Among Tanzanian Patients With Cancer.

Purpose: Late-stage cancer patient symptom control is a national priority in Tanzania. Mobile health promises to improve the reach of a limited pool of palliative care specialists through interprofessional, community-based care coordination. This work assessed the effectiveness of a smartphone- or Web-based app, mPalliative Care Link (mPCL), to extend specialist access via shared data and communication with local health workers.

A Mobile App to Improve Symptom Control and Information Exchange Among Specialists and Local Health Workers Treating Tanzanian Cancer Patients: Human-Centered Design Approach.

Background: Improving access to end-of-life symptom control interventions among cancer patients is a public health priority in Tanzania, and innovative community-based solutions are needed. Mobile health technology holds promise; however, existing resources are limited, and outpatient access to palliative care specialists is poor. A mobile platform that extends palliative care specialist access via shared care with community-based local health workers (LHWs) and provides remote support for pain and other symptom management can address this care gap.

Cancer genetic health communication in families tested for hereditary breast/ovarian cancer risk: a qualitative investigation of impact on children's genetic health literacy and psychosocial adjustment.

Children's literacy about the genetics of late-onset hereditary breast/ovarian cancer (HBOC) often develops through conversations with parents about BRCA gene testing and adults' cancer diagnoses. These conversations may promote early understanding of HBOC, but the long-term impact on children's psychosocial adjustment remains unclear. We investigated cancer genetic health communication in BRCA-tested families to consider benefits, risks, and moderating influences on children's understanding and well-being.

Association of patient navigation with care coordination in an Lynch syndrome screening program.

Lynch syndrome (LS) identification leads to improved health outcomes. Universal tumor screening (UTS) facilitates LS identification among colorectal cancer (CRC) and uterine cancer (UC) cases; institutional management affects screening program implementation and outcomes. There has been limited study of institutional UTS program care coordination needs, including patient navigation of genetic counseling referrals.

Examination of the Patient-Focused Impact of Cancer Telegenetics Among a Rural Population: Comparison with Traditional In-Person Services.

Background: Telecommunication models promise to improve access to cancer genetic counseling. Little is known about their impact among the geographically underserved. This work examined knowledge and emotional outcomes and attitudes/beliefs regarding cancer telegenetic services (via live-interactive videoconferencing) in Maine.

Breast Cancer Knowledge, Beliefs, and Screening Practices among Women Seeking Care at District Hospitals in Dar es Salaam, Tanzania.

Background: Limited disease awareness among women may impact breast cancer stage-at-diagnosis in Tanzania, reducing survival. This study assessed breast cancer knowledge, screening practices, and educational preferences among outpatients at Tanzanian government-supported hospitals.

Methods: A convenience sample of women was surveyed regarding (1) knowledge/beliefs of breast cancer etiology, risk factors, symptoms, treatment, (2) early detection knowledge/practice, and (3) educational preferences.

Acceptability of telemedicine and other cancer genetic counseling models of service delivery in geographically remote settings.

This work examined acceptability of cancer genetic counseling models of service delivery among Maine residents at risk for hereditary cancer susceptibility disorders. Pre-counseling, participants ranked characteristics reflecting models of care from most to least important including: mode-of-communication (in-person versus telegenetics), provider level of training (genetic specialty versus some training/experience), delivery format (one-on-one versus group counseling), and location (local versus tertiary service requiring travel). Associations between models of care characteristic rankings and patient characteristics, including rural residence, perceived cancer risk, and perceived risk for a hereditary cancer risk susceptibility disorder were examined.

Management of genetic syndromes predisposing to gynecologic cancers.

Women with personal and family histories consistent with gynecologic cancer-associated hereditary cancer susceptibility disorders should be referred for genetic risk assessment and counseling. Genetic counseling facilitates informed medical decision making regarding genetic testing, screening, and treatment, including chemoprevention and risk-reducing surgery. Because of limitations of ovarian cancer screening, hereditary breast and ovarian cancer-affected women are offered risk-reducing bilateral salpingo-oophorectomy (BSO) between ages 35 and 40 years, or when childbearing is complete.

Association of age, gender, and race with intensity of end-of-life care for Medicare beneficiaries with cancer.

Purpose: To measure intensity of end-of-life (EOL) care for Medicare cancer patients and variations in care by age, gender, and race.

Patients And Methods: This retrospective cohort analysis of Medicare claims (20% sample) examined 235,821 Medicare Parts A and B fee-for-service patients dying with poor-prognosis cancers between 2003 and 2007. Logistic regression models quantified associations between care intensity and age, gender, and race.

Disparities in hospice care among older women dying with ovarian cancer.

Background: Timely hospice referral is an essential component of quality end-of-life care, although a growing body of research suggests that for patients with various types of cancer, hospice referrals often occur very late in the course of care, and are marked by sociodemographic disparities. However, little is known about the ovarian cancer patient population specifically. We examined the extent and timing of hospice referrals in ovarian cancer patients over age 65, and the factors associated with these outcomes.

Building a tool to identify risk for Lynch syndrome among individuals presenting for screening colonoscopy.

The goal of this work was to build and pilot-test a user-friendly Lynch syndrome risk assessment tool among individuals presenting for routine screening colonoscopy. Participants included adults presenting to a private practice-based, open-access endoscopy unit. Working with health literacy experts and gastroenterologists, and based on established criteria, we developed a simplified tool to assess Lynch syndrome risk, pre-procedure.

Colorectal cancer screening pilot program for underserved women in Cumberland County, Maine.

Over 800 Maine residents will be diagnosed with colorectal cancer (CRC) this year, and nearly 300 will die from the disease. While CRC screening can reduce these rates, it is only among insured populations that screening rates exceed 50%. This project aimed to reduce barriers to, and increase rates of CRC screening among underinsured and uninsured women, ages 50 years and over, residing in Cumberland County, Maine.

Hereditary breast and ovarian cancer: referral source for genetic assessment and communication regarding assessment with nongenetic clinicians in the community setting.

Purpose: To examine referral source to cancer genetic services; communication of results of genetic evaluation to clinicians; role of clinicians in postcounseling management; and use of alternative information sources after cancer genetic risk assessment/counseling in the community setting.

Methods: Retrospective telephone survey.

Setting: A community/private hospital-based cancer genetic counseling service.

Perceptions of high-risk care and barriers to care among women at risk for hereditary breast and ovarian cancer following genetic counseling in the community setting.

Data are limited regarding barriers to care among women, with or at risk for hereditary breast and ovarian cancer (HBOC), following genetic counseling in the community setting. Using a telephone survey, we retrospectively addressed perceptions of post-genetic counseling medical care and barriers to care among 69 at-risk women from the non-academic setting. Of these, all agreed that following cancer screening recommendations was better than not following them; none felt recommendations were too difficult to follow; all believed screening would help keep them healthy; 57% believed screening would prevent cancer.

Cancer prevention and screening practices among women at risk for hereditary breast and ovarian cancer after genetic counseling in the community setting.

The context is that there are limited data regarding the management of women at risk for hereditary breast and ovarian cancer (HBOC) after genetic counseling in the community setting. The objective of the study is to examine the cancer screening and prevention behaviors among women with diverse risk factors for HBOC, counseled through a non-academic genetic counseling service. This study was designed as a retrospective telephone survey.