scholarly journals Assessment of Clinical and Psychological Needs of Patients With Metastatic Breast Cancer: Challenges and Gaps in Meeting Their Needs in Uganda

2018 ◽  
Vol 4 (Supplement 3) ◽  
pp. 11s-11s
Author(s):  
Henry Ddungu ◽  
Edward Kumaketch ◽  
Eva Namisango
Keyword(s):  
Breast Cancer ◽  
Health Care ◽  
Metastatic Breast Cancer ◽  
Supportive Care ◽  
Family Caregivers ◽  
Metastatic Breast ◽  
Psychological Needs ◽  
Cost Of Care ◽  
Care Providers ◽  
Care Services

Purpose Uganda has one of the highest age-standardized incidence rates for breast cancer (38.3/100,000) occurring among women age 35 to 45 years. The disease is associated with increased biomedical and psychological demands on affected women and their families. Clinical and supportive care services are offered to patients with metastatic breast cancer (MBC) to meet their needs and improve survival and quality of life. However, the existence of challenges and barriers to health care access affect the satisfaction of the needs of patients with MBC and imply that available services cannot meet every clinical and psychological need these patients. No previous assessment has been done in Uganda of the clinical and psychological needs of patients with MBC. The aim of the current study was to generate data that can be used to increase awareness of the unmet clinical and psychological needs of patients with MBC and their families to inform advocacy strategies for supportive care services in Uganda. Methods We conducted interviews, in-depth interviews, focus group discussions, and document review. Results Patients with MBC (n = 67), survivors (n = 185), clinical providers (n = 24), family (n = 134), and VHT (n = 12) participated in this work. The patient’s most important needs include physical and daily living needs (relieving pain, 85.69%; nutrition and diet, 83.69%; wound management, 80.69%; help when tired, 74.6%; help with house cores, 73.19%); health system, information, and patient support (treatment with dignity, 86.6%; pleasant environment, 83.6%; sensitivity to feelings, 80.6%; counseling, 79.1%; choice of cancer specialists, 77.6%; treatment plan, 76.1%; respect for a patient’s opinion, 74.6%); and psychological (close family concerns, 79.1%; advice on faith, 79.6%; comforting when sad, 74.6%; positive outlook, 73.3%; how to disclose, 71.6%). Long waiting times, out-of-stock medicines, inadequate hospital amenities, family exclusion during patient review conversations, caregiver burnout, cost of care, limited funding, and spiritual, legal, and human resource shortages were needs and challenges identified by survivors, family caregivers, clinical providers, and policymakers. Polices on supportive care for patients with MBC are also unclear. Conclusion There exists a mismatch between patients with MBC, survivors, and health care providers with regard to knowledge of some of the needs of patients with MBC, particularly clinical-related information needs. Dialogue between patients with MBC, survivors, family caregivers, clinical providers, and VHTs is recommended to harmonize knowledge and perceptions of the needs of patients with MBC. AUTHORS' DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST The following represents disclosure information provided by authors of this manuscript. All relationships are considered compensated. Relationships are self-held unless noted. I = Immediate Family Member, Inst = My Institution. Relationships may not relate to the subject matter of this manuscript. For more information about ASCO's conflict of interest policy, please refer to www.asco.org/rwc or ascopubs.org/jco/site/ifc . No COIs from the authors.

scholarly journals Experiences of Patients Diagnosed and Living With Metastatic Breast Cancer in Kumasi, Ghana: A Lesion to Learn From Low-Middle Income Country

2018 ◽  
Vol 4 (Supplement 2) ◽  
pp. 8s-8s
Author(s):  
C. Asoogo ◽  
M. Hoyte-Williams ◽  
B. Dwobeng ◽  
D. Sam ◽  
E. Amankwa-Frimpong
Keyword(s):  
Breast Cancer ◽  
Health Care ◽  
Metastatic Breast Cancer ◽  
Cancer Patients ◽  
Support Groups ◽  
Metastatic Breast ◽  
Care Providers ◽  
Breast Cancer Patients ◽  
Financial Changes ◽  
Fear And Anxiety

Background: Breast cancer is a leading cause of death among women in Ghana. About 50% of cases seen at the oncology directorate are breast cancer-related, and 85% of these cases present in advanced stage with very poor prognosis and high mortality. Objectives: To explore and describe the experiences of patients diagnosed and living with metastatic breast cancer. Methods: A cross sectional descriptive study design was used to involved breast cancer patients at Komfo Anokye Teaching Hospital who comes from various social and ethnic groups as well as geographically distinct areas from the vast territory of the Ashanti region and the Northern part of Ghana. Convenient sampling was used to select 120 participants for the study using semistructured questionnaire. Data of their social and demographic background and experiences living with metastatic breast cancer were obtained after seeking informed consent. Results: The study revealed that 12% of participants diagnosed and living with metastatic breast cancer experience loneliness and devastated, 22% experience fear and anxiety, while 35% experience stigma from both family and the society. Moreover, feeling of anger and hopelessness also account for 15%, 11% experience financial changes, while 5% of participants experience both physical and emotional pain with their diagnosis and treatment. Recommendations were made for policy makers, health care professionals, and other researchers. These include the need for intensified metastatic breast cancer awareness campaigns, educating health care providers on the need for professional counseling on metastatic breast cancer and the need to organized support groups, so that patients could contact each other. Emphasis should be placed on training of nurses to deal with issues relating to metastatic breast cancer. Conclusion: Generally, fear and anxiety, stigma, feeling of loneliness, devastated, anger and hopelessness, emotional and physical pain and financial changes are the variables that explain the experiences of women diagnosed and living with metastatic breast cancer. Some support groups has shown an improvement, therefore efforts to raise public awareness of metastatic breast cancer should be continued. The current study became imperative to fill this identified gap and improve health interventions and health outcomes for metastatic breast cancer patients in future.

Cancer-related distress and unmet needs among members of a metastatic breast cancer registry.

2014 ◽  
Vol 32 (26_suppl) ◽  
pp. 118-118
Author(s):  
Joanne S. Buzaglo ◽  
Melissa F Miller ◽  
Anne Morris ◽  
Allison Harvey ◽  
Mitch Golant
Keyword(s):  
Breast Cancer ◽  
Health Care ◽  
Metastatic Breast Cancer ◽  
Metastatic Breast ◽  
Health Care Team ◽  
Cost Of Care ◽  
Care Team ◽  
Comprehensive Cancer Center ◽  
Community Based ◽  
Cancer Support

118 Background: An estimated 155,000 people are living with metastatic breast cancer (MBC) in the US. Emotional distress among people living with MBC is common; yet, little is known about the patient experience and distress screening. Methods: Since March 2013, the Cancer Support Community has registered 909 people living with MBC to the Cancer Experience Registry, an online initiative that is designed to raise awareness about the psychosocial impact of cancer. 599 registrants responded to questions about cancer related distress. This sample was 99% female, 91% Caucasian, and 69% with a college degree and median age 56. Median time since MBC diagnosis was 3 years. Results: The top sources of distress (% rated seriously or very seriously concerned) were: (1) worry about the future (44%); (2) fatigue (39%); (3) health insurance or money worries (38%). 49% reported fatigue was ‘quite a bit’ or ‘very much’ disruptive in their life and 46% reported intrusive ideation about the financial cost of care. Factors that were independently associated with greater overall distress included younger age (p<0.001), higher comorbidity (p<0.001), lower income (p=0.001). 43% of respondents were never asked about distress by their health care team. Those who received all or part of their treatment in an academic or comprehensive cancer center were significantly more likely to be asked about distress versus those receiving treatment anywhere else (65% vs. 50%, p=0.002). Among those who were asked about distress (n=340), 62% received referrals to manage distress within their health care system, and 19% at a community-based organization; 47% reported their health care team helped coordinated distress-related care. 20% of those asked about distress never received referrals for managing it. Conclusions: These findings support the need for integrated supportive care services and better side-effect management. Disturbingly, 20% of patients who asked for referrals never received them and only 19% of patients were referred to community-based organizations for treating their distress where these services are often provided at low or no-cost. There is an on-going need for coordinated care that integrates programs and services across health care systems.

scholarly journals Value assessment in oncology drugs: funding of drugs for metastatic breast cancer in Canada

2018 ◽  
Vol 25 ◽  
pp. 161 ◽  
Author(s):  
J. Lemieux ◽  
S. Audet
Keyword(s):  
Breast Cancer ◽  
Health Care ◽  
Metastatic Breast Cancer ◽  
Health Care Providers ◽  
Clinical Benefit ◽  
Survival Benefit ◽  
Health Benefit ◽  
Metastatic Breast ◽  
Value Assessment ◽  
Care Providers

Background Life expectancy for women with metastatic breast cancer has improved since the early 2000s, in part because of the introduction of novel therapies, including chemotherapy, hormonal therapy, and targeted agents. However, those treatments can come at a cost for the patient (short- and long-term toxicities from treatment) and at a financial cost for the health care system. Given the increase in the number of costly anticancer agents being introduced into the clinical setting, the American Society of Clinical Oncology (asco) and the European Society for Medical Oncology (esmo) have developed a system to quantify the value of new cancer treatments in terms of benefit, toxicities, and costs.MethodsIn our value-assessment analysis, we included drugs that were funded in Canada between 2012 and 2017 for metastatic breast cancer. We reviewed the clinical benefit of those agents (survival, progression, quality of life), their costs, their value according to the asco and esmo value frameworks, and their assessments from the pan- Canadian Oncology Drug Review [pcodr (in Canada, except Quebec)] and the Institut national d’excellence en santé et en services sociaux [iness (in Quebec)].Results Drugs funded in Canada showed variation in their asco net health benefit scores and esmo magnitude of clinical benefit scores, but all had a cost-effectiveness ratio greater than $100,000 per quality-adjusted life–year. The strength and magnitude of the clinical benefit (for example, overall survival benefit vs. progression-free survival benefit) was not necessarily associated with a higher value score.Conclusions Although great progress has been made in developing value frameworks, use of those frameworks has to be refined to help patients and health care providers make informed decisions about the benefit of novel cancer therapies and to help policymakers make decisions about the societal benefit of funding those therapies.

scholarly journals Screening for new primary cancers in patients with metastatic breast cancer: a provincial analysis of the Choosing Wisely Canada recommendations

2019 ◽  
Vol 26 (3) ◽  
Author(s):  
M. Tesch ◽  
K. Laing
Keyword(s):  
Breast Cancer ◽  
Overall Survival ◽  
Metastatic Breast Cancer ◽  
Newfoundland And Labrador ◽  
Metastatic Cancer ◽  
Significant Proportion ◽  
Metastatic Breast ◽  
Primary Care Providers ◽  
Choosing Wisely ◽  
Care Providers

Introduction Patients with metastatic cancer have a decreased life expectancy, and with screening and surveillance for new primary cancers, they run the risk of immediate harm with little chance of any benefit. Choosing Wisely Canada therefore recommends that such investigations be avoided in patients with metastatic disease.Methods We examined cancer screening practices in a subset of patients with metastatic cancer in Newfoundland and Labrador. Patients with metastatic breast cancer seen at the provincial cancer clinic during 2014–2016 were identified from the Newfoundland and Labrador Cancer Registry. For each patient, we assessed whether any one or a combination of screening mammography, Pap (Papanicolaou) test, flexible sigmoidoscopy or colonoscopy, or fecal immunohistochemical test were performed at any point after the diagnosis of metastatic disease.Results Of 305 patients with metastatic breast cancer, 114 (37.4%) underwent at least 1 screening investigation (mean: 2.92 investigations per screened patient). The most common screening investigations were mammography (n = 197) and Pap test (n = 107). Primary care providers ordered most of the screening investigations (70%); oncology specialists ordered 14%, and other specialists, 12%. Median overall survival for patients with breast cancer after a diagnosis of metastatic disease was 42 months, with a 5-year overall survival of 35.9%.Conclusions A significant proportion of patients with metastatic breast cancer in Newfoundland and Labrador are still undergoing screening for new primary malignancies, which is discordant with oncology guidelines from Choosing Wisely Canada. Increased education strategies are needed if the Choosing Wisely Canada recommendations are to be implemented into routine clinical practice.

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