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 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.

Provider-patient communication about cost of care: Results from a national patient education program.

2013 ◽  
Vol 31 (15_suppl) ◽  
pp. 9578-9578 ◽  
Author(s):  
Ivy A. Ahmed ◽  
Allison Harvey ◽  
Marni Amsellem ◽  
Thomas J. Smith
Keyword(s):  
Health Care ◽  
Health Care Professionals ◽  
Cancer Care ◽  
Health Care Team ◽  
Cost Of Care ◽  
Care Team ◽  
Cancer Support ◽  
Support Organizations ◽  
National Patient ◽  
The Cost

9578 Background: A 2010 NIH study indicates direct cancer care expenditures will reach $158 billion in the U.S. by 2020, impacting millions of Americans. The cost of insurance for a family of 4 has increased from $6000 (2000) to over $16,000 (2011). Medical debt is a significant cause of personal bankruptcy, even if insured. The financial realities posed by costs associated with cancer care greatly complicate a cancer diagnosis. The most recent American College of Physicians Ethics Manual recommends all parties must interact honestly, openly, and fairly. (Snyder L, et al. Ann Int Med 2012, p86) This analysis explores the occurrence and value of patient-provider communication surrounding costs associated with care in a national survey of those affected by cancer. Methods: From 2011-12, 505 individuals attending Frankly Speaking About Cancer: Coping with the Cost of Care workshops completed a survey assessing experiences about the costs of cancer care. This is a Cancer Support Community national evidence-based educational program. All attendees (n=708) were eligible to complete survey. Results: Most attendees (71.3%) responded. The majority (62.4%) were people with cancer/survivors; the remainder included spouses/partners, family members, and 8.7% were health care professionals. Most (80.8%) were Caucasian, and averaged 57.2 years. Of those with cancer, 89.9% were insured at diagnosis. 59.4% reported no one on their health care team initiated a discussion about the financial aspects of their care. Included in this figure, 22.7% actively sought information from health care team, and 36.7% received no information about cost. When topic was initiated, it was by social workers (16.2%), physicians (12.3%), nurses (6.3%) or financial specialists (8.2%). When information was provided, 72.1% found it somewhat or very useful. Also, regardless of provider discussion, respondents independently sought resources for managing costs, such as other patients (44.2%), the Internet (41.5%), and patient support organizations (38.1%). Conclusions: Patients want financial information but do not receive it. These data highlight the need and value of providers initiating a dialogue about the cost of cancer care with patients.

scholarly journals Building Community-Based Awareness and Navigating Breast Cancer and Palliative Care Programme in Kumasi, Ghana

2018 ◽  
Vol 4 (Supplement 2) ◽  
pp. 151s-151s
Author(s):  
C. Asoogo ◽  
F. Aitpilla ◽  
F.M. Hoyte-Williams ◽  
F. Awittor ◽  
B. Awuah ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Health Care ◽  
Social Media ◽  
Palliative Care ◽  
Metastatic Breast Cancer ◽  
Patient Navigation ◽  
Metastatic Breast ◽  
Community Based ◽  
Structured Program

Introduction: Breast cancer is the leading cancer in Ghana and most patients report with advanced disease. Patients face many challenges in trying to access health care and support; these are particularly relevant in the case of metastatic diseases. A structured program would provide a means of rapid referral for definitive diagnosis, treatment and palliative care, where necessary. Aim: To establish community-based structured patient network, navigation and breast health awareness programs that will reduce delays in accessing care, improve the quality of end-of-life care among patients with metastatic breast cancer. Strategy: We established a community-based patient network program comprising 15 community-based patient navigators in the Kumasi metropolis and a social media networking and navigation platform made up of a team of experts and community navigators, breast cancer survivors and patients with advanced breast cancer to share experiences and express/address concerns. We assessed the breast cancer database of Komfo Anokye Teaching Hospital to establish the number, location and density of patients. Community navigator's established direct in-person contacts with the patients to offer support explain and enroll them into the social media network and navigation platform. The project team carried out various awareness campaigns including talks to organized groups, house-to-house and media campaigns. Program/Policy process: We engaged with the Ghana Health Service, local government authorities as well as traditional and community leadership in the design and implementation of the program, to encourage community ownership from the onset. These key stakeholders were also pivotal in organizing durbars, talks to organized groups and community meetings to reach out to the people. Recruitment of volunteers within the communities will ensure that patient navigation has the best chance to continue within these communities beyond the grant period. The project coordinator and her team were available for consultation and also paid periodic visits to the communities. Outcomes: A structured program to enhance referral and access to care; a community-based patient navigation system to recruit and provide support to patients with advanced breast cancer; a social media platform to provide guide and immediate support to patients with metastatic breast cancer; and improved awareness of breast cancer and its prevention in the communities. Conclusions: The program improved the health care system in the communities and also expands outreach to persons living with metastatic breast cancer to provide support and improve treatment outcomes and quality of life. It also encourages patients to visit hospitals for treatment through ease of access to medical care and informed treatment choices and palliative care.

How can palliative care specialists best integrate into multidisciplinary oncology care for patients with metastatic breast cancer?

2016 ◽  
Vol 34 (26_suppl) ◽  
pp. 182-182
Author(s):  
Tara Laura Kaufmann ◽  
Melissa F Miller ◽  
Joanne S. Buzaglo ◽  
Arif Kamal
Keyword(s):  
Breast Cancer ◽  
Palliative Care ◽  
Metastatic Breast Cancer ◽  
Metastatic Cancer ◽  
Metastatic Breast ◽  
Current Evidence ◽  
Comprehensive Cancer Center ◽  
Cancer Center ◽  
Cancer Support ◽  
Patient Reported

182 Background: Current evidence for palliative care/oncology integration derives from cancers with either very short prognoses or relatively limited treatment options (e.g. pancreas). Little is know about the role of palliative care in metastatic breast cancer, where prognosis may be measured in years and the treatment option portfolio is continuously expanding. Methods: The Cancer Support Community Metastatic Breast Cancer Experience Registry is a voluntary, patient-reported, online registry of patient experiences with cancer. We evaluated data reported by patients from March 2013 to March 2014. The registry includes demographic information and data regarding physical, emotional, social, and financial distress measured using Likert scales. We calculated descriptive statistics and Pearson’s chi-squared. Results: We evaluated 599 patients. The sample median age was 56; 93% were White; 61% had a bachelor’s degree or higher Median time from diagnosis of metastatic cancer was 3 years. Regarding physical distress, over 50% reported “moderate” or higher issues with sleep, nutrition and eating, and fatigue. Depression and anxiety prevalence increased by 15% and 20%, respectively, from pre-treatment to post-treatment. Among social distress, 25% felt alone, 62% worried about burdening their family, and over 50% limited contact with others. 30% or higher desired more assistance with: diagnostic and treatment information, making decisions, managing symptoms and emotions, and managing disruptions to family and work life. Respondents were more likely to have been asked about distress if they received part or all of their care at an academic or comprehensive cancer center (p < 0.001) or treatment through a clinical trial (p = 0.012). Conclusions: We identified a high prevalence of unmet needs across several supportive care domains. These areas of distress should be a targeted focus of palliative care and oncology integration to improve the care of patients with metastatic breast cancer.

A Behavior-Modification, Clinical-Grade Mobile Application to Improve Breast Cancer Survivors' Accountability and Health Outcomes

2018 ◽  
pp. 1-11 ◽  
Author(s):  
Renee Stubbins ◽  
Tiancheng He ◽  
Xiaohui Yu ◽  
Mamta Puppala ◽  
Chika F. Ezeana ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Health Care ◽  
Cancer Survivors ◽  
Behavior Modification ◽  
Technology Use ◽  
Breast Cancer Survivors ◽  
Health Care Team ◽  
Care Team ◽  
Feasibility Trial ◽  
System Usability Scale

Purpose Only 34% of breast cancer survivors engage in the recommended level of physical activity because of a lack of accountability and motivation. Methodist Hospital Cancer Health Application (MOCHA) is a smartphone tool created specifically for self-reinforcement for patients with cancer through the daily accounting of activity and nutrition and direct interaction with clinical dietitians. We hypothesize that use of MOCHA will improve the accountability of breast cancer survivors and help them reach their personalized goals. Patients and Methods Women with stages I to III breast cancer who were at least 6 months post–active treatment with a body mass index (BMI) greater than 25 kg/m2 were enrolled in a 4-week feasibility trial. The primary objective was to demonstrate adherence during weeks 2 and 3 of the 4-week study period (14 days total). The secondary objective was to determine the usability of MOCHA according to the system usability scale. The exploratory objective was to determine weight loss and dietitian-participant interaction. Results We enrolled 33 breast cancer survivors who had an average BMI of 31.6 kg/m2. Twenty-five survivors completed the study, and the average number of daily uses was approximately 3.5 (range, 0 to 12) times/day; participants lost an average of 2 lbs (+4 lbs to −10.6 lbs). The average score of usability (the second objective) was 77.4, which was greater than the acceptable level. More than 90% of patients found MOCHA easy to navigate, and 84% were motivated to use MOCHA daily. Conclusion This study emphasizes the importance of technology use to improve goal adherence for patients by providing real-time feedback and accountability with the health care team. MOCHA focuses on the engagement of the health care team and is integrated into clinical workflow. Future directions will use MOCHA in a long-term behavior modification study.

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