scholarly journals EXPLORING UNMET NEEDS FROM AN ONLINE METASTATIC BREAST CANCER SUPPORT GROUP: A QUALITATIVE STUDY

The Breast ◽  
2021 ◽  
Vol 59 ◽  
pp. S56
Author(s):  
Aravinthan Kadravello ◽  
Cheng-Har Yip ◽  
Seng Beng Tan ◽  
Gwo-Fuang Ho ◽  
Ranjit Kaur Pritam Singh
The Breast ◽  
2019 ◽  
Vol 48 ◽  
pp. S37-S38
Author(s):  
Mary-Gloria Anulika Orji ◽  
Runcie C.W. Chidebe ◽  
Khadijat Banwo-Fatai ◽  
Tochukwu C. Orjiakor

Medicina ◽  
2021 ◽  
Vol 57 (7) ◽  
pp. 693
Author(s):  
Aravinthan Kadravello ◽  
Seng-Beng Tan ◽  
Gwo-Fuang Ho ◽  
Ranjit Kaur ◽  
Cheng-Har Yip

Background and Objective: Despite the increasing treatment options for patients with metastatic breast cancer (MBC), unmet needs remain common, especially in low and middle-income countries where resources are limited and MBC patients face many challenges. They often join support groups to cope with their unmet needs. Currently, many MBC patients connect with each other via online support group in view of the constant availability of support and rapid information exchange. The objective of this study is to determine the unmet needs of women with MBC from an online support group. Material and Methods: Messages in an online support group of twenty-two MBC patients over a period of three years from August 2016 till August 2019 were thematically analyzed. Results: Three themes were generated, (1) unmet information needs (2) unmet financial needs (3) unmet support needs. Women needed information on side effects of treatment, new treatment options and availability of clinical trials. Although Malaysia has universal health care coverage, access to treatment remains a major challenge. When treatment was not available in the public hospitals, or waiting lists were too long, women were forced to seek treatment in private hospitals, incurring financial catastrophe. Insufficient private insurance and inadequate social security payments force many women to consider stopping treatment. Women felt that they were not getting support from their clinicians in the public sector, who were quick to stop active treatment and advise palliation. On the other hand, clinicians in the private sector advise expensive treatment beyond the financial capability of the patients. Women with families also face the challenge of managing their family and household in addition to coping with their illness. Conclusions: There is a need for healthcare professionals, policy makers, and civil society to better address the needs of MBC patients through patient-centered, multidisciplinary and multi-organizational collaboration.


2019 ◽  
Vol 37 (27_suppl) ◽  
pp. 186-186
Author(s):  
Elana Plotkin ◽  
Marianne Gandee ◽  
Lorna Lucas

186 Background: An estimated 250k Americans are currently living with MBC. While breast cancer is a high-profile disease receiving significant public funding, patients with metastatic breast cancer face unique challenges. ACCC seeks to expand the conversation to address gaps between early & metastatic disease and improve the management of MBC in the community setting. Communication challenges that cancer care teams face with MBC patients include: using a tailored and thoughtful approach, balancing hope and realism, patient engagement during conversations, incorporating principles of shared decision making, patient financial concerns, and family/caregiver involvement. Methods: An environmental scan was completed of nationally available resources. A survey on MBC Communication strategies was administered in a variety of oncology provider settings from Dec. 2018-Jan 2019. Results: Patient psychosocial needs were identified as the top challenge for working with MBC patients vs. Stage 1-3. 57% reported difficulty managing patient expectations, 55% reported patient financial concerns. While 66% of cancer programs offer a general breast cancer support group, only 27% offer a Stage 4 group. 59% of respondents rely on casual conversations with patients to assess what they want, only 34% ask patients to define what quality of life would mean for them. 33% document goals in the EMR. Over 150 free resources specific to MBC were categorized from diagnosis through hospice, resulting in a curated online library that clinicians can use with their patients. Conclusions: This patient population should be given specialized care to address their unique diagnosis and improve communications with their care team. The ACCC Resource Library gives both low and highly resourced programs access to more supportive care tailored to metastatic breast cancer.


2013 ◽  
Vol 90 (1) ◽  
pp. 88-95 ◽  
Author(s):  
Woohyun Yoo ◽  
Ming-Yuan Chih ◽  
Min-Woo Kwon ◽  
JungHwan Yang ◽  
Eunji Cho ◽  
...  

2018 ◽  
Vol 4 (Supplement 3) ◽  
pp. 10s-10s
Author(s):  
Runcie C.W. Chidebe

Purpose Through the Union for International Cancer Control and Pfizer Oncology SPARC MBC grant, Project PINK BLUE–Health & Psychological Trust Centre implemented the Breast Cancer Navigation and Palliative Program with strategic activities focused on metastatic breast cancer with the goal of “empower[ing] women at risk of, or living with advanced breast cancer and to reduce [the] incidence of stage III or IV breast cancer.” The project established Nigeria's first patient navigation program, which trained 138 health workers and social workers across the six area councils of Abuja and connected 116 breast health facilities, 58 in Abuja and another 58 across Nigeria—diagnostic centers and hospitals—in a Web-based navigation map application. The program was designed to train only 18 patient navigators for Abuja only; however, we trained 44 patient navigators from National Hospital Abuja, Enugu, and Kebbi states who are currently working on establishing Breast Cancer Navigation and Palliative Programs in their respective states. Trained oncology nurse navigators are providing optimum palliative care and navigation to patients across the mapped health facilities in Abuja. Whereas 72 institutions have been engaged through diverse partnerships, 27 resources were produced, including videos, documents, and a palliative/navigation book for health care workers. Ten ECHO palliative care trainings were organized for nurses and pain doctors, with an additional eight in-person workshops on palliative care and patient navigation and five patient support group meetings. Seventy-two news articles were published, including for TV, radio, and in interviews. Methods The program used training of nurses, cancer survivors and nurses to become patient navigators at National Hospital Abuja and across the six area councils of Abuja. Currently, navigators in Niger State and Enugu state have also received training on patient navigation, and more patients with cancer have been tracked and observed during their cancer journeys in Nigeria. Results The program has transited to lead national advocacy at Nigeria’s parliament for the establishment of the National Institute on Cancer Research and Treatment and has also establish such initiatives as Abuja’s first cancer support group and patient-led advocacy and campaign. Several patients with metastatic breast cancer were navigated through their journey with cancer. Conclusion Patients with metastatic breast cancer need more support to live a quality life; more than just pain medication. They need someone to listen to them and caregivers who show their care and love. Patient navigation is an emerging area of oncology and there is a need to support the patient navigators so that they may devote more time to its effects. AUTHOR’S 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 . Runcie C.W. Chidebe Travel, Accommodations, Expenses: Jansen and Jansen Consulting or Advisory Role: Novartis Pharmaceuticals


2001 ◽  
Vol 45 (3) ◽  
pp. 195-198 ◽  
Author(s):  
Ali Montazeri ◽  
Soghra Jarvandi ◽  
Shahpar Haghighat ◽  
Mariam Vahdani ◽  
Akram Sajadian ◽  
...  

Sign in / Sign up

Export Citation Format

Share Document