Exploring Unmet Needs from an Online Metastatic Breast Cancer Support Group: A Qualitative Study

Abstract

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.

Exploring access to care from the perspective of patients with breast cancer: A qualitative study

“…Extant research shows that patients with cancer often have unmet psychosocial needs. 19 , 31 Moreover, issues such as financial hardship, insurance, and transportation (referred to as “little big things” by patients with ovarian cancer) 10 represented critical access to care concerns for patients in this study as well. Providers, support staff, family/friends, and peers were all important sources of social and instrumental support in navigating the healthcare system and mitigating barriers.…”

“…The importance of information among patients was paramount, which is consistent with previous findings of high health information needs in patients with breast cancer. 19 , 30 Participants received and sought diagnosis and treatment information from a variety of sources, including healthcare providers, peers, and the internet. While patients rely on providers for information personal to their own care, they are also proactive information seekers and self‐advocates thanks to the increased accessibility of information and peer groups on the internet.…”

“…A growing literature on access to breast cancer care as perceived and experienced by patients have confirmed common access challenges such as patient‐provider communication gaps, insurance hassles, financial hardships, uncoordinated care, information deficits, and transportation problems. 14 , 15 , 16 , 17 , 18 , 19 Perceived bias, lack of confidence, and competing obligations are further impediments to care that are prominent among underserved communities. 16 , 18 , 20 Distrust of the healthcare system is common across racial and ethnic minority groups and persists across the breast cancer care continuum.…”

The Global Status of Universal Health Coverage and Oncology Care

“…Despite UHC, there are disparities rooted in both provider and patients' behavior at the time of care (41). Unmet needs for information on treatment and prognosis, inadequate cost coverage of care, and inadequate support for other living costs are contributing factors to poor prognosis in cancer patients, especially in those with advanced stages (42).…”

Improving quality of life and symptom experience in patients with metastatic breast cancer: A systematic review of supportive care interventions

“…These include, but are not limited to, psychological, financial, social and physical domains. This so called ‘collateral damage’ is significantly distressing to patients and associated with poorer health behaviors, illness management and psychological wellbeing 9–11 . The consideration of issues associated with survivorship as part of routine care was a key recommendations of the third ESO‐ESMO International Consensus Guidelines for Advanced Breast Cancer in 2015 12 …”