Breast cancer is the leading cause of cancer mortality among Haitian women, yet cancer patients in Haiti face numerous barriers and lack access to routine oncology services. In Haiti’s current health care system, patients must assume all the responsibility to not only seek initial cancer care when diagnosed, but also coordinate their follow-up care across the cancer continuum. This stress on the patient, coupled with a lack of general education about screening services, and a fragmented health system adds to the heartbreak of a cancer diagnosis. For vulnerable patients that are ill, this burden is far too great. For many women with metastatic breast cancer (MBC), returning for a follow-up appointment often requires missing work and a day’s pay. In rural settings, the likelihood of patients returning to the clinic after the initial visit to confirm diagnosis, establish stage of disease, or initiate appropriate treatment is low due to system-related, societal, cultural, financial or psychological barriers.
Zanmi Lasante (ZL), a Partners In Health’s (PIH) sister organisation in Haiti, supports 12 public health facilities, and is the largest health care provider in Central Haiti, serving 1.3 million people. In 2013, PIH/ZL opened University Hospital of Mirebalais (HUM), a 300-bed public teaching hospital serving a population with generally limited or no access to quality health care. Based on reviews by Haiti’s Ministry of Health, the cancer programme at HUM is the most comprehensive in Haiti.
HUM receives thousands of patients daily through its outpatient clinics and emergency services. Due to the high volume of late-stage cancer patients, the burden of cancer is felt through many departments in the hospital. HUM not only sees a large volume of patients but also a wide spectrum of cancers that are not treatable due to lack of infrastructure, technology, medicines, or trained staff. Despite this unmet need, on average, over 300 patients are treated every year and curative and palliative treatment options are offered. Over 75% of cancer patients receiving treatment at HUM are breast cancer patients.
"In this difficult job, a great satisfaction is to see a metastatic cancer patient, often after having lost hope, rise again and get much better with appropriate care. These patients are worth fighting for."
Through the SPARC grant awarded in October 2019, ZL launched a new project focused on MBC patients to improve the support provided through their treatment journey and to reduce the number of patients that discontinue treatment. The main aims of the project were to:
Patient navigators were recruited and trained to provide support in care coordination to MBC patients on treatment, chemotherapy, hormone therapy, and medications for symptom management, with a goal to ensure that 90% or more of follow-up appointments were attended by patients. The most vulnerable patients were selected based on criteria that included financial, social and emotional factors.
In addition to the support provided through these patient navigators, education sessions were also developed to improve the health literacy among MBC patients. Health literacy was measured during these educational sessions via feedback and discussions with care providers, physicians, and nurses.
The mental health and wellness of MBC patients was also addressed by holding individual and group psychosocial discussions, and additional support was given by providing MBC patients and their families with transportation fees. All of the selected MBC patients were screened for depression at least once during treatment, following confirmation of diagnosis and disease staging. Patients were subsequently referred to psychologists if necessary.
Despite political unrest and the COVID pandemic, the team was able to meet and exceed the goals of the project. In the first stage of this project, two patient navigators were recruited and trained, and 50 patients were initially recruited to benefit from the navigation programme. Gradually during the project, the enrolment increased to 104 MBC patients. The HUM team confirmed that as a result of better accompaniment, MBC patients were less likely to drop out of cancer care, resulting in an overall retention rate of over 90%. The initial target was an increase in the retention rate from 50% to 70%, however, this was clearly surpassed as a result of the interventions introduced.
“While I was at this project, it helped me a lot so that I would not miss an appointment. They call me to find out how I am and remind me of my appointment date. The support I received at the hospital was very helpful. I would like to do it again.”
Patient supported by ZL
To improve health literacy, the team established bi-weekly educational sessions with MBC patients. Over 93% of the MBC patients enrolled benefitted from 58 education sessions throughout the project. Patients’ knowledge acquisition throughout the duration of the project was assessed, and the team then focused subsequent sessions on topics where further education was needed. During each support group and educational session, patients were given the opportunity to discuss treatment-related issues, such as coping with cancer or stress during political turmoil, among other topics. To balance the challenges of group sessions due to political instability and COVID, the HUM team also held individual educational sessions during regular follow-up visits and increased interactions with the patient navigators onsite, or via telephone when these were not possible.
In addition, before each educational session group psychosocial sessions were conducted with the HUM oncology team and led by a psychologist, social worker and patient navigators. The team recorded that nearly 90% of the patients enrolled in the programme were referred to a psychologist and received additional support. While all patients were screened for depression, follow-up support was found necessary to particularly support the mental health of patients with advanced stage cancer.
The patient navigators also had an impact on the quality of care that the oncology team is able to provide to patients more broadly, not only for MBC patients enrolled in the program. As a result of the successful outcomes of this project, ZL was able to retain the two navigators trained for this project in the hospital and open the patient navigation programme to all MBC patients arriving for treatment.
(Information from the project description and context is compiled from the final SPARC report)