Palliative care needs assessment of metastatic breast cancer patients in West Jakarta
Context
Breast cancer is one of the most common cancers diagnosed (88% in females) at the Dharmais Hospital National Cancer Centre (NCC), West Jakarta. Out of 6155 in-patient breast cancer cases registered at the Centre between 2011-2015, 18% were diagnosed as metastatic breast cancer (MBC) and of these individuals only around 12.5% received palliative care. The current barriers for MBC patients to access palliative care are not fully understood due to a lack of data and information. As a result, Dharmais Hospital is developing a model of care aiming to improve the quality of life of MBC patients and increasing their access to palliative care.
Dharmais Hospital NCC is a National Cancer Centre which provides information regarding the current cancer burden in Indonesia through its cancer registry. It also has a strong focus on health promotion and breast cancer screening and has a palliative care department with an outpatient clinic and home care. The hospital’s existing network with local health authorities, especially community health centres, enables Dharmais to establish and expand palliative care services in the communities of West Jakarta.
Project description
Through a SPARC grant awarded in 2019, this project aimed to better understand the needs of MBC patients and improve access to palliative services through the development of a model of care within the hospital.
The team started by identifying MBC patients in the hospital and collaborating with survivor groups and breast cancer NGOs in the region to reach as many patients as possible.
A survey for patients was administered and health care providers were trained on data collection for this purpose. Alongside with the survey, interviews were carried out to identify MBC patients’ needs and the barriers they face in accessing palliative care in West Jakarta.
As the clinicians acquired a deeper understanding of the gaps in information that exist for the patients, they provided them with financial, social, emotional, and spiritual support needed, in addition to proposing palliative care whenever appropriate.
Impact
The needs assessment of MBC patients provided valuable insights concerning the patients and their families’ perspectives about palliative care and barriers to access. This opportunity allowed health providers to inform MBC patients about the benefits and availability of palliative care, as the palliative care services provided by the hospital were already available but underutilised by patients.
Through 60 clinical psychologists, doctors and nurses, 317 patients and their families were interviewed, with one focus group held to further inform findings. The team identified needs for better pain management and symptoms causing the most discomfort, such as fatigue, nausea, and shortness of breath.
After the interviews, medical personnel provided information to the patients on the options available and counselling. The findings from the research subsequently informed the development of treatment guidelines to improve patient support and care.
Through the SPARC grant, a model of care for MBC patients was developed in the Dharmais Hospital NCC West Jakarta that will support the future development of a palliative care unit in each hospital and primary health care centres in the region.
Through future advocacy efforts, it is also hoped that these guidelines can be integrated into the health system to support longer-term and national services for MBC patients.
More about the organisation
Organisation's website: Rumah Sakit Kanker Dharmais - National Cancer Center
(Information from the project description and context is compiled from the final SPARC report)
Last update
Friday 03 February 2023