Aims
People diagnosed with Primary Malignant Glioma (PMG) experience a high symptom burden, characterised by an uncertain prognosis, rapid decline of physical function and behavioural and neuro-cognitive changes. This qualitative study explored the needs of patients with PMG and their carers to inform the development of a model which seeks to improve quality of care.
Methods
Consecutive patients and informal carers were approached through neurosurgery, oncology and palliative care units of two metropolitan hospitals. Bereaved carers were identified by health care professionals (HCPs) and invited by letter to participate. Semi-structured interviews were conducted by a single interviewer until data saturation. HCPs from two metropolitan hospitals and one community palliative care service were invited to participate in multi-disciplinary focus groups. Interviews and focus groups were recorded and transcribed, and thematically analysed by three investigators (JP, AC, GM). All investigators reviewed the analysis for consistency and cross validation.
Results
Interviews were held with 10 patients, 23 carers (15 active, 8 bereaved), and 6 focus groups involving 35 HCPs (13 nurses, 11 doctors and 11 allied health). Carers reported difficulty managing subtle behavioural and personality changes, cognitive decline and diminished insight. Patients described difficulty accessing and navigating complex care services. Meanwhile carers had needs for information that conflicted with patients' needs for hope. HCPs reported difficulty in planning care as fluctuations in functional state were common, and they were concerned about challenging patients’ hopes. Offers of support tended to be reactive and only when patients expressed need or marked disability rather than offered routinely.
Conclusions
Coordination of care across hospital and community through an identifiable, accessible and informed HCP appears critical. This would ensure proactive services and staged information provision appropriate to disease state, assist navigation through health services and ensure palliative care services are better integrated into patient and family care.
Acknowledgement of Funding
Victorian Cancer Agency