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Table 4 Challenges for palliative care research and solutions given here

From: Implementation of a Care Pathway for Primary Palliative Care in 5 research clusters in Belgium: quasi-experimental study protocol and innovations in data collection (pro-SPINOZA)

The six key challenges How this study tries to solve them
- Varying definitions of palliative care among clinicians and so-called ‘gate-keeping’: clinicians and family members keeping patients from participation - Suggesting a ‘clear’ starting point for palliative care, i.e. life-expectancy of one year; training the GPs in communication skills specifically to obtain an informed consent.
- Inability of patients to give informed consent - By trying to recruit patient participants in the early palliative stage.
Attrition: missing data and drop-out - By having complementary datasets. For instance, if a participating patient stops delivering data, the authors still have access to the health consumption data.
Differing disease categories - Distinctions will be made related to disease category in the health consumption data and the baseline questionnaires.
Respondent burden - The researched unit is not only the patient, but also the informal caregivers and the GP – the research team hopes that all three components of this triangle can encourage each other in the data collection process.
- Only to start there will be little paperwork, afterwards, an email will have to be answered once a month.
- If a patient, the informal care giver or the GP are tired of delivering data, they must contact the PCN to stop participating in the study; this allows the PCN or its related palliative home care team to help participants in clinical aspects, if appropriate and necessary.
Randomization: sometimes, randomization means denying an intervention to patients - The stepped wedge cluster design allows the authors to implement the intervention in all clusters.
Outcomes - A multitude of research methods lead to a prism of outcomes pointing to quality of palliative care. Validated questionnaires like POS and POS-S were combined and reduced to balance importance of outcome measuring with avoidance of respondent burden.