A new tool, based on multiple signs of disease progression, can help guide healthcare professionals in decisions on when to start palliative care for people with Parkinson’s, researchers report.
Palliative care broadly refers to medical care that aims to improve comfort and life quality for people with serious diseases and their families. There is a widely recognized need for this kind of care in Parkinson’s, particularly at more advanced disease stages.
However, deciding when to start palliative care in Parkinson’s can be difficult, particularly because cognitive abilities are often affected in advanced stages, limiting a person’s capacity to participate in decisions about their own treatment. There is a need for tools that can guide patients and healthcare professionals on when best to start talking about, and implementing, palliative care.
Researchers at Radboud University in the Netherlands began work on such a tool with a series of focus groups and interviews with healthcare professionals who had expertise in treating Parkinson’s and/or providing palliative care. Based on information gleaned from these discussions, the researchers then conducted a Delphi study.
This type of study involves giving the same group of people a questionnaire several times, with the questions modified each time based on previous responses. In this case, a panel of 51 healthcare professionals were asked questions about palliative care and Parkinson’s disease three times, with continuously revised questions.
Based on consensuses reached, the next step was to develop a tool, which the team called the RADboud indicators for PAlliative Care Needs in Parkinson’s Disease (RADPAC-PD).
An important aspect of this tool, which was stressed in the early interviews, is that it provides guidance for two critical moments related to palliative care.
The first critical moment is when to start Advance Care Planning (ACP), or discussions with patients about what kind of care they would like to receive in the future. It was noted that many healthcare professionals are hesitant to have these conversations too early, as they can cause undue stress and psychological burden. But waiting too late risks a patient’s cognitive decline and inability to express personal preferences.
The RADPAC-PD outlines six indicators for starting ACP: a request for ACP on the part of the patient, the patient expressing feelings of hopelessness or dread of the future, more frequent falls, difficulty swallowing (dysphagia), detectable cognitive problems or psychological issues, and a first unplanned hospital visit.
If at least two of these indicators are present, the RADPAC-PD recommends beginning conversations around ACP.
The second critical moment defined on the RADPAC-PD is the initiation of palliative care itself. Here, four indicators were proposed: the goal of care moving towards maximizing comfort, a transition in care needs (e.g., nursing home admission or increasing at-home help), Parkinson’s-specific treatments becoming less effective or more complex, and the progression of certain Parkinson’s-specific symptoms (including dysphagia, frequent falls, and significant weight loss).
If at least one of these indicators is present, the RADPAC-PD recommends commencing palliative care.
“This study describes the systematic development of the RADPAC-PD based on qualitative research and a Delphi study,” the researchers concluded. “We expect that applying the RADPAC-PD, for example on an annual basis throughout the PD trajectory, can facilitate identification of the palliative phase in PD patients in daily practice.”
But, they added, “We do not yet have evidence about the applicability of this instrument. We acknowledge that further research is needed on the implementation of the RADPAC-PD.”
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