During advanced stages of life-limiting diseases, patients often experience multiple symptoms simultaneously. These symptoms may interact and vary in intensity. To ensure effective palliative care, all simultaneously occurring symptoms should be assessed. This is done by exploring the four dimensions of palliative care (physical, psychological, social and spiritual). However, current palliative care guidelines concern separate symptoms, not simultaneously occurring ones.
In the Netherlands, care for patients with life-limiting diseases is mostly provided by health care professionals (HCPs) who are not specialized in palliative care. At the discretion of these HCPs, consultation with or referral to specialized HCPs can take place.
Systematic assessment of the presence or intensity of symptoms is poorly integrated in daily practice. Often the focus is on the symptoms described by the patient, without taking a holistic approach with regard to contributing factors. Due to inadequate knowledge and skills of HCPs, simultaneously occurring symptoms are often missed, and not treated promptly or effectively. This leads to a heavy symptom burden, resulting unnecessarily in a lower quality of life for these patients.
The aim of this project is to improve the quality of life of patients in a palliative care trajectory through timely and adequate identification and treatment of simultaneously occurring, multiple symptoms. To accomplish this aim, the eight cooperating academic Dutch Centres of Expertise in Palliative Care, together with the Netherlands Comprehensive Cancer Organisation (IKNL) will develop and implement a Multidimensional Strategy: MuSt Palliative Care (PC). This strategy will support HCPs in 1) making multidimensional assessments of patients’ symptoms, 2) analysing care needs based on their intensity, possible interactions, and patients’ wishes and preferences, and 3) initiating integrated interventions that will lower symptom burden more promptly and effectively than by focussing unidimensionally on separate symptoms. The Utrecht Symptoom Dagboek-4 dimensioneel (USD-4D), a Dutch instrument based on the Edmonton Symptom Assessment Scale, will be used for multidimensional screening and monitoring. To ensure an integrated approach, the Palliative Reasoning method will be integrated into the MuSt-PC.
This project consists of three parts:
•Part I: knowledge assemblage and development of the MuSt-PC
•Part II: effectiveness study
•Part III: nationwide implementation of the MuSt-PC
The development of the MuSt-PC will take place in three subparts of Part I:
IA. A literature review on multidimensional treatments of multiple simultaneously occurring symptoms.
IB. A nationwide cross sectional study, to determine the prevalence of symptoms in various care settings (GP practices, home care facilities, general and academic hospitals, hospices). This study will be performed on a single day nationwide, with the aim of collecting data from at least 700 patients. The USD-4D will be used to measure the frequency and intensity of simultaneously occurring symptoms in patients with life-limiting illnesses. This will identify common combinations of symptoms, which will be used for the development of the MuSt-PC.
IC. Survey of the necessary framework conditions for the use of the MuSt-PC by HCPs who are not specialized in palliative care. Focus group meetings will be held to determine what HCPs consider to be important requirements regarding the content and use of the MuSt-PC.
Based on the results of IA-C, the MuSt-PC will be developed in part ID. It will consist of a multidimensional screening tool, connected to decision trees for the most frequently reported symptoms, with stepwise actions for interventions and a monitoring tool to record the effectiveness of these interventions. For combinations of symptoms for which no effective interventions have yet been published, an expert team will suggest interventions based on the current guidelines addressing separate symptoms. The RAND Delphi method will be used to construct the MuSt-PC, with the input of HCPs with and without formal palliative care training. Finally, a teaching plan to implement the MuSt-PC will be developed.
Part II consists of an effectiveness study. The effect of stepwise introduction of the MuSt-PC in different settings with patients’ quality of life as the primary endpoint will be determined. Also, user friendliness and applicability of the MuSt-PC will be evaluated. We will initially use a prospective stepped-wedge design, because we consider this the most feasible and efficient design. However, we may adapt this design based on the results in Part I.
In Part III, based on the results of Part II, further development of the content and implementation of the MuSt-PC will take place. The MuSt-PC will be integrated into national PC guidelines and become available in an easily accessible form in the daily practice of HCPs.