Expert agreement on the content of the RAPHAEL palliative care approach and monitoring instrument for heart failure: an international delphi study
J C B De Leeuw, Y M J Goertz, R Rolke, C Chelazzi, S Glaveckaite, D Kurpas, D Stefanicka-Wojtas, C Monforte-Royo, P Jaarsma, C Letras, A Banerjee, G J Geersing, E De Graaf, H P Brunner-La Rocca, D J A JanssenAbstract
Background
Despite known benefits, only a minority of patients with heart failure (HF) are referred to palliative care services, often late in the disease trajectory. To facilitate earlier and more consistent palliative care in HF, a structured approach to integrate palliative with HF care supported by an instrument to assess and monitor palliative care needs, is required.
Purpose
The objectives of this Delphi study are to validate the RAPHAEL palliative care approach, which follows the principles of palliative reasoning by assessing and monitoring multidimensional needs with the PAL@Heart monitoring instrument, interpreting these needs together with the patient, and adjusting the care plan accordingly (Figure), and to reach expert agreement on the symptoms, wishes, and needs that will form the content of the PAL@Heart monitoring instrument within the European context.
Method
A two-round modified Delphi study was conducted, complemented by consortium expert panel meetings after each round. Experts in HF and palliative care from nine European countries were recruited through the professional networks of the consortium partners. Participants rated the relevance and wording of items. Agreement was pre-defined as Content Validity Index (CVI)≥0.80 on a 5-point Likert scale (score ≥4 points), with items between CVI 0.75-0.80 agreement reformulated by the consortium panel and re-assessed in the second Delphi round. Items with CVI<0.75 on relevance were removed.
Results
Round one included 155 participants and round two 121 participants (78.1% retention). Agreement was reached on all steps of the RAPHAEL approach (CVI range: 0.82-0.95). Twenty five of the 33 symptoms, (76%) achieved agreement on both relevance and formulation (CVI range relevance: 0.81-0.99). Nineteen of the 20 items (95%) addressing wishes and needs, reached agreement on both relevance and formulation (CVI range relevance: 0.84-0.97).
Conclusion
This Delphi study validated the steps of a holistic palliative care approach for people with HF and established expert agreement on the symptoms, wishes, and needs of a multidimensional monitoring instrument. These findings provide a shared foundation for earlier, more person-centred and coordinated palliative care, while allowing national adaptations. Next steps involve evaluating the perspectives of patients and informal carers to further refine the instrument, as well as conducting feasibility testing in routine practice.RAPHAEL ApproachFor image description, please refer to the figure legend and surrounding text.