Asking Questions Can Help: Development and Preliminary Evaluation of a Question Prompt List and a Palliative Consultation Trigger List for Chronically ill Patients.

Abstract

Background: Discussing disease trajectories with patients living with chronic illnesses is recommended in clinical guidelines worldwide. This open communication in chronic illness management is not commonly implemented in practice leading to patient prolonged suffering and unnecessary hospital admissions and invasive procedures. Providers are unsure how much patients want to know, and patients are unsure what, how, and who to ask. This illness trajectory communication can be improved when patients are able to ask questions that are of greatest concern to them and can discuss them; therefore, engaging actively in their healthcare decisions. A wide range of approaches have been employed and one such approach is the use of communication tools such as Question Prompt Lists [QPL] along with an early palliative care team consult.

Aim: The aims of this project are to develop a 1) culturally sensitive QPLs designed to improve communication about chronic illnesses trajectories particularly in chronic organ failure patients [in patients living with Heart Failure and End Stage Lung and Kidney Diseases], and 2) palliative care team consult trigger list. These two culturally sensitive tools are expected to improve communication in chronic illness management, promote questions asking about prognosis and illness trajectory, and ensure early palliative care consult.

Methods: This project presents a thorough discussion of the available, yet scarce, literature on QPLs and early palliative care team consults in non-oncology chronically ill patient populations. When QPLs were unavailable, this review addressed the needs, questions, and concerns of these patient populations. Then three initial QPLs and three Palliative Consultation Trigger lists were created for patients living with Heart Failure, End Stage Renal Disease and End Stag Lung Disease. A Delphi survey inviting interdisciplinary team of palliative and healthcare providers caring for organ failure patients was used to seek expert consensus regarding the drafts. Ratings of the individual QPLs were aggregated and analyzed to determine the level of consensus. Questions that received less than 80% favorable answers were moved for discussion in the second round of Delphi. A final zoom meeting with all the expert committee members was planned and three final QPLs and Palliative Consultation Trigger lists were reached.

Results: After the second Delphi round, we ended up with final lists comprising of 42 Heart Failure QPL questions, 44 End Stage Renal Disease QPL questions, and 41 End Stage Lung Disease QPL questions. Questions were grouped in categories/themes, 6 categories were generated for each QPL: Disease Specific Information; Treatment Options; Self-Care: What is my role?; Quality of life; Palliative and End of Life care; Questions family members may want to discuss. Eleven final triggers were reached for the Heart Failure and End stage Renal Disease Palliative Consultation Trigger Lists and twelve triggers were reached for the End Stage Lung Disease Palliative Consultation Trigger List.

Conclusion: Future research should assess the impact of the Disease Specific QPLs on short-term, intermediate, and long-term health outcomes as well as assess the impact of Palliative Consultation Trigger Lists on early referral to palliative care. We suggest a follow up Delphi Survey that combines patients and healthcare provider and seeks joint perspectives on these lists. We hope that implementation of these QPLs and palliative care trigger lists will guide patients in asking essential questions during consultation.