A study protocol for individualized prognostic counselling in the palliative phase

Abstract Background Head and neck squamous cell cancer (HNSCC) has a poor prognosis, with approximately 25–30% of patients transitioning into the palliative phase at some point. The length of this phase is relatively short, with a median duration of five months. Patients in this stage often have inc...

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Main Authors: Boyd Noël van den Besselaar, A. Sewnaik, M. C. Dorr, A. Hoesseini, J. A. Hardillo, R. J. Baatenburg de Jong, M.P.J. Offerman
Format: Article
Language:English
Published: BMC 2025-01-01
Series:BMC Palliative Care
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Online Access:https://doi.org/10.1186/s12904-025-01647-z
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author Boyd Noël van den Besselaar
A. Sewnaik
M. C. Dorr
A. Hoesseini
J. A. Hardillo
R. J. Baatenburg de Jong
M.P.J. Offerman
author_facet Boyd Noël van den Besselaar
A. Sewnaik
M. C. Dorr
A. Hoesseini
J. A. Hardillo
R. J. Baatenburg de Jong
M.P.J. Offerman
author_sort Boyd Noël van den Besselaar
collection DOAJ
description Abstract Background Head and neck squamous cell cancer (HNSCC) has a poor prognosis, with approximately 25–30% of patients transitioning into the palliative phase at some point. The length of this phase is relatively short, with a median duration of five months. Patients in this stage often have increased prognostic information needs. Unfortunately, predicting individual life expectancy in this phase is particularly challenging, as physicians and patients tend to overestimate survival. To address this issue, we developed the prognostic model OncologIQ Palliative based on user preferences. In this study, we now aim to assess the clinical impact of utilizing this model during counselling. Methods This study will employ both quantitative and qualitative approaches. The primary outcome is decisional conflict and satisfaction with the decision-making process after counselling without (cohort 1) and with (cohort 2) OncologIQ Palliative. Therefore, a prospective sequential cohort study will be conducted. Secondary outcomes include the amount of palliative treatment, overall survival rates, and quality of life. These measurements will be collected after the intervention. Additionally, patients’ perspectives on the decision-making process and proactive care planning, including end-of-life discussions, will be explored through interviews. Discussion By offering more personalized prognostic information for HNSCC patients in the palliative phase, we anticipate a shift towards more patient-centred counselling. This approach can facilitate enhanced end-of-life discussions and better proactive care planning. Patients may experience reduced decisional conflict, feel better prepared for what’s coming, and find assistance in their decision-making process. This could potentially lead to fewer palliative treatments. Overall, these aspects can contribute to a better quality of life and quality of care for HNSCC patients in the last phase of their lives. Trial Registration This study was registered November 18, 2024, on ClinicalTrials.gov: NCT06699316.
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spelling doaj-art-af7469761d9645d9a6cd75a3423b8b232025-01-12T12:44:32ZengBMCBMC Palliative Care1472-684X2025-01-012411910.1186/s12904-025-01647-zA study protocol for individualized prognostic counselling in the palliative phaseBoyd Noël van den Besselaar0A. Sewnaik1M. C. Dorr2A. Hoesseini3J. A. Hardillo4R. J. Baatenburg de Jong5M.P.J. Offerman6Department of Otorhinolaryngology and Head and Neck Surgery, Erasmus MC Cancer Institute, University Medical Centre RotterdamDepartment of Otorhinolaryngology and Head and Neck Surgery, Erasmus MC Cancer Institute, University Medical Centre RotterdamDepartment of Otorhinolaryngology and Head and Neck Surgery, Erasmus MC Cancer Institute, University Medical Centre RotterdamDepartment of Otorhinolaryngology and Head and Neck Surgery, Erasmus MC Cancer Institute, University Medical Centre RotterdamDepartment of Otorhinolaryngology and Head and Neck Surgery, Erasmus MC Cancer Institute, University Medical Centre RotterdamDepartment of Otorhinolaryngology and Head and Neck Surgery, Erasmus MC Cancer Institute, University Medical Centre RotterdamDepartment of Otorhinolaryngology and Head and Neck Surgery, Erasmus MC Cancer Institute, University Medical Centre RotterdamAbstract Background Head and neck squamous cell cancer (HNSCC) has a poor prognosis, with approximately 25–30% of patients transitioning into the palliative phase at some point. The length of this phase is relatively short, with a median duration of five months. Patients in this stage often have increased prognostic information needs. Unfortunately, predicting individual life expectancy in this phase is particularly challenging, as physicians and patients tend to overestimate survival. To address this issue, we developed the prognostic model OncologIQ Palliative based on user preferences. In this study, we now aim to assess the clinical impact of utilizing this model during counselling. Methods This study will employ both quantitative and qualitative approaches. The primary outcome is decisional conflict and satisfaction with the decision-making process after counselling without (cohort 1) and with (cohort 2) OncologIQ Palliative. Therefore, a prospective sequential cohort study will be conducted. Secondary outcomes include the amount of palliative treatment, overall survival rates, and quality of life. These measurements will be collected after the intervention. Additionally, patients’ perspectives on the decision-making process and proactive care planning, including end-of-life discussions, will be explored through interviews. Discussion By offering more personalized prognostic information for HNSCC patients in the palliative phase, we anticipate a shift towards more patient-centred counselling. This approach can facilitate enhanced end-of-life discussions and better proactive care planning. Patients may experience reduced decisional conflict, feel better prepared for what’s coming, and find assistance in their decision-making process. This could potentially lead to fewer palliative treatments. Overall, these aspects can contribute to a better quality of life and quality of care for HNSCC patients in the last phase of their lives. Trial Registration This study was registered November 18, 2024, on ClinicalTrials.gov: NCT06699316.https://doi.org/10.1186/s12904-025-01647-zHead and neck squamous cell cancerPrognostic modelPalliative careProactive care planningPrognostic counselling
spellingShingle Boyd Noël van den Besselaar
A. Sewnaik
M. C. Dorr
A. Hoesseini
J. A. Hardillo
R. J. Baatenburg de Jong
M.P.J. Offerman
A study protocol for individualized prognostic counselling in the palliative phase
BMC Palliative Care
Head and neck squamous cell cancer
Prognostic model
Palliative care
Proactive care planning
Prognostic counselling
title A study protocol for individualized prognostic counselling in the palliative phase
title_full A study protocol for individualized prognostic counselling in the palliative phase
title_fullStr A study protocol for individualized prognostic counselling in the palliative phase
title_full_unstemmed A study protocol for individualized prognostic counselling in the palliative phase
title_short A study protocol for individualized prognostic counselling in the palliative phase
title_sort study protocol for individualized prognostic counselling in the palliative phase
topic Head and neck squamous cell cancer
Prognostic model
Palliative care
Proactive care planning
Prognostic counselling
url https://doi.org/10.1186/s12904-025-01647-z
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