Development and initial testing of an illness perception questionnaire for substitute decision makers of critically ill patients: a mixed methods study

doi:10.1007/s12630-025-02919-1

Observational Study

. 2025 Mar;72(3):473-480.

doi: 10.1007/s12630-025-02919-1. Epub 2025 Mar 18.

Development and initial testing of an illness perception questionnaire for substitute decision makers of critically ill patients: a mixed methods study

Louise Mui¹, Brenda Morgan², Michaël Chassé³, Jacob Crawshaw^{4

5}, Claudio M Martin^{6

7

8}

Affiliations

¹ Schulich School of Medicine & Dentistry, Western University, London, ON, Canada.
² Critical Care Trauma Centre, London Health Sciences Centre, London, ON, Canada.
³ Department of Medicine, Centre hospitalier de l'Université de Montréal, Montreal, QC, Canada.
⁴ Centre for Evidence-Based Implementation, Hamilton Health Sciences, Hamilton, ON, Canada.
⁵ Department of Medicine, Faculty of Health Sciences, McMaster University, Hamilton, ON, Canada.
⁶ Division of Critical Care Medicine, Schulich School of Medicine & Dentistry, Western University, London, ON, Canada. critical367@gmail.com.
⁷ Lawson Health Research Institute, St. Joseph's Health Care London and London Health Sciences Centre, London, ON, Canada. critical367@gmail.com.
⁸ , 800 Commissioners Rd E, London, ON, N6A 5W9, Canada. critical367@gmail.com.

PMID: 40102376
DOI: 10.1007/s12630-025-02919-1

Observational Study

Development and initial testing of an illness perception questionnaire for substitute decision makers of critically ill patients: a mixed methods study

Louise Mui et al. Can J Anaesth. 2025 Mar.

. 2025 Mar;72(3):473-480.

doi: 10.1007/s12630-025-02919-1. Epub 2025 Mar 18.

Authors

Louise Mui¹, Brenda Morgan², Michaël Chassé³, Jacob Crawshaw^{4

5}, Claudio M Martin^{6

7

8}

Affiliations

¹ Schulich School of Medicine & Dentistry, Western University, London, ON, Canada.
² Critical Care Trauma Centre, London Health Sciences Centre, London, ON, Canada.
³ Department of Medicine, Centre hospitalier de l'Université de Montréal, Montreal, QC, Canada.
⁴ Centre for Evidence-Based Implementation, Hamilton Health Sciences, Hamilton, ON, Canada.
⁵ Department of Medicine, Faculty of Health Sciences, McMaster University, Hamilton, ON, Canada.
⁶ Division of Critical Care Medicine, Schulich School of Medicine & Dentistry, Western University, London, ON, Canada. critical367@gmail.com.
⁷ Lawson Health Research Institute, St. Joseph's Health Care London and London Health Sciences Centre, London, ON, Canada. critical367@gmail.com.
⁸ , 800 Commissioners Rd E, London, ON, N6A 5W9, Canada. critical367@gmail.com.

PMID: 40102376
DOI: 10.1007/s12630-025-02919-1

Abstract
in English, French

Purpose: The Brief Illness Perception Questionnaire (Brief-IPQ) is used to quantify a patient's understanding of their condition. In critical care settings, substitute decision makers (SDMs) are tasked with making decisions on behalf of patients, but it can be difficult to evaluate how they perceive the patient's illness. We developed the Illness Perception Questionnaire for Substitute Decision Makers (IPQ-SDM) by adapting the Brief-IPQ and testing it with SDMs of patients in critical care.

Methods: In a mixed methods study, we modified the Brief-IPQ for the context of SDMs of critically ill patients using qualitative feedback. We then approached SDMs of critically ill patients three days after intensive care unit (ICU) admission to complete the IPQ-SDM in a prospective observational study. We calculated summary statistics for the individual questions and the total score. We evaluated prespecified associations between individual questions as well as the total score with clinical data that were abstracted from the patient chart.

Results: We received 44/50 (88%) complete responses with a mean (standard deviation [SD]) total score of 43 (11). Forty-six percent reported that they did not have any in-person visits due to the restrictions during the COVID-19 pandemic. The correlation of total score with the nine equivalents of nursing manpower score (NEMS) was 0.42 (P = 0.005) but it was not correlated (P = 0.07) with the multiple organ dysfunction score (MODS). The total mean (SD) score was higher (i.e., worse) for patients who died in hospital (48.2 [9.7], n = 13) than for those who were discharged alive (40.5 [10.2], n = 31, P = 0.03). Concern regarding the illness was correlated with MODS (Spearman correlation coefficient [ρ] = 0.39, P = 0.01) and NEMS (ρ = 0.29, P = 0.04).

Conclusion: We observed a modest level of correlation of the IPQ-SDM score with clinical measures in the adult ICU setting. Further research is needed before such a tool is broadly implemented.

RéSUMé: OBJECTIF: Le Brief Illness Perception Questionnaire (Brief-IPQ) est utilisé pour quantifier la compréhension d’un patient ou d’une patiente de son état. Dans les milieux de soins intensifs, les mandataires spéciaux doivent prendre des décisions au nom des patientes et patients, mais il peut être difficile d’évaluer comment ils ou elles perçoivent la maladie de la personne traitée. Nous avons élaboré le Questionnaire sur la perception de la maladie à l’intention des mandataires spéciaux (IPQ-SDM) en adaptant le Brief-IPQ et en le testant auprès des mandataires spéciaux de patientèle en soins intensifs. MéTHODE: Dans une étude à méthodes mixtes, nous avons modifié le Brief-IPQ pour s’appliquer aux mandataires spéciaux de patients et patientes gravement malades en utilisant une rétroaction qualitative. Nous avons ensuite approché les mandataires spéciaux de personnes gravement malades trois jours après leur admission à l’unité de soins intensifs (USI) pour compléter l’IPQ-SDM dans le cadre d’une étude observationnelle prospective. Nous avons calculé des statistiques récapitulatives pour les questions individuelles et le score total. Nous avons évalué les associations prédéfinies entre les questions individuelles ainsi que le score total avec des données cliniques extraites des dossiers des patientes et patients. RéSULTATS: Nous avons reçu 44 réponses complètes sur 50 (88 %) avec un score total moyen (écart type [ET]) de 43 (11). Quarante-six pour cent ont déclaré ne pas avoir pu faire de visites en personne en raison des restrictions pendant la pandémie de COVID-19. La corrélation du score total avec les neuf équivalents du score de main-d’œuvre infirmière (NEMS) était de 0,42 (P = 0,005), mais il n’était pas corrélé (P = 0,07) avec le score de défaillance multiviscérale (MODS). Le score moyen total (ET) était plus élevé (c.-à-d. pire) pour les personnes décédées à l’hôpital (48,2 [9,7], n = 13) que pour celles qui ont reçu leur congé alors qu’elles étaient encore vivantes (40,5 [10,2], n = 31, P = 0,03). L’inquiétude concernant la maladie était corrélée avec le score MODS (coefficient de corrélation de Spearman [ρ] = 0,39, P = 0,01) et le score NEMS (ρ = 0,29, P = 0,04). CONCLUSION: Nous avons observé un niveau modeste de corrélation entre le score IPQ-SDM et les mesures cliniques dans le cadre d’une unité de soins intensifs pour adultes. Des recherches supplémentaires sont nécessaires avant qu’un tel outil ne soit largement mis en œuvre.

Keywords: critical care; critical illness; illness perception; intensive care; prognosis; questionnaire design; substitute decision-making.

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References

1. Aitken LM, Chaboyer W, Schuetz M, Joyce C, Macfarlane B. Health status of critically ill trauma patients. J Clin Nurs 2014; 23: 704–15. https://doi.org/10.1111/jocn.12026 - DOI - PubMed
1. Petrie KJ, Jago LA, Devcich DA. The role of illness perceptions in patients with medical conditions. Curr Opin Psychiatry 2007; 20: 163–7. https://doi.org/10.1097/yco.0b013e328014a871 - DOI - PubMed
1. Petrie KJ, Weinman J. Patients’ perceptions of their illness: the dynamo of volition in health care. Curr Dir Psychol Sci 2012; 21: 60–5. https://doi.org/10.1177/0963721411429456 - DOI
1. Weinman J, Petrie KJ, Moss-morris R, Horne R. The Illness Perception Questionnaire: a new method for assessing the cognitive representation of illness. Psychol Health 1996; 11: 431–45. https://doi.org/10.1080/08870449608400270 - DOI
1. Moss-Morris R, Weinman J, Petrie K, Horne R, Cameron L, Buick D. The revised Illness Perception Questionnaire (IPQ-R). Psychol Health 2002; 17: 1–16. https://doi.org/10.1080/08870440290001494 - DOI

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[1] Aitken LM, Chaboyer W, Schuetz M, Joyce C, Macfarlane B. Health status of critically ill trauma patients. J Clin Nurs 2014; 23: 704–15. https://doi.org/10.1111/jocn.12026 - DOI - PubMed

[2] Aitken LM, Chaboyer W, Schuetz M, Joyce C, Macfarlane B. Health status of critically ill trauma patients. J Clin Nurs 2014; 23: 704–15. https://doi.org/10.1111/jocn.12026 - DOI - PubMed

[3] Petrie KJ, Jago LA, Devcich DA. The role of illness perceptions in patients with medical conditions. Curr Opin Psychiatry 2007; 20: 163–7. https://doi.org/10.1097/yco.0b013e328014a871 - DOI - PubMed

[4] Petrie KJ, Jago LA, Devcich DA. The role of illness perceptions in patients with medical conditions. Curr Opin Psychiatry 2007; 20: 163–7. https://doi.org/10.1097/yco.0b013e328014a871 - DOI - PubMed

[5] Petrie KJ, Weinman J. Patients’ perceptions of their illness: the dynamo of volition in health care. Curr Dir Psychol Sci 2012; 21: 60–5. https://doi.org/10.1177/0963721411429456 - DOI

[6] Petrie KJ, Weinman J. Patients’ perceptions of their illness: the dynamo of volition in health care. Curr Dir Psychol Sci 2012; 21: 60–5. https://doi.org/10.1177/0963721411429456 - DOI

[7] Weinman J, Petrie KJ, Moss-morris R, Horne R. The Illness Perception Questionnaire: a new method for assessing the cognitive representation of illness. Psychol Health 1996; 11: 431–45. https://doi.org/10.1080/08870449608400270 - DOI

[8] Weinman J, Petrie KJ, Moss-morris R, Horne R. The Illness Perception Questionnaire: a new method for assessing the cognitive representation of illness. Psychol Health 1996; 11: 431–45. https://doi.org/10.1080/08870449608400270 - DOI

[9] Moss-Morris R, Weinman J, Petrie K, Horne R, Cameron L, Buick D. The revised Illness Perception Questionnaire (IPQ-R). Psychol Health 2002; 17: 1–16. https://doi.org/10.1080/08870440290001494 - DOI

[10] Moss-Morris R, Weinman J, Petrie K, Horne R, Cameron L, Buick D. The revised Illness Perception Questionnaire (IPQ-R). Psychol Health 2002; 17: 1–16. https://doi.org/10.1080/08870440290001494 - DOI

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Development and initial testing of an illness perception questionnaire for substitute decision makers of critically ill patients: a mixed methods study

Affiliations

Development and initial testing of an illness perception questionnaire for substitute decision makers of critically ill patients: a mixed methods study

Authors

Affiliations

Abstract
in English, French

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References

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MeSH terms

LinkOut - more resources

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Medical

Abstract in English, French

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Related information

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Medical

Abstract
in English, French