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Distress experienced by lung cancer patients and their family caregivers in the first year of their cancer journey

Published online by Cambridge University Press:  26 April 2021

Michèle Aubin Open the ORCID record for Michèle Aubin [Opens in a new window] ,
Lucie Vézina ,
René Verreault ,
Sébastien Simard ,
Éveline Hudon ,
Jean-François Desbiens ,
Lise Fillion ,
Serge Dumont ,
André Tourigny  and
Serge Daneault
Michèle Aubin*
Affiliation:
Department of Family Medicine and Emergency Medicine, Université Laval, Québec, QC, Canada Research Centre of the Institut de cardiologie et de pneumologie de Québec (IUCPQ), Québec, QC, Canada VITAM-Centre de recherche en santé durable, Québec, QC, Canada
Lucie Vézina
Affiliation:
Department of Family Medicine and Emergency Medicine, Université Laval, Québec, QC, Canada
René Verreault
Affiliation:
VITAM-Centre de recherche en santé durable, Québec, QC, Canada
Sébastien Simard
Affiliation:
Research Centre of the Institut de cardiologie et de pneumologie de Québec (IUCPQ), Québec, QC, Canada Department of Health Sciences, UQAC, Québec, QC, Canada
Éveline Hudon
Affiliation:
Department of Family Medicine and Emergency Medicine, Université de Montréal, Montreal, QC, Canada
Jean-François Desbiens
Affiliation:
VITAM-Centre de recherche en santé durable, Québec, QC, Canada Faculty of Nursing, Université Laval, Québec, QC, Canada
Lise Fillion
Affiliation:
Faculty of Nursing, Université Laval, Québec, QC, Canada Research Center of the CHU de Québec, Québec, QC, Canada
Serge Dumont
Affiliation:
VITAM-Centre de recherche en santé durable, Québec, QC, Canada Faculty of Social Sciences, Université Laval, Québec, QC, Canada
André Tourigny
Affiliation:
VITAM-Centre de recherche en santé durable, Québec, QC, Canada Centre of Excellence on Aging, CHU de Québec, Québec, QC, Canada
Serge Daneault
Affiliation:
Department of Family Medicine and Emergency Medicine, Université de Montréal, Montreal, QC, Canada Research Center of the CHU de Montreal, Montreal, QC, Canada
*
Author for correspondence: Michèle Aubin, Université Laval, Pavillon Ferdinand-Vandry, 1050 Ave de la Médecine, Room 4617, Québec, QCG1 V 0A6, Canada. E-mail: [email protected]
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Abstract

Objectives

Diagnosis of cancer is emotionally threatening not only for patients but also for their family caregivers (FC) who witness and share much of the illness experience. This study compares distress experienced by lung cancer patients and their FC during the year following the diagnosis.

Methods

A prospective cohort study of 206 patients recently diagnosed with inoperable lung cancer (participation rate 79.5%) and 131 FC (participation rate 63.6%) was conducted in an ambulatory oncology clinic in Quebec City (Canada). They completed validated questionnaires regarding their personal and psychological characteristics (Hospital and Anxiety Depression Scale—HADS), in the first months after the diagnosis of lung cancer and after 6 and 12 months. Univariate, bivariate, and linear mixed models were conducted to compare patient and FC distress.

Results

At baseline, 7.8% of patients reported distress (HADS total score >15) and their mean distress score was 7.0 ± 4.9 (range 0–42). In contrast, 33.6% of FC presented significant distress and their mean distress score was 12.0 ± 7.2 (P < 0.0001). Proportions of patients and FC with distress remained relatively stable at 6 and 12 months, and at every time point, FC reported higher levels of distress compared to their relative with cancer (P < 0.0001). Comparable trends were found when looking at the mean scores of distress, anxiety, and depression throughout the study.

Significance of results

Being diagnosed with lung cancer and going through its different phases seems to affect more FC than patients. The psychological impact of such diagnosis appears early after the diagnosis and does not significantly change over time. These findings reinforce the importance for oncology teams, to include FC in their systematic distress screening program, in order to help them cope with their own feelings and be able to play their role in patient support and care throughout the cancer journey.

Keywords

Cancer supportive careCohort studyDistressFamily caregiverLung cancerPatient
Type
Original Article
Information
Palliative & Supportive Care , Volume 20 , Issue 1 , February 2022 , pp. 15 - 21
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Copyright
Copyright © The Author(s), 2021. Published by Cambridge University Press

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