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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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References

REFERENCES

Bowling, A (1995) Measuring Disease: A Review of Disease-Specific Quality of Life Measurement Scales. Buckingham, Philadelphia: Open University Press.Google Scholar
Caruso, R, Nanni, MG, Riba, MB, et al. (2017) The burden of psychosocial morbidity related to cancer: Patient and family issues. International Review of Psychiatry 29(5), 389–402.CrossRefGoogle ScholarPubMed
Chambers, SK, Girgis, A, Occhipinti, S, et al. (2012) Psychological distress and unmet supportive care needs in cancer patients and carers who contact cancer helplines. European Journal of Cancer 21(2), 213–223.CrossRefGoogle ScholarPubMed
Dionne-Odom, JN, Applebaum, AJ, Ornstein, K, et al. (2018) Participation and interest in support services among family caregivers of older adults with cancer. Psycho Oncology 27(3), 969–976. doi:10.1002/pon.4603.CrossRefGoogle ScholarPubMed
Dussel, V, Orellana, L, Soto, N, et al. (2015) Feasibility of conducting a palliative care randomized controlled trial in children with advanced cancer assessment of the PediQuest study. Journal of Pain & Symptom Management 49, 1059–1069.CrossRefGoogle ScholarPubMed
Ellis, J (2012) The impact of lung cancer on patients and carers. Chronic Respirarory Disease 9(1), 39–47.CrossRefGoogle ScholarPubMed
Fletcher, BS, Paul, SM, Dodd, MJ, et al. (2008) Prevalence, severity and impact of symptoms on female family caregivers of patients at the initiation of radiation therapy for prostate cancer. Journal of Clinical Oncology 26(4), 599–605.CrossRefGoogle ScholarPubMed
Fujinami, R, Otis-green, S, Klein, L, et al. (2012) Quality of life of family caregivers and challenges faced in caring for patients with lung cancer. Clinical Journal of Oncology Nursing 16(6), E210–E220.CrossRefGoogle ScholarPubMed
Girgis, A, Lambert, SD, McElduff, P, et al. (2013a) Some things change, some things stay the same: A longitudinal analysis of cancer caregivers’ unmet supportive care needs. Psycho Oncology 22(7), 1557–1564. doi:10.1002/pon.3166.CrossRefGoogle Scholar
Girgis, A, Lambert, S, Johnson, C, et al. (2013b) Physical, psychosocial, relationship, and economic burden of caring for people with cancer: A review. Journal of Oncology Practice 9(4), 197–202.CrossRefGoogle Scholar
Given, B, Wyatt, G, Given, C, et al. (2004) Burden and depression among caregivers of patients with cancer at the end of life. Oncology Nursing Forum 31(6), 1105–1115.CrossRefGoogle ScholarPubMed
Graves, KD, Arnold, SM, Love, CL, et al. (2007) Distress screening in a multidisciplinary lung cancer clinic: Prevalence and predictors of clinically significant distress. Lung Cancer 55(2), 215–224.CrossRefGoogle Scholar
Gröpper, S, van der Meer, E, Landes, T, et al. (2016) Assessing cancer-related distress in cancer patients and caregivers receiving outpatient psycho-oncological counseling. Supportive Care in Cancer 24, 2351–2357.CrossRefGoogle ScholarPubMed
Halkett, GK, Lobb, EA, Shaw, T, et al. (2017) Distress and psychological morbidity do not reduce over time in carers of patients with high-grade glioma. Supportive Care in Cancer 25(3), 887–893. doi:10.1007/s00520-016-3478-6.CrossRefGoogle Scholar
Higginson, IJ, Evans, CJ, Grande, G, et al. (2013) Evaluating complex interventions in end of life care: The MORECare statement on good practice generated by a synthesis of transparent expert consultations and systematic reviews. BMC Medicine 11, 111.CrossRefGoogle ScholarPubMed
Kent, EE, Rowland, JH, Northouse, L, et al. (2016) Caring for caregivers and patients: Research and clinical priorities for informal cancer caregiving. Cancer 122, 1987–1995.CrossRefGoogle ScholarPubMed
Kershaw, T, Ellis, KR, Yoon, H, et al. (2015) The interdependence of advanced cancer patients’ and their family caregivers’ mental health, physical health and self-eficacy over time. Annals of Behavioral Medicine 49(6), 901–911.CrossRefGoogle Scholar
Kim, Y, Shaffer, KM, Carver, CS, et al. (2014) Prevalence and predictors of depressive symptoms among cancer caregivers 5 years after the relative's cancer diagnosis. Journal of Consulting & Clinical Psychology 82(1), 1–8.CrossRefGoogle ScholarPubMed
Lambert, SD, Harrison, JD, Smith, H, et al. (2012a) The unmet needs of partners and caregivers of adults diagnosed with cancer: A systematic review. BMJ Supportive & Palliative Care 2, 224–230. doi:10.1136/bmjspcare-2012-000226.CrossRefGoogle Scholar
Lambert, SD, Jones, BL, Girgis, A, et al. (2012b) Distressed partners and caregivers do not recover easily: Adjustment trajectories among partners and caregivers of cancer survivors. Annals of Behavioral Medicine 44(2), 225–235.CrossRefGoogle Scholar
Lee, YH, Liao, YC, Liao, WY, et al. (2013) Anxiety, depression and related factors in family caregivers of newly diagnosed lung cancer patients before first treatment. Psycho Oncology 22(11), 2617–2623. doi:10.1002/pon.3328.CrossRefGoogle ScholarPubMed
McMullen, CK, Schneider, J, Alstchuler, A, et al. (2014) Caregivers as healthcare managers: Health management activities, needs, and caregiving relationships for colorectal cancer survivors with ostomies. Supportive Care in Cancer 22, 2401–2408.CrossRefGoogle ScholarPubMed
Melin-Johansson, C, Henoch, I, Strang, S, et al. (2012) Living in the presence of death: An integrative literature review of relatives’ important existential concerns when caring for a severely ill family member. Open Nursing Journal 6, 1–12.CrossRefGoogle ScholarPubMed
Merckaert, I, Libert, Y, Lieutenant, F, et al. (2013) Desire for a formal psychological support among caregivers of patients with cancer: Prevalence and implications for screening their needs. Psycho Oncology 22(6), 1389–1395. doi:10.1002/pon.3153.CrossRefGoogle ScholarPubMed
Milbury, K, Badr, H, Fossella, F, et al. (2013) Longitudinal associations between caregiver burden and patient and spouse distress in couples coping with lung cancer. Supportive Care in Cancer 21(9), 2371–2379.CrossRefGoogle ScholarPubMed
Mitchell, AJ, Hussain, N, Grainger, L, et al. (2011) Identification of patient-reported distress by clinical nurse specialists in routine oncology practice: A multicentre UK study. Psycho Oncology 20(10), 1076–1083.CrossRefGoogle ScholarPubMed
Morrison, EJ, Novotny, PJ, Sloan, JA, et al. (2017) Emotional problems, quality of life and symptom burden in patients with lung cancer. Clinical Lung Cancer 18(5), 497–503. doi:10.1016/j.cllc.2017.02.008.CrossRefGoogle ScholarPubMed
Mosher, CE, Champion, VL, Hanna, N, et al. (2013) Support service use and interest in support services among distressed family caregivers of lung cancer patients. Psycho Oncology 22(7), 1549–1556. doi:10.1002/pon.3168.CrossRefGoogle ScholarPubMed
Murray, SA, Kendall, M, Boyd, K, et al. (2010) Archetypal trajectories of social, psychological and spiritual wellbeing and distress in family caregivers of patient with lung cancer: Secondary analysis of serial interviews. British Medical Journal 304, c2581.CrossRefGoogle Scholar
Persson, C and Sundin, K (2008) Being in situation of a significant other to a person with inoperable lung cancer. Cancer Nursing 31(5), 380–388.CrossRefGoogle ScholarPubMed
Plant, H, Moore, S, Richardson, A, et al. (2011) Nurses’ experience of delivering a supportive intervention for family members of patients with lung cancer. European Journal of Cancer Care 20, 436–444.CrossRefGoogle ScholarPubMed
Price, MA, Butow, PN, Costa, DS, et al. (2010) Australia ovarian cancer study group quality of life study investigators. Prevalence and predictors of anxiety and depression in women with evasive ovarian cancer and their caregivers. Medical Journal of Australia 193(5), S52–S57.CrossRefGoogle Scholar
Roberge, P, Doré, I, Menear, M, et al. (2013) A psychometric evaluation of the French Canadian version of the hospital anxiety and depression sclae in a large primary care population. Journal of Affective Disorders 147(1-3), 171–179.CrossRefGoogle Scholar
Ross, S, Mosher, C, Ronis-Tobin, V, et al. (2010) Psychosocial adjustment of family caregivers of head and neck cancer survivors. Supportive Care in Cancer 18, 171–178.CrossRefGoogle ScholarPubMed
Savard, J, Laberge, B, Gauthier, JG, et al. (1998) Evaluating anxiety and depression in HIV-infected patients. Journal of Personality Assessment 71(3), 349–367.CrossRefGoogle ScholarPubMed
Shaffer, KM, Kim, Y and Carver, CS (2016) Physical and mental health trajectories of cancer patients and caregivers across the year post-diagnosis: A dyadic investigation. Psychology Health 31(6), 655–674. doi:10.1080/08870446.2015.1131826.CrossRefGoogle ScholarPubMed
Siminoff, LA, Wilson-Genderson, M and Baker, S Jr (2010) Depressive symptoms in lung cancer patients and their family caregivers and the influence of family environment. Psycho Oncology 19, 1285–1293. doi:10.1002/pon.1696CrossRefGoogle ScholarPubMed
Stenberg, U, Ruland, CM and Miaskowski, C (2010) Review of the literature on the effects of caring for a person with cancer. Psycho Oncology 19, 1013–1025.CrossRefGoogle ScholarPubMed
Van Ryn, M, Sanders, S, Kahn, K, et al. (2011) Objective burden, resources, and other stressors among informal cancer caregivers: A hidden quality issue? Psycho Oncology 20(1), 44–52.CrossRefGoogle ScholarPubMed
Wadwa, D, Burman, D, Swami, N, et al. (2013) Quality of life and mental health in caregivers of outpatients with advanced cancer. Psycho Oncology 22(2), 403–410. doi:10.1002/pon.2104.CrossRefGoogle Scholar
Winterling, J, Wasteson, E, Arving, C, et al. (2010) Factors associated with psychosocial distress and grief resolution in surviving spouses of patients with advanced gastrointestinal cancer. Supportive Cancer in Care 18(11), 1377–1384.CrossRefGoogle Scholar
Xiao, C, Polomano, R and Bruner, DW (2013) Comparison between patient-reported and clinician-observed symptoms in oncology. Cancer Nursing 26(6), E1–E6. doi:10.1097/NCC.0b013e318269040fCrossRefGoogle Scholar
Zabora, J, Brintzenhofeszoc, K, Curbow, B, et al. (2001) The prevalence of psychological distress by cancer site. Psycho Oncology 10(1), 19–28.3.0.CO;2-6>CrossRefGoogle ScholarPubMed
Zigmond, AS and Snaith, RP (1983) The hospital anxiety and depression scale. Acta Psychiatrica Scandinavica 67, 361–370.CrossRefGoogle ScholarPubMed