Quality of life of family caregivers and survival of head and neck cancer patients in palliative care
Daniel Paixão Pequeno
Laboratory of Cancer Genetics, School of Medical Sciences, University of Campinas, Campinas, São Paulo, Brazil
Search for more papers by this authorJuliana Carron
Laboratory of Cancer Genetics, School of Medical Sciences, University of Campinas, Campinas, São Paulo, Brazil
Search for more papers by this authorKarla Cristina Gaspar
Department of Anesthesiology, Oncology, and Radiology, School of Medical Sciences, University of Campinas, Campinas, São Paulo, Brazil
Search for more papers by this authorCarmen Silvia Passos Lima
Laboratory of Cancer Genetics, School of Medical Sciences, University of Campinas, Campinas, São Paulo, Brazil
Department of Anesthesiology, Oncology, and Radiology, School of Medical Sciences, University of Campinas, Campinas, São Paulo, Brazil
Search for more papers by this authorCorresponding Author
Gustavo Jacob Lourenço
Laboratory of Cancer Genetics, School of Medical Sciences, University of Campinas, Campinas, São Paulo, Brazil
Correspondence
Gustavo Jacob Lourenço, Laboratory of Cancer Genetics, School of Medical Sciences, University of Campinas, 50 Vital Brasil Street, Barão Geraldo, Campinas, São Paulo, 13083-888, Brazil.
Email: [email protected]
Search for more papers by this authorDaniel Paixão Pequeno
Laboratory of Cancer Genetics, School of Medical Sciences, University of Campinas, Campinas, São Paulo, Brazil
Search for more papers by this authorJuliana Carron
Laboratory of Cancer Genetics, School of Medical Sciences, University of Campinas, Campinas, São Paulo, Brazil
Search for more papers by this authorKarla Cristina Gaspar
Department of Anesthesiology, Oncology, and Radiology, School of Medical Sciences, University of Campinas, Campinas, São Paulo, Brazil
Search for more papers by this authorCarmen Silvia Passos Lima
Laboratory of Cancer Genetics, School of Medical Sciences, University of Campinas, Campinas, São Paulo, Brazil
Department of Anesthesiology, Oncology, and Radiology, School of Medical Sciences, University of Campinas, Campinas, São Paulo, Brazil
Search for more papers by this authorCorresponding Author
Gustavo Jacob Lourenço
Laboratory of Cancer Genetics, School of Medical Sciences, University of Campinas, Campinas, São Paulo, Brazil
Correspondence
Gustavo Jacob Lourenço, Laboratory of Cancer Genetics, School of Medical Sciences, University of Campinas, 50 Vital Brasil Street, Barão Geraldo, Campinas, São Paulo, 13083-888, Brazil.
Email: [email protected]
Search for more papers by this authorFunding Information: This study was supported by “Fundação de Amparo à Pesquisa do Estado de São Paulo” (grant number 2012/17182-1).
Abstract
Objective
The aim of this study is to assess the effect of sociodemographic and genetic features on the quality of life (QoL) of family caregivers (FCGs) of patients with head and neck cancer (HNC) in palliative care (PC) and the effect of QoL of FCGs on patients' survival.
Methods
A questionnaire was applied to obtain sociodemographic information of 100 FCGs of patients with HNC in PC. The WHOQoL-bref questionnaire was used to measure QoL. Genotypes were identified using real-time PCR. Differences between groups were assessed by linear regression. Event-free survival (EFS) and overall survival (OS) were calculated by the Cox proportional hazard ratio (HR) regression.
Results
Worse QoL in the overall QoL (p = 0.04), physical health (p = 0.04), psychological (p = 0.005), and environment (p = 0.02) domains was associated to employed caregivers. Collective transport was related to worse QoL of the FCGs in the general health (p = 0.02) and psychological (p = 0.01) domains. Lower levels of QoL of FCGs in the social relationships domain were predictive of a decrease in EFS (HR: 1.98, p = 0.01) and OS (HR: 2.01, p = 0.01) of the patients.
Conclusion
The results suggest that employment status and means of transportation may impair the QoL of FCGs. Lower levels of QoL of FCGs in the social relationships domain could decrease patients' survival.
CONFLICT OF INTEREST
The authors declare no conflicts of interest.
Open Research
DATA AVAILABILITY STATEMENT
The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.
Supporting Information
| Filename | Description |
|---|---|
| ecc13731-sup-0001-Supplementary material.docxWord 2007 document , 1.2 MB |
Data S1. Supporting Information |
| ecc13731-sup-0002-Supplementary tables.docxWord 2007 document , 19.7 KB |
Table S1. Cronbach's reliability measures of the World Health Organization Quality of Life Instrument-Short Form domain scores of the 100 family caregivers of head and neck squamous cell carcinoma patients in palliative care Table S2. Values of the mean, standard deviation, and range of the 26 items of World Health Organization Quality of Life Instrument-Short Form from 100 family caregivers of head and neck cancer patients in palliative care |
Please note: The publisher is not responsible for the content or functionality of any supporting information supplied by the authors. Any queries (other than missing content) should be directed to the corresponding author for the article.
REFERENCES
- Aizer, A. A., Chen, M. H., McCarthy, E. P., Mendu, M. L., Koo, S., Wilhite, T. J., Graham, P. L., Choueiri, T. K., Hoffman, K. E., Martin, N. E., Hu, J. C., & Nguyen, P. L. (2013). Marital status and survival in patients with cancer. Journal of Clinical Oncology, 31(31), 3869–3876. https://www.ncbi.nlm.nih.gov/pubmed/24062405. https://doi.org/10.1200/JCO.2013.49.6489
- Al Morshedy, S., Elsaadany, H. F., Ibrahim, H. E., Sherif, A. M., Farghaly, M. A., Allah, M. A., Abouzeid, H., Elashkar, S. S. A., Hamed, M. E., Fathy, M. M., Khalil, A. M., Noah, M. A., Hegab, M. S., Ahmed, A. R., Hashem, M. I. A., Emam, A. A., Anany, H. G., Ibrahim, B. R., Gawish, H. H., … Alsayed, S. F. (2017). Interleukin-1β and interleukin-1receptor antagonist polymorphisms in Egyptian children with febrile seizures: A case-control study. Medicine (Baltimore), 96(11), e6370. https://www.ncbi.nlm.nih.gov/pubmed/28296777. https://doi.org/10.1097/MD.0000000000006370
- Alexander, K., Cooper, B., Paul, S. M., West, C., Yates, P., Kober, K. M., Aouizerat, B. E., & Miaskowski, C. (2014). Evidence of associations between cytokine gene polymorphisms and quality of life in patients with cancer and their family caregivers. Oncology Nursing Forum, 41(5), E267–E281. https://www.ncbi.nlm.nih.gov/pubmed/25158664. https://doi.org/10.1188/14.ONF.E267-E281
- Alexander, K. E., Cooper, B. A., Paul, S. M., Yates, P., Aouizerat, B. E., & Miaskowski, C. (2016). Phenotypic and molecular characteristics associated with various domains of quality of life in oncology patients and their family caregivers. Quality of Life Research, 25(11), 2853–2868. https://www.ncbi.nlm.nih.gov/pubmed/27160108. https://doi.org/10.1007/s11136-016-1310-x
- Aouizerat, B. E., Dhruva, A., Paul, S. M., Cooper, B. A., Kober, K. M., & Miaskowski, C. (2015). Phenotypic and molecular evidence suggests that decrements in morning and evening energy are distinct but related symptoms. Journal of Pain and Symptom Management, 50(5), 599–614.e593. https://www.ncbi.nlm.nih.gov/pubmed/26031709. https://doi.org/10.1016/j.jpainsymman.2015.05.008
- Badr, H., Herbert, K., Reckson, B., Rainey, H., Sallam, A., & Gupta, V. (2016). Unmet needs and relationship challenges of head and neck cancer patients and their spouses. Journal of Psychosocial Oncology, 34(4), 336–346. https://www.ncbi.nlm.nih.gov/pubmed/27269579. https://doi.org/10.1080/07347332.2016.1195901
- Bartels, M. (2015). Genetics of wellbeing and its components satisfaction with life, happiness, and quality of life: A review and meta-analysis of heritability studies. Behavior Genetics, 45(2), 137–156. https://www.ncbi.nlm.nih.gov/pubmed/25715755. https://doi.org/10.1007/s10519-015-9713-y
- Benitez, B. A., Jin, S. C., Guerreiro, R., Graham, R., Lord, J., Harold, D., Sims, R., Lambert, J. C., Gibbs, J. R., Bras, J., Sassi, C., Harari, O., Bertelsen, S., Lupton, M. K., Powell, J., Bellenguez, C., Brown, K., Medway, C., Haddick, P. C. G., … Cruchaga, C. (2014). Missense variant in TREML2 protects against Alzheimer's disease. Neurobiology of Aging, 35(6), 1510.e1519–1510.e1526. https://www.ncbi.nlm.nih.gov/pubmed/24439484. https://doi.org/10.1016/j.neurobiolaging.2013.12.010
- Boaventura, P., Durães, C., Mendes, A., Costa, N. R., Chora, I., Ferreira, S., Emanuel, E., Lopes, P., Rosa, G., Marques, P., Bettencourt, P., Oliveira, I., Costa, F., Ramos, I., Teles, M. J., Guimarães, J. T., Sobrinho-Simões, M., & Soares, P. (2016). IL6-174 G>C polymorphism (rs1800795) association with late effects of low dose radiation exposure in the Portuguese tinea capitis cohort. PLoS ONE, 11(9), e0163474. https://www.ncbi.nlm.nih.gov/pubmed/27662210. https://doi.org/10.1371/journal.pone.0163474
- Boele, F. W., Given, C. W., Given, B. A., Donovan, H. S., Schulz, R., Weimer, J. M., Jan Drappatz, J., Lieberman, F. S., & Sherwood, P. R. (2017). Family caregivers' level of mastery predicts survival of patients with glioblastoma: A preliminary report. Cancer, 123(5), 832–840. https://www.ncbi.nlm.nih.gov/pubmed/27787881. https://doi.org/10.1002/cncr.30428
- Burris, J. L., Rivera-Rivera, J. N., Armeson, K., Zapka, J., Alberg, A. J., Day, T. A., & Sterba, K. R. (2019). Causal attributions and their impact on psychosocial functioning in head and neck cancer patient-caregiver dyads: A preliminary, longitudinal study. Quality of Life Research, 28(4), 1105–1109. https://www.ncbi.nlm.nih.gov/pubmed/30515660. https://doi.org/10.1007/s11136-018-2078-y
- Carron, J., Costa, A. P. D., Rinck-Junior, J. A., Mariano, F. V., de Sá Carvalho, B., Lima, C. S. P., & Lourenço, G. J. (2020). Role of a genetic variation in the microRNA-4421 binding site of ERP29 regarding risk of oropharynx cancer and prognosis. Scientific Reports, 10(1), 17039. https://www.ncbi.nlm.nih.gov/pubmed/33046743. https://doi.org/10.1038/s41598-020-73675-z
- Coughlin, S. S., & King, J. (2010). Breast and cervical cancer screening among women in metropolitan areas of the United States by county-level commuting time to work and use of public transportation, 2004 and 2006. BMC Public Health, 10, 146. https://www.ncbi.nlm.nih.gov/pubmed/20302614. https://doi.org/10.1186/1471-2458-10-146
- da Rosa, L. F. A. (2014). Direitos legais da pessoa com câncer: conhecimentos de usuários de um serviço de oncologia público. Revista De Enfermagem Da UFSM, 4(4), 13. https://periodicos.ufsm.br/reufsm/article/view/13002/pdf. https://doi.org/10.5902/2179769213002
10.5902/2179769213002 Google Scholar
- Dionne-Odom, J. N., Hull, J. G., Martin, M. Y., Lyons, K. D., Prescott, A. T., Tosteson, T., Li, Z., Akyar, I., Raju, D., & Bakitas, M. A. (2016). Associations between advanced cancer patients' survival and family caregiver presence and burden. Cancer Medicine, 5(5), 853–862. https://www.ncbi.nlm.nih.gov/pubmed/26860217. https://doi.org/10.1002/cam4.653
- Dunn, L. B., Aouizerat, B. E., Langford, D. J., Cooper, B. A., Dhruva, A., Cataldo, J. K., Baggott, C. R., Merriman, J. D., Dodd, M., West, C., Paul, S. M., & Miaskowski, C. (2013). Cytokine gene variation is associated with depressive symptom trajectories in oncology patients and family caregivers. European Journal of Oncology Nursing, 17(3), 346–353. https://www.ncbi.nlm.nih.gov/pubmed/23187335. https://doi.org/10.1016/j.ejon.2012.10.004
- Edge, S. B., & Compton, C. C. (2010). The American joint committee on Cancer: The 7th edition of the AJCC cancer staging manual and the future of TNM. Annals of Surgical Oncology, 17(6), 1471–1474. https://www.ncbi.nlm.nih.gov/pubmed/20180029. https://doi.org/10.1245/s10434-010-0985-4
- Fleck, M. P., Louzada, S., Xavier, M., Chachamovich, E., Vieira, G., Santos, L., & Pinzon, V. (2000). Application of the Portuguese version of the abbreviated instrument of quality life WHOQOL-bref. Revista de Saúde Pública, 34(2), 178–183. https://www.ncbi.nlm.nih.gov/pubmed/10881154. https://doi.org/10.1590/s0034-89102000000200012
- Foxwell, K. R., & Scott, S. E. (2011). Coping together and apart: Exploring how patients and their caregivers manage terminal head and neck cancer. Journal of Psychosocial Oncology, 29(3), 308–326. https://www.ncbi.nlm.nih.gov/pubmed/21590575. https://doi.org/10.1080/07347332.2011.563343
- Hanly, P., Maguire, R., Balfe, M., Hyland, P., Timmons, A., O'Sullivan, E., Butow, P., & Sharp, L. (2016). Burden and happiness in head and neck cancer carers: The role of supportive care needs. Support Care Cancer, 24(10), 4283–4291. https://www.ncbi.nlm.nih.gov/pubmed/27185021. https://doi.org/10.1007/s00520-016-3261-8
- Heinonen, T., Loimu, V., Saarilahti, K., Saarto, T., & Mäkitie, A. (2018). End-of-life care pathway of head and neck cancer patients: Single-institution experience. European Archives of Oto-Rhino-Laryngology, 275(2), 545–551. https://www.ncbi.nlm.nih.gov/pubmed/29247265. https://doi.org/10.1007/s00405-017-4843-x
- Karshikoff, B., Sundelin, T., & Lasselin, J. (2017). Role of inflammation in human fatigue: Relevance of multidimensional assessments and potential neuronal mechanisms. Frontiers in Immunology, 8, 21. https://www.ncbi.nlm.nih.gov/pubmed/28163706. https://doi.org/10.3389/fimmu.2017.00021
- Kurtz, M. E., Given, B., Kurtz, J. C., & Given, C. W. (1994). The interaction of age, symptoms, and survival status on physical and mental health of patients with cancer and their families. Cancer, 74(7 Suppl), 2071–2078. https://www.ncbi.nlm.nih.gov/pubmed/8087774. https://doi.org/10.1002/1097-0142(19941001)74:7%2B%3C2071::aid-cncr2820741715%3E3.0.co;2-r
10.1002/1097-0142(19941001)74:7+<2071::AID-CNCR2820741715>3.0.CO;2-R CAS PubMed Web of Science® Google Scholar
- Langenberg, S. M. C. H., van Herpen, C. M. L., van Opstal, C. C. M., Wymenga, A. N. M., van der Graaf, W. T. A., & Prins, J. B. (2019). Caregivers' burden and fatigue during and after patients' treatment with concomitant chemoradiotherapy for locally advanced head and neck cancer: A prospective, observational pilot study. Support Care Cancer, 27(11), 4145–4154. https://www.ncbi.nlm.nih.gov/pubmed/30796519. https://doi.org/10.1007/s00520-019-04700-9
- Lee, Y., Lin, P. Y., Chien, C. Y., & Fang, F. M. (2015). Prevalence and risk factors of depressive disorder in caregivers of patients with head and neck cancer. Psychooncology, 24(2), 155–161. https://www.ncbi.nlm.nih.gov/pubmed/25045052. https://doi.org/10.1002/pon.3619
- Li, Q., Gan, L., Liang, L., Li, X., & Cai, S. (2015). The influence of marital status on stage at diagnosis and survival of patients with colorectal cancer. Oncotarget, 6(9), 7339–7347. https://www.ncbi.nlm.nih.gov/pubmed/25749515. https://doi.org/10.18632/oncotarget.3129
- Lin, C., Kang, S. Y., Donermeyer, S., Teknos, T. N., & Wells-Di Gregorio, S. M. (2020). Supportive care needs of patients with head and neck cancer referred to palliative medicine. Otolaryngology and Head and Neck Surgery, 163(2), 356–363. https://www.ncbi.nlm.nih.gov/pubmed/32178571. https://doi.org/10.1177/0194599820912029
- Longacre, M. L., Ridge, J. A., Burtness, B. A., Galloway, T. J., & Fang, C. Y. (2012). Psychological functioning of caregivers for head and neck cancer patients. Oral Oncology, 48(1), 18–25. https://www.ncbi.nlm.nih.gov/pubmed/22154127. https://doi.org/10.1016/j.oraloncology.2011.11.012
- Mady, L. J., Nilsen, M. L., & Johnson, J. T. (2018). Head and neck cancer in the elderly: Frailty, shared decisions, and avoidance of low value care. Clinics in Geriatric Medicine, 34(2), 233–244. https://www.ncbi.nlm.nih.gov/pubmed/29661335. https://doi.org/10.1016/j.cger.2018.01.003
- Mayland, C. R., Ho, Q. M., Doughty, H. C., Rogers, S. N., Peddinti, P., Chada, P., Mason, S., Cooper, M., & Dey, P. (2021). The palliative care needs and experiences of people with advanced head and neck cancer: A scoping review. Palliative Medicine, 35(1), 27–44. https://www.ncbi.nlm.nih.gov/pubmed/33084497. https://doi.org/10.1177/0269216320963892
- Merriman, J. D., Aouizerat, B. E., Langford, D. J., Cooper, B. A., Baggott, C. R., Cataldo, J. K., Dhruva, A., Dunn, L., West, C., Paul, S. M., Ritchie, C. S., Swift, P. S., & Miaskowski, C. (2014). Preliminary evidence of an association between an interleukin 6 promoter polymorphism and self-reported attentional function in oncology patients and their family caregivers. Biological Research for Nursing, 16(2), 152–159. https://www.ncbi.nlm.nih.gov/pubmed/23482714. https://doi.org/10.1177/1099800413479441
- Miaskowski, C., Cataldo, J. K., Baggott, C. R., West, C., Dunn, L. B., Dhruva, A., Merriman, J. D., Langford, D. J., Kober, K. M., Paul, S. M., Cooper, B. A., & Aouizerat, B. E. (2015). Cytokine gene variations associated with trait and state anxiety in oncology patients and their family caregivers. Support Care Cancer, 23(4), 953–965. https://www.ncbi.nlm.nih.gov/pubmed/25249351. https://doi.org/10.1007/s00520-014-2443-5
- Montazeri, A. (2009). Quality of life data as prognostic indicators of survival in cancer patients: An overview of the literature from 1982 to 2008. Health and Quality of Life Outcomes, 7, 102. https://www.ncbi.nlm.nih.gov/pubmed/20030832. https://doi.org/10.1186/1477-7525-7-102
- O'Sullivan, E. M., & Higginson, I. J. (2016). ‘I'll continue as long as I can, and die when I can't help it’: A qualitative exploration of the views of end-of-life care by those affected by head and neck cancer (HNC). BMJ Supportive & Palliative Care, 6(1), 43–51. https://www.ncbi.nlm.nih.gov/pubmed/24823693. https://doi.org/10.1136/bmjspcare-2014-000664
- Paek, M. S., Nightingale, C. L., Tooze, J. A., Milliron, B. J., Weaver, K. E., & Sterba, K. R. (2018). Contextual and stress process factors associated with head and neck cancer caregivers' physical and psychological well-being. European Journal of Cancer Care, 27(2), e12833. https://www.ncbi.nlm.nih.gov/pubmed/29461649. https://doi.org/10.1111/ecc.12833
- Pequeno, D. P., Viaro, E. G., Carron, J., Silva, D. R., Gaspar, K. C., Lima, C. S. P., & Lourenço, G. J. (2021). Influence of sociodemographic characteristics and inflammation-related gene variants on the comfort level of caregivers of patients with head and neck Cancer. Journal of Holistic Nursing, 40(3), 227–237. https://www.ncbi.nlm.nih.gov/pubmed/34636689. https://doi.org/10.1177/08980101211046738
- Rohleder, N., Marin, T. J., Ma, R., & Miller, G. E. (2009). Biologic cost of caring for a cancer patient: Dysregulation of pro- and anti-inflammatory signaling pathways. Journal of Clinical Oncology, 27(18), 2909–2915. https://www.ncbi.nlm.nih.gov/pubmed/19433690. https://doi.org/10.1200/JCO.2008.18.7435
- Sciubba, J. J. (2016). End-of-life care in the head and neck cancer patient. Oral Diseases, 22(8), 740–744. https://www.ncbi.nlm.nih.gov/pubmed/27196301. https://doi.org/10.1111/odi.12506
- Sesterhenn, A. M., Folz, B. J., Bieker, M., Teymoortash, A., & Werner, J. A. (2008). End-of-life care for terminal head and neck cancer patients. Cancer Nursing, 31(2), E40–E46. https://www.ncbi.nlm.nih.gov/pubmed/18490879. https://doi.org/10.1097/01.NCC.0000305709.37530.a7
- Silveira, M. R., & Cocco, R. G. (2013). Transporte público, mobilidade e planejamento urbano: contradições essenciais. Estudos Avançados, 27(79), 14–53. https://doi.org/10.1590/S0103-40142013000300004
10.1590/S0103-40142013000300004 Google Scholar
- Swanberg, J. E. (2006). Making it work: Informal caregiving, cancer, and employment. Journal of Psychosocial Oncology, 24(3), 1–18. https://www.ncbi.nlm.nih.gov/pubmed/17088239. https://doi.org/10.1300/J077v24n03_01
- Vasilyev, F. F., Silkov, A. N., & Sennikov, S. V. (2015). Relationship between interleukin-1 type 1 and 2 receptor gene polymorphisms and the expression level of membrane-bound receptors. Cellular & Molecular Immunology, 12(2), 222–230. https://www.ncbi.nlm.nih.gov/pubmed/24976267. https://doi.org/10.1038/cmi.2014.43
- Virta, M., Hurme, M., & Helminen, M. (2002). Increased plasma levels of pro- and anti-inflammatory cytokines in patients with febrile seizures. Epilepsia, 43(8), 920–923. https://www.ncbi.nlm.nih.gov/pubmed/12181012. https://doi.org/10.1046/j.1528-1157.2002.02002.x
- World Health Organization. Division of Mental Health. (1996). WHOQOL-BREF: Introduction, administration, scoring and generic version of the assessment: Field trial version, December 1996. World Health Organization.
- Yuen, H. K., Gillespie, M. B., Day, T. A., Morgan, L., & Burik, J. K. (2007). Driving behaviors in patients with head and neck cancer during and after cancer treatment: A preliminary report. Head & Neck, 29(7), 675–681. https://www.ncbi.nlm.nih.gov/pubmed/17274048. https://doi.org/10.1002/hed.20567
- Zhang, J., Gan, L., Wu, Z., Yan, S., Liu, X., & Guo, W. (2017). The influence of marital status on the stage at diagnosis, treatment, and survival of adult patients with gastric cancer: A population-based study. Oncotarget, 8(14), 22385–22405. https://www.ncbi.nlm.nih.gov/pubmed/26894860. https://doi.org/10.18632/oncotarget.7399
