Caregiver burden and health-related quality of life among family caregivers of oesophageal cancer patients: a prospective nationwide cohort study

References

• Family Caregiver Alliance. 2022. Definitions; [cited 2022 May 20]. Available from: https://www.caregiver.org/resource/definitions-0/
   Google Scholar
• Kent EE, Rowland JH, Northouse L, et al. Caring for caregivers and patients: research and clinical priorities for informal cancer caregiving. Cancer. 2016;122(13):1987–1995.
   PubMed Web of Science ®Google Scholar
• Mitchell AJ, Ferguson DW, Gill J, et al. Depression and anxiety in long-term cancer survivors compared with spouses and healthy controls: a systematic review and meta-analysis. Lancet Oncol. 2013;14(8):721–732.
   PubMed Web of Science ®Google Scholar
• Kim Y, Given BA. Quality of life of family caregivers of cancer survivors: across the trajectory of the illness. Cancer. 2008;112(11 Suppl):2556–2568.
   PubMed Web of Science ®Google Scholar
• Northouse L, Williams AL, Given B, et al. Psychosocial care for family caregivers of patients with cancer. J Clin Oncol. 2012;30(11):1227–1234.
   PubMed Web of Science ®Google Scholar
• Hagedoorn M, Sanderman R, Bolks HN, et al. Distress in couples coping with cancer: a meta-analysis and critical review of role and gender effects. Psychol Bull. 2008;134(1):1–30.
   PubMed Web of Science ®Google Scholar
• Hodges LJ, Humphris GM, Macfarlane G. A meta-analytic investigation of the relationship between the psychological distress of cancer patients and their carers. Soc Sci Med. 2005;60(1):1–12.
   PubMed Web of Science ®Google Scholar
• Liu Z, Heffernan C, Tan J. Caregiver burden: a concept analysis. Int J Nurs Sci. 2020;7(4):438–445.
   PubMed Web of Science ®Google Scholar
• Kim Y, Carver CS, Ting A. Family caregivers’ unmet needs in long-term cancer survivorship. Semin Oncol Nurs. 2019;35(4):380–383.
   PubMed Web of Science ®Google Scholar
• Sun V, Raz DJ, Kim JY. Caring for the informal cancer caregiver. Curr Opin Support Palliat Care. 2019;13(3):238–242.
   PubMed Web of Science ®Google Scholar
• Lagergren J, Smyth E, Cunningham D, et al. Oesophageal cancer. Lancet. 2017;390(10110):2383–2396.
   PubMed Web of Science ®Google Scholar
• Taioli E, Schwartz RM, Lieberman-Cribbin W, et al. Quality of life after open or minimally invasive esophagectomy in patients with esophageal cancer-a systematic review. Semin Thorac Cardiovasc Surg. 2017;29(3):377–390.
   PubMed Web of Science ®Google Scholar
• Scarpa M, Valente S, Alfieri R, et al. Systematic review of health-related quality of life after esophagectomy for esophageal cancer. World J Gastroenterol. 2011;17(42):4660–4674.
   PubMed Web of Science ®Google Scholar
• Jacobs M, Macefield RC, Elbers RG, et al. Meta-analysis shows clinically relevant and long-lasting deterioration in health-related quality of life after esophageal cancer surgery. Qual Life Res. 2014;23(4):1155–1176.
   PubMed Web of Science ®Google Scholar
• Schandl A, Lagergren J, Johar A, et al. Health-related quality of life 10 years after oesophageal cancer surgery. Eur J Cancer. 2016;69:43–50.
   PubMed Web of Science ®Google Scholar
• Hellstadius Y, Lagergren J, Zylstra J, et al. A longitudinal assessment of psychological distress after oesophageal cancer surgery. Acta Oncol. 2017;56(5):746–752.
   PubMed Web of Science ®Google Scholar
• Ringborg CH, Schandl A, Wengstrom Y, et al. Experiences of being a family caregiver to a patient treated for oesophageal cancer-1 year after surgery. Support Care Cancer. 2022;30(1):915–921.
   PubMed Web of Science ®Google Scholar
• Mohammad NH, Walter AW, van Oijen MGH, et al. Burden of spousal caregivers of stage II and III esophageal cancer survivors 3 years after treatment with curative intent. Support Care Cancer. 2015;23(12):3589–3598.
   PubMed Web of Science ®Google Scholar
• Family Caregiver Alliance. 2022. Caregiver statistics: demographics; [cited 2022 May 20]. Available from: https://www.caregiver.org/resource/caregiver-statistics-demographics/
   Google Scholar
• Schandl A, Johar A, Anandavadivelan P, et al. Patient-reported outcomes 1 year after oesophageal cancer surgery. Acta Oncol. 2020;59(6):613–619.
   PubMed Web of Science ®Google Scholar
• Elmstahl S, Malmberg B, Annerstedt L. Caregiver’s burden of patients 3 years after stroke assessed by a novel caregiver burden scale. Arch Phys Med Rehabil. 1996;77(2):177–182.
   PubMed Web of Science ®Google Scholar
• Agren S, Evangelista L, Stromberg A. Do partners of patients with chronic heart failure experience caregiver burden? Eur J Cardiovasc Nurs. 2010;9(4):254–262.
   PubMed Web of Science ®Google Scholar
• Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta Psychiatr Scand. 1983;67(6):361–370.
   PubMed Web of Science ®Google Scholar
• Annunziata MA, Muzzatti B, Altoe G. Defining hospital anxiety and depression scale (HADS) structure by confirmatory factor analysis: a contribution to validation for oncological settings. Ann Oncol. 2011;22(10):2330–2333.
   PubMed Web of Science ®Google Scholar
• Bjelland I, Dahl AA, Haug TT, et al. The validity of the hospital anxiety and depression scale: an updated literature review. J Psychosom Res. 2002;52(2):69–77.
   PubMed Web of Science ®Google Scholar
• Djukanovic I, Carlsson J, Arestedt K. Is the hospital anxiety and depression scale (HADS) a valid measure in a general population 65–80 years old? A psychometric evaluation study. Health Qual Life Out. 2017;15(1):193.
   PubMed Web of Science ®Google Scholar
• Weiss DMC. The impact of event scale – revised. New York, Guilford: Assessing Psychological Trauma and PTSD; 1996.
   Google Scholar
• Hays RD, Morales LS. The RAND-36 measure of health-related quality of life. Ann Med. 2001;33(5):350–357.
   PubMed Web of Science ®Google Scholar
• Hays RD, Sherbourne CD, Mazel RM. The RAND 36-item health survey 1.0. Health Econ. 1993;2(3):217–227.
   PubMedGoogle Scholar
• Ware JE Jr., Sherbourne CD. The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Med Care. 1992;30(6):473–483.
   PubMed Web of Science ®Google Scholar
• Ohlsson-Nevo E, Hiyoshi A, Noren P, et al. The Swedish RAND-36: psychometric characteristics and reference data from the Mid-Swed health survey. J Patient Rep Outcomes. 2021;5(1):66.
   PubMedGoogle Scholar
• Bell ML, Fairclough DL, Fiero MH, et al. Handling missing items in the Hospital Anxiety and Depression Scale (HADS): a simulation study. BMC Res Notes. 2016;9(1):479.
   PubMedGoogle Scholar
• Gough BA, Hudson P. Psychometric properties of the Hospital Anxiety and Depression Scale in family caregivers of palliative care patients. J Pain Symptom Manage. 2009;37(5):797–806.
   PubMed Web of Science ®Google Scholar
• American Association of Retired Persons Public Policy Institute. 2022. Caregiving in the US 2020: American Association of Retired Persons Public Policy Institute. Available from: https://www.caregiving.org/wp-content/uploads/2021/01/full-report-caregiving-in-the-united-states-01-21.pdf
   Google Scholar
• Geng HM, Chuang DM, Yang F, et al. Prevalence and determinants of depression in caregivers of cancer patients: a systematic review and meta-analysis. Medicine. 2018;97(39):e11863.
   PubMed Web of Science ®Google Scholar
• Ditlevsen DN, Elklit A. The combined effect of gender and age on post traumatic stress disorder: do men and women show differences in the lifespan distribution of the disorder? Ann Gen Psychiatr. 2010;9:32.
   PubMed Web of Science ®Google Scholar
• Johansson R, Carlbring P, Heedman A, et al. Depression, anxiety and their comorbidity in the swedish general population: point prevalence and the effect on health-related quality of life. PeerJ. 2013;1:e98.
   PubMed Web of Science ®Google Scholar
• El-Jawahri A, Greer JA, Park ER, et al. Psychological distress in bereaved caregivers of patients with advanced cancer. J Pain Symptom Manag. 2021;61(3):488–494.
   PubMed Web of Science ®Google Scholar
• Ge LX, Mordiffi SZ. Factors associated with higher caregiver burden among family caregivers of elderly cancer patients a systematic review. Cancer Nurs. 2017;40(6):471–478.
   PubMed Web of Science ®Google Scholar
• Kim Y, Spillers RL, Hall DL. Quality of life of family caregivers 5 years after a relative’s cancer diagnosis: follow-up of the national quality of life survey for caregivers. Psychooncology. 2012;21(3):273–281.
   PubMed Web of Science ®Google Scholar
• Jadalla A, Ginex P, Coleman M, et al. Family caregiver strain and burden a systematic review of evidence-based interventions when caring for patients with cancer. Clin J Oncol Nurs. 2020;24(1):31–50.
   PubMed Web of Science ®Google Scholar