Burden, Quality of Life, and Palliative Care for Family Caregivers of Individuals with Advanced Liver Disease: a Systematic Literature Review

Centers for Disease Control and Prevention: National Center for Health Statistics. Cdc.gov/nchs/fastats/liver-disease.htm. Accessed October 2021 Gomez EV, Rodriguez YS, Bertot LC, et al. The natural history of compensated HCV-related cirrhosis: a prospective long-term study. J Hepatol. 2013;58(3):434–44. Kwong A, Kim WR, Lake JR, et al. OPTN/SRTR 2018 annual data report: liver. Am J Transplant. 2020;20(Suppl s1):193–299. U.S. Department of Health and Human Services aUSDoL. The future supply of long-term care workers in relation to the aging baby boom generation: report to Congress. Washington, DC: Office of the Assistant Secretary for Planning and Evaluation2003. Rabiee A, Ximenes RO, Nikayin S, Hickner A, Juthani P, Rosen RH, Garcia-Tsao G. Factors associated with health-related quality of life in patients with cirrhosis: a systematic review. Liver Int. 2021;41(1):6–15. Hansen L, Chang M, Lee C, Hiatt S, Dieckmann NF, Lyons K. Physical and mental quality of life in patients with end-stage liver disease and their informal caregivers. Clin Gasterenterol Hepatol. 2020(in press). https://doi.org/10.1016/j.cgh.2020.04.014. This dyadic (n = 132 dyads) cross-sectional study identified characteristics of patients with end-stage liver disease and their family caregivers that were associated with quality of life. Findings showed: (1) high levels of uncertainty were associated with worse physical and mental quality of life for patients and caregivers; (2) refractory ascites was associated with worse physical quality of life for both of them; (3) a history of hepatic encephalopathy was associated with worse physical quality of life for patients; and (4) relationship quality was associated with mental quality of life for patients. Dyadic research is needed to gain knowledge on how to optimize health outcomes for both members of the patient-caregiver dyad. Kelley AS, Morrison RS. Palliative care for the seriously ill. N Engl J Med. 2015;373(8):747–55. Low JTS, Rohde G, Pittordou K, Candy B, Davis S, Marshall A, et al. Supportive and palliative care in people with cirrhosis: International systematic review of the perspective of patients, family members and health professionals. J Hepatol 2018;69(6):1260–73. https://doi.org/10.1016/j.jhep.2018.08.028. This systematic review employed three major biomedical databases to identify articles about patient, family, and healthcare professional perspectives on the provision of care in cirrhosis, which were rigorously appraised by the investigators. Nineteen studies were identified, showing that patients and families lacked information and understanding of cirrhosis, healthcare professionals struggled communicating with patients and families, and general practitioners lacked confidence to discuss prognosis and care preferences with patients and families. Palliative care was cited as needing to be integrated earlier into community and specialty practices for this population. Shamseer L, Moher D, Clarke M, et al. Preferred reporting items for systematic review and meta-analysis protocols (PRISMA-P) 2015: elaboration and explanation. BMJ. 2015;350:g7647. Ouzzani M, Hammady H, Fedorowicz Z, Elmagarmid A. Rayyan-a web and mobile app for systematic reviews. Syst Rev. 2016;5(1):210. Bailey DE Jr, Hendrix CC, Steinhauser KE, et al. Randomized trial of an uncertainty self-management telephone intervention for patients awaiting liver transplant. Patient Educ Couns. 2017;100(3):509–17. Bajaj JS, Ellwood M, Ainger T, et al. Mindfulness-based stress reduction therapy improves patient and caregiver-reported outcomes in cirrhosis. Clin Transl Gastroenterol. 2017;8(7):e108. Kimbell B, Murray SA, Byrne H, Baird A, Hayes PC, MacGilchrist A, et al. Palliative care for people with advanced liver disease: A feasibility trial of a supportive care liver nurse specialist. Palliat Med. 2018;32(5):919–29. https://doi.org/10.1177/0269216318760441. This prospective, single-arm pilot study (n = 47 patients and n = 27 family caregivers) examined feasibility and acceptability of a six-month longitudinal nurse-led palliative and supportive care intervention. The intervention was feasible, acceptable, and the recruitment and outcome measurement procedures will be refined and incorporated into a future randomized controlled trial. Verma M, Kosinski AS, Volk ML, et al. Introducing palliative care within the treatment of end-stage liver disease: the study protocol of a cluster randomized controlled trial. J Palliat Med. 2019;22(S1):34–43. Chen HM, Shih FJ, Chang CL, Lai IH, Shih FJ, Hu RH. Caring for overseas liver transplant recipients: Taiwan primary family caregivers’ experiences in mainland China. Transplant Proc. 2010;42(10):3921–3. Cohen M, Katz D, Baruch Y. Stress among the family caregivers of liver transplant recipients. Prog Transplant. 2007;17(1):48–53. Bolden L, Wicks MN. Predictors of mental health, subjective burden, and rewards in family caregivers of patients with chronic liver disease. Arch Psychiatr Nurs. 2010;24(2):89–103. Meltzer LJ, Rodrigue JR. Psychological distress in caregivers of liver and lung transplant candidates. J Clin Psychol Med Settings. 2001;8(3):173–80. Malik P, Kohl C, Holzner B, et al. Distress in primary caregivers and patients listed for liver transplantation. Psychiatry Res. 2014;215(1):159–62. Hansen L, Rosenkranz SJ, Wherity K, Sasaki A. Living with hepatocellular carcinoma near the end of life: family caregivers’ perspectives. Oncol Nurs Forum. 2017;44(5):562–70. Hudson B, Hunt V, Waylen A, McCune CA, Verne J, Forbes K. The incompatibility of healthcare services and end-of-life needs in advanced liver disease: A qualitative interview study of patients and bereaved carers. Palliat Med. 2018;32(5):908–18. https://doi.org/10.1177/0269216318756222. This cross-sectional qualitative study explored end-of-life needs of people with liver disease (n = 12) and their family caregivers (n = 5), how well existing services meet their needs, and attitudes toward palliative care. The study found that available resources to the study population do not match the needs that exist near the end of life. Dominguez-Cabello E, Perez-San-Gregorio MA, Martin-Rodriguez A, Perez-Bernal J. Comparison of anxious and depressive symptomatology among pretransplant hepatic patients and their relatives. Transplant Proc. 2010;42(8):2962–3. Heyink J, Tymstra T. Liver transplantation: the shadow side. Fam Pract. 1990;7(3):233–7. Goetzinger AM, Blumenthal JA, O’Hayer CV, et al. Stress and coping in caregivers of patients awaiting solid organ transplantation. Clin Transplant. 2012;26(1):97–104. Shih W-MJ, Hsiao P-J, Chen M-L, Lin M-H. Experiences of family of patient with newly diagnosed advanced terminal stage hepatocellular cancer. Asian Pac J Cancer Prev. 2013;14(8):4655–60. Roth K, Lynn J, Zhong Z, Borum M, Dawson NV. Dying with end stage liver disease with cirrhosis: insights from SUPPORT. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. J Am Geriatr Soc. 2000;48(5 Suppl):S122-130. Bajaj JS, Wade JB, Gibson DP, et al. The multi-dimensional burden of chirrosis and hepatic encephalopathy on patients and caregivers. Am J Gastroenterol. 2011;106(9):1646–53. Rakoski MO, McCammon RJ, Piette JD, Iwashyna TJ. Burden of cirrhosis on older Americans and their families: analysis of the health and retirement study. Hepatology. 2012;55(1):184–91. Chen H-M, Hu R-H, Shih F-J, Shih F-J. Dilemmas across different overseas liver transplant stages: Taiwan transplant recipient families’ perspectives. Transplant Proc. 2012;44(2):539–43. Chen HM, Jong Shih F, Chang CL, Lai IH, Shih FJ, Hu RH. Caring for overseas liver transplant recipients: Taiwan primary family caregivers’ experiences in mainland China. Transplant Proc. 2010;42(10):3921–3. Kunzler-Heule P, Beckmann S, Mahrer-Imhof R, Semela D, Handler-Schuster D. Being an informal caregiver for a relative with liver cirrhosis and overt hepatic encephalopathy: a phenomenological study. J Clin Nurs. 2016;25(17–18):2559–68. Kimbell B, Boyd K, Kendall M, Iredale J, Murray SA. Managing uncertainty in advanced liver disease: a qualitative, multiperspective, serial interview study. BMJ Open. 2015;5(11):e009241–e009241. Montagnese S, Amato E, Schiff S, et al. A patients’ and caregivers’ perspective on hepatic encephalopathy. Metab Brain Dis. 2012;27(4):567–72. Miyazaki ET, dos Santos RJ, Miyazaki MC, et al. Patients on the waiting list for liver transplantation: caregiver burden and stress. Liver Transplant. 2010;16(10):1164–8. Hansen L, Press N, Rosenkranz SJ, et al. Life-sustaining treatment decisions in the ICU for patients with ESLD: a prospective investigation. Res Nurs Health. 2012;35(5):518–32. Hansen L, Yan Y, Rosenkranz SJ. The power of the liver transplant waiting list: a case presentation. Am J Crit Care. 2014;23(6):510–5. Bolkhir A, Loiselle MM, Evon DM, Hayashi PH. Depression in primary caregivers of patients listed for liver or kidney transplantation. Prog Transplant. 2007;17(3):193–8. Rodrigue JR, Dimitri N, Reed A, Antonellis T, Hanto DW, Curry M. Quality of life and psychosocial functioning of spouse/partner caregives before and after liver transplantation. Clin Transplant. 2011;25(2):239–47. Pérez-San-Gregorio MA, Martín-Rodríguez A, Pérez-Bernal J. Influence of the psychological state of relatives on the quality of life of patients at 1 year after transplantation. Transplant Proc. 2008;40(9):3109–11. Beckmann S, Kunzler-Heule P, Biotti B, Spirig R. Mastering together the highs and lows: patients’ and caregivers’ perceptions of self-management in the course of liver transplantation. Prog Transplant. 2016;26(3):215–23. Lasker JN, Sogolow ED, Sharim RR. For better and for worse: family and friend’s responses to chronic liver disease. Illness Crisis Loss. 2005;13(3):249–66. Cipolletta S, Entilli L, Nucci M, Feltrin A, Germani G, Cillo U, et al. Psychosocial support in liver transplantation: A dyadic study with patients and their family caregivers Frontiers in Psychology. 2019;10(2304). https://doi.org/10.3389/fpsyg.2019.02304. This cross-sectional quantitative study examined perceived social support and dependency and their association with the psychological wellbeing of liver transplant patients (n = 51) and their family caregivers (n = 44). Perceived social support and dependency did not predict patient and caregiver symptoms and family strain was significantly associated with worsening of caregiver and patient wellbeing. These findings support the importance of evaluating both members of the dyad in liver transplantation. Donlan J, Ufere NN, Indriolo T, Jackson V, Chung RT, El-Jawahri A, et al. Patient and Caregiver Perspectives on Palliative Care in End-Stage Liver Disease. J Palliat Med. 2020. https://doi.org/10.1089/jpm.2020.0551. This cross-sectional qualitative study explored knowledge, perceptions, and preferences about palliative care of transplant-listed and transplant-ineligible patients with end-stage liver disease (n = 15) and their informal caregivers (n = 14). Participants had no or limited knowledge of palliative care and frequently associated it end-of-life care. Once provided a definition of palliative care, most participants thought that palliative care should be integrated early on into end-stage liver disease management. Lamba S, Murphy P, McVicker S, Harris Smith J, Mosenthal AC. 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