A Systematic Review of Quality of Life in Patients with Short Bowel Syndrome and Their Caregivers

References

• Massironi S, Cavalcoli F, Rausa E, Invernizzi P, Braga M, Vecchi M. Understanding short bowel syndrome: current status and future perspectives. Dig Liver Dis. 2020;52(3):253–261. doi:10.1016/j.dld.2019.11.013
   PubMedGoogle Scholar
• Hasosah M, Lemberg DA, Skarsgard E, Schreiber R. Congenital short bowel syndrome: a case report and review of the literature. Can J Gastroenterol. 2008;22(1):71–74. doi:10.1155/2008/590143
   PubMed Web of Science ®Google Scholar
• Short Bowel Syndrome - StatPearls - NCBI Bookshelf. Available from: https://www.ncbi.nlm.nih.gov/books/NBK536935/. Accessed August 21, 2023
   Google Scholar
• von Websky MW, Liermann U, Buchholz BM, et al. Short bowel syndrome in Germany. Estimated prevalence and standard of care. Chirurg. 2014;85(5):433–439. doi:10.1007/s00104-013-2605-x
   PubMed Web of Science ®Google Scholar
• Mizushima T, Udagawa E, Hasegawa M, et al. Etiologies and treatments of chronic intestinal failure-short bowel syndrome (SBS) in Japanese adults: a real-world observational study. Surg Today. 2022;52(9):1350–1357. doi:10.1007/s00595-022-02469-9
   PubMed Web of Science ®Google Scholar
• Bering J, DiBaise JK. Short bowel syndrome: complications and management. Nutr Clin Pract. 2023;38(Suppl 1):S46–S58. doi:10.1002/ncp.10978
   PubMedGoogle Scholar
• Pironi L, Konrad D, Brandt C, et al. Clinical classification of adult patients with chronic intestinal failure due to benign disease: an international multicenter cross-sectional survey. Clin Nutr. 2018;37(2):728–738. doi:10.1016/j.clnu.2017.04.013
   PubMed Web of Science ®Google Scholar
• Kelly DG, Tappenden KA, Winkler MF. Short bowel syndrome: highlights of patient management, quality of life, and survival. JPEN J Parenter Enteral Nutr. 2014;38(4):427–437. doi:10.1177/0148607113512678
   PubMed Web of Science ®Google Scholar
• Jeppesen PB, Shahraz S, Hopkins T, Worsfold A, Genestin E. Impact of intestinal failure and parenteral support on adult patients with short‐bowel syndrome: a multinational, noninterventional, cross‐sectional survey. J Parenter Enteral Nutr. 2022;46(7):1650–1659. doi:10.1002/jpen.2372
   PubMed Web of Science ®Google Scholar
• Beurskens-Meijerink J, Huisman-de Waal G, Wanten G. Evaluation of quality of life and caregiver burden in home parenteral nutrition patients: a cross sectional study. Clin Nutr ESPEN. 2020;37:50–57. doi:10.1016/j.clnesp.2020.03.023
   PubMed Web of Science ®Google Scholar
• Neumann ML, Allen JY, Ladner A, Kakani S, Weaver MS, Mercer DF. Exploring the impact of pediatric short bowel syndrome on parent well‐being using a disease‐specific pilot survey. Nutr Clin Pract. 2023;28:11008. doi:10.1002/ncp.11008
   Google Scholar
• Whoqol Group. The World Health Organization quality of life assessment (WHOQOL): Position paper from the World Health Organization. Soc Sci Med. 1995;41(10):1403–1409. doi:10.1016/0277-9536(95)00112-K
   PubMed Web of Science ®Google Scholar
• Pederiva F, Khalil B, Morabito A, Wood S. Impact of short bowel syndrome on quality of life and family: the patient’s perspective. Eur J Pediatr Surg. 2019;29(02):196–202. doi:10.1055/s-0037-1621737
   PubMedGoogle Scholar
• Belcher E, Mercer D, Raphael BP, Salinas GD, Stacy S, Tappenden KA. Management of short-bowel syndrome: a survey of unmet educational needs among healthcare providers. JPEN J Parenter Enteral Nutr. 2022;46(8):1839–1846. doi:10.1002/jpen.2388
   PubMed Web of Science ®Google Scholar
• Matarese LE, Jeppesen PB, O’Keefe SJD. Short bowel syndrome in adults: the need for an interdisciplinary approach and coordinated care. JPEN J Parenter Enteral Nutr. 2014;38(1 Suppl):60S–64S. doi:10.1177/0148607113518946
   PubMedGoogle Scholar
• Belza C, Ungar WJ, Avitzur Y, Stremler R, Fehlings D, Wales PW. Carrying the Burden: Informal care requirements by caregivers of children with intestinal failure receiving home parenteral nutrition. J Pediatr. 2022;250:75–82.e3. doi:10.1016/j.jpeds.2022.05.049
   PubMed Web of Science ®Google Scholar
• Aromataris E, Lockwood C, Porritt K, Pilla B, Jordan Z, editors. JBI Manual for Evidence Synthesis. JBI; 2024. Available from: https://synthesismanual.jbi.global. 10.46658/JBIMES-24-01
   Google Scholar
• Ballinger R, Macey J, Lloyd A, Chen K. PIH65 Impact On Carers Of Paediatric Patients Receiving Parenteral Support For Short Bowel Syndrome-Associated Intestinal Failure. Value Health. 2019;22:S639. doi:10.1016/j.jval.2019.09.1244
   Web of Science ®Google Scholar
• Dai R, Xiaohong G. Study on health-related quality of life in patients with short bowel syndrome and its influencing factors. Chinese J of GeneSur. 2016;106:486–489.
   Google Scholar
• Ballinger R, Macey J, Lloyd A, et al. Measurement of utilities associated with parenteral support requirement in patients with short bowel syndrome and intestinal failure. Clin. Ther. 2018;40(11):1878–1893.e1. doi:10.1016/j.clinthera.2018.09.009
   PubMed Web of Science ®Google Scholar
• Carlsson E, Bosaeus I, Nordgren S. Quality of life and concerns in patients with short bowel syndrome. Clin Nutr. 2003;22(5):445–452. doi:10.1016/S0261-5614(03)00042-6
   PubMed Web of Science ®Google Scholar
• Carvalho AL, Sicchieri JMF, Marchini JS, Santos MAD, Navarro AM. Qualidade de vida na síndrome do intestino curto: em um único centro. Medicina. 2012;45(3):329–336. doi:10.11606/issn.2176-7262.v45i3p329-336
   Google Scholar
• Edge H, Hurrell R, Bianchi A, et al. Caregiver evaluation and satisfaction with autologous bowel reconstruction in children with short bowel syndrome. J Pediatr Gastroenterol Nutr. 2012;54(4):510–515. doi:10.1097/MPG.0b013e3182369dc8
   PubMed Web of Science ®Google Scholar
• Jeppesen PB, Pertkiewicz M, Forbes A, et al. Quality of life in patients with short bowel syndrome treated with the new glucagon-like peptide-2 analogue teduglutide – analyses from a randomised, placebo-controlled study. Clin Nutr. 2013;32(5):713–721. doi:10.1016/j.clnu.2013.03.016
   PubMed Web of Science ®Google Scholar
• Joly F, Quilliot D, Chambrier C, et al. Equative: quality of life in adult patients with short bowel syndrome treated by teduglutide, a French real-world study. Clin Nutr ESPEN. 2021:46:S665. doi:10.1016/j.clnesp.2021.09.346
   Google Scholar
• Kalaitzakis E, Carlsson E, Josefsson A, Bosaeus I. Quality of life in short-bowel syndrome: impact of fatigue and gastrointestinal symptoms. Scand J Gastroenterol. 2008;43(9):1057–1065. doi:10.1080/00365520802078325
   PubMed Web of Science ®Google Scholar
• Lachaine J, Gouault Laliberté A, Miron A, Xenopoulos A. TIME TRADE OFF STUDY FOR PARENTERAL SUPPORT IN SHORT BOWEL SYNDROME IN CANADA. Value Health. 2016;19(3):A251. doi:10.1016/j.jval.2016.03.999
   Web of Science ®Google Scholar
• Nordsten CB, Molsted S, Bangsgaard L, et al. High parenteral support volume is associated with reduced quality of life determined by the short‐bowel syndrome quality of life scale in nonmalignant intestinal failure patients. J Parenteral Enteral Nutr. 2021;45(5):926–932. doi:10.1002/jpen.1958
   PubMed Web of Science ®Google Scholar
• Olieman JF, Penning C, Poley MJ, EMWJ U, Hop WCJ, Tibboel D. Impact of infantile short bowel syndrome on long-term health-related quality of life: a cross-sectional study. Journal of Pediatric Surgery. 2012;47(7):1309–1316. doi:10.1016/j.jpedsurg.2012.01.005
   PubMed Web of Science ®Google Scholar
• Silva R, Guerra P, Rocha A, et al. Clinical, economic, and humanistic impact of short-bowel syndrome/chronic intestinal failure in Portugal (PARENTERAL Study). GE Port J Gastroenterol. 2022:1–12. doi:10.1159/000526059
   Google Scholar
• O’Neill JK, O’Neill PJ, Goth-Owens T, Horn B, Cobb LM. Care-giver evaluation of anti-gastroesophageal reflux procedures in neurologically impaired children: what is the real-life outcome?. J Pediatr Surg. 1996;31(3):375–380. doi:10.1016/s0022-3468(96)90741-1
   PubMed Web of Science ®Google Scholar
• Patel AA, Donegan D, Albert T. The 36-item short form. J Am Acad Orthop Surg. 2007;15(2):126–134. doi:10.5435/00124635-200702000-00007
   PubMed Web of Science ®Google Scholar
• Ware JJ, Kosinski M, Keller SD. A 12-Item Short-form health survey: Construction of scales and preliminary tests of reliability and validity. Med Care. 1996;34(3):220–233. doi:10.1097/00005650-199603000-00003
   PubMed Web of Science ®Google Scholar
• Varni JW, Seid M, Kurtin PS. PedsQL 4.0: reliability and validity of the pediatric quality of life inventory version 4.0 generic core scales in healthy and patient populations. Med Care. 2001;39(8):800–812. doi:10.1097/00005650-200108000-00006
   PubMed Web of Science ®Google Scholar
• Berghöfer P, Fragkos KC, Baxter JP, et al. Development and validation of the disease-specific Short Bowel Syndrome-Quality of Life (SBS-QoLTM) scale. Clin Nutr. 2013;32(5):789–796. doi:10.1016/j.clnu.2012.12.001
   PubMed Web of Science ®Google Scholar
• Aaronson NK, Ahmedzai S, Bergman B, et al. The European organization for research and treatment of cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology. J Natl Cancer Inst. 1993;85(5):365–376. doi:10.1093/jnci/85.5.365
   PubMed Web of Science ®Google Scholar
• Baxter JP, Fayers PM, McKinlay AW. The clinical and psychometric validation of a questionnaire to assess the quality of life of adult patients treated with long-term parenteral nutrition. JPEN J Parenter Enteral Nutr. 2010;34(2):131–142. doi:10.1177/0148607109348612
   PubMed Web of Science ®Google Scholar
• Chen C, Zhu D, Zhao Z, Ye X. Quality of life assessment instruments in adult patients receiving home parenteral and enteral nutrition: a scoping review. Nutr Clin Pract. 2022;37(4):811–824. doi:10.1002/ncp.10848
   PubMed Web of Science ®Google Scholar
• Winkler M, Tappenden K. Epidemiology, survival, costs, and quality of life in adults with short bowel syndrome. Nutr Clin Pract. 2023;38 Suppl 1:S17-S26. doi:10.1002/ncp.10964
   Web of Science ®Google Scholar
• Harris RJ, Thomas B, Griffiths J, et al. Increased uptake and new therapies are needed to avert rising hepatitis C-related end stage liver disease in England: modelling the predicted impact of treatment under different scenarios. J Hepatol. 2014;61(3):530–537. doi:10.1016/j.jhep.2014.05.008
   PubMed Web of Science ®Google Scholar
• Winkler MF, Smith CE. The Impact of Long-Term Home Parenteral Nutrition on the Patient and the Family: achieving Normalcy in Life. J Infus Nurs. 2015;38(4):290–300. doi:10.1097/NAN.0000000000000112
   PubMedGoogle Scholar
• Winkler MF, Ross VM, Piamjariyakul U, Gajewski B, Smith CE. Technology dependence in home care: impact on patients and their family caregivers. Nutr Clin Pract. 2006;21(6):544–556. doi:10.1177/0115426506021006544
   PubMedGoogle Scholar
• Smith CE, Moushey L, Ross JA, Gieffer C. Responsibilities and reactions of family caregivers of patients dependent on total parenteral nutrition at home. Public Health Nurs. 1993;10(2):122–128. doi:10.1111/j.1525-1446.1993.tb00035.x
   PubMed Web of Science ®Google Scholar
• Smith CE. Quality of life in long-term total parenteral nutrition patients and their family caregivers. JPEN J Parenter Enteral Nutr. 1993;17(6):501–506. doi:10.1177/0148607193017006501
   PubMed Web of Science ®Google Scholar
• Gottrand F, Staszewski P, Colomb V, et al. Satisfaction in different life domains in children receiving home parenteral nutrition and their families. J Pediatr. 2005;146(6):793–797. doi:10.1016/j.jpeds.2005.01.034
   PubMed Web of Science ®Google Scholar
• Kim ES, Keam SJ. Teduglutide: a Review in Short Bowel Syndrome. Drugs. 2017;77(3):345–352. doi:10.1007/s40265-017-0703-7
   PubMed Web of Science ®Google Scholar
• Rosete BE, Wendel D, Horslen SP. Teduglutide for pediatric short bowel syndrome patients. Expert Rev Gastroenterol Hepatol. 2021;15(7):727–733. doi:10.1080/17474124.2021.1913052
   PubMed Web of Science ®Google Scholar
• Sowerbutts AM, Jones D, Lal S, Burden S. Quality of life in patients and in family members of those receiving home parenteral support with intestinal failure: a systematic review. Clin Nutr. 2021;40(5):3210–3220. doi:10.1016/j.clnu.2021.02.009
   PubMed Web of Science ®Google Scholar
• Jeppesen PB, Pertkiewicz M, Messing B, et al. Teduglutide reduces need for parenteral support among patients with short bowel syndrome with intestinal failure. Gastroenterology. 2012;143(6):1473–1481.e3. doi:10.1053/j.gastro.2012.09.007
   PubMed Web of Science ®Google Scholar
• Huang J, yan LX, Peng WZ, Kui MY. Quality of life status and influencing factors among patients with deep vein thrombosis. PPA. 2022;16:949–956. doi:10.2147/PPA.S353128
   Google Scholar
• Vermunt LC, Buysse CM, Joosten KF, et al. Self-esteem in children and adolescents after septic shock caused by Neisseria meningitidis: scars do matter. J Adolesc Health. 2008;42(4):386–393. doi:10.1016/j.jadohealth.2007.09.026
   PubMed Web of Science ®Google Scholar
• Juul K, Prieto L. Quality of Life with an Intestinal Stoma. Seminars Colon Rectal Surg. 2008;19(3):167–173. doi:10.1053/j.scrs.2008.07.006
   Google Scholar
• Dabirian A, Yaghmaei F, Rassouli M, Tafreshi MZ. Quality of life in ostomy patients: a qualitative study. Patient Prefer Adherence. 2010;5:1–5. doi:10.2147/PPA.S14508
   PubMed Web of Science ®Google Scholar