1,183
Views
4
CrossRef citations to date
0
Altmetric
Original Research

Evaluating the impact of peer support and connection on the quality of life of patients with familial chylomicronemia syndrome

, , , , , , , & show all
Pages 497-505 | Received 19 Jun 2018, Accepted 24 Jul 2018, Published online: 05 Aug 2018

References

  • Brahm AJ, Hegele RA. Chylomicronaemia–current diagnosis and future therapies. Nat Rev Endocrinol. 2015 Jun;11(6):352–362. PubMed PMID: 25732519.
  • Burnett JR, Hooper AJ, Hegele RA. Familial lipoprotein lipase deficiency. Seattle: University of Washington. 2017 June 22.
  • Davidson M, Stevenson M, Hsieh A, et al. The burden of familial chylomicronemia syndrome: results from the global IN-FOCUS study. J Clin Lipidol. 2018 Apr 26. DOI:10.1016/j.jacl.2018.04.009. PubMed PMID: 29784572.
  • Gaudet D, Blom D, Bruckert E, et al. Acute pancreatitis is highly prevalent and complications can be fatal in patients with familial chylomicronemia: results from a survey of lipidologist. J Clin Lipidol. 2016;10(3):680–681.
  • Blom DJ, O’Dea L, Digenio A, et al. Characterizing familial chylomicronemia syndrome: baseline data of the APPROACH study. J Clin Lipidol. 2018. DOI:10.1016/j.jacl.2018.05.013.
  • Nawaz H, Koutroumpakis E, Easler J, et al. Elevated serum triglycerides are independently associated with persistent organ failure in acute pancreatitis. Am J Gastroenterol. 2015 Oct;110(10):1497–1503. PubMed PMID: 26323188.
  • Gaudet D, De Wal J, Tremblay K, et al. Review of the clinical development of alipogene tiparvovec gene therapy for lipoprotein lipase deficiency. Atherosclerosis Supplements. 2010 Jun;11(1):55–60. PubMed PMID: 20427244; eng.
  • Williams L, Rhodes KS, Karmally W, et al. Familial chylomicronemia syndrome: bringing to life dietary recommendations throughout the life span. J Clin Lipidol. 2018 Apr 27. DOI:10.1016/j.jacl.2018.04.010. PubMed PMID: 29804909.
  • Tehrani AM, Farajzadegan Z, Rajabi FM, et al. Belonging to a peer support group enhance the quality of life and adherence rate in patients affected by breast cancer: A non-randomized controlled clinical trial. Journal Research Medical Sciences: Official Journal Isfahan University Medical Sciences. 2011 May;16(5):658–665. PubMed PMID: 22091289; PubMed Central PMCID: PMCPMC3214378. eng
  • Monroe A, Nakigozi G, Ddaaki W, et al. Qualitative insights into implementation, processes, and outcomes of a randomized trial on peer support and HIV care engagement in Rakai, Uganda. BMC Infect Dis. 2017 Jan 10;17(1):54. PubMed PMID: 28068935; PubMed Central PMCID: PMCPMC5223463.
  • Bogart KR, Irvin VL. Health-related quality of life among adults with diverse rare disorders. Orphanet J Rare Dis. 2017 Dec 7;12(1):177. PubMed PMID: 29212508; PubMed Central PMCID: PMCPMC5719717.
  • Wilson LM, Cross RR, Duell PB. Reduced psychological distress in familial chylomicronemia syndrome after patient support group intervention. J Clin Lipidol. 2018 Jan-Feb;12(1):240–242. PubMed PMID: 29195809.
  • Cruwys T, Alexander Haslam S, Dingle GA, et al. Feeling connected again: interventions that increase social identification reduce depression symptoms in community and clinical settings. J Affect Disord. 2014 Apr;159:139–146. PubMed PMID: 24679402.
  • Doosje B, Ellemers N, Spears R. Perceived intragroup variability as a function of group status and identification. J Exp Soc Psychol. 1995;31(5):410–436.
  • Rosenberg M. Society and the adolescent self-image. Princeton, NJ: Princeton university press; 1965.
  • Doyle M. Peer support and mentorship in a US rare disease community: findings from the cystinosis in emerging adulthood study. Patient. 2015 Feb;8(1):65–73. . PubMed PMID: 25231828.
  • Davidson M, Stevenson M, Hsieh A, et al. The burden of familial chylomicronemia syndrome: interim results from the IN-FOCUS study. Expert Rev Cardiovasc Ther. 2017 May;15(5):415–423. PubMed PMID: 28338353.
  • Lauder W, Mummery K, Jones M, et al. A comparison of health behaviours in lonely and non-lonely populations. Psychol Health Med. 2006 May;11(2):233–245. PubMed PMID: 17129911.
  • Bodenheimer T, Lorig K, Holman H, et al. Patient self-management of chronic disease in primary care. Jama. 2002 Nov 20;288(19):2469–2475. PubMed PMID: 12435261; eng.
  • Funnell M, Anderson R. Empowerment and self-management of diabetes. Clinical Diabetes. 2004; 22(3):123-127.
  • Holt-Lunstad J, Smith TB, Layton JB. Social relationships and mortality risk: a meta-analytic review. PLoS Med. 2010 Jul 27;7(7):e1000316. PubMed PMID: 20668659; PubMed Central PMCID: PMCPMC2910600. eng.
  • House JS, Landis KR, Umberson D. Social relationships and health. Science (New York, NY). 1988 Jul 29;241(4865):540–545. PubMed PMID: 3399889; eng.
  • Rico-Uribe LA, Caballero FF, Olaya B, et al. Loneliness, social networks, and health: a cross-sectional study in three countries. PLoS One. 2016;11(1):e0145264. PubMed PMID: 26761205; PubMed Central PMCID: PMCPMC4711964

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.