1,101
Views
29
CrossRef citations to date
0
Altmetric
Depression and anxiety

“…I've said I wish I was dead, you'd be better off without me”: A systematic review of people's experiences of living with severe asthma

, BPharm (Hons), , MBBS, PhD, , BSc, PhD, , BSc (Hons), MA, , MA, MPhil, PhD, , BPharm, PhD & , BA (Hons), PhD show all
Pages 311-322 | Received 04 Nov 2017, Accepted 09 Mar 2018, Published online: 04 Apr 2018

References

  • Global Initiative for Asthma (GINA). Global strategy for asthma management and prevention. 2017. Available from: www.ginasthma.org.
  • Chanez P, Humbert M. Asthma: still a promising future? Eur Respir Rev. 2014;23(134):405–7. doi:10.1183/09059180.00009614.
  • Vos T, Flaxman AD, Naghavi M, Lozano R, Michaud C, Ezzati M, et al. Years lived with disability (YLDs) for 1160 sequelae of 289 diseases and injuries 1990–2010: a systematic analysis for the Global Burden of Disease Study 2010. Lancet 2012;380(9859):2163–96. Epub 2012/12/19. doi:10.1016/s0140-6736(12)61729-2. PubMed PMID:23245607.
  • Chung KF, Wenzel SE, Brozek JL, Bush A, Castro M, Sterk PJ, et al. International ERS/ATS guidelines on definition, evaluation and treatment of severe asthma. Eur Respir J. 2014;43(2):343–73. Epub 2013/12/18. doi:10.1183/09031936.00202013. PubMed PMID:24337046.
  • Israel E, Reddel Hk. Severe and difficult-to-treat asthma in adults. New Engl J Med 2017; 377:965–76.
  • Hekking PP, Wener RR, Amelink M, Zwinderman AH, Bouvy ML, Bel EH. The prevalence of severe refractory asthma. J Allergy Clin Immunol. 2015;135(4):896–902. Epub 2014/12/03. doi:10.1016/j.jaci.2014.08.042. PubMed PMID:25441637.
  • Sweeney J, Patterson CC, Menzies-Gow A, Niven RM, Mansur AH, Bucknall C, et al. Comorbidity in severe asthma requiring systemic corticosteroid therapy: cross-sectional data from the Optimum Patient Care Research Database and the British Thoracic Difficult Asthma Registry. Thorax. 2016;71(4):339–46. Epub 2016/01/29. doi:10.1136/thoraxjnl-2015-207630. PubMed PMID:26819354.
  • Sullivan SD, Rasouliyan L, Russo PA, Kamath T, Chipps BE. Extent, patterns, and burden of uncontrolled disease in severe or difficult-to-treat asthma. Allergy. 2007;62(2):126–33. Epub 2007/02/15. doi:10.1111/j.1398-9995.2006.01254.x. PubMed PMID:17298420.
  • McDonald VM, Gibson PG. Exacerbations of severe asthma. Clin Exp Allergy. 2012;42(5):670–7. Epub 2012/04/21. doi:10.1111/j.1365-2222.2012.03981.x. PubMed PMID:22515389.
  • Sadatsafavi M, Lynd L, Marra C, Carleton B, Tan WC, Sullivan S, et al. Direct health care costs associated with asthma in British Columbia. Can Respir J. 2010;17(2):74–80. PubMed PMID:20422063; PubMed Central PMCID:PMCPMC2866215.
  • Busse WW, Banks-Schlegel S, Wenzel SE. Pathophysiology of severe asthma. J Allergy Clin Immunol. 2000;106(6):1033–42. Epub 2000/12/12. doi: 10.1067/mai.2000.111307. PubMed PMID:11112883.
  • Canonica GW, Senna G, Mitchell PD, O'Byrne PM, Passalacqua G, Varricchi G. Therapeutic interventions in severe asthma. World Allergy Organ J. 2016;9:40. doi:10.1186/s40413-016-0130-3. PubMed PMID:27942351. PubMed Central PMCID:PMCPMC5125042.
  • Choo XN, Pavord ID. Morbidity associated with oral corticosteroids in patients with severe asthma. Thorax 2016;71(4):302–4. Epub 2016/02/24. doi:10.1136/thoraxjnl-2015-208242. PubMed PMID:26903592.
  • Heaney LG, Brightling CE, Menzies-Gow A, Stevenson M, Niven RM. Refractory asthma in the UK: cross-sectional findings from a UK multicentre registry. Thorax 2010;65(9):787–94. Epub 2010/09/02. doi:10.1136/thx.2010.137414. PubMed PMID: 20805172. PubMed Central PMCID:PMCPMC2975949.
  • Barnett-Page E, Thomas J. Methods for the synthesis of qualitative research: a critical review. BMC Med Res Methodol. 2009;9(1):59. doi:10.1186/1471-2288-9-59.
  • HealthTalk. [cited 10/09/17]. Available from: http://www.healthtalk.org/.
  • Noblit GW, Hare RD. Meta-ethnography: Synthesizing qualitative studies Newbury Park. California: Sage; 1988.
  • Thomas J, Harden A. Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Med Res Methodol. 2008;8:45. Epub 2008/07/12. doi:10.1186/1471-2288-8-45. PubMed PMID:18616818. PubMed Central PMCID:PMCPMC2478656.
  • Atkins S, Lewin S, Smith H, Engel M, Fretheim A, Volmink J. Conducting a meta-ethnography of qualitative literature: lessons learnt. BMC Med Res Methodol. 2008;8:21. Epub 2008/04/18. doi:10.1186/1471-2288-8-21. PubMed PMID:18416812. PubMed Central PMCID:PMCPMC2374791.
  • Pickles K, Eassey D, Reddel HK, Locock L, Kirkpatrick S, Smith L. “This illness diminishes me. What it does is like theft”: a qualitative meta-synthesis of people's experiences of living with asthma. Health Expect. 2017;21(1):23–40. Epub 2017/08/03. doi:10.1111/hex.12605. PubMed PMID:28768067.
  • Ross CJ, Williams BA, Low G, Vethanayagam D. Perceptions about self-management among people with severe asthma. J Asthma. 2010;47(3):330–6. Epub 2010/04/17. doi:10.3109/02770901003611462. PubMed PMID:20394519.
  • Hyland ME, Whalley B, Jones RC, Masoli M. A qualitative study of the impact of severe asthma and its treatment showing that treatment burden is neglected in existing asthma assessment scales. Qual Life Res. 2015;24(3):631–9. Epub 2014/09/10. doi:10.1007/s11136-014-0801-x. PubMed PMID:25201169.
  • Gamble J, Fitzsimons D, Lynes D, Heaney LG. Difficult asthma: people's perspectives on taking corticosteroid therapy. J Clin Nurs. 2007;16(3a):59–67. Epub 2007/05/24. doi:10.1111/j.1365-2702.2006.01750.x. PubMed PMID:17518870.
  • Health Experiences Research Group. Asthma topics. Oxford; 2015. [cited 31/7/17]. Available from: http://www.healthtalk.org/peoples-experiences/long-term-conditions/asthma/topics.
  • Moffat M, Cleland J, van der Molen T, Price D. Sub-optimal patient and physician communication in primary care consultations: its relation to severe and difficult asthma. Prim Care Respir J. 2006;15(3):159–65. Epub 2006/06/08. doi:10.1016/j.pcrj.2006.02.006. PubMed PMID:16757396.
  • Health Experiences Research Group. Jenny. Oxford:DIPEx; 2015. [cited 31/7/17]. Available from: http://www.healthtalk.org/peoples-experiences/chronic-health-issues/asthma/jenny.
  • Health Experiences Research Group. Jane Z. Oxford:DIPEx; 2015. [cited 31/7/17 31/7/17]. Available from: http://www.healthtalk.org/peoples-experiences/chronic-health-issues/asthma/jane-z.
  • Larsen PD, Lubkin IM. Chronic illness: impact and intervention. 7th ed. sudbury. Mass: Jones and Bartlett Publishers; 2009.
  • Naik AD, Dyer CB, Kunik ME, McCullough LB. Patient Autonomy for the Management of Chronic Conditions: A Two-Component Re-conceptualization. Am J Bioeth. 2009;9(2):23–30. doi:10.1080/15265160802654111. PubMed PMID:19180389. PubMed Central PMCID:PMCPMC2860530.
  • Heaton J, Räisänen U, Salinas M. ‘Rule your condition, don't let it rule you’: young adults’ sense of mastery in their accounts of growing up with a chronic illness. Sociol Health Illness. 2016;38(1):3–20. doi:10.1111/1467-9566.12298.
  • Pera PI. Living with diabetes: quality of care and quality of life. Patient Preference Adherence 2011;5:65–72. doi:10.2147/PPA.S16551. PubMed PMID:PMC3058603.
  • Wen H, Ralph Schumacher H, Li X, Gu J, Ma L, Wei H, et al. Comparison of expectations of physicians and patients with rheumatoid arthritis for rheumatology clinic visits: a pilot, multicenter, international study. Int J Rheum Dis. 2012;15(4):380–9. Epub 2012/08/18. doi:10.1111/j.1756-185X.2012.01752.x. PubMed PMID:22898218.
  • Wenzel SE, Brillhart S, Nowack K. An invisible disease: severe asthma is more than just “bad asthma”. Eur Respir J. 2017;50(3). pii:1701109. doi:10.1183/13993003.01109-2017.
  • Boston Scientific. Uncovering Asthma: Breathing A Fresh Perspective Into Managing Severe Asthma In Europe [1/8/17]. Available from: https://www.bostonscientific.com/content/dam/bostonscientific/BT/Uncovering_Asthma/PDF_Documents/The UncoveringAsthmaReport_ENG_230915.pdf.
  • Saeed S. Severe asthma in the workplace. Thorax. 2007 Mar;62(3):218.
  • Charmaz K. Loss of self: a fundamental form of suffering in the chronically ill. Sociol Health Illness. 1983;5(2):168–95. doi:10.1111/1467-9566.ep10491512.
  • Bury M. Chronic illness as biographical disruption. Sociol Health Illness. 1982;4(2):167–82. doi: 10.1111/1467-9566.ep11339939.
  • The palgrave handbook of social theory in health, illness and medicine. Basingstoke: Palgrave Macmillan; 2015.
  • Williams S. Chronic illness as biographical disruption or biographical disruption as chronic illness? Reflections on a core concept. Sociol Health Illness. 2000;22(1):40–67. doi:10.1111/1467-9566.00191.
  • Locock L, Ziébland S. Mike bury: biographical disruption and long-term and other health conditions. In: editors. The palgrave handbook of social theory in health, illness and medicine. London: Palgrave Macmillan UK; 2015. p. 582–98.
  • Severe Asthma in Ireland and Europe – A Patient's Perspective [1/8/17]. Available from: http://www.irishhealth.com/clin/documents/Severe-Asthma-Report.pdf.
  • Stavropoulou C. Non-adherence to medication and doctor–patient relationship: Evidence from a European survey. Patient Educ Couns. 83(1):7–13. doi:10.1016/j.pec.2010.04.039.
  • Jagosh J, Donald Boudreau J, Steinert Y, Macdonald ME, Ingram L. The importance of physician listening from the patients' perspective: enhancing diagnosis, healing, and the doctor-patient relationship. Patient Educ Couns. 2011;85(3):369–74. Epub 2011/02/22. doi:10.1016/j.pec.2011.01.028. PubMed PMID:21334160.
  • Schneider J, Kaplan SH, Greenfield S, Li W, Wilson IB. Better physician-patient relationships are associated with higher reported adherence to antiretroviral therapy in patients with HIV infection. J Gen Intern Med. 2004;19(11):1096–103. doi:10.1111/j.1525-1497.2004.30418.x. PubMed PMID:15566438. PubMed Central PMCID:PMCPMC1494791.
  • Haskard Zolnierek KB, DiMatteo MR. Physician communication and patient adherence to treatment: a meta-analysis. Med Care. 2009;47(8):826–34. doi:10.1097/MLR.0b013e31819a5acc. PubMed PMID:19584762. PubMed Central PMCID:PMCPMC2728700.
  • Campbell R, Pound P, Pope C, Britten N, Pill R, Morgan M, et al. Evaluating meta-ethnography: a synthesis of qualitative research on lay experiences of diabetes and diabetes care. Soc Sci Med. 2003;56(4):671–84. Epub 2003/02/01. PubMed PMID:12560003.
  • Ring N, Jepson R, Hoskins G, Wilson C, Pinnock H, Sheikh A, et al. Understanding what helps or hinders asthma action plan use: a systematic review and synthesis of the qualitative literature. Patient Educ Couns. 2011;85(2):e131–43. Epub 2011/03/15. doi:10.1016/j.pec.2011.01.025. PubMed PMID:21396793.
  • Reuben DB, Tinetti ME. Goal-oriented patient care — an alternative health outcomes paradigm. N Engl J Med. 2012;366(9):777–9. doi:10.1056/NEJMp1113631. PubMed PMID:22375966.
  • Toye F, Seers K, Allcock N, Briggs M, Carr E, Barker K. Meta-ethnography 25 years on: challenges and insights for synthesising a large number of qualitative studies. BMC Med Res Methodol. 2014;14(1):80. doi:10.1186/1471-2288-14-80.
  • Wenzel S. Severe asthma in adults. Am J Respir Crit Care Med. 2005;172(2):149–60. Epub 2005/04/26. doi:10.1164/rccm.200409-1181PP. PubMed PMID:15849323.
  • Taylor DR, Bateman ED, Boulet LP, Boushey HA, Busse WW, Casale TB, et al. A new perspective on concepts of asthma severity and control. Eur Respir J. 2008;32(3):545–54. Epub 2008/09/02. doi:10.1183/09031936.00155307. PubMed PMID:18757695.

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.