Register      Login
Australian Health Review Australian Health Review Society
Journal of the Australian Healthcare & Hospitals Association
RESEARCH ARTICLE (Open Access)

Should endometriosis be managed within a chronic disease framework? An analysis of national policy documents

Rebecca O’Hara A C , Heather Rowe A , Louise Roufeil B and Jane Fisher A
+ Author Affiliations
- Author Affiliations

A School of Public Health and Preventive Medicine, Monash University, Level 4, 553 St Kilda Road, Melbourne, Vic. 3004, Australia. Email: heather.rowe@monash.edu; jane.fisher@monash.edu

B School of Psychology, Charles Sturt University, Bathurst, NSW 2795, Australia. Email: lroufeil@csu.edu.au

C Corresponding author. Email: beck.ohara@monash.edu

Australian Health Review 42(6) 627-634 https://doi.org/10.1071/AH17185
Submitted: 7 August 2017  Accepted: 1 June 2018   Published: 10 August 2018

Journal Compilation © AHHA 2018 Open Access CC BY-NC-ND

Abstract

Objective The aim of this study was to determine whether endometriosis meets the definition for chronic disease in Australian policy documents.

Methods A qualitative case study approach was used to thematically analyse the definitions contained in Australian chronic disease policy documents and technical reports. The key themes were then compared with descriptions of endometriosis in peer-reviewed literature, clinical practice guidelines and expert consensus statements.

Results The search yielded 18 chronic disease documents that provided a definition or characteristics of chronic disease. The thematic analysis identified key elements of chronic diseases pertaining to onset, causation, duration, treatment, disease course and impact (individual and societal). A comparison with endometriosis descriptions indicated that endometriosis meets five of the six chronic disease key elements.

Conclusion In Australia, long-term and complex conditions are managed within a chronic disease framework and include mechanisms such as chronic disease management plans (CDMPs) to assist with coordination and management of these conditions. Because endometriosis has most of the characteristics of chronic disease, it could potentially be reframed as a chronic disease in endometriosis clinical practice guidelines and consensus statements. Further, the use of CDMPs may provide a mechanism to promote individualised care and multidisciplinary management of this chronic, enigmatic and debilitating disease.

What is known about the topic? In Australia, long-term complex diseases can be managed within a chronic disease framework that include mechanisms for coordinated care such as CDMPs and team care arrangements. Endometriosis is described as an inflammatory, progressive, relapsing and, for some women, debilitating condition, but is rarely described as a chronic disease in the clinical practice guidelines and consensus statements available in Australia.

What does this paper add? Endometriosis shares most of the characteristics of a chronic disease so may benefit from chronic disease management systems such as CDMPs.

What are the implications for practitioners? CDMPs may be a useful mechanism to coordinate and improve the effectiveness of care for women with endometriosis who experience sustained symptoms of endometriosis.

Additional keywords: chronic conditions, chronic disease management plan, chronic illness, endometriosis treatment.


References

[1]  World Health Organization (WHO). Noncommunicable diseases factsheet. Geneva: WHO; 2017. Available at: http://www.who.int/mediacentre/factsheets/fs355/en/ [verified 18 December 2017].

[2]  World Health Organization (WHO). Noncommunicable diseases. Geneva: WHO; 2017. Available at: http://www.who.int/topics/noncommunicable_diseases/en/ [verified 18 December 2017].

[3]  Department of Health. Chronic disease management: provider information. Canberra: Australian Government; 2014. Available at: http://www.health.gov.au/internet/main/publishing.nsf/Content/F0ABED13C55F6715CA257BF0001EDB18/$File/Fact%20Sheet%20-%20CDM%20-%20Provider%20Info.pdf [verified 21 July 2018].

[4]  Department of Health. Chronic disease management – individual allied health services under Medicare: patient information. Canberra: Australian Government; 2014. Available at: http://www.health.gov.au/internet/main/publishing.nsf/content/74EB0CF19603E7B7CA257BF0001FA204/$File/Fact%20Sheet%20-%20CDM%20-%20Individual%20Allied%20Health%20Services%20-%20Patient%20Info.pdf [verified 21 July 2018].

[5]  Harris MF, Jayasinghe UW, Taggart JR, Christl B, Proudfoot JG, Crookes PA, Beilby JJ, Davies GP. Multidisciplinary team care arrangements in the management of patients with chronic disease in Australian general practice. Med J Aust 2011; 194 236–9.

[6]  Wickramasinghe LK, Schattner P, Hibbert ME, Enticott JC, Georgeff MP, Russell GM. Impact on diabetes management of general practice management plans, team care arrangements and reviews. Med J Aust 2013; 199 261–5.
Impact on diabetes management of general practice management plans, team care arrangements and reviews.Crossref | GoogleScholarGoogle Scholar |

[7]  Zwar NA, Shortus T, Hermiz O, Burns J, Comino EJ, Harris M. Do multidisciplinary care plans result in better care for patients with type 2 diabetes? Aust Fam Physician 2007; 36 85–9.

[8]  Kennedy S, Bergqvist A, Chapron C, D’Hooghe T, Dunselman G, Greb R, Hummelshoj L, Prentice A, Saridogan E. ESHRE guideline for the diagnosis and treatment of endometriosis. Hum Reprod 2005; 20 2698–704.
ESHRE guideline for the diagnosis and treatment of endometriosis.Crossref | GoogleScholarGoogle Scholar |

[9]  Vermeulen N, De Bie B, Dunselman G. Information for women with endometriosis: patient version of the ESHRE guideline on management of women with endometriosis. Belgium: European Society of Human Reproduction and Embryology; 2014.

[10]  Dunselman GAJ, Vermeulen N, Becker C, Calhaz-Jorge C, D’Hooghe T, De Bie B, Heikinheimo O, Horne AW, Kiesel L, Nap A, Prentice A, Saridogan E, Soriano D, Nelen W. ESHRE guideline: management of women with endometriosis. Hum Reprod 2014; 29 400–12.
ESHRE guideline: management of women with endometriosis.Crossref | GoogleScholarGoogle Scholar |

[11]  Leyland N, Casper R, Laberge P, Singh S. Endometriosis diagnosis and management: SOGC clinical practice guideline. J Obstet Gynaecol Can 2010; 32 S1–S3.
Endometriosis diagnosis and management: SOGC clinical practice guideline.Crossref | GoogleScholarGoogle Scholar |

[12]  Koch J, Rowan K, Rombauts L, Yazdani A, Chapman M, Johnson N. Endometriosis and infertility – a consensus statement from ACCEPT (Australasian CREI Consensus Expert Panel on Trial evidence). Aust N Z J Obstet Gynaecol 2012; 52 513–22.
Endometriosis and infertility – a consensus statement from ACCEPT (Australasian CREI Consensus Expert Panel on Trial evidence).Crossref | GoogleScholarGoogle Scholar |

[13]  Merskey H, Bogduk N, editors. Classification of chronic pain. Washington D.C.: International Association for the Study of Pain; 2012.

[14]  Rogers A, Kennedy A, Bower P, Gardner C, Gately C, Lee V, Reeves D, Richardson G. The United Kingdom Expert Patients Programme: results and implications from a national evaluation. Med J Aust 2008; 189 S21

[15]  Music R. Endometriosis and self-management strategies. Women’s Health Med 2005; 2 38–9.
Endometriosis and self-management strategies.Crossref | GoogleScholarGoogle Scholar |

[16]  Barlow JH, Wright CC, Turner AP, Bancroft GV. A 12-month follow-up study of self-management training for people with chronic disease: are changes maintained over time? Br J Health Psychol 2005; 10 589–99.
A 12-month follow-up study of self-management training for people with chronic disease: are changes maintained over time?Crossref | GoogleScholarGoogle Scholar |

[17]  Thomas G. How to do your case study: a guide for students and researchers. London: Sage Publications; 2011.

[18]  Yin R. Case study research design and methods. 4th edn. Thousand Oaks, CA: SAGE Publications; 2009.

[19]  Bowen GA. Document analysis as a qualitative research method. Qual Res J 2009; 9 27–40.
Document analysis as a qualitative research method.Crossref | GoogleScholarGoogle Scholar |

[20]  Australian Health Ministers’ Advisory Council. National strategic framework for chronic conditions: second draft. Canberra: Australian Government; 2016. Available at: https://consultations.health.gov.au/population-health-and-sport-division/national-strategic-framework-for-chronic-condition/supporting_documents/Second%20draft%20National%20Strategic%20Framework%20for%20Chronic%20Conditions%20%20Online%20Public%20Consultation%20%20May%202016%20D16458639.PDF [verified 21 July 2018].

[21]  Australian Institute of Health and Welfare (AIHW). Chronic diseases and associated risk factors in Australia, 2001. Canberra: AIHW; 2002. Available at: http://www.aihw.gov.au/publication-detail/?id=6442467343 [verified 22 August 2016].

[22]  Australian Institute of Health and Welfare (AIHW). Chronic diseases and associated risk factors in Australia. Canberra: AIHW; 2006. Available at: https://www.aihw.gov.au/getmedia/8d7109d9-2a84-45b0-87d6-3efae9153832/cdarfa06.pdf.aspx?inline=true [verified 21 July 2018].

[23]  Australian Institute of Health and Welfare (AIHW). Premature mortality from chronic disease. Canberra: AIHW; 2010. Available at: https://www.aihw.gov.au/getmedia/ae1fb3d3-b3e3-41f2-a331-4e30d4383d4b/11897.pdf.aspx?inline=true [verified 21 July 2018].

[24]  Australian Institute of Health and Welfare (AIHW). Key indicators of progress for chronic disease and associated determinants: data report. Canberra: AIHW; 2011. Available at: http://www.aihw.gov.au/publication-detail/?id=10737419245 [verified 21 July 2018].

[25]  Australian Institute of Health and Welfare (AIHW). Contribution of chronic disease to the gap in adult mortality between Aboriginal and Torres Strait Islander and other Australians. Canberra: AIHW; 2011. Available at: https://www.aihw.gov.au/getmedia/79b73a27-c970-47f0-931b-32d7badade40/12304.pdf.aspx?inline=true [verified 21 July 2018].

[26]  Australian Institute of Health and Welfare (AIHW). Risk factors contributing to chronic disease. Canberra: AIHW; 2012. Available at: https://www.aihw.gov.au/getmedia/74121d1b-69ca-4a34-a08a-51b741ea26b2/12724.pdf.aspx?inline=true [verified 21 July 2018].

[27]  Australian Institute of Health and Welfare (AIHW). Australia’s health 2014. Canberra: AIHW; 2014. Available at: https://www.aihw.gov.au/getmedia/d2946c3e-9b94-413c-898c-aa5219903b8c/16507.pdf.aspx?inline=true [verified 21 July 2018].

[28]  Department of Health. Chronic disease management: patient information. Canberra: Australian Government; 2014. Available at: http://www.health.gov.au/internet/main/publishing.nsf/content/F17F6787B14E6CF1CA257BF0001B0AEC/$File/Fact%20Sheet%20-%20CDM%20-%20Patient%20Info%20-%20Feb%202014.pdf [verified 21 July 2018].

[29]  Department of Health. Chronic disease management – individual allied health services under Medicare: provider information. Canberra: Australian Government; 2014. Available at: http://www.health.gov.au/internet/main/publishing.nsf/content/22F660E959ABF390CA257BF0001F3CF3/$File/Fact_Sheet_CDM_Individual_Allied_Health_Services_Provider_Info_Feb_14.pdf [verified 21 July 2018].

[30]  Department of Health. Flexible fund guidelines: chronic disease prevention and service improvement flexible fund. Canberra: Australian Government; 2014. Available at: http://www.health.gov.au/internet/main/publishing.nsf/content/08998D199BEAAADECA257BF0001C1177/$File/guide.pdf [verified 19 July 2018].

[31]  Department of Health. Chronic conditions. Canberra: Australian Government; 2015. Available at: http://www.health.gov.au/internet/main/publishing.nsf/Content/chronic-disease [verified 22 August 2016].

[32]  Department of Human Services. Education guide – chronic disease GP management plans and team care arrangements. Canberra: Australian Government; 2016. Available at: https://www.humanservices.gov.au/health-professionals/enablers/education-guide-chronic-disease-gp-management-plans-and-team-care [verified 22 August 2016].

[33]  National Health and Hospitals Reform Commission. A healthier future for all Australians: final report. Canberra: Australian Government; 2009. Available at: http://apo.org.au/system/files/17921/apo-nid17921-49176.pdf [verified 19 July 2018].

[34]  National Public Health Partnership. Blueprint for nation-wide surveillance of chronic diseases and associated determinants. Melbourne: National Public Health Partnership; 2006. Available at: http://webarchive.nla.gov.au/gov/20140213205348/http://www.mbsonline.gov.au/internet/main/publishing.nsf/Content/pq-ncds-bluepr [verified 22 August 2016].

[35]  National Health Priority Action Council. National chronic disease strategy. Canberra: Australian Government Department of Health and Ageing; 2006. Available at: http://webarchive.nla.gov.au/gov/20141215061219/http://www.health.gov.au/internet/main/publishing.nsf/Content/pq-ncds-strat [verified 22 August 2016].

[36]  Johnson NP, Hummelshoj L, World Endometriosis Society Montpellier Consortium Consensus on current management of endometriosis. Hum Reprod 2013; 28 1552–68.
Consensus on current management of endometriosis.Crossref | GoogleScholarGoogle Scholar |

[37]  Ballweg ML. Big picture of endometriosis helps provide guidance on approach to teens: comparative historical data show endo starting younger, is more severe. J Pediatr Adolesc Gynecol 2003; 16 S21–6.
Big picture of endometriosis helps provide guidance on approach to teens: comparative historical data show endo starting younger, is more severe.Crossref | GoogleScholarGoogle Scholar |

[38]  Ek M, Roth B, Ekström P, Valentin L, Bengtsson M, Ohlsson B. Gastrointestinal symptoms among endometriosis patients – a case-cohort study. BMC Womens Health 2015; 15 59
Gastrointestinal symptoms among endometriosis patients – a case-cohort study.Crossref | GoogleScholarGoogle Scholar |

[39]  Huntington A, Gilmour JA. A life shaped by pain: women and endometriosis. J Clin Nurs 2005; 14 1124–32.
A life shaped by pain: women and endometriosis.Crossref | GoogleScholarGoogle Scholar |

[40]  De Graaff AA, D’Hooghe TM, Dunselman GA, Dirksen CD, Hummelshoj L, Simoens S. The significant effect of endometriosis on physical, mental and social wellbeing: results from an international cross-sectional survey. Hum Reprod 2013; 28 2677–85.
The significant effect of endometriosis on physical, mental and social wellbeing: results from an international cross-sectional survey.Crossref | GoogleScholarGoogle Scholar |

[41]  Gao X, Yeh YC, Outley J, Simon J, Botteman M, Spalding J. Health-related quality of life burden of women with endometriosis: a literature review. Curr Med Res Opin 2006; 22 1787–97.
Health-related quality of life burden of women with endometriosis: a literature review.Crossref | GoogleScholarGoogle Scholar |

[42]  Simoens S, Dunselman G, Dirksen C, Hummelshoj L, Bokor A, Brandes I, Brodszky V, Canis M, Colombo GL, DeLeire T, Falcone T, Graham B, Halis G, Horne A, Kanj O, Kjer JJ, Kristensen J, Lebovic D, Mueller M, Vigano P, Wullschleger M, D’Hooghe T. The burden of endometriosis: costs and quality of life of women with endometriosis and treated in referral centres. Hum Reprod 2012; 27 1292–9.
The burden of endometriosis: costs and quality of life of women with endometriosis and treated in referral centres.Crossref | GoogleScholarGoogle Scholar |

[43]  Cox H, Henderson L, Wood R, Cagliarini G. Learning to take charge: women’s experiences of living with endometriosis. Complement Ther Nurs Midwifery 2003; 9 62–8.
Learning to take charge: women’s experiences of living with endometriosis.Crossref | GoogleScholarGoogle Scholar |

[44]  Denny E. I never know from one day to another how I will feel: pain and uncertainty in women with endometriosis. Qual Health Res 2009; 19 985–95.
I never know from one day to another how I will feel: pain and uncertainty in women with endometriosis.Crossref | GoogleScholarGoogle Scholar |

[45]  Young K, Fisher J, Kirkman M. Women’s experiences of endometriosis: a systematic review and synthesis of qualitative research. J Fam Plann Reprod Health Care 2015; 41 225–34.
Women’s experiences of endometriosis: a systematic review and synthesis of qualitative research.Crossref | GoogleScholarGoogle Scholar |

[46]  Culley L, Law C, Hudson N, Denny E, Mitchell H, Baumgarten M, Raine-Fenning N. The social and psychological impact of endometriosis on women’s lives: a critical narrative review. Hum Reprod Update 2013; 19 625–39.
The social and psychological impact of endometriosis on women’s lives: a critical narrative review.Crossref | GoogleScholarGoogle Scholar |

[47]  Gilmour JA, Huntington A, Wilson HV. The impact of endometriosis on work and social participation. Int J Nurs Pract 2008; 14 443–8.
The impact of endometriosis on work and social participation.Crossref | GoogleScholarGoogle Scholar |

[48]  Peters KM, Wrigley P, Fraser IS. The cost of endometriosis in Australia. Poster Presentation at the 12th World Congress on Endometriosis, 30 April – 3 May 2014, Sao Paulo, Brazil. Vancouver: World Endometriosis Society; 2014.

[49]  House of Representatives Standing Committee on Health. Inquiry into chronic disease prevention and management in primary health care. Canberra: Commonwealth of Australia; 2016. Available at: http://www.aph.gov.au/Parliamentary_Business/Committees/House/Health/Chronic_Disease/Report [verified 29 June 2017].

[50]  Moradi M, Parker M, Sneddon A, Lopez V, Ellwood D. Impact of endometriosis on women’s lives: a qualitative study. BMC Womens Health 2014; 14 123
Impact of endometriosis on women’s lives: a qualitative study.Crossref | GoogleScholarGoogle Scholar |

[51]  National Health and Medical Research Council (NHMRC). NHMRC corporate plan 2016–2017. Canberra: NHMRC; 2016.