The Patient-Centeredness of Endometriosis Care and Targets for Improvement: A Systematic Review

118

Background/Aims: Endometriosis has a long diagnostic delay that is influenced by varying socio-economic and healthcare factors. In the Dutch situation, these factors are not yet identified. The aim of this study is to determine the length of the diagnostic delay of endometriosis in the Netherlands and to identify which variables affect this delay. Methods: A retrospective study among 139 patients diagnosed with endometriosis in a secondary care hospital with a specialized multidisciplinary endometriosis team. The diagnostic process was evaluated using a questionnaire-guided telephonic interview. Results: The median time interval from the onset of symptoms to diagnosis was 89 months or 7.4 years, divided in 7 months patient delay, 35 months general practitioner (GP) delay and 5 months gynecologist delay. Determinants for a longer diagnostic delay were young age at onset of symptoms, use of oral contraceptives or analgesics prescribed by GP, alternative diagnoses considered by the GP, and cyclic symptoms. Subfertility as presenting symptom resulted in faster diagnosis. Conclusion: This study shows that the time interval to the diagnosis of endometriosis is long and mainly consists of the period of time the woman consults her first line medical professional.

“…Diagnostic delay is unwanted, as in a part of the women with endometriosis, both symptoms and disease may progress without treatment, although evidence is contradictory [16,17,18]. …”

Section: Introductionmentioning

confidence: 99%

Diagnostic Delay of Endometriosis in the Netherlands

Staal

Zanden

Nap³

2016

118

“…Information, communication and education have recently been identified as primary improvement targets by endometriosis patients [19]. …”

Section: Resultsmentioning

confidence: 99%

Characteristics, Expectations and Needs of the Dutch Endometriosis Society Members

Roos-Eysbouts

Bie-Rocks²,

Dijk³

et al. 2015

Background/Aim Study Question: Endometriosis is associated with a significant reduction in the quality of life and higher depression and anxiety rates. The Dutch Endometriosis Society (ES) was founded to increase the recognition and knowledge in patients and health care professionals, stimulate research and improve care. This study was conducted to explore the characteristics of the members and evaluate their needs and expectations. Methods: A descriptive questionnaire-based survey was conducted among all members of the ES. The response rate was 51% (n = 571). Results: ES members appear to be highly educated women with a wide variety of endometriosis-related symptoms resulting in considerable restrictions in daily life. Information transmission was considered the main aim of ES (97%), whereas 56% expected social support, and 38% expected advocacy. The majority (71%) reported an improvement in their quality of life after contact with the ES. Conclusion: The results of this study underline patients' primary quest for information about endometriosis. Patient support groups such as ES can fulfil a useful role in disseminating knowledge from medical professionals to those suffering a chronic illness, resulting in a greater understanding and ultimately increasing their quality of life.

“…The ability to individualize the timing of endometriosis treatment, with an integration of medical and surgical strategies, facilitates correct management of the disease to improve the quality of life of the women affected [36]. Medical therapy has the aim of reducing pain by reducing the impact of the disease on quality of life [37,38,39].…”

Section: Discussionmentioning

confidence: 99%

Endometriosis and Perceived Stress: Impact of Surgical and Medical Treatment

Lazzeri¹,

Orlandini²,

Vannuccini³

et al. 2015

Background: The aim of the study was to investigate the levels of perceived stress in a group of women with a long-term history of endometriosis in conjunction with surgical and/or medical treatments. Methods: A clinical trial was conducted at the Department of Molecular and Developmental Medicine, University of Siena, in collaboration with a non-profit association of women with endometriosis, A.P.E. Onlus. Patients (n = 204) with a previous diagnosis of endometriosis (for at least 3 years) were included in this study. Each patient completed a semi-structured questionnaire and a validated scale to assess perceived stress, the Perceived Stress Scale (PSS) by e-mail. Results: The study showed that in women with a long-term history of endometriosis, the level of perceived stress was increased by repeated surgical treatments and reduced by some medical treatments.The median PSS value was 23 (range 9-36) and 30.6% of the study population were included in the highest stress category (>26). The highest levels were found in patients who had undergone the most surgery. The use of progestins was associated with a lower perceived stress (p = 0.004) than in the patients treated with gonadotropin-releasing hormones. Conclusions: Long-term endometriosis has a relevant impact on perceived stress, in particular in those undergoing repeated surgery.