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Impact of Pelvic Pain and Endometriosis on Patient-Reported Outcomes and Experiences of Benign Hysterectomy: A Study from the Swedish National Register for Gynecological Surgery
Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Center of Paediatrics and Gynaecology and Obstetrics, Department of Gynaecology and Obstetrics in Norrköping.
Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.ORCID iD: 0000-0003-1588-135X
Linköping University, Department of Clinical and Experimental Medicine, Division of Children's and Women's health. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Center of Paediatrics and Gynaecology and Obstetrics, Department of Gynaecology and Obstetrics in Linköping.
2017 (English)In: Journal of Women's Health, ISSN 1540-9996, E-ISSN 1931-843XArticle in journal (Refereed) Epub ahead of print
Abstract [en]

Background: The study objective was to analyze and compare patient-reported experience measures (PREMs) and patient-reported outcome measures (PROMs) after hysterectomy in women with and without a preoperative complaint of pelvic pain associated with and without a confirmed diagnosis of endometriosis. Methods: Retrospective nationwide register study. Data on 28,776 hysterectomies performed on benign indication between 2004 and 2016 were retrieved from the Swedish National Register for Gynecological Surgery. Multivariable logistic regression models were used to compare the PREMs and PROMs items. The results are presented as adjusted odds ratios (aORs) and 95% confidence intervals (CI). Results: Regardless of the occurrence of pelvic pain preoperatively and a diagnosis of endometriosis, 1 year after surgery, the women were satisfied or very satisfied (amp;gt;90%) with the hysterectomy, and their medical condition was improved or much improved (amp;gt;95%). The women with a preoperative complaint of pelvic pain and endometriosis more often reported excessively short hospital stays (aOR 1.45, 95% CI 1.17-1.79), more severe complications after discharge (aOR 2.02, 95% CI 1.59-2.66) at the 8-week follow-up and at the 1-year follow-up (aOR 2.31, 95% CI 1.57-3.39), and more dissatisfaction with the operation (aOR 1.83, 95% CI 1.35-2.48) than preoperative pelvic pain-free women without endometriosis at the 1-year follow-up. Conclusions: The majority of the women were satisfied after their hysterectomy. The women with pelvic pain and endometriosis were at a higher risk of being dissatisfied. Pelvic pain per se seemed to be the main factor affecting the rating in the PREMs and PROMs, and the endometriosis was a significant contributing factor.

Place, publisher, year, edition, pages
MARY ANN LIEBERT, INC , 2017.
Keywords [en]
endometriosis; experience; hysterectomy; outcome; pelvic pain
National Category
Other Clinical Medicine
Identifiers
URN: urn:nbn:se:liu:diva-143941DOI: 10.1089/jwh.2017.6546ISI: 000417085200001PubMedID: 29148910OAI: oai:DiVA.org:liu-143941DiVA, id: diva2:1169734
Note

Funding Agencies|Swedish National Quality Registry of Gynecological Surgery; Swedish Government; Swedish Association of Local Authorities and Regions

Available from: 2017-12-29 Created: 2017-12-29 Last updated: 2018-09-10
In thesis
1. Disclosing the invisible: experiences, outcomes and quality of endometriosis healthcare
Open this publication in new window or tab >>Disclosing the invisible: experiences, outcomes and quality of endometriosis healthcare
2018 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Introduction: Many women with endometriosis report that their symptoms are normalized and trivialized when they seek medical care and they often experience diagnostic delays, ineffective treatments and physiological, psychological and social consequences. However, there is a knowledge gap when it comes to women’s experiences of different aspects of endometriosis healthcare, and the quality of that care.

Aim: The aim of this thesis was to identify, describe and analyse the experiences, encounters and outcomes of endometriosis healthcare from different perspectives.

Design and Method: This thesis is a summary of four studies with different methods and designs. Study I and II were qualitative interview studies in which nine women with a laparoscopy-verified endometriosis diagnosis (study I) and 25 healthcare professionals (HCPs) (study II) described their experiences of healthcare encounters related to endometriosis symptoms. The interviews were analysed using interpretive phenomenology (study I) and conventional content analysis (study II). Study III was a cross-sectional observational comparative study measuring pain thresholds, health-related quality of life (HRQoL) and symptoms of anxiety and depression using quantitative sensory testing (QST) and questionnaires in order to determine pain thresholds in healthy women (n=55) and women with persistent pelvic pain (PPP), with (n=14) and without (n=23) a confirmed diagnosis of endometriosis. The correlations between pain thresholds and duration of PPP, HRQoL and symptoms of anxiety and depression were also analysed. Study IV was a quantitative observational study using register data from the National Quality Register for Gynaecological Surgery. Patient-reported experience measures (PREM) and patient-reported outcome measures (PROM) after benign hysterectomy were analysed and compared in women with and without PPP and endometriosis (study IV).

Results: The results of the thesis are summarized in three themes: The struggle to visualize the pain, The endometriosis diagnosis as a key to understanding and enduring persistent pelvic pain and Healthcare encounters as potentially life changing.

In the first theme, women and HCPs described the healthcare encounters concerning endometriosis symptoms as troublesome (study I, II). The women struggled with disclosing, visualizing and communicating their hidden pain to the HCPs (study I), and HCPs expressed insecurity and limited knowledge when caring for these women (study II). Study III showed widespread reduced pain thresholds among women with PPP compared with healthy controls, and a significant positive correlation between duration of PPP and reduced pain thresholds . Study III also showed a reduced HRQoL and higher prevalence of anxiety and depressive symptoms among women with PPP, which were also described by the women (study I).

The importance of getting a diagnosis was described in the second theme by both women and HCPs (study I, II), but women with PPP with and without endometriosis diagnosis did not differ significantly in their pain thresholds or psychosocial outcomes in study III. Likewise, women with PPP with and without endometriosis gave more equal PREM and PROM answers than women in the pain-free comparison group. Overall, women undergoing hysterectomy on benign indications were satisfied with the experience and outcomes of the surgery (study IV).

As described in the last theme, healthcare encounters could be constructive or destructive. Positive experiences could make the symptoms easier to endure. The constructive encounters were often characterized by a holistic approach and a care structured in multidisciplinary teams.

Conclusion and clinical implications: The results suggest that PPP should be taken seriously and treated actively in order to minimize the risk of physiological and psychological consequences, such as reduced pain thresholds, lower HRQoL and symptoms of anxiety and depression. Unrelieved PPP could also be an explanatory factor for long-term physiological consequences, such as lower PREM and PROM after hysterectomy.

High-quality endometriosis healthcare should provide an interaction of physical, psychological and social factors. If women experience that HCPs acknowledge their pain and the effect of pain on HRQoL and mental health, and are offered proper pain-relieving treatment, healthcare encounters could change their lives.

Place, publisher, year, edition, pages
Linköping: Linköping University Electronic Press, 2018. p. 95
Series
Linköping University Medical Dissertations, ISSN 0345-0082 ; 1621
Keywords
endometriosis, persistent pelvic pain, healthcare professionals, healthcare encounters, health-related quality of life, pain thresholds, quantitative sensory testing, central sensitization, hysterectomy
National Category
Obstetrics, Gynecology and Reproductive Medicine
Identifiers
urn:nbn:se:liu:diva-151005 (URN)10.3384/diss.diva-151005 (DOI)9789176853153 (ISBN)
Public defence
2018-10-05, Fornborgen,, Vrinnevisjukhuset, Norrköping, 13:00 (Swedish)
Opponent
Supervisors
Available from: 2018-09-10 Created: 2018-09-10 Last updated: 2018-09-10Bibliographically approved

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The full text will be freely available from 2018-12-01 10:22
Available from 2018-12-01 10:22

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