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Disclosing the invisible: experiences, outcomes and quality of endometriosis healthcare
Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.ORCID iD: 0000-0002-4086-4634
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 [en]
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: urn:nbn:se:liu:diva-151005DOI: 10.3384/diss.diva-151005ISBN: 9789176853153 (print)OAI: oai:DiVA.org:liu-151005DiVA, id: diva2:1246959
Public defence
2018-10-05, Fornborgen,, Vrinnevisjukhuset, Norrköping, 13:00 (Swedish)
Opponent
Supervisors
Available from: 2018-09-10 Created: 2018-09-10 Last updated: 2019-09-30Bibliographically approved
List of papers
1. The double-edged experience of healthcare encounters among women with endometriosis: a qualitative study
Open this publication in new window or tab >>The double-edged experience of healthcare encounters among women with endometriosis: a qualitative study
2018 (English)In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 27, no 1-2, p. 205-211Article in journal (Refereed) Published
Abstract [en]

Aims and objectives

To identify and describe the experience of healthcare encounters among women with endometriosis.

Background

Endometriosis is a “hidden” chronic gynaecological disease appearing in every 10th woman of fertile age. Different manifestations of pain are the main symptoms, often leading to impaired physical and mental health, and lower quality of life. Previous research on healthcare experiences among women with endometriosis has focused on diagnostic delay and experiences of encountering general practitioners.

Design

A qualitative, interpretive, phenomenological approach was used.

Methods

We interviewed nine women aged 23–55, with a laparoscopy-confirmed diagnosis of endometriosis. The interviews were recorded and transcribed verbatim. The data were analysed following the steps of the interpretive phenomenological approach.

Results

Two themes were identified in the interview transcripts: being treated with ignorance and being acknowledged. The essence: “the double-edged experience of healthcare encounters” emerged from the themes. The women's experience was double-edged as it involved contradictory feelings: the encounters were experienced as both destructive or constructive. On the one hand, the destructive side was characterised by ignorance, exposure and disbelief. On the other hand, the constructive side made the women feel acknowledged and confirmed, boosting their self-esteem.

Conclusions

The new and important aspects of the findings are that the experience of healthcare encounters is for the first time expressed as double-edged: both destructive and constructive. The experience was of specific importance as it affected the women's perceptions of themselves and of their bodies.

Relevance to clinical practice

The information about the constructive side of the experience is of clinical valuable for all healthcare professionals (nurses, midwives and doctors) encountering these women, as it provides a new level of understanding of the experiences. The findings demonstrate both psychological and practical aspects that can help professionals to improve the encounters.

Place, publisher, year, edition, pages
Wiley-Blackwell Publishing Inc., 2018
Keywords
dysmenorrhoea, endometriosis, experience, healthcare encounter, healthcare professionals, phenomenology, qualitative study
National Category
Nursing
Identifiers
urn:nbn:se:liu:diva-141005 (URN)10.1111/jocn.13872 (DOI)000418871000042 ()28493635 (PubMedID)
Note

Funding agencies: County Council of Ostergotland; Linkoping University; Medical Research Council of Southeast Sweden

Available from: 2017-09-20 Created: 2017-09-20 Last updated: 2019-12-04Bibliographically approved
2. “A challenge” – healthcare professionals' experiences when meeting women with symptoms that might indicate endometriosis
Open this publication in new window or tab >>“A challenge” – healthcare professionals' experiences when meeting women with symptoms that might indicate endometriosis
2016 (English)In: Sexual & Reproductive HealthCare, ISSN 1877-5756, E-ISSN 1877-5764, Vol. 7, p. 65-69Article in journal (Refereed) Published
Abstract [en]

Objective

The aim of the study was to identify and describe the experiences of healthcare professionals when meeting women with symptoms that might indicate endometriosis.

Methods

Semi-structured interviews were conducted with 10 gynecologists, six general practitioners and nine midwives working at one university hospital, one central hospital, one private gynecology clinic and five healthcare centers in south-east Sweden. The interviews were recorded and transcribed verbatim and analyzed using qualitative conventional content analysis.

Results

Three clusters were identified: the corroborating encounter, the normal variation of menstruation cycles, and the suspicion of endometriosis. The healthcare professionals tried to make a corroborating encounter by acknowledging the woman, taking time to listen, and giving an explanation for the problems. Healthcare professionals had different ways to determine what was normal as regards menstrual pain, ovulation pain and dyspareunia. They also needed to have the competence to act and react when the symptoms indicated endometriosis.

Conclusions

Meeting women with symptoms that might indicate endometriosis is challenging and demands a certain level of competence from healthcare professionals. Sometimes the symptoms are camouflaged as “normal” menstruation pain, making it hard to satisfy the needs of this patient group.

Keywords
Chronic pelvic pain;Dysmenorrhea;Endometriosis;Healthcare professional;Qualitative study
National Category
Nursing
Identifiers
urn:nbn:se:liu:diva-124016 (URN)10.1016/j.srhc.2015.11.003 (DOI)000370089000012 ()
Available from: 2016-01-18 Created: 2016-01-18 Last updated: 2019-06-28
3. 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
Open this publication in new window or tab >>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
2018 (English)In: Journal of Women's Health, ISSN 1540-9996, E-ISSN 1931-843X, Vol. 27, no 5, p. 691-698Article in journal (Refereed) Published
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, 2018
Keywords
endometriosis; experience; hysterectomy; outcome; pelvic pain
National Category
Other Clinical Medicine
Identifiers
urn:nbn:se:liu:diva-143941 (URN)10.1089/jwh.2017.6546 (DOI)000417085200001 ()29148910 (PubMedID)
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: 2019-06-28

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