Satisfaction with medical support in women with endometriosis

Lukas, Ilona; Schwartz, A Kohl; Geraedts, Kirsten; Rauchfuß, Martina; Wölfler, M; Häberlin, Felix; Orelli, Stephanie von; Eberhard, Markus; Imthurn, Bruno; Imesch, Patrick; Leeners, Brigitte

doi:10.1371/journal.pone.0208023

Cited by 38 publications

(37 citation statements)

References 39 publications

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“…Rowe et al found three domains of endometriosis care that could influence patient satisfaction with endometriosis care: (i) information that meets patients’ needs; (ii) being heard with empathy and respect; and (iii) technical competence. Similar domains were also found by two previous questionnaire studies investigating patient satisfaction ( Lukas et al , 2018 ; Wygant et al , 2019 ).…”

Section: Introductionsupporting

confidence: 87%

Towards more patient-centred endometriosis care: a cross-sectional survey using the ENDOCARE questionnaire

Schreurs

Wijsard

Dancet

et al. 2020

Human Reproduction Open

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STUDY QUESTION What is the performance of the patient-centredness of endometriosis care in a secondary and a tertiary care setting and how can it be improved? SUMMARY ANSWER Overall, patient-centredness was comparable in the two endometriosis care centres, but differed regarding ‘physical comfort’ and ‘continuity and transition’; both centres can learn how to improve several of their targets from the other’s strengths. WHAT IS KNOWN ALREADY The ENDOCARE questionnaire (ECQ) is a validated questionnaire for assessing the important quality dimension ‘patient-centredness’. Patient-centredness is associated with quality of life, although this should be explored further by larger-scale studies. STUDY DESIGN, SIZE, DURATION A cross-sectional survey, relying on the ECQ, was performed (during 2015 and 2016) among 407 women with surgically diagnosed endometriosis. PARTICIPANTS/MATERIALS, SETTING, METHODS This study was conducted in a secondary and a tertiary care centre in the Netherlands. A total of 209 Dutch-speaking women who had endometriosis surgery (2013–2014), completed the ECQ after a postal invitation and, if needed, postal reminders. The assessed outcomes were: overall patient-centredness, the patient-centredness for each of its 10 dimensions, and the patient-centred strengths and targets for improvement. Case-mix adjusted patient-centredness scores (PCS) were compared and strengths and targets for improvement were identified with a matrix modelling importance against experience. The need to improve the targets was quantified with quality impact indices. MAIN RESULTS AND THE ROLE OF CHANCE No difference was demonstrated between the overall PCS of the secondary and tertiary centres (respectively: 4.8 and 4.5; P = 0.15). No difference was found in PCS per dimension between the two clinics except for the secondary care centre performing better regarding ‘physical comfort’ (respectively: 4.5 and 3.0; P = 0.01) and ‘continuity and transition’ (respectively: 6.0 and 4.2; P = 0.01). The two centres had nine targets for improvement in common. The secondary and tertiary centres, respectively, had five and seven additional centre-specific targets for improvement. Cross-centre learning is encouraged as 9 out the 12 additional centre-specific targets were strengths in the other centre. The main improvement targets were being able to contact the centre in case of emergency (both centres), the involvement of a significant other (secondary centre), diagnostic delay (secondary centre), personal follow-up (tertiary centre) and disclosing the level of competence of healthcare providers (tertiary centre). LIMITATIONS, REASON FOR CAUTION Responders did not differ from non-responders in their stage of endometriosis, educational level, rating of endometriosis care and degree to which their complaints are suppressed. Endometriosis is a chronic condition and patient-centredness might be experienced differently at other points of the endometriosis care trajectory. WIDER IMPLICATION OF THE FINDINGS The ECQ is a useful tool to assess patient-centredness in both secondary and tertiary care centres. Further research should focus on how to improve endometriosis care. STUDY FUNDING/COMPETING INTEREST(S) No external funding was used. V.M. and C.B.L. report grants from Guerbet, grants from Merck and grants from Ferring outside the submitted work. All authors declare that they have no competing interests concerning this publication.

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Section: Introductionsupporting

confidence: 87%

Towards more patient-centred endometriosis care: a cross-sectional survey using the ENDOCARE questionnaire

Schreurs

Wijsard

Dancet

et al. 2020

Human Reproduction Open

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“…Treatment is based on surgical procedures and/or hormone therapy. It aims to control the symptoms, and unfortunately, it does not always bring the expected long-term result [ 1 , 2 , 3 , 4 , 5 , 31 , 32 , 33 ]. Interesting in this context are the self-care measures for chronic diseases, which are an essential aspect in strengthening health, alleviating symptoms, and preventing the consequences of diseases, which can also apply to women with endometriosis [ 34 , 35 ].…”

Section: Discussionmentioning

confidence: 99%

Polycystic Ovary Syndrome and Endometriosis as Reasons for Women’s Admission to Outpatient Specialist Care in Poland—A Retrospective Analysis

Rzońca

Kosowski²,

Bień

et al. 2021

IJERPH

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This study aimed at presenting selected aspects of outpatient specialist care for women diagnosed with polycystic ovary syndrome (PCOS) or endometriosis. The study was carried out using a retrospective analysis of the services provided under Outpatient Specialist Care (AOS) for women, based on data from the National Health Fund (NFZ). The study included data on women with PCOS or endometriosis based on the International Statistical Classification of Diseases and Related Health Problems (ICD-10) in Poland from 2016 to 2018. The average age of women in the study group with PCOS was 25.31 (±7.02) years and, for those with endometriosis, 38.21 (±10.79). AOS patients with diagnosed PCOS most often made 2–3 visits (34.60%) to a specialist doctor, and those with diagnosed endometriosis most often made one visit (39.95%). Significant differences between patients with PCOS and endometriosis using AOS were found concerning the women’s age, the year, season, place of treatment, type of clinic, mode of admission, number of visits, and their place of residence or macroregion. With increasing age, women with PCOS made more visits to AOS, and women with endometriosis made fewer visits to the AOS specialist.

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“…27 Giving women sufficient knowledge and encouraging them to participate in care can be effective ways to increase satisfaction with care. 28 However, this presumes that women and physicians are in cooperation, sharing knowledge and experiences. It is a balancing act, protecting women from worries or involving them in caring actions.…”

Section: Discussionmentioning

confidence: 99%

Striving for a biopsychosocial approach: A secondary analysis of mutual components during healthcare encounters between women with endometriosis and physicians

Berterö

Alehagen

Grundström

2019

Journal of Endometriosis and Pelvic Pain Disorders

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Objective: The objective of this study was to identify and describe mutual components during healthcare encounters between women with endometriosis and physicians. Methods: Secondary analysis of data was obtained from two original face-to-face interview studies, one with nine women with endometriosis and one including 16 physicians. Data in this secondary analysis were analysed using thematic analysis. Results: Three themes were identified. (1) Continuity as a foundation for a biopsychosocial approach. The women and the physicians described the importance of continuity and both parties strived for a biopsychosocial approach whereby the female body was not treated as biomedical defect object, but as a part of the unity that constitutes a human being. (2) Listening sensitively. Women and physicians believed that listening sensitively involved more than just hearing the actual words – it required thoughtfulness, reflection and responsiveness. (3) Timing of diagnosis. The physicians tried to protect the women from worrying by treating the painful menstruations without mentioning endometriosis. However, the women regarded not mentioning endometriosis as a lack of competence on the part of the physicians. Conclusion: This study provides new insights into the need for further support in the provision of psychosocial care for women with endometriosis, in the striving towards a biopsychosocial approach.

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Satisfaction with medical support in women with endometriosis

Cited by 38 publications

References 39 publications

Towards more patient-centred endometriosis care: a cross-sectional survey using the ENDOCARE questionnaire

Towards more patient-centred endometriosis care: a cross-sectional survey using the ENDOCARE questionnaire

Polycystic Ovary Syndrome and Endometriosis as Reasons for Women’s Admission to Outpatient Specialist Care in Poland—A Retrospective Analysis

Striving for a biopsychosocial approach: A secondary analysis of mutual components during healthcare encounters between women with endometriosis and physicians

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