Translation, Cross-Cultural Adaptation, and Psychometric Evaluation of the Swedish Version of ENDOCARE: An Instrument to Measure Patient Centeredness of Endometriosis Care

Grundström, Hanna; Wikman, Per; Olovsson, Matts

doi:10.1159/000515659

Cited by 8 publications

(5 citation statements)

References 29 publications

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“…This number is higher than the original research conducted by the creators of the ENDOCARE questionnaire, 9 namely 34 ± 7 years and other studies conducted using a similar questionnaire in Amsterdam 10 as well as research in Sweden. 11 The age of the respondents in this study was also higher than the previous study in Palembang, Indonesia which showed that the majority of endometriosis patients seeking medical assistance had a mean age of 33.52 + 7.12 years. 12 These results showed that endometriosis patients in Indonesia seek help and get diagnosed much later than women in other countries.…”

Section: Discussioncontrasting

confidence: 52%

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Validity and reliability test of ENDOCARE questionnaire adoption on endometriosis patients in Indonesia

Harzif

Pradana

Natadisastra

et al. 2022

Journal of Endometriosis and Pelvic Pain Disorders

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Background: Endometriosis is a health problem that causes various biological, psychological, and social problems. Patient-centered care is the best standard of care in endometriosis cases. ENDOCARE is an questionnaire assessing all dimensions of patient-centered endometriosis care. However, there has been no adoption of this questionnaire in Indonesia. Aim: To determine the validity and reliability of the Indonesian version of the ENDOCARE questionnaire. Method: This study is a cross-sectional study conducted on patients with endometriosis on Dr. Cipto Mangunkusumo, Jakarta, Indonesia from July 2020 to December 2020. Patients with communication problems were excluded from the study. The English version of the ENDOCARE questionnaire was translated into Indonesian and back into English by sworn translators and specialists in obstetrics and gynecology. Analysis of the validity and reliability of ENDOCARE was carried out. Result: There were 108 respondents who were included in the study. Percentage of negative experience (PNP), mean important score (MIS), and patient-centered care (PCS) score were analyzed. Validity and reliability tests were performed. There were 38 questions covering 10 dimensions in the Indonesian version of the ENDOCARE questionnaire Conclusion: The Indonesian version of the ENDOCARE questionnaire is a valid and reliable questionnaire in assessing patient-centered care of endometriosis.

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Section: Discussioncontrasting

confidence: 52%

“…Similar results were obtained in a study in Sweden, especially on the physical comfort dimension. 11 This result showed that patients in both countries where the questionnaire was adapted had a perception that the infrastructure and waiting time contributed to the worst experience in the treatment of endometriosis.…”

Section: Discussionmentioning

confidence: 94%

Validity and reliability test of ENDOCARE questionnaire adoption on endometriosis patients in Indonesia

Harzif

Pradana

Natadisastra

et al. 2022

Journal of Endometriosis and Pelvic Pain Disorders

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“…The ECQ has been validated to investigate the patient-centeredness of endometriosis care across Belgium, Sweden, and the Netherlands [18, 19, 21]. The ECQ includes 38 care aspects, grouped into ten dimensions of patient-centered care, to be rated on two 4-point Likert scales: one for importance and one for experienced performance [18, 19].…”

Section: Methodsmentioning

confidence: 99%

The Relation between Patient-Centered Care and Quality of Life in Women with Endometriosis

Schreurs¹,

Dancet²,

Apers³

et al. 2023

Gynecol Obstet Invest

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Objective: The objective of this study was to examine the hypothesis that experiences with patient-centered endometriosis care are related to the endometriosis-specific quality of life dimensions “emotional well-being” and “social support.” Design: A secondary regression analysis of two cross-sectional studies was conducted. Participants/Materials: In total, data from 300 women were eligible for analysis. The participating women all had surgically proven endometriosis. Setting: The study was conducted in one secondary and two tertiary endometriosis clinics in the Netherlands. Questionnaires were disseminated between 2011 and 2016. Methods: Both included studies investigated patient-centeredness of endometriosis care and endometriosis-specific quality of life using, respectively, the ENDOCARE questionnaire (ECQ) and the Endometriosis Health Profile 30 (EHP-30). To increase power, the regression analysis focused on the previously found relation between the ten dimensions of the ECQ and the EHP-30 domains “emotional well-being” and “social support” rather than all five EHP-30 domains. After the Bonferroni correction to limit type 1 errors, the adjusted p value was 0.003 (0.05/20). Results: The participating women had a mean age of 35.7 years and had predominantly been diagnosed with moderate to severe endometriosis. None of the relations between patient-centered endometriosis care and the EHP-30 domain “emotional well-being” were significant. Three dimensions of patient-centered endometriosis care proved to be significantly related to the EHP-30 domain “social support”: “information, communication, and education” (p < 0.001, beta = 0.436), “coordination and integration of care” (p = 0.001, beta = 0.307), and “emotional support and alleviation of fear and anxiety” (p = 0.002, beta = 0.259). Limitations: This cross-sectional study identified relations rather than proving causality between experiencing less patient-centeredness of care and having lower quality of life. Nevertheless, it is very tangible that some causality exists, either directly or indirectly (e.g., through empowerment) and that by improving patient-centeredness, quality of life might be improved as well. Conclusion: “Information, communication, and education”; “coordination and integration of care”; and “emotional support and alleviation of fear and anxiety” as dimensions of patient-centered endometriosis care are related to the quality of life domain “social support” of women with endometriosis. Improving the patient-centeredness of endometriosis care was already considered an important goal, but even more so given its relation with women’s quality of life, which is increasingly considered the ultimate measure of health care quality. Quality improvement projects focusing on “information, communication, and education” are expected to impact women’s quality of life the most.

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“…It can be used to compare patient-centeredness between different clinics and to identify targets for improvement [ 18 ]. ECQ is a valid, reliable, and disease-specific instrument that has been translated, cross-culturally adapted, and psychometrically evaluated in a Swedish context with good results [ 19 ].…”

Section: Methodsmentioning

confidence: 99%

Clinical factors associated with quality of life among women with endometriosis: a cross-sectional study

Pontoppidan,

Olovsson,

Grundström

2023

BMC Women's Health

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Background Endometriosis often leads to a decrease in Quality of Life (QoL), due to its impact on various aspects of women’s lives, such as social life, mental health, sex life, and working capacity. Although previous studies have assessed QoL in women with endometriosis, few studies have explored the impact of different clinical variables on QoL. The aim of this study was to investigate how women with endometriosis perceive their QoL, and to analyze which clinical factors are associated with QoL. Methods The Endometriosis Health Profile-30 and the ENDOCARE Questionnaire were distributed to 1000 women diagnosed with endometriosis from 10 different clinics across Sweden. The responses from 476 women were included in univariate and multivariable regression analyses, where the clinical factors were correlated with overall QoL and QoL dimensions. Results The women participating in this study reported a low QoL. The clinical factors that showed a significant correlation with overall QoL were age at first onset of endometriosis symptoms (β= -0.64, p < 0.001), having more than 10 visits to general practitioners before referral to a gynecologist (β = 5.58, p = 0.036), current or previous mental health issues (β = 7.98, p < 0.001) patient-centeredness (β= -2.59, p < 0.001) and use of opioids (β = 7.14, p = 0.002). Conclusions This study shows that opioid use and mental health issues were associated with a worse QoL, whereas a higher degree of patient-centeredness was associated with a better QoL. The association between opioid use and a worse QoL might not entirely be caused by the opioid use itself but also by symptom severity and mental health issues. An improved patient-centeredness and more focus on taking care of mental health issues would reasonably result in a better QoL for women with endometriosis.

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Translation, Cross-Cultural Adaptation, and Psychometric Evaluation of the Swedish Version of ENDOCARE: An Instrument to Measure Patient Centeredness of Endometriosis Care

Cited by 8 publications

References 29 publications

Validity and reliability test of ENDOCARE questionnaire adoption on endometriosis patients in Indonesia

Validity and reliability test of ENDOCARE questionnaire adoption on endometriosis patients in Indonesia

The Relation between Patient-Centered Care and Quality of Life in Women with Endometriosis

Clinical factors associated with quality of life among women with endometriosis: a cross-sectional study

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