Dataset Information

Cohort profile: The Endometriosis pain QUality aftEr Surgical Treatment (EndoQUEST) Study.

ABSTRACT: Endometriosis affects reproductive-aged females and varies considerably in terms of symptom presentation, morphologic features, and treatment response. Most studies investigating symptom recurrence after an endometriosis-related surgery have been conducted among adults. The Endometriosis pain QUality aftEr Surgical Treatment (EndoQUEST) Study was established to assess characteristics and biomarkers that are associated with pain remediation and improved quality of life after an endometriosis-related surgery among adolescents and young adults. This paper describes the EndoQUEST methodology, summarizes baseline descriptive factors, and compares characteristics by participant retention status. We enrolled 100 surgically-confirmed endometriosis participants aged 12-23 years who provided questionnaire data on reproductive and behavioral factors, pain characteristics and quality of life at three time points; before surgery, 6 weeks to 26 weeks after surgery, and 1 year after surgery. Among these 100 participants, 88 provided blood and/or saliva at all three time points, while 12 provided blood and/or saliva samples only before surgery and 6 to 26 weeks after surgery. There was little evidence of lost to follow-up at 1 year after surgery due to pain symptoms, as pain and quality of life characteristics were similar between participants who completed the questionnaire 1 year after surgery and those who did not. Analyses utilizing these longitudinal data will advance personalized treatment decision making for adolescents and young adults with endometriosis.

SUBMITTER: Shafrir AL

PROVIDER: S-EPMC9191708 | biostudies-literature | 2022

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Cohort profile: The Endometriosis pain QUality aftEr Surgical Treatment (EndoQUEST) Study.

Shafrir Amy L AL Vitonis Allison F AF Wallace Britani B DiVasta Amy D AD Sadler Gallagher Jenny J Sasamoto Naoko N Laufer Marc R MR Terry Kathryn L KL Missmer Stacey A SA

PloS one 20220613 6

Endometriosis affects reproductive-aged females and varies considerably in terms of symptom presentation, morphologic features, and treatment response. Most studies investigating symptom recurrence after an endometriosis-related surgery have been conducted among adults. The Endometriosis pain QUality aftEr Surgical Treatment (EndoQUEST) Study was established to assess characteristics and biomarkers that are associated with pain remediation and improved quality of life after an endometriosis-rela ...[more]

PMID: 35696391

Similar Datasets

Project description:Study questionHow should surgery for endometriosis be performed?Summary answerThis document provides recommendations covering technical aspects of different methods of surgery for deep endometriosis in women of reproductive age.What is known alreadyEndometriosis is highly prevalent and often associated with severe symptoms. Yet compared to equally prevalent conditions, it is poorly understood and a challenge to manage. Previously published guidelines have provided recommendations for (surgical) treatment of deep endometriosis, based on the best available evidence, but without technical information and details on how to best perform such treatment in order to be effective and safe.Study design size durationA working group of the European Society for Gynaecological Endoscopy (ESGE), ESHRE and the World Endometriosis Society (WES) collaborated on writing recommendations on the practical aspects of surgery for treatment of deep endometriosis.Participants/materials setting methodsThis document focused on surgery for deep endometriosis and is complementary to a previous document in this series focusing on endometrioma surgery.Main results and the role of chanceThe document presents general recommendations for surgery for deep endometriosis, starting from preoperative assessments and first steps of surgery. Different approaches for surgical treatment are discussed and are respective of location and extent of disease; uterosacral ligaments and rectovaginal septum with or without involvement of the rectum, urinary tract or extrapelvic endometriosis. In addition, recommendations are provided on the treatment of frozen pelvis and on hysterectomy as a treatment for deep endometriosis.Limitations reasons for cautionOwing to the limited evidence available, recommendations are mostly based on clinical expertise. Where available, references of relevant studies were added.Wider implications of the findingsThese recommendations complement previous guidelines on management of endometriosis and the recommendations for surgical treatment of ovarian endometrioma.Study funding/competing interestsThe meetings of the working group were funded by ESGE, ESHRE and WES. Dr Roman reports personal fees from ETHICON, PLASMASURGICAL, OLYMPUS and NORDIC PHARMA, outside the submitted work; Dr Becker reports grants from Bayer AG, Volition Rx, MDNA Life Sciences and Roche Diagnostics Inc. and other relationships or activities from AbbVie Inc., and Myriad Inc, during the conduct of the study; Dr Tomassetti reports non-financial support from ESHRE, during the conduct of the study; and non-financial support and other were from Lumenis, Gedeon-Richter, Ferring Pharmaceuticals and Merck SA, outside the submitted work. The other authors had nothing to disclose.Trial registration numberna.

Project description:PurposeNeuropathic pain is a common disorder of the somatosensory system that affects 7%-10% of the general population. The disorder places a large social and economic burden on patients as well as healthcare services. However, not everyone with a relevant underlying aetiology develops corresponding pain. DOLORisk Dundee, a European Union-funded cohort, part of the multicentre DOLORisk consortium, was set up to increase current understanding of this variation in onset. In particular, the cohort will allow exploration of psychosocial, clinical and genetic predictors of neuropathic pain onset.ParticipantsDOLORisk Dundee has been constructed by rephenotyping two pre-existing Scottish population cohorts for neuropathic pain using a standardised 'core' study protocol: Genetics of Diabetes Audit and Research in Tayside Scotland (GoDARTS) (n=5236) consisting of predominantly type 2 diabetics from the Tayside region, and Generation Scotland: Scottish Family Health Study (GS:SFHS; n=20 221). Rephenotyping was conducted in two phases: a baseline postal survey and a combined postal and online follow-up survey. DOLORisk Dundee consists of 9155 participants (GoDARTS=1915; GS:SFHS=7240) who responded to the baseline survey, of which 6338 (69.2%; GoDARTS=1046; GS:SFHS=5292) also responded to the follow-up survey (18 months later).Findings to dateAt baseline, the proportion of those with chronic neuropathic pain (Douleur Neuropathique en 4 Questions questionnaire score ≥3, duration ≥3 months) was 30.5% in GoDARTS and 14.2% in Generation Scotland. Electronic record linkage enables large scale genetic association studies to be conducted and risk models have been constructed for neuropathic pain.Future plansThe cohort is being maintained by an access committee, through which collaborations are encouraged. Details of how to do this will be available on the study website (http://dolorisk.eu/). Further follow-up surveys of the cohort are planned and funding applications are being prepared to this effect. This will be conducted in harmony with similar pain rephenotyping of UK Biobank.

Project description:PurposeDespite the growing evidence that physical activity and familial factors play a role in low back pain (LBP), there is a lack of robust longitudinal studies that (1) investigate the types and dosages of physical activity that are protective or harmful for LBP, (2) employ objective measures of physical activity and (3) conduct appropriate adjustment for confounders. The AUstralian Twin BACK (AUTBACK) study was established to elucidate the longitudinal LBP-physical activity relationship with the benefits of controlling for familial (both genetic/nongenetic) factors that may influence physical activity engagement and LBP.ParticipantsParticipants are twins registered at Twins Research Australia (TRA), older than 18 years, with access to internet. We collected data on LBP status (weekly) and physical activity levels (monthly) for 12 months as well as a wide range of health, lifestyle and physical activity (objective, self-reported, including different types and dosages) data.Findings to dateWe included 401 twins, 157 being complete twin pairs (n=314). Lifetime prevalence of LBP was 85%. Participants spent 61% of their week in sedentary time and only 4% in moderate/vigorous intensity physical activity (accelerometer). So far, 168 participants (40% of the sample) have completed the 12-month follow-up. A total of 7150 weekly (LBP status) and 1763 monthly questionnaires (physical activity status) have been answered (92% response rate).Future plansThe 12-month follow-up will be completed by June 2020. This cohort represents a novel and comprehensive resource for researchers in the field, and includes high-quality, and frequent data on LBP and physical activity. It allows the investigation of genetic and shared environmental factors on the LBP-physical activity relationship. The AUTBACK group has planned a number of projects, with the main one being the investigation of the influence of physical activity on recurrence of LBP. Data linkage opportunities are available, including with other studies conducted by TRA.

Dataset Information

Cohort profile: The Endometriosis pain QUality aftEr Surgical Treatment (EndoQUEST) Study.

Publications

Cohort profile: The Endometriosis pain QUality aftEr Surgical Treatment (EndoQUEST) Study.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets