{"paper_id":"1a75bb66-14e7-4ea9-b841-a51ae5e35555","body_text":"Over recent decades, increasing evidence suggests that patient expectations substantially determine treatment outcomes across various medical conditions [ 1 ]. As a result, expectations have been addressed in treatment processes, leading to optimized treatment outcomes, i.e. in heart surgery or breast cancer patients [ 2 ,  3 ].\nEndometriosis is a common and debilitating gynaecological disease that affects 4.4% of the female population [ 4 ]. It is defined as inflammatory lesions of endometrial-like tissue outside the uterine cavity [ 5 ]. The most frequently reported symptoms of endometriosis include dysmenorrhoea, pelvic pain, dyschezia, dysuria, dyspareunia, and infertility [ 6 ]. Symptoms’ clinical presentation, frequency, and intensity vary, resulting in delayed diagnosis [ 7 ]. Endometriosis has a significant negative impact on patients, affecting their social and professional lives, overall quality of life, and relationships [ 8 – 10 ]. Beyond that, people diagnosed with endometriosis demonstrate higher rates of anxiety, depression, and general emotional distress compared to the female general population [ 11 ,  12 ], underscoring the substantial psychological burden imposed by the disease.\nIf conservative hormonal treatments did not yield sufficient symptom relief, international treatment guidelines recommend laparoscopic surgery for endometriosis-related chronic pain and infertility [ 13 ,  14 ]. Nevertheless, 20 to 30% of treated patients experience significant post-operative symptom persistence and disability [ 15 – 17 ]. Deep infiltrating endometriosis [ 18 ] and concomitant adenomyosis [ 19 ,  20 ] are considered medical risk factors for ongoing post-operative complaints. Additionally, biopsychological factors, such as depression, anxiety, pain catastrophizing, and younger age, have previously been identified as significant predictors of persistent symptoms in patients with endometriosis [ 17 ,  21 ,  22 ]. However, these factors do not explain symptom persistence entirely, suggesting that additional factors may be crucial for treatment outcomes in women with endometriosis.\nAs expectations are relevant for treatment outcomes in several medical conditions, they may also serve as influencing factors in people with endometriosis. Initial evidence suggests that expectations may be relevant for this patient group: Placebo-response rates of up to 32% have been documented in patients with endometriosis following sham laparoscopy [ 23 ], indicating that their perception of receiving treatment may have contributed to the outcome. Furthermore, patients who had just undergone laparoscopy for biopsy extraction showed pain improvement comparable to patients who received both biopsy and endometriosis extraction in a single procedure [ 16 ,  24 ]. It is thus important to explore and understand the expectations of patients with endometriosis more precisely. Unsatisfactory treatment outcomes after laparoscopy may be affected by nocebo effects resulting from negative expectations [ 25 ,  26 ].\nQualitative research has identified factors such as social support and pain management as facilitators for positive treatment outcomes after surgery. Mental health issues and lack of social and professional support have been identified as barriers to positive outcomes following surgery [ 27 ]. However, there is a lack of research that specifically examines the facilitators of and barriers to post-operative quality of life in patients with endometriosis. To the best of our knowledge, this study is the first to investigate expectations, facilitators, and barriers to quality of life in women with endometriosis following laparoscopy. Semi-structured interviews were conducted with patients with endometriosis to address the following research questions:\nWhich endometriosis-related complaints and disabilities do patients name? Which positive and negative expectations do patients name regarding laparoscopy and post-operative quality of life? Which facilitators and barriers do patients perceive regarding post-operative quality of life?\nWhich endometriosis-related complaints and disabilities do patients name?\nWhich positive and negative expectations do patients name regarding laparoscopy and post-operative quality of life?\nWhich facilitators and barriers do patients perceive regarding post-operative quality of life?\n\nThis interview study was conducted within a mixed-method longitudinal clinical cohort study with one pre- and eight post-operative assessments and an ambulatory assessment. (ClinicalTrials.gov identifier:  NCT05019612 , study protocol: 10.1136/bmjopen-2022-067497). Study’s conception, conduct, and reporting followed consolidated criteria for qualitative research (COREQ, [ 28 ]). Interviews were taken pre- and post-operatively. This study refers to the pre-operative interviews only.\nWe conducted semi-structured interviews with 35 patients with a clinical indication for laparoscopy because of suspected endometriosis. Patients scheduled for laparoscopy at a specialist centre for surgical endoscopy and endometriosis in Germany (Frauenklinik an der Elbe) were informed about the clinical cohort study by telephone. Interview recruitment was included at the end of the clinical cohort study’s baseline assessment between 21 August 2021 and 31 May 2022. Interested patients provided their mobile phone numbers to be contacted by the study team for detailed study information and informed consent.\nPatients had to fulfil the following criteria to be included in the interview study: (1) aged 18 years or older, (2) endometriosis-related complaints with or without an unmet wish to have children, (3) proficiency in written and spoken German, (4) female sex, (5) informed consent for study participation, (6) indication for laparoscopy, (7) endometriosis visually diagnosed by clinicians, two further criteria confirmed post-operatively: (8) complete excision of endometrial tissue, and (9) benign biopsy result of endometrial tissue.\nInterviews were conducted via telephone, using a semi-structured interview guide with 14 open-ended questions (see supplementary Material 2, Document  2 ). Interviews were devised by NH (M.Sc. psychologist, PhD student in Clinical Psychology), AKM (PhD, M.Sc. psychologist), and YN (Professor of Clinical Psychology and Psychotherapy, licensed psychotherapist). Interviews were conducted at the authors’ workplace by NH, AKM or trained psychology students one week before the laparoscopy. All Interviews were audio recorded. Informed consent was obtained verbally and in writing. The mean interview time was 16:33 min, ranging from 7:02 to 37:29 min. At the end of the interviews, sociodemographic and prior treatment experiences were explored using a ten-item questionnaire lasting approximately 5 min. Inclusion criteria seven to nine were checked after laparoscopy, leading to some patients and their interviews being excluded from the analysis subsequently.\nWe conducted a structural content analysis using the qualitative research software MaxQDA 2023. NH and AKM independently coded the transcripts using the following six concept-driven top-level thematic codes:  complaints and disability (1 & 2) ,  positive and negative expectations (3 & 4) , as well as  facilitators and barriers (5 & 6).  These codes were directly related to the research questions and assigned in multiple iterations. Subsequently, data-driven sub-level thematic codes were developed in accordance with the principle of data saturation and assigned through multiple cycles. Any divergent code was discussed among NH, AKM and other colleagues, and a complete consensus was reached.\nCode definitions and preliminary findings were refined during multiple peer debriefing sessions with colleagues and psychology students to enhance the study’s validity. NH, AKM, and a dedicated minute taker conducted a participant checking session. This took place as a recorded online group discussion where the research findings were presented to five study participants, who were given the opportunity to discuss our findings from their point of view, improve clarity, and suggest missing aspects. Final findings and quotations were translated into English with the aid of a colleague who is a native speaker of English as well as a professional translation service (see supplementary Material 1, Table  1 ).\n\nA total of  N  = 35 patients with suspected endometriosis participated in the qualitative study. Two participants were excluded post-operatively because their endometriosis diagnosis was not confirmed (see supplementary Material 3, Fig.  3 ). Ultimately,  N  = 33 participants were included for content analysis (Table  1 ). Among them, 33 (97.0%) identified as female and one as non-binary (3.0%). Age ranged from 21 to 43 years ( M  = 30.48,  SD  = 5.81). Most participants had a university degree (42.4%) or a general qualification for university entrance, i.e., a German Abitur (27.3%). The majority of participants were diagnosed with minimal (43.3%) or mild (26.7%) endometriosis in accordance with the rASRM score criteria (revised American Society of Reproductive Medicine score [ 29 ]), while the remaining participants were diagnosed with moderate (16.7%) or severe (3.3%) endometriosis. Duration of symptoms ranged from 1.5 to 30 years ( M  = 9.78,  SD  = 8.35). Of the 33 participants, seven (27.3%) reported having previous treatment experiences with laparoscopy within the last 12 months, and 17 participants (51.5%) reported previous experience with other endometriosis-related treatments (e.g., hormone therapy).\nTable 1 Sociodemographic and clinical characteristics of  N  = 33 participants with endometriosis n (%) M SD Range \n Gender \n  Female 32 (97.0)  Non-binary 1 (3.0) Age  in years 30.48 5.81 21–43 \n Nationality \n  German 33 (100.0) \n Immigrant background* \n 6/24 (18.2) \n Level of education \n  Lower secondary school 1 (3.0)  Secondary school 8 (24.2)  Qualification for higher education 9 (27.3)  University degree 14 (42.4)  Not specified 1 (3) \n Reason for laparoscopy \n  Endometriosis-related complaints 30 (90.9)  Endometriosis-related complaints with an unmet wish to have children/Infertility 3 (9.1) \n Treatment experiences with laparoscopy within the last 12 months (yes) \n 7 (27.3) \n Other endometriosis-related treatment experiences (yes) \n 17 (51.5) \n Stage of endometriosis (rASRM) \n  Minimal 16 (47.1)  Mild 9 (26.5)  Moderate 5 (14.7)  Severe 1 (3.3)  Not specified 2 (5,9) \n Duration of symptoms (months) \n 29 (89.9) 9.78 8.35 1.5–30 Note.  M  = mean;  SD  = standard deviation; rASRM = revised American Society for Reproductive Medicine Score; immigrant background, i.e., participants or one or both parents were not born in Germany, * n  = 24, item was not included until some interviews had already been conducted\nSociodemographic and clinical characteristics of  N  = 33 participants with endometriosis\nNote.  M  = mean;  SD  = standard deviation; rASRM = revised American Society for Reproductive Medicine Score; immigrant background, i.e., participants or one or both parents were not born in Germany, * n  = 24, item was not included until some interviews had already been conducted\nPatients reported a wide range of endometriosis-related complaints and disability, summarized in Table  2 . Cardinal complaints are highlighted in bold font.\nTable 2 Reported endometriosis-related complaints and disability Complaint Areas affected by disability Cyclic vaginal thrush Ability to work Dizziness Feeling of agency over one’s body and body image \n Dysmenorrhea \n Mental health \n Dysuria & Dyschezia \n Mobility \n Dyspareunia \n Nutrition Gastrointestinal symptoms Physical fitness Headache Reliance on the sympathy and understanding of one’s social environment \n Unmet wish to have children/Infertility \n One’s social environment Metrorrhagia Romantic relationships Nausea and vomiting Self-esteem Ovulation pain Sexual intimacy \n Pelvic pain \n Sleep Raised temperature/fever Social, family, and leisure activities Shoulder, leg, and back pain Nutrition Sweating Vertigo Water retention Note. Sorted alphabetically. Cardinal complaints are highlighted in bold font\nReported endometriosis-related complaints and disability\nNote. Sorted alphabetically. Cardinal complaints are highlighted in bold font\nQualitative findings are sorted thematically and documented with sub-level codes in bold font. Quotations are shown in italics. Figure  1  presents a schematic overview of our findings.\n\nPositive and negative expectations are sorted thematically by the categories of  complaints and disability , and  treatment .\nMost participants expected  complaints improvement  following laparoscopy, but some expected an absolute  absence of complaints . ‘But I just hope that I will be in less pain’ (P28; f, 27y). ‘I really have very high expectations that I will not be in pain anymore’ (P2, f, 33y).\n‘But I just hope that I will be in less pain’ (P28; f, 27y).\n‘I really have very high expectations that I will not be in pain anymore’ (P2, f, 33y).\nAnother positive expectation was  to get pregnant  and experience motherhood. ‘Maybe finally getting pregnant […] and finally being able to be a mother’ (P27, f, 26y).\n‘Maybe finally getting pregnant […] and finally being able to be a mother’ (P27, f, 26y).\nWhile some participants expected  general improvements in disability , others cited specific improvements in areas such as  mental health ,  physical disability ,  ability to work , and  sexual intimacy . Additionally, participants expected  reduced strain on their romantic relationships . ‘So, yes, a positive outcome would be that I would no longer suffer from depression or that my depression would improve’ (P27, f, 26y). ‘Being able to do normal things, like going to work, for example. That would be really useful’ (P13, f, 29y).\n‘So, yes, a positive outcome would be that I would no longer suffer from depression or that my depression would improve’ (P27, f, 26y).\n‘Being able to do normal things, like going to work, for example. That would be really useful’ (P13, f, 29y).\nParticipants expected improvements as a result of laparoscopy, such as  a feeling of agency over one’s body ,  increased quality of life , and  courage to face life . ‘Well, I really hope […], it sounds stupid like that, to feel more free in my own body’ (P09, f, 28y). ‘I really hope that my quality of life will be much, much, much better’ (P06, f, 25y) ‘Wanting to live again and to keep on living. I’m really at a point now where I say that I don’t want to live like this anymore. Because it’s becoming unbearable’ (P27, f, 26y).\n‘Well, I really hope […], it sounds stupid like that, to feel more free in my own body’ (P09, f, 28y).\n‘I really hope that my quality of life will be much, much, much better’ (P06, f, 25y)\n‘Wanting to live again and to keep on living. I’m really at a point now where I say that I don’t want to live like this anymore. Because it’s becoming unbearable’ (P27, f, 26y).\nAnother prevalent expectation was to be able to  pursue daily and leisure activities independent of menstrual period . Engaging in spontaneous and pleasure-oriented activities was anticipated to enhance quality of life. ‘Simply being able to make plans, exercise, meet friends, regardless of my period’ (P27, f, 31y).\n‘Simply being able to make plans, exercise, meet friends, regardless of my period’ (P27, f, 31y).\nParticipants also expected  reduced need for and improved efficacy of pain medication  for persistent endometriosis-related complaints. ‘And I hope [pain medication use] will decrease significantly or at least that the pain medication will help then’ (P15, f, 28y).\n‘And I hope [pain medication use] will decrease significantly or at least that the pain medication will help then’ (P15, f, 28y).\nSeveral participants expected  to receive a diagnosis  and  a post-operative treatment schedule . Some participants also expected this to lead to  self-compassion  and being kinder to themselves. ‘For one thing, the certainty of knowing where this is coming from, what I’m suffering from. Simply being able to put a name to the condition is an important factor’ (P25, f, 33y). ‘Once it’s confirmed, I’ll suddenly have the golden thread to guide me further along’ (P10, f, 42y). ‘Being able to be more considerate towards myself because I’ll know the reason, that it’s not psychosomatic’ (P10, f, 42y).\n‘For one thing, the certainty of knowing where this is coming from, what I’m suffering from. Simply being able to put a name to the condition is an important factor’ (P25, f, 33y).\n‘Once it’s confirmed, I’ll suddenly have the golden thread to guide me further along’ (P10, f, 42y).\n‘Being able to be more considerate towards myself because I’ll know the reason, that it’s not psychosomatic’ (P10, f, 42y).\nParticipants also expected  removal of endometrial tissue  and  no side effects  from laparoscopy. ‘Them finding something that can be removed as much as possible. Or preferably completely’ (P02, f, 33y). ‘Not having any major side effects, afterwards’ (P31, f, 35y).\n‘Them finding something that can be removed as much as possible. Or preferably completely’ (P02, f, 33y).\n‘Not having any major side effects, afterwards’ (P31, f, 35y).\nSome participants just expressed  curiosity  regarding treatment but no direct expectations. I’m very curious about the results because doctors always tell me that everything is alright physically.\nI’m very curious about the results because doctors always tell me that everything is alright physically.\nOther participants explicitly expressed  neutral expectations  regarding laparoscopy and their post-operative quality of life, wishing to avoid potential disappointment while still hoping for improvement. ‘Well, I’m not the type to have great expectations. Because otherwise I’ll just be disappointed if nothing changes. That’s why I prefer to think, well, let’s just see and hope that it will go well, of course’ (P22, f, 33y).\n‘Well, I’m not the type to have great expectations. Because otherwise I’ll just be disappointed if nothing changes. That’s why I prefer to think, well, let’s just see and hope that it will go well, of course’ (P22, f, 33y).\nSome participants expected  complaints to persist  after laparoscopy. One participant mentioned expecting a post-operative  increase in complaints . ‘To be honest, I don’t think it will help much’ (P26, f, 29y). ‘Or the pain becoming even worse, maybe’ (P27, f, 26y).\n‘To be honest, I don’t think it will help much’ (P26, f, 29y).\n‘Or the pain becoming even worse, maybe’ (P27, f, 26y).\nBased on previous treatment experiences, some participants expected their  complaints to be invalidated  by healthcare providers. ‘Not being taken seriously afterwards’ (P07, f, 39y).\n‘Not being taken seriously afterwards’ (P07, f, 39y).\nRegarding laparoscopy, some participants expected  side effects  (e.g., CO 2 -related shoulder pain, pain at the penetration point) and  scarring . Because of anticipated side effects, some participants also expected  prolonged recovery from post-operative pain . ‘Yes, well, some things that will happen after the laparoscopy. Pain during urination. Pain in the abdominal area’ (P03, f, 36y). ‘My body also taking a long time to completely […] get back to normal and recover as I’d like it to’ (P17, f, 31y).\n‘Yes, well, some things that will happen after the laparoscopy. Pain during urination. Pain in the abdominal area’ (P03, f, 36y).\n‘My body also taking a long time to completely […] get back to normal and recover as I’d like it to’ (P17, f, 31y).\nBased on a positive experience with inpatient laparoscopy, one participant expected an  outpatient laparoscopy to be inappropriate  and feared a lack of medical attention and support.\nSome participants also expected  not to receive a diagnosis  and an associated  post-operative treatment schedule . ‘That endometriosis isn’t confirmed to the extent it’s currently predicted, and I’m back to square one, still searching for a guiding thread’ (P07, f, 36y).\n‘That endometriosis isn’t confirmed to the extent it’s currently predicted, and I’m back to square one, still searching for a guiding thread’ (P07, f, 36y).\nSeveral participants mentioned  anxieties  but no explicit negative expectations regarding laparoscopy. Some women feared  surgical complications  such as intra-operative organ damage. ‘And I haven’t slept in days because I’m just very anxious about this operation as such’ (P35, f, 36y). ‘And that’s also a very big fear, […], that I might be somehow damaged because something happens during the operation’ (P17, f, 31y).\n‘And I haven’t slept in days because I’m just very anxious about this operation as such’ (P35, f, 36y).\n‘And that’s also a very big fear, […], that I might be somehow damaged because something happens during the operation’ (P17, f, 31y).\nFacilitators and barriers are divided into  short-term  and  long-term quality of life .\nWhen asked about facilitators for post-operative quality of life, participants mentioned positive expectations coming true as facilitators, specifically  “ receiving a diagnosis,” “validation of complaints”, \" improvement of complaints”, “improved mental health”, “absence of complaints”, “bodily agency”, “the ability to pursue daily and leisure activities independent of menstrual period”, “becoming pregnant”, “removal of endometrial tissue” and a “post-operative treatment schedule ”.  Further facilitators are listed below.\nParticipants mentioned that  rapid recovery from post-operative pain  would be necessary for their post-operative quality of life. ‘Making good progress after the operation. Like, it not taking long until I’m not in pain anymore’ (P29, f, 34y).\n‘Making good progress after the operation. Like, it not taking long until I’m not in pain anymore’ (P29, f, 34y).\nSome participants felt inadequately informed about laparoscopic treatment and would have liked  more treatment and patient information  (e.g. about side effects, post-operative pain management, and surgical results). Furthermore, participants wished for more  professional support and medical aftercare , especially from gynaecologists in private practice. Having a qualified contact person to provide reassurance in an emergency was anticipated to be helpful for post-operative quality of life. ‘When you feel well-informed and […], basically, they just explain what has happened and tell you that, okay, these are normal complaints that may occur afterwards’ (P11, f, 31y). ‘Also, my gynaecologist’s further support and supervision is very important, I think […]. Being, like, taken care of a bit and not left alone’ (P12, f, 28y).\n‘When you feel well-informed and […], basically, they just explain what has happened and tell you that, okay, these are normal complaints that may occur afterwards’ (P11, f, 31y).\n‘Also, my gynaecologist’s further support and supervision is very important, I think […]. Being, like, taken care of a bit and not left alone’ (P12, f, 28y).\nSome participants expressed dissatisfaction with current treatment options and wished for  new complementary treatments  alongside existing ones. Referring to past treatment experiences, one participant also mentioned that an  inpatient stay  would be more suitable to facilitate post-operative quality of life. ‘They usually tell you that, afterwards, you’ll either have to get pregnant or take the pill. And I’m not really keen on the pill because I’ve always had adverse reactions. And it would be great if […] it turns out, through research or whatever, that there is a third alternative’ (P12, f, 28y).\n‘They usually tell you that, afterwards, you’ll either have to get pregnant or take the pill. And I’m not really keen on the pill because I’ve always had adverse reactions. And it would be great if […] it turns out, through research or whatever, that there is a third alternative’ (P12, f, 28y).\nParticipants anticipated that  rest  and  light exercise  would positively impact their post-operative quality of life. ‘Rest, definitely, and giving yourself time’ (P15, f, 28y). ‘Trying to keep as active as possible, within reason, of course’ (P17, f, 31y).\n‘Rest, definitely, and giving yourself time’ (P15, f, 28y).\n‘Trying to keep as active as possible, within reason, of course’ (P17, f, 31y).\nSome participants mentioned that  treatment adherence  would have a positive impact. ‘Well, complying with what the doctors say or with the action plan, doing what is necessary’ (P19, f, 40y).\n‘Well, complying with what the doctors say or with the action plan, doing what is necessary’ (P19, f, 40y).\nParticipants expressed that  awareness and understanding of the treatment procedure  would contribute to better post-operative quality of life. Particularly, some participants referred to good experiences with their clinic or having knowledge of the treatment process from their own professional experience. 'So, I’m familiar with the process through my work, and that’s why I don’t really have any fears about it. Or any negative attitudes.'\n'So, I’m familiar with the process through my work, and that’s why I don’t really have any fears about it. Or any negative attitudes.'\nParticipants stated that  supportive nutrition/diet  (e.g. anti-inflammatory) and  good tolerability of supplementarty hormon treatments  would positively impact their post-operative quality of life.olerability of supplementary hormone treatments ‘Positive aspects are, above all, adjusting my diet to my endometriosis’ (P18, f, 24y).\n‘Positive aspects are, above all, adjusting my diet to my endometriosis’ (P18, f, 24y).\nSocial support  was also cited as positively impacting post-operative quality of life, including a supportive work environment, peer-group exchanges, and understanding and supportive family and friends.\nMany participants reported frustrating experiences with their gynaecologists, which included invalidation of their complaints and disregarding complaints related to endometriosis over the years. Participants wished for  more gynaecologists specializing in endometriosis  and  greater awareness for endometriosis  to prevent years of waiting for a correct diagnosis and experiences of invalidation of endometriosis-related complaints and disability. ‘Only that more gynaecologists should be aware of this issue’ (P29, f, 34y) ‘I just think this study is super important to make people aware. I also talked about it with friends and told them, hey, I’m having an operation because I might have endometriosis and then they asked what that is and I think a woman, well, every woman should know what it is and gynaecologists should provide more information on this issue’ (P21, f, 34y).\n‘Only that more gynaecologists should be aware of this issue’ (P29, f, 34y)\n‘I just think this study is super important to make people aware. I also talked about it with friends and told them, hey, I’m having an operation because I might have endometriosis and then they asked what that is and I think a woman, well, every woman should know what it is and gynaecologists should provide more information on this issue’ (P21, f, 34y).\nIn addition, some participants anticipated that  collaboration among healthcare providers  would be a positive impact factor, mentioning how a ‘manager’ for pre- and post-operative treatment could facilitate coordination and communication between healthcare providers, providing more satisfactory patient care and support. ‘That’s what I feel is missing now in this laparoscopy process: a coordination role for the future as well, what happens next, who can support me, also to inform doctors because they don’t have any information at all, they don’t know anything’ (P10, f, 42y).\n‘That’s what I feel is missing now in this laparoscopy process: a coordination role for the future as well, what happens next, who can support me, also to inform doctors because they don’t have any information at all, they don’t know anything’ (P10, f, 42y).\nParticipants anticipated  post-operative pain  and  scarring  to present barriers to post-operative quality of life.\nSome participants indicated that  feeling poorly cared for during treatment  could negatively impact their post-operative quality of life. ‘It’s mostly about the treatment as such at the hospital […]. If you’re not being cared for properly, I think this will have some kind of psychological effect’ (P13, f, 29y).\n‘It’s mostly about the treatment as such at the hospital […]. If you’re not being cared for properly, I think this will have some kind of psychological effect’ (P13, f, 29y).\nSome participants perceived a potential  lack of patient information  and  subsequent treatment information  and  lack of treatment adherence  as a barrier to a positive outcome. ‘The gynaecologist, for example, doesn’t really give you much information, it’s not very much, basically. But all of these details that are really important, that is, what can happen and what it will be like and so on, is something I found out by doing my own research’ (P17, f, 31y). ‘Not listening to doctors’ advice’ (P29, f, 34y).\n‘The gynaecologist, for example, doesn’t really give you much information, it’s not very much, basically. But all of these details that are really important, that is, what can happen and what it will be like and so on, is something I found out by doing my own research’ (P17, f, 31y).\n‘Not listening to doctors’ advice’ (P29, f, 34y).\nFurther barriers to post-operative quality of life were  insufficient rest  after surgery.\nNegative expectations  were also cited as barriers to post-operative quality of life. Particularly participants with prior  negative treatment experiences  mentioned worries about post-operative pain relief or a potential increase of complaints. ‘Maybe still being in pain because it’s in your head. Just because of anxiety that builds up over time. If that’s a factor somehow, sort of like the placebo effect’ (P17, f, 31y). ‘Well, I’ve had an operation before […] and I felt worse afterwards, the pain became even more severe’ (P27, f, 26y).\n‘Maybe still being in pain because it’s in your head. Just because of anxiety that builds up over time. If that’s a factor somehow, sort of like the placebo effect’ (P17, f, 31y).\n‘Well, I’ve had an operation before […] and I felt worse afterwards, the pain became even more severe’ (P27, f, 26y).\nSeveral participants anticipated that  not receiving a diagnosis  could negatively impact their post-operative quality of life. In this case, participants feared experiencing invalidation and needing further treatments. Some further stated that receiving an  unexpected diagnosis  would negatively impact their post-operative quality of life because of its potentially scary character. ‘The worst thing, which would really affect me, would be if they didn’t find anything’ (P30, f, 31y). ‘Well, my main concern is that there’s something physical that makes it even worse’ (P22, f, 30y).\n‘The worst thing, which would really affect me, would be if they didn’t find anything’ (P30, f, 31y).\n‘Well, my main concern is that there’s something physical that makes it even worse’ (P22, f, 30y).\nOne participant said being labelled  “a complex treatment case”  would negatively impact their post-operative quality of life, as it would be associated with unsatisfactory improvements in complaints and disability and further necessary treatments.  ‘If they tell me, “Ms [last name], yours is not a simple case”’ (P07, f, 39y).\n‘If they tell me, “Ms [last name], yours is not a simple case”’ (P07, f, 39y).\nOther participants cited  incomplete endometrial tissue removal ,  persistent complaints , and an  inability to get pregnant  as negative impact factors.  ‘Well, you see mothers with their children every day and this would be even worse for me’ (P27, f, 26y).\n‘Well, you see mothers with their children every day and this would be even worse for me’ (P27, f, 26y).\nMental health issues  (e.g. experiencing feelings of depression and emotional instability),  stress , an  unhealthy lifestyle , and  lack of social support  were also identified as barriers. ‘Depending on what results I’ll get after the operation. Just slipping deeper into this depression’ (P27, f, 26y). ‘If I didn’t have the support of my husband and family, who will just have to help me after the operation until I’ve recovered’ (P15, f, 28y).\n‘Depending on what results I’ll get after the operation. Just slipping deeper into this depression’ (P27, f, 26y).\n‘If I didn’t have the support of my husband and family, who will just have to help me after the operation until I’ve recovered’ (P15, f, 28y).\nFig. 1 Overview of pre-operative expectations regarding laparoscopy, facilitators for and barriers to post-operative quality of life\nOverview of pre-operative expectations regarding laparoscopy, facilitators for and barriers to post-operative quality of life\n\nWe aimed to understand patient expectations regarding laparoscopy and post-operative quality of life and to identify factors that act as facilitators of or barriers to post-operative quality of life. Three top-level categories –  complaints ,  disability , and  treatment  – were deductively assigned for positive and negative expectations. Following this, eighteen subcodes were identified for positive expectations and ten for negative expectations, inductively. Two top-level categories, short and long-term quality of life, were inductively identified, with 16 subcodes for facilitators and 15 for barriers. Positive expectations included significant improvement or absence of complaints, receiving a diagnosis, and the ability to pursue daily and leisure activities independent of menstrual period. Participants also named negative expectations, such as persistent complaints, feeling invalidated, and side effects. Some positive and negative expectations regarding laparoscopy and post-operative quality of life were also identified as facilitators of or barriers to post-operative quality of life. Concerning further facilitators and barriers, two main themes became apparent: (1) factors influencing  short-term quality of life , including lack of rest and insufficient treatment and patient information; (2) factors influencing  long-term quality of life , including more gynaecologists specializing in endometriosis, and heightened public awareness.\nFrequently reported complaints such as pelvic pain, dysmenorrhoea, dyspareunia, dysuria, and dyschezia align with previous quantitative and qualitative findings [ 6 ,  30 ] and are recognized as the main symptoms of endometriosis. Symptoms not or less often discussed in the literature include accompanying complaints such as gastrointestinal symptoms, water retention, and cystitis. Areas being affected by endometriosis-related disability, such as mental health, ability to work and sexual intimacy, are also consistent with previous studies [ 9 ,  31 ,  32 ]. Our findings once again underscore the physical and psychological burden on women with endometriosis, highlighting the imperative for interdisciplinary treatment approaches beyond medical interventions such as surgery.\nNo other qualitative studies have previously examined expectations towards laparoscopy in people with endometriosis. Patients mentioned concurrent positive and negative expectations towards laparoscopy and post-operative quality of life, which emphasizes the multidimensional concept of expectations [ 33 ], which also aligned with the baseline results of our ROXWELL study (Melrose et al., 2024). Identified positive expectations suggest that patients place much hope in the surgery, anticipating substantial improvements in complaints or disability following laparoscopy. Subsequently, they expect enhanced quality of life, such as the ability to engage in daily and leisure activities independently of their menstrual period. Another prevalent positive expectation was to receive a diagnosis and a post-operative treatment schedule, likely because many participants had previously experienced diagnostic delays and years of uncertainty. A comprehensive review by Young et al. [ 10 ] underscores the significance of validating patient complaints, especially after they have previously faced dismissal or invalidation from their social environment or healthcare professionals. Providing a label for the condition, initiating an appropriate treatment schedule, and guidance for future treatment opportunities can significantly enhance the patient’s overall well-being. Some participants positively anticipated a complete absence of complaints. However, given that 20 to 30% of patients report significant enduring post-operative complaints, and considering the established chronic nature of the disease [ 15 ,  34 ,  35 ], such an expectation appears unrealistic. Positive expectations corresponding to the placebo effect can enhance treatment outcomes for various medical conditions [ 36 ], but they may become problematic if they are unrealistically positive. Literature suggests that unrealistic pre-operative expectations that do not align with medically realistic treatment outcomes can result in disappointment and dissatisfaction [ 37 ,  38 ] and feelings of depression [ 39 ], subsequently contributing to a more negative perception of one’s complaints [ 40 ]. Providing more precise information on realistic treatment outcomes while highlighting the benefits of laparoscopy could help manage unrealistically positive expectations and mitigate post-operative disappointment with treatment outcomes.\nSome participants negatively expected persistent complaints, post-operative side effects, such as CO2-related shoulder pain, and prolonged recovery from surgical pain. Previous quantitative studies have shown that such negative expectations about potential side effects are associated with poor treatment outcomes due to nocebo effects [ 41 ,  42 ]. Providing information about the nocebo effect reduces negative expectations and positively impacts treatment outcomes [ 43 ,  44 ]. Therefore, endometriosis patients with negative expectations for laparoscopy may especially benefit from pre-operative information about the nocebo effect to minimize its risks and, in turn, improve treatment outcomes.\nPositive and negative expectations were sometimes verbalized as hopes and fears, respectively. It seems that patients distinguish between expectations and hopes along the lines of: “What can I expect and what would I hope for?“. Conceptually, hopes and expectations are separate constructs [ 45 ]. However, it is challenging to grasp because of its known relation. Previous research has linked hope to the concept of expectations, understanding hope as an emotional component of expectations [ 46 ]. Anxieties are also integral to the concept of expectations in the sense of negative future-oriented cognitions regarding treatment outcomes [ 47 ]. The coexistence of hopes and fears within the framework of expectations emphasizes the complexity of patient expectations. Hopes and realistic expectations should be explicitly differentiated in future studies. During participant checking, one participant stated that they wanted to expect improvement, but that endometriosis had often brought her back to reality in the past, thus making positive expectations unrealistic for them. This shows that cognitions fluctuate between hope and scepticism. Health professionals should be advised to take patient anxieties and fears seriously, be empathetic, and explore the nature of the fears involved. Proactively preventing anxieties and fears could also be achieved through effective/enhanced treatment and comprehensive patient information. Patient and treatment information could also prevent the risk of misinformation (e.g., through online self-research) and exploit the potential of placebo effects through good medical communication. As reported by Lukas et al. [ 48 ] and consistent with our identified facilitating factor, participants anticipated that enhanced treatment information, including guidance on managing post-operative symptoms, would positively impact their post-operative quality of life, particularly in the short term.\nConcerning further facilitators, women often wished for more gynaecologists who specialized in endometriosis to avoid diagnostic delays and experiences of invalidation. In their comprehensive review, Young et al. [ 31 ] highlight women’s experiences with health professionals with limited or no knowledge of endometriosis and conclude that improving education and knowledge about endometriosis would reduce diagnostic delay and enhance women’s care experience. Additionally, in our study, participants expressed that greater public awareness of endometriosis could indirectly enhance their quality of life as it would likely increase sympathy and understanding in their social environment, including from employers. Further facilitators included social support, physical activity, and nutrition [ 49 – 51 ]. Newly identified factors affecting short- and long-term post-operative quality of life include quick recovery from post-operative pain, treatment adherence, and collaboration among healthcare providers. Newly identified barriers to quality of life included post-operative pain and scarring, insufficient rest, lack of social support, and personal feelings of stress.\nOur findings provide insights into expectations related to laparoscopy and facilitators of and barriers to post-operative quality of life. Notably, this is one of the first qualitative studies to assess expectations in patients with endometriosis. Structural content analysis followed strict methodological standards for qualitative research. Participant checking increased patient involvement, clinical relevance, and the credibility of findings. Sampling may have been selective because patients with mostly negative expectations towards laparoscopy would not consider surgery, resulting in a more extensive range of positive pre-operative expectations than negative ones. Some interview questions were similar, so the participants’ answers sometimes overlapped. Future interview questions should be phrased more selectively to avoid repeating answers.\n\nPositive and negative expectations exist concurrently, underscoring the multidimensionality of expectations. Patients emphasized the significance of more comprehensive pre-and post-operative patient and treatment information. Information should encompass (1) enhanced information about the pre- and post-operative treatment process to alleviate treatment-related fears, (2) clear information about realistic treatment outcomes to shift unrealistic expectations towards more realistic ones, and (3) guidance for future treatment opportunities. Providing additional information about nocebo effects may help prevent adverse effects in patients with negative treatment expectations.\nAddressing the need for more endometriosis specialists may help mitigate diagnostic delays and experiences of invalidation, while greater public awareness of the condition may contribute to improved quality of life through greater sympathy and understanding. The facilitators and barriers identified in this study show that patients are experts regarding their disease. They are aware of practical ways to manage their complaints and are very clear about what is helpful or not in terms of their quality of life after laparoscopy. For this reason, patients should be actively involved in clinical research and developing intervention concepts.\n\nBelow is the link to the electronic supplementary material.\nSupplementary Material 1\nSupplementary Material 1\nSupplementary Material 2\nSupplementary Material 2\nSupplementary Material 3\nSupplementary Material 3","source_license":"CC0","license_restricted":false}