Is it time to agree upon a standardised approach to the assessment of contributing factors and impacts of adolescent pelvic pain?

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Abstract

BACKGROUND: A biopsychosocial approach to the understanding of pelvic pain is increasingly acknowledged. However, there is a lack of standardised instruments - or their use - to assess risk factors and their impact on pelvic pain in both clinical and research settings. This review aims to identify validated tools used to assess known contributory factors to pelvic pain, as well as the validated tools to measure the impact of pelvic pain in adolescents and young adults, in order to provide a framework for future standardised, adolescent specific assessment and outcome tools. METHODS: Literature searches were performed in MEDLINE, PsycInfo and PubMed. Search terms included pelvic pain, dysmenorrhoea, endometriosis, adolescent, pain measurement, quality of life, sleep, mental health, coping strategies and traumatic experience. RESULTS: We found validated instruments to assess adverse childhood experiences and coping strategies, both known contributing factors to pelvic pain. The impact of pain was measured through validated tools for health-related quality of life, mental health and sleep. CONCLUSIONS: Pelvic pain evaluation in adolescents should include a multi-factorial assessment of contributing factors, such as childhood adversity and coping strategies, and impacts of pelvic pain on quality of life, mental health and sleep, using validated instruments in this age group. Future research should focus on the development of consensus amongst researchers as well as input from young women to establish a standardised international approach to clinical trials involving the investigation and reporting of pelvic pain in adolescents. This would facilitate comparison between studies and contribute to improved quality of care delivered to patients.
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Abstract

Background:  A biopsychosocial approach to the understanding of pelvic pain is increasingly acknowledged. However, there is a lack of standardised instruments – or their use – to assess risk factors and their impact on pelvic pain in both clinical and research settings. This review aims to identify validated tools used to assess known contributory factors to pelvic pain, as well as the validated tools to measure the impact of pelvic pain in adolescents and young adults, in order to provide a framework for future standardised, adolescent specific assessment and outcome tools.

Methods

Literature searches were performed in MEDLINE, PsycInfo and PubMed. Search terms included pelvic pain, dysmenorrhoea, endometriosis, adolescent, pain measurement, quality of life, sleep, mental health, coping strategies and traumatic experience.

Results

We found validated instruments to assess adverse childhood experiences and coping strategies, both known contributing factors to pelvic pain. The impact of pain was measured through validated tools for health-related quality of life, mental health and sleep.

Conclusions

Pelvic pain evaluation in adolescents should include a multi-factorial assessment of contributing factors, such as childhood adversity and coping strategies, and impacts of pelvic pain on quality of life, mental health and sleep, using validated instruments in this age group. Future research should focus on the development of consensus amongst researchers as well as input from young women to establish a standardised international approach to clinical trials involving the investigation and reporting of pelvic pain in adolescents. This would facilitate comparison between studies and contribute to improved quality of care delivered to patients. PLAIN LANGUAGE SUMMARY Pelvic pain is pain located in the lower abdomen, and includes period pain, which is the most common gynaecologic condition in adolescents and young adults. An approach that includes biological, psychological and social factors is important to understand and manage pelvic pain. Nonetheless, these factors are often poorly assessed in the clinic and research setting. We performed a literature review to identify tools that measure risk factors for pelvic pain, and those that evaluate the impact of pelvic pain. We found instruments that measure exposure to childhood trauma and coping strategies, which are risk factors for developing pelvic pain. We found tools to assess quality of life, mental health and sleep as an impact of pelvic pain. A standardised approach to pelvic pain, including instruments to measure risk factors and impact of pelvic pain, would facilitate comparison between studies and improve quality of care for patients.

Introduction

Persistent or chronic pelvic pain is described a s cyclic or acyclic pain below the umbilicus of more than six months duration (Howard 2003). In the context of menstrual pain, this can be further divided into primary or secondary dysmenorrhoea. Primary dysmenorrhoea, or menstrual pain in the absence of identifiable disease is reported to affect up to 93% of adoles - cents (De Sanctis et  al. 2015). This pain, which is associated with th e physiological proc ess of endometrial shedding, is known to be an inflammatory process involving prostaglandins and inflammatory cytokines. Higher circulating levels of prosta - glandins have been found in individuals with dysmenorrhoea compared to those without, and these substances are thought to contribute to variations in menstrual symptoms and pain presentations (Iacovides et  al. 2015). Less commonly, menstrual pain in adolescents is asso ciated with pelvic pathology and © 2024 t he a uthor(s). Published by i nforma uK limited, trading as taylor & f rancis Group CONTACT dehlia Moussaoui [email protected] d epartment of Paediatrics, obstetrics and Gynaecology, Geneva university Hospitals, rue Willy-donzé 6, 1205 Geneva, s witzerland *t hese authors share first-authorship. +c urrent address: d epartment of Paediatrics, obstetrics and Gynaecology, Geneva university Hospitals, rue Willy-d onzé 6, 1205 Geneva, s witzerland supplemental data for this article can be accessed online at https://doi.org/10.1080/01443615.2024.2359126. https://doi.org/10.1080/01443615.2024.2359126 t his is an o pen a ccess article distributed under the terms of the c reative c ommons a ttribution license ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. t he terms on which this article has been published allow the posting of the a ccepted Manuscript in a repository by the author(s) or with their consent. ARTICLE HISTORY Received 7 January 2024 Accepted 18 May 2024

Keywords

Pelvic pain; dysmenorrhoea; risk factor; quality of life; mental health; adolescent GYNAECOLOGY 2 D. MOUSSAOUI ET AL. congenital anomalies of the genital tract and is referred to as secondary dysmenorrhoea (Sanfilippo and Erb 2008). Like all pain, pelvic pain is considered a personal experi - ence that is influenced by biological, psychological and social factors (Raja et  al. 2020). Data reported on period and pelvic pain in adolescents usually include biological factors such as the age of the participants, age at menarche, menstrual cycle characteristics, body mass index and smoking status. The extent to which current studies explore and acknowledge the impact of psycho-social factors—including adverse childhood experiences—in the presentation of period and pelvic pain is variable. Many of these factors are acknowledged in the set - ting of other paediatric and adolescent pain conditions (Groenewald et  al. 2020). Currently however, there are no agreed-upon standardised measures for identifying risk fac - tors for the development and the persistence of pelvic pain, nor are there standardised core outcome measures used by researchers assessing period and pelvic pain in adolescents, making it difficult to compare and contrast studies that endeavour to implement intervention strategies. Internationally it is increasingly recognised that having a standardised approach is valuable in optimising research and hence care for people with specific diagnoses. This approach has been developed in the setting of specific pain conditions as occurs in the Initiative on Methods, Measurement, and Pain Assessment in Clinical Trials (IMMPACT) with the devel - opment of consensus reviews and recommendations for improving the design, execution, and interpretation of clinical trials of treatments for pain (Dworkin et  al. 2005). The Core Outcome Measures in Experimental Trials (COMET) Initiative shares a similar objective: to create a standardised set of out - comes for studies (Gargon et  al. 2017). Neither of these inter - national initiatives has considered a standardised approach to adolescent period and pelvic pain. Having a standardised approach to measuring predisposing factors as well as out - comes for adolescents with pelvic pain would allow the opti - mal opportunity for comparison between investigators and different patient cohorts, and ultimately help clinicians pro - vide the best care tailored to their adolescent patients. The first step to achieving this is to review the current literature for evidence regarding which factors and outcome measures to include, prior to an international expert group developing a consensus. This narrative review aims to explore the validated instru - ments required to comprehensively assess the factors contrib - uting to and impacts of pelvic pain in adolescents and young adults.

Methods

MEDLINE using the Ovid interface, PsycInfo and PubMed were searched using a combination of terms including pelvic pain, endometriosis, pain measurement, quality of life, sleep, men - tal health, abuse and impact in October 2022. The search strategy can be found in Supplementary Material . There was no systematic search of the literature. Papers reporting vali - dated tools to assess contributing factors to and impacts of pelvic pain (including dysmenorrhoea) in female adolescents and young adults (10–25 years old) were identified. Data about validated tools were extracted, however we did not include all studies reporting on these instruments, and focused on the most relevant (in terms of quality, number of participants and date of publication). Demographic data of participants, pain scores and instruments used to evaluate risk factors and impacts of pelvic pain were retrieved by two authors (DM and OF) and reported in a self-design form for data abstraction. Disagreements were resolved by a third author (SG). Studies investigating only urinary tract causes of pelvic pain were excluded, because these are rare in female adolescents and young adults. Due to the study design, ethi - cal registration was not required.

Results

Table 1 summarises included studies and validated instru - ments used to assess predisposing factors and impacts of pelvic pain. Contributing factors Adverse childhood experiences Adverse childhood experiences (ACEs) are defined as trau - matic events occurring before the age of 18, such as experi - encing abuse, neglect or household dysfunction (Felitti et  al. 1998), and have been linked to poor health outcomes, includ - ing chronic pelvic pain (Krantz et  al. 2019, Moussaoui et  al. 2023). A recent systematic review on ACEs and pelvic pain in adolescents and young adults found only one study explor - ing this association through a validated score (Moussaoui and Grover 2022): You et  al. used the Early Trauma Inventory Self-report (ETISR), which is a 27-item questionnaire covering four domains of traumatic events (general, physical, emo - tional and sexual trauma) before the age of 18 (You et  al. 2019). They showed an association between the number and severity of ACEs and the risk of dysmenorrhoea (You et  al. 2019). A 1 SD increase in ETISR score was associated with a 39% increase in the odds of dysmenorrhoea (OR = 1.39; 95% CI, 1.24–1.57) (You et  al. 2019). BMI Body Mass Index (BMI) was explored as a predisposing factor in many cross-sectional studies and no relationship was found between menstrual pain and BMI (Gagua et  al. 2013, Slater et al. 2015, Suvitie et al. 2016, Gallagher et al. 2018, Wong 2018). Coping strategies Coping strategies relate to how stressful and difficult life events are managed by individuals. In the setting of chronic pain conditions, maladaptive coping strategies may impact negatively on pain experience and quality of life (Alok et  al. 2014). The Coping strategies inventory (CSI) is a 40-item scale with a 5-point Likert response format, assessing eight main strategies to cope with stress and difficulties, including Problem solving, Cognitive restructuring, Social support, Express emotions, Problem avoidance, Wishful thinking, Social TOOLS TO ASSESS CONTRIBUTING FACTORS AND IMPACTS OF PELVIC PAIN 3 Table 1. c ontributing factors to and impacts of pelvic pain and their validated tools. a ssessment c itation study design Population, with age range and/or mean age, yr instruments used Key results c ontributing factors to pain a dverse childhood experiences you at al. Pain Medicine 2019 – usa c ross-sectional 2222 f emale students, mean age 18.8. etisr c orrelation between the number and severity of adverse childhood events and the risk of dysmenorrhoea. bMi suvitie et  al. JPaG 2016 – f inland c ross-sectional 1103 s tudents, including 354 without menstrual pain, 101 with mild pain, 279 with moderate pain and 355 with severe pain, aged 15–19 years (mean 16.8). bMi no relationship between bMi and menstrual pain severity. Wong et  al. r eproductive Health 2018 – Hong Kong c ross-sectional 653 s econdary school students, including 428 with dysmenorrhoea and 225 without, aged 13–19 (mean 15.7). no difference in bMi between participants with and without dysmenorrhoea. Gallagher et  al. JaH 2018 – usa c ross-sectional 567 Participants in the ‘Women’s health study: from adolescence to adulthood’ , including 360 cases (surgically confirmed endometriosis) and 207 controls, aged 10–24 years. no difference in bMi between participants with surgically confirmed endometriosis and controls. Gagua et  al. JPaG 2013 – Georgia c ross-sectional 424 s tudents, including 276 with dysmenorrhoea and 148 without, aged 14–20. no difference in bMi between participants with and without dysmenorrhoea. slater et  al. Pain 2015 – a ustralia c ross-sectional 432 Participants in the ‘Western a ustralian Pregnancy c ohort s tudy’ , who completed the question of period pain at 20 and 22 year old. no relationship between bMi and menstrual pain severity. c oping strategies Gonzalez-echevarria et  al. J Psychosom obstet Gynaecol 2019 – usa c ross-sectional 24 Participants from the ‘endo teens initiative’ with surgically confirmed endometriosis, aged 13–25. csi Positive correlation between HrQol scores and autocriticism in young people with endometriosis. negative correlation between HrQol and emotion expression, social support, cognitive restructuring and social withdrawal. Kato et  al. Pain Practice 2017 – Japan c ross-sectional 186 c ollege students with menstrual pain, aged 18–23 years (mean 18.9). csQ-r c orrelation between menstrual pain coping flexibility and reduced depressive symptoms during menstruation. impact of pain Health-related quality of life Wong et  al. r eproductive Health 2018 – Hong Kong c ross-sectional 653 s econdary school students, including 428 with dysmenorrhoea and 225 without, aged 13–19 (mean 15.7). sf36 l ower HrQol score in adolescents with dysmenorrhoea compared to controls. Gallagher et  al. JaH 2018 – usa c ross-sectional 567 Participants in the ‘Women’s health study: from adolescence to adulthood’ , including 360 cases (surgically confirmed endometriosis) and 207 controls, aged 10–24 years. l ower HrQol scores in adolescents and young adults with endometriosis compared with controls. Vannucini et  al. r eprod s ci 2020 – i taly c ross-sectional 112 a thletes, including 69 with dysmenorrhoea, mean age 19.3. sf12 no association between HrQol and dysmenorrhoea. sahin et  al. r eproductive Health 2018 – turkey c ross-sectional 101 adolescents presenting to an outpatient clinic, including 60 for dysmenorrhoea, and 41 for another reason, aged 12-18. PedsQl l ower HrQol score in adolescents with dysmenorrhoea compared to controls. nur a zurah et  al. JPaG 2013 – a ustralia c ross-sectional 184 adolescents presenting to a gynaecology clinic for menstrual disorders, aged 13–18 (mean 15.1). l ower physical and school functioning HrQol scores in adolescents with dysmenorrhoea compared to adolescents with other menstrual disorders. iacovides et  al. a cta obstet Gynecol s cand 2014 – s outh a frica Prospective longitudinal 21 f emale (12 with severe dysmenorrhoea and 9 with no/mild/moderate dysmenorrhoea), mean age 21 and 22 respectively. Q-les -Q-sf l ower HrQol score in women with severe dysmenorrhoea in the menstruation phase compared with controls and with their own pain-free follicular phase. Hoppenbrouwers et  al. eur J Pediatr 2016 – b elgium c ross-sectional 363 Girls, including 146 with dysmenorrhoea, aged 12.2–13.6 (mean 12.8). Mdot Painful menstruation have a negative impact on HrQol compared to menstruation that are not painful. Parker et  al. bJoG 2009 – a ustralia c ross-sectional 1051 students, including 317 with no or mild dysmenorrhoea, 505 with moderate dysmenorrhoea and 217 with severe dysmenorrhoea, aged 8–19 (mean 16.8). c orrelation between severity of dysmenorrhoea and interference with life activities. a l Jefout et  al. JPaG 2015 – Jordan c ross-sectional 272 Medical students, including 152 with moderate or severe dysmenorrhoea, aged 19–25 (mean 22). c orrelation between severity of dysmenorrhoea and interference with life activities. Gonzalez-echevarria et  al. J Psychosom obstet Gynaecol 2019 – usa c ross-sectional 24 Participants from the ‘endo teens initiative’ with surgically confirmed endometriosis, aged 13–25. eHP-5 no correlation between HrQol and pain levels among young women with endometriosis. (Continued) 4 D. MOUSSAOUI ET AL.a ssessment c itation study design Population, with age range and/or mean age, yr instruments used Key results Mental health balik et  al. JPaG 2014 – t urkey c ross-sectional 159 Participants presenting to a gynaecology clinic, including 51 with dysmenorrhoea and 108 without, aged 13–18 (mean 17.7). bdi, bai Higher scores of depression and anxiety in adolescents with dysmenorrhoea compared with those without dysmenorrhoea. Gagua et  al. JPaG 2013 – Georgia c ross-sectional 424 s tudents, including 276 with dysmenorrhoea and 148 without, aged 14–20. bdi, stai and t Mas Higher proportion of depression and anxiety among individuals with dysmenorrhoea compared to those without dysmenorrhoea. Gonzalez-echevarria et  al. J Psychosom obstet Gynaecol 2019 – usa c ross-sectional 24 Participants from the ‘endo teens initiative’ with surgically confirmed endometriosis, aged 13–25. bdi-ii, bai Moderate-severe levels of depression in 33.4% of participants. Moderate-severe levels of anxiety in 45.8% of participants. slater et  al. Pain 2015 – a ustralia c ross-sectional 432 Women from the ‘Western a ustralian Pregnancy c ohort s tudy’ , who completed the question of period pain at 20 and 22 year old. dass -21 severe dysmenorrhoea associated with higher scores of depression, anxiety and stress. a mbresin et  al. JPaG 2012 – s witzerland c ross-sectional 3340 a dolescents, including 414 with severe dysmenorrhoea and 2926 with no, mild or moderate dysmenorrhoea, aged 16–20. depressive tendencies scale a djusted odds ratio of depressive symptoms of 1.83 (95%ci 1.49–2.25) in adolescents with severe dysmenorrhoea compared to those with no, mild or moderate dysmenorrhoea. Post traumatic stress disorder takeda et  al. JPaG 2013 – Japan c ross-sectional 1180 s tudents, including 167 with no dysmenorrhoea, 396 with mild dysmenorrhoea, 471 with moderate dysmenorrhoea and 146 with severe dysmenorrhoea, aged 15–18 (mean 16.7). ies-r significant association between the severity of dysmenorrhoea and Ptsd symptoms. sleep liu et  al. sleep 2017 – china c ross-sectional 5800 a dolescents from the ‘shandong a dolescent b ehaviour and Health c ohort’ , aged 12–18 (mean 15). PsQi increased risk of insomnia symptoms in adolescents with severe dysmenorrhoea compared to those with no or moderate pain. Wang et  al. sleep J 2019 – china c ross-sectional 5813 a dolescents from the ‘shandong a dolescent b ehaviour and Health c ohort’ , aged 12–18 (mean 15). cadss a ssociation between daytime sleepiness and level of dysmenorrhoea. slater et  al. Pain 2015 – a ustralia c ross-sectional 432 Women from the ‘Western a ustralian Pregnancy c ohort s tudy’ , who completed the question of period pain at 20 and 22 year old. PsQi no relationship between sleep quality and menstrual pain severity. Abbreviations: bai: b eck a nxiety i nventory; bdi: b eck d epression i nventory; bdi-ii: b eck d epression i nventory – ii; bMi: body mass index; cadss: chinese a dolescent daytime sleepiness s core; csQ-r: c oping s trategies Questionnaire – r evised; csi: c oping s trategies i nventory; dass -21: d epression a nxiety s tress s cale-21; eHP-5: endometriosis Health Profile-5; etisr: early t rauma i nventory s elf r eport; HrQol: health related quality of life; ies-r: i mpact of e vent s cale – r evised; Mdot : menstrual disorder of teenagers; PedsQl: Paediatric Quality of life i nventory; PPiQ: Pelvic Pain i mpact Questionnaire; PsQi: Pittsburg sleep Quality i ndex; Ptsd: post-traumatic stress disorder; Q-les -Qsf : Quality of life enjoyment and s atisfaction Questionnaire short f orm; sf12: short f orm 12; sf36: short f orm 36; stai: spielberger s tate-t rait a nxiety i nventory Questionnaire; t Mas: taylor Manifest a nxiety s cale. Table 1. c ontinued. TOOLS TO ASSESS CONTRIBUTING FACTORS AND IMPACTS OF PELVIC PAIN 5 withdrawal and Self-criticism (Ryan-Wenger 1990). The CSI was used in a study specifically assessing HRQOL in young patients with endometriosis: HRQOL scores were positively correlated with autocriticism, and negatively correlated with emotion expression, social support, cognitive restructuring and social withdrawal (Gonzalez-Echevarria et  al. 2019). In the same study, pain scores did not correlate with HRQOL, whereas coping strategies did (Gonzalez-Echevarria et al. 2019). Another assessment tool reported in the literature is the Coping Strategies Questionnaire-Revised (CSQ-R), which is specifically designed to measure chronic pain coping strate - gies (Riley and Robinson 1997). It includes 27 items and 6 subscales: distraction, catastrophizing, ignoring of pain, dis - tancing from pain, self-statements and praying (Riley and Robinson 1997). The Coping Flexibility Scale (CFS) is a 5-item scale assessing the extent of flexibility of individuals in cop - ing with stress (Kato 2012). Using both the CSQ-R and the CFS, a cross-sectional study among 186 students found that menstrual pain coping flexibility was significantly associated with reduced depressive symptoms during menstruation (Kato 2017). Impacts of pelvic pain Health related quality of life The impact of dysmenorrhoea and pelvic pain on health-related quality of life (HRQOL) was measured using both validated generic and condition specific instruments. Generic instruments included the Short Form 36 (SF-36) (Gallagher et  al. 2018, Wong 2018), Short Form 12 (SF-12) (Vannuccini et al. 2020), the Paediatric Quality of Life Inventory (PedsQL) (Nur Azurah et  al. 2013, Sahin et  al. 2018) and the Short Form of Quality of Life Enjoyment and Satisfaction Questionnaire (Q-LES-Q-SF) (Iacovides et  al. 2014). Condition-specific instruments included the Menstrual Disorder of Teenager (MDOT) (Parker et  al. 2010, Al-Jefout et al. 2015, Hoppenbrouwers et al. 2016) and the Endometriosis Health Profile-5 (EHP-5) (Gonzalez-Echevarria et  al. 2019). The SF-36 consists of 36 questions measuring eight HRQOL domains: physical functioning, role-physical, bodily pain, gen - eral health, vitality, social functioning, role-emotional and mental health (Ware and Sherbourne 1992). A case-control study reported that participants with surgically diagnosed endometriosis scored lower in both physical (mean ± SD: 43.7 ± 11.2) and mental components (43.5 ± 12.2) compared to controls with no history of endometriosis (53.9 ± 7.8, p < 0.001; and 46.4 ± 11.1, p = 0.01 respectively) (Gallagher et  al. 2018). While all domains were impaired, limitations due to bodily pain were the most considerable (Gallagher et  al. 2018). Using the SF-36, Wong et  al. showed that adolescents with severe dysmenorrhoea had lower scores in the bodily pain domain compared to those with only mild or moderate dysmenor - rhoea (Wong 2018). The SF-12 consists of 12 questions, all selected from the SF-36. A cross-sectional study showed no association between SF-12 score and the presence of dys - menorrhoea among a population of young athletes and con - trols (Vannuccini et  al. 2020). The PedsQL self-report form designed for adolescents aged 13–18 years includes 23 items and explores psychosocial and physical health by assessing physical, emotional, social and school functioning (Sweeney et  al. 2020). Using the PedsQL, Sahin et  al. reported that adolescents with dysmen - orrhoea had a significantly lower quality of life (mean ± SD: 63.60 ± 8.98) compared to adolescents without period pain (79.67 ± 9.37, p = 0.000) (Sahin et  al. 2018). Another study per - formed among adolescents presenting with menstrual issues to a gynaecology clinic, showed that adolescents with dys - menorrhoea scored lower in the physical and school func - tioning than girls with other menstrual problems (Nur Azurah et  al. 2013). The MDOT is a questionnaire exploring characteristics of menstruation, period pain and interference of periods with quality of life (Parker et  al. 2010). Impact on different life activities is investigated, such as school or work, social activ - ities, sport, relationships with family, friends and partner, and sexual activity. The MDOT study performed among more than 1000 adolescents showed a significant association between severity of pain and interference with life activities (Parker et  al. 2010). Similar results were found in another cross-sectional study among medical students (Al-Jefout et  al. 2015). Also using the MDOT, another study found that a higher proportion of 13-year old girls indicated that menstru - ation negatively impacted their quality of life if their periods were painful than if they were not (41.3 vs 14.2%, RR = 2.9, IC 2–4.4, p < 0.001) (Hoppenbrouwers et  al. 2016). The EHP-5 is an instrument measuring different domains of HRQOL relating to endometriosis, such as illness, indepen - dent living, physical ability, psychological state and social interactions, and is validated for use in individuals 17 years or older. Gonzalez-Echevarria et  al. found no correlation between EHP-5 score and pain levels in 24 young women with endo - metriosis (Gonzalez-Echevarria et  al. 2019). The Q-LES-Q-SF is a short form derived from a 93-item questionnaire and evaluates overall enjoyment and satisfac - tion regarding physical health, mood, work, household and leisure activities, family and social relationships, ability to func - tion in daily life, sexual drive, economic status, living/housing situation, ability to get around physically, ability to do work and hobbies and sense of being (Endicott et  al. 1993). Using the Q-LES-Q-SF, Iacovides et  al. showed that young women with dysmenorrhoea reported poorer HRQOL in the menstru - ation phase (mean ± SD: 54 ± 18%) compared with controls (81 ± 10%; p < 0.0001) and compared with their own pain-free follicular phase (80 ± 14%; p < 0.0001) (Iacovides et  al. 2014). Mental health The findings in relation to mental health were largely consis - tent, with more anxiety and depressive symptoms in adoles - cents with severe pelvic pain compared to those without pelvic pain (Ambresin et  al. 2012, Gagua et  al. 2013, Balık et  al. 2014, Slater et  al. 2015). Standardised tools used to assess depressive symptoms included the Beck Depression Inventory (BDI) and BDI-II (revised version of the BDI), which are 21-item self-report questionnaires (Beck et  al. 1997), and 6 D. MOUSSAOUI ET AL. the Depressive Tendencies Scale, which includes 8 items (Holsen et  al. 2000). Anxiety was assessed using the Beck Anxiety Inventory (BAI), which is a 21-item self-report scale (Beck et  al. 1988), the Spielberger State-Trait Anxiety Inventory questionnaire (STAI) (Spielberger et  al. 1983; Manual for the State-Trait Anxiety Inventory. Consulting Psychologists Press, Palo Alto), and the Taylor Manifest Anxiety Scale (TMAS) (Taylor 1953). The Depression, Anxiety and Stress Scale (DASS-21) (Slater et  al. 2015) was used in one study, and includes 21 items assessing degrees of depression, anxiety and stress over the last week (Page et  al. 2007). One cross-sectional study identified that adolescents with post-traumatic stress disorder (PTSD) were more likely to have severe pelvic pain (Takeda et  al. 2013). PTSD symptoms were assessed using the Impact of Event Scale-Revised (IES-R), which includes 22 items on experiencing symptoms of intru - sion, avoidance, and hyperarousal over the last 7 days (Weiss and Marmar 1997; The Impact of Event Scale—Revised. In J. P . Wilson & T. M. Keane (Eds.), Assessing psychological trauma and PTSD (pp. 399–411). The Guilford Press). Sleep Two studies on the same cohort of adolescents identified a relationship between dysmenorrhoea and sleep disturbance, using the Pittsburg Sleep Quality Index (PSQI) (Liu, Chen, et  al. 2017) and the Chinese Adolescent Daytime Sleepiness Scale (CADSS) (Wang et  al. 2019). The PSQI includes 19 self-reported items related to sleep quality (Buysse et  al. 1989). Using the PSQI, Liu et  al. found an increased risk of insomnia symptoms in adolescents with severe dysmenor - rhoea compared to those with no or moderate pain in a cross-sectional study (Liu, Chen, et  al. 2017). The CADSS is a 7-item questionnaire measuring daytime sleepiness (Liu, Yang, et  al. 2017). Wang et  al. identified in their bootstrapping anal - ysis that it was not just menstrual pain severity that was associated with increased daytime sleepiness, but also mental health symptoms (Wang et  al. 2019). Conversely, Slater et  al. found no association between sleep quality and menstrual pain, but it should be noted that they used only one of the 19 items of the PSQI to assess sleep quality (Slater et  al. 2015).

Discussion

Pelvic pain is multifaceted, with physiological, psychological and social factors all contributing to pain experience (Edwards et  al. 2016). As such, the experience of adolescents is unique and warrants its own standardised assessment approach. Despite this, a consensus guideline on the assessment of ado - lescent pelvic pain has yet to be achieved, in both clinical and research settings. This review enabled us to identify several relevant and val - idated tools to assess contributing factors and impacts of pel - vic pain in adolescents and young adults. Consistent with the PedIMMPACT consensus for trials investigating paediatric chronic and recurrent pain (McGrath et  al. 2008), we found that ACEs, HRQOL and sleep should be included in the assessment of adolescent pelvic pain. However, our review found that exposure to ACEs was studied through a validated instrument in only one study. Impact of pelvic pain on HRQOL and sleep was explored through various assessment tools, making comparisons between studies com - plicated. Moreover, some of these tools were not designed or validated in adolescents and young adults, making their inter - pretation difficult. Instruments validated for adolescents and young adults should be used where such instruments exist. While the PedIMMPACT guidelines also recommend that over - all satisfaction with treatment should be included when assessing chronic and recurrent pain in adolescents, no stud - ies included in this review explored treatment satisfaction. In some cases, this is explained by the study design, where par - ticipants may have been yet to seek treatment. Future studies might consider adding this outcome. In addition to the factors already mentioned, this review found that coping strategies and mental health should also be explored when assessing pelvic pain in adolescents and young adults. The relationship between pelvic pain and men - tal health is bidirectional, since pelvic pain may lead to poorer mental health, and conversely poorer mental health may increase vulnerability to pelvic pain (Gagnon et  al. 2022). This was highlighted in a study of greater than 500,000 people from Sweden, where participants were twice as likely to develop mental illness after experiencing significant pain— including pelvic pain—and similarly were 1.9 times as likely to develop significant pain after a mental illness diagnosis (Bondesson et  al. 2018). Among the studies included in this review, there was no evidence of a temporal or causal rela - tionship between pelvic pain and mental health symptoms, owing to the cross-sectional design of the studies. A clear documentation of mental health when assessing pain may better inform the treatment of pelvic pain in adolescents. In addition, this review found an interplay between pelvic pain, mental health symptoms and sleep quality, highlighting the need for a multidisciplinary approach to management incorporating all factors. Studies exploring coping strategies and pelvic pain sug - gest that adolescents’ approach to managing pain, more than the severity of pain, may impact their pain experience, includ - ing associated mental health, and provide important informa - tion when assessing pelvic pain as well as further avenues for intervention. The PedIMMPACT consensus suggests that economic fac - tors should be considered in the assessment of adolescent chronic pain. Socio-economic status may have an impact on pelvic pain, though inconsistent results have been found in the literature (Armour et  al. 2020, Sachedina et  al. 2021). However, this factor was not explored in this review, owing to a lack of standardised measurement tools available to com - pare across studies and study populations. Similarly, impact of pelvic pain on school participation was not included in this review because of the lack of validated instruments to measure this outcome. Many studies have highlighted the negative impact of pelvic pain on school par - ticipation, with various and non-standardised outcomes such as missed days at school (Suvitie et  al. 2016, Wong 2018, Armour et  al. 2020, Munro et  al. 2023), poor concentration in TOOLS TO ASSESS CONTRIBUTING FACTORS AND IMPACTS OF PELVIC PAIN 7 the classroom (Eryilmaz et  al. 2010, Armour et  al. 2020), poor school functioning (Nur Azurah et  al. 2013), missed exams and poor exams performance (Eryilmaz et  al. 2010, Gonzalez-Echevarria et  al. 2019, Armour et  al. 2020).

Limitations

This review was limited by several factors. First, the defini - tion of pelvic pain varied throughout the studies, with some reporting pain severity and others using a dichoto - mic approach (presence versus absence of pain). This vari - ation was compounded by a lack of consistency in classifying the severity or presence of dysmenorrhoea. Pain severity was measured using a Visual Analogue Scale (VAS), other scales from moderate to severe or a Numerical Rating Scale (NRS) from 0 to 10, McGill Pain Questionnaire, Verbal Multidimensional Scoring (VMS) and sometimes impact on daily activities was accounted for in its definition. Some studies described rates of ‘self-reported’ dysmenorrhoea by participants, but did not mention how dysmenorrhoea was defined or whether its severity was assessed. Second, there was a large heterogeneity in tools used for some factors, such as HRQOL, making comparison between studies chal - lenging. In addition, some of the tools (such as SF-12 and SF-36) were not validated in the age group of study partic - ipants, making the results interpretation difficult. Third, some authors used only a few items from a scale, which did not correspond to the complete and validated score. Fourth, this review did not use a systematic approach, lim - iting the generalisability of our findings. In addition, included studies were not formally assessed for quality, although this was accounted for when interpreting the results.

Conclusion

This review has established that the assessment of pelvic pain in adolescents requires a multi-factorial approach both in exploring its contributing factors as well as measuring its out - come impact. Pelvic pain assessment in adolescents should include an assessment of pain severity, ACEs, coping strate - gies, HRQOL, mental health and sleep through validated scores that are age appropriate. Future research should focus on the development of consensus amongst researchers as well as input from young women themselves to establish a standardised international approach to clinical trials involving the investigation and reporting of pelvic pain in adolescents with a view to improving the care and long-term outcomes in these patients. Author contributions DM contributed to acquisition and analysis of data, interpretation of data and drafted the manuscript. OG contributed to the design of the study, acquired and interpreted the data, and drafted the manuscript. SG con - tributed to the design of the study, acquired and analysed the data, and reviewed the manuscript critically for important intellectual content. All authors approved the final version to be published and agree to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved. Disclosure statement No potential conflict of interest was reported by the author(s). Funding Dehlia Moussaoui was supported by a grant from the Fonds de Perfectionnement, Geneva University Hospitals, Geneva, Switzerland, and the Swiss National Science Foundation (Postdoc. Mobility grand number P400PM_199338). Data availability statement The data that support the findings of this study are available on request from the corresponding author.

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Outcome instruments

EHP-30 VAS-pain NRS-pain

Condition tags

dysmenorrheachronic_pelvic_painendometriosis

MeSH descriptors

Adaptation, Psychological Adaptation, Psychological Adaptation, Psychological Adaptation, Psychological Adaptation, Psychological Adaptation, Psychological Pelvic Pain Pelvic Pain Pelvic Pain Pelvic Pain Pelvic Pain Pelvic Pain Pelvic Pain Pelvic Pain Quality of Life Quality of Life Quality of Life Quality of Life Quality of Life Quality of Life

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