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Cited by 37Ovarian function and disordersEndometriosis Research and TreatmentReproductive Health and Technologies

A systematic review of lived experiences of people with polycystic ovary syndrome highlights the need for holistic care and co-creation of educational resources

Open access
Lau, Gar Mun, Elghobashy, Mirna, Thanki, Mansi, Ibegbulam, Shirley, Latthe, Pallavi, Gillett, Caroline D. T., O’Reilly, Michael W., Arlt, Wiebke +3 more·2022·Frontiers in Endocrinology
DOI 10.3389/fendo.2022.1064937PMC PMC9755159
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Abstract

Introduction: PCOS-related literature is mostly dominated by the medical perspective. However, the condition’s lifelong, far reaching, and multifaceted impacts highlight the importance to gain the perspectives from those with PCOS. Therefore, we performed a systematic review to explore the current literatures and gaps around the experiences and perceptions of those living with PCOS Method: A comprehensive search of seven electronic databases was conducted between July and October 2021. A total 34 from 1615 screened articles were included in this systematic review and subsequently coded using NVivo 12 software. The quality of individual studies was assessed by adaptation to the Critical Appraisal Skills Program (CASP) quality assessment tool. Results: Five domains were generated from the data: Signs/Symptoms, Diagnosis, Management, Perceptions, Resources and Improving Outcomes. Dissatisfaction surrounding the experience of diagnosis was common. Concerns surrounded perceived lack of knowledge from healthcare professionals and delays in diagnosis. Individual studies on adults and adolescents shared similar feelings. The consensus was found to be that current management was vague and generalised. Symptoms such as hirsutism, obesity, irregular menstruation challenge personal and societal expectations of femininity. Online PCOS resources are popular amongst those with PCOS but most of them lack evidence. A call for more culturally specific resources was found to be common ground amongst those with PCOS. Conclusion: Overall dissatisfaction amongst adults and adolescents regarding their diagnostic journey of PCOS. Tailored and culturally specific PCOS advice and management is necessary and can be achieved through co-creation of resources between healthcare professionals and those with PCOS. Systematic review registration: https://www.crd.york.ac.uk/prospero/ , identifier CRD42021272371.

AI snapshot

Written from the paper’s full text.

TL;DR

This systematic review of 34 studies found that people with PCOS report overall dissatisfaction with diagnosis and management, with delays, perceived lack of clinician knowledge, and vague advice. It concludes that holistic, culturally specific care and co-created educational resources are needed.

Key findings

  • Diagnostic dissatisfaction was common: in one included study, diagnosis took >2 years in 24% of women and 39% saw three or more health professionals before diagnosis; another found time from first seeking medical attention to diagnosis ranged from 1 week to 8 years.
  • Management was often described as vague and generalised; some received no lifestyle advice, and a study of 657 women found 99% were interested in complementary therapies.
  • Symptoms such as hirsutism, obesity, and irregular menstruation challenged personal and societal expectations of femininity, and adults and adolescents shared similar feelings.
  • Online PCOS resources were popular but often lacked evidence; a review of 15 PCOS-related websites concluded none provided complete information, and calls for culturally specific resources were common.

Methods

  • Systematic review and qualitative thematic synthesis; seven electronic databases were searched between July and October 2021, identifying 1615 studies, reducing to 979 after duplicates, with 34 included.
  • Included original research studies of people with suspected/confirmed PCOS of any age, with no restrictions on age, ethnicity, or health status; excluded reviews, case reports, case series, and animal studies.
  • Data were coded in NVivo 12 using Thomas and Harden’s thematic synthesis approach; two researchers independently coded full texts while blinded to the review objective, and codes were merged and overseen by senior researchers. Quality was assessed using an adaptation of the Critical Appraisal Skills Programme (CASP) tool.

Limitations

  • The paper states most included studies collected data in high-income, predominantly English-speaking countries, with a lack of literature from primarily Black or African nations and a paucity of data from low- and middle-income countries, so findings may not reflect non-English-speaking communities globally.
  • The paper states they did not include non-scientist people with PCOS as part of the research team to avoid subjectivity and measurement bias; instead, undergraduate students with none to minimal research background coded the studies while blinded.
  • Evident from the text: included studies varied widely in design, populations, and recruitment methods (including support groups, social media, clinics, and universities), which may limit comparability and generalisability.

Model-written summary. Check it against the paper before relying on it.

Integrity signals

Registry

Crossref · 10.3389/fendo.2022.1064937

Cites

54 of 54 references verified0 citation errors · 0 not checkable

Statistics

Nothing to recompute.

Claims the paper makes

0 of 96 cited sources checked · 0 supported · 0 flagged

  • Findingcitation

    Some people with PCOS reportedly suffered anxiety due to uncertainty as to when their next period will be.

    “Some reportedly suffered anxiety due to uncertainty as to when their next period will be (26).”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [26] Health-related quality of life among adolescents with polycystic ovary syndrome JonesGL HallJM LashenHL BalenAH LedgerWL J ObstetGynecol Neonatal Nurs402011

      Not checked in the free run.

  • Findingcitation

    Symptoms of depression and anxiety affected women with PCOS, particularly those reporting subfertility.

    “Deeks et al. (3) reported that symptoms of depression and anxiety affected women with PCOS particularly those reporting subfertility.”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [3] Anxiety and depression in polycystic ovary syndrome: a comprehensive investigation DeeksAA Gibson-HelmME TeedeHJ Fertil Steril932010

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  • Findingcitation

    Many people with PCOS reported fear of being unable to conceive children.

    “Many people with PCOS reported fear of being unable to conceive children.”
    Quote in the paperNot a substantial claim
  • Findingnone given

    In young adults, the inconvenience of irregular menstrual bleeding had major consequences on their social life.

    “In young adults the inconvenience of irregular menstrual bleeding also had major consequences on their social life.”
    Quote in the paperNot a substantial claim
  • Findingcitation

    Dissatisfaction surrounding the experience of diagnosis was common.

    “Dissatisfaction surrounding the experience of diagnosis was common.”
    • Also stated in: § Conclusion · plain
      “Overall dissatisfaction amongst adults and adolescents regarding their diagnostic journey of PCOS.”
    • Also stated in: § 3.2. Diagnosis of PCOS · plain
      “Frustration regarding the process of diagnosis was common in a study of 657 women with PCOS by Sils et al. (42).”
    Quote in the paperSubstantial claim
  • Classified as probably not a substantial claim. 29
  • May combine two claims. 34
  • The quote only partly states this claim. 1

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Findingcitation

    Many adolescents were not overly concerned about their chances of fertility as it was not deemed an imminent priority.

    “However, the study by Jones et al. found that many adolescents were not overly concerned about their chances of fertility as it was not deemed an imminent priority (26).”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [26] Health-related quality of life among adolescents with polycystic ovary syndrome JonesGL HallJM LashenHL BalenAH LedgerWL J ObstetGynecol Neonatal Nurs402011

      Not checked in the free run.

  • May combine two claims.

    Findingcitation

    In a study conducted in Iran, infertile women were more likely to be subjected to domestic violence; they were also isolated from social events and family.

    “A study conducted in Iran found infertile women were more likely to be subjected to domestic violence; they were also isolated from social events and family (31).”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [31] The social consequences of infertility among Iranian women: A qualitative study Hasanpoor-AzghdySB SimbarM VedadhirA Int J FertilSteril82015

      Not checked in the free run.

  • Classified as probably not a substantial claim.

    Findingown data

    Five domains were generated from the data: Signs/Symptoms, Diagnosis, Management, Perceptions, Resources and Improving Outcomes.

    “Five domains were generated from the data: Signs/Symptoms, Diagnosis, Management, Perceptions, Resources and Improving Outcomes.”
    • Also stated in: § 3. Results · plain
      “Thematic analysis identified the following five domains: Signs and Symptoms of PCOS, Diagnosis of PCOS, Management of PCOS, Perceptions, and Resources and Improving Outcomes.”
    Quote in the paperSubstantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Findingcitation

    Those aged 18 to 25 were more likely to identify irregular menstruation as a problem compared to those aged 26-35.

    “Ee et al., found that those aged 18 to 25 were more likely to identify irregular menstruation as a problem compared to those aged 26-35 (27).”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [27] “The whole package deal”: experiences of overweight/obese women living with polycystic ovary syndrome221 EeC SmithC MoranL MacMillanF CostelloM BaylockB BMC Womens Health202020

      Not checked in the free run.

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Findingcitation

    People with PCOS are more likely to suffer from excess weight gain and obesity than those without the condition.

    “A systematic review by Lim et al. (34) found that people with PCOS are more likely to suffer from excess weight gain and obesity than those without the condition.”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [34] Overweight, obesity and central obesity in women with polycystic ovary syndrome: a systematic review and meta-analysis LimSS DaviesMJ NormanRJ MoranLJ Hum Reprod Update182012

      Not checked in the free run.

  • May combine two claims.

    Findingcitation

    Delay in specialist referral and lack of evidence-based tools were reported as a barrier to a timely diagnosis.

    “Tomlinson et al. (6) reported delay in specialist referral and lack of evidence-based tools as a barrier to a timely diagnosis.”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [6] The diagnosis and lived experience of polycystic ovary syndrome: A qualitative study TomlinsonJ PinkneyJ AdamsL StenhouseE BendallA CorriganO J Adv Nurs732017

      Not checked in the free run.

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Findingcitation

    Weight gain and difficulty losing weight were the most troubling health related concerns.

    “Young et al. (35) reported weight gain and difficulty losing weight were the most troubling health related concerns.”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [35] Transition to self-management among adolescents with polycystic ovary syndrome: Parent and adolescent perspectives YoungCC RewL MongeM J PediatrNurs472019

      Not checked in the free run.

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Findingcitation

    Some study participants likened hirsutism to "turning into a boy" and looking "like a man".

    “Some study participants likened this to “turning into a boy” and looking “like a man” (18, 25).”
    Quote in the paperNot a substantial claim0 of 2 sources checked
    • cites [18] “Everything’s from the inside out with PCOS”: Exploring women’s experiences of living with polycystic ovary syndrome and co-morbidities through SkypeTM interviews2055102915603051 WilliamsS SheffieldD KnibbRC Health Psychol Open22015

      Not checked in the free run.

    • cites [25] The benefits and harms of receiving a polycystic ovary syndrome diagnosis: a qualitative study of women’s experienceshoz026 CoppT HerschJ MuscatDM McCafferyKJ DoustJ DokrasA Hum Reprod Open20192019

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  • May combine two claims.

    Findingcitation

    The majority of study participants were dissatisfied with their weight and wanted to lose weight.

    “Douglas et al. (36) found that the majority of study participants were dissatisfied with their weight and wanted to lose weight.”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [36] University students with PCOS demonstrate limited nutrition knowledge DouglasCC JonesR GreenR BrownK YountG WilliamsR American Journal of Health Education522021

      Not checked in the free run.

  • May combine two claims.

    Findingcitation

    The heterogeneity and wide variation in presentation of PCOS was identified as a barrier, with differentiation of PCOS-related features from normal variability in the general population, or other conditions such as hypothyroidism, reported to be difficult for healthcare professionals.

    “Copp et al. identified the heterogeneity and wide variation in presentation of PCOS as a barrier, with differentiation of PCOS-related features from normal variability in the general population, or other conditions such as hypothyroidism, were reported to be difficult for healthcare professionals (39).”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [39] Are expanding disease definitions unnecessarily labelling women with polycystic ovary syndromej3694 CoppT JansenJ DoustJ MolBW DokrasA McCafferyK BMJ3582017

      Not checked in the free run.

  • May combine two claims.

    Findingcitation

    Once referred, adolescents found hospital consultations brief and infrequent, and therefore felt unable to share their concerns with qualified healthcare professionals.

    “Once referred, they found hospital consultations brief and infrequent, and therefore felt unable to share their concerns with qualified healthcare professionals.”
    Quote in the paperSubstantial claim0 of 1 sources checked
    • cites [26] Health-related quality of life among adolescents with polycystic ovary syndrome JonesGL HallJM LashenHL BalenAH LedgerWL J ObstetGynecol Neonatal Nurs402011

      Not checked in the free run.

  • May combine two claims.

    Findingcitation

    Other beneficial outcomes of receiving a diagnosis include: relief of stress; increased understanding of the condition, solidarity with others with PCOS; empowerment to take control of their own care; and motivation to implement change in their lifestyles.

    “Other beneficial outcomes of receiving a diagnosis include: relief of stress; increased understanding of the condition, solidarity with others with PCOS; empowerment to take control of their own care; and motivation to implement change in their lifestyles (18, 43).”
    Quote in the paperNot a substantial claim0 of 2 sources checked
    • cites [18] “Everything’s from the inside out with PCOS”: Exploring women’s experiences of living with polycystic ovary syndrome and co-morbidities through SkypeTM interviews2055102915603051 WilliamsS SheffieldD KnibbRC Health Psychol Open22015

      Not checked in the free run.

    • cites [43] The needs of women and healthcare providers regarding polycystic ovary syndrome information, resources, and education: A systematic search and narrative review Gibson-HelmM TassoneEC TeedeHJ DokrasA GaradR 362018

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  • May combine two claims.

    Findingcitation

    Time since diagnosis varied from 6 months to 27 years (median 6.5 years) and time from first seeking medical attention to receiving diagnosis ranged from 1 week to 8 years.

    “The study by Copp et al. (25) found time since diagnosis varied from 6 months to 27 years (median 6.5 years) and time from first seeking medical attention to receiving diagnosis ranged from 1 week to 8 years.”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [25] The benefits and harms of receiving a polycystic ovary syndrome diagnosis: a qualitative study of women’s experienceshoz026 CoppT HerschJ MuscatDM McCafferyKJ DoustJ DokrasA Hum Reprod Open20192019

      Not checked in the free run.

  • May combine two claims.

    Findingnone given

    Lifestyle changes including exercise and dietary changes were described as most common and often considered first-line.

    “Lifestyle changes including exercise and dietary changes were described as most common and often considered first-line.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Findingcitation

    Dissatisfaction stemmed from perceptions of healthcare professionals lacking adequate knowledge of PCOS, therefore negatively impacting on their ability to provide appropriate information, facilitate positive health-related behaviours, and manage health outcomes.

    “Dissatisfaction stemmed from perceptions of healthcare professionals lacking adequate knowledge of PCOS, therefore negatively impacting on their ability to provide appropriate information, facilitate positive health-related behaviours, and manage health outcomes.”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Findingcitation

    Receiving some, albeit inadequate lifestyle advice regarding weight loss and wanting more appropriate help was a common experience.

    “A study of 68 women with PCOS by Colwell et al. (46) found that receiving some, albeit inadequate lifestyle advice regarding weight loss and wanting more appropriate help was a common experience.”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [46] Women’s perceptions of polycystic ovary syndrome following participation in a clinical research study: implications for knowledge, feelings, and daily health practices ColwellK LujanME LawsonKL PiersonRA ChizenDR J ObstetGynaecol Can322010

      Not checked in the free run.

  • May combine two claims.

    Findingcitation

    The diagnosis took >2 years in 24% of women and 39% saw three or more health professionals before a diagnosis was made.

    “In the study by Gibson-Helm et al. (8), the diagnosis took >2 years in24% of women and 39% saw three or more health professionals before a diagnosis was made.”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [8] Women’s experiences of polycystic ovary syndrome diagnosis Gibson-HelmME LucasIM BoyleJA TeedeaHJ Fam Pract312014

      Not checked in the free run.

  • May combine two claims.

    Findingcitation

    Reasons stated for preference of complementary therapies were side effects associated with traditional interventions, dislike of pharmacological agents, and desperation for treatment due to ineffectiveness of conventional medication.

    “Reasons stated for preference of complementary therapies were side effects associated with traditional interventions, dislike of pharmacological agents and desperation for treatment due to ineffectiveness of conventional medication (22, 27, 44).”
    Quote in the paperNot a substantial claim0 of 3 sources checked
    • cites [22] A qualitative investigation of the impact of peer to peer online support for women living with polycystic ovary syndrome51 HolbreyS CoulsonNS BMC Womens Health132013

      Not checked in the free run.

    • cites [27] “The whole package deal”: experiences of overweight/obese women living with polycystic ovary syndrome221 EeC SmithC MoranL MacMillanF CostelloM BaylockB BMC Womens Health202020

      Not checked in the free run.

    • cites [44] Women’s experiences of diagnosis and management of polycystic ovary syndrome: a mixed-methods study in general practice HillmanSC BryceC CaleyachettyR DaleJ Br J Gen Pract702020

      Not checked in the free run.

  • May combine two claims.

    Findingnone given

    Management of excess hair growth was rarely stated in the literature, with patients usually self-managing through hair removal creams, waxing, and shaving.

    “Management of excess hair growth was rarely stated in the literature, with patients usually self-managing through hair removal creams, waxing, and shaving.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Findingcitation

    Use of oral contraceptives showed a great variation in experiences, with some positive, and others negative.

    “Use of oral contraceptives showed a great variation in experiences, with some positive, and others negative (38, 49).”
    Quote in the paperNot a substantial claim0 of 2 sources checked
    • cites [38] Understanding and supporting women with polycystic ovary syndrome: a qualitative study in an ethnically diverse UK sample HadjiconstantinouM ManiH PatelN LevyM DaviesM KhuntiK Endocr Connect62017

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    • cites [49] The challenges with managing polycystic ovary syndrome: A qualitative study of women’s and clinicians’ experiences CoppT MuscatDM HerschJ McCafferyKJ DoustJ DokrasA Patient Educ Couns1052022

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  • May combine two claims.

    Findingcitation

    Women with PCOS felt poorly informed about the medications prescribed to them and were not receiving communications about potential alternative therapies.

    “Several studies highlighted that women with PCOS felt poorly informed about the medications prescribed to them and were not receiving communications about potential alternative therapies (6, 23, 48).”
    Quote in the paperSubstantial claim0 of 3 sources checked
    • cites [6] The diagnosis and lived experience of polycystic ovary syndrome: A qualitative study TomlinsonJ PinkneyJ AdamsL StenhouseE BendallA CorriganO J Adv Nurs732017

      Not checked in the free run.

    • cites [23] Young women’s experiences living with polycystic ovary syndrome WeissTR BulmerSM J ObstetGynecol Neonatal Nurs402011

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    • cites [48] Social construction of biopsychosocial and medical experiences of women with polycystic ovary syndrome WrightPJ DawsonRM CorbettCF J Adv Nurs762020

      Not checked in the free run.

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Findingcitation

    Oral contraceptives were usually prescribed for the management of menstruation, acne and excess hair growth.

    “They were usually prescribed for the management of menstruation, acne and excess hair growth (4).”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [4] Recommendations from the international evidence-based guideline for the assessment and management of polycystic ovary syndrome TeedeHJ MissoML CostelloMF DokrasA LavenJ MoranL Fertil Steril1102018

      Not checked in the free run.

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Findingcitation

    Women with PCOS are more likely to attempt most weight loss approaches, such as various dietary patterns, exercise, medication, meal replacements, commercial weight loss programs and nonconventional methods.

    “others have found that in fact women with PCOS are more likely to attempt most weight loss approaches, such as “various dietary patterns, exercise, medication, meal replacements, commercial weight loss programs and nonconventional methods” (51, 52).”
    Quote in the paperNot a substantial claim0 of 2 sources checked
    • cites [51] Polycystic ovary syndrome and weight management MoranLJ LombardCB LimS NoakesM TeedeHJ Womens Health (Lond)62010

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    • cites [52] Health literacy needs in weight management of women with polycystic ovary syndrome LimS SmithCA CostelloMF MacMillanF MoranL TeedeH Health Promot J Austr322021

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  • May combine two claims.

    Findingcitation

    Services such as IVF are difficult to access in countries such as India and the USA because they are usually not funded by the government and are expensive to self-fund.

    “Differing health care models mean services such as IVF are difficult to access in countries such as India and the USA, as they are usually not funded by the government and expensive to self-fund (20, 48).”
    Quote in the paperNot a substantial claim0 of 2 sources checked
    • cites [20] Cultural experiences, patterns, and practices of American Indian women with polycystic ovary syndrome: An ethnonursing study CarronR KooiengaS Gilman-KehrerE AlveroR J TranscultNurs312020

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    • cites [48] Social construction of biopsychosocial and medical experiences of women with polycystic ovary syndrome WrightPJ DawsonRM CorbettCF J Adv Nurs762020

      Not checked in the free run.

  • May combine two claims. The quote only partly states this claim.

    Findingcitation

    Fatalistic beliefs cultivated a culture of self-blame and lack of hope, preventing women with PCOS from seeking help from healthcare professionals.

    “This cultivated a culture of self-blame and lack of hope, preventing women from seeking help from healthcare professionals (58, 59).”
    Quote in the paperNot a substantial claim0 of 2 sources checked
    • cites [58]

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    • cites [59]

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  • May combine two claims.

    Findingcitation

    Barriers to following lifestyle advice include lack of time due to familial, personal and career commitments, easy access to processed foods, and prioritising leisure events that disrupt lifestyle patterns.

    “This includes a lack of time due to familial, personal and career commitments, easy access to processed foods and prioritising leisure events which disrupt their lifestyle patterns.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Findingcitation

    Many participants reported loss of motivation after noticing no improvements in weight initially in their weight loss endeavours.

    “Many participants in this study reported loss of motivation after noticing no improvements in weight initially in their weight loss endeavours.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Findingcitation

    Many adolescents with PCOS recognised the importance of being proactive in their own care and associated a positive outlook with decreased stress overall.

    “Young et al. (35) found that many adolescents recognised the importance of being proactive in their own care and associated a positive outlook with decreased stress overall.”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [35] Transition to self-management among adolescents with polycystic ovary syndrome: Parent and adolescent perspectives YoungCC RewL MongeM J PediatrNurs472019

      Not checked in the free run.

  • May combine two claims.

    Findingcitation

    Despite the high prevalence of psychological comorbidities associated with PCOS, many people with PCOS reported adopting a positive outlook, some through exercise such as swimming and others through positive reframing of their mindset.

    “Despite the high prevalence of psychological comorbidities associated with PCOS, many people reported adopting a positive outlook, with some choosing to take on exercise such as swimming, others through “positive reframing” of their mindset (18).”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [18] “Everything’s from the inside out with PCOS”: Exploring women’s experiences of living with polycystic ovary syndrome and co-morbidities through SkypeTM interviews2055102915603051 WilliamsS SheffieldD KnibbRC Health Psychol Open22015

      Not checked in the free run.

  • May combine two claims.

    Findingcitation

    Some healthcare professionals understood and supported the increasing demand for complementary treatments provided they were safe and effective, although many had fears due to their unproven and unverified nature being advertised to the public.

    “Copp et al. (49) reported that some healthcare professionals understood the increasing demand and curiosity of complementary treatments and supported them provided they were safe and effective although many had fears due to their unproven and unverified nature being advertised to the public.”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [49] The challenges with managing polycystic ovary syndrome: A qualitative study of women’s and clinicians’ experiences CoppT MuscatDM HerschJ McCafferyKJ DoustJ DokrasA Patient Educ Couns1052022

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  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Findingcitation

    None of the 15 PCOS-related websites reviewed by Mallappa Saroja and Hanji Chandrashekhar provided complete information on the condition.

    “Mallappa Saroja and Hanji Chandrashekhar (55) reviewed 15 PCOS related websites and concluded that none provided complete information on the condition.”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [55] Polycystic ovaries: review of medical information on the internet for patients Mallappa SarojaCS Hanji ChandrashekarS Arch Gynecol Obstet2812010

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  • Probably not a substantial claim: may not pass S1 (asserted), S3 (load-bearing).

    Findingcitation

    Educational outreach programs producing tribal-specific information would help reduce marginalisation and stigmatisation of women with PCOS within tribes.

    “It was stated for example, that educational outreach programs to produce tribal specific information would help to reduce marginalisation and stigmatisation of women with PCOS within tribes (20).”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [20] Cultural experiences, patterns, and practices of American Indian women with polycystic ovary syndrome: An ethnonursing study CarronR KooiengaS Gilman-KehrerE AlveroR J TranscultNurs312020

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  • May combine two claims.

    Findingcitation

    In a traditional Indian society, menstruation is considered taboo, with women reportedly being told by their mothers to avoid talking about menstrual issues and PCOS to others, particularly male relatives.

    “In a study by Sharma et al. (28), which took place in a traditional Indian society, the process of menstruation is considered taboo, with women reportedly being told by their mothers to avoid talking about menstrual issues and PCOS to others, particularly male relatives.”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [28] Sharma, 2018, Tabooed disease in alienated bodies: A study of women suffering from polycystic ovary syndrome (PCOS), Clin Epidemiol Glob Health source

      Not checked in the free run.

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Findingcitation

    Women with PCOS referred to their symptoms with masculine terminology, such as describing their central adiposity as a man's beer belly.

    “On several occasions, these women referred to their symptoms with masculine terminology, such as describing their central adiposity as a “man’s beer belly”.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Findingown data

    The study reveals a spectrum of experiences and outcomes with both non-pharmacological and pharmacological therapy and reported interest in complementary and alternative therapies for PCOS.

    “While there are limited management options, our study reveals a spectrum of experiences and outcomes with both non-pharmacological and pharmacological therapy and reported interest in complementary and alternative therapies for PCOS.”
    Quote in the paperSubstantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.

    Findingcitation

    Women with PCOS felt that a positive outlook helped sustain personal motivations, which is important in the management of a chronic condition.

    “Furthermore, they felt that a positive outlook helped sustain personal motivations which is important in the management of a chronic condition.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Findingcitation

    Studies reported the need for culturally specific education and treatment, not only for those with PCOS but also for their family and friends who may be unfamiliar with PCOS.

    “Studies reported the need for culturally specific education and treatment, not only for those with PCOS, but also their family and friends who may be unfamiliar with PCOS.”
    Quote in the paperSubstantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Findingcitation

    Symptoms associated with PCOS, particularly irregular menstruation, hirsutism, and obesity, made women with PCOS feel less feminine.

    “Williams et al. (41) reported that symptoms associated with the condition, particularly irregular menstruation, hirsutism, and obesity made women with PCOS feel less feminine.”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [41] A snapshot of the lives of women with polycystic ovary syndrome: A photovoice investigation WilliamsS SheffieldD KnibbRC J Health Psychol212016

      Not checked in the free run.

  • May combine two claims.

    Findingcitation

    Currently, the main sources of information are clinicians, the internet, and books, although the quality of information is inconsistent.

    “Currently, the main sources of information are clinicians, the internet, and books, although quality of information is inconsistent (39).”
    Quote in the paperSubstantial claim0 of 1 sources checked
    • cites [39] Are expanding disease definitions unnecessarily labelling women with polycystic ovary syndromej3694 CoppT JansenJ DoustJ MolBW DokrasA McCafferyK BMJ3582017

      Not checked in the free run.

  • May combine two claims.

    Findingnone given

    There are mixed experiences and perceptions of those living with PCOS, with the balance tipping more towards dissatisfaction.

    “There are mixed experiences and perceptions of those living with PCOS with the balance tipping more towards dissatisfaction.”
    Quote in the paperSubstantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Study design and conductnone given

    The entire process was overseen by senior researchers PK and AL experienced in qualitative research.

    “The entire process was overseen by senior researchers PK and AL experienced in qualitative research.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Study design and conductnone given

    The quality of individual studies was assessed by adaptation to the Critical Appraisal Skills Program (CASP) quality assessment tool.

    “The quality of individual studies was assessed by adaptation to the Critical Appraisal Skills Program (CASP) quality assessment tool.”
    • Also stated in: § 2.2. Search strategies and selection · plain
      “The Critical Appraisal Skills Programmer (CASP) qualitative studies and systematic review checklist were used to appraise the relevance and validity of the full texts identified.”
    Quote in the paperNot a substantial claim

  • Classified as probably not a substantial claim. May combine two claims.

    Study design and conductreasoning

    We decided to blind our colleagues from the objective of the study and requested them to independently code the included articles.

    “Therefore, we decided to blind our colleagues from the objective of the study and requested them to independently code the included articles.”
    Quote in the paperSubstantial claim

  • Classified as probably not a substantial claim. May combine two claims.

    Study design and conductown data

    MT and SI both coded all full-text papers in this study with their codes later merged.

    “MT and SI both coded all full-text papers in this study with their codes later merged, reducing confirmation bias.”
    Quote in the paperSubstantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.

    Study design and conductreasoning

    Stage (i) and (ii) of the analysis was performed by authors SI and MT, who were blind to the title of the review, synchronously and independently.

    “Stage (i) and (ii) of the analysis was performed by authors SI and MT, who were blind to the title of the review, synchronously and independently.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.

    Study design and conductnone given

    Stage (iii) was analysed by author GL and overseen by senior supervisors PK and AL with any disagreements on the findings resolved by discussions between them.

    “Stage (iii) was analysed by author GL and overseen by senior supervisors PK and AL with any disagreements on the findings resolved by discussions between them.”
    Quote in the paperNot a substantial claim

  • Classified as probably not a substantial claim.

    Study design and conductreasoning

    The authors did not include non-scientist people with PCOS as part of their research teams.

    “We also acknowledge we did not include non-scientists people with PCOS as part of our research teams.”
    Quote in the paperSubstantial claim

  • Classified as probably not a substantial claim.

    Interpretationnone given

    Including people with PCOS in the research team may introduce subjectivity and measurement bias if they introduce their personal views while coding the published literature.

    “We felt this may introduce subjectivity and measurement bias if those people with PCOS introduce their personal views while coding the published literature.”
    Quote in the paperSubstantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Study design and conductnone given

    Coding of all included articles by two independent researchers blinded to the objectives of the study bypassed subjective bias.

    “The coding of all included articles by two independent researchers blinded by the objectives of the study bypassed the subjective bias.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Study design and conductnone given

    A further review of the codes by experienced qualitative researchers strengthens the findings of the study.

    “A further review of the codes by experienced qualitative researchers further strengthens the findings of the study.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.

    Interpretationreasoning

    A holistic approach in evaluating women with PCOS can help screen these concerns, but its management may be limited by time limitations during consultations and availability of appropriate expertise.

    “While a holistic approach in evaluating women with PCOS can help screen these concerns, its management may be limited by time limitations during consultations and availability of appropriate expertise.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Premisecitation

    Conferences and seminars have been reported to be beneficial for patients and clinicians as they share current information on PCOS management.

    “Conferences and seminars have been reported to be beneficial for patients and clinicians as they share current information on PCOS management (15).”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [15] Measures of patient dissatisfaction with health care in polycystic ovary syndrome: Retrospective analysis HoyosLR PutraMa ArmstrongAA ChengCY RiestenbergCK SchoolerTA 2020

      Not checked in the free run.

  • Classified as probably not a substantial claim.

    Study design and conductreasoning

    Undergraduate students with none to minimal research background were included in the screening and coding of the systematic review.

    “Instead, we included undergraduate students with none to minimal research background in the screening and coding of the systematic review.”
    Quote in the paperSubstantial claim

  • Probably not a substantial claim: may not pass S2 (checkable). May combine two claims.

    Interpretationreasoning

    Co-creation of resources with people with PCOS can ensure that the language used is easy to understand and addresses the knowledge gaps identified.

    “Co-creation of resources with people with PCOS can ensure that the language used is easy to understand and addresses the knowledge gaps identified.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.

    Study design and conductreasoning

    The students were blinded to the objective of the study at the coding stage, establishing neutrality at the time of data collection and analysis.

    “The students were also blinded to the objective of the study at the coding stage and thus established neutrality at the time of data collection and analysis.”
    Quote in the paperNot a substantial claim
55 of 55

  • The paper relies on this without support.

    Understanding the experiences and concerns of people with PCOS is necessary to provide appropriate support and improve their quality of life.

    “Understanding the experiences and concerns of those with PCOS is necessary to provide appropriate support and improve their quality of life.”

  • The paper relies on this without support.

    Adequate education, information and coping skills are important for people with PCOS to achieve sustainable management in the long term.

    “They are expected to largely self-manage their condition through lifestyle changes and medications and therefore, adequate education, information and coping skills are important to achieve sustainable management in the long term.”
2 of 2

Self-check

Percentages, sums and reported differences re-computed from the paper’s own numbers.

Each contradiction between two passages listed here was confirmed by an independent check.

  • Colwell study participant count differs

    Minor

    The results describe Colwell et al. as a study of 68 women, whereas Table 1 lists 43 women for that study.

  • Seven databases claimed, but six are named

    Minor

    The abstract reports a search of seven databases. The methods name only six: PubMed, Medline, Embase, APA PsychInfo, Web of Science and CENTRAL.

  • Copp study year differs between table and reference

    Minor

    Table 1 dates the Copp qualitative study involving clinicians and women to 2021, while its corresponding reference gives a 2022 publication year.

  • Narrative review included despite review-article exclusion

    Minor

    The methods say review articles were excluded, but Table 1 lists a systematic search and narrative review among the 34 included studies.

4 of 4

Cites

Flagged first, then by citations

Research works printed but not linked: 1

  1. University students with PCOS demonstrate limited nutrition knowledge DouglasCC JonesR GreenR BrownK YountG WilliamsR American Journal of Health Education522021

Cited by

Sorted by citations

Related

Authors
Lau, G. M., Elghobashy, M., Thanki, M., Ibegbulam, S., Latthe, P., Gillett, C. D. T., O’Reilly, M. W., Arlt, W., Lindenmeyer, A., Kempegowda, P., & PCOS SEva Working Group
Affiliations
  • University of Birmingham (GB)
  • National Health Service (GB)
  • Royal College of Surgeons in Ireland (IE)
Corresponding author
Kempegowda, Punith
ORCID
Venue
Frontiers in Endocrinology
Publisher
Frontiers Media SA
Published
2022-12-02
Volume
13
Pages
1064937-1064937
ISSN
1664-2392 (ISSN-L)
DOI
10.3389/fendo.2022.1064937
PMC
PMC9755159
OpenAlex
W4311195206
Semantic Scholar
f4a9170c65be41bed4cb2c875a36e8d6c227063e
Cited by
36
References
54
Citations by year
2026: 9 · 2025: 9 · 2024: 9 · 2023: 9
FWCI
1.13
Type
journal article
Language
en
Open access
Licence
Locations
  • Frontiers in Endocrinology (publishedVersion, cc-by)
  • PubMed Central (publishedVersion, cc-by)
  • PubMed (publishedVersion)
  • University of Birmingham Research Portal (University of Birmingham) (submittedVersion, cc-by)
  • DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
  • Figshare (submittedVersion, cc-by)
  • Lenus, The Irish Health Repository (Dr Steevens Hospital Library) (submittedVersion, cc-by)
Funders
  • Wellcome Trust (WT209492/Z/17/Z, Z/17/Z, Investigator Grant WT209492/Z/17/Z, 20009)
  • Health Research Board
  • University Hospitals Birmingham NHS Foundation Trust (BRC-1215-20009)
  • National Institute for Health and Care Research (BRC-1215-20009)
  • University of Birmingham (BRC‐1215‐20009)
  • Birmingham Biomedical Research Centre (BRC-1215-20009)
Topics
  • Health Sciences › Medicine › Reproductive Medicine › Ovarian function and disorders
  • Health Sciences › Medicine › Reproductive Medicine › Endometriosis Research and Treatment
  • Health Sciences › Medicine › Reproductive Medicine › Reproductive Health and Technologies
Keywords
polycystic ovary syndrome, lived experience, patient perspectives, diagnosis, delayed diagnosis, PCOS management, hirsutism, obesity, menstrual irregularity, femininity, online health resources, holistic care, adolescents
MeSH terms
Adolescent, Adult, Behavior Therapy, Female, Hirsutism, Humans, Menstruation Disturbances, Polycystic Ovary Syndrome

About these checks

Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.

Claims read by deepseek-v4.1-flash under definition version 3 (extract-v3) on 2026-10-09.

Classified by jev-1.13-20260917 (gold-guideline-v0.2) on 2026-10-09.

Statistics and arithmetic are recomputed, not judged.

Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.

What counts as a claim ›How we measure confidence ›How we check this ›

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