Comparing dysmenorrhea beliefs and self-management techniques across symptom-based phenotypes.

Participants mean age was 34.1 (SD = 6.6). For race, most participants identified themselves as Caucasian/White (75.6%), with the remaining participants self-identified as: African American/Black (14.2%), Asian or Pacific Islander (5.9%), Native American (2.0%), other (0.7%), or declined to answer (1.6%). For ethnicity, 10.2% of participants reported as Hispanic or Latino. Most participants were categorized in the severe local pain phenotype (54.1%), with the remainder categorized as mild localized pain phenotype (26.5%) or multiple severe symptom phenotype (19.4%). A plurality of participants attended some college or had an associate’s degree (43.0%), with the remaining participants having a high school or less level of education (18.0%) or a bachelor’s degree or higher (39.0%). The majority of the participants grew up in the United States (96.1%) and had health insurance (85.6%). A portion of the participants (18.0%) reported one or more comorbid gynecological conditions (i.e., uterine fibroids, pelvic inflammatory disease, endometriosis, or ovarian cysts). A majority of the participants (69.7%) reported having an additional chronic pain condition, with back pain (46.9%) being the most common one. Further demographic and clinical characteristics of the sample were reported in Chen et al. (2018) . Table 1 shows the results of ANOVA and post hoc Tukey’s HSD tests comparing beliefs about dysmenorrhea across phenotypes. Based on the ANOVA test, there were significant differences in beliefs about dysmenorrhea across symptom-based phenotypes of dysmenorrhea (all p values <.01). Based on Tukey’s HSD tests, the three groups were significantly different in their beliefs about the consequences of dysmenorrhea, timeline, personal and treatment control, severity, normalcy, emotional responses, and CAM (all p values < .05). The only belief that did not differ significantly among the three phenotypes was that medication was harmful or overused (p = 0.43). For pair-wise comparisons, women who experienced multiple severe symptoms reported significantly more negative beliefs about their dysmenorrhea than the other two phenotypes. Women in the multiple severe symptom phenotype were more likely to have more negative beliefs of the consequences of dysmenorrhea, believe their dysmenorrhea will last until menopause, believe their dysmenorrhea is more severe, experience more negative emotional responses from their dysmenorrhea, and had generally more positive beliefs of CAM (all p values < .01). Interestingly, women who experienced multiple severe symptoms did not differ from women who experienced severe localized pain on their beliefs of personal and treatment control, but did differ from those with mild localized pain. Women in the severe localized pain phenotype were more likely than women in the mild localized pain phenotype to have negative beliefs of the consequences of dysmenorrhea, believed their dysmenorrhea will last until menopause, believed their dysmenorrhea was more severe, experienced more negative emotional responses from their dysmenorrhea, and believed they have more personal and treatment control over their dysmenorrhea symptoms. Interestingly, women who experienced severe localized pain did not have significantly different beliefs on CAM than women with mild localized pain. ANOVA and post hoc Tukey’s HSD results for self-management techniques are presented in Table 2 . There were significant differences across phenotypes in terms of the numbers of self-management techniques women used (all p values < .01). Women who experienced multiple severe symptoms reported using significantly more types of medication, CAM techniques, and non-medication approaches than women with severe localized pain or mild localized pain. Women who experienced severe localized pain reported using significantly more medication techniques, CAM techniques, and non-medication approaches than women with mild localized pain.

This was a secondary analysis of a cross-sectional descriptive study ( Chen, Kwekkeboom, & Ward, 2016 ; Chen et al., 2018 ). Chen, Kwekkeboom, and Ward (2016) focused their research on the association between beliefs and self-management strategies, finding that specific beliefs were associated with utilization of different self-management techniques. Using web-based questionnaires, data from 762 women with dysmenorrhea in the United States were collected. Reporting followed the STrengthening the Reporting of Observational Studies in Epidemiology ( STROBE ; Supplementary File 1 ; von Elm, et al., 2007 ). The calculation of study sample size was described in detail previously ( Chen, Kwekkeboom, & Ward, 2016 ). A total of 1,384 women expressed interest in participating in the survey, with 977 women meeting all four eligibility criteria. Eligibility criteria included: (1) at least 18 years old, (2) living in the United States, (3) able to read and write in English, and (4) self-identified as having had dysmenorrhea symptoms in the last 6 months. Of the 977 women invited to complete the survey, 762 (78.0%) completed the survey with valid results (i.e., passed the validity questions, took adequate time responding to the survey (more than 4.6 minutes), and did not choose the same response for each item). Further details on participant inclusion are available in primary analysis of the data set ( Chen, Kwekkeboom, & Ward, 2016 ). The Institutional Review Board at the University of Wisconsin-Madison approved this study in 2014. Data were collected from January to February 2015. Participants were recruited through online survey panels (Qualtrics, UT). Demographic data on file with the survey provider was used to identify potentially eligible women. Panel providers emailed invitations to participate in the study, and women interested in participating were then directed to the online survey ( Chen, Kwekkeboom, & Ward, 2016 ). The survey was anonymous. A statement explaining consent appeared as the first page of the survey. Participants were screened for experiencing dysmenorrhea symptoms in the last 6 months before continuing on to the rest of the survey ( Chen, Kwekkeboom, & Ward, 2016 ; Chen et al., 2018 ). We collected data on dysmenorrhea symptoms, self-management behaviors, and demographic and clinical characteristics. As described in Chen and colleagues (2016) , all measures had been tested previously. Participants rated the severity of 14 dysmenorrhea related symptoms on a 0 (“not present”) to 10 (“extremely present”) scale. Each severity rating was grouped into one of four severity categories based on established cut points: no symptoms (0), mild symptoms (1–4), moderate symptoms (5–6), and severe symptoms (7–10; Chen et al., 2018 ). A latent class analysis was conducted using the symptom severity categories. Three symptom-based phenotypes were identified: 1) “mild localized pain” phenotype, 2) “severe localized pain” phenotype, and 3) “multiple severe symptoms” phenotype. Individual participants were grouped into one of the three dysmenorrhea symptom-based phenotypes ( Chen et al., 2018 ). Beliefs about dysmenorrhea were measured using the Brief Illness Perception Questionnaire (Brief IPQ; Broadbent, Petrie, Main, & Weinman, 2006 ), the Beliefs about Medicines Questionnaire (BMQ; Horne, Weinman, & Hankins, 1999 ), and the Complementary and Alternative Medicine Beliefs Inventory (CAMBI; Bishop, Yardley, & Lewith, 2005 ). Each of these measures has acceptable reliability and validity (test-retest reliability ranging from 0.55–0.70, Cronbach’s alpha ranging from 0.78–0.85; Bishop et al., 2005 ; Broadbent et al., 2006 ; Horne et al., 1999 ). Some items were tailored to dysmenorrhea. Beliefs about the consequences of dysmenorrhea were measured through a single Brief-IPQ item (Broadbent, et al., 2016). Participants rated how much their dysmenorrhea symptoms affect their lives on an 11-point scale from 0 (no effect at all) to 10 (severely affects my life). Higher scores indicate stronger beliefs about negative consequences of dysmenorrhea. Beliefs about how long dysmenorrhea symptoms would last were measured through an altered Brief-IPQ timeline item (Broadbent, et al., 2016). Participants rated how long they believed their dysmenorrhea symptoms would last, with the 10-point anchor representing “until menopause.” Higher scores indicate beliefs that dysmenorrhea will last longer. Beliefs about personal control over dysmenorrhea symptoms were measured through a single Brief-IPQ item (Broadbent, et al., 2016). Participants rated how much control they had over their dysmenorrhea symptoms from 0 (absolutely no control) to 10 (extreme amount of control). Higher scores indicate beliefs of greater personal control. Beliefs about treatment control over dysmenorrhea symptoms were measured through a single Brief-IPQ item (Broadbent, et al., 2016). Participants rated how much they thought the strategies they used could help their dysmenorrhea symptoms from 0 (not at all) to 10 (completely). Higher scores indicate beliefs of greater treatment control. Beliefs about the severity of the dysmenorrhea symptoms were measured through a single Brief-IPQ item (Broadbent, et al., 2016). Participants rated how severe they felt their symptoms were from 0 (not severe at all) to 10 (extremely severe). Higher scores indicate beliefs of greater symptom severity. Beliefs about the normalcy of dysmenorrhea symptoms were measured through two items designed for this study. Participants rated how normal they felt dysmenorrhea symptoms were to menstrual cycles and to being a woman from 1 (strongly disagree) to 5 (strongly agree). Higher scores indicate greater beliefs of dysmenorrhea being normal. Beliefs on how strong of an effect dysmenorrhea symptoms have on emotions were measured using a single item designed for this study. Participants rated how much dysmenorrhea symptoms negatively affected them emotionally from 0 (not at all affected emotionally) to 10 (extremely affected emotionally). Higher scores indicate greater emotional effect. Self-management techniques for dysmenorrhea were measured by asking if participant had utilized a particular self-management technique. Participants were then asked to identify the different techniques they used in self-management for their dysmenorrhea symptoms. Specific self-management techniques were grouped into: 1) medication; 2) CAM approaches; or 3) other non-medication approaches. Types of medications included prescription, or over-the-counter pain medications, hormonal contraceptives, or gastrointestinal medications. Total types of medications used ranged from 0 to 4. Types of CAM approaches included using dietary supplements, relaxation techniques, yoga, a special diet, massage from massage therapist, acupressure, or nerve stimulation. Total types of CAM approaches ranged from 0 to 7. Other non-medication approaches included rest, self-massage, heat, or distraction. Total types of non-medication approach ranged from 0 to 4. Participants’ demographic information was collected including age, race, ethnicity, education level, insurance status, and whether one was raised in the US. Data on clinical characteristics were collected including comorbid gynecological conditions and chronic pain conditions. Data were analyzed with the IBM SPSS Statistics version 25.0 (SPSS; IBM Corp, Armonk, NY). Descriptive statistics were used to characterize demographic and clinical characteristics in the present sample. One-way analyses of variance (ANOVAs) and Tukey’s Honestly Significant Difference (HSD) tests for pair-wise comparisons were conducted to examine the differences in beliefs of dysmenorrhea and self-management techniques for dysmenorrhea between the dysmenorrhea symptom-based phenotypes. Data were assessed for assumptions of ANOVA (i.e., independence of cases, normality, and homogeneity) and all assumptions were met. In the parent study ( Chen, Kwekkeboom, & Ward, 2016 ), data were missing completely at random (MCAR) so multiple imputations using expectation maximum algorithms were utilized. ( Little, 1988 ). Observed values from beliefs variables were used for imputation.

This study further characterized dysmenorrhea symptom-based phenotypes by examining the differences in beliefs about dysmenorrhea and self-management techniques across phenotypes. The findings of this study add to the literature in several ways. This study shows that the women in the different symptom-based phenotypes of dysmenorrhea differed in beliefs regarding dysmenorrhea and self-management techniques. Women in the multiple severe symptoms phenotype had more negative beliefs regarding their dysmenorrhea and used more self-management techniques than women in the mild localized pain and severe localized pain phenotypes. However, the differences were not the same across all groups. Women in the severe localized pain phenotype differed from women in the mild localized pain phenotype on beliefs of control (both personal and treatment) but did not differ on this from women in the multiple severe symptom phenotype. Additionally, women in the severe localized pain phenotype differed on beliefs on CAM from women in the multiple severe pain phenotype but did not differ on this from women in the mild localized pain phenotype. These results indicate that women with severe symptoms whether localized or multiple symptoms share more negative beliefs than women who experience mild symptoms. These results are consistent with prior research showing that women who report severe menstrual pain report more negative beliefs (i.e., seriousness, severity, and impact) regarding their dysmenorrhea ( Chang & Chuang, 2012 ) and engage in more self-management techniques for their menstrual pain, such as taking medication ( Ameade et al., 2018 ) and non-medical coping (i.e., complementary health and non-medication strategies; Chang & Chuang, 2012 ; Walsh, LeBlanc, & McGrath, 2003 ). However, the current study is new by focusing on dysmenorrhea symptom-based phenotypes rather than menstrual pain alone. In addition, this study utilized a large sample, within in different socio-cultural context than previous studies, and focused on different belief dimensions. Previous studies focused specifically on negative beliefs (i.e., seriousness, severity, and impact), while this study focused on belief dimensions including: timeline, control, normalcy, and emotional response. Women in the multiple severe symptoms phenotype held more negative beliefs regarding their dysmenorrhea and engaged in more self-management techniques, possibly due to their experience with their symptoms. On average women in this study have experienced dysmenorrhea for 20 years. Prolonged experience of menstrual pain may have given rise to more negative beliefs and provided women with opportunities to try more self-management techniques with the hope to alleviate their pain. It is likely that those with severe multiple symptoms have greater needs for effective treatments. Similar to women who experience severe fibromyalgia pain, women who experience severe menstrual pain may have a more negative emotional response to their pain and may associate non-dysmenorrhea symptoms to their dysmenorrhea as the experience persists ( Stuifbergen et al., 2006 ). Thus, further understanding of the differences between the phenotypes in regard to beliefs and self-management techniques can further personalize the treatments. There are limitations to this study worth noting. First, responses were collected through self-report measures. Self-report measures, specifically those that require retrospective recall, may be affected by recall bias ( Rosenman, Tennekoon, & Hill, 2011 ). As many of the measures involve recalling previous experiences with menstruation and pain, it is possible that recall bias influenced the severity of symptoms and number of techniques that they reported. Second, we did not use probability sampling in this study, thus there could be self-selection bias of the sample. All participants in this study were Internet users and over the age of 18. Hence, the results of this study may not generalize to others who experience dysmenorrhea, including teenagers and women without access to the Internet (i.e., women of lower socioeconomic status). Third, the study used a cross-sectional design, which prevents us from making conclusions about causality. In relation to the beliefs that women hold regarding their dysmenorrhea, beliefs regarding dysmenorrhea may not only be influenced by the symptom phenotype, but also may influence the symptom severity, which is a key factor in the symptom phenotype classification. There may also be a third variable in the relationship between dysmenorrhea symptom-based phenotype and beliefs and self-management techniques. Finally, the study included women with comorbid gynecological and/or pain conditions, but we did not control for comorbidities in the analyses. These comorbidities may have influenced the severity of symptoms and the beliefs these women had and the self-management techniques they used. In conclusion, there are significant differences in the beliefs regarding symptoms and self-management techniques across dysmenorrhea symptom-based phenotypes. Women in the multiple severe symptoms phenotype have more negative beliefs regarding their dysmenorrhea and use more self-management techniques to alleviate symptoms. Results of this study help further characterize symptom-based phenotypes of dysmenorrhea and have implications for differentiating treatment based on phenotype. Results of this study have clinical implications for developing and tailoring treatments based on dysmenorrhea phenotype. First, as dysmenorrhea beliefs and symptom experiences were associated, interventions focused on reframing negative beliefs regarding dysmenorrhea may reduce symptom severity or the impact of dysmenorrhea. Research has shown that in other chronic pain conditions, negative thoughts and beliefs are directly associated with the perception of pain ( Lawrence, Hoeft, Sheau, & Mackey, 2011 ). Second, it is important to educate women regarding evidence-based dysmenorrhea treatments, particularly for women who have a heavy dysmenorrhea symptom burden. Women experiencing more severe symptoms tried significantly more self-management techniques. Many of the self-management techniques they used might not be evidence-based ( Chen et al., 2018 ) and did not alleviate the symptoms they experienced. . Third, it is important for nurses and nurse practitioners to assess individuals’ previous experiences with dysmenorrhea treatments in order to understand what women want in their treatment. In a large study of chronic pain treatments, Cormier and colleagues (2016) found that expectations of treatment and impressions of the changes had significant relationships with the impact that treatments had on pain intensity, interference, and satisfaction with treatment. These results are relevant to the field of clinical nursing, as women with dysmenorrhea seek treatments and advice from nurses. By assessing not only the severity of dysmenorrhea, but also the beliefs women hold and their previous experiences with self-management techniques, nurses can guide women toward more evidence-based treatments and improve treatment satisfaction. Further research examining the reasons women engage in multiple self-management techniques could clarify why women in the multiple severe symptom phenotype differ from women in mild and severe localized pain phenotypes in their use of self-management strategies. There is also a need to develop new and effective dysmenorrhea treatments, specifically for women in the multiple severe symptom phenotype who may not respond to the available treatments.

Dysmenorrhea affects between 50–90% of women of reproductive age ( Ameade, Amalba, & Mohammed, 2018 ; Chang & Chuang, 2012 ; Kho & Shields, 2020 ). It is often experienced as recurrent menstrual cramping pain in the pelvic area. Some women with dysmenorrhea also experience pain radiating to the lower back and upper legs or gastrointestinal (GI) symptoms ( International Association for the Study of Pain, 2011 ; Kho & Shields, 2020 ). About half of women experiencing dysmenorrhea report the pain as moderate to severe ( Ameade et al., 2018 ; Chang & Chuang, 2012 ; Kho & Shields, 2020 ). Dysmenorrhea is relevant to clinical nursing as women seek treatment and advice on dysmenorrhea from nurses (e.g., school nurses, nurse practitioners; Banikarim, Chacko, & Kelder, 2000 ). In addition, nurses can contribute to educating the public on dysmenorrhea management. Individual women differ in their dysmenorrhea symptoms experiences, and symptom-based dysmenorrhea phenotypes were previously identified ( Chen, et al., 2018 ). Though half of women with dysmenorrhea report menstrual pain as moderate to severe ( Ameade et al., 2018 ; Chang & Chuang, 2012 ; Kho & Shields, 2020 ), women vary in the severity and location of dysmenorrhea pain and existence of GI and other symptoms. The pain that women experience related to their dysmenorrhea varies, yet until recently it was unclear if there were distinct groups of symptom experiences. Chen and colleagues (2018) identified three symptom-based dysmenorrhea phenotypes: 1) mild localized pain phenotype; 2) severe localized pain phenotype; and 3) multiple severe symptoms phenotype. Further characterization of dysmenorrhea symptom-based phenotypes is needed to understand the differences between the phenotypes and the experiences that women have with dysmenorrhea. As with other health conditions, women commonly have beliefs (also called representations ) about dysmenorrhea ( Adrián-Arrieta, & Casas-Fernández de Tejerina, 2018 ; Meulenkamp, Rijken, Cardol, Francke, & Rademakers, 2019 ; Stuifbergen, Phillips, Voelmeck, & Growder, 2006 ). It is unknown how the beliefs women hold regarding their dysmenorrhea differ for women in different symptom-based phenotypes. Previous research has found that common health beliefs include: consequences, timeline, controllability (both personal and treatment), severity, and cause ( Chen, Kwekkeboom, & Ward, 2016 ). In addition, emotional responses to a health condition and attitudes toward medication and complementary alternative medicine (CAM) can also influence perceptions and experiences ( Adrián-Arrieta, & Casas-Fernández de Tejerina, 2018 ). On average, women believe that their dysmenorrhea symptoms are moderately severe, dysmenorrhea moderately affects their lives, they will continue to experience dysmenorrhea until they go through menopause, they have a moderate amount of both personal and treatment control over their symptoms, and they are moderately affected emotionally ( Chen, Kwekkeboom, & Ward, 2016 ). However, individual differences exist in women’s beliefs about dysmenorrhea. In other health conditions, beliefs about a health condition can be influenced by individuals’ perceptions and experiences with the symptoms ( Leventhal, et al., 2012 ; Leventhal & Steele, 1984 ). It is still unclear if women’s beliefs about dysmenorrhea differ across dysmenorrhea symptom-based phenotypes. Women use different self-management techniques to manage dysmenorrhea symptoms. Prior research found that women’s beliefs regarding their dysmenorrhea are associated with what self-management techniques are used ( Chen, Kwekkeboom, & Ward, 2016 ), and women with more severe dysmenorrhea typically engage in more self-management techniques ( Ameade, Abalba, & Mohammed, 2018 ). The majority of women report using medication approaches, specifically nonsteroidal anti-inflammatory drugs (NSAIDs), to help manage their menstrual pain ( Ameade, Abalba, & Mohammed, 2018 ; Kaur, Sheoran, & Sarin, 2015 ). In a study of German women with dysmenorrhea, the majority of women reported using medication approaches to manage their dysmenorrhea, and roughly three-quarters of the women used CAM to manage their symptoms ( Münstedt & Riepen, 2019 ). Though NSAIDs are a commonly utilized self-management technique for dysmenorrhea symptoms, not all women experience relief from this technique. Instead, they utilize other non-pharmacological self-management techniques (i.e., yoga, heat, and acupressure; Armour, Smith, Steel, & Macmillan, 2019 ). It is unknown if women in different dysmenorrhea symptom-based phenotypes differ in their use of self-management techniques. Although research has characterized the beliefs and self-management techniques related to dysmenorrhea, the relationship between symptom-based phenotypes and women’s beliefs and self-management techniques has not been established. It is important to understand the relationships among symptom-based phenotypes, beliefs, and self-management techniques in order to use symptom-based phenotypes to tailor treatment options to better fit the unique needs of women experiencing dysmenorrhea. This study had two aims: (1) compare beliefs about dysmenorrhea across symptom-based phenotypes and (2) compare self-management techniques across dysmenorrhea symptom-based phenotypes. We hypothesized that women with multiple severe symptoms would have more negative beliefs regarding their dysmenorrhea and would try more self-management techniques to alleviate symptom discomfort than women with either severe localized pain or mild localized pain. In addition, we hypothesized that women with severe localized pain would have more negative beliefs regarding their dysmenorrhea and would try more self-management techniques to alleviate symptom discomfort than women with mild localized pain.