- Email: [email protected]
Quality of Life in Adolescents Beginning Depot Leuprolide for Treatment of Endometriosis
NASPAG 28th Annual Clinical Research Meeting, Issues and Answers in Pediatric and Adolescent Gynecology, April 24-26, 2014, Philadelphia, PA Poster Abstracts 1. The Impact of Menstrual Issues in Young Women With Angelman Syndrome Alexa Kaskowitz MD, MPH*, Melina Dendrinos MD, Pamela J. Murray MD, MPH, Lies Quint MD, Susan Ernst MD* Research conducted at University of Michigan, Ann Arbor, MI
Background: Angelman Syndrome is a neurogenetic disorder affecting 1/ 12,000 e 20,000 of the population, characterized by developmental delay, speech and motor impairment and epilepsy. They have normal pubertal development and fertility, but little is known regarding menstrual issues. The purpose of this study is to characterize menstrual health issues and their impact in young women with Angelman Syndrome (AS). Methods: An IRB-approved web-based survey, used previously in a study on teens with autism, was emailed to the membership of the Angelman Syndrome Foundation. Data was collected on demographics, menstrual history, menstrual hygiene, associated symptoms, impact on daily life, previous treatments and seizure history. Statistical analysis was done using descriptive statistics and chi-squared comparisons (IBM SPSS, Version 21). Results: Email invitations for the survey were sent to 256 families and 78 surveys (30%) were returned. The average age was 18 years (12-25 yrs), with the majority (79%) being non-verbal and epileptic (81%). Of the 49% of parents who knew their daughter’s level of cognition, 77% were severely or profoundly cognitively impaired. The average age of reported menarche is 12.4 years (8-17 yrs). Their periods were of average duration (3-7 days, 76%) and flow (88% not heavy). Most (84%) families reported at least one symptom (e.g. pain, bloating) during menses and 68% were severe. These symptoms caused 9% to often have problems at home and 7% to often miss school. Most (98%) reported at least one premenstrual symptom, with w 20% rating those severe and causing problems at home, however only 7% missed school frequently. Menstrual hygiene issues often caused problems at home in 5.1%. Menstrual hygiene issues prevented school attendance often in 3.8% of girls. Forty percent of girls use hormones to control their menstrual flow and 75% of those used it continuously. The vast majority (88%) of caregivers were satisfied with their method to control periods. Two girls (2.5%) had undergone surgical procedures to stop menstruation, with uncontrollable menses. The majority of our study population (81%) had seizures. Of the girls who had seizures, 58% had no change in their seizures with menstruation and 38% noted increase in frequency. The girls who used medications to control cyclical seizures were split between using increased doses of seizure medications (57%) or using hormones (43%). Girls with seizures were more likely to use hormonal methods to control menses than those without seizures (p¼0.017). Conclusion: Menstruation in girls with Angelman Syndrome is in the normal range in terms of onset of menarche and duration. There are only a few for whom menstrual hygiene, PMS or menstrual symptoms cause frequent problems at home or substantially negatively impact school attendance. Hormone use is therefore modest in this population with moderate to severe disabilities. Seizure activity with menses did not change in over half of respondents. More than half of young women and their families are coping with menstrual issues without intervention.
2. Quality of Life in Adolescents Beginning Depot Leuprolide for Treatment of Endometriosis Amy D. DiVasta MD, MMSc 1, Jenny Sadler BA 1, Stacey A. Missmer ScD*2 1083-3188/$ - see front matter Ó 2014 Published by Elsevier Inc. http://dx.doi.org/10.1016/j.jpag.2014.01.024
1
Adolescent Medicine and Gynecology, Children’s Hospital Boston, Boston, MA, United States 2 Obstetrics, Gynecology, and Reproductive Biology, Brigham and Women’s Hospital, Boston, MA, United States
Background: When first-line therapies fail, many patients with endometriosis and chronic pelvic pain will be offered treatment with a gonadotropin-releasing hormone agonist (GnRHa). Little is known regarding use of GnRHa during adolescence. Objective: The objective of the current study was to describe a cohort of teens who were referred for treatment with a GnRHa, including the effect of pre-GnRHa treatment options. Design/Methods: Teens with a surgically confirmed diagnosis of endometriosis were recruited for participation in a randomized trial. Prior to beginning treatment with the GnRHa, study participants (n¼49, age 17.8 1.5 y) completed several psychological measures, including the Short Form Health Survey v2 (SF-36), Menopausal Rating Scale (MRS), and Beck Depression Inventory-II (BDI). Chi square analyses were used to study categorical variables. Analysis of variance with Scheffe’s method for multiple comparisons was used to examine differences in outcomes between treatment groups. SF-36 scores were compared to published normative data using one-sample t-tests. Results: At the time of their diagnostic laparoscopy, 62% of subjects had Stage I endometriosis, while 38% had Stage II disease. Prior to starting the GnRHa, 51% (23/49) of subjects were treated with a combined estrogenprogestin, 44% with norethindrone acetate, 4% received depot medroxyprogesterone acetate (DMPA), and 4% no hormonal therapy. Subjects were mildly depressed on average (BDI score 9.9 7.5); scores did not differ between groups. MRS scores were higher in subjects treated with DMPA than the other two groups (MRS 24.5 v. 8.0, p<0.05). Scores in almost all SF-36 domains (general health, vitality, physical functioning, role limitations due to physical health, pain, mental health) were lower in teens with endometriosis than published norms (all p<0.05). There were no group differences in SF-36 scores. There was no correlation between stage of disease and impairment of functioning, menopausal symptoms, or level of self-reported psychological distress (r<0.2; p>0.05). Conclusions: In conclusion, adolescents with endometriosis suffer from significant impairments of physical and emotional health even when undergoing treatment for their disease. In accordance with adult studies, the stage of disease did not correlate with the extent of self-reported mental or physical health. Given this degree of impairment, early and aggressive treatment should be sought for young women with endometriosis.
3. Ovarian Myxoma Mimicking Mucinous Cystadenocarcinoma in a Prepubertal Girl Amy Vallerie MD, Lesli LeCompte MD, Oliver Muenster MD*, Monique Regard MD New York Medical College, Maria Fareri Children’s Hospital, Valhalla, NY
Background: Ovarian myxoma is a benign, hormonally inactive ovarian stromal tumor typically reported in reproductive aged women. While histologically similar to fibroma-thecomas, myxomas demonstrate unique oval to stellate cells with bland unclear nuclear features and rare mitotic activity. These tumors may be pure myxoma or associated with other sexcord stromal tumors. Given the rarity of these tumors, the radiographic features of ovarian myxoma are not well described. There are two reports of early adolescent
Background: Angelman Syndrome is a neurogenetic disorder affecting 1/ 12,000 e 20,000 of the population, characterized by developmental delay, speech and motor impairment and epilepsy. They have normal pubertal development and fertility, but little is known regarding menstrual issues. The purpose of this study is to characterize menstrual health issues and their impact in young women with Angelman Syndrome (AS). Methods: An IRB-approved web-based survey, used previously in a study on teens with autism, was emailed to the membership of the Angelman Syndrome Foundation. Data was collected on demographics, menstrual history, menstrual hygiene, associated symptoms, impact on daily life, previous treatments and seizure history. Statistical analysis was done using descriptive statistics and chi-squared comparisons (IBM SPSS, Version 21). Results: Email invitations for the survey were sent to 256 families and 78 surveys (30%) were returned. The average age was 18 years (12-25 yrs), with the majority (79%) being non-verbal and epileptic (81%). Of the 49% of parents who knew their daughter’s level of cognition, 77% were severely or profoundly cognitively impaired. The average age of reported menarche is 12.4 years (8-17 yrs). Their periods were of average duration (3-7 days, 76%) and flow (88% not heavy). Most (84%) families reported at least one symptom (e.g. pain, bloating) during menses and 68% were severe. These symptoms caused 9% to often have problems at home and 7% to often miss school. Most (98%) reported at least one premenstrual symptom, with w 20% rating those severe and causing problems at home, however only 7% missed school frequently. Menstrual hygiene issues often caused problems at home in 5.1%. Menstrual hygiene issues prevented school attendance often in 3.8% of girls. Forty percent of girls use hormones to control their menstrual flow and 75% of those used it continuously. The vast majority (88%) of caregivers were satisfied with their method to control periods. Two girls (2.5%) had undergone surgical procedures to stop menstruation, with uncontrollable menses. The majority of our study population (81%) had seizures. Of the girls who had seizures, 58% had no change in their seizures with menstruation and 38% noted increase in frequency. The girls who used medications to control cyclical seizures were split between using increased doses of seizure medications (57%) or using hormones (43%). Girls with seizures were more likely to use hormonal methods to control menses than those without seizures (p¼0.017). Conclusion: Menstruation in girls with Angelman Syndrome is in the normal range in terms of onset of menarche and duration. There are only a few for whom menstrual hygiene, PMS or menstrual symptoms cause frequent problems at home or substantially negatively impact school attendance. Hormone use is therefore modest in this population with moderate to severe disabilities. Seizure activity with menses did not change in over half of respondents. More than half of young women and their families are coping with menstrual issues without intervention.
2. Quality of Life in Adolescents Beginning Depot Leuprolide for Treatment of Endometriosis Amy D. DiVasta MD, MMSc 1, Jenny Sadler BA 1, Stacey A. Missmer ScD*2 1083-3188/$ - see front matter Ó 2014 Published by Elsevier Inc. http://dx.doi.org/10.1016/j.jpag.2014.01.024
1
Adolescent Medicine and Gynecology, Children’s Hospital Boston, Boston, MA, United States 2 Obstetrics, Gynecology, and Reproductive Biology, Brigham and Women’s Hospital, Boston, MA, United States
Background: When first-line therapies fail, many patients with endometriosis and chronic pelvic pain will be offered treatment with a gonadotropin-releasing hormone agonist (GnRHa). Little is known regarding use of GnRHa during adolescence. Objective: The objective of the current study was to describe a cohort of teens who were referred for treatment with a GnRHa, including the effect of pre-GnRHa treatment options. Design/Methods: Teens with a surgically confirmed diagnosis of endometriosis were recruited for participation in a randomized trial. Prior to beginning treatment with the GnRHa, study participants (n¼49, age 17.8 1.5 y) completed several psychological measures, including the Short Form Health Survey v2 (SF-36), Menopausal Rating Scale (MRS), and Beck Depression Inventory-II (BDI). Chi square analyses were used to study categorical variables. Analysis of variance with Scheffe’s method for multiple comparisons was used to examine differences in outcomes between treatment groups. SF-36 scores were compared to published normative data using one-sample t-tests. Results: At the time of their diagnostic laparoscopy, 62% of subjects had Stage I endometriosis, while 38% had Stage II disease. Prior to starting the GnRHa, 51% (23/49) of subjects were treated with a combined estrogenprogestin, 44% with norethindrone acetate, 4% received depot medroxyprogesterone acetate (DMPA), and 4% no hormonal therapy. Subjects were mildly depressed on average (BDI score 9.9 7.5); scores did not differ between groups. MRS scores were higher in subjects treated with DMPA than the other two groups (MRS 24.5 v. 8.0, p<0.05). Scores in almost all SF-36 domains (general health, vitality, physical functioning, role limitations due to physical health, pain, mental health) were lower in teens with endometriosis than published norms (all p<0.05). There were no group differences in SF-36 scores. There was no correlation between stage of disease and impairment of functioning, menopausal symptoms, or level of self-reported psychological distress (r<0.2; p>0.05). Conclusions: In conclusion, adolescents with endometriosis suffer from significant impairments of physical and emotional health even when undergoing treatment for their disease. In accordance with adult studies, the stage of disease did not correlate with the extent of self-reported mental or physical health. Given this degree of impairment, early and aggressive treatment should be sought for young women with endometriosis.
3. Ovarian Myxoma Mimicking Mucinous Cystadenocarcinoma in a Prepubertal Girl Amy Vallerie MD, Lesli LeCompte MD, Oliver Muenster MD*, Monique Regard MD New York Medical College, Maria Fareri Children’s Hospital, Valhalla, NY
Background: Ovarian myxoma is a benign, hormonally inactive ovarian stromal tumor typically reported in reproductive aged women. While histologically similar to fibroma-thecomas, myxomas demonstrate unique oval to stellate cells with bland unclear nuclear features and rare mitotic activity. These tumors may be pure myxoma or associated with other sexcord stromal tumors. Given the rarity of these tumors, the radiographic features of ovarian myxoma are not well described. There are two reports of early adolescent