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1.
JAMA Netw Open ; 3(5): e204954, 2020 05 01.
Article in English | MEDLINE | ID: mdl-32412636

ABSTRACT

Importance: Black women with endometrial cancer have a 90% higher mortality rate than white women with endometrial cancer. The advanced disease stage at which black women receive a diagnosis of endometrial cancer is a major factor in this disparity and is not explained by differences in health care access. Objective: To describe the prediagnostic experiences of symptoms and symptom disclosure among black women with endometrial cancer. Design, Setting, and Participants: This community-engaged qualitative study developed an interview guide to collect data during semistructured interviews among a sample of 15 black women with endometrial cancer in the United States. Interviews were conducted in person or via a secure conferencing platform. An exploratory and descriptive content analysis was performed using iterative rounds of inductive coding, case summaries, and coanalysis with community input to identify emergent themes. Data were collected from October 3, 2017, to April 15, 2019, and the descriptive content analysis was performed from October 11, 2017, to May 6, 2019. Main Outcomes and Measures: Beliefs, interpretations, and experiences of black women with endometrial cancer from symptom onset to diagnostic confirmation of cancer. Results: Participants included 15 women who self-identified as black or African American and ranged in age from 31 to 72 years. Eight participants lived in the Puget Sound region of Washington, 2 participants lived in California, and 1 participant each lived in Alabama, Michigan, Louisiana, Georgia, and New York. Twelve participants were receiving adjuvant therapy during the study, which indicated that they were either in a high-risk group and/or had advanced-stage disease. Thirteen participants had health insurance at the time of symptom onset, and all participants had elected to receive cancer treatment. Participants described knowledge gaps and silence about menopause, misinterpretation of vaginal bleeding, and responses by first-line health care practitioners that were not aligned with the risk of endometrial cancer among black women in the United States. Conclusions and Relevance: The responses of interviewed black women with endometrial cancer suggest that several mechanisms may be associated with a delay in care before diagnosis among this high-risk population and represent modifiable factors that may be useful in the development of targeted interventions to improve the rates of early diagnosis among black women with endometrial cancer.


Subject(s)
Black or African American/psychology , Endometrial Neoplasms/psychology , Metrorrhagia/psychology , Adult , Aged , Female , Health Knowledge, Attitudes, Practice , Humans , Interviews as Topic , Menopause/psychology , Middle Aged , Qualitative Research , Self Disclosure , United States
2.
Qual Life Res ; 29(4): 1013-1025, 2020 Apr.
Article in English | MEDLINE | ID: mdl-31845165

ABSTRACT

BACKGROUND: A niche in the uterus, present in 60% of women after caesarean section (CS), is associated with several gynaecological symptoms and possibly with subfertility. Studies that focus on quality of life (QoL) in relation to a niche are lacking. PURPOSE: To identify niche-related outcomes that influence QoL and to compare patient-reported outcomes with outcomes studied in the literature. METHODS: Two focus group discussions (FGDs, N = 8 and 5) were conducted in Amsterdam UMC-location VUmc. Participants were Dutch patients with a large niche, with (planned) surgical treatment for their symptoms. Niche-related symptoms and impact on functioning or participation were fixed topics. The transcripts of the FGDs were coded into outcomes, themes and domains of QoL according to the WHOQOL model. Additionally, participants created a top five important outcomes. Next, we performed a systematic review (SR) on niche-related outcomes and compared the FGDs with niche-related outcomes from the SR. RESULTS: In four domains (physical health, psychological domain, social relationships and environment), fifteen themes were reported in the FGDs. Abnormal uterine bleeding (AUB), subfertility, sexual activity, abdominal pain and self-esteem were themes prioritised by participants. In the literature, gynaecological symptoms and reproductive outcomes were predominantly studied. Sexuality and self-esteem were prioritised in the FGDs but hardly or never studied in the literature. CONCLUSION: We found a broad range of niche-related outcomes influencing QoL. Apart from symptoms evaluated in the literature such as AUB, abdominal pain and subfertility, clinicians and researchers should be more aware of sexual activity and self-esteem in this population.


Subject(s)
Cesarean Section/psychology , Cicatrix/psychology , Metrorrhagia/psychology , Quality of Life/psychology , Uterus/pathology , Abdominal Pain/psychology , Adult , Female , Focus Groups , Health Surveys/methods , Humans , Infertility, Female/psychology , Netherlands , Pregnancy , Self Concept , Sexual Behavior/psychology
3.
J Pediatr Adolesc Gynecol ; 30(2): 243-246, 2017 Apr.
Article in English | MEDLINE | ID: mdl-27751907

ABSTRACT

STUDY OBJECTIVE, DESIGN, SETTING, PARTICIPANTS, INTERVENTIONS, AND MAIN OUTCOME MEASURES: Bleeding disorders (BD) occur in up to 50% of adolescents with heavy menstrual bleeding (HMB). This presents unique challenges to health care providers because of the complexity of treating the condition and such complexity can result in difficulty with patients understanding basic information about their condition, limit communication with medical providers, and patient compliance. The aim of the study was to use an electronic approach to enhance patient compliance with medications used to treat their HMB, and to provide educational access to adolescents with BD. This was a prospective cohort study involving patients in a Young Women's Bleeding Disorder Clinic at a single children's hospital. Subjects were given an iPod Touch (Apple Inc, Cupertino, CA) device (ITD), preloaded with the iPeriod (Winkpass Creations) application. Participants recorded information about their BD that they learned about on BD Web sites, and menses, and medications. Electronic and charted data were collected to monitor compliance with prescribed treatment regimens. All ITD allowed Wi-Fi access to allow teens to explore BD Web sites and knowledge was assessed. RESULTS: Twenty-three of 45 subjects completed the study. The mean age was 14.1 ± 1.9 years. Subjects who were compliant with the ITD (group 1), charted on baseline symptoms, menstrual flow (83.3%), cramps (100%, 23/23), breakthrough bleeding (95.6%, 22/23), mood (95.6%, 22/23), and medication use (91.7%) for a mean of 9.3 ± 3.1 months. Subjects who were nonusers (group 2) did not report on symptoms, their condition, or medication use in the device (n = 22). More than 75% (17/23) of subjects in group 1 used hormones alone or hormones with antifibrinolytic agents to control HMB. No subjects stopped or missed medications who were in group 1 intentionally, and also there were 9 enrollees within this same group who missed a medication related to awaiting the prescription to be filled from pharmacy. In group 2, 17 enrollees missed medications, resulting in 19% (4/22) of these enrollees being admitted to hospital for 1-2 days. In addition, enrollees in group 2 missed more medications on average compared with group 1. No subjects in group 1 required admission for HMB treatment failure during the study period, compared with those in group 2 (P = .006). All subjects in group 1 reported accessing Web sites using their ITD to learn about their BD. Groups 1 and 2 did not differ in the number of medications that were prescribed during the time frame (P = .77) or the number of follow-up clinic visits (P = .49). Furthermore, those in group 1 reported fewer breakthrough bleeding episodes than those in group 2 according to clinic notes (P = .03). Users of the ITD were given a set of knowledge questions. Group 2 subjects were not consistent users of the ITD use and did not complete the knowledge questions. Group 1 and 2 could not be compared with regard to knowledge as a result. CONCLUSION: ITD is an excellent tool for adolescents with HMB and BD to allow self-monitoring, provider monitoring, and improve educational access through engaging technology; compliance with device use was associated with several parameters suggestive of improved clinical outcomes.


Subject(s)
Blood Coagulation Disorders/therapy , Menorrhagia/therapy , Mobile Applications , Patient Education as Topic/methods , Self Care/methods , Adolescent , Antifibrinolytic Agents/therapeutic use , Blood Coagulation Disorders/complications , Blood Coagulation Disorders/psychology , Female , Hormones/therapeutic use , Humans , MP3-Player , Menorrhagia/etiology , Menorrhagia/psychology , Metrorrhagia/etiology , Metrorrhagia/psychology , Metrorrhagia/therapy , Patient Compliance , Prospective Studies , Treatment Outcome
4.
Contraception ; 95(4): 390-397, 2017 Apr.
Article in English | MEDLINE | ID: mdl-28011288

ABSTRACT

OBJECTIVES: To obtain more precise and detailed information regarding the bleeding patterns of nomegestrol acetate (NOMAC)/17ß-estradiol (E2) and drospirenone/ethinyl estradiol (DRSP/EE) and to identify whether baseline demographic characteristics were associated with unscheduled bleeding, absent scheduled bleeding, or amenorrhea. STUDY DESIGN: This analysis pooled results from two pivotal open-label, randomized trials that compared bleeding patterns of NOMAC/E2 and DRSP/EE. In the two studies 4317 women aged 18-50 years from 24 countries across the Americas, Europe, and Asia underwent treatment. RESULTS: 2835 women taking NOMAC/E2 (2.5 mg/1.5 mg) in a 24/4-day regimen and 938 women taking DRSP/EE (3 mg/30 µg) in a 21/7-day regimen had at least 1 evaluable cycle for vaginal bleeding analyses. The frequency of absent scheduled bleeding was higher (p<.0001) for women using NOMAC/E2 than DRSP/EE across all 11 cycles (cycles 2-12), ranging between 17.6% and 31.6% and between 3.4% and 5.8%, respectively. For women who had absent scheduled bleeding in cycles 2, 3, or 4 the incidence of absent scheduled bleeding in subsequent cycles was high and ranged between approximately 50%-60% for NOMAC/E2 and approximately 40%-50% for DRSP/EE. Amenorrhea increased over time with both regimens, being higher with NOMAC/E2. Both absent scheduled bleeding and amenorrhea with NOMAC/E2 were more common in older women, overweight women, switchers, and smokers; unscheduled bleeding was more common in starters, but had no association with age, body mass index, and smoking. CONCLUSIONS: NOMAC/E2 is associated with a higher prevalence of absent scheduled bleeding compared with DRSP/EE. Absent scheduled bleeding and amenorrhea were associated with age, body weight, switching and smoking. Unscheduled bleeding was more common in starters. IMPLICATIONS: Information about the factors associated with bleeding patterns may help clinicians provide guidance to women considering use of the NOMAC/E2 oral contraceptive.


Subject(s)
Amenorrhea/chemically induced , Androstenes/adverse effects , Contraceptives, Oral, Combined/adverse effects , Estradiol/adverse effects , Ethinyl Estradiol/adverse effects , Megestrol/adverse effects , Metrorrhagia/chemically induced , Norpregnadienes/adverse effects , Adolescent , Adult , Amenorrhea/psychology , Estrogens , Female , Humans , Menstrual Cycle , Metrorrhagia/psychology , Middle Aged , Young Adult
5.
Hum Reprod ; 28(6): 1620-5, 2013 Jun.
Article in English | MEDLINE | ID: mdl-23526302

ABSTRACT

STUDY QUESTION: What are women's experiences with tailored use of combined oral contraceptive pills (COCPs)? SUMMARY ANSWER: Some women reported very positive experiences with tailored use of COCPs, others did not like the unpredictability about when they would bleed and some women reported increased anxiety about possible pregnancy. WHAT IS KNOWN ALREADY: While many studies have investigated views toward extended use of COCPs, little research has examined women's actual experiences with these regimens. STUDY DESIGN, SIZE, DURATION: This was a semi-structured qualitative interview study that was part of a larger randomized trial of a standard (21 daily pills followed by a 7-day pill-free interval) versus a tailored regimen (daily pills until 3-consecutive-day bleeding triggers a 3-day pill-free interval) of Microgynon 30® mcg (Ethinyl estradiol 30 mcg, Levonorgestrel 150 mcg). PARTICIPANTS/MATERIALS, SETTINGS, METHODS: Interviews were conducted with 26 women (17 in the tailored group and 9 who switched their assigned treatment group) . Data were analyzed using thematic analysis. MAIN RESULTS AND THE ROLE OF CHANCE: Women discussed positive changes associated with tailored use of COCPs, as well as some negative consequences. The major themes identified in the interview data were: ease of tailored regimen; changes in cycle-related symptoms; adjustment to reduced/absent bleeding and unpredictability about bleeding. LIMITATIONS, REASONS FOR CAUTION: The sample comprised mainly young, nulliparous women. The majority of women were using COCPs at the start of the study. WIDER IMPLICATIONS OF THE FINDINGS: Clinicians discussing extended-use regimes with patients should mention that women may need time to adjust to an extended-use regime. Future research should attempt to identify predictors of response to extended use of COCPs.


Subject(s)
Contraception/psychology , Contraceptives, Oral, Combined/therapeutic use , Adolescent , Adult , Contraception/methods , Contraceptives, Oral, Combined/adverse effects , Drug Combinations , Ethinyl Estradiol/adverse effects , Female , Humans , Levonorgestrel/adverse effects , Metrorrhagia/psychology , Middle Aged , Randomized Controlled Trials as Topic
7.
Menopause ; 18(5): 499-507, 2011 May.
Article in English | MEDLINE | ID: mdl-21228728

ABSTRACT

OBJECTIVE: Cross-sectional studies suggest an association between hysterectomy and negative affect. Using prospective data, we examined the associations of negative affect, attitudes toward aging and menopause, premenstrual symptoms, and vasomotor symptoms with elective hysterectomy in midlife. METHODS: Data were from the Study of Women's Health Across the Nation, a multisite, community-based prospective cohort study of the menopausal transition (n = 2,818). Annually reported hysterectomy at visits 2 to 9 was verified with medical records when available (71%). Anxiety, perceived stress, depressive symptoms, attitudes toward aging and menopause, vasomotor symptoms, and premenstrual symptoms were assessed at baseline using standardized questions. Cox proportional hazards models were used to relate these variables to subsequent elective hysterectomy. Covariates included demographic variables, menstrual bleeding problems, body mass index, hormone levels, and self-rated health, also assessed at baseline. RESULTS: Elective hysterectomy was reported by 6% (n = 168) of participants over an 8-year period. Women with hysterectomy were not higher in negative affect or negative attitudes toward aging and menopause compared with women without hysterectomy. Vasomotor symptoms (hazard ratio [HR], 1.44; 95% CI, 1.03-2.01; P = 0.03) and positive attitudes toward aging and menopause (HR, 1.74; 95% CI, 1.04-2.93) at baseline predicted hysterectomy over the 8-year period, controlling for menstrual bleeding problems, site, race/ethnicity, follicle-stimulating hormone, age, education, body mass index, and self-rated health. Menstrual bleeding problems at baseline were the strongest predictor of hysterectomy (HR, 4.30; 95% CI, 2.05-9.05). CONCLUSIONS: In this prospective examination, negative affect and attitudes were not associated with subsequent hysterectomy. Menstrual bleeding problems were the major determinant of elective hysterectomy.


Subject(s)
Attitude , Elective Surgical Procedures/psychology , Hysterectomy/psychology , Metrorrhagia/psychology , Adult , Female , Health Surveys/statistics & numerical data , Hot Flashes/psychology , Humans , Metrorrhagia/epidemiology , Middle Aged , Perimenopause/psychology , Prospective Studies , Surveys and Questionnaires
8.
Obstet Gynecol ; 115(3): 543-551, 2010 Mar.
Article in English | MEDLINE | ID: mdl-20177285

ABSTRACT

OBJECTIVE: To identify static and time-varying sociodemographic, clinical, health-related quality-of-life and attitudinal predictors of use and satisfaction with hysterectomy for noncancerous conditions. METHODS: The Study of Pelvic Problems, Hysterectomy, and Intervention Alternatives (SOPHIA) was conducted from 1998 to 2008. English-, Spanish-, or Chinese-speaking premenopausal women (n=1,420) with intact uteri who had sought care for pelvic pressure, bleeding, or pain from an academic medical center, county hospital, closed-panel health maintenance organization, or one of several community-based practices in the San Francisco Bay area were interviewed annually for up to 8 years. Primary outcomes were use of and satisfaction with hysterectomy. RESULTS: A total of 207 women (14.6%) underwent hysterectomy. In addition to well-established clinical predictors (entering menopause, symptomatic leiomyomas, prior treatment with gonadotropin-releasing hormone agonist, and less symptom resolution), greater symptom impact on sex (P=.001), higher 12-Item Short Form Health Survey mental component summary scores (P=.010), and higher scores on an attitude measure describing "benefits of not having a uterus" and lower "hysterectomy concerns" scores (P<.001 for each) were predictive of hysterectomy use. Most participants who underwent hysterectomy were very (63.9%) or somewhat (21.4%) satisfied in the year after the procedure, and we observed significant variations in posthysterectomy satisfaction across the clinical sites (omnibus P=.036). Other determinants of postsurgical satisfaction included higher pelvic problem impact (P=.035) and "benefits of not having a uterus" scores (P=.008) before surgery and greater posthysterectomy symptom resolution (P=.001). CONCLUSION: Numerous factors beyond clinical symptoms predict hysterectomy use and satisfaction. Providers should discuss health-related quality of life, sexual function, and attitudes with patients to help identify those who are most likely to benefit from this procedure.


Subject(s)
Attitude to Health , Elective Surgical Procedures , Hysterectomy , Patient Satisfaction , Quality of Life , Academic Medical Centers , Adult , Female , Health Maintenance Organizations , Hospitals, County , Humans , Interviews as Topic , Longitudinal Studies , Metrorrhagia/complications , Metrorrhagia/psychology , Metrorrhagia/surgery , Middle Aged , Pelvic Pain/complications , Pelvic Pain/psychology , Pelvic Pain/surgery , Sexual Dysfunction, Physiological/psychology , Sexual Dysfunction, Physiological/surgery
9.
Value Health ; 10(3): 183-94, 2007.
Article in English | MEDLINE | ID: mdl-17532811

ABSTRACT

OBJECTIVES: Abnormal uterine bleeding (AUB) impacts women's health-related quality of life (HRQoL) and puts a heavy economic burden on society. To date, this burden has not been systematically studied. We conducted a systematic review of the medical literature to evaluate the impact of AUB on HRQoL and to quantify the economic burden of AUB from a societal perspective. METHODS: We searched the PubMed and Cochrane databases, and article bibliographies for the period up to July 2005. Teams of two reviewers independently abstracted data from studies that reported outcomes of interest: prevalence, HRQoL, work impairment, and health-care utilization and costs associated with AUB. RESULTS: The search yielded 1009 English-language articles. Ninety-eight studies (including randomized controlled trials, observational studies, and reviews) that met the inclusion and exclusion criteria underwent a full-text review. The prevalence of AUB among women of reproductive age ranged from 10% to 30%. The HRQoL scores from the 36-item Short-Form Health Survey Questionnaire (SF-36) suggested that women with AUB have HRQoL below the 25th percentile of that for the general female population within a similar age range. The conservatively estimated annual direct and indirect economic costs of AUB were approximately $1 billion and $12 billion, respectively. These figures do not account for intangible costs and productivity loss due to presenteeism. CONCLUSIONS: The burden of AUB needs further and more thorough investigation. Additional research should prospectively evaluate the impact of AUB and the value of treatment provided to help guide future health resource allocation and clinical decision-making.


Subject(s)
Cost of Illness , Health Care Costs/statistics & numerical data , Metrorrhagia/complications , Metrorrhagia/economics , Quality of Life , Adult , Female , Health Services/statistics & numerical data , Health Status , Humans , Metrorrhagia/psychology , Metrorrhagia/therapy , Sick Leave/economics
10.
Obstet Gynecol Surv ; 53(1): 45-9, 1998 Jan.
Article in English | MEDLINE | ID: mdl-9440129

ABSTRACT

Nineteen review articles and case reports were identified and reviewed through August 1996 in Index Medicus, MEDLINE (English and foreign language), conference abstracts, and bibliographies from major articles, textbooks and reviews, to review Munchausen's syndrome in obstetrics and gynecology. In these 19 articles, 30 reported cases of the syndrome were identified in obstetric and gynecological patients. This survey found that the presentation varied, diagnosis was difficult, treatment was unclear, and the economic burden was enormous. Increasingly, this syndrome is becoming an important clinical entity in the specialty, and requires a high index of suspicion to improve detection and optimize treatment.


Subject(s)
Munchausen Syndrome by Proxy/psychology , Munchausen Syndrome/psychology , Pregnancy Complications/psychology , Adult , Female , Humans , Infant , Metrorrhagia/psychology , Munchausen Syndrome/complications , Neuropsychology , Pregnancy , Pregnancy, Ectopic/psychology , Self-Injurious Behavior/psychology
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