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ORIGINAL RESEARCH |
From the Section on Women’s Health Research, Developmental Endocrinology Branch, National Institute of Child Health and Human Development, National Institutes of Health, Bethesda, Maryland.
Address reprint requests to: Lawrence M. Nelson, MD, MBA, National Institutes of Health, National Institute of Child Health and Human Development, Section on Women’s Health Research, Developmental Endocrinology Branch, Building 10, Room 10N262, Bethesda, MD 20892-1862; E-mail: lawrence_nelson{at}nih.gov.
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ABSTRACT |
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 ABSTRACT MATERIALS AND METHODSRESULTSDISCUSSIONREFERENCES |
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METHODS: We asked 50 patients previously diagnosed with spontaneous premature ovarian failure to participate in a structured interview survey consisting of 38 true-or-false, multiple-choice, and open-ended questions.
RESULTS: Disturbance in menstrual pattern was the most common initial symptom in the 48 women who completed the interview (44 of 48, 92%). Over half of the 44 women who presented with this complaint reported visiting a clinician’s office three or more times before laboratory testing was performed to determine the diagnosis. Over half of them reported seeing three or more different clinicians before diagnosis. In 25% of women it took longer than 5 years for the diagnosis of premature ovarian failure to be established. Patients who spent more than 5 minutes with the clinician discussing the diagnosis were significantly more likely to be satisfied with the manner in which they were informed (P < .001). Ninety percent of participants were college graduates, and 40% had graduate degrees.
CONCLUSION: Women with spontaneous premature ovarian failure perceived a need for more aggressive evaluation of secondary amenorrhea and oligomenorrhea. Loss of menstrual regularity can be a sign of ovarian insufficiency, and the associated estrogen deficiency is a well-established risk factor for osteoporosis.
Readily available modern commercial assays make it possible to quantify circulating steroid and protein hormone levels and thus differentiate patients with amenorrhea into distinct etiologic categories. In 1990 Rebar and Connolly1 recommended the measurement of basal gonadotropin concentrations in all women with amenorrhea, so as to promptly identify women with spontaneous premature ovarian failure or other types of amenorrhea. Coulam et al2 found among 2000 women in Rochester, Minnesota, that the age-specific incidence of premature ovarian failure was approximately one in 1000 by age 30, one in 200 by age 35, and one in 100 by age 40 years.
We previously reported that two thirds of young women with karyotypically normal spontaneous premature ovarian failure had osteopenia in the femoral neck when initially seen at the National Institutes of Health Clinical Center,3 although most of the women had previously sought medical advice and had been prescribed estrogen and progestin replacement. This finding raises the possibility that delay in diagnosis of ovarian insufficiency might have contributed to the development of osteopenia and that significant bone loss could have occurred during the delay. In the present study, we investigated the experiences of patients who have spontaneous premature ovarian failure with regard to initial presenting symptom, promptness of diagnosis, and patient education once the diagnosis had been established.
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MATERIALS AND METHODS |
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ABSTRACTMATERIALS AND METHODSRESULTSDISCUSSIONREFERENCES |
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We asked 50 consecutive women with spontaneous premature ovarian failure to participate in a structured interview survey. These patients visited the National Institutes of Health (NIH) Clinical Center between September 2000 and June 2001. The sample size of 50 was selected with intent to get a general idea regarding how these patients perceive their quality of care. The study objective was not to define narrow statistical ranges for each response. Women were informed that the survey was being conducted so that we could learn more about the needs of women who have been diagnosed with premature ovarian failure. Two investigators conducted the interview surveys by administering a structured script. The script contained 38 true-or-false, multiple-choice, or open-ended questions. We tabulated individual responses on preprinted paper worksheets then transferred these into a computer spreadsheet.
We analyzed the data using a personal computer software package and computed descriptive statistics for the measures used in analysis (SigmaStat 2.0, SPSS Inc., Chicago, IL). We report them as mean ± standard deviation for normally distributed data and as median, range, and percentiles for other data. The 95% confidence intervals of proportions were calculated according to the binomial distribution.4 The Fisher exact test assessed differences in proportions of categoric measures. We set significance using 
= .05. We used the Kolmogorov-Smirnov test (with Lilliefors correction) to test data for normality of the estimated underlying population.
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RESULTS |
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Disturbance in menstrual pattern was the most common initial presenting symptom (44 of 48, 92%). Most women (36 of 48, 75%) first saw a gynecologist for evaluation. Amenorrhea of 3 or more months duration was the presenting menstrual pattern in 28 women (58%), oligomenorrhea in 14 women (29%), polymenorrhea in one woman (2%), and menometrorrhagia associated with vasomotor symptoms in one woman (2%). None had primary amenorrhea. Two women (4%) presented initially with infertility, and the diagnosis of premature ovarian failure was established after failed attempts at ovulation induction. The onset of vasomotor symptoms was the primary presenting complaint of two women (4%). One woman with vasomotor symptoms was still having regular spontaneous menses at initial presentation, and in the other woman, the vasomotor symptoms began shortly after she stopped taking oral contraceptives.
Of the 44 women who presented with a disordered menstrual pattern, the median age at onset of the symptom was 25 years (Table 1
). The median time from the onset of disordered menses until the patient sought medical evaluation was 3 months. However, 16% of the women did not seek evaluation for more than 1 year. The median time from the onset of disordered menses until the diagnosis of premature ovarian failure was established was 2 years. In 25% of the women it was more than 5 years after the onset of a disordered menstrual pattern before the diagnosis of premature ovarian failure was established.
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Just over half the women (58%) were informed of the diagnosis during an office visit, and most patients (65%) spent more than 5 minutes discussing the diagnosis (Table 3). However, 42% of women were informed of the diagnosis over the telephone, and 35% of women had less than 5 minutes to discuss the situation with the clinician who made the diagnosis. Patients reported that two thirds of the informing clinicians made no referral to additional sources of information about premature ovarian failure. The Internet was used most frequently by patients seeking additional information on their own.
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DISCUSSION |
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The results of this structured interview survey led us to conclude that many young women with spontaneous premature ovarian failure perceived a lack in quality of care regarding the diagnosis of their condition. Several women mentioned to us that in retrospect they wish they had seen a clinician sooner and that they had been more insistent on the need for earlier laboratory testing. If these women had had a more thorough understanding of menstrual health they might have been more proactive in seeking the cause of the disturbance.
We found that most patients with premature ovarian failure have oligomenorrhea or amenorrhea as their initial symptom. These are relatively common symptoms in young women; thus, it is understandable that over half of our patients did not consider missing menses as an important health issue. Approximately 3–4% of reproductive-aged women experience 3 months of amenorrhea each year.11–13 In a Danish postal survey, only 39% of women with secondary amenorrhea had contacted a physician about the condition.12
A delay in the evaluation and treatment of ovarian insufficiency, as evidenced by abnormal menstrual cycle patterns, might place young women at increased risk of developing osteoporosis in later life. Evidence is accumulating that clinically significant loss of bone density can occur in such women even without the development of amenorrhea. Even asymptomatic disturbances of ovulation and minor disturbances in menstrual cycle patterns in young women have been associated with accelerated loss of bone density and an increased risk of wrist and hip fracture in the long term.14–16 Less than optimal development of bone density during adolescence and young adulthood is as important as later bone loss in the development of osteoporosis.7
Our findings are preliminary; they should be confirmed in larger population-based studies designed to avoid acquisition bias. Nevertheless, the findings suggest a need for more population-based research in adolescent girls and young women to define the relative role of gonadal insufficiency in determining the long-term risk of osteoporosis. Spontaneous premature ovarian failure might represent a small part of a large continuum of clinical estrogen insufficiency that presents primarily as idiopathic oligomenorrhea.17
The challenge facing the busy clinician is to distinguish efficiently the relatively few patients with amenorrhea who have a serious disorder from the many patients presenting with this relatively common symptom.18 Menstrual cycle interval is remarkably stable in women between the ages of 20 and 40 years.19,20 The development of amenorrhea could be the first indication of a significant pathologic process.21
At a minimum, our findings are supportive of the 1990 recommendation by Rebar and Connolly1 that the measurement of basal gonadotropin concentrations in all women with amenorrhea is indicated to promptly identify women with spontaneous premature ovarian failure as well as other types of amenorrhea. With the current availability of estradiol assays there is little need to administer the progestin challenge test except perhaps to reassure the woman that she can menstruate.21 It has been well established that patients with premature ovarian failure intermittently might have normal estradiol levels, and thus the progestin challenge test can be falsely reassuring and contribute to a delay in diagnosis.1,22 Office-based research is needed to develop a costeffective approach to the diagnosis and treatment of secondary amenorrhea.
Women who wish to have children find the diagnosis of spontaneous premature ovarian failure particularly traumatic.23,24 The associated infertility is a major life change that often generates a series of symptoms similar to the grief reaction.25 For this reason a carefully planned approach is required when informing patients of this diagnosis. It appears that there is ample room for improvement in how clinicians communicate the diagnosis of spontaneous premature ovarian failure to patients.
Our findings suggest that spending a little more time informing patients about the diagnosis and referring them to other sources of information could better meet the needs of young women with spontaneous premature ovarian failure. The Internet was used most frequently by patients to search out more information about their diagnosis (81% did so). Referring patients who have Internet access to accurate sources of medical information about spontaneous premature ovarian failure could be an efficient means to enhance patient education about the condition. Referral to the Premature Ovarian Failure Support Group is beneficial to most patients (http://pofsupport.org/).
The fact that spontaneous premature ovarian failure is a relatively uncommon condition might contribute to a delay in diagnosis. It is well established that patients who present with rare diseases often experience such a delay.26 Our findings are in agreement with The Report of the National Commission on Orphan Diseases, which found that only half of patients with a rare disease reported receiving a diagnosis within the first year of visiting a clinician. Furthermore, the commission found that in almost one third of the patients surveyed, it took from 1 to 5 years to obtain a diagnosis, and one in seven patients did not have a diagnosis for 6 years or more.26
A recent survey commissioned by the ACOG showed that women in the United States were pleased with the care that they received from their gynecologists.27 Nevertheless, in the current practice environment clinicians face increasing demands on their time from administrative requirements related to health care management.28 Many clinicians feel rushed and believe that they are not able to spend as much time with patients as they would prefer.29 This might partially explain why patients reported to us that 35% of clinicians spent fewer than 5 minutes discussing the diagnosis of spontaneous premature ovarian failure with them.
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Footnotes |
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Received September 24, 2001. Received in revised form January 10, 2002. Accepted January 31, 2002.
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REFERENCES |
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2. Coulam CB, Adamson SC, Annegers JF. Incidence of premature ovarian failure. Obstet Gynecol 1986;67:604–6.
3. Anasti JN, Kalantaridou SN, Kimzey LM, Defensor RA, Nelson LM. Bone loss in young women with karyotypically normal spontaneous premature ovarian failure. Obstet Gynecol 1998;91:12–5.[Abstract]
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7. Osteoporosis prevention, diagnosis, and therapy. JAMA 2001;285:785–95.
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9. Fahy UM, Cahill DJ, Wardle PG, Hull MG. Osteoporotic fractures in young amenorrheic women. Acta Obstet Gynaecol Scand 1994;73:417–9.[Medline]
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16. Nicodemus K, Folsom A, Anderson K. Menstrual history and risk of hip fractures in postmenopausal women: The Iowa women’s health study. Am J Epidemiol 2001;153: 251–5.
17. Nelson LM, Anasti JN, Flack MR. Premature ovarian failure. In: Adashi EY, Rock JA, Rosenwaks Z, eds. Reproductive endocrinology, surgery, and technology. New York: Raven Press; 1995:1393–410.
18. Speroff L, Glass RH, Kase NG. Amenorrhea. Clinical gynecologic endocrinology and infertility. Baltimore, MD: Lippincott Williams & Wilkins; 1999:421–85.
19. Treloar AE, Boynton RE, Behn BG, Brown BW. Variation of the human menstrual cycle through reproductive life. Int J Fertil 1970;12:77–126.
20. Belsey EM, Pinol AP. Menstrual bleeding patterns in untreated women. Task Force on Long-Acting Systemic Agents for Fertility Regulation. Contraception 1997;55: 57–65.[Medline]
21. Mishell DRJ, Stenchever MA, Droegemueller W, Herbst AL. Primary and secondary amenorrhea. In: Comprehensive gynecology. St. Louis, MO: Mosby; 1997:1043–67.
22. Nelson LM, Anasti JN, Kimzey LM, Defensor RA, Lipetz KJ, White BJ, et al. Development of luteinized Graafian follicles in patients with karyotypically normal spontaneous premature ovarian failure. J Clin Endocrinol Metab 1994;79:1470–5.[Abstract]
23. Orshan SA, Furniss KK, Forst C, Santoro N. The lived experience of premature ovarian failure. J Obstet Gynecol Neonatal Nurs 2001;30:202–8.[Medline]
24. Liao KL, Wood N, Conway GS. Premature menopause and psychological well-being. J Psychosom Obstet Gynaecol 2000;21:167–74.[Medline]
25. Mishell DRJ, Stenchever MA, Droegemueller W, Herbst AL. Emotional aspects of gynecology. In: Comprehensive gynecology. St. Louis, MO: Mosby; 1997:171–95.
26. Thoene J, Crooks GM. Report of the National Commission on Orphan Diseases. U.S. Department of Health and Human Services, Public Health Service, Office of the Assistant Secretary of Health, Washington DC, 1989.
27. Ob-gyns get high marks in survey of US women. ACOG Today 2001;45:1–10.
28. Dugdale DC, Epstein R, Pantilat SZ. Time and the patient-physician relationship. J Gen Intern Med 1999;14(Suppl 1):S34–S40.
29. Campion EW. A symptom of discontent. N Engl J Med 2001;344:223–5.
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