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The validity and reliability of the Knowledge of Women's Issues and Epilepsy (KOWIE) Questionnaires I and II.

Abstract: The Knowledge of Women's Issues in Epilepsy (KOWIE) Questionnaires I and II were developed to assess what women with epilepsy (WWE) and practitioners know about relevant topics and concerns. Prior to disseminating any tool, an instrument should be both valid and reliable. The purpose of this study was to report the validity and reliability of the KOWIE Questionnaires I and II. To establish validity, the original KOWIE was sent to five experts who critiqued the relevance of each item. A content validity inventory (CVI) was developed later and sent to 20 additional epilepsy experts across the country. Tool stability was evaluated by test-retest procedures. Patients and practitioners completed corresponding tools on day one, and 24 hours later, on day two. Participants were asked to not review information on the topic of interest until after study procedures were completed. Sixteen of 20 exploit responses were included in data analysis; 4 were excluded due to incomplete data. The CVI correlation coefficient was 0.92. Test-retest results from all 9 patients and 18 of 20 healthcare professionals were included in data analysis. Correlation coefficients were 0.88 and 0.83 for the KOWIE I and II, respectively, confirming these questionnaires are valid and reliable. While future knowledge may require altering both tools, the current instrument may be used as an assessment tool and guide intervention as it pertains to outcomes in WWE.

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Counseling is an important intervention for patients with epilepsy. It is estimated that nearly 1 million American women of childbearing age have epilepsy. Health issues that challenge women with epilepsy (WWE) and their healthcare providers include menstrual cycle influence on seizure activity, contraceptive-antiepileptic drug interaction, pharmacokinetic change during pregnancy, teratogenicity of antiepileptic drugs, breastfeeding, and the impact of antiepileptic drugs on bone health and sexual function. In recent years, literature on women's issues in epilepsy has grown substantially, but data demonstrate inadequate knowledge on these important topics. Previous studies reveal a lack of knowledge among women with epilepsy (Long, McAuley, Moore, Cambier, & Caruso, 2001) and the healthcare professionals involved in their care (Crawford & Lee, 1999; Fairgrieve et al., 2000; Krauss, Brandt & Campbell, 1996; Long, 2002; Morrell et al., 2000).

Krauss, Brandt, and Campbell (1996) performed a national survey of neurologists and obstetricians and demonstrated that many practitioners do not have accurate information about interactions between oral contraceptives and antiepileptic drugs. In their survey, less than 5% of respondents knew the pharmacokinetic drug interaction between oral contraceptives and six common antiepileptic drugs (carbamazepine, ethosuximide, phenytoin, phenobarbital, primidone, and valproic acid). Morrell et al. (2000) report the results of the Epilepsy Foundation of America's survey of healthcare professionals on their knowledge about women's issues in five areas: hormone-sensitive seizures, fertility and contraception, pregnancy and contraception, sexuality, and bone density. The data demonstrate deficiencies in knowledge of women's issues among professionals most likely to be involved in the care of WWE. Of 3,535 respondents, a majority knew that some antiepileptic drugs interact with contraceptives, but most did not know which antiepileptic drugs were responsible for the interactions. Half of the respondents were unsure of the frequency of birth defects caused by antiepileptic drugs. A majority of these respondents were willing to learn about these important issues, however.

Crawford and Lee (1999) surveyed patients about the information they received from healthcare professionals on contraception and pregnancy. Based upon the 1,855 questionnaires returned, 51% of respondents claimed they did not receive any advice about possible drug interactions between antiepileptic drug therapy and contraceptives. Regarding pregnancy, 59% said they had not received any advice or had not discussed pregnancy with their healthcare provider. Another 7% said they had received advice about the teratogenic effects of antiepileptic drugs. This study demonstrated that WWE want and need more information and counseling about the key healthcare concepts that affect them. In their cohort of women with epilepsy, Fairgrieve et al. (2000) further demonstrated there is much to be done to educate healthcare professionals and patients when it was reported that fewer than 50% of the WWEs planned their pregnancies, nearly 25% reported contraceptive failure, and fewer than 15% took appropriate doses of folate. Long (2002) evaluated the knowledge of similar womens' issues among WWE. While most of the women knew they should not discontinue their medication if riley were to become pregnant, the majority were unaware of the effects of certain antiepileptic drugs on bone health and breastfeeding. Seventeen percent of respondents said they were told they should not have children because of their epilepsy. More than 30% said they were "afraid" to have children because they had epilepsy.

The Knowledge of Women's Issues and Epilepsy (KOWIE) Questionnaires I and II (Tables 1 and 2) were developed to assess what women (KOWIE I) and healthcare professionals (KOWlE II) know about relevant topics and concepts. These tools were developed to provide a standardized questionnaire for use in both research and clinical practice. This study established content validity and test-retest reliability of KOWIE Questionnaires I and II.

Methods

The original KOWIE was sent to five epilepsy experts who critiqued the relevance of each question. Experts comprised practitioners who had authored a variety of publications in the epilepsy field and had at least 5 years of related experience. Comments and suggestions were incorporated into the tools, and then evaluated for validity and reliability.

Content validity refers to the extent to which the method of measurement includes the major elements relevant to the concept of interest. In addition to a comprehensive review of the literature and clinical experience, content validity is established by obtaining feedback from at least five knowledgeable experts well versed in the topic of interest (Summers, 1993). A content validity inventory (CVI) is commonly used to quantitatively evaluate agreement among experts who review a newly designed tool (Anders, Tomai, Clute, & Olson, 1997).

A CVI for the KOWIE II (Table 3) was developed and sent to 20 epilepsy experts across the country. Experts included epileptologists, epilepsy nurse specialists, pharmacists, and social workers. On an ordinal scale of 1 to 4, each expert rated the appropriateness of each item as it pertained to women and epilepsy. Items rated I corresponded to not relevant, and a rating of 4 corresponded to extremely relevant. Items rated a 1 or 2 were considered not relevant, and those rated 3 or 4 were considered relevant. Results were then calculated based on item agreement, with 80% representing the minimum acceptable outcome (Summers, 1993). Both questionnaires include concepts specific to pregnancy, hormones, contraception, bone health, teratogenesis, breastfeeding, and sexual function. All 10 items on both questionnaires are the same, but they are written at different levels of comprehension for patients and practitioners. Because both questionnaires include the same concepts, only one CVI was developed. While it is generally best to assess content validity in the population of intended use (i.e., patients), epilepsy experts are more likely to be aware of pertinent concepts than patients are. Consequently, the validity of the KOWIE I may be inferred based upon the validity of KOWIE II.

Because each questionnaire was developed for a different population, the stability of the KOWIE I and KOWIE II was individually determined by patients and healthcare professionals, respectively. Both patients and healthcare professionals were given a copy of the questionnaire on day one, and were asked to repeat it on the following day, day two. Subjects were asked to not review information on related concepts until after they returned the final questionnaire.

Results

Content Validity

Sixteen of 20 experts responded to the CVI, four of whom were excluded because of incomplete data. The CVI participants included epileptologists (n = 4), advance practice nurses (n = 3), social workers (n = 2), and pharmacists (n = 3). In general, experts rated most items as relevant issues of discussion for WWE. The correlation coefficient for 9 of 10 items was 1.0. Two experts rated the question pertaining to catamenial issues (hormones) as a 2, indicating it is an "interesting issue," but not as clinically relevant as others. The correlation coefficient for this item was 0.83. The total CVI correlation coefficient was 0.92.

Test-Retest Reliability

Nine patients and 20 epilepsy nurses were recruited to participate in the test-retest procedures for the KOWIE I and KOWIE II, respectively. On day one, each participant completed the corresponding questionnaire. Questionnaires were repeated on day two (24 hours later). Participants did not review data pertaining to womens' issues and epilepsy. Data from all 9 patients and from 18 nurses were used in analysis. Two nurse questionnaires were excluded due to incomplete data. Test-retest coefficient correlations were 0.88 for the KOWIE I, and 0.83 for the KOWIE II.

Discussion

Due to the magnitude and complexity of issues regarding WWE, developing a knowledge questionnaire is a challenging task. WWEs require additional counseling interventions that correlate with clinical outcomes. The KOWIE questionnaire includes items supported by current evidence-based information, emphasizing the summary statement of the American Academy of Neurology guidelines (American Academy of Neurology, 1998) developed by the United Kingdom's Women with Epilepsy Guidelines Development Group (Crawford & Lee, 1999) and information from the American College of Obstetricians and Gynecologists (American College of Obstetricians and Gynecologists, 1997).

The initial KOWIE II questionnaire featured items such as healthcare professionals' comfort when treating WWE, whether WWE should have children, the correlation between valproic acid and polycystic ovary syndrome (PCO), and whether enzyme-inducing antiepileptic drugs were responsible for the hemorrhagic disorder seen in the offspring of WWE. A question pertaining to reduced bone mass was specific to first-line antiepileptic drugs such as valproate. Based on feedback from epilepsy experts, some of the above questions were deleted. Most experts felt the questions on perceptions were not as relevant, and that some of the questions were not supported by conclusive data (i.e., studies evaluating the correlation between valproate and PCO have yielded conflicting results [Bauer, Jarre, Klingmuller, & Elger 2000; Isojarvi, Laatikainen, & Pakarinen, 1993; Murialdo et al., 1998]). While valproic acid has been correlated with osteomalada (Kafali, Erselcan, & Tanzer, 1999; Sheth et al., 1995) two of the experts felt the data were not conclusive enough to ask the question in the original form. In addition, because benzodiazepines also have been correlated with the hemorrhagic disorder seen in the offspring of WWE (McAuley & Anderson, 2002), this original question was revised as well.

When at least six experts establish content validity, one or more can disagree and the instrument is still considered valid (Lynn, 1986). Two participants believed the question concerning menstrual cycle changes and hormones was interesting, but not clinically relevant. The other 10 participants thought this topic was important; as a result, the question was included in the final tool. While there is no clear gold standard for patients with catamenial symptoms, there are treatment options that are somewhat beneficial.

The KOWIE questionnaires are similar to previous surveys, but do not include specific questions on percentages or certain terminologies (i.e., the term "catamenial epilepsy"). Recognizing that percentages and terminology are important, the incidence (percentage) of specific issues such as teratogenesis may vary depending on the population studied and the infant's antiepileptic drug exposure (McAuley & Anderson, 2002). The most frequently reported incidence of major malformation in WWE is 4% to 6%. Data from national pregnancy registries, however, likely will provide additional data unique to specific antiepileptic drugs, including the newer-generation drugs.

Summary

The KOWIE I and KOWIE II were found valid and reliable. Because future studies may alter current knowledge, it is likely the KOWIE questionnaires will need to be modified. The current questionnaire may be applied clinically to guide interventions for WWE, and also may be used in clinical research.

Acknowledgments

The authors would like to thank the patients, epileptologists, epilepsy nurse specialists, social workers, and pharmacists who responded to the content validity inventory and test-retest procedures. They would also like to acknowledge Dr. Nancy Ryan-Wenger for her assistance with data analysis. This study was supported by UCB Pharmaceutical Incorporated, and Shire Incorporated, USA.

References

American Academy of Neurology Quality Standards Subcommittee Report. (1998). Practice parameter: Management issues for women with epilepsy (summary statement). (1998). Epilepsia, 39, 1226-1231.

American College of Obstetricians and Gynecologists Committee on Educational Bulletins. (1997). ACOG educational bulletin. Seizure disorders in pregnancy. International Journal of Gynaecology and Obstetrics, 56, 279-286.

Anders, R. L., Tomai, J. S., Clute, R. M., & Olson, T. (1997). Development of a scientifically valid coordinated care path. The Journal of Nursing Administration, 27(5), 45-52.

Bauer, J., Jarre, A, Klingmuller, D., & Elger, C. E. (2000). Polycystic ovary syndrome in patients with focal epilepsy: A study in 93 women. Epilepsy Research, 41(2), 163-167.

Crawford, P., & Lee, P (1999). Gender difference in management of epilepsy--What women are hearing. Seizure, 8, 135-139.

Fairgrieve, S. D., Jackson, M., Jonas, P., Walshaw, D., White, K., Montgomery, T. L., et al. (2000). Population based, prospective study of the care of women with epilepsy in pregnancy. British Medical Journal, 321,674-675.

Isojarvi, J. I., Laatikainen, T. J., & Pakarinen, A. J. (1993). Polycystic ovaries and hyperandrogenism in women taking valproate for epilepsy. New England Journal of Medicine, 329, 1383-1388.

Kafali, G., Erselcan,T., & Tanzer, E (1999). Effect of antiepileptic drugs on bone mineral density in children between age 6 and 12 years. Clinical Pediatrics, 38, 93-98.

Krauss, G. L., Brandt, J., & Campbell, M. (1996). Antiepileptic medicine and oral contraceptive interactions: A national survey of neurologists and obstetricians. Neurology, 46, 1534-1539.

Long, L. (2002).An evaluation of knowledge of women's issues in epilepsy: A survey of health care professionals. Epilepsia, 43(Suppl. 7), 233.

Long, L., McAuley, J. W., Moore, J. L., Cambier, D., & Caruso, M. (2001).An evaluation of knowledge of women's issues in female patients with epilepsy. Epilepsia, 42(Suppl. 7), 286-287.

Lynn, M. R. (1986). Determination and quantification of content validity. Nursing Research, 35, 382-385.

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Morrell, M. J., Sarto, G. E., Shafer, P. O., Borda, E. A., Herzog, A., & Callanan, M. (2000). Health issues for women with epilepsy: A descriptive survey to assess knowledge and awareness among healthcare providers. Journal of Womens Health & Gender-Based Medicine, 9, 959-965.

Murialdo, G., Galimberti, C. A., Gianelli, M. V., Rollero, A., Polleri, A., and Copello, E, et al. (1998). Effects of valproate, phenobarbital, and carbamazepine on sex steroid setup in women with epilepsy. Clinical Neuropharmacology, 21(1), 52-58.

Sheth, R. D., Wesolowski, C. A., Jacob, J. C., Penney, S., Hobbs, G. R., Riggs, J. E., et al. (1995). Effect of carbamazcpine and valproate on bone mineral density. Journal of Pediatrics, 127, 256-262.

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Questions or comments about this article may be directed to Lucretia Long, Department of Neurology, Division of Epilepsy, 1654 Upham Drive, 417 Means Hall, Columbus, Ohio 43210-1250, or via e-mail at long.278@osu.edu. She is a clinical assistant professor of neurology and an epilepsy nurse practitioner at Ohio State University College of Medicine.

James W. McAuley, RPh PhD, is an associate professor of pharmacy practice and neurology at Ohio State University, Columbus, OH.

Bassel Shneker, MD, is an assistant professor of neurology at Ohio State University.

J. Layne Moore, MD MPH, is an associate professor of neurology and pharmacy practice at Ohio State University.
Table 1. Knowledge of Women's Issues and Epilepsy (KOWIE I), A Survey
for Women with Epilepsy

 True (T), False (F), Don't Know (D)

 1. Most women with epilepsy have T F D
 healthy children.
 2. You should stop taking your T F D
 seizure medicine if you
 become pregnant.
 3. Taking folic acid before and T F D
 during pregnancy may reduce
 birth defects.
 4. Seizures may worsen around T F D
 your menstrual cycle.
 5. Some seizure medicine may T F D
 cause birth control pills to
 not work.
 6. Women with epilepsy should T F D
 not have children.
 7. Some seizure medicine may T F D
 cause your bones to get
 weaker.
 8. Vitamin K may reduce the T F D
 chance of a newborn-bleeding
 problem associated with
 certain seizure medicine.
 9. Women with epilepsy are more T F D
 likely to have sexual
 problems (decreased orgasms,
 reduced sex drive) compared
 to women without epilepsy.
10. Most women taking seizure T F D
 medicine can safely breast-
 feed.

Age --
Number of years with epilepsy --
Years of school --

Table 2. Knowledge of Women's Issues and Epilepsy (KOWIE II), A Survey
for Healthcare Professionals

 True (T), False (F), Don't Know (D)

 1. The majority of women with T F D
 epilepsy have healthy
 children.
 2. Women with epilepsy should T F D
 stop taking their anti-
 epileptic drugs (AED) when
 they become pregnant.
 3. Taking folic acid before and T F D
 during pregnancy may reduce
 teratogenesis in children
 born to women with epilepsy
 taking AEDs.
 4. During the menstrual cycle, T F D
 endogenous estrogen has been
 found to be pro-convulsant,
 while progesterone has
 anticonvulsant qualities.
 5. Enzyme inducing AEDs may T F D
 reduce the effectiveness of
 various contraceptives.
 6. The best AED during pregnancy
 is the one that is most
 appropriate for the patient's
 seizure type and/or syndrome.
 7. Some AEDs are associated with T F D
 osteomalacia (reduced bone
 mass).
 8. Vitamin K may reduce the risk T F D
 of newborn hemorrhagic
 disorder associated with
 certain AEDs.
 9. Women with epilepsy have a T F D
 higher incidence of sexual
 dysfunction compared to women
 without epilepsy.
10. Most women taking AEDs can T F D
 safely breast-feed.

Please circle your current specialty

a) General Practitioner

b) Neurologist

c) Obstetrician/Gynecologist

d) Neuroscience Nurse Practitioner

e) Internist

f) Neuroscience Nurse

g) Pharmacist

h) Other --

On average, I evaluate and/or treat approximately -- epilepsy patients
per month.

Please circle your gender. Male Female

Number of years in practice -- Age --

I am interested in learning more about women's issues and epilepsy.
Yes No

Table 3. Content Validity Inventory

On an ordinal scale of one (1) to four (4), with (1) denoting an
irrelevant item and (4) denoting an extremely relevant item, please
rate the following questions pertaining to its relevance to women's
issues and epilepsy.

 1=Not relevant
Knowledge of Women's Issues and Epilepsy (KOWIE II) 4=Highly relevant

 1. The majority of women with epilepsy have 1 2 3 4
 healthy children.
 2. Women with epilepsy should stop taking their 1 2 3 4
 antiepileptic drugs (AEDs) when they become
 pregnant.
 3. Taking folic acid before and during pregnancy 1 2 3 4
 may reduce teratogenesis in children born to
 women with epilepsy taking AEDs.
 4. During the menstrual cycle, endogenous estrogen 1 2 3 4
 has been found to be pro-convulsant, while
 progesterone has anticonvulsant qualities.
 5. Enzyme inducing AEDs may reduce the 1 2 3 4
 effectiveness of various contraceptives.
 6. The best AED during pregnancy is the one that 1 2 3 4
 is most appropriate for the patient's seizure
 type and/or syndrome.
 7. Some AEDs are associated with osteomalacia 1 2 3 4
 (reduced bone mass).
 8. Vitamin K may reduce the risk of newborn hemor- 1 2 3 4
 rhagic disorder associated with certain AEDs.
 9. Women with epilepsy have a higher incidence of 1 2 3 4
 sexual dysfunction (decreased orgasm, decreased
 sex drive) compared to women without epilepsy.
10. Most women taking AEDs can safely breast-feed. 1 2 3 4

What other topics, if any, should be included in this questionnaire?
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Author:Long, Lucretia; McAuley, James W.; Shneker, Bassel; Moore, J. Layne
Publication:Journal of Neuroscience Nursing
Geographic Code:1USA
Date:Apr 1, 2005
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