ACKNOWLEDGEMENTS
The authors thank all of those anonymous individuals who took the time to read and complete the extensive survey posted on the INCIID website.
Table 1 Demographic Characteristics of OO’s and AO’s *
OO |
AO |
P value |
|
|---|---|---|---|
% with annual household Income over 75,000 |
38% |
52% |
p=.006 |
Mean Age |
31.4 ± 5.6 |
32.3 ± 4.9 |
P=.08 |
% who are female |
99% |
99% |
n.s. |
% who are married |
98% |
94% |
n.s. |
Mean # months married |
59.1 ± 39.8 |
63.1 ± 45.4 |
n.s. |
Mean # months trying to conceive |
32.7 ± 28.0 |
28.9 ± 20.7 |
n.s. |
% with no college education |
15% |
3% |
p=.001 |
Have been pregnant |
57% |
64% |
n.s. |
Have given birth to healthy baby |
10% |
15% |
n.s. |
Have ever miscarried |
28% |
45% |
p=.001 |
Have ever had an Ectopic pregnancy |
7% |
8% |
n.s. |
Have ever adopted |
4% |
3% |
n.s. |
% whose occupation was “homemaker |
20% |
12% |
p=.045 |
% knowing of a RESOLVE Inc. chapter within driving distance |
66% |
78% |
p=.048 |
% with RESOLVE Inc. Chapter within driving distance who attend meetings |
9% |
14% |
p=.075 |
Mean U.S. dollars spent on diagnosis and treatment (out of pocket) |
$4,880 ± $7,932 |
$4,966 ± $11,226 |
n.s. |
% who have no insurance coverage for infertility |
28% |
12% |
p=.000 |
Table 2: Diagnostic and Treatment Information
Diagnostic tests ,Diagnoses and treatments |
OO |
AO |
P value |
|---|---|---|---|
% Currently undergoing diagnosis or treatment for infertility |
75% |
77% |
n.s. |
% have done hormonal testing |
73% |
73% |
n.s. |
% have had cervical mucus testing |
31% |
37% |
n.s. |
% have used ovulation predictor kits |
72% |
76% |
n.s. |
% have had a hysterosalpingogram |
54% |
66% |
p=.01 |
% whose partner has had a semen analysis |
70% |
74% |
n.s. |
Diagnosis: PCOS |
21% |
11% |
p=.003 |
Diagnosis: endometriosis |
10% |
16% |
p=.053 |
Diagnosis: Male Factor |
24% |
25% |
n.s. |
Diagnosis: Tubal Factor |
9% |
11% |
n.s. |
Diagnosis: Ovulatory Problem |
34% |
31% |
n.s. |
Diagnosis: Uterine Factor |
3% |
5% |
n.s. |
Diagnosis: Unexplained Infertility |
27% |
22% |
n.s. |
Problem: Recurrent Miscarriage |
12% |
14% |
n.s. |
% have had an intrauterine insemination |
36% |
36% |
n.s. |
% have had endometriosis surgery |
14% |
14% |
n.s. |
% have done an IVF, GIFT, or ZIFT procedure |
18% |
19% |
n.s. |
% somewhat or very dissatisfied with treatment |
24% |
14% |
p=.015 |
Table 3: Mode and consequences of Internet participation
Mode of Internet Participation |
OO |
AO |
P value |
|---|---|---|---|
Mean # total hours per day on Internet |
2.36 ± 1.38 |
2.07 ± 1.33 |
P=.026 |
Mean # infertility hours per day on Internet |
1.58 ± 1.02 |
1.32 ± 1.02 |
P=.01 |
% not participating in any INCIID medical boards |
16% |
20% |
n.s. |
% not participating in any INCIID support boards |
29% |
43% |
p=.001 |
% who visit the (INCIID) general Infertility medical board |
65% |
53% |
p=.008 |
% who visit the (INCIID) miscarriage medical board |
17% |
24% |
p=.043 |
Get a great deal of support from medical boards |
46% |
28% |
p=.002 |
Internet forums are extremely helpful for learning how to deal with physicians |
46% |
32% |
p=.03 |
Get a great deal of support from medical boards |
46% |
28% |
p=.002 |
Internet forums extremely valuable for sharing news about own treatment |
65% |
49% |
p=.009 |
Internet forums valuable for allowing patient to share her signs and symptoms |
74% |
60% |
p=.002 |
Internet forums are extremely helpful when patient feels depressed |
61% |
44% |
p=.002 |
Internet forums give patients “permission” to avoid awkward social situations |
31% |
23% |
p=.045 |
Internet forums support patient’s inclination to avoid talking with “fertile others” |
46% |
30% |
p=.001 |
I get a great deal of useful medical information from medical board visits |
53% |
40% |
p=.051 |
I switched from an OB/GYN to a reproductive endocrinologist |
28% |
19% |
p=.024 |
I learned that men and women have different feelings about infertility |
40% |
32% |
p=.047 |
Learned that “I am not crazy” (for feeling and acting as I do) |
56% |
45% |
p=.019 |
I have become less inclined to talk to my partner |
22% |
7% |
p=.000 |
Table 4: Depression, Stress, Satisfaction, Worry, Support, and ability to cope with infertility
Depression, Stress, Support, and ability to cope with infertility |
OO |
AO |
P value |
|---|---|---|---|
Mean Beck Depression Inventory score |
12.90 ± 8.44 |
9.94 ± 8.16 |
p=.000 |
Mean Stress scale score (LCU between 0 and 100) |
65.08 ± 20.77 |
60.92 ± 22.52 |
p=.039 |
% with moderate or severe depression |
40% |
27% |
p=.000 |
How educated about infertility (1 most to 4 least) |
2.01 ± .79 |
1.86 ± .73 |
p=.03 |
How able to identify own feelings about infertility (1=most to 4=least) |
1.99 ± .83 |
1.84 ± .70 |
p=.036 |
How able to challenge your unreasonable or unrealistic views about infertility |
2.08 ± .75 |
1.90 ± .77 |
p=.019 |
How able to work as a team with your partner to support one another through infertility |
1.94 ± .88 |
1.59 ± .74 |
p=.000 |
How able to be an active consumer and partner to your physician in your infertility treatment |
1.72 ± .78 |
1.59 ± .65 |
p=.048 |
How able to “hang in” despite setbacks as long as you have the resources to do so and your goal is still to get pregnant |
1.86 ± .76 |
1.72 ± .67 |
P=.032 |
How much emotional support do you feel you get from your spouse |
1.82 ± .81 |
1.49 ± .69 |
P=.000 |
How much emotional support do you feel you get from your parents |
2.27 ± .1.03 |
2.02 ± .89 |
P=.006 |
How much emotional support do you feel you get from your in-laws |
2.79 ± 1.10 |
2.58 ± 1.05 |
P=.065 |
How much emotional support do you feel you get from your friends |
2.22 ± .93 |
1.80 ± .74 |
P=.000 |
How much emotional support from other infertile couples |
1.65 ± .88 |
1.39 ± .58 |
P=.001 |
How much do you worry about your health (1=all the time to 5=hardly ever) |
3.19 ± 1.29 |
3.50 ± 1.17 |
P=.007 |
How much do you worry about your relationship with your spouse |
4.00 ± 1.26 |
4.36 ± 1.04 |
P=.001 |
Abma J, Chandra A, Mosher W, Peterson L, Piccinino L. Fertility, family planning, and women’s health: New data from the 1995 National Survey of Family Growth. National Center for Health Statistics. Vital Health Stat 23(19). 1997. p. 59
Abma J, Chandra A, Mosher W, Peterson L, Piccinino L. Fertility, family planning, and women’s health: New data from the 1995 National Survey of Family Growth. National Center for Health Statistics. Vital Health Stat 23(19). 1997 p. 7
Leiblum SR, Greenfield DA. The course of infertility: immediate and long-term reactions. In: SR Leiblum, ed. Infertility: Psychological Issues and Counseling Strategies. New York : John Wiley & Sons, 1997:83-102
Domar A. Stress and infertility in women. In: SR Leiblum, ed. Infertility: Psychological Issues and Counseling Strategies. New York : John Wiley & Sons, 1997:67-82.
Andrews F, Abbey A, Hallman, J. Is fertility problem stress different? The dynamics of stress in fertile and infertile couples. Fertil Steril 1992;57:1247-53
Resolve, Inc. Resolving infertility: understanding the options and choosing solutions when you want to have a baby New York : Harper Collins: 1999.
Epstein YM. Infertility resources on the Internet. Assist Reprod Rev 1997;7:86-98.
Weissman A, Gotlieb L, Ward S, Greenblatt E, Casper RF. Use of the Internet by infertile couples. Fertil Steril 2000;73:1179-82.
Epstein YM, Rosenberg HS. Infertility support on the Internet. Abstracts of the Scientific Oral and Poster Sessions of the 52 nd Annual Meeting of the American Society for Reproductive Medicine, 1996:S215-S-216.
Nie NH, Erbring L. Internet and society: a preliminary report. Stanford Institute for the quantitative study of society. Stanford CA: 2000.
Rosenberg HS, Epstein YM. The Internet and infertility. In: HS Rosenberg YM Epstein. Getting pregnant when you thought you couldn’t. New York: Warner Books, 2001:356-372.
http://www.abcnews.go.com/sections/tech/DailyNews/netaddiction990823.html
Kraut R, Patterson M, Lundmark V, Kiesler S, Mukopadhyay T, Scherlis W. Internet paradox: a social technology that reduces social involvement and psychological well-being? American Psychologist. 1998;53:1017-31.
Kraut R, Kiesler S, Boneva B, Cummings J Helgeson V, Crawford A. Internet Paradox Revisited. Journal of Social Issues (in press)
Andrews FM, Withey SB. Developing measures of perceived life quality: Results from seven national surveys. Social Indicators Research. 1974;1:1-26.
Beck AT. Depression: Causes and treatment. Philadelphia : University of Pennsylvania Press, 1967.
Holmes TS, Rahe RH. The social readjustment rating scale. J. Psychosom Res. 1967;11:213-18.
SPSS Inc. SPSS for Windows Release 10.0. Chicago : SPSS Inc., 1999
Dunkel-Schetter C, Lobel M.. Psychological reactions to infertility. In: AL Stanton C Dunkel-Schetter. Infertility: Perspectives from stress and coping research. New York : Plenum Press, 1991:29-57.