In The Name of GOD In The Name of GOD A cross-sectional cohort study of infertile women awaiting...

In The Name of GODIn The Name of GOD

A cross-sectional cohort study of infertile women awaiting oocyte donation: the emotional, sexual, and quality-of-life impact

Masoumeh Ebrahimi Tavani

MSc in Midwifery, MPH, PhD Student in Heath Education (Tarbiat Modares University)Senior Expert (Academic Research Staff), Deputy for Public Health, Ministry of Health & Medical Education

Email: [email protected], [email protected]

Journal club, Tarbiat Modares University, Date: 9.3.91

mailto:[email protected]

mailto:[email protected]

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دهد مى پسر بخواهد كس هر به و دختر دهد بخواهد مى پسر بخواهد كس هر به و دختر بخواهد((4949.).)

وهركهرابخواهدعقيممىكند وهركهرابخواهدعقيممىكند ويـاهمپسرانـىمـىدهدوهمدخترانى، ويـاهمپسرانـىمـىدهدوهمدخترانى، ﴿ است توانا دانايى او ﴿ كه است توانا دانايى او ﴾.﴾.5050كه

Journal club. Tarbiat Modares. 9.3.1391 M.Ebrahimi Tavani 2

... : اما مالقات قرار یه برانگیز اعجاب ... تصویر : اما مالقات قرار یه برانگیز اعجاب تصویر! معمولی !نه معمولی نه


IntroductionIntroduction

Infertility is medically defined as a Infertility is medically defined as a lack of lack of conception following at least one year conception following at least one year of of unprotected sexual intercourse (WHO, 2009).unprotected sexual intercourse (WHO, 2009).

Infertility can Infertility can cause considerable social, cause considerable social, cultural, emotional and psychological cultural, emotional and psychological consequences. consequences.

Although this condition affect many couples Although this condition affect many couples around the world; however, it is still a topic around the world; however, it is still a topic that is not widely discussed.that is not widely discussed.


Infertility is a global issue in aInfertility is a global issue in a ‘Fertile World’‘Fertile World’


Fertility Rate World MapFertility Rate World Map


FactsFacts

It is estimated that worldwide between It is estimated that worldwide between 70 and 80 70 and 80 million couplesmillion couples suffer from infertility,suffer from infertility, most of most of these are residents of developingthese are residents of developing countries.countries.

There is a high There is a high prevalence (10% -15%) prevalence (10% -15%) of infertility of infertility in these countries.in these countries.

In Iran, reports show that a higher In Iran, reports show that a higher prevalence prevalence about 15% -20%about 15% -20% (between10%-20% based on (between10%-20% based on provinces and researches). provinces and researches).

Some of the causes of infertility in developing Some of the causes of infertility in developing countries are countries are higher age of marriage, post-partum higher age of marriage, post-partum infection, unsafe abortion, iatrogenic tubal and infection, unsafe abortion, iatrogenic tubal and pelvic infertility, tuberculosis, air pollutionpelvic infertility, tuberculosis, air pollution, high , high incidence of male factor infertility,….incidence of male factor infertility,….. .


Some Socio-Cultural and Psychological Some Socio-Cultural and Psychological Aspects of InfertilityAspects of Infertility

Social Pressures and ImpactSocial Pressures and Impact Psychological and Emotional PressurePsychological and Emotional Pressure Religious IssuesReligious Issues Ethical IssuesEthical Issues Gender IssuesGender Issues Equity IssuesEquity Issues Financial CostFinancial Cost Invisible Pain and Burden of InfertilityInvisible Pain and Burden of Infertility Parenthood IssuesParenthood Issues Quality of LifeQuality of Life Parenthood/Adoption/Multiple Births and effectsParenthood/Adoption/Multiple Births and effects Support IssuesSupport Issues ……..


Title of PaperTitle of Paper

A cross-sectional cohort study of infertile A cross-sectional cohort study of infertile women awaiting oocyte donation: the women awaiting oocyte donation: the emotional, sexual, and quality-of-life emotional, sexual, and quality-of-life impactimpact

Key Words: Infertility, oocyte donation, quality of lifeKey Words: Infertility, oocyte donation, quality of life

Fertility and Sterility Vol. 95, No. 2, February 2011 Fertility and Sterility Vol. 95, No. 2, February 2011 P:711-6 Copyright ª2011 American Society for P:711-6 Copyright ª2011 American Society for Reproductive Medicine, Published by Elsevier IncReproductive Medicine, Published by Elsevier Inc


Fertility and Sterility JournalFertility and Sterility Journal

Facts & Figures:Facts & Figures: Impact Factor: 3.958 3.958 5-Year Impact Factor: 3.475 3.475 Issues per year: 16 16

http://en.wikipedia.org/wiki/Catalan_language

AuthorsAuthors Jeanne Carter, Ph.D.,Jeanne Carter, Ph.D.,a,b a,b

Linda Applegarth, Ed.D.,Linda Applegarth, Ed.D.,cc Laura Josephs, Ph.D.,Laura Josephs, Ph.D.,c c Elizabeth Grill, Psy.D.,Elizabeth Grill, Psy.D.,c c Raymond E. Baser, M.S.,Raymond E. Baser, M.S.,dd and and Zev Rosenwaks, M.D.Zev Rosenwaks, M.D.cc

• aa Department of Psychiatry and Department of Psychiatry and bb Department of Surgery, Gynecology Department of Surgery, Gynecology Service, Memorial Sloan-Kettering Cancer Center, New York;Service, Memorial Sloan-Kettering Cancer Center, New York;

• cc The Ronald O. Perelman and Claudia Cohen Center f or Reproductive The Ronald O. Perelman and Claudia Cohen Center f or Reproductive Medicine, Weill Medical College of Cornell University, New York Presbyterian Medicine, Weill Medical College of Cornell University, New York Presbyterian Hospital, New York; and Hospital, New York; and

• dd Department of Epidemiology and Biostatistics,Memorial Sloan-Kettering Department of Epidemiology and Biostatistics,Memorial Sloan-Kettering Cancer Center, New York, New YorkCancer Center, New York, New York


ObjectiveObjective

To examine the emotional, sexual, To examine the emotional, sexual, physical, and quality-of-life (QOL) physical, and quality-of-life (QOL) impact on infertile women awaiting impact on infertile women awaiting oocyte donation.oocyte donation.


OOCYTE DefinitionOOCYTE Definition

oocyte /oo·cyte/ (-sīt) the immature female oocyte /oo·cyte/ (-sīt) the immature female reproductive cell prior to fertilization; derived reproductive cell prior to fertilization; derived from an from an oogonium. .

It is a It is a primary o.primary o. prior to completion of the prior to completion of the first maturation division, and a first maturation division, and a secondary o.secondary o. in the period between the first and second in the period between the first and second maturation divisions . maturation divisions . Source: Dorland's Medical Dictionary for Health Consumers. Source: Dorland's Medical Dictionary for Health Consumers. © 2007 by Saunders, an imprint of Elsevier, Inc. All rights © 2007 by Saunders, an imprint of Elsevier, Inc. All rights reserved.reserved.


http://medical-dictionary.thefreedictionary.com/oogonium

AbstractAbstract

Design: Cross-sectional cohort study.Design: Cross-sectional cohort study.Setting: Cancer center and reproductive Setting: Cancer center and reproductive

medicine center.medicine center.Patient(s): Fifty infertile women awaiting Patient(s): Fifty infertile women awaiting

oocyte donation, enrolled from October 2006 oocyte donation, enrolled from October 2006 to February 2009.to February 2009.

Intervention(s): Woman awaiting oocyte Intervention(s): Woman awaiting oocyte donation completed a one-time survey of donation completed a one-time survey of empirical measures and exploratory items.empirical measures and exploratory items.


IntroductionIntroduction According to the CDC, of 62 million women of According to the CDC, of 62 million women of

childbearing age, approximately 5 million (8%) had childbearing age, approximately 5 million (8%) had sought infertility-related medical consultation at sought infertility-related medical consultation at some point in their lives (1). some point in their lives (1).

Technologic advances such as intrauterine Technologic advances such as intrauterine insemination (IUI), intra cytoplasmic sperm injection insemination (IUI), intra cytoplasmic sperm injection (ICSI), and in vitro fertilization (IVF) have led to (ICSI), and in vitro fertilization (IVF) have led to countless successful conceptions; however, these countless successful conceptions; however, these techniques can lead to physical, psychological, social, techniques can lead to physical, psychological, social, and economic burdens. and economic burdens.


Introduction )cont(Introduction )cont(• Recent studies exploring patterns of use and dropout from Recent studies exploring patterns of use and dropout from

IVF programs showed that women often IVF programs showed that women often discontinue discontinue treatment because of psychological factors treatment because of psychological factors (2–5). (2–5).

• Infertility is an Infertility is an emotionally challenging experience emotionally challenging experience (6) that (6) that causes distress levels comparable to those of other major causes distress levels comparable to those of other major illnesses (e.g., cancer or AIDS) (7), and is associated with illnesses (e.g., cancer or AIDS) (7), and is associated with psychosocial consequences (8) including guilt and stigma (9), psychosocial consequences (8) including guilt and stigma (9), anxiety and depression (10, 11), relationship issues (12), anxiety and depression (10, 11), relationship issues (12), sexual dysfunction (13, 14), and poor health-related quality sexual dysfunction (13, 14), and poor health-related quality of life (QOL) (15, 16).of life (QOL) (15, 16).

• Many reproductive centers require Many reproductive centers require mandatory counseling mandatory counseling sessionssessions before reproductive treatment (17). before reproductive treatment (17).


MATERIALS AND METHODSMATERIALS AND METHODS


Study DesignStudy Design This study This study was approved was approved by the institutional review by the institutional review

boards (IRB) of the Ronald O. Perelman and Claudia boards (IRB) of the Ronald O. Perelman and Claudia Cohen Center for Reproductive Medicine (CRM) and Cohen Center for Reproductive Medicine (CRM) and Memorial Sloan-Kettering Cancer Center (MSKCC).Memorial Sloan-Kettering Cancer Center (MSKCC).

The participants are from a multi group comparison The participants are from a multi group comparison study conducted from study conducted from October 2006 to February 2009 October 2006 to February 2009 that examined the experience of infertile women with that examined the experience of infertile women with various conditions (i.e., cancer vs. noncancer), which various conditions (i.e., cancer vs. noncancer), which was published in detail elsewhere (26). was published in detail elsewhere (26).


Patients/ ParticipantsPatients/ Participants Study eligibility criteria included :Study eligibility criteria included : no cancer history, 18 to 49 years of age at recruitment, history no cancer history, 18 to 49 years of age at recruitment, history

of infertility and on a wait list for oocyte donation, had not of infertility and on a wait list for oocyte donation, had not started or completed childbearing, English speaking, and able started or completed childbearing, English speaking, and able to provide informed consent.to provide informed consent.

Potential participants were sent introductory letters Potential participants were sent introductory letters describing the study.describing the study.

A phone number to call for those who did not wish any A phone number to call for those who did not wish any further contact. further contact.

Follow-ups were conducted directly with participants and not Follow-ups were conducted directly with participants and not via messages left on answering machines/voicemails.via messages left on answering machines/voicemails.


Patients/ Participants )cont(Patients/ Participants )cont( Potential participants were contacted by telephone and Potential participants were contacted by telephone and

invited to participate. invited to participate. Ninety women Ninety women were eligible for study participation based on were eligible for study participation based on

medical chart reviews; medical chart reviews; 20 were unreachable20 were unreachable,, and and 2 2 were were deemed deemed ineligibleineligible after further discussion with study staff. after further discussion with study staff.

Of the 68 women, 4 declined study participation, 13 passively Of the 68 women, 4 declined study participation, 13 passively refused (showed interest but did not follow up), and 1 did not refused (showed interest but did not follow up), and 1 did not complete the survey. complete the survey.

The The remaining 50 women remaining 50 women ((74% participation rate74% participation rate) consented ) consented and completed the one-time survey via telephone or in and completed the one-time survey via telephone or in person.person.


MeasuresMeasures

The survey included 7 empirical measures. The survey included 7 empirical measures.

The survey also assessed demographics, general The survey also assessed demographics, general medical information, and exploratory items medical information, and exploratory items addressing reproductive informational needs; addressing reproductive informational needs; perception of, use of, and access to third-party perception of, use of, and access to third-party parenting; and health-related concernsparenting; and health-related concerns


Main Outcome Measures & Tools

1.1. Reproductive concernsReproductive concerns

2.2. DepressionDepression

3.3. Sexual functionSexual function

4.4. DistressDistress

5.5. Menopausal symptoms Menopausal symptoms

6.6. Physical and mental Physical and mental healthhealth

7.7. Relationship satisfactionRelationship satisfaction

1.Reproductive Concerns Scale (RCS)1.Reproductive Concerns Scale (RCS)

2.Center for Epidemiologic Studies 2.Center for Epidemiologic Studies Depression Scale (CES-D)Depression Scale (CES-D)

3.Female Sexual Function Index (FSFI) 3.Female Sexual Function Index (FSFI)

4.Impact of Events Scale (IES)4.Impact of Events Scale (IES)

5.Menopausal Symptom Checklist 5.Menopausal Symptom Checklist

6.Medical Outcomes SF-12 Health 6.Medical Outcomes SF-12 Health Survey Survey

7.Abbreviated Dyadic Adjustment 7.Abbreviated Dyadic Adjustment Scale (ADAS)Scale (ADAS)

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SUPPLEMENTAL APPENDIX: EMPIRICAL SUPPLEMENTAL APPENDIX: EMPIRICAL MEASURES OF STUDY SURVEYMEASURES OF STUDY SURVEY


RCSRCS


RCS )cont(RCS )cont(


CES-DCES-D


FSFIFSFI


IESIES


MSCMSC


SF-12SF-12


Abbreviated Dyadic Adjustment Scale Abbreviated Dyadic Adjustment Scale )ADAS()ADAS(

The DAS is an instrument designed to assess the The DAS is an instrument designed to assess the quality of relationships as perceived by married or quality of relationships as perceived by married or cohabitating couples. It is a general measure of cohabitating couples. It is a general measure of satisfaction in relationshipssatisfaction in relationships. .

The ADAS is an abbreviated, 7-item DAS designed The ADAS is an abbreviated, 7-item DAS designed by Sharpley et al. Normative data suggest that a by Sharpley et al. Normative data suggest that a mean ADAS score of 25.6 indicates relationship mean ADAS score of 25.6 indicates relationship satisfactionsatisfaction and dyadic adjustment (37, 38). and dyadic adjustment (37, 38).


Statistical AnalysisStatistical Analysis

Descriptive statistics Descriptive statistics summarize the summarize the demographics, medical information, demographics, medical information, exploratory fertility and third-party exploratory fertility and third-party reproduction items, and empirical instrument reproduction items, and empirical instrument outcomes. outcomes.

Qualitative analysis Qualitative analysis consisted of the standard consisted of the standard procedures for qualitative thematic text procedures for qualitative thematic text analysis.analysis.


RESULTSRESULTS


Demographics and Medical Demographics and Medical CharacteristicsCharacteristics

- The median age was - The median age was 40 years 40 years (range: 28 to 46 years) (range: 28 to 46 years) - Sixty percent had at least some college experience or had - Sixty percent had at least some college experience or had

graduated, and 40% had attended graduate school. graduated, and 40% had attended graduate school. - Forty-eight women (96%) were white.- Forty-eight women (96%) were white.- Thirty one - Thirty one (62%) were employed full time, and eight ((62%) were employed full time, and eight (16%16%) part) parttime. time. - Forty-seven (94%) were married or living with someone- Forty-seven (94%) were married or living with someone- Forty-two (84%) had undergone egg retrieval with IVF,- Forty-two (84%) had undergone egg retrieval with IVF,and 15 (30%) had used egg donation with IVF. and 15 (30%) had used egg donation with IVF. -Thirty-two percent had used other family-building options—-Thirty-two percent had used other family-building options—

sperm donation, intrauterine insemination, and/or adoption.sperm donation, intrauterine insemination, and/or adoption.Journal club. Tarbiat Modares. 9.3.1391

M.Ebrahimi Tavani 41

Demographics and Medical Demographics and Medical Characteristics Characteristics (Cont)(Cont)

No statistically significant differences were found on No statistically significant differences were found on any of the psychological variables by age or having a any of the psychological variables by age or having a child. child.

Although Although women younger than 40 years tended to women younger than 40 years tended to have more reproductive concerns than women ages have more reproductive concerns than women ages 40 years and older40 years and older, the mean difference was not , the mean difference was not statistically significant (4.3 points, P=.08); women statistically significant (4.3 points, P=.08); women with no children tended to have more reproductive with no children tended to have more reproductive concerns than women who already had children, but concerns than women who already had children, but the mean difference was not statistically significant the mean difference was not statistically significant (4.2 points, P=.09).(4.2 points, P=.09).


HispanicHispanic

Hispanic (Spanish: Hispanic (Spanish: hispano, hispánicohispano, hispánico; Portuguese: ; Portuguese: hispânico, hispanohispânico, hispano, Catalan: , Catalan: hispà, hispànichispà, hispànic) is an ) is an ethnonym that denotes a relationship to Spain or to ethnonym that denotes a relationship to Spain or to ancient Hispania, which comprised Andorra, ancient Hispania, which comprised Andorra, Portugal, Spain and the territory of Gibraltar. Today, Portugal, Spain and the territory of Gibraltar. Today, organizations in the United States use the term organizations in the United States use the term Hispanic to either denote a relationship to Spain or/ Hispanic to either denote a relationship to Spain or/ and Portugal. Some organizations intend to and Portugal. Some organizations intend to encapsulate only the Spanish-speaking population, encapsulate only the Spanish-speaking population, limiting the definition to that subset.limiting the definition to that subset.

Source: Wikipedia, the free encyclopediaSource: Wikipedia, the free encyclopediaJournal club. Tarbiat Modares. 9.3.1391

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Empirical MeasuresEmpirical Measures


Emotional impactEmotional impact- The mean score on the - The mean score on the CES-DCES-D—an assessment of —an assessment of

depressiondepression was 13.15, falling in the subclinical was 13.15, falling in the subclinical range; however, range; however, 33% scored ≥1633% scored ≥16, suggesting a , suggesting a diagnosis of depression .diagnosis of depression .

- Twenty-nine women (59%) indicated higher levels of Twenty-nine women (59%) indicated higher levels of distress on the IESdistress on the IES: 22 (45%), moderate; 7 (14%), : 22 (45%), moderate; 7 (14%), severe. Fourteen (29%) had mild levels of distress on severe. Fourteen (29%) had mild levels of distress on the IES, and 6 (12%) scored in the subclinical range. the IES, and 6 (12%) scored in the subclinical range.

- The mean score on the The mean score on the ADAS—an assessment of ADAS—an assessment of relationship satisfactionrelationship satisfaction and dyadic—was 25.54, and dyadic—was 25.54, which was comparable with the population norm which was comparable with the population norm (≥25.6).(≥25.6).


Emotional impactEmotional impact


Reproductive concernsReproductive concerns

The RCS mean score was The RCS mean score was 27.20; 37% scored above 27.20; 37% scored above the mean, indicating a high degree of reproductive the mean, indicating a high degree of reproductive concerns. concerns.

The most noted items were [1] ‘‘Concerns about my The most noted items were [1] ‘‘Concerns about my ability to have children’’ (44, 88%); [2] ‘‘I am sad ability to have children’’ (44, 88%); [2] ‘‘I am sad that my ability to have children has been affected’’ that my ability to have children has been affected’’ (43, 86%); [3] ‘‘I am frustrated that my ability to (43, 86%); [3] ‘‘I am frustrated that my ability to have children has been affected’’ (43, 86%); and [4] have children has been affected’’ (43, 86%); and [4] ‘‘I am able to talk openly about fertility or ‘‘I am able to talk openly about fertility or reproductive concerns’’ (42, 84%).reproductive concerns’’ (42, 84%).


Sexual functionSexual function

The The mean score mean score on the FSFI—an on the FSFI—an assessment of sexual function—was assessment of sexual function—was 24.09. 24.09.

Scores Scores ≤%26.55 ≤%26.55 indicate sexual indicate sexual dysfunction. dysfunction. Twenty-two women (47%) Twenty-two women (47%) scored below the clinical cutoffscored below the clinical cutoff. .


Sexual functionSexual function


Menopausal issuesMenopausal issues

women were somewhat to very bothered by women were somewhat to very bothered by insomniainsomnia (22, 44%), (22, 44%), intestinal gas intestinal gas (18, 36%), (18, 36%), weight gainweight gain (17, 34%), (17, 34%), indigestionindigestion (15, 34%), (15, 34%), early awakening early awakening (16, 32%), and (16, 32%), and aches and aches and painpain (15, 30%), but fewer women had (15, 30%), but fewer women had hot hot flashesflashes (10, 20%), (10, 20%), pain with intercourse pain with intercourse (5, (5, 10%), or 10%), or vaginal dryness vaginal dryness (9, 18%) noted with (9, 18%) noted with menopause (40).menopause (40).


Menopausal issuesMenopausal issues


Quality of lifeQuality of life

The Medical Outcomes SF-12 was used to The Medical Outcomes SF-12 was used to assess physical and mental well-being. assess physical and mental well-being.

The The mean score on the PCS was 56.76, above mean score on the PCS was 56.76, above the cutoff (50 points), suggesting good the cutoff (50 points), suggesting good physical QOL. physical QOL.

The mean The mean MCSMCS, however, , however, was 44.63, below was 44.63, below the cut-off, indicating below average mental the cut-off, indicating below average mental health QOL; 68% scored in this rangehealth QOL; 68% scored in this range..


Quality of lifeQuality of life


Exploratory ItemsExploratory Items


Reproductive techniquesReproductive techniques

Ranking the following family-building options: Ranking the following family-building options:

egg donation, surrogacy, adoption, and foster child. egg donation, surrogacy, adoption, and foster child. Four women (8%) indicated adoption as their ‘‘most Four women (8%) indicated adoption as their ‘‘most

acceptable’’ reproductive option. acceptable’’ reproductive option. Forty-seven (94%) chose egg donation as their best Forty-seven (94%) chose egg donation as their best

optionoption. . Thirty-one women (62%) indicated fostering a child as Thirty-one women (62%) indicated fostering a child as

the ‘‘least acceptable’’ option, and 13 (26%) felt surrogacy the ‘‘least acceptable’’ option, and 13 (26%) felt surrogacy was their least acceptable option.was their least acceptable option.


Fostering- AdoptionFostering- Adoptionfoster childfoster child

• 1. a child raised by someone who is not its natural or 1. a child raised by someone who is not its natural or adoptive parent. adoptive parent.

• 2. a needy child, as one living in an impoverished country, 2. a needy child, as one living in an impoverished country, supported or aided by contribution to a specific charity. supported or aided by contribution to a specific charity.

adoption - a legal proceeding that creates a adoption - a legal proceeding that creates a parent-child relation between persons not parent-child relation between persons not related by blood; the adopted child is entitled related by blood; the adopted child is entitled to all privileges belonging to a natural child of to all privileges belonging to a natural child of the adoptive parentsthe adoptive parents


Reproductive techniques )cont(Reproductive techniques )cont(• Thirty-two women (64%) indicated they were Thirty-two women (64%) indicated they were ‘‘worried about‘‘worried about harm to their body from reproductive treatment.’’harm to their body from reproductive treatment.’’

• Forty-five women (90% response rate) described their Forty-five women (90% response rate) described their ‘‘experience with reproductive assistance’’ as highs and lows ‘‘experience with reproductive assistance’’ as highs and lows (18, 40%), that is, (18, 40%), that is, ‘‘rollercoaster’’ or ‘‘excitement followed by ‘‘rollercoaster’’ or ‘‘excitement followed by crushing disappointment”.crushing disappointment”.

• The majority(44 out of 47, 94%), expressed feelings of The majority(44 out of 47, 94%), expressed feelings of gratitude and thankfulness for having reproductive options, gratitude and thankfulness for having reproductive options, but also recognized financial (7, 15%), ethical (5, 11%), and but also recognized financial (7, 15%), ethical (5, 11%), and emotional (8, 17%) challenges.emotional (8, 17%) challenges.


ParenthoodParenthood

Women were asked to rate the Women were asked to rate the importance of importance of being a parent in their lives being a parent in their lives on on a scale from 0 to 10 a scale from 0 to 10 (not at all (not at all important to most important). The important to most important). The mean mean score was 9.4score was 9.4. .

Thirty-three women Thirty-three women (67%) (67%) rated rated parenthood as having the most parenthood as having the most importanceimportance. .


Social support/disclosureSocial support/disclosure ‘‘ ‘‘Who do you feel most comfortable with talking Who do you feel most comfortable with talking

about your loss of fertility?’’:about your loss of fertility?’’: family/friends (35 out of 48, 71%); partner (24 out of family/friends (35 out of 48, 71%); partner (24 out of

49, 49%); women with similar medical issues (17 out 49, 49%); women with similar medical issues (17 out of 49, 35%); and doctors (6 out of 49, 12%)of 49, 35%); and doctors (6 out of 49, 12%). .

Participants’ perceived reactions Participants’ perceived reactions from others from others included positive/supportive (28, 56%), mixed (13, included positive/supportive (28, 56%), mixed (13, 26%), not understanding of their situation (1, 2%), or 26%), not understanding of their situation (1, 2%), or they chose not to tell others (7, 14%).they chose not to tell others (7, 14%).


InformationInformation

Participants were asked Participants were asked to provide information to provide information on how they heard about reproductive options on how they heard about reproductive options (i.e., egg retrieval, egg donation, and/or (i.e., egg retrieval, egg donation, and/or surrogacy). surrogacy).

Sources included [1] Sources included [1] doctor/medical doctor/medical professionals professionals (31, 62%), [2] reading/research (31, 62%), [2] reading/research (20, 40%), [3] media/ Internet (16, 32%), [4] (20, 40%), [3] media/ Internet (16, 32%), [4] family/friends (13, 26%), and [5] family/friends (13, 26%), and [5] general/common knowledge (6, 12%).general/common knowledge (6, 12%).


Quality of life )QOL(Quality of life )QOL(

Meaning of QOL, current QOL, and impact of Meaning of QOL, current QOL, and impact of parenthood and fertility on the QOL of participants: parenthood and fertility on the QOL of participants: The majority defined QOL as having social support, The majority defined QOL as having social support, health, and happiness. health, and happiness.

Twenty-two women (45%) viewed their current QOL Twenty-two women (45%) viewed their current QOL as positive, and 21 (43%) as negative.as positive, and 21 (43%) as negative.

Parenthood and fertility could both positively Parenthood and fertility could both positively influence QOL (24, 49%) by providing an important influence QOL (24, 49%) by providing an important factor or goal and meaning to one’s life, and negatively factor or goal and meaning to one’s life, and negatively impact QOL (23, 47%) and create stress (10, 20%).impact QOL (23, 47%) and create stress (10, 20%).


Quality of life )QOL(Quality of life )QOL(


DISCUSSIONDISCUSSION

The The results support the limited research results support the limited research showing that women awaiting showing that women awaiting oocyte donation oocyte donation experienceexperience emotionalemotional (7, 11, 41), sexual (7, 11, 41), sexual (17, 42), (17, 42), and QOL (15, 16) impairments. and QOL (15, 16) impairments.

A third of participants had clinical levels of A third of participants had clinical levels of depression, half had high levels of distress, and depression, half had high levels of distress, and two-thirds had poor mental QOL. two-thirds had poor mental QOL.


DISCUSSION )cont(DISCUSSION )cont(

Patients had excellent physical QOL, but somatic Patients had excellent physical QOL, but somatic symptoms of insomnia, headache, and symptoms of insomnia, headache, and gastrointestinal distress were revealed on the gastrointestinal distress were revealed on the Menopausal Symptom Checklist; these symptoms Menopausal Symptom Checklist; these symptoms appear to be appear to be more associated with stress more associated with stress than than menopause. menopause.

Psycho educational interventions Psycho educational interventions for infertile patients for infertile patients (43) have targeted such symptoms, with notable (43) have targeted such symptoms, with notable improvement in coping and conception (17, 44). improvement in coping and conception (17, 44).


DISCUSSION )cont(DISCUSSION )cont(

Reproductive concerns were noted on the RCS and Reproductive concerns were noted on the RCS and within the qualitative data. within the qualitative data.

women expressed concern about the women expressed concern about the impact of impact of reproductive treatment on their bodyreproductive treatment on their body, specific to , specific to long-term effects and cancer risk. Many of the long-term effects and cancer risk. Many of the women described reproductive treatment as a women described reproductive treatment as a ‘‘roller coaster’’ ‘‘roller coaster’’ experience of highs and lows (17). experience of highs and lows (17).

Almost all women expressed Almost all women expressed feelings of gratitude feelings of gratitude and thankfulness for these family-building options and thankfulness for these family-building options and their infertility treatment decisions. and their infertility treatment decisions.


DISCUSSION )cont(DISCUSSION )cont( Most women indicated relationship satisfaction, Most women indicated relationship satisfaction,

which was not surprising considering almost half which was not surprising considering almost half indicated their partner as their preferred confidant. indicated their partner as their preferred confidant.

Social support Social support was also viewed to be an essential was also viewed to be an essential factor for having QOL, as well as factor for having QOL, as well as health and health and happiness. happiness.

ParenthoodParenthood was rated as extremely important and was rated as extremely important and as a significant goal needed to achieve QOL.as a significant goal needed to achieve QOL.


LimitationsLimitations Sample size was smallSample size was small; the findings should not be generalized. ; the findings should not be generalized. Sample Sample selection was contingent selection was contingent on all infertile women being on all infertile women being

appropriate candidates , but it was unclear as to the extent of appropriate candidates , but it was unclear as to the extent of prior reproductive treatments before choosing oocyte prior reproductive treatments before choosing oocyte donation for conception or the duration of time on the wait donation for conception or the duration of time on the wait list. (list. (Participation rate (74%) Participation rate (74%) was high, an accurate was high, an accurate representation).representation).

As with any self-report survey, concern As with any self-report survey, concern about potential bias about potential bias exists; however, due to the exploratory nature of the study, we exists; however, due to the exploratory nature of the study, we feel self-report data collection was the ideal method. feel self-report data collection was the ideal method.

Our sample also Our sample also lacked diversitylacked diversity, as the majority of the women , as the majority of the women identified themselves as white, non-Hispanic, and highly identified themselves as white, non-Hispanic, and highly educated. (consistent with study populations investigating educated. (consistent with study populations investigating participants of IVF (47) and oocyte donation (48).participants of IVF (47) and oocyte donation (48).


CONCLUSIONSCONCLUSIONS

Infertile women hoping to use a donor Infertile women hoping to use a donor oocyte for future conception. oocyte for future conception.

Distress levels and exhibited somatic Distress levels and exhibited somatic complaints would be ideal targets for future complaints would be ideal targets for future intervention to assist women in coping and intervention to assist women in coping and managing the waiting period for oocyte managing the waiting period for oocyte donation.donation.


Conclusions )cont(Conclusions )cont(

Infertility can negatively impact sexual Infertility can negatively impact sexual function, QOL, and emotional well-being. function, QOL, and emotional well-being.

Quantitative empirical measures and Quantitative empirical measures and qualitative data have shown that these qualitative data have shown that these women experienced and recognized the women experienced and recognized the emotional toll of reproductive assistance.emotional toll of reproductive assistance.

Despite concerns about the long-term effects Despite concerns about the long-term effects of treatment, participants were grateful for of treatment, participants were grateful for this third-party parenting option. this third-party parenting option.


End of the PaperEnd of the Paper


Quality of Life in Infertile PeopleQuality of Life in Infertile People

The quality of life for some infertile people can The quality of life for some infertile people can become marginal when they have difficulty become marginal when they have difficulty coping with a friend’s pregnancy, seeing babies coping with a friend’s pregnancy, seeing babies and young childrenand young children or watching television or watching television advertisements featuring babies. advertisements featuring babies.

Events such as Events such as Nowrouz, Christmas, Mother’s Nowrouz, Christmas, Mother’s Day and Father’s Day can be painful reminders Day and Father’s Day can be painful reminders of other people’s fertility and successof other people’s fertility and success. Many . Many couples do not participate in these family couples do not participate in these family celebrations.celebrations.

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Infertility SorrowInfertility Sorrow

infertility has been more infertility has been more aptly described as a model of aptly described as a model of ‘chronic sorrow’ ‘chronic sorrow’

(Unruh and McGrath, 1985 in Woods (Unruh and McGrath, 1985 in Woods et al., 1991)et al., 1991)


A Tragic Story of InfertilityA Tragic Story of Infertility

In 1993, the London newspaper, the In 1993, the London newspaper, the Daily MailDaily Mailreported on the 15th birthday of “Bubbly Louise”reported on the 15th birthday of “Bubbly Louise”(Brown), the world’s first baby born through IVF (Brown), the world’s first baby born through IVF ..

A few pages away appeared a story headlined A few pages away appeared a story headlined TragicTragicteacher who longed for a baby. teacher who longed for a baby. Gillian Martine, a 34-Gillian Martine, a 34-year-old primary schoolteacher year-old primary schoolteacher

from South Hampton and her husband Michael, after from South Hampton and her husband Michael, after trying to conceive for some years, had been told by trying to conceive for some years, had been told by their doctors the heartbreaking news that they would their doctors the heartbreaking news that they would never have a child. Depressed and discouraged, Gillian never have a child. Depressed and discouraged, Gillian committed committed Suicide. Suicide.

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The emergence of patient support networks The emergence of patient support networks worldwideworldwide

Like any Like any life crisislife crisis, infertility can be best , infertility can be best understood by those who have experienced it. understood by those who have experienced it.

Therefore, Therefore, infertility self-help groups infertility self-help groups play an play an invaluable role, as there is comfort in speaking invaluable role, as there is comfort in speaking with someone who really understands. with someone who really understands.

Many infertility self-help groups have been Many infertility self-help groups have been establishedestablished around the world since the early around the world since the early 1980s1980s..

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RecommendationsRecommendations

3 key issues are considerable in Infertility 3 key issues are considerable in Infertility interventions:interventions:

• InformationInformation• SupportSupport• PreventionPrevention

Policies and appropriate supportsPolicies and appropriate supports

A Holistic Approach and Public Health ViewA Holistic Approach and Public Health View


• A A dandeliondandelion is a is a universal symbol for fertility universal symbol for fertility - the dozens of seeds - the dozens of seeds released by each flower released by each flower head represent fertility and head represent fertility and abundance. The seeds’ abundance. The seeds’ journey illustrates a time of journey illustrates a time of letting go, of starting letting go, of starting something newsomething new


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