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Protocol - Fertility and Quality of Life

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Description

The FertiQoL (Fertility Quality of Life tool) is a 34-item, self-administered questionnaire that assesses the influences of fertility on general health, self-perceptions, emotions, partnerships, family and social relationships, work life and future life plans. Each question is rated on a 5-point Likert-style scale that varies by section (e.g., “Very Poor” to “Very Good” or “Always” to “Never”).

Specific Instructions

The Sickle Cell Disease Genitourinary Working Group notes some questions in this assessment are sensitive. Investigators should provide a private space for completing assessments and to be prepared to offer appropriate support.

Availability

Available

Protocol

FertiQoL International

Fertility Quality of Life Questionnaire (2008)
For each question, kindly check (tick the box) for the response that most closely reflects how you think and feel.
Relate your answers to your current thoughts and feelings. Some questions may relate to your private life, but they are necessary to adequately measure all aspects of your life.
Please complete the items marked with an asterisk (*) only if you have a partner.

For each question, check the response that is closest to your current thoughts and feelings. Very Poor Poor Neither Good nor Poor Good Very Good
A. How would you rate your health? [ ] [ ] [ ] [ ] [ ]
For each question, check the response that is closest to your current thoughts and feelings Very Dissatisfied Dissatisfied Neither Satisfied Nor Dissatisfied Satisfied Very Satisfied
B. Are you satisfied with your quality of life? [ ] [ ] [ ] [ ] [ ]
For each question, check the response that is closest to your current thoughts and feelings Completely A Great Deal Moderately Not Much Not At All
Q1. Are your attention and concentration impaired by thoughts of infertility? [ ] [ ] [ ] [ ] [ ]
Q2. Do you think you cannot move ahead with other life goals and plans because of fertility problems? [ ] [ ] [ ] [ ] [ ]
Q3. Do you feel drained or worn out because of fertility problems? [ ] [ ] [ ] [ ] [ ]
Q4. Do you feel able to cope with your fertility problems? [ ] [ ] [ ] [ ] [ ]
For each question, check the response that is closest to your current thoughts and feelings Very Dissatisfied Dissatisfied Neither Satisfied Nor Dissatisfied Satisfied Very Satisfied
Q5. Are you satisfied with the support you receive from friends with regard to your fertility problems? [ ] [ ] [ ] [ ] [ ]
*Q6. Are you satisfied with your sexual relationship even though you have fertility problems? [ ] [ ] [ ] [ ] [ ]
For each question, check the response that is closest to your current thoughts and feelings Always Very Often Quite Often Seldom Never
Q7. Do your fertility problems cause feelings of jealousy and resentment? [ ] [ ] [ ] [ ] [ ]
Q8. Do you experience grief and/or feelings of loss about not being able to have a child (or more children)? [ ] [ ] [ ] [ ] [ ]
Q9. Do you fluctuate between hope and despair because of fertility problems? [ ] [ ] [ ] [ ] [ ]
Q10. Are you socially isolated because of fertility problems? [ ] [ ] [ ] [ ] [ ]
Q11. Are you and your partner affectionate with each other even though you have fertility problems? [ ] [ ] [ ] [ ] [ ]
Q12. Do your fertility problems interfere with your day-to-day work or obligations? [ ] [ ] [ ] [ ] [ ]
Q13. Do you feel uncomfortable attending social situations like holidays and celebrations because of your fertility problems? [ ] [ ] [ ] [ ] [ ]
Q14. Do you feel your family can understand what you are going through? [ ] [ ] [ ] [ ] [ ]
For each question, check the response that is closest to your current thoughts and feelings An Extreme Amount Very Much A Moderate Amount A Little Not At All
*Q15. Have fertility problems strengthened your commitment to your partner? [ ] [ ] [ ] [ ] [ ]
Q16. Do you feel sad and depressed about your fertility problems? [ ] [ ] [ ] [ ] [ ]
Q17. Do your fertility problems make you inferior to people with children? [ ] [ ] [ ] [ ] [ ]
Q18. Are you bothered by fatigue because of fertility problems? [ ] [ ] [ ] [ ] [ ]
*Q19. Have fertility problems had a negative impact on your relationship with your partner? [ ] [ ] [ ] [ ] [ ]
*Q20. Do you find it difficult to talk to your partner about your feelings related to infertility? [ ] [ ] [ ] [ ] [ ]
*Q21 Are you content with your relationship even though you have fertility problems? [ ] [ ] [ ] [ ] [ ]
Q22. Do you feel social pressure on you to have (or have more) children? [ ] [ ] [ ] [ ] [ ]
Q23. Do your fertility problems make you angry? [ ] [ ] [ ] [ ] [ ]
Q24. Do you feel pain and physical discomfort because of your fertility problems? [ ] [ ] [ ] [ ] [ ]

FertiQoL International

Optional Treatment Module
Have you started fertility treatment (this includes any medical consultation or intervention)? If Yes, then please respond to the following questions. For each question, kindly check (tick the box) for the response that most closely reflects how you think and feel. Relate your answers to your current thoughts and feelings. Some questions may relate to your private life, but they are necessary to adequately measure all aspects of your life.

For each question, check the response that is closest to your current thoughts and feelings Always Very Often Quite Often Seldom Never
T1. Does infertility treatment negatively affect your mood? [ ] [ ] [ ] [ ] [ ]
T2. Are the fertility medical services you would like available to you? [ ] [ ] [ ] [ ] [ ]

For each question, check the response that is closest to your current thoughts and feelings An Extreme Amount Very Much A Moderate Amount A Little Not At All
T3. How complicated is dealing with the procedure and/ or administration of medication for your infertility treatment(s)? [ ] [ ] [ ] [ ] [ ]
T4. Are you bothered by the effect of treatment on your daily or work related activities? [ ] [ ] [ ] [ ] [ ]
T5. Do you feel the fertility staff understand what you are going through? [ ] [ ] [ ] [ ] [ ]
T6.

Are you bothered by the physical side effects of fertility medications and treatment?

[ ] [ ] [ ] [ ] [ ]

For each question, check the response that is closest to your current thoughts and feelings Very Dissatisfied Dissatisfied Neither Satisfied Nor Dissatisfied Satisfied Very Satisfied
T7. Are you satisfied with the quality of services available to you to address your emotional needs?
T8. How would you rate the surgery and/or medical treatment(s) you have received?
T9. How would you rate the quality of information you received about medication, surgery and/or medical treatment?
T10. Are you satisfied with your interactions with fertility medical staff?

© European Society of Human Reproduction & Embryology and American Society of Reproductive Medicine

Personnel and Training Required

None

Equipment Needs

None

Requirements
Requirement CategoryRequired
Major equipment No
Specialized training No
Specialized requirements for biospecimen collection No
Average time of greater than 15 minutes in an unaffected individual No
Mode of Administration

Self-administered questionnaire

Lifestage

Adult

Participants

Adult

Selection Rationale

FertiQOL is an internationally validated tool that measures quality of life in people experiencing fertility problems and how these problems impact aspects of life, including the ability to have relationships.

Language

Chinese, English, Spanish, Other languages available at source

Standards
StandardNameIDSource
Derived Variables

None

Process and Review

Not applicable

Protocol Name from Source

FertiQoL (Fertility Quality of Life tool)

Source

Boivin, J., Takefman, J., & Braverman, A. (2011). The fertility quality of life (FertiQoL) tool: Development and general psychometric properties. Human Reproduction, 26(8), 2084-2091. http://dx.doi.org/10.1093%2Fhumrep%2Fder171

General References

Aarts, J. W. M., Huppelschoten, A. G., van Empel, I. W. H., Boivin, J., Verhaak, J. A. M., Kremer, J. A. M., & Nelen, W. L. (2012). How patient-centred care relates to patients’ quality of life and distress: A study in 427 women experiencing infertility. Human Reproduction, 27(2), 488–495. https://doi.org/10.1093/humrep/der386

Aarts, J. W. M., van Empel, I. W. H., Boivin, J., Nelen, W. L., Kremer, J. A. M., & Verhaak C. M. (2011). Relationship between quality of life and distress in infertility: A validation study of the Dutch FertiQoL. Human Reproduction, 26(5), 1112–1118. https://doi.org/10.1093/humrep/der051

Asazawa, K. (2015). Effects of a partnership support program for couples undergoing fertility treatment. Japan Journal of Nursing Science, 12(4), 354–366. https://doi.org/10.1111/jjns.12074 

Borm, G. F., Teerenstra, S., & Zielhuis, G. A. (2008). Objective and perspective determine the choice of composite endpoint. Journal of Clinical Epidemiology, 61(2), 99–101. https://doi.org/10.1016/j.jclinepi.2007.10.001

Cserepes, R. E., K?rösi, T & Bugán, A. (2014). Characteristics of infertility-specific quality of life in Hungarian couples. Orvosi Hetilap, 155(20), 783–788. https://doi.org/10.1556/oh.2014.29867 

Domar, A. D., Gross, J., Rooney, K., & Boivin, J. (2015). Exploratory randomized trial on the effect of a brief psychological intervention on emotions, quality of life, discontinuation, and pregnancy rates in in vitro fertilization patients. Fertility and Sterility, 104(2), 440–451. https://doi.org/10.1016/j.fertnstert.2015.05.009 

Gameiro, S., Canavarro, M.C. & Boivin, J. (2013). Patient centred care in infertility health care: Direct and indirect associations with wellbeing during treatment. Patient Education and Counselling, 93(3), 646–654. https://doi.org/10.1016/j.pec.2013.08.015

Guerra, D., Llorens, I. & Ballesteros A. (2012). Evaluacion de calidad de vida en reproduccion asistida. Cuadernos de Medicine Reproductiva. In Garcia-Velasco, J.A., Guerra, D. (Eds.) Special issue: Psicologia y Reproduccion Asistida, 18(1).

Heredia, M., Tenías, J. M., Rocio, R., Amparo, F., Calleja, M. A. & Valenzuela, J. C. (2013). Quality of life and predictive factors in patients undergoing assisted reproduction techniques. European Journal of Obstetrics & Gynecology and Reproductive Biology,167(2), 176–180. https://doi.org/10.1016/j.ejogrb.2012.12.011

Holter, H., Sandin-Bojö, A-K., Gejervall, A-L., Wikland, M., Wilde-Larsson, B., & Bergh, C. (2014). Quality of care in an IVF programme from a patient’s perspective: Development of a validated instrument. Human Reproduction, 29(3), 534–547. https://doi.org/10.1093/humrep/det421 

Hsu, P-Y., Lin, M-W., Hwang, J-L., Lee, M-S., & Wu, M-H. (2013). The fertility quality of life (FertiQoL) questionnaire in Taiwanese infertile couples. Taiwanese Journal of Obstetrics and Gynecology, 52(2), 204–209. https://doi.org/10.1016/j.tjog.2013.04.009

Huppelschoten, A. G., van Dongen, A. J. C. M., Philipse, I. C. P., Hamilton, C. J. C. M., Verhaak, C. M., Nelen, W. L. D. M., & Kremer, J. A. M. (2013). Predicting dropout in fertility care: A longitudinal study on patient-centredness. Human Reproduction, 28(8), 2177–2186. https://doi.org/10.1093/humrep/det236

Kahyaoglu Sut, H., & Kaplan, P. B. (2015). Quality of life in women with infertility via the FertiQoL and the Hospital Anxiety and Depression Scales. Nursing & Health Sciences, 17(1), 84–89. https://doi.org/10.1111/nhs.12167

Karabulut, A., Özkan, S., & O?uz, N. (2013). Predictors of fertility quality of life (FertiQoL) in infertile women: Analysis of confounding factors. European Journal of Obstetrics & Gynecology and Reproductive Biology, 170(1), 193–197. https://doi.org/10.1016/j.ejogrb.2013.06.029

Kim, J. H., & Shin, H. S. (2013). A structural model for quality of life of infertile women. Journal of Korean Academy of Nursing, 43(3), 312–320. https://doi.org/10.4040/jkan.2013.43.3.312 

Lopes, V., Canavarro, M. C., Verhaak, C. M., Boivin, J., & Gameiro, S. (2014). Are patients at risk for psychological maladjustment during fertility treatment less willing to comply with treatment? Results from the Portuguese validation of the SCREENIVF. Human Reproduction, 29(2), 293–302. https://doi.org/10.1093/humrep/det418

Melo, C., Gameiro, S. Canavarro, M.C. & Boivin, J. (2012). Does the FertiQoL assess quality of life? Results from the validation of the Portuguese version of the FertiQoL. Human Reproduction, 27(Suppl. 2). https://doi.org/10.1093/humrep/27.s2.85

Ockhuijsen, H. D. L., van den Hoogen, A., Macklon, N. S., & Boivin, J. (2013). The PRCI study: Design of a randomized clinical trial to evaluate a coping intervention for medical waiting periods used by women undergoing a fertility treatment. BMC Women’s Health, 13, 35. https://doi.org/10.1186/1472-6874-13-35 

Pedro, J., Canavarro, M. C., Boivin, J., & Gameiro, S. (2013). Positive experiences of patient-centred care are associated with intentions to comply with fertility treatment: Findings from the validation of the Portuguese version of the PCQ-Infertility tool. Human Reproduction, 28(9), 2462–2472. https://doi.org/10.1093/humrep/det259

Valsangkar, S., Bodhare T., Bele, S., & Sai, S. (2011). An evaluation of the effect of infertility on marital, sexual satisfaction indices and health-related quality of life in women. Journal of Human Reproduction, 4(2), 80–85. https://doi.org/10.4103/0974-1208.86088 

van Empel, I. W. H., Aarts, J. W. M., Cohlen, B. J., Huppelschoten, D. A., Laven, J. S. E., Nelen, W. L. D. M., & Kremer, J. A. M. (2010). Measuring patient-centredness, the neglected outcome in fertility care: A random multicentre validation study. Human Reproduction, 25(10), 2516–2526. https://doi.org/10.1093/humrep/deq219

van Empel, I. W. H., Hermens, R. P. M. G., Akkermans, R. P., Hollander, K. W. P., Nelen, W. L. D. M., & Kremer, J. A. M. (2011). Organizational determinants of patient-centered fertility care: A multilevel analysis. Fertility and Sterility, 95(2), 513–519. https://doi.org/10.1016/j.fertnstert.2010.08.021

Protocol ID

880501

Variables
Export Variables
Variable Name Variable IDVariable DescriptiondbGaP Mapping
PX880501_Fertility_Quality_Of_Life_Angry
PX880501250000 Do your fertility problems make you angry? N/A
PX880501_Fertility_Quality_Of_Life_Attention_Concentration_Impaired_By_Thoughts
PX880501030000 Are your attention and concentration more
impaired by thoughts of infertility? show less
N/A
PX880501_Fertility_Quality_Of_Life_Bothered_Effect_Treatment_Daily_Work_Activities
PX880501300000 Are you bothered by the effect of treatment more
on your daily or work related activities? show less
N/A
PX880501_Fertility_Quality_Of_Life_Bothered_Fatigue
PX880501200000 Are you bothered by fatigue because of more
fertility problems? show less
N/A
PX880501_Fertility_Quality_Of_Life_Bothered_Physical_Side_Effects_Medication_Treatment
PX880501320000 Are you bothered by the physical side more
effects of fertility medications and treatment? show less
N/A
PX880501_Fertility_Quality_Of_Life_Cannot_Move_Ahead_Other_Life_Goals
PX880501040000 Do you think you cannot move ahead with more
other life goals and plans because of fertility problems? show less
N/A
PX880501_Fertility_Quality_Of_Life_Complicated_Dealing_With_Procedure_Administration_Medication_Treatment
PX880501290000 How complicated is dealing with the more
procedure and/ or administration of medication for your infertility treatment(s)? show less
N/A
PX880501_Fertility_Quality_Of_Life_Content_Relationship
PX880501230000 Are you content with your relationship even more
though you have fertility problems? show less
N/A
PX880501_Fertility_Quality_Of_Life_Difficult_Talk_Partner_Feelings
PX880501220000 Do you find it difficult to talk to your more
partner about your feelings related to infertility? show less
N/A
PX880501_Fertility_Quality_Of_Life_Experience_Grief_Feelings_Loss_Not_Able_Have_Child
PX880501100000 Do you experience grief and/or feelings of more
loss about not being able to have a child (or more children)? show less
N/A
PX880501_Fertility_Quality_Of_Life_Feel_Able_Cope
PX880501060000 Do you feel able to cope with your fertility more
problems? show less
N/A
PX880501_Fertility_Quality_Of_Life_Feel_Drained_Worn_Out
PX880501050000 Do you feel drained or worn out because of more
fertility problems? show less
N/A
PX880501_Fertility_Quality_Of_Life_Feel_Family_Understand
PX880501160000 Do you feel your family can understand what more
you are going through? show less
N/A
PX880501_Fertility_Quality_Of_Life_Feel_Pain_Physical_Discomfort
PX880501260000 Do you feel pain and physical discomfort more
because of your fertility problems? show less
N/A
PX880501_Fertility_Quality_Of_Life_Feel_Sad_Depressed
PX880501180000 Do you feel sad and depressed about your more
fertility problems? show less
N/A
PX880501_Fertility_Quality_Of_Life_Feel_Social_Pressure_Have_Children
PX880501240000 Do you feel social pressure on you to have more
(or have more) children? show less
N/A
PX880501_Fertility_Quality_Of_Life_Feel_Staff_Understand
PX880501310000 Do you feel the fertility staff understand more
what you are going through? show less
N/A
PX880501_Fertility_Quality_Of_Life_Feel_Uncomfortable_Attending_Social_Situations
PX880501150000 Do you feel uncomfortable attending social more
situations like holidays and celebrations because of your fertility problems? show less
N/A
PX880501_Fertility_Quality_Of_Life_Fluctuate_Between_Hope_Despair
PX880501110000 Do you fluctuate between hope and despair more
because of fertility problems? show less
N/A
PX880501_Fertility_Quality_Of_Life_Inferior_To_People_With_Children
PX880501190000 Do your fertility problems make you inferior more
to people with children? show less
N/A
PX880501_Fertility_Quality_Of_Life_Interfere_Day_Work_Obligations
PX880501140000 Do your fertility problems interfere with more
your day-to-day work or obligations? show less
N/A
PX880501_Fertility_Quality_Of_Life_Medical_Services_Available
PX880501280000 Are the fertility medical services you would more
like available to you? show less
N/A
PX880501_Fertility_Quality_Of_Life_Negative_Impact_Relationship_Partner
PX880501210000 Have fertility problems had a negative more
impact on your relationship with your partner? show less
N/A
PX880501_Fertility_Quality_Of_Life_Partner_Affectionate_With_Each_Other
PX880501130000 Are you and your partner affectionate with more
each other even though you have fertility problems? show less
N/A
PX880501_Fertility_Quality_Of_Life_Problems_Cause_Jealousy_Resentment
PX880501090000 Do your fertility problems cause feelings of more
jealousy and resentment? show less
N/A
PX880501_Fertility_Quality_Of_Life_Rate_Health
PX880501010000 How would you rate your health? N/A
PX880501_Fertility_Quality_Of_Life_Rate_Information_Received_About_Medication_Surgery_Treatment
PX880501350000 How would you rate the quality of more
information you received about medication, surgery and/or medical treatment? show less
N/A
PX880501_Fertility_Quality_Of_Life_Rate_Surgery_Medical_Treatment
PX880501340000 How would you rate the surgery and/or more
medical treatment(s) you have received? show less
N/A
PX880501_Fertility_Quality_Of_Life_Satisfied
PX880501020000 Are you satisfied with your quality of life? N/A
PX880501_Fertility_Quality_Of_Life_Satisfied_Interactions_Medical_Staff
PX880501360000 Are you satisfied with your interactions more
with fertility medical staff? show less
N/A
PX880501_Fertility_Quality_Of_Life_Satisfied_Services_Available_Address_Emotional_Needs
PX880501330000 Are you satisfied with the quality of more
services available to you to address your emotional needs? show less
N/A
PX880501_Fertility_Quality_Of_Life_Satisfied_Sexual_Relationship
PX880501080000 Are you satisfied with your sexual more
relationship even though you have fertility problems? show less
N/A
PX880501_Fertility_Quality_Of_Life_Satisfied_Support_Receive_From_Friends
PX880501070000 Are you satisfied with the support you more
receive from friends with regard to your fertility problems? show less
N/A
PX880501_Fertility_Quality_Of_Life_Socially_Isolated
PX880501120000 Are you socially isolated because of more
fertility problems? show less
N/A
PX880501_Fertility_Quality_Of_Life_Strengthened_Commitment_To_Partner
PX880501170000 Have fertility problems strengthened your more
commitment to your partner? show less
N/A
PX880501_Fertility_Quality_Of_Life_Treatment_Negatively_Affect_Mood
PX880501270000 Does infertility treatment negatively affect more
your mood? show less
N/A
SCD Genitourinary
Measure Name

Fertility and Quality of Life

Release Date

August 15, 2023

Definition

This measure assesses the impact that fertility problems are currently having on quality of life.

Purpose

This measure can be used to understand the impact that fertility problems are having on the individual’s feelings and their social and partner relationships.

Keywords

sickle cell disease, FertiQoL (Fertility Quality of Life tool), fertility problems, health, quality of life, satisfied, infertility

Measure Protocols
Protocol ID Protocol Name
880501 Fertility and Quality of Life
Publications

There are no publications listed for this protocol.