Protocol - Fertility and Quality of Life
- Family Conflict - Intimate-Relationship
- Sexual Function and Satisfaction - Female
- Sexual Function and Satisfaction - Male
- Sexual Orientation
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
This protocol is freely available; permission not required for use.
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 Category | Required |
|---|---|
| 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
| Standard | Name | ID | Source |
|---|
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 ID | Variable Description | dbGaP 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 | N/A | ||
| PX880501_Fertility_Quality_Of_Life_Complicated_Dealing_With_Procedure_Administration_Medication_Treatment | ||||
| PX880501290000 | How complicated is dealing with the more | N/A | ||
| PX880501_Fertility_Quality_Of_Life_Content_Relationship | ||||
| PX880501230000 | Are you content with your relationship even more | N/A | ||
| PX880501_Fertility_Quality_Of_Life_Feel_Drained_Worn_Out | ||||
| PX880501050000 | Do you feel drained or worn out because of more | N/A | ||
| PX880501_Fertility_Quality_Of_Life_Feel_Staff_Understand | ||||
| PX880501310000 | Do you feel the fertility staff understand more | N/A | ||
| PX880501_Fertility_Quality_Of_Life_Feel_Uncomfortable_Attending_Social_Situations | ||||
| PX880501150000 | Do you feel uncomfortable attending social more | N/A | ||
| PX880501_Fertility_Quality_Of_Life_Fluctuate_Between_Hope_Despair | ||||
| PX880501110000 | Do you fluctuate between hope and despair more | N/A | ||
| PX880501_Fertility_Quality_Of_Life_Inferior_To_People_With_Children | ||||
| PX880501190000 | Do your fertility problems make you inferior more | N/A | ||
| PX880501_Fertility_Quality_Of_Life_Negative_Impact_Relationship_Partner | ||||
| PX880501210000 | Have fertility problems had a negative more | N/A | ||
| PX880501_Fertility_Quality_Of_Life_Partner_Affectionate_With_Each_Other | ||||
| PX880501130000 | Are you and your partner affectionate with more | N/A | ||
| PX880501_Fertility_Quality_Of_Life_Problems_Cause_Jealousy_Resentment | ||||
| PX880501090000 | Do your fertility problems cause feelings of more | 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 | N/A | ||
| PX880501_Fertility_Quality_Of_Life_Satisfied_Services_Available_Address_Emotional_Needs | ||||
| PX880501330000 | Are you satisfied with the quality of more | N/A | ||
| PX880501_Fertility_Quality_Of_Life_Satisfied_Support_Receive_From_Friends | ||||
| PX880501070000 | Are you satisfied with the support you more | N/A | ||
| PX880501_Fertility_Quality_Of_Life_Strengthened_Commitment_To_Partner | ||||
| PX880501170000 | Have fertility problems strengthened your more | N/A | ||
| PX880501_Fertility_Quality_Of_Life_Treatment_Negatively_Affect_Mood | ||||
| PX880501270000 | Does infertility treatment negatively affect more | N/A | ||
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 |