Protocol - Fertility and Quality of Life

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 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.