FertiQoL Tool Description
ESHRE, ASRM and Merck-Serono S.A. joined forces in June 2002 to develop the first internationally validated QoL instrument that surveys infertile patients to assess their quality of life.
Creation of item pool
35 experts based in 8 countries and from various professions (researchers, psychologists, social workers, counsellors, patient user groups, gynecologists, nurses), generated a set of 300 items identifying life domains affected by fertility problems.
This list was reduced to 116 items after many rounds of expert consultation.
Focus groups were organized to validate the items generated by the experts against a patient's perspective. These groups were also used to uncover important areas or specific issues which men and women may encounter or experience during infertility overlooked by the experts. These groups were run in several countries.
Content analysis of focus groups and elaboration of first FertiQoL questionnaire
The concepts expressed during the focus groups were examined in terms of frequency distributions. Items endorsed by less than 50% of the groups were eliminated from the item list. On the other hand, new facets were identified through the focus groups, and those facets endorsed by more than 50% of the participants were incorporated into the item list. Some phrases were also amended to correct gender bias or to improve specificity. Redundancies were removed.
The first draft of the FertiQoL questionnaire consisted of 102 questions divided into 4 domains (Overall, Personal, Interpersonal and Healthcare) and 9 dimensions (Affect, Psychological, Physical, Spiritual beliefs and values, Partner relationship, Social network, Occupational/work, Medical and Psychoeducational).
The acceptability phase was performed in USA, UK, Canada, France, Italy, Greece, Spain, Germany, the Netherlands and Sweden. Translation from English into the target language was organised through a forward and backward process by skilled translators with a final check of the wording performed by the main clinical investigator from each country.
The first draft of FertiQoL was distributed to 1400 people with fertility problems: 400 people in fertility clinics in 5 countries and 1000 people online. Statistical analyses were carried out to establish fit between the proposed and observed FertiQoL factor structure, the reliability of items and their sensitivity. The final wording was tested on a further independent sample of people with fertility problems and this version is the final version of FertiQoL translated into 22 languages.