| Literature DB >> 21458806 |
Jacky Boivin1, Janet Takefman, Andrea Braverman.
Abstract
OBJECTIVE: To develop the first international instrument to measure fertility quality of life, FertiQoL, in men and women experiencing fertility problems, to evaluate the preliminary psychometric properties of this new tool and to translate FertiQoL into multiple languages.Entities:
Mesh:
Year: 2011 PMID: 21458806 PMCID: PMC7094343 DOI: 10.1016/j.fertnstert.2011.02.046
Source DB: PubMed Journal: Fertil Steril ISSN: 0015-0282 Impact factor: 7.490
Steps in FertiQoL item generation, selection, and reduction carried out before this psychometric evaluation.
| Task and aim | Participants | Materials | Outcome |
|---|---|---|---|
| Literature review and expert consultation to generate potential items | Psychosocial experts in reproductive health (n = 17) | Psychosocial studies | 302 items in 14 domains (e.g., partnership, self-esteem, career) |
| Classification and reduction of item pool to eliminate redundant or irrelevant items or rare QoL effects | FertiQoL technical working group (Boivin, Takefman, Braverman) and expert panel | WHO selection criteria: items should be revealing of QoL, cover key domains, use simple language, ask about single issues, be free of ambiguity, etc. | Item pool reduced to 116 items |
| Focus groups with patients to validate the items generated by the experts and uncover any effects overlooked by the experts | 17 focus groups (n = 136 participants): Canada, Germany, Mexico, USA, Italy | Structured interview guide (facilitators), workbooks (participants), and 116-item pool FertiQoL | Item decrease from 116 to 102 (22 items eliminated and 8 added) based on > or <50% endorsement |
| Survey to assess acceptability and feasibility of FertiQoL item style in different languages | n = 525 men and women in 10 countries: Argentina (n = 48), Brazil (n = 96), Canada (n = 59), France (n = 63), Germany (n = 37), Greece (n = 32), Italy (n = 47), Mexico (n = 46), New Zealand (n = 11), Spain (n = 43), UK (n = 79) and USA (n = 43) | 102 Core FertiQoL + 27 optional Treatment items | Final Core FertiQol pool for psychometric phase was 102 items + 27 optional Treatment items |
Note: FertiQoL technical working group involved in all aspects of project development. QoL = quality of life; WHO = World Health Organization.
Focus groups in Singapore canceled owing to the severe acute respiratory syndrome virus.
Demographic characteristics of the online and clinic samples.a
| Variable | Online (n = 1,048) | Clinic (n = 366) | Test statistic (χ2 or |
|---|---|---|---|
| Demographics | |||
| Age (y), mean (SD) | 32.9 (4.9) | 35.2 (4.0) | 7.9 |
| Women, % (n) | 96.8 (1014) | 79.5 (291) | 113.4 |
| Relationship status, % (n) | 49.4 | ||
| Single | .2 (3) | 4.0 (13) | |
| In stable relationship | |||
| Same-sex | 1.7 (18) | 6.2 (20) | |
| Heterosexual | 98.0 (1027) | 89.8 (289) | |
| Duration of partnership (y), mean (SD) | 6.85 (3.9) | 7.0 (3.9) | .6 |
| University education, % (n) | 57.1 (598) | 66.2 (139) | 9.5 |
| Residence, % (n) | 40.4 | ||
| Urban | 28.3 (296) | 27.1 (95) | |
| Suburban | 55.8 (584) | 69.5 (244) | |
| Rural | 15.9 (166) | 3.4 (12) | |
| Country, % (n) | 243.4 | ||
| Australia/NZ | 14.5 (152) | 25.1 (92) | |
| Canada | 10.3 (108) | 42.0 (154) | |
| UK | 8.7 (91) | 2.7 (10) | |
| USA | 64.1 (672) | 30.2 (111) | |
| Other | 2.4 (25) | — | |
| Reproductive characteristics | |||
| Parenthood, % (n) | 18.9 (197) | 30.1 (108) | 19.8 |
| Years infertile, mean (SD) | 3.4 (2.9) | 2.9 (2.0) | 2.4 |
| Know why infertile, % (n) | 75.4 (790) | 70.3 (225) | 3.3 |
| Perceived diagnosis, % (n) | 82.4 | ||
| Unexplained | 10.9 (86) | 14.0 (38) | |
| Female factor | 44.5 (351) | 18.0 (49) | |
| Male factor | 19.9 (157) | 21.7 (59) | |
| Mixed | 11.9 (94) | 14.7 (40) | |
| Same-sex | 1.6 (13) | 3.3 (9) | |
| Age-related | 4.1 (32) | 8.8 (24) | |
| Other | 7.1 (56) | 19.5 (53) | |
| Other health problems, % (n) | 30.8 (309) | 24.0 (260) | 5.8 |
| Years treated, mean (SD) | 2.03 (2.4) | 2.43 (1.8) | 1.6 |
Note: 491 people did not provide data for years of treatment because of no treatment experience or missing data.
Sample size varies per variable.
P<.001.
P<.05.
For people in partnerships.
Factor loadings for online and clinical (in parenthesis) samples on FertiQoL items.
| Core FertiQoL | Optional FertiQoL Treatment module | |||||
|---|---|---|---|---|---|---|
| Emotional | Relational | Mind/Body | Social | Treatment Environment | Treatment Tolerability | |
| Angry | 0.752 (0.800) | |||||
| Grief/loss | 0.763 (0.792) | |||||
| Sad/depressed | 0.730 (0.772) | |||||
| Fluctuate hope/despair | 0.643 (0.759) | |||||
| Jealousy and resentment | 0.737 (0.634) | |||||
| Unable to cope | 0.640 (0.594) | |||||
| Affectionate | 0.749 (0.732) | |||||
| Difficult to talk | 0.629 (0.696) | |||||
| Negative impact on relationship | 0.707 (0.633) | |||||
| Content relationship | 0.768 (0.616) | |||||
| Strengthen relationship | 0.713 (0.603) | |||||
| Satisfied sexual relationship | 0.575 (0.600) | |||||
| Fatigue | 0.731 (0.745) | |||||
| Pain/discomfort | 0.566 (0.663) | |||||
| Feel worn out | 0.620 (0.627) | |||||
| Disrupt activities | 0.704 (0.625) | |||||
| Concentration | (0.634) | 0.554 (0.413) | ||||
| Life on hold | (0.577) | 0.572 (0.355) | ||||
| Family understand | 0.669 (0.669) | |||||
| Friend support | 0.751 (0.649) | |||||
| Society expect | 0.495 (0.446) | |||||
| Isolated | (0.558) | 0.509 (0.531) | ||||
| Handle/pregnant others | 0.538 | 0.306 (0.350) | ||||
| Shame, embarrassment | 0.527 | 0.319 (0.440) | ||||
| Interactions with staff | 0.813 (0.784) | |||||
| Quality treatment information | 0.802 (0.784) | |||||
| Quality surgery and medical treatment | 0.780 (0.763) | |||||
| Fertility staff understand us | 0.728 (0.750) | |||||
| Quality emotional services | 0.632 (0.664) | |||||
| Medical services desired available | 0.576 (0.585) | |||||
| Bothered effect daily activities and work | 0.799 (0.790) | |||||
| Bothered physical effects | 0.792 (0.732) | |||||
| Complicated medication and procedures | 0.645 (0.715) | |||||
| Treatment effects on mood | 0.645 (0.681) | |||||
| Online eigenvalue (% variance) | 7.62 (31.8) | 2.61 (10.9) | 1.44 (6.0) | 1.16 (4.8) | 3.48 (34.9) | 1.92 (19.3) |
| Clinical eigenvalue (% variance) | 8.93 (37.8) | 2.37 (9.9) | 1.23 (5.1) | 1.08 (4.5) | 3.80 (38.0) | 1.68 (16.8) |
Note: Some items reversed to avoid negative loadings. Only factor loadings >0.30 are shown. Factor loadings for Clinic sample in parentheses. Final FertiQoL item wording, response scale wording, and downloads in 20 languages are available at www.fertiqol.org.
Cross-loadings.
Wording for these items changed as a result of psychometric evaluation and participant feedback.
Means and standard deviations for FertiQoL subscales and total scaled scores for the validation sample (online and clinical combined).
| Scale | n | QoL domain | No. of items | Cronbach alpha | Mean (SD) scaled score 0–100 |
|---|---|---|---|---|---|
| Core subscales | |||||
| Emotional | 1,349 | Impact on emotions (e.g., causes sadness, resentment, grief) | 6 | 0.90 | 45.10 (23.2) |
| Mind-Body | 1,338 | Impact on physical health (e.g., fatigue, pain), cognition (e.g., poor concentration) and behavior (e.g., disrupted daily activities) | 6 | 0.84 | 54.86 (21.2) |
| Relational | 1,330 | Impact on partnership (e.g., sexuality, communication, commitment) | 6 | 0.80 | 68.70 (19.2) |
| Social | 1,343 | Impact on social aspects (e.g., social inclusion, expectations, support) | 6 | 0.75 | 51.10 (20.6) |
| Core FertiQoL | 1,226 | Overall core fertility quality of life | 24 | 0.92 | 54.60 (16.8) |
| Treatment subscales | |||||
| Environment | 1,072 | Impacts related to treatment environment (e.g., access, quality, interactions with staff) | 6 | 0.84 | 61.53 (19.6) |
| Treatment tolerability | 1,093 | Impacts due to consequences of treatment (e.g., physical and mode effects, daily disruptions) | 4 | 0.72 | 58.81 (20.6) |
| Treatment FertiQoL | 1,043 | Overall treatment quality of life | 10 | 0.81 | 60.43 (16.2) |
| Total FertiQoL | 930 | Overall fertility quality of life | 34 | 0.92 | 55.43 (14.8) |
Note: All items reversed or scored so that higher scores indicate more favorable quality of life. Final FertiQoL item wording, response scale wording, and downloads in 20 languages are available at www.fertiqol.org.
Infertility-specific questionnaires.
| Author | Name | Development sample | Content |
|---|---|---|---|
| Negative affect, distress and strain | |||
| Bernstein et al., 1985, USA | Infertility Questionnaire | Middle class, patients | Self-image, guilt/blame, sexuality, negative feelings, thoughts about infertility |
| Keye et al., 1984 (unpublished); Collins et al., 1992, USA | Infertility Reaction Scale | Middle class, ART | Need for parenthood, social and work efficiency, social pressure to have a child |
| Newton et al., 1999, Canada | Fertility Problem Inventory | Middle class, patients | Strain or stress in social, sexual, relationship domain, need for parenthood, rejection of child-free living |
| Verhaak et al., 2010, The Netherlands | SCREENIVF | Subsidized ART, women | Mood, helplessness, acceptance |
| Abbey et al., 1991, USA | Fertility Problem Stress Inventory | Infertile couples | Infertility stress |
| Stanton et al., 1991, USA | Infertility Feelings Questionnaire | Patients | Negative feelings in relation to infertility |
| Treatment-specific | |||
| Boivin and Takefman, 1995, Canada | Daily Record-Keeping Sheet | Middle class, ART patients | Negative (depression, anxiety, uncertainty) and positive affect and coping during treatment |
| Pook et al., 1999, Germany | Infertility Distress Scale | Andrology, men | Distress mainly due to infertility & childlessness |
| Franco et al., 2002, Brazil | Psychologic evaluation test after ART | ART patients | Negative reactions to specific aspects of ART |
| Klonoff-Cohen and Natarajan, 2004, USA | Concerns about reproductive technologies | Professional women, ART | Level of concern about different aspects of ART: procedural (e.g., side effects, anesthetics), treatment failure, disruption to work, financial considerations |
| Benyamini et al., 2005, Israel | Difficulty with infertility and its treatment | Patients (early stage) | Significance of 22 difficulties in four domains (uncertainty/lack of control, family and social pressures, impact on self-spouse, treatment-related problems) |
| Quality of life | |||
| Cronin et al., 1998, USA | Polycystic Ovary Syndrome Quality of Life | PCOS patients | Quality of life in five domains (emotions, body hair, weight, infertility, menstrual problems) |
| Jones et al., 2001, UK, | Endometriosis Health Profile–30 | Endometriosis, support group | Symptoms in five domains (pain, control and powerlessness, emotional well-being, social support, self-image) |
| Schanz et al., 2005, Germany | Quality of life in infertile men | Men attending andrology clinic | Functioning in four domains (desire for a child, sexual relationship, gender identity, psychologic well-being) |
Note: Measures of infertility cognitions and/or motivation not shown. ART = assisted reproductive technologies (ART); PCOS = polycystic ovary syndrome.