Development of the Fertility Adjustment Scale

Transcription

1 FERTILITY AND STERILITY VOL. 72, NO. 4, OCTOBER 1999 Copyright 1999 American Society for Reproductive Medicine Published by Elsevier Science Inc. Printed on acid-free paper in U.S.A. Development of the Fertility Adjustment Scale Lesley Glover, Ph.D.,* Myra Hunter, Ph.D., Jeanne-Marie Richards, B.Sc.,* Maurice Katz, F.R.C.P., and Paul D. Abel, Ch.M. University College Hospitals London, and Queen Charlotte s Hospital, London, United Kingdom Received August 6, 1998; revised and accepted April 20, Reprint requests: Lesley Glover, Ph.D., Sub- Department of Clinical Health Psychology, University College London, Gower Street, London WC1E 6BT, United Kingdom (FAX: ; l.glover@ucl.ac.uk). * Sub-Department of Clinical Health Psychology, University College London. Department of Psychology, Guys, Kings College and Saint Thomas Medical and Dental Schools, Saint Thomas Hospital, London. Department of Obstetrics and Gynaecology, University College London Medical School. Department of Reproductive Medicine, Queen Charlotte s Hospital, and Department of Surgery, Imperial College School of Medicine, London /99/$20.00 PII S (99) Objective: To develop a standardized measure of psychological adjustment to infertility. Design: A cross-sectional two-group comparison study. Setting: Two specialized fertility clinics in large teaching hospitals. Patient(s): Fifty men and 50 women undergoing evaluation and/or treatment of fertility problems. Intervention(s): The Fertility Adjustment Scale was administered with the Hospital Anxiety and Depression Scale as a measure of concurrent validity. Main Outcome Measure(s): Scores on the Fertility Adjustment Scale and the Hospital Anxiety and Depression Scale. Result(s): Scores on the Fertility Adjustment Scale were distributed normally. Split-half and internal consistency were high. A significant correlation with measures of mood, anxiety, and distress provided evidence of concurrent validity. Conclusion(s): Preliminary results suggest that this measure will be a useful tool in assessing psychological reactions to fertility problems and outcomes of treatment. (Fertil Steril 1999;72: by American Society for Reproductive Medicine.) Key Words: Infertility, adjustment, measure, distress Infertility is defined as the lack of conception after 12 months of unprotected intercourse (1). Estimates vary, but it appears that approximately 15% of couples have fertility problems by this definition (2). For many, this is a timelimited condition that resolves itself naturally, for others, medical treatment is required. Many couples in this situation do not view themselves as infertile but as having fertility problems (3). The distinction between fertility and infertility is not clearly dichotomous; in this article, the term fertility problem is used in reference to couples who are undergoing evaluation or treatment for difficulty in conceiving. Once fertility problems are diagnosed, couples who seek help frequently embark on a process of investigation and treatment that is likely to be punctuated by alternating hope and disappointment. Although the treatment of fertility problems has advanced rapidly over the last two decades, the prognosis in terms of pregnancy for couples undergoing treatment is still relatively poor and varies with the type of intervention (4). The outcome of the treatment of fertility problems has been measured almost exclusively in terms of pregnancy rates, even in studies that have evaluated a psychological intervention (5). Given that there is some evidence that pregnancy does not necessarily ameliorate the distress associated with infertility (6, 7) and that the pregnancy rates associated with infertility treatments are low, it seems essential that an appropriate and useful measure of outcome be developed that directly addresses psychological adjustment. Despite this obvious need, there has been little psychological research examining individuals particular reactions to fertility problems (i.e., their thoughts, feelings, beliefs, and behaviors). Although some studies have examined cognitions relating to fertility problems (8, 9), most have concentrated on individuals or couples emotional responses. Even those studies that have examined cognitive responses have tended to investigate general types of appraisal rather than cognitions about fertility 623

2 problems per se. Attempts to examine adjustment to fertility problems have focused on coping strategies and their relation to distress, with findings suggesting that the use of avoidant coping, such as avoiding pregnant women and not discussing the problem, correlates with distress (10, 11). From psychological research in other areas of reproductive health, such as genetic screening (12), the birth experience (13), and preparation for surgery (14), it appears that the development of realistic expectations about the experience and outcome of events or treatments is associated with indices of psychological health and recovery. In addition, studies of problem-solving in the face of uncertainty emphasize the benefits of developing a reasonable time frame, weighing the advantages and disadvantages of outcomes, and creating short-term goals that might improve psychological well-being (15). In our clinical experience, psychological interventions can aim to help people gradually to develop realistic expectations about the outcomes of treatments and to work within a time frame to encourage preparation for both positive and negative outcomes. Psychological adjustment has been operationalized in a number of ways, but rarely is it clearly defined. For the purpose of this article, it is viewed as the way in which individuals acknowledge and process information about the course of their fertility problem and its investigation, treatment, and possible outcomes. Here, adjustment is treated as a heterogeneous concept that includes cognitive, behavioral, and emotional aspects. It is the measurement of adjustment to fertility problems that is the focus of this article. It has been well documented that men and women are distressed by the experience of having fertility problems and undergoing their investigation and treatment (16, 17). Individuals may vary in their fertility adjustment at different stages of treatment. Adjustment does not mean that they no longer wish to have a child or that they have accepted that they can or cannot become pregnant. Rather, it suggests the extent to which individuals are able to process cognitively, emotionally, and behaviorally the possibilities of having and not having a child (i.e., their state of preparation for either outcome). The aim of this study was to develop a reliable and valid measure of adjustment to fertility problems, the Fertility Adjustment Scale (FAS). It was predicted that high scores on the FAS questionnaire would correlate positively with high scores for anxiety, high scores for depressed mood, and high scores for distress felt about infertility. MATERIALS AND METHODS Measures Development of the FAS After performing qualitative pilot interviews with couples attending a fertility clinic at various stages of investigation TABLE 1 Mean scores on individual items of the Fertility Adjustment Scale. Item Mean ( SD) score I will continue with investigations/treatment until I succeed in having a child There are both advantages and disadvantages to having a child* I cannot plan for the future until I know for certain whether or not I can have a child I can talk to my partner about the possibility of not having a child* I want a child of my own more than anything else in life I have made plans for a possible future life without a child* I seem to live my life from month to month I will always feel unfulfilled if I am unable to have my own child I think I could adjust to a future life without a child* I make sure that I carry on with my normal life activities* I cannot imagine a future without a child I think life could be rewarding either with or without children* * Reverse-scored. and treatment and drawing on our clinical experience, we selected 12 statements for inclusion in the questionnaire (Table 1). These items were expected to provide an indication of the extent to which individuals had considered, or come to terms with, the possibility of life with and without a child. They were chosen to cover the range of cognitive, emotional, and behavioral responses to fertility problems. Participants were asked to rate their agreement or disagreement with each statement using a scale that ranged from 1 strongly disagree to 6 strongly agree. A Likert scale normally has 5 points that range from strongly agree to strongly disagree (18). In this case, the scale was extended to six points to avoid having a neutral midpoint. Items were balanced in terms of positive and negative statements to minimize the effect of a response set. A total score was derived by summing the scores on the individual items; positive items were reverse-scored. A high score on the FAS questionnaire was taken to represent an indication of poor adjustment. The minimum possible score was 12 and the maximum score was 72. A sample of 50 men and 50 women completed the questionnaire. Internal and test-retest reliability were evaluated. To assess concurrent validity, participants completed the Hospital Anxiety and Depression Scale (19) and a measure of infertility distress. 624 Glover et al. Development of the FAS Vol. 72, No. 4, October 1999

3 The Hospital Anxiety and Depression Scale Anxiety and depression were measured by the Hospital Anxiety and Depression Scale (19). This is a well-validated, 14-item, self-assessment screening scale for anxiety and depression developed for use in a hospital medical outpatient setting. Unlike other mood measures, it avoids questions relating to physical symptoms, so its results are less susceptible to contamination by actual physical illness or side effects of treatment. Hamer et al. (20) found that it performed well as a screening instrument compared with the structured clinical interview for the Diagnostic and Statistical Manual of Mental Disorders (3rd edition), in a sample of patients presenting with deliberate self-harm. It has been validated as a state measure suitable for evaluating changes in anxiety and depression in nonpsychiatric patient populations (21). Infertility Distress Infertility distress was measured using a visual analogue scale consisting of a 10-cm line anchored at each end with the words not at all distressed and very distressed. The visual analogue scale has been established as a valid and reliable technique for measuring subjective experience (22). Additional Information Participants were asked to provide information relating to their age, employment status, and fertility history and treatment. They also were asked to rate, using a visual analogue scale, their likelihood of becoming pregnant. The visual analogue scale (a 10-cm line) was anchored with the words 0% chance of becoming pregnant and 100% chance of becoming pregnant. Participants and Procedure The participants were recruited from the departments of reproductive medicine in two central London hospitals. One was a specialized male infertility clinic providing investigation, medical and surgical treatment, and IUI, with referral for IVF; the other clinic provided similar services for men and women. At the time of the study, neither clinic offered donor insemination, and intracytoplasmic sperm injection was not available. Ethical approval was obtained from the local research ethics committees at both hospitals. Patients who attended the clinic over a 6-month period were invited to take part in the study. If they consented, they were asked by the receptionist to complete the questionnaires before their appointment with the physician. The questionnaires were returned to one of the researchers (J.R.) or to the receptionist. When possible, both partners in a couple were recruited from each clinic, regardless of whether the fertility problem was related to a female factor, a male factor, or both. To assess test-retest reliability, the FAS then was sent to 37 participants 2 weeks after they had completed the initial questionnaire. TABLE 2 Demographic and fertility data for 100 individuals with infertility. Variable No. of men (%) with indicated characteristic No. of women (%) with indicated characteristic Mean ( SD) age (y) Mean ( SD) age on leaving full-time education (y) No. who left full-time education at indicated age 16 y 17 (35) 19 (40) 16 y 32 (65) 29 (60) Employment status Full-time 40 (80) 25 (50) Part-time 2 (4) 12 (24) Unemployed 7 (14) 1 (2) Not employed* 1 (2) 12 (24) Individual with infertility Self 21 (42) 18 (36) Partner 6 (12) 12 (24) Both 6 (12) 7 (14) Unknown 17 (34) 13 (26) Diagnosis given Yes 20 (40) 30 (60) No 25 (50) 18 (36) Unknown 5 (10) 2 (4) * Not employed not working by choice. Statistical Analysis Data were analyzed using the Statistical Package for the Social Sciences for Windows 6.0 (23). A reliability analysis was performed with the use of the Cronbach statistic, which measures the extent to which items within a scale correlate with other items in the scale. Test-retest reliability was assessed using paired t-tests for related samples (24). RESULTS Sample Characteristics Data were collected from 109 participants. Responses on the FAS were incomplete on nine of the questionnaires and therefore were not included in the analysis, leaving a sample of 100 participants. Kline (24) recommends that a minimum sample of 100 should be used to assess the psychometric properties of a measure. Forty-eight patients were recruited from one clinic and 49 from the other; clinical data were missing in 3 cases. Significantly more women were recruited from one clinic (34 compared with 16) and significantly more men were recruited from the other (14 compared with 33) ( , df 1, P.001). Demographic and fertility data are given in Table 2. The mean ages of the men and women were 34 years and 33 FERTILITY & STERILITY 625

4 FIGURE 1 Histogram of Fertility Adjustment Scale scores (mean SD, ; n 100). TABLE 3 Mean scores for anxiety, depression, and fertility distress and their correlation with Fertility Adjustment Scale scores. Variable Mean SD Range* r HADS anxiety (n 98) HADS depression (n 98) Fertility distress (n 98) FAS (n 100) Note: FAS Fertility Adjustment Scale; HADS Hospital Anxiety and Depression Scale. * Range indicates possible score on each scale. P scores between the men ( ) and the women ( ). The men s scores ranged from and the women s scores ranged from The mean scores for individual items are given in Table 1. Internal Consistency years, respectively. The men and women reported similar levels of education; the mean ages at which they discontinued full-time education were 19 years and 18 years, respectively. Most of the men were employed full-time compared with half the women. The overall mean ( SD) time the patients had been attempting to conceive was months. Their fertility problem had been under investigation for a mean ( SD) of months and under treatment for a mean ( SD) of months. There were no statistically significant differences between the clinic groups or between the men and the women in terms of the time they had been attempting to conceive or the time their fertility problem had been under investigation. There was a statistically significant difference between the men and the women and between the clinic groups in the time the patients had been under treatment (t 3.67, P.001 and t 4.49, P.001, respectively), with men who attended the specialized male infertility clinic having a shorter average treatment time. Approximately 50% of the patients did not have a clear awareness of their diagnosis, and of those who did, the most common problems identified related to ovulatory function and sperm quality or quantity. Sixteen women and 12 men reported having an existing child already. Fertility Adjustment Scale A histogram of the FAS scores for the sample population is shown in Figure 1; it indicates a normal distribution of the scores. The total mean ( SD) score was , with a minimum score of 16 and a maximum score of 70. There was no statistically significant difference in the mean ( SD) The internal consistency of all the items on the scale was assessed using the Cronbach statistic. The analysis gave an value of.8557 and a standardized value of.8554, which showed that the items are highly correlated. A level of.75 generally is considered to be acceptable. Split-half reliability is an additional method used to assess the extent to which items measure the same construct. This was applied to the FAS. The 12 items were split pseudorandomly, with 3 positive items (reverse-scored) and 3 negative items in each half. The mean ( SD) scores were found to be similar (3.5 1 versus ). The correlation between the two halves was.6805 and the Guttman split-half coefficient was.8087; this also is acceptable. Test-Retest Reliability Of the 37 questionnaires sent out, 30 test-retest questionnaires, completed 2 weeks after the first questionnaire, were returned, for a response rate of 81%. The Pearson product moment correlation coefficient between the total scores at the two time points was.88 (P.001), which suggests that the FAS is reliable over time. Validity Concurrent validity was assessed by correlating FAS scores with anxiety, depression, and fertility distress. All were found to correlate significantly with the FAS. Mean scores for the variables and their correlation with FAS scores are given in Table 3. Correlation coefficients also were calculated between FAS scores and age, time attempting to conceive, duration of treatment, and estimated chance of becoming pregnant. No significant correlations were found. Independent samples 626 Glover et al. Development of the FAS Vol. 72, No. 4, October 1999

5 t-tests were used to compare FAS scores according to age on discontinuing full-time education ( 16 years versus 16 years) and whether participants already had a child. No statistically significant differences were found. DISCUSSION The FAS was developed from pilot work and a perceived clinical need for a tool that could be used to assess psychological reactions to, and outcomes of, fertility problems. The scores on the FAS were distributed normally and were similar for both men and women. Overall, the results suggest that the FAS is a reliable measure. The significant correlation of the FAS with measures of depression, anxiety, and distress provides evidence of concurrent validity. It has been suggested that a correlation of.6 between two measures represents an extremely strong association (25). Given that adjustment and mood are related but discrete constructs, it would be expected that there would be a moderate association between the FAS and the Hospital Anxiety and Depression Scale; the results suggest that this is the case. The higher association between the FAS and fertility distress provides support for the closer relation between these measures and in turn for the validity of the scale. Its lack of relation to demographic and fertility history measures is to be expected if it is truly a measure of psychological adjustment. For individuals to adjust, it is necessary for them to make cognitive, emotional, and behavioral shifts. Although for some patients, processing may be aided by time and the experience of investigation and treatment, for others, the ongoing hope of having a child associated with continued treatment-seeking may impede such processing. Because of staff shortages and time pressures, it was not possible to give questionnaires to all patients who attended the clinics during the study phase or to record accurately the refusal rate. However, it seemed that most of those who were approached completed and returned the questionnaires. When data collected from one clinic were compared with data from other studies with high response rates undertaken in the same clinic (26), similar demographic profiles were evident. This suggests that the current sample was representative of patients who attend this clinic. There is increasing recognition of the need to provide psychological care for couples with fertility problems. Indeed, in the United Kingdom, it is a requirement of the Human Fertilization and Embryology Authority code of practice that counseling be made available to those seeking assisted conception for registered treatments such as IVF and donor insemination. Nevertheless, there is a dearth of studies evaluating the medical and psychological interventions with these patients and measures to assess outcome in a holistic fashion. During this time of increased concerns about fertility problems and ethical debates regarding some fertility treatments, the FAS may be a useful tool for assessing outcomes other than pregnancy in clinic populations. It also may prove to be a useful clinical tool and may be helpful in screening patients who are attending clinics to assess their possible psychological needs. As a clinical device, it could provide a useful starting point for discussions with couples about adjustment to fertility problems and could aid patients understanding of their own and their partners viewpoints. Further research is needed to provide standardization data from larger samples in different clinic settings and to assess the usefulness of the FAS as an outcome measure. 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