1 Institute of Public Health, University of Copenhagen, Panum Institute, Blegdamsvej 3, DK-2200 Copenhagen N, Denmark, 2 School of Psychology, Cardiff University, Cardiff CF10 3YG, UK, 3 Institute of Anthropology, University of Copenhagen, DK-1400 Copenhagen K, 4 The Fertility Clinic, Herlev University Hospital, DK-2730 Herlev, 5 The Fertility Clinic, Brædstrup Hospital, DK-8740 Brædstrup, 6 The Fertility Clinic, Odense University Hospital, DK-5000 Odense and 7 The Fertility Clinic, The Juliane Marie Centre, Rigshospitalet, DK-2100 Copenhagen Ø, Denmark
8 To whom correspondence should be addressed. e-mail: L.Schmidt{at}pubhealth.ku.dk
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Abstract |
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Key words: assisted reproduction/clinical epidemiology/evaluation/patient satisfaction/psychology
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Introduction |
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Few studies have investigated how infertile patients evaluate both medical and patient-centred care. The medical care includes, for example the staffs technical skills and preparation for examinations and treatment. The patient-centred care is the routine psychosocial care provided by all members of staff, for example that staff listen to the patient (Boivin and Kentenich, 2002). The studies identified included fertility patients treated in the 1980s (Sabourin et al., 1991
; Wirtberg, 1992
; Halman et al., 1993
; Sundby et al., 1994
; Malin et al., 2001
) and in the 1990s (Schmidt, 1998
; Souter et al., 1998
; Hammarberg et al., 2001
; Malin et al., 2001
). Four studies included couples (Sabourin et al., 1991
; Wirtberg, 1992
; Halman et al., 1993
; Schmidt, 1998
), and the rest sampled only women (Sundby et al., 1994
; Souter et al., 1998
; Hammarberg et al., 2001
; Malin et al., 2001
). The studies were conducted in different countries with different organizations of fertility treatment: Australia (Hammarberg et al., 2001
), Canada (Sabourin et al., 1991
), USA (Halman et al., 1993
), UK (Souter et al., 1998
) and the Nordic countries (Sweden: Wirtberg, 1992
; Norway: Sundby et al., 1994
; Denmark: Schmidt, 1998
; Finland: Malin et al., 2001
).
In general, both women and men were satisfied with the quality of the medical care at the different fertility clinics. Patients often expressed a need for more written information about the medical treatment (Schmidt, 1998; Souter et al., 1998
). Satisfaction with the patient-centred care given was lower than medical care in all these studies. Infertile couples expressed the wish for a more couple-centred approach (Wirtberg, 1992
; Schmidt, 1996
; Souter et al., 1998
), for more emotional advice and support (Sundby et al., 1994
; Schmidt, 1998
; Hammarberg et al., 2001
), for counselling about when to stop treatment (Hammarberg et al., 2001
) and information about alternative ways to become parents (e.g. adoption) (Sabourin et al., 1991
; Halman et al., 1993
; Schmidt, 1998
).
In their prospective study, Sabourin et al. (1991) found that men and women who were more vulnerable from a social and personal standpoint were significantly less satisfied with the medical services. Vulnerability was based on scores for stress experience, psychiatric symptomatology, sexual and marital satisfaction, density of social network and satisfaction with social support. It was not clear whether satisfaction was lower for the more vulnerable patients because these patients were more demanding or because vulnerable people were in a negative mood and therefore less willing to assign positive ratings.
Further the predictors of satisfaction with assisted reproduction appear to be low number of treatments (Halman et al., 1993), a treatment-related delivery (Sundby et al., 1994
; Hammarberg et al., 2001
; Malin et al., 2001
), treatment at a dedicated fertility clinic and treatment with the involvement of only one doctor (Souter et al., 1998
).
Vulnerability, an increasing number of treatments as well as treatment without achieving a pregnancy or a delivery can be interpretated as stressors (Setterlind and Larsson, 1995) and these seem to be key determinants of patient satisfaction.
Another infertility-related stressor among men seems to be male infertility. Qualitative studies have indicated that infertile men experienced more stress than fertile men in infertile partnerships (Nachtigall et al., 1992; Schmidt, 1996
; Tjørnhøj-Thomsen, 1999a
,b). Beutel et al. (1999
) reported that men in ICSI treatment tended to wish for more psychological support than men in IVF treatment and that men in microsurgical epididymal sperm aspiration (MESA) and testicular sperm extraction (TESE) reported significantly lower overall life satisfaction than men in ICSI or IVF treatment. Other studies comparing emotional reactions in men undergoing IVF or ICSI have shown that differences in distress are minor and of a short duration (Boivin et al., 1998
).
In the period from 1990, assisted reproduction has changed significantly with the development of IVF and of ICSI treatment for male infertility. It is remarkable that we could only identify two quantitative studies in this period including men. Kerr et al. (1999) studied retrospectively 980 responders from two large infertility support organizations in the UK. Only 37 of the responders were male. In total, 84% reported that they had received positive help from their infertility specialist and 68% felt that they fully understood the nature of their own and/or partners infertility. Glover et al. (1999
) investigated the expectations of 29 men for an upcoming medical consultation at a male subfertility clinic but not their evaluation of a treatment process.
There is a need for more large-scale evaluation studies with high response rates and with the inclusion of both partners. Also there is a need for identifying predictors for satisfaction with both medical and patient-centred (psychosocial) care as these seem to yield different results.
In the present Danish study, we examined evaluation of both medical and patient-centred care in fertility clinics among patients who had started fertility treatment 12 months earlier. We examined: sex differences in (i) evaluation of medical and patient-centred care and (ii) predictors of satisfaction with care. Our hypotheses were that infertility-related stress would be associated with lower satisfaction ratings and that treatment success would be associated with higher satisfaction. Based on the research reviewed, we included the following stressors in the analysis: number of treatments, fertility problem stress, a diagnosis of male infertility and outcome of treatment (e.g. no pregnancy and/or delivery).
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Materials and methods |
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Procedure
The Copenhagen Multi-centre Psychosocial Infertility (COMPI) Research Programme is a prospective evaluation of the treatment process and of the psychosocial aspects of infertility among fertility patients in Denmark. Briefly, baseline data were collected consecutively among Danish speaking infertile couples beginning a new period of treatment at one of four public clinics (Brædstrup, Herlev, Odense, Rigshospitalet) and one private fertility clinic. Three of the public clinics were university clinics. All five clinics were selected because they were large and they covered different geographical regions (large cities including the capital city and more rural areas). All clinics invited agreed to participate in the study. The four public clinics during the years 20002001 conducted 62.8% of all IVF, ICSI and oocyte donation cycles conducted at public fertility clinics in Denmark. Treatment outcome at these four clinics did not differ from outcome from all public clinics in Denmark (Erb,K., Odense University Hospital, personal communication). The cost of treatment (excluding medication) was covered by the National Health Service in the public clinics and treatment was self-financed at the private clinic. Baseline data (T1) was collected from January 2000 to August 2001. Eighty per cent of the eligible patients participated; 83.1% of all eligible women, n = 1169; and 76.9% of all eligible men, n = 1081; total n = 2250 (for details see Schmidt et al., 2003).
All baseline, participants except 38 participants (19 couples) whose identity was not registered at baseline received a follow-up questionnaire, information about the study, and a stamped and pre-addressed envelope 12 months after baseline (January 2001 to August 2002). We could not trace the address for two men and two women, one man had died and one woman suffered a severe brain injury following a road accident. The questionnaires were sent and returned to the first author (L.S.) who was not employed at any of the clinics. The clinic staff did not know whether or not a patient was participating in the study.
Data collection
The participants completed the first follow-up COMPI questionnaire booklet which contained questions about treatment in the past 12 months, psychosocial aspects of infertility including the evaluation of care, fertility problem stress, control of the situation, communication, social relations, ways of coping, sense of coherence, and well-being. The following section describes only those variables used for the analyses presented here. A more comprehensive account of the full project questionnaire is available from the first author (L.S.).
Sociodemographic and medical variables
Questions about socioeconomic position, former children, years infertile, diagnosed female infertility, and diagnosed male infertility were obtained from the baseline questionnaire (T1) 12 months earlier when the participants began a new treatment period at one of the five fertility clinics. Socioeconomic position was measured in a standardized way by seven items about school education, vocational training and job position, and categorized in a standardized way into social class I (high) to V (low) and VI (receiving social benefits) (Hansen, 1984). In the analyses social class was reduced to three levels: high (social class I + II), medium (social class III + IV) and low (social class V + VI).
Information about kinds of treatment, number of treatments, and result of treatment were included in the follow-up questionnaire (T2).
Evaluation of treatment
The follow-up questionnaire included 13 evaluation items about the care received at the fertility clinic. Eleven of these items were adapted from a European study about patients priorities and evaluation of general practitioners (Grol et al., 1999; Mainz et al., 2000
). Items were selected from a list of 23 items if the specific item had been identified in qualitative interviews among Danish fertility patients (Schmidt, 1996
). We modified the items to be specific to infertility, if necessary. The last two items (i.e. treatment plan individualized for the couples special situation; explained what went wrong if treatment was unsuccessful) were added because they were identified as important by Schmidt (1996
). The response key was (1) poor to (5) excellent and (6) dont know or irrelevant.
Fertility problem stress
The psychosocial impact of infertility was measured at T1 using 16 items concerned with the benefits and strains related to infertility produced in the personal, social and marital domain. Seven of these items were taken from The Fertility Problem Stress Inventory (Abbey et al., 1991). This measure is described in detail by Schmidt et al. (2003
). The number of items, range, mean and Cronbach alpha coefficients differed depending on the subscale: marital benefit (two items, range 08, mean 5.64, SD 1.95, correlation 0.83); marital stress (four items, range 014, mean 3.93, SD 3.15, Cronbachs alpha 0.73); social stress (four items, range 012, mean 1.86, SD 2.41, alpha 0.82); and personal stress (six items, range 020, mean 6.88, SD 4.47, alpha 0.82). Higher scores indicated more marital benefits and more marital, social and personal stress.
Questionnaire pilot test and translation
The follow-up questionnaire was pilot-tested among 31 infertile patients (17 women, 14 men). A large part of the follow-up questionnaire was identical with the baseline questionnaire that was tested among 122 infertile people (Schmidt et al., 2003). The pilot-test showed good distribution of scores across the different response categories, and no questions had to be reformulated.
Data analysis
All the 13 items covering evaluation of treatment were factor-analysed and we identified two factors: (i) satisfaction with medical care, seven items about medical procedures and examinations, medical information provided and explanations concerning treatment failures, and (ii) satisfaction with patient-centred (psychosocial) care, six items about how the staff took personal interest in the patient and responded to emotions related to the fertility problem (see items in Table III). For each of the two factors, we dichotomized such that approximately the most satisfied third of the participants was categorized as 1 and the rest as zero. We calculated means and SD of evaluation of medical and patient-centred care with the inclusion of the response category from (1) poor to (5) excellent and excluded category (6) dont know or irrelevant from the analyses. Comparisons between men and women on satisfaction ratings were tested by 2-test from contingency tables.
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For each of the regression analyses the following list of predictors was included: age, social class, clinic, having no child together before baseline data collection, total number of fertility treatment attempts in the past 12 months, diagnosis of female infertility, diagnosis of male infertility, a treatment-related pregnancy, a treatment-related delivery, personal stress, social stress, marital stress, and marital benefit at baseline. The exact number of years was used for age. We calculated (i) the age-adjusted crude odds ratios (OR), (ii) the adjusted OR where all predictors were included in the model at the same time, and (iii) the OR for the final model where insignificant OR were eliminated with stepwise backwards elimination, and (iv) model 3 without the variable clinic.
The study was assessed by the Scientific Ethical Committee of Copenhagen and Frederiksberg Municipalities who had no objections. The Danish Data Protection Agency has approved the study.
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Results |
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Predictors of positive evaluation of medical and patient-centred services
Logistic regression analyses were computed to examine whether sociodemographic, medical variables and psychosocial variables were associated with satisfaction with medical or patient-centred care. Comparisons between clinics showed that the participants from the public clinic outside a university hospital reported significantly more satisfaction on all of the 13 items measuring the care whereas there were no differences in satisfaction ratings from the remaining clinics. As a consequence, clinic (public non-university clinic versus public university clinics) was included as a predictor variable in further analyses.
Tables IV and V show the age-adjusted OR and 95% confidence intervals (CI) for the logistic regression for evaluation of medical services (Table IV) and patient-centred (psychosocial) services (Table V) for men and women. An OR of 1 means that the predictor was not associated with the outcome, i.e. good/excellent (coded 1) versus poor (coded zero). Tables IV and V present the OR per unit decrease in social class (high, medium, low). An OR of 1.72 for social class means that each step downwards in social class increased the satisfaction with an OR of 1.72. The ORs for fertility problem stress and for marital benefit were calculated per unit increase in stress or benefit. For example, an OR of 0.92 means that for every unit increase in infertility-related stress, the OR decreased by an average of 8%. If the stress scale has 10 units, the OR for the highest level of stress compared with the lowest level would be 0.20. For a number of predictor variables the association with satisfaction attenuated from the crude to the multivariate analyses. The final models in Tables IV and V only include significant predictors of satisfaction.
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Fertility problem stress and satisfaction
Among women, a higher level of marital stress at baseline was predictive of both a lower satisfaction with medical care (final model in Table IV) and with patient-centred care (final model in Table V). There was no association between stress and satisfaction among men (Tables IV and V, final models).
Male infertility and satisfaction
There was an association between diagnosed male infertility and satisfaction with care but only among women and only in relation to evaluation of medical care. Women whose partners were infertile were significantly less satisfied with the medical care than women from couples with no male infertility diagnosed (Table IV, final model).
Marital benefit
There was a graded association between marital benefit and satisfaction with both medical and patient-centred care among both men and women (Tables IV and V, final models). The respondents who at baseline reported that infertility had strengthened their relationship were significantly more satisfied with the treatment than participants with low values on the marital benefit scale.
Other results
Among both men and women there was an increasing satisfaction with both medical care and patient-centred care by decreasing social class, all OR values >1.60 (Tables IV and V, final models). Treatment at the non-university clinic was a significant predictor for treatment satisfaction.
Having a child together prior to inclusion at baseline, number of treatment attempts, diagnosed female infertility, personal fertility stress and social stress at baseline were not associated with satisfaction in the fully adjusted models in Tables IV and V.
Finally, we repeated the analysis with the final model without the variable clinic in order to see if the predictive value of the remaining predictors attenuated. The predictive value of the remaining variables remained almost the same.
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Discussion |
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One of the major findings was a high satisfaction with both medical and patient-centred care among both men and women. Other studies have also shown high patient satisfaction (Sabourin et al., 1991; Halman et al., 1993
). Our findings extend those of past research using a validated scale for the measurement of patient satisfaction in a European population (Grol et al., 1999
; Mainz et al., 2000
). It is noteworthy that we identified high satisfaction ratings regarding patient-centred care despite the lack of psychological counselling, psychotherapy or other professional psychosocial services. This finding would seem to suggest that it is possible to meet patients psychosocial and emotional needs without formal psychosocial services. This finding is important in light of past work showing that few patients (<15%) take up psychological counselling even when it is offered for free and at convenient times for patients (Boivin et al., 1999
). However, it should be noted that in this cohort 49% of the men and 919% of the women stated before treatment that they would want to use psychosocial services if these were offered (Schmidt et al., 2003
). Our findings therefore support proposals calling for the development and evaluation of different methods of meeting patients psychosocial needs, including education of fertility clinic staff in the psychosocial field (e.g. see Boivin and Kentenich, 2002
).
Although it is difficult to compare in detail our results with those from other evaluation studies, it seems that we have found higher satisfaction ratings with patient-centred (psychosocial) services, for example taking care of the emotional problems related to infertility and treatment, than in other studies (Sundby et al., 1994; Souter et al., 1998
; Hammarberg et al., 2001
). However, several explanations can be offered. Past studies included participants treated in the period 19821996 whereas we investigated fertility patients during the period 20002001 when assisted reproduction treatment had become more routine. As clinic staff become more experienced in medical aspects of assisted reproduction treatment, it is possible that more effort and time can be devoted to other aspects of treatment including improving the psychosocial aspects of care. Also during recent years there has been a much greater awareness of patient-centred care in general in the health care system. Another explanation is related to the clinics and the staff. All the clinics included in this study were of a considerable size. Large clinics in Denmark have detailed standard procedures for the different kinds of treatments and detailed written patient information about the treatment. As noted previously, mental health professionals are not included in fertility clinics in Denmark, but clinics do routinely provide detailed written information about the psychosocial aspects of infertility. It is reasonable to propose that such standardization, in so far as it contributed to the efficiency of those clinics and the knowledge base of the patients, also contributed to patients satisfaction ratings. Finally, a great proportion of the staff employed at the clinics included in this study were also employed at private fertility clinics. It is possible that the more service-oriented aspects of care necessary to attract patients to the private sector influenced the way assisted reproduction treatment patients were treated at the public clinics.
A second important finding was that personal stress and social stress were not significantly associated with patient satisfaction, whereas marital stress (for women) and, conversely, marital benefit (for men and women) were both significant predictors of satisfaction in the final model. One key predictor of adjustment to fertility treatment is the strength of the marital relationship, presumably because of the need for support among spouses. It has been suggested that medical staff may be called upon to provide this support when there is marital strife (Boivin et al., 1998). Given the time demands placed on medical staff, such a request may be too onerous and consequently patients with such problems may feel their emotional needs were unmet. It may be worthwhile in such cases to identify these couples and refer them for additional support services (e.g. support group, counsellor), either before or during treatment.
In concordance with other studies (Sundby et al., 1994; Hammarberg et al., 2001
; Malin et al., 2001
) we also found that satisfaction was higher among those who conceived a child. We found, however, that the importance of a treatment-related delivery for treatment satisfaction attenuated in the multivariate models, indicating that the relative importance of this factor decreased compared with the importance of the other factors included in the multivariate model. This finding is important in that it may suggest that patients satisfaction, especially amongst those unsuccessful, was not simply due to depressed mood following treatment failure but to other aspects of treatment delivery.
As suggested by earlier studies (Nachtigall et al., 1992; Schmidt, 1996
; Beutel et al., 1999
; Tjørnhøj-Thomsen, 1999a
,b), male infertility seems to be very stressful for men compared with a diagnosis of female infertility. We were therefore surprised by the finding that male infertility was not associated with patient satisfaction among men, but that it was among women in couples with male infertility. In some respect this may simply reflect the reality that there is less that medical staff can do for patients with male infertility than for those with female infertility. Consequently, evaluations of the medical services (e.g. describing treatment options or making individualized treatment plans) are likely to be more limited for these couples. Given that women are more engaged in the treatment process (Greil, 1997
), they may be more frustrated by this lack of services than are men. On the other hand, Sabourin et al. (1991
) identified no significant associations between satisfaction and infertility diagnosis or type of treatment. It is therefore possible that for men, male infertility is not related to evaluation of care or that the measurement of evaluation used in this study and our own study did not include the specific items relevant for evaluation of treatment of men with diagnosed male infertility.
In summary, our hypothesis that fertility problem stress was associated with lower satisfaction ratings with care was only partially supported. Satisfaction with care was in the multivariate models not associated with numbers of treatment or with personal and social fertility problem stress. Satisfaction ratings were for women negatively associated with marital stress and with male infertility. These findings are contrary to Sabourin et al. (1991) who found lower satisfaction ratings among the more psychologically vulnerable men and women. Their concept vulnerability included variables concerning stress experience, psychiatric symptoms, social network and satisfaction with marriage. Our operational definition of vulnerability was more narrow, and it is therefore not possible to conclude whether the different results illustrate real differences or whether they reflected different ways of measurement.
Patients from lower social classes were more satisfied with both medical and patient-centred care than patients from higher social classes. We interpret this finding as an indication of the fertility clinic staffs ability to meet the needs of patients with relatively fewer social resources. It is also possible that people from lower social classes view medical staff with more reverence and therefore are more reluctant to give negative evaluations. Sabourin et al. (1991) found a non-significant tendency that more educated and wealthy men and women were less satisfied with fertility treatment. In a meta-analysis of patient sociodemographic characteristics as predictors of medical care, Hall and Dornan (1990
) found that lower education was significantly associated with greater satisfaction. However, social status showed a marginally significant association between high social status and satisfaction. The concept social status in this meta-analysis referred to all definitions of social class that were not simply education and income (ibid., p. 812). In our study we measured not only education but also social class, a standardized combined measure for school education, vocational training and job position (Hansen, 1984
). Our findings are therefore contrary to the findings from the meta-analysis of patient satisfaction with medical care.
A range of studies has demonstrated that men and women experience infertility and treatment differently and that women in general are more distressed by the couples infertility. Women and men in the COMPI study have different expectations of fertility treatment and men have lower importance ratings of patient-centred care when starting treatment (see earlier results for this sample in Schmidt et al., 2003). Despite this, we found no sex differences in the participants evaluation of patient-centred care. Most studies of patient satisfaction have found no association between gender and satisfaction ratings (a meta-analysis in Hall and Dornan, 1990
), but a large Norwegian study among patients from surgical and medical wards showed that women <35 years were less content with all aspects of nursing care than the young men (Foss, 2002
).
This is the first prospective study of patient satisfaction which was carried out after introduction of ICSI as a routine treatment. The public clinic outside a university hospital deviated from the other clinics by having extremely high satisfaction scores on every single item in the measurement scale. The four public clinics were similar regarding treatment options, treatment results, patient access, and the organization of the services. The main reason for the difference observed could be one of resources in that the public university clinics are responsible for both the fertility treatment, for doing research and for teaching medical students as well as students from other health professions and therefore may have fewer resources than those not having such academic constraints.
Our findings must be viewed in the light of the weaknesses and strengths of the study. The main limitation is the selection bias caused by the under-representation of patients from the private clinic where patients pay themselves for the treatment. Patients who pay for treatment may be more demanding. However, a comparison of ratings from the 32 participants who were recruited from the private clinic showed that their ratings did not substantially differ from those of participants in public clinics. Furthermore, although the response rate was high, the non-respondents at follow-up may have introduced some selection bias. It is possible that the non-respondents included people with a higher rate of unsuccessful treatments. Unfortunately, for ethical reasons we were not allowed to identify non-respondents with their personal identification number in order to trace their medical records with information about reproductive outcomes. However, as the participation rate was >85% we feel confident that such bias did not significantly distort the results of the study.
The patient evaluation measurement we used has been validated in relation to general practice (Grol et al., 1999; Mainz et al., 2000
) but not among patients in fertility treatment. However, as we selected items from this measurement only if they corresponded to issues raised by infertile couples in previous research, we feel measurement error would not substantially impact on our results. The separation of items into two scales is somewhat artificial since a few of the items (e.g. to be thorough and careful) include aspects of both medical and patient-centred care. The two items with lowest satisfaction ratings (to explain what went wrong if treatment was unsuccessful; to take care of the emotional problems of the fertility problems and treatment) relate to issues that are difficult for the clinic staff to manage. Oftenwise, there is no known explanation for a lack of a pregnancy after a treatment cycle, and emotional problems are more difficult to take care of than instrumental issues, such as explaining the purpose of tests and treatment in detail.
The main strength of the follow-up study is the large number of participants and the high participation rates which resulted in sufficient statistical power in the multivariate analyses. Additionally the participating public clinics covered >60% of all public fertility treatment in Denmark.
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Acknowledgements |
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Submitted on June 26, 2003; accepted on September 10, 2003.