Access to infertility care in Brazil: validation of a questionnaire for a bioethical discussion

Fifty-four questionnaires were administered over a period of two months. Ten questionnaires were incomplete or with unsatisfactory answers and 44 questionnaires were fully completed and with adequate answers to the questions. Only 3 items led to no response or inconsistent answers, which were about treatment location, duration of infertility, and number of previous treatments (Table 1).

Table 1 Observed inconsistencies in the questionnaire

Age and duration of infertility data are presented in Table 2. Analysis of the partners showed that the lowest age for the wives was 24 years old and the highest age was 48 years old. In relation to the husbands, the youngest was 24 years old and the oldest was 53 years old. The time of infertility varied between 1 year and 20 years, as shown in the table below. Most wives were older than 35 years and husband age was normally distributed (p > 0.05 in a Kolmogorov Smirnov test). Most patients reported less than 10 years of duration of infertility.

Table 2 Age of the partners and duration of infertility

Demographic data are presented in Table 3. In total, 33% of wives and 29.6% of husbands had completed higher education, and all wives reported at least having completed high school education. Most wives (68.5%) and husbands (72.2%) were self-declared white. Regarding the number of previous treatments, three couples indicated numerous attempts and, therefore, were unable to inform the exact amount. Only 2 couples indicated more than 5 attempts and most of the participating couples (56%) indicated 1 or 2 attempts. A total of 13% of couples had previous paternity/maternity. Moreover, 50% of couples presented with a female cause of infertility, 14.8% a male cause, 18.5% a mixed cause, and 9 couples presented with unexplained infertility (Table 4).

Table 4 Number of previous treatments, infertility cause and previous paternity/maternity

When asked about how infertility has impacted the couple’s life, 38.9% stated that infertility strengthened the couple’s relationship, 18.5% stated that the relationship had weakened and 42.6% believed that infertility did not impact the relationship either positively nor negatively. Regarding anxiety or stress due to infertility and the search for treatment, most couples (51.9%) admitted moments of anxiety from the beginning and 31.5% said they developed anxiety only after treatment attempts. Despite this, 72.2% of couples consider they have a good quality of life.

Half of the couples (50%) sought treatment in a different city from which they reside. In accordance, 42.6% of the participants reported that access to specialist and medical services was easy only after indication or assistance, and 22.2% considered it difficult to access. Additionally, even though the vast majority of participants (40.7%) rated access to an assisted reproduction clinic and treatment options as easy, 59.3% experienced difficulty or ease only after searching in another city. Even so, more than half of the couples (55.6%) did not think about giving up on treatment due to access difficulties (Table 5).

Table 5 Impact of infertility and difficulty accessing treatment

Regarding perception of medical care, most couples (68.5%) felt welcomed when seeking medical services and treatments, and the rest of the couples were able to express whether they felt helpless or were welcomed after frustrations. Interestingly, only 26% of the couples did not seek more than one medical service, 37% sought care where they were best received and 37% sought care that was financially adequate. An important point about the search for financially adequate treatment is that 83.3% of couples were unaware of free treatment opportunities in other countries.

Furthermore, among the 5 difficulties in accessing medical services and/or treatments, financial issue (high cost of treatments) was the most selected alternative (57.4%). Location (11.1%) and discrimination (1.9%) were also recorded. Exemplifying the financial difficulty, 74.1% of couples recognized an impact on the family budget due to the cost of treatment and 55.6% needed a period between the indication of treatment and the completion of the procedure to raise financial resources. Most (61.1%) of participants did not need to resort to loans or dispose of assets to pay for treatment and 63% did not seek coverage by a health plan or the public health system for assisted reproduction treatment (Table 6).

Table 6 Difficulties in accessing medical services and/or treatments

When asked about their socioeconomic status and family income, the vast majority of couples indicated tranquility, where 81.5% said they had a good socioeconomic situation, 3.7% declared an excellent situation and 14.8% thought their socioeconomic situation was bad. A family income between R$ 3,000 and 5,000 was observed in 53.7% of responders, 31.5% of the couples indicated that they had a family income between R$ 5,000 and R$ 10,000, 7.4% did not fit into the income ranges presented by the questionnaire, 3.7% answered that they had income between R$ 10,000 and R$ 15,000, and 3.7% between R$ 15,000 and R$ 20,000. No participating couple reported having a family income equal to or above R$ 25,000 (Table 7).

Table 7 Socioeconomic status and family income

Additionally, in order to know the range of the population that seeks treatment for infertility, the questionnaire showed that three out of four couples (75.9%) know friends or have acquaintances who have sought treatment, and several participating couples (37.5%) pointed out that these friends were not able to access infertility treatments.

Correlation analysis showed that 95.7% of patients who sought assistance at another city than where they live had already attempted at least one treatment cycle, while only 68% of patients who sought treatment where they lived had already attempted at least one treatment cycle (p = 0.024).

It is important to note that, in accordance with results presented above, 61.5% of couples who sought treatment in another city/state found it easy to access the assisted reproduction clinic and treatment options only after seeking treatment in a different city from which they reside. Also, 57.7% of couples that did not seek treatment in another city, considered they had easy access (p = 0.003).

The questionnaire also reported that 42.3% of couples who did not seek treatment in another city sought more than one medical service to treat infertility. Furthermore, 46.2% of couples who sought treatment in another city were looking for a more receptive environment (p = 0.032). 73.1% of couples who responded they had not sought treatment in another city and 92.3% who had reported they were not aware of free treatment in other countries. However, expectedly, 26.9% of couples who did not find treatment in another location admitted to having knowledge about the gratuitousness in other countries (p = 0.048).

Finally, it was possible, by this questionnaire, to obtain information about the main difficulties in accessing medical care to treat infertility, where 80.8% of couples who did not seek treatment in another city pointed out that the high cost is the greatest adversity for carrying out the treatment. In accordance, 30.8% of respondents who selected to have sought treatment in another city also found the financial issue as the main limiting factor. Furthermore, it was shown that 23.1% of the couples in the same group indicated the location, that is, living in a city with few resources, as the greatest difficulty encountered by the couple to achieve treatment (p = 0.003).

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