Patients
In this questionnaire-based study, participants were a convenience sample of cancer patients recently diagnosed (less than 6 months) or under treatment (more than 1 year) by chemotherapy, radiotherapy or surgery from two large referral hospitals in Tehran, Iran. Cancer patients less than 18 years of age were recruited from the Ali-Asghar Hospital, a specialized center for pediatric oncology, and those older than 18 years of age were recruited from the Imam-Khomeini Hospital, a cancer institute for adults. All data were gathered between November 2017 and January 2018.
Study questionnaire
Based on earlier published data on the issue of FP in adult cancer patients [17] and in parents of pediatric patients with cancer [18], and on the basis of 8 in-depth interviews conducted with a panel of embryologists, gynecologists, and oncologists familiar with FP options in patients with cancer, a 25-item self-administered questionnaire was developed to measure self-reported knowledge and attitudes to FP in parents of cancer patients < 18 years and in cancer patients ≥ 18 years. Feasibility of the self-completed questionnaire was confirmed by a number of obstetricians and gynecologists, embryologists, and oncologists. In addition, non-physician staff reviewed the questions for clarity. Both the mother and father of cancer patients < 18 years were asked to fill out the questionnaire together. When this was not possible, the relationship between the person(s) who filled out the questionnaire and the patient < 18 years was noted. Adult cancer patients ≥ 18 years responded to the questions themselves. The first part of the questionnaire asked subjects to provide demographic information (sex, age, occupational status, marital status, number of children), duration of suffering from cancer and any infertility history before cancer diagnosis. Parents of cancer patients < 18 years completed the questions on demographic and clinical characteristics of their children.
The second part of the questionnaire firstly included 7 items (yes/no responses) on the subject’s knowledge of FP options, such as cryopreservation of ovarian tissue, oocyte, sperm and testicular tissue, embryo cryopreservation, pre-treatment with Gonadotropin-releasing hormone (GnRH), and ovarian transposition. Secondly, it included three awareness questions (yes/no responses) on the availability of clinics providing FP services in Iran, effects of cancer treatment on fertility, and the possibility of genetic transmission of their cancer to the next generations. Thirdly, the practice behavior of the oncologists treating the cancer patients studied was examined using the question “Have you been referred to reproductive specialists for preserving your fertility (your child's fertility) by your physician?” (yes/no responses). Fourthly, the cancer patients were asked to respond to questions on attitudes towards FP. The questions were as follows: “How important is preserving fertility in cancer patients?”; “How important is use of FP options in cancer patients?”; and “What is the success rate of FP options in cancer patients?” Response options for these three questions were 4-point Likert scales (greatly, usually, rarely, never) scored from 1 for never to 4 for greatly. The next question was on the priority to be given to cancer treatment and starting FP after cancer diagnosis. Participants were allowed to choose an option from therapeutic measures, FP, and no idea. Another question was “If you (your child) become(s) infertile after cancer treatment and you were not aware of possible FP options before starting treatment, who is responsible for the problem?” Participants were asked to select one option from cancer patient, patient’s family, physician, and fate. The last question asked about characteristics and clinical conditions of the cancer patients that might influence the use of FP. These included the risk of recurrence of the cancer in the future, lack of access to FP services, lack of information on FP options in cancer patients, financial cost, and disappointment with the treatment process and prognosis. Responses were on a 4-point Likert scale (greatly, usually, rarely, never), with scores ranging from 1 for never to 4 for greatly.
Statistical analysis
Frequencies were summarized for categorical variables. Continuous variables were expressed as mean ± standard deviation (SD) and 95% confidence intervals (CIs). Chi2 tests of independence were used to assess relationships between categorical variables derived from answers to yes/no questions. Attitude questions with responses on a 4-point Likert scale were compared using the independent samples t test. The means of these scores indicate the attitude of the population studied. Heeren and D’Agostino, in 1987, demonstrated that this t test is robust for ordinal scaled data [19]. All analyses were carried out using STATA (version 12.0; Stata Corp. LP, College Station, TX). P values of less than 0.05 were considered to indicate statistical significance.