All Survey Recipients
After electronic medical record screening for eligibility criteria, surveys were sent to 200 patients with prolactinoma and 200 patients diagnosed with nonfunctioning pituitary adenoma. The cohort of patients with nonfunctioning pituitary adenoma selected for mail-in survey had a higher percentage of women in comparison with patients with prolactinoma (64 vs 55%, P = 0·0004), but no difference in mean age (P = 0·07) or percentage of responders (P = 0·6) ( Table 1 ). Within the groups, the response rates were not different between men and women (Group A P = 0·14, Group B P = 0·98), however, responders were older than nonresponders women (Group A P = 0·006, Group B P = 0·04) ( Table 2 ).
After sending 200 surveys to each group, 79 subjects in Group A (39·5%) and 76 subjects in Group B (38%) returned completed surveys. As two patients in Group A and five patients in Group B had not returned the accompanying consent form, they were not included in the study. In addition, one patient from Group B was identified as having a diagnosis of acromegaly upon chart screening and was excluded from analysis. Thus, 77 patients from the prolactinoma group and 70 patients from nonfunctioning pituitary tumour group were analysed.
Table 3 presents basic demographic and clinical data of the study subjects. When compared with the control group, the proportion of males was higher in Group A (61 vs 39%, P = 0·008). There were no differences in age, size of tumour on the last imaging study, prevalence of underlying psychiatric disorders or history of pituitary surgery. More patients suffered from associated appropriately treated central hypogonadism in the Group A (32 vs 14%, P = 0·01); however, the percentage of other pituitary hormonal deficiencies was similar in Groups A and B.
Patients with prolactin-secreting adenomas (Group A) were diagnosed at least 12 months prior to participating in the study. All had a history of current or past treatment with DAs for a median time of 94 months (ranges 5–455 months). At the time of survey completion, 22 subjects (29%) were on bromocriptine, 41 (53%) on cabergoline and 14 (18%) were not currently being treated with a DA. Median weekly dose was 1 mg (ranges 0·25–4 mg) for cabergoline and 26·25 mg (ranges 8·75–70 mg) for bromocriptine.
The frequency of one or more ICDs in Group A was 24·68%. There was no relationship between the duration of treatment (P = 0·83) or type of DA used (P = 0·33) and associated ICD, based on survey threshold. In Group A, there was no relationship to sex (P = 0·59), tumour size at diagnosis (P = 0·1), tumour size at the last imaging follow-up (P = 0·29) or the shrinkage of the tumour (P = 0·3). The total of positive answers to ICD questions was inversely related to subjects' age in Group A (P = 0·008); however, age was not associated with reaching a threshold for a positive ICD screen (P = 0·13). History of pituitary insufficiency, pituitary surgery or psychiatric disorders were not associated with development of ICD positive screen (P = 0·17, 0·57 and 0·77).
The frequency of one or more ICDs in Group B was 17·14%. Women had higher prevalence of positive ICD screen when compared with men (25·6 vs 3·7%, P = 0·02). Age (P = 0·57), tumour size (P = 0·89), pituitary insufficiency (P = 0·11), pituitary surgery (P = 0·29) or psychiatric disorders (P = 0·09) were not associated with ICD screen positivity.
When compared with Group B, Group A had an increased rate of hypersexuality (12·99 vs 2·86%, P = 0·03); frequency of other ICDs was otherwise similar ( Table 4 ). Individual data of Group A patients who developed hypersexuality are illustrated in Table 5 . Of 10 patients in Group A who had an ICD screen positive for hypersexuality ( Table 5 ), only 1 had hypogonadism and was on intramuscular testosterone injections every 2 weeks with (mid-injection total testosterone level of 265 ng/dl (240–950 ng/dl). Of 10 patients in Group B who had hypogonadism (appropriately treated), none developed hypersexuality.
Due to the significant difference in sex distribution between the two groups, a separate subgroup analysis was performed on men and women. Men in Group A had a significantly increased frequency of ICDs when compared with men in Group B (27·7 vs 3·7%, P = 0·01). No differences in rates of total ICDs were found between women of Groups A and B (20 vs 25·6%, P = 0·78).
Of the 31 subjects with a positive ICD screen, 23 (74·2%), including 18 of the 19 positive-screened patients in Group A, were able to be reached for a phone interview, and the results were confirmed in all. Six patients had already been off DAs at the time of interview, and eight patients planned to discuss lowering the dose and/or other therapeutic options with their endocrinologist. The interviews indicated that perceived intensity of symptoms varied between patients. For example, we discovered that one subject who developed an excessive gambling habit stopped his DA without physician advice several months prior to receiving the survey due to suspicion that this was medication related. He reported that his urge to gamble disappeared gradually in 4–6 weeks. Due to the high level of personal and financial distress, his excessive gambling caused, the patient would not consider a DA therapy retrial, and was considering other therapeutic options with his physician. Two subjects with newly developed hypersexuality after DA initiation confirmed that symptoms led to promiscuity, financial losses (in both cases) and loss of job (one case); however, both had declined reconsideration of therapy at the time of discussion. In another two cases, while confirming positive answers on the ICD screen, patients denied any personal difficulties and could not confirm any temporal relationship of their ICD symptoms to DAs.