Abstract
Patients with pituitary tumors frequently complain of quality of life problems despite normal hormonal blood levels. The goals of the study were to determine whether the sickness-related quality of life reported by these patients was poorer than that expected by the general population and whether some of these complaints and areas of dysfunction were more troublesome than others. Forty-three patients from a southeast Michigan pituitary disorders support group volunteered to complete a survey focusing on demographic, disease data and common complaints plus the Sickness Impact Profile (SIP). The results indicated that mental and physical fatigue were the most troublesome symptoms with sleep and libidinal complaints also of significant concern. The SIP indicated significant discontent among patients with regard to overall quality of life. Although this observational investigation seemed to underscore the fact that patients with pituitary tumors have a decreased quality of life despite apparently normal hormonal status, further subgroup analysis and subsequent surveys will be required to determine the actual significance of these findings.
Pituitary tumors generally are treatable and, for practical purposes, benign in terms of morbidity and mortality. However, many individuals who have undergone treatment for these tumors report a number of persistent difficulties and delays in obtaining workup and treatment for symptoms resulting from the perception on the part of the medical community that long-term sequelae are infrequent or minor. We sought to illuminate and document these difficulties to facilitate diagnosis, treatment, and research in this area. As a first step, we surveyed individuals in this group and other patients in contact with the group to understand the specificity and range of problems and symptoms.
Pituitary tumors cause far-reaching disruptions in the hypothalamic-pituitary-target gland axis. Hormones along this axis play roles in general well-being, response to physical and psychological stress, metabolism and growth, and sexual drive and reproductive function.1 Important differences in outcome related to size of tumor and the hormones secreted by the tumor can make it difficult to generalize from follow-up studies in undifferentiated clinical groups. However, the literature raises the possibility that many patients with treated pituitary tumors experience long-lasting compromise in quality of life.2,3
The majority of patients have microadenomas, usually prolactinomas, and standard management consists of surgery, radiation, and medication. Although hormone replacement is thought to be curative of symptoms in most cases, there is a dearth of studies demonstrating alleviation of the low sex drive, poor sexual function, and apathy that may occur before surgery.4
Patients with both small and large tumors secreting growth hormone or corticotropin experience more dramatic symptoms. Before treatment, frank mood and memory disorders, sleep apnea, and fatigue are among the symptoms experienced by individuals with acromegaly, resulting from excessive growth hormone secretion. Before treatment, individuals with Cushing's disease (excessive corticotropin secretion due to pituitary adenoma) are known often to manifest memory and executive dysfunction, in addition to mood disorder.5,6
Treatment of larger tumors producing mass effect typically requires surgery, radiation treatment, and hormone replacement. Some patients in this group appear to have null tumors, or pituitary tumors, which do not secrete known hormones.1 Individuals with macroadenomas face a higher risk of complications from the tumor and treatment. Continued tumor growth sometimes requires further treatment. In addition to the symptoms arising from the tumor itself, mass effect and invasive treatment result in additional symptoms such as visual field deficits, cranial nerve syndromes, headache, and sometimes seizures with macroadenomas.1 There is more widespread awareness of continuing difficulties in these patients, but there is a lack of group studies to characterize the problems encountered.
Individual case studies have documented a wide variety of mood and cognitive disorders before and after resection and radiation therapy for pituitary tumors. Common medications for pituitary disease, such as bromocriptine, also are known to produce florid disturbances, such as psychosis, in some patients.7 However, given the rapid evolution of treatments, it is difficult to generalize from these older reports to the experience of patients currently undergoing treatment and follow-up.
The literature on quality of life sequelae after diagnosis and treatment of patients with pituitary tumors is in its infancy. The extent to which quality of life problems may be related to compressed brain structures responsible for cognitive and emotional function, effects of hormonal imbalance, postsurgical disruption of interconnecting neurotransmitter pathways, adverse reactions to medical therapy, and delayed effects of radiation therapy remains unknown.
Most patient complaints relating to quality of life fall into a category of disease considered soft science, based primarily on a lack of understanding on the part of caregivers and standardization of related terms. Therefore, information in the available literature is not strictly comparable and the lack of sufficient numbers of evaluated patients, preliminary project designs, and physician biases further compounds the problem.
In a large southeastern Michigan pituitary disorders support group, we observed a staggeringly high number of patient complaints, despite many patients reporting that laboratory testing indicated adequate medical and hormonal treatment. Given the relatively high incidence of pituitary tumors in the general population and that the majority of these tumors can be controlled, if not cured, the negative impact these problems have on patient outcomes is enormous and, unfortunately, largely unnoticed.
Health-related quality of life (HRQOL) can be defined as "the subjective satisfaction expressed or experienced by an individual in his physical, mental and social situation (even though these may be deficient in some manner),"8 or as "the subjective experiences or preferences expressed by an individual or members of a particular group of persons, in relation to specified aspects of health status that are meaningful, in definable ways, for that individual or group."9
Because most of the complaints expressed by patients fall into the general category of HRQOL, we chose to survey a group of patients undergoing treatment for pituitary tumors to understand the specificity and range of problems and symptoms. The goals in this study were twofold: first, to determine whether the sickness-related quality of life reported by patients with pituitary tumors was poorer than that experienced by the general adult population and, second, to know whether some complaints and areas of dysfunction were more troublesome than others.