Quality of Life in Patients with Pituitary Tumors: A Preliminary Study
Anne Baird, Ph.D., Teresa Sullivan, Saeed Zafar, M.D. , Jack P. Rock, M.D.
Departments of Psychiatry, Endocrinology, Neurosurgery
Henry Ford HospitalDetroit, Michigan
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 due to the perception on the part of the medical community that long-term sequelae are infrequent or minor. We surveyed individuals in this group and other patients in contact with the group to understand the specificity and range of problems and symptoms.
In a large southeastern Michigan pituitary disorders support group, we observed a staggeringly high number of patient complaints, although many patients reported that laboratory testing indicated adequate medical and hormonal treatment. Given the relatively high incidence of pituitary tumors in the general population and the fact 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.
As 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.
Through publication by announcement in meetings of the Pituitary Tumor Support Group and through an announcement on the website, 92 individuals requested a survey to participate in the study. We did not collect identifying data on the individuals who requested a survey or those who returned it. Of 92 surveys, 43 were returned for a response rate of 47%.
On average, our respondents were 40 years old (SD = 9), but they ranged in age from 21 to 65. The average participant had a college education (M = 16 years; SD = 2; range = 9 to 21 years). Most individuals in the study were married. Of the participants, 30 were women, 12 were men, and 1 didn’t report gender.
Each participant completed two scales, one a list of symptoms and problems specific to patients with pituitary tumors and the other a very broad-based index of life quality, the Sickness Impact Profile. The scale of symptoms was based on a list compiled by the leader of the Pituitary Tumor Support Group (T. Sullivan). Using a model developed by a colleague in studying neurobehavioral problems reported by athletes , as often as possible complaints were described in the words used by the support group members, and we asked respondents to rate each one on a 0 (none) to 6 (severe) scale. Symptoms were randomly ordered on the list. Each respondent also circled the single most troublesome complaint on the list and added major complaints not on the original list. Participants also indicated whether they had experienced difficulty in obtaining referrals for needed health care because of a professional’s inability to discern need.
The second measure was the Sickness Impact Profile (SIP), designed to be a broadly- and behaviorally-based measure of life quality. The SIP yields an overall score, a Physical, Psychosocial, and Other dimension score, and 12 category scores. Each item endorsed by the respondent is weighted by a value meant to reflect the severity of the dysfunction. Each item endorsed adds to a particular Category and Dimension score as well as to the overall score.
Symptom and Complaint List. As shown in Table 2, in which symptoms are listed in order of decreasing mean ratings for the whole group, respondents tend to agree on the ratings of the 20 symptoms and do not rate all symptoms as equally troublesome. The range of mean ratings falls from minimal to moderate. For the 38 participants who rated each symptom, the mean item rating was 2.58, suggesting that respondents do not uniformly rate all symptoms as present or severe.
Mental or physical fatigue appeared to be the single most troublesome symptom for the sample as a whole, as well as for the prolactinoma, Cushing’s disease, and other/mixed subgroups. Sleep difficulties and libidinal changes also received fairly high mean ratings across the entire group.
Responses to query about the single most troublesome complaint on the list also indicated that fatigue is especially vexing and salient for this group as a whole. Twenty-three percent of respondents identified fatigue as the most troublesome symptom, followed by 11.8% of the sample endorsing one of the following symptoms: mood disorder, sleep problems, or unexplained pain. Thirty-four respondents in all followed instructions to identify the most troublesome symptom.
Like the analyses with the Symptom and Complaint List, strong trend towards reporting some areas of dysfunction more than others. A multivariate analysis of variance confirmed that there were significant differences among the 3 dimension scores of the SIP (Physical, Psychosocial, and Other Dimensions) (Wilks’ Lambda = .35, F (2, 40) = 37.42, p = .000), but there was no significant interaction between the SIP Dimensions and the tumor type (pure prolactinoma versus everything else). Within-subjects contrasts further demonstrated that the Psychosocial Dimension mean score diverged significantly both from the Physical Dimension (F (1, 41) = 55.76, p = .000) and from the Other Dimension (F (1,41) = 16.52, p = .000). Mean Dimension scores (% impaired) for the whole sample were 7.1 (SD = 9.7) for the Physical Dimension, 15.6 for the Other Dimension (SD = 13.2), and 24.0 (SD = 19.6) for the Psychosocial Dimension. Post hoc contrasts confirmed that the mean percent of dysfunction on the Psychosocial Dimension was significantly higher than for the Physical Dimension (F (1,41) = 55.8, p=.000) and than for the Other Dimension (F (1,41) = 16.52, p = .000). In other words, although the pure prolactinoma group reported less impairment on each dimension, the relative dysfunction in these three different areas was similar for the two tumor groups. There appears to be considerable consistency in the areas of difficulty related.
The category scores also show that the average individual in our sample also reports dysfunction in a number of other categories, including Emotional Behavior and Sleep and Rest, categories that may relate more specifically to the Mood Disorders and Fatigue complaints of many in our sample on the Symptom Checklist. There is no overall category on the SIP that relates specifically to sickness-related sexual dysfunction. However, a single item on the Social Interaction subscale relates specifically to a decline in sexual function. In our sample of 43 individuals, 29 endorsed this statement.
Although the actual incidence rates of HRQOL complaints in patients with pituitary tumors have not been documented, a study of 116 patients with pituitary insufficiency ranging in age from 18-38 years revealed that the rate of unemployment was approximately 3 times higher than expected and the percentage of married individuals less than 30% of that expected.
Other reports point to a decreased psychosocial functioning in young adults with childhood-onset pituitary insufficiency even after presumably adequate treatment with growth hormone (until they reached normal height). Scrutiny of other populations with the SIP reveals that the present participants are reporting especially great difficulty in the cognitive area. Comparison of the overall SIP score, Psychosocial Dimension, and Alertness Behavior score with those of other groups suggested more marked difficulties in all three areas than those reported by samples of individuals with multiple sclerosis before an exercise intervention. For a sample of COPD patients and a sample of frail home-bound elderly, the mean Alertness Behavior percent impairment was lower than in the pituitary patients, even though the mean overall SIP percent was higher in both studies.
The kinds of difficulties endorsed have all been mentioned in the literature on patients with pituitary tumors, although the hope has been that these symptoms usually remit with treatment. In contrast, we find that even individuals with the mildest of pituitary tumors on average experience significant dysfunction in day-to-day life.
This preliminary study provides a basis for further studies to document these problems, to understand the neurobehavioral basis of these complaints, and to devise interventions. A significant limitation to the interpretation of results in this data set is the inability to validate the patient demographics or clinical disease status. This investigation served to confirm our general clinical impression relative to treated patients with pituitary tumors but the next iteration of the survey will have to focus on a subgroup of pituitary tumor patients whose demographic and medical data have been documented, thereby enabling more critical evaluation of the patient responses. This, in turn, may allow better investigations of the medical and psychosocial bases of these complaints.
Mean Ratings on Symptom and Complaint List items (Standard Deviation
|Fatigue||4.3 (1.8)||3.8 (1.7)||5.3 (.6)||2.7 (3.2)||4.8 (1.1)||5.7 (.5)|
|Sleep problems||3.8 (2.1)||3.1 (2.1)||4.7 (.6)||2.7 (3.2)||4.3 (2.0)||5.4 (.8)|
|Change in libido||3.5 (2.1).||3.1 (2.1)||4.7 (1.5)||3.0 (2.6)||4.6 (1.7)||3.6 (2.6)|
|Mood disorders||3.4 (2.0)||3.0 (2.0)||3.0 (1.0)||2.5 (3.0)||5.0 (1.2)||4.2 (1.7)|
|Depression||3.1 (2.0)||2.8 (2.0)||3.3 (.6)||2.0 (2.4)||4.4 (1.3)||3.7 (2.0)|
|Memory loss||3.1 (1.9)||2.8 (1.7)||2.3 (2.5)||1.7 (2.1)||3.6 (2.3)||4.5 (1.2)|
|Headaches||2.9 (2.0)||2.5 (1.9)||2.3 (1.5)||2.2 (2.6)||3.6 (2.3)||4.2 (1.7)|
|Apathy||2.8 (2.2)||2.4 (2.2)||2.0 (1.0)||1.2 (1.5)||3.8 (1.8)||4.6 (1.9)|
|Attentional problems||2.8 (2.0)||2.2 (1.9)||4.3 (2.1)||1.2 (1.9)||4.4 (1.1)||3.6 (1.6)|
|Low self-esteem||2.7 (2.2)||2.3 (2.2)||3.0 (2.0)||.5 (1.0)||3.8 (1.6)||3.9 (2.5)|
|Unexplained pain||2.4 (2.4)||1.8 (2.1)||4.3 (2.1)||2.5 (3.0)||3.2 (2.2)||2.9 (2.9)|
|Social isolation||2.4 (1.9)||1.9 (1.9)||2.7 (2.3)||2.2 (1.7)||3.0 (1.4)||3.1 (2.1)|
|Crying spells||2.3 (1.8)||2.1 (1.8)||2.3 (.6)||1.0 (2.0)||3.6 (1.1)||2.9 (2.2)|
|Cognitive impairment||2.2 (2.1)||1.6 (1.8)||3.0 (1.7)||.2 (.5)||4.2 (1.6)||3.3 (2.4)|
|Hopelessness||2.0 (2.0)||1.6 (2.0)||1.0 (1.0)||.5 (1.0)||4.0 (1.0)||3.1 (2.2)|
|Visual problems||1.9 (2.0)||1.9 (1.9)||2.3 (2.1)||.5 (1.0)||2.0 (2.7)||2.7 (2.1)|
|Panic||1.8 (2.1)||1.4 (1.7)||.3 (.6)||1.5 (1.9)||3.8 (2.4)||2.6 (2.6)|
|Obsess ive thoughts||1.8 (2.1)||1.7 (2.0)||.7 (1.1)||.7 (1.0)||3.0 (2.0)||2.1 (2.7)|
|Rage||1.6 (1.6)||1.4 (1.7)||3.0 (2.0)||1.0 (1.4)||1.8 (1.6)||1.9 (1.2)|
|Thoughts of suicide||1.1 (1.8)||.5 (1.2)||.0 (.0)||.0 (.0)||2.8 (1.9)||2.5 (2.5)|
Note. Whole = whole sample (N = 43); Prolact = prolactinoma (N = 22); Cushing’s = Cushing’s disease (N = 3); Acromeg = acromegaly (N = 4); Null = null or nonfunctioning tumor (N = 5); Other = tumor type other than above or mixed tumor type (N = 8). Symptoms are listed in table in order of decreasing average ratings for the whole sample. Fatigue = Fatigue, physical or mental; Sleep problems = Sleep problems, including insomnia and increased urge to sleep; Change in libido = Change in libido or sex drive; Apathy = Apathy, including excessive submissiveness; Visual problems = Visual problems, including trouble focusing and double vision.
|Sickness Impact Profile Percent Impairment Scores|
|Sleep and rest||20.2||19.2||17.4||20.3||23.2||18.1|
Note. There were 43 individuals who completed the Sickness Impact Profile (Total category above). Twenty-two individuals had prolactinomas only (Prolactinoma category). The other 21 participants had prolactinoma and one or more other pituitary tumor types or another pituitary tumor type alone or in combination (Other category).