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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 Hospital Detroit, Michigan
Introduction
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.
Method
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.
Materials
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.
Results
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.
Discussion
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.
Conclusions
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.
| Table
2 |
| Mean
Ratings on Symptom and Complaint List items (Standard Deviation
|
| |
Whole |
Prolact |
Cushing's |
Acromeg |
Null |
Other |
| 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.
Table
3 |
Sickness
Impact Profile Percent Impairment Scores
|
|
Total |
|
Prolactinoma |
Other |
|
|
| SIP Score |
Mean |
SD |
Mean |
SD |
Mean |
SD |
| Body care/movement |
5.7 |
8.5 |
2.6 |
7.6 |
8.9 |
8.3 |
| Mobility |
8.5 |
15.2 |
5.6 |
14.8 |
11.6 |
15.4 |
| Ambulation |
9.2 |
12.5 |
5.3 |
10.3 |
13.3 |
13.4 |
| Emotional behavior |
25.6 |
26.4 |
15.6 |
24.4 |
36 |
25 |
| Social interaction |
24.4 |
20.9 |
20.2 |
20.4 |
28.7 |
21.1 |
| Alertness behavior |
38.4 |
32.4 |
30.2 |
28.9 |
46.9 |
34.3 |
| Communication |
6.5 |
12.6 |
4.8 |
14.4 |
8.2 |
10.4 |
| Sleep and rest |
20.2 |
19.2 |
17.4 |
20.3 |
23.2 |
18.1 |
| Home management |
11.5 |
15.6 |
7.4 |
12.7 |
16 |
17.5 |
| Work |
27 |
26.7 |
14.4 |
20.8 |
40.1 |
26.1 |
| Recreation/Pastimes |
25 |
22.3 |
16 |
19.8 |
34.6 |
21.2 |
| Eating |
2.2 |
4.3 |
2.1 |
4.7 |
2.2 |
3.8 |
| Physical dimension |
7.1 |
9.7 |
3.8 |
8.8 |
10.5 |
9.7 |
| Psychosocial dimension |
24 |
19.7 |
18.4 |
19.6 |
21 |
12.6 |
| Other dimension |
15.6 |
13.2 |
10.4 |
11.9 |
21 |
12.6 |
| Overall SIP |
15.6 |
13 |
11 |
12.7 |
20.5 |
11.8 |
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).
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