- Email: [email protected]
Chronic phantom and stump pain among american veterans: results of a survey
83
Pain, 18 (1984) 83-95 Elsevier
PAI 00572
Chronic Phantom and Stump Pain among American Veterans: Results of a Survey Richard
A. Sherman
*, Crystal
J. Sherman
** and Laura
Parker
***
* Psychophysiology Service, Department of Clinical Investigation, Dwight David Eisenhower Army Medical Center, Fort Gordon, Go. 30905, ** Medical Research Service, Veterans Administration Medical Center, Augusta, Go. 309I0, and *** Department of Clinical Investigation, Dwight David Eisenhower Army Medical Center, Fort Gordon, Ga. 30905 (U.S.A.) (Received
1 February
1983, accepted
13 June 1983)
Summary Questions concerning stump, phantom and other pain problems as well as demographic data were mailed to 5000 Americans whose amputations were connected with military service. Fifty-five percent responded and of these, 78% reported phantom pain. No predisposing factors, other than presence of stump pain, correlated with the presence or severity of phantom pain. Of those receiving treatment, only 1% reported lasting benefits from any of a multitude of treatments attempted.
Introduction We recently reported the results of a trial survey in which 1200 American veteran amputees were mailed a questionnaire regarding chronic phantom and stump pain problems [13]. The results indicated that at least 85% of the respondents had persistent phantom pain sufficiently severe to require withdrawal from social and work environments for considerable periods of time each year. Phantom pain did not tend to decrease significantly over time after amputation. These findings are in sharp contrast with the literature which generally reports that although between 25
The opinions or assertions contained herein are the private views of the authors and are not to be construed as official or as reflecting the views of the United States Department of Army or the Department of Defense. Correspondence and reprint requests to: Captain Richard A. Sherman, Ph.D., MSC, Department of Clinical Investigation, Dwight David Eisenhower Army Medical Center, Fort Gordon, Ga. 30905, U.S.A.
0304-3959/84/%03.00
@ 1984 Elsevier Science Publishers
B.V.
84
and 98% of amputees have occasional discomfort in their phantoms [2,5,10,17], only 0.5-58 have severe or debilitating phantom pain [4,6,9,17]. Respondents reporting phantom pain were similar to those without it in: (a) years since amputation; (b) use of and attitude toward medical facilities and medicine for non-amputation related problems; (c) reason for amputation; (d) current age or age at amputation; (e) location of amputation; (f) pain before amputation; or (g) other factors frequently correlated with occurrence and persistence of phantom pain. The sole exception was a minor correlation with the presence of stump pain. Respondents also reported that most treatments for phantom pain were useless except those designed to correct problems such as back pain which referred pain into the phantom. This conclusion supported our earlier findings in an analysis of the literature [12] and in a respondent survey of physicians active in treating amputees [16]. Nothing in the above work or in our clinical treatments of this disorder [11,14,15] led us to expect the magnitude of disability seen in the trial survey. The group surveyed in that study was partially self selected in that they were all members of a veterans’ amputee organization. It was possible that the people joining such an organization had an unduly large proportion of problems related to their amputations relative to the population of veteran amputees as a whole. Therefore, we thought that a larger survey of the same population was warranted to insure that our relatively small group was not an abnormal sample of the population.
Methods (A) Population surveyed The U.S. Veterans Ad~nistration was kind enough to supply a list of all 25,000 known military related amputees. We randomly selected 5000 to receive questionnaires similar to those sent to the previous trial group; but individuals who had been in the trial group were excluded' from the present selection pool. The randomized design was chosen to avoid a skewed sample in which amputees having pain might be over-represented, as may have occurred in the trial group. Any selection bias should have worked to exclude individuals with pain if the trial group was, in fact, biased. We did not identify any women’s names in the list supplied. (B) The questionnaire The survey instrument is shown in Fig. 1. Each survey was sent with a stamped return address envelope and a personally addressed cover letter which cfearly requested that all recipients respond regardless of the presence or the absence of amputation related problems. The 2 page instrument was composed of questions requiring only yes/no, rating scale, or single phrase answers. It requested information on (a) demographic characteristics; (b) the respondent’s medical and amputation history; (c) use of a prosthesis; (d) use of medicine and/or use of medical practitioners for any pain not related to the amputation; (e) relationships with amputees prior to amputation; (f) pain in the amputated limb prior to amputation; (g) stump pain characteristics,
85
frequency, intensity, and duration; (h) phantom sensations; and (i) phantom pain description, location, intensity, frequency, duration, treatment, physician responses, and current needs for treatment. (C) Data analysis When normally distributed numeric data were compared, the group means, plus AMPUTEE TO
RATE PAIN
QUESTIONNAIRE
When asked obout how much pain you feel (how much you hurt), please rate the amount of pain on a scale which starts at 0 (no pain) and continues up to 10 (so much pain you would commit suicide if you hod to bear it for one more minute). The higher the number, the greater the pain. 1. Your oge: 2. Your sex:
M Cl
FU
3. Numb& of years since your amputation:
yeorr
4. About your amputation: a. Reoson for the amputation: 1) During Combat: 2) As o Result of Combat Injury: 3) Non-Combat Accident: ., -.* .. .. < 4) umer ispecltyj; b. Which limb(s) was removed: right ormnleft armm right legmleft c. Do you still hove the knee or elbow of the amputated limb?.
iegn
.......
5. Did
you hove pain in the port of the limb which was removed BEFORE the amputation? , . . . . . . . . . . . . . . . . . . . . . . . . . . . . . If yes: for how many years before the amputation?. . . . . . , , . . . _ . .
6. Did you know ony amputees before your omputotion? . If yes: who were they (for example: friend, uncle, etc.)? 7. Do you use your artificial limb regularly? Ifyes:howmanyhaurrperdoydoyouuseit?.
...........
..... ............. . . . . . . . . . . , . . , . . .
‘.......l........*........ (see explanation at top of page), how have to hove before you take medicine for the . . . . ..*.................... u wait after beginning to hurt before taking
9. When you get o heodaehe: a. On the scale of O-10, how much pain do you have before you take medicine? . . . . . . . . . . . . . . . . . b. How long do you wait before toking me&%?’ *. ’ . ’ . ’ *’ ’ ’ ’ ’ *. (in hours) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10. If you began getting a pain in your shoulder every time you moved your orm and the pain did not go owoy after taking medicine of the type kept at home (such as aspirin) or using o heating pad: o. On the O-10 scale, how much would you have to hurt before going to the doctor? . . . . . . . . . . , . . . . . . . . . . . . . _ . . . . . . . . b. How long would you wait before going to the doctor? . . . . . . . ..*..........**............*.......
PLEASE CONTINUE
ON NEXT PAGE
.
86
SURVEl
YES NO
- Pacfe 2 :,.................
GFP
PM
i
PHANTOM SENSATION NOT STUMI 1 PAIN
(a) What
If yes:
part
(b) What
or ports
of the phantom
do they feel
like
(for
do they seem
instance:
worm,
ever make you a little (c) Do the feelings NOT quite hurt)?
to come
squeezing,
uncomfortable
etc)?
(almost,
but
.
(d) We would like to know how strong the non-pai If these feelings were painful, how strong wou
....
on the O-10 scale?.
-___
PHANTOM ‘AIM OWL\
13.
Did
YOU ever
after If ye!
four
i:
hove ow
ooin
omputotion
(a) A few
at all in the Dart
iphontom
months
after
of the limb
pain-iOT
stump
the amputation,
th
.
pain)?
did the phantom
pain:
1) Goowoy?............................. 2) Decrease greatly? 3) Not (b)
How
. . .. .. ..... ....... . . ...
changed?.
often
do you hove
(c) When
the pains
(d) What
port
(e) What
do
phantom
come, how
(Seconds,
hours,
or ports
long
poln?#dayslmonth: #hours/day:.
days,
months,
of the phantom
etc)
do they seem to come from?
they feel like?
(r) On the O-10 scale, what is the worst
it ever hurt(s)?
(g)
On the O-10 scale,
what
is the least
it hurt(s)?
(h) On the O-10 scale,
what
is the usual
amount
(i)
Did the pain ever get bad enough If yes: what happened? list all treatments pain)
for
phantom
NAME/TYPE:
SUCCESS:
NAME/TYPE:
SUCCESS: SUCCESS:
(CONTINUE ON BACK IF NECESSARY) Do you ever take medicine for the phantom If yes:
1) What
(include
2) How
alcohol,
aspirin,
poin?
etc.)?
of each? the pain
hove to be before
... . ..
PLEASE Fig. 1.
YOU
VERY
comment
(not
often?
3) Success
(I) On the scale of O-10, how much will want treatment?.
THANK
pain
they worked:
NAME/TYPE:
04
.
to ask for treatment?
you received
and soy how well
.
. .
it hurt(s)?.
Did you ever talk to a doctor about the pain? If yes: whot did he tell you and what did he do?
Please
. . .
.....
(i)
stump
..
do they lost?
MUCH
FOR
on what
ANSWERING
causes
you
. .. . . . THIS
SURVEY.
& changes
your
pain.
87
and minus their standard deviations, are presented. Student’s ‘t’ tests were used when two groups with similar variations were compared. For statistical comparison of non-numeric data and frequency of occurrence data, the chi square (x2) value is presented followed by the number of degrees of freedom (u”) and the probability (P) that the sample groups compared actually represent different populations. We did not consider differences significant unless there was less than one possibility in one hundred of chance alone producing that amount of difference (0.01). However, statistical significance was used only as a guide toward evaluating clinical significance.
Results The results of this survey parallel those of our previous trial study [13]. Both sets of results are presented when appropriate and the results presented here are organized in a similar way to those presented in the trial to facilitate comparison. (A) Response rate Of the 5000 letters sent out, 140 were returned as not deliverable or appropriate. Fifty-five percent (2694) of the surveys were returned in a useful condition compared with 61% of the previous trial group. (B) Occurrence and characteristics of phantom limb pain Seventy-eight percent of the respondents unambiguously indicated the presence of phantom limb pain, An additional 7% indicated that they had phantom pain, but at least some part of their description of feelings or location led us to believe that a minimal possibility existed of their having confused phantom with stump pain despite efforts in the questionnaire design to avoid such confusion. Thus, between 78 and 85% of respondents experienced phantom pain. The conservative estimate for the trial survey was 85%. In the unlikely case that all non-responding veterans were phantom pain free, then at least 46% of the total sample had significant phantom pain. The comparable ‘worst case’ figure for the trial survey was 51%. Both rates are far above the expected rate of 5%. Of respondents reporting phantom pain, about half indicated that it decreased at least slightly with time; whereas, the other half reported either no change or an increase. One quarter of those who reported no phantom pain indicated that they initially had some, but that it had disappeared over time. Among those with current significant phantom pain, 27% felt it over 20 days per month; 10% for 11-20 days; 14% for 6-10 days; 35% for 2-5 days; and 14% for only 1 day per month. When the number of hours per day of phantom pain was questioned, 27% reported greater than 15 h; 7% reported 11-15 h; 14% 6-10; 32% 2-5; and 20% reported 1 h or less. Our trial survey had indicated that individual episodes of phantom pain ranged from virtually continuous pain (not actually episodic in nature) to episodes of only several seconds duration. These short episodes occurred at frequencies ranging from one per day to many per minute. In the present survey
INTENSITY
125
-
M
110
--
B E R
95
.-
0 F
00
--
65
.-
50
--
35
--
20
.-
N
u
K E S P 0 N D E N T S
5
VS.
DURATION
OF
PHANTOM
PAIN
T
0
USUAL INTENSITI OF PAIN I ”
a Y
t
h s
USLIALDURATION OF EPISODES
Fig. 2. Intensity vs. duration of phantom pain.
the usual length of episodes was rated as seconds by 38%, hours by 37%, days by ll%, months by 2% and continuous by 12% of respondents (Fig. 2). Respondents were asked to rate the intensity of their pains on a scale of 0 through 10 in which 0 equalled no pain and 10 equalled so much pain that they would commit suicide if they had to bear it for one more second. On this scale, the average intensity of phantom pain was rated as 5.3 (+ 4.9), the worst was 7.7 (_+ 4.6), and the least was 2.9 (L- 5.1). Some respondents rated their least pain ‘10’ (suicide level). Most of those were people who had brief episodes which were always quite severe but did not last long enough to cause them to commit suicide. The comparative distributions of usual intensity of the phantom pains and painless phantom sensations were very similar. Respondents were asked to rate the intensity of painless sensations on the O-10 scale as if they were painful. Those people who experienced both phantom pain and painless sensations were usually those with episodic phantom pain. They reported that their painless phantom sensations had an average intensity of 5.6 ( f 3.9). Those respondents who never reported any phantom pain gave their painless phantom sensations an average intensity of 5.7 ( f 3.5). The similarities in intensity, description and distribution between painful and painless
89
phantom sensations tend to confirm the impression formed as a result of our earlier work that continuous phantom pain may be an intensified version of painless sensations while episodic pain has other origins. The descriptions and locations of both phantom pain and painless phantom feelings are depicted in Table I, and the relative intensities of these sensations in Table II. Factors reported as either intensifying or inducing episodes of phantom pain included changes in various aspects of the weather (48%), chronic problems with the prosthesis (S%), mental stress (6%), fatigue (4%), intestinal and back problems (2%), and acute stump problems (1%). Twenty-six percent had no idea what caused the pain or changed its intensity. People with continuous pain tended to be in the group unable to identify causes. Respondents frequently commented that particular factors
TABLE
I
LOCATIONS each category)
AND
DESCRIPTIONS
OF PHANTOM
SENSATIONS
(percent
Painful phantom sensations only
Painless phantom
Painful sensations reported by respondents who did not report feeling any painless phantom sensations (Ig)
Painless sensations reported by respondents also reporting painful phantom sensations
29 41 12
33 39 13
42 35 10
Lower leg/arm Knee/elbow Near but not
9 5
8 5
8 4
at stump
4
2
1
8 10 32
Painless sensations reported by respondents nor reporting any phantom pain (Sg)
(W)
Reported descriptions Warm Hot
3 15
9 11
Squeeze
16
27
4 1
3 1
14
19
5 1 28
32 15
19 11
10 6
Unusual position Broken Tingle Sharp shock or shooting Cramp
reporting
sensations
Reported locations Toes/fingers Foot/hand Ankle/wrist
of subjects
TABLE
II
INTENSITY
OF PHANTOM
SENSATIONS
(percentage
reporting
each intensity)
Scale: 0 through 10 where 0 equals no pain and 10 is so much pain that the respondent suicide if it had to be borne for one more second. Intensity rating
Intensity
of phantom
Worst (SB)
limb pain
Usual intensity
of painless
would commit
sensations
Usual (Z)
Least (%)
Painless sensasations among respondents also reporting phantom pain(X)
Painless sensasations among respondents no1 reporting any phantom pain(W)
0 1 2 3
0 1.4 3.0 3.3
1.4 6.2 10.9 12.7
9.1 26.6 25.2 12.1
0.4 4.7 11.1 12.0
1.3 12.9 22.1 6.7
4 5 6 7
4.9 8.9 6.5 7.8
10.5 19.1 9.9 7.3
7.4 8.3 2.0 1.8
9.5 14.7 8.3 6.4
9.2 17.9 3.8 2.9
8 9 10
18.2 13.2 32.4
10.5 2.9 8.4
2.7 0.8 2.9
11.8 5.9 14.9
7.9 2.1 11.7
Means (SD.)
7.7
5.3
2.9
5.6
5.7
(4.6)
(4.9)
(5.1)
(3.9)
(3.5)
(especially various aspects of the weather) did not relate to changes in phantom pain. Thus, phantom pain is clearly referred from many different sources within the body. (C) Correlations between possible predisposing factors and reports of phantom pain In both this study and our previous one, there were no significant differences between those reporting and those not reporting phantom pain related to the original cause of the amputation (x2 = 4.36 with 4 df, P = 0.359). Forty-two and 46% (respectively) of the amputations were due to direct combat injuries; 33 and 39% were due to combat associated problems; 18 and 19% were due to accidents not related to combat; 7 and 6% were due to disease. There were also no differences for the presence or absence of pain before amputation or years of pain prior to amputation. Pre-amputation familiarity with amputees was not a predictive factor (x2 = 6.98 with 4 df, P = 0.14). There were no significant differences between the pain and non-pain groups related to age at amputation (x2 = 59.58 with 58 df, P = 0.42). The mean age at amputation of our previous group was 24.9 (+ 5.6) and 25.7 (k 9.1) years for our present group; both of which are very different from the age at amputation for most other amputees. As far as could be determined, the particular armed conflict that respondents had participated in did not correlate with the presence or the severity of phantom pain.
91
(0) Post-amputation predictors of persistence of phantom pain The average number of years since amputation was 26 (k 12.57) for amputees reporting phantom pain and 30 (* 12.01) for those not reporting it (F= 1.10, P = 0.245). Many respondents’ amputations had occurred only a year or so prior to receipt of the survey. Of those respondents who experienced phantom pain, 14% reported that their phantom pain had gone away and 42% reported that it had gradually decreased over time. The remainder (44%) reported no change. Thus, phantom pain cannot be assumed to decrease gradually to a non-problematic point. Age when surveyed was also not a major contributing factor in reporting phantom pain. Those reporting phantom pain were an average of 51.6 ( f 12.9) years old and those not reporting it were an average of 56.2 (+ 12.7) years old. The mean age among respondents in our trial study was 51.4 (k13.4) compared with a mean of 52.7 (k 13.1) for this group. Those reporting and those not reporting phantom pain were similar in their use of prostheses (x2 = 12.64 with 8 df, P = 0.13). This lack of difference held for above and below the knee/elbow and upper versus lower extremity comparisons. The presence of stump pain correlated highly with reports of phantom pain in the previous study. This was also the case in the present study, as 66% of those reporting phantom pain also reported stump pain; whereas, only half of those not reporting phantom pain reported stump pain. This difference is statistically significant (x2 = 42.1 with 10 df, P = 0.001) and probably of actual clinical importance as well. Those reporting phantom pain also reported more frequent stump pain (x2 = 11.4 with 3 df, P = 0.009). We are not aware of any differences in monetary compensation dependent on report of phantom pain. The amputation alone is the usual basis for amount of compensation. (E) Sensitivity and reactivity to pain unrelated to the amputation If people reporting phantom pains are more sensitive or reactive to pain than those not reporting it, they might report as pain what the other group reports as painless sensations. We evaluated this possibility by requesting information on responses to common pains not related to the amputation. There was no difference in intensity of stomach ache requiring medication (x2 = 13.4 with 14 df, P = 0.49) or in hours waited before using medication for the stomach ache (x2 = 0.59 with 3 df, P = 0.99). The same lack of significant difference occurred for headache intensity requiring medication (x2 = 4.9 with 15 df, P = 0.11) and for the time interval prior to taking medication for it (x2 = 1.87 with 3 df, P = 0.60). Less well understood shoulder pain of longer duration was rated for pain intensity and for duration before going to a doctor and produced a similar lack of difference (x2 = 4.84 with 7 df, P = 0.68). These measures of pain reactivity and sensitivity do not predict report of phantom pain. (F) Treatment of phantom limb pain Fifty-four percent of those reporting phantom pain discussed it with their physicians but only 19% of respondents were offered treatment for their phantom pain. Our previous study had found respective percentages of 61 and 17 for the
92
above situations. Two percent were told nothing could be done, 5% were told it would go away (regardless of years since onset), 24% found their questions avoided, and the rest were told it was in their heads. Many respondents reported receiving the TABLE III EFFECTIVENESS OF TREATMENTS Type of treatment
Acupuncture Alcohol (drinking) Analgesics Anterior cingual lesion Antjcon~lsants Antidepressants Biofeedback Cordotomy Electrical slim. of stump Electroshock Explanation/reassurance Increased use of prost. Heat on stump end Hypnosis Injection (unspecified) Local anesthetics Massage of stump end Narcotics (unspecific) Nerve block (unspecified) Nerve strangulation Neurectomy Novacaine blocks Peripheral nerve stim. Phantom limb exercises Phenthiazine Physical therapy Pills (unspecified) Press end of stump Psychotherapy Quinine Raise stump Refit prosthesis Relaxation training Sedative hypnotics Stump desensitization Stump revision (surgical) Sympathetic block Sympathectomy Thalamic stimulation Ultrasound at stump
FOR PHANTOM
Success (number
of reports at each level of success)
No effect
Minor temporary change
0 28 195 0 3 2 0
3 86 421 1 4 0 1 0 7 3 0 5 54 1 10 8 31 10 3 2 1 6 1 0 0 11 24 2 0 3 1 0 3 56 3 II 1 3 1 7
1 6 2 1 0 26 2 7 6 10 6 5 2 4 9 2 2 1 12 9 1 10 1 0 0 0 13 2 13 1 2 0 2
PAIN AS REPORTED IN BOTH STUDIES
Minor permanent change
Large temporary change
0
1
0
3 52 0 0 0 0 0 2 0 0 2 5 1 1 9 2 5 0 2 0 0 0 0 0
116 Q 0 0 0 0 0 0 0
0 0 0
0 2 0 0 0 0 0 0 0 0
3 0 0 1 0
0 6 2 2 0 0 0 3
Large permanent change
Cure
0
0 0
2 0 0 0 0 I) 0 0 0 2 0 0 0
0 0
0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0
93
strong implication that they were ‘insane’ if they felt pain in a part no longer present. Many respondents also commented that they .avoided discussing their phantom pain with physicians out of fear of the above response or of terrible sounding invasive treatments with the reputation of total failure in the amputee community. Because they needed care for their stumps and for other conditions, respondents were frequently unwilling to risk their credibility and relationship with their physicians by discussing phantom pain. The mean intensity of phantom pain required before requesting treatment was 7.9 ( f 2.1) for this study and 7.4 ( f 2.5) for the previous trial. Although the usual intensity of phantom pain reported was 5.3 ( f 4.9), the worst was 7.7 (k 4.6) which indicates that most people were feeling sufficient pain to want treatment at least part of the time. The success rate for treatment was dismal. When treatments provided by the medical community are considered, only 1.1% of the respondents received lasting important benefits (0.7% large permanent change and 0.4% cure); 8.9% reported minor permanent improvements; 7.3% reported major temporary help from their treatments; 5.5% reported some very minor help; and 27.4% reported no change at all. Thus, at most 8.4% of the respondents treated could be said to have been helped to any real extent. The treatments prescribed and their success rates are summarized in Table III. As it is probable that most patients do not list non-prescription pain medications and home remedies when filling out forms about treatments, it is likely that all respondents reporting pain had tried mild analgesics, heat, rubbing the stump, and other simple home remedies without positive effects or they would have mentioned them. The data reported in Table III would be likely to err on the side of lack of report of ineffective treatments rather than on leaving out effective ones. Many newly popular treatments such as acupuncture are not yet widely available in U.S. military and Veterans hospitals, and so our respondents are not as likely to have tried these novel treatments as are civilian amputees.
The results of this study are of interest at two very different levels. First, the combined results of this and the previous study provide the only major survey available of amputees’ problems with phantom and stump pain. Given the size of our sample relative to the population of veteran amputees, our results make it abundantly clear that phantom pain severe enough to cause considerable discomfort and disruption of normal life is the usual condition. for amputees. Secondly, the medical community’s lack of awareness of the degree and pervasiveness of the problem highlights basic problems in patient communication. The complexity of the phantom pain problem is indicated by the many, usually mutually exclusive, factors which influence the pain and by its varied descriptions and locations. This complexity goes a long way toward explaining why any single treatment does not work in all cases of phantom pain. We have combined all of our clinical and research data on possible mechanisms underlying referral of pain into the phantom with evidence from our amputee surveys in an article which recom-
94
mends those treatments most likely to produce lasting benefit for various types of phantom pain [14]. These data should provide a suitable starting place for researchers interested in investigating the basic mechanisms of referred pain. Our survey of physicians treating phantom pain [16] showed that most of them thought that their treatments were effective when in fact they were absolutely useless. The literature contains hundreds of articles purporting to give effective treatments for this disorder [12]. Both the physician-respondents and the treatment articles showed that there were few adequate post-initial treatment follow-ups. If the patient did not return to the same doctor, that practitioner could have been left with the idea that his treatment had worked. A 6 months’ or yearly follow-up is necessary. However, it may be nearly impossible to carry this out in the usual medical specialist practice in major United States medical centers. When the published facts are wrong, ineffective treatments can become popularized and perpetuated indefinitely. The literature is rife with articles in which complex, difficult pain problems are apparently treated with great success in small groups of patients. These articles almost always lack adequate follow-ups. The large literature on placebo treatment of pain having a clear physical basis shows that about one-third of patients report that it is effective and that the effects can last for several months [1,2,7,8]. The placebo treatments tend to be most effective with patients having compliant personalities. Most of our respondents did not discuss their phantom pain with their physicians for fear of being thought insane. Many who were treated did not tell their physicians that the treatment did not work for fear of what would be tried next. All wanted to avoid compromising the vital (survival level) care of their stumps. These results lead us to question whether some of the compliant patients from the placebo studies simply do not tell the practitioners that the experimental pain medication has been less effective than hoped in order to avoid compromising the rest of their treatment. This possibility emphasizes not only the need for good follow-up, but that the follow-up should be by non-involved parties when possible. The solution to perpetuation of poorly proven treatments is complex, but a useful first step should be the refusal by all medical journals to publish articles purporting to demonstrate the effectiveness of treatment techniques for chronic pain problems which do not include adequate follow-up data.
Acknowledgements We gratefully acknowledge the help of the Controller’s Office at the Veterans Administration Central Office who provided the names and addresses of those amputees who were kind enough to respond to our survey, the dedication of the people who sent out and then scored the surveys, especially Specialist Sutton and the Manning family, and the assistance of Major Bruce Arensman, Doctor of Veterinary Medicine, who provided computer support during the data analysis. This study was entirely supported by the Department of Clinical Investigation at Dwight David Eisenhower Army Medical Center.
95
References 1 Beecher, H., Quantification of the subjective pain experience. In: M. Weisenberg (Ed.), Pain: Clinical and Experimental Perspectives, Mosby, St. Louis, MO., 197.5, pp. 56-66. 2 Carlen, P., Wall, P., Nadvorna, H. and Steinbach, T.. Phantom limbs and related phenomena, Neurology (Minneap.), 28 (1978) 211-217. 3 Evans, F., The placebo response in pain reduction, Adv. Neurol., 4 (1974) 289-296. 4 Ewalt, J., Randall, G. and Morris, H., The phantom limb, Psychosom. Med., 9 (1947) 118-123. 5 Fenstein, B., Lute, J. and Langton, J., The influence of phantom limbs. In: P. Klopsteg and P. Wilson (Eds.), Human Limbs and their Substitutes, McGraw-Hill, New York, 1954. 6 Henderson, W. and Smyth, G., Phantom limbs, J. Neurol. Psychiat., 11 (1948) 88-112. 7 Jellineck, E., Clinical tests of comparative effectiveness of analgesic drugs, Biomed. Bull., 2 (1946) 87-91. 8 Lasagna, L., Mosteller, F., Von Flesinger, J. and Beecher, H., A study of the placebo response, Amer. J. Med., 16 (1954) 170-779. 9 Melzack, R. and Loeser, J., Phantom body pain in paraplegics: evidence for a central ‘pattern generating mechanism’ for pain, Pain, 4 (1978) 195-210. 10 Riddoch, G., Phantom limbs and body shape, Brain, 64 (1941) 197-222. 11 Sherman, R., Case reports of treatment of phantom limb pain with a combination of electromyographic biofeedback and verbal relaxation techniques, Biofeedback Self-Regul., 1 (1976) 353. 12 Sherman, R., Published treatments of phantom limb pain, Amer. J. phys. Med., 59 (1980) 232-244. 13 Sherman, R. and Sherman, C., Prevalence and characteristics of chronic phantom limb pain among American veterans: results of a trial survey, Amer. J. phys. Med., 62 (1983) 227-238. 14 Sherman, R. and Tippens, J., Suggested guidelines for treatment of phantom limb pain, Orthopedics, 5 (1982) 1595-1600. 15 Sherman, R., Gall, N. and Gormly, J., Treatment of phantom limb pain with muscular relaxation training to disrupt the pin-an~ety-tension cycle, Pain, 6 (1979) 47-55. 16 Sherman, R., Sherman, C. and Gall, N., A survey of current phantom limb pain treatment in the United States, Pain, 8 (1980) 85-99. 17 Weiss, A., The phantom limb, Ann. intern. Med., 44 (1956) 668-677.
Pain, 18 (1984) 83-95 Elsevier
PAI 00572
Chronic Phantom and Stump Pain among American Veterans: Results of a Survey Richard
A. Sherman
*, Crystal
J. Sherman
** and Laura
Parker
***
* Psychophysiology Service, Department of Clinical Investigation, Dwight David Eisenhower Army Medical Center, Fort Gordon, Go. 30905, ** Medical Research Service, Veterans Administration Medical Center, Augusta, Go. 309I0, and *** Department of Clinical Investigation, Dwight David Eisenhower Army Medical Center, Fort Gordon, Ga. 30905 (U.S.A.) (Received
1 February
1983, accepted
13 June 1983)
Summary Questions concerning stump, phantom and other pain problems as well as demographic data were mailed to 5000 Americans whose amputations were connected with military service. Fifty-five percent responded and of these, 78% reported phantom pain. No predisposing factors, other than presence of stump pain, correlated with the presence or severity of phantom pain. Of those receiving treatment, only 1% reported lasting benefits from any of a multitude of treatments attempted.
Introduction We recently reported the results of a trial survey in which 1200 American veteran amputees were mailed a questionnaire regarding chronic phantom and stump pain problems [13]. The results indicated that at least 85% of the respondents had persistent phantom pain sufficiently severe to require withdrawal from social and work environments for considerable periods of time each year. Phantom pain did not tend to decrease significantly over time after amputation. These findings are in sharp contrast with the literature which generally reports that although between 25
The opinions or assertions contained herein are the private views of the authors and are not to be construed as official or as reflecting the views of the United States Department of Army or the Department of Defense. Correspondence and reprint requests to: Captain Richard A. Sherman, Ph.D., MSC, Department of Clinical Investigation, Dwight David Eisenhower Army Medical Center, Fort Gordon, Ga. 30905, U.S.A.
0304-3959/84/%03.00
@ 1984 Elsevier Science Publishers
B.V.
84
and 98% of amputees have occasional discomfort in their phantoms [2,5,10,17], only 0.5-58 have severe or debilitating phantom pain [4,6,9,17]. Respondents reporting phantom pain were similar to those without it in: (a) years since amputation; (b) use of and attitude toward medical facilities and medicine for non-amputation related problems; (c) reason for amputation; (d) current age or age at amputation; (e) location of amputation; (f) pain before amputation; or (g) other factors frequently correlated with occurrence and persistence of phantom pain. The sole exception was a minor correlation with the presence of stump pain. Respondents also reported that most treatments for phantom pain were useless except those designed to correct problems such as back pain which referred pain into the phantom. This conclusion supported our earlier findings in an analysis of the literature [12] and in a respondent survey of physicians active in treating amputees [16]. Nothing in the above work or in our clinical treatments of this disorder [11,14,15] led us to expect the magnitude of disability seen in the trial survey. The group surveyed in that study was partially self selected in that they were all members of a veterans’ amputee organization. It was possible that the people joining such an organization had an unduly large proportion of problems related to their amputations relative to the population of veteran amputees as a whole. Therefore, we thought that a larger survey of the same population was warranted to insure that our relatively small group was not an abnormal sample of the population.
Methods (A) Population surveyed The U.S. Veterans Ad~nistration was kind enough to supply a list of all 25,000 known military related amputees. We randomly selected 5000 to receive questionnaires similar to those sent to the previous trial group; but individuals who had been in the trial group were excluded' from the present selection pool. The randomized design was chosen to avoid a skewed sample in which amputees having pain might be over-represented, as may have occurred in the trial group. Any selection bias should have worked to exclude individuals with pain if the trial group was, in fact, biased. We did not identify any women’s names in the list supplied. (B) The questionnaire The survey instrument is shown in Fig. 1. Each survey was sent with a stamped return address envelope and a personally addressed cover letter which cfearly requested that all recipients respond regardless of the presence or the absence of amputation related problems. The 2 page instrument was composed of questions requiring only yes/no, rating scale, or single phrase answers. It requested information on (a) demographic characteristics; (b) the respondent’s medical and amputation history; (c) use of a prosthesis; (d) use of medicine and/or use of medical practitioners for any pain not related to the amputation; (e) relationships with amputees prior to amputation; (f) pain in the amputated limb prior to amputation; (g) stump pain characteristics,
85
frequency, intensity, and duration; (h) phantom sensations; and (i) phantom pain description, location, intensity, frequency, duration, treatment, physician responses, and current needs for treatment. (C) Data analysis When normally distributed numeric data were compared, the group means, plus AMPUTEE TO
RATE PAIN
QUESTIONNAIRE
When asked obout how much pain you feel (how much you hurt), please rate the amount of pain on a scale which starts at 0 (no pain) and continues up to 10 (so much pain you would commit suicide if you hod to bear it for one more minute). The higher the number, the greater the pain. 1. Your oge: 2. Your sex:
M Cl
FU
3. Numb& of years since your amputation:
yeorr
4. About your amputation: a. Reoson for the amputation: 1) During Combat: 2) As o Result of Combat Injury: 3) Non-Combat Accident: ., -.* .. .. < 4) umer ispecltyj; b. Which limb(s) was removed: right ormnleft armm right legmleft c. Do you still hove the knee or elbow of the amputated limb?.
iegn
.......
5. Did
you hove pain in the port of the limb which was removed BEFORE the amputation? , . . . . . . . . . . . . . . . . . . . . . . . . . . . . . If yes: for how many years before the amputation?. . . . . . , , . . . _ . .
6. Did you know ony amputees before your omputotion? . If yes: who were they (for example: friend, uncle, etc.)? 7. Do you use your artificial limb regularly? Ifyes:howmanyhaurrperdoydoyouuseit?.
...........
..... ............. . . . . . . . . . . , . . , . . .
‘.......l........*........ (see explanation at top of page), how have to hove before you take medicine for the . . . . ..*.................... u wait after beginning to hurt before taking
9. When you get o heodaehe: a. On the scale of O-10, how much pain do you have before you take medicine? . . . . . . . . . . . . . . . . . b. How long do you wait before toking me&%?’ *. ’ . ’ . ’ *’ ’ ’ ’ ’ *. (in hours) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10. If you began getting a pain in your shoulder every time you moved your orm and the pain did not go owoy after taking medicine of the type kept at home (such as aspirin) or using o heating pad: o. On the O-10 scale, how much would you have to hurt before going to the doctor? . . . . . . . . . . , . . . . . . . . . . . . . _ . . . . . . . . b. How long would you wait before going to the doctor? . . . . . . . ..*..........**............*.......
PLEASE CONTINUE
ON NEXT PAGE
.
86
SURVEl
YES NO
- Pacfe 2 :,.................
GFP
PM
i
PHANTOM SENSATION NOT STUMI 1 PAIN
(a) What
If yes:
part
(b) What
or ports
of the phantom
do they feel
like
(for
do they seem
instance:
worm,
ever make you a little (c) Do the feelings NOT quite hurt)?
to come
squeezing,
uncomfortable
etc)?
(almost,
but
.
(d) We would like to know how strong the non-pai If these feelings were painful, how strong wou
....
on the O-10 scale?.
-___
PHANTOM ‘AIM OWL\
13.
Did
YOU ever
after If ye!
four
i:
hove ow
ooin
omputotion
(a) A few
at all in the Dart
iphontom
months
after
of the limb
pain-iOT
stump
the amputation,
th
.
pain)?
did the phantom
pain:
1) Goowoy?............................. 2) Decrease greatly? 3) Not (b)
How
. . .. .. ..... ....... . . ...
changed?.
often
do you hove
(c) When
the pains
(d) What
port
(e) What
do
phantom
come, how
(Seconds,
hours,
or ports
long
poln?#dayslmonth: #hours/day:.
days,
months,
of the phantom
etc)
do they seem to come from?
they feel like?
(r) On the O-10 scale, what is the worst
it ever hurt(s)?
(g)
On the O-10 scale,
what
is the least
it hurt(s)?
(h) On the O-10 scale,
what
is the usual
amount
(i)
Did the pain ever get bad enough If yes: what happened? list all treatments pain)
for
phantom
NAME/TYPE:
SUCCESS:
NAME/TYPE:
SUCCESS: SUCCESS:
(CONTINUE ON BACK IF NECESSARY) Do you ever take medicine for the phantom If yes:
1) What
(include
2) How
alcohol,
aspirin,
poin?
etc.)?
of each? the pain
hove to be before
... . ..
PLEASE Fig. 1.
YOU
VERY
comment
(not
often?
3) Success
(I) On the scale of O-10, how much will want treatment?.
THANK
pain
they worked:
NAME/TYPE:
04
.
to ask for treatment?
you received
and soy how well
.
. .
it hurt(s)?.
Did you ever talk to a doctor about the pain? If yes: whot did he tell you and what did he do?
Please
. . .
.....
(i)
stump
..
do they lost?
MUCH
FOR
on what
ANSWERING
causes
you
. .. . . . THIS
SURVEY.
& changes
your
pain.
87
and minus their standard deviations, are presented. Student’s ‘t’ tests were used when two groups with similar variations were compared. For statistical comparison of non-numeric data and frequency of occurrence data, the chi square (x2) value is presented followed by the number of degrees of freedom (u”) and the probability (P) that the sample groups compared actually represent different populations. We did not consider differences significant unless there was less than one possibility in one hundred of chance alone producing that amount of difference (0.01). However, statistical significance was used only as a guide toward evaluating clinical significance.
Results The results of this survey parallel those of our previous trial study [13]. Both sets of results are presented when appropriate and the results presented here are organized in a similar way to those presented in the trial to facilitate comparison. (A) Response rate Of the 5000 letters sent out, 140 were returned as not deliverable or appropriate. Fifty-five percent (2694) of the surveys were returned in a useful condition compared with 61% of the previous trial group. (B) Occurrence and characteristics of phantom limb pain Seventy-eight percent of the respondents unambiguously indicated the presence of phantom limb pain, An additional 7% indicated that they had phantom pain, but at least some part of their description of feelings or location led us to believe that a minimal possibility existed of their having confused phantom with stump pain despite efforts in the questionnaire design to avoid such confusion. Thus, between 78 and 85% of respondents experienced phantom pain. The conservative estimate for the trial survey was 85%. In the unlikely case that all non-responding veterans were phantom pain free, then at least 46% of the total sample had significant phantom pain. The comparable ‘worst case’ figure for the trial survey was 51%. Both rates are far above the expected rate of 5%. Of respondents reporting phantom pain, about half indicated that it decreased at least slightly with time; whereas, the other half reported either no change or an increase. One quarter of those who reported no phantom pain indicated that they initially had some, but that it had disappeared over time. Among those with current significant phantom pain, 27% felt it over 20 days per month; 10% for 11-20 days; 14% for 6-10 days; 35% for 2-5 days; and 14% for only 1 day per month. When the number of hours per day of phantom pain was questioned, 27% reported greater than 15 h; 7% reported 11-15 h; 14% 6-10; 32% 2-5; and 20% reported 1 h or less. Our trial survey had indicated that individual episodes of phantom pain ranged from virtually continuous pain (not actually episodic in nature) to episodes of only several seconds duration. These short episodes occurred at frequencies ranging from one per day to many per minute. In the present survey
INTENSITY
125
-
M
110
--
B E R
95
.-
0 F
00
--
65
.-
50
--
35
--
20
.-
N
u
K E S P 0 N D E N T S
5
VS.
DURATION
OF
PHANTOM
PAIN
T
0
USUAL INTENSITI OF PAIN I ”
a Y
t
h s
USLIALDURATION OF EPISODES
Fig. 2. Intensity vs. duration of phantom pain.
the usual length of episodes was rated as seconds by 38%, hours by 37%, days by ll%, months by 2% and continuous by 12% of respondents (Fig. 2). Respondents were asked to rate the intensity of their pains on a scale of 0 through 10 in which 0 equalled no pain and 10 equalled so much pain that they would commit suicide if they had to bear it for one more second. On this scale, the average intensity of phantom pain was rated as 5.3 (+ 4.9), the worst was 7.7 (_+ 4.6), and the least was 2.9 (L- 5.1). Some respondents rated their least pain ‘10’ (suicide level). Most of those were people who had brief episodes which were always quite severe but did not last long enough to cause them to commit suicide. The comparative distributions of usual intensity of the phantom pains and painless phantom sensations were very similar. Respondents were asked to rate the intensity of painless sensations on the O-10 scale as if they were painful. Those people who experienced both phantom pain and painless sensations were usually those with episodic phantom pain. They reported that their painless phantom sensations had an average intensity of 5.6 ( f 3.9). Those respondents who never reported any phantom pain gave their painless phantom sensations an average intensity of 5.7 ( f 3.5). The similarities in intensity, description and distribution between painful and painless
89
phantom sensations tend to confirm the impression formed as a result of our earlier work that continuous phantom pain may be an intensified version of painless sensations while episodic pain has other origins. The descriptions and locations of both phantom pain and painless phantom feelings are depicted in Table I, and the relative intensities of these sensations in Table II. Factors reported as either intensifying or inducing episodes of phantom pain included changes in various aspects of the weather (48%), chronic problems with the prosthesis (S%), mental stress (6%), fatigue (4%), intestinal and back problems (2%), and acute stump problems (1%). Twenty-six percent had no idea what caused the pain or changed its intensity. People with continuous pain tended to be in the group unable to identify causes. Respondents frequently commented that particular factors
TABLE
I
LOCATIONS each category)
AND
DESCRIPTIONS
OF PHANTOM
SENSATIONS
(percent
Painful phantom sensations only
Painless phantom
Painful sensations reported by respondents who did not report feeling any painless phantom sensations (Ig)
Painless sensations reported by respondents also reporting painful phantom sensations
29 41 12
33 39 13
42 35 10
Lower leg/arm Knee/elbow Near but not
9 5
8 5
8 4
at stump
4
2
1
8 10 32
Painless sensations reported by respondents nor reporting any phantom pain (Sg)
(W)
Reported descriptions Warm Hot
3 15
9 11
Squeeze
16
27
4 1
3 1
14
19
5 1 28
32 15
19 11
10 6
Unusual position Broken Tingle Sharp shock or shooting Cramp
reporting
sensations
Reported locations Toes/fingers Foot/hand Ankle/wrist
of subjects
TABLE
II
INTENSITY
OF PHANTOM
SENSATIONS
(percentage
reporting
each intensity)
Scale: 0 through 10 where 0 equals no pain and 10 is so much pain that the respondent suicide if it had to be borne for one more second. Intensity rating
Intensity
of phantom
Worst (SB)
limb pain
Usual intensity
of painless
would commit
sensations
Usual (Z)
Least (%)
Painless sensasations among respondents also reporting phantom pain(X)
Painless sensasations among respondents no1 reporting any phantom pain(W)
0 1 2 3
0 1.4 3.0 3.3
1.4 6.2 10.9 12.7
9.1 26.6 25.2 12.1
0.4 4.7 11.1 12.0
1.3 12.9 22.1 6.7
4 5 6 7
4.9 8.9 6.5 7.8
10.5 19.1 9.9 7.3
7.4 8.3 2.0 1.8
9.5 14.7 8.3 6.4
9.2 17.9 3.8 2.9
8 9 10
18.2 13.2 32.4
10.5 2.9 8.4
2.7 0.8 2.9
11.8 5.9 14.9
7.9 2.1 11.7
Means (SD.)
7.7
5.3
2.9
5.6
5.7
(4.6)
(4.9)
(5.1)
(3.9)
(3.5)
(especially various aspects of the weather) did not relate to changes in phantom pain. Thus, phantom pain is clearly referred from many different sources within the body. (C) Correlations between possible predisposing factors and reports of phantom pain In both this study and our previous one, there were no significant differences between those reporting and those not reporting phantom pain related to the original cause of the amputation (x2 = 4.36 with 4 df, P = 0.359). Forty-two and 46% (respectively) of the amputations were due to direct combat injuries; 33 and 39% were due to combat associated problems; 18 and 19% were due to accidents not related to combat; 7 and 6% were due to disease. There were also no differences for the presence or absence of pain before amputation or years of pain prior to amputation. Pre-amputation familiarity with amputees was not a predictive factor (x2 = 6.98 with 4 df, P = 0.14). There were no significant differences between the pain and non-pain groups related to age at amputation (x2 = 59.58 with 58 df, P = 0.42). The mean age at amputation of our previous group was 24.9 (+ 5.6) and 25.7 (k 9.1) years for our present group; both of which are very different from the age at amputation for most other amputees. As far as could be determined, the particular armed conflict that respondents had participated in did not correlate with the presence or the severity of phantom pain.
91
(0) Post-amputation predictors of persistence of phantom pain The average number of years since amputation was 26 (k 12.57) for amputees reporting phantom pain and 30 (* 12.01) for those not reporting it (F= 1.10, P = 0.245). Many respondents’ amputations had occurred only a year or so prior to receipt of the survey. Of those respondents who experienced phantom pain, 14% reported that their phantom pain had gone away and 42% reported that it had gradually decreased over time. The remainder (44%) reported no change. Thus, phantom pain cannot be assumed to decrease gradually to a non-problematic point. Age when surveyed was also not a major contributing factor in reporting phantom pain. Those reporting phantom pain were an average of 51.6 ( f 12.9) years old and those not reporting it were an average of 56.2 (+ 12.7) years old. The mean age among respondents in our trial study was 51.4 (k13.4) compared with a mean of 52.7 (k 13.1) for this group. Those reporting and those not reporting phantom pain were similar in their use of prostheses (x2 = 12.64 with 8 df, P = 0.13). This lack of difference held for above and below the knee/elbow and upper versus lower extremity comparisons. The presence of stump pain correlated highly with reports of phantom pain in the previous study. This was also the case in the present study, as 66% of those reporting phantom pain also reported stump pain; whereas, only half of those not reporting phantom pain reported stump pain. This difference is statistically significant (x2 = 42.1 with 10 df, P = 0.001) and probably of actual clinical importance as well. Those reporting phantom pain also reported more frequent stump pain (x2 = 11.4 with 3 df, P = 0.009). We are not aware of any differences in monetary compensation dependent on report of phantom pain. The amputation alone is the usual basis for amount of compensation. (E) Sensitivity and reactivity to pain unrelated to the amputation If people reporting phantom pains are more sensitive or reactive to pain than those not reporting it, they might report as pain what the other group reports as painless sensations. We evaluated this possibility by requesting information on responses to common pains not related to the amputation. There was no difference in intensity of stomach ache requiring medication (x2 = 13.4 with 14 df, P = 0.49) or in hours waited before using medication for the stomach ache (x2 = 0.59 with 3 df, P = 0.99). The same lack of significant difference occurred for headache intensity requiring medication (x2 = 4.9 with 15 df, P = 0.11) and for the time interval prior to taking medication for it (x2 = 1.87 with 3 df, P = 0.60). Less well understood shoulder pain of longer duration was rated for pain intensity and for duration before going to a doctor and produced a similar lack of difference (x2 = 4.84 with 7 df, P = 0.68). These measures of pain reactivity and sensitivity do not predict report of phantom pain. (F) Treatment of phantom limb pain Fifty-four percent of those reporting phantom pain discussed it with their physicians but only 19% of respondents were offered treatment for their phantom pain. Our previous study had found respective percentages of 61 and 17 for the
92
above situations. Two percent were told nothing could be done, 5% were told it would go away (regardless of years since onset), 24% found their questions avoided, and the rest were told it was in their heads. Many respondents reported receiving the TABLE III EFFECTIVENESS OF TREATMENTS Type of treatment
Acupuncture Alcohol (drinking) Analgesics Anterior cingual lesion Antjcon~lsants Antidepressants Biofeedback Cordotomy Electrical slim. of stump Electroshock Explanation/reassurance Increased use of prost. Heat on stump end Hypnosis Injection (unspecified) Local anesthetics Massage of stump end Narcotics (unspecific) Nerve block (unspecified) Nerve strangulation Neurectomy Novacaine blocks Peripheral nerve stim. Phantom limb exercises Phenthiazine Physical therapy Pills (unspecified) Press end of stump Psychotherapy Quinine Raise stump Refit prosthesis Relaxation training Sedative hypnotics Stump desensitization Stump revision (surgical) Sympathetic block Sympathectomy Thalamic stimulation Ultrasound at stump
FOR PHANTOM
Success (number
of reports at each level of success)
No effect
Minor temporary change
0 28 195 0 3 2 0
3 86 421 1 4 0 1 0 7 3 0 5 54 1 10 8 31 10 3 2 1 6 1 0 0 11 24 2 0 3 1 0 3 56 3 II 1 3 1 7
1 6 2 1 0 26 2 7 6 10 6 5 2 4 9 2 2 1 12 9 1 10 1 0 0 0 13 2 13 1 2 0 2
PAIN AS REPORTED IN BOTH STUDIES
Minor permanent change
Large temporary change
0
1
0
3 52 0 0 0 0 0 2 0 0 2 5 1 1 9 2 5 0 2 0 0 0 0 0
116 Q 0 0 0 0 0 0 0
0 0 0
0 2 0 0 0 0 0 0 0 0
3 0 0 1 0
0 6 2 2 0 0 0 3
Large permanent change
Cure
0
0 0
2 0 0 0 0 I) 0 0 0 2 0 0 0
0 0
0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0
93
strong implication that they were ‘insane’ if they felt pain in a part no longer present. Many respondents also commented that they .avoided discussing their phantom pain with physicians out of fear of the above response or of terrible sounding invasive treatments with the reputation of total failure in the amputee community. Because they needed care for their stumps and for other conditions, respondents were frequently unwilling to risk their credibility and relationship with their physicians by discussing phantom pain. The mean intensity of phantom pain required before requesting treatment was 7.9 ( f 2.1) for this study and 7.4 ( f 2.5) for the previous trial. Although the usual intensity of phantom pain reported was 5.3 ( f 4.9), the worst was 7.7 (k 4.6) which indicates that most people were feeling sufficient pain to want treatment at least part of the time. The success rate for treatment was dismal. When treatments provided by the medical community are considered, only 1.1% of the respondents received lasting important benefits (0.7% large permanent change and 0.4% cure); 8.9% reported minor permanent improvements; 7.3% reported major temporary help from their treatments; 5.5% reported some very minor help; and 27.4% reported no change at all. Thus, at most 8.4% of the respondents treated could be said to have been helped to any real extent. The treatments prescribed and their success rates are summarized in Table III. As it is probable that most patients do not list non-prescription pain medications and home remedies when filling out forms about treatments, it is likely that all respondents reporting pain had tried mild analgesics, heat, rubbing the stump, and other simple home remedies without positive effects or they would have mentioned them. The data reported in Table III would be likely to err on the side of lack of report of ineffective treatments rather than on leaving out effective ones. Many newly popular treatments such as acupuncture are not yet widely available in U.S. military and Veterans hospitals, and so our respondents are not as likely to have tried these novel treatments as are civilian amputees.
The results of this study are of interest at two very different levels. First, the combined results of this and the previous study provide the only major survey available of amputees’ problems with phantom and stump pain. Given the size of our sample relative to the population of veteran amputees, our results make it abundantly clear that phantom pain severe enough to cause considerable discomfort and disruption of normal life is the usual condition. for amputees. Secondly, the medical community’s lack of awareness of the degree and pervasiveness of the problem highlights basic problems in patient communication. The complexity of the phantom pain problem is indicated by the many, usually mutually exclusive, factors which influence the pain and by its varied descriptions and locations. This complexity goes a long way toward explaining why any single treatment does not work in all cases of phantom pain. We have combined all of our clinical and research data on possible mechanisms underlying referral of pain into the phantom with evidence from our amputee surveys in an article which recom-
94
mends those treatments most likely to produce lasting benefit for various types of phantom pain [14]. These data should provide a suitable starting place for researchers interested in investigating the basic mechanisms of referred pain. Our survey of physicians treating phantom pain [16] showed that most of them thought that their treatments were effective when in fact they were absolutely useless. The literature contains hundreds of articles purporting to give effective treatments for this disorder [12]. Both the physician-respondents and the treatment articles showed that there were few adequate post-initial treatment follow-ups. If the patient did not return to the same doctor, that practitioner could have been left with the idea that his treatment had worked. A 6 months’ or yearly follow-up is necessary. However, it may be nearly impossible to carry this out in the usual medical specialist practice in major United States medical centers. When the published facts are wrong, ineffective treatments can become popularized and perpetuated indefinitely. The literature is rife with articles in which complex, difficult pain problems are apparently treated with great success in small groups of patients. These articles almost always lack adequate follow-ups. The large literature on placebo treatment of pain having a clear physical basis shows that about one-third of patients report that it is effective and that the effects can last for several months [1,2,7,8]. The placebo treatments tend to be most effective with patients having compliant personalities. Most of our respondents did not discuss their phantom pain with their physicians for fear of being thought insane. Many who were treated did not tell their physicians that the treatment did not work for fear of what would be tried next. All wanted to avoid compromising the vital (survival level) care of their stumps. These results lead us to question whether some of the compliant patients from the placebo studies simply do not tell the practitioners that the experimental pain medication has been less effective than hoped in order to avoid compromising the rest of their treatment. This possibility emphasizes not only the need for good follow-up, but that the follow-up should be by non-involved parties when possible. The solution to perpetuation of poorly proven treatments is complex, but a useful first step should be the refusal by all medical journals to publish articles purporting to demonstrate the effectiveness of treatment techniques for chronic pain problems which do not include adequate follow-up data.
Acknowledgements We gratefully acknowledge the help of the Controller’s Office at the Veterans Administration Central Office who provided the names and addresses of those amputees who were kind enough to respond to our survey, the dedication of the people who sent out and then scored the surveys, especially Specialist Sutton and the Manning family, and the assistance of Major Bruce Arensman, Doctor of Veterinary Medicine, who provided computer support during the data analysis. This study was entirely supported by the Department of Clinical Investigation at Dwight David Eisenhower Army Medical Center.
95
References 1 Beecher, H., Quantification of the subjective pain experience. In: M. Weisenberg (Ed.), Pain: Clinical and Experimental Perspectives, Mosby, St. Louis, MO., 197.5, pp. 56-66. 2 Carlen, P., Wall, P., Nadvorna, H. and Steinbach, T.. Phantom limbs and related phenomena, Neurology (Minneap.), 28 (1978) 211-217. 3 Evans, F., The placebo response in pain reduction, Adv. Neurol., 4 (1974) 289-296. 4 Ewalt, J., Randall, G. and Morris, H., The phantom limb, Psychosom. Med., 9 (1947) 118-123. 5 Fenstein, B., Lute, J. and Langton, J., The influence of phantom limbs. In: P. Klopsteg and P. Wilson (Eds.), Human Limbs and their Substitutes, McGraw-Hill, New York, 1954. 6 Henderson, W. and Smyth, G., Phantom limbs, J. Neurol. Psychiat., 11 (1948) 88-112. 7 Jellineck, E., Clinical tests of comparative effectiveness of analgesic drugs, Biomed. Bull., 2 (1946) 87-91. 8 Lasagna, L., Mosteller, F., Von Flesinger, J. and Beecher, H., A study of the placebo response, Amer. J. Med., 16 (1954) 170-779. 9 Melzack, R. and Loeser, J., Phantom body pain in paraplegics: evidence for a central ‘pattern generating mechanism’ for pain, Pain, 4 (1978) 195-210. 10 Riddoch, G., Phantom limbs and body shape, Brain, 64 (1941) 197-222. 11 Sherman, R., Case reports of treatment of phantom limb pain with a combination of electromyographic biofeedback and verbal relaxation techniques, Biofeedback Self-Regul., 1 (1976) 353. 12 Sherman, R., Published treatments of phantom limb pain, Amer. J. phys. Med., 59 (1980) 232-244. 13 Sherman, R. and Sherman, C., Prevalence and characteristics of chronic phantom limb pain among American veterans: results of a trial survey, Amer. J. phys. Med., 62 (1983) 227-238. 14 Sherman, R. and Tippens, J., Suggested guidelines for treatment of phantom limb pain, Orthopedics, 5 (1982) 1595-1600. 15 Sherman, R., Gall, N. and Gormly, J., Treatment of phantom limb pain with muscular relaxation training to disrupt the pin-an~ety-tension cycle, Pain, 6 (1979) 47-55. 16 Sherman, R., Sherman, C. and Gall, N., A survey of current phantom limb pain treatment in the United States, Pain, 8 (1980) 85-99. 17 Weiss, A., The phantom limb, Ann. intern. Med., 44 (1956) 668-677.