- Email: [email protected]
The experience of chronic nonmalignant pain
ti’. 9 No. 5 July 1994
312 Journal of Pain and Symptom Management
tIhigint&l Mcle
The Experience of Chronic Nonmalignant Laura S. Hitchcock,
PhD, Betty R Ferrell, PhD, and Margo McCaffery,
RN
National Chronic Pain OutreachAssociation(L.S.H.), Bethesda, Maryland; CityofHope National Medical Center {B. R.F.), Duarte, Calijbrnia; and Consultant and Lecturer (M. M.), Los Angels, Ca@rnia
This article reports the results of a survty of 204 persons with chronic nonmalignant pain who were members of a national self-help organization. The survey evaluated the organization, explored the perceived effHt of pain on quality of life, and assessed experiences with and perceptions of health-careprovtders. Response rate was 40%. Of survey respondents, 50% reported inadequate pain relief: Respondents identified d@ression as one of the worstprobIem.s caused by their chronic pain: 50% reported that they had considered suicide due tofeelings of hopehssness associated with their-pain, 51% reported taking only as much medication as prescribed, and 44 % reported taking less medication than pmscribed. Further investigation is needed to &cribe the personal im@ct of chronic nonmalignant pain. J Pain Symptom Manage 1994;9:312-318. Key Wmd Chronic nonmalignant pain, addiction, analgesics, quality of life, self-help organization, s&i&
Ahbough chronic nonmalignant pain is acknowledged as one of tbe most pervasive and expensive health-care problems today, little research has been devoted to identifying the characteristics, perspectives, and attitudes of affected patients, including the impact of pain on quality of life. The Nuprin Pain Report, a nationwide survey conducted in 1985 on a random sample of adult Americans, revealed that 20.8 million people experienced pain for 101 days or more during the previous year.’ Address ybrint requests to: Laura S. Hitchcock, PhD, The National Chronic Pain Outreach Association, 7979 Old Georgetown Road, Suite 100, Bethesda, DID 208142429, USA. Acceptedfmpublication:December 23, 1993. 0 U.S. Cancer Pain Relief Committee, 1994 Published by Elsetier, New York, New York
This finding, however, probably underestimates the prevalence of the problem because it excluded those who experience severe pain that is intermittent or episodic in nature, such as migraine headaches or sickle-cell crisis. The Nuprin Report found that pain was reported as severe or unbearable in over one-third of respondents with joint or back pain. Such pain can have highly destructive effects; indeed, recent animal research suggests that unrelieved pain can even adversely affect physio!ogic functioning, including immune system processes.23 Because chronic cancer pain seems to have a major influence on all aspects of quality of life (QOL), it might be surmised that any type of pain, regardless of its cause, might have significantly negative effects on QOL. In contrast to
ofm-3924/94/$7.00
vol. 9 No. 5Jdy 1994
The Experience oJChronic Nonmalignant Puirz
patients with chronic cancer pain, however, patients with chronic nonmalignant pain are a far more diverse group.4 Some patients have pain related to musculoskeletal injury or soft tissue pathology, such as degenerative joint pain, muscle tears, or myofascial pain; others have pain related to neurologic changes, such as diabetic peripheral neuropathy, trigeminal neuralgia, or postherpetic neuralgia. Some patients report pain that has lasted for as little as 6 months, while others report pain of more than 10 years duration. For some patients, pain is present almost all the time, while others experience pain intermittently. Common treatment approaches for chronic nonmalignant pain range from nondrug methods such as physical therapy, exercise, stress management training, and biofeedback, to the combined use of these methods with medications such as nonopioids, opioids, and adjuvant analgesics. Other therapies are more invasive, such as trigger-point injections, nerve blocks, and surgery. Quality of life is a multidimensional concept that involves several domains, including physical well-being, psychological b&-being, spiritual well-being, and social well-being.” In cancer patients, QOL is affected by the disease itself, the symptoms associated with the disease, and by the various modalities used to treat the cancer.” The meaning of QOL differs from one individual to another, and QOL measurement provides a means to compare the distress associated with various conditions by different patients. Chronic nonmalignant pain also may dramatically affect QOL. For example, the potentially negative effects of pain on the ability to perform physical activities are repeatedly mentioned in the literature.7~s In fact, the success of a pain clinic’s program is often measured by the degree of improvement in physical activities, especially work-related activities.” In a recent study, researchers randomly surveyed individuals listed in a Kentucky phone book and asked whether respondents were currently in pain of any type or had experienced pain of any type in the past. This survey found that all respondents who reported being in pain at the time of the sux~y experienced limitation of their activities, and that even those who had recovered from acute or chronic pain reported continuing limitation of their activi-
to
313
ties. Among respondents experiencing pain at the time of the survey, comparisons of the amount of psychological, physical, and economic stress related to pain revealed that physical stress was the most pronounced. These stresses increased with length of time in pain. In a study of nursing home residents with pain, 53% of subjects stated that pain impaired ambulation, 45% reported sleep disturbances related to pain, and 49% reported that pain impaired posture. ’ t Other effects of pain included constipation, impaired appetite, incontinence, and impaired dressing or grooming ability. Recently, Swedish researchers used a S-day diary to collect detailed information about the daily lives of 58 subjects with fibromyalgia. Although 55% were employed, they were working shorter hours and needed to change to less strenuous tasks at their jobs. Tasks such as carrying, holding, and running were rated as difftcult to perform. Two-thirds of subjects reported no pain-free periods or very short pain-free periods during the study.‘” Studies of patients with chronic nonmalignant pain have also revealed that psychological well-being may be significantly affected by pain, again similar to patients with cancer pain. A critical review of the literature affirmed that the prevalence of depression is substantially higher in these patients than those without pain.‘a Early detection of suicidal ideation in patients admitted to pain clinics is now advocated.‘” In a study of nursing home residents with chronic pain, subjects reported that pain caused depression (32%), anxiety (26%), and impaired memory (12%).” The latter study of nursing home residents also reported that 54% of subjects had pain that impaired their ability to enjoy social activities, such as group meals, visiting with friends and relatives, and recreational activities.’ i Researchers are also now beginning to study the negative effects of chronic pain on marital relationships. For example, in a study of 51 persons with pain, serious difftculties were found in almost all aspects of couple functioning; depression was a significant factor in this marital dysfunction.tg This paper reports the results of a Survey of 204 individuals with chronic nonmalignant pain who were members of a national selflhelp organization. The purposes of the study were
314
Vol. 9 No. 5July 1994
HitchcocRet al.
(a) to determine whether the organization was perceived by its members as meeting their needs, (b) to explore how respondents perceived the effect of pain on their QOL, and (c) with and to explore members’ experiences perceptions of health-care providers.
Methods Population and Sample Subjects were members of the National Chronic Pain Outreach Association (NCPOA), all of whom experienced chronic nonmalignant pain (N = 500). NCPOA members learn about the organization through word of mouth, family and friends, reports in the media, and referral from other organizations, self-help directories, and health-care professionals with whom they come into contact. Members typically contact NCPOA for information and may subsequently join the organization. Thus, this is a self-selected group of pain patients who are actively interested in better managing their pain. Pr.2).ious demographic data collected from members in 1988 indicates that the majority of NCPOA members are female and that their average annual household incomes and levels of education are above national averages. NCPOA currently has members in all 50 states, as well as in Canada and other foreign countries.
SwweyQuestionnaire A 5-page questionnaire developed by the authors for this study was used to gather information. The questionnaire contained 46 questions. At the end of the questionnaire, respondents were invited to make additional comments.
Results Demographics A total of 204 persons (40% response rate) returned the questionnaire. This selected group ranged in age from 19 to 90 years old, with an average age of 47 years; 75% held graduate degrees. Overall, 91% had at least some college education. The average annual household income was approximately $43,000, with 47% reporting an annual income of $40,000 or more. Respondents lived in 37 states, with the greatest number living in the states of California, Maryland, New York, and Virginia. Respondents had experienced pain for an average of 9.5 years, with a range of 6 months to 74 years. The average length of NCPOA membership was slightly over 2 years. Approximately one-half of the subjects had participated in a chronic pain support group at some point, but slightly less than one-third reported current involvement with a pain support group.
Pain Intensity The average subject experienced pain 80% of the time (Table 1). Pain intensity was measured using a 5point scale with 0 equal to no pain and 5 equal to the worst pain possible. Usual pain intensity for the month prior to the survey was reported as 4 or 5 by 30% of the subjects; 3 by 50% of the respondents; and 2,1, or 0 by 25% of the respondents. Using the same bpoint scale, subjects were asked to rate the intensity of the worst pain experienced in the month prior to the survey. The average response was 4.4. Subjects reported experiencing “the worst pain possible” 31% of the time. Table 1 Reportsof PainIntensity Question
Procedure The survey questionnaire was mailed to all NCPOA members. A letter accompanying the questionnaire explained the reasons for the smvey. A stamped addressed envelope was included for respondent convenience. Due to limited financial and personnel resources of NCPOA, a non-profit organization, no followup of nonresponders was conducted.
hfxe
Mean Median
What is the Ural intensity” of your pain?
O-5
3.2
2.8
What is the wmt intensity” of your pain? What percentof the time do you have pain? What percent of the time do you have the worst pain?
3-5
4.4
4.0
5-100%
80%
90%
17-100%
31%
20%
“Scalu: 0 = uo pail] to 5 = the worst possible pain.
The Expedienceof Chronic Nonmalignant Pain
Vol. 9 No. 5 Jdy 1994
Table 2
-es
of Pain Reported to be MostBothersome Percent of subjects reporting
Type of pain Back Neck Myofascial/fibromyalgia Hips, buttocks, legs, and feet Headaches Arthritis Shoulders, arms, and hands Thoracic outlet syndrome Neuropathic pain Chest or abdomen
47 20 17 17 8 6 5 5 5 5
NOWOne-third ~fsubjccs rcprtcd morr than one “twst bothcrsomc” pain problem.
Trpes of Pain Problems Table 2 identifies the types of pain listed by subjects as being the “most bothersome.” The majority of subjects reported multiple pain problems with the average subject identifying five pain problems. One-third of the subjects listed more than one “most bothersome” pain prob lem despite the instruction to choose only one. Of the subjects, 47% reported back pain as the most bothersome type of pain. Other types of pain included neck pain (20%); myofascial pain or fibromyalgia (17%); pain in the hips, buttocks, legs, or feet (17%); headaches (8%); arthritis (6%); shoulder, arm, or hand pain (5%); thoracic outlet syndrome (5%): neuropathic pain (5%); and chest or abdominal pain (5%).
Medication Use Table 3 identifies the pain medications taken by survey respondents. Nonprescription medications accounted for 25% of those reTable 3 Medications Prescribed for Pain Medications that were prescribed for the pain
Percent of subjects reporting use
“Mild” opioids (e.g., propoxypbene with codeine) N!WDs “Strong” opioids (e.g., morphine) Aspirin and acetaminophen Antidepressants Muscle relaxants Tranquilizetx/sleeping pills prescribed for pain relief NWJk.. nollswroidal antiinflamrra~o~drugs.
28 22 15 11 I1 8 4
315
corded; prescription medications accounted for 75%. The most frequentiy identified medications were “mild” opioid analgesics (28k), such as propoxyphene or acetaminophen with codeine. The next most frequently reported category of medication was nonsteroidal antiinflammatory drugs (NSAIDs) (22%). “Strong” opioids were the next most frequently prescribed category (15%)) which was followed by aspirin and acetaminophen products (110/o), antidepressant medications (1 l%), muscle relaxants (8%), and tranquilizers or sleeping pills prescribed for pain control (4%). The most common medication side effect was constipation (35%). Other reported side effects included drowsiness (25%), nausea and vomiting (15%)) confusion ( 1 I%), and bleeding (4%). Respondents were also asked about the amount of medication they were taking in relation to the amount prescribed by their physicians: 51% reported taking only the amount of medication prescribed by their physicians, 41% reported taking less medication than prescribed, and 5% reported taking more than prescribed. When asked how effective their medications were in relieving their pain on a usual day, 50% reported inadequate pain relief. The majority of respor:dents (57%) who reported inadequate pain relief believed that they would need a stronger medication for adequate pain relief rather than a higher dosage of the same medication. Other substances used to relieve their pain (Table 4) included tranquilizers and sleeping pills (34%), alcoholic beverages (240/o), and medications prescribed for other reasons such as nausea or allergy problems (33%). The use of sleeping pills and tranquilizers that were not prescribed for pain (34%) was much higher Tdie 4 Medications ‘&ken for Pain But Not Prescribed for Pain Medications not prescribed but used for pain Alcohol Medicines prescribed for other reasons (antiemetics, allergy medications, etc.) Tranquilizers/sleeping pills prescribed for other reasons but used for pain
Percent of subjects 24 33 34
VOL 9 N/3. 5July I994
Hitchcock et al.
316
Table 5
What Are the Three Worst Problems That You Have Because of YO.C Chrotic Pain? Problem Not able fo work or do household chores Limitations on activities and hobbies Depression Fatigue Diff~cuity in fulfilling role as spouse Uncertainty about the future Lack of pain control Change in life-style/decrease in social contact Decreased mobility Unable to sleep
than the use of these dn;gs that were specifically for pain (4%). A total of 41% of respondents reported that their physicians had refused to prescribe enough pain medication to relieve their pain. Among the reasons reported by individuals in this group were the physician’s belief that patients should not take medications on a long-term basis; the belief that the patient’s report of pain was not severe enough to prescribe medication or that the patient should be able to “handle” even severe pain without using any medication; physician concerns about adverse side effects related to the medications; and physician fear ofjeopardizing one’s medical license by prescribing opioids.
Attitudes Related to Addiction Two survey questions addressed the subjects’ beliefs about addiction resulting from the use of opioid analgesics. The first was based on a common medically accepted definition of addiction and asked, “Narcotic addiction is defined as an overwhelming need to get and use prescribed pain pills for their psychological effects, not for medically approved reasons. Using this definition, how likely do you believe it is that ‘addiction will occur as a result of treating pain with narcotic medications?” Of the subjects, 57% indicated that less than 5% of patients experiencing chronic pain are likely to become addicted to opioid drugs, The second question asked, “How likely would it be that you would continue to take pain pills if you no longer had any pain?” Of the respondents, 99% stated that they would not be likely to continue taking pain pills if they were pain free.
Percent of subjects reporting the problem 36 28 23 15 14 11 10 9 8 8
The Impact of Chronic Pain on Quality of Life The questionnaire included a number of questions designed to evaluate the impact of chronic pain on QOL. The first question asked, “When you are around other people, how important is it for you to act normal and hide any behaviors (e.g., frowning, groaning) that would let people know you are in pain?” A 5point scale was used, ranging from 0 = not at all important to 5 = a great deal. Of the respondents, 66Y0 reported that it was important (scores of 4 or 5) to try to keep others from noticing their pain. When asked whether they believed that their pain affected their personal relationships, 71% stated that it did” 87% reported that pain interfered significantly (scores of 3 or greater on a 5-point scale) with normal activities, such as gardening, reading, or travel. Despite their responses, when asked, “How gcod is your quality of life?” 57% rated their QOL as 3 or greater on a 5-point scale (0 = poor quality of life to 5 = good quality of life). Another question asked subjects whether they felt that they were generally “in control of things, of your life?” A total of 55% reported that they generally felt in control of their lives. However, when asked, “Do you ever feel hopeless about your pain problems?” A majority (69%) reported that they do feel hopeless, and 50% of the subjects answered afIirmatively to the question, “Have you ever felt so hopeless about your pain that you have seriously considered suicide?” The last question concerning QOL asked, “What are the three worst problems you have because of your chronic pain?” In descending order, the most common problems were not
Vol. 9 No. 5 Juty 1994
The Expience
of Clonic Nonmaliptant Pain
being able to work at a job or do household chores; limitations on activities and hobbies; depression; fatigue; difficulty in fulfilling one’s role as a spouse; uncertainty about the future; lack of pain control; life-style changes and decreased socializing; decreased mobility; and difficulty sleeping (Table 5).
Use ef Health-Care Services Another section of the survey addressed the respondents’ experiences related to medical treatment for pain management. The average subject had sought treatment for their pain from ten different health-care providers and had visited a health-care provider on the average of ten times during the previous year. In descending order, respondents chose the foilowing types of primary-care practitioners to provide pain management: internists and general practitioners, psychiatrists, physical therapists, neurologists, rheumatologists, orthopedic surgeons, pain specialists, anesthesiologists, psychologists, and chiropractors. Neurologists and orthopedic surgeons were most frequently consulted ahout pain problems. Respondents were also provided with a list of 23 nondrug pain therapies and were asked to identify the methods they had used. In descending order, these methods were changing position, applying heat, mild exercise, massage, pressure or vibration, and listening to music. The methods identified as being the most helpful, in descending order, were applying heat, changing position, massage, pressure or vibration, cold or ice, meditation or prayer, watching W, talking with someone, laughing, Jacuui/hot tub, mild exercise, listening to relaxation tapes, and listening to music.
Value ofthe Self-helpOrganization The final section of the survey asked subjects to rate the importance and value of NCPOA’s services. Respondents rated the organization’s quarterly newsletter as the most important service provided. Ranked next in importance were NCPOA’s pamphlets and publications, while its cassette tapes were ranked third. When asked what new services they felt were most needed from NCPOA, respondents cited more specific information about chronic pain conditions and treatments more frequently. The second most frequent request was to publish the newsletter more often.
31i
A total of 68 respondents (33%) wrote comments on their surveys. These responses have been included in a booklet published by NCPOA.“’ The comments centered around five themes: (a) difficulty in finding medical help to diagnose and treat their pain, (b) ways in which chronic pain affected their lives, (c) a sense that other people did not believe that they were in pair. or understand what it means to experience chronic pain, (d) personal strategies for coping with chronic pain, and (e) services desired from NCPOA. Such comments provided considerable qualitative data about concerns and feelings related to living with chronic pain,
Because the respondents are a select subset of persons with chronic nonmalignant pain, the results and possible implications of this survey must be viewed with some caution. The individuals participating in this survey were members of a self-help organization and had taken time to respond to the questionnaire. This suggests that the subjects had assumed some degree of responsibility for managing their chronic pain. In addition, most subjects were well-educated, with average or better-than-average financial resources and intact marriages. The responses of the survey reveal that chronic pain has a highly negative impact on QOL even in this selected population. Although 57% of subjects rated overall QOL in the fair to good range, a closer look at responses to specific questions suggests that QOL was threatened by a number of factors. Perhaps the most alarming is the observation that, in spite of their substantial educational and financial resources, 50% of subjects had considered suicide. ‘This illustrates the enormous impact of chronic pain and adds to the growing evidence that chronic pain can be life-threatening. It supports the suggestion by Livengood and Parris I4 that early detection of suicidal ideation is important in this population of patients. Responses regarding medication usage for pain relief suggest that side effects, especially constipation and drowsiness, may not have been well managed. Overuse of analgesics was not apparent, although alcohol was used for pain relief by 24% of the subjects. Half of the respondents reported inadequate pain relief
Hitchcock et al.
318
medications, and 41% reported the perception &at physicians refuse to prescribe enough medication to achieve effective pain from
control. Subjects also reported considerable interest in obtaining more information about their conditions and treatment options. Health-care providers may find it useful to increase written and verbal information to patients regarding medication, their side effects, and the possible subjects also causes of their pain. Because indicated difticulty in finding medical help, increased patient teaching might be effectively coupled with increased attention to providing information about appropriate referrals for patients with chronic pain. This survey suggests the need for further investigations of the perceptions and practices of persons with chrouic pain, including the relationship between pain and QOL. The study findings provide descriptive data on a very Further research should select population. include more diverse populations with additional measures of pain and QOL.
Ackmwle~mts We gratefully acknowledge the assistance provided by the Purdue Frederick Company through a grant to facilitate the collection and tabulation of data. The assistance of Daniel A. Hitchcock, PhD, was invaluable in the technical preparation of this article, including the figures and tables. Most of all, we thank the members of NCPOA who gave generously of their time and knowledge by responding so thoroughly and quickly to the survey.
W
H. The Nuprin pain report. Louis Harris and Associates, 1985.
6. Ferrell BR, Wisdom C, Wenzl C. Quality of life as an outcome variable in the management of cancer pain. Cancer 1989;63:2321-2327. 7. Council JR, Abern DK, Follick MJ, Kline CL. Expectancies and functional impairment in chronic low back pain. Pain 1988;33:323-331. 8. Dolce JJ, Cracker MF, Moletteire C, Doleys DM. Exercise quotas, anticipatory concern and selfefficacy expectancies in chronic pain: a preliminary report. Pain 1986;24:365-372. 9. Kores RC, Murphy WD, Rosenthal TL, Elias DB, North WC. Predicting outcome of chronic pain treatment via a modified selfefficacy scale. Behav Res Ther 1990;28:165-169. 10. WilsonJF, Brockopp GW, Steger HG. Quality of life patterns in patients who have suffered chronic pain: results of a statewide survey. Presented at the American Pain Society, San Diego, CA, October 1992. 11. Ferrell BA, Ferrell BR, Osterweil D. Pain in the nursing home. J Am Geriatr Sot 1990;38:409-414. 12. Hem&son C, Gundmark I, Bengston A, Ek AC. Living with fibromyalgia: consequences for everyday life. Clin J Pain 1992;8:138-144. 13. Turner JA, Roman0 JM. Self-report screening measures for depression in chronic pain. J Clin Psych 1984;40:909-913. 14. Livengood JM, Parris WCV. Early detection measures and triage procedures for suicide ideation in chronic pain patients. Clin J Pain 1989;8:164-169. 15. Thomas M, Roy R. Pain patients and marital relations. Clin J Pain 1989;5:255-259. 16. Hitchcock L, ed. Living with chronic pain: personal experiences of pain sufferers. Bethesda, MD: National Chronic Pain Outreach Association, 1992. 17. Jensen MP, Turner JA, Roman0 JM, Karoly P. Coping with chronic pain: a critical review of the literature. Pain 1991;47:249-283.
18. Jensen MP, Karoly P. Pain-specific beliefs, perceived symptom severity, and adjustment to chronic pain. Clin J Pain 1992;8:123-130.
erences
1. Taylor
Kd. 9 No. S.Ju& 1994
New York:
2. Dubner R. Pain and hyperalgesia following tissue injury: new mechanisms and new treatments. Pain 1991;44:213-214. 3. Liebeskind JC. Pain can kill. Pain 1991;44:3-4. 4. BonicaJJ. General considerations of chronic pain. In: BonicaJU, ed. The management of pain. Philad& phia: Iza and Febiger, 1990:180-196. 5. Ferrell BR, Rhiner M, Cohen MZ, Grant M. Pain as a metaphor for illness. I. Impact of cancer pain on family caregivers. Oncol Nurs Forum 1991;18:1~03_ 1309.
19. Kremer EF, Block A, Gaylor MS. Behavioral approaches to treatment of chronic pain: the inaccuracy of patient self-report measures. Arch Phys Med Rehabil 1981;62:188-191. 20. Ready LB, Sarkis E, Turner JA. Self-reported versus actual use of medications in chronic pain patients. Pain 1982;12:285-294. 21. Cleeland CS. Barriers to the management cancer pain. Oncology 1987;l (suppl):19-26,
of
22. Foley K. Preface. J Pain Symptom Manage 19903 (suppl):Sl. 23. Friedman DP. Perspectives on the medical use of drugs of abuse. J Pain Symptom Manage 1990; 5(suppl):S2-S5.
312 Journal of Pain and Symptom Management
tIhigint&l Mcle
The Experience of Chronic Nonmalignant Laura S. Hitchcock,
PhD, Betty R Ferrell, PhD, and Margo McCaffery,
RN
National Chronic Pain OutreachAssociation(L.S.H.), Bethesda, Maryland; CityofHope National Medical Center {B. R.F.), Duarte, Calijbrnia; and Consultant and Lecturer (M. M.), Los Angels, Ca@rnia
This article reports the results of a survty of 204 persons with chronic nonmalignant pain who were members of a national self-help organization. The survey evaluated the organization, explored the perceived effHt of pain on quality of life, and assessed experiences with and perceptions of health-careprovtders. Response rate was 40%. Of survey respondents, 50% reported inadequate pain relief: Respondents identified d@ression as one of the worstprobIem.s caused by their chronic pain: 50% reported that they had considered suicide due tofeelings of hopehssness associated with their-pain, 51% reported taking only as much medication as prescribed, and 44 % reported taking less medication than pmscribed. Further investigation is needed to &cribe the personal im@ct of chronic nonmalignant pain. J Pain Symptom Manage 1994;9:312-318. Key Wmd Chronic nonmalignant pain, addiction, analgesics, quality of life, self-help organization, s&i&
Ahbough chronic nonmalignant pain is acknowledged as one of tbe most pervasive and expensive health-care problems today, little research has been devoted to identifying the characteristics, perspectives, and attitudes of affected patients, including the impact of pain on quality of life. The Nuprin Pain Report, a nationwide survey conducted in 1985 on a random sample of adult Americans, revealed that 20.8 million people experienced pain for 101 days or more during the previous year.’ Address ybrint requests to: Laura S. Hitchcock, PhD, The National Chronic Pain Outreach Association, 7979 Old Georgetown Road, Suite 100, Bethesda, DID 208142429, USA. Acceptedfmpublication:December 23, 1993. 0 U.S. Cancer Pain Relief Committee, 1994 Published by Elsetier, New York, New York
This finding, however, probably underestimates the prevalence of the problem because it excluded those who experience severe pain that is intermittent or episodic in nature, such as migraine headaches or sickle-cell crisis. The Nuprin Report found that pain was reported as severe or unbearable in over one-third of respondents with joint or back pain. Such pain can have highly destructive effects; indeed, recent animal research suggests that unrelieved pain can even adversely affect physio!ogic functioning, including immune system processes.23 Because chronic cancer pain seems to have a major influence on all aspects of quality of life (QOL), it might be surmised that any type of pain, regardless of its cause, might have significantly negative effects on QOL. In contrast to
ofm-3924/94/$7.00
vol. 9 No. 5Jdy 1994
The Experience oJChronic Nonmalignant Puirz
patients with chronic cancer pain, however, patients with chronic nonmalignant pain are a far more diverse group.4 Some patients have pain related to musculoskeletal injury or soft tissue pathology, such as degenerative joint pain, muscle tears, or myofascial pain; others have pain related to neurologic changes, such as diabetic peripheral neuropathy, trigeminal neuralgia, or postherpetic neuralgia. Some patients report pain that has lasted for as little as 6 months, while others report pain of more than 10 years duration. For some patients, pain is present almost all the time, while others experience pain intermittently. Common treatment approaches for chronic nonmalignant pain range from nondrug methods such as physical therapy, exercise, stress management training, and biofeedback, to the combined use of these methods with medications such as nonopioids, opioids, and adjuvant analgesics. Other therapies are more invasive, such as trigger-point injections, nerve blocks, and surgery. Quality of life is a multidimensional concept that involves several domains, including physical well-being, psychological b&-being, spiritual well-being, and social well-being.” In cancer patients, QOL is affected by the disease itself, the symptoms associated with the disease, and by the various modalities used to treat the cancer.” The meaning of QOL differs from one individual to another, and QOL measurement provides a means to compare the distress associated with various conditions by different patients. Chronic nonmalignant pain also may dramatically affect QOL. For example, the potentially negative effects of pain on the ability to perform physical activities are repeatedly mentioned in the literature.7~s In fact, the success of a pain clinic’s program is often measured by the degree of improvement in physical activities, especially work-related activities.” In a recent study, researchers randomly surveyed individuals listed in a Kentucky phone book and asked whether respondents were currently in pain of any type or had experienced pain of any type in the past. This survey found that all respondents who reported being in pain at the time of the sux~y experienced limitation of their activities, and that even those who had recovered from acute or chronic pain reported continuing limitation of their activi-
to
313
ties. Among respondents experiencing pain at the time of the survey, comparisons of the amount of psychological, physical, and economic stress related to pain revealed that physical stress was the most pronounced. These stresses increased with length of time in pain. In a study of nursing home residents with pain, 53% of subjects stated that pain impaired ambulation, 45% reported sleep disturbances related to pain, and 49% reported that pain impaired posture. ’ t Other effects of pain included constipation, impaired appetite, incontinence, and impaired dressing or grooming ability. Recently, Swedish researchers used a S-day diary to collect detailed information about the daily lives of 58 subjects with fibromyalgia. Although 55% were employed, they were working shorter hours and needed to change to less strenuous tasks at their jobs. Tasks such as carrying, holding, and running were rated as difftcult to perform. Two-thirds of subjects reported no pain-free periods or very short pain-free periods during the study.‘” Studies of patients with chronic nonmalignant pain have also revealed that psychological well-being may be significantly affected by pain, again similar to patients with cancer pain. A critical review of the literature affirmed that the prevalence of depression is substantially higher in these patients than those without pain.‘a Early detection of suicidal ideation in patients admitted to pain clinics is now advocated.‘” In a study of nursing home residents with chronic pain, subjects reported that pain caused depression (32%), anxiety (26%), and impaired memory (12%).” The latter study of nursing home residents also reported that 54% of subjects had pain that impaired their ability to enjoy social activities, such as group meals, visiting with friends and relatives, and recreational activities.’ i Researchers are also now beginning to study the negative effects of chronic pain on marital relationships. For example, in a study of 51 persons with pain, serious difftculties were found in almost all aspects of couple functioning; depression was a significant factor in this marital dysfunction.tg This paper reports the results of a Survey of 204 individuals with chronic nonmalignant pain who were members of a national selflhelp organization. The purposes of the study were
314
Vol. 9 No. 5July 1994
HitchcocRet al.
(a) to determine whether the organization was perceived by its members as meeting their needs, (b) to explore how respondents perceived the effect of pain on their QOL, and (c) with and to explore members’ experiences perceptions of health-care providers.
Methods Population and Sample Subjects were members of the National Chronic Pain Outreach Association (NCPOA), all of whom experienced chronic nonmalignant pain (N = 500). NCPOA members learn about the organization through word of mouth, family and friends, reports in the media, and referral from other organizations, self-help directories, and health-care professionals with whom they come into contact. Members typically contact NCPOA for information and may subsequently join the organization. Thus, this is a self-selected group of pain patients who are actively interested in better managing their pain. Pr.2).ious demographic data collected from members in 1988 indicates that the majority of NCPOA members are female and that their average annual household incomes and levels of education are above national averages. NCPOA currently has members in all 50 states, as well as in Canada and other foreign countries.
SwweyQuestionnaire A 5-page questionnaire developed by the authors for this study was used to gather information. The questionnaire contained 46 questions. At the end of the questionnaire, respondents were invited to make additional comments.
Results Demographics A total of 204 persons (40% response rate) returned the questionnaire. This selected group ranged in age from 19 to 90 years old, with an average age of 47 years; 75% held graduate degrees. Overall, 91% had at least some college education. The average annual household income was approximately $43,000, with 47% reporting an annual income of $40,000 or more. Respondents lived in 37 states, with the greatest number living in the states of California, Maryland, New York, and Virginia. Respondents had experienced pain for an average of 9.5 years, with a range of 6 months to 74 years. The average length of NCPOA membership was slightly over 2 years. Approximately one-half of the subjects had participated in a chronic pain support group at some point, but slightly less than one-third reported current involvement with a pain support group.
Pain Intensity The average subject experienced pain 80% of the time (Table 1). Pain intensity was measured using a 5point scale with 0 equal to no pain and 5 equal to the worst pain possible. Usual pain intensity for the month prior to the survey was reported as 4 or 5 by 30% of the subjects; 3 by 50% of the respondents; and 2,1, or 0 by 25% of the respondents. Using the same bpoint scale, subjects were asked to rate the intensity of the worst pain experienced in the month prior to the survey. The average response was 4.4. Subjects reported experiencing “the worst pain possible” 31% of the time. Table 1 Reportsof PainIntensity Question
Procedure The survey questionnaire was mailed to all NCPOA members. A letter accompanying the questionnaire explained the reasons for the smvey. A stamped addressed envelope was included for respondent convenience. Due to limited financial and personnel resources of NCPOA, a non-profit organization, no followup of nonresponders was conducted.
hfxe
Mean Median
What is the Ural intensity” of your pain?
O-5
3.2
2.8
What is the wmt intensity” of your pain? What percentof the time do you have pain? What percent of the time do you have the worst pain?
3-5
4.4
4.0
5-100%
80%
90%
17-100%
31%
20%
“Scalu: 0 = uo pail] to 5 = the worst possible pain.
The Expedienceof Chronic Nonmalignant Pain
Vol. 9 No. 5 Jdy 1994
Table 2
-es
of Pain Reported to be MostBothersome Percent of subjects reporting
Type of pain Back Neck Myofascial/fibromyalgia Hips, buttocks, legs, and feet Headaches Arthritis Shoulders, arms, and hands Thoracic outlet syndrome Neuropathic pain Chest or abdomen
47 20 17 17 8 6 5 5 5 5
NOWOne-third ~fsubjccs rcprtcd morr than one “twst bothcrsomc” pain problem.
Trpes of Pain Problems Table 2 identifies the types of pain listed by subjects as being the “most bothersome.” The majority of subjects reported multiple pain problems with the average subject identifying five pain problems. One-third of the subjects listed more than one “most bothersome” pain prob lem despite the instruction to choose only one. Of the subjects, 47% reported back pain as the most bothersome type of pain. Other types of pain included neck pain (20%); myofascial pain or fibromyalgia (17%); pain in the hips, buttocks, legs, or feet (17%); headaches (8%); arthritis (6%); shoulder, arm, or hand pain (5%); thoracic outlet syndrome (5%): neuropathic pain (5%); and chest or abdominal pain (5%).
Medication Use Table 3 identifies the pain medications taken by survey respondents. Nonprescription medications accounted for 25% of those reTable 3 Medications Prescribed for Pain Medications that were prescribed for the pain
Percent of subjects reporting use
“Mild” opioids (e.g., propoxypbene with codeine) N!WDs “Strong” opioids (e.g., morphine) Aspirin and acetaminophen Antidepressants Muscle relaxants Tranquilizetx/sleeping pills prescribed for pain relief NWJk.. nollswroidal antiinflamrra~o~drugs.
28 22 15 11 I1 8 4
315
corded; prescription medications accounted for 75%. The most frequentiy identified medications were “mild” opioid analgesics (28k), such as propoxyphene or acetaminophen with codeine. The next most frequently reported category of medication was nonsteroidal antiinflammatory drugs (NSAIDs) (22%). “Strong” opioids were the next most frequently prescribed category (15%)) which was followed by aspirin and acetaminophen products (110/o), antidepressant medications (1 l%), muscle relaxants (8%), and tranquilizers or sleeping pills prescribed for pain control (4%). The most common medication side effect was constipation (35%). Other reported side effects included drowsiness (25%), nausea and vomiting (15%)) confusion ( 1 I%), and bleeding (4%). Respondents were also asked about the amount of medication they were taking in relation to the amount prescribed by their physicians: 51% reported taking only the amount of medication prescribed by their physicians, 41% reported taking less medication than prescribed, and 5% reported taking more than prescribed. When asked how effective their medications were in relieving their pain on a usual day, 50% reported inadequate pain relief. The majority of respor:dents (57%) who reported inadequate pain relief believed that they would need a stronger medication for adequate pain relief rather than a higher dosage of the same medication. Other substances used to relieve their pain (Table 4) included tranquilizers and sleeping pills (34%), alcoholic beverages (240/o), and medications prescribed for other reasons such as nausea or allergy problems (33%). The use of sleeping pills and tranquilizers that were not prescribed for pain (34%) was much higher Tdie 4 Medications ‘&ken for Pain But Not Prescribed for Pain Medications not prescribed but used for pain Alcohol Medicines prescribed for other reasons (antiemetics, allergy medications, etc.) Tranquilizers/sleeping pills prescribed for other reasons but used for pain
Percent of subjects 24 33 34
VOL 9 N/3. 5July I994
Hitchcock et al.
316
Table 5
What Are the Three Worst Problems That You Have Because of YO.C Chrotic Pain? Problem Not able fo work or do household chores Limitations on activities and hobbies Depression Fatigue Diff~cuity in fulfilling role as spouse Uncertainty about the future Lack of pain control Change in life-style/decrease in social contact Decreased mobility Unable to sleep
than the use of these dn;gs that were specifically for pain (4%). A total of 41% of respondents reported that their physicians had refused to prescribe enough pain medication to relieve their pain. Among the reasons reported by individuals in this group were the physician’s belief that patients should not take medications on a long-term basis; the belief that the patient’s report of pain was not severe enough to prescribe medication or that the patient should be able to “handle” even severe pain without using any medication; physician concerns about adverse side effects related to the medications; and physician fear ofjeopardizing one’s medical license by prescribing opioids.
Attitudes Related to Addiction Two survey questions addressed the subjects’ beliefs about addiction resulting from the use of opioid analgesics. The first was based on a common medically accepted definition of addiction and asked, “Narcotic addiction is defined as an overwhelming need to get and use prescribed pain pills for their psychological effects, not for medically approved reasons. Using this definition, how likely do you believe it is that ‘addiction will occur as a result of treating pain with narcotic medications?” Of the subjects, 57% indicated that less than 5% of patients experiencing chronic pain are likely to become addicted to opioid drugs, The second question asked, “How likely would it be that you would continue to take pain pills if you no longer had any pain?” Of the respondents, 99% stated that they would not be likely to continue taking pain pills if they were pain free.
Percent of subjects reporting the problem 36 28 23 15 14 11 10 9 8 8
The Impact of Chronic Pain on Quality of Life The questionnaire included a number of questions designed to evaluate the impact of chronic pain on QOL. The first question asked, “When you are around other people, how important is it for you to act normal and hide any behaviors (e.g., frowning, groaning) that would let people know you are in pain?” A 5point scale was used, ranging from 0 = not at all important to 5 = a great deal. Of the respondents, 66Y0 reported that it was important (scores of 4 or 5) to try to keep others from noticing their pain. When asked whether they believed that their pain affected their personal relationships, 71% stated that it did” 87% reported that pain interfered significantly (scores of 3 or greater on a 5-point scale) with normal activities, such as gardening, reading, or travel. Despite their responses, when asked, “How gcod is your quality of life?” 57% rated their QOL as 3 or greater on a 5-point scale (0 = poor quality of life to 5 = good quality of life). Another question asked subjects whether they felt that they were generally “in control of things, of your life?” A total of 55% reported that they generally felt in control of their lives. However, when asked, “Do you ever feel hopeless about your pain problems?” A majority (69%) reported that they do feel hopeless, and 50% of the subjects answered afIirmatively to the question, “Have you ever felt so hopeless about your pain that you have seriously considered suicide?” The last question concerning QOL asked, “What are the three worst problems you have because of your chronic pain?” In descending order, the most common problems were not
Vol. 9 No. 5 Juty 1994
The Expience
of Clonic Nonmaliptant Pain
being able to work at a job or do household chores; limitations on activities and hobbies; depression; fatigue; difficulty in fulfilling one’s role as a spouse; uncertainty about the future; lack of pain control; life-style changes and decreased socializing; decreased mobility; and difficulty sleeping (Table 5).
Use ef Health-Care Services Another section of the survey addressed the respondents’ experiences related to medical treatment for pain management. The average subject had sought treatment for their pain from ten different health-care providers and had visited a health-care provider on the average of ten times during the previous year. In descending order, respondents chose the foilowing types of primary-care practitioners to provide pain management: internists and general practitioners, psychiatrists, physical therapists, neurologists, rheumatologists, orthopedic surgeons, pain specialists, anesthesiologists, psychologists, and chiropractors. Neurologists and orthopedic surgeons were most frequently consulted ahout pain problems. Respondents were also provided with a list of 23 nondrug pain therapies and were asked to identify the methods they had used. In descending order, these methods were changing position, applying heat, mild exercise, massage, pressure or vibration, and listening to music. The methods identified as being the most helpful, in descending order, were applying heat, changing position, massage, pressure or vibration, cold or ice, meditation or prayer, watching W, talking with someone, laughing, Jacuui/hot tub, mild exercise, listening to relaxation tapes, and listening to music.
Value ofthe Self-helpOrganization The final section of the survey asked subjects to rate the importance and value of NCPOA’s services. Respondents rated the organization’s quarterly newsletter as the most important service provided. Ranked next in importance were NCPOA’s pamphlets and publications, while its cassette tapes were ranked third. When asked what new services they felt were most needed from NCPOA, respondents cited more specific information about chronic pain conditions and treatments more frequently. The second most frequent request was to publish the newsletter more often.
31i
A total of 68 respondents (33%) wrote comments on their surveys. These responses have been included in a booklet published by NCPOA.“’ The comments centered around five themes: (a) difficulty in finding medical help to diagnose and treat their pain, (b) ways in which chronic pain affected their lives, (c) a sense that other people did not believe that they were in pair. or understand what it means to experience chronic pain, (d) personal strategies for coping with chronic pain, and (e) services desired from NCPOA. Such comments provided considerable qualitative data about concerns and feelings related to living with chronic pain,
Because the respondents are a select subset of persons with chronic nonmalignant pain, the results and possible implications of this survey must be viewed with some caution. The individuals participating in this survey were members of a self-help organization and had taken time to respond to the questionnaire. This suggests that the subjects had assumed some degree of responsibility for managing their chronic pain. In addition, most subjects were well-educated, with average or better-than-average financial resources and intact marriages. The responses of the survey reveal that chronic pain has a highly negative impact on QOL even in this selected population. Although 57% of subjects rated overall QOL in the fair to good range, a closer look at responses to specific questions suggests that QOL was threatened by a number of factors. Perhaps the most alarming is the observation that, in spite of their substantial educational and financial resources, 50% of subjects had considered suicide. ‘This illustrates the enormous impact of chronic pain and adds to the growing evidence that chronic pain can be life-threatening. It supports the suggestion by Livengood and Parris I4 that early detection of suicidal ideation is important in this population of patients. Responses regarding medication usage for pain relief suggest that side effects, especially constipation and drowsiness, may not have been well managed. Overuse of analgesics was not apparent, although alcohol was used for pain relief by 24% of the subjects. Half of the respondents reported inadequate pain relief
Hitchcock et al.
318
medications, and 41% reported the perception &at physicians refuse to prescribe enough medication to achieve effective pain from
control. Subjects also reported considerable interest in obtaining more information about their conditions and treatment options. Health-care providers may find it useful to increase written and verbal information to patients regarding medication, their side effects, and the possible subjects also causes of their pain. Because indicated difticulty in finding medical help, increased patient teaching might be effectively coupled with increased attention to providing information about appropriate referrals for patients with chronic pain. This survey suggests the need for further investigations of the perceptions and practices of persons with chrouic pain, including the relationship between pain and QOL. The study findings provide descriptive data on a very Further research should select population. include more diverse populations with additional measures of pain and QOL.
Ackmwle~mts We gratefully acknowledge the assistance provided by the Purdue Frederick Company through a grant to facilitate the collection and tabulation of data. The assistance of Daniel A. Hitchcock, PhD, was invaluable in the technical preparation of this article, including the figures and tables. Most of all, we thank the members of NCPOA who gave generously of their time and knowledge by responding so thoroughly and quickly to the survey.
W
H. The Nuprin pain report. Louis Harris and Associates, 1985.
6. Ferrell BR, Wisdom C, Wenzl C. Quality of life as an outcome variable in the management of cancer pain. Cancer 1989;63:2321-2327. 7. Council JR, Abern DK, Follick MJ, Kline CL. Expectancies and functional impairment in chronic low back pain. Pain 1988;33:323-331. 8. Dolce JJ, Cracker MF, Moletteire C, Doleys DM. Exercise quotas, anticipatory concern and selfefficacy expectancies in chronic pain: a preliminary report. Pain 1986;24:365-372. 9. Kores RC, Murphy WD, Rosenthal TL, Elias DB, North WC. Predicting outcome of chronic pain treatment via a modified selfefficacy scale. Behav Res Ther 1990;28:165-169. 10. WilsonJF, Brockopp GW, Steger HG. Quality of life patterns in patients who have suffered chronic pain: results of a statewide survey. Presented at the American Pain Society, San Diego, CA, October 1992. 11. Ferrell BA, Ferrell BR, Osterweil D. Pain in the nursing home. J Am Geriatr Sot 1990;38:409-414. 12. Hem&son C, Gundmark I, Bengston A, Ek AC. Living with fibromyalgia: consequences for everyday life. Clin J Pain 1992;8:138-144. 13. Turner JA, Roman0 JM. Self-report screening measures for depression in chronic pain. J Clin Psych 1984;40:909-913. 14. Livengood JM, Parris WCV. Early detection measures and triage procedures for suicide ideation in chronic pain patients. Clin J Pain 1989;8:164-169. 15. Thomas M, Roy R. Pain patients and marital relations. Clin J Pain 1989;5:255-259. 16. Hitchcock L, ed. Living with chronic pain: personal experiences of pain sufferers. Bethesda, MD: National Chronic Pain Outreach Association, 1992. 17. Jensen MP, Turner JA, Roman0 JM, Karoly P. Coping with chronic pain: a critical review of the literature. Pain 1991;47:249-283.
18. Jensen MP, Karoly P. Pain-specific beliefs, perceived symptom severity, and adjustment to chronic pain. Clin J Pain 1992;8:123-130.
erences
1. Taylor
Kd. 9 No. S.Ju& 1994
New York:
2. Dubner R. Pain and hyperalgesia following tissue injury: new mechanisms and new treatments. Pain 1991;44:213-214. 3. Liebeskind JC. Pain can kill. Pain 1991;44:3-4. 4. BonicaJJ. General considerations of chronic pain. In: BonicaJU, ed. The management of pain. Philad& phia: Iza and Febiger, 1990:180-196. 5. Ferrell BR, Rhiner M, Cohen MZ, Grant M. Pain as a metaphor for illness. I. Impact of cancer pain on family caregivers. Oncol Nurs Forum 1991;18:1~03_ 1309.
19. Kremer EF, Block A, Gaylor MS. Behavioral approaches to treatment of chronic pain: the inaccuracy of patient self-report measures. Arch Phys Med Rehabil 1981;62:188-191. 20. Ready LB, Sarkis E, Turner JA. Self-reported versus actual use of medications in chronic pain patients. Pain 1982;12:285-294. 21. Cleeland CS. Barriers to the management cancer pain. Oncology 1987;l (suppl):19-26,
of
22. Foley K. Preface. J Pain Symptom Manage 19903 (suppl):Sl. 23. Friedman DP. Perspectives on the medical use of drugs of abuse. J Pain Symptom Manage 1990; 5(suppl):S2-S5.