the experience of chronic nonmalignant pain

312 Journal of Pain and Symptom Management ti’. 9 No. 5 July 1994

tIhigint&l Mcle

The Experience of Chronic Nonmalignant Laura S. Hitchcock, PhD, Betty R Ferrell, PhD, and Margo McCaffery, RN National Chronic Pain Outreach Association (L.S.H.), Bethesda, Maryland; City ofHope 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-care provtders. Response rate was 40%. Of survey respondents, 50% reported inadequate pain relief: Respondents identified d@ression as one of the worst probIem.s caused by their chronic pain: 50% reported that they had considered suicide due to feelings 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 Associa- tion, 7979 Old Georgetown Road, Suite 100, Be- thesda, DID 208142429, USA.

Acceptedfmpublication: December 23, 1993.

This finding, however, probably underesti- mates 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 unre- lieved 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

0 U.S. Cancer Pain Relief Committee, 1994 Published by Elsetier, New York, New York ofm-3924/94/$7.00

vol. 9 No. 5Jdy 1994 The Experience oJChronic Nonmalignant Puirz 313

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 sur-

gery. Quality of life is a multidimensional concept

that involves several domains, including physical well-being, psychological b&-being, spiri- tual 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 dra- matically affect QOL. For example, the poten- tially negative effects of pain on the ability to perform physical activities are repeatedly men- tioned 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. to 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-

ties. Among respondents experiencing pain at the time of the survey, comparisons of the amount of psychological, physical, and eco- nomic 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, in- continence, and impaired dressing or groom- ing 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 HitchcocR et al. Vol. 9 No. 5 July 1994

(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) to explore members’ experiences with and

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 profes- sionals 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 coun- tries.

Swwey Questionnaire 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.

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 follow- up of nonresponders was conducted.

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. Approxi- mately one-half of the subjects had participated in a chronic pain support group at some point, but slightly less than one-third reported cur- rent 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 Reports of Pain Intensity

Question hfxe Mean Median

What is the Ural O-5 3.2 2.8 intensity” of your pain?

What is the wmt 3-5 4.4 4.0 intensity” of your pain?

What percent of the time 5-100% 80% 90% do you have pain?

What percent of the time 17-100% 31% 20% do you have the worst pain?

“Scalu: 0 = uo pail] to 5 = the worst possible pain.

Vol. 9 No. 5 Jdy 1994 The Expedience of Chronic Nonmalignant Pain 315

Table 2 -es of Pain Reported to be

Most Bothersome

Percent of subjects Type of pain reporting

Back 47 Neck 20 Myofascial/fibromyalgia 17 Hips, buttocks, legs, and feet 17 Headaches 8 Arthritis 6 Shoulders, arms, and hands 5 Thoracic outlet syndrome 5 Neuropathic pain 5 Chest or abdomen 5

NOW One-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 re-

Table 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

28

22 15 11 I1 8 4

NWJk.. nollswroidal antiinflamrra~o~ drugs.

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 anti- inflammatory drugs (NSAIDs) (22%). “Strong” opioids were the next most frequently prescribed category (15%)) which was followed by aspirin and acetaminophen prod- ucts (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 bleed- ing (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 Percent of but used for pain subjects

Alcohol 24 Medicines prescribed for other reasons 33

(antiemetics, allergy medications, etc.) Tranquilizers/sleeping pills prescribed 34

for other reasons but used for pain

316 Hitchcock et al. VOL 9 N/3. 5July I994

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

Percent of subjects reporting the problem

36 28 23 15 14 11 10 9 8 8

than the use of these dn;gs that were specifi- cally 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.

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 31i

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 thera- pists, neurologists, rheumatologists, orthopedic surgeons, pain specialists, anesthesiolo- gists, psychologists, and chiropractors. Neurol- ogists 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 of the Self-help Organization 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.

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

318 Hitchcock et al. Kd. 9 No. S.Ju& 1994

from medications, and 41% reported the per- ception &at physicians refuse to prescribe enough medication to achieve effective pain

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

causes of their pain. Because subjects also

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

select population. Further research should

include more diverse populations with addi-

tional 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 techni-

cal 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.

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the experience of chronic nonmalignant pain

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