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Self-reported Arthritis-Related Disruptions in Sleep and Daily Life and the Use of Medical, Complementary, and Self-care Strategies for Arthritis
The National Survey of Self-care and Aging
Joanne M. Jordan, MD, MPH;
Shulamit L. Bernard, PhD;
Leigh F. Callahan, PhD;
Jean E. Kincade, PhD;
Thomas R. Konrad, PhD;
Gordon H. DeFriese, PhD
Arch Fam Med. 2000;9:143-149.
ABSTRACT
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Objective To assess relations between self-reported arthritis-related disruptions in sleep, physical activity, and social functioning and use of medical care, complementary therapies, and self-care for arthritis in older adults.
Design A survey of self-reported arthritis-related disruptions in sleep and daily life as risk factors for use of 15 medical, complementary, and self-care modalities for relief of arthritis symptoms.
Setting General community from 38 urban and 12 rural areas in the contiguous United States.
Participants Nine hundred thirty-seven older persons reporting arthritis; of the 1925 in the 1993 to 1994 follow-up of the National Survey of Self-care and Aging, a population-based, stratified, random sample of noninstitutionalized Medicare beneficiaries aged 65 years and older.
Main Outcome Measures Use of 15 medical, self-care, and complementary modalities for relief of arthritis symptoms.
Results Most respondents reported use of at least 1 medical, complementary, or self-care strategy for arthritis. Arthritis was reported to disrupt sleep and leisure in 32.8% and 33.4% of respondents, respectively. Individuals with sleep disruption were more likely than those without sleep disturbance to use medical, complementary, and self-care strategies (adjusted odds ratio [95% confidence interval], 2.31 [1.59-3.37] for seeing a physician; and 2.23 [1.60-3.10] for using physical modalities). Reported disruption in sleep from arthritis was associated with use of more medical, complementary, and self-care strategies than was any other disruption.
Conclusions Self-reported arthritis-related disruption in sleep is associated with use of a wide range of medical, complementary, and self-care strategies. Physicians, other health care providers, and researchers should not overlook the importance of this common and often-neglected symptom.
INTRODUCTION
ARTHRITIS AND musculoskeletal disorders are responsible for annual direct and indirect medical costs of $149 billion in the United States.1 Arthritis is the most common cause of disability in those aged 65 years and older,2-3 is commonly associated with pain and fatigue, and can disrupt sleep and multiple aspects of daily life, including family, occupational, and social roles.3-12 Sleep disturbance is also common in aging populations, reported by more than half of noninstitutionalized American persons aged 65 years and older,13-14 and the direct costs of sleep disorders may be more than $15 billion, according to a 1990 report from the US Commission on Sleep Disorders Research.15-16 However, only about 30% of those with sleep disruption seek medical care for this problem, relying instead on various self-care strategies.16
Individuals with arthritis typically engage in numerous conventional and nonconventional strategies of self-care to ease discomfort or disability associated with arthritis.17-25 Study of the determinants of use of formal medical care, complementary therapies, and informal self-care for the therapy of arthritis has included the role of sociodemographic factors and some disease-related features, such as functional status, diagnosis, or disease duration.19-20,22-23,25-26 For example, Arcury and colleagues19 reported in a study of lower-income individuals in a rural, southern community that women were more likely than men to use prayer to deal with arthritis and that African Americans were more likely to use nonconventional therapies than whites.19 Callahan and colleagues26 reported in the 1993 to 1994 National Follow-up Survey of Self-care and Aging that those with lower educational attainment were more likely than those more highly educated to see a chiropractor, use over-the-counter medications and ointments, and pray to obtain relief from arthritis symptoms.
How the consequences of arthritis influence the use of self-care, complementary therapies, and medical care has not received extensive study.20, 25 We examined relations between self-reported arthritis-related disruptions in sleep, physical function, and social engagement and the use of medical, complementary, and self-care strategies in the National Follow-up Survey of Self-care and Aging, a population-based national survey of self-care in American adults aged 65 years and older.
PARTICIPANTS AND METHODS
SAMPLE
The sample was drawn from the 1993 to 1994 follow-up of the National Survey of Self-care and Aging. Details of the study design have been reported.27-28 In brief, this national survey included Medicare beneficiaries in the contiguous United States who were not residing in a nursing home or domiciliary care facility and who were aged 65 years and older in 1989. Subjects were selected according to a stratified random sampling scheme, with approximately equal numbers of men and women in each of 3 age groups (65-74, 75-84, and  85 years), clustered within 50 primary sampling units in 38 urban and 12 rural areas across the United States. The baseline in-person interview was conducted from 1990 to 1991, and the follow-up telephone interview, used in this analysis, was conducted 3 years later.
The Institutional Review Board of The University of North Carolina School of Public Health, Chapel Hill, approved this study, and informed consent was obtained from all participants or their proxies before the interview.
INTERVIEW VARIABLES
The follow-up sample used in this analysis was composed of individuals who reported arthritis and the presence of any pain, stiffness, or swelling that limited activity during the 12 months before the interview. All individuals were asked whether they had used any of 15 medical, complementary, and self-care modalities to treat their arthritis. These included calling or seeing a chiropractor; calling or seeing a physician; using prescription medications; using nonprescription medications; using nonprescription ointments or rubs; using special foods; using special jewelry, bee sting, snake venom, or similar therapy; using physical treatments such as heat, cold, splints, or massage; using counseling, support groups, or arthritis classes; using biofeedback; praying; using relaxation or meditation techniques; resting or limiting activities; swimming; and doing other exercise.
Respondents were also asked if their arthritis (1) caused them to move around less; (2) kept them from sleeping; (3) caused them to decrease any usual activities such as work, household chores, or errands; (4) kept them from visiting with family or friends in their own home; and (5) kept them from doing pleasurable activities such as hobbies and recreation. Frequency of arthritis pain was reported in 5 categories, ranging from never to daily. Perceived health status was reported as excellent, very good, good, fair, or poor.
STATISTICAL METHODS
All analyses were performed on a microcomputer using software (version 5.0; STATA Corp, College Station, Tex). Descriptive statistics were calculated, and unadjusted associations among variables were assessed with  2 tests. Statistical significance was inferred if P<.05 or if the 95% confidence interval (CI) for the odds ratios (ORs) did not include the null. Infrequently used self-care strategies were combined with other related activities. Multiple logistic regression was used to assess the role of arthritis-related disruptions in daily life on the use of each medical, complementary, and self-care strategy while controlling for age group, sex, race, rural or urban residence, educational attainment, number of persons living with the respondent (none vs other), arthritis pain (daily vs other), and perceived health status (fair or poor vs excellent, very good, or good).
RESULTS
CHARACTERISTICS OF THE SAMPLE
Of the 3485 participants in the original sample, 2310 (66.3%) were known to be living in the community at follow-up. One hundred seventeen (3.4%) were residing in a nursing home, 772 (22.2%) were deceased, and 286 (8.2%) were presumed alive but were lost to follow-up. Of those 2310 still residing in the community, follow-up interviews were conducted with 1925 respondents or their proxies (83.3%). Comparisons between the 1925 respondents and the 385 (16.7%) who refused participation revealed no meaningful differences in baseline arthritis self-report or function (data not shown).
Nine hundred thirty-seven individuals reported that they had had arthritis that limited their activities within the last 12 months. Demographic and health status characteristics of this sample are listed in Table 1.
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Table 1. Characteristics of the Study Sample: National Follow-up Survey of Self-care and Aging
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USE OF FORMAL AND INFORMAL ARTHRITIS SELF-CARE
Table 2 shows the frequencies in ascending order with which respondents reported use of medical, complementary, and self-care strategies. Use of biofeedback, meditation, counseling, arthritis self-help classes, and support groups was infrequent, and these categories were combined. Similarly, use of special foods and jewelry was not common, and these categories were combined, as were the categories of swimming and other forms of exercise.
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Table 2. Use of Medical, Complementary, and Self-care Strategies for Arthritis
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As expected, daily arthritis pain was strongly associated with use of 5 of 11 strategies: praying (P = .02), seeing a physician, using prescription medications, using physical treatments, and resting (P<.001). Similarly, those with fair or poor health status were more likely to report seeing a physician, using prescription medications, using over-the-counter ointments, using physical treatments, praying, and swimming or exercising (P<.007).
ARTHRITIS-RELATED DISRUPTIONS IN DAILY LIFE
Arthritis was reported to disrupt sleep and leisure activities each in approximately one third of the sample. Table 3 shows the frequencies in ascending order with which participants reported arthritis-related disruptions in daily life.
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Table 3. Frequency of Arthritis-Related Disruptions in Daily Life
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UNADJUSTED ASSOCIATIONS BETWEEN ARTHRITIS-RELATED DISRUPTIONS AND CARE STRATEGIES
Of all the arthritis-related disruptions, sleep disruption was associated with the use of the most self-care, complementary, and medical modalities. Sleep disruption was strongly associated with the use of 10 of 11 strategies, all except swimming or exercising (data not shown). People with self-reported arthritis-related sleep disruption were almost 4 times more likely than those without sleep disruption to see a physician (OR, 3.66; 95% CI, 2.63-5.08) and 70% more likely than those without sleep disruption to see a chiropractor (OR, 1.72; 95% CI, 1.11-2.66).
Nine of 11 self-care strategies—all except swimming or exercising and seeing a chiropractor—were used to cope with arthritis that caused an individual to move around less, with ORs ranging from 3.69 (95% CI, 2.76-4.94) for seeing a physician to 1.35 (95% CI, 1.02-1.77) for using over-the-counter medications. Similar associations were seen between self-care strategies and arthritis that interfered with the ability to do chores and errands (data not shown).
Arthritis-related disruption in leisure activities was associated with use of 6 of 11 strategies, including using physical treatments; using biofeedback, meditation, or counseling; using over-the-counter ointments; seeing a physician; using prescription medications; and resting. Last, disruption in the ability to visit with friends or family was associated with seeing a physician (OR, 4.72; 95% CI, 1.90-11.74); using prescription medications (OR, 2.09; 95% CI, 1.11-3.94); resting (OR, 3.78; 95% CI, 1.52-9.42); and using physical treatments (OR, 1.81; 95% CI, 0.98-3.33), the latter having borderline statistical significance.
ADJUSTED ASSOCIATIONS BETWEEN ARTHRITIS-RELATED DISRUPTIONS AND CARE STRATEGIES
Table 4 shows the adjusted associations between self-reported arthritis-related disruptions and the use of medical, complementary, and self-care strategies. In models adjusted for age group, sex, race, educational level, rural or urban residence, living alone status, frequency of arthritis pain, perceived health status, and the presence of the other arthritis-related disruptions, sleep disruption remained strongly and independently associated with use of all self-care strategies, except swimming or exercising and using biofeedback, meditation, or counseling (the association of sleep disruption with resting was of borderline statistical significance).
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Table 4. Associations Between Medical, Complementary, and Self-care Strategies and Arthritis-Related Disruptions in Daily Life*
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Arthritis that reportedly interfered with completion of chores and arthritis that caused the respondent to move around less were each independently associated with the use of 4 strategies, 3 of them common to both disruptions: seeing a physician, using prescription medications, and resting. In addition, arthritis that reportedly interfered with completion of chores was also independently associated with the use of special foods or jewelry and prayer, while arthritis that caused a respondent to move around less was also independently associated with the use of physical treatments.
Disruption in leisure activities was independently associated only with using biofeedback, meditation, or counseling and resting. Finally, disruption in the respondent's ability to visit with family and friends in the respondent's own home was not independently associated with the use of any of the self-care, medical, or complementary modalities. Figure 1 shows the number of self-care strategies independently associated with each arthritis-related disruption.
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Number of self-care strategies used by participants with arthritis-related disruptions in movement, sleep, chores, and leisure activities.
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COMMENT
This is the first study of determinants of medical care, self-care, and complementary care use for arthritis symptoms in a large, nationally representative, sex-balanced sample of older American adults. While sociodemographic factors, perceived health status, and arthritis pain might be expected to influence the use of arthritis self-care and medical strategies, self-reported disruptions in daily life from arthritis were most influential in determining strategies used. In particular, our results underscore the importance of self-reported arthritis-related sleep disruption in determining the use of a wide range of formal and informal self-care for arthritis.
Previous studies19-23,25 of arthritis self-care have examined the roles of sociodemographic factors and some arthritis-related characteristics, such as pain, disease duration, and functional status, in determining the use of remedies. One study that examined the roles of disruptions in life from arthritis found that these disruptions were most predictive of nonprescribed remedy use for arthritis. In this study, Cronan and colleagues25 analyzed the roles of demographic factors, disease characteristics, disability, and difficulty with activities in the use of unprescribed remedies in a random telephone survey of 382 adults in San Diego, Calif. Of 1811 individuals contacted, 21.0% reported musculoskeletal symptoms and 84.0% of them had used at least 1 unprescribed remedy within the previous 6 months. Of demographic characteristics, only sex was related to the mean number of remedies used; in contrast, disease characteristics, including type of arthritis, severity, and disability, but not disease duration, were important determinants of the mean number of remedies used. More important, this study also demonstrated that disruptions in sleep, social activities, work, hobbies, or energy levels were all associated with use of more remedies, while disruption in family activities was not associated with the mean number of remedies used.20, 25
Although the present study varied in design and methods from the study by Cronan and colleagues,25 our results were consistent with theirs, also demonstrating the importance of arthritis-related disruptions in daily life and sleep in determining the use of self-care. Participants in the study by Cronan and colleagues were younger, more highly educated residents of 1 geographic area who were queried only about use of nonprescribed remedies within the previous 6 months; assessment of the use of formal medical care was not included. Statistical methods used in each of the 2 studies also differed, with the study by Cronan and colleagues comparing mean number of remedies used and the present study assessing factors associated with the use of each individual medical or self-care strategy. In addition, and perhaps most important, Cronan and colleagues combined areas of disability and activities affected by arthritis into 2 subscales, while the present analyses evaluated the effects of sleep and daily life disruptions individually.
The importance of sleep disturbance in the use of self-care for arthritis has not been extensively studied but might be conjectured from a study of use of alternative therapies for arthritis in 235 consecutive patients attending an academic rheumatology clinic in Montreal, Quebec.18, 22 Those patients with a diagnosis of fibromyalgia, a chronic condition characterized by widespread, diffuse pain, commonly in conjunction with notable sleep disturbance,8-9,11, 18, 29 used each of the self-care modalities more frequently than did patients with other rheumatic conditions.18 Although the researchers did not assess whether specific features or consequences of fibromyalgia were related to the use of remedies, it may be speculated that sleep disturbance might also have influenced some of the patients with fibromyalgia in this study to use additional modalities of self-care for their symptoms. This is particularly intriguing in light of our data demonstrating the importance of sleep disturbance in determining the use of self-care and medical care for arthritis in older individuals. Older patients with fibromyalgia have been described to have similar symptoms of sleep disturbance, diffuse pain, and fatigue characteristic of younger patients with the condition.30 How prevalent fibromyalgia might have been among the participants in our study is unknown.
The importance of sleep disturbance as a public health problem has been recently recognized. The World Health Organization reports that 27% of 26 000 primary care patients in 15 countries reported chronic insomnia.15 In the United States, approximately one third of the adult population has had insomnia; for about 10% of the population, insomnia may be chronic and/or serious.15 Women and older individuals are more likely to have difficulties with sleep.13-15,31 More than half of noninstitutionalized persons aged 65 years and older reported at least 1 sleep complaint in the Established Populations for Epidemiologic Studies of the Elderly.14 Sleep complaints were associated with more respiratory tract symptoms, physical disabilities, depressive symptoms, use of nonprescription medications, and poorer self-perceived health status. Although the number of chronic health conditions was increased in those older persons with sleep problems, arthritis was not 1 of the 7 chronic conditions evaluated, so its effect in this population cannot be assessed.14
IN THE PRESENT STUDY, those with self-reported arthritis-related sleep disruption were more likely than those without sleep disturbance to pursue multiple sources of self-care and medical care. Although one third of our study participants reported disruption in leisure activities as a result of arthritis, this was independently associated only with the use of biofeedback, meditation, or counseling and rest. Arthritis that caused an individual to move around less or that interfered with completion of chores was associated with the use of several modalities of care, including seeing a physician, using prescription medications, and resting. Few of our study participants reported that their arthritis caused them to be unable to visit with friends and family in their own homes. This compares with the assessment by Badley5 of disabling arthritis in Canada, where large proportions reported difficulty with leisure activities and social engagement with family and friends. Badley reported that 18% of Canadians with disabling arthritis never participated in social activities with family or friends; 15% never visited family or friends; 75% never attended sporting events, concerts, plays, or movies; and 42% never participated in arts, gardening, or hobbies. Perhaps so few of our participants reported difficulty in this arena because the question limited that difficulty to visiting friends or family in one's own home; it is likely that social disintegration from arthritis was underestimated in our cohort because of the stringent qualifications of the question, which may not be sensitive to lesser degrees of difficulty with social roles.
The results of this study have notable clinical, research, and policy implications. When considering that arthritis is the most common cause of disability in those aged 65 years and older, that sleep disturbance is present in at least half of individuals in this same age group, and that large proportions of affected individuals with each problem pursue multiple avenues of self-care, medical care, and complementary care for relief of their symptoms,2-3,13-14,16 the need for intervention in these 2 common, frequently coexistent, and interrelated conditions in aging becomes apparent. Physicians and other health care providers must be educated about the effect of sleep disturbance, which can be exacerbated by, but is sometimes independent of and wrongly attributed to, arthritis pain. Indeed, it must be conceded that in our study, we cannot know if participants' attribution of arthritis as the cause of their sleep disruption was correct. As such, we cannot determine with certainty whether the sleep disruption itself might have been the factor associated with the use of multiple self-care, complementary, and medical modalities. This is clinically important since relief of arthritis pain may be expected to improve true arthritis-related sleep disruption, but therapy of arthritis alone might not be sufficient to improve either pain or sleep disruption if sleep disruption has been incorrectly attributed to arthritis and other independent and unrecognized causes of sleep disruption coexist untreated. Indeed, physicians and health care providers must recognize that therapy of sleep disturbance may sometimes be required for improvement in pain. That is, the need for relief of sleep problems and other arthritis-related disruptions in daily life may be at least as important as the need for pain relief.
Physicians and other health care providers must also realize that they may miss opportunities for effective intervention if they fail to probe specifically about arthritis and sleep disturbance, since many patients never discuss either of these conditions with a physician.16, 32-34 Patients may not report their arthritis or sleep disturbance because of the belief that these are normal processes of aging or that no effective therapies exist.32-34 It follows, then, that patients too must be educated about the availability of effective treatments and behavioral interventions for these disorders and encouraged to report their difficulties and to pursue such treatments.
Finally, appreciation of the importance that patients ascribe to arthritis-related disruptions in sleep and daily life should prompt further research into clinical, psychosocial, and other factors associated with the decisions to pursue different areas of medical care, complementary therapies, and self-care. Further research into the importance of arthritis-related disruptions in sleep and daily life on the use of self-care, complementary care, and formal medical care is needed to replicate our results and to extend them to other populations. However, research on use of medical and self-care in arthritis would benefit from standardization of questionnaires and other methods to increase comparability among studies. Reports of the frequency of use of self-care strategies for arthritis, and determinants of those uses, vary considerably among studies, according to (1) the size and characteristics of the study sample, such as geographic location, sociodemographic composition, and clinic- or population-based origin; (2) the modalities and definitions of traditional and nontraditional care assessed and the time course of their use; and (3) statistical analytic techniques used. Finally, the results of this study challenge epidemiological, behavioral, and biomedical investigators to pursue new and better treatments aimed not only at relief of arthritis pain but also at its commonly associated sleep disturbance and disruptions in daily life.
AUTHOR INFORMATION
Accepted for publication May 4, 1999.
This study was supported by grant 5-P60-AR30701 from the National Institute of Arthritis, Musculoskeletal, and Skin Diseases, Bethesda, Md (Thurston Arthritis Research Center, The University of North Carolina at Chapel Hill); and cooperative agreement AG07929-03 from the National Institute on Aging, Bethesda (Cecil G. Sheps Health Services Research Center, The University of North Carolina at Chapel Hill).
Reprints: Joanne M. Jordan, MD, MPH, Thurston Arthritis Research Center, Departments of Medicine and Epidemiology, The University of North Carolina at Chapel Hill, 3310 Thurston Bldg, Campus Box 7330, The University of North Carolina, Chapel Hill, NC 27599-7330.
From the Departments of Medicine (Drs Jordan and Callahan), Epidemiology (Drs Jordan, Callahan, and DeFriese), Health Policy and Administration (Drs Bernard, Konrad, and DeFriese), and Social Medicine (Drs Konrad and DeFriese), the Thurston Arthritis Research Center (Drs Jordan and Callahan), the Cecil G. Sheps Center for Health Services Research (Drs Bernard, Konrad, and DeFriese), and the Program on Aging, Schools of Medicine and Nursing (Dr Kincade), The University of North Carolina at Chapel Hill.
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