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Restless legs syndrome symptomatology, attitudes and beliefs among treated and untreated individuals
Sleep Medicine 13 (2012) 1226–1231
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Sleep Medicine journal homepage: www.elsevier.com/locate/sleep
Original Article
Restless legs syndrome symptomatology, attitudes and beliefs among treated and untreated individuals Christine M. Ramsey a,⇑, Adam P. Spira a,1, Allison Carlson b,2, Christopher Earley c,3, Richard Allen c,4, Hochang Benjamin Lee d,5 a
Department of Mental Health, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, United States Department of Psychiatry and Behavioral Sciences, Johns Hopkins University School of Medicine, Baltimore, MD, United States Department of Neurology, Johns Hopkins University School of Medicine, Baltimore, MD, United States d Department of Psychiatry, Yale University, New Haven, CT, United States b c
a r t i c l e
i n f o
Article history: Received 23 January 2012 Received in revised form 18 May 2012 Accepted 24 May 2012 Available online 31 August 2012 Keywords: RLS Treatment Health services Attitude Race Andersen’s behavioral model
a b s t r a c t Background: Restless legs syndrome (RLS) is an under-diagnosed and under-treated disorder in the community. Little is known regarding the factors associated with treatment seeking for RLS. Based on Andersen’s behavioral model for health service utilization, we compared predisposing factors, enabling or impeding factors and need for care factors among participants without RLS (NRs), participants with untreated RLS (URs) and participants with treated RLS (TRs). Methods: The study sample consisted of 105 participants (NRs: n = 41; URs: n = 29; TRs: n = 35) who were evaluated face-to-face based on the Hopkins Telephone Diagnostic Interview. We compared the groups with respect to sociodemographic variables, insurance status, attitudes and beliefs toward RLS and RLS treatment, symptom severity, impact on quality of life and subjective description of RLS symptoms. Results: URs were older (72.6 years versus 61.1 years) and had a higher proportion of African Americans (44.8% versus 8.6%) (p < 0.01 for both). Compared to NRs and URs, TRs endorsed a stronger belief that RLS is a serious medical condition and causes marked psychosocial impairment (p < 0.01 for both). TRs reported greater RLS symptom severity than URs (p < 0.01), but the impact of RLS on quality on life was similar in both groups. TRs were more likely to use specific descriptors to describe symptoms of RLS than URs. Conclusions: Based on Andersen’s model, predisposing and need for care factors including Caucasian race, greater concern about the impact of RLS on daily activity and more frequent endorsement of RLS symptom descriptors were associated with receiving treatment for RLS. Further study is needed to identify barriers to treatment in individuals with undiagnosed and untreated RLS in the community. Ó 2012 Elsevier B.V. All rights reserved.
1. Introduction Restless legs syndrome (RLS) is a common, neurological sensorimotor disorder that affects 5–15% of the general adult population in Western countries [1,2]. Despite its prevalence, RLS remains an under-recognized and under-treated condition in clinical populations and in the community [3,4]. A primary care based study across six Western countries found that only 40% of those with
⇑ Corresponding author. Address: 624 N. Broadway, Rm 886, Baltimore, MD 21205, United States. Tel.: +1 610 613 6745. E-mail address: [email protected] (C.M. Ramsey). 1 624 N. Broadway, Rm 794, Baltimore, MD 21205, United States. 2 5300 Alpha Commons Drive, 4th Floor, Baltimore, MD 21224, United States. 3 5501 Hopkins Bayview Circle, Baltimore, MD 21224, United States. 4 Bayview Medical Center, Baltimore, MD 21224, United States. 5 20 York St., CB 2039, New Haven, CT 06510, United States. 1389-9457/$ - see front matter Ó 2012 Elsevier B.V. All rights reserved. http://dx.doi.org/10.1016/j.sleep.2012.05.013
RLS had previously consulted a physician for their symptoms, and of those who did, only 28% received a diagnosis [5]. Similarly, in the RLS Epidemiology, Symptoms, and Treatment (REST) general population study, only 6.2% of those with clinically significant RLS in the community had received a diagnosis of RLS from a healthcare professional [4]. The reason for under-diagnosis and under-treatment of RLS remains unclear. Often, those with clinically significant RLS symptoms do not report them to their healthcare providers. In the REST primary care study, only 64.8% of patients with clinically significant RLS had discussed their symptoms with a clinician, and only 12.9% of those who did received a diagnosis of RLS by a provider [3]. A recent study in a German primary care sample reported that only a quarter of those with symptoms meeting RLS diagnostic criteria are aware that they have RLS, and that only every fifth patient with RLS desires medication to reduce their symptoms [6]. These findings suggest that patients with RLS often do not believe
C.M. Ramsey et al. / Sleep Medicine 13 (2012) 1226–1231
their symptoms merit evaluation or treatment. However, the patient characteristics and RLS symptomatology that promote or impede treatment seeking remain unclear. Andersen’s behavioral model of health services utilization [7] could provide a useful framework in which to examine the characteristics of patients who seek treatment for RLS. Andersen’s model posits that use of health services is a function of predisposing factors, factors which enable or impede use and need for care factors [7]. When applied to treatment seeking for RLS (Fig. 1), predisposing patient characteristics consist of demographic and social factors (age, gender, education, occupation and ethnicity), and health beliefs (attitudes/beliefs regarding RLS, values and knowledge about health and health services). Enabling or impeding factors include access to healthcare facilities and personnel qualified to treat RLS, as well as income, health insurance status, having a regular source of care and travel and waiting times for health services [7]. Need for care factors are the quality and severity of RLS symptoms and their impact on quality of life. In the present study, we used Andersen’s model to examine differences in predisposing, enabling or impeding and need for care factors in individuals with no RLS, treated and untreated RLS.
2. Methods 2.1. Study sample Overall, 105 adults consented to participate. Those with untreated RLS and without RLS were recruited from the RLS in Baltimore ECA (RiBECA) Study. Details of the RiBECA Study have been described previously [8]. Briefly, RiBECA was an ancillary study to Wave IV of the Baltimore Epidemiologic Catchment Area follow-up study [9], in which 1028 community-dwelling Baltimore residents completed the RiBECA-7Q, a questionnaire with seven items mirroring the National Institutes of Health/International Restless Legs Syndrome Study Group (NIH/IRLSSG) diagnostic criteria for RLS [10]. This ancillary study was approved by the Johns Hopkins School of Medicine Institutional Review Board. Of the 1028 participants in the RiBECA Study, 41 screened positive for RLS on the RiBECA-7Q [11]. All 41 reported that they were not being treated for their RLS symptoms and were invited to participate in this follow-up study. Of the 41 participants with RLS, six could not be reached. The remaining 35 with positive RiBECA-7Q screens consented to participate. We then recruited 35 age-, gender- and race-matched participants who screened negative on the RiBECA-7Q from the RiBECA Study. Of the 35 RiBECA-7Q screen positive participants, 29 had RLS based on evaluation by an RLS expert clinician (Lee, H.B.) that included a full neurologic examination and in-person administration
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of the Hopkins Telephone Diagnostic Interview (HTDI), which assesses the four key diagnostic features of RLS and factors that provoke and relieve symptoms [12]. These participants comprised the Untreated RLS (UR: n = 29) group. The No RLS (NR: n = 41) group consisted of 35 participants who screened negative on the RiBECA-7Q and did not have RLS based on the HTDI and the six participants who screened positive but did not have RLS based on the HTDI. To form a group of individuals with RLS who were receiving treatment (TR: n = 35), we recruited patients from the Johns Hopkins Center for RLS who were prescribed medication for relief of their RLS symptoms. RLS diagnosis of these participants was confirmed by the study clinician based on the same diagnostic procedure as the other two groups. All participants had public or private transportation available and lived in or near Baltimore City, where the Johns Hopkins RLS Center is located.
2.2. Measures Predisposing sociodemographic data and medical history were obtained by self-report. Predisposing health beliefs and attitudes were measured by the RLS Attitude Scale, Trust in Physician Scale and Medical Skepticism Scale. Enabling or impeding factors assessed included access to health care facilities and access to public and private transportation and ability to pay for healthcare, as measured by self-report of health insurance coverage. Need for care factors assessed included RLS symptom severity, impact on quality of life and subjective description of RLS symptoms, and were assessed with the International RLS Study Group RLS Rating Scale, RLS Quality of Life Instrument and the RLS Symptoms Survey, respectively. Participants with treated RLS were asked to rate their symptoms based on their memory of their symptoms at a time when they were not receiving treatment.
2.2.1. RLS Attitude Scale We developed the RLS Attitude Scale by modifying 20 items with relevance to RLS and its treatment from the 31-item Diabetes Attitude Scale (DAS-3) [13]. The revised scale consisted of four subscales assessing attitudes and beliefs concerning: (1) clinicians’ need for training in diagnosis and treatment of RLS; (2) seriousness of RLS as a disorder; (3) psychosocial impact of RLS (i.e., impact on social activities, emotional wellbeing and daily function); and (4) importance of patient autonomy (i.e., patient choices in understanding and treating their condition). Higher scores on each subscale indicate stronger support for the respective attitudes and beliefs (e.g., clinicians should receive specialized training in diagnosing and treating RLS, RLS is a serious medical condition, etc.).
Fig. 1. Conceptual framework based on Andersen’s behavioral model for health service utilization.
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2.2.2. Trust in Physician Scale [14–16] All participants completed this 11-item questionnaire, which quantifies patients’ interpersonal trust in his or her physician and is significantly related to patients’ desires for control in their clinical interactions and subsequent satisfaction with care. Higher scores indicate greater trust in physicians.
2.2.7. Geriatric Depression Scale (GDS) [20,21] All participants completed the 30-item GDS to assess current level of depressive symptomatology. Higher scores on the GDS indicate a greater number of depressive symptoms.
3. Analysis 2.2.3. Medical Skepticism Scale [17] All participants completed this 4-item questionnaire included in the National Medical Expenditure Study. It measures doubts about the ability of conventional medical services to alter one’s health status. Higher scores indicate greater skepticism. 2.2.4. International RLS Study Group RLS Rating Scale (IRLSSG Rating Scale) [18] Participants with RLS (URs and TRs) completed the IRLSSG Rating Scale as a measure of RLS disease severity. This 10-item scale asks patients to rate the severity of their RLS symptoms and the impact their symptoms have on their daily life, sleep and mood. Higher scores on the IRLSSG indicate more severe symptoms of RLS. 2.2.5. RLS Quality of Life Instrument (RLS-QLI) [19] All participants with RLS (URs and TRs) completed this 17-item scale, which measures four factors (Daily Function, Social Function, Sleep Quality and Emotional Well-Being) for health-related quality of life in relation to RLS. Higher scores on the RLS-QLI indicate lower quality of life. 2.2.6. RLS Symptoms Survey [10] Participants with RLS (URs and TRs) rated how well each of twenty-one RLS symptom descriptors (e.g., ‘‘creepy-crawly’’) suggested by the RLS workshop sponsored by NIH/IRLSSG matched his or her RLS symptoms based on a 5-point Likert scale (1 = strongly disagree, 5 = strongly agree). We converted responses into a binary scale indicating agreement/disagreement with the descriptor. For each descriptor, up to six participants who provided a response of ‘‘neutral’’ were excluded from the analyses of descriptor agreement/disagreement.
We compared the three groups with respect to sociodemographic and health-related variables using Fisher’s exact tests for categorical variables and analysis of variance (ANOVA) for continuous variables. We then compared the three groups on RLS-related attitudes, trust in physicians and medical skepticism. To control Type I error, we used multivariate analyses of covariance (MANCOVAs) to examine differences in the four subscales of the RLS Attitude Scale, with age, race and education as covariates. We used separate analyses of covariance (ANCOVA) with the same covariates to compare the three groups on the Medical Skepticism Scale and Trust in Physician Scale, and to compare TRs and URs on the IRLSSG Rating Scale and the RLS-QLI. When omnibus F tests from ANOVAs, ANCOVAs or MANCOVAs were significant, we performed post hoc comparisons between the groups, using the Tukey HSD test. Finally, we compared the endorsement of multiple RLS symptom descriptors (RLS Symptoms Survey) between TRs and URs using multivariable-adjusted logistic regression analyses with treatment status as the primary predictor and endorsement of each symptom as the outcome, while adjusting for age, race and education. We selected an a < 0.05 for statistical significance. All statistical analyses were performed using Stata-11-SE (StataCorp, College Station, TX).
4. Results TRs, NRs and URs differed significantly in age, with URs older than NRs and TRs, and NRs older than TRs (p < 0.01) (Table 1). TRs completed more years of education than NRs and URs (p < 0.01). NRs reported fewer symptoms of depression on the
Table 1 Sociodemographic and health characteristics for no RLS, untreated RLS, and treated RLS.
Sociodemographic Age Education GDS score
Gender Male Female Race Caucasian African American Self-rated health Good or excellent Heart disease Diabetes Hypertension Stroke Cancer Osteoporosis Asthma Arthritis Health insurance a b
No RLS N = 41 Mean (SD)
Untreated N = 29 Mean (SD)
Treated N = 35 Mean (SD)
F (df), p-Value
69.1 (9.5) 12.0 (3.0) 5.10 (4.8)
72.6 (14.1)a 11.5 (2.6) 9.70 (7.6)a
61.1 (13.0) a,b 15.4 (2.8)a,b 7.70 (6.3)
F (2,102) = 7.76, p = 0.001 F (2,102) = 19.3, p <001 F (2,101) = 4.71, p = 0.011
N (%)
N (%)
N (%)
p-Value
10 (24.4) 31 (75.6)
3 (10.3) 26 (89.7)
11 (31.4) 24 (68.6)
23 (56.1) 18 (43.9)
16 (55.2) 13 (44.8)
32 (92.4)a,b 3 (8.6)
26 (65.0) 7 (17.5) 9 (22.5) 24 (61.5) 2 (5.1) 4 (10.0) 7 (17.5) 7 (17.5) 28 (68.3) 39 (97.5)
22 (78.6) 8 (29.6) 9 (32.1) 18 (64.3) 3 (10.7) 2 (7.7) 9 (32.1) 8 (28.6) 17 (60.7) 25 (92.6)
24 (70.6) 6 (18.8) 5 (15.6) 18 (52.9) 0 (0) 6 (17.7) 7 (21.2) 3 (8.8) 18 (52.9) 31 (93.9)
0.130
0.001
Significant (p < 0.05) pairwise difference with the No RLS group. Indicates significant (p < 0.05) pairwise difference with the untreated RLS group.
0.495 0.476 0.311 0.623 0.182 0.537 0.361 0.122 0.402 0.615
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C.M. Ramsey et al. / Sleep Medicine 13 (2012) 1226–1231 Table 2 Attitudes and beliefs toward general health services and RLS treatment among no RLS, treated RLS and untreated RLS participants.*
RLS Attitude Scale Cause of psychosocial impairment Patient autonomy in treating symptoms Seriousness as a medical condition Need for clinician training to treat symptoms Trust in physicians Medical Skepticism
No RLS N = 41 Mean (SE)
Untreated N = 29 Mean (SE)
Treated N = 36 Mean (SE)
10.8 17.3 22.8 24.5 44.7 12.9
10.4 17.2 21.9 24.5 42.6 11.7
13.2 16.5 27.2 25.1 45.4 10.2
(0.38) (0.35) (0.67) (0.43) (1.0) (0.55)
(0.45) (0.42) (0.81) (0.51) (1.2) (0.67)
(0.50)a,b (0.46) (0.91)a,b (0.58) (2.6) (0.74)a,b
F (df), p-Value F(2,97) = 8.70, F(2,97) = 0.88, F(2,96) = 9.50, F(2,96) = 0.38, F(2,98) = 11.9, F(2,98) = 4.14,
p < 0.001 p = 0.418 p < 0.001 p = 0.684 p = 0.176 p = 0.019
SE, standard error. Results are from ANCOVA; means are adjusted for age, race and education. a Significant (p < 0.05) pairwise difference with the No RLS group. b Significant (p < 0.05) pairwise difference with the untreated RLS group.
*
Table 3 Quality of life, symptom severity, and descriptors of RLS among treated and untreated participants with RLS.*
RLS Quality of Life (QoL) RLS Symptom Severity (IRLS scale)
RLS Symptoms Survey Gotta moves Fidgets Jittery Creepy-crawly Pain Tight feeling Heebie-jeebies Throbbing Crazy legs Electric current Shock like Jimmy legs Elvis legs Pulling Ants crawling Worms moving Grabbing sensation Burning Soda bubbling in veins Itching bones Tearing
Untreated N = 29 Adjusted Mean (SE)
Treated N = 35 Adjusted Mean (SE)
F(df), p-Value
61.7 (3.7) 21.0 (1.9)
50.8 (3.8) 28.6 (2.0)
F(1,56) = 3.58, p = 0.064 F(1,57) = 6.53, p = 0.013
Untreated N (%)
Treated N (%)
Total N (%)
p-Value
20 (74.1) 15 (55.6) 15 (59.3) 15 (55.6) 16 (59.3) 13 (48.1) 11 (40.7) 15 (55.6) 8 (29.6) 9 (33.3) 5 (18.5) 6 (22.2) 8 (29.6) 12 (44.4) 8 (29.6) 4 (14.8) 3 (11.1) 7 (25.9) 4 (14.8) 7 (25.9) 3 (11.1)
33 (97.1) 32 (97.0) 28 (90.3) 27 (81.8) 22 (62.9) 21 (67.7) 19 (67.9) 16 (50.0) 20 (64.4) 20 (64.5) 21 (63.6) 14 (66.7) 14 (51.9) 11 (34.4) 14 (46.7) 16 (50.0) 13 (41.9) 10 (30.3) 11 (33.3) 6 (20.0) 2 (6.9)
55 (83.3) 47 (72.3) 45 (70.3) 43 (65.2) 40 (59.7) 35 (55.6) 30 (50.0) 31 (48.4) 29 (46.0) 29 (46.0) 26 (40.0) 20 (37.7) 22 (37.3) 23 (35.9) 22 (34.9) 20 (31.3) 17 (27.0) 17 (26.2) 15 (23.1) 13 (21.0) 5 (8.2)
0.135 0.096 0.905 0.051 0.992 0.671 0.092 0.780 0.021 0.199 0.043 0.042 0.308 0.222 0.106 0.030 0.029 0.833 0.867 0.873 0.382
SE, standard error. * Means and p-values are adjusted for age, race and education; IRLS: IRLSSG RLS severity rating scale.
GDS than URs (p < 0.05) but not TRs. TRs were more likely to be Caucasian (92.4%) than URs (55.2%) and NRs (56.1%) (p < 0.01). Table 2 compares scores on measures of attitudes toward RLS and RLS treatment among NRs, URs and TRs after accounting for age, education and race as covariates. Because covarying for depression did not impact parameter estimates, depression was not retained in ANCOVAs. For all three groups, scores on the RLS Attitudes Scale supported a belief in the importance of patient autonomy in treating their RLS and in the need for physicians to receive specialized training to recognize and treat RLS. TRs’ responses on the psychosocial impairment subscale indicated that they believed more strongly than URs or NRs that RLS symptoms affect psychological well-being and social functioning (p < 0.01). TRs’ responses also indicated that they believed more strongly in the seriousness of RLS as a medical condition than did URs or NRs (p < 0.01). Attitudes and beliefs of URs and NRs did not differ on psychosocial impairment or seriousness as a medical condition
subscales. Medical skepticism scores among TRs were lower than among URs and NRs (p < 0.01). After adjustment for age, education and race, TRs reported greater symptom severity than URs on the IRLSSG RLS Rating Scale (p = 0.013) (Table 3). Regarding words used to describe RLS symptoms, ‘‘gotta moves’’, ‘‘fidgets’’, ‘‘jittery’’ and ‘‘creepy-crawly’’ were the most commonly endorsed symptoms for both URs and TRs; 92.5% of TRs and URs endorsed at least one of these common descriptors. Compared to URs, TRs were more likely to endorse several additional RLS descriptors (p < 0.05). URs were not significantly more likely to endorse any of the descriptors (Fig. 2).
5. Discussion Based on Andersen’s behavioral model of health services utilization, we found several differences in predisposing factors, enabling
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100 Untreated
80
Percent
Treated 60 40
…
…
0
…
20
Descriptors Fig. 2. Frequency of RLS descriptors endorsed by treated and untreated participants with RLS.
or impeding factors and need for care factors between those with treated RLS and untreated RLS. Consistent with previous research, race was a predisposing factor for treatment of RLS with Caucasians being far more likely to seek treatment than African Americans. The absence of African American patients with RLS in specialty clinics has been noted previously [4,22]. Given that the prevalence of RLS among African Americans and Caucasian Americans in the area surrounding the specialty clinic was similar [8], a racial disparity in health service utilization seems to exist for RLS, as it does for other medical conditions [23]. Another notable demographic difference was the age between URs and TRs; URs were approximately 12 years older than TRs. This, may be an artifact of the sample, as we identified the UR and NR participants from the aging cohort of the Baltimore ECA follow-up study, or it may suggest that symptoms of RLS severe enough to lead to treatment seeking present at a younger age. A third difference between the TRs and URs was in their beliefs about and attitudes toward RLS. TRs had stronger beliefs regarding RLS as a serious medical condition that causes significant social, emotional and functional impairment than did URs. Due to this study’s cross-sectional design, we cannot determine if the treatment of RLS influenced their attitudes and beliefs toward RLS or vice versa. Nevertheless, it is notable that TRs expressed less medical skepticism. Possibly, these findings suggest that general attitudes towards clinicians and healthcare services, as well as specific attitudes about RLS could facilitate or impede treatmentseeking behavior. This study also assessed the need for care among participants with RLS as an explanatory factor in RLS treatment seeking. As expected, we found that TRs, when asked to consider a time when they were not being treated, reported more severe RLS symptoms than URs. In addition, URs had the most depressive symptoms among the three groups. Determining whether preexisting depression is an impediment to treatment seeking or if depression is attributed to RLS and may be alleviated by treating RLS symptoms was not possible in this cross-sectional study. This study has several methodological limitations that should be addressed in the future. First, this study was limited by a small sample size, with only 29 TRs and 35 URs. Additionally, patients seeking treatment for RLS at a large academic medical center such as Johns Hopkins may not be representative of RLS treatment seekers in general. Finally, the authors created the RLS Attitudes Scale by modifying the Diabetes Attitudes Scale, but we have not yet validated this scale among individuals with RLS. On the other hand, this study benefitted from assessment of a community sample of
URs with milder, but treatable symptoms of RLS. Furthermore, this was the first study to address factors impeding treatment for RLS that are amenable to change, which serves to enhance the state of knowledge in the field and introduce further avenues of needed research. Conflicts of interest The ICMJE Uniform Disclosure Form for Potential Conflicts of Interest associated with this article can be viewed by clicking on the following link: doi:10.1016/j.sleep.2012.05.013. References [1] Berger K, Kurth T. RLS epidemiology: frequencies, risk factors and methods in population studies. Mov Disord 2007;22(Suppl. 18):S420–3. [2] Innes KE, Selfe TK, Agarwal P. Prevalence of restless legs syndrome in North American and Western European populations: a systematic review. Sleep Med 2011;12:623–34. [3] Hening W, Walters AS, Allen RP, Montplaisir J, Myers A, Ferini-Strambi L. Impact, diagnosis and treatment of restless legs syndrome (RLS) in a primary care population: the REST (RLS epidemiology, symptoms, and treatment) primary care study. Sleep Med 2004;5:237–46. [4] Allen R, Hening W, Washburn T, Early C. Racial and ethnic patterns in patients diagnosed with restless legs syndrome (RLS). Sleep 2005;28:A278. Abstract Supplement. [5] Allen RP, Stillman P, Meyers AJ. Physician-diagnosed restless legs syndrome in a large sample of primary medical care patients in Western Europe: prevalence and characteristics. Sleep Med 2010;11:31–7. [6] Happe S, Vennemann M, Evers S, Berger K. Treatment wish of individuals with known and unknown restless legs syndrome in the community. J Neurol 2008;255:1365–71. [7] Andersen RM. A behavioral model of families’ use of health services, Research series No. 25. Chicago: Center for Health Administration Studies, University of Chicago, 1968. [8] Lee HB, Hening WA, Allen RP, Earley CJ, Eaton WW, Lyketsos CG. Race and restless legs syndrome symptoms in an adult community sample in east Baltimore. Sleep Med 2006;7:642–5. [9] Eaton WW, Kalaydjian A, Scharfstein DO, Mezuk B, Ding Y. Prevalence and incidence of depressive disorder: the Baltimore ECA follow-up, 1981–2004. Acta Psychiatr Scand 2007;116:182–8. [10] Allen RP, Picchietti D, Hening WA, Trenkwalder C, Walters AS, Montplaisi J. Restless legs syndrome: diagnostic criteria, special considerations, and epidemiology. A report from the restless legs syndrome diagnosis and epidemiology workshop at the National Institutes of Health. Sleep Med 2003;4:101–19. [11] Lee H, Hening W, Ramsey C, Spira A, Allen R. Validity of Seven-item RLS Diagnostic Questionnaire (RiBECA-7Q) in the Restless Legs Syndrome in the Baltimore Epidemiologic Catchment Area (RiBECA) Study. Sleep 2009;32:A382. Abstract Supplement. [12] Hening WA, Allen RP, Washburn M, Lesage S, Earley CJ. Validation of the Hopkins Telephone Diagnostic Interview for restless legs syndrome. Sleep Med 2008;9:283–9. [13] Anderson RM, Donnelly MB, Gressard CP, Dedrick RF. Development of diabetes attitude scale for health-care professionals. Diabetes Care 1989;12:120–7.
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Original Article
Restless legs syndrome symptomatology, attitudes and beliefs among treated and untreated individuals Christine M. Ramsey a,⇑, Adam P. Spira a,1, Allison Carlson b,2, Christopher Earley c,3, Richard Allen c,4, Hochang Benjamin Lee d,5 a
Department of Mental Health, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, United States Department of Psychiatry and Behavioral Sciences, Johns Hopkins University School of Medicine, Baltimore, MD, United States Department of Neurology, Johns Hopkins University School of Medicine, Baltimore, MD, United States d Department of Psychiatry, Yale University, New Haven, CT, United States b c
a r t i c l e
i n f o
Article history: Received 23 January 2012 Received in revised form 18 May 2012 Accepted 24 May 2012 Available online 31 August 2012 Keywords: RLS Treatment Health services Attitude Race Andersen’s behavioral model
a b s t r a c t Background: Restless legs syndrome (RLS) is an under-diagnosed and under-treated disorder in the community. Little is known regarding the factors associated with treatment seeking for RLS. Based on Andersen’s behavioral model for health service utilization, we compared predisposing factors, enabling or impeding factors and need for care factors among participants without RLS (NRs), participants with untreated RLS (URs) and participants with treated RLS (TRs). Methods: The study sample consisted of 105 participants (NRs: n = 41; URs: n = 29; TRs: n = 35) who were evaluated face-to-face based on the Hopkins Telephone Diagnostic Interview. We compared the groups with respect to sociodemographic variables, insurance status, attitudes and beliefs toward RLS and RLS treatment, symptom severity, impact on quality of life and subjective description of RLS symptoms. Results: URs were older (72.6 years versus 61.1 years) and had a higher proportion of African Americans (44.8% versus 8.6%) (p < 0.01 for both). Compared to NRs and URs, TRs endorsed a stronger belief that RLS is a serious medical condition and causes marked psychosocial impairment (p < 0.01 for both). TRs reported greater RLS symptom severity than URs (p < 0.01), but the impact of RLS on quality on life was similar in both groups. TRs were more likely to use specific descriptors to describe symptoms of RLS than URs. Conclusions: Based on Andersen’s model, predisposing and need for care factors including Caucasian race, greater concern about the impact of RLS on daily activity and more frequent endorsement of RLS symptom descriptors were associated with receiving treatment for RLS. Further study is needed to identify barriers to treatment in individuals with undiagnosed and untreated RLS in the community. Ó 2012 Elsevier B.V. All rights reserved.
1. Introduction Restless legs syndrome (RLS) is a common, neurological sensorimotor disorder that affects 5–15% of the general adult population in Western countries [1,2]. Despite its prevalence, RLS remains an under-recognized and under-treated condition in clinical populations and in the community [3,4]. A primary care based study across six Western countries found that only 40% of those with
⇑ Corresponding author. Address: 624 N. Broadway, Rm 886, Baltimore, MD 21205, United States. Tel.: +1 610 613 6745. E-mail address: [email protected] (C.M. Ramsey). 1 624 N. Broadway, Rm 794, Baltimore, MD 21205, United States. 2 5300 Alpha Commons Drive, 4th Floor, Baltimore, MD 21224, United States. 3 5501 Hopkins Bayview Circle, Baltimore, MD 21224, United States. 4 Bayview Medical Center, Baltimore, MD 21224, United States. 5 20 York St., CB 2039, New Haven, CT 06510, United States. 1389-9457/$ - see front matter Ó 2012 Elsevier B.V. All rights reserved. http://dx.doi.org/10.1016/j.sleep.2012.05.013
RLS had previously consulted a physician for their symptoms, and of those who did, only 28% received a diagnosis [5]. Similarly, in the RLS Epidemiology, Symptoms, and Treatment (REST) general population study, only 6.2% of those with clinically significant RLS in the community had received a diagnosis of RLS from a healthcare professional [4]. The reason for under-diagnosis and under-treatment of RLS remains unclear. Often, those with clinically significant RLS symptoms do not report them to their healthcare providers. In the REST primary care study, only 64.8% of patients with clinically significant RLS had discussed their symptoms with a clinician, and only 12.9% of those who did received a diagnosis of RLS by a provider [3]. A recent study in a German primary care sample reported that only a quarter of those with symptoms meeting RLS diagnostic criteria are aware that they have RLS, and that only every fifth patient with RLS desires medication to reduce their symptoms [6]. These findings suggest that patients with RLS often do not believe
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their symptoms merit evaluation or treatment. However, the patient characteristics and RLS symptomatology that promote or impede treatment seeking remain unclear. Andersen’s behavioral model of health services utilization [7] could provide a useful framework in which to examine the characteristics of patients who seek treatment for RLS. Andersen’s model posits that use of health services is a function of predisposing factors, factors which enable or impede use and need for care factors [7]. When applied to treatment seeking for RLS (Fig. 1), predisposing patient characteristics consist of demographic and social factors (age, gender, education, occupation and ethnicity), and health beliefs (attitudes/beliefs regarding RLS, values and knowledge about health and health services). Enabling or impeding factors include access to healthcare facilities and personnel qualified to treat RLS, as well as income, health insurance status, having a regular source of care and travel and waiting times for health services [7]. Need for care factors are the quality and severity of RLS symptoms and their impact on quality of life. In the present study, we used Andersen’s model to examine differences in predisposing, enabling or impeding and need for care factors in individuals with no RLS, treated and untreated RLS.
2. Methods 2.1. Study sample Overall, 105 adults consented to participate. Those with untreated RLS and without RLS were recruited from the RLS in Baltimore ECA (RiBECA) Study. Details of the RiBECA Study have been described previously [8]. Briefly, RiBECA was an ancillary study to Wave IV of the Baltimore Epidemiologic Catchment Area follow-up study [9], in which 1028 community-dwelling Baltimore residents completed the RiBECA-7Q, a questionnaire with seven items mirroring the National Institutes of Health/International Restless Legs Syndrome Study Group (NIH/IRLSSG) diagnostic criteria for RLS [10]. This ancillary study was approved by the Johns Hopkins School of Medicine Institutional Review Board. Of the 1028 participants in the RiBECA Study, 41 screened positive for RLS on the RiBECA-7Q [11]. All 41 reported that they were not being treated for their RLS symptoms and were invited to participate in this follow-up study. Of the 41 participants with RLS, six could not be reached. The remaining 35 with positive RiBECA-7Q screens consented to participate. We then recruited 35 age-, gender- and race-matched participants who screened negative on the RiBECA-7Q from the RiBECA Study. Of the 35 RiBECA-7Q screen positive participants, 29 had RLS based on evaluation by an RLS expert clinician (Lee, H.B.) that included a full neurologic examination and in-person administration
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of the Hopkins Telephone Diagnostic Interview (HTDI), which assesses the four key diagnostic features of RLS and factors that provoke and relieve symptoms [12]. These participants comprised the Untreated RLS (UR: n = 29) group. The No RLS (NR: n = 41) group consisted of 35 participants who screened negative on the RiBECA-7Q and did not have RLS based on the HTDI and the six participants who screened positive but did not have RLS based on the HTDI. To form a group of individuals with RLS who were receiving treatment (TR: n = 35), we recruited patients from the Johns Hopkins Center for RLS who were prescribed medication for relief of their RLS symptoms. RLS diagnosis of these participants was confirmed by the study clinician based on the same diagnostic procedure as the other two groups. All participants had public or private transportation available and lived in or near Baltimore City, where the Johns Hopkins RLS Center is located.
2.2. Measures Predisposing sociodemographic data and medical history were obtained by self-report. Predisposing health beliefs and attitudes were measured by the RLS Attitude Scale, Trust in Physician Scale and Medical Skepticism Scale. Enabling or impeding factors assessed included access to health care facilities and access to public and private transportation and ability to pay for healthcare, as measured by self-report of health insurance coverage. Need for care factors assessed included RLS symptom severity, impact on quality of life and subjective description of RLS symptoms, and were assessed with the International RLS Study Group RLS Rating Scale, RLS Quality of Life Instrument and the RLS Symptoms Survey, respectively. Participants with treated RLS were asked to rate their symptoms based on their memory of their symptoms at a time when they were not receiving treatment.
2.2.1. RLS Attitude Scale We developed the RLS Attitude Scale by modifying 20 items with relevance to RLS and its treatment from the 31-item Diabetes Attitude Scale (DAS-3) [13]. The revised scale consisted of four subscales assessing attitudes and beliefs concerning: (1) clinicians’ need for training in diagnosis and treatment of RLS; (2) seriousness of RLS as a disorder; (3) psychosocial impact of RLS (i.e., impact on social activities, emotional wellbeing and daily function); and (4) importance of patient autonomy (i.e., patient choices in understanding and treating their condition). Higher scores on each subscale indicate stronger support for the respective attitudes and beliefs (e.g., clinicians should receive specialized training in diagnosing and treating RLS, RLS is a serious medical condition, etc.).
Fig. 1. Conceptual framework based on Andersen’s behavioral model for health service utilization.
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2.2.2. Trust in Physician Scale [14–16] All participants completed this 11-item questionnaire, which quantifies patients’ interpersonal trust in his or her physician and is significantly related to patients’ desires for control in their clinical interactions and subsequent satisfaction with care. Higher scores indicate greater trust in physicians.
2.2.7. Geriatric Depression Scale (GDS) [20,21] All participants completed the 30-item GDS to assess current level of depressive symptomatology. Higher scores on the GDS indicate a greater number of depressive symptoms.
3. Analysis 2.2.3. Medical Skepticism Scale [17] All participants completed this 4-item questionnaire included in the National Medical Expenditure Study. It measures doubts about the ability of conventional medical services to alter one’s health status. Higher scores indicate greater skepticism. 2.2.4. International RLS Study Group RLS Rating Scale (IRLSSG Rating Scale) [18] Participants with RLS (URs and TRs) completed the IRLSSG Rating Scale as a measure of RLS disease severity. This 10-item scale asks patients to rate the severity of their RLS symptoms and the impact their symptoms have on their daily life, sleep and mood. Higher scores on the IRLSSG indicate more severe symptoms of RLS. 2.2.5. RLS Quality of Life Instrument (RLS-QLI) [19] All participants with RLS (URs and TRs) completed this 17-item scale, which measures four factors (Daily Function, Social Function, Sleep Quality and Emotional Well-Being) for health-related quality of life in relation to RLS. Higher scores on the RLS-QLI indicate lower quality of life. 2.2.6. RLS Symptoms Survey [10] Participants with RLS (URs and TRs) rated how well each of twenty-one RLS symptom descriptors (e.g., ‘‘creepy-crawly’’) suggested by the RLS workshop sponsored by NIH/IRLSSG matched his or her RLS symptoms based on a 5-point Likert scale (1 = strongly disagree, 5 = strongly agree). We converted responses into a binary scale indicating agreement/disagreement with the descriptor. For each descriptor, up to six participants who provided a response of ‘‘neutral’’ were excluded from the analyses of descriptor agreement/disagreement.
We compared the three groups with respect to sociodemographic and health-related variables using Fisher’s exact tests for categorical variables and analysis of variance (ANOVA) for continuous variables. We then compared the three groups on RLS-related attitudes, trust in physicians and medical skepticism. To control Type I error, we used multivariate analyses of covariance (MANCOVAs) to examine differences in the four subscales of the RLS Attitude Scale, with age, race and education as covariates. We used separate analyses of covariance (ANCOVA) with the same covariates to compare the three groups on the Medical Skepticism Scale and Trust in Physician Scale, and to compare TRs and URs on the IRLSSG Rating Scale and the RLS-QLI. When omnibus F tests from ANOVAs, ANCOVAs or MANCOVAs were significant, we performed post hoc comparisons between the groups, using the Tukey HSD test. Finally, we compared the endorsement of multiple RLS symptom descriptors (RLS Symptoms Survey) between TRs and URs using multivariable-adjusted logistic regression analyses with treatment status as the primary predictor and endorsement of each symptom as the outcome, while adjusting for age, race and education. We selected an a < 0.05 for statistical significance. All statistical analyses were performed using Stata-11-SE (StataCorp, College Station, TX).
4. Results TRs, NRs and URs differed significantly in age, with URs older than NRs and TRs, and NRs older than TRs (p < 0.01) (Table 1). TRs completed more years of education than NRs and URs (p < 0.01). NRs reported fewer symptoms of depression on the
Table 1 Sociodemographic and health characteristics for no RLS, untreated RLS, and treated RLS.
Sociodemographic Age Education GDS score
Gender Male Female Race Caucasian African American Self-rated health Good or excellent Heart disease Diabetes Hypertension Stroke Cancer Osteoporosis Asthma Arthritis Health insurance a b
No RLS N = 41 Mean (SD)
Untreated N = 29 Mean (SD)
Treated N = 35 Mean (SD)
F (df), p-Value
69.1 (9.5) 12.0 (3.0) 5.10 (4.8)
72.6 (14.1)a 11.5 (2.6) 9.70 (7.6)a
61.1 (13.0) a,b 15.4 (2.8)a,b 7.70 (6.3)
F (2,102) = 7.76, p = 0.001 F (2,102) = 19.3, p <001 F (2,101) = 4.71, p = 0.011
N (%)
N (%)
N (%)
p-Value
10 (24.4) 31 (75.6)
3 (10.3) 26 (89.7)
11 (31.4) 24 (68.6)
23 (56.1) 18 (43.9)
16 (55.2) 13 (44.8)
32 (92.4)a,b 3 (8.6)
26 (65.0) 7 (17.5) 9 (22.5) 24 (61.5) 2 (5.1) 4 (10.0) 7 (17.5) 7 (17.5) 28 (68.3) 39 (97.5)
22 (78.6) 8 (29.6) 9 (32.1) 18 (64.3) 3 (10.7) 2 (7.7) 9 (32.1) 8 (28.6) 17 (60.7) 25 (92.6)
24 (70.6) 6 (18.8) 5 (15.6) 18 (52.9) 0 (0) 6 (17.7) 7 (21.2) 3 (8.8) 18 (52.9) 31 (93.9)
0.130
0.001
Significant (p < 0.05) pairwise difference with the No RLS group. Indicates significant (p < 0.05) pairwise difference with the untreated RLS group.
0.495 0.476 0.311 0.623 0.182 0.537 0.361 0.122 0.402 0.615
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C.M. Ramsey et al. / Sleep Medicine 13 (2012) 1226–1231 Table 2 Attitudes and beliefs toward general health services and RLS treatment among no RLS, treated RLS and untreated RLS participants.*
RLS Attitude Scale Cause of psychosocial impairment Patient autonomy in treating symptoms Seriousness as a medical condition Need for clinician training to treat symptoms Trust in physicians Medical Skepticism
No RLS N = 41 Mean (SE)
Untreated N = 29 Mean (SE)
Treated N = 36 Mean (SE)
10.8 17.3 22.8 24.5 44.7 12.9
10.4 17.2 21.9 24.5 42.6 11.7
13.2 16.5 27.2 25.1 45.4 10.2
(0.38) (0.35) (0.67) (0.43) (1.0) (0.55)
(0.45) (0.42) (0.81) (0.51) (1.2) (0.67)
(0.50)a,b (0.46) (0.91)a,b (0.58) (2.6) (0.74)a,b
F (df), p-Value F(2,97) = 8.70, F(2,97) = 0.88, F(2,96) = 9.50, F(2,96) = 0.38, F(2,98) = 11.9, F(2,98) = 4.14,
p < 0.001 p = 0.418 p < 0.001 p = 0.684 p = 0.176 p = 0.019
SE, standard error. Results are from ANCOVA; means are adjusted for age, race and education. a Significant (p < 0.05) pairwise difference with the No RLS group. b Significant (p < 0.05) pairwise difference with the untreated RLS group.
*
Table 3 Quality of life, symptom severity, and descriptors of RLS among treated and untreated participants with RLS.*
RLS Quality of Life (QoL) RLS Symptom Severity (IRLS scale)
RLS Symptoms Survey Gotta moves Fidgets Jittery Creepy-crawly Pain Tight feeling Heebie-jeebies Throbbing Crazy legs Electric current Shock like Jimmy legs Elvis legs Pulling Ants crawling Worms moving Grabbing sensation Burning Soda bubbling in veins Itching bones Tearing
Untreated N = 29 Adjusted Mean (SE)
Treated N = 35 Adjusted Mean (SE)
F(df), p-Value
61.7 (3.7) 21.0 (1.9)
50.8 (3.8) 28.6 (2.0)
F(1,56) = 3.58, p = 0.064 F(1,57) = 6.53, p = 0.013
Untreated N (%)
Treated N (%)
Total N (%)
p-Value
20 (74.1) 15 (55.6) 15 (59.3) 15 (55.6) 16 (59.3) 13 (48.1) 11 (40.7) 15 (55.6) 8 (29.6) 9 (33.3) 5 (18.5) 6 (22.2) 8 (29.6) 12 (44.4) 8 (29.6) 4 (14.8) 3 (11.1) 7 (25.9) 4 (14.8) 7 (25.9) 3 (11.1)
33 (97.1) 32 (97.0) 28 (90.3) 27 (81.8) 22 (62.9) 21 (67.7) 19 (67.9) 16 (50.0) 20 (64.4) 20 (64.5) 21 (63.6) 14 (66.7) 14 (51.9) 11 (34.4) 14 (46.7) 16 (50.0) 13 (41.9) 10 (30.3) 11 (33.3) 6 (20.0) 2 (6.9)
55 (83.3) 47 (72.3) 45 (70.3) 43 (65.2) 40 (59.7) 35 (55.6) 30 (50.0) 31 (48.4) 29 (46.0) 29 (46.0) 26 (40.0) 20 (37.7) 22 (37.3) 23 (35.9) 22 (34.9) 20 (31.3) 17 (27.0) 17 (26.2) 15 (23.1) 13 (21.0) 5 (8.2)
0.135 0.096 0.905 0.051 0.992 0.671 0.092 0.780 0.021 0.199 0.043 0.042 0.308 0.222 0.106 0.030 0.029 0.833 0.867 0.873 0.382
SE, standard error. * Means and p-values are adjusted for age, race and education; IRLS: IRLSSG RLS severity rating scale.
GDS than URs (p < 0.05) but not TRs. TRs were more likely to be Caucasian (92.4%) than URs (55.2%) and NRs (56.1%) (p < 0.01). Table 2 compares scores on measures of attitudes toward RLS and RLS treatment among NRs, URs and TRs after accounting for age, education and race as covariates. Because covarying for depression did not impact parameter estimates, depression was not retained in ANCOVAs. For all three groups, scores on the RLS Attitudes Scale supported a belief in the importance of patient autonomy in treating their RLS and in the need for physicians to receive specialized training to recognize and treat RLS. TRs’ responses on the psychosocial impairment subscale indicated that they believed more strongly than URs or NRs that RLS symptoms affect psychological well-being and social functioning (p < 0.01). TRs’ responses also indicated that they believed more strongly in the seriousness of RLS as a medical condition than did URs or NRs (p < 0.01). Attitudes and beliefs of URs and NRs did not differ on psychosocial impairment or seriousness as a medical condition
subscales. Medical skepticism scores among TRs were lower than among URs and NRs (p < 0.01). After adjustment for age, education and race, TRs reported greater symptom severity than URs on the IRLSSG RLS Rating Scale (p = 0.013) (Table 3). Regarding words used to describe RLS symptoms, ‘‘gotta moves’’, ‘‘fidgets’’, ‘‘jittery’’ and ‘‘creepy-crawly’’ were the most commonly endorsed symptoms for both URs and TRs; 92.5% of TRs and URs endorsed at least one of these common descriptors. Compared to URs, TRs were more likely to endorse several additional RLS descriptors (p < 0.05). URs were not significantly more likely to endorse any of the descriptors (Fig. 2).
5. Discussion Based on Andersen’s behavioral model of health services utilization, we found several differences in predisposing factors, enabling
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100 Untreated
80
Percent
Treated 60 40
…
…
0
…
20
Descriptors Fig. 2. Frequency of RLS descriptors endorsed by treated and untreated participants with RLS.
or impeding factors and need for care factors between those with treated RLS and untreated RLS. Consistent with previous research, race was a predisposing factor for treatment of RLS with Caucasians being far more likely to seek treatment than African Americans. The absence of African American patients with RLS in specialty clinics has been noted previously [4,22]. Given that the prevalence of RLS among African Americans and Caucasian Americans in the area surrounding the specialty clinic was similar [8], a racial disparity in health service utilization seems to exist for RLS, as it does for other medical conditions [23]. Another notable demographic difference was the age between URs and TRs; URs were approximately 12 years older than TRs. This, may be an artifact of the sample, as we identified the UR and NR participants from the aging cohort of the Baltimore ECA follow-up study, or it may suggest that symptoms of RLS severe enough to lead to treatment seeking present at a younger age. A third difference between the TRs and URs was in their beliefs about and attitudes toward RLS. TRs had stronger beliefs regarding RLS as a serious medical condition that causes significant social, emotional and functional impairment than did URs. Due to this study’s cross-sectional design, we cannot determine if the treatment of RLS influenced their attitudes and beliefs toward RLS or vice versa. Nevertheless, it is notable that TRs expressed less medical skepticism. Possibly, these findings suggest that general attitudes towards clinicians and healthcare services, as well as specific attitudes about RLS could facilitate or impede treatmentseeking behavior. This study also assessed the need for care among participants with RLS as an explanatory factor in RLS treatment seeking. As expected, we found that TRs, when asked to consider a time when they were not being treated, reported more severe RLS symptoms than URs. In addition, URs had the most depressive symptoms among the three groups. Determining whether preexisting depression is an impediment to treatment seeking or if depression is attributed to RLS and may be alleviated by treating RLS symptoms was not possible in this cross-sectional study. This study has several methodological limitations that should be addressed in the future. First, this study was limited by a small sample size, with only 29 TRs and 35 URs. Additionally, patients seeking treatment for RLS at a large academic medical center such as Johns Hopkins may not be representative of RLS treatment seekers in general. Finally, the authors created the RLS Attitudes Scale by modifying the Diabetes Attitudes Scale, but we have not yet validated this scale among individuals with RLS. On the other hand, this study benefitted from assessment of a community sample of
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