Vol. 31 No. 1 January 2006

Journal of Pain and Symptom Management

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Original Article

Symptom Assessment in Community-Dwelling Older Adults with Advanced Chronic Disease Lisa M. Walke, MD, Amy L. Byers, PhD, Ruth McCorkle, PhD, RN, FAAN, and Terri R. Fried, MD Department of Internal Medicine (L.M.W., T.R.F.), Yale University School of Medicine, New Haven, Connecticut; Department of Geriatric Psychiatry (A.L.B.), Weill Medical College of Cornell University, White Plains, New York; Center for Excellence in Chronic Illness Care (R.M.), Yale University School of Nursing, New Haven, Connecticut; and Clinical Epidemiology Research Center (T.R.F.), VA Connecticut Healthcare System, West Haven, Connecticut, USA

Abstract Brief symptom instruments are designed to assess symptoms while maintaining low respondent burden, but they may omit important information. Our objective was to determine whether a representative brief symptom instrument effectively captures the full symptom experience of older adults with advanced diseases. In this cross-sectional study, we interviewed 90 community-dwelling adults with cancer, congestive heart failure, or chronic obstructive pulmonary disease regarding the presence of symptoms in the prior 24 hours. Participants rated the intensity and bothersome nature of 15 symptomsd10 symptoms were included in the Edmonton Symptom Assessment Scale (ESAS) plus 5 supplemental symptoms. Participants reported similar proportions of ESAS and supplemental symptoms. Intensity and ‘‘bothersomeness’’ ratings frequently differed. Brief symptom instruments only provide a limited assessment of the respondent’s symptom experience. The benefit obtained from incorporating both the intensity and bothersome nature of a longer list of symptoms may outweigh the potential increase in respondent burden. J Pain Symptom Manage 2006;31:31--37. Ó 2006 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved. Key Words Symptom assessment, community-dwelling adults, chronic disease

Introduction Portions of this manuscript were presented at the American Geriatrics Society National Convention in Washington, DC in May, 2002. Dr. Byers was formerly affiliated with the Yale Program on Aging, New Haven, Connecticut. Address reprint requests to: Lisa M. Walke, MD, Yale University School of Medicine, 20 York Street, TMP B15, New Haven, CT 06504, USA. E-mail: [email protected]. Accepted for publication: May 27, 2005. Ó 2006 U.S. Cancer Pain Relief Committee Published by Elsevier Inc. All rights reserved.

Increasingly, the assessment of symptomatic patients is shifting from an assessment of individual symptoms to an evaluation of total symptom burden.1 Rigorous and reliable measurement techniques are required to accomplish this task, but these techniques may need to be adjusted for vulnerable populations, such as older adults with advanced chronic disease. The challenge for clinicians and clinical researchers in examining symptoms in older adults with advanced disease is to thoroughly assess the symptoms relevant to their particular 0885-3924/06/$--see front matter doi:10.1016/j.jpainsymman.2005.05.014

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population without unduly burdening respondents by the inquiry process. Several instruments have been developed to assess multiple symptoms in persons with advanced disease. Some instruments include queries on the presence of and distress caused by 30 or more symptoms.2,3 Although these instruments provide a comprehensive assessment of symptoms, their length may present a challenge to seriously ill persons. Instruments that assess the intensity of 10--15 symptoms4,5 have been used in several studies conducted among seriously ill persons,6--8 in part because of their brevity. However, the efficiency of a brief instrument may come at the expense of information regarding important symptoms or symptom characteristics. One important characteristic that may be excluded is the bothersome nature of symptoms. Prior investigators have demonstrated a discrepancy between various symptom characteristics including intensity, the degree of bother or distress related to symptoms, and the importance of symptoms.9--11 This discrepancy suggests that symptom intensity ratings alone do not provide a full assessment of the experience of symptoms. Because the effective treatment of symptoms relies heavily on the information obtained during symptom assessment, we sought to determine whether a representative brief symptom instrument assessed the full range of symptoms that were pertinent to a population of community-dwelling older adults with advanced chronic disease and whether the assessment of symptom intensity adequately described symptom bothersomeness.

Methods Participants Participants were community-dwelling persons 60 years or older with a primary diagnosis of one of three chronic diseases: cancer, congestive heart failure (CHF), or chronic obstructive pulmonary disease (COPD). Participants enrolled in the current study were part of a larger longitudinal investigation of the attitudes and preferences of older seriously ill adults. Participants were selected according to objective criteria for advanced disease defined by the Connecticut Hospice12 or used in the Study to

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Understand Prognoses and Preferences for Outcomes and Risks of Treatment.13 The eligibility criteria, recruitment procedure, and prevalence of symptoms for the total 226 participants in the larger investigation have been described previously.14 Participants were recruited from Veterans Affairs (VA) and nonVA clinical sites. Additional questions, as described below, were developed after the initiation of the larger investigation. Therefore, the 90 participants in our study represent only the proportion of the 226 participants enrolled in the larger investigation who were interviewed after the development of the additional questions. Compared with the participants in the larger investigation, the participants in this study were less likely to have a diagnosis of cancer (21% vs. 44%, P ¼ 0.002). There were no differences in age, race, gender, marital status, or site of recruitment between the participants in this study and the larger investigation. The human investigations committee of each hospital approved the study protocol. All participants provided written informed consent.

Measures We used the Edmonton Symptom Assessment Scale (ESAS),4 a validated instrument for the assessment of symptoms in seriously ill persons,15 as a representative brief symptom assessment instrument. Participants rated the intensity of the 10 symptoms on the ESASd limited activity, fatigue, physical discomfort, shortness of breath, pain, lack of well-being, problems with appetite, feelings of depression, anxiety, and nauseadduring an in-home interview. As done by prior investigators, we modified the original visual analog scale to a 4-point scale (not present, mild, moderate, severe), thereby allowing participants to provide verbal rather than written responses.16 We solicited verbal responses because a substantial percentage of older participants in a prior study were unable to complete a visual analog scale,17 and verbal symptom measurements have been shown to correlate well with visual analog scale measurements.18,19 We supplemented the ESAS with five additional symptoms: difficulty sleeping, weakness, dizziness, difficulty thinking, and constipation. We chose to include these symptoms because they had been used in other scales2,3,5 and they were judged to be pertinent symptoms for an

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Symptom Assessment in Seriously Ill Adults

older population by a group of geriatricians. The additional symptoms were rated on the same 4-point scale used for the ESAS symptoms. To ensure we obtained information on all the symptoms experienced by participants, we also included an open-ended question that asked participants to name any additional symptoms. The ESAS prompts respondents to rate the intensity of their symptoms in the prior 24 hours. Therefore, we asked our participants to rate the intensity of all 15 symptoms during the prior 24 hours. For each symptom reported as mild, moderate, or severe, we then asked our participants to rate how bothersome the symptom was on a similar 4-point scale (not bothersome, mildly bothersome, moderately bothersome, severely bothersome). Participants also provided information regarding their age, race, and educational background.

Exploratory Analyses We examined participant characteristics, prevalence of symptoms, and prevalence of bothersomeness using descriptive statistics. A symptom was defined as present by an intensity rating of at least mild. Each symptom present was defined as bothersome if it was rated as at least mildly bothersome. As a description of the agreement between intensity and bothersomeness ratings, we calculated the proportion of respondents whose bothersomeness rating agreed with, was greater than, and was less than the intensity rating for each symptom.

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well-being, and problems with appetite were experienced by the majority (>50%) of participants. Smaller proportions of participants experienced feelings of depression (36%), anxiety (32%), and nausea (13%). The proportion of participants who reported each symptom is presented in descending order of frequency in Table 1.

Prevalence of Additional Symptoms The proportion of participants reporting the five additional symptomsddifficulty sleeping, weakness, dizziness, difficulty thinking, and constipationdfell within the range of the proportion of participants reporting the 10 symptoms included in the ESAS. Approximately 40% of the participants reported difficulty sleeping or weakness, 20% reported dizziness or difficulty thinking, and 10% reported experiencing constipation (Table 1). Participants reported a total of 14 other symptoms in response to the open-ended question. Two of these symptoms, numbness and diarrhea, were each reported by approximately 5% of the participants. An additional two symptoms, vision changes and sensitive skin, were each reported by approximately 2% of the participants. The remaining 10 symptomsdhand or foot swelling, urinary frequency, incontinence, hot flashes, cough, facial burning, reflux, peeling skin, word-finding difficulties, and somnolencedwere each reported by 1% of the participants. Table 1 Prevalence of Symptoms and Bothersomeness

Results Symptom

Participants reporting symptom n/N (%)

Participants reporting symptom as bothersome n/N (%)

Limited activity Fatigue Physical discomfort Shortness of breath Pain Lack of well-being Problems with appetite Difficulty sleeping Weakness Feelings of depression Anxiety Dizziness Difficulty thinking Constipation Nausea

78/90 73/90 70/90 64/90 51/90 47/90 46/90 38/90 35/90 32/90 29/90 20/90 19/90 12/90 12/90

57/78 55/73 62/70 58/64 48/51 33/47 15/46 34/38 32/35 27/32 20/29 13/20 18/19 12/12 11/12

Participant Characteristics Of the 90 participants, 42% had a diagnosis of COPD, 37% had a diagnosis of CHF, and 21% had a cancer diagnosis. Participants had a mean (
SD) age of 73
7 years and a mean (
SD) of 11
3 years of education. Approximately half of the participants were women (47%) and the majority were Caucasians (93%).

Prevalence of ESAS Symptoms The proportion of participants who experienced ESAS symptoms ranged from 13% to 87%. Limited activity, fatigue, physical discomfort, shortness of breath, pain, lack of

(87) (81) (78) (71) (57) (52) (51) (42) (39) (36) (32) (22) (21) (13) (13)

(73) (75) (89) (91) (94) (70) (33) (90) (91) (84) (69) (65) (95) (100) (92)

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Although the proportion of participants who experienced the symptoms of difficulty thinking, constipation, and nausea was low, almost all of the participants who experienced these symptoms (92%--100%) considered them to be bothersome (Table 1). Symptoms with higher prevalence rates were likewise rated as bothersome by a high proportion of participants. Virtually all of the participants ($90%) who reported shortness of breath, pain, difficulty sleeping, or weakness also reported the symptom to be bothersome. For the remainder of the symptoms, except problems with appetite, between 65% and 89% of those reporting the symptom also reported it to be bothersome. Only one-third of the participants reporting problems with appetite considered this symptom to be bothersome.

the symptoms lack of well-being, difficulty thinking, constipation, and nausea, the proportion of participants who provided intensity ratings that were higher than the bothersomeness ratings was approximately equal to the proportion of participants who provided bothersomeness ratings that were higher than the intensity ratings. The intensity and bothersomeness ratings for fatigue are presented in Fig. 1 as a more detailed illustration of the differences between intensity and bothersomeness ratings. The diagonal line represents complete agreement between the intensity and bothersomeness ratings for fatigue. Approximately 45% of participants rated the intensity of fatigue one level higher or lower than its bothersomeness. An additional 14% of participants rated the intensity of fatigue two levels higher or lower than its bothersomeness.

Symptom Intensity and Symptom Bothersomeness Ratings

Discussion

As shown in Table 2, intensity and bothersomeness ratings frequently differed. For a number of symptoms, the proportion of participants rating the intensity of the symptom as higher than its bothersomeness was greater than the proportion rating bothersomeness as higher than intensity. These symptoms were limited activity, fatigue, physical discomfort, shortness of breath, pain, problems with appetite, difficulty sleeping, weakness, feelings of depression, anxiety, and dizziness. However, this was not the trend for all symptoms. For

Among older, community-dwelling adults with advanced chronic disease who were assessed using an augmented representative brief symptom instrument (the ESAS), reports of additional symptoms were as frequent as reports of ESAS symptoms. Our results also demonstrated that symptom intensity and bothersomeness ratings frequently differed. In this investigation, the 10 ESAS symptoms and the 5 additional symptoms were each reported by more than 10% of the participants. No additional symptoms emerged from

Prevalence of Bothersome Symptoms

Table 2 Comparison of Intensity and Bothersomeness Ratings Among Symptomatic Participants

Symptom Limited activity (n ¼ 78) Fatigue (n ¼ 73) Physical discomfort (n ¼ 70) Shortness of breath (n ¼ 64) Pain (n ¼ 51) Lack of well-being (n ¼ 47) Problems with appetite (n ¼ 46) Difficulty sleeping (n ¼ 38) Weakness (n ¼ 35) Feelings of depression (n ¼ 32) Anxiety (n ¼ 29) Dizziness (n ¼ 20) Difficulty thinking (n ¼ 19) Constipation (n ¼ 12) Nausea (n ¼ 12)

Intensity rating ¼ Bothersomeness rating, n (%) 26 20 50 37 37 19 5 26 23 18 16 10 12 9 6

(33) (27) (71) (58) (73) (40) (11) (68) (66) (56) (55) (50) (63) (75) (50)

Intensity rating > Bothersomeness rating, n (%) 38 41 16 20 10 17 39 10 8 11 11 8 4 2 4

(49) (56) (23) (31) (20) (36) (85) (26) (23) (34) (38) (40) (21) (17) (33)

Bothersomeness rating > Intensity rating, n (%) 14 12 4 7 4 11 2 2 4 3 2 2 3 1 2

(18) (16) (6) (11) (8) (23) (4) (5) (11) (9) (7) (10) (16) (8) (17)

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Symptom Assessment in Seriously Ill Adults

Intensity of Fatigue

Severe

n=4

n=6

Moderate

n = 14

n = 12

Mild

n=5

n=6

n=2

n=9

35

n=5

n=7

n=3

n = 17 None None

Mildly

Moderately

Severely

Bothersome nature of Fatigue

Fig. 1. Fatigue intensity vs. bothersomeness ratings (N ¼ 90).

a substantial number of participants by inclusion of the ‘‘other’’ category, thereby suggesting that the 15 symptoms included in our investigation represent the symptoms with substantial frequency in community-dwelling older adults with three of the most common chronic diseases, namely, cancer, CHF, and COPD. The results of prior studies, in which more than 30 symptoms were examined among various populations with advanced chronic disease, suggest that additional symptoms might have been reported if explicitly assessed.20--22 Altogether, the participants in these studies reported 12 symptoms that were not reported by our participants. Several of these symptoms (lack of energy, feeling worried, poor physical function, unpleasant taste, vomiting) are closely related to symptoms reported by our participants (e.g., fatigue, anxiety, limited activity, problems with appetite, nausea). However, there were seven symptoms reported by more than 10% of the chronically ill persons in these investigations that were distinct from the symptoms reported by our participants (dry mouth, feeling bloated, weight loss, itchiness, difficulty swallowing, feeling irritable, lack of sexual interest). There are two possible explanations for the difference in the symptoms reported in our investigation compared with these prior investigations. First, these studies explicitly asked about a large number of symptoms, suggesting that a larger proportion of our patients may have endorsed the symptoms that arose in

the ‘‘other’’ category if these symptoms had been named for all participants. Second, the patients with cancer, CHF, or COPD in our investigation may not be representative of all symptomatic patients with a broader variety of chronic diseases. However, our understanding that the experience of symptoms is shared among chronic diseases is supported by our prior investigation, in which the proportion of participants with cancer, CHF, or COPD who experienced symptoms such as pain, fatigue, and feelings of depression did not significantly differ.14 Our finding that symptom intensity ratings frequently differed from symptom bothersomeness ratings extends the observations of prior symptom studies. Initially, investigators delineated the relationship between the intensity and bothersomeness of symptoms.23 Subsequently, several studies conducted with cancer patients found that participants occasionally reported distress from symptoms they had rated as low in intensity.9,11,20 We expanded the investigation of the relationship between symptom intensity and symptom bothersomeness by demonstrating the differences between these measures among participants with CHF and COPD, as well as cancer, and for a range of symptoms. Our approach to symptom assessment is supported by current symptom theory and has relevance for symptom evaluation guidelines. Symptom theory emphasizes both the multidimensional nature of symptoms and the

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corresponding need to use a multidimensional approach to symptom assessment regardless of the symptoms, patient population, or disease process being investigated.24,25 Symptom theory also proposes that investigators’ ability to comprehend various symptom characteristics is central to the overall understanding and management of symptoms. Some symptom evaluation guidelines advocate assessing for symptom-related distress regardless of symptom intensity level,26 while other guidelines only advocate for the comprehensive evaluation of symptoms rated as moderate or severe.27 In our investigation even symptoms of mild intensity were rated as severely bothersome. Thus, symptom evaluation strategies that limit their focus to moderate or severe symptoms may result in an exclusion of symptoms that are highly bothersome to patients. Clinicians and clinical researchers interested in assessing symptoms in older adults with advanced chronic disease are faced with the challenge of selecting an instrument that incorporates pertinent symptoms, but is still brief enough to maintain low respondent burden. Our results imply that instruments that assess 10 or fewer symptoms are likely to exclude some significant symptoms. Instruments that include 30 or more symptoms provide a comprehensive assessment but they may significantly burden seriously ill older adults. For this population, assessing more than 10 symptoms, but fewer than 30 symptoms, may achieve the desirable balance between obtaining important information and maintaining low respondent burden. Some of the symptoms included in different instruments and reported by more than 10% of chronically ill persons in this and prior investigations are closely related (e.g., lack of energy and fatigue, feeling worried and anxiety, poor physical function and limited activity). As such, the incorporation of only one of each of these closely related symptoms into an instrument would likely provide a sufficient assessment of symptoms. Further, if one defines symptoms as the words used by patients to describe the physical or mental manifestations of their illness, then some of the ‘‘symptoms’’ included in current instruments do not meet this definition. Categories such as poor physical function, limited activity, and lack of well-being may be better conceptualized as reflecting

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the effects of multiple symptoms, and other factors, on higher order activities. Therefore, if redundant symptoms and these higher order concepts were excluded and the seven symptoms missed in our investigation were added, an instrument would only need to incorporate 22 items to assess the symptoms reported by more than 10% of seriously ill older adults. In addition, despite the importance of maintaining low respondent burden, brief symptom instruments need to include queries regarding both the intensity and bothersome nature of symptoms to better capture respondents’ subjective symptom experience. Our investigation is limited by the homogeneity of our participants. We sampled a racially homogenous population of older adults in the Northeast. Although the participants in our investigation are typical of the older population in Connecticut,28 they may not be representative of all older adults. Thus, the results of our investigation may not be generalizable to more racially diverse populations or populations in other parts of the country. In summary, brief instruments are appealing for symptom assessment in seriously ill older adults due to their low respondent burden. However, information that may guide symptom alleviation strategies, such as the bothersome nature of symptoms, may be excluded. If the use of an expanded instrument results in the greater amelioration of symptoms experienced by community-dwelling older adults with advanced chronic disease, then the benefit obtained by incorporating larger numbers of symptoms and multiple symptom characteristics will outweigh any additional burdens.

Acknowledgments The authors thank Carm Joncas, RN and Barbara Mendes, RN for conducting interviews; John O’Leary, MA for data management; Cathy Shufro, Heather Allore, PhD, and Peter Van Ness, PhD for reviewing an earlier version of the manuscript; and all the individuals who participated in this study. The work for this report was funded in part by grants R01 AG19769 and T32 AG 019134 from the National Institute on Aging, the John A. Hartford/American Federation for Aging Research, the Veterans Affairs HSR&D service, the Claude D. Pepper Older Americans

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Symptom Assessment in Seriously Ill Adults

Independence Center at Yale (P30 AG212342), and the Paul Beeson Physician Faculty Scholar in Aging Research program. Dr. Fried is the recipient of a Midcareer Investigator Award in Patient-Oriented Research (K02 AG20113) from the National Institute on Aging.

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