Only 50 years ago, patients diagnosed

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1 The Multidimensional Characteristics of Symptoms Reported by Patients on Hemodialysis Continuing Nursing Education Anita Jablonski Only 50 years ago, patients diagnosed with irreversible renal disease faced certain death. Since that time, scientific innovations have resulted in effective treatment for individuals who have lost kidney function. The development of renal replacement therapies (RRT), including dialysis and transplantation, has made it possible to prolong the lives of patients with chronic kidney disease after they progress to end stage renal disease (ESRD). Hemodialysis (HD) is the treatment of choice for the majority of patients with ESRD. Approximately 90% of incident patients begin treatment with HD (United States Renal Data System [USRDS], 2006). Ninety-two percent of prevalent patients on dialysis opt for this mode of therapy. Hemodialysis extends the lives of countless patients, over 300,000 as of 2004 (USRDS, 2006). Although HD is a life saving therapy, it is not without unpleasant side effects. The underlying disease process and the presence of additional comorbid conditions further add to the number and variety of symptoms Anita Jablonski, PhD, RN, is Assistant Professor, Seattle University College of Nursing, Seattle, Washington. This paper reports the results of her dissertation, conducted as a doctoral student at Michigan State University, East Lansing, Michigan. She is a member of ANNA s Greater Puget Sound Chapter. Funding sources Funding for this project was provided by through the following sources: National Institutes of Health, National Institute of Nursing Research. National Research Service Award Grant No 1 F31 NR ; American Nephrology Nurses Association/Sigma Theta Tau International; Sigma Theta Tau; Alpha Psi Chapter, Michigan State University; and Sigma Theta Tau; Kappa Epsilon Chapter, Grand Valley State University. Note: The author reported no actual or potential conflict of interest in relation to this continuing nursing education article. Contemporary theoretical models conceptualize symptoms as multidimensional, interactive phenomena. This research examined the symptoms experienced by patients on hemodialysis within this paradigm. The intensity (severity), timing (frequency and duration), distress (bother), and concurrence (co-occurring symptoms) associated with symptoms were explored. A multidimensional profile constructed for each of the symptoms demonstrated that those rated as the most severe were not necessarily the most frequently occurring, longest lasting, or most distressing to patients. Symptoms also occurred in groups. Patients reported individual symptoms as increasingly troublesome and quality of life progressively lower as they experienced more of the symptoms in a grouping. These findings suggest the need to view patients symptom experiences more broadly. Symptom assessment should include the full complement of symptoms patients experience and move beyond the current practice of assessment of severity alone to include all symptom dimensions. Goal To increase awareness of the benefits of assessing all the symptoms that patients have rather than focusing on only select symptoms. Objectives 1. Discuss the benefits of assessing multidimensional symptoms in the clinical setting. 2. Describe methods that can be used to assess multidimensional symptoms in patients. 3. Summarize the needs determined in a study of multidimensional symptom assessments. experienced by patients on HD. These symptoms adversely affect the quality of life (QOL) of both the patients who experience them and the families who share their lives (Killingworth & Van Den Akker, 1996; Merkus, Jager, Dekker, de Haan, & Boeschoten, 1999). A primary outcome of care for patients treated with HD is their achievement of a satisfactory QOL despite the presence of a chronic, life altering illness. Nurses play an instrumental role in helping patients realize this goal through their symptom management efforts. Key to the success of these efforts is an in-depth knowledge of the symptoms that patients on HD endure on a daily basis. Contemporary theoretical models of symptoms emphasize their multidimensional, interactive characteristics This offering for 1.5 contact hours is being provided by the American Nephrology Nurses Association (ANNA). ANNA is accredited as a provider of continuing nursing education (CNE) by the American Nurses Credentialing Center s Commission on Accreditation. ANNA is a provider approved by the California Board of Registered Nursing, provider number CEP The Nephrology Nursing Certification Commission (NNCC) requires 60 contact hours for each recertification period for all nephrology nurses. Forty-five of these 60 hours must be specific to nephrology nursing practice. This CNE article may be applied to the 45 required contact hours in nephrology nursing. NEPHROLOGY NURSING JOURNAL January-February 2007 Vol. 34, No. 1 29

2 The Multidimensional Characteristics of Symptoms Reported by Patients on Hemodialysis (Dodd, Miaskowski, & Paul, 2001; Lenz, Pugh, Milligan, Gift, & Suppe, 1997; McDaniel & Rhodes, 1995; Rhodes & Watson, 1987). Although research has documented the symptoms that are most common among patients on HD, the focus has been on the presence/absence of symptoms and their associated severity and/or frequency. Few studies have examined additional dimensions such as duration and distress. No studies were found that investigated the effect of multiple, coexisting symptoms on the overall symptom experience. The result is an incomplete understanding of the symptoms that frequently occur in the HD population. This gap in knowledge has implications for the care of patients on HD. Knowledge of more than one symptom dimension has been shown to provide additional information about the impact of symptoms on QOL (Portenoy et al., 1994). Theorists have suggested that interventions that effectively manage isolated symptoms may not be successful when multiple symptoms are present (Lenz et al., 1997). Knowledge of the multidimensional, interactive characteristics of symptoms is particularly relevant when caring for patients on HD who typically experience a multitude of symptoms concurrently that have the potential to adversely affect their QOL. Theoretical Framework The Theory of Unpleasant Symptoms (TOUS) provided the theoretical foundation for this study. The TOUS has three major components: the symptoms, the factors that influence or give rise to the symptoms, and the consequences of the symptom experience in relation to performance (Lenz et al., 1997). The symptom component of the TOUS was the focus of this study. Symptoms are phenomena that signal a change in normal functioning and are perceived by the patient as potential threats to health (Hegyvary, 1993; Lenz et al., 1997). Symptoms are further defined by the dimensions of intensity (severity), timing (duration and frequency of occurrence), and distress (degree of discomfort or bother) (Lenz et al., 1997). Intensity, timing, and distress describe the experience of individual symptoms. Concurrence is also included as a dimension of symptom experience in this study. Concurrence describes the coexistence and interaction of multiple symptoms. Although symptoms can occur in isolation, more often, two or more symptoms occur simultaneously (Lenz et al., 1997). Lenz and colleagues (1997) have suggested that the perception of a single symptom differs from the perception of the same symptom when it occurs in combination with others. Although concurrence was not labeled as a separate dimension in the TOUS, doing so in this study emphasizes the importance of the interaction of multiple symptoms in shaping the overall symptom experience. Analysis of all symptom dimensions is required for a thorough understanding of the nature of symptoms. Symptoms A number of studies have identified the symptoms that are commonly experienced by patients on HD. Fatigue is often the most prevalent symptom reported (Barrett, Vavasour, Major, & Parfrey, 1990; Curtin, Bultman, Thomas-Hawkins, Walters, & Schatell, 2002; McCann & Boore, 2000; Merkus et al., 1999; Weisbord et al., 2005). Other symptoms that have been found to occur with regularity include: itching, headache, sleep disturbance, cramps, pain (joint, chest, abdominal), shortness of breath, nausea/vomiting, and muscle weakness (Parfrey, Vavasour, Henry, Bullock, & Gault, 1988; Weisbord et al., 2005). Although researchers have identified the individual symptoms associated with ESRD and HD, they have not focused equally on all symptom dimensions. McCann and Boore (2000) measured only the severity of symptoms in their study of fatigue in patients on HD. Tiredness was reported as the most severe symptom among the 39 patients interviewed. This finding was also reported by Parfrey and colleagues (1987) in an earlier study that included a larger sample of 107 patients on HD. Tiredness was rated the most severe symptom, followed by cramps, headaches, itching, and sleep disturbances in descending order. Killingworth and Van Den Akker (1996) also described only one symptom dimension, frequency of occurrence. Greater than 20% of the 170 patients in their study experienced tiredness, itching, sleeping problems, and muscle weakness on most days. In a recent study, Weisbord and colleagues (2005) measured the symptoms experienced by 162 patients on HD using an instrument they developed in an earlier study, the Dialysis Symptom Index (DSI). The authors state that the DSI measures the severity of symptoms (Weisbord et al., 2004). In reality, it measures the level of distress associated with the symptoms. Sixty-nine percent of the participants experienced tiredness that they perceived as quite a bit bothersome. Chest pain, bone/joint pain, vomiting, and difficulties with sexual arousal were among the most bothersome symptoms reported by patients in this study. No other symptom dimensions were examined. Multiple dimensions of symptoms were intentionally assessed in only one study found in the literature. Parfrey et al. (1988) expanded a physical symptom scale developed in an earlier study to incorporate a number of clinical features of symptoms, among them severity, duration, and frequency of occurrence. For example, 65% of 97 participants reported that fatigue occurred every day. Of those who experienced fatigue, 69% indicated that it lasted for greater than 6 hours. Itching was reported to be a daily event for 70% of the patients, with a reported duration of over an hour for most of them (80%). These expanded descriptions of symptoms generate a more thorough understanding of the total experience. 30 NEPHROLOGY NURSING JOURNAL January-February 2007 Vol. 34, No. 1

3 Distress and concurrence were not assessed in this study. Although concurrence has not been intentionally explored in studies of patients on HD, this dimension was indirectly examined by McCann and Boore (2000). Patients in their sample reported an average of seven symptoms. There were significant positive correlations found between fatigue severity scores and both the number and severity of additional symptoms. This observation suggests a relationship among concurrent symptoms but the nature of the interaction is not evident from these findings. Much is yet to be learned about the symptoms experienced by patients on HD. Although specific symptoms typically associated with ESRD and its treatment have been documented, their multidimensional characteristics have not. The aim of this descriptive study was to explore the characteristics of the symptoms experienced by this patient population, including their intensity, timing, distress, and concurrence. Quality of life was also assessed to demonstrate the impact of the experience of multiple symptoms on patients lives. Methods Research Setting and Sample The study was conducted in two in-center dialysis clinics (Clinic A and Clinic B) located in the Midwest United States. At the time of data collection, the two units provided HD for approximately 281 patients. Participants recruited for the study had to be at least 21 years of age, alert and oriented, able to understand and speak English, and competent to give informed consent. Because they were interviewed during their dialysis sessions, patients had to be hemodynamically stable at the start of the treatment and remain so throughout the interview. Nurses supervising the dialysis treatments monitored vital signs at least every hour and more often as necessary. The convenience sample consist- Table 1 Demographic Characteristics of Patients by Clinic and Total Sample Characteristic ed of 130 patients, representing 46% of the total number of patients treated in the dialysis clinics combined. Patients ranged in age from 22 to 88 years, with a mean of years (SD = 15.62). Males (51%) and females (49%) were equally represented. White, non Hispanic patients comprised 69% of the sample, Black patients 27%, and other racial groups (i.e., American Indian and Hispanic) 4%. See Table 1 for additional demographic characteristics of the sample as well as for each clinic individually. The participants from Clinic A and Clinic B differed primarily in regard Clinic A (n = 83) Clinic B (n = 47) Total n (%) n (%) n (%) Gender Female 42 (51) 21 (45) 63 (49) Male 41 (49) 26 (55) 67 (51) Race White 70 (84) 20 (43) 90 (69) Black 10 (12) 25 (53) 35 (27) Other 3 (4) 2 (4) 5 (4) Marital status Married 47 (57) 21 (45) 68 (52) Single, never married 6 (7) 9 (19) 15 (12) Divorced/separated 18 (22) 13 (28) 31 (24) Widowed 12 (14) 4 (8) 16 (12) Employment status Employed full/part time 11 (13) 2 (4) 13 (10) Retired 26 (31) 10 (21) 36 (28) Disabled 43 (52) 29 (62) 72 (55) Not employed - reason unrelated to health 3 (4) 6 (13) 9 (7) Level of education Less than high school 22 (27) 14 (30) 27 (28) High school diploma 26 (31) 16 (34) 42 (32) Some college/vocational school 28 (34) 16 (34) 44 (34) College degree 6 (7) 1 (2) 7 (5) Professional/graduate degree 1 (1) 0 1 (1) Length of time on dialysis in months M (SD) (29.37) (42.23) (34.90) to race, reflecting the demographics of their respective clinics. No significant differences were noted between the participants from each clinic relative to other demographics including: age, gender, marital status, level of education, employment status, and length of time on dialysis. During initial data collection at Clinic A, it became apparent that the demographics of the sample reflected the HD population in the geographic area with respect to gender but not race. The racial mix of patients receiving HD in this region of the United States was approximately NEPHROLOGY NURSING JOURNAL January-February 2007 Vol. 34, No. 1 31

4 The Multidimensional Characteristics of Symptoms Reported by Patients on Hemodialysis evenly distributed between Black (48%) and White (50%) around the time of the study (Renal Network of the Upper Midwest, Inc., 2001). A second dialysis clinic (Clinic B) serving a higher percentage of Black patients was added as a data collection site to achieve a more representative racial balance. Measures Symptoms. The literature was reviewed for an appropriate multidimensional, disease specific instrument to assess symptoms. It became necessary to create a symptom measure because none were found that met the requirements of this study. The tool was designed to measure the intensity (severity), timing (frequency and duration), and distress (bother) associated with 11 physical symptoms including tiredness, itching, headaches, problems sleeping, joint pain, cramps, shortness of breath, chest pain, nausea/vomiting, abdominal pain, and weakness. An other category was included for reporting symptoms experienced, but not among those listed. The symptoms selected for the instrument are among those commonly reported by patients treated with HD. These 11 symptoms were also included on the health questionnaire developed by Parfrey and colleagues (1988; 1989) who identified symptoms typical of this patient population through patient interviews, literature review, and expert opinion. Participants were asked to rate each symptom dimension using a 5-point numeric rating scale; namely, intensity/severity (1 = not at all severe to 5 = very severe), frequency (1 = not often to 5 = every day), duration (1 = not long to 5 = all day), and distress (1 = a little to 5 = very severely distressing). An aggregate score was calculated for each symptom by summing ratings on each of the symptom dimensions. The aggregate symptom score was 0 if the patient did not report the symptom and ranged from 4 to 20 if the patient did report the symptom. The scoring method allowed for an assessment of the individual dimensions. It also provided an indicator of the overall experience of each symptom as shaped by all of the dimensions. Higher total symptom scores were indicative of a more oppressive global perception of the symptom. Scoring of the instrument in this manner is consistent with the only other multidimensional symptom assessment measure found in the literature, the Memorial Symptom Assessment Scale (MSAS). The MSAS is a well known and frequently used measure developed for use with patients who have cancer (Portenoy et al., 1994). Like the instrument created for this study, the MSAS yields scores for each dimension as well as a total score for each symptom that is the mean of the ratings for each dimension assessed. Content validity of the symptom tool was established through review of the literature and expert opinion. The instrument was also evaluated for problems with administration (e.g., difficulty understanding items, excessive length) following the first 10 participant interviews. No revision of the measure was required following this evaluation. A Cronbach s alpha was computed to assess internal consistency reliability of the instrument and found to be.67. Test-retest reliability was also examined during the course of the study. Approximately every fifth participant enrolled (n = 24) completed the tool on two occasions one week apart on the same day of the week. This time interval was chosen because of the transient nature of some symptoms and to avoid recall bias. The total symptom scores for the two administrations were highly correlated (r =.78, p <.001). The total number of symptoms reported the first time was also highly correlated with the number reported on the second administration (r =.71, p <.01). Quality of life. QOL was measured using the Ferrans and Powers (1985) Quality of Life Index (QLI) - Dialysis Version. The QLI is a two part, self-report questionnaire that assesses both satisfaction with various aspects of life and the importance of each aspect of life to the person (Ferrans & Powers, 1985). Each part is composed of a total of 32 items that evaluate the following four domains: health and functioning, psychological/spiritual, social and economic, and family. The hemodialysis version includes two additional items related to dialysis treatment. Participants respond to statements using a 6-point numeric rating scale ranging from very dissatisfied to very satisfied for the satisfaction items and from very unimportant to very important for the importance items. The tool yields a total score as well as four subscale scores corresponding to the domains of life assessed. Potential scores for both the subscales and total score range from 0-30, with higher scores indicative of higher QOL. Content and construct validity as well as reliability of the QLI have been established (Ferrans & Powers, 1985; 1990; 1992). Internal consistency reliability of the QLI was assessed for this study. The Cronbach s alpha for the entire QLI was.93. Cronbach s alphas were also computed for the subscales with the following results: health and functioning.87, psychological/spiritual.91, social and economic.75, and family.61. Human Subjects Considerations The study was approved by the University Committee for Research Involving Human Subjects (UCRIHS) at Michigan State University as well as the review boards of both dialysis clinics. Characteristics of participants and non-participants could not be compared because the Health Insurance Portability and Accountability Act of 1996 (HIPAA) enacted in April 2003 prevented access to private information regarding patients who were not included in the study (U.S. Department of Health and Human Services [USDHHS], 2005). Additional precautions were taken to protect participants confidentiality during the course of the study. All information obtained from the patients and their medical records was identified by respondent number only. No names appeared on any of the questionnaires completed by patients. 32 NEPHROLOGY NURSING JOURNAL January-February 2007 Vol. 34, No. 1

5 Table 2 Prevalence of Symptoms Reported by Patients on Hemodialysis Symptom n % Tiredness Problems sleeping Cramps Muscle weakness Joint pain Itching Shortness of breath Nausea / vomiting Headaches Abdominal pain Chest pain Others* Numbness / tingling in hands, feet Restless legs Changes in taste / smell Decreased appetite Other pain Note. *Symptoms reported in the other category of the symptom tool by 10 or more patients Data Collection Procedures Because the investigator was not allowed to approach patients without written consent, staff nurses in both clinics obtained pre-consent from patients. Once pre-consent was obtained, each patient was approached individually, introduced to the study, and asked to participate if he/she met the inclusion criteria. Written informed consent was requested of those who agreed to participate after the study was explained. Patients were interviewed immediately after obtaining informed consent. All questionnaires were administered via interview, requiring an average of 45 minutes to complete. Results Symptoms Patients reported an average of 5.67 symptoms. Tiredness, the most prevalent symptom, was experienced by 77% of the sample. Following close behind were problems sleeping, which were reported by 63% of the patients. Least commonly occurring was chest pain. In addition to those listed, two symptoms frequently reported in the other category were numbness/tingling in the hands and feet (49%) and restless legs (22%). See Table 2 for the prevalence of all 11 symptoms assessed in addition to others not listed but reported. The average total symptom score was (SD = 2.57), rated on a 0-20 scale. Muscle weakness received the highest total symptom score (M = 16.26, SD = 3.88). Scores for joint pain, problems sleeping, and tiredness followed in descending order. The lowest score was for nausea/vomiting (M =11.49, SD = 3.52). See Table 3 for the total symptom score for all symptoms assessed. Characteristics of Symptom Dimensions Intensity. The typical symptom was rated as moderate to severe (M = 3.63, SD = 0.68). Symptoms that related to various forms of pain (i.e., cramps, itching, joint pain) and energy (i.e., problems sleeping) were rated as the most severe. Severity of these symptoms ranged from a mean of 3.83 (SD = 0.89) to 4.12 (SD = 1.00) (i.e., moderate to severe). Timing. Muscle weakness was rated as the most frequently occurring symptom (M = 4.30, SD = 1.30) as well as the longest lasting (M = 4.30, SD = 1.33). Muscle weakness was present on most days and persisted for most of the day. The frequency and duration of pain related symptoms (i.e., itching, joint and abdominal pain) and symptoms related to energy/vitality (i.e., tiredness, problems sleeping) were ranked as most frequently occurring and longest lasting following muscle weakness. Frequency ratings for these symptoms ranged from an average of 3.38 (SD = 1.66) to 4.13 (SD = 1.35), occurring as often as every other day to most days. When these symptoms occurred, they lasted from half of the day to most of the day. Distress. Pain and energy/vitality related symptoms were rated as the most distressing to patients. Muscle weakness was ranked the highest on this dimension (M = 4.03, SD = 1.23) followed in descending order by chest pain, joint pain, cramps, and problems sleeping. Ratings for severity, timing (frequency and duration), and distress associated with each symptom are presented in Table 3. Concurrence. Examination of the dimension of concurrence revealed that symptoms occurred in groups. Patients reported individual symptoms as increasingly troublesome and QOL progressively lower as they experienced more of the symptoms in a grouping. This analysis of symptom concurrence was accomplished through exploratory factor analysis. Appropriate use of factor analysis was determined with tests of sampling adequacy and multivariate normality. A value of.70 was obtained for the Kaiser-Mayer-Olkin (KMO) Measure of Sampling Adequacy. This value fell above the middling range as well as the.5 minimum acceptable for factorability NEPHROLOGY NURSING JOURNAL January-February 2007 Vol. 34, No. 1 33

6 The Multidimensional Characteristics of Symptoms Reported by Patients on Hemodialysis Symptom Table 3 Average Symptom Scores and Symptom Dimension Ratings Each Symptom Total Symptom Score* M (SD) Average Severity** M (SD) Average Frequency** M (SD) Note. Possible range of scores: *0-20, ** 1-5. In all cases, higher scores indicate higher levels of the variable. Superscripts 1-5 indicate symptom ranking in each dimension. Average Duration** M (SD) Average Distress** M (SD) Muscle weakness (3.88) 3.61 (1.04) 4.30 (1.30) (1.33) (1.23) 1 Joint pain (3.48) 3.83 (0.89) (1.35) (1.50) (1.27) 3 Problems sleeping (3.28) 4.02 (1.07) (1.22) (0.85) (1.51) 5 Tiredness (3.34) 3.49 (0.88) 4.01 (1.06) 3.76 (1.37) (1.37) Abdominal pain (4.26) 3.94 (1.06) (1.78) 3.06 (1.92) (1.92) Itching (3.90) 3.91 (1.15) (1.66) (1.65) 3.70 (1.32) Headaches (3.47) 3.62 (1.02) 2.33 (1.08) 2.77 (1.71) 3.54 (1.21) Short of breath (3.99) 3.28 (1.20) 2.98 (1.58) 2.26 (1.53) 3.65 (1.45) Cramps (3.10) 4.12 (1.00) (1.07) 1.66 (1.19).79 (1.37) 4 Chest pain (3.79) 3.35 (1.00).88 (1.32) 2.35 (1.73) 3.94 (1.30) 2 Nausea / vomiting (3.52) 3.59 (1.18) 2.71 (1.31) 1.76 (1.11) 3.44 (1.38) (George & Mallery, 2003). Bartlett s Test of Sphericity was , p <.00, indicating that the data were approximately multivariate normal and did not produce an identity matrix (George & Mallery, 2003). Principal components factor analysis with varimax rotation was used to extract the factors. This method of analysis was chosen because component and common factor models usually lead to almost identical inferences (Nunnally & Bernstein, 1994). Nunnally and Bernstein (1994) also suggest that a component approach be used with exploratory factor analysis in order to guarantee a solution. They also state that orthogonal and oblique rotation methods usually result in the same major groupings and that orthogonal solutions are preferred in exploratory factor analysis. Cluster analysis has been suggested as another method of identifying groupings (Miller, Nail, Rosenfeld, & Perrin, 2004). However, factor analysis was the procedure used because groupings of symptoms rather than cases were the focus of this research. The 11 total symptom scores were used in the analysis. Three criteria were used to determine number of factors: the Kaiser-Guttman rule, the scree plot, and theoretical soundness (Nunnally & Bernstein, 1994). Examination of the scree plot suggested the extraction of two factors. Four components emerged with eigenvalues greater than 1.0, suggesting a four factor solution according to the Kaiser-Guttmann criterion. After examination of the symptoms that loaded on each factor, a four factor solution was retained on theoretical grounds. The loadings of the symptoms on the four factors are shown in Table 4. Based on sample sizes of 100 to 200, factor loadings of.384 to.512 are the suggested minimum (Stevens, 2002). In this sample of 130, factor loadings ranged from.42 to.81. Three items loaded on Factor 1. Tiredness, sleeping problems, and muscle weakness were all related to energy/vitality. Factor 2 included chest pain and shortness of breath, symptoms typically associated with cardiac related problems. A pain/ comfort theme was apparent among the symptoms comprising Factor 3 (i.e., joint pain, headache, and itching). Nausea/vomiting and abdominal pain loaded on Factor 4, both of which accompany problems related to the gastrointestinal system. Cramps (abdominal and muscle) loaded nearly equally on Factor 2 (shortness of breath and chest pain) and Factor 4 (nausea/vomiting and abdominal pain). Cramps were retained on Factor 4 for theoretical reasons. Analysis of each factor was done to further examine the dimension of concurrence. Results of this analysis for Factor 1 (tiredness, muscle weakness, and problems sleeping) are presented as an example (see Table 5). Total symptom and QOL scores reported by patients with one, two, and three symptoms in the grouping were compared. Individual symptom scores increased as numbers of symptoms in the grouping increased. The total symptom score for muscle weakness increased from to QOL scores decreased with each additional symptom in the grouping reported, dropping from to Discussion Prior to this investigation, exploration of the symptoms experienced 34 NEPHROLOGY NURSING JOURNAL January-February 2007 Vol. 34, No. 1

7 Table 4 Results of Principal Components Factor Analysis with Varimax Rotation Including Factor Loadings Symptom Factor Tiredness Sleeping problems Muscle weakness Shortness of breath Chest pain Joint pain Headaches Itching Abdominal pain Nausea/vomiting Cramps Table 5 Total Symptom Scores and Quality of Life Scores with Increasing Numbers of Symptoms Reported in the Energy/Vitality Factor 1 symptom n = 15 Symptom Score 2 symptoms n = 17 3 symptoms n = 40 Energy/Vitality Tiredness Muscle weakness Problems sleeping Quality of life Note: Symptom scores range from Quality of life scores range from by patients on HD was limited to their prevalence and a limited number of symptom dimensions, primarily severity. The intent of this study was to augment current understanding of the multidimensional nature of the symptoms reported by this patient population. Awareness of the complicated nature of symptoms is a vital prerequisite to their effective management. The symptom experience of patients in this study was complex. Data indicated the presence of a relatively high number and variety of symptoms. Of the 11 physical symptoms assessed, patients recounted an average of five. Upon further questioning, patients reported an assortment of additional symptoms involving several body systems. Among them were changes in taste, smell, and vision (sensory); anorexia, thirst, and constipation (gastrointestinal); and numbness/burning in hands/feet and restless legs (neurological). The prevalence of symptoms in this sample mirrored that reported in the literature. Tiredness, problems sleeping, cramps, muscle weakness, and numbness in the hands/feet were the top five symptoms experienced by patients in this study. Although rankings varied slightly, the majority of studies also reported these symptoms among the most commonly occurring (Curtin et al., 2002; Killingworth & Van Den Akker, 1996; McCann & Boore, 2000; Merkus et al., 1999; Weisbord et al., 2005). Nausea/vomiting, chest pain, abdominal pain, and headaches, while less prevalent, were still reported by a fair number of patients in this and previous studies (Merkus et al., 1999; Parfrey et al., 1988). The presence of an array of additional symptoms, such as those noted in this study, has been documented in the literature as well, providing further evidence that multiple, co-existing symptoms are a common occurrence in the lives of patients on HD (Curtin et al., 2002; Weisbord et al., 2005). A thorough investigation of the symptoms experienced by these patients, however, requires more than knowledge of their prevalence. In this study, analysis of symptoms extended beyond prevalence to an examination of their characteristics as well. A multidimensional profile was constructed for each of the 11 physical symptoms including its intensity (severity), timing (frequency and duration), and associated distress (bother). A total score was also calculated for each symptom by summing the ratings given on each of these four dimensions. There are advantages to assessing both the patient s global perception of a symptom and the individual symptom dimensions. Total symptom scores provide an estimate of the burden of each symptom individually and relative to other symptoms. Examination of the separate dimensions provides information about individual symptoms over and above the summary scores that may help prioritize interventions. In this study, for example, joint pain and NEPHROLOGY NURSING JOURNAL January-February 2007 Vol. 34, No. 1 35

8 The Multidimensional Characteristics of Symptoms Reported by Patients on Hemodialysis problems sleeping received nearly identical mean total symptom scores, and respectively. If assessment is limited only to severity, as is typical of current practice, the nurse may choose to deal with the symptom that is rated as the most severe first, problems sleeping. Examination of the remaining symptom dimensions, however, revealed that joint pain not only occurred more often but was more distressing to patients. This observation may alter the nurse s plan of care, with interventions to manage the joint pain taking priority over problems sleeping. Finally, the analysis of symptoms reported by patients in this study was completed with an examination of the dimension of concurrence. Interest in this dimension has gained momentum in recent years (Dodd et al., 2001; Gift, Stommel, Jablonski, & Given, 2003). Research investigating symptom concurrence is still in its infancy despite this emergent attention. This study represents the first attempt to explore this dimension in the HD population. Some investigators have hypothesized that concurrent symptoms interact to alter the perception of individual symptoms (Dodd et al., 2001; Lenz et al., 1997). The four factors identified in this study support this hypothesis, with individual symptom scores increasing as numbers of symptoms in the factor increased. Patients who reported tiredness found it most troublesome when muscle weakness and problems sleeping were also present. All of the factors followed this pattern. This relationship has been documented in previous studies with patients who have cancer. In a study of newly diagnosed elderly lung cancer patients, Gift and colleagues (2004) reported a strong positive correlation between number of symptoms in a grouping and severity of symptoms. This finding is of significance to clinical practice. It may be necessary to focus interventions on groups of symptoms rather than isolated symptoms to achieve the most effective symptom relief. Implications for Future Research Although it advances knowledge of the multidimensional characteristics of symptoms experienced by patients on HD, this study represents only a beginning. The current findings suggest that multidimensional symptom assessment may provide information that has the potential to enhance nurses symptom management efforts. Further research is needed to validate this assumption. A necessary prerequisite to additional research is the availability of symptom tools that tap multiple dimensions. Symptom measures that are efficient, concise, and acceptable for use in both the clinical setting and research endeavors are needed to advance knowledge in this area. Although the tool used to measure symptoms in this study performed well, further refinement and validation of its use in multiple samples of patients on HD are suggested. The findings of this study also require validation in additional populations of patients on HD as well as during the period between dialysis treatments. All participant interviews were conducted on treatment days during dialysis sessions. Although consistent with previous research, this design may introduce a bias toward reporting symptoms that occur at one point in time. Fluctuations in the intensity, timing, and distress associated with symptoms on off-dialysis days may not be captured as a consequence. Patients in this study were asked to report symptoms in relation to the past month to moderate the impact of this variation in status. However, recall for past events has been shown to be inaccurate and biased (Stone, Shiffman, Schwartz, Broderick, & Hufford, 2002). There may also be a tendency for patients to focus on symptoms that are present at the moment because they overshadow experiences of the recent past. Additional empirical exploration of the concept of concurrence is also warranted to further delineate its significance for clinical practice. This includes examination of the consistency with which symptom groupings occur in multiple samples of patients, the interaction of symptoms that occur together, and the impact of symptom groupings on patient outcomes. Refinement and standardization of the statistical methods used to analyze symptom concurrence are also needed to enhance comparison of findings across studies and patient populations. Implications for Nursing Practice Although more research is needed to validate the benefits of multidimensional symptom assessment in the clinical setting, selected general conclusions have application. Routine symptom assessment is often limited to pain, focusing exclusively on its perceived severity. The findings of this study suggest the need for nurses to view patients symptom experience more broadly. The patients who participated in this study reported a variety of concurrent symptoms. Multidimensional profiles demonstrated that the symptoms rated as the most severe were not necessarily the most frequently occurring, longest lasting, or most distressing to patients. Unless asked directly, patients who live with multiple symptoms on a daily basis may not even consider reporting those they think nothing can be done to alleviate. This study demonstrates a need to assess the full complement of symptoms that patients experience, not only the most severe. At a minimum, it is essential to focus on symptoms that seem to be the most troublesome to patients treated with HD. Routine assessment and management of symptoms related to energy/vitality (i.e., tiredness, problems sleeping, muscle weakness), in addition to pain, may greatly enhance the QOL of patients on HD. 36 NEPHROLOGY NURSING JOURNAL January-February 2007 Vol. 34, No. 1

9 References Barrett, B., Vavasour, H., Major, A., & Parfrey, P. (1990). Clinical and psychological correlates of somatic symptoms in patients on dialysis. Nephron, 55, Curtin, R.B., Bultman, D C., Thomas- Hawkins, C., Walters, B., & Schatell, D. (2002). Hemodialysis patients symptom experiences: Effects on Physical and Mental Functioning. Nephrology Nursing Journal, 29, Dodd, M.J., Miaskowski, C., & Paul, S. (2001). Symptom clusters and their effect on the functional status of patients with cancer. Oncology Nursing Forum, 28, Ferrans, C.E. (1990). Development of the Quality of Life Index for patients with cancer. Oncology Nursing Forum, 17(Suppl. 3), 15-19, Ferrans, C.E., & Powers, M.J. (1992). Psychometric assessment of the Quality of Life Index. Research in Nursing and Health, 15, Ferrans, C.E., & Powers, M.J. (1985). Quality of Life Index: Development and psychometric properties. Advances in Nursing Science, 8, George, D., & Mallery, P. (2003). SPSS for windows step by step 11.0 update (4th ed.). New York: Allyn and Bacon. Gift, A., Jablonski, A., Stommel, M., & Given, C.W. (2004). Symptom clusters in elderly patients with lung cancer. Oncology Nursing Forum, 31, Gift, A., Stommel, M., Jablonski, A., & Given, C.W. (2003). A cluster of symptoms over time in patients with lung cancer. Nursing Research, 52, Hegyvary, S.T. (1993). Patient care outcomes related to management of symptoms. Annual Review of Nursing Research, 11, Killingworth, A., & Van Den Akker, O. (1996). The quality of life of renal dialysis patients: Trying to find the missing measurement. International Journal of Nursing Studies, 33, Lenz, E.R., Pugh, L.C., Milligan, R.A., Gift, A., & Suppe, F. (1997). The middle-range Theory of Unpleasant Symptoms: An update. Advances in Nursing Science, 19(3), McCann, K., & Boore, J. (2000). Fatigue in persons with renal failure who require maintenance haemodialysis. Journal of Advanced Nursing, 32, McDaniel, R.W., & Rhodes, V.A. (1995). Symptom experience. Seminars in Oncology Nursing, 11, Merkus, M., Jager, K., Dekker, F., de Haan, R., & Boeschoten, E. (1999). Physical symptoms and quality of life in patients on chronic dialysis: Results of the Netherlands Cooperative Study on Adequacy of Dialysis (NECOSAD). Nephrology Dialysis Transplantation, 14, Miller, L., Nail, L., Rosenfeld, A., & Perrin, N. (2004, April). Symptom cluster research. Symposium at the meeting of the Western Institute of Nursing 37th Annual Communicating Nursing Research Conference, Portland, OR. Nunnally, J.C., & Bernstein, I.H. (1994). Psychometric theory (3rd ed.). New York: McGraw-Hill, Inc. Parfrey, P.S., Vavasour, H., Bullock, S., Henry, S., Harnett, J.D., & Gault, M.H. (1987). Symptoms in end-stage renal disease: Dialysis v transplantation. Transplantation Proceedings, 19, Parfrey, P.S., Vavasour, H., Henry, S., Bullock, M., & Gault, M.H. (1988). Clinical features and severity of nonspecific symptoms in dialysis patients. Nephron, 50, Parfrey, P.S., Vavasour, H.M., Bullock, M., Henry, S., Harnett, J.D., & Gault, M.H. (1989). Development of a health questionnaire specific for end-stage renal disease. Nephron, 52, Portenoy, R.K., Thaler, H.T., Kornblith, A.B., Lepore, J., Friedlander-Klar, H., Kiyasu, E., et al. (1994). The Memorial Symptom Assessment Scale: An instrument for the evaluation of symptom prevalence, characteristics and distress. European Journal of Cancer, 30A, Renal Network of the Upper Midwest, Inc. (2001). End Stage Renal Disease Network annual report. St. Paul, MN: Author. Rhodes, V.A., & Watson, P.M. (1987). Symptom distress the concept: Past and present. Seminars in Oncology Nursing, 3, Stevens, J.S. (2002). Applied multivariate statistics for the social sciences (4th ed.). Mahwah, NJ: Lawrence Erlbaum Associates. Stone, A., Shiffman, S., Schwartz, J., Broderick, J., & Hufford, M. (2002). Patient non-compliance with paper diaries. British Medical Journal, 324, U. S. Department of Health and Human Services. (2005). Protecting personal health information in research: Understanding the HIPAA Privacy Rule. Retrieved April 26, 2006, from ov/healthservicesprivacy.asp United States Renal Data System (USRDS). (2006). USRDS 2004 Annual data report. Retrieved on December 26, 2006, from Weisbord, S.D., Fried, L.F., Arnold, R.M., Fine, M.J., Levenson, D.J., Peterson, R.A., et al. (2005). Prevalence, severity, and importance of physical and emotional symptoms in chronic hemodialysis. Journal of the American Society of Nephrology, 16, Weisbord, S.D., Fried, L.F., Arnold, R.M., Rotondi, A.J., Fine, M.J., Levenson, D.J., et al. (2004). Journal of Pain and Symptom Management, 27, NEPHROLOGY NURSING JOURNAL January-February 2007 Vol. 34, No. 1 37

10 The Multidimensional Characteristics of Symptoms Reported by Patients on Hemodialysis ANNJ702 ANSWER/EVALUATION FORM The Multidimensional Characteristics of Symptoms Reported by Patients on Hemodialysis Anita Jablonski, PhD, RN Posttest Instructions Answer the open-ended question(s) below. Complete the evaluation. Send only the answer form to the ANNA National Office; East Holly Avenue Box 56; Pitman, NJ ; or fax this form to (856) Enclose a check or money order payable to ANNA. Fees listed in payment section. Posttests must be postmarked by February 20, Upon completion of the answer/evaluation form, a certificate for 1.5 contact hour will be awarded and sent to you. Please allow 2-3 weeks for processing. You may submit multiple answer forms in one mailing, however, because of various processing procedures for each answer form, you may not receive all of your certificates returned in one mailing. Complete the Following: Name: Address: Telephone: CNN: Yes No CDN: Yes No CCHT: Yes No Payment: ANNA Member - $15 Non-Member - $25 Rush Processing - Additional $5 ANNA Member: Yes No Member # Check Enclosed American Express Visa MasterCard Total Amount Submitted: Credit Card Number: Exp. Date: Name as it Appears on the Card: Special Note Your posttest can be processed in 1 week for an additional rush charge of $5.00. Yes, I would like this posttest rush processed. I have included an additional fee of $5.00 for rush processing. Note: If you wish to keep the journal intact, you may photocopy the answer sheet or access this posttest at Online submissions through a partnership with HDCN.com are accepted on this posttest at $20 for ANNA members and $30 for nonmembers. CE certificates will be available immediately upon successful completion of the posttest. 1. What would be different in your practice if you applied what you have learned from this activity? To increase awareness of the benefits of assessing all the symptoms that patients have rather than focusing on only select symptoms New Posttest Format Please note that this continuing education activity does not contain multiple-choice questions. We have introduced a new type of posttest that substitutes the multiple-choice questions with an open-ended question. Simply answer the open-ended question(s) directly above the evaluation portion of the Answer/Evaluation Form and return the form, with payment, to the National Office as usual. Strongly Strongly Evaluation disagree agree 2. By completing this offering, I was able to meet the stated objectives a. Discuss the benefits of assessing multidimensional symptoms in the clinical setting b. Describe methods that can be used to assess multidimensional symptoms in patients c. Summarize the needs determined in a study of multidimensional symptom assessments The content was current and relevant This was an effective method to learn this content Time required to complete reading assignment: minutes. I verify that I have completed this activity (Signature) 38 NEPHROLOGY NURSING JOURNAL January-February 2007 Vol. 34, No. 1