Hand Function and Performance of Daily Activities in Systemic Lupus Erythematosus

Transcription

1 Arthritis & Rheumatism (Arthritis Care & Research) Vol. 59, No. 10, October 15, 2008, pp DOI /art , American College of Rheumatology SPECIAL ARTICLE: DISABILITY AND REHABILITATION IN THE RHEUMATIC DISEASES Hand Function and Performance of Daily Activities in Systemic Lupus Erythematosus PIA MALCUS JOHNSSON, GUNNEL SANDQVIST, ANDERS BENGTSSON, AND OLA NIVED Objective. To investigate hand problems in patients with systemic lupus erythematosus (SLE) and to explore consequences on the ability to perform daily activities. Methods. One hundred nine patients with SLE completed a questionnaire assessing hand problems in terms of deficits in body structures, e.g., joints, and body functions including pain, grip force, and other physiologic functions of the hand, the Health Assessment Questionnaire (HAQ), and the Simple hand test. Patients who stated problems in hand function answered questions about performance of daily activities and to what extent different deficits in body structures and body functions interfered. Results. Seventy-three percent of patients experienced hand problems and 42% reported interference with performance of daily activities. Problems from body structures of the hand were distributed relatively evenly over joints and tendons/muscles. Reduced grip force and activity-induced pain were the most commonly reported problems in body functions. The most affected activity area was productivity, namely household tasks, work at home, work/study, and child care; least affected was self-care. Reduced grip force followed by fumbling and pain were the most frequently reported body functions to create difficulties in performing daily activities. When comparing patients with and without difficulties in performing daily activities, there were significant differences in problems from tendons/muscles, joints in the thumb, reduced force, stiffness, fumbling, numbness/tingling, and the HAQ. Conclusion. A majority of the study group had hand problems and almost half of the group experienced difficulties in performing daily activities due to SLE. The most affected activity area was productivity, where reduced grip force, fumbling, and pain were the most interfering body functions. INTRODUCTION Living with systemic lupus erythematosus (SLE) can have many consequences for the individual. Extreme tiredness, pain, joint stiffness, photosensitivity, and other symptoms can result in difficulties to perform daily activities in the way and to the extent the individual desires (1). The function of the hand is of vital importance in performing daily activities. Hand function in patients with SLE is sparsely documented in the literature. SLE is a multisystemic, autoimmune disorder with a heterogeneous clinical presentation. Symptoms from joints and skin affect as many as 90% of patients during the course of the disease (2). Many cases start with symptoms from joints, most commonly the small joints of the hand (3). Symptoms from hands can vary considerably, Pia Malcus Johnsson, RegOT, MSc, Gunnel Sandqvist, RegOT, PhD, Anders Bengtsson, MD, PhD, Ola Nived, MD, PhD: Lund University Hospital, Lund, Sweden. Address correspondence to Pia Malcus Johnsson, RegOT, MSc, Department of Rheumatology, Lund University Hospital, SE Lund, Sweden. Pia.Malcus@skane.se. Submitted for publication January 25, 2008; accepted in revised form July 10, from arthralgia to severely deformed fingers (3,4). Jaccoud s deformities in hands with SLE look similar to deformities in the rheumatoid hand, e.g., subluxation of the metacarpophalangeal (MCP) joints, swan-neck deformity, and ulnar deviation, but are due to changes in tendons and other soft tissues, while radiographs of the hand are mostly normal (2,5). The frequency of Jaccoud s deformities varies in different studies. Dray (2) found frequencies between 2.4% and 38%. Manthorpe et al (5) estimated that 2 4% of patients will develop Jaccoud s deformities during the course of the disease, and it is stated that despite severely deformed fingers, hand function is well-preserved. The International Classification of Functioning, Disability and Health (ICF) (6) can be used to understand how hand function is related to performance of daily activities. Deficits in body structures, e.g., joints and tendons, and body functions including pain and reduced grip force may lead to activity limitations and restrictions in participation. Normal hand function is characterized by freedom from pain, intact sensibility, joint stability, functional range of motion, and muscle strength, where freedom from pain and sensibility are the most important factors (7). Reduced force and pain have a strong correlation with difficulties in performing daily activities (8). 1432

2 Hand Function in SLE 1433 Participating in daily activities is a basic human need. The Canadian Model of Occupational Performance (9) stresses the importance of participation in meaningful activity. Each individual is unique and activities chosen are influenced by age, sex, and the individual s social and cultural context. Activities are classified into areas of selfcare, productivity, or leisure. These areas correspond with the domains of activity and participation in the ICF, namely self-care (washing oneself, dressing, eating and drinking), domestic life (household tasks, doing housework, assisting others), major life areas (education/work), and social and civic life (recreation and leisure). Hand function can be crucial for activity performance, both considering satisfaction with the actual result produced and the satisfaction of being able to perform the activity as such (10). Boomsma et al (11) found that two-thirds of a group of individuals with SLE had either periodically or permanently decreased the ability to perform daily activities, both at home and at work, which affected their economic as well as their psychological well-being. Studies regarding rheumatoid arthritis have found a relationship between depression and loss of performance of daily activities (12 14). Greco et al (15) found that pain is the most prominent reason for loss of performance of activities in SLE. In the everyday clinical situation, it is difficult to get a good view of to what extent and in what respect hand problems in SLE interfere with the individual s ability to perform daily activities. The aim of this study was to investigate hand problems in patients with SLE regarding deficits in body structures and body functions and to explore what consequences the deficits had on the ability to perform daily activities. PATIENTS AND METHODS Methods. One hundred thirty-nine patients with SLE all fulfilling at least 4 American College of Rheumatology 1982 classification criteria for SLE (16) and treated at University Hospital in Lund, Sweden were identified for this study. Other inclusion criteria were ages years and the ability to understand, read, and write the Swedish language. Two patients were excluded, 1 due to autism and 1 due to psychosocial reasons. Patients. This study is a quantitative cross-sectional study based on a questionnaire sent to the patients. The questionnaire was specially designed for the study and includes 5 different parts. The first part of the questionnaire consists of demographic data, including sex, age, handedness, employment, and retirement. The Health Assessment Questionnaire (HAQ) (17) was also included in the questionnaire. From the HAQ we also accounted for a number called the HandHAQ, which we use clinically. The HandHAQ consists of the actual sum of questions 2, 5, 6, 7, 15, 16, and 17 in the HAQ. The total sum can be between 0 and 21 and is meant to reflect the difficulties in performing daily activities due to hand problems. The HandHAQ was not tested for validity or reliability. An intraclass correlation coefficient (ICC) was calculated between the HAQ and the HandHAQ. Patients were asked for problems in body structures, namely wrists, joints in fingers and thumbs, muscles/tendons, and skin in the right and left hand. Body function questions consisted of pain at rest, activity-induced pain, fumbling, reduced force, stiffness, sensitivity to cold, and other. There were also yes/no questions about deformities, hand surgery, and problems experienced in performing daily activities due to SLE. This was a study-specific format following the interview clinically performed, and was not tested for validity or reliability. The Simple hand test was also included in the questionnaire. The test consists of 3 tasks, each performed by the right and left hand. The patient needs another person to assist them. The first task is to make a firm handshake. The second task is to hold a 4-finger grip around a pencil with straight MCP joints and flexed proximal interphalangeal and distal interphalangeal joints, while the other person tries to pull the pencil sideways from the grip. In the third task, the patient holds a piece of paper in a rounded pincer grip and the other person tries to pull it from the grip. In each task, the patient would record pain (yes/no) and if they were able to close the grip, hold the pencil, and hold the paper (yes/no). Hand function was considered normal when all 3 tasks were performed by either hand without pain. Together with instructions, a pencil was enclosed in the envelope in order to make the procedure in the hand test as standardized as possible. The Simple hand test was found to be valid and reliable (18). The patient was asked to identify 5 activities difficult to perform with regard to hand function. By structured answers, the patient graded the significance of their hand problem compared with other problems caused by the disease (not significant, small problem, moderate problem, or very significant) and their satisfaction with hand function (very content, rather content, somewhat discontent, or very discontent). The last part contained questions about different daily activities. The activity areas consisted of subareas from self-care, productivity, and leisure, including hygiene, dressing, eating and drinking, household tasks, work at home, child care, work/study, and leisure. Questions were answered by fixed alternatives for different levels of difficulty (no problem, varying, great, partly help, or impossible to perform). Only one alternative could be chosen in each area. With regard to body structure or body function disturbing performance of daily activities, many alternatives could be chosen in each area (pain, fumbling, reduced force, stiffness, skin problems, sensitivity to cold, and others). This was a study-specific format and was not tested for validity or reliability. The entire questionnaire was tested on 5 patients who did not participate in the study and was slightly modified before use. It was the patient s own perception of the problem that was used to stratify the patients in the study. This study was approved by the local ethics committee at the Faculty of Medicine, Lund University. Statistical analysis. Statistical analysis was performed with nonparametric tests for significance between variables and groups: chi-square test in nominal scale and

3 1434 Malcus Johnsson et al Table 1. Number of patients experiencing problems from body structures (n 109) Mann-Whitney U test in continuous variables. P values less than 0.05 were considered significant. RESULTS No. (%) Right wrist 53 (49) Left wrist 52 (48) Right-hand finger joints 59 (54) Left-hand finger joints 52 (48) Right thumb joints 45 (41) Left thumb joints 38 (35) Right-hand tendons/muscles 56 (51) Left-hand tendons/muscles 45 (41) Skin 18 (17) Total group. Completed questionnaires were returned from 109 patients (80%), including 100 women (92%) and 9 men (8%). Median age was 46 years (range 18 65) and median disease duration was 14 years (range 0 45). One hundred five patients (96%) were right-handed and 4 (4%) were left-handed. Thirty-six patients (33%) were full-time employees and 47 (43%) were in full-time retirement due to SLE. The rest were either working part-time or studying. The nonresponding patients included 22 women and 6 men with a median age of 44.5 years (range 26 64). Eighty patients (73%) experienced problems from the hands and 46 (42%) reported that the hand problems interfered with their ability to perform daily activities. Median value for the HAQ was 0.38 (range ) and for the HandHAQ was 1 (range 0 14). The ICC between the HAQ and the HandHAQ was 0.32 (95% confidence interval ). Seventeen patients (16%) had surgical treatment for their hands due to SLE and 27 (25%) reported deformities related to the disease. There was a significant association between disease duration and deformities (P 0.01) and a significant association between experienced problems from the hands and experienced difficulties in performing daily activities (P 0.001). Body structures and body functions. Problems from body structures of the hand were distributed relatively evenly over joints and tendons/muscles, whereas skin was the least reported body structure. There was a tendency for more problems in the right hand (Table 1). Reduced grip force and activity-induced pain were the most commonly reported body functions to be affected, followed by sensitivity to cold and fumbling (Table 2). Deficits in tendons/ muscles were significantly associated with difficulties in performing daily activities (P 0.001). Activity-induced pain was stated by 68 patients and of these, 55 patients (81%) also stated a significantly decreased grip force (P 0.001). Simple hand test. The Simple hand test was performed without difficulties by 39 patients (36%), whereas the rest of the patients experienced pain or some kind of difficulty in one or several tasks. There was a significant association between difficulties in performing the Simple hand test and the questions Do you experience problems from the hands? (P 0.001) and Do you experience difficulties in performing daily activities due to hand problems? (P 0.001). There was no association between disease duration and difficulties in performing the Simple hand test. Of the 27 patients who had deformities, 25 (93%) experienced some kind of difficulty in performing the Simple hand test (P 0.001). The majority of difficulties in the Simple hand test were reported in holding the pen with straight MCP joints in the right hand. Difficulties in holding the pen in the Simple hand test were associated significantly with deficits in muscles/tendons (P 0.001). Group with difficulties in performing daily activities. The group that reported difficulties in performing daily activities consisted of 46 patients (42%) from the total group, including 42 women and 4 men with a median age of 48.5 years (range 18 65) and a median disease duration of 16.5 years (range 0 45). In this group, 7 patients (15%) were fully employed, 11 (24%) were employed part-time, and 28 (61%) were retired due to SLE. Median value for the HAQ was 0.88 (range ) and for the HandHAQ was 5 (range 0 14). The number of patients with deformities and hand surgery were higher than in the original group, at 39% and 24%, respectively. Thirty percent of the patients in this group reported that their hand problem was significant in relation to other problems caused by the disease, and 54% had moderate problems. Thirty-one percent reported that they were very discontent with their hand function and 38% were somewhat discontent, meaning that a total of 69% were more or less concerned about their hand function. Consequences in daily activities. When asked about the 5 most difficult activities to perform, the highest frequency was stated in productivity (67.4%) followed by leisure activities (19.2%), and the least difficulties were in selfcare (13.4%). Activities most frequently stated were writing with a pen, opening jars, and lifting and carrying heavy objects. In all areas, the most frequently stated level of difficulty Table 2. Number of patients experiencing problems from body functions (n 109) No. (%) Reduced force 71 (65) Activity-induced pain 68 (62) Sensitivity to cold 60 (55) Fumbling 58 (53) Stiffness 51 (47) Numbness/tingling 46 (42) Pain at rest 41 (38) Other problems* 21 (19) * For example, swollen hands, cramp, blisters, trigger finger, shaking hands, reduced dexterity, and feverish feeling in hands.

4 Hand Function in SLE 1435 Figure 1. Level of difficulties in different activity areas. The percentage of patients who responded to the question is shown. In some areas (taking care of children and work/studies), the question was not relevant to some patients. was varying. No problem had the highest frequency in self-care, and the highest frequency of difficulties was experienced in productivity, namely household tasks, which also showed the highest frequency for help from others (Figure 1). Reduced grip force followed by fumbling and pain were the most frequently reported body functions to create difficulties in performing daily activities. Sensitivity to cold was most prominent in hygiene, household tasks, and leisure activities (Figure 2). Comparison between groups. Of the 109 patients, 29 had no problems from body structures or body functions and therefore no difficulties in performing daily activities due to hand problems. The remaining 80 patients had problems from body structures and body functions and were divided into 2 groups, those with (n 46) and those without (n 34) difficulties in performing daily activities. There were significant differences in some variables of body structures and body functions between the groups (Tables 3 and 4). The median HAQ value was 0.88 (range ) and the median HandHAQ value was 5 (range 0 14) in the group with difficulties to perform daily activities (n 46), whereas in the group without difficulties (n 34), the median values were 0.13 (range ; P 0.001) and 0 (range 0 11; P 0.001), respectively. different data evaluation methods, our study is in accordance with the results of other studies. The HAQ is a frequently used instrument in rheumatology. Milligan et al (19) confirmed the valid use of the HAQ as a measure of disability in female patients with SLE, and it has been found useful in epidemiologic studies as well as for clinical use. If the mean value of the HAQ had been used instead, it would have shown the same result as in other studies (20), which indicates a relatively low grade of difficulties in performing daily activities. The HAQ reflects all structures and functions of the body, not only the hand. Therefore, we added the HandHAQ as an indicator for the difficulties due to hand problems. The ICC between the HAQ and the HandHAQ showed that the instruments measure different aspects of disability. Milligan et al (19) found that different questions in the HAQ can discriminate between problems in different joints. The difference in the HandHAQ between the 2 groups indicates that the difference to a large extent is due to hand problems. Milligan et al (19) found that the HAQ does not correlate with the severity of the disease, but with the activity of the disease. A more active disease is prone to give more joint symptoms and pain (15), which in turn causes more problems in performing daily activities. In the present study, reduced grip force was the most prevalent finding and it also caused difficulties in almost half of the activity areas. Reduced grip force was strongly correlated with pain (21), which was also shown in this study. Concerning differences in problems in body structures and body functions between the 2 groups, with and without difficulties to perform daily activities, it is not possible to make an exact adjustment for multiple comparisons due to dependence between measurements. Significant P values ( 0.05) not reaching 0.01 could appear by random and should be interpreted with caution. The Simple hand test was constructed to detect deficits in hand function. It has been previously used in at least 5 studies (22 26), but never in studies of SLE. It is a selfadministered test and has been used to detect problems in hand function by mail survey within different populations in 4 studies (22,24 26). The test records pain, motion in joints, and function of muscles and tendons. It was considered well-suitable for this study in order to verify the problems experienced by patients with SLE. In our study, there was a significant association between deficits in ten- DISCUSSION The aim of this study was to detect hand problems in patients with SLE, how many patients experienced hand problems, which body structures and body functions were affected, and what consequences in performance of daily activities the hand problems resulted in. Our main finding is that a majority of the study group experienced problems from the hands and nearly half experienced difficulties in performing daily activities. The response rate was high (80%), which is why data could be considered representative. In spite of differences in the number of patients and Figure 2. Problems with body functions in relation to different activity areas. The percentage of patients who responded to the question is shown. In some areas (taking care of children and work/studies), the question was not relevant to some patients. Red. reduced; sens. sensitivity.

5 1436 Malcus Johnsson et al Table 3. Problems in body structures in the group who had difficulties in performing daily activities and in the group who did not Difficulty (n 46) No difficulty (n 34) P Right wrist Left wrist Right finger joints Left finger joints Right thumb joints Left thumb joints Right tendons/muscles Left tendons/muscles Skin dons/muscles and difficulties holding the pencil in the test, as well as with difficulties in performing daily activities. The hand test is considered to discriminate well between healthy hand function and hand function with some kind of deficit (18). Perhaps the test could be used on an everyday basis in practice for detecting hand problems in patients with SLE. The aim of this study was not to investigate this, but it can be further studied. The majority (55%) of patients reported sensitivity to cold as a problem. This is in accordance with the findings of Dray (2). Fumbling, a problem many patients described and that was also documented to be a relatively substantial problem in this study, is sparsely reported in the literature. A high percentage of deformities were reported in our study group, 25% in the total group and 39% in the group with difficulties in performing daily activities. It is plausible that patients also reported minor deviations or abnormalities as deformities; for example, a deficit to fully extend a small joint. Dray (2) found that deformities were directly correlated with disease duration, which was also the case in our study. Problems from skin were not of significance in the study group when only hands were considered; skin problems mostly affect other parts of the body in SLE. In the original group of patients, the distribution of sex was equal to the SLE population, but in the study group the percentage of men had decreased. Due to small numbers, no conclusions could be made regarding the relationship between sex and hand problems. Boomsma et al (11) reported that two-thirds of patients with SLE had difficulties in performing daily activities periodically or permanently. In the study, different aspects of what caused the difficulties were not asked, but rather the disease as a whole. This can explain the difference in our study result that showed difficulties for 42% of the patients when only asking about hand problems. Moses et al (27) demonstrated that patients with SLE in a mail-back survey experienced needs that were not fulfilled by health care. Help with tiredness (81%) was the most common need stated, followed by help with pain (73%) and help with not being able to do things one used to (72%). In their study, they found that the area most prone to difficulties was household tasks, which is in accordance with our results. This was also reported by Milligan et al (19), who found the most difficulties in household tasks and the least in eating. Moses et al (27) reported that people who were working had fewer difficulties in daily life. This corresponds with the fact that there was a higher percentage of patients who were retired in the group who had difficulties in performing daily activities in our study. Many studies have found a connection between loss of activities and depression in patients with rheumatoid arthritis (12 14). Even if a different rheumatologic diagnosis differs in regard to symptoms from organs and joints, there are great similarities in the consequences of the diseases (19). The aim of this study was not to investigate this aspect. Depression in SLE can have a wide range of causes. However, it is important to also consider this aspect in relation to hand function and performance of daily activities. Katz and Neugebauer (13) stressed the importance to try to eliminate the risk of losing the ability to perform daily activities. It is also important to find strategies to keep satisfaction with performance of activities even if there is a change in physical ability. Occupational therapy for patients with SLE focuses on the ability to perform daily activities by means of pain management, information about ergonomic tools, and energy conservation working methods, providing orthoses for the hands, instruction in hand exercise, and when needed, rehabilitation of the hand after surgery. It was important to reach as many patients as possible and therefore we chose to send a questionnaire. The patients who did not answer the questionnaire might not have experienced problems from their hands. With this study design we were not able to trace if this was the case. Spiegel et al (28) found a higher degree of admitting problems while filling in a questionnaire than while being interviewed. This might be the reason for the high frequency of hand problems recognized in our study compared with what is experienced in clinical practice. The patient might not be interested in discussing hand problems with the physician, especially if there are more urgent issues to be discussed, e.g., medication. One might not fully describe the situation even when asked about hand problems by the occupational therapist. There are studies showing that the patient and health professional differ in their estimation of the patient s health status (29,30). The physician and the patient not only differ in their judgment of how serious the symptom is, but also in how important the symptom is to the patient. Studies of SLE of the hand have stated that hand function Table 4. Problems in body functions in the group who had difficulties in performing daily activities and in the group who did not Difficulty (n 46) No difficulty (n 34) P Reduced force Activity-induced pain Sensitivity to cold Fumbling Stiffness Numbness/tingling Pain at rest Other problems

6 Hand Function in SLE 1437 is good in spite of deformities (2,5). This statement is based on the fact that the deformities are possible to retract, but there is no reflection about what pain, fumbling, or reduced force mean to the patient. Hewlett (29) meant that the patient and the physician focus on different aspects when estimating disease activity. The physician is more focused on physical problems, whereas the patient is more focused on psychological effects and can be influenced by needs, priorities, experiences, expectations, and attitudes. Many questionnaires do not ask about activities that patients find important (12). When Wressle et al (31) used the Canadian Occupational Performance Measure, the instrument derived from the Canadian Model of Occupational Performance, patients identified many unexpected activities as problem areas. In our study, many unexpected activities appeared when the patient was asked to define 5 activities most difficult to perform regarding hand function. Examples include petting the cat, sending text messages, sign language, putting a leash on the dog, pushing a swing, and braiding hair. Sandqvist et al (32) pointed out the importance of finding the person s needs in order to be able to help in the right way. The majority of the study group experienced deficits from different body structures and body functions in the hands. Almost half of the group stated difficulties in performing daily activities. The most affected activity area was productivity, namely household tasks, work at home, child care, and work/studies. Reduced hand force seems to be the most prominent body function to affect performance of daily activities. 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