APPLICATION OF THE ICF CHECKLIST IN THE CHINESE SYSTEMIC LUPUS ERYTHEMATOSUS PATIENTS: A CROSS-SECTIONAL STUDY
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Acta Medica Mediterranea, 2018, 34: 1281 APPLICATION OF THE ICF CHECKLIST IN THE CHINESE SYSTEMIC LUPUS ERYTHEMATOSUS PATIENTS: A CROSS-SECTIONAL STUDY WEI LI, CHENCHEN FENG, XIAOLI HE, YAN WU, JUAN WU, XIAOKUN HU, SHUZHEN ZHAO* West China Hospital of Sichuan University, Chengdu, Sichuan Province, China ABSTRACT Systemic lupus erythematosus (SLE) has wide damages on people’s function. Thorough explore of problems will benefit SLE patient’s needs determination, resources allocation, rehabilitation and outcomes assessment. Therefore, there was a need for an instrument that can conduct a comprehensive investigation of SLE people’s experienced problems. To identify SLE patients’ func- tion, disability and health problems and to provide references for the future development of SLE core sets. A cross-sectional study was conducted in the rheumatology outpatient in one general hospital in China.100 SLE patients’ function, disability and health problems were collected using expanded ICF checklist. Descriptive analysis was performed to summarize the data. Of the 150 categories, 55 categories were relevant to at least 20% of the patients, 28 from body functions and structures component, 14 from activities and participation component and 13 from environmental factors component. The mostly referred problems were fatigua- bility (96%) in body functions, joints (76%) in body structures. The most restricted activity was remunerative employment (71%), and patients’ mostly important facilitator was immediate family (47%), mostly referred barrier was light (96%).In conclusion, a large variety of problems were identified, reflecting the complexity of the lived experiences of SLE patients, and intervention should be taken based on those relevant categories. And this study also can serve as a reference for future development of SLE core set. Keywords:ICF, systemic lupus erythematosus, function. DOI: 10.19193/0393-6384_2018_5_197 Received January 30, 2017; Accepted March 20, 2018 Introduction Erythematosus Disease Activity Index (SLEDAI)(7), British Isles Lupus Assessment Group score Systemic lupus erythematosus (SLE) is a mul- (BILAG)(8), the European Consensus Lupus Activity tisystem, autoimmune, inflammatory disorder pre- Measure (ECLAM) (9) and the Systemic Lupus senting with manifestations from various organ, Activity Measure (SLAM)(10) have been widely used including joint, skin, kidney, brain, cardiovascular, to assess SLE patients’ disease activity. What’s lung and etc(1). It has wide damages on people’s more, the Systemic Lupus International physical(1), psychological(2) social function(3) as well Collaborating Clinics/American College of as quality of life(4). Comprehensive assessment is Rheumatology Damage Index (SLICC/ACR)(11) has important for patients since it’s the basis for treat- also been used to assess organ damages caused by ments. Since it affects various organs and results in SLE. different problems(5-6), it exerts great challenge to However, the above instruments focused determine SLE patient’s lived problems thoroughly. mainly on symptoms and structure damages, they Which scale can better assess patient’s function is lacked assessments on function problems caused by still under investigation. Although many disease those damages(12). Other scales such as the Medical activity instruments like the Systemic Lupus Outcomes Study Short Form 36 (SF-36)(13-14), the
1282 Wei Li, Chenchen Feng, et Al EuroQoL 5-domain measure (EQ-5D)(15), and the With convenience sample, patients met the LupusQoL (14,16), Systemic Lupus Erythematosus following criteria were enrolled in the study: Quality of Life Instrument (SLEQOL)(17) can reflect • being 18 years or older, patients’ function to some extent. But they lacked • diagnosed with 1997 American College of environmental factors which may also have impact Rheumatology criteria for SLE, on SLE patients(12). Meanwhile, all the above instru- • having no communication problem with ments have various contents, making it impossible interviewers, to compare different study results, limiting the com- • with no other comorbidities. prehensive understanding of SLE patients’ experi- enced problems and future intervention. Therefore, Outcome Measures there was a call for an instrument that can conduct a Primary outcome. ICF checklist was used to thorough explore of SLE people’s lived problems. assess patients’ function. Since the ICF Checklist is First reported by World Health Organization a generic instrument, This study extended its cate- (WHO) in 2001, the International Classification of gories to make it more specific to SLE(26). After a Functioning, Disability and Health (ICF) can help thorough literature review, with rheumatology to address those limitations. It offers a globally experts’ and rehabilitation therapist’s advices, this accepted framework to describe health and health- study determined 3 frequently used instruments to related problems of people from person and social match their contents with ICF categories. They level(18). were SLEDAI, SLICC, and SF-36. Two researchers ICF framework is consisted of four compo- linked independently to ICF categories based on nents: body functions (b), body structures(s), activi- established linking rules(28-30). If there were inconsis- ties and participation (d), and environmental factors tencies between two researchers, a third rehabilita- (e) and includes over 1400 categories. It can not tion therapist would join to discuss till all only describe people’s body function, structures and researchers reached a consensus. Finally, we added psychological status, but can also describe the indi- 22 categories, 17 from body functions and struc- vidual's life and social role. Still, it also depicts tures, 5 from activities and participation. So the environmental factors that having positive or nega- final instrument contained 150 categories. tive impacts on people, such as physical environ- Expanded categories were b126 temperament and ment, social relationship, social attitude and poli- personality functions, b160 thought functions, b180 cies etc. It is difficult to apply all 1400 categories experience of self and time functions, b215 func- into clinical and research use. So far, core sets of 34 tions of structures adjoining the eye, b415 blood diseases based on the ICF framework have been vessel functions, b610 urinary excretory functions, developed(19). Those core sets benefit patient’s needs b650 menstruation functions, b660 procreation determination, resources allocation, rehabilitation functions, b670 sensations associated with genital and outcomes assessment(20-22). To facilitate clinical and reproductive functions, b715 stability of joint use, 128 most important categories from the ICF functions, b720 mobility of bone functions, b740 framework were selected to form ICF checklist. muscle endurance functions, b810 protective func- ICF checklist serves as a simple instrument for clin- tions of the skin, b840 sensation related to the skin, ical workers to fill out patients and disease charac- b850 functions of hair, b860 functions of nails, teristics(23-27). There has been no study of SLE based s420 structure of immune system, d230 carrying on the ICF checklist, so this study used ICF check- out daily routine, d4101 squatting, d4105 bending, list as a basis to investigate SLE patients’ function, d4551 climbing, d4552 running. disability and health problems, and at the mean- The components of “body functions” “body time, to provide more detailed information for the structures” and “activities and participation” were future development of SLE core sets. assessed using the ICF qualifier, with 0-4 indicated no, mild, moderate and severe impairment. Methods Environmental factors were scored with +1/-1 for mild facilitator/barrier, +2/-2 for moderate facilita- Study design, setting and participants tor/barrier, +3⁄-3 for severe facilitator/ barrier and A cross-sectional study was conducted in a +4/ -4 for complete facilitator/barrier. 0 was regard- rheumatology outpatient in one general hospital in ed as no facilitator or barrier. The qualifier 8 was China. used if the available information was not sufficient
Application of the ICF checklist in the chinese systemic lupus erythematosus patients: a cross-sectional study 1283 to make a judgement and 9 if the category was not SLEDAI was 6. Patients with slight disease activity applicable. Qualifier 1-4 was rated as 1, and qualifi- and no activity accounted for 81% of the patients. er 0 as 0 during the data analysis.1 means having Median SLICC score was 0 (Table 1). problem and 0 means no problem. Categories rele- Characteristics No/score (range) vant to at least 20% of the patients were demon- strated in the results(31). Demographic data Additional outcomes. Self-Rating Anxiety Age, years (mean ± SD) 38.24±10.66(18-62) Scale (SAS) (32) , Self-Rating Depression Gender Scale(SDS) (33), Fatigue Severity Scale(FSS) (34), Female 98 Pittsburgh Sleep Quality Index (PSQI)(35) were also Male 2 used to get a deeper discussion of the patients’ lived Level of education problems. Illiterate 0 Demographic and clinical variables. Demographic characteristics were: age, gender, Elementary and junior high school 61 level of education, current work status, caregiver High school/vocational high school 27 number. Clinical variables were: disease duration, University and college 11 disease activity assessed with SLEDAI, organ dam- age index assessed with SLICC, psychological sta- Graduate school 1 tus assessed with SAS and SDS, pain scores, FSS Current work status scores, and PSOI scores. Retired 2 Unemployed 39 Data collection procedures Employed 59 A rehabilitation physician who was familiar with ICF conducted a one-day training for two out- Caregiver number (median) 1(0-4) patient rheumatology nurses. The training included Clinical variables research purposes, ICF introduction, general ques- Disease duration, years(median) 5.50(0.08-29) tions for 4 components, ICF matching rules, qualifi- SLEDAI scores(median) 6(0-37) er scale. Under the guidance of the rehabilitation physician, two nurses interviewed and recorded all 0-4 no activity 45 the SLE-related problems of the participants. 5-9 slight activity 36 10-14 moderate activity 13 Ethical considerations ≥15 severe activity 6 The study was approved by the Ethics Committees of West China Hospital of Sichuan SLICC score (median) 0(0-12) University (2017/137). Patients were informed SAS score (mean±SD) 43.38±10.53(25-73.75) about the aim and procedures of the study before SDS score (mean±SD) 0.47±0.11(0.26-0.81) and gave their informed consents. Pain score (median) 2 (0-9) Statistical analysis FSS score (median) 3.75(1-7) SPSS software (version 17.0; SPSS Inc., PSOI score (median) 8(1-20) Chicago, IL, USA) was used for analysis. Table 1: Demographic and clinical variables for SLE Descriptive analysis such as mean, standard devia- participants (n=100). tion, median, percentage, etc. were performed to SD=standard deviation. summarize patients’ characteristics and relevant ICF categories. Of the 150 categories, 55 categories were rele- vant to at least 20% of the patients, 28 from body Results functions and structures, 14 from activities and par- ticipation and 13 from environmental factors. A total of 100 SLE patients were enrolled in For body functions, fatiguability, maintenance this study. 98% of the patients were female. The of sleep, thought functions were mostly referred. As mean age was 38.24 years old. The average disease for body structures, joints were mostly damaged, duration was 7.04 years. The median score of followed by structure of areas of skin and structure
1284 Wei Li, Chenchen Feng, et Al of immune system. Other categories such as protec- ICF code Description n% tive functions of the skin, memory functions, pain and seeing functions were relevant to at least 20% d850 Remunerative employment 71 of patients (Table 2). d430 Lifting and carrying objects 60 ICF code Description n% d4552 Running 60 b4552 Fatiguability 96 d9201 Sports 60 b1342 Maintenance of sleep 91 d110 Seeing 58 b160 Thought functions 87 d4551 Climbing 53 s7701 Joints 76 d750 Informal social relationships 42 Protective functions of the b810 73 skin d760 Family relationships 42 s810 Structure of areas of skin 73 d230 Carrying out daily routine 36 b144 Memory functions 67 d770 Intimate relationships 33 b280 Pain 64 b210 Seeing functions 58 d4501 Walking long distances 29 Functions of immunological b435 55 d4101 Squatting 26 systems s420 Structure of immune system 55 d4105 Bending 26 Acquisition of goods and b1340 Amount of sleep 54 d620 23 services b1343 Quality of sleep 53 Table 3: ICF categories referring to activities and partici- pation (n=100). b152 Emotional functions 46 As for environmental factors, 10 facilitators b650 Menstruation functions 42 and 3 barriers were relevant to at least 20% of b28016 Joint pain 37 patients. Facilitators were mainly in e3 chapter sup- b530 Weight maintenance func- 37 port and relationship, e4 chapter attitude and e1 tions chapter products and technologies. b525 Defecation functions 33 b620 Urination functions 31 ICF code Description n% + s6100 Kidney 31 e310 Immediate family 47 b850 Functions of the hair 30 e570+ Social security services, systems and policies 43 s840 Structure of hair 30 Individual attitudes of immediate family e410+ members 42 b515 Digestive functions 29 e320+ Friends 38 b710 Mobility of joint functions 27 + e420 Individual attitudes of friends 34 b156 Perceptual functions 24 Acquaintances, peers, colleagues, neighbours e325+ and community members 28 b1302 Appetite 20 b410 Heart functions 20 Products or substances for personal consump- e110+ tion 27 b640 Sexual functions 20 e125+ Products and technology for communication 23 Table 2: ICF categories referring to body functions and structures (n=100). e355+ Health professionals 21 The most restricted activity was remunerative e440+ Individual attitudes of personal care providers 20 and personal assistants employment. Lifting and carrying objects, running, e240+ Light 96 sports (severe sports), seeing, climbing (several lay- + ers) were relevant to at least 50% of the patients. e225 Climate 54 Others categories like informal social relationships, e2500 + Sound intensity 30 family relationships, carrying out daily routine, and Table 4:ICF categories referring to environmental fac- intimate relationships were relevant to at least 20% tors (n=100). of SLE patients (Table 3). means facilitator + - means barrier
Application of the ICF checklist in the chinese systemic lupus erythematosus patients: a cross-sectional study 1285 In e3 chapter, facilitators were immediate fam- mild, though past studies did not describe disease ily, friends, acquaintances, peers, colleagues, neigh- activity of SLE patients, this may, to some extent, bors and community members and health profes- explained why the relevant categories were fewer sionals. In e4 chapter, facilitators were individual than those studies. attitudes of immediate family members, friends and For body functions, 96% of SLE patients had personal care providers and personal assistants. fatigue problems, in accordance with other studies Social security services, systems and policies, prod- that had showed fatigue can be experienced by 90% ucts or substances for personal consumption and of SLE patients(38-39). According to the PSQI, 53% of products and technology for communication were patients had impaired quality of sleep, which was in other facilitators. Light was mostly commonly line with other reports (55% -85%) .The results referred barrier, followed by climate and sound of this study also showed that 91% of the patients intensity (Table 4). had sleep maintenance problems, and 54% had decreased sleep amount. While previous study Discussion focused more on sleep quality(40), other sleep-related indicators may be under estimated. This indicated Past studies adopted different tools to assess that the use of ICF could conduct more detailed SLE patients’ problems, and different instruments information for a common problem. With the use of made it difficult to compare different studies. SAS and SDS, this study found that 26 patients had Though ICF has been applied in a few researches in anxiety, 42 patients had depression and 20 patients SLE patients. For example, Bauernfeind’s study showed both anxiety and depression, in line with was an innovative Delphi study of patients through the result that 46% of the patients had problems in email, with open-ended, self-developed questions b152 emotional functions. Disease activity (41), based on ICF framework(3), but the procedure may pain(42), anxiety(42), depression(43) can influence sleep be difficult to apply in other studies. Leuchten has quality of SLE. And decreased sleep quality causes done excellent work in a Delphi exercise of experts reduced function, quality of life(42). and a literature review to explore relevant concepts Suggestions were that attention should be paid of functioning for SLE patients, but lacking to patients’ psychological status and sleep problems patients’ perspective(36). This was the first study to and interventions should also be taken to tackle use ICF checklist as a framework to explore those commonly referred problems. Chinese SLE patients’ problems. Additionally, with As for body structures, not surprisingly, most- literature review and expert advices, this study ly damaged body structures were joints, skin, added 22 other categories relevant to SLE patients immune system, kidney, and structure of hair(44). to make a more comprehensive investigation of In terms of activities and participation, past SLE. This study also adopted other scales such as study has shown that SLE patients had problems in SAS, SDS, FSS, PSQI for a deeper understanding recreation and leisure, moving around using trans- and discussion of the results. This study served as portation and others(3). The majority of the patients an exploration of the feasibility in applying expand- surveyed did not participate in these referred activi- ed ICF checklist in SLE patients, and may be con- ties, so the relevant category was marked “9” and ducive to the future development ICF core sets for they were not demonstrated in the results. SLE patients from different culture. Remunerative employment (71%) was mostly influ- 55 categories were related to at least 20% of the enced in this study, which was in accordance with patients. Body functions and structures demonstrated Bauernfeind’s study(3). Such results further indicated the highest number of problems, which was in line SLE exerted huge influence on patients’ activity. with past studies(3, 12). But in this study, the number of Noteworthy, patients’ informal and formal social relevant categories in this component was fewer than relationships had also been affected. With deeper those studies. Different disease activity presenting interview, some patients referred disease symptoms, with different manifestations, and higher disease fatigue, burden of caregiver, negative psychological activity contributed more problems(37). Patients in this status as some of the reasons for damaged relation- study all came from outpatient, and the median score ships. Social support had some positive influences of SLEDAI was 6. Patients showing no activity and on releasing disease activity(45), reducing damage(45), mild activity accounted for 81% of the clients. stress, and improving quality of life (46-47). Such Enrolled participates’ overall disease activity was results reminded us strategies should be taken to
1286 Wei Li, Chenchen Feng, et Al improve patients’ social relationships. Medical staff also indicate some insufficient in support system in should routinely ask patients relationship with fam- china, especially for rural people. Same with previ- ily and others. This simple question may help ous study, light, climate and sound intensity were explain patients’ psychological status and disease main barriers for SLE patients(3). management outcomes. And medical staff should The study had some limitations. Firstly, SLE also encourage family members and others to par- patients came from only one hospital. The sample ticipate in patients’ care. size was relatively low, and patients with no activi- Within environmental factors, support and ty and mild activity accounted for 81%, which may relationship from immediate family, friends, affect the representativeness of the sample. Patients acquaintances and health professionals were impor- with higher score in SLEDAI may show more prob- tant facilitators, which was consistent with another lems. Future investigation can focus on a specified finding(48). In this study, 83 patients had at least one type or disease activity level to make a deeper caregiver. The caregivers of the patients were main- exploration of them. Secondly, only three common- ly relatives, friends and companions. Individual ly used tools were matched with ICF, so some rele- attitudes of immediate family members, friends, vant categories may be omitted. But this study con- personal care providers and personal assistants ducted for about 60-minute in-depth interview, and remained predominantly positive for patients. It has the patient's lived problems have been completely been reported that SLE patients can be subject to recorded. Problems relevant to at least 20% of the negative social attitudes(49). And several patients in patients were demonstrated in the results. By this this study did indicate that they’ve suffered nega- way, no category not included in the 150 expanded tive attitude from family members due to heavy ICF checklist was found out. economic and caregiver burden. Proposed sugges- tions include strengthening government financial support and expanding medical insurance coverage, Conclusions as well as enhancing social support systems. Some patients used mobile phones for regis- In summary, the results of this study delivered tration to ensure regular visits to the hospital or to a large variety of problems, reflecting the complexi- know the weather conditions for avoiding the ty of the lived experiences of outpatient SLE adverse weather. A small number of patients also patients. Intervention can be conducted based on used mobile phones to participate in the patient those problems. The study also confirmed the suit- communication group to acquire health knowledge, ability of using expanded ICF checklist as a frame- but none of them got extra health education from work to describe SLE patients’ functioning, disabil- medical staff out of hospital. This reflected lacking ity and health. And the expanded ICF checklist can in sustained health education in China, as medical apply to investigate SLE patients. The results can services mainly restricted in hospital. SLE is a also serve as a support for the future development chronic disease, with long treatment time and high of SLE core set, which may benefit target interven- cost(1, 5), and purchase of medical insurance can do tion and resources allocation as well as outcome alleviate the economic burden of patients to a cer- assessment. But the sample size was small and the tain extent. So the patient considered social security percentage of the patients with higher score in services, systems and policies to be a facilitator. SLEDAI was low. This study will expand the sam- The above results remind medical staff should con- ple size to do further research to focus on a speci- cern about those facilitators and strengthen them to fied type to make a deeper exploration. improve patients’ outcomes, such as providing innovative medical services based on mobile phone. Patient felt less experienced with the services, systems and policies, and most patients considered References those had little impact on themselves. Since most of the patients came from rural areas, with relatively 1) Askanase A, Shum K, Mitnick H. Systemic Lupus Erythematosus: An Overview. Soc Work in Health Care lower education level, their experiences and feel- 2012; 51: 576-586. ings of relevant categories were weak. Most of 2) Barbasio C, Vagelli R, Marengo D, et al. Illness percep- them deemed that those policies had no direct tion in systemic lupus erythematosus patients: The impact on them. On the other hand, this result may roles of alexithymia and depression. Compr Psychiatry 2015; 63: 88-95.
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