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), the1282 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 sufficientApplication 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 structure1284 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 barrierApplication 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%) [40].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 to1286 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.
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