APPLICATION OF THE ICF CHECKLIST IN THE CHINESE SYSTEMIC LUPUS ERYTHEMATOSUS PATIENTS: A CROSS-SECTIONAL STUDY

 
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%) [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 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,
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