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Keywords:

  • International Classification of Functioning, Disability and Health (ICF);
  • Patient perspective;
  • Comprehensive ICF Core Set for RA;
  • Rheumatoid arthritis

Abstract

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. METHODS
  5. RESULTS
  6. DISCUSSION
  7. Acknowledgements
  8. REFERENCES

Objective

To validate the International Classification of Functioning, Disability and Health (ICF) Comprehensive Core Set for Rheumatoid Arthritis (RA) from the patient perspective.

Methods

Patients with RA were interviewed about their problems in daily functioning. Interviews were tape recorded and transcribed verbatim. Interview texts were divided into meaning units. The concepts contained in these meaning units were linked to the ICF according to 10 established linking rules. Of the transcribed data, 15% were analyzed and linked by a second health professional. The degree of agreement was calculated using the kappa statistic.

Results

Twenty-one patients were interviewed. Two hundred twenty different concepts contained in 367 meaning units were identified in the qualitative analysis of the interviews and linked to 109 second-level ICF categories. Of the 76 second-level categories from the ICF RA Core Set, 63 (83%) were also found in the interviews. Twenty-five second-level categories, which are not part of the current ICF RA Core Set, were identified in the interviews. The result of the kappa statistic for agreement was 0.62 (95% bootstrapped confidence interval 0.59–0.66).

Conclusion

The validity of the ICF RA Core Set was supported by the perspective of individual patients. However, some additional issues raised in this study but not covered in the current ICF RA Core Set need to be investigated.


INTRODUCTION

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. METHODS
  5. RESULTS
  6. DISCUSSION
  7. Acknowledgements
  8. REFERENCES

Rheumatoid arthritis (RA) is a chronic disabling disease (1) that often is associated with the inability to conduct occupations, such as paid work and other daily activities. Ultimately, patients' daily activities may become limited and their societal participation restricted (2–9). People with RA experience a decrease in overall functional ability and quality of life (2) and a greater loss of their life activities than people without RA (7).

Assessing, exploring, and understanding the patients' daily functioning are essential when treating people with RA. Health professionals who specialize on rehabilitation focus on the daily functioning of the patient (10). Current recommendations regarding assessment of disease and disease consequences include recommendations to measure function, mainly referring to physical function (11). To map and assess daily functioning and disability from a holistic biopsychosocial perspective in rehabilitation, the framework of the World Health Organization International Classification of Functioning, Disability and Health (ICF) can be used. The overall aim of the ICF classification is to provide a unified and standard language for the description of health and health-related conditions in rehabilitation and a common framework for all health professions (12–14).

The ICF has 2 parts, each containing separate components. Part 1 covers functioning and disability and includes the components body functions (b) and structures (s) and activities and participation (d). Part 2 covers contextual factors and includes the components environmental factors (e) and personal factors (Figure 1). Each component consists of several chapters and within each chapter, categories, which are the units of the classification (14). Chapters represent health domains that are used to organize the classification. An example is Chapter 5: self-care within the component activities and participation.

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Figure 1. The model of the International Classification of Functioning, Disability and Health (ICF). The model shows the relationship between the ICF components body functions (b) and structures (s) and activities and participation (d) and the contextual factors environmental factors (e) and personal factors. Each component consists of chapters that then consist of categories. Within the component activities and participation, Chapter 5: self-care includes the categories “d510 washing oneself” (second-level) and “d5100 washing body parts” (third level) among many others.

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To facilitate the application of the ICF in clinical practice, specific Comprehensive ICF Core Sets (abbreviated in this article as ICF Core Sets) for certain health conditions have been developed. ICF Core Sets are short lists of ICF categories that are important for patients with a specific disease. The ICF Core Set for RA is a short list of ICF categories that are important for patients with RA and is meant to include all relevant ICF categories by representing the typical spectrum in functioning of patients with RA (15).

The ICF RA Core Set was developed by rheumatology health professionals in a formal decision-making and consensus process. In this process, evidence was integrated from preliminary studies. These preliminary studies included a delphi exercise involving health professionals as experts, a systematic literature review, and an empiric data collection that was done quantitatively with a checklist (15). The consensus process revealed a current, preliminary version of the ICF RA Core Set. The current, preliminary version of the ICF RA Core Set now needs to be validated and further developed.

One aspect in this validation process is to explore the patient perspective. To explore the perspective of patients, a qualitative research approach was considered most appropriate. When measuring and assessing daily functioning in people with RA from a holistic biopsychosocial perspective in rehabilitation, it is important to include the patient perspective because personal values for outcomes vary between and within patients and professionals (16, 17). Qualitative methodology provides the possibility of exploring the perspective of those who experience the disease (the patient perspective) (16, 18, 19).

ICF Core Sets have been developed for other chronic diseases apart from RA, and preliminary versions have been established. The next step is validation. The ICF RA Core Set is the first to undergo validation. Therefore, the present study is also considered a methodologic pilot study for the validation and development of ICF Core Sets for other diseases and health conditions.

The objective of this study therefore was to validate the current, preliminary version of the ICF RA Core Set from the patient perspective using a qualitative approach. The specific aims were to 1) explore the aspects of functioning and health that are important to patients with RA, 2) examine how these aspects are represented by the current version of the ICF RA Core Set, 3) possibly identify aspects of functioning important for people with RA that are not included in the ICF RA Core Set, and 4) explore the qualitative methodology in this pilot study for further validation and development of ICF Core Sets for other diseases.

METHODS

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. METHODS
  5. RESULTS
  6. DISCUSSION
  7. Acknowledgements
  8. REFERENCES

We conducted a qualitative study based on interviews with patients with RA.

Patients.

All patients with RA diagnosed according to the revised American College of Rheumatology (formerly the American Rheumatism Association) criteria (20) who had appointments on 5 consecutive, randomly selected days in the Rheumatology Outpatient Clinic of the Vienna Medical University were asked to participate. Patients who were willing to participate gave written informed consent according to the Declaration of Helsinki 1996. The study was approved by the Institutional Review Board of the Vienna Medical University.

Sample size.

A small sample size with a diverse range of participants was used to obtain the required level of rich and meaningful data (21). Patients were included in the study until saturation was reached. Saturation refers to the point at which an investigator has obtained sufficient information from the field (22). Saturation was defined in our study as the point during data gathering when the linking of the qualitative data of 2 consecutive interviews revealed no additional information that was not obtained before.

Interviews.

All participants were interviewed by the same interviewer (TS). The interviews were tape recorded and transcribed verbatim. A short introduction to the concepts of the ICF was given in lay terms to all patients at the beginning of each interview. Then, 2 different types of interviews were performed. Interview type 1 included open-ended questions that were formulated around functioning in daily life: patients were asked which RA-related problems of their body functions they were experiencing, which body structures were involved, which limitations of activities and restrictions in participation were significant to them, and which environmental factors and which personal factors were barriers or facilitators for them. In interview type 2, patients were presented titles and definitions of all the ICF chapters of which the categories are included in the ICF RA Core Set. After having presented the title and definition to them, the patients were asked open-ended questions to describe in their own words any problems they personally experienced related to each specific ICF chapter.

Each patient was randomized to being interviewed according to either a type-1 or type-2 schedule. Because it was not possible to define a single appropriate, accepted interview method for the purpose of this study, both interview types were applied to gather the richest possible data for the qualitative analysis and to cover a broad spectrum of possible questions for the patients. The analysis and the results of the 2 types of interviews were performed and reported together.

Qualitative data analysis.

Qualitative data analysis followed the method of meaning condensation (19). In the first step, the transcribed interviews were read through to get an overview of the collected data. In the second step, the data were divided into meaning units and the theme that dominates a meaning unit was determined. A meaning unit was defined as a specific unit of text, either a few words or a few sentences with a common theme (23). Therefore, a meaning unit division does not follow linguistic grammatic rules. Rather, the text was divided where the researcher discerned a shift in meaning (19). In the third step, the concepts contained in the meaning units were identified. A meaning unit could contain more than one concept. In the final step, every concept was linked to ICF categories according to published linking rules (24).

An example for a meaning unit is “using a shopping device that I can pull behind me because I have problems with shopping.” In this meaning unit, the concepts “problems with shopping” and “shopping device” were identified.

Linking to the ICF.

In the ICF classification, the letters b, s, d, and e, which refer to the components of the ICF, are followed by a numeric code starting with the chapter number (1 digit), followed by the second level (2 digits), and the third and fourth levels (1 digit each). The component letter with the suffix of 1, 3, 4, or 5 digits corresponds to the code of the category. Categories are the units of the ICF classification. Within each chapter, there are 2-, 3-, as well as 4-level categories. An example selected from the component body functions (b) would result in the following code: “b2 sensory functions and pain” as the first level, “b280 sensation of pain” as the second level, “b2801 pain in body part” corresponding to the third level, and “b28013 pain in back” as the fourth level.

Within each component, the categories are arranged in a stem/branch/leaf scheme. Consequently, a lower level category shares the higher level categories of which it is a member, i.e., the use of a lower level (more detailed) category automatically implies that the higher level category is applicable, but not the other way round.

Every concept of each meaning unit from the interviews was linked to the most precise ICF category using the same linking rules that have been developed to link health-status measures to the ICF in a specific and precise manner (24). According to these linking rules, health professionals trained in the ICF are advised to link each concept of a model to the ICF category representing this concept most precisely. If a meaning unit contains more than one concept, it was linked to more than one ICF category. An example is the meaning unit “using a shopping device that I can pull behind me because I have problems with shopping,” which contains the concepts “problems with shopping” and “shopping device.” The concept “problems with shopping” was linked to the ICF category “d6200 shopping.” The concept “shopping device” was linked to the ICF category “e120 products and technology for personal indoor and outdoor mobility and transportation, specification: shopping device.”

According to rule 10, if a concept was not contained in the ICF classification, this concept was assigned the code “nc” (not covered) (24). An example is the concept “employer's policies,” which was found to be not covered by the ICF and was therefore linked as “nc.” One interviewee who was a nurse reported that although she was able to do her job as a nurse, she was not able to do other physically stressful tasks that she had to do. She had to handle and carry heavy objects, such as carrying lunch trays from the kitchen a long distance to the patients. She did not consider this related to her job as a nurse, but rather thought that her employer's policy was a barrier for her doing her job.

However, 2 modifications beyond the linking rules were made for this study, namely, if the content of a concept was not explicitly named in the corresponding ICF category, the second level of the ICF classification was linked, rather than the “other specified” option at the third and fourth coding level of the ICF classification. The second modification was that, if a patient was more specific than the ICF, the specification of the patient was documented.

Procedure to confirm the ICF RA Core Set categories.

A category for the ICF RA Core Set was regarded as confirmed if the identical or a similar category emerged from the interviews. An example is the ICF category “s299 eye, ear and related structures, unspecified,” which was regarded as confirmed by “s230 structures around eyes.”

For the analysis, all third- and fourth-level categories were moved to the second level. In general, concepts were only counted once.

Accuracy and rigor of the analysis.

In addition to the linking by the first author, 15% of the transcribed interview text covering 2 whole interviews and several parts of other interviews were analyzed and linked by a second health professional (MC). The degree of agreement between the 2 investigators regarding the linked concepts was calculated by means of the kappa statistic (25). Values of kappa generally range from 0 to 1, where 1 indicates perfect agreement and 0 indicates no additional agreement beyond what is expected by chance alone.

Kappa by definition is bound by 1, i.e., its sampling distribution becomes progressively skewed to the left as kappa approaches 1. Because the asymptotic confidence interval does not take this skewness into account, especially with small sample sizes, and can produce upper confidence limits that exceed 1, bootstrapped intervals, which are produce by percentiles of samples based on the observed data, were calculated (26).

The data analysis was performed with SAS for windows V8 (SAS Institute, Cary, NC).

RESULTS

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. METHODS
  5. RESULTS
  6. DISCUSSION
  7. Acknowledgements
  8. REFERENCES

Participants and interviews.

Twenty-one patients participated in this qualitative study. Demographic data of the participants are shown in Table 1. Saturation was reached after 13 interviews from type 1 (participants A–M) and after 8 interviews from type 2 (participants N–U). Mean ± SD time for type-1 interviews was 54.9 ± 6.9 minutes compared with 63.9 ± 8.2 minutes for type-2 interviews. The transcribed data resulted in 4,128 lines of text.

Table 1. Demographic data of the patients*
PatientSexEmploymentEducational levelDisease duration, yearsAge, years
  • *

    Patients in our sample seem to be older, but represent the typical average age group of patients with rheumatoid arthritis (RA) in our outpatient clinic (mean age was 52 years in our early RA cohort and 57 years in the late RA cohort, respectively [31]).

AFRetiredCommercial college257
BFNurseNursing school630
CFRetired, self employedCommercial school579
DFRetiredSecondary school2665
EMRetiredUniversity466
FMUnemployedVocational training557
GFRetiredCommercial school459
HFRetiredSecondary school2364
IFRetiredSecondary school2969
JFClerical workCommercial school139
KFRetiredCommercial school261
LFRetiredSchool for housekeeping166
MFHomemaker, studentUniversity1643
NFRetiredCommercial college1358
OFRetiredVocational training361
PMRetiredTeacher773
QFRetiredVocational training2364
RFRetiredVocational training1170
SFClerical workUniversity946
TFUnemployedVocational training1.525
UFRetiredSales training2659
Mean   10.757.86
SD   9.5213.79
Median   661

Linking of the qualitative interview data to the ICF.

Two hundred twenty different concepts contained in 367 meaning units were identified in the qualitative analysis of the interview data of the patients and were linked to 109 second-level ICF categories. Seven concepts from the interviews could not be linked to detailed ICF categories because of their broader meaning, but instead were linked to the following 7 higher-ranking ICF chapters: mental functions, structures related to movement, mobility, self-care, domestic life, support and relationships, and attitudes.

Fifteen ICF categories were identified only in type 1 interviews, 26 categories were identified only in type 2 interviews, and 68 ICF categories were found in both interview types. For all further analyses, the categories of both interview types were documented and reported together because the purpose of using the 2 interview types was to gather the richest possible data.

The following 9 concepts were assigned to the not-yet-developed ICF component personal factors: “development and maintenance of habits,” “lying as a strategy to deal with RA,” “self-perception,” “to keep up,” “attitudes of oneself,” “to want to reach something in life,” “to make the best out of it,” “knowledge,” and “the biographical experience of time.” One concept was found to be not covered by the ICF among the environmental factors: “employer's policies.”

The result of the kappa statistic for agreement between the 2 investigators was 0.62. The 95% bootstrapped confidence interval, which indicates the precision of the estimated kappa coefficient, was 0.59–0.66. Thus, the lower limit of the confidence interval exceeded the value 0.5.

Exploring the patient perspective on the ICF RA Core Set.

If all categories from the third and fourth level were moved to the second level and all specifications were excluded, 63 second-level categories from the ICF RA Core Set (83% of the categories) were found identically in the interviews (Tables 2–4).

Table 2. ICF categories of the component body function and structures included in the ICF RA Core Set compared with the patient perspective*
ICF code2nd levelICF category titlePatient perspective
  • *

    If a category was linked to a concept that emerged from the interviews, the category from the ICF RA Core Set was regarded as confirmed (C). ICF = International Classification of Functioning, Disability and Health; RA = rheumatoid arthritis.

Body functions   
 b130b130Energy and drive functionsC
 b134b134Sleep functionsC
 b152b152Emotional functionsC
 b180b180Experience of self and time functionsC
 b280b280Sensation of painC
 b430b430Hematologic system functionsC
 b455b455Exercise tolerance functionsC
 b510b510Ingestion functionsC
 b640b640Sexual functionsC
 b710b710Mobility of joint functionsC
 b715b715Stability of joint functionsNot confirmed
 b730b730Muscle power functionsC
 b740b740Muscle endurance functionsC
 b770b770Gait pattern functionsNot confirmed
 b780b780Sensations related to muscles and movement functionsNot confirmed
Body structures   
 s299s299Eye, ear and related structures, unspecifiedConfirmed according to similar category: s230
 s710s710Structure of head and neck regionC
 s720s720Structure of shoulder regionC
 s730s730Structure of upper extremityC
 s750s750Structure of lower extremityC
 s760s760Structure of trunkC
 s770s770Additional musculoskeletal structures related to movementC
 s810s810Structure of areas of skinC
Table 3. ICF categories of the component activities and participation included in the ICF RA Core Set compared with the patient perspective*
ICF codeICF category titlePatient perspective
  • *

    If a category was linked to a concept that emerged from the interviews, the category from the ICF RA Core Set was regarded as confirmed (C). ICF = International Classification of Functioning, Disability and Health; RA = rheumatoid arthritis.

d170WritingC
d230Carrying out daily routineNot confirmed
d360Using communication devices and techniquesNot confirmed
d410Changing basic body positionC
d415Maintaining a body positionC
d430Lifting and carrying objectsC
d440Fine hand useC
d445Hand and arm useC
d449Carrying, moving, and handling objects, other specified and unspecifiedConfirmed according to similar category: d430
d450WalkingC
d455Moving aroundC
d460Moving around in different locationsC
d465Moving around using equipmentC
d470Using transportationC
d475DrivingC
d510Washing oneselfC
d520Caring for body partsC
d530ToiletingC
d540DressingC
d550EatingC
d560DrinkingC
d570Looking after one's healthC
d620Acquisition of goods and servicesC
d630Preparing mealsC
d640Doing houseworkC
d660Assisting othersC
d760Family relationshipsNot confirmed
d770Intimate relationshipsNot confirmed
d850Remunerative employmentC
d859Work and employment, other specified and unspecifiedConfirmed according to similar category: d850
d910Community lifeC
d920Recreation and leisureC
Table 4. ICF categories of the component environmental factors included in the ICF RA Core Set compared with the patient perspective*
ICF codeICF category titlePatient perspective
  • *

    If a category was linked to a concept that emerged from the interviews, the category from the ICF RA Core Set was regarded as confirmed (C). ICF = International Classification of Functioning, Disability and Health; RA = rheumatoid arthritis.

e110Products or substances for personal consumptionC
e115Products and technology for personal use in daily livingC
e120Products and technology for personal indoor and outdoor mobility and transportationC
e125Products and technology for communicationNot confirmed
e135Products and technology for employmentC
e150Design, construction and building products and technology of buildings for public useNot confirmed
e155Design, construction and building products and technology of buildings for private useC
e225ClimateC
e310Immediate familyC
e320FriendsC
e340Personal care providers and personal assistantsC
e355Health professionalsC
e360Other professionalsNot confirmed
e410Individual attitudes of immediate family membersC
e420Individual attitudes of friendsC
e425Individual attitudes of acquaintances, peers, colleagues, neighbors, and community membersC
e450Individual attitudes of health professionalsC
e460Societal attitudesC
e540Transportation services, systems, and policiesNot confirmed
e570Social security services, systems, and policiesC
e580Health services, systems, and policiesC

“Carrying out daily routine” is included in the ICF RA Core Set and was not confirmed in the interviews. However, patients were more specific by presenting examples in the interviews instead of staying on a more general level, such as carrying out daily routine. For example, in the area of caring for the body, which can be considered daily routine, the categories “d510 washing oneself,” “d5100 washing body parts,” “d5102 drying oneself,” “d5201 caring for teeth,” and “d5204 caring for toenails” emerged from the interviews.

Instead of “d770 intimate relationships,” the category “b640 sexual functions” was linked in the interviews because the patients reported problems with their body functions in this area rather than their intimate relationships. Category “b640 sexual functions” is included in the ICF RA Core Set. Category “d859 work and employment, other specified and unspecified” was considered to represent a more general aspect of “d850 remunerative employment.” Instead of “d449 carrying, moving and handling objects, other specified and unspecified,” “d430 lifting and carrying objects” emerged in the interviews (Table 3).

Twenty-five additional second-level categories emerged from the interviews that are not represented in the current version of the ICF RA Core Set (Table 5). Categories “d8451 maintaining a job” and “d3452 terminating a job,” which emerged in the interviews, were regarded as covered by the “d850 remunerative employment,” which is included in the ICF RA Core Set. Category “b4350 immune response” was regarded as covered because “b430 functions of the hematologic and immune systems” is included in the ICF RA Core Set.

Table 5. Additional ICF categories from the interviews*
ICF codeICF category titleSecond level
  • *

    Twenty-five additional second-level categories emerged from the interviews that are not included in the current version of the ICF RA Core Set. SE indicates that some of these categories could be related to side effects of drugs according to the existing literature.

b1263Psychic stability—SEb126
b1265Optimism 
b1400Sustaining attention—SEb140
b144Memory functionsb144
b1442Retrieval of memory 
b1641Organization and planningb164
b1642Time management 
b4552Fatiguability 
b5252Frequency of defecation—SEb525
b7601Control of complex voluntary movementsb760
b7602Coordination of voluntary movements 
b820Repair functions of the skin—SEb820
b840Sensations related to the skin—SEb840
s320Structure of mouths320
d4201Transferring oneself while lyingd420
d6505Taking care of plants indoors and outdoorsd650
d7500Informal relationships with friendsd750
d8700Personal economic resourcesd870
e1400General products and technology for culture, recreation, and sporte140
e1650Financial assetse165
e315Extended familye315
e325Acquaintances, peers, colleagues, neighbors, and community memberse325
e330People in positions of authoritye330
e350Domesticated animalse350
e430Individual attitudes of people in positions of authoritye430
e445Individual attitudes of strangerse445
e455Individual attitudes of other professionalse455
e465Social norms, practices, and ideologiese465
e5550Associations and organizational servicese555
e5850Education and training servicese585
e5852Education and training policies 

DISCUSSION

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. METHODS
  5. RESULTS
  6. DISCUSSION
  7. Acknowledgements
  8. REFERENCES

In this qualitative study, the validity of the ICF RA Core Set was supported by the perspective of the individual patients. We could demonstrate that a large number of the categories included in the ICF RA Core Set address issues considered important to patients. However, some additional issues were raised in this study that are not covered in the current version of the ICF RA Core Set. An example is fatigue. Fatigue came up in our interviews and was linked to the “b130 energy and drive functions” as well as to the third-level category “b4552 fatiguability” because the patients' description of fatigue was related to the definitions of both ICF categories. Category “b130 energy and drive functions” is included in the ICF RA Core Set, but “b4552 fatiguability” is not included. Fatigue was identified at Outcome Measures in Rheumatology Clinical Trials VI as an area of particular importance to patients with RA (18). In a qualitative study on rheumatology outcomes important to patients with RA, the patients identified fatigue, pain, disability, and a general feeling of wellness as their major concerns (27). Thus, from the results obtained, we would suggest that the third-level category “b4552 fatiguability” should be included in the ICF RA Core Set to fully cover the concept of fatigue as experienced by the patients.

The categories “d8700 personal economic resources” and “e1650 financial assets” emerged from the interviews and are not included in the current version of the ICF RA Core Set. Economic consequences in relation to the loss of paid work due to physical disability were also found to be important issues to patients with RA in the literature (3–6).

Some additional categories were interpreted to be related to side effects. The patients explicitly assigned some categories from the ICF component body functions to side effects of medication, such as “b1400 sustaining attention,” “b5106 regurgitation and vomiting,” and “b5252 frequency of defecation.” This information provided by the patients was documented without further valuation. Some of these causal relationships can also be found in the literature. Among the additional categories that emerged from the interviews, “b1263 psychic stability,” “b1400 sustaining attention,” “b820 repair functions of the skin,” and “b840 sensations related to the skin” could be related to side effects of steroids (28); “b5252 frequency of defecation” could be related to gastrointestinal side effects due to nonsteroidal antiinflammatory drugs (29) and disease-modifying antirheumatic drugs (30). This information was attributed by the researchers according to the existing literature. Side effects were only found in the ICF component body functions.

The degree of agreement between health professionals was found to be moderate according to the Kappa coefficient. However, the lower limits of confidence intervals exceed 0.5. Additionally, the calculation of agreement did not only involve the linking of concepts to the ICF, but the whole process of the qualitative analysis that was done by 2 researchers for 15% of the transcribed data. This includes the division of the transcribed interview data into meaning units, the identification of the concepts, and the linking to the ICF, which was all done independently by the 2 researchers. From the qualitative research perspective, the limitation of calculating the Kappa coefficient might still be that it is a quantitative measure.

We conducted interviews to validate the ICF RA Core Set from the patient perspective. In our study, interviews were chosen to explore the life context of the patients. Frequently, the patients reported specific problems from their own life context by giving specific examples. These specific examples may represent their individual perspective, compared with a more general perspective of the experts. For example, for the second-level category “d445 hand and arm use,” the following 4 specifications were documented: opening a milk package, using a coffee machine, using one's hand while sailing, and using hand and arm to lean on something. The specifications were not presented in this study, but an additional analysis would be highly valuable. Patients thus may find their individual problems not always acknowledged, but nevertheless a more general category or component might be covered. On the other hand, experts might have in mind the typical or general patient, whereas patients focus on their own individual problems in everyday life.

Most difficult to understand for the patients were the technical terms in the ICF component environmental factors, for example Chapter 1: products and technology. This could be a limitation of interview type 2 in which patients were presented the titles and terms of the ICF chapters instead of the open questions in interview type 1. Problems with the ICF terms thus only turned up in type-2 interviews. However, 26 ICF categories emerged in the type-2 interviews, compared with 15 in the type-1 interviews. It might have been important to present the ICF chapters to the patients—as it was done in the type-2 interviews—to facilitate that the patients would talk about their problems in daily life. However, saturation was reached after 8 interviews in the type-2 interviews, compared with 13 in the type-1 interviews. However, a limitation of the type-2 interviews might have been that the questions related closely to the ICF terms. In contrast, the open-ended questions in type-1 interviews facilitated that the patients focused on their life experiences and revealed concepts not covered by the ICF.

However, some patients were able to clearly follow the ICF terminology of all chapters during the type-2 interviews. These patients related problems in their daily life to either problems in body functions and structures, activities and participation, or environmental factors. They were able to identify causes and effects according to the ICF model that they were presented prior to the interview. Patient N identified problems with her teeth and related that to a change in the body structure teeth (“s3200 teeth”) with a temporal relation to RA, as well as to her decreased ability to care for the teeth because brushing her teeth caused pain in her hands (“d5201 caring for teeth”). Further in the interview, she reported another cause for her teeth problems: frequent vomiting and nausea, which were side effects from the drugs she had to take (“b1506 regurgitation and vomiting”), increased during brushing of her teeth; therefore, she had to terminate teeth brushing.

Among the personal factors, “lying as a strategy to deal with RA” emerged from one interview. The patient had to lie that she did not have a chronic disease to reach her personal goals. She wanted to become and work as a nurse. She had to lie to the nursing school she applied to and later had to lie to her employer to get a job as a nurse. This person also indicated that the employer's policy was an important issue to be considered. In her employer's organization it was not possible for her to ask other employees or her boss for help when she, for example, had to handle and carry heavy objects or when she had to walk long distances. Thus, the organizational policy of her employer is a barrier for her in her work environment.

Our study followed a qualitative methodology. Problems of all participants were treated as equally important without implying a quantitative perspective, such as frequencies or increasing importance if an issue was mentioned more often. In qualitative research, sample sizes typically remain small because intensive data analysis is required. However, this aspect allowed us to include and explore individual perspectives of patients in the validation of the ICF RA Core Set. Further research from an epidemiologic perspective is suggested with the aim to test out the frequency and importance of the issues that were identified as problematic and relevant areas to patients with RA in our qualitative study. A limitation of our study is that the sample included only patients from Austria, although patients were from different sex and age groups and professional backgrounds. Additional studies with patients from other cultures are suggested that could use the same methodology as the present study.

From a methodologic perspective, this study may serve as a model for further validation studies and ongoing development of other ICF Core Sets in other countries and in other diseases.

In this qualitative study, the validity of the ICF RA Core Set was supported by the perspective of individual patients. However, some additional issues raised in this study but not covered in the current ICF RA Core Set need to be investigated.

Acknowledgements

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. METHODS
  5. RESULTS
  6. DISCUSSION
  7. Acknowledgements
  8. REFERENCES

We thank Mrs. Sieglinde Stamm for transcribing the interviews and for her interest in this project. We thank all patients who participated in the study. We also thank the European League Against Rheumatism ICF Core Set scientific advisory group, consisting of Annelies Boonen, Alarcos Cieza, Valerie Nell, Tanja A. Stamm, Gerold Stucki, and Till Uhilg.

REFERENCES

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. METHODS
  5. RESULTS
  6. DISCUSSION
  7. Acknowledgements
  8. REFERENCES
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