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Validation of the Comprehensive ICF Core Set for rheumatoid arthritis: The perspective of psychologists a
a
Inge Kirchberger , Alarcos Cieza & Gerold Stucki
a b
a
ICF Research Branch of the WHO CC FIC (DIMDI) , Institute for Health and Rehabilitation Sciences, Ludwig-Maximilian University , Marchioninistrasse 17, D-81377 Munich, Germany b
Department of Physical Medicine and Rehabilitation , LudwigMaximilian University , Marchioninistrasse 15, D-81377 Munich, Germany Published online: 11 Jul 2008.
To cite this article: Inge Kirchberger , Alarcos Cieza & Gerold Stucki (2008) Validation of the Comprehensive ICF Core Set for rheumatoid arthritis: The perspective of psychologists, Psychology & Health, 23:6, 639-659, DOI: 10.1080/14768320701244076 To link to this article: http://dx.doi.org/10.1080/14768320701244076
PLEASE SCROLL DOWN FOR ARTICLE Taylor & Francis makes every effort to ensure the accuracy of all the information (the “Content”) contained in the publications on our platform. However, Taylor & Francis, our agents, and our licensors make no representations or warranties whatsoever as to the accuracy, completeness, or suitability for any purpose of the Content. Any opinions and views expressed in this publication are the opinions and views of the authors, and are not the views of or endorsed by Taylor & Francis. The accuracy of the Content should not be relied upon and should be independently verified with primary sources of information. Taylor and Francis shall not be liable for any losses, actions, claims, proceedings, demands, costs, expenses, damages, and other liabilities whatsoever or howsoever caused arising directly or indirectly in connection with, in relation to or arising out of the use of the Content. This article may be used for research, teaching, and private study purposes. Any substantial or systematic reproduction, redistribution, reselling, loan, sub-licensing, systematic supply, or distribution in any form to anyone is expressly forbidden. Terms &
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Psychology and Health August 2008; 23(6): 639–659
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Validation of the Comprehensive ICF Core Set for rheumatoid arthritis: The perspective of psychologists INGE KIRCHBERGER1, ALARCOS CIEZA1, & GEROLD STUCKI1,2 1
ICF Research Branch of the WHO CC FIC (DIMDI), Institute for Health and Rehabilitation Sciences, Ludwig-Maximilian University, Marchioninistrasse 17, D-81377 Munich, Germany and 2Department of Physical Medicine and Rehabilitation, Ludwig-Maximilian University, Marchioninistrasse 15, D-81377 Munich, Germany (Received 10 February 2006; in final form 26 January 2007) Abstract The ‘Comprehensive ICF Core Set for rheumatoid arthritis (RA)’ is an application of the International Classification of Functioning, Disability and Health (ICF) and represents the typical spectrum of problems in functioning of patients with RA. The objective of this study was to validate this ICF Core Set from the perspective of psychologists. Psychologists experienced in RA treatment were asked about the problems of RA patients, treated by psychologists, in a three-round survey using the Delphi technique. Responses were linked to the ICF. Twenty psychologists in five countries gave a total of 303 responses that were linked to 65 different ICF categories. Fifteen responses were linked to the not yet developed ICF component personal factors and nine were not covered by ICF. Overall, 66% of the ICF categories linked to the responses of the psychologists were represented by the Comprehensive ICF Core Set for RA. Several responses that were not covered need to be investigated further.
Keywords: International Classification of Functioning, Disability and Health, rehabilitation, rheumatoid arthritis, Delphi method
Correspondence: Gerold Stucki, ICF Research Branch of the WHO CC FIC (DIMDI), Institute for Health and Rehabilitation Sciences, Ludwig-Maximilian University, Marchioninistrasse 17, D-81377 Munich, Germany. Tel.: þþ49-89-7095-4051. Fax: þþ49-89-7095-8836. E-mail: [email protected] ISSN 0887-0446 print/ISSN 1476-8321 online ß 2008 Taylor & Francis DOI: 10.1080/14768320701244076
640 I. Kirchberger et al.
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Introduction Rheumatoid arthritis (RA) is associated with impairments in functions and body structures including pain, joint stiffness, joint swelling, reduced range of motion, loss of muscle strength, and joint damage (Eberhardt & Fex, 1995; Ekdahl & Broman, 1992). Such impairments often lead to limitations of physical activities and restrictions in daily activities and societal participation including paid work (Katz, 1995; Lindquist, Saxne, Geborek, & Eberhardt, 2002; Stamm et al., 2004; Stucki, Bru¨hlmann, Stucki, & Michel, 1998; Van Jaarsveld et al., 1998; Verstappen et al., 2004). Moreover, RA is associated with psychological problems including lack of perceived control, feelings of anxiety, depression, and helplessness. Anxiety and depressive disorders occur in 20–25% of patients with RA (Creed, 1990) and a meta-analysis demonstrated that depression is more prevalent in patients with RA than in healthy controls (Dickens, McGowan, Clark-Carter, & Creed, 2002). Both functional disability and psychological status have been found to be predicted by various personal factors, including coping, self-efficacy, self-esteem, beliefs, and attitudes as well as factors of the patients’ environment, e.g., social support (Beckham, Rice, & Talton, 1994; Demange et al., 2004; Evers, Kraaimat, Geenen, Jacobs, & Bijlsma, 2003; Groarke, Curtis, Coughlan, & Gsel, 2005; Keefe, Brown, Wallston, & Cladwell, 1989; Nagyova, Stewart, Macejova, Van Dijk, & Van den Heuvel, 2005; Neugebauer & Katz, 2004). In general, within an interdisciplinary rehabilitation team, psychologists will address the previously mentioned aspects associated with RA. Psychological interventions for RA typically include some combination of education about the illness, relaxation training, bio-feedback therapy, attention diversion training, problem-solving, cognitive restructuring, assertiveness, and communication training and management of high-risk situations (Astin, Beckner, Soeken, Hochberg, & Berman, 2002; Newman, Steed, & Mulligan, 2004; Sharpe, Sensky, Timberlake, Ryan, & Allard, 2003). There is considerable evidence to suggest that patient education program and cognitive-behavioral interventions are effective in reducing pain and functional disability and improving psychological status, coping, and self-efficacy (Astin et al., 2002; Barlow, Turner, & Wright, 1998; Lorig & Holman, 1993; Riemsma, Kirwan, Taal, & Rasker, 2004; Sharpe et al., 2001, 2003; Taal et al., 1993). To optimize interventions aimed at maintaining functioning and minimizing disability, a proper understanding of the patients’ functioning is needed (Stucki, Ewert, & Cieza, 2003). The World Health Organization International Classification of Functioning, Disability and Health (ICF) provides a useful framework for classifying the components of health and consequences of a disease. It aims at providing a unified language for the description of health conditions in rehabilitation and a common framework for all health professions (World Health Organization, 2001). According to the ICF, the consequences of a disease may concern body functions and structures, the performance of activities and participation in life situations. Health states and the development
ICF Core Set for rheumatoid arthritis from the perspective of psychologists
Classification
ICF
Functioning and Disability
Body functions and structures
Activities and participation
641
Parts
Contextual factors
Environmental factors
Personal factors
Components
Not classified
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Categories b1–b8
s1–s8
d1–d9
e1–e5
b110– b899
s110– s899
d110– d999
e110– e599
b1100– b7809
s1100– s8309
d1550– d9309
e1100– e5959
b11420– b54509
s11000– s76009
Figure 1.
1st level (chapters)
2nd level
3rd level
4th level
Structure of the International Classification of Functioning, Disability and Health.
of disability are modified by contextual factors such as environmental and personal factors (World Health Organization, 2001). The ICF is structured into two parts – (a) functioning and disability and (b) contextual factors – each of which has two components (Figure 1). Within functioning and disability, the body part consists of two domains, body functions and body structures. Chapters within these two domains are organized according to body systems. The component ‘activities and participation’ covers domains of functioning from both an individual and societal perspective. In contrast to other disability models, the ICF classifies contextual factors that may either facilitate or hinder functioning and therefore affect the development of disability. These contextual factors consist of two components. The first is environmental factors that include factors in the physical, social, or attitudinal world. The second component is personal factors that include gender, age, habits, lifestyle, coping style, etc., but is not currently classified. Within the three components body functions and structures, activities and participation, and environmental factors, all items in the classification are arranged hierarchically (Figure 1). The magnitude of the level of health (e.g., severity of the problem) is denoted for each category by a qualifier according to a 5-level scale ranging from ‘no problem’ to ‘severe problem.’ Both the content and the structure of the ICF point out their potential value for psychologists, especially rehabilitation psychologists. The concepts and assumptions that comprise the ICF reflect the values espoused by rehabilitation psychologists: the dignity and worth of all people, inclusion of people with
Downloaded by [University of North Texas] at 17:55 27 November 2014
642 I. Kirchberger et al. disabilities in society to the fullest extent possible, and the critical role of a comprehensive assessment of the individual’s total functioning, in addition to more traditional health-related diagnostic information (Bruyere & Peterson, 2005; Frank & Elliot, 2000; Riggar & Maki, 2004). The ICF has the potential to contribute to rehabilitation psychology research, program evaluation, clinical intervention, and social policy development (Peterson, 2005). Since the common language of the ICF crosses professions and health disciplines, ICF data can be communicated effectively between the members of rehabilitation teams. Furthermore, the application of the ICF will be valuable for the standardization of rehabilitation research data around the world. Despite its supposed value, the ICF classification as a whole – including more than 1400 categories – is not feasible for use in clinical practice. In order to facilitate the implementation of the ICF into clinical practice, ICF Core Sets for a number of health conditions including RA (Stucki et al., 2004), have been ¨ stun, Chatterji, & developed (Cieza et al., 2004; Stucki & Grimby, 2004; U Kostanjsek, 2004). The Comprehensive ICF Core Set for RA includes a set of categories out of the whole ICF classification, which covers the typical spectrum of problems in functioning in patients with RA (Cieza et al., 2004; Stucki & Grimby, 2004; ¨ stun et al., 2004). It was developed in a formal decision-making and consensus U process integrating evidence gathered from preliminary studies by experts consisting of rheumatology health professionals (Brockow et al., 2004; Ewert et al., 2004; Stucki & Grimby, 2004; Weigl et al., 2004). The Comprehensive ICF Core Set for RA is now undergoing worldwide testing and validation using a number of approaches including international multi-centre field studies and validation from the patient’s perspective. One key aspect is the validation from the user’s perspective for whom the Comprehensive ICF Core Sets have been developed at the first place. Since not all health professions were involved in the decision-making and consensus process, it is necessary to evaluate whether their perspective has sufficiently been considered. Since ICF Core Sets should serve as a standard for multi-professional assessment and assessment in clinical trials, it is most important whether the categories included in the Comprehensive ICF Core Sets cover the patient’s problems addressed by the specific interventions of health professionals. Therefore, the objective of this study was to validate the Comprehensive ICF Core Set for RA from the perspective of psychologists. The specific aims were firstly, to identify the patients’ problems, resources, and aspects of environment treated by psychologists in patients with RA and secondly, to examine how these aspects are represented by the current version of the Comprehensive ICF Core Set for RA. Methods We conducted a three-round electronic-mail survey of psychologists using the Delphi technique (Duffield, 1993; Goodman, 1987; Linstone & Turoff, 1975).
ICF Core Set for rheumatoid arthritis from the perspective of psychologists
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The Delphi technique aims to gain consensus from a panel of individuals, who have knowledge of the topic being investigated (McKenna, 1994). These informed persons are commonly titled ‘experts’. The Delphi method is a multistage process where each stage builds on the results of the previous one and a series of rounds are used to both gather and provide information about a particular subject. The technique is characterized by its anonymity, thus avoiding group dominance; iteration which allows panel members to change their opinions in subsequent rounds; and controlled feedback showing the distribution of the group’s response as well as the individual’s previous response ( Jones & Hunter, 1995). Recruitment of participants In the preparatory phase of the study, associations of psychologists, especially pain and rehabilitation psychologists, as well as the Association of Rheumatology Health Professionals were contacted. In addition, literature search and personal recommendations were used to identify experts. A register of German Rheumatology hospitals was used to get in contact with German experts. The sample was selected using a purposive sampling approach. Purposive sampling is based on the assumption that a researcher’s knowledge about the population can be used to handpick the cases to be included in the sample (Polit & Hungler, 1997). To ensure that the participants of the study are informed individuals concerning RA treatment, the initial letter notes that participants should be psychologists experienced in the treatment of RA. The first contact included an invitation to co-operate and a detailed description of the project’s targets, the Delphi process and the timeline. Only persons who agreed to participate were included into the expert sample and received the questionnaire of the first Delphi round. Delphi process The process and verbatim questions of the electronic-mail survey using the Delphi technique are displayed in Figure 2. The participants had three weeks to mail their responses for each round. Reminders were sent one week and two days before the deadline. In round 1 of the Delphi exercise, an informational letter including instructions and an excel file containing an open-ended questionnaire, was sent to all experts. In the questionnaire, the participants were requested to list all the patients’ problems, patients’ resources and aspects of environment treated by psychologists in patients with RA. Additionally, the participants were asked to complete questions on demographic characteristics and professional experience. Responses were collected and linked to the ICF. In the second Delphi round, the participants received a list of the ICF categories linked to the responses of the first round. The categories were ordered according to the structure of the ICF. The responses that could not be linked
644 I. Kirchberger et al.
Round 1
Question: What are the patients’ problems, patients’ resources and aspects of environment treated by psychologists in patients with RA? – Linking of answers to ICF – Feedback of ICF categories (code, title, description of content)
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Round 2
Question: Do you agree that this ICF category represents patients’ problems, patients’ resources or aspects of the environment treated by psychologists in patients with RA? – Calculation of frequencies – Feedback of individual and group answer
Round 3
Figure 2.
Question: Taking into account the answer of the group and your individual answer in the second round, do you agree that this ICF category represents patients’ problems, patients’ resources or aspects of the environment treated by psychologists in patients with RA?
Description of the Delphi exercise.
to an existing ICF category were categorized by the research team and listed. The participants were requested to agree or disagree whether the respective ICF category represents patients’ problems, patients’ resources or aspects of environment treated by psychologists in patients with RA. In the third Delphi round, the participants received a list of the ICF categories including the proportion and the identification numbers of the participants who did agree that the categories represent patients’ problems, patients’ resources or aspects of environment treated by psychologists in patients with RA. The participants were requested to answer the same question taking into account the responses of the group as well as their previous response. Linking An ICF category is coded by the component letter and a suffix of one to five digits. The letters b, s, d, and e refer to the components body functions (b), body structures (s), activities and participation (d), and environmental factors (e) (Figure 1). This letter is followed by a one-digit number indicating the chapter, the code for the second level (two digits) and the third and fourth levels (one digit each). A higher-level (more detailed) category shares the lower-level categories of which it is the member, i.e., the use of a higher-level category implies that the lower-level category is applicable, but not the other way round. Each response of the first Delphi round was linked to the most precise ICF category. The linkage was performed separately by two trained psychologists
ICF Core Set for rheumatoid arthritis from the perspective of psychologists
645
on the basis of ten linking rules, established in former studies (Cieza et al., 2002). If a response contains more than one concept, several ICF categories could be linked. Consensus between the psychologists was used to decide which ICF category should be linked to each response. In case of disagreements between the two psychologists, the suggested categories were discussed by a team consisting of three psychologists. Based on this discussion, a joint decision was made.
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Statistical methods Statistical analysis was performed using SAS for windows V8. Descriptive statistics were used to characterize the sample and frequencies of responses. To analyze group differences, 2-test or Fishers exact test were applied for nominal variables and Mann–Whitney-U-test for ordinal variables. The level of significance was set to 0.05. Kappa statistics with bootstrapped confidence intervals were used to describe the agreement between the two psychologists, who performed the linking (Cohen, 1960; Vierkant, 2004).
Results Recruitment and participants Associations of pain psychologists named eight experts, and three participated in the first round of the Delphi process. Of the Association of Rheumatology Health Professionals, 18 members were invited to participate. Two agreed and one participated in the first round of the study. By literature search, seven additional experts that participated in the study were contacted. On the basis of personal recommendations of other participants (‘snowball system’) 15 persons were contacted. Five of them agreed to participate and four finally participated in the first round of the Delphi process. Eight psychologists of German Rheumatology Hospitals were contacted and three of them participated in the first Delphi round. Twenty of 28 psychologists (71.4%) who agreed to participate in the study filled in the first round questionnaire. The demographic and professional characteristics of the experts are shown in Table I. One-half of the participants (50.0%) were German. The German participants did not significantly differ from the other participants with respect to demographic and professional characteristics. No significant changes of demographic sample characteristics due to attrition of participants between the three Delphi rounds could be found. Delphi process In the first Delphi round, 303 patients’ problems, patients’ resources or aspects of environment treated by psychologists in patients with RA were named. Out of 20 participants, 17 (85.0%) returned the second-round questionnaire. The third-round questionnaire was completed by 16 of 17 (94.1%) participants. Tables II and III summarize the results of round 3. Detailed information including the percentage of agreement is presented in Tables IV–VIII.
20
Total
17
1 9 1 4c 2
Round 2 (n)
16
b
1 9 1 4 1
Round 3 (n)
1 ¼ low, 5 ¼ excellent. Data of one participant. c One participant did not participate in round 1. d Data of one participant missing.
a
2 10 2 3 3
Australia Germany Great Britain Netherlands USA
Country
Round 1 (n)
45.0
100.0 40.0 50.0 33.3 33.3
Female (%)
52.0 (27–61)
32.0 (27–37) 54.5 (37–60) missing 49.0 (38–61) 55.0 (45–57)
Age median (min–max)
20.0 (3–35)
9.0 (3–15) 25.0 (6–33) 15.0b 17.0 (9–35) 29.0 (15–30)
Professional experience (years) median (min–max)
15.0 (0.4–27)
8.0 (1–15) 17.5 (3–27) 15.0b 7.0 (0.4–20) 20.0 (3–25)
RA experience (years) median (min–max)
4 (2–5)
4.5 (4–5) 3.5 (2–4) 3b 4.5d (4–5) 5 (3–5)
Self-rating RA expertisea median (min–max)
Table I. Attrition of participants between the Delphi rounds, and demographics and professional experience of the round 1 participants.
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646 I. Kirchberger et al.
ICF Core Set for rheumatoid arthritis from the perspective of psychologists
647
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Table II. Representation of identified ICF categories in the Comprehensive ICF Core Sets for RA: summary of results.
Number of categories identified n (%) of categories included in the ICF Core Set at the same level of classificationa n (%) of categories included in the ICF Core Set at a different level of the classificationa n (%) of categories not included in Core Set with agreement
Psychology & Health Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/gpsh20
Validation of the Comprehensive ICF Core Set for rheumatoid arthritis: The perspective of psychologists a
a
Inge Kirchberger , Alarcos Cieza & Gerold Stucki
a b
a
ICF Research Branch of the WHO CC FIC (DIMDI) , Institute for Health and Rehabilitation Sciences, Ludwig-Maximilian University , Marchioninistrasse 17, D-81377 Munich, Germany b
Department of Physical Medicine and Rehabilitation , LudwigMaximilian University , Marchioninistrasse 15, D-81377 Munich, Germany Published online: 11 Jul 2008.
To cite this article: Inge Kirchberger , Alarcos Cieza & Gerold Stucki (2008) Validation of the Comprehensive ICF Core Set for rheumatoid arthritis: The perspective of psychologists, Psychology & Health, 23:6, 639-659, DOI: 10.1080/14768320701244076 To link to this article: http://dx.doi.org/10.1080/14768320701244076
PLEASE SCROLL DOWN FOR ARTICLE Taylor & Francis makes every effort to ensure the accuracy of all the information (the “Content”) contained in the publications on our platform. However, Taylor & Francis, our agents, and our licensors make no representations or warranties whatsoever as to the accuracy, completeness, or suitability for any purpose of the Content. Any opinions and views expressed in this publication are the opinions and views of the authors, and are not the views of or endorsed by Taylor & Francis. The accuracy of the Content should not be relied upon and should be independently verified with primary sources of information. Taylor and Francis shall not be liable for any losses, actions, claims, proceedings, demands, costs, expenses, damages, and other liabilities whatsoever or howsoever caused arising directly or indirectly in connection with, in relation to or arising out of the use of the Content. This article may be used for research, teaching, and private study purposes. Any substantial or systematic reproduction, redistribution, reselling, loan, sub-licensing, systematic supply, or distribution in any form to anyone is expressly forbidden. Terms &
Downloaded by [University of North Texas] at 17:55 27 November 2014
Conditions of access and use can be found at http://www.tandfonline.com/page/termsand-conditions
Psychology and Health August 2008; 23(6): 639–659
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Validation of the Comprehensive ICF Core Set for rheumatoid arthritis: The perspective of psychologists INGE KIRCHBERGER1, ALARCOS CIEZA1, & GEROLD STUCKI1,2 1
ICF Research Branch of the WHO CC FIC (DIMDI), Institute for Health and Rehabilitation Sciences, Ludwig-Maximilian University, Marchioninistrasse 17, D-81377 Munich, Germany and 2Department of Physical Medicine and Rehabilitation, Ludwig-Maximilian University, Marchioninistrasse 15, D-81377 Munich, Germany (Received 10 February 2006; in final form 26 January 2007) Abstract The ‘Comprehensive ICF Core Set for rheumatoid arthritis (RA)’ is an application of the International Classification of Functioning, Disability and Health (ICF) and represents the typical spectrum of problems in functioning of patients with RA. The objective of this study was to validate this ICF Core Set from the perspective of psychologists. Psychologists experienced in RA treatment were asked about the problems of RA patients, treated by psychologists, in a three-round survey using the Delphi technique. Responses were linked to the ICF. Twenty psychologists in five countries gave a total of 303 responses that were linked to 65 different ICF categories. Fifteen responses were linked to the not yet developed ICF component personal factors and nine were not covered by ICF. Overall, 66% of the ICF categories linked to the responses of the psychologists were represented by the Comprehensive ICF Core Set for RA. Several responses that were not covered need to be investigated further.
Keywords: International Classification of Functioning, Disability and Health, rehabilitation, rheumatoid arthritis, Delphi method
Correspondence: Gerold Stucki, ICF Research Branch of the WHO CC FIC (DIMDI), Institute for Health and Rehabilitation Sciences, Ludwig-Maximilian University, Marchioninistrasse 17, D-81377 Munich, Germany. Tel.: þþ49-89-7095-4051. Fax: þþ49-89-7095-8836. E-mail: [email protected] ISSN 0887-0446 print/ISSN 1476-8321 online ß 2008 Taylor & Francis DOI: 10.1080/14768320701244076
640 I. Kirchberger et al.
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Introduction Rheumatoid arthritis (RA) is associated with impairments in functions and body structures including pain, joint stiffness, joint swelling, reduced range of motion, loss of muscle strength, and joint damage (Eberhardt & Fex, 1995; Ekdahl & Broman, 1992). Such impairments often lead to limitations of physical activities and restrictions in daily activities and societal participation including paid work (Katz, 1995; Lindquist, Saxne, Geborek, & Eberhardt, 2002; Stamm et al., 2004; Stucki, Bru¨hlmann, Stucki, & Michel, 1998; Van Jaarsveld et al., 1998; Verstappen et al., 2004). Moreover, RA is associated with psychological problems including lack of perceived control, feelings of anxiety, depression, and helplessness. Anxiety and depressive disorders occur in 20–25% of patients with RA (Creed, 1990) and a meta-analysis demonstrated that depression is more prevalent in patients with RA than in healthy controls (Dickens, McGowan, Clark-Carter, & Creed, 2002). Both functional disability and psychological status have been found to be predicted by various personal factors, including coping, self-efficacy, self-esteem, beliefs, and attitudes as well as factors of the patients’ environment, e.g., social support (Beckham, Rice, & Talton, 1994; Demange et al., 2004; Evers, Kraaimat, Geenen, Jacobs, & Bijlsma, 2003; Groarke, Curtis, Coughlan, & Gsel, 2005; Keefe, Brown, Wallston, & Cladwell, 1989; Nagyova, Stewart, Macejova, Van Dijk, & Van den Heuvel, 2005; Neugebauer & Katz, 2004). In general, within an interdisciplinary rehabilitation team, psychologists will address the previously mentioned aspects associated with RA. Psychological interventions for RA typically include some combination of education about the illness, relaxation training, bio-feedback therapy, attention diversion training, problem-solving, cognitive restructuring, assertiveness, and communication training and management of high-risk situations (Astin, Beckner, Soeken, Hochberg, & Berman, 2002; Newman, Steed, & Mulligan, 2004; Sharpe, Sensky, Timberlake, Ryan, & Allard, 2003). There is considerable evidence to suggest that patient education program and cognitive-behavioral interventions are effective in reducing pain and functional disability and improving psychological status, coping, and self-efficacy (Astin et al., 2002; Barlow, Turner, & Wright, 1998; Lorig & Holman, 1993; Riemsma, Kirwan, Taal, & Rasker, 2004; Sharpe et al., 2001, 2003; Taal et al., 1993). To optimize interventions aimed at maintaining functioning and minimizing disability, a proper understanding of the patients’ functioning is needed (Stucki, Ewert, & Cieza, 2003). The World Health Organization International Classification of Functioning, Disability and Health (ICF) provides a useful framework for classifying the components of health and consequences of a disease. It aims at providing a unified language for the description of health conditions in rehabilitation and a common framework for all health professions (World Health Organization, 2001). According to the ICF, the consequences of a disease may concern body functions and structures, the performance of activities and participation in life situations. Health states and the development
ICF Core Set for rheumatoid arthritis from the perspective of psychologists
Classification
ICF
Functioning and Disability
Body functions and structures
Activities and participation
641
Parts
Contextual factors
Environmental factors
Personal factors
Components
Not classified
Downloaded by [University of North Texas] at 17:55 27 November 2014
Categories b1–b8
s1–s8
d1–d9
e1–e5
b110– b899
s110– s899
d110– d999
e110– e599
b1100– b7809
s1100– s8309
d1550– d9309
e1100– e5959
b11420– b54509
s11000– s76009
Figure 1.
1st level (chapters)
2nd level
3rd level
4th level
Structure of the International Classification of Functioning, Disability and Health.
of disability are modified by contextual factors such as environmental and personal factors (World Health Organization, 2001). The ICF is structured into two parts – (a) functioning and disability and (b) contextual factors – each of which has two components (Figure 1). Within functioning and disability, the body part consists of two domains, body functions and body structures. Chapters within these two domains are organized according to body systems. The component ‘activities and participation’ covers domains of functioning from both an individual and societal perspective. In contrast to other disability models, the ICF classifies contextual factors that may either facilitate or hinder functioning and therefore affect the development of disability. These contextual factors consist of two components. The first is environmental factors that include factors in the physical, social, or attitudinal world. The second component is personal factors that include gender, age, habits, lifestyle, coping style, etc., but is not currently classified. Within the three components body functions and structures, activities and participation, and environmental factors, all items in the classification are arranged hierarchically (Figure 1). The magnitude of the level of health (e.g., severity of the problem) is denoted for each category by a qualifier according to a 5-level scale ranging from ‘no problem’ to ‘severe problem.’ Both the content and the structure of the ICF point out their potential value for psychologists, especially rehabilitation psychologists. The concepts and assumptions that comprise the ICF reflect the values espoused by rehabilitation psychologists: the dignity and worth of all people, inclusion of people with
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642 I. Kirchberger et al. disabilities in society to the fullest extent possible, and the critical role of a comprehensive assessment of the individual’s total functioning, in addition to more traditional health-related diagnostic information (Bruyere & Peterson, 2005; Frank & Elliot, 2000; Riggar & Maki, 2004). The ICF has the potential to contribute to rehabilitation psychology research, program evaluation, clinical intervention, and social policy development (Peterson, 2005). Since the common language of the ICF crosses professions and health disciplines, ICF data can be communicated effectively between the members of rehabilitation teams. Furthermore, the application of the ICF will be valuable for the standardization of rehabilitation research data around the world. Despite its supposed value, the ICF classification as a whole – including more than 1400 categories – is not feasible for use in clinical practice. In order to facilitate the implementation of the ICF into clinical practice, ICF Core Sets for a number of health conditions including RA (Stucki et al., 2004), have been ¨ stun, Chatterji, & developed (Cieza et al., 2004; Stucki & Grimby, 2004; U Kostanjsek, 2004). The Comprehensive ICF Core Set for RA includes a set of categories out of the whole ICF classification, which covers the typical spectrum of problems in functioning in patients with RA (Cieza et al., 2004; Stucki & Grimby, 2004; ¨ stun et al., 2004). It was developed in a formal decision-making and consensus U process integrating evidence gathered from preliminary studies by experts consisting of rheumatology health professionals (Brockow et al., 2004; Ewert et al., 2004; Stucki & Grimby, 2004; Weigl et al., 2004). The Comprehensive ICF Core Set for RA is now undergoing worldwide testing and validation using a number of approaches including international multi-centre field studies and validation from the patient’s perspective. One key aspect is the validation from the user’s perspective for whom the Comprehensive ICF Core Sets have been developed at the first place. Since not all health professions were involved in the decision-making and consensus process, it is necessary to evaluate whether their perspective has sufficiently been considered. Since ICF Core Sets should serve as a standard for multi-professional assessment and assessment in clinical trials, it is most important whether the categories included in the Comprehensive ICF Core Sets cover the patient’s problems addressed by the specific interventions of health professionals. Therefore, the objective of this study was to validate the Comprehensive ICF Core Set for RA from the perspective of psychologists. The specific aims were firstly, to identify the patients’ problems, resources, and aspects of environment treated by psychologists in patients with RA and secondly, to examine how these aspects are represented by the current version of the Comprehensive ICF Core Set for RA. Methods We conducted a three-round electronic-mail survey of psychologists using the Delphi technique (Duffield, 1993; Goodman, 1987; Linstone & Turoff, 1975).
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The Delphi technique aims to gain consensus from a panel of individuals, who have knowledge of the topic being investigated (McKenna, 1994). These informed persons are commonly titled ‘experts’. The Delphi method is a multistage process where each stage builds on the results of the previous one and a series of rounds are used to both gather and provide information about a particular subject. The technique is characterized by its anonymity, thus avoiding group dominance; iteration which allows panel members to change their opinions in subsequent rounds; and controlled feedback showing the distribution of the group’s response as well as the individual’s previous response ( Jones & Hunter, 1995). Recruitment of participants In the preparatory phase of the study, associations of psychologists, especially pain and rehabilitation psychologists, as well as the Association of Rheumatology Health Professionals were contacted. In addition, literature search and personal recommendations were used to identify experts. A register of German Rheumatology hospitals was used to get in contact with German experts. The sample was selected using a purposive sampling approach. Purposive sampling is based on the assumption that a researcher’s knowledge about the population can be used to handpick the cases to be included in the sample (Polit & Hungler, 1997). To ensure that the participants of the study are informed individuals concerning RA treatment, the initial letter notes that participants should be psychologists experienced in the treatment of RA. The first contact included an invitation to co-operate and a detailed description of the project’s targets, the Delphi process and the timeline. Only persons who agreed to participate were included into the expert sample and received the questionnaire of the first Delphi round. Delphi process The process and verbatim questions of the electronic-mail survey using the Delphi technique are displayed in Figure 2. The participants had three weeks to mail their responses for each round. Reminders were sent one week and two days before the deadline. In round 1 of the Delphi exercise, an informational letter including instructions and an excel file containing an open-ended questionnaire, was sent to all experts. In the questionnaire, the participants were requested to list all the patients’ problems, patients’ resources and aspects of environment treated by psychologists in patients with RA. Additionally, the participants were asked to complete questions on demographic characteristics and professional experience. Responses were collected and linked to the ICF. In the second Delphi round, the participants received a list of the ICF categories linked to the responses of the first round. The categories were ordered according to the structure of the ICF. The responses that could not be linked
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Round 1
Question: What are the patients’ problems, patients’ resources and aspects of environment treated by psychologists in patients with RA? – Linking of answers to ICF – Feedback of ICF categories (code, title, description of content)
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Round 2
Question: Do you agree that this ICF category represents patients’ problems, patients’ resources or aspects of the environment treated by psychologists in patients with RA? – Calculation of frequencies – Feedback of individual and group answer
Round 3
Figure 2.
Question: Taking into account the answer of the group and your individual answer in the second round, do you agree that this ICF category represents patients’ problems, patients’ resources or aspects of the environment treated by psychologists in patients with RA?
Description of the Delphi exercise.
to an existing ICF category were categorized by the research team and listed. The participants were requested to agree or disagree whether the respective ICF category represents patients’ problems, patients’ resources or aspects of environment treated by psychologists in patients with RA. In the third Delphi round, the participants received a list of the ICF categories including the proportion and the identification numbers of the participants who did agree that the categories represent patients’ problems, patients’ resources or aspects of environment treated by psychologists in patients with RA. The participants were requested to answer the same question taking into account the responses of the group as well as their previous response. Linking An ICF category is coded by the component letter and a suffix of one to five digits. The letters b, s, d, and e refer to the components body functions (b), body structures (s), activities and participation (d), and environmental factors (e) (Figure 1). This letter is followed by a one-digit number indicating the chapter, the code for the second level (two digits) and the third and fourth levels (one digit each). A higher-level (more detailed) category shares the lower-level categories of which it is the member, i.e., the use of a higher-level category implies that the lower-level category is applicable, but not the other way round. Each response of the first Delphi round was linked to the most precise ICF category. The linkage was performed separately by two trained psychologists
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on the basis of ten linking rules, established in former studies (Cieza et al., 2002). If a response contains more than one concept, several ICF categories could be linked. Consensus between the psychologists was used to decide which ICF category should be linked to each response. In case of disagreements between the two psychologists, the suggested categories were discussed by a team consisting of three psychologists. Based on this discussion, a joint decision was made.
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Statistical methods Statistical analysis was performed using SAS for windows V8. Descriptive statistics were used to characterize the sample and frequencies of responses. To analyze group differences, 2-test or Fishers exact test were applied for nominal variables and Mann–Whitney-U-test for ordinal variables. The level of significance was set to 0.05. Kappa statistics with bootstrapped confidence intervals were used to describe the agreement between the two psychologists, who performed the linking (Cohen, 1960; Vierkant, 2004).
Results Recruitment and participants Associations of pain psychologists named eight experts, and three participated in the first round of the Delphi process. Of the Association of Rheumatology Health Professionals, 18 members were invited to participate. Two agreed and one participated in the first round of the study. By literature search, seven additional experts that participated in the study were contacted. On the basis of personal recommendations of other participants (‘snowball system’) 15 persons were contacted. Five of them agreed to participate and four finally participated in the first round of the Delphi process. Eight psychologists of German Rheumatology Hospitals were contacted and three of them participated in the first Delphi round. Twenty of 28 psychologists (71.4%) who agreed to participate in the study filled in the first round questionnaire. The demographic and professional characteristics of the experts are shown in Table I. One-half of the participants (50.0%) were German. The German participants did not significantly differ from the other participants with respect to demographic and professional characteristics. No significant changes of demographic sample characteristics due to attrition of participants between the three Delphi rounds could be found. Delphi process In the first Delphi round, 303 patients’ problems, patients’ resources or aspects of environment treated by psychologists in patients with RA were named. Out of 20 participants, 17 (85.0%) returned the second-round questionnaire. The third-round questionnaire was completed by 16 of 17 (94.1%) participants. Tables II and III summarize the results of round 3. Detailed information including the percentage of agreement is presented in Tables IV–VIII.
20
Total
17
1 9 1 4c 2
Round 2 (n)
16
b
1 9 1 4 1
Round 3 (n)
1 ¼ low, 5 ¼ excellent. Data of one participant. c One participant did not participate in round 1. d Data of one participant missing.
a
2 10 2 3 3
Australia Germany Great Britain Netherlands USA
Country
Round 1 (n)
45.0
100.0 40.0 50.0 33.3 33.3
Female (%)
52.0 (27–61)
32.0 (27–37) 54.5 (37–60) missing 49.0 (38–61) 55.0 (45–57)
Age median (min–max)
20.0 (3–35)
9.0 (3–15) 25.0 (6–33) 15.0b 17.0 (9–35) 29.0 (15–30)
Professional experience (years) median (min–max)
15.0 (0.4–27)
8.0 (1–15) 17.5 (3–27) 15.0b 7.0 (0.4–20) 20.0 (3–25)
RA experience (years) median (min–max)
4 (2–5)
4.5 (4–5) 3.5 (2–4) 3b 4.5d (4–5) 5 (3–5)
Self-rating RA expertisea median (min–max)
Table I. Attrition of participants between the Delphi rounds, and demographics and professional experience of the round 1 participants.
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Table II. Representation of identified ICF categories in the Comprehensive ICF Core Sets for RA: summary of results.
Number of categories identified n (%) of categories included in the ICF Core Set at the same level of classificationa n (%) of categories included in the ICF Core Set at a different level of the classificationa n (%) of categories not included in Core Set with agreement
