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Keywords:

  • Focus groups;
  • activities of daily living;
  • International Classification of Functioning Disability & Health;
  • patient perspectives

Abstract

  1. Top of page
  2. Abstract
  3. Introduction
  4. Method
  5. Results
  6. Discussion
  7. Conclusion
  8. Acknowledgements
  9. REFERENCES
  10. Appendix

Objective

The aim of the present study was to compare and contrast the concepts of functioning in daily life which were important to patients with different rheumatological conditions.

Method

The study comprised a qualitative analysis of 44 focus groups in eight European countries, in 229 patients with fibromyalgia, hand osteoarthritis, psoriatic arthritis, rheumatoid arthritis, systemic lupus erythematosus and systemic sclerosis, using the World Health Organization, 2001 International Classification of Functioning, Disability and Health as a framework. Concepts and – where necessary – also sub-concepts and transcripts were combined and compared independently by two researchers who, in case of disagreement, achieved consensus through discussion.

Results

Twenty concepts out of 109 (e.g. body image, fatigue, emotional issues, mobility and hand function) were similarly described in all six diseases. However, even if the same concept was mentioned, patients' experiences were different, such as mental AND physical aspects limiting the ability to drive in patients with fibromyalgia compared with ONLY physical problems in all other diseases. Within body functions and structures, several concepts were relevant for certain conditions only.

Conclusion

A large number of similar problems are mentioned as ‘typical’ by patients with different rheumatic conditions. These could probably be targeted, using a disease-specific approach, in interventions by non-physician health professionals. Copyright © 2013 John Wiley & Sons, Ltd.


Introduction

  1. Top of page
  2. Abstract
  3. Introduction
  4. Method
  5. Results
  6. Discussion
  7. Conclusion
  8. Acknowledgements
  9. REFERENCES
  10. Appendix

Patients with rheumatic diseases experience limitations of daily activities and restrictions in participation (Woolf, 2007). The values and perspectives of patients have been found to differ substantially from those of health professionals; consequently, different strategies have been used in the development and selection of outcomes and instruments (Carr et al., 2003; Hewlett, 2003; Kvien and Heiberg, 2003; Kirwan et al., 2011). Several qualitative studies have explored the perspectives, attitudes, views and preferences of those who have experienced various diseases (Coenen et al., 2006; Stamm et al., 2007a, 2007b, 2009, 2011), allowing for a detailed analysis of the perspective of patients with a particular disease. However, there have been no qualitative studies comparing the perspective of patients with different rheumatic diseases.

The World Health Organization, 2001 (WHO) International Classification of Functioning, Disability and Health (ICF) is a common framework describing functioning in daily life and health from a bio-psycho-social perspective. The overall aim of the ICF is to provide a unified and standard language for the description of functioning (WHO, 2001). Functioning is described as the complex interplay of the health components body functions, body structures, activities and participation, and contextual factors, such as environmental and personal factors. For example, if a person with a rheumatic disease cannot engage in paid work, a specific ICF code, namely d850 Remunerative employment, can be assigned to describe the patient's ‘problem’ with undertaking paid work.

In order to treat the limitations of daily activities and restrictions in participation at the individual, institutional and societal levels, it may be important to explore which are the most ‘typical’ problems in daily life in various rheumatic conditions. The aim of the present study was to compare and contrast the concepts of functioning in daily life which are important to patients with various rheumatological conditions.

Method

  1. Top of page
  2. Abstract
  3. Introduction
  4. Method
  5. Results
  6. Discussion
  7. Conclusion
  8. Acknowledgements
  9. REFERENCES
  10. Appendix

Design

The present study involved a qualitative analysis of disease-specific focus-group studies performed in eight European countries: Austria, Germany, the Netherlands, Norway, Romania, Sweden, Switzerland and the UK (Coenen et al., 2006; Stamm et al., 2007a, 2007b, 2009, 2011). All studies used a shared topic guide (Appendix 1) to perform the focus-group sessions in a standardized way.

Participants

Individuals who met the American College of Rheumatology criteria (Altman et al., 1990; Anon, 1980; Arnett et al., 1988; Doria et al., 1994; Hochberg, 1997; McGonagle et al., 1999; Tan et al., 1982; Wolfe et al., 1990) for one of the following six rheumatic diseases [fibromyalgia (FM), hand osteoarthritis (HOA), psoriatic arthritis (PsA), rheumatoid arthritis (RA), systemic lupus erythematosus (SLE) or systemic sclerosis (SSc)] were invited to participate in a qualitative focus-group study performed in one of the following study centres: Carol Davila University of Medicine and Pharmacy of Bucharest and Cantacuzino Hospital, Romania (SSc), Diakonhjemmet Hospital, Oslo, Norway (HOA), Leiden University Medical Centre, the Netherlands (HOA), Ludwig–Maximilians University, Munich, Germany (FM, RA), Sunderby Hospital, Luleå and Lund University Hospital, Sweden (SSc), Lund University Hospital, and Spenshult Hospital, Sweden (HOA), Medical University of Vienna, Austria (HOA, PsA, SLE, SSc), Newcastle University, UK (HOA) and University Hospital Zurich, Switzerland (SSc).

Eligible individuals were fully informed about the study procedures and had to give written and oral informed consent according to the Declaration of Helsinki. Sampling of patients in each country followed a maximum variation strategy (Jones, 2002) based on the following criteria: age, gender and disease duration. All focus-group studies were approved by the institutional review boards of the participating centres.

Data collection

The focus groups involved 3–8 people and were chaired by a trained and experienced local moderator. Six open-ended questions were developed based on the conceptualization of functioning by the WHO ICF (WHO, 2001). The ICF includes the components ‘body functions and structures’, ‘activities and participation’ and ‘environmental and personal factors’. An example is the question related to activities and participation: ‘If you think about your daily life, what are your problems?’. The questions were originally formulated in German and English by native speakers of both languages and were then translated and translated back by native speakers into the local languages. The focus-group sessions were transcribed verbatim and the concepts important to the participants were extracted by using a qualitative content analysis (Coenen et al., 2006; Stamm et al., 2007a, 2007b, 2009, 2011).

Data analysis

The concepts that had been extracted in each of the focus-group studies were combined and then compared by two researchers (M.C., T.S.) to determine whether people with different conditions reported similar concepts. Concepts were compiled using the structure of the ICF classification. Examples were the concepts ‘self-confidence’ (mentioned in SLE and SSc only) and ‘sleeping’ (mentioned in all six diseases). When there was disagreement, a consensus was achieved through discussion about all three levels of qualitative data involved (transcripts, sub-concepts, concepts). If necessary, a researcher went back to the transcripts to ensure that the concepts accurately reflected what the patients said in the focus groups.

Results

  1. Top of page
  2. Abstract
  3. Introduction
  4. Method
  5. Results
  6. Discussion
  7. Conclusion
  8. Acknowledgements
  9. REFERENCES
  10. Appendix

Description of the participants

A total of 229 patients participated in 44 (FM: six; RA: five; SSc: 13; SLE: four; PsA: six; HOA: ten) focus groups in eight European countries (Table 1).

Table 1. Description of the sample, showing the total number of the participants, the number of women, their ages and disease durations, and the participating countries for each condition.
 FMHOAPsARASLESSc
  • In some centres, the transcripts were destroyed because of ethical requirements immediately after transcription. Regarding the duration of the focus groups, only mean and standard deviation were recorded for each centre.

  • FM, fibromyalgia; HOA, hand osteoarthritis; PsA, psoriatic arthritis; RA, rheumatoid arthritis; SLE, systemic lupus erythematosus; SSc, systemic sclerosis.

N335631252163
Women, number (%)30 (91)51 (91)14 (45)22 (88)20 (95)53 (84)
Age, mean (range)54 (36–69)63 (51–86)53 (25–71)59 (24–81)40 (26–66)56 (30–85)
Disease duration, mean (range) in years3 (<1–17)7 (<1–20)Arthritis 16 (<1 year – 45); skin condition 21 (<1 year – 48)16 (4–38)13 (2–30)10 (0.5–48)
CountriesGermanyAustria, Netherlands, Norway, Sweden, UKAustriaGermanyAustriaAustria, Romania, Sweden, Switzerland
Duration of focus groups in minutes87; 66; 90; 70; 90; 6360; 90; 37; 48; 57; 40; 6563; 58; 73; 46; 73; 4685; 86; 86; 87; 6460; 61; 53; 58120; 180; 83; 100; 84; 105; 50; 70

Number of concepts reported in all six conditions

Twenty concepts (out of 109) were described by patients with all six diseases (concepts marked in grey in Tables 2a–c). Activities and participation comprised the largest number of concepts, similar in all six diseases [eight (23%)] (Table 2b). In the area of body functions and structures, several concepts represented specific impairments that were relevant for certain conditions only (number of similar concepts = seven; 14%). In the area of environmental factors, five concepts (20%) were found to be similar in all six conditions. Concepts which could not be linked to the ICF were marked not covered (nc).

Table 2a. Concepts mainly related to the ICF components body functions and structures. The second column describes the ICF code that was linked to a concept according to a standard procedure (Cieza et al., 2005).
ConceptsICFFMHOAPsARASLESSc
  1. FM, fibromyalgia; HOA, hand osteoarthritis; ICF, International Classification of Functioning, Disability and Health; PsA, psoriatic arthritis; RA, rheumatoid arthritis; SLE, systemic lupus erythematosus; SSc, systemic sclerosis.

Body image and appearanceb1801, b530
Self-confidenceb1266    
Optimism, positive experience of the disease, being in controlb1265  
Irritabilityb1263     
Sleeping, affects sleepb134
Fatigue, lack of power and motivation, needs rest, slower pace, weakness, mental and physical exhaustion, impaired fitness as referring to the current individual state of the bodyb130, b4552
Orientation functionsb114     
Attention functionsb140   
Memory functionsb144   
Emotional issues, psychological problems such as anxiety, fear, fear of falling, frustration, feeling worn out, anger, sadnessb152
Expressing spoken languageb16810     
Taste functions, smell functionsb250, b255     
Painb280
Central nervous systems1, b1     
Impaired sex life and reproductive functionsb640-b670  
Impaired speech ability, problems with temporomandibular jointb310    
Impaired hearing functions, tinnitusb230, b2400     
Feeling of dizzinessb2401     
Immune systemb430, b435, s420 
Impaired touch function, numbness, sensations related to the skin, increased sensibility, loss of sensory functions, reduced tactile sense, pins and needles, sensations in fingersb265, b780, b840
Eyes, impaired visual functions, fluctuations in visual acuitys220, b210  
Structure of teeths3200     
Structure of external ear and maxillary air sinuss240, s710     
Fever, increased body temperature, hot flushes, chills, perspirationb550, b2700, b830  
Dry mucous membranes, dry mouth, eyes, noseb898, s898   
Affected connective tissueb798, s7703     
Functions and structures of cardiovascular system, endurance, changing blood pressure, tachycardia, heartb4, b410, s4  
Sensations related to cardiovascular functions, tightness of chest, feeling of heart attack, heart beat in ears, racing heartb460     
Breathing problems, cough, shortness of breathb4, b460, s4    
Lung, bronchias4301, b440, s4301, s43010    
Blood vessel functions, Raynaud's syndrome, feeling cold in whole body, hands and feet, cold hands, pain in handsb415, s4101, s4102, s4103,  
Bloodb430     
Peritoneums540     
Ingestion functions, swallowing problems, dysphagia, mouth too small, problems with oesophagus, biting foodb510, b535, s510, s520  
Pancreas, gall bladderb598, s550, s570    
Digestive functions, stomach complaints, diarrhoea, bowel problems, irritable colon, constipationb5, b515, b525, s5   
Stress incontinence, irritable bladder, urgencyb6202     
Swelling of body parts, water retention in legs and handsb545  
Structure and functions of the skinb8, s810  
Function and structure of hairb850, s840    
Function and structure of nailsb860, s830    
Kidneysb610, b545, s6100    
Stiffnessb710, b715, b780, b8, s810, s770 
Trembling in legs, restless legsb7651, b147     
Structure, stability and mobility of the (peripheral) jointsb710, b715, s770
Structure and functions of movement-related musclesb730, b735, b740, s7702  
Reduced strengthb730   
Bonesb729, s7700     
Structure, stability and mobility of the spines7600, b710, b715, b720  
Table 2b. Concepts mainly related to the ICF component activities and participation. The second column describes the ICF code that was linked to a concept according to a standard procedure (Cieza et al., 2005).
ConceptsICFFMHOAPsARASLESSc
  1. FM, fibromyalgia; HOA, hand osteoarthritis; ICF, International Classification of Functioning, Disability and Health; PsA, psoriatic arthritis; RA, rheumatoid arthritis; SLE, systemic lupus erythematosus; SSc, systemic sclerosis.

Focusing attention while completing a task, readingd160   
Learning new tasks, changing the way of doing thingsd155  
Thinking, problem solving, managing mental and physical stressd163, d240, d2401     
Handwriting, typing on computers or typewritersd170, d3601   
Managing everyday workloadd230    
Operating (mobile) telephones is difficultd3600    
Mobility, walking (including climbing stairs and running)d4, d450, d4551
Changing and keeping body positions and postured410
Lifting and carrying objectsd430
Problems with repetitive movementsd4     
Impaired hand function, reduced dexterity and motor precisiond440, d445
Opening doorsd445    
Using public transportation, getting in and out of transportation meansd470 
Driving a car, motorbike, bicycled4751, d4750
Eating and drinking, eating dry food, cutting foodd550, d560    
Self-care (e.g. washing whole body, hair, towelling legs, caring for nails, brushing teeth, blow-drying hair)d5 
Dressing, putting on shoesd540  
Applying self-treatment strategiesd570  
Preparing mealsd630  
Household activities, doing houseworkd640
Maintaining householdd6501    
Gardeningd6505 
Caring for children/grandchildrend660   
Shaking handsd7105  
Intimate relationshipsd770   
Paid work and productive activitiesd8
Schoold820     
Working on a computerd810, e135    
Shoppingd6200 
Entering cold rooms in supermarketsd6200     
Relationship with family members, friends and other peopled7   
Difficulties with leisure activitiesd920
Socializing, loneliness, avoiding social contactd9205 
Going on holiday (especially in a hot climate)d920, e225    
Loss of (leisure) time, needing more time to accomplish daily activitiesd   
Table 2c. Concepts mainly related to the ICF components environmental (e) and personal factors (PF), as well as to the health condition itself. The second column describes the ICF code that was linked to a concept according to a standard procedure (Cieza et al., 2005).
ConceptsICFFMHOAPsARASLESSc
  1. FM, fibromyalgia; HC, linked to health condition; HOA, hand osteoarthritis; ICF, International Classification of Functioning, Disability and Health; NC, not covered by the ICF classification; PF, personal factor; PsA, psoriatic arthritis; RA, rheumatoid arthritis; SLE, systemic lupus erythematosus; SSc, systemic sclerosis.

Drugs, side effects of drugse1101 
Food and nutritione1100  
Clothes and means for keeping warm, comfortable clothes, shoes with low heels/orthopaedic shoese1150   
Assistive devices, adaptations, adapted car, electronic devices, splints and orthoses experienced as helpfule115, e125, e135, e1201
Household articles, furniture, computerse115, e130    
Construction of carse1200    
Public transportation, trainse5400   
Access and structure of buildings and of workplacee150, e155 
Infrastructure, parking places for disablede120, e5, e520    
Living conditions, living alonee     
Loss of income, additional costs (out-of-pocket costs)e1650
Crowdse215    
Climate and (extreme) weather conditions, including sensitivity to cold or heate225, e2600
Support of otherse3
Attitudes of otherse4
Institutions and policies of institutions and authorities, of (health) insurance companiese5802, e5 
Non-pharmacological treatmente5 
Own attitudes towards disease, oneself, others, drugs and accepting helpPF 
Gender-specific differences (e.g. losing hair is terrible for a women)PF    
Course of the disease, daily fluctuation and variability of symptomsHC  
Health condition is difficult to explain, is unknown, took a long time to diagnose, diagnosis is difficultHC   
Giving up career plansNC    
Uncertainty whether ‘symptoms’ are disease-related or related to the ageing processNC    
Employers' policiesNC   
Information from the internet, (false) information regarding disease and treatment in the mediaNC    

Different experiences of similar concepts

Although a large number of concepts (depicted in Tables 2a–c) were described in some conditions only, 20 concepts were similarly extracted in all six conditions. However, within these 20 concepts, the experiences of the patients varied between the conditions. We selected the concepts attitudes of others, body image and appearance, and driving as examples because they are rarely included in the routine clinical assessment of people with rheumatic conditions.

Attitudes of others

‘Attitudes of others’ in the ICF component ‘environmental factors’ varied within the groups. Both positive and negative attitudes were expressed by friends of patients with FM, HOA, RA, SLE, SSc, colleagues (FM, PsA, RA, SLE, SSc), health professionals (FM, HOA, PsA, RA, SLE, SSc), other professionals (FM, SLE) and other people (RA, SLE), as described in the following examples:

SSc (Romania): ‘ When I'm on public transport and I pay for my bus ticket, when I stretch out my purple hand and the seller looks strangely at me, I no longer want to stretch out my hand’ (female, 41 years old, disease duration four years).

RA (Germany): ‘Someone even said to me outright: “I dont want to have anything to do with people like you because it scares me. You're sick and maybe I'll get it too”’ (female, 54 years old, disease duration ten years).

The attitudes of partners, children and other family members of those with FM, PsA, RA, SLE, SSc were described as positive only, whereas only negative attitudes were experienced by strangers of people with FM, PsA, RA, SLE, SSc, employers (FM, RA, SSc) and society in general (RA, SLE).

Body image and appearance

A concept reported in all six conditions was ‘body image and appearance’, including aesthetic changes and the appearance of hands. Patients with HOA were concerned about the aesthetic changes to their hands. A woman over 50 years old with HOA (Austria) described that she had ‘no pain’, but that ‘the appearance’ of her hands bothered her the most. A woman with HOA in the Netherlands was ‘annoyed’ that she ‘can't wear rings’ because of the swelling of her finger joints. Similarly to HOA, patients with RA were also concerned about the aesthetic changes to their hands:

RA (Germany): ‘And if one has such ugly hands, thick hands; therefore I do not like to shake hands [with other people]. Then I'm embarrassed because I have thick hands’ (female, 62 years old, disease duration 13 years).

In addition to the above-reported experiences regarding the aesthetic changes to the hands, participants with FM, RA, SLE, SSc and PsA described that the experience of the body as a whole, their body image and the appearance of their body had changed:

FM (Germany): ‘I need so much time for brushing my teeth, for dressing myself, there are the fingers, the feet and everything else [the other body parts]. It's as if my body is not a part of myself, I have to put everything together [in German: das muss ich alles zusammenrichten], the head, the feet, the arms’ (female, 55 years old, disease duration two years).

PsA (Austria): ‘I could not go to the hairdresser because he looked at me in a strange way and probably suspected that I had leprosy or a similar disease. It looks rather disgusting, the dandruff etc; also my legs; in summer, if I want to go outside or in the swimming pool, I feel embarrassed because of the marks and the overall appearance’ (female, 54 years old, disease duration: arthritis 45 years; skin condition 45 years).

RA (Germany): ‘I wear only trousers and then people ask: “Why don't you ever wear a skirt?” Then I say: “I can't wear a skirt with these ugly shoes [that she has to wear because of RA foot problems]. That doesn't match”’ (female, 48 years old, disease duration 17 years).

SLE (Austria): ‘My first symptoms of HIM [speaks of SLE in a personalized way] were on the skin, a rash on my face, and the people looked at me as if I had leprosy. I had two dogs at that time and had to go out and nobody dared to speak to me. So I just walked along’ (female, 30 years old, disease duration five years).

SSc (Sweden): ‘I did lose so much weight so I [short break] I wanted to hide myself from people because I looked like walking death. It was not a pleasant sight, so I refused to look at myself in the mirror; [short break] I thought it was difficult before when I had gained weight, now I prefer to be a little fatter than too thin; [short break] Yes, it was hard there in the beginning, because I weighed so very little; and looked like a skeleton’ (a participant over 50 years old and with long-established disease).

In all these quotes, body image and appearance was the common denominator, although different experiences were linked to the different conditions: experience of the body as a whole (FM), having to wear ‘ugly’ clothes/shoes (RA), attitudes of hairdressers (PsA) and other people (SLE) towards the appearance of the skin, hands and loss of weight (SSc).

Driving

A concept mentioned in all six conditions from the area of activities and participation was ‘driving a car, a motorbike or a bicycle’. Driving may be an important aspect of personal mobility and independence and is not commonly included in the regular assessment of patients with rheumatic conditions. A participant from the UK with HOA was concerned about their potentially affected mobility, including driving:

Sometimes even holding the steering wheel when I'm driving is difficult’ (female, 63 years old, disease duration ten years).

People with PsA, RA, SSc and SLE described several physical problems with driving as a result of impaired joint function and movement of body parts, and loss of strength and fitness, whereas people with FM reported physical and mental problems, such as disorientation, insecurity and feeling sick or overwhelmed while driving. The following quotes are examples from the focus groups:

PsA (Austria): ‘After driving over two hours I could not get up any more, I had to pull myself out of the car using the roof rack and I could not put weight on my feet. I had never had such an experience before’ (male, 68 years old, disease duration: arthritis 43 years; skin condition 33 years).

RA (Germany): ‘Sometimes my condition is so bad, that riding a bicycle is easier for me than driving a car. When driving a car, I have to look over my shoulder and have to use the clutch. If the ankle joint is affected I can't do those things anymore’ (female, 50 years old, disease duration 11 years ).

SLE (Austria): ‘I was not able to start the car anymore, because turning the key was too painful. I was afraid that I couldn't drive anymore because [of] also having to turn the steering wheel – I have no power-assisted steering – was so painful’ (female, 32 years old, disease duration two years).

SSc (Sweden): ‘I have more need of the car now, because before I always walked to work or biked. But now I feel that it takes a lot of strength to ride a bike, even just pedalling, I think I have a problem; even if my fitness increases, suddenly it drops down again for some reason, I don't know why’ (a participant over 50 years old and with long-established disease).

FM (Germany): ‘I can explain this in the following way: I would like to drive somewhere and in the next moment, I don't know where to drive anymore. I know it afterwards, but in that moment, I don't know. I'm completely disoriented’ (female, 55 years old, disease duration two years).

Discussion

  1. Top of page
  2. Abstract
  3. Introduction
  4. Method
  5. Results
  6. Discussion
  7. Conclusion
  8. Acknowledgements
  9. REFERENCES
  10. Appendix

The present qualitative analysis describes concepts related to problems in daily life that were similarly important to patients with all six rheumatic conditions. These concepts cover a wide spectrum of impaired body functions and structures, activities of daily living, as well as corresponding environmental factors. Although these concepts may not cover all problems that are important in a specific disease, they may represent the ‘most typical’ problems of patients with the six rheumatic conditions included in the present study.

The area in which the fewest common concepts were reported was environmental factors. In previous studies, a large number of concepts in the area of environmental factors were not covered by the instruments commonly used to assess patients' health status or functioning (Stamm et al., 2007a,2007b, 2007, 2009). It might thus be questioned whether environmental factors need to be covered by routine clinical assessments. If patients report an individual problem, environmental factors could instead be specifically assessed – for example, by an occupational therapist or social worker.

All concepts that were mentioned in all six conditions could be linked to ICF codes. Thus, the most commonly affected concepts for describing the functioning of patients with different rheumatic conditions were sufficiently covered in the ICF, whereas the concepts that could not be linked to ICF categories might represent specific problems in certain conditions. Qualitative studies focus on the content of a concept but put less weight on the number of concepts. The present study shows that, although the same concept was linked to a part of the transcript, the experiences of the patients differed.

An example of this is how driving was described in the FM focus groups: mental aspects (e.g. problems with attention and concentration, feeling sick) that limit the ability to drive were an important issue; by contrast, only physical limitations were mentioned in all other diseases. Contrary to our expectations, and because of the potential involvement of their central nervous system (Cervera et al., 1993; Petri, 2000), patients with SLE mentioned only physical aspects which limited their ability to drive a car, motorcycle or bicycle. However, a patient with SLE (Austria) described problems focusing attention when using the underground:

When using the underground, I could not concentrate properly’.

A feeling of insecurity when driving, as described by the patients with FM, might be a specific issue in this condition, whereas people with SLE, a condition which affects the central nervous system, might be severely limited in their daily activities and might not drive a car at all.

A limitation of the present study might be the lack of generalizability, although a large amount of qualitative data for different rheumatic conditions were analysed. Furthermore, the researchers who performed the analysis used the data and the analyses of condition-specific studies which had been conducted in different European countries, but were not familiar with all the cultural differences, nuances and meanings of every concept. However, if there were unclear issues about the meaning of a concept, the researchers went back to the transcript and contacted the local investigators in the respective country.

Conclusion

  1. Top of page
  2. Abstract
  3. Introduction
  4. Method
  5. Results
  6. Discussion
  7. Conclusion
  8. Acknowledgements
  9. REFERENCES
  10. Appendix

Although a large number of similar problems (such as body image, fatigue, emotional issues, mobility and hand function) are mentioned as ‘typical’ by patients with various rheumatic conditions, patients experienced their problems in daily life differently. These problems could probably be targeted, with a disease-specific approach, in interventions by non-physician health professionals.

Acknowledgements

  1. Top of page
  2. Abstract
  3. Introduction
  4. Method
  5. Results
  6. Discussion
  7. Conclusion
  8. Acknowledgements
  9. REFERENCES
  10. Appendix

This study was partly funded by EULAR. This is a publication of the Joint and Bone Center for Diagnosis, Research and Therapy of Musculoskeletal Disorders of the Medical University of Vienna, Austria. We would like to thank all the patients who participated in the focus groups.

REFERENCES

  1. Top of page
  2. Abstract
  3. Introduction
  4. Method
  5. Results
  6. Discussion
  7. Conclusion
  8. Acknowledgements
  9. REFERENCES
  10. Appendix
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Appendix

  1. Top of page
  2. Abstract
  3. Introduction
  4. Method
  5. Results
  6. Discussion
  7. Conclusion
  8. Acknowledgements
  9. REFERENCES
  10. Appendix

Topic guide: Focus group interview questions

  • If you think about your body and mind, what does not work the way it is supposed to?
  • If you think about your body, in which parts are your problems?
  • If you think about your daily life, what are your problems?
  • If you think about your environment and your living conditions, what do you find helpful or supportive?
  • If you think about your environment and your living conditions, what barriers do you experience?
  • If you think about yourself, what is relevant for the way with which you handle your disease?