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Patient perspective of hand osteoarthritis in relation to concepts covered by instruments measuring functioning: a qualitative European multicentre study
  1. T Stamm1,
  2. F van der Giesen2,
  3. C Thorstensson3,
  4. E Steen4,
  5. F Birrell5,
  6. B Bauernfeind1,
  7. N Marshall5,
  8. B Prodinger1,
  9. K Machold1,
  10. J Smolen1,
  11. M Kloppenburg2
  1. 1
    Vienna Medical University, Department of Internal Medicine III, Division of Rheumatology, Vienna, Austria
  2. 2
    Department of Rheumatology, Leiden University Medical Centre, Leiden, The Netherlands
  3. 3
    Research and Development Centre, Spenshult Hospital for Rheumatic Diseases, Halmstad, Sweden
  4. 4
    Department of Rheumatology and National Resource Centre for Rehabilitation in Rheumatology, Diakonhjemmet Hospital, Oslo, Norway
  5. 5
    Newcastle University, Northumbria Healthcare NHS Foundation Trust, Newcastle, UK
  1. Correspondence to Dr T Stamm, Vienna Medical University, Department of Internal Medicine III, Division of Rheumatology, Währinger Gürtel 18-20, A–1090 Vienna, Austria; Tanja.Stamm{at}meduniwien.ac.at

Abstract

Objective: To explore whether the concepts important to patients with hand osteoarthritis (OA) are covered by the most commonly used instruments measuring functioning.

Method: A qualitative multicentre study using a focus group technique was performed in five European countries: Austria, The Netherlands, Norway, Sweden and the United Kingdom. The qualitative data analysis followed a modified form of “meaning condensation” and used the International Classification of Functioning, Disability and Health (ICF) as a theoretical framework. Finally, the concepts from the focus groups were compared with the content of the most commonly used instruments which had been identified in an earlier theoretical analysis.

Results: Fifty-six people (51 women, mean (SD) age 62.7 (7.9) years) with hand OA participated in this study in two focus groups per centre. 63 concepts were extracted from the focus groups. Twenty-one (33%) of the 63 concepts were covered by at least one instrument. Psychological consequences, different qualities of pain, aesthetic changes and leisure activities are important concepts from the focus groups which were not covered by the instruments. The qualitative analysis revealed detailed descriptions of pain-concerning sensations, levels and a certain relation to activity, none of which were fully represented in the instruments routinely used.

Conclusion: It was possible to combine the concepts of the focus groups from each centre into a common qualitative analysis. The concepts important to people with hand OA are not fully represented in the most commonly used instruments.

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Osteoarthritis (OA) is the most common joint disease and most frequently involves joints of the hands.1,2,3,4 To measure the clinical effects of treatment and health status of patients, measurement of functioning is recommended in the literature.5,6,7 Functioning can be explained by the comprehensive model of the International Classification of Functioning, Disability and Health (ICF). “Functioning” in this model comprises all different aspects of the way in which a specific health condition affects life and thus includes body functions and structures, activities and participation related to environmental and personal factors.8 Activity is defined in the ICF as the execution of a task or action by an individual, whereas participation is the person’s involvement in a daily life situation. In relation to functioning, WHO defines quality of life as the individuals’ perception of their position in the life context of the culture and the value systems in which they live.9 People with a specific health condition may thus not be able to differentiate between functioning as such and their individual perception and satisfaction with their own level of functioning. From the perspective of patients, functioning and quality of life may be regarded as inter-related.

Various instruments measuring functioning have been developed.6,10 However, these questionnaires were predominantly developed from lists of items selected by professionals and none have included patients from several different countries.11,12,13,14,15,16 It may thus be questioned whether the content of these questionnaires covers the spectrum of problems in functioning faced by patients with hand OA.17 In a qualitative pilot study, we identified concepts important to patients and not covered in the questionnaires, such as problems with the use of mobile phones.18 Existing pain measures were also found not to capture adequately the pain experienced by patients with OA.19 Another example might be aesthetic damage, which publications have described as an important concern according to the clinical experience of experts,7 but which has not been investigated systematically from the perspective of patients. No instruments exist to measure aesthetic damage and its effect on functional ability.6,7

Content validity is a most important quality criterion if an instrument is intended for use as an outcome measure.20 Researchers and clinicians need to know whether or not an instrument covers the relevant outcomes important to patients. People with hand OA may face problems which are not included in the most commonly used instruments.

The overall aim of this study was to explore whether the concepts important to patients with hand OA from different European countries are covered by the most commonly used instruments measuring functioning. The specific aims were (a) to achieve a broad understanding of the concepts important to people with hand OA in different European countries related to functioning using a qualitative approach; (b) to link these concepts to the most commonly used instruments measuring functioning; (c) to identify concepts important to patients not covered by the most commonly used instruments in order to formulate suggestions for the improvement of existing instruments and the development of new instruments and (d) to explore the use of qualitative research methods in a European multicentre study.

Method

Design

A qualitative European multicentre study using a focus group technique21,22 was performed because of the potential for patients to differ considerably across cultures.23 Rheumatology centres in the following five European countries participated: Austria (Medical University of Vienna), The Netherlands (Leiden University Medical Centre), Norway (Diakonhjemmet Hospital Oslo), Sweden (Spenshult Hospital and Lund University) and United Kingdom (Newcastle University).

Participants

Patients from the outpatient departments of the participating centres had to meet the American College of Rheumatology (ACR) criteria for hand OA24 to participate in the study. In Austria, the Netherlands and Norway, people who had already participated in hand OA cohort studies were approached. Patients who were eligible were sent a letter asking whether they would like to participate in the study and full information about the study procedures was included. People were then contacted by phone and asked whether they would be willing to participate. If yes, participants had to give oral and written informed consent according to the Declaration of Helsinki 1996. Before each focus group started, the participants of the particular group were informed again about the procedure and tape recording of the group session and were again asked for oral informed consent. The study was approved by the institutional review boards and ethics committees of the participating centres.

Sample size

Two focus groups were conducted in each participating centre. From earlier studies,25,26 we estimated that about 8–10 focus groups were needed to obtain data of sufficient depth. To obtain the required level of rich, meaningful and in-depth data, qualitative research typically uses small sample sizes with a diverse range of participants. Individual experiences which can express variations of a given phenomenon and potentially raise new and unexpected issues are more important than numbers and frequencies.27,28,29

Sampling of patients in each country followed a maximum variation strategy27,30 based on the following criteria: women and men, disease duration and age.

Data gathering

All focus groups were chaired by a trained moderator together with one or two assistants responsible for observing the group and recording the data. Moderators from every centre who had extensive experience with qualitative research before this study met for one training session at the start of the project. Five open-ended questions were formulated around functioning in daily life based on the bio-psycho-social model of the WHO ICF8 and have been described elsewhere.25,26,31 The WHO ICF model was chosen as a theoretical framework because it is a comprehensive framework for explaining functioning in daily life.32

All questions were originally formulated in German and English by native speakers of both languages and have been used in previous studies aimed at understanding the perspective of patients with different diseases.25,26,31 For this study, the questions were forward and back translated by native speakers into each of the necessary languages. Each focus group was tape-recorded and transcribed verbatim in the local language. Transcribed data were then read through and checked by the local investigators for completeness.

Data analysis

The qualitative data analysis followed a modified form of content analysis, so-called “meaning condensation”,27 depicted and described in fig 1. The figure shows the graphical depiction of the qualitative analysis from the transcribed text to the higher-level concepts which are shown in tables 2A–C. Each local investigator who had moderated the focus groups divided the transcribed text into meaning units and determined the theme that dominated this particular meaning unit. A meaning unit was defined as a specific unit of text, either a few words or a few sentences with a common theme.27 In the next step, the concepts contained in the meaning units were identified. A meaning unit could contain more than one concept. A concept or a theme in each analysis was defined as a separate meaningful entity distinct from other concepts and themes, but with the possibility of a hierarchy of “subconcepts” related to this particular concept.27 Concepts were assigned in English. If a translation of a term was unclear to the investigator, it was discussed and solved by consensus in a group meeting of all investigators. In the next step of the analysis, the concepts extracted from the focus groups in each country were combined. This was done by all researchers together at a meeting in Vienna. Each concept extracted from a focus group was written on a piece of paper. Then, the concepts from all focus groups of all countries were organised together into a new scheme which followed the overall bio-psycho-social model of the ICF.8 During the panel analysis, any concept relating to a particular ICF domain, for example to the ICF domain environmental factors, was then put into that ICF domain, but not depending on the context in which it was originally mentioned in the group discussion.

Figure 1

Graphical depiction of the qualitative analysis.

Instruments

The following most commonly used instruments measuring functioning in patients with hand OA were identified in a structured literature search which has been described elsewhere33 and included in this analysis: the Health Assessment Questionnaire (HAQ),14,34 the AUSCAN (AUS),11,35 the Cochin (COC) scale,12,36 the Functional Index of Hand OA (FIHOA; FIH),15,37 the Score for Assessment and Quantification of Chronic Rheumatoid Affections of the Hands (SACRAH; SAC) questionnaire16,38 and the Arthritis Impact Measurement 2 Short Form (AIMS2-SF; AIM) questionnaire.13,39

Procedure to determine whether a concept was covered by the instruments

To determine whether a concept from the focus groups was covered by any of the instruments, we obtained the content of the items contained in the instruments and the corresponding ICF categories. In a previous content analysis,33 ICF categories were linked to the items of the instruments, which allowed comparison of the content of the instruments using the same theoretical framework. In the next step of the analysis, the ICF was also used as a frame of reference to compare the content of instruments to the concepts contained in the focus groups.25,26 An example was the concept “affects sleep” from the focus groups, which was found to be covered by the AIMS2-SF item “How often does pain affect your sleep?” which has been previously linked to the ICF category b134 Sleep functions.

Accuracy and rigor of each qualitative data analysis

Two meetings of all investigators, who were also the moderators of the focus groups, were scheduled: one before data gathering and another at the start of the analysis so that part of the qualitative analysis could be carried out by the panel together. All investigators had extensive experience with qualitative research before this project. Each investigator was given two pages of the English transcript so that they could extract meaning units and the concepts contained within it before starting to analyse their own data. These two pages were discussed by the investigators until consensus was achieved in order to reach a common understanding of the meaning and depth of the concepts.

Results

Participants

Fifty-six people with hand OA participated in this study. Table 1 presents the characteristics of the participants.

Table 1

Demographic data of the participants per centre

Concepts obtained in the qualitative analysis

Table 2, parts A–C shows the concepts derived from the qualitative data of all centres.

Table 2

Concepts mainly related to (A) body functions and structures, as well as personal factors; (B) activities and participation; (C) environmental factors

The qualitative analysis revealed detailed descriptions of pain sensations, levels and a certain activity perspective. Examples of pain sensations were “pain like a knife cutting”, “pain like fever”. Examples of levels of pain were “itching”, “ache”, “tenderness”, “killing pain” (table 2A). The activity perspective of pain was described by one participant in the following way:

“I have to be more careful than I used to, my hands are painful all the time when I use them” (Norway).

Another participant explained pain related to an activity in the following way:

“When I am horse riding even in mid-summer I have to wear gloves because I am frightened in case I knock anything because if I knock these joints I could scream” (UK).

“Can’t do fun things because of pain” (table 2, part A) was kept as a separate concept because of the separate dimension of “fun” in an activity which was described in Sweden and the UK as being limited because of pain.

Aesthetic changes (table 2, part A) included “aesthetic changes”, “appearance”, “wearing (or not wearing) jewellery” and “stopped speaking with hands”. One participant said:

“I say this specifically on behalf of all women in our age, now we could (financially) afford jewellery, but could not afford to wear the jewellery because of the terrible appearance of our hands” (Austria).

Examples for the concept “needing to change habits” (table 2, part B) included “the difficulty opening bottles requires changing life style” (Austria) and “needing to buy new pots and pans because the old ones are too heavy” (Norway). While habits referred to frequently repeated patterns of activities,40 the concept “needing to change activities” (table 2, part B) included “changed needs” (Sweden), “finding new ways of doing things” (Sweden), “the awareness of own limitations in certain activities” (Norway), “balancing activities during the day” (Norway) and “coping” (Sweden).

A participant explained “changed needs” in the following way:

“I used to be needle working. I don’t know if I don’t fancy it any more, but I can’t hold the needle any longer. I hardly do any needle working now, but it could be because I don’t need it, I don’t have to. I can buy the things very cheap at the church” (Sweden).

An example for the concepts “finding new ways of doing things” was the following description by a participant:

“I tell my grandchildren to jump, because I can’t lift them up. Or I can bend my knees and come down to them instead” (Sweden).

One participant described “coping” in the following way:

“I try to think positively ‘it’s just the hands’, and not any other disease. I do everything I used to do, even though I drop pens and make a mess. I can’t open a wine bottle any longer, which is very sad (she works in a hotel and restaurant). But I think it’s about turning your thoughts and thinking positively. If you think negatively, you’ll get depressed” (Sweden).

So-called “self-treatment strategies” (table 2, part C) was regarded as a separate concept as opposed to treatment recommended or applied by health professionals. One participant said:

“The own attitude (towards the disease), I have to live with it (the disease) and make the best out of this situation. … Most important is accepting ones own situation because no painkiller can reduce the pain completely, most important is to learn to live with it (the disease) oneself”’ (Austria).

Concepts contained in the instruments

Twenty-one (33%) of all 63 concepts were covered by at least one instrument. Only one concept—namely, “handling small gadgets is difficult” was covered by all instruments (table 2, part B).

Although the three instruments AIM, AUS and SAC measure pain in the hand joints and two of these instruments—namely, AUS and SAC, include activity related pain, the instruments do not cover the qualitative dimension of levels and sensations of pain as described by the participants of the focus groups. The patient’s perception on aesthetic changes of the hands is not measured in any of the instruments commonly used in hand OA.

Discussion

A considerable number of concepts raised by the people with hand OA are not covered by the most commonly used instruments. Psychological consequences, different qualities of pain, aesthetic changes or leisure activities may be important aspects to be considered for inclusion in routinely used instruments in hand OA. Questionnaires that assess different aspects of pain have been developed recently in hip and knee OA.41,42

Only one concept—namely, “handling small gadgets is difficult”, was covered by all instruments and may be considered to be specifically important to people with hand OA owing to the affection of hand joints.

The instruments included in this analysis do not cover the concepts “needing to change activities” or “needing to change habits”. These concepts may be particularly related to some interventions of allied health professionals which deal with changes of behaviour—for example, joint protection counselling or instruction for exercises.43 It may be important to consider other instruments, such as the “Effects of Assistive Devices and Altered Working Methods in Women with Rheumatoid Arthritis” (EDAQ) questionnaire assessing changed activities or habits,44 which have been developed for rheumatic diseases other than hand OA.

“Operating (mobile) phones” and “caring for (grand) children” may be examples of important activities which are not covered by the existing and most commonly used instruments because these were developed several years ago. Hand OA is a progressive disease which affects 60–70% of the population above the age of 65.45 Communication devices may become increasingly important not only for the younger but also for the older population. Caring for grandchildren may be an important activity for older adults because traditional life and occupational roles of women and men may be changing. Instruments which were developed several years ago may need a “cultural” adaptation in order to remain valid.

It might be questioned whether all the concepts found not to be covered do need to be routinely assessed—for example, environmental factors. An alternative might be to use a specific instrument for evaluating the effect of interventions specifically targeting environmental factors, such as the provision of assistive devices or joint protection instruction.

It was possible to combine the concepts of the focus groups into a common qualitative analysis by merging similar concepts together. Even though healthcare systems differ, patients seemed to experience similar challenges. The leisure activities or specific sports activities (eg, skiing more likely to be mentioned in Austria, golf more likely to be mentioned in Sweden or the UK) may be different; however, the higher-level concept of leisure activities and sports was the same in these countries. Interestingly, gender differences emerged in two centres (Sweden, UK) only. However, the concept “husband helps” versus “gets up earlier than the husband to do all the housework” was also extracted from the focus groups in Austria and UK. European cultures, values and healthcare systems might be considered to be more close to each other than values from other parts of the world. Thus perhaps our study should be expanded. A limitation of our study is that patients were not involved in the generation of the questions or in the analytical process. Further research should include patients in more active research roles.

The qualitative analysis of the level of concepts was done in English because this was the common language of all local investigators. However, we had some discussions during the meeting on the terminology of pain levels and sensations. We disagreed for example on the exact meaning of the English terms “sore”, “pins and needles” and “tender versus painful”. All disagreements were solved by consensus through explanation and by comparing the meaning of the English terms in the local (sometimes more similar) languages—for example, Norwegian–Swedish. The qualitative analysis required more than one investigator and more than one meeting.

Conclusion

  • Similar concepts of the focus groups were merged to give a common qualitative analysis.

  • The range of concepts important to people with hand OA is not fully represented in the most commonly used instruments.

  • Psychological consequences, different qualities of pain, aesthetic changes or leisure activities should be considered for inclusion in routinely used instruments.

  • “Operating (mobile) phones” and “caring for (grand) children” are examples of important activities which are not covered by the existing and most commonly used instruments that were developed several years ago.

Acknowledgments

We thank all participants of the focus groups; all people who transcribed the tapes, for their excellent work; Dr Michaela Coenen from Munich, Germany, for support when planning this project.

REFERENCES

Footnotes

  • Funding This project was partly funded by a restricted grant from EULAR and by the DICHOA (Disease Characteristics in Hand OsteoArthritis) initiative.

  • Competing interests None.

  • Ethics approval Ethics committee approval obtained.

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