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Rheumatology Advance Access originally published online on November 1, 2005
Rheumatology 2006 45(1):61-65; doi:10.1093/rheumatology/kei099
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© The Author 2005. Published by Oxford University Press on behalf of the British Society for Rheumatology. All rights reserved. For Permissions, please email: journals.permissions@oxfordjournals.org

A simple extension to the Rheumatoid Arthritis Quality of Life Questionnaire (RAQol) to explore individual patient concerns and monitor group outcome in clinical practice

M. C. Greenwood, A. J. Hakim and D. V. Doyle

The Academic Rheumatology and Osteoporosis Unit, Whipps Cross University Hospital NHS Trust, Leytonstone, London E11 1NR, UK.

Correspondence to: M. C. Greenwood, The Academic Rheumatology and Osteoporosis Unit, Whipps Cross University Hospital NHS Trust, Leytonstone, London E11 1NR, UK. E-mail: Mandy.Greenwood{at}whippsx.nhs.uk


   Abstract
Top
 Abstract
Introduction
 Methods
 Results
 Discussion
 References
 
Objectives. To find out if the RAQol, if extended by a qualifying question on the level of concern associated with each item, can function both as a group outcome measure and as a useful tool to identify the concerns of individual patients.

Methods. Thirty-seven rheumatoid arthritis (RA) patients completed the questionnaire before and after starting a biological therapy. One hundred and forty-five others receiving routine care completed it at baseline, weeks 12 and 13 with EuroQol VAS and questions on global arthritis impact and any other concerns. Reproducibility was assessed in all 59 participants whose condition remained stable between weeks 12 and 13.

Results. The RAQol score was highly reproducible (intraclass correlation coefficient 0.986, n=59), reflected global RA impact (P = 0.000, n=140), negatively correlated with EuroQol VAS (Spearman coefficient=–0.639, two-tailed significance=0.000, n=142), responsive to biological therapy (two-tailed P= 0.000) and to increased global RA impact over 12 weeks (two-tailed P=0.012, n=37), and had high internal consistency (Cronbach's alpha=0.94, n=143). The number of issues of great concern and their percentage contribution to the RAQol score were related to global arthritis impact (P=0.000 for both) and reduced by a biological therapy (two-tailed P=0.000 and 0.001 respectively). The mean kappa for consistency in identifying each item as a concern was 0.801 (range 0.633–0.921).

Conclusions. Use of the ‘extended’ RAQol in clinical practice could provide a valid and sensitive score for monitoring group outcome and a comprehensive and consistent list of an individual's main issues of concern to assist assessment of needs in routine clinical practice.

KEY WORDS: Rheumatoid arthritis, Quality of life, Questionnaire, Outcome measures, Responsiveness, Biologic therapies


   Introduction
Top
 Abstract
 Introduction
Methods
 Results
 Discussion
 References
 
This study concerns the use of the Rheumatoid Arthritis Quality of Life Questionnaire (RAQol) in routine clinical practice to assess the specific quality-of-life needs of individual patients and to monitor the outcome of care for patient groups. The case for assessing quality of life (QoL) in the rheumatology clinic has been concisely put by Guillemin [1] who stated that ‘quality of life assessment of RA should be encouraged in clinical practice because it fosters better patient-physician relations and provides much needed long-term outcome information on drug therapy beyond clinical trials’.

While the RAQol is established as a disease-specific QoL instrument potentially useful for monitoring group outcomes [2–4], the score alone is of limited utility in individual patient care. The overall objective of this study was to test whether the addition of a qualifying question regarding the level of concern associated with each item would enhance its value to the individual patient and clinician in routine clinical practice through highlighting the QoL issues currently of most concern to the patient. These key areas of concern could then be used as a focus for the consultation between patient and professional. The study therefore tested whether, with the additional questions, the RAQol would identify a comprehensive and consistent list of the specific issues relevant to the individual without compromising the validity of the RAQol score.


   Methods
Top
 Abstract
 Introduction
 Methods
Results
 Discussion
 References
 
The RAQol was extended by asking ‘If yes, how much concern is this causing you at present?’ after each statement. The possible answers were ‘none’, ‘a little’, ‘a moderate amount’ or ‘a great amount’.

Ethical approval was gained from the local research ethics committee, Redbridge and Waltham Forest, London.

Postal survey of patients receiving routine care
All patients were attending a district general hospital where an annual outcome assessment is part of routine care for patients with rheumatoid arthritis (RA). All 237 patients with RA aged 18 to 80 yr who had completed this assessment in the previous year were invited to take part. Patients on biological therapies were excluded. Each was sent the RAQol, the EuroQol VAS [5] and a global arthritis impact question at baseline, weeks 12 and 13. At baseline they also listed any other ways that their arthritis was affecting their quality of life as a check of how comprehensively the RAQol covered their main QoL concerns. At 13 weeks they completed an arthritis impact transition question.

EuroQol VAS asked patients to rate their ‘own health state today’ on a vertical visual analogue scale from 0 (‘worst imaginable’) to 100 (‘best imaginable’) and was included as a generic measure of health. The global arthritis impact questionnaire [6] is shown in Box 1.
BOX 1. The global arthritis impact questionnaire

Considering all the ways that your arthritis affects you, how have you been over the past month?

Please tick one box

{square} very good (no symptoms and no limitation of normal everyday activities)
{square} good (mild symptoms and only minimal limitation of normal everyday activities)
{square} fair (moderate symptoms and limitation of some normal everyday activities)
{square} poor (severe symptoms and inability to carry out many normal everyday activities)
{square} very poor (very severe symptoms that are intolerable and inability to carry out most activities)

 

The transition question asked ‘Overall, how much is your arthritis troubling you now compared with when you last completed this questionnaire on ...?’ to which the patient could respond ‘much less’, ‘somewhat less’, ‘about the same’, ‘somewhat more’ or ‘much more’.

Response to commencement of biological therapy
A second group of 37 patients with RA completed the questionnaire before starting biological therapy (mean –1.5 weeks) and then again up to 10 months into treatment (mean 20 weeks and standard deviation 9 weeks). Thirty started Infliximab and seven Etanercept.

Analysis
The validity of the concern question was checked by testing the hypotheses that the number of issues of great concern to the patient (and their percentage contribution to the RAQol score) would be associated with global arthritis impact and would respond to change in arthritis impact or commencement of biological therapy.

Each patient's RAQol score was calculated as the number of RAQol statements that applied. Its validity and sensitivity was checked by testing the hypotheses that among patients receiving routine care, it would be significantly correlated with a generic measure of health status (EuroQolVAS), discriminate between groups of patients at different levels of self-assessed global arthritis impact and respond to change in global impact and to commencement of biological therapy. Cronbach's alpha was calculated for all postal survey questionnaires at baseline to check internal consistency.

Kruskal–Wallis analysis of variance was used to check the significance of the differences in RAQol scores and numbers of issues of great concern at different levels of global impact at the postal survey baseline.

The results of all postal survey participants whose global arthritis impact response and transition response demonstrated stability between weeks 12 and 13 (and who had completed the two assessments less than 2 weeks apart) were used to calculate kappa scores to check the consistency with which items were identified as a concern (any level) and to calculate an intraclass correlation coefficient for the RAQol score to check reproducibility.

The baseline and week 12 results of postal survey participants who had moved up or down one or more level on the global impact scale over this period were compared to assess responses to change, as were baseline and follow-up results of patients commencing biological therapy. The significance of changes was tested using Wilcoxon's signed ranks test. Guyatt's responsiveness index [7] was calculated as mean response to change divided by the standard deviation of the changes between weeks 12 and 13 in the stable subjects. The standardized response mean was calculated as the mean response to change divided by the standard deviation of the change scores. The effect size was calculated as mean response to change divided by the standard deviation of the initial scores.


   Results
Top
 Abstract
 Introduction
 Methods
 Results
Discussion
 References
 
Table 1 summarises the demographic aerails of the study patients. For the patients receiving routine care, Table 2 summarizes RAQol scores and levels of concern at different levels of self-reported global impact. Higher levels of global impact were associated with higher RAQol scores (Kruskal–Wallis test significances 0.000, n = 141) and a larger number of issues of great concern both in absolute terms (Kruskal–Wallis test significances 0.000, n = 140) and relative to the total RAQol score (Kruskal–Wallis test significances 0.000, n = 140). In other words, the results supported the hypotheses that more statements would apply to patients at higher levels of global impact (reflecting a greater breadth of impact) and that a relatively higher proportion of these would be associated with great concern (reflecting the greater severity of effect and importance to the patient of the individual issues).


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  		TABLE 1. Patient characteristics

 

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  		TABLE 2. RAQol scores (medians) and levels of concern at different levels of global arthritis impact (postal survey of patients receiving routine care) for the question ‘Considering all the ways you arthritis affects you, how have you been over the past month?

 
Good convergent validity was demonstrated for RAQol by a significant negative correlation with EuroQol VAS (Spearman correlation coefficient = 0.639, two-tailed significance = 0.000, n = 142). Internal consistency was high (Cronbach's alpha of 0.94, n = 143).

Fifty-nine of the postal survey patients fulfilled the criteria for the analysis of consistency and reproducibility over weeks 12 and 13. Good reproducibility of RAQol score was indicated by an intraclass correlation coefficient of 0.986 (n = 59). The distribution of score differences was approximately symmetrical with a mean of –0.31 (95% confidence interval –0.75, 0.14) and a standard deviation of 1.7. The kappa values for each RAQol statement for chance-adjusted agreement in identifying each statement as a concern (any level) ranged from 0.633 to 0.921 with an average of 0.801.

The responses to biological therapy are shown in Table 3 The changes associated with increased and decreased global impact between baseline and 3 months of the postal survey are shown in Table 4. Values for EuroQol VAS have been included for comparison. The excellent responsiveness of RAQol to biological therapy was indicated by a high Guyatt's index of –4.05 and by very significant score reductions from a median of 23 before to 16 on treatment (two-tailed P = 0.000). Issues causing great concern were also significantly reduced (two-tailed P = 0.000) from a median of 5 before to 1 on treatment while their contribution to the total RAQol score declined from a median of 24% to 10% (two-tailed P = 0.001), thus providing evidence that the additional question on concern is sensitive to change in overall condition. The generally smaller changes associated with change in global impact in the postal survey reflect the fact that no specific intervention had taken place. However, the increase in median RAQol score from 14 to 17 that accompanied an increase in impact was significant (P = 0.012, n = 37).


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  		TABLE 3. Response to biological therapy (n = 37)

 

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  		TABLE 4. Response to changes in self-reported global arthritis impact over 3 months

 
Fifty-five of the 145 participants in the postal survey listed at least one additional way in which their arthritis was affecting them. Thirty-two of these included at least one issue that was already covered by the RAQol and in all cases, had responded with ‘yes’ to the appropriate statement in the questionnaire. The remaining issues are listed in Table 5, although some of these could also be considered covered by the RAQol. For example, six patients listed ‘difficulty with stairs’, and three cited ‘difficulty driving’, both of which might be covered by the statement ‘My condition limits the places I can go’. Many would be classified as symptoms (pain and stiffness). Employment concerns, potentially an important QoL issue, and a subject not covered by the RAQol, were cited by only five out of 145 patients, reflecting the post-retirement age of most of the cohort. Table 6 lists the five RAQol statements most frequently reported to be causing great concern by the patients receiving routine care.


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  		TABLE 5. Additional issues raised by patients

 

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  		TABLE 6. Statements most frequently associated with great concern at baseline

 

   Discussion
Top
 Abstract
 Introduction
 Methods
 Results
 Discussion
References
 
The capacity of the extended RAQol to identify the most important quality-of-life concerns of individual patients will depend in part on the relevance of the RAQol statements to the patients with RA seen in clinical practice. The analysis of additional QoL concerns listed by participants suggested that the RAQol covered the majority of the everyday issues of importance to the participants. If available at the consultation, the list of concerns could serve as a useful starting point for discussion on the more specific nature of the patients particular needs and difficulties. The kappa scores suggest a good level of consistency in identifying issues of concern. The significant differences in the numbers of statements of great concern at different levels of global arthritis impact and the changes in response to commencement of biological therapy support the validity of the additional question on concern.

This study has demonstrated that the RAQol score derived from this ‘extended’ form of the questionnaire was valid, internally consistent, reliable and responsive to change. It was able to discriminate between patients with different levels of global RA impact and was significantly correlated with the closely related but not identical concept of patient-assessed overall health status as measured by EuroQol VAS. One concern is that the additional question might influence the way in which a patient responds. For instance, a patient might have been more willing to say that a statement applied if he or she could qualify this by saying that it was of little or no concern. Therefore scores derived from the original and extended forms of the RAQol though both valid, cannot be regarded as equivalent.

Most questionnaires for RA have been designed and validated for monitoring and comparing the outcome of patient groups and do not necessarily provide information relevant to the management of individual patients. For example, the EuroQol VAS is an established generic tool for assessing a patient's view of his or her overall health status. It is validated for group outcome comparisons in RA, but at an individual patient level is difficult to interpret and casts no light at all on the nature of the patient's difficulties. In clinical practice it would seem practical and desirable to use one short questionnaire both to monitor the outcome of patient groups and to help identify the needs and concerns of an individual patient. We have provided support for the proposal that in this slightly extended form the RAQol can perform both functions.

This use of the RAQol and the provision of the results for reference during the clinical consultation might prove a useful means of facilitating communication on quality of life priorities. Higginson and Carr [8] have argued that using QoL measures in clinical practice could facilitate doctor–patient communication by identifying important issues, putting across the patient's view of outcome and his or her personal priorities so that treatment decisions can be best suited to individual needs. Awareness that there may be a need to explore doctor–patient communication is suggested by the work of Kwoh and Ibrahim [9] who, using a cross-sectional, observational study design with four rheumatologists and 79 of their patients, found that physicians often failed to identify the patients’ priorities.

There is also evidence from the field of oncology that quality-of-life data can promote communication of QoL issues. Detmar and Aaronson [10] have observed that when summaries of the European Organisation for Research and Treatment of Cancer (EORTC) questionnaire were available to doctors in an oncology clinic, the doctors raised three times as many QoL issues as before. The study concluded that the QoL reports appeared to stimulate the doctors into enquiring about specific aspects of health and well-being. In a later randomized controlled trial with 10 physicians and 214 patients undergoing palliative chemotherapy the authors again found that the EORTC reports stimulated more frequent discussion of health-related QoL issues and increased physician awareness with no significant effect on length of consultation. All 10 physicians and 87% of the patients believed that the reports facilitated communication [11]. Similar conclusions have also been drawn by Taenzer et al. [12] who administered a computerized version of the EORTC to 36 women attending a breast cancer clinic for follow-up. Clinic nurses and physicians indicated that this was a useful way of identifying problematic QoL issues while patients found it an acceptable way of telling staff about functional problems.

In a further study of the EORTC Velikova et al. [13] also demonstrated that doctors made significantly more enquiries about daily activities, emotional problems and work-related issues. Doctors found that even though they already knew most of the patients well, the QoL data provided new information in half of all cases. They considered that the discussion of QoL issues may have lengthened the consultations for just under a third of patients by 1 to 5 min, but considered this to be acceptable. They felt that the data enhanced communication and contributed to some management decisions such as adjusting medication, counselling about life style or stopping chemotherapy.

This study has demonstrated that with the addition of a question to gauge the level of concern associated with each of its statements, the RAQol can offer a means of identifying individual patient concerns and at the same time provide a valid, reproducible and sensitive score for monitoring the outcome of care for patient groups.


   Acknowledgments
 
This research was undertaken as part of the NHS R&D programme ‘Rheumatic Disease: Improving Outcome and Quality of Life’. The authors would like to thank all the patients who participated in this study and Whipps Cross University Hospital NHS Trust for support in providing a local research development grant.

The authors have declared no conflicts of interest.


   References
Top
 Abstract
 Introduction
 Methods
 Results
 Discussion
 References
 

  1. Guillemin F. Functional disability and quality-of-life assessment in clinical practice. Rheumatology 2000;39:17–23.[ISI][Medline]
  2. De Jong Z, Van Der Heijde D, McKenna SP, Whalley D. The reliability and construct validity of the RAQol: A rheumatoid arthritis specific quality of life instrument. Br J Rheumatol 1997;36:878–83.[Abstract/Free Full Text]
  3. Walley D, McKenna SP, de Jong Z, van der Heijde D. Quality of life in rheumatoid arthritis. Br J Rheumatol 1997;36:884–8.[Abstract/Free Full Text]
  4. Tijhius GJ, de Jong Z, Zwinderman AH et al. The validity of the Rheumatoid Arthritis Quality of Life (RAQol) questionnaire. Rheumatology 2001;40:1112–19.[Abstract/Free Full Text]
  5. Hurst NP, Jobanputra P, Hunter M, Lambert CM, Lochead A, Brown H. Validity of EuroQol—a generic health status instrument in patients with rheumatoid arthritis. Br J Rheumatol 1994;33:655–62.[Abstract/Free Full Text]
  6. Kosinski M, Zhao SZ, Dedhiya S, Osterhaus JT, Ware JE. Determining minimally important changes in generic and disease-specific health-related quality of life questionnaires in clinical trials of rheumatoid arthritis. Arthritis Rheum 2000;43;1478–87.[CrossRef][ISI][Medline]
  7. Guyatt G, Walter S, Norman G. Measuring change over time: assessing the usefulness of evaluative instruments. J Chronic Dis 1987;40:71–178.
  8. Higginson IJ, Carr AJ. Using quality of life measures in the clinical setting. Br Med J 2001;322:1297–300.[Free Full Text]
  9. Kwoh CK, Ibrahim SA. Rheumatology patient and physician concordance with respect to important health and symptom status outcomes. Arthritis Rheum 2001;45:372–7.[CrossRef][Medline]
  10. Detmar SB, Aaronson NK. Quality of life assessment in daily clinical practice: a feasibility study. Eur J Cancer 1998:34:1181–6.[CrossRef][ISI][Medline]
  11. Detmar SB, Muller MJ, Schornagel MD, Wever ED, Aaronson NK. Health-related quality of life assessments and patient-physician communication—a randomised controlled trial. J Am Med Assoc 2003:288:3027–34.
  12. Taenzer P, Speca M, Atkinson M et al. Computerised quality-of-life screening in an oncology clinic. Cancer Pract 1997;5:168–75.[ISI][Medline]
  13. Velikova G, Brown JM, Smith AB, Selby PJ. Computer-based quality of life questionnaires may contribute to doctor-patient interactions in oncology. Br J Cancer 2002;86:51–9.[CrossRef][ISI][Medline]
Submitted 9 November 2004; revised version accepted 5 August 2005.
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