The Journal for Nurse Practitioners
Volume 6, Issue 3 , Pages 201-205, March 2010

Nurse-Guided Completion of the BASDAI Questionnaire in Ankylosing Spondylitis Patients with Low Literacy

  • Umut Kalyoncu

      Affiliations

    • Umut Kalyoncu, MD, Dilek Nakas, Omer Karadag, MD, Ali Akdogan, MD, Sedat Kiraz, MD, Meral Calguneri, MD, and Ihsan Ertenli, MD, are in the rheumatology division of Hacettepe University in Ankara, Turkey.
    • ,
  • Dilek Nakas

      Affiliations

    • Umut Kalyoncu, MD, Dilek Nakas, Omer Karadag, MD, Ali Akdogan, MD, Sedat Kiraz, MD, Meral Calguneri, MD, and Ihsan Ertenli, MD, are in the rheumatology division of Hacettepe University in Ankara, Turkey.
    • ,
  • Mutlu Hayran

      Affiliations

    • Mutlu Hayran, MD, is in the preventive oncology department at the university.
    • ,
  • Laure Gossec

      Affiliations

    • Laure Gossec, MD, is part of the medicine faculty at the Paris Descartes University in Paris, France.
    • ,
  • Omer Karadag

      Affiliations

    • Umut Kalyoncu, MD, Dilek Nakas, Omer Karadag, MD, Ali Akdogan, MD, Sedat Kiraz, MD, Meral Calguneri, MD, and Ihsan Ertenli, MD, are in the rheumatology division of Hacettepe University in Ankara, Turkey.
    • ,
  • Ali Akdogan

      Affiliations

    • Umut Kalyoncu, MD, Dilek Nakas, Omer Karadag, MD, Ali Akdogan, MD, Sedat Kiraz, MD, Meral Calguneri, MD, and Ihsan Ertenli, MD, are in the rheumatology division of Hacettepe University in Ankara, Turkey.
    • ,
  • Sedat Kiraz

      Affiliations

    • Umut Kalyoncu, MD, Dilek Nakas, Omer Karadag, MD, Ali Akdogan, MD, Sedat Kiraz, MD, Meral Calguneri, MD, and Ihsan Ertenli, MD, are in the rheumatology division of Hacettepe University in Ankara, Turkey.
    • ,
  • Meral Calguneri

      Affiliations

    • Umut Kalyoncu, MD, Dilek Nakas, Omer Karadag, MD, Ali Akdogan, MD, Sedat Kiraz, MD, Meral Calguneri, MD, and Ihsan Ertenli, MD, are in the rheumatology division of Hacettepe University in Ankara, Turkey.
    • ,
  • Ihsan Ertenli

      Affiliations

    • Umut Kalyoncu, MD, Dilek Nakas, Omer Karadag, MD, Ali Akdogan, MD, Sedat Kiraz, MD, Meral Calguneri, MD, and Ihsan Ertenli, MD, are in the rheumatology division of Hacettepe University in Ankara, Turkey.

Article Outline

Abstract 

The objective of this study was to assess nurse-guided patient completion of the Bath Ankylosing Spondylitis Activity Index (BASDAI). Between April and June 2008, all consecutive patients diagnosed with ankylosing spondylitis in a university clinic who were over 18 years old were enrolled in this study. Demographic data and socioeconomic status were collected by a questionnaire. First, the BASDAI forms were completed by the patient (self-report). The forms were completed again by the patient, this time with the guidance of an experienced study nurse (nurse-guided). If the absolute value of difference of self-reported and nurse-guided BASDAI was $ 1 cm (the minimum clinically important difference), these patients were defined as discordant. One hundred sixty-two patients (101 male, 62%; 61 female, 38%); mean age 35.6 years (standard deviation [SD] 11.4); and with a mean disease duration of 12.7 years (SD 7.8), were enrolled in the study. Mean BASDAI scores were no different between self-reported (3.07, SD 2.31) and nurse-guided (2.89, SD 2.31) scores. Thirty-eight patients (23.4%) had discordant results. Comparing the discordant to non-discordant patients, the discordant patients had more active disease (53% versus 27%, P = 0.004); were older (39 years, SD 11, versus 34 years, SD 11, P = 0.029); were more frequently female (58% versus 32%, P = 0.003); had # 8 years' education (55% versus 22%, P < 0.001); and read the newspaper less (24% versus 50%, P = 0.005), respectively. After logistic regression analysis, the main factors explaining the discordance were: length of education, 3.1 (range 1.21–7.88); age, 1.19 (range 0.97–1.46); and frequency of newspaper reading, 2.63 (0.96–7.18). The BASDAI should be carefully evaluated in older patients with low literacy, and nurse-guided questionnaire completion may be an alternative approach in this subgroup.

Keywords:  ankylosing spondylitis , BASDAI , low literacy , nurse guide

 

Ankylosing spondylitis (AS) is a chronic, slowly progressive, inflammatory disease characterized by 3 major musculoskeletal features: axial inflammation, peripheral arthritis, and enthesis.1 There is no gold standard available for measuring disease activity; however, many methods have been developed to assess signs and symptoms of AS.1 In contrast to rheumatoid arthritis, objective measures such as C-reactive protein (CRP) and Westergren erythrocyte sedimentation rate (ESR) do not correctly reflect disease activity, and their use in AS is controversial.1

The Bath Ankylosing Spondylitis Activity Index (BASDAI) questionnaire is useful in the detection of AS disease activity.2 It has been largely validated; in fact, the ASAS (Assessment in SpondyloArthritis International Society) recommends that the original and translated BASDAI forms be used in rheumatology practice before the decision is made whether to introduce anti-tumor necrosis factor (TNF) treatments.3 The original BASDAI questionnaire was developed as a self-reported composite index.

The BASDAI includes 6 topics: fatigue, axial pain, peripheral joint pain, entheseal pain, morning stiffness severity, and morning stiffness duration.4 Visual analog scales (VAS) are used to measure the patients' response to questions.2 The VAS is widely used for the assessment of pain in chronic diseases. However, Ferraz et al4 demonstrated that the correlation of first and second assessment of VAS was much lower in illiterate patients than in literate patients, 0.71 and 0.94, respectively. These data are also concordant with daily practice; many physicians feel that some patients do not understand the wording of VAS.

Furthermore, the questionnaires differed by patients due to social, cultural, economic, and other differences. Nurse-guided patient-reported (nurse-guided) questionnaire results are not commonly used; however, we believe that some of the results of questionnaires completed by patients alone (self-questionnaires) may not reflect the true status, particularly in patients with low socioeconomic status.

The main objective of this study was to perform a pilot investigation of nurse-guided completion of the BASDAI, and to evaluate differences between self-reported BASDAI and nurse-guided BASDAI results, as well as factors explaining differences in patients diagnosed with AS.

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Methods 

This was an observational cross-sectional monocenter study.

Inclusion Criteria 

Between April and June 2008, all consecutive patients diagnosed with AS in the Hacettepe University Rheumatology outpatient department who gave informed consent and were 18 years and older were enrolled in this study. The diagnosis of AS was confirmed by modified New York criteria.5

Data Collection 

Demographic data such as age, sex, and disease duration were collected. The socioeconomic status was assessed by a study nurse, with a questionnaire that included: monthly salary classified into 3 categories (low, medium, and high);6 location of residence (village, town, city); educational status (≤ 5 years, 8 years, 11 years, and > 11 years); newspaper reading (every day, 2 to 3 times a week, once a week, less than once a week, and never).

Acute-phase reactants such as ESR and CRP were evaluated. Physician global assessment was done by one physician (UK) who was completely unaware of self-reported and nurse-guided BASDAI scores.

Self-Reported and Nurse-Guided BASDAI 

Ten-centimeter, unmarked, horizontal VAS rulers were used to measure the patients' response to the first 5 questions of the Turkish BASDAI. The Turkish validation of the BASDAI was published in 2005.7 Each VAS was scored from 0 to 10, where 0 indicated “none” and 10 indicated “severe activity.” The sixth question was a 0- to 2-hour period (marked at every quarter-hour) used to measure the duration of morning stiffness. Active disease was defined as ≥ 4.0 cm total self-reported BASDAI score.3

First, the BASDAI forms were completed by the patient. Then, the BASDAI forms were completed again, with the guidance of an experienced study nurse. The nurse read all of the questions one by one, and asked, “Did you understand the question?” If patients did not understand the question, the nurse explained the question again. The nurse also explained “visual analog scales” if patients did not understand this. The nurse explained that the answers must indicate activity over one week.

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Differences Between BASDAI Results 

The minimum clinically important difference is the minimum level of change of an outcome measure that is considered to be clinically relevant. Pavy et al8 showed, in a prospective study, that the minimum clinically important difference is 1 cm on the VAS for BASDAI. The difference of self-reported BASDAI score and nurse-guided BASDAI score was calculated separately for all patients. If the absolute value of the difference was < 1 cm on the VAS of the BASDAI, these patients were defined as concordant patients. If the absolute value of difference was ≥ 1 cm, these patients were defined as discordant patients.

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Statistics 

Univariate comparisons between concordant and discordant patients were performed using Fisher exact test for categorical data, t test for normal distribution, and Mann-Whitney U test for non-normally distributed continuous variables. A multivariate logistic regression was performed to detect factors associated with discordance. A P value < 0.05 was used to infer statistical significance, while a type I error level of 10% was used to identify potentially significant variables if accompanied by high effect sizes. Correlation between BASDAI and the physician's global assessment was calculated by Pearson correlation.

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Results 

Patient Characteristics 

One hundred sixty-two patients (101 male [62%]; 61 female [38%]) were enrolled in the study (Table 1). Mean age was 35.6 years (standard deviation [SD] 11.4), and mean disease duration was 12.7 years (SD 7.8). Forty-four patients (27%) had no previous experience with the BASDAI form.

Table 1. Characteristics of AS Patients—Self-Reported and Nurse-Guided BASDAI Results
nΔ BASDAI > 1 cm absolute differenceΔ BASDAI between < 1 cm absolute differenceP
Age (years) mean (SD)35 (11)39 (11)34 (11)0.029
Sex (%)
 Male101 (62)16 (42)85 (68)0.003
 Female61 (38)22 (58)39 (32)
Monthly salary (%)
 Low25 (15)8 (21)17 (14)> 0.05
 Medium105 (65)21 (55)84 (68)
 High32 (20)9 (24)23 (19)
Level of education: years (%)
 ≤ 849 (30)21 (55)28 (22)
 > 8113 (70)17 (45)96 (78)< 0.001
Residence location (%)
 City116 (72)29 (76)87 (70)> 0.05
 Others46 (28)9 (24)37 (30)
Newspaper reading (%)
 Every day71 (44)9 (24)62 (50)0.005
 Others91 (56)29 (76)62 (50)
PGA mean (SD)26 (17)27 (15)25 (18)> 0.05
BASDAI experience (%)
 No44 (27)11 (29)33 (27)
 Yes118 (73)27 (71)91 (73)> 0.05
Disease status (%)
 Active54 (33)20 (53)34 (27)0.004
 Inactive108 (67)18 (47)90 (73)
ESR (mm/hr): mean (SD)15 (17)22 (18)13 (16)0.007
CRP (mg/dl): mean (SD)1.19 (1.86)1.33 (1.58)1.14 (1.95)> 0.05

P-values are BASDAI > 1 cm absolute difference versus Δ BASDAI < 1 cm absolute difference ESR, erythrocyte sedimentation rate; CRP, C-reactive protein; PGA, physician's global assessment. Total number of patients in trial was 162.

Self-Reported and Nurse-Guided BASDAI 

Mean self-reported BASDAI scores (3.07 cm, SD 2.31) were slightly higher than nurse-guided BASDAI scores (2.89 cm, SD 2.31; P > 0.05). In all, 108 patients' (66.6%) self-reported BASDAI scores were less than 4 cm. Seven of 108 (6.4%) patients had > 4.0-cm scores when assessed by nurse-guided BASDAI. On the other hand, 12 of 54 (22.2%) patients who had total self-reported BASDAI scores ≥ 4.0 cm had < 4.0 cm scores when compared to nurse-guided BASDAI scores.

Discordance 

Thirty-eight patients (23.4%) had > 1 cm absolute difference between self-reported BASDAI and nurse-guided BASDAI scores (discordant patients) (Table 1). Comparing discordant to non-discordant patients, the discordant patients had more active disease (53% versus 27%, P = 0.004); were older (mean 39 years, [SD 11] versus 34 years, [SD 11]; P = 0.029); were more frequently female (58% versus 32%, P = 0.003); frequently had ≤ 8 years' education (55% versus 22%, P < 0.001); and were less-frequent regular newspaper readers (24% versus 50%, P = 0.005), respectively. After logistic regression analysis, the main factors explaining the discordance of self-reported and nurse-guided BASDAI scores were: length of education (≤ 8 years versus > 8 years, relative risk [RR] 3.1, 95% confidance interval [CI] 1.21–7.88]); age (each 5-year increment) (RR 1.19, CI 0.97–1.46); and frequency of newspaper reading (every day versus others) (RR 2.63, CI 0.96–7.18).

Correlation With Physician's Global Assessment 

The correlation of self-reported BASDAI (r = 0.67, P < 0.001) and nurse-guided BASDAI (r = 0.71, P < 0.001) with the physician's global assessment was very high. Similarly, the correlation of BASDAI with the physician's global assessment for concordant patients was also very high for self-reported (r = 0.77, P < 0.001) or nurse-guided (r = 0.77, P < 0.001) BASDAI. On the other hand, this correlation for discordant patients was low for self-reported BASDAI (r = 0.36, P = 0.031), and moderate for nurse-guided BASDAI (r = 0.46, P = 0.004).

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Discussion 

We report the first nurse-guided assessment of AS activity by BASDAI. Although mean scores were similar with both techniques, 24% of patients had discordant results, as assessed using minimum clinically important difference. The discordance between self-reported and nurse-guided BASDAI was explained by low education levels. In this study, there was excellent correlation between the physician's global assessment and self- and/or nurse-guided BASDAI in concordant patients (almost 76% of all patients). Nevertheless, the correlation of the physician's global assessment and BASDAI were decreased markedly in discordant patients, in particular, with self-reported BASDAI. In these patients, correlation was better with nurse-guided BASDAI.

There is no gold standard for the assessment of disease activity in AS patients. However, the self-reported BASDAI questionnaire is probably the best currently available technique for assessment of disease acitivity. Although BASDAI validation has been performed in Turkey,7 some patients do not understand the BASDAI questions. In rheumatology practice, several frequent domains, ie, pain, patient global assessment, fatigue, and BASDAI are assessed by VAS. Because of its simplicity, VAS is a useful assessment for patient-reported outcomes. However, there are some limits to the use of VAS. Elderly persons, low-literacy populations, and some cultural groups have difficulties conceptualizing VAS.9 Our results supported these limitations of VAS: elderly and low-literacy patients had more discordant results when assessed by self-reported and nurse-guided VAS.

According to ASAS recommendations, active disease status is mandatory for the initiation of anti-TNF therapy.3 The presence of active disease is defined by sustained BASDAI of at least 4/10 and an expert opinion based on clinical features, acute phase reactants, and imaging modalities. ASAS recommendations support that BASDAI is an important parameter for the assessment of disease activity.3 In our study, only 6% of self-reported BASDAI scores were changed from low to high activity when a nurse guided the questionnnaire; on the contrary, 22% of self-reported BASDAI scores were changed from high to low activity when nurse-guided. These results suggest that patients with active disease who have self-reported BASDAI scores ≥ 4 cm may tend to overestimate their activity, and the initiation of anti-TNF therapy may be unnecessary in some low-literacy patients.

It is important to take into account the patients' perspective in rheumatoid arthritis10 and AS.11 Our results may be considered a contradiction to patients' perspectives; however, the discussion of the concept of using patient-reported outcomes was not the aim of this study, but rather the technique used to collect them. Our study suggests that the interpretation of patient-reported outcomes using VAS and, in particular, the BASDAI, should take into account patients' educational status and cooperation in completing the questionnaires.

There are some limitations of our study. Self-reported BASDAI is a universal and valid measure for both clinical practice and trials; however, there is no validation of nurse-guided BASDAI. Elderly and low-literacy patients may be influenced more easily, eg, a nurse's comments may change patients' considerations. However, an experienced study nurse should not make any comments on patients' disease activity or try to influence the results. Finally, there is the feasibility issue of nurse-guided BASDAI, as it is more labor intensive.

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Conclusions 

To the best of our knowledge, this study is the first nurse-guided BASDAI experience for the assessment of patients diagnosed with AS. Although BASDAI was originally designed as a self-reported test, it should be carefully evaluated in older patients with low literacy. Nurse-guided BASDAI assessment may be an alternative approach in this subgroup. The validation and reproducibility of nurse-guided BASDAI should be assessed in other studies.

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References 

  1. Zochling J . Assessment and treatment of ankylosing spondylitis: current status and future directions . Curr Opin Rheumatol . 2008;20:398–403
  2. Garrett S , Jenkinson T , Kennedy LG , Whitelock H , Gaisford P , Calin A . A new approach to defining disease status in ankylosing spondylitis: the Bath Ankylosing Spondylitis Disease Activity Index . J Rheumatol . 1994;21:2286–2291
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  10. Kalyoncu U, Dougados M, Daurès JP, Gossec L. Reporting of patient-reported outcomes in recent trials in rheumatoid arthritis: a systematic literature review. [published online ahead of print March 28, 2008]. Ann Rheum Dis.
  11. Spoorenberg A , van Tubergen A , Landewé R , et al.   Measuring disease activity in ankylosing spondylitis: patient and physician have different perspectives . Rheumatology . 2005;44:789–795

 In compliance with national ethical guidelines, the authors report no relationships with business or industry that would pose a conflict of interest.

PII: S1555-4155(09)00399-7

doi:10.1016/j.nurpra.2009.06.002

The Journal for Nurse Practitioners
Volume 6, Issue 3 , Pages 201-205, March 2010

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