Employment and the role of personal factors among patients with ankylosing spondylitis: a Dutch cross-sectional case-control study.

OBJECTIVES: To update the knowledge on employment and the role of mastery, a personal factor reflecting the level of control over life and disease, among Dutch patients with ankylosing spondylitis (AS) compared to general population subjects. METHODS: Data of persons ≤65 years participating in a Dutch cross-sectional multicentre study on social participation in AS were used. Being employed was the main outcome. Standardised employment ratios (SERs) were calculated using indirect standardisation after adjusting for age, gender and education and repeated after stratification by symptom duration tertiles. Modified Poisson regressions were performed to understand the role of mastery (Pearlin's scale) independent of sociodemographic and health-related factors. RESULTS: 214 patients and 470 controls (127 (59.3%) and 323 (68.7%) males; mean age 48.3 (SD 10.4) and 39.3 (SD 12.7) years, respectively) completed an online questionnaire. SER (95%CI) in patients was 0.83 (0.69-0.98); 0.84 (0.67-1.04) in males; 0.83 (0.59-1.07) in females. Adjusted absolute employment of patients compared to controls was 69% versus 84%; 73% versus 86% for males; 62% versus 78% for females. In multivariable analyses stratified for patients and controls, mastery was associated with being employed in patients, but only in those with low education. In controls, not mastery but higher education was associated with being employed. CONCLUSION: Our study reveals that patients suffering from AS compared to population controls are less likely to be employed. Mastery is an important personal factor associated with employment in patients but not in controls. Interventions aimed at improving employment of patients with AS should likely account for mastery.

Social Role Participation and Satisfaction With Life: A Study Among Patients With Ankylosing Spondylitis and Population Controls.

OBJECTIVE: Participation in society of persons with chronic diseases receives increasing attention. However, little is known about which components of participation are most relevant to life satisfaction. This study examines the association between several aspects of social role participation and satisfaction with life (SWL) in patients with ankylosing spondylitis (AS) compared to population controls. METHODS: In a cross-sectional study, participants completed the Social Role Participation Questionnaire (SRPQ) and SWL scale. The SRPQ assesses several dimensions of participation (importance, satisfaction with performance, and satisfaction with time and physical difficulty) in 11 roles representing 3 domains (interpersonal relations, leisure, and work). For individuals with AS and controls, the association between role domains and SWL was examined using linear regression for each participation dimension separately, in the total and the employed population, adjusting for age, sex, education, and income. RESULTS: A total of 246 AS patients (mean ± SD age 51 ± 12 years, 62% males, mean ± SD disease duration 17 ± 12 years) and 510 controls (mean ± SD age 42 ± 15 years, 70% males) were included. AS patients were more frequently (extremely) dissatisfied with life (17.9% versus 8.6%; P < 0.05). In the total and the employed population, less physical difficulty and higher satisfaction with interpersonal relations and leisure were associated with higher SWL, and this was somewhat stronger in patients than in controls (P < 0.1). In employed controls, but not in employed patients, satisfaction with work was independently associated with SWL. CONCLUSION: These findings highlight the importance of supporting persons with AS in ameliorating social role participation, particularly in areas like close relationships and leisure activities, which are typically ignored when treating AS.

Development and Validation of a Short Form of the Social Role Participation Questionnaire in Patients with Ankylosing Spondylitis.

OBJECTIVE: The Social Role Participation Questionnaire (SRPQ) assesses the influence of health on 11 specific roles and 1 general role along 4 dimensions. In this study, a shortened version of the SRPQ (s-SRPQ) was developed in patients with ankylosing spondylitis (AS) to facilitate data collection in clinical studies and practice. METHODS: Using data from 246 patients with AS and population controls, the fit of each role to the different participation dimensions, the contribution of each role to the measurement precision, and the correlation between dimensions were evaluated using item response theory. Representation of the 3 participation chapters of the International Classification of Functioning, Disability, and Health was ensured. Reliability of each dimension of both versions of the SRPQ was compared by correlating scores to the Medical Outcomes Study Short Form-36 (SF-36) and the Satisfaction With Life Scale (SWLS), and by comparing ability to discriminate between patients and controls and between patients with low and high disease activity (Bath Ankylosing Spondylitis Disease Activity Index ≥ 4). RESULTS: The s-SRPQ, which assesses participation across 6 social roles along 2 dimensions (physical difficulty and satisfaction with performance), was proposed. Both dimensions of the s-SRPQ were highly reliable (r ≥ 0.86) and were shown to have construct validity as indicated by a similar pattern of correlations with the SF-36 and SWLS as the original SRPQ dimensions. Both versions discriminated well between patients and controls and between patients with high versus low disease activity (relative validity ≥ 0.72). CONCLUSION: The s-SRPQ retains the measurement properties of the original SRPQ and seems useful for measuring the effect of AS on participation.

Social Role Participation in Patients With Ankylosing Spondylitis: A Cross-Sectional Comparison With Population Controls.

OBJECTIVE: Participation in social roles for persons with chronic disease is important for their quality of life, but interpretation of the data on participation is difficult in the absence of a benchmark. This study aimed to compare social role participation in patients with ankylosing spondylitis (AS) to population controls using the Social Role Participation Questionnaire (SRPQ). METHODS: There were 246 AS patients and 510 population controls who completed the SRPQ, which assesses participation in 11 roles (with scores ranging 1-5) across 4 dimensions (importance, satisfaction with performance, satisfaction with time, and physical difficulty), and additionally ranked their 3 most important roles. The ranking of role importance, the SRPQ dimension scores, and the gap between importance and satisfaction with performance of roles were compared between patients and controls. RESULTS: Patients (62% male; mean ± SD age 51 ± 12 years) and controls (70% male; mean ± SD 42 ± 15 years) ranked intimate relationships, relationships with children/stepchildren/grandchildren, and employment as the most important roles. Compared to controls, patients gave higher scores on the SRPQ to importance (3.75 versus 3.43), but reported lower satisfaction with performance (3.19 versus 3.58) and greater physical difficulty (3.87 versus 4.67) (P ≤ 0.05 for all). The largest differences in gaps between importance and satisfaction with performance for patients compared to controls were seen in the physical leisure, hobbies, and traveling and vacation categories, in which patients assigned higher importance but reported especially low satisfaction. CONCLUSION: As society places increasing emphasis on individual responsibility to participate fully in social roles, the current data suggest that health care providers should pay more attention to participation restrictions experienced by patients with AS.

Social Role Participation Questionnaire for patients with ankylosing spondylitis: translation into Dutch, reliability and construct validity.

OBJECTIVE: The Social Role Participation Questionnaire (SRPQ) assesses the influence of health on participation in 11 specific and one general participation role across 4 participation dimensions: 'importance', 'satisfaction with time', 'satisfaction with performance' and 'physical difficulty'. This study aimed to translate the SRPQ into Dutch, and assess the clinimetric properties and aspects of its validity among patients with ankylosing spondylitis (AS). METHODS: Translation was performed using the dual panel approach. For each participation dimension, internal consistency, test-retest reliability (n=31), and construct validity were assessed in 246 patients with AS. RESULTS: The translation required only minor adaptations. Cronbach αs were α≥0.7. A strong correlation was present between satisfaction with 'time' and 'performance'(r=0.85). Test-retest reliability was satisfactory (κ=0.79-0.95). Correlations with participation domains of the Short-Form Health Survey 36 (SF-36), the WHO Disease Assessment Score II, and generic as well as disease-specific health outcomes (Physical and Mental component scale of the SF-36, Satisfaction With Life Scale, Bath Ankylosing Spondylitis Disease Index (BASDAI), Bath Ankylosing Spondylitis Functioning Index (BASFI)) were at least moderate (r=-0.41 to 0.75) for all dimensions except for 'role importance' where correlations were weak (r≤40). Discriminative ability across 5 self-reported health states was good for all dimensions (p<0.01). The 'general participation' role showed similar reliability and validity for each dimension, as the average of the all 11 roles. CONCLUSIONS: The Dutch version of the SRPQ is available to help understand social role participation of patients with AS. The dimension 'role importance' measures a distinct aspect of participation. The general participation item was a good global measure of participation.

Accelerometer Quantification of Physical Activity and Activity Patterns in Patients with Ankylosing Spondylitis and Population Controls.

OBJECTIVE: To compare the total amount of physical activity (TPA) and time spent in various activity intensities of patients with ankylosing spondylitis (AS) and population controls, and to explore factors related to physical activity (PA). METHODS: Subjects were asked to wear a triaxial accelerometer for 7 days and to complete a series of questionnaires. Multivariable regressions were used to assess generic determinants of TPA in patients and controls, and in patients to explore demographic and disease-specific determinants of various PA intensities. RESULTS: One hundred and thirty-five patients [51 ± 13 yrs, 60% men, body mass index (BMI) 26.0 ± 4.3 kg/m(2)] and 99 controls (45 ± 12 yrs, 67% men, BMI 25.1 ± 4.3 kg/m(2)) were included. Patients did not differ from controls regarding TPA (589 vs 608 vector count/min, p = 0.98), minutes/day spent in sedentary (524 vs 541, p = 0.17), and light PA (290 vs 290 p = 0.95), but spent fewer minutes/day in moderate to vigorous PA (MVPA; 23 vs 30 min/day, p = 0.006). Perceived functional ability (physical component summary of the Medical Outcomes Study Short Form-36) and BMI were associated with TPA independent of having AS (p interaction = 0.21 and 0.94, respectively). Additional analyses in patients showed that time spent in MVPA was negatively influenced by BMI, physical function (Bath AS Functional Index), and disease duration. In patients ≥ 52 years old, a higher Bath AS Disease Activity Index was associated with less time spent in sedentary and more time spent in light activities. CONCLUSION: Compared with controls, patients with AS had similar TPA, but may avoid engagement in higher intensities of PA. Lower levels of functional ability and higher BMI were associated with lower TPA in both patients and controls.