Cross-cultural adaptation and psychometric testing of the Dutch and German versions of the Evaluation of Daily Activity Questionnaire in people with rheumatoid arthritis

The Evaluation of Daily Activity Questionnaire (EDAQ) is a detailed patient-reported outcome measure of activity ability. The objective of this research was to assess the linguistic and cross-cultural validity and psychometric properties of the EDAQ in rheumatoid arthritis for Dutch and German speakers. The EDAQ was translated into Dutch and German using standard methods. A total of 415 participants (Dutch n = 252; German n = 163) completed two questionnaires about four weeks apart. The first included the EDAQ, Health Assessment Questionnaire (HAQ) and 36-item Short-Form v2 (SF-36v2) and the second, the EDAQ only. We examined construct validity using Rasch analysis for the two components (Self-Care and Mobility) of the Dutch and German EDAQ. Language invariance was also tested from the English version. We examined internal consistency, concurrent and discriminant validity and test–retest reliability in the 14 EDAQ domains. The Self-Care and Mobility components satisfied Rasch model requirements for fit, unidimensionality and invariance by language. Internal consistency for all 14 domains was mostly good to excellent (Cronbach’s alpha ≥ 0.80). Concurrent validity was mostly strong: HAQ rs = 0.65–0.87; SF36v2 rs = − 0.61 to − 0.87. Test–retest reliability was excellent [ICC (2,1) = 0.77–0.97]. The EDAQ has good reliability and validity in both languages. The Dutch and German versions of the EDAQ can be used as a measure of daily activity in practice and research in the Netherlands and German- speaking countries

Recovery and the use of postoperative physical therapy after total hip or knee replacement

BACKGROUND: Total hip or knee arthroplasties (THA/TKA) show favorable long-term effects, yet the recovery process may take weeks to months. Physical therapy (PT) following discharge from hospital is an effective intervention to enhance this recovery process. To investigate the relation between recovery and postoperative PT usage, including the presence of comorbidities, 6 months after THA/TKA. METHODS: Multicenter, observational study in primary THA/TKA patients who completed preoperative and 6 months postoperative assessments. The assessments included questions on PT use (yes/no and duration; long term use defined as ≥ 12 weeks), comorbidities (musculoskeletal, non-musculoskeletal, sensory comorbidities and frequency of comorbidities). Recovery was assessed with the HOOS/KOOS on all 5 subdomains. Logistic regression with long term PT as outcome was performed adjusted for confounding including an interaction term (comorbidity*HOOS/KOOS-subdomain). RESULTS: In total, 1289 THA and 1333 TKA patients were included, of whom 95% received postoperative PT, 56% and 67% received postoperative PT ≥ 12 weeks respectively. In both THA and TKA group, less improvement on all HOOS/KOOS domain scores was associated with ≥ 12 weeks of postoperative PT (range Odds Ratios 0.97–0.99). In the THA group the impact of recovery was smaller in patient with comorbidities as non- musculoskeletal comorbidities modified all associations between recovery and postoperative PT duration (Odds Ratios range 1.01–1.05). Musculoskeletal comorbidities modified the associations between Function-in-Daily-Living-and Sport-and-recreation recovery and postoperative PT. Sensory comorbidities only had an effect on Sport-and-recreation recovery and postoperative PT. Also the frequency of comorbidities modified the relation between Function-in-Daily-Living, pain and symptoms recovery and postoperative PT. In the TKA group comorbidity did not modify the associations. CONCLUSION: Worse recovery was associated with longer duration of postoperative PT suggesting that PT provision is in line with patients’ needs. The impact of physical recovery on the use of long-term postoperative PT was smaller in THA patients with comorbidities. TRIAL REGISTRATION: Registered in the Dutch Trial Registry on March 13, 2012. TRIAL ID NTR3348; registration number: P12.047. https://www.trialregister.nl/trial/3197. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12891-022-05429-z

Prevalence of BRCA1 in a hospital-based population of Dutch breast cancer patients

The prevalence of disease-related BRCA1 mutations was investigated in 642 Dutch breast cancer patients not selected for family history or age at diagnosis. They were tested for germline mutations in the BRCA1 gene using an assay which detects small deletions and insertions (DSDI), as well as the two major genomic founder deletions present in the Dutch population. Data on family history and bilateral breast cancer were obtained retrospectively. Ten protein truncating mutations were detected and one in-frame deletion with an unknown relation to disease risk. Four patients carried the Dutch founder deletion of exon 22. Based on these results the estimated prevalence of breast cancer in the general population in the Netherlands attributable to BRCA1 mutations is 2.1%. Under 40 years-of-age and under 50 years-of-age this prevalence is 9.5% and 6.4%, respectively. All mutation carriers were under 50 years-of-age at diagnosis of the first breast cancer, and five did not have any relative with breast cancer. The proportions of bilateral breast cancer in the mutation carriers and non-carriers did not differ from each other. These data indicate that in the general Dutch breast cancer population the great majority of BRCA1 mutations will be found in women diagnosed under 50 years-of-age. © 2000 Cancer Research Campaig

Psychometric testing of the Dutch evaluation of daily activity questionnaire in rheumatoid arthritis

Background: The Evaluation of Daily Activity Questionnaire (EDAQ) is a patient reported measure of activity limitations in Rheumatoid Arthritis (RA) and other musculoskeletal conditions, for which there is a Swedish (1) and an updated English version (2-4). The English version was translated into Dutch, and linguistically validated, with phrasing changes made following cognitive debriefing interviews with six Dutch people with RA. The Dutch EDAQ includes 138 items in 14 ‘domains’ (Eating/ Drinking; Personal Care; Dressing; Bathing; Cooking; Moving Indoors; House Cleaning; Laundry; Moving and Transfers; Moving Outdoors; Gardening/Household Maintenance; Caring; and Leisure/ Social Activities). Each domain is split into two sections: one (A) scores whether activities can be performed without aids, alternate methods or help; and another (B) which scores whether the activities can be performed with aids or alternate methods. All items are scored on a 0-3 scale (no difficulty to unable to do). Objectives: To test the reliability and validity of the Dutch version of the EDAQ in people with RA in the Netherlands. Methods: Participants from an out-patient Rheumatology clinic (Reinier de Graaf Hospital, Delft) completed postal questionnaires of demographic questions, the EDAQ, HAQ, SF36v2, RAQOL, a hand pain numeric rating scale (NRS) and a current condition severity scale. Three weeks later, the EDAQ was mailed again. Test-retest reliability of domain scores was evaluated using nonparametric correlations. Internal consistency was tested using Cronbach’s alpha. Validity of the 14 domains of the EDAQ against the other measures was assessed with non-parametric correlations. Results: 252 people participated: 155 women and 93 men; age = 65.16 (SD 13.45) years; RA duration =11.75 years (SD 9.93). 68 (27%) were employed; 20 had children <18y at home. Average pain score = 3 (IQR 1-6) and fatigue = 4 (IQR 2-7). 155 (62%) completed Test 2 and test-retest reliability of total domain scores was excellent for nine domains (rs= 0.81 -0.88) and moderate-substantial for five (rs=0.56-0.78). Internal consistency was high in all domains: Cronbach’s alpha= 0.79-0.92 for Section A. All domains of the EDAQ correlated significantly (p<0.001) with: HAQ rs= 0.51- 0.88; SF36v2 (Physical Function) rs= -0.55 to -0.87; SF36v2 Bodily Pain rs=0.44-0.67; SF36v2 (Vitality) rs= -0.35 to-0.62; RAQOL rs= 0.50-0.83; and hand pain rs=0.46-0.64. An exception was the ‘Caring’ domain as many did not have childcare responsibilities, and thus validity was lower compared to the above variables, although still significant (p<0.01; rs=0.16 to 0.31). Conclusions: The Dutch version of the EDAQ is a valid and reliable measure of daily activity in people with RA. It can be used in both clinical practice and research. References: (1) Nordenskiold et al (1998) Clin Rheumatol 17:6-16. (2) Hammond et al (2015) HQLO 12:143; (3) Hammond et al (2015) Rheumatology 54:1605-1615. (4) Hammond et al (2015) Br J Occ Ther 78:144-157. Acknowledgement: This research was funded by a EULAR Health Professionals Research Grant

Improving care for patients with osteoarthritis in five european countries: the jigsaw-e patient panel

info:eu-repo/semantics/publishedVersio

The influence of preoperative determinants on quality of life, functioning and pain after total knee and hip replacement:A pooled analysis of Dutch cohorts

Background: Previous research has identified preoperative determinants that predict health related quality of life (HRQoL), functioning and pain after total knee or hip arthroplasty (TKA/THA), but these differed between studies and had opposite directions. This may be due to lack of power and not adjusting for confounders. The present study aims to identify the preoperative determinants that influence health related quality of life (HRQoL), functioning and pain after total knee or hip arthroplasty (TKA/THA). Methods: We pooled individual patient from 20 cohorts with OA patients data (n = 1783 TKA and n = 2400 THA) in the Netherlands. We examined the influence of age, gender, BMI and preoperative values of HRQoL, functioning and pain on postoperative status and total improvement. Linear mixed models were used to estimate the effect of each preoperative variable on a particular outcome for each cohort separately. These effects were pooled across cohorts using a random effects model. Results: For each increase in preoperative point in HRQoL, the postoperative HRQoL increased by 0.51 points in TKA and 0.37 points in THA (SF-36 scale). Similarly, each point increase in preoperative functioning, resulted in a higher postoperative functioning of 0.31 (TKA) and 0.21 (THA) points (KOOS/HOOS-ADL scale). For pain this was 0.18 (TKA) and 0.15 (THA) points higher (KOOS/HOOS-pain scale) (higher means less pain). Even though patients with better preoperative values achieved better postoperative outcomes, their improvement was smaller. Women and patients with a higher BMI had more pain after a TKA and THA. Higher age and higher BMI was associated with lower postoperative HRQoL and functioning and more pain after a THA.Conclusions: Patients with a better preoperative health status have better outcomes, but less improvement. Even though the independent effects may seem small, combined results of preoperative variables may result in larger effects on postoperative outcomes.</p

How do we perceive activity pacing in rheumatology care? An international delphi survey

Background Activity pacing is a recommended non-pharmacological intervention for the management of rheumatic and musculoskeletal diseases in international clinical guidelines. In clinical practice, activity pacing aims at adapting daily activities, and is often an important component of self-management programs. However, despite its wide endorsement in clinical practice, to date activity pacing is still a poorly understood concept. Objectives To achieve consensus by means of an international Delphi exercise on the most important aspects of activity pacing as an intervention within non-pharmacological rheumatology care. Methods An international, multidisciplinary expert panel comprising 60 clinicians and/or healthcare providers experienced with activity pacing across 12 different countries participated in a Delphi survey. Over four Delphi rounds, the panelists identified and ranked the most important goals of activity pacing, behaviours of activity pacing (the actions people take to meet the goal of activity pacing), strategies to change behaviour in activity pacing (for example goal setting) and contextual factors that should be acknowledged when instructing activity pacing. Besides, topics for future research on activity pacing were formulated and prioritized. Results Of the 60 panelists, nearly two third (63%) completed all four Delphi rounds. The panel prioritized 9 goals, 11 behaviours, 9 strategies to change behaviour and 10 contextual factors of activity pacing. These items were integrated into a consensual list containing the most important aspects of activity pacing interventions in non-pharmacological rheumatology care. Furthermore, the Delphi panel prioritized 9 topics for future research on activity pacing which were included in a research agenda. This agenda highlights that future research should focus on the effectiveness of activity pacing interventions and on appropriate outcome measures to assess its effectiveness, as selected by 64% and 82% of the panelists, respectively. Conclusions The diversity and number of items included in the consensual list developed in the current study reflect the heterogeneity of the concept of activity pacing. This study is an important first step to achieve better transparency and homogeneity within the concept of activity pacing for clinical practice and research

Are pain, functional limitations and quality of life associated with objectively measured physical activity in patients with end-stage osteoarthritis of the hip or knee?

Objectives: Physical activity is promoted in patients with hip or knee osteoarthritis (OA), yet little is known about its relationship with symptoms, functional limitations and Quality of Life (QoL). We investigated if OA-associated pain, functional limitations and QoL are associated with objectively measured physical activity in patients with end-stage hip/knee OA. Methods: Cross-sectional study including patients scheduled for primary total hip/knee arthroplasty. Patients wore an accelerometer (Activ8) with physical activity assessed over waking hours, and expressed as number of activity daily counts (ADC) per hour, %time spent on physical activity i.e. walking, cycling or running (%PA), and %time spent sedentary (%SB). Pain, functional limitations and joint-specific and general QoL were assessed with the Hip disability/Knee Injury and Osteoarthritis Outcome Score (HOOS/KOOS) and the Short Form (SF)-12. Multivariate linear regression models with the three to Z-scores transformed parameters of physical activity as dependent variables and adjusted for confounding, were conducted. Results: 49 hip and 48 knee OA patients were included. In hip and knee OA patients the mean number of ADC, %PA and %SB were 18.79 ± 7.25 and 21.19 ± 6.16, 14 ± 6.4 and 15 ± 5.0, and 66 ± 10.5 and 68 ± 8.7, respectively. In hip OA, better joint-specific and general QoL were associated with more ADC, (β 0.028; 95%CI:0.007–0.048, β0.041; 95%CI:0.010–0.071). Also, better general QoL was associated with the %PA (β 0.040, 95%CI:0.007–0.073). No other associations were found. Conclusion: Whereas QoL was associated with physical activity in hip OA, pain and functional limitations were not related to objectively measured physical activity in patients with end-stage hip or knee OA