Development of patient-centred standards of care for osteoarthritis in Europe: the eumusc.net-project.

OBJECTIVE: The eumusc.net project is an initiative founded by the European Community and the European League Against Rheumatism. One aim of the project was to facilitate equal standards for musculoskeletal health across Europe. The aim of this work-package was to develop patient-centred and consensus based standards of care (SOC) for osteoarthritis (OA), which should be available in a professional and a patient version. METHODS: A systematic review concerning guidelines dealing with OA was conducted. Furthermore, experts in musculoskeletal diseases were contacted to ensure that 'grey' literature was not excluded. Documents that fulfilled predefined inclusion/exclusion criteria were included and all interventions for OA were extracted and categorised. Based on this list of interventions, a three round Delphi exercise with an international and multidisciplinary expert panel, including patient research partners, was performed to achieve expert consensus. RESULTS: Six documents were included and used for further analysis. Out of them, 46 interventions have been extracted and 10 consensus based SOC were formulated. In addition, a patient version, written in a lay-understandable wording and in the format of checklist questions was developed. An example is SOC 5: "People with OA should achieve optimal pain control using pharmacological and non-pharmacological means." The matching patient-centred checklist question reads: "Do I know how to control pain associated with OA?" CONCLUSIONS: The SOC for OA will be available in the 23 languages of the European Union to enhance unified information to patients and professionals and to further harmonise the treatment/care of OA within Europe.

Translation and preliminary validation of the English version of the DUX questionnaire for lower extremity bone tumor patients (Bt-DUX): a disease-specific measure for quality of life.

PURPOSE: To translate the Dutch DUX questionnaire for lower extremity bone tumor patients (Bt-DUX), a disease-specific quality of life (QoL) instrument, into the English (UK) language and preliminary validate the English version in patients who were treated for lower-extremity bone tumors. METHODS: Adaptation and translation process included forward translation, back-translation, and a review of the back-translation by an expert committee. Internal consistency and validity of the translated questionnaire were examined in a sample of adolescents treated for lower extremity osteosarcoma in the United Kingdom. Assessments included the Bt-DUX, the Toronto Extremity Salvage Score (TESS), the Short Form (SF)-36, and the TNO-AZL Questionnaire for Adult's Quality of Life (TAAQOL). RESULTS: Seventeen patients (7 ♂ and 10 ♀), median age 19.9 (range: 16-25) years completed the questionnaires. Mean Bt-DUX score was 38.8 (range: 23-78), with Cronbach's α being 0.95 domain-total correlations ranged between 0.84 and 0.93 (P < 0.01). Spearman's correlation coefficients between the Bt-DUX total and domain scores and corresponding TAAQOL and SF-36 scores were overall moderate to good and reaching statistical significance in a most cases. CONCLUSION: Preliminary evidence suggests that the English Bt-DUX translation is a valid disease-specific instrument for evaluating QoL of adolescents with lower extremity bone cancer.

A comparative study on the prevalence of musculoskeletal complaints among musicians and non-musicians.

BACKGROUND: Research comparing the frequency of musculoskeletal complaints between musicians and non-musicians is scarce. The aim of this study was to compare the prevalence of musculoskeletal complaints between musicians and non-musicians. METHODS: A cross-sectional study in 3215 students from three music academies (n = 345) and one medical school (n = 2870) in The Netherlands was performed, using an electronic questionnaire. The questionnaire included socio-demographic characteristics, use of music instruments and the occurrence of musculoskeletal complaints in six body regions. Questions were related to musculoskeletal complaints over the last twelve months and at the time of the questionnaire. Chi-square, t-tests and Kruskal-Wallis tests were used for comparison between the two groups. The association between musculoskeletal complaints and possible predictors was analyzed using a logistic and Poisson regression. RESULTS: Eighty-seven music academy students and 503 medical students returned the questionnaire, of which respectively eighty-three and 494 were included in the study. Seventy-four music academy students (89.2%) reported one or more musculoskeletal complaints during the last twelve months, compared to 384 (77.9%) medical students (p = 0.019). Moreover 52 music academy students (62.7%) and 211 medical students (42.7%) reported current musculoskeletal complaints (p = 0.001). The odds ratio (OR) for the development of musculoskeletal complaints during the last twelve months in music academy students versus medical students is 2.33 (95% CI 1.61-3.05, p = 0.022). The OR at the time of the questionnaire is 2.25 (95% CI 1.77-2.73, p = 0.001). The total number of complaints have been modeled by employing a Poisson regression; the results show that non-musicians have on average less complaints than musicians (p = 0.01). The adjusted means are 2.90 (95% CI 2.18-3.63) and 1.83 (95% CI 1.63-2.04) respectively for musicians and non-musicians. Regarding the localization of complaints, music academy students reported more complaints concerning the right hand, wrists, left elbow, shoulders, neck, jaw and mouth in contrast to medical students. CONCLUSIONS: Musculoskeletal complaints are significantly more common among musicians compared to non-musicians, mainly due to a higher number of upper extremity complaints.

Exploring the effects of a combined exercise programme on pain and fatigue outcomes in people with systemic sclerosis: study protocol for a large European multi-centre randomised controlled trial.

BACKGROUND: Pain, related to Raynaud's phenomenon or digital ulceration, has been identified as very prevalent and debilitating symptoms of systemic sclerosis (SSc), both significantly affecting patients' quality of life (QoL). Pharmacological therapeutic strategies were found not to be sufficiently effective in the management of SSc-induced pain and fatigue, and evidence for exercise is scarce. As yet, the effects of a long-term, tailored exercise programme on pain and fatigue in patients with SSc have not been explored. In addition to pain and fatigue, this study aims to evaluate the effects of exercise on QoL, physical fitness, functional capacity, and vascular structure in people with SSc (PwSSc). METHODS: This will be a multicentre (n = 6) randomised controlled clinical trial to assess the effect of a previously established, supervised 12-week combined exercise programme on pain and fatigue as compared to no exercise in PwSSc. The study will recruit 180 patients with SSc that will be allocated randomly to two groups. Group A will perform the exercise programme parallel to standard usual care and group B will receive usual care alone. Patients in the exercise group will undertake two, 45-min sessions each week consisting of 30-min high-intensity interval training (HIIT) (30-s 100% peak power output/30-s passive recovery) on an arm crank ergometer and 15 min of upper body circuit resistance training. Patients will be assessed before as well as at 3 and 6 months following randomisation. Primary outcomes of the study will be pain and fatigue assessed via questionnaires. Secondary outcomes include quality of life, structure of digital microvasculature, body composition, physical fitness, and functional capacity. DISCUSSION: Data from this multi-centre research clinical trial will primarily be used to establish the effectiveness of a combined exercise protocol to improve pain and fatigue in SSc. In parallel, this study will be the first to explore the effects of long-term exercise on potential microvascular alterations assessed via NVC. Overall, this study will provide sufficient data to inform current clinical practice guidelines and may lead to an improvement of QoL for patients with SSc. TRIAL REGISTRATION: ClinicalTrials.gov NCT05234671. Registered on 14 January 2022.

Maintenance of physical activity after Internet-based physical activity interventions in patients with rheumatoid arthritis.

OBJECTIVES: To investigate the maintenance of physical activity 12 months after two 1-year Internet-based physical activity interventions in patients with RA. METHODS: This follow-up study was a randomized comparison of an Internet-based individualized training (IT) and a general training (GT) programme in sedentary RA patients. Outcome measures included physical activity (meeting public health recommendations for moderate physical activity, i.e. 30 min for at least 5 days/week; or vigorous physical activity, i.e. 20 min for at least 3 days/week), functional ability and quality of life (QoL). RESULTS: Of the 152 RA patients who completed the initial study, 110 (72%) were available at follow-up. At 24 months, the proportions of patients meeting public health recommendations for moderate intensity physical activity were significantly higher compared with baseline in both the IT and GT groups (19 and 24%, respectively, P < 0.05), whereas the proportions of patients meeting the recommendation for vigorous activity was only significantly higher compared with baseline in the IT group (P < 0.05) but not in the GT group. There were no differences between the IT and GT groups concerning proportions of patients meeting moderate or vigorous physical activity recommendations at 24 months. Apart from a significantly higher RAQoL score in the IT group at 24 months compared with baseline, there were no significant differences within or between the programmes regarding functional ability or QoL. CONCLUSION: In RA patients, the effectiveness of both an individualized and a general 1-year Internet-based physical activity programme is sustained with respect to moderate intensity physical activity up to 12 months after the interventions.

Vocational rehabilitation programs for individuals with chronic arthritis.

PURPOSE OF REVIEW: To summarize recent literature on vocational rehabilitation interventions in patients with chronic arthritis. RECENT FINDINGS: The current literature shows that the prevalence of work disability, including work cessation, sick leave, and any other restriction in the work status among patients with chronic arthritis, is substantial. In some studies, a trend towards a decline in work disability in chronic arthritis is seen, possibly reflecting improvements in medical treatment. The proof of effectiveness of comprehensive vocational rehabilitation interventions aimed at individuals in various stages of work disability is scanty. With prolonged sick leave being a major determinant of job loss, interventions are nowadays developed that specifically address patients with chronic arthritis at a stage in which sick leave occurs, with promising results. Economic evidence is limited, but savings on productivity are likely to outweigh the costs of an effective intervention. SUMMARY: Despite advances in medical treatment, work disability among individuals with chronic arthritis is substantial. Although the (cost-)effectiveness of interventions in patients with established work disability is unclear, the results of studies on interventions employed in the early stages of threatened work ability point to a favorable effect.

The Bt-DUX: development of a subjective measure of health-related quality of life in patients who underwent surgery for lower extremity malignant bone tumor.

BACKGROUND: To examine the practical applicability, internal consistency, and validity of the Bt-DUX, a disease-specific Health Related Quality of Life (HRQoL) instrument. The Bt-Dux was developed to examine patients' individual values of their life after a malignant bone tumor of the lower extremity at four domains (cosmetic, social, emotional, and functional). PROCEDURE: Patients were eligible for this cross-sectional, multicenter study if they underwent surgery for a malignant tumor of the leg in a period ranging between 12 and 60 months before the recruitment. Assessments included: Bt-DUX, Toronto Extremity Salvage Score (TESS) Short Form (SF)-36, TNO-AZL Questionnaire for Adult's Quality of Life (TAAQOL), and TNO-AZL Children's Quality of Life Questionnaire (TACQOL). RESULTS: Seventy-two patients (35 male, 37 female), mean age 17 (SD 4) years were included. Limb sparing surgery took place in 32 patients and ablative surgery in 40 patients. The Bt-DUX was completed in less than 5 min and easy to comprehend. The mean Bt-DUX score was 69.8 (SD 15.5), with Cronbach's alpha being 0.92. Domain-total correlations ranged between 0.84 and 0.88 (P < 0.01). Correlations between Bt-DUX Total score and TESS, SF-36 Physical and Mental Component Summary scales and selected TACQOL and TAAQOL scores were statistically significant (P < 0.05), except for the social scale of the TACQOL. The Bt-DUX was able to discriminate between patients with higher and lower TESS scores (P < 0.05). CONCLUSION: The Bt-DUX was found to be a practical and valid instrument. Its added value compared with existing HRQoL measures needs to be further established.

Needs and preferences regarding health care delivery as perceived by patients with systemic sclerosis.

This study aims to examine the needs and preferences regarding the delivery of health care services and information provision and their determinants in patients with systemic sclerosis (SSc). A questionnaire was sent to 77 SSc outpatients, comprising 27 items on health care needs within the domains physical, psychological, social support, employment/daily activities, or other health problems and 13 items on information needs. Moreover, the patients' preferences regarding the provision of health care services and information were listed. Additional assessments included sociodemographic characteristics, physical functioning (SSc Health Assessment Questionnaire), and quality of life (SF-36). Sixty-four patients (83%) returned the questionnaire. Twenty-six patients (41%) reported one or more unmet health care needs, with the highest proportions of patients with unmet needs seen in the physical (28%) and psychological (20%) domain. The highest percentages of patients with information needs were observed for medical subjects (20-28%). A lower mental component summary scale score and younger age were associated with the presence of at least one health care need in the psychological domain. Worse physical functioning, a diagnosis of diffuse SSc and having a partner were associated with higher information need score. A yearly, standardized multidisciplinary assessment program was most frequently mentioned as a preferred, but not yet existing health care model (59%) and the rheumatologist as a preferred source of information supply (75%). Unmet health care and information needs are common among SSc patients. To improve SSc health care, more attention should be paid to health care services for specific physical and psychological problems and medical information supply by the rheumatologist. In addition, the development of new models of care, such as a yearly, standardized multidisciplinary diagnostic program seems warranted.