Gigtforeningen

OBJECTIVE: To amplify the voices of people living with atraumatic shoulder pain, their relatives, and health care practitioners, and to establish research questions. DESIGN: A priority-setting study using a modified approach originally formulated by the James Lind Alliance (JLA). METHODS: The process consisted of 6 phases (initiation, consultation, collation, prioritization, validation, and reporting), and included 2 e-surveys and 2 separate virtual workshops. We included people with atraumatic shoulder pain, relatives, health care practitioners managing shoulder pain, and researchers conducting research within the field. RESULTS: Six hundred and eight people participated (n = 383 [63%] patients, n = 213 [35%] health care practitioners, and n = 12 [2%] carers). In the first survey, 297 participants submitted 1080 potential research questions, which were collated into 16 main themes and 94 subthemes and transformed into research questions. These research questions were featured in the second survey, where 290 participants prioritized the questions, resulting in a compilation of the top 25 questions. Based on discussions from 2 separate online workshops with a total of 21 participants, a top-10 list was created. CONCLUSION: In the final priority list, the 3 research questions with the highest ranking were, first, "how can we improve the translation of research into clinical practice?"; second, "how can we prevent atraumatic shoulder pain?"; and third, "who benefits from surgery, and who does not?" J Orthop Sports Phys Ther 2025;55(3):1-12. Epub 12 February 2025. doi:10.2519/jospt.2025.13059.

BackgroundThere is a lack of knowledge about the nature and frequency of the main limitations in activities and participation experienced by a subgroup of people with rheumatoid arthritis (RA) and severe limitations in physical functioning. More insight is essential to optimize treatment for this subgroup and can be obtained by linking the treatment goals perceived by the patient to the International Classification of Functioning, Disability and Health (ICF) as a frame of reference. Goal setting is widely recognized for tailoring and optimizing treatment, and for this purpose the Patient Specific Complaint (PSC) instrument is recommended in physiotherapy practices in the Netherlands [1]ObjectivesTo describe the nature and frequency of limitations in activities and participation of people with RA and severe limitations. Limitations will be derived from the PSC [1] and linked to the ICF and the comprehensive and brief ICF Core Sets for RA.MethodsBaseline data from a randomized controlled trial on the effect of long-term exercise therapy in people with RA and severe limitations in functioning were used. For each participant, the three most limited activities were identified and prioritized using the PSC. Two researchers independently identified meaningful concepts within each PSC activity and linked them to the most specific ICF category within the “Activities and Participation” component, following standardized ICF linking rules [2]. In case of disagreement, this was discussed with a third researcher until consensus was reached. The frequencies of ICF categories were calculated overall and for PCS activities ranked 1, 2 and 3. Finally, the uniquely identified ICF categories were compared to the content of the comprehensive and brief RA ICF core sets for the component “Activities and Participation”.ResultsFrom 206 RA patients (90.8% female, 58.7 (12.9) years of age, 1.5 (0.5) HAQ-DI score), 618 PSC activities were recorded, including 911 meaningful concepts. These concepts were subsequently linked to 909 ICF categories, with 72 unique ICF codes. Overall, the most prevalent ICF categories were: 1) d4501 walking long distances (n=121; 59%); 2) d4502 walking on different surfaces (n=79; 38%); 3), d451 stairclimbing (n=62; 30%) 4) d4103 changing body position from sitting (n=60; 29%) and 5) d4401 grasping (n=51, 25%). The categories for the ranked PSC activities differed slightly, and manipulating, d4502, often proved limited too (see Table 1). The uniquely identified ICF codes covered 21 of 32 items (66%) of the comprehensive and 4 of 6 items (67%) of the brief ICF core set for RA patients. Performing daily routine, d230 and rewarding work, d850, were limitations included in both core sets that were not identified in this subpopulation. However, stair climbing limitations were prevalent in this population, but are not part of the RA core sets.ConclusionThe most prevalent limited activities involved walking (long distances, on different surfaces and climbing stairs), changing body position from sitting and hand use (grasping and manipulating). To optimize treatment for this specific subgroup, clinicians should be aware that not all RA core set items are prevalent in practice and that some frequent problems are not included in the core sets.

standard of care all over the world.Why is this so?In the 21st century we should have higher ambitions than merely keeping patients alive.

Evidence and gap maps (EGMs) can be used to identify gaps within specific research areas and help guide future research agendas and directions. Currently, there are no EGMs within the broad domain of chronic musculoskeletal (MSK) pain in adults. The aim of this study was to create a contemporary EGM of interventions and outcomes used for research investigating chronic MSK pain. This EGM was based on systematic reviews of interventions published in scientific journals within the past 20 years. Embase, PubMed, the Cochrane Library, and PsycINFO were used to retrieve studies for inclusion. The quality of the included reviews was assessed using AMSTAR-II. Interventions were categorised as either physical, psychological, pharmacological, education/advice, interdisciplinary, or others. Outcomes were categorised using the Initiative on Methods, Measurement, and Pain Assessment in Clinical Trials (IMMPACT) recommendations. Of 4299 systematic reviews, 457 were included. Of these, 50% were rated critically low quality, 25% low quality, 10% moderate quality, and 15% rated high quality. Physical interventions (eg, exercise therapy) and education were the most common interventions reported in 80% and 20% of the studies, respectively. Pain (97%) and physical functioning (87%) were the most reported outcomes in the systematic reviews. Few systematic reviews used interdisciplinary interventions (3%) and economic-related outcomes (2%). This contemporary EGM revealed a low proportion of high-quality evidence within chronic MSK pain. This EGM clearly outlines the lack of high-quality research and the need for increased focus on interventions encompassing the entire biopsychosocial perspective.

AimsIn May 2020, a nationwide, web-based system for remote entry of patient-reported outcomes (PROs) in inflammatory rheumatic diseases was launched and implemented in routine care (DANBIO-from-home). After 1.5 years of use, we explored clinical characteristics of patients who did versus did not use the system, and the time to first entry of PROs.MethodsAll patients followed in DANBIO were informed about DANBIO-from-home by electronic invitations or when attending their clinic. Characteristics of patients who did/did not use DANBIO-from-home in the period after implementation were explored by multivariable logistic regression analyses including demographic and clinical variables (gender, age group, diagnosis, disease duration, use of biological disease-modifying agent (bDMARD), Health Assessment Questionnaire (HAQ), Patient Acceptable Symptom Scale (PASS)). Time from launch to first entry was presented as cumulative incidence curves by age group (<40/40–60/61–80/>80 years).ResultsOf 33 776 patients, 68% entered PROs using DANBIO-from-home at least once. Median (IQR) time to first entry was 27 (11–152) days. Factors associated with data entry in multivariate analyses (OR (95% CI)) were: female gender (1.19 (1.12 to 1.27)), bDMARD treatment (1.41 (1.33 to 1.50)), age 40–60 years (1.79 (1.63 to 1.97)), 61–80 years (1.87 (1.70 to 2.07), or age >80 years (0.57 (0.50 to 0.65)) (reference: age <40 years), lower HAQ (0.68 (0.65 to 0.71)) and PASS ‘no’ (1.09 (1.02 to 1.17). Diagnosis was not associated. Time to first entry of PROs was longest in patients <40 years of age (119 (24–184) days) and shortest in the 61–80 years age group (25 (8–139) days).ConclusionA nationwide online platform for PRO in rheumatology achieved widespread use. Higher age, male gender, conventional treatment and disability were associated with no use.

BackgroundThe Danish Rheumatism Association wanted to improve its communication with and between its volunteers. We had an existing system that worked like a database of information, but our volunteers found it difficult and lacking the needed information. Furthermore, they wanted to be in closer contact with other volunteers with similar functions in the organization to be able to share ideas and learn from each other.ObjectivesWe wanted to find a platform with which we could increase the connectability between our volunteers across the organization as well as making existing information more accessible for them. We also wanted an easier way of contact to our volunteers that did not require them to use their e-mails.MethodsFirst we identified the tasks we wanted our “solution” to solve. Then we decided that the ideal tool for this probably would be an App that supported the connectability as well as a “database” with documents and instructions in which we could present important and useful information to our volunteers.We searched the marked for platforms and invited three companies to make a presentation on how their product could support our ideas and wishes.After the presentation, we settled on the solution with the best connectability functions, as we wanted to present our volunteers with a completely new experience of contact with the organization and each other.We introduced the App on a big conference for our volunteers we have every two years. We had a big workshop planned with instruction and tests, where our volunteers could try the App and its functions. Prior to the conference, we had sent out instructions to all the participants on how to install the app, and registered them as users of the app, making sure all was in place and ready for the conference and our introduction.ResultsWe found, that instructing such a large group of people all at once proved to be more demanding than we had expected. After the conference, we continued with the introduction of the app to new volunteers as well as sending information and updated instructions to existing app- users.We have found that the introduction of this new app has been quite a success. We now have a platform for easy and fast communication to and between all our volunteers, as well as access to relevant news and important information from the organization about their roles and tasks as volunteers.It has been quite a time-consuming task to implement the app and we have invested a great deal of working hours making sure the app would be used by our volunteers. We have found it necessary to develop a separate communication plan to ensure our volunteers accept and remember the app as an important working tool.ConclusionWe found, that instructing such a large group of people all at once proved to be more demanding than we had expected. After the conference, we continued with the introduction of the app to new volunteers as well as sending information and updated instructions to existing app- users.We have found that the introduction of this new app has been quite a success. We now have a platform for easy and fast communication to and between all our volunteers, as well as access to relevant news and important information from the organization about their roles and tasks as volunteers.It has been quite a time-consuming task to implement the app and we have invested a great deal of working hours making sure the app would be used by our volunteers. We have found it necessary to develop a separate communication plan to ensure our volunteers accept and remember the app as an important working tool.Disclosure of InterestsNone declared

Headache and facial pain are among the most common, disabling and costly diseases in Europe, which demands for high quality health care on all levels within the health system. The role of the Danish Headache Society is to educate and advocate for the needs of patients with headache and facial pain. Therefore, the Danish Headache Society has launched a third version of the guideline for the diagnosis, organization and treatment of the most common types of headaches and facial pain in Denmark. The second edition was published in Danish in 2010 and has been a great success, but as new knowledge and treatments have emerged it was timely to revise the guideline. The recommendations for the primary headaches and facial pain are largely in accordance with the European guidelines produced by the European Academy of Neurology. The guideline should be used a practical tool for use in daily clinical practice for primary care physicians, neurologists with a common interest in headache, as well as other health-care professionals treating headache patients. The guideline first describes how to examine and diagnose the headache patient and how headache treatment is organized in Denmark. This description is followed by sections on the characteristics, diagnosis and treatment of each of the most common primary and secondary headache disorders and trigeminal neuralgia. The guideline includes many tables to facilitate a quick overview. Finally, the particular challenges regarding migraine and female hormones as well as headache in children are addressed.