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1.
Arch Dis Child ; 109(3): 240-246, 2024 02 19.
Article in English | MEDLINE | ID: mdl-38212079

ABSTRACT

OBJECTIVE: The objective of this study was to analyse the narrative life stories of children with end-stage kidney disease (ESKD) and their families to determine how health professionals can effectively support these children to achieve better life outcomes. DESIGN: Qualitative narrative biographic study. SETTING: We invited every long-term survivor of paediatric kidney transplants and their families at the Medical University of Vienna between 2008 and 2013 to participate in this study. PARTICIPANTS: Nineteen patients (women: n=8, 42%) and 34 family members (women: n=22, 65%) were interviewed. The patients had a mean age of 7.6 (SD±5.6) years at the time of transplantation and 22.2 (SD±5.4) at the time of interview. MAIN OUTCOMES MEASURES: A qualitative narrative biographical analysis was combined with computational structured topic models using the Latent Dirichlet Allocation. RESULTS: The overarching finding was the desire for normality in daily life in long-term survivors and their families but with different perceptions of what normality looks like and predominance of this aspect evolving. Different strategies were used by patients (focused on their advancement) and caregivers (normality for all family members). Siblings played a major role in supporting survivors' social inclusion. CONCLUSIONS: The strong desire for normality confirms recent findings of the Standardised Outcomes in Nephrology Group initiative, which proposes survival and life participation as core outcomes in children with chronic kidney disease. Our study should be a starting point for an international effort to identify typologies and stratified interventions for children with ESKD and their families, particularly siblings.


Subject(s)
Kidney Failure, Chronic , Kidney Transplantation , Child , Humans , Female , Family , Qualitative Research , Caregivers , Kidney Failure, Chronic/surgery , Survivors
2.
RMD Open ; 9(2)2023 05.
Article in English | MEDLINE | ID: mdl-37230762

ABSTRACT

BACKGROUND: Ongoing education of health professionals in rheumatology (HPR) is critical for high-quality care. An essential factor is education readiness and a high quality of educational offerings. We explored which factors contributed to education readiness and investigated currently offered postgraduate education, including the European Alliance of Associations for Rheumatology (EULAR) offerings. METHODS AND PARTICIPANTS: We developed an online questionnaire, translated it into 24 languages and distributed it in 30 European countries. We used natural language processing and the Latent Dirichlet Allocation to analyse the qualitative experiences of the participants as well as descriptive statistics and multiple logistic regression to determine factors influencing postgraduate educational readiness. Reporting followed the Checklist for Reporting Results of Internet E-Surveys guideline. RESULTS: The questionnaire was accessed 3589 times, and 667 complete responses from 34 European countries were recorded. The highest educational needs were 'professional development', 'prevention and lifestyle intervention'. Older age, more working experience in rheumatology and higher education levels were positively associated with higher postgraduate educational readiness. While more than half of the HPR were familiar with EULAR as an association and the respondents reported an increased interest in the content of the educational offerings, the courses and the annual congress were poorly attended due to a lack of awareness, comparatively high costs and language barriers. CONCLUSIONS: To promote the uptake of EULAR educational offerings, attention is needed to increase awareness among national organisations, offer accessible participation costs, and address language barriers.


Subject(s)
Health Personnel , Rheumatology , Health Personnel/education , Rheumatology/education , Education, Continuing , Europe , Surveys and Questionnaires , Humans , Male , Female , Curriculum , Pediatrics/education , Education, Distance
3.
Nat Med ; 29(5): 1164-1171, 2023 05.
Article in English | MEDLINE | ID: mdl-36973410

ABSTRACT

There is growing concern that Coronavirus Disease 2019 (COVID-19) vaccine fatigue will be a major obstacle in maintaining immunity in the general population. In this study, we assessed vaccine acceptance in future scenarios in two conjoint experiments, investigating determinants such as new vaccines, communication, costs/incentives and legal rules. The experiments were embedded in an online survey (n = 6,357 participants) conducted in two European countries (Austria and Italy). Our results suggest that vaccination campaigns should be tailored to subgroups based on their vaccination status. Among the unvaccinated, campaign messages conveying community spirit had a positive effect (0.343, confidence interval (CI) 0.019-0.666), whereas offering positive incentives, such as a cash reward (0.722, CI 0.429-1.014) or voucher (0.670, CI 0.373-0.967), was pivotal to the decision-making of those vaccinated once or twice. Among the triple vaccinated, vaccination readiness increased when adapted vaccines were offered (0.279, CI 0.182-0.377), but costs (-0.795, CI -0.935 to -0.654) and medical dissensus (-0.161, CI -0.293 to -0.030) reduced their likelihood to get vaccinated. We conclude that failing to mobilize the triple vaccinated is likely to result in booster vaccination rates falling short of expectations. For long-term success, measures fostering institutional trust should be considered. These results provide guidance to those responsible for future COVID-19 vaccination campaigns.


Subject(s)
COVID-19 Vaccines , COVID-19 , Humans , COVID-19 Vaccines/therapeutic use , COVID-19/epidemiology , COVID-19/prevention & control , Communication , Europe/epidemiology , Fatigue , Vaccination
5.
Lung Cancer ; 173: 5-13, 2022 11.
Article in English | MEDLINE | ID: mdl-36103777

ABSTRACT

BACKGROUND: In 2016, the International Consortium for Health Outcomes Measurement (ICHOM) defined an international consensus recommendation of the most important outcomes for lung cancer patients. The European Health Outcomes Observatory (H2O) initiative aimed to develop an updated patient-centered core outcome set (COS) for lung cancer, to capture the patient perspective of the impact of lung cancer and (novel) treatments using a combination of patient-reported outcome (PRO) instruments and clinical data as a means to drive value-based health-care. MATERIAL AND METHODS: An international, expert team of patient representatives, multidisciplinary healthcare professionals, academic researchers and pharmaceutical industry representatives (n = 17) reviewed potential outcomes generated through literature review. A broader group of patients/patient representatives (n = 31), healthcare professionals / academic researchers (n = 83), pharmaceutical industry representatives (n = 26), and health authority representatives (n = 6) participated in a Delphi study. In two survey rounds, participants scored the relevance of outcomes from a preliminary list. The threshold for consensus was defined as ≥ 70 % of participants scoring an outcome as 'highly relevant'. In concluding consensus-meeting rounds, the expert multidisciplinary team finalized the COS. RESULTS: The preliminary list defined by the core group consisted of 102 outcomes and was prioritized in the Delphi procedure to 64. The final lung cancer COS includes: 1) case-mix factors (n = 27); 2) PROs related to health-related quality of life (HRQoL) (n = 25); 3) clinical outcomes (n = 12). Patient-reported symptoms beyond domains included in the ICHOM lung cancer set in 2016 were insomnia, nausea, vomiting, anxiety, depression, lack of appetite, gastric problems, constipation, diarrhoea, dysphagia, and haemoptysis. CONCLUSIONS: We will implement the lung cancer COS in Europe within the H2O initiative by collecting the outcomes through a combination of clinician-reported measures and PRO measures. The COS will support the adoption and reporting of lung cancer measures in a standardized way across Europe and empower patients with lung cancer to better manage their health care.


Subject(s)
Lung Neoplasms , Quality of Life , Humans , Delphi Technique , Lung Neoplasms/epidemiology , Lung Neoplasms/therapy , Consensus , Patient-Centered Care , Treatment Outcome , Research Design
7.
JMIR Form Res ; 6(6): e35754, 2022 Jun 21.
Article in English | MEDLINE | ID: mdl-35617671

ABSTRACT

BACKGROUND: On January 30, 2020, the World Health Organization Emergency Committee declared the rapid worldwide spread of COVID-19 a global health emergency. By December 2020, the safety and efficacy of the first COVID-19 vaccines had been demonstrated. However, international vaccination coverage rates have remained below expectations (in Europe at the time of manuscript submission). Controversial mandatory vaccination is currently being discussed and has already been introduced in some countries (Austria, Greece, and Italy). We used the Twitter survey system as a viable method to quickly and comprehensively gather international public health insights on mandatory vaccination against COVID-19. OBJECTIVE: The purpose of this study was to better understand the public's perception of mandatory COVID-19 vaccination in real time using Twitter polls. METHODS: Two Twitter polls were developed (in the English language) to seek the public's opinion on the possibility of mandatory vaccination. The polls were pinned to the Digital Health and Patient Safety Platform's (based in Vienna, Austria) Twitter timeline for 1 week in mid-November 2021, 3 days after the official public announcement of mandatory COVID-19 vaccination in Austria. Twitter users were asked to participate and retweet the polls to reach the largest possible audience. RESULTS: Our Twitter polls revealed two extremes on the topic of mandatory vaccination against COVID-19. Almost half of the 2545 respondents (n=1246, 49%) favor mandatory vaccination, at least in certain areas. This attitude contrasts with the 45.7% (n=1162) who categorically reject mandatory vaccination. Over one-quarter (n=621, 26.3%) of participating Twitter users said they would never get vaccinated, as reflected by the current Western European and North American vaccination coverage rate. Concatenating interpretation of these two polls should be done cautiously as participating populations might substantially differ. CONCLUSIONS: Mandatory vaccination against COVID-19 (in at least certain areas) is favored by less than 50%, whereas it is opposed by almost half of the surveyed Twitter users. Since (social) media strongly influences public perceptions and views, and social media discussions and surveys are specifically susceptible to the "echo chamber effect," the results should be interpreted as a momentary snapshot. Therefore, the results of this study need to be complemented by long-term surveys to maintain their validity.

8.
Lancet Reg Health Eur ; 17: 100389, 2022 Jun.
Article in English | MEDLINE | ID: mdl-35475036

ABSTRACT

Background: To date, Austria is among the countries with the lowest coronavirus vaccination rates in Western Europe. It has announced the introduction of a general vaccine mandate but is experiencing an increasing societal polarization over this issue. We, therefore, aimed to provide evidence on the underlying motivations of vaccine hesitancy and evaluate what kinds of interventions - information, incentives, and rules - might increase vaccination readiness. Method: We conducted a cross-sectional survey with a sample of 1,543 unvaccinated Austrian residents in October 2021, including two embedded conjoint experiments. Findings: We screened 8,190 individuals to recruit the sample matching the Austrian micro-census. In experiment 1, easing rather than tightening of societal restrictions, a fixed monetary reward compared to a lottery and physicians' recommendations were associated with significantly higher intentions to get vaccinated. In experiment 2, standard approval by European or national authorities and simple information had a significant positive effect on vaccination propensity. Among the unvaccinated, fear of side effects, beliefs that comorbidities or the desire to have children would not allow vaccination, the assumption that the own immune system would provide sufficient protection, conspirational thinking (e.g., the refusal to participate in a 'large genetic experiment'), low trust in societal institutions, and spiritual beliefs were very common. Interpretation: While many unvaccinated showed a low propensity to become vaccinated, we identified a cluster of 195 (23% of the participants without missing values) that could potentially be reached by information and incentives, including people with heightened comorbidity rates or a desire for children. Funding: Vienna Science and Technology Fund.

9.
J Multidiscip Healthc ; 15: 247-258, 2022.
Article in English | MEDLINE | ID: mdl-35173439

ABSTRACT

OBJECTIVE: Several comments and recommendations called to embed better the patients' and public voice in healthcare policymaking. Still, no studies captured patients' bottom-up perspectives regarding healthcare at the time of COVID-19 at a micro-level in a range of different countries. We, therefore, explored the perspectives of patient representatives in all six World Health Organisation (WHO) regions and extracted suggestions for care redesign after the pandemic. METHODS: We conducted semi-structured interviews with patient representatives until saturation. Thematic analysis followed a modified form of meaning condensation. We established rigour by transcript checking, inter-coder agreement, quote variation and standardised reporting. RESULTS: Disadvantaged people experienced an unprecedented inequity in healthcare from limited access to physical violence. The narratives revealed the extent of this inequity, but also opportunities for health workers to act and improve. Stigmatisation from COVID-19 differed between cultures and countries and ranged from none to feeling "ashamed" and "totally bashed". While experienced as indispensable in the future, patients refused telehealth when they were given "bad news", such as having an eye removed because of melanoma, and in end-of-life care. Patient representatives redefined their role and became indispensable influencers throughout the pandemic and beyond. CONCLUSION: We reached out to patient representatives with diverse perspectives, including those who represent minorities and marginalised patient populations. Since preferences and personal meanings drive behaviour and could be foundations for targeted interventions, they must be considered in all groups of people to increase society's resilience as a whole. Future healthcare should tackle inequity, address stigmatisation and consider patients' narratives to optimize telemedicine.

10.
Article in English | MEDLINE | ID: mdl-35179240

ABSTRACT

BACKGROUND: Older age is a substantial risk factor for serious illness from COVID-19. Moreover, isolation and quarantine are more likely to cause physical, mental and social deprivation in older age. Information and Communication Tools are means to prevent such consequences. OBJECTIVE: This study aimed therefore to investigate the impact of the COVID-19 lockdown measures on the usage of an innovative technical support system deployed in Austria (AT) and Luxembourg (LU) consisting of several tools that allow independent living in older age. METHODS: Thirty-nine older adults (11 male; 28 female) with a mean age of 74.3 (SD 7.3) years were included in the study. In total, 18 older people were recruited in AT and 21 in LU. Descriptive statistics were computed, and longitudinal models were fitted for technology use and self-reported mood. RESULTS: The number of older adults using the system significantly decreased from the time before lockdown (39 [100%]) to during lockdown (26 [67%]) and thereafter (23 [59%]; p < 0.001). Multiple comparisons revealed a significant reduction in the average number of events for calendar and medication tools, but a substantial increase in communication and messaging events. Self-reported well-being declined during the lockdown and increased afterwards back to baseline levels. CONCLUSION: Communication was the main reason for using the support system. In addition, strategies and interventions are essential to support older adults when using information technology in the prolonged phases of the pandemic to sustain independent living. CLINICAL TRIAL REGISTRATION: The DAPAS protocol was published at www.researchgate.net. DOI: 10.13140/RG.2.2.24233.34401.


Subject(s)
COVID-19 , Aged , Communicable Disease Control , Female , Humans , Male , Pandemics , Quarantine , SARS-CoV-2
11.
J Evid Based Dent Pract ; 22(1S): 101661, 2022 Jan.
Article in English | MEDLINE | ID: mdl-35063177

ABSTRACT

OBJECTIVES: The most important dental patient-reported outcome (dPRO) is oral health-related quality of life (OHRQoL) which was commonly based on the following four dimensions: Oral Function, Orofacial Pain, Orofacial Appearance, and Psychosocial Impact. However, until now, analyses linking dPROSs to the four dimensions have only been done in adults. We therefore examined if the existing dental patient-reported outcome measures (dPROMS) for pediatric patients could also be mapped to these four domains. METHODS: We performed a literature search to identify generic dPROMs administered in children and adolescents. Two researchers independently assessed titles, abstracts and full texts and extracted pediatric dPROMs and items. dPROM items were then mapped to the four OHRQoL dimensions. RESULTS: We identified 701 articles. After abstract screening, 118 articles were reviewed in full text. Fifteen articles met the inclusion criteria. Twelve instruments were identified, including 6 modified versions of the questionnaires. All questionnaires and their included items could be mapped to the four dimensions. In some cases, items were linked to two dimensions. CONCLUSIONS: The four OHRQoL dimensions (Oral Function, Orofacial Pain, Orofacial Appearance, and Psychosocial Impact) are also applicable for existing dPROMs in pediatric dental patients. These dimensions should therefore be considered when measuring OHRQoL in children and adolescents in future studies.


Subject(s)
Oral Health , Quality of Life , Adolescent , Adult , Child , Facial Pain , Humans , Patient Reported Outcome Measures , Surveys and Questionnaires
12.
Wien Klin Wochenschr ; 133(23-24): 1255-1264, 2021 Dec.
Article in English | MEDLINE | ID: mdl-34820699

ABSTRACT

BACKGROUND: There is a lack of knowledge on how people at increased risk of severe illness from Coronavirus disease 2019 (COVID-19) experienced the infection control measures. This study aimed to explore their perspectives and needs during the coronavirus outbreak. METHODS: A qualitative longitudinal interview study was conducted in Austria during lockdown due to COVID-19 containment and afterwards. People older than 65 years of age and/or affected by a chronic medical condition participated in individual telephone interviews at two time points. Thematic analysis was used to analyze the data and saturation was defined as no new emerging concepts in at least 10 subsequent interviews. RESULTS: Thematic saturation was reached when 33 individuals (75.8% female, mean age ± standard deviation [SD] 73.7±10.9 years) were included. A total of 44 lower level concepts were extracted and summarized into 6 higher level concepts. They included (i) a general positive attitude toward COVID-19 measures, (ii) challenges of being isolated from the community, (iii) deterioration of health status, (iv) difficulties with measures due to their health condition, (v) lack of physical contact and (vi) lack of information versus overload. Participants suggested environmental adaptations for strengthening resilience in people at increased risk of severe illness from COVID-19. CONCLUSION: Strategies and interventions are needed to support people at risk under pandemic conditions. Their perceptions and needs should be addressed to reduce the potential deterioration of health conditions and ensure well-being even during prolonged periods of crisis.


Subject(s)
COVID-19 , Female , Humans , Infection Control , Longitudinal Studies , Male , Pandemics , SARS-CoV-2
13.
Viruses ; 13(9)2021 09 03.
Article in English | MEDLINE | ID: mdl-34578343

ABSTRACT

While self-reported Coronavirus Disease 2019 (COVID-19) symptom checklists have been extensively used during the pandemic, they have not been sufficiently validated from a psychometric perspective. We, therefore, used advanced psychometric modelling to explore the construct validity and internal consistency of an online self-reported COVID-19 symptom checklist and suggested adaptations where necessary. Fit to the Rasch model was examined in a sample of 1638 Austrian citizens who completed the checklist on up to 20 days during a lockdown. The items' fatigue', 'headache' and 'sneezing' had the highest likelihood to be affirmed. The longitudinal application of the symptom checklist increased the fit to the Rasch model. The item 'cough' showed a significant misfit to the fundamental measurement model and an additional dependency to 'dry cough/no sputum production'. Several personal factors, such as gender, age group, educational status, COVID-19 test status, comorbidities, immunosuppressive medication, pregnancy and pollen allergy led to systematic differences in the patterns of how symptoms were affirmed. Raw scores' adjustments ranged from ±0.01 to ±0.25 on the metric scales (0 to 10). Except for some basic adaptations that increases the scale's construct validity and internal consistency, the present analysis supports the combination of items. More accurate item wordings co-created with laypersons would lead to a common understanding of what is meant by a specific symptom. Adjustments for personal factors and comorbidities would allow for better clinical interpretations of self-reported symptom data.


Subject(s)
COVID-19/epidemiology , COVID-19/psychology , Checklist , Psychometrics , SARS-CoV-2 , Adolescent , Adult , Aged , Aged, 80 and over , Austria/epidemiology , COVID-19/diagnosis , Child , Comorbidity , Female , Humans , Male , Middle Aged , Psychometrics/methods , Public Health Surveillance , Self Report , Surveys and Questionnaires , Symptom Assessment , Young Adult
14.
J Dent ; 114: 103819, 2021 11.
Article in English | MEDLINE | ID: mdl-34560224

ABSTRACT

OBJECTIVES: The 14-item Oral Health Impact Profile (OHIP-14) is the most frequently used instrument to measure oral health-related quality-of-life (OHRQoL) in adults. Despite its popularity, its psychometric properties have been predominantly investigated based on the classical test theory while the fundamental principles of measurement have not been fully assessed. Therefore, our aim was to investigate to what extent the OHIP-14 meets the fundamental requirments of measurements. METHODS: We used the Rasch model to explore person-item-targeting, unidimensionality, local independence of items, invariance (differential-item-functioning, DIF), and the order of thresholds between response-options in the German version OHIP-14. We used data from osteoarthritis patients because hand disabilities and joint pain might influence oral hygiene. Furthermore, osteoarthritis in the temporomandibular-joint directly affects oral functioning. RESULTS: Five-hundred sixteen patients were included (mean age 66.5 years [±10.2; ranging from 34 to 89]; 71.3% [368] females). The OHIP-14 median total score was 0 (interquartile-range from 0 to 4), indicating a right-skewed distribution because many patients reported good OHRQoL. The instrument was found unidimensional. However, there was strong evidence of local dependency, disordered thresholds between response-options, and age-related DIF for item 5. A revised scoring scheme with three instead of five answer-options in all items and eliminating two items resolving local dependency, the newly adapted OHIP-12, showed better reliability and item-fit to the Rasch model than the original OHIP-14. CONCLUSIONS: This study assesses, for the first time, the OHIP-14 in terms of fundamental principles of measurement and proposes an item-reduced OHIP-12 as a psychometrically more accurate version of the instrument. CLINICAL SIGNIFICANCE: The Rasch model is essential to ensure instruments' precision and clinical meaningfulness when measuring OHRQoL in clinical practice and research. The OHIP-12, derived from the OHIP-14 by deleting two items due to local dependency, with a revised scoring scheme for all items distinguishing three answer-options instead of five, represents a psychometrically improved version of the instrument.


Subject(s)
Oral Health , Quality of Life , Adult , Aged , Female , Humans , Psychometrics , Reproducibility of Results , Surveys and Questionnaires
15.
RMD Open ; 7(2)2021 07.
Article in English | MEDLINE | ID: mdl-34326205

ABSTRACT

OBJECTIVE: Non-pharmacological interventions support patients with connective tissue diseases to better cope with and self-manage their diseases. This study aimed to map existing evidence on non-pharmacological interventions in patients with systemic lupus erythematosus (SLE), systemic sclerosis (SSc) and mixed connective tissue diseases regarding content, feasibility and potential suitability in an e-health setting. METHODS: A literature search was performed in eight different databases in July 2020. The intervention's content was extracted using the 'Better reporting of interventions: template for intervention description and replication (TIDieR) checklist and guide'. A Sankey diagram and descriptive statistics were used to analyse the data and illustrate the relationships between the interventions. RESULTS: Of 8198 identified records, 119 papers were eligible. One hundred and four of them (87.4%) were conducted between 2000 and 2020, mainly in the USA (SLE n=24 (21.2%), SSc n=16 (14.2%)), Brazil (SLE n=8 (7.1%), SSc n=5 (4.4%)) and Italy (SLE n=0 (0%), SSc n=12 (10.6%)). Fifty-two studies (SLE n=24 (21.2%), SSc n=28 (24.8%)) used multicomponent interventions. The single interventions were physical exercises (SLE n=16 (14.2%), SSc n=17 (15.0%)), coaching/counselling (SLE n=11 (18.0%), SSc n=0 (0%)) and education (SLE n=2 (1.8%), SSc n=3 (2.7%)). Primary outcomes focused on physical function (SLE n=1 (0.9%), SSc n=15 (13.3%)), mouth opening in SSc (n=4 (5.9%)) and physical capacity (SLE n=2 (1.8%), SSc n=1 (0.9%)). No interventions for mixed connective tissue disease were found. CONCLUSION: There was a great variety in the intervention's content due to differences in body structure, activity limitations and participation restrictions in SLE and SSc. These results highlight the need for personalised, multicomponent, non-pharmacological interventions, which could be delivered as e-health interventions.


Subject(s)
Connective Tissue Diseases , Lupus Erythematosus, Systemic , Scleroderma, Systemic , Telemedicine , Connective Tissue Diseases/therapy , Humans , Lupus Erythematosus, Systemic/therapy , Scleroderma, Systemic/therapy
16.
J Clin Epidemiol ; 135: 125-135, 2021 07.
Article in English | MEDLINE | ID: mdl-33691153

ABSTRACT

OBJECTIVES: The number of published clinical practice guidelines related to COVID-19 has rapidly increased. This study explored if basic methodological standards of guideline development have been met in the published clinical practice guidelines related to COVID-19. STUDY DESIGN AND SETTING: Rapid systematic review from February 1 until April 27, 2020 using MEDLINE [PubMed], CINAHL [Ebsco], Trip and manual search, including all types of healthcare workers providing any kind of healthcare to any patient population in any setting. RESULTS: There were 1342 titles screened and 188 guidelines included. The highest average AGREE II domain score was 89% for scope and purpose, the lowest for rigor of development (25%). Only eight guidelines (4%) were based on a systematic literature search and a structured consensus process by representative experts (classified as the highest methodological quality). The majority (156; 83%) was solely built on an informal expert consensus. A process for regular updates was described in 27 guidelines (14%). Patients were included in the development of only one guideline. CONCLUSION: Despite clear scope, most publications fell short of basic methodological standards of guideline development. Clinicians should use guidelines that include up-to-date information, were informed by stakeholder involvement, and employed rigorous methodologies.


Subject(s)
COVID-19/therapy , Practice Guidelines as Topic/standards , Humans , SARS-CoV-2
17.
RMD Open ; 7(1)2021 01.
Article in English | MEDLINE | ID: mdl-33514672

ABSTRACT

INTRODUCTION: Although patient-reported outcome measures (PROMs) are increasingly used in clinical practice and research, it is unclear whether these instruments cover the perspective of young people with inflammatory arthritis (IA). The aims of this study were to explore whether PROMs commonly used in IA adequately cover the perspective of young people from different European countries. METHODS: A multinational qualitative study was conducted in Austria, Croatia, Italy and the Netherlands. Young people with either rheumatoid arthritis (RA), juvenile idiopathic arthritis (JIA), Still's disease, psoriatic arthritis (PsA) or spondyloarthritis (SpA), aged 18-35 years, participated in semistructured focus group interviews. Thematic analysis was used and data saturation was defined as no new emergent concepts in at least three subsequent focus groups. RESULTS: Fifty-three patients (21 with RA/JIA/Still's, 17 with PsA, 15 with SpA; 72% women) participated in 12 focus groups. Participants expressed a general positive attitude towards PROMs and emphasised their importance in clinical practice. In addition, 48 lower level concepts were extracted and summarised into 6 higher level concepts describing potential issues for improvement. These included: need for lay-term information regarding the purpose of using PROMs; updates of certain outdated items and using digital technology for data acquisition. Some participants admitted their tendency to rate pain, fatigue or disease activity differently from what they actually felt for various reasons. CONCLUSIONS: Despite their general positive attitude, young people with IA suggested areas for PROM development to ensure that important concepts are included, making PROMs relevant over the entire course of a chronic disease.


Subject(s)
Arthritis, Juvenile , Arthritis, Psoriatic , Arthritis, Rheumatoid , Spondylarthritis , Adolescent , Arthritis, Juvenile/diagnosis , Arthritis, Juvenile/therapy , Arthritis, Psoriatic/diagnosis , Arthritis, Psoriatic/therapy , Female , Humans , Male , Patient Reported Outcome Measures
18.
Ann Rheum Dis ; 80(1): 57-64, 2021 01.
Article in English | MEDLINE | ID: mdl-32332077

ABSTRACT

OBJECTIVE: To establish European League Against Rheumatism (EULAR) points to consider for non-physician health professionals to prevent and manage fragility fractures in adults 50 years or older. METHODS: Points to consider were developed in accordance with EULAR standard operating procedures for EULAR-endorsed recommendations, led by an international multidisciplinary task force, including patient research partners and different health professionals from 10 European countries. Level of evidence and strength of recommendation were determined for each point to consider, and the mean level of agreement among the task force members was calculated. RESULTS: Two overarching principles and seven points to consider were formulated based on scientific evidence and the expert opinion of the task force. The two overarching principles focus on shared decisions between patients and non-physician health professionals and involvement of different non-physician health professionals in prevention and management of fragility fractures. Four points to consider relate to prevention: identification of patients at risk of fracture, fall risk evaluation, multicomponent interventions to prevent primary fracture and discouragement of smoking and overuse of alcohol. The remaining three focus on management of fragility fractures: exercise and nutritional interventions, the organisation and coordination of multidisciplinary services for post-fracture models of care and adherence to anti-osteoporosis medicines. The mean level of agreement among the task force for the overarching principles and the points to consider ranged between 8.4 and 9.6. CONCLUSION: These first EULAR points to consider for non-physician health professionals to prevent and manage fragility fractures in adults 50 years or older serve to guide healthcare practice and education.


Subject(s)
Accidental Falls/prevention & control , Bone Density Conservation Agents/therapeutic use , Dietary Supplements , Exercise , Health Personnel , Osteoporosis/therapy , Osteoporotic Fractures/prevention & control , Self-Help Devices , Advisory Committees , Aged , Aged, 80 and over , Europe , Humans , Medication Adherence , Middle Aged , Nurses , Nutritionists , Occupational Therapists , Osteoporosis/complications , Osteoporotic Fractures/etiology , Osteoporotic Fractures/therapy , Pharmacists , Physical Therapists , Primary Prevention , Rheumatology , Risk Assessment , Smoking Cessation
19.
Arthritis Care Res (Hoboken) ; 72(9): 1341-1342, 2020 09.
Article in English | MEDLINE | ID: mdl-32374910
20.
RMD Open ; 6(1)2020 01.
Article in English | MEDLINE | ID: mdl-32144136

ABSTRACT

OBJECTIVE: To perform a systematic literature review (SLR) about the effect of non-pharmacological interventions delivered by non-physician health professionals to prevent and manage osteoporotic fractures. METHODS: Eight clinical questions based on two criteria guided the SLR: (1) adults≥50 years at high risk of osteoporotic fracture and (2) interventions delivered by non-physician health professionals to prevent and manage osteoporotic fractures. Interventions focused on diagnostic procedures to identify risk of falling, therapeutic approaches and implementation strategies. Outcomes included fractures, falls, risk of falling and change in bone mineral density. Systematic reviews and randomised controlled trials were preferentially selected. Data were synthesised using a qualitative descriptive approach. RESULTS: Of 15 917 records, 43 articles were included. Studies were clinically and methodologically diverse. We identified sufficient evidence that structured exercise, incorporating progressive resistance training delivered to people who had undergone hip fracture surgery, and multicomponent exercise, delivered to people at risk of primary fracture, reduced risk of falling. The effectiveness of multidisciplinary fracture liaison services in reducing refracture rate was confirmed. There was insufficient evidence found to support the effectiveness of nutrients and falls prevention programmes in this patient population. CONCLUSION: Despite study heterogeneity, our SLR showed beneficial effects of some interventions delivered by non-physician health professionals and the positive impact of multidisciplinary team working and patient educational approaches to prevent and manage osteoporotic fractures. These results informed a EULAR taskforce that developed points to consider for non-physician health professionals to prevent and manage osteoporotic fractures.


Subject(s)
Accidental Falls/prevention & control , Bone Density Conservation Agents/therapeutic use , Dietary Supplements , Health Personnel , Osteoporosis/therapy , Osteoporotic Fractures/prevention & control , Exercise , Humans , Medication Adherence , Nurses , Nutritionists , Occupational Therapists , Osteoporosis/complications , Osteoporotic Fractures/etiology , Osteoporotic Fractures/therapy , Pharmacists , Physical Therapists , Practice Guidelines as Topic , Primary Prevention , Randomized Controlled Trials as Topic
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