Published in 2021

A new tool to assess Clinical Diversity In Meta-analyses (CDIM) of interventions

Barbateskovic, M., Koster, T. M., Eck, R. J., Maagaard, M., Afshari, A., Blokzijl, F., Cronhjort, M., Dieperink, W., Fabritius, M. L., Feinberg, J., French, C., Gareb, B., Geisler, A., Granholm, A., Hiemstra, B., Hu, R., Imberger, G., Jensen, B. T., Jonsson, A. B., Karam, O., & 25 flereKong, D. Z., Korang, S. K., Koster, G., Lai, B., Liang, N., Lundstrøm, L. H., Marker, S., Meyhoff, T., Nielsen, E. E., Nørskov, A. K., Munch, M. W., Risom, E. C., Rygård, S. L., Safi, S., Sethi, N., Sjövall, F., Lauridsen, S. V., van Bakelen, N., Volbeda, M., van der Horst, I., Gluud, C., Perner, A., Møller, M. H., Keus, F. & Wetterslev, J., jul. 2021, I: Journal of Clinical Epidemiology. 135, s. 29-41 13 s.

Publikation: Bidrag til tidsskriftTidsskriftartikelForskningpeer review

OBJECTIVE: To develop and validate Clinical Diversity In Meta-analyses (CDIM), a new tool for assessing clinical diversity between trials in meta-analyses of interventions.

STUDY DESIGN AND SETTING: The development of CDIM was based on consensus work informed by empirical literature and expertise. We drafted the CDIM tool, refined it, and validated CDIM for interrater scale reliability and agreement in three groups.

RESULTS: CDIM measures clinical diversity on a scale that includes four domains with 11 items overall: setting (time of conduct/country development status/units type); population (age; sex; patient inclusion criteria/baseline disease severity, comorbidities); interventions (intervention intensity/strength/duration of intervention; timing; control intervention; cointerventions);and outcome (definition of outcome; timing of outcome assessment). The CDIM is completed in two steps: first two authors independently assess clinical diversity in the four domains. Second, after agreeing upon scores of individual items a consensus score is achieved. Interrater scale reliability and agreement ranged from moderate to almost perfect depending on the type of raters.

CONCLUSION: CDIM is the first tool developed for assessing clinical diversity in meta-analyses of interventions. We found CDIM to be a reliable tool for assessing clinical diversity among trials in meta-analysis.

Originalsprog Engelsk
Tidsskrift Journal of Clinical Epidemiology
Vol/bind 135
Sider (fra-til) 29-41
Antal sider 13
ISSN 0895-4356
DOI
Status Udgivet - jul. 2021
Originalsprog Engelsk
Tidsskrift Archives of Physiotherapy
ISSN 2057-0082
Status Afsendt - jun. 2021

A systematic review and meta-analysis of observational studies on the association between animal protein sources and risk of rheumatoid arthritis

Asoudeh, F., Jayedi, A., Kavian, Z., Ebrahimi-Mousavi, S., Nielsen, S. M. & Mohammadi, H., jul. 2021, I: Clinical nutrition (Edinburgh, Scotland). 40, 7, s. 4644-4652 9 s.

Publikation: Bidrag til tidsskriftReviewpeer review

OBJECTIVE: The aim of this study was to investigate the linear and nonlinear dose-response associations of animal-based dietary protein intake and risk of developing rheumatoid arthritis (RA).

METHODS: A systematic search of MEDLINE, Scopus and Embase was conducted up to October 2020. Observational studies that report risk estimates of RA for animal-based protein consumption were included. We calculated pooled relative risks (RRs) by using a random-effects model. Linear and non-linear dose-response analyses were performed to examine the dose-response relations between animal-based protein consumption and RA.

RESULTS: Seven cohort studies (n = 457,554) with 3545 incident cases and six case-control studies with 3994 cases and 5252 controls were identified. Highest compared with the lowest category of fish consumption was inversely associated with risk of RA (RR: 0.89; 95% CI, 0.80 to 0.99; I2 = 0%, n = 10). Also, a 100 g/day increment in fish intake was associated with a 15% decreased risk of RA. Dose-response analysis showed a modest U-shaped association between fish consumption and incidence of RA, with the lowest risk at a fish intake of 20-30 g/day (Pnon-linearity = 0.04). We found no significant association between consumption of red meat, poultry or dairy and the risk of RA.

CONCLUSION: The present study revealed a significant reverse association between fish consumption and risk of RA. While we observed no association between red meat, dairy or poultry consumption and risk of RA. Further well-designed prospective studies are needed to support our findings.

Originalsprog Engelsk
Tidsskrift Clinical nutrition (Edinburgh, Scotland)
Vol/bind 40
Udgave nummer 7
Sider (fra-til) 4644-4652
Antal sider 9
ISSN 0261-5614
DOI
Status Udgivet - jul. 2021

A Systematic Review of Job Loss Prevention Interventions for Persons with Inflammatory Arthritis

Madsen, C. M. T., Bisgaard, S. K., Primdahl, J., Christensen, J. R. & von Bülow, C., dec. 2021, I: Journal of Occupational Rehabilitation. 31, 4, s. 866-885 20 s.

Publikation: Bidrag til tidsskriftReviewpeer review

Purpose To present an overview of the evidence of the effect of job loss prevention interventions, aiming to improve work ability and decrease absenteeism and/or job loss in persons with inflammatory arthritis (IA). Method A systematic literature search in the databases PubMed, EMBASE, CINAHL, PsycINFO and the Cochrane Library was conducted. A search strategy used in a review from 2014 was copied and additional keywords were added with no time restriction. The Cochrane Risk of Bias Tool (RoB 1) was used for quality assessment and the overall quality of each study was determined using predetermined cut-off criteria, categorising studies to be of good-, acceptable- or low quality. Results were summarised narratively. Results Six randomised controlled trials (published in seven articles) were included, one of good quality and five of acceptable quality. One study identified significant improvements in work ability, while three found no significant difference between groups. One study identified significant difference in absenteeism, while two studies identified no difference between the intervention and control groups. Two studies identified significant reduction in job loss, while two studies identified no group difference. The inconsistent results may be due to heterogeneity in interventions and outcome measures used, and the results should therefore be interpreted with caution. Conclusion The results indicate that job loss prevention interventions may have an effect on work ability, absenteeism and in particular job loss among persons with IA. Further good-quality studies regarding job loss prevention interventions for people with IA are still recommended.

Originalsprog Engelsk
Tidsskrift Journal of Occupational Rehabilitation
Vol/bind 31
Udgave nummer 4
Sider (fra-til) 866-885
Antal sider 20
ISSN 1053-0487
DOI
Status Udgivet - dec. 2021

Bibliografisk note

Publisher Copyright:
© 2021, The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.

A systematic review of worldwide data on tinea capitis: analysis of the last 20 years

Rodríguez-Cerdeira, C., Martínez-Herrera, E., Szepietowski, J. C., Pinto-Almazán, R., Frías-De-León, M. G., Espinosa-Hernández, V. M., Chávez-Gutiérrez, E., García-Salazar, E., Vega-Sánchez, D. C., Arenas, R., Hay, R. & Saunte, D. M., apr. 2021, I: Journal of the European Academy of Dermatology and Venereology : JEADV. 35, 4, s. 844-883 40 s.

Publikation: Bidrag til tidsskriftTidsskriftartikelForskningpeer review

A Theory- and Evidence-Based Digital Intervention Tool for Weight Loss Maintenance (NoHoW Toolkit): Systematic Development and Refinement Study

Marques, M. M., Matos, M., Mattila, E., Encantado, J., Duarte, C., Teixeira, P. J., Stubbs, R. J., Sniehotta, F. F., Ermes, M., Harjumaa, M., Leppänen, J., Välkkynen, P., Silva, M. N., Ferreira, C., Carvalho, S., Palmeira, L., Horgan, G., Heitmann, B. L., Evans, E. H. & Palmeira, A. L., 3 dec. 2021, I: Journal of Medical Internet Research. 23, 12, s. e25305 e25305.

Publikation: Bidrag til tidsskriftTidsskriftartikelForskningpeer review

BACKGROUND: Many weight loss programs show short-term effectiveness, but subsequent weight loss maintenance is difficult to achieve. Digital technologies offer a promising means of delivering behavior change approaches at low costs and on a wide scale. The Navigating to a Healthy Weight (NoHoW) project, which was funded by the European Union's Horizon 2020 research and innovation program, aimed to develop, test, and evaluate a digital toolkit designed to promote successful long-term weight management. The toolkit was tested in an 18-month, large-scale, international, 2×2 factorial (motivation and self-regulation vs emotion regulation) randomized controlled trial that was conducted on adults with overweight or obesity who lost ≥5% of their body weight in the preceding 12 months before enrollment into the intervention.

OBJECTIVE: This paper aims to describe the development of the NoHoW Toolkit, focusing on the logic models, content, and specifications, as well as the results from user testing.

METHODS: The toolkit was developed by using a systematic approach, which included the development of the theory-based logic models, the selection of behavior change techniques, the translation of these techniques into a web-based app (NoHoW Toolkit components), technical development, and the user evaluation and refinement of the toolkit.

RESULTS: The toolkit included a set of web-based tools and inputs from digital tracking devices (smart scales and activity trackers) and modules that targeted weight, physical activity, and dietary behaviors. The final toolkit comprised 34 sessions that were distributed through 15 modules and provided active content over a 4-month period. The motivation and self-regulation arm consisted of 8 modules (17 sessions), the emotion regulation arm was presented with 7 modules (17 sessions), and the combined arm received the full toolkit (15 modules; 34 sessions). The sessions included a range of implementations, such as videos, testimonies, and questionnaires. Furthermore, the toolkit contained 5 specific data tiles for monitoring weight, steps, healthy eating, mood, and sleep.

CONCLUSIONS: A systematic approach to the development of digital solutions based on theory, evidence, and user testing may significantly contribute to the advancement of the science of behavior change and improve current solutions for sustained weight management. Testing the toolkit by using a 2×2 design provided a unique opportunity to examine the effect of motivation and self-regulation and emotion regulation separately, as well as the effect of their interaction in weight loss maintenance.

Originalsprog Engelsk
Artikelnummer e25305
Tidsskrift Journal of Medical Internet Research
Vol/bind 23
Udgave nummer 12
Sider (fra-til) e25305
ISSN 1439-4456
DOI
Status Udgivet - 3 dec. 2021

Bibliografisk note

©Marta M Marques, Marcela Matos, Elina Mattila, Jorge Encantado, Cristiana Duarte, Pedro J Teixeira, R James Stubbs, Falko F Sniehotta, Miikka Ermes, Marja Harjumaa, Juha Leppänen, Pasi Välkkynen, Marlene N Silva, Cláudia Ferreira, Sérgio Carvalho, Lara Palmeira, Graham Horgan, Berit Lilienthal Heitmann, Elizabeth H Evans, António L Palmeira. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 03.12.2021.

Adaptation and Validation of a Questionnaire to Evaluate Knowledge of the Low Phe Diet in PKU

Ramos-Álvarez, R., Kapp, M., Rodríguez-Ruiz, M. M., Fausor, R., Bueno-Delgado, M. A., Ahring, K. & Waisbren, S. E., 7 aug. 2021, I: Nutrients. 13, 8, 2719.

Publikation: Bidrag til tidsskriftTidsskriftartikelForskningpeer review

This study reports age- and sex-specific incidence rates of juvenile idiopathic arthritis (JIA) in complete Danish birth cohorts from 1992 through 2002. Data were obtained from the Danish registries. All persons born in Denmark, from 1992-2002, were followed from birth and until either the date of first diagnosis recording, death, emigration, 16th birthday or administrative censoring (17 May 2017), whichever came first. The number of incident JIA cases and its incidence rate (per 100,000 person-years) were calculated within sex and age group for each of the birth cohorts. A multiplicative Poisson regression model was used to analyze the variation in the incidence rates by age and year of birth for boys and girls separately. The overall incidence of JIA was 24.1 (23.6-24.5) per 100,000 person-years. The rate per 100,000 person-years was higher among girls (29.9 (29.2-30.7)) than among boys (18.5 (18.0-19.1)). There were no evident peaks for any age group at diagnosis for boys but for girls two small peaks appeared at ages 0-5 years and 12-15 years. This study showed that the incidence rates of JIA in Denmark were higher for girls than for boys and remained stable over the observed period for both sexes.

Originalsprog Engelsk
Artikelnummer 8331
Tidsskrift International Journal of Environmental Research and Public Health
Vol/bind 18
Udgave nummer 16
ISSN 1661-7827
DOI
Status Udgivet - 6 aug. 2021

An increase in use of antifungals for superficial infections in Denmark during 1997-2018

Lindsø Andersen, P., Jemec, G. B., Pedersen, O. B. & Saunte, D. M., jan. 2021, I: APMIS - Journal of Pathology, Microbiology and Immunology. 129, 1, s. 32-34 3 s.

Publikation: Bidrag til tidsskriftTidsskriftartikelForskningpeer review

Anticoagulant selection in relation to the SAMe-TT2R2 score in patients with atrial fibrillation: The GLORIA-AF registry

GLORIA-AF Investigators, 2021, I: Hellenic journal of cardiology : HJC = Hellenike kardiologike epitheorese. 62, 2, s. 152-157 6 s.

Publikation: Bidrag til tidsskriftTidsskriftartikelForskningpeer review

Anvendelse af exom-sekventering (WES) og helgenom-sekventering (WGS) i prænatal diagnostik

Petersen, OB., 7 jun. 2021, 1.0 udg. 28 s.

Publikation: Bog/antologi/afhandling/rapportRapportRådgivning

Appraisal of Candidate Instruments for Assessment of the Physical Function Domain in Patients with Psoriatic Arthritis

Leung, Y. Y., Orbai, A-M., Ogdie, A., Hojgaard, P., Holland, R., Goel, N., Chau, J., Coates, L. C., Strand, V., Gladman, D. D., Mease, P. J., Christensen, R. & Tillett, W., 1 jan. 2021, I: Journal of Rheumatology. 48, 1, s. 58-66 9 s.

Publikation: Bidrag til tidsskriftTidsskriftartikelForskningpeer review

OBJECTIVE: Numerous patient-reported outcome measures (PROM) exist for the measurement of physical function for psoriatic arthritis (PsA), but only a few are validated comprehensively. The objective of this project was to prioritize PROM for measuring physical function for potential incorporation into a standardized outcome measurement set for PsA.

METHODS: A working group of 13 members including 2 patient research partners was formed. PROM measuring physical function in PsA were identified through a systematic literature review and recommendations by the working group. The rationale for inclusion and exclusion from the original list of existing PROM was thoroughly discussed and 2 rounds of Delphi exercises were conducted to achieve consensus.

RESULTS: Twelve PROM were reviewed and discussed. Six PROM were prioritized: Health Assessment Questionnaire (HAQ) and 4 modifications (HAQ-Disability Index, HAQ-Spondyloarthritis, modified HAQ, multidimensional HAQ), Medical Outcomes Study 36-item Short Form survey physical functioning domain, and the Patient-Reported Outcomes Measurement Information System (PROMIS) physical functioning module.

CONCLUSION: Through discussion and Delphi exercises, we achieved consensus to prioritize 6 physical function PROM for PsA. These 6 PROM will undergo further appraisal using the Outcome Measures in Rheumatology (OMERACT) Filter 2.1.

Originalsprog Engelsk
Tidsskrift Journal of Rheumatology
Vol/bind 48
Udgave nummer 1
Sider (fra-til) 58-66
Antal sider 9
ISSN 0315-162X
DOI
Status Udgivet - 1 jan. 2021

Arbejdsvilkår i Akutmedicin skal optimeres per omgående

Perko, M., Juul Larsen, J. & Schmidt, T. A., 15 nov. 2021, I: Ugeskrift for læger [online].

Publikation: Bidrag til tidsskriftTidsskriftartikelForskningpeer review

Are survivors of cardiac arrest provided with standard cardiac rehabilitation? - Results from a national survey of hospitals and municipalities in Denmark

Tang, L. H., Joshi, V., Egholm, C. L. & Zwisler, A-D., 1 feb. 2021, I: European Journal of Cardiovascular Nursing. 20, 2, s. 115-123 9 s.

Publikation: Bidrag til tidsskriftTidsskriftartikelForskningpeer review

By utilizing historical changes in Danish legislation related to mandatory vitamin D fortification of margarine, which was implemented in the mid 1930s and abruptly abandoned in June 1985, the studies in the D-tect project investigated the effects of vitamin D on health outcomes in individuals, who during gestation were exposed or unexposed to extra vitamin D from fortified margarine. This paper reviews and narratively summarizes the analytic approaches alongside the results of the societal fortification experiment studies from the D-tect project and addresses the challenges in designing societal experiment studies and evaluating their results. The latter are discussed as lessons learned that may be useful for designers of similar studies, expected to be extensively utilized while researching the health consequences of the COVID-19 pandemic by comparing individuals born before and after the epidemic. In the D-tect project, 16 articles based on the societal fortification experiment were published analyzing 10 different outcomes and using different statistical approaches. Lessons learned included the detail of the analysis of the historical information on the exposure, availability and validity of the outcome data, variety of analytical approaches, and specifics concerning vitamin D effect evaluation, such as consideration of the influence of sunshine or season. In conclusion, the D-tect project clearly demonstrated the cost-effectiveness and research potential of natural- or societal-experiment-based studies.

Originalsprog Engelsk
Artikelnummer 8136
Tidsskrift International Journal of Environmental Research and Public Health
Vol/bind 18
Udgave nummer 15
ISSN 1661-7827
DOI
Status Udgivet - 31 jul. 2021

Assessing methods for evaluating the number of components in non-negative matrix factorization

Maisog, J. M., Demarco, A. T., Devarajan, K., Young, S., Fogel, P. & Luta, G., 1 nov. 2021, I: Mathematics. 9, 22, 2840.

Publikation: Bidrag til tidsskriftTidsskriftartikelForskningpeer review

Non-negative matrix factorization is a relatively new method of matrix decomposition which factors an m×n data matrix X into an m×k matrix W and a k×n matrix H, so that X≈W×H. Importantly, all values in X, W, and H are constrained to be non-negative. NMF can be used for dimensionality reduction, since the k columns of W can be considered components into which X has been decomposed. The question arises: how does one choose k? In this paper, we first assess methods for estimating k in the context of NMF in synthetic data. Second, we examine the effect of normalization on this estimate's accuracy in empirical data. In synthetic data with orthogonal underlying components, methods based on PCA and Brunet's Cophenetic Correlation Coefficient achieved the highest accuracy. When evaluated on a well-known real dataset, normalization had an unpredictable effect on the estimate. For any given normalization method, the methods for estimating k gave widely varying results. We conclude that when estimating k, it is best not to apply normalization. If underlying components are known to be orthogonal, then Velicer's MAP or Minka's Laplace-PCA method might be best. However, when orthogonality of the underlying components is unknown, none of the methods seemed preferable.

Originalsprog Engelsk
Artikelnummer 2840
Tidsskrift Mathematics
Vol/bind 9
Udgave nummer 22
DOI
Status Udgivet - 1 nov. 2021

Bibliografisk note

Funding Information:
Funding: This research was funded by several sources. The work of K.D. was supported in part by NIH Grant P30 CA06927 and an appropriation from the Commonwealth of Pennsylvania. Work of A.D. was supported in part by NIH grants U10NS086513 and K12HD093427.

Publisher Copyright:
© 2021 by the authors. Licensee MDPI, Basel, Switzerland.

OBJECTIVE: We assessed the association of suPAR (soluble urokinase plasminogen activator receptor) plasma levels with fibrotic and vascular manifestations in patients with systemic sclerosis (SSc).

METHODS: suPAR plasma levels were measured in 121 consecutive patients with SSc and correlated to pulmonary and vascular features of SSc, including interstitial lung disease as characterized by percentage of predicted CO diffusing capacity (DLco) and forced vital capacity (FVC), pulmonary fibrosis by computed tomography, and pulmonary arterial hypertension, telangiectasias, and digital ulcers.

RESULTS: Overall, 121 SSc patients (84% females; mean age, 57 ± 12 [range: 22-79] years) were enrolled; 35% had diffuse cutaneous SSc. suPAR plasma levels ranged from 1.3-10.2 [median: 2.9 (p25-p75: 2.3-3.9)] ng/mL. Log(suPAR) levels correlated with DLco (r = -0.41, p <0.0001) and FVC (r = -0.26, p = 0.004), also when adjusted for age, sex, and pulmonary hypertension. A suPAR cut-off level of >2.5 ng/mL showed a sensitivity of 91% for identifying patients with either DLco <50% or FVC < 60% of the predicted values. Similarly, 19 (90%) had a suPAR >2.5 ng/mL among those diagnosed with pulmonary fibrosis vs. 59 (60%) among those who did not (p = 0.008). suPAR values were not associated with vascular manifestations.

CONCLUSION: suPAR levels strongly correlated with pulmonary involvement in SSc. Future studies should test if suPAR estimation can be used for surveillance of severe pulmonary involvement in SSc.

Originalsprog Engelsk
Tidsskrift PLoS One
Vol/bind 16
Udgave nummer 2
Sider (fra-til) e0247256
ISSN 1932-6203
DOI
Status Udgivet - 22 feb. 2021

Pickiness is an eating behavior that many families with young children face. Having joint family meals may impact the child's pickiness, for instance by influencing their willingness to try novel foods. Moreover, picky children have been shown to display greater emotionality. The aim of this study was to investigate if children's mental well-being and parent-reported conflicts during mealtime were associated with pickiness among obesity-prone children. Data was obtained from the baseline examination of the Healthy Start intervention study, the Danish Medical Birth registry and the Danish Health Visitor's Child Health Database, and included 635 children aged 2-6 years that were all at high risk for becoming overweight later in life. Children's mental well-being was measured by the strengths and difficulties questionnaire. Crude and adjusted ordinal logistic regressions were used to investigate the cross-sectional associations. Children had a higher odds associated with changing from a category of less pickiness to a category of more pickiness for each one point higher SDQ score (ORadj. = 1.35, 95% CI = 1.14; 1.61) and lower odds (ORadj. = 0.57, 95% CI = 0.38; 0.86) associated with changing pickiness category towards more pickiness for each one point higher SDQ prosocial score. Moreover, children with conflicts during mealtime had higher odds of being in a worse pickiness category compared to children without conflicts (ORadj. = 3.37, 95% CI = 2.27; 5.01). This study showed that among obesity-prone children, behavioral problems, as well as conflicts during mealtime, were associated with more picky behaviors. Further longitudinal studies are needed to confirm the findings, as are studies including general child population subsets.

Originalsprog Engelsk
Artikelnummer 5621
Tidsskrift International Journal of Environmental Research and Public Health
Vol/bind 18
Udgave nummer 11
ISSN 1661-7827
DOI
Status Udgivet - jun. 2021

BACKGROUND: Cross-sectional studies indicate that parental stress may be a barrier for healthy dietary behaviours among children. However, there is a lack of evidence from longitudinal studies on the association between parental stress and changes in dietary intake among toddlers. The aim of this study was to examine the association between parental stress and changes in dietary intake and quality among preschool children susceptible to obesity.

METHODS: In the Healthy Start study, parents to 250 preschool children had completed a modified version of the Parental Stress Index and assessed the dietary intake of their children at baseline and after 15 months of follow up. The association between parental stress and changes in dietary intake and quality was examined using multiple linear regression analyses with adjustment for potential confounders. We tested for potential effect modification by group allocation and sex.

RESULTS: There were no significant associations between parental stress and subsequent changes in child total energy intake, intake of macronutrients or intake of fruit, vegetables, sugar sweetened beverages, fish or starch, or dietary quality.

CONCLUSION: This study provides no evidence to support an association between parental stress and subsequent change in dietary intake and quality of their children.

TRIAL REGISTRATION: ClinicalTrials.gov, Trial number: NCT01583335, Registered: 31 March 2012, retrospectively registered.

Originalsprog Engelsk
Artikelnummer 3590
Tidsskrift International Journal of Environmental Research and Public Health
Vol/bind 18
Udgave nummer 7
ISSN 1661-7827
DOI
Status Udgivet - apr. 2021

Awareness and Expectations Surrounding Family Planning and Pregnancy Among Danish Patients with Chronic Inflammatory Disease of the Skin or Joints: Results from an Online Survey

Johansen, C. B., Laurberg, T. B., Egeberg, A., Jensen, U. F. A., Hansen, A. L., Skov, L., Kristensen, L. E., Thomsen, S. F. & Schreiber, K., 14 aug. 2021, I: Rheumatology and Therapy. 8, 3, s. 1419-1433 15 s.

Publikation: Bidrag til tidsskriftTidsskriftartikelForskningpeer review

Background: Patients with chronic inflammatory diseases (CIDs) may encounter challenges in their family planning journey. Here, we report on the access to family planning and pregnancy (FPP) information and the concerns among patients in Denmark with CIDs. Methods: Patients aged 18–50 years with CIDs participated in an online survey. Patients were recruited through patient advocacy groups and were asked to report information on their diagnosis, concerns related to FPP and perceptions of access to FPP information. Descriptive statistics were applied. Results: Of the eligible respondents, 368 had rheumatological diagnoses (rheumatoid arthritis, psoriatic arthritis, juvenile idiopathic arthritis or axial spondyloarthritis; mean age 40 years; 83% women, 17% men) and 95 had dermatological diagnoses (psoriasis or psoriatic arthritis; mean age 38 years; 67% women, 33% men). Approximately 70% of all patients reported seeking FPP information from patient advocacy groups; 57% of both cohorts used the internet as information sources; and 73% and 42% of rheumatological and dermatological cohorts used their hospital and specialist doctor, respectively. Despite this, 58% and 67% of patients with rheumatological and dermatological diagnoses reported limited or no access to FPP information, with > 70% of dermatological patients of early/mid-reproductive age reporting a lack of access to this information. Overall, 68% of patients with rheumatological and 73% with dermatological diagnoses had biological children, amongst whom 24% and 18%, respectively, indicated their disease affected the number of children they ultimately decided to have. The most frequent FPP concerns among patients who did not want any/more biological children were disease worsening, heredity and taking care of the child. Conclusions: Despite awareness of available sources of FPP information, patients expressed experiencing a feeling of limited access to information and having concerns that affect key decisions regarding FPP. The results of this survey highlight a need for improved and more standardised FPP information for patients with CIDs in Denmark.

Originalsprog Engelsk
Tidsskrift Rheumatology and Therapy
Vol/bind 8
Udgave nummer 3
Sider (fra-til) 1419-1433
Antal sider 15
ISSN 2198-6576
DOI
Status Udgivet - 14 aug. 2021

Bibliografisk note

Funding Information:
The authors also acknowledge Vanessa Omnou, MSc, and Beverley Wilson, PhD, Costello Medical, UK, for medical writing and editorial assistance based on the authors’ input and direction. This study was funded by UCB Pharma in accordance with Good Publication Practice (GPP3) guidelines ( http://www.ismpp.org/gpp3 ).

Funding Information:
The authors thank the participants, the patient advocacy groups (The Arthritis Association [Gigtforeningen], The Association for Spinal Arthritis and Bechterew's Disease [Foreningen for Rygs?jlegigt og Morbus Bechterew] and The Psoriasis Association [Psoriasisforeningen]), the investigators and their teams who took part in this study. Survey implementation and data collection was managed by Incentive Denmark. This study and Rapid Service Fee was funded by UCB Pharma. The authors also acknowledge Vanessa Omnou, MSc, and Beverley Wilson, PhD, Costello Medical, UK, for medical writing and editorial assistance based on the authors? input and direction. This study was funded by UCB Pharma in accordance with Good Publication Practice (GPP3) guidelines (http://www.ismpp.org/gpp3). All named authors meet the International Committee of Medical Journal Editors (ICMJE) criteria for authorship for this article, take responsibility for the integrity of the work as a whole, and have given their approval for this version to be published. Substantial contributions to study conception and design: C?cilie B Johansen, Trine B Laurberg, Alexander Egeberg, Ulla-Fie A Jensen, Asbj?rn L Hansen, Lone Skov, Lars E Kristensen, Simon F Thomsen and Karen Schreiberf. Substantial contributions to analysis and interpretation of the data: C?cilie B Johansen, Trine B Laurberg, Alexander Egeberg, Ulla-Fie A Jensen, Asbj?rn L Hansen, Lone Skov, Lars E Kristensen, Simon F Thomsen and Karen Schreiberf. Drafting the article or revising it critically for important intellectual content: C?cilie B Johansen, Trine B Laurberg, Alexander Egeberg, Ulla-Fie A Jensen, Asbj?rn L Hansen, Lone Skov, Lars E Kristensen, Simon F Thomsen and Karen Schreiberf. Final approval of the version of the article to be published: C?cilie B Johansen, Trine B Laurberg, Alexander Egeberg, Ulla-Fie A Jensen, Asbj?rn L Hansen, Lone Skov, Lars E Kristensen, Simon F Thomsen and Karen Schreiberf. An abstract summarising data from this manuscript was submitted to, and accepted for poster presentation at the European Alliance of Associations for Rheumatology (EULAR) 2020 Virtual Congress (from 3 June 2020; online): Schreiber K, Johansen C, Jensen UF, et al. PARE0024 Awareness about family planning and pregnancy expectation among patients with chronic inflammatory disease of the skin or joints (Annals of the Rheumatic Diseases 2020;79:1297?1298). C?cilie B Johansen: Advisory Boards for UCB Pharma; honoraria as consultant and/or speaker for Galderma, Estee Lauder Companies L'Or?al. Trine B Laurberg: Consultant and/or Advisory Boards for AbbVie and UCB Pharma. Karen Schreiberf: Consultant and/or Advisory Boards for UCB Pharma. Alexander Egeberg: Research funding from AbbVie, Bristol-Myers Squibb, the Danish National Psoriasis Foundation, Eli Lilly, Janssen Pharmaceuticals, the Royal Hofbundtmager Aage Bang Foundation, the Simon Spies Foundation, Novartis and Pfizer; honoraria as consultant and/or speaker from AbbVie, Almirall, Bristol-Myers Squibb, Dermavant, Eli Lilly, Janssen Pharmaceuticals, Galapagos NV, Galderma, LEO Pharma, Mylan, Novartis, Pfizer, Samsung Bioepis Co. Ltd., Sun Pharmaceuticals and UCB Pharma. Ulla-Fie A Jensen: Employee of UCB Pharma. Asbj?rn L Hansen: Former employee of UCB Pharma. Lone Skov: Speaker for AbbVie, Sanofi, Eli Lilly, LEO Pharma and Novartis; consultant and/or Advisory Boards for AbbVie, Almirall, Eli Lilly, Janssen Pharmaceuticals, LEO Pharma, Novartis, UCB Pharma, BMS and Sanofi; research and educational grants from AbbVie, Janssen Pharmaceuticals, LEO Pharma, Novartis, BMS and Sanofi. Lars E Kristensen: Consultant and/or Advisory Boards and/or speaker for AbbVie, Amgen, Biogen, Bristol-Myers Squibb, Eli Lilly, Gilead, Janssen Pharmaceuticals, MSD, Novartis, Pfizer, Sanofi and UCB Pharma. Simon F Thomsen: Consultant and/or Advisory Boards for AbbVie, Almirall, Celgene, Eli Lilly, Janssen Pharmaceuticals, LEO Pharma, Novartis, Pfizer, Roche and Sanofi; speaker for AbbVie, Eli Lilly, LEO Pharma, Novartis, Sanofi and UCB Pharma; research support from Abbvie, LEO Pharma, Janssen Pharmaceuticals, Novartis, Sanofi and UCB Pharma. Ethics approval was not required for this study. Under Danish legislation, questionnaire survey projects not involving human biological material are exempt from the obligation to notify the scientific ethics committee (Section 14 (2) of the Committee Act). Respondents were provided information on the conduct of the survey and had to provide consent before participating. Respondents were informed that the knowledge collected in the survey would be published and had to provide consent before participating. Data from non-clinical studies is outside of UCB?s data-sharing policy.

Publisher Copyright:
© 2021, The Author(s).

Copyright:
Copyright 2021 Elsevier B.V., All rights reserved.

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