المؤلفون: Langbroek, GB, Wolkerstorfer, A, Horbach, SER, Spuls, PI, Kelly, KM, Robertson, SJ, van Raath, MI, Al‐Niaimi, F, Kono, T, Boixeda, P, Laubach, HJ, Badawi, AM, Rubin, A Troilius, Haedersdal, M, Manuskiatti, W, van der Horst, CMAM, Ubbink, DT, group, the COSCAM study

المصدر: Journal of the European Academy of Dermatology and Venereology. 35(9)

مصطلحات موضوعية: Biomedical and Clinical Sciences, Clinical Sciences, Capillaries, Delphi Technique, Endpoint Determination, Humans, Outcome Assessment, Health Care, Research Design, Systematic Reviews as Topic, Treatment Outcome, Vascular Malformations, COSCAM study group, Dermatology & Venereal Diseases, Clinical sciences

الوصف: BackgroundDue to a large variety in treatment outcomes reported in therapeutic trials and lacking patient-relevant outcomes, it is hard to adequately compare and improve current therapies for patients with capillary malformations (CMs). The Core Outcome Set for Capillary Malformations (COSCAM) project aims to develop a core outcome set (COS) for use in future CM trials, in which we will first develop a core outcome (sub)domain set (CDS). Here, we describe the methods for the development of a CDS and present the results of the first development stage.MethodsThe COSCAM project is carried out according to the recommendations of the Cochrane Skin Core OUtcomes Set INitiative (CS-COUSIN) and the Core Outcome Measures in Effectiveness Trials (COMET) initiative. During the first stage, we identified all potentially relevant outcome subdomains based on a systematic review, two focus group sessions and input from patient representatives of Dutch patient organizations and the COSCAM-founding group. In stage two, we will present the subdomains in a three-round e-Delphi study and online consensus meeting, in which CM patients, parents/caregivers and CM experts worldwide rate the importance of the proposed subdomains, hereby finalizing the core outcome (sub)domains of the CDS.ResultsA total of 67 potential outcome subdomains were included; sixteen were previously used in the literature, 20 were proposed by Dutch patients and their parents/caregivers (n = 13) in focus group sessions and 38 were suggested by the experts of the COSCAM-founding group. Seven were excluded because of overlap.ConclusionThe final CDS may serve as a minimum standard in future CM trials, thereby facilitating adequate comparison of treatment outcomes. After this CDS development, we will select appropriate outcome measurement instruments to measure the core outcome subdomains.

وصف الملف: application/pdf

الوصول الحر: https://escholarship.org/uc/item/1jv816krTest
https://escholarship.org/content/qt1jv816kr/qt1jv816kr.pdfTest

المؤلفون: Lokhorst, MM, Horbach, SER, Young-Afat, DA, Stor, MLE, Haverman, L, Spuls, PI, van der Horst, CMAM, OVAMA Steering Group

الوصف: BACKGROUND: The symptoms and appearance of vascular malformations can severely harm a patient's quality of life. The aim of treatment of vascular malformations generally is to improve condition-specific symptoms and/or appearance. Therefore, it is highly important to start testing treatment effects in clinical studies from the patient's perspective. OBJECTIVES: To develop a patient-reported outcome measure for measuring symptoms and appearance in patients with vascular malformations. METHODS: A first draft of the patient-reported outcome measure was based on the previously internationally developed core outcome set. The qualitative part of this study involved interviews with 14 patients, which led to a second draft. The second draft was field tested cross-sectionally, after which groups of items were evaluated for adequate internal consistency (Cronbach's alpha > 0·7) to form composite scores. Construct validity was evaluated by testing 13 predefined hypotheses on known-group differences. RESULTS: The patient interviews ensured adequate content validity and resulted in a general symptom scale with six items, a head and neck symptom scale with eight items, and an appearance scale with nine items. Cronbach's alpha was adequate for two composite scores: a general symptom score (0·88) and an appearance score (0·85). Ten out of 13 hypotheses on known-group differences were confirmed, confirming adequate construct validity. CONCLUSIONS: With the development of the OVAMA questionnaire, outcomes of patients with vascular malformations can now be evaluated from the patient's perspective. This may help improve the development of evidence-based treatments and the overall care for patients with vascular malformations.

العلاقة: Lokhorst, M. M., Horbach, S. E. R., Young-Afat, D. A., Stor, M. L. E., Haverman, L., Spuls, P. I., van der Horst, C. M. A. M. & OVAMA Steering Group, (2021). Development of a condition-specific patient-reported outcome measure for measuring symptoms and appearance in vascular malformations: the OVAMA questionnaire. Br J Dermatol, 185 (4), pp.797-803. https://doi.org/10.1111/bjd.20429Test.; http://hdl.handle.net/11343/280667Test

الإتاحة: https://doi.org/10.1111/bjd.20429Test
http://hdl.handle.net/11343/280667Test

المؤلفون: Horbach, SER, Rongen, APM, Elbers, RG, van der Horst, CMAM, Prinsen, CAC, Spuls, PI, Collaborators OVAMA consensus group

الوصف: PURPOSE: The Outcome measures for vascular malformation (OVAMA) group reached consensus on the core outcome domains for the core outcome set (COS) for peripheral vascular malformations (venous, lymphatic and arteriovenous malformations). However, it is unclear which instruments should be used to measure these domains. Therefore, our aims were to identify all outcome measurement instruments available for vascular malformations, and to evaluate their measurement properties. METHODS: With the first literature search, we identified outcomes and instruments previously used in prospective studies on vascular malformations. A second search yielded studies on measurement properties of patient- and physician-reported instruments that were either developed for vascular malformations, or used in prospective studies. If the latter instruments were not specifically validated for vascular malformations, we performed a third search for studies on measurement properties in clinically similar diseases (vascular or lymphatic diseases and benign tumors). We assessed the methodological quality of these studies following the Consensus-based Standards for the selection of health Measurement Instruments methodology, and evaluated the quality of the measurement properties. RESULTS: The first search yielded 27 studies, none using disease-specific instruments. The second and third search included 22 development and/or validation studies, concerning six instruments. Only the Lymphatic Malformation Function Instrument was developed specifically for vascular malformations. Other instruments were generic QoL instruments developed and/or partly validated for clinically similar diseases. CONCLUSIONS: Additional research on measurement properties is needed to assess which instruments may be included in the COS. This review informs the instrument selection and/or the development of new instruments. SYSTEMATIC REVIEW REGISTRATION: PROSPERO, 42017056242.

العلاقة: pii: 10.1007/s11136-019-02301-x; Horbach, S. E. R., Rongen, A. P. M., Elbers, R. G., van der Horst, C. M. A. M., Prinsen, C. A. C., Spuls, P. I. & Collaborators OVAMA consensus group, (2020). Outcome measurement instruments for peripheral vascular malformations and an assessment of the measurement properties: a systematic review. Qual Life Res, 29 (1), pp.1-17. https://doi.org/10.1007/s11136-019-02301-xTest.; http://hdl.handle.net/11343/246899Test

الإتاحة: https://doi.org/10.1007/s11136-019-02301-xTest
http://hdl.handle.net/11343/246899Test

المؤلفون: Basart, H, Suttie, M, Ibrahim, A, Ferretti, P, van der Horst, CMAM, Hennekam, RC, Hammond, P

المصدر: The Journal of Craniofacial Surgery , 29 (8) pp. 2106-2109. (2018)

مصطلحات موضوعية: 3D facial scanning, 3D photogrammetry, CT imaging, mandibular volume, micrognathia, robin sequence

الوصف: BACKGROUND: Micrognathia occurs isolated and as part of entities like Robin sequence (RS). An objective measurement of mandible size and growth is needed to determine the degree of micrognathia and enable a comparison of treatment outcomes. A pilot study was conducted to investigate the usability of 3-dimensional (3D) facial photogrammetry, a fast, noninvasive method, to estimate mandible size and growth in a small cohort of newborns and infants. METHODS: Exterior mandibular volume was estimated using a tetrahedron defined by 4 facial landmarks. Twelve patients with RS with different etiologies were selected and photogrammetric images were obtained prospectively in 3 patients with RS in whom mandibular growth in the first year of life was determined. We used 3 tetrahedra defined by 6 landmarks on mandibular computed tomography (CT) scans to estimate an interior mandibular volume, which we compared to the exterior mandibular volume in 10 patients. RESULTS: The exterior mandibular volume using 3D photography could be determined in all patients. Signature heat maps allowed visualization of facial dysmorphism in 3D; signature graphs demonstrated similarities of facial dysmorphism in patients with the same etiology and differences from those with other diagnoses and from controls. The correlation between interior (3D photogrammetry) and exterior mandibular volumes (CT imaging) was 0.8789. CONCLUSION: The 3D facial photogrammetry delineates the general facial characteristics in patients with different syndromes involving micrognathia, and can objectively estimate mandibular volume and growth, with excellent correlation with bony measurement. It has been concluded that 3D facial photogrammetry could be a clinically effective instrument for delineating and quantifying micrognathia.

وصف الملف: text

العلاقة: https://discovery.ucl.ac.uk/id/eprint/10063793/1/Ferretti_3d_2018.07.11%20Accepted.pdfTest; https://discovery.ucl.ac.uk/id/eprint/10063793Test/

الإتاحة: https://discovery.ucl.ac.uk/id/eprint/10063793/1/Ferretti_3d_2018.07.11%20Accepted.pdfTest
https://discovery.ucl.ac.uk/id/eprint/10063793Test/

المؤلفون: Horbach, SER, van der Horst, CMAM, Blei, F, van der Vleuten, CJM, Frieden, IJ, Richter, GT, Tan, ST, Muir, T, Penington, AJ, Boon, LM, Spuls, PI

الوصف: BACKGROUND: An important limitation in vascular malformation research is the heterogeneity in outcome measures used for the evaluation of treatment outcome. OBJECTIVES: To reach international consensus on a core outcome set (COS) for clinical research on peripheral vascular malformations: lymphatic (LM), venous (VM) and arteriovenous malformations (AVM). In this consensus study, we determined what domains should constitute the COS. METHODS: Thirty-six possibly relevant outcome domains were proposed to an international group of physicians, patients and the parents of patients. In a three-round e-Delphi process using online surveys, participants repeatedly rated the importance of these domains on a five-point Likert scale. Participants could also propose other relevant domains. This process was performed for LM, VM and AVM separately. Consensus was predefined as 80% agreement on the importance of a domain among both the physician group and the patient/parent group. Outcomes were then re-evaluated in an online consensus meeting. RESULTS: 167 physicians and 134 patients and parents of patients with LM (n = 50), VM (n = 71) and AVM (n = 29) participated in the study. After three rounds and a consensus meeting, consensus was reached for all three types of vascular malformations on the core domains of radiological assessment, physician-reported location-specific signs, patient-reported severity of symptoms, pain, quality of life, satisfaction and adverse events. Vascular malformation type-specific signs and symptoms were included for LM, VM and AVM, separately. CONCLUSIONS: Our recommendation is that therapeutic-efficacy studies on peripheral vascular malformations should measure at least these core outcome domains.

العلاقة: Horbach, S. E. R., van der Horst, C. M. A. M., Blei, F., van der Vleuten, C. J. M., Frieden, I. J., Richter, G. T., Tan, S. T., Muir, T., Penington, A. J., Boon, L. M. & Spuls, P. I. (2018). Development of an international core outcome set for peripheral vascular malformations: the OVAMA project. BRITISH JOURNAL OF DERMATOLOGY, 178 (2), pp.473-481. https://doi.org/10.1111/bjd.16029Test.; http://hdl.handle.net/11343/283427Test

الإتاحة: https://doi.org/10.1111/bjd.16029Test
http://hdl.handle.net/11343/283427Test

المؤلفون: Horbach, S E R, Lokhorst, M M, Saeed, P, de Pontouraude, Cmfdm, Rothova, Aniki, van der Horst, CMAM

المصدر: Horbach , S E R , Lokhorst , M M , Saeed , P , de Pontouraude , C , Rothova , A & van der Horst , CMAM 2016 , ' Sclerotherapy for low-flow vascular malformations of the head and neck: A systematic review of sclerosing agents ' , Journal of Plastic, Reconstructive & Aesthetic Surgery , vol. 69 , no. 3 , pp. 295-304 . https://doi.org/10.1016/j.bjps.2015.10.045Test

الإتاحة: https://doi.org/10.1016/j.bjps.2015.10.045Test
https://pure.eur.nl/en/publications/115e3b1d-6fca-48f8-831e-a985dc172872Test

المؤلفون: Basart, H, Konig, AM, Bretschneider, JH, Hoekstra, CEL, Oomen, KPQ, Pullens, Bas, Rinkel, RNPM, van Gogh, CDL, van der Horst, CMAM, Hennekam, RC

المصدر: Basart , H , Konig , AM , Bretschneider , JH , Hoekstra , CEL , Oomen , KPQ , Pullens , B , Rinkel , RNPM , van Gogh , CDL , van der Horst , CMAM & Hennekam , RC 2016 , ' Awake Flexible Fiberoptic Laryngoscopy to diagnose glossoptosis in Robin Sequence patients ' , Clinical Otolaryngology , vol. 41 , no. 5 , pp. 467-471 . https://doi.org/10.1111/coa.12552Test

الوصف: BackgroundRobin Sequence (RS) is usually defined as the combination of micrognathia, glossoptosis and upper airway obstruction. No objective criteria to diagnose RS exist. To compare management strategy results, a single RS definition using objective criteria is needed. The most frequently used primary diagnostic tool for glossoptosis is awake Flexible Fiberoptic Laryngoscopy (aFFL). ObjectivesTo determine the reliability of the aFFL videos as an independent diagnostic tool itself, rather than on the complete evaluation of a patient. Design, setting, participantsAll RS individuals from an existing cohort with an available aFFL video were included retrospectively. Thirty age-matched patients without pathologic findings on aFFL were used as controls. aFFL videos were scored by six otolaryngologists as: a. Marked glossoptosis, b. Mild glossoptosis, c. Severity unknown, d. No glossoptosis, e. Insufficient video quality. Videos were anonymised and rated twice, in altered sequences, after a washout period of minimally 2 weeks. Main outcome measuresInter-rater and intrarater agreement. ResultsTwenty-six videos of 16 RS patients and 30 videos of controls were included. Inter-rater agreement was fair in the whole group (: 0.320) and RS group (: 0.226), and fair to moderate in determining presence of glossoptosis (total group : 0.430; RS : 0.302; controls : 0.212). The intrarater agreement for the presence of glossoptosis in RS was moderate (: 0.541). ConclusionsaFFL offers fair to moderate inter-rater agreement, with moderate intrarater agreement, in evaluating glossoptosis in RS. Using aFFL as the single tool in choosing management strategies in RS seems insufficient. There is need for a more reliable, patient friendly diagnostic tool or an internationally accepted aFFL scoring system, to diagnose glossoptosis in RS.

الإتاحة: https://doi.org/10.1111/coa.12552Test
https://pure.eur.nl/en/publications/8506d8a2-316c-4e34-89a2-eb3daad3bc81Test

المؤلفون: Hovius, Steven, Luijsterburg, Teun, Foucher, G, van der Horst, CMAM, Kay, PJ

المساهمون: Hovius, S.E.R.

المصدر: Hovius , S , Luijsterburg , T , Foucher , G , van der Horst , CMAM & Kay , PJ 2002 , Symbrachydactyly . in S E R Hovius (ed.) , The pediatric upper limb - federation of European societies for surgery of the hand . Martin Dunitz , London , pp. 91-101 .

مصطلحات موضوعية: /dk/atira/pure/keywords/researchprograms/AFL001000/EMCMGC025002A, name=EMC MGC-02-50-02-A, /dk/atira/pure/keywords/researchprograms/AFL001000/EMCMUSC015001, name=EMC MUSC-01-50-01

العلاقة: https://pure.eur.nl/en/publications/c864e650-ca75-42fe-9946-9c46912290c6Test; urn:ISBN:184184134X

الإتاحة: https://pure.eur.nl/en/publications/c864e650-ca75-42fe-9946-9c46912290c6Test

المؤلفون: Brolmann, FE, Ubbink, DT, Nelson, EA, Munte, Kai, van der Horst, CMAM, Vermeulen, HG (Hester)

المصدر: Brolmann , FE , Ubbink , DT , Nelson , EA , Munte , K , van der Horst , CMAM & Vermeulen , HG 2012 , ' Evidence-based decisions for local and systemic wound care ' , British Journal of Surgery , vol. 99 , no. 9 , pp. 1172-1183 . https://doi.org/10.1002/bjs.8810Test

مصطلحات موضوعية: /dk/atira/pure/sustainabledevelopmentgoals/good_health_and_well_being, SDG 3 - Good Health and Well-being

الوصف: Background: Decisions on local and systemic wound treatment vary among surgeons and are frequently based on expert opinion. The aim of this meta-review was to compile best available evidence from systematic reviews in order to formulate conclusions to support evidence-based decisions in clinical practice. Methods: All Cochrane systematic reviews (CSRs), published by the Cochrane Wounds and Peripheral Vascular Diseases Groups, and that investigated therapeutic and preventive interventions, were searched in the Cochrane Database up to June 2011. Two investigators independently categorized each intervention into five levels of evidence of effect, based on size and homogeneity, and the effect size of the outcomes. Results: After screening 149 CSRs, 44 relevant reviews were included. These contained 109 evidence-based conclusions: 30 on venous ulcers, 30 on acute wounds, 15 on pressure ulcers, 14 on diabetic ulcers, 12 on arterial ulcers and eight on miscellaneous chronic wounds. Strong conclusions could be drawn regarding the effectiveness of: therapeutic ultrasonography, mattresses, cleansing methods, closure of surgical wounds, honey, antibiotic prophylaxis, compression, lidocaineprilocaine cream, skin grafting, antiseptics, pentoxifylline, debridement, hyperbaric oxygen therapy, granulocyte colony-stimulating factors, prostanoids and spinal cord stimulation. Conclusion: For some wound care interventions, robust evidence exists upon which clinical decisions should be based. Copyright (c) 2012 British Journal of Surgery Society Ltd. Published by John Wiley & Sons, Ltd.

الإتاحة: https://doi.org/10.1002/bjs.8810Test
https://pure.eur.nl/en/publications/21f26538-6160-44f3-b2da-cf4f765b022fTest
http://hdl.handle.net/1765/55089Test

المؤلفون: Michaloglou, C., Vredeveld, L. C. W., Soengas, Maria S., Denoyelle, C., Kuilman, T., van der Horst, Cmam, Majoor, D. M., Shay, J. W., Mooi, W. J., Peeper, D. S.

المساهمون: Univ Michigan, Dept Dermatol, Ann Arbor, MI 48109 USA, Univ Michigan, Ctr Comprehens Canc, Ann Arbor, MI 48109 USA, Netherlands Canc Inst, Div Mol Genet, NL-1066 CX Amsterdam, Netherlands, Netherlands Canc Inst, Div Pathol, NL-1066 CX Amsterdam, Netherlands, Univ Amsterdam, Acad Med Ctr, Dept Plast Reconstruct & Hand Surg, NL-1100 AZ Amsterdam, Netherlands, Univ Texas, SW Med Ctr, Dept Biol, Dallas, TX 75390 USA, Univ Texas, SW Med Ctr, Harold Simmons Canc Ctr, Dallas, TX 75390 USA, Free Univ Amsterdam, Med Ctr, Dept Pathol, NL-1081 HV Amsterdam, Netherlands, wj.mooi@vumc.nl, d.peeper@nki.nl

المصدر: Nature

مصطلحات موضوعية: Science

الوصف: Most normal mammalian cells have a finite lifespan(1), thought to constitute a protective mechanism against unlimited proliferation(2-4). This phenomenon, called senescence, is driven by telomere attrition, which triggers the induction of tumour suppressors including p16(INK4a) (ref. 5). In cultured cells, senescence can be elicited prematurely by oncogenes(6); however, whether such oncogene-induced senescence represents a physiological process has long been debated. Human naevi ( moles) are benign tumours of melanocytes that frequently harbour oncogenic mutations ( predominantly V600E, where valine is substituted for glutamic acid) in BRAF(7), a protein kinase and downstream effector of Ras. Nonetheless, naevi typically remain in a growth-arrested state for decades and only rarely progress into malignancy (melanoma)(8-10). This raises the question of whether naevi undergo BRAF(V600E)- induced senescence. Here we show that sustained BRAF(V600E) expression in human melanocytes induces cell cycle arrest, which is accompanied by the induction of both p16(INK4a) and senescence- associated acidic beta-galactosidase (SA-beta-Gal) activity, a commonly used senescence marker. Validating these results in vivo, congenital naevi are invariably positive for SA-beta-Gal, demonstrating the presence of this classical senescence-associated marker in a largely growth-arrested, neoplastic human lesion. In growth-arrested melanocytes, both in vitro and in situ, we observed a marked mosaic induction of p16(INK4a), suggesting that factors other than p16(INK4a) contribute to protection against BRAF(V600E)- driven proliferation. Naevi do not appear to suffer from telomere attrition, arguing in favour of an active oncogene-driven senescence process, rather than a loss of replicative potential. Thus, both in vitro and in vivo, BRAF(V600E)-expressing melanocytes display classical hallmarks of senescence, suggesting that oncogene-induced senescence represents a genuine protective physiological process. ; Peer Reviewed ...

وصف الملف: 592082 bytes; 2489 bytes; application/octet-stream; text/plain; application/pdf

العلاقة: Michaloglou, C; Vredeveld, LCW; Soengas, MS; Denoyelle, C; Kuilman, T; van der Horst, CMAM; Majoor, DM; Shay, JW; Mooi, WJ; Peeper, DS. (2005) "BRAF(E600)-associated senescence-like cell cycle arrest of human naevi." Nature 436(7051): 720-724.; https://hdl.handle.net/2027.42/62941Test; http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=retrieve&db=pubmed&list_uids=16079850&dopt=citationTest; http://dx.doi.org/10.1038/nature03890Test; Nature

الإتاحة: https://doi.org/10.1038/nature03890Test
https://hdl.handle.net/2027.42/62941Test
http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=retrieve&db=pubmed&list_uids=16079850&dopt=citationTest