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1. The value‐based healthcare approach to haemophilia: Development of outcome measures for the evaluation of care of people with haemophilia

Author

Cortesi, P, Fornari, C, Conti, S, Pollio, B, Boccalandro, E, Buzzi, A, Carulli, C, Coppola, A, De Cristofaro, R, Di Minno, M, Dolan, G, Grazzi, E, Fornari, A, Gualtierotti, R, Hermans, C, Jiménez-Juste, V, Kenet, G, Lupi, A, Martinoli, C, Mansueto, M, Nicolò, G, Tagliaferri, A, Gringeri, A, Molinari, A, Mantovani, L, Castaman, G, Cortesi, PA, Di Minno, MND, Grazzi, EF, Mansueto, MF, Molinari, AC, Mantovani, LG, Cortesi, P, Fornari, C, Conti, S, Pollio, B, Boccalandro, E, Buzzi, A, Carulli, C, Coppola, A, De Cristofaro, R, Di Minno, M, Dolan, G, Grazzi, E, Fornari, A, Gualtierotti, R, Hermans, C, Jiménez-Juste, V, Kenet, G, Lupi, A, Martinoli, C, Mansueto, M, Nicolò, G, Tagliaferri, A, Gringeri, A, Molinari, A, Mantovani, L, Castaman, G, Cortesi, PA, Di Minno, MND, Grazzi, EF, Mansueto, MF, Molinari, AC, and Mantovani, LG

Abstract

Introduction: Considering the advances in haemophilia management and treatment observed in the last decades, a new set of value-based outcome indicators is needed to assess the quality of care and the impact of these medical innovations. Aim: The Value-Based Healthcare in Haemophilia project aimed to define a set of clinical outcome indicators (COIs) and patient-reported outcome indicators (PROIs) to assess quality of care in haemophilia in high-income countries with a value-based approach to inform and guide the decision-making process. Methods: A Value-based healthcare approach based on the available literature, current guidelines and the involvement of a multidisciplinary group of experts was applied to generate a set of indicators to assess the quality of care of haemophilia. Results: A final list of three COIs and five PROIs was created and validated. The identified COIs focus on two domains: musculoskeletal health and function, and safety. The identified PROIs cover five domains: bleeding frequency, pain, mobility and physical activities, Health-Related Quality of Life and satisfaction. Finally, two composite outcomes, one based on COIs, and one based on PROIs, were proposed as synthetic outcome indicators of quality of care. Conclusion: The presented standard set of health outcome indicators provides the basis for harmonised longitudinal and cross-sectional monitoring and comparison. The implementation of this value-based approach would enable a more robust assessment of quality of care in haemophilia, within a framework of continuous treatment improvements with potential added value for patients. Moreover, proposed COIs and PROIs should be reviewed and updated routinely.

Published
2024

2. PB0654 Combined Point of Care Tools Improve Treatment Adherence and Health-Related Quality of Life in Patients with Hemophilia Under Regular Prophylaxis: An Observational Mulicenter Prospective Study

Author

Napolitano, M., primary, Di Minno, M., additional, Calcaterra, I., additional, Marino, R., additional, Malcangi, G., additional, Mattana, M., additional, Raso, S., additional, Giffrida, G., additional, Mansueto, M., additional, Scaturro, D., additional, Mauro, G., additional, and Siragusa, S., additional

Published
2023
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3. PB0124 Treatment with PCSK9 Inhibitors in Patients with Familial Hypercholesterolemia Lowers Plasma Levels of Platelet Activating Factor and its Precursors: A Combined Metabolomic and Lipidomic Approach

Author

Calcaterra, I., primary, Di Minno, A., additional, Orsini, R., additional, Chiesa, M., additional, Cavalca, V., additional, Tripaldella, M., additional, Anesi, A., additional, Fiorelli, S., additional, Eligini, S., additional, Palermo, V., additional, Donnarumma, S., additional, Tufano, A., additional, Iannuzzo, G., additional, Colombo, G., additional, Tremoli, E., additional, Porro, B., additional, and Di Minno, M., additional

Published
2023
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7. Promoting physical activity in people with haemophilia: the MEMO (Movement for persons with haEMOphilia) expert consensus project

Author

Biasoli C., Baldacci E., Coppola A., De Cristofaro R., Di Minno M. N. D., Lassandro G., Linari S., Mancuso M. E., Napolitano M., Pasta G., Rocino A., Biasoli, C., Baldacci, E., Coppola, A., De Cristofaro, R., Di Minno, M. N. D., Lassandro, G., Linari, S., Mancuso, M. E., Napolitano, M., Pasta, G., and Rocino, A.

Subjects
recommendation, haemophilia, physical activity, sports
Abstract

Regular physical activity can increase joint stability and function, reduce the risk of injury, and improve quality of life of people with haemophilia (PwH). However, a recent review of the literature shows that appropriate physical activity and sport are not always promoted enough in the overall management of PwH. A group of Italian experts in haemophilia care undertook a consensus procedure to provide practical guidance on when and how to recommend physical exercise programmes to PwH in clinical practice. Three main topics were identified -haemophilia and its impact on movement, physical activity recommendations for PwH, and choice and management of sports activity in PwH- and ten statements were formulated. A modified Delphi approach was used to reach a consensus. The group also created practical tools proposing different physical activities and frequencies for different age groups, the Movement Pyramids, to be shared and discussed with patients and caregivers. In conclusion, in the opinion of the working group, physical activity can be considered as a low-price intervention that can prevent/reduce the occurrence of chronic diseases and should be further encouraged in PwH to obtain multiple physical and psychological benefits. Future research should include prospective studies focusing on participation in sports, specific risk exposure and clinical outcomes.

Published
2022

8. Comparative analysis of the pivotal studies of extended half-life recombinant FVIII products for treatment of haemophilia A

Author

Mannucci, P, Cortesi, P, Di Minno, M, Sano, M, Mantovani, L, Di Minno, G, Mannucci P. M., Cortesi P. A., Di Minno M. N. D., Sano M., Mantovani L. G., Di Minno G., Mannucci, P, Cortesi, P, Di Minno, M, Sano, M, Mantovani, L, Di Minno, G, Mannucci P. M., Cortesi P. A., Di Minno M. N. D., Sano M., Mantovani L. G., and Di Minno G.

Abstract

The need to reduce the burden of injections, and improve adherence and clinical outcomes in haemophilia A led to the development of recombinant FVIII products endowed with an extended plasma half-life (EHL-rFVIII) in comparison with standard half-life products (SHL-rFVIII). Lack of head-to-head studies makes difficult to grasp the relative value of each treatment option. We conducted a combined evaluation of the individual pivotal trials in order to assess between-product differences regarding the reported efficacy results and FVIII consumption. We evaluated 4 EHL-rFVIII products available to treat patients with haemophilia A without inhibitors and also a SHL-rFVIII as a comparator. In the frame of these clinical studies, all the EHL-rFVIII products showed a decrease in the injection burden coupled with good clinical efficacy, even though there were between-product differences in terms of reduction in injection frequencies. Further, between-product differences in terms of weekly/yearly consumption of rFVIII expressed in IU/Kg were identified, suggesting a different economic impact for the different EHL-rFVIII products in the context of comparable clinical efficacy. The present findings based upon the review of pivotal studies done in the frame of a highly selected clinical scenario should be integrated with real-life data.

Published
2021

14. Sex-related characteristics of cerebral vein thrombosis: A secondary analysis of a multicenter international cohort study

Author

Porceddu, E, Rezoagli, E, Poli, D, Magliocca, A, Scoditti, U, Di Minno, M, De Stefano, V, Siragusa, S, Ageno, W, Dentali, F, Porceddu E., Rezoagli E., Poli D., Magliocca A., Scoditti U., Di Minno M. N. D., De Stefano V., Siragusa S., Ageno W., Dentali F., Porceddu, E, Rezoagli, E, Poli, D, Magliocca, A, Scoditti, U, Di Minno, M, De Stefano, V, Siragusa, S, Ageno, W, Dentali, F, Porceddu E., Rezoagli E., Poli D., Magliocca A., Scoditti U., Di Minno M. N. D., De Stefano V., Siragusa S., Ageno W., and Dentali F.

Published
2020

15. Diagnostic accuracy of D-Dimer testing for recurrent venous thromboembolism: A systematic review with meta-analysis.: VTE recurrence and D-dimer

Author

Di Minno M. N. D., Calcaterra I., Papa A., Lupoli R., Di Minno A., Maniscalco M., Ambrosino P., Di Minno, M. N. D., Calcaterra, I., Papa, A., Lupoli, R., Di Minno, A., Maniscalco, M., and Ambrosino, P.

Subjects
Clinical prediction rule, Disability, Risk Factor, Pulmonary embolism, Rehabilitation, Anticoagulant, Venous Thromboembolism, Chronic disease, Anticoagulation, Deep vein thrombosi, Recurrence, Outcome, Fibrin Fibrinogen Degradation Product, Human
Abstract

Objective: Venous thromboembolism (VTE) recurrence is a major concern after a first symptomatic episode, potentially impacting survival and healthcare needs in community, hospital and rehabilitation settings. We evaluated the association of D-Dimer positivity after oral anticoagulant therapy (OAT) discontinuation with VTE recurrence. Methods: PubMed, Web of Science, Scopus and EMBASE databases were systematically searched. Differences were expressed as Odds Ratio (OR) with 95% confidence intervals (95%CI). Pooled sensitivity, specificity, positive (PLR) and negative likelihood ratio (NLR), and summary ROC (sROC) curve were calculated. Results: Twenty-six articles on 10,725 VTE patients showed that the absolute risk of recurrence was 16.1% (95%CI: 13.2%-19.5%) among 4,049 patients with a positive D-Dimer and 7.4% (95%CI: 6.0%-9.0%) in 6,676 controls (OR: 2.1, 95%CI: 1.7-2.8, P

Published
2021

16. Pain assessment and management in Italian Haemophilia Centres

Author

Di Minno M. N. D., Santoro C., Corcione A., Di Minno G., Martinelli M., Mancuso M. E., Acone B., Molinari A. C., Passeri E. V., Rocino A., Santoro R. C., Tagliaferri A., Mattia C., Di Minno, M. N. D., Santoro, C., Corcione, A., Di Minno, G., Martinelli, M., Mancuso, M. E., Acone, B., Molinari, A. C., Passeri, E. V., Rocino, A., Santoro, R. C., Tagliaferri, A., and Mattia, C.

Subjects
Blood coagulation disorder, Haemophilia, Pain perception, Surveys, Pain management
Abstract

Background - Although the widespread use of factor VIII/IX replacement therapy has significantly reduced the severity of arthropathy in persons with haemophilia (PWH), some develop degenerative joint changes, associated with significant pain. The aim of this survey was to investigate the management and perception of pain among Italian physicians who treat PWH. Materials and methods - Between September and October 2017, a questionnaire was distributed to 35 Italian haemophilia treatment centres (60 physicians). Results - Fifty-three haemophilia specialists completed the survey. We found that there was good agreement (98.1%) on the need to investigate pain at each clinical visit, but there was heterogeneity in the opinions of haemophilia specialists with regards to the availability of validated guidelines (35.8%) and whether pain specialists should be a part of the comprehensive care team in daily clinical practice (58.5%). Haemophilia specialists also agreed pain should be evaluated using a rating scale validated in PWH (88.7%). Pain was mainly managed by the haemophilia specialists themselves, supported by a physiatrist and physiotherapist, while a pain specialist was only involved in 26.4% of cases. The combination of paracetamol with tramadol or codeine was the most common first-line treatment, while cyclo-oxygenase-2 inhibitors, non-steroidal anti-inflammatory drugs, and opioids were less commonly used. Discussion - There are some unmet needs in Italy regarding pain management for PWH and the management of pain in these patients by haemophilia specialists. There is a lack of evidence-based guidelines for these specialists to use, as well as a reluctance to involve pain specialists. The lack of spontaneous reporting of pain by PWH, despite using pain relief, highlights the need for clinicians to actively ask patients about any pain they may be experiencing.

Published
2021

22. Real-world clinical and psychosocial outcomes among people with mild or moderate haemophilia A treated on-demand in the Italian CHESS II cohort: a real-world data analysis

Author

Castaman Giancarlo, Mancuso Maria Elisa, Di Minno Matteo Nicola Dario, Sannino Luigi, Tempre Rosaria, Bendinelli Sara, Blenkiron Tom, Burke Tom, and Grazzi Enrico Ferri

Subjects
haemophilia a, annual bleeding rate, joint arthropathy, pain, patient-reported outcomes, health-related quality of life, psychosocial burden, Diseases of the blood and blood-forming organs, RC633-647.5
Abstract

The burden of severe haemophilia A (HA) has been studied extensively owing to the higher bleeding frequency and associated treatment requirements, leaving a clear unmet need for research focused on the burden of mild and moderate HA.

Published
2024
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36. EVOLOCUMAB IS EFFECTIVE AND SAFE TO TREAT HYPERCHOLESTEROLEMIA IN A PATIENT WITH STATIN-INDUCED NECROTIZING MYOPATHY

Author

Calcaterra I, TRIPALDELLA, MARIA, Gentile m, Iannuzzo G, Forte F, BUONAIUTO, ALESSIO, Rubba PO, Di Minno M. N. D, Calcaterra I, Tripaldella M, Gentile M, Iannuzzo G, Forte F, Buonaiuto A, Rubba PO, Di Minno M.N.D, Calcaterra, I, Tripaldella, Maria, Gentile, M, Iannuzzo, G, Forte, F, Buonaiuto, Alessio, Rubba, Po, and Di Minno M. N., D

Subjects
evolocumab , hypercholesterolemia,myopaty
Published
2019

37. SMALL DENSE LDL IN RELATION TO CHANGES IN OXIDATION MARKERS AND VASCULAR REACTIVITYIN PATIENTS WITH HYPERCHOLESTEROLEMIA TREATED WITH EVOLOCUMAB: A PROSPECTIVE COHORT STUDY

Author

Calcaterra I, Tripaldella M, Gentile M, Iannuzzo G, Di Taranto MD, Di Minno A., Rubba PO, Di Minno M. N. D, Calcaterra I, Tripaldella M, Gentile M, Iannuzzo G, Di Taranto MD, Di Minno A., Rubba PO, Di Minno M.N.D, Calcaterra, I, Tripaldella, M, Gentile, M, Iannuzzo, G, DI TARANTO, MARIA DONATA, Di Minno, A., Rubba, Po, and Di Minno M. N., D

Published
2019

38. Biomarkers of subclinical atherosclerosis in patients with psoriatic arthritis

Author

Peluso R., Caso F., TASSO, MARTA, Sabbatino V., Lupoli R., Di Minno M. N. D., Ursini F., Costa L., Scarpa R., Scalera A., Di Minno A., Ambrosino P., Tarantino G., Di Minno G., Iervolino S., Pappone N., Peluso R., Caso F., Tasso M., Sabbatino V., Lupoli R., DiMinno M.N.D., Ursini F., Costa L., Scarpa R., Scalera A., Di Minno A., Ambrosino P., Tarantino G., Di Minno G., Iervolino S., Pappone N., Peluso, R., Caso, F., Tasso, Marta, Sabbatino, V., Lupoli, R., Di Minno, M. N. D., Ursini, F., Costa, L., Scarpa, R., Scalera, A., Di Minno, A., Ambrosino, P., Tarantino, G., Di Minno, G., Iervolino, S., and Pappone, N.

Subjects
Lipid profile, Serum uric acid, primary and secondary hemostasis, Primary and secondary hemostasi, Insulin resistance, Review, Complement C3, Psoriatic disease
Abstract

Background: Psoriatic arthritis (PsA) is a chronic immune-mediated disease. It is associated with an increase in cardiovascular risk factors (obesity, hypertension, diabetes, and dyslipidemia), giving a higher risk of major adverse cardiovascular events. Patients with PsA have an increased incidence of subclinical atherosclerosis and endothelial dysfunction. The aim of this study is to perform a review of the biomarkers of subclinical atherosclerosis in patients with PsA. Methods: A search was performed in the electronic databases (PubMed, Web of Science, Scopus, and Embase) up until July 2017. Studies were considered if they included data on biomarkers of subclinical atherosclerosis in PsA, and each article was then reviewed for quality and clinical relevance. After completing the literature search, all screened literature was summarized and discussed in our study group (CaRRDs study group). Results: The initial search produced 532 abstracts, which were limited to 258 potentially relevant articles by preliminary review of the titles and by excluding review articles and case reports (n=274). A further 102 articles were deemed ineligible after examining the abstracts. Full texts of the remaining 156 articles were retrieved. Most articles were excluded because they were not relevant to the biomarkers of subclinical atherosclerosis in psoriasis and/or PsA. In the end, 54 articles were deemed eligible for this review. Conclusion: Patients with PsA showed more severe atherosclerotic disease compared with patients with only psoriasis. This may have been due to the higher systemic inflammatory burden from the combination of both diseases. In patients with PsA some molecules may be considered as markers of atherosclerotic disease, and their detection may be a prognostic marker, in addition to imaging procedures, for the development of atherosclerotic disease, and could be suitable for the management of patients with PsA.

Published
2019

39. Consensus statements on vaccination in patients with haemophilia—Results from the Italian haemophilia and vaccinations (HEVA) project

Author

Santagostino E., Riva A., Cesaro S., Esposito S., Matino D., Mazzucchelli R. I., Molinari, Angelo Claudio, Mura R., Notarangelo L. D., Tagliaferri A., Di Minno G., Clerici M., Ambaglio C., Brigida Aru A., Baldacci E., Barillari G., Basso M., Bernasconi S., Bertamino M., Bertoni E., Biasoli C., Federica Biguzzi E., Bonetti E., Borchiellini A., Bulgarelli S., Cabibbo S., Cantori I., Castaman G., Castiglia P., Coluccia A., Coppetelli U., Coppola A., Cultrera D., De Candia E., Delios G., Di Gennaro L., Di Gregorio P., Di Minno M., Dragani A., Pietro Ettorre C., Franchini M., Galli M., Gallo G., Giordano P., Giuffrida G., Iannaccaro P., Lassandro G., Lazzareschi I., Linari S., Luciani M., Macchi S., Malcangi G., Malizia R., Marietta M., Marino R., Massoud M., Gabriella Mazzucconi M., Milan M., Morfini M., Napolitano M., Pasca S., Pedrazzi P., Peyvandi F. A., Piscitelli L., Pollio B., Preti P., Quintavalle G., Radossi P., Raso S., Ricca I., Rocino A., Santoro C., Carlotta Santoro R., Sarolo L., Schiavoni M., Schiavulli M., Sciancalepore P., Luisa Serino M., Mario Siragusa S., Sottilotta G., Svahn J., Valdre L., Cristina Vedovati M., Zanon E., Santagostino, E., Riva, A., Cesaro, S., Esposito, S., Matino, D., Mazzucchelli, R. I., Molinari, Angelo Claudio, Mura, R., Notarangelo, L. D., Tagliaferri, A., Di Minno, G., Clerici, M., Ambaglio, C., Brigida Aru, A., Baldacci, E., Barillari, G., Basso, M., Bernasconi, S., Bertamino, M., Bertoni, E., Biasoli, C., Federica Biguzzi, E., Bonetti, E., Borchiellini, A., Bulgarelli, S., Cabibbo, S., Cantori, I., Castaman, G., Castiglia, P., Coluccia, A., Coppetelli, U., Coppola, A., Cultrera, D., De Candia, E., Delios, G., Di Gennaro, L., Di Gregorio, P., Di Minno, M., Dragani, A., Pietro Ettorre, C., Franchini, M., Galli, M., Gallo, G., Giordano, P., Giuffrida, G., Iannaccaro, P., Lassandro, G., Lazzareschi, I., Linari, S., Luciani, M., Macchi, S., Malcangi, G., Malizia, R., Marietta, M., Marino, R., Massoud, M., Gabriella Mazzucconi, M., Milan, M., Morfini, M., Napolitano, M., Pasca, S., Pedrazzi, P., Peyvandi, F. A., Piscitelli, L., Pollio, B., Preti, P., Quintavalle, G., Radossi, P., Raso, S., Ricca, I., Rocino, A., Santoro, C., Carlotta Santoro, R., Sarolo, L., Schiavoni, M., Schiavulli, M., Sciancalepore, P., Luisa Serino, M., Mario Siragusa, S., Sottilotta, G., Svahn, J., Valdre, L., Cristina Vedovati, M., and Zanon, E.

Subjects
Adult, medicine.medical_specialty, Consensus, Delphi Technique, Vaccination schedule, Delphi method, haemophilia, 030204 cardiovascular system & hematology, Hemophilia A, Haemophilia, immunization, Hemophilia B, bleeding disorder, factor VIII inhibitor, vaccination, Child, Evidence-Based Medicine, Humans, Italy, Vaccination, 03 medical and health sciences, 0302 clinical medicine, Vaccine administration, Medicine, In patient, Clinical Haemophilia, Genetics (clinical), business.industry, Original Articles, Hematology, General Medicine, Evidence-based medicine, medicine.disease, Settore MED/38 - PEDIATRIA GENERALE E SPECIALISTICA, Immunization, Family medicine, Original Article, business, 030215 immunology
Abstract

Vaccination against communicable diseases is crucial for disease prevention, but this practice poses challenges to healthcare professionals in patients with haemophilia. Poor knowledge of the vaccination requirements for these patients and safety concerns often result in vaccination delay or avoidance. In order to address this issue, a panel of 11 Italian haemophilia and immunization experts conducted a Delphi consensus process to identify the main concerns regarding the safe use of vaccines in patients with haemophilia. The consensus was based on a literature search of the available evidence, which was used by the experts to design 27 consensus statements. A group of clinicians then rated these statements using the 5‐point Likert‐type scale (1 = strongly disagree; 5 = strongly agree). The main issues identified by the expert panel included vaccination schedule for haemophilic patients; protocol and optimal route of vaccine administration; vaccination of haemophilic patients with antibodies inhibiting coagulation factor VIII (inhibitors); and vaccination and risk of inhibitor development. This manuscript discusses these controversial areas in detail supported by the available literature evidence and provides evidence‐ and consensus‐based recommendations. Overall, participants agreed on most statements, except those addressing the potential role of vaccination in inhibitor formation. Participants agreed that patients with haemophilia should receive vaccinations according to the institutional schedule for individuals without bleeding disorders; however, vaccination of patients with haemophilia requires comprehensive planning, taking into account disease severity, type and route of vaccination, and bleeding risk. Data also suggest vaccination timing does not need to take into consideration when the patient received factor VIII replacement.

Published
2019

47. Obesity in the global haemophilia population: prevalence, implications and expert opinions for weight management

Author

Wilding, J., Zourikian, N., Di Minno, M., Khair, K., Marquardt, N., Benson, G., Ozelo, M., Hermans, C., Wilding, J., Zourikian, N., Di Minno, M., Khair, K., Marquardt, N., Benson, G., Ozelo, M., and Hermans, C.

Subjects
Haemophilia, obesity, weight management, Endocrinology, Diabetes and Metabolism, prevalence, Public Health, Environmental and Occupational Health
Published
2018

48. Consensus statements on vaccination in patients with haemophilia—Results from the Italian haemophilia and vaccinations (HEVA) project

Author

Santagostino, E., Riva, A., Cesaro, S., Esposito, S., Matino, D., Mazzucchelli, R. I., Molinari, A. C., Mura, R., Notarangelo, L. D., Tagliaferri, A., Di Minno, G., Clerici, M., Ambaglio, C., Brigida Aru, A., Baldacci, E., Barillari, G., Basso, M., Bernasconi, S., Bertamino, M., Bertoni, E., Biasoli, C., Federica Biguzzi, E., Bonetti, E., Borchiellini, A., Bulgarelli, S., Cabibbo, S., Cantori, I., Castaman, G., Castiglia, P., Coluccia, A., Coppetelli, U., Coppola, A., Cultrera, D., De Candia, Erica, Delios, G., Di Gennaro, L., Di Gregorio, P., Di Minno, M., Dragani, A., Pietro Ettorre, C., Franchini, M., Galli, M., Gallo, G., Giordano, P., Giuffrida, G., Iannaccaro, P., Lassandro, G., Lazzareschi, Ilaria, Linari, S., Luciani, M., Macchi, S., Malcangi, G., Malizia, R., Marietta, M., Marino, R., Massoud, M., Gabriella Mazzucconi, M., Milan, M., Morfini, M., Napolitano, M., Pasca, S., Pedrazzi, P., Peyvandi, F. A., Piscitelli, L., Pollio, B., Preti, P., Quintavalle, G., Radossi, P., Raso, S., Ricca, I., Rocino, A., Santoro, C., Carlotta Santoro, R., Sarolo, L., Schiavoni, M., Schiavulli, M., Sciancalepore, P., Luisa Serino, M., Mario Siragusa, S., Sottilotta, G., Svahn, J., Valdre, L., Cristina Vedovati, M., Zanon, E., De Candia E. (ORCID:0000-0003-0942-2819), Lazzareschi I. (ORCID:0000-0001-7221-2983), Santagostino, E., Riva, A., Cesaro, S., Esposito, S., Matino, D., Mazzucchelli, R. I., Molinari, A. C., Mura, R., Notarangelo, L. D., Tagliaferri, A., Di Minno, G., Clerici, M., Ambaglio, C., Brigida Aru, A., Baldacci, E., Barillari, G., Basso, M., Bernasconi, S., Bertamino, M., Bertoni, E., Biasoli, C., Federica Biguzzi, E., Bonetti, E., Borchiellini, A., Bulgarelli, S., Cabibbo, S., Cantori, I., Castaman, G., Castiglia, P., Coluccia, A., Coppetelli, U., Coppola, A., Cultrera, D., De Candia, Erica, Delios, G., Di Gennaro, L., Di Gregorio, P., Di Minno, M., Dragani, A., Pietro Ettorre, C., Franchini, M., Galli, M., Gallo, G., Giordano, P., Giuffrida, G., Iannaccaro, P., Lassandro, G., Lazzareschi, Ilaria, Linari, S., Luciani, M., Macchi, S., Malcangi, G., Malizia, R., Marietta, M., Marino, R., Massoud, M., Gabriella Mazzucconi, M., Milan, M., Morfini, M., Napolitano, M., Pasca, S., Pedrazzi, P., Peyvandi, F. A., Piscitelli, L., Pollio, B., Preti, P., Quintavalle, G., Radossi, P., Raso, S., Ricca, I., Rocino, A., Santoro, C., Carlotta Santoro, R., Sarolo, L., Schiavoni, M., Schiavulli, M., Sciancalepore, P., Luisa Serino, M., Mario Siragusa, S., Sottilotta, G., Svahn, J., Valdre, L., Cristina Vedovati, M., Zanon, E., De Candia E. (ORCID:0000-0003-0942-2819), and Lazzareschi I. (ORCID:0000-0001-7221-2983)

Abstract

Vaccination against communicable diseases is crucial for disease prevention, but this practice poses challenges to healthcare professionals in patients with haemophilia. Poor knowledge of the vaccination requirements for these patients and safety concerns often result in vaccination delay or avoidance. In order to address this issue, a panel of 11 Italian haemophilia and immunization experts conducted a Delphi consensus process to identify the main concerns regarding the safe use of vaccines in patients with haemophilia. The consensus was based on a literature search of the available evidence, which was used by the experts to design 27 consensus statements. A group of clinicians then rated these statements using the 5-point Likert-type scale (1 = strongly disagree; 5 = strongly agree). The main issues identified by the expert panel included vaccination schedule for haemophilic patients; protocol and optimal route of vaccine administration; vaccination of haemophilic patients with antibodies inhibiting coagulation factor VIII (inhibitors); and vaccination and risk of inhibitor development. This manuscript discusses these controversial areas in detail supported by the available literature evidence and provides evidence- and consensus-based recommendations. Overall, participants agreed on most statements, except those addressing the potential role of vaccination in inhibitor formation. Participants agreed that patients with haemophilia should receive vaccinations according to the institutional schedule for individuals without bleeding disorders; however, vaccination of patients with haemophilia requires comprehensive planning, taking into account disease severity, type and route of vaccination, and bleeding risk. Data also suggest vaccination timing does not need to take into consideration when the patient received factor VIII replacement.

Published
2019

49. BHPR research: qualitative1. Complex reasoning determines patients' perception of outcome following foot surgery in rheumatoid arhtritis

Author

Backhouse, Michael R., Vinall, Karen A., Redmond, Anthony, Helliwell, Philip, Keenan, Anne-Maree, Dale, Rebecca M., Thomas, Amanda, Aronson, Diane, Turner-Cobb, Julie, Sengupta, Raj, France, Brisa, Hill, Ingrid, Flurey, Caroline A., Morris, Marianne, Pollock, Jon, Hughes, Rod, Richards, Pam, Hewlett, Sarah, Ryan, Sarah, Lille, Kate, Adams, Jo, Haq, Inam, McArthur, Margaret, Goodacre, Lynne, Birt, Linda, Wilson, Oonagh, Kirwan, John, Dures, Emma, Quest, Enid, Rajak, Rizwan, Thomas, Tasmin, Lawson, Tom, Petford, Sharon, Hale, Elizabeth, Kitas, George D., Gooberman-Hill, Rachael, Jinks, Clare, Dziedzic, Krysia, Bouças, Sofia Barbosa, Hislop, Kelly, Rhodes, Carol, Ali, Fizzah, Ong, Bie Nio, White, Derrick, Hensor, Elizabeth, Ferguson, Anna M., Douiri, Abdel, Scott, David L., Lempp, Heidi, Halls, Serena, Law, Rebecca-Jane, Jones, Jeremy, Markland, David, Maddison, Peter, Thom, Jeanette, Thom, Jeanette M., Breslin, Anne, Kraus, Alexandra, Gordhan, Chandrika, Dennis, Sean, Connor, John, Chowdhary, Bhavani, Lottay, Neena, Juneja, Parmjit, Bacon, Paul A., Isaacs, David, Jack, James, Keller, Majella, Tibble, Jeremy, Hammond, Alison, Gill, Rachel, Tyson, Sarah, Tennant, Alan, Nordenskiold, Ulla, Pease, Emily E., Pease, Colin T., Trehane, Anne, Rahmeh, Fouz, Cornell, Patricia, Westlake, Sarah L., Rose, Katy, Alber, Catherine Fouad, Watson, Liam, Stratton, Richard, Lazarus, Mark, McNeilly, Natasha E., Waterfield, Jackie, Hurley, Mike, Greenwood, James, Clayton, Ann M., Lynch, Michael, Clewes, Adrian, Dawson, Julie, Abernethy, Veronica, Griffiths, Ann E., Chamberlain, Victoria A., McLoughlin, YokeMei, Campbell, Sophie, Hayes, Janita, Moffat, Claire, McKenna, Frank, Shah, Preeti, Williams, Ann, Rhys-Dillon, Ceril, Goodfellow, Rhian, Martin, James C., Bari, Farhan, Hughes, Gwenan, Thomas, Eleri, Baker, Sarah, Collins, David, Price, Elizabeth, Williamson, Lyn, Dunkley, Lisa, Youll, Matthew J., Rodziewicz, Mia, Reynolds, John A., Berry, Jacqueline, Pavey, Chee, Hyrich, Kimme, Gorodkin, Rachel, Wilkinson, Kate, Bruce, Ian, Barton, Anne, Silman, Alan, Ho, Pauline, Cornell, Tricia, Richards, Selwyn, Holmes, A., Parker, S., Smith, H., Briggs, N., Arthanari, S., Nisar, M., Thwaites, Catharine, Kamath, Sanjeet, Price, Shyra, Robinson, Sandra M., Walker, David, Coop, Hazel, Al-Allaf, Wahab, Charleton, Rebecca C., Griffiths, Bridget, Edwards, Elizabeth A., Partlett, Rosamund, Martin, Keith, Tarzi, Mike, Panthakalam, Sathianathan, Freeman, Tanya, Ainley, Louise, Turner, Michael, Hughes, Lyndsay, Russell, Bridget, Jenkins, Suzanne, Done, John, Young, Adam, Jones, Tadeusz, Gaywood, Ian C., Pande, Ira, Pradère, Marie-Josèphe, Bhaduri, Mahua, Smith, Angela, Cook, Haley, Abraham, Sonya, Ngcozana, Tanaka, Denton, Christopher P., Parker, Louise, Black, Carol M., Ong, Voon, Thompson, Nicola, White, Catherine, Duddy, Martin, Jobanputra, Paresh, Bacon, Pauline, Smith, Jacqueline, Richardson, Ann, Giancola, Giorgio, Soh, Vicky, Spencer, Simon, Greenhalgh, Ann, Hanson, Mark, De Lord, Denise, Lloyd, Mark, Wong, Henna, Wren, Damian, Grover, Bob, Hall, John, Neville, Cai, Alton, Peter, Kelly, Stephen, Bombardieri, Michele, Humby, Fran, Ng, Nora, Di Cicco, Maria, Hands, Rebecca, Epis, Oscar, Filer, Andrew, Buckley, Christopher, McInnes, Iain, Taylor, Peter, Pitzalis, Costantino, Freeston, Jane, Conaghan, Philip, Grainger, Andrew, O'Connor, Philip J., Evans, Rob, Emery, Paul, Hodgson, Richard, Fleischmann, Roy, Han, Chenglong, van der Heijde, Desiree, Xu, Weichun, Hsia, Elizabeth, Kavanaugh, Arthur, Gladman, Dafna, Chattopadhyay, Chandrabhusan, Beutler, Anna, Zayat, Ahmed S., Ellegard, Karen, Terslev, Lene, Wakefield, Richard J., Ciurtin, Coziana, Leandro, Maria, Dey, Dzifa, Nandagudi, Anupama, Giles, Ian, Shipley, Mike, Morris, Vanessa, Ioannou, John, Ehrenstein, Michael, Sen, Debajit, Chan, Marian, Quinlan, Tim M., Brophy, Richard, Mewar, Devesh, Patel, Dipti, Wilby, M. J., Pellegrini, Vincent, Eyes, Brian, Crooks, Daniel, Anderson, Marina, Ball, Elisabeth, McKeeman, Helen, Burns, James, Yau, Wing Hoi, Moore, Owen, Foo, Joanne, Benson, Claire, Patterson, Chris, Wright, Gary, Taggart, Allister, Drew, Sarah, Tanner, Lorraine, Sanyal, Kaushik, Bourke, Brian E., Alston, Claire, Baqai, Charlotte, Chard, Michael, Sandhu, Virinderjit, Jordan, Kelsey, Munns, Catherine, Zouita, Louisa, Shattles, Warren, Davies, Ursula, Makadsi, Raad, Griffith, Sian, Kiely, Patrick D., Dimofte, Ionela, Dabu, Mihaela, Dabu, Bogdan, Dobarro, David, Schreiber, Benjamin E., Warrell, Clare, Handler, Clive, Coghlan, Gerry, Denton, Chris, Ishorari, Jasmine, Bunn, Chris, Beynon, Huw, George Malal, Joby J., Boton-Maggs, Ben, Leung, Alexander, Farewell, Daniel, Choy, Ernest, Gullick, Nicola J., Choy, Ernest H., Wincup, Chris, Fisher, Ben, Charles, Peter, Pollard, Louise C., Kirkham, Bruce W., Ma, Margaret H., Ramanujan, Saroja, Cavet, Guy, Haney, Doug, Kingsley, Gabrielle H., Scott, David, Cope, Andrew, Singh, Animesh, Wilson, Jo, Isaacs, Anthony, Wing, Charlotte, McLaughlin, Maeve, Penn, Henry, Genovese, Mark C., Sebba, Anthony, Rubbert-Roth, Andrea, Scali, Juan, Zilberstein, Moshe, Thompson, Liz, Van Vollenhoven, Ronald, De Benedetti, Fabrizio, Brunner, Hermine, Allen, Roger, Brown, Diane, Chaitow, Jeffrey, Pardeo, Manuela, Espada, Graciela, Flato, Berit, Horneff, Gerd, Devlin, Clare, Kenwright, Andrew, Schneider, Rayfel, Woo, Patricia, Martini, Alberto, Lovell, Daniel, Ruperto, Nicola, John, Holly, Hale, Elizabeth D., Treharne, Gareth J., Carroll, Douglas, Mercer, Louise, Low, Audrey, Galloway, James, Watson, Kath, Lunt, Mark, Symmons, Deborah, Davies, Rebecca, Dixon, William, Balarajah, Sharmili, Sandhu, Amrita, Ariyo, Mercy, Rankin, Elizabeth, Sandoo, Aamer, van Zanten, Jet J. Veldhuijzen, Toms, Tracey E., Smith, Jacqueline P., Malik, Saadia, Toberty, Elizabeth, Thalayasingam, Nishanthi, Hamilton, Jennifer, Kelly, Clive, Puntis, Daniel, Saravanan, Vadivelu, Rynne, Martin, Heycock, Carol, Winter, Richard, Wardle, Phil, Toms, Tracey, Cadman, Susan, Nightingale, Peter, Kitas, George, Alhusain, Awal Z., Verstappen, Suzanne M., Mirjafari, Hoda, Charlton-Menys, Valentine, Bunn, Diane, Durrington, Paul, Cooney, Jennifer K., Moore, Jonathan P., Lemmey, Andrew, Jones, Jeremy G., Maddison, Peter J., Ahmad, Yasmeen A., Ahmed, Tazeen J., Leone, Francesca, Browne, Hannah K., Wig, Surabhi, Chevance, Aurelie, Moore, Tonia, Manning, Joanne, Vail, Andy, Herrick, Ariane L., Derrett-Smith, Emma, Hoyles, Rachel, Moinzadeh, Pia, Chighizola, Cecilia, Khan, Korsa, Abraham, David, Warrell, Clare E., Sykes, Rebecca, Muir, Lindsay, Ennis, Holly, Shiwen, Xu, Thompson, Katherine, Liu, Shangxi, Leask, Andrew, Abraham, David J., Strickland, Gemma, Pauling, John, Betteridge, Zoe, Dunphy, Juliet, Owen, Pat, McHugh, Neil, Abignano, Giuseppina, Cuomo, Giovanna, Buch, Maya H., Rosenberg, William M., Valentini, Gabriele, Del Galdo, Francesco, Jenkins, Jessica, Pauling, John D., Howell, Kevin, Nihtyanova, Svetlana, Fonseca, Carmen, Malaviya, Anshuman P., Hadjinicolaou, Andreas V., Nisar, Muhammad K., Ruddlesden, Michael, Furlong, Anita, Baker, Sharon, Hall, Frances C., Raut-Roy, Dominique, Peluso, Rosario, Dario Di Minno, M. N., Iervolino, Salvatore, Costa, Luisa, Atteno, Mariangela, Lofrano, Mariana, Soscia, Ernesto, Castiglione, Fabiana, Foglia, Francesca, Scarpa, Raffaele, Wallis, Dinny, Dougados, Maxime, Keystone, Edward, Heckaman, Michele, Mease, Philip, Landewé, Robert, Nguyen, Dianne, Winfield, Rachel A., Dyke, Claire, Clemence, Mark, Mackay, Kirsten, Haywood, Kirstie L., Packham, Jon, Jordan, Kelvin P., Davies, Helen, Brophy, Sinead, Irvine, Elizabeth, Cooksey, Roxanne, Dennis, Michael S., Siebert, Stefan, Ibrahim, Fowzia, Krueger, Gerald, Gathany, Tim, Mudivarthy, Surekha, Mack, Michael, Tandon, Neeta, Sieper, Joachim, Braun, Jürgen, van der Heijde, Désirée, Isaacs, John, Dahmen, Georg, Wollenhaupt, Jürgen, Schulze-Koops, Hendrik, Gsteiger, Sandro, Bertolino, Arthur, Hueber, Wolfgang, Tak, Paul P., Cohen, Carla J., Karaderi, Tugce, Pointon, Jennifer J., Wordsworth, Bryan P., Keidel, Sarah, Farrar, Claire, Appleton, Louise H., Adshead, Rebecca, Tahir, Hasan, Greenwood, Mandy, Donnelly, Simon P., Wajed, Julekha, and Kirkham, Bruce

Abstract

Background: Foot surgery is common in patients with RA but research into surgical outcomes is limited and conceptually flawed as current outcome measures lack face validity: to date no one has asked patients what is important to them. This study aimed to determine which factors are important to patients when evaluating the success of foot surgery in RA Methods: Semi structured interviews of RA patients who had undergone foot surgery were conducted and transcribed verbatim. Thematic analysis of interviews was conducted to explore issues that were important to patients. Results: 11 RA patients (9 ♂, mean age 59, dis dur = 22yrs, mean of 3 yrs post op) with mixed experiences of foot surgery were interviewed. Patients interpreted outcome in respect to a multitude of factors, frequently positive change in one aspect contrasted with negative opinions about another. Overall, four major themes emerged. Function: Functional ability & participation in valued activities were very important to patients. Walking ability was a key concern but patients interpreted levels of activity in light of other aspects of their disease, reflecting on change in functional ability more than overall level. Positive feelings of improved mobility were often moderated by negative self perception ("I mean, I still walk like a waddling duck”). Appearance: Appearance was important to almost all patients but perhaps the most complex theme of all. Physical appearance, foot shape, and footwear were closely interlinked, yet patients saw these as distinct separate concepts. Patients need to legitimize these feelings was clear and they frequently entered into a defensive repertoire ("it's not cosmetic surgery; it's something that's more important than that, you know?”). Clinician opinion: Surgeons' post operative evaluation of the procedure was very influential. The impact of this appraisal continued to affect patients' lasting impression irrespective of how the outcome compared to their initial goals ("when he'd done it ... he said that hasn't worked as good as he'd wanted to ... but the pain has gone”). Pain: Whilst pain was important to almost all patients, it appeared to be less important than the other themes. Pain was predominately raised when it influenced other themes, such as function; many still felt the need to legitimize their foot pain in order for health professionals to take it seriously ("in the end I went to my GP because it had happened a few times and I went to an orthopaedic surgeon who was quite dismissive of it, it was like what are you complaining about”). Conclusions: Patients interpret the outcome of foot surgery using a multitude of interrelated factors, particularly functional ability, appearance and surgeons' appraisal of the procedure. While pain was often noted, this appeared less important than other factors in the overall outcome of the surgery. Future research into foot surgery should incorporate the complexity of how patients determine their outcome Disclosure statement: All authors have declared no conflicts of interest

Published
2017

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