Health Policy Brief: i pilastri dell’Engagement in Emofilia


  • Guendalina Graffigna Consumer, Food & Health Engagement Research Center, Department of Psychology, Università Cattolica del Sacro Cuore, Milano - Italy
  • Serena Barello Consumer, Food & Health Engagement Research Center, Department of Psychology, Università Cattolica del Sacro Cuore, Milano - Italy
  • Caterina Bosio Consumer, Food & Health Engagement Research Center, Department of Psychology, Università Cattolica del Sacro Cuore, Milano - Italy
  • Chiara Biasoli AICE (Associazione Italiana Centri Emofilia) - Italy
  • Andrea Buzzi Fondazione Paracelso - Italy
  • Cristina Cassone FedEmo (Federazione delle Associazioni Emofilici) - Italy
  • Luigi Ambroso FedEmo (Federazione delle Associazioni Emofilici) - Italy
  • Patrizia Di Gregorio Servizio di Medicina Trasfusionale Aziendale, Centro Emostasi e Trombosi, Chieti - Italy
  • Lorenzo Farace FedEmo (Federazione delle Associazioni Emofilici) - Italy
  • Paola Giordano Azienda Ospedaliera Universitaria Policlinico di Bari, Centro Emofilia Pediatrico, UOC “B. Trambusti”, Bari - Italy
  • Renato Marino Azienda Ospedaliero Universitaria, Ospedale Policlinico Consorziale, UOSD Emofilia e Trombosi, Bari - Italy
  • Irene Ricca PPresidio Ospedale Infantile Regina Margherita/S. Anna, Città della Salute e della Scienza, Centro Emofilia Pediatrico, SSD Trasfusionale Materno-Infantile e Traumatologico, Torino - Italy
  • Angiola Rocino Ospedale del Mare, UOC di Ematologia, Centro Emofilia e Trombosi, Napoli - Italy



Engagement, Hemophilia, Patient, Policy Brief, Recommendations


About 5000 people in Italy suffer from hemophilia, the most common coagulation disorder. As for other chronic diseases, even in the case of hemophilia, the engagement of the patient is essential: the patients, in fact, must be empowered and helped to become strong partners of the care team and sensitized with respect to their rights and duties for the successful achievement of the goals set by their healthcare path. Hence the initiative to start a new research-intervention project in the field of hemophilia. The study had different phases of research: a first moment inspired by the principles of narrative medicine, aimed at collecting stories and narratives of patients with hemophilia related to the experience of the disease and therapy and expectations of active involvement in the relationship with the clinician. At the same time, among hematologists and patients has been surveyed the experience of therapeutical relationship and communication, to capture the aspects in which they feel effective and the areas of improvement and unmet needs. Subsequently, a workshop dedicated to patients and hematologists was organized to foster mutual awareness between these two targets and the formation of a better communication and relational skills of clinicians.

The results of the project formed the basis for a policy brief document, aimed at disseminating recommendations to support better relationship and empathic communication between clinicians and patients.


Download data is not yet available.


Hibbard JH, Greene J, Tusler M. Improving the outcomes of disease management by tailoring care to the patient’s level of activation. Am J Manag Care. 2009;15(6):353-360. PMID:19514801 DOI:

Acquila M, Bicocchi P, Frusconi S, Lombardi AM. Linee guida per la diagnosi molecolare di Emofilia A.

Thornburg CD, Carpenter S, Zappa S, et al. Modern haemophilia treatment: medical improvements and quality of life. Haemophilia. 2013;4(4):91.

Schrijvers L, Beijlevelt-Van der Zande M, Peters M, et al. Achieving self-management of prophylactic treatment in adolescents: the case of haemophilia. Patient Educ Couns. 2016;99(7):1179-1183. PMID:26851159 DOI:

Rosendaal FR, Smit C, Varekamp I, et al. Modern haemophilia treatment: medical improvements and quality of life. J Intern Med. 1990;228(6):633-640. PMID:2280241 DOI:

Alexander JA, Hearld LR, Mittler JN, Harvey J. Patient-physician role relationships and patient activation among individuals with chronic illness. Health Serv Res. 2012;47(3 Pt 1):1201-1223. PMID:22098418 DOI:

McLaughlin JM, Witkop ML, Lambing A, Anderson TL, Munn J, Tortella B. Better adherence to prescribed treatment regimen is related to less chronic pain among adolescents and young adults with moderate or severe haemophilia. Haemophilia. 2014;20(4):506-512. PMID:24517097 DOI:

Potì S, Palareti L, Cassis FRMY, Brondi S. Health care professionals dealing with hemophilia: insights from the international qualitative study of the HERO initiative. J Multidiscip Healthc. 2019;12:361-375. PMID:31190855 DOI:

Berntorp E, Boulyjenkov V, Brettler D, et al. Modern treatment of haemophilia. Bull World Health Organ. 1995;73(5):691-701. PMID:8846496

Horne R, Parham R, Driscoll R, Robinson A. Patients’ attitudes to medicines and adherence to maintenance treatment in inflammatory bowel disease. Inflamm Bowel Dis. 2009;15(6):837-844. PMID:19107771 DOI:

Lamiani G, Strada I, Mancuso ME, Coppola A, Vegni E, Moja EA; Pro-Adherence Study Group. Factors influencing illness representations and perceived adherence in haemophilic patients: a pilot study. Haemophilia. 2015;21(5):598-604. DOI:

Watson D, Clark LA, Tellegen A, et al. The behaviour and perception of illness: modulating variables of adherence in patients with haemophilia. Haemophilia. 2017;18(6):577-583. DOI:

Tran DQ, Barry V, Antun A, Ribeiro M, Stein S, Kempton CL. Physician trust and depression influence adherence to factor replacement: a single-centre cross-sectional study. Haemophilia. 2017;23(1):98-104. PMID:27686244 DOI:

Breakey VR, Blanchette VS, Bolton-Maggs PHB. Towards comprehensive care in transition for young people with haemophilia. Haemophilia. 2010;16(6):848-857. PMID:20491954 DOI:

Hacker MR, Geraghty S, Manco-Johnson M. Barriers to compliance with prophylaxis therapy in haemophilia. Haemophilia. 2001;7(4):392-396. PMID:11442644 DOI:

Geraghty S, Dunkley T, Harrington C, Lindvall K, Maahs J, Sek J. Practice patterns in haemophilia A therapy — global progress towards optimal care. Haemophilia. 2006;12(1):75-81. PMID:16409179 DOI:

Iannone M, Pennick L, Tom A, et al. Prevalence of depression in adults with haemophilia. Haemophilia. 2012;18(6):868-874. DOI:

Miller TA. Health literacy and adherence to medical treatment in chronic and acute illness: A meta-analysis. Patient Educ Couns. 2016;99(7):1079-1086. PMID:26899632 DOI:

von der Lippe C, Frich JC, Harris A, Solbrække KN. “It was a lot tougher than I thought it would be”. A qualitative study on the changing nature of being a hemophilia carrier. J Genet Couns. 2017;26(6):1324-1332. PMID:28547664 DOI:

Fischer K, van der Bom JG, Molho P, et al. Prophylactic versus on-demand treatment strategies for severe haemophilia: a comparison of costs and long-term outcome. Haemophilia. 2002;8(6):745-752. PMID:12410642 DOI:

Beard JR, Officer A, de Carvalho IA, et al. The World report on ageing and health: a policy framework for healthy ageing. Lancet. 2016;387(10033):2145-2154. PMID:26520231 DOI:

Krishnan S, Vietri J, Furlan R, Duncan N. Adherence to prophylaxis is associated with better outcomes in moderate and severe haemophilia: results of a patient survey. Haemophilia. 2015;21(1):64-70. PMID:25470071 DOI:

Ono O, Suzuki Y, Yosikawa K, et al; Planning Committee, Japanese Nurse Group for Research of Hemophilia Care. Assessment of haemophilia treatment practice pattern in Japan. Haemophilia. 2009;15(5):1032-1038. PMID:19476508 DOI:

Petrini P. Identifying and overcoming barriers to prophylaxis in the management of haemophilia. Haemophilia. 2007;13(s2)(suppl 2):16-22. PMID:17685919 DOI:

Zappa S, McDaniel M, Marandola J, Allen G. Treatment trends for haemophilia A and haemophilia B in the United States: results from the 2010 practice patterns survey. Haemophilia. 2012;18(3):e140-e153. PMID:22533455 DOI:

Graffigna G, Barello S, Riva G, et al; CCIPE Working Group. Promozione del patient engagement in ambito clinico-Assistenziale per le malattie croniche: raccomandazioni dalla prima conferenza di consenso italiana. Recenti Prog Med. 2017;108(11):455-475. PMID:29149163

Graffigna G, Barello S, Bonanomi A. The role of Patient Health Engagement Model (PHE-model) in affecting patient activation and medication adherence: A structural equation model. PLoS One. 2017;12(6):e0179865. PMID:28654686 DOI:

Graffigna G, Barello S. Spotlight on the Patient Health Engagement model (PHE model): a psychosocial theory to understand people’s meaningful engagement in their own health care. Patient Prefer Adherence. 2018;12:1261-1271. DOI:

Ng M, Fleming T, Robinson M, et al. Global, regional, and national prevalence of overweight and obesity in children and adults during 1980-2013: a systematic analysis for the Global Burden of Disease Study 2013. Lancet. 2014;384(9945):766-781. PMID:24880830 DOI:

Maiman LA, Becker MH. The Health Belief Model: Origins and Correlates in Psychological Theory. Health Educ Monogr. 1974;2(4):336-353. DOI:

Frenk J, Chen L, Bhutta ZA, et al. Health professionals for a new century: transforming education to strengthen health systems in an interdependent world. Lancet. 2010;376(9756):1923-1958. PMID:21112623 DOI:

Hibbard JH, Greene J. What the evidence shows about patient activation: better health outcomes and care experiences; fewer data on costs. Health Aff (Millwood). 2013;32(2):207-214. PMID:23381511 DOI:

Webb SM, Martínez-Momblán MA, Resmini E, Valassi E, Santos A. Quality of life in patients with pituitary tumors. Curr Opin Endocr Metab Res. 2018;1:67-73. DOI:

Barello S, Graffigna G, Pitacco G, Mislej M, Cortale M, Provenzi L. An Educational Intervention to Train Professional Nurses in Promoting Patient Engagement: A Pilot Feasibility Study. Front Psychol. 2017;7:2020. PMID:28119644 DOI:

Johansen NJ, Saunders CM. Value-Based Care in the Worldwide Battle Against Cancer. Cureus. 2017;9(2):e1039. PMID:28357171 DOI:

Estes A, Munson J, Dawson G, Koehler E, Zhou X-H, Abbott R. Parenting stress and psychological functioning among mothers of preschool children with autism and developmental delay. Autism. 2009;13(4):375-387. PMID:19535467 DOI:

Dewey KG, Begum K. Long-term consequences of stunting in early life. Matern Child Nutr. 2011;7(suppl 3):5-18. PMID:21929633 DOI:

van Deursen AJAM. Internet skill-related problems in accessing online health information. Int J Med Inform. 2012;81(1):61-72. PMID:22079240 DOI:

Epping-Jordan JE, Pruitt SD, Bengoa R, Wagner EH. Improving the quality of health care for chronic conditions. Qual Saf Health Care. 2004;13(4):299-305. PMID:15289634 DOI:

Huttner A, Harbarth S, Carlet J, et al. Antimicrobial resistance: a global view from the 2013 World Healthcare-Associated Infections Forum. Antimicrob Resist Infect Control. 2013;2(1):31. PMID:24237856 DOI:

Ginsburg L, Berta W, Baumbusch J, et al. Measuring work engagement, psychological empowerment, and organizational citizenship behavior among health care aides. Gerontologist. 2016;56(2):e1-e11. PMID:26884061 DOI:

Brom L, Hopmans W, Pasman HR, Timmermans DR, Widdershoven GA, Onwuteaka-Philipsen BD. Congruence between patients' preferred and perceived participation in medical decision-making: a review of the literature. BMC Med Inform Decis Mak. 2014 Apr 3;14:25. PMID 24708833 DOI:

Bediako SM, Lanzkron S, Diener-West M, Onojobi G, Beach MC, Haywood C Jr. The measure of sickle cell stigma: initial findings from the improving patient outcomes through respect and trust study. J Health Psychol. 2016;21(5):808-820. PMID:24997169 DOI:

Hibbard JH, Greene J, Shi Y, Mittler J, Scanlon D. Taking the long view: how well do patient activation scores predict outcomes four years later?. Medical Care Research and Review. 2015; 72(3): 324-337. PMID: 25716663 DOI:

Thornburg CD, Duncan NA. Treatment adherence in hemophilia. Patient Prefer Adherence. 2017;11:1677-1686. PMID:29033555 DOI:

Thom DH, Campbell B. Patient-physician trust: an exploratory study. J Fam Pract. 1997;44(2):169-176. PMID:9040520

Hibbard JH, Stockard J, Mahoney ER, Tusler M. Development of the Patient Activation Measure (PAM): Conceptualizing and measuring activation in patients and consumers. Health Serv Res. 2004;39(4p1):1005-1026. PMID: 15230939 DOI:

Gruman J, Rovner MH, French ME, et al. From patient education to patient engagement: implications for the field of patient education. Patient Educ Couns. 2010;78(3):350-356. PMID:20202780 DOI:

Graffigna, G. SB. Engagement. Un nuovo modello di partecipazione in sanità. Roma: Il Pensiero Scientifico; 2017



How to Cite

Graffigna, G., Barello, S., Bosio, C., Biasoli, C., Buzzi, A., Cassone, C., Ambroso, L., Di Gregorio, P., Farace, L., Giordano, P., Marino, R., Ricca, I., & Rocino, A. (2022). Health Policy Brief: i pilastri dell’Engagement in Emofilia. AboutOpen, 9(1), 3–9.



Original research articles


Received 2021-07-29
Accepted 2021-12-21
Published 2022-01-19