Health Policy Brief: i pilastri dell’Engagement in Emofilia
DOI:
https://doi.org/10.33393/ao.2022.2319Keywords:
Engagement, Hemophilia, Patient, Policy Brief, RecommendationsAbstract
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.
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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. https://doi.org/10.1007/s11606-011-1931-2 PMID:19514801 DOI: https://doi.org/10.1007/s11606-011-1931-2
Acquila M, Bicocchi P, Frusconi S, Lombardi AM. Linee guida per la diagnosi molecolare di Emofilia A. https://www.researchgate.net/profile/Anna-Maria-Lombardi/publication/264888691_LINEE_GUIDA_PER_LA_DIAGNOSI_MOLECOLARE_DI_EMOFILIA_A/links/550ab4c90cf28556409519ca/LINEE-GUIDA-PER-LA-DIAGNOSI-MOLECOLARE-DI-EMOFILIA-A.pdf
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. https://doi.org/10.1016/j.pec.2016.01.016 PMID:26851159 DOI: https://doi.org/10.1016/j.pec.2016.01.016
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. https://doi.org/10.1111/j.1365-2796.1990.tb00291.x PMID:2280241 DOI: https://doi.org/10.1111/j.1365-2796.1990.tb00291.x
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. https://doi.org/10.1111/j.1475-6773.2011.01354.x PMID:22098418 DOI: https://doi.org/10.1111/j.1475-6773.2011.01354.x
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. https://doi.org/10.1111/hae.12360 PMID:24517097 DOI: https://doi.org/10.1111/hae.12360
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. https://doi.org/10.2147/JMDH.S201759 PMID:31190855 DOI: https://doi.org/10.2147/JMDH.S201759
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. https://doi.org/10.1002/ibd.20846 PMID:19107771 DOI: https://doi.org/10.1002/ibd.20846
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. https://doi.org/10.1111/hae.12654PMID:25684356 DOI: https://doi.org/10.1111/hae.12654
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: https://doi.org/10.1111/vox.12669
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. https://doi.org/10.1111/hae.13078 PMID:27686244 DOI: https://doi.org/10.1111/hae.13078
Breakey VR, Blanchette VS, Bolton-Maggs PHB. Towards comprehensive care in transition for young people with haemophilia. Haemophilia. 2010;16(6):848-857. https://doi.org/10.1111/j.1365-2516.2010.02249.x PMID:20491954 DOI: https://doi.org/10.1111/j.1365-2516.2010.02249.x
Hacker MR, Geraghty S, Manco-Johnson M. Barriers to compliance with prophylaxis therapy in haemophilia. Haemophilia. 2001;7(4):392-396. PMID:11442644 DOI: https://doi.org/10.1111/j.1365-2516.2001.00534.x
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. https://doi.org/10.1111/j.1365-2516.2006.01189.x PMID:16409179 DOI: https://doi.org/10.1111/j.1365-2516.2006.01189.x
Iannone M, Pennick L, Tom A, et al. Prevalence of depression in adults with haemophilia. Haemophilia. 2012;18(6):868-874. https://doi.org/10.1111/j.1365-2516.2012.02863.xPMID:22642565 DOI: https://doi.org/10.1111/j.1365-2516.2012.02863.x
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. https://doi.org/10.1016/j.pec.2016.01.020 PMID:26899632 DOI: https://doi.org/10.1016/j.pec.2016.01.020
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. https://doi.org/10.1007/s10897-017-0112-9 PMID:28547664 DOI: https://doi.org/10.1007/s10897-017-0112-9
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. https://doi.org/10.1046/j.1365-2516.2002.00695.x PMID:12410642 DOI: https://doi.org/10.1046/j.1365-2516.2002.00695.x
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. https://doi.org/10.1016/S0140-6736(15)00516-4 PMID:26520231 DOI: https://doi.org/10.1016/S0140-6736(15)00516-4
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. https://doi.org/10.1111/hae.12533 PMID:25470071 DOI: https://doi.org/10.1111/hae.12533
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. https://doi.org/10.1111/j.1365-2516.2009.02041.x PMID:19476508 DOI: https://doi.org/10.1111/j.1365-2516.2009.02041.x
Petrini P. Identifying and overcoming barriers to prophylaxis in the management of haemophilia. Haemophilia. 2007;13(s2)(suppl 2):16-22. https://doi.org/10.1111/j.1365-2516.2007.01501.x PMID:17685919 DOI: https://doi.org/10.1111/j.1365-2516.2007.01501.x
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. https://doi.org/10.1111/j.1365-2516.2012.02770.x PMID:22533455 DOI: https://doi.org/10.1111/j.1365-2516.2012.02770.x
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. https://doi.org/10.1701/2812.28441 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. https://doi.org/10.1371/journal.pone.0179865 PMID:28654686 DOI: https://doi.org/10.1371/journal.pone.0179865
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. https://doi.org/10.2147/PPA.S145646PMID:30050288 DOI: https://doi.org/10.2147/PPA.S145646
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. https://doi.org/10.1016/S0140-6736(14)60460-8 PMID:24880830 DOI: https://doi.org/10.1016/S0140-6736(14)60460-8
Maiman LA, Becker MH. The Health Belief Model: Origins and Correlates in Psychological Theory. Health Educ Monogr. 1974;2(4):336-353. https://doi.org/10.1177/109019817400200404 DOI: https://doi.org/10.1177/109019817400200404
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. https://doi.org/10.1016/S0140-6736(10)61854-5 PMID:21112623 DOI: https://doi.org/10.1016/S0140-6736(10)61854-5
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. https://doi.org/10.1377/hlthaff.2012.1061 PMID:23381511 DOI: https://doi.org/10.1377/hlthaff.2012.1061
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. https://doi.org/10.1016/j.coemr.2018.02.004 DOI: https://doi.org/10.1016/j.coemr.2018.02.004
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. https://doi.org/10.3389/fpsyg.2016.02020 PMID:28119644 DOI: https://doi.org/10.3389/fpsyg.2016.02020
Johansen NJ, Saunders CM. Value-Based Care in the Worldwide Battle Against Cancer. Cureus. 2017;9(2):e1039. https://doi.org/10.7759/cureus.1039 PMID:28357171 DOI: https://doi.org/10.7759/cureus.1039
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. https://doi.org/10.1177/1362361309105658 PMID:19535467 DOI: https://doi.org/10.1177/1362361309105658
Dewey KG, Begum K. Long-term consequences of stunting in early life. Matern Child Nutr. 2011;7(suppl 3):5-18. https://doi.org/10.1111/j.1740-8709.2011.00349.x PMID:21929633 DOI: https://doi.org/10.1111/j.1740-8709.2011.00349.x
van Deursen AJAM. Internet skill-related problems in accessing online health information. Int J Med Inform. 2012;81(1):61-72. https://doi.org/10.1016/j.ijmedinf.2011.10.005 PMID:22079240 DOI: https://doi.org/10.1016/j.ijmedinf.2011.10.005
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. https://doi.org/10.1136/qshc.2004.010744 PMID:15289634 DOI: https://doi.org/10.1136/qshc.2004.010744
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. https://doi.org/10.1186/2047-2994-2-31 PMID:24237856 DOI: https://doi.org/10.1186/2047-2994-2-31
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. https://doi.org/10.1093/geront/gnv129 PMID:26884061 DOI: https://doi.org/10.1093/geront/gnv129
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. https://doi.org/10.1186/1472-6947-14-25 PMID 24708833 DOI: https://doi.org/10.1186/1472-6947-14-25
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. https://doi.org/10.1177/1359105314539530 PMID:24997169 DOI: https://doi.org/10.1177/1359105314539530
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. https://doi.org/10.1177/1077558715573871 PMID: 25716663 DOI: https://doi.org/10.1177/1077558715573871
Thornburg CD, Duncan NA. Treatment adherence in hemophilia. Patient Prefer Adherence. 2017;11:1677-1686. https://doi.org/10.2147/PPA.S139851 PMID:29033555 DOI: https://doi.org/10.2147/PPA.S139851
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. https://doi.org/10.1111/j.1475-6773.2004.00269.x PMID: 15230939 DOI: https://doi.org/10.1111/j.1475-6773.2004.00269.x
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. https://doi.org/10.1016/j.pec.2010.02.002 PMID:20202780 DOI: https://doi.org/10.1016/j.pec.2010.02.002
Graffigna, G. SB. Engagement. Un nuovo modello di partecipazione in sanità. Roma: Il Pensiero Scientifico; 2017
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Copyright (c) 2022 Guendalina Graffigna, Serena Barello, Caterina Bosio, Chiara Biasoli, Andrea Buzzi, Cristina Cassone, Luigi Ambroso, Patrizia Di Gregorio, Lorenzo Farace, Paola Giordano, Renato Marino, Irene Ricca, Angiola Rocino
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Accepted 2021-12-21
Published 2022-01-19
