Contenuto dell'articolo principale
Abstract
Background: La malattia infiammatoria intestinale (IBD) è una condizione cronica caratterizzata da recidive acute che hanno un impatto importante sulla qualità della vita dei pazienti, sia fisicamente che psicologicamente. Nella cura personalizzata dei pazienti IBD, un ruolo chiave è ricoperto dall'infermiere IBD, che fornisce supporto psicologico ed educativo, nonché una fonte di contatto per tutti i pazienti.
Obiettivo: lo scopo del presente studio era valutare la percezione dei pazienti con IBD sui ruoli, le competenze e le abilità degli infermieri IBD in un centro specializzato. Questa è la base per ulteriori programmi volti a migliorare la qualità dell'assistenza.
Metodi: un questionario composto da 15 dichiarazioni riguardanti il ruolo dell'infermiere IBD nel loro trattamento è stato offerto a tutti i pazienti che frequentano questo centro IBD per un periodo di 3 mesi. I risultati sono stati mostrati confrontando quelli dei pazienti attualmente in trattamento con una terapia biologica con quelli che ricevono una terapia non biologica.
Risultati: i pazienti in questo centro hanno una scarsa consapevolezza del ruolo infermieristico IBD, in particolare quelli che non ricevono cure biologiche. Sebbene la maggior parte dei pazienti sia consapevole di poter utilizzare l'infermiere IBD come punto di contatto, la maggior parte non è a conoscenza delle qualifiche dell'infermiere IBD per discutere le proprie opzioni di trattamento e fornire supporto psicologico.
Conclusioni: l’indagine mostra che la figura dell'infermiere IBD è ancora poco riconosciuta dai pazienti, con una probabile conseguente sottoutilizzazione dei servizi di un professionista altamente qualificato e istruito. Diverse questioni chiave per il miglioramento del servizio infermieristico IBD sono state sollevate da questo studio e richiedono indagini simili in altri centri.
Parole chiave: malattie infiammatorie intestinali, infermiere IBD, infermiere specialista, percezione del paziente, comunicazione, educazione, assistenza psicologica, risultati migliori
Parole chiave
Dettagli dell'articolo
Riferimenti
- Arora, V., Gangireddy, S., Mehrotra, A., Ginde, R., Tormey, M., & Meltzer, D. (2009). Ability of Hospitalized Patients to Identify Their In-Hospital Physicians. Archives of Internal Medicine, 169(2), 199. Avaible on https://doi.org/10.1001/
- archinternmed.2008.565
- Burisch, J., Jess, T., Martinato, M., & Lakatos, P. L. (2013). The burden of inflammatory bowel disease in Europe. Journal of Crohn’s and Colitis, 7(4), 322–337. https://doi.org/10.1016 /j.crohns.2013.01.010
- Burisch, J., Pedersen, N., Čuković-Čavka, S., Brinar, M., Kaimakliotis, I., Duricova, D., Shonová, O., Vind, I., Avnstrøm, S., Thorsgaard, N., Andersen, V., Krabbe, S., Dahlerup, J. F., Salupere, R., Nielsen, K. R., Olsen, J., Manninen, P., Collin, P., Tsianos, E. V., … Munkholm, P. (2013). East–West gradient in the incidence of inflammatory bowel disease in Europe: the ECCO-EpiCom inception cohort. Gut, 63(4), 588–597. https://doi.org/10.1136/gutjnl-2013-304636
- Connell, W. R., Samyue, T., Gibson, P. R., Lachal, S., Moore, G. T., Macrae, F. A., & Van Langenberg, D. R. (2015b). Changing face of care for patients with moderate to severe inflammatory bowel disease: the role of specialist nurses in the governance of anti-TNF prescribing. Internal Medicine Journal, 45(11), 1161–1166. https://doi.org/10.1111/imj.12861
- Cosnes, J., Gower–Rousseau, C., Seksik, P., & Cortot, A. (2011). Epidemiology and Natural History of Inflammatory Bowel Diseases. Gastroenterology, 140(6), 1785-1794.e4. https://doi.org/10.1053/j.gastro.2011.01.055
- Curtis, J. R., Back, A. L., Ford, D. W., Downey, L., Shannon, S. E., Doorenbos, A. Z., Kross, E. K., Reinke, L. F., Feemster, L. C., Edlund, B., Arnold, R. W., O’Connor, K., & Engelberg, R. A. (2013). Effect of Communication Skills Training for Residents and Nurse Practitioners on Quality of Communication With Patients With Serious Illness. JAMA, 310(21), 2271. https://doi.org/10.1001/jama.2013.282081
- Fu, N., Jacobson, K., Round, A., Evans, K., Qian, H., & Bressler, B. (2017). Transition clinic attendance is associated with improved beliefs and attitudes toward medicine in patients with inflammatory bowel disease. World Journal of Gastroenterology, 23(29), 5405. https://doi.org/10.3748/ wjg.v23.i29.5405
- Gionchetti, P., Dignass, A., Danese, S., Magro Dias, F. J., Rogler, G., Lakatos, P. L., Adamina, M., Ardizzone, S., Buskens, C. J., Sebastian, S., Laureti, S., Sampietro, G. M., Vucelic, B., van der Woude, C. J., Barreiro-de Acosta, M., Maaser, C., Portela, F., Vavricka, S. R., & Gomollón, F. (2016). 3rd European Evidence-based Consensus on the Diagnosis and Management of Crohn’s Disease 2016: Part 2: Surgical Management and Special Situations. Journal of Crohn’s and Colitis, 11(2), 135–149. https://doi.org/10.1093/ecco-jcc/jjw169
- Gomollón, F., Dignass, A., Annese, V., Tilg, H., Van Assche, G., Lindsay, J. O., Peyrin-Biroulet, L., Cullen, G. J., Daperno, M., Kucharzik, T., Rieder, F., Almer, S., Armuzzi, A., Harbord, M., Langhorst, J., Sans, M., Chowers, Y., Fiorino, G., Juillerat, P., … Gionchetti, P. (2016). 3rd European Evidence-based Consensus on the Diagnosis and Management of Crohn’s Disease 2016: Part 1: Diagnosis and Medical Management. Journal of Crohn’s and Colitis, 11(1), 3–25. https://doi.org/10.1093/ecco-jcc/jjw168
- Hernández-Sampelayo, P., Seoane, M., Oltra, L., Marín, L., Torrejón, A., Vera, M. I., García, V., Lázaro, P., Parody, E., Blasco, A. J., & Casellas, F. (2010). Contribution of nurses to the quality of care in management of inflammatory bowel disease: A synthesis of the evidence. Journal of Crohn’s and Colitis, 4(6), 611–622. https://doi.org/10.1016/j.crohns.2010.08.009
- Hunter, J., Claridge, A., James, S., Chan, D., Stacey, B., Stroud, M., Patel, P., Fine, D., & Cummings, J. R. F. (2012). Improving outpatient services: the Southampton IBD virtual clinic. Postgraduate Medical Journal, 88(1042), 487–491. https://doi.org/10.1136/postgradmedj-2012-100123rep
- IsHak, W. W., Pan, D., Steiner, A. J., Feldman, E., Mann, A., Mirocha, J., Danovitch, I., & Melmed, G. Y. (2017). Patient-Reported Outcomes of Quality of Life, Functioning, and GI/Psychiatric Symptom Severity in Patients with Inflammatory Bowel Disease (IBD). Inflammatory Bowel Diseases, 23(5), 798–803. https://doi.org/10.1097/mib.0000000000001060
- Jackson, C. A., Clatworthy, J., Robinson, A., & Horne, R. (2010). Factors Associated With Non-Adherence to Oral Medication for Inflammatory Bowel Disease: A Systematic Review. American Journal of Gastroenterology, 105(3), 525–539. https://doi.org/10.1038/ajg.2009.685
- Jelsness-Jørgensen, L.-P., Bernklev, T., Henriksen, M., Torp, R., & Moum, B. (2012). Is patient reported outcome (PRO) affected by different follow-up regimens in inflammatory bowel disease (IBD)? A one year prospective, longitudinal comparison of nurse-led versus conventional follow-up. Journal of Crohn’s and Colitis, 6(9), 887–894. https://doi.org/10.1016/j.crohns.2012.01.021
- Leach, P., De Silva, M., Mountifield, R., Edwards, S., Chitti, L., Fraser, R. J. L., & Bampton, P. (2014). The effect of an inflammatory bowel disease nurse position on service delivery. Journal of Crohn’s and Colitis, 8(5), 370–374. https://doi.org/10.1016/j.crohns.2013.09.018
- Lönnfors, S., Vermeire, S., Greco, M., Hommes, D., Bell, C., & Avedano, L. (2014). IBD and health-related quality of life — Discovering the true impact. Journal of Crohn’s and Colitis, 8(10), 1281–1286. https://doi.org/10.1016/j.crohns.2014.03.005
- Louis, E., Dotan, I., Ghosh, S., Mlynarsky, L., Reenaers, C., & Schreiber, S. (2015). Optimising the Inflammatory Bowel Disease Unit to Improve Quality of Care: Expert Recommendations: Table 1. Journal of Crohn’s and Colitis, 9(8), 685–691. https://doi.org/10.1093/ecco-jcc/jjv085
- Magro, F., Gionchetti, P., Eliakim, R., Ardizzone, S., Armuzzi, A., Barreiro-de Acosta, M., Burisch, J., Gecse, K. B., Hart, A. L., Hindryckx, P., Langner, C., Limdi, J. K., Pellino, G., Zagórowicz, E., Raine, T., Harbord, M., & Rieder, F. (2017). Third European Evidence-based Consensus on Diagnosis and Management of Ulcerative Colitis. Part 1: Definitions, Diagnosis, Extra-intestinal Manifestations, Pregnancy, Cancer Surveillance, Surgery, and Ileo-anal Pouch Disorders. Journal of Crohn’s and Colitis, 11(6), 649–670. https://doi.org/10.1093/ecco-jcc/jjx008
- Mawdsley, J. E. D., Irving, P. M., Makins, R. J., & Rampton, D. S. (2006). Optimizing quality of outpatient care for patients with inflammatory bowel disease: the importance of specialist clinics. European Journal of Gastroenterology & Hepatology, 18(3), 249–253. https://doi.org/10.1097/00042737-200603000-00004
- Mountifield, R., Andrews, J. M., Mikocka-Walus, A., & Bampton, P. (2014). Covert dose reduction is a distinct type of medication non-adherence observed across all care settings in Inflammatory Bowel Disease. Journal of Crohn’s and Colitis, 8(12), 1723–1729. https://doi.org/10.1016/j.crohns.2014.08.013
- Mowat, C., Cole, A., Windsor, A., Ahmad, T., Arnott, I., Driscoll, R., Mitton, S., Orchard, T., Rutter, M., Younge, L., Lees, C., Ho, G., Satsangi, J., & Bloom, S. (2011). Guidelines for the management of inflammatory bowel disease in adults. Gut, 60(5), 571–607. https://doi.org/10.1136/gut.2010.224154
- Nightingale, A. J., Middleton, W., Middleton, S. J., & Hunter, J. O. (2000). Evaluation of the effectiveness of a specialist nurse in the management of inflammatory bowel disease (IBD). European Journal of Gastroenterology & Hepatology, 12(9), 967–973. https://doi.org/10.1097/00042737-200012090-00001
- O’Connor, M., Bager, P., Duncan, J., Gaarenstroom, J., Younge, L., Détré, P., Bredin, F., Dibley, L., Dignass, A., Gallego Barrero, M., Greveson, K., Hamzawi, M., Ipenburg, N., Keegan, D., Martinato, M., Murciano Gonzalo, F., Pino Donnay, S., Price, T., Ramirez Morros, A., … van de Woude, C. J. (2013). N-ECCO Consensus statements on the European nursing roles in caring for patients with Crohn’s disease or ulcerative colitis. Journal of Crohn’s and Colitis, 7(9), 744–764. https://doi.org/10.1016/j.crohns.2013.06.004
- Sack, C., Phan, V. A., Grafton, R., Holtmann, G., van Langenberg, D. R., Brett, K., Clark, M., & Andrews, J. M. (2012). A chronic care model significantly decreases costs and healthcare utilisation in patients with inflammatory bowel disease. Journal of Crohn’s and Colitis, 6(3), 302–310. https://doi.org/10.1016/j.crohns.2011.08.019
- Smith, G. D., Watson, R., Roger, D., McRorie, E., Hurst, N., Luman, W., & Palmer, K. R. (2002). Impact of a nurse-led counselling service on quality of life in patients with inflammatory bowel disease. Journal of Advanced Nursing, 38(2), 152–160. https://doi.org/10.1046/j.1365-2648.2002.02159.x
Riferimenti
Arora, V., Gangireddy, S., Mehrotra, A., Ginde, R., Tormey, M., & Meltzer, D. (2009). Ability of Hospitalized Patients to Identify Their In-Hospital Physicians. Archives of Internal Medicine, 169(2), 199. Avaible on https://doi.org/10.1001/
archinternmed.2008.565
Burisch, J., Jess, T., Martinato, M., & Lakatos, P. L. (2013). The burden of inflammatory bowel disease in Europe. Journal of Crohn’s and Colitis, 7(4), 322–337. https://doi.org/10.1016 /j.crohns.2013.01.010
Burisch, J., Pedersen, N., Čuković-Čavka, S., Brinar, M., Kaimakliotis, I., Duricova, D., Shonová, O., Vind, I., Avnstrøm, S., Thorsgaard, N., Andersen, V., Krabbe, S., Dahlerup, J. F., Salupere, R., Nielsen, K. R., Olsen, J., Manninen, P., Collin, P., Tsianos, E. V., … Munkholm, P. (2013). East–West gradient in the incidence of inflammatory bowel disease in Europe: the ECCO-EpiCom inception cohort. Gut, 63(4), 588–597. https://doi.org/10.1136/gutjnl-2013-304636
Connell, W. R., Samyue, T., Gibson, P. R., Lachal, S., Moore, G. T., Macrae, F. A., & Van Langenberg, D. R. (2015b). Changing face of care for patients with moderate to severe inflammatory bowel disease: the role of specialist nurses in the governance of anti-TNF prescribing. Internal Medicine Journal, 45(11), 1161–1166. https://doi.org/10.1111/imj.12861
Cosnes, J., Gower–Rousseau, C., Seksik, P., & Cortot, A. (2011). Epidemiology and Natural History of Inflammatory Bowel Diseases. Gastroenterology, 140(6), 1785-1794.e4. https://doi.org/10.1053/j.gastro.2011.01.055
Curtis, J. R., Back, A. L., Ford, D. W., Downey, L., Shannon, S. E., Doorenbos, A. Z., Kross, E. K., Reinke, L. F., Feemster, L. C., Edlund, B., Arnold, R. W., O’Connor, K., & Engelberg, R. A. (2013). Effect of Communication Skills Training for Residents and Nurse Practitioners on Quality of Communication With Patients With Serious Illness. JAMA, 310(21), 2271. https://doi.org/10.1001/jama.2013.282081
Fu, N., Jacobson, K., Round, A., Evans, K., Qian, H., & Bressler, B. (2017). Transition clinic attendance is associated with improved beliefs and attitudes toward medicine in patients with inflammatory bowel disease. World Journal of Gastroenterology, 23(29), 5405. https://doi.org/10.3748/ wjg.v23.i29.5405
Gionchetti, P., Dignass, A., Danese, S., Magro Dias, F. J., Rogler, G., Lakatos, P. L., Adamina, M., Ardizzone, S., Buskens, C. J., Sebastian, S., Laureti, S., Sampietro, G. M., Vucelic, B., van der Woude, C. J., Barreiro-de Acosta, M., Maaser, C., Portela, F., Vavricka, S. R., & Gomollón, F. (2016). 3rd European Evidence-based Consensus on the Diagnosis and Management of Crohn’s Disease 2016: Part 2: Surgical Management and Special Situations. Journal of Crohn’s and Colitis, 11(2), 135–149. https://doi.org/10.1093/ecco-jcc/jjw169
Gomollón, F., Dignass, A., Annese, V., Tilg, H., Van Assche, G., Lindsay, J. O., Peyrin-Biroulet, L., Cullen, G. J., Daperno, M., Kucharzik, T., Rieder, F., Almer, S., Armuzzi, A., Harbord, M., Langhorst, J., Sans, M., Chowers, Y., Fiorino, G., Juillerat, P., … Gionchetti, P. (2016). 3rd European Evidence-based Consensus on the Diagnosis and Management of Crohn’s Disease 2016: Part 1: Diagnosis and Medical Management. Journal of Crohn’s and Colitis, 11(1), 3–25. https://doi.org/10.1093/ecco-jcc/jjw168
Hernández-Sampelayo, P., Seoane, M., Oltra, L., Marín, L., Torrejón, A., Vera, M. I., García, V., Lázaro, P., Parody, E., Blasco, A. J., & Casellas, F. (2010). Contribution of nurses to the quality of care in management of inflammatory bowel disease: A synthesis of the evidence. Journal of Crohn’s and Colitis, 4(6), 611–622. https://doi.org/10.1016/j.crohns.2010.08.009
Hunter, J., Claridge, A., James, S., Chan, D., Stacey, B., Stroud, M., Patel, P., Fine, D., & Cummings, J. R. F. (2012). Improving outpatient services: the Southampton IBD virtual clinic. Postgraduate Medical Journal, 88(1042), 487–491. https://doi.org/10.1136/postgradmedj-2012-100123rep
IsHak, W. W., Pan, D., Steiner, A. J., Feldman, E., Mann, A., Mirocha, J., Danovitch, I., & Melmed, G. Y. (2017). Patient-Reported Outcomes of Quality of Life, Functioning, and GI/Psychiatric Symptom Severity in Patients with Inflammatory Bowel Disease (IBD). Inflammatory Bowel Diseases, 23(5), 798–803. https://doi.org/10.1097/mib.0000000000001060
Jackson, C. A., Clatworthy, J., Robinson, A., & Horne, R. (2010). Factors Associated With Non-Adherence to Oral Medication for Inflammatory Bowel Disease: A Systematic Review. American Journal of Gastroenterology, 105(3), 525–539. https://doi.org/10.1038/ajg.2009.685
Jelsness-Jørgensen, L.-P., Bernklev, T., Henriksen, M., Torp, R., & Moum, B. (2012). Is patient reported outcome (PRO) affected by different follow-up regimens in inflammatory bowel disease (IBD)? A one year prospective, longitudinal comparison of nurse-led versus conventional follow-up. Journal of Crohn’s and Colitis, 6(9), 887–894. https://doi.org/10.1016/j.crohns.2012.01.021
Leach, P., De Silva, M., Mountifield, R., Edwards, S., Chitti, L., Fraser, R. J. L., & Bampton, P. (2014). The effect of an inflammatory bowel disease nurse position on service delivery. Journal of Crohn’s and Colitis, 8(5), 370–374. https://doi.org/10.1016/j.crohns.2013.09.018
Lönnfors, S., Vermeire, S., Greco, M., Hommes, D., Bell, C., & Avedano, L. (2014). IBD and health-related quality of life — Discovering the true impact. Journal of Crohn’s and Colitis, 8(10), 1281–1286. https://doi.org/10.1016/j.crohns.2014.03.005
Louis, E., Dotan, I., Ghosh, S., Mlynarsky, L., Reenaers, C., & Schreiber, S. (2015). Optimising the Inflammatory Bowel Disease Unit to Improve Quality of Care: Expert Recommendations: Table 1. Journal of Crohn’s and Colitis, 9(8), 685–691. https://doi.org/10.1093/ecco-jcc/jjv085
Magro, F., Gionchetti, P., Eliakim, R., Ardizzone, S., Armuzzi, A., Barreiro-de Acosta, M., Burisch, J., Gecse, K. B., Hart, A. L., Hindryckx, P., Langner, C., Limdi, J. K., Pellino, G., Zagórowicz, E., Raine, T., Harbord, M., & Rieder, F. (2017). Third European Evidence-based Consensus on Diagnosis and Management of Ulcerative Colitis. Part 1: Definitions, Diagnosis, Extra-intestinal Manifestations, Pregnancy, Cancer Surveillance, Surgery, and Ileo-anal Pouch Disorders. Journal of Crohn’s and Colitis, 11(6), 649–670. https://doi.org/10.1093/ecco-jcc/jjx008
Mawdsley, J. E. D., Irving, P. M., Makins, R. J., & Rampton, D. S. (2006). Optimizing quality of outpatient care for patients with inflammatory bowel disease: the importance of specialist clinics. European Journal of Gastroenterology & Hepatology, 18(3), 249–253. https://doi.org/10.1097/00042737-200603000-00004
Mountifield, R., Andrews, J. M., Mikocka-Walus, A., & Bampton, P. (2014). Covert dose reduction is a distinct type of medication non-adherence observed across all care settings in Inflammatory Bowel Disease. Journal of Crohn’s and Colitis, 8(12), 1723–1729. https://doi.org/10.1016/j.crohns.2014.08.013
Mowat, C., Cole, A., Windsor, A., Ahmad, T., Arnott, I., Driscoll, R., Mitton, S., Orchard, T., Rutter, M., Younge, L., Lees, C., Ho, G., Satsangi, J., & Bloom, S. (2011). Guidelines for the management of inflammatory bowel disease in adults. Gut, 60(5), 571–607. https://doi.org/10.1136/gut.2010.224154
Nightingale, A. J., Middleton, W., Middleton, S. J., & Hunter, J. O. (2000). Evaluation of the effectiveness of a specialist nurse in the management of inflammatory bowel disease (IBD). European Journal of Gastroenterology & Hepatology, 12(9), 967–973. https://doi.org/10.1097/00042737-200012090-00001
O’Connor, M., Bager, P., Duncan, J., Gaarenstroom, J., Younge, L., Détré, P., Bredin, F., Dibley, L., Dignass, A., Gallego Barrero, M., Greveson, K., Hamzawi, M., Ipenburg, N., Keegan, D., Martinato, M., Murciano Gonzalo, F., Pino Donnay, S., Price, T., Ramirez Morros, A., … van de Woude, C. J. (2013). N-ECCO Consensus statements on the European nursing roles in caring for patients with Crohn’s disease or ulcerative colitis. Journal of Crohn’s and Colitis, 7(9), 744–764. https://doi.org/10.1016/j.crohns.2013.06.004
Sack, C., Phan, V. A., Grafton, R., Holtmann, G., van Langenberg, D. R., Brett, K., Clark, M., & Andrews, J. M. (2012). A chronic care model significantly decreases costs and healthcare utilisation in patients with inflammatory bowel disease. Journal of Crohn’s and Colitis, 6(3), 302–310. https://doi.org/10.1016/j.crohns.2011.08.019
Smith, G. D., Watson, R., Roger, D., McRorie, E., Hurst, N., Luman, W., & Palmer, K. R. (2002). Impact of a nurse-led counselling service on quality of life in patients with inflammatory bowel disease. Journal of Advanced Nursing, 38(2), 152–160. https://doi.org/10.1046/j.1365-2648.2002.02159.x