Clicca qui per scaricare

Cushing’s disease and its impact on quality of life as seen through patients’ eyes: a narrative qualitative study
Titolo Rivista: PSICOLOGIA DELLA SALUTE 
Autori/Curatori: Guendalina Graffigna, Caterina Bosio, Isabella Cecchini 
Anno di pubblicazione:  2020 Fascicolo: Lingua: Inglese 
Numero pagine:  17 P. 141-157 Dimensione file:  527 KB
DOI:  10.3280/PDS2020-002007
Il DOI è il codice a barre della proprietà intellettuale: per saperne di più:  clicca qui   qui 


Cushing disease (CD) is a rare and highly debilitating pathology. Its impact on quality of life is significant and the disease puts serious limitations on patients’ daily lives. While clinical success in the treatment of CD is measured in terms of hypercortisolism remission, it is important to remember that this should coincide with an improvement in patients’ psy-chological resilience and quality of life. The present qualitative study aims to reconstruct the psychological journey the patients embark on in living with the disease and its treatment. This study was designed according to the qualitative method of Narrative Inquiry. The pa-tients enrolled were required to keep a one-week diary on living and coping with the dis-ease. The diaries were designed to elicit the free expression of patients. After filling in their diaries for a week, patients were then interviewed face-to-face in order to deeply investigate insights emerged from the diaries’ stories. The study involved 12 CD patients. This study gives emotional images of how patients react and try to give meaning to their CD diagnosis and their disease. Particularly, according to patients’ narratives, the several physical symp-toms of CD have a tremendously negative impact on patients’ self-image and contribute to psychologically deteriorate their self-esteem and confidence. This study not only confirm previous research regarding the deep impact of CD symptoms on everyday life of patients, but they also open interesting perspectives on the psychological representations of patients regarding their symptoms and on their un met needs.

La malattia di Cushing è una patologia rara e altamente debilitante. Mentre il successo clinico nel trattamento della malattia di Cushing si misura in termini di remissione dell’ipercortisolismo, è importante ricordare che ciò dovrebbe coincidere con un migliora-mento della resilienza psicologica e della qualità della vita dei pazienti. Il presente studio qualitativo mira a ricostruire il percorso psicologico che i pazienti intraprendono nella con-vivenza con la malattia. Questo studio è stato progettato secondo il metodo qualitativo Nar-rative Inquiry. Ai pazienti intervistati è stato richiesto di compilare un diario semi strutturato per una settimana raccontando di come vivono e affrontano la malattia. Successivamente, i pazienti sono stati intervistati per indagare a fondo gli insight emersi dalle storie dei diari. Lo studio ha coinvolto 12 pazienti con malattia di Cushing. Questo studio fornisce una fo-tografia del bagaglio emotivo con cui i pazienti reagiscono e cercano di dare un senso alla loro diagnosi di malattia di Cushing e alla loro vita con la malattia. In particolare, secondo i racconti dei pazienti, i diversi sintomi fisici della malattia di Cushing hanno un impatto estremamente negativo sull’immagine di sé dei pazienti e contribuiscono a deteriorare psi-cologicamente la loro autostima e fiducia in sé stessi. Gli autori sostengono che le testimo-nianze raccolte nel presente studio, non solo confermano le precedenti evidenze riguardanti l’impatto profondo dei sintomi della malattia di Cushing sulla vita quotidiana dei pazienti, ma aprono anche interessanti prospettive sulle rappresentazioni psicologiche dei pazienti riguardo ai loro sintomi e ai loro bisogni non soddisfatti.
Keywords: Malattia di Cushing; medicina narrativa; patient engagement; esperienza del paziente; diario del paziente; qualità della vita.

  1. Arnaldi G., Angeli A., Atkinson A.B., Bertagna X., Cavagnini F., Chrousos G.P., Fava G.A., Findling J.W., Gaillard R.C., Grossman A.B., Kola B., Lacroix A., Mancini T., Mantero F., Newell-Price J., Nieman L.K., Sonino N., Vance M.L., Giustina A. and Boscaro M. (2003). Diagnosis and Complications of Cushing’s Syndrome: A Consensus Statement. The Journal of Clinical Endocrinology & Metabolism, 88 (12): 5593-5602.
  2. Badia X., Roset M., Valassi E., Franz H., Forsythe A. and Webb S.M. (2013). Mapping Cushing QOL scores to EQ-5D utility values using data from the European Registry on Cushing’s syndrome (ERCUSYN). Quality of Life Research, 22 (10): 294-2950.
  3. Barello S., Graffigna G. (2015). Patient engagement in healthcare: Pathways for effective medical decision making. Neuropsychological Trends, 17 (1): 53-65.
  4. Broersen L., Jha M., Biermasz N.R., Pereira A.M. and Dekkers O.M. (2018). Effectiveness of medical treatment for Cushing’s syndrome: a systematic review and meta-analysis. Pituitary, 21 (6): 631-641.
  5. Charon R. (2001). Narrative Medicine: A Model for Empathy, Reflection, Profession, and Trust. JAMA, 286 (15): 1897-902.
  6. Charon R. (2012). At the Membranes of Care. Academic Medicine, 87 (3): 342-347.
  7. Colao A., Boscaro M., Ferone D. and Casanueva F.F. (2014). Managing Cushing’s disease: the state of the art. Endocrine, 47 (1): 9-20.
  8. Coulter A. (2011). Engaging Patients in Healthcare. New York.: University Press.
  9. Frank A.W. (1995). The Wounded Storyteller. Chicago: University of Chicago Press.
  10. Graffigna G., Barello S., Libreri C. and Bosio C.A. (2014). How to engage type-2 diabetic patients in their own health management: Implications for clinical practice. BMC Public Health, 14 (1): 648-660., DOI: 10.1186/1471-2458-14-64
  11. Graffigna G., Barello S., Riva G. and Bosio A.C. (2014). Patient Engagement: The Key to Redesign the Exchange Between the Demand and Supply for Healthcare in the Era of Active Ageing. Studies in Health Technology and Informatics, 203: 85-95., DOI: 10.3233/978-1-61499-425-1-8
  12. Graffigna G., Barello S. and Triberti S. (2015). Patient Engagement: a consumer centered approach. Berlin: Degruyter Open.
  13. Hawn M.T., Cook D., Deveney C. and Sheppard B.C. (2002). Quality of life after laparoscopic bilateral adrenalectomy for Cushing’s disease. Surgery, 132 (6): 1064-1068.
  14. Hibbard J.H., Stockard J., Mahoney E.R. and Tusler M. (2004). Development of the Patient Activation Measure (PAM): Conceptualizing and Measuring Activation in Patients and Consumers. Health Services Research, 39 (4p1): 1005-1026.
  15. Keil M.F. (2013). Quality of life and other outcomes in children treated for Cushing syndrome. The Journal of Clinical Endocrinology and Metabolism, 98 (7): 2667-2678.
  16. Mattoo S.K., Bhansali A.K., Gupta N., Grover S. and Malhotra R. (2009). Psychosocial morbidity in Cushing disease: a study from India. Endocrine, 35: 306-311.
  17. Nankova A., Yaneva M., Elenkova A., Tcharaktchiev D., Marinov M., Hadzhiyanev A., Sechanov T., Gantchev G., Todorov G., Kirilov G., Kalinov K., Andreeva M. and Zacharieva S. (2018). Cushing’s Syndrome: A Historic Review of the Treatment Strategies and Corresponding Outcomes in a Single Tertiary Center over the Past Half-Century. Hormone and Metabolic Research, 50 (4): 280-289.
  18. Nieman L.K., Biller B.M., Findling J.W., Newell-Price J., Savage M.O., Stewart P.M. and Montori V.M. (2008). The diagnosis of Cushing’s syndrome: an Endocrine Society Clinical Practice Guideline. The Journal of Clinical Endocrinology and Metabolism, 93 (5): 1526-1540.
  19. Resmini E., Webb S.M., Santos A., Martínez-Momblán M.A. and Valassi E. (2018). Quality of life in patients with pituitary tumors. Current Opinion in Endocrine and Metabolic Research, 1: 67-73.
  20. Sharma A., Sawant N. and Shah N. (2018). A Study on Psychiatric Disorders, Body Image Disturbances, and Self-Esteem in Patients of Cushing’s Disease. Indian Journal of Endocrinology and Metabolism, 22 (4): 445-450.
  21. Smith C.P. (2000). Content Analysis and Narrative Analysis. In Reis H.T. and Judd C.M. (eds.), Handbook of Research Methods in Social and Personality Psychology (pp. 313-338). New York, NY: Cambridge University Press.
  22. Sonino N., Fallo F. and Fava G.A. (2010). Psychosomatic aspects of Cushing’s syndrome. Reviews in Endocrine and Metabolic Disorders, 11 (2): 95-104.
  23. Thompson S.K., Hayman A.V., Ludlam W.H., Deveney C.W., Loriaux D.L. and Sheppard B.C. (2007). Improved quality of life after bilateral laparoscopic adrenalectomy for Cushing’s disease: a 10-year experience. Annals of Surgery, 245 (5): 790-794.
  24. Tiemensma J., Kaptein A.A., Pereira A.M., Smit J.W., Romijn J.A. and Biermasz N.R. (2011). Negative illness perceptions are associated with impaired quality of life in patients after long-term remission of Cushing’s syndrome. European Journal of Endocrinology, 165 (4): 527-535., DOI: 10.1530/EJE-11-030
  25. Van der Klaauw A.A., Kars M., Biermasz N.R., Roelfsema F., Dekkers O.M., Corssmit E.P. van Aken M.O., Havekes B., Pereira A.M., Pijl H., Smit J.W., and Romijn J.A. (2008). Disease-specific impairments in quality of life during long-term follow-up of patients with different pituitary adenomas. Clinical Endocrinology, 69 (5): 775-784.
  26. Webb S.M., Ware J.E., Forsythe A., Yang M., Badia X., Nelson L.M., Signorovitch J.E., McLeod L., Maldonado M., Zgliczynski W., de Block C., Portocarrero-Ortiz L. and Gadelha M. (2014). Treatment effectiveness of pasireotide on health-related quality of life in patients with Cushing’s disease. European Journal of Endocrinology, 171 (1): 89-98., DOI: 10.1530/EJE-13-101



  1. Impossibile comunicare con Crossref: The remote server returned an error: (404) Not Found.

Guendalina Graffigna, Caterina Bosio, Isabella Cecchini, La malattia di Cushing e il suo impatto sulla qualità di vita attraverso gli occhi dei pazien-ti: uno studio qualitativo in "PSICOLOGIA DELLA SALUTE" 2/2020, pp. 141-157, DOI:10.3280/PDS2020-002007

   

FrancoAngeli è membro della Publishers International Linking Association associazione indipendente e no profit per facilitare l'accesso degli studiosi ai contenuti digitali nelle pubblicazioni professionali e scientifiche