Supporting complexity: the psychologist’s role in multidisciplinary management of polycystic kidney disease

Authors

  • Sara Farinone Servizio di Psicologia Clinica e della Salute, IRCCS Ospedale San Raffaele, Milano - Italy
  • Martina Catania U.O. Nefrologia e Dialisi, IRCCS Ospedale San Raffaele, Milano - Italy
  • Liliana Italia De Rosa U.O. Nefrologia e Dialisi, IRCCS Ospedale San Raffaele, Milano - Italy
  • Kristiana Kola U.O. Nefrologia e Dialisi, IRCCS Ospedale San Raffaele, Milano - Italy
  • Micaela Petrone U.O. Ostetricia e Ginecologia, IRCCS Ospedale San Raffaele, Milano - Italy
  • Matteo Brambilla Pisoni U.O. Nefrologia e Dialisi, IRCCS Ospedale San Raffaele, Milano - Italy
  • Andrea Gigliotti Università Vita-Salute San Raffaele, Milano - Italy
  • Pierpaolo Bianca Università Vita-Salute San Raffaele, Milano - Italy
  • Paola Maiucchi U.O. Nefrologia e Dialisi, IRCCS Ospedale San Raffaele, Milano - Italy
  • Lorena Citterio Unità di Genomica delle Malattie Renali e dell’Ipertensione, IRCCS Ospedale San Raffaele, Milano - Italy
  • Paola Carrera Unità di Genomica per la Diagnosi delle Malattie Umane, Divisione di Genetica e di Biologia Cellulare, IRCCS Ospedale San Raffaele, Milano - Italy
  • Giulia Mancassola Unità di Genomica per la Diagnosi delle Malattie Umane, Divisione di Genetica e di Biologia Cellulare, IRCCS Ospedale San Raffaele, Milano - Italy
  • Gaia Perego Servizio di Psicologia Clinica e della Salute, IRCCS Ospedale San Raffaele, Milano - Italy
  • Francesca Milano Dipartimento di Psicologia, Università degli Studi di Milano-Bicocca, Milano - Italy
  • Valentina Elisabetta Di Mattei Servizio di Psicologia Clinica e della Salute, IRCCS Ospedale San Raffaele, Milano - Italy
  • Paolo Manunta U.O. Nefrologia e Dialisi, IRCCS Ospedale San Raffaele, Milano - Italy
  • Giuseppe Vezzoli U.O. Nefrologia e Dialisi, IRCCS Ospedale San Raffaele, Milano - Italy
  • Maria Teresa Sciarrone Alibrandi U.O. Nefrologia e Dialisi, IRCCS Ospedale San Raffaele, Milano - Italy

DOI:

https://doi.org/10.33393/gcnd.2024.3065

Keywords:

ADPKD, Patient’s support, Autosomal Dominant Polycystic Kidney Disease, Psychological impact

Abstract

Autosomal dominant polycystic kidney disease (ADPKD) is the most common genetic kidney disease. It is characterized by the formation of cysts in kidneys. This condition has a significant impact on people’s lives. It causes not only physical suffering but also psychological suffering. People with ADPKD may experience psychological distress, depending on their personal and health conditions. The inability to accept or adapt to the disease and its resulting changes causes individuals difficulties that appear in different levels of their lives: intrapersonal, interpersonal, social, and occupational.

In the context of ADPKD, the psychologist is involved both at clinical and research levels. The psychologist has a crucial role in supporting patients by assessing how they react to the disease, to its related limitations, and to the resulting disabilities.

The proposal of psychological support, considered as an intervention instrument, is helpful both at the diagnostic stage and in follow-up, as the disease worsens. The support aims to encourage acceptance and adaptation to the disease, process changes, and physical and mental consequences.

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References

Johansen KL, Chertow GM, Foley RN, et al. US renal data system 2020 annual data report: epidemiology of kidney disease in the United States. Am J Kidney Dis. 2021;77(4)(suppl 1):A7-A8. https://doi.org/10.1053/j.ajkd.2021.01.002 PMID:33752804

Gansevoort RT, Arici M, Benzing T, et al. Recommendations for the use of tolvaptan in autosomal dominant polycystic kidney disease: a position statement on behalf of the ERA-EDTA Working Groups on Inherited Kidney Disorders and European Renal Best Practice. Nephrol Dial Transplant. 2016;31(3):337-348. https://doi.org/10.1093/ndt/gfv456 PMID:26908832

Barnawi RA, Attar RZ, Alfaer SS, Safdar OY. Is the light at the end of the tunnel nigh? A review of ADPKD focusing on the burden of disease and tolvaptan as a new treatment. Int J Nephrol Renovasc Dis. 2018;11:53-67. https://doi.org/10.2147/IJNRD.S136359 PMID:29440922

Bergmann C, Guay-Woodford LM, Harris PC, Horie S, Peters DJM, Torres VE. Polycystic kidney disease. Nat Rev Dis Primers. 2018;4(1):50. https://doi.org/10.1038/s41572-018-0047-y PMID:30523303

Neijenhuis MK, Kievit W, Perrone RD, et al. The effect of disease severity markers on quality of life in autosomal dominant polycystic kidney disease: a systematic review, meta-analysis and meta-regression. BMC Nephrol. 2017;18(1):169. https://doi.org/10.1186/s12882-017-0578-6 PMID:28545401

Pérez Domínguez TS, Rodríguez Pérez A, Buset Ríos N, et al; Grupo de Investigación Hiricare. Psychonephrology: psychological aspects in autosomal dominant polycystic kidney disease. Nefrologia. 2011;31(6):716-722. English Edition. PMID:22130288

Bonino S. Psicologia per la salute. Ambrosiana Milano; 1988.

Delli Zotti GB, Sangiovanni E, Brioni E, et al. [Psychological Assessment of a sample of women with ADPKD: quality of life, body image, anxiety and depression]. G Ital Nefrol. 2019;36(2):2019-vol2. PMID:30983181

Simms RJ, Thong KM, Dworschak GC, Ong AC. Increased psychosocial risk, depression and reduced quality of life living with autosomal dominant polycystic kidney disease. Nephrol Dial Transplant. 2016;31(7):1130-1140. https://doi.org/10.1093/ndt/gfv299 PMID:26268712

Yarlioglu AM, Oguz EG, Gundogmus AG, Atilgan KG, Sahin H, Ayli MD. The relationship between depression, anxiety, quality of life levels, and the chronic kidney disease stage in the autosomal dominant polycystic kidney disease. Int Urol Nephrol. 2023;55(4):983-992. https://doi.org/10.1007/s11255-022-03375-2 PMID:36184721

Baker A, King D, Marsh J, et al. Understanding the physical and emotional impact of early-stage ADPKD: experiences and perspectives of patients and physicians. Clin Kidney J. 2015;8(5):531-537. https://doi.org/10.1093/ckj/sfv060 PMID:26413277

Lewis H, Arber S. The role of the body in end-stage kidney disease in young adults: Gender, peer and intimate relationships. Chronic Illn. 2015;11(3):184-197. https://doi.org/10.1177/1742395314566823 PMID:25589149

Chapman AB, Devuyst O, Eckardt KU, et al; Conference Participants. Autosomal-dominant polycystic kidney disease (ADPKD): executive summary from a Kidney Disease: Improving Global Outcomes (KDIGO) Controversies Conference. Kidney Int. 2015;88(1):17-27. https://doi.org/10.1038/ki.2015.59 PMID:25786098

Evans RW, Manninen DL, Garrison LP Jr, et al. The quality of life of patients with end-stage renal disease. N Engl J Med. 1985;312(9):553-559. https://doi.org/10.1056/NEJM198502283120905 PMID:3918267

Boaretti C, Trabucco T, Rugiu C, et al. Rapporti tra adattamento, qualità di vita e supporto familiare, sociale nel paziente in trattamento dialitico. G Ital Nefrol. 2006;23(4):415-423. PMID:17063442

Strepparava, MG. La qualità della vita nel malato in dialisi. Giornale di Tecniche Nefrologiche e Dialitiche. 2003;15:11-17.

Trabucco G, Magagnotti MG. Emodialisi e Bisogni Psicologici. Un modello integrato di risposta assistenziale. Napoli: EdiSES, 2015; 27-54.

De Pasquale C, Pistorio ML, Veroux M, et al. Psychological and psychopathological aspects of kidney transplantation: a systematic review. Front Psychiatry. 2020;11:106. https://doi.org/10.3389/fpsyt.2020.00106 PMID:32194453

Oliveira AP, Schmidt DB, Amatneeks TM, Santos JC, Cavallet LH, Michel RB. Quality of life in hemodialysis patients and the relationship with mortality, hospitalizations and poor treatment adherence. J Bras Nefrol. 2016 Dec;38(4):411-420. https://doi.org/10.5935/0101-2800.20160066 PMID:28001183

Assal JP. Revisiting the approach to treatment of long-term illness: from the acute to the chronic state. A need for educational and managerial skills for long-term follow-up. Patient Educ Couns. 1999;37(2):99-111. https://doi.org/10.1016/S0738-3991(98)00109-8 PMID:14528538

Ripamonti CA, Clerici CA. Psicologia e salute, introduzione alla psicologia clinica in ambito sanitario. Il Mulino; 2008.

Monica RM, Delli Zotti GB, Spotti D, Sarno L. L'inserimento della figura dello psicologo all'interno dell'Unità Operativa di Nefrologia-Dialisi-Ipertensione. G Ital Nefrol. 2014 Sep-Oct;31(5):gin/31.5.8. Italian. PMID: 25315726.

Vito A. Psicologi in ospedale, percorsi operativi per la cura globale di persone. Milano. FrancoAngeli; 2014.

De Isabella G, Colombi S, Fiocchi E, Reatto L. La psicologia nelle Aziende Ospedaliere e negli IRCCS. Milano. Centro Scientifico Editore. 2003

De Berardinis D, Ragni Raimondi D. I percorsi della salute. Verso un intervento co-costruito Medici-Psicologi. Roma. Alpes Italia. 2009.

Published

2024-04-30

How to Cite

Farinone, S., Catania, M., De Rosa, L. I., Kola, K., Petrone, M., Brambilla Pisoni, M., Gigliotti, A., Bianca, P., Maiucchi, P., Citterio, L., Carrera, P., Mancassola, G., Perego, G., Milano, F., Di Mattei, V. E., Manunta, P., Vezzoli, G., & Sciarrone Alibrandi, M. T. (2024). Supporting complexity: the psychologist’s role in multidisciplinary management of polycystic kidney disease. Giornale Di Clinica Nefrologica E Dialisi, 36(1), 36–40. https://doi.org/10.33393/gcnd.2024.3065

Issue

Section

Polycystic kidney disease - In collaboration with AIRP

Categories

Received 2024-03-14
Accepted 2024-03-19
Published 2024-04-30

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