European ADPKD Forum multidisciplinary position statement on autosomal dominant polycystic kidney disease care: European ADPKD Forum and Multispecialist Roundtable participants

Tess Harris, Richard Sandford, Brenda De Coninck, Olivier Devuyst, Joost P.H. Drenth, Tevfik Ecder, Alastair Kent, Ron T. Gansevoort, Joś Luis Górriz, Albert C.M. Ong, Yves Pirson, Vicente Torres, Klemens Budde, Denis Cĺment, Lorenzo E. Derchi, Marianna Eleftheroudi, Elena Levtchenko, Dorien Peters, Hendrik Van Poppel, Raymond Vanholder

Research output: Contribution to journalArticle

11 Citations (Scopus)

Abstract

Autosomal dominant polycystic kidney disease (ADPKD) is a chronic, progressive condition characterized by the development and growth of cysts in the kidneys and other organs and by additional systemic manifestations. Individuals with ADPKD should have access to lifelong, multidisciplinary, specialist and patient-centred care involving: (i) a holistic and comprehensive assessment of the manifestations, complications, prognosis and impact of the disease (in physical, psychological and social terms) on the patient and their family; (ii) access to treatment to relieve symptoms, manage complications, preserve kidney function, lower the risk of cardiovascular disease and maintain quality of life; and (iii) information and support to help patients and their families act as fully informed and active partners in care, i.e. to maintain self-management approaches, deal with the impact of the condition and participate in decision-making regarding healthcare policies, services and research. Building on discussions at an international roundtable of specialists and patient advocates involved in ADPKD care, this article sets out (i) the principles for a patient-centred, holistic approach to the organization and delivery of ADPKD care in practice, with a focus on multispecialist collaboration and shared-decision making, and (ii) the rationale and knowledge base for a route map for ADPKD care intended to help patients navigate the services available to them and to help stakeholders and decision-makers take practical steps to ensure that all patients with ADPKD can access the comprehensive multispecialist care to which they are entitled. Further multispecialty collaboration is encouraged to design and implement these services, and to work with patient organizations to promote awareness building, education and research.

Original languageEnglish (US)
Pages (from-to)563-573
Number of pages11
JournalNephrology Dialysis Transplantation
Volume33
Issue number4
DOIs
StatePublished - Apr 1 2018

Fingerprint

Autosomal Dominant Polycystic Kidney
Decision Making
Organizations
Kidney
Patient-Centered Care
Knowledge Bases
Self Care
Growth and Development
Research
Cysts
Cardiovascular Diseases
Quality of Life
Psychology
Delivery of Health Care
Education

Keywords

  • ADPKD
  • CKD
  • clinical practice
  • multispecialist care
  • polycystic kidney disease

ASJC Scopus subject areas

  • Nephrology
  • Transplantation

Cite this

European ADPKD Forum multidisciplinary position statement on autosomal dominant polycystic kidney disease care : European ADPKD Forum and Multispecialist Roundtable participants. / Harris, Tess; Sandford, Richard; De Coninck, Brenda; Devuyst, Olivier; Drenth, Joost P.H.; Ecder, Tevfik; Kent, Alastair; Gansevoort, Ron T.; Górriz, Joś Luis; Ong, Albert C.M.; Pirson, Yves; Torres, Vicente; Budde, Klemens; Cĺment, Denis; Derchi, Lorenzo E.; Eleftheroudi, Marianna; Levtchenko, Elena; Peters, Dorien; Van Poppel, Hendrik; Vanholder, Raymond.

In: Nephrology Dialysis Transplantation, Vol. 33, No. 4, 01.04.2018, p. 563-573.

Research output: Contribution to journalArticle

Harris, T, Sandford, R, De Coninck, B, Devuyst, O, Drenth, JPH, Ecder, T, Kent, A, Gansevoort, RT, Górriz, JL, Ong, ACM, Pirson, Y, Torres, V, Budde, K, Cĺment, D, Derchi, LE, Eleftheroudi, M, Levtchenko, E, Peters, D, Van Poppel, H & Vanholder, R 2018, 'European ADPKD Forum multidisciplinary position statement on autosomal dominant polycystic kidney disease care: European ADPKD Forum and Multispecialist Roundtable participants', Nephrology Dialysis Transplantation, vol. 33, no. 4, pp. 563-573. https://doi.org/10.1093/ndt/gfx327
Harris, Tess ; Sandford, Richard ; De Coninck, Brenda ; Devuyst, Olivier ; Drenth, Joost P.H. ; Ecder, Tevfik ; Kent, Alastair ; Gansevoort, Ron T. ; Górriz, Joś Luis ; Ong, Albert C.M. ; Pirson, Yves ; Torres, Vicente ; Budde, Klemens ; Cĺment, Denis ; Derchi, Lorenzo E. ; Eleftheroudi, Marianna ; Levtchenko, Elena ; Peters, Dorien ; Van Poppel, Hendrik ; Vanholder, Raymond. / European ADPKD Forum multidisciplinary position statement on autosomal dominant polycystic kidney disease care : European ADPKD Forum and Multispecialist Roundtable participants. In: Nephrology Dialysis Transplantation. 2018 ; Vol. 33, No. 4. pp. 563-573.
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