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Kwaliteitsstandaard AL-Amyloïdose
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Literatuur

  • Advies- en expertgroep, Kwaliteitsstandaarden, and (AQUA) (2014). Leidraad voor kwaliteitsstandaarden v.1.
  • Agency for Healthcare and Research Quality (AHRQ) (2012). Stem cell transplantation in primary systemic amyloidosis.
  • Bayliss, M., McCausland, K.L., Guthrie, S.D., and White, M.K. (2017). The burden of amyloid light chain amyloidosis on health-related quality of life. Orphanet J. Rare Dis. 12, 15.
  • Bergenthal, N., Will, A., Streckmann, F., Wolkewitz, K.-D., Monsef, I., Engert, A., Elter, T., and Skoetz, N. (2014). Aerobic physical exercise for adult patients with haematological malignancies. Cochrane Database Syst. Rev. CD009075.
  • Caccialanza, R., Palladini, G., Klersy, C., Cereda, E., Bonardi, C., Cameletti, B., Montagna, E., Russo, P., Foli, A., Milani, P., et al. (2012). Nutritional status independently affects quality of life of patients with systemic immunoglobulin light-chain (AL) amyloidosis. Ann. Hematol. 91, 399–406.
  • Caccialanza, R., Palladini, G., Klersy, C., Cereda, E., Bonardi, C., Cameletti, B., Quarleri, L., Montagna, E., Foli, A., Milani, P., et al. (2014). Malnutrition at diagnosis predicts mortality in patients with systemic immunoglobulin light-chain amyloidosis independently of cardiac stage and response to treatment. JPEN J. Parenter. Enteral Nutr. 38, 891–894.
  • Caccialanza, R., Palladini, G., Cereda, E., Bonardi, C., Milani, P., Cameletti, B., Quarleri, L., Cappello, S., Foli, A., Lavatelli, F., et al. (2015). Nutritional counseling improves quality of life and preserves body weight in systemic immunoglobulin light-chain (AL) amyloidosis. Nutr. Burbank Los Angel. Cty. Calif 31, 1228–1234.
  • Castel, P., Négrier, S., Boissel, J.-P., and Plateforme d’Aide à la Recherche Clinique en Cancérologie de la région Rhône-Alpes (2006). Why don’t cancer patients enter clinical trials? A review. Eur. J. Cancer Oxf. Engl. 1990 42, 1744–1748.
  • CBO (2013). Zorgmodule Palliatieve Zorg 1.0.
  • Chaulagain, C.P., and Comenzo, R.L. (2013). New insights and modern treatment of AL amyloidosis. Curr. Hematol. Malig. Rep. 8, 291–298.
  • Chaulagain, C.P., and Comenzo, R.L. (2015). How we treat systemic light-chain amyloidosis. Clin. Adv. Hematol. Oncol. HO 13, 315–324.
  • D’Agnolo, H.M., Kievit, W., Andrade, R.J., Karlsen, T.H., Wedemeyer, H., and Drenth, J.P. (2016). Creating an effective clinical registry for rare diseases. United Eur. Gastroenterol. J. 4, 333–338.
  • Desport, E., Bridoux, F., Sirac, C., Delbes, S., Bender, S., Fernandez, B., Quellard, N., Lacombe, C., Goujon, J.-M., Lavergne, D., et al. (2012). AL Amyloidosis. Orphanet J. Rare Dis. 7, 54.
  • Dispenzieri, A., Kyle, R., Merlini, G., Miguel, J.S., Ludwig, H., Hajek, R., Palumbo, A., Jagannath, S., Blade, J., Lonial, S., et al. (2009). International Myeloma Working Group guidelines for serum-free light chain analysis in multiple myeloma and related disorders. Leukemia 23, 215–224.
  • D’Souza, A., Dispenzieri, A., Wirk, B., Zhang, M.-J., Huang, J., Gertz, M.A., Kyle, R.A., Kumar, S., Comenzo, R.L., Peter Gale, R., et al. (2015). Improved Outcomes After Autologous Hematopoietic Cell Transplantation for Light Chain Amyloidosis: A Center for International Blood and Marrow Transplant Research Study. J. Clin. Oncol. Off. J. Am. Soc. Clin. Oncol. 33, 3741–3749.
  • Finn, K.T., Fennessey, S., Shelton, A.C., Brauneis, D., Teschner, T., Quillen, K., Sloan, J.M., Renteria, A.S., Seldin, D.C., and Sanchorawala, V. (2014). A Multidisciplinary Team Approach for Diagnosis and Treatment of Patients with AL Amyloidosis. Biol. Blood Marrow Transplant. 20, S160.
  • Gillmore, J.D., Wechalekar, A., Bird, J., Cavenagh, J., Hawkins, S., Kazmi, M., Lachmann, H.J., Hawkins, P.N., Pratt, G., and BCSH Committee (2015). Guidelines on the diagnosis and investigation of AL amyloidosis. Br. J. Haematol. 168, 207–218.
  • Hazenberg, B.P.C. (2013). Amyloidosis: a clinical overview. Rheum. Dis. Clin. North Am. 39, 323–345.
  • Integraal kankercentrum Nederland (2012). Handreiking slecht-nieuwsgesprek. Versie 1.0.
  • Jenkins, V., Farewell, D., Batt, L., Maughan, T., Branston, L., Langridge, C., Parlour, L., Farewell, V., and Fallowfield, L. (2010). The attitudes of 1066 patients with cancer towards participation in randomised clinical trials. Br. J. Cancer 103, 1801–1807.
  • Kastritis, E., and Dimopoulos, M.A. (2016). Recent advances in the management of AL Amyloidosis. Br. J. Haematol. 172, 170–186.
  • KNMG (2005). Algemene competenties van de medisch specialist.
  • KNMG (2013). Gedragsregels voor artsen. Versie 3.1.
  • KNMG, V&VN, KNOV, KNGF, KNMP, NIP, NVZ, NFU, GGZ Nederland, NPCF (2010). Handreiking  Verantwoordelijkheidsverdeling bij  samenwerking in de zorg.
  • KNMG, V&VN, NAPA (2012). Handreiking implementatie taakherschikking.
  • Lin, H.M., Gao, X., Cooke, C.E., Berg, D., Labotka, R., Faller, D.V., Seal, B., and Hari, P. (2017). Disease burden of systemic light-chain (AL) amyloidosis: a systematic literature review. Curr. Med. Res. Opin. 1–34.
  • Linke, R.P., Oos, R., Wiegel, N.M., and Nathrath, W.B.J. (2006). Classification of amyloidosis: misdiagnosing by way of incomplete immunohistochemistry and how to prevent it. Acta Histochem. 108, 197–208.
  • Lousada, I., Comenzo, R.L., Landau, H., Guthrie, S., and Merlini, G. (2015). Light Chain Amyloidosis: Patient Experience Survey from the Amyloidosis Research Consortium. Adv. Ther. 32, 920–928.
  • McGowan, N. (2006). What’s wrong with this patient? Primary systemic amyloidosis. RN 69, 37–40.
  • Merlini, G., Seldin, D.C., and Gertz, M.A. (2011). Amyloidosis: pathogenesis and new therapeutic options. J. Clin. Oncol. Off. J. Am. Soc. Clin. Oncol. 29, 1924–1933.
  • Minnema, M.C., Hazenberg, B.P.C., Croockewit, A., Zweegman, S., Kersten, M.J., Sonneveld, P., Von dem Borne, P.A., Bos, G., van de Waal, E., Vellenga, E., et al. (2013). De behandeling van AL-amyloïdose  in Nederland anno 2013. 5.
  • MOVIR (2015). Onderzoeksresultaten ondersteuning samenwerking medisch specialisten.
  • Muchtar, E., Buadi, F.K., Dispenzieri, A., and Gertz, M.A. (2016). Immunoglobulin Light-Chain Amyloidosis: From Basics to New Developments in Diagnosis, Prognosis and Therapy. Acta Haematol. 135, 172–190.
  • Muchtar, E., Gertz, M.A., Kumar, S.K., Lacy, M.Q., Dingli, D., Buadi, F.K., Grogan, M., Hayman, S.R., Kapoor, P., Leung, N., et al. (2017). Improved outcomes for newly diagnosed AL amyloidosis over the years 2000-2014: cracking the glass ceiling of early death. Blood.
  • Nienhuis, H.L.A., Bijzet, J., and Hazenberg, B.P.C. (2016). The Prevalence and Management of Systemic Amyloidosis in Western Countries. Kidney Dis. Basel Switz. 2, 10–19.
  • Orde van Medisch Specialisten (2013). Optimaal functioneren van medisch specialisten. Visiedocument van de Orde van Medisch Specialisten en Wetenschappelijke Verenigingen.
  • Orphanet Europe (2016). Rare Disease Registries in Europe.
  • Palladini, G., and Merlini, G. (2013). Systemic amyloidoses: what an internist should know. Eur. J. Intern. Med. 24, 729–739.
  • Palladini, G., and Merlini, G. (2016). What is new in diagnosis and management of light chain amyloidosis? Blood 128, 159–168.
  • Palladini, G., Sachchithanantham, S., Milani, P., Gillmore, J., Foli, A., Lachmann, H., Basset, M., Hawkins, P., Merlini, G., and Wechalekar, A.D. (2015). A European collaborative study of cyclophosphamide, bortezomib, and dexamethasone in upfront treatment of systemic AL amyloidosis. Blood 126, 612–615.
  • Pepys, M.B. (2006). Amyloidosis. Annu. Rev. Med. 57, 223–241.
  • Picken, M.M. (2013). Modern approaches to the treatment of amyloidosis: the critical importance of early detection in surgical pathology. Adv. Anat. Pathol. 20, 424–439.
  • Pinney, J.H., Smith, C.J., Taube, J.B., Lachmann, H.J., Venner, C.P., Gibbs, S.D.J., Dungu, J., Banypersad, S.M., Wechalekar, A.D., Whelan, C.J., et al. (2013). Systemic amyloidosis in England: an epidemiological study. Br. J. Haematol. 161, 525–532.
  • Platform PAZORI, and IKNL (2017). Algemene principes van palliatieve zorg.
  • Programma Kwaliteit in Zicht (2011a). Basisset Kwaliteitscriteria (versie 2.0).
  • Programma Kwaliteit in Zicht (2011b). Handleiding behorend bij  Basisset Kwaliteitscriteria v.2.0.
  • Raje, N., Faiman, B., Harvey, R.D., Kurtin, S.E., Lonial, S., Kumar, S.K., Cohen, A.D., Conde, M.A., Giralt, S.A., Recine, M.S., et al. (2014). Identifying professional education gaps and barriers in multiple myeloma patient care: findings of the Managing Myeloma Continuing Educational Initiative Advisory Committee. Clin. Lymphoma Myeloma Leuk. 14, 356–369.
  • Rodwell, C., and Aymé, S. (2015). Rare disease policies to improve care for patients in Europe. Biochim. Biophys. Acta BBA - Mol. Basis Dis. 1852, 2329–2335.
  • Rosenzweig, M., and Landau, H. (2011). Light chain (AL) amyloidosis: update on diagnosis and management. J. Hematol. Oncol.J Hematol Oncol 4, 47.
  • Roy, A., and Roy, V. (2006). Primary systemic amyloidosis. Early diagnosis and therapy can improve survival rates and quality of life. Postgrad. Med. 119, 93–99.
  • Satoskar, A.A., Burdge, K., Cowden, D.J., Nadasdy, G.M., Hebert, L.A., and Nadasdy, T. (2007). Typing of amyloidosis in renal biopsies: diagnostic pitfalls. Arch. Pathol. Lab. Med. 131, 917–922.
  • Sattianayagam, P.T., Lane, T., Fox, Z., Petrie, A., Gibbs, S.D.J., Pinney, J.H., Risom, S.S., Rowczenio, D.M., Wechalekar, A.D., Lachmann, H.J., et al. (2013). A prospective study of nutritional status in immunoglobulin light chain amyloidosis. Haematologica 98, 136–140.
  • Schönland, S.O., Hegenbart, U., Bochtler, T., Mangatter, A., Hansberg, M., Ho, A.D., Lohse, P., and Röcken, C. (2012). Immunohistochemistry in the classification of systemic forms of amyloidosis: a systematic investigation of 117 patients. Blood 119, 488–493.
  • Sipe, J.D., Benson, M.D., Buxbaum, J.N., Ikeda, S., Merlini, G., Saraiva, M.J.M., and Westermark, P. (2014). Nomenclature 2014: Amyloid fibril proteins and clinical classification of the amyloidosis. Amyloid Int. J. Exp. Clin. Investig. Off. J. Int. Soc. Amyloidosis 21, 221–224.
  • Smorti, M., Cappelli, F., Guarnieri, S., Bergesio, F., and Perfetto, F. (2014). Depression and cardiac symptoms among AL amyloidosis patients: the mediating role of coping strategies. Psychol. Health Med. 19, 263–272.
  • Stichting Hemato-Oncologie voor Volwassenen Nederland (2013). Echelon classification. HOVON policy paper.
  • Verpleegkundigen & Verzorgenden 2020 (2012). Beroepsprofiel verpleegkundig specialist.
  • VSOP (2016). Informatie voor de huisarts over Amyloïdose.
  • Weber, N., Mollee, P., Augustson, B., Brown, R., Catley, L., Gibson, J., Harrison, S., Ho, P.J., Horvath, N., Jaksic, W., et al. (2015). Management of systemic AL amyloidosis: recommendations of the Myeloma Foundation of Australia Medical and Scientific Advisory Group. Intern. Med. J. 45, 371–382.
  • Wechalekar, A.D., Gillmore, J.D., Bird, J., Cavenagh, J., Hawkins, S., Kazmi, M., Lachmann, H.J., Hawkins, P.N., Pratt, G., and BCSH Committee (2015). Guidelines on the management of AL amyloidosis. Br. J. Haematol. 168, 186–206.
  • ZonMW (2013). Nationaal Plan Zeldzame Ziekten (Den Haag).


 

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