Choosing to live with home dialysis-patients' experiences and potential for telemedicine support: a qualitative study

BMC Nephrology

Markus Rumpsfeld²  Elin Johnsen¹  Eli Arild¹  Ellen Rygh¹ 

[1] Norwegian Centre for Integrated Care and Telemedicine, University Hospital of North Norway, PO Box 35, N-9038 Tromsø, Norway;Division of Internal Medicine, University Hospital of North Norway, PO Box 100, N-9038 Tromsø, Norway

关键词: Self-management;    Patient empowerment;    Chronic care model;    Telemedicine;    Fellow patients;    Modality selection;    Home dialysis;   

Others  :  1083200
DOI  :  10.1186/1471-2369-13-13

 received in 2011-06-09, accepted in 2012-03-19,  发布年份 2012

【 摘 要 】

Background

This study examines the patients' need for information and guidance in the selection of dialysis modality, and in establishing and practicing home dialysis. The study focuses on patients' experiences living with home dialysis, how they master the treatment, and their views on how to optimize communication with health services and the potential of telemedicine.

Methods

We used an inductive research strategy and conducted semi-structured interviews with eleven patients established in home dialysis. Our focus was the patients' experiences with home dialysis, and our theoretical reference was patients' empowerment through telemedicine solutions. Three informants had home haemodialysis (HHD); eight had peritoneal dialysis (PD), of which three had automated peritoneal dialysis (APD); and five had continuous ambulatory peritoneal dialysis (CAPD). The material comprises all PD-patients in the catchment area capable of being interviewed, and all known HHD-users in Norway at that time.

Results

All of the interviewees were satisfied with their choice of home dialysis, and many experienced a normalization of daily life, less dominated by disease. They exhibited considerable self-management skills and did not perceive themselves as ill, but still required very close contact with the hospital staff for communication and follow-up. When choosing a dialysis modality, other patients' experiences were often more influential than advice from specialists. Information concerning the possibility of having HHD, including knowledge of how to access it, was not easily available. Especially those with dialysis machines, both APD and HHD, saw a potential for telemedicine solutions.

Conclusions

As home dialysis may contribute to a normalization of life less dominated by disease, the treatment should be organized so that the potential for home dialysis can be fully exploited. Pre-dialysis information should be unbiased and include access to other patients' experiences. Telemedicine may potentially facilitate a communication-based follow-up and improve safety within the home setting, making it easier to choose and live with home dialysis.

【 授权许可】

   
2012 Rygh et al; licensee BioMed Central Ltd.

【 参考文献 】

• [1]Wuerth DB, Finkelstein SH, Schwetz O, Carey H, Kliger AS, Finkelstein FO: Patients' descriptions of specific factors leading to modality selection of chronic peritoneal dialysis or hemodialysis. Perit Dial Int 2002, 22(2):184-190.
• [2]Lee A, Gudex C, Povlsen JV, Bonnevie B, Nielsen CP: Patients' views regarding choice of dialysis modality. Nephrol Dial Transplant 2008, 23(12):3953-3959.
• [3]U.S. Renal Data System: [http://www.usrds.org/adr.aspx] webciteUSRDS 2011 Annual Data Report: Atlas of Chronic Kidney Disease and End-Stage Renal Disease in the United States, National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases. Bethesda, MD; 2009. [Publications based upon USRDS data reported here must include this citation and the following notice: The data reported here have been supplied by the United States Renal Data System (USRDS). The interpretation and reporting of these data are the responsibility of the author(s) and in no way should be seen as an official policy or interpretation of the U.S. government]
• [4]The Norwegian Renal Registry: [http://www.nephro.no/nnr.html] webciteAnnual Report.
• [5]Paulsen D, Rumpsfeld M, Laplante S: Incresing the use of peritoneal dialysis can generate significant savings to the Norwegian Health Care system, Poster. [http:/ / www.postersessiononline.com/ 173580348_eu/ congresos/ 47era/ aula/ -Sa_187_47era.pdf] webciteERA-EDTA Munich, Germany; 2010.
• [6]Heaf JG, Lokkegaard H, Madsen M: Initial survival advantage of peritoneal dialysis relative to haemodialysis. Nephrol Dial Transplant 2002, 17(1):112-1.
• [7]Sosial- og helsedirektoratet. Antall dialysepasienter i Norge øker. Hvordan møte denne utviklingen best mulig i årene fremover? Rapport fra arbeidsgruppe nedsatt 01/12/06. Oslo; 2006. [The Norwegian Directorate of Health. The number of dialysis patients in Norway increases. How to meet this trend the best way in the years ahead? Report from the working group appointed 01/12/2006.]
• [8]Holdaas H, Westlie L: En renessanse for hjemmehemodialyse? Leder. Tidsskr Nor Laegeforen 2006, 126:2785. Norwegian [A renaissance for home haemodialysis? Editorial]
• [9]MacGregor MS, Agar JWM, Blagg CR: Home haemodialysis-international trends and variation. Nephrol Dial Transplant 2006, 21(7):1934-1945.
• [10]Pierratos A, McFarlane P, Chan C, Kwok S, Nesrallah G: Daily haemodialysis 2006. State of the art. Minerva Urol Nefrol 2006, 58(2):99-115.
• [11]Mowatt G, Vale L, MacLeod A: Systematic review of the effectiveness of home versus hospital or satellite unit haemodialysis for people with end-stage renal failure. Int J Tech Assess Health Care 2004, 20:258-268.
• [12]Field MJ (Ed): Telemedicine: A Guide to Assessing Telecommunications in Health Care. Washington DC: National Academy Press; 1996.
• [13]Rumpsfeld M, Arild E, Norum J, Breivik E: Telemedicine in haemodialysis: a university department and two remote satellites linked together as one common workplace. J Telemed Telecare 2005, 11(5):251-255.
• [14]Gallar P, Gutierrez M, Ortega O, Rodríguez I, Oliet A, Herrero JC, Mon C, Ortiz M, Molina A, Vigil A: Telemedicine and follow up of peritoneal dialysis patients. Nefrologia 2006, 26(3):365-371.
• [15]Gallar P, Vigil A, Rodriguez I, Ortega O, Gutierrez M, Hurtado J, Oliet A, Ortiz M, Mon C, Herrero JC, Lentisco C: Two-year experience with telemedicine in the follow-up of patients in home peritoneal dialysis. J Telemed Telecare 2007, 13(6):288-292.
• [16]Edefonti A, Boccola S, Picca M, Paglialonga F, Ardissino G, Marra G, Ghio L, Parisotto MT: Treatment data during pediatric home peritoneal teledialysis. Pediatr Nephrol 2003, 18(6):560-564.
• [17]Nakamoto H: Telemedicine system for patients on continuous ambulatory peritoneal dialysis. Perit Dial Int 2007, 27(Suppl 2):21-26.
• [18]Kooistra MP: Frequent prolonged home haemodialysis: three old concepts, one modern solution. Editorial Comments. Nephrol Dial Transplant 2003, 18(1):16-18.
• [19]Hoy C: Remote monitoring in nocturnal home haemodialysis 2003. Hemodial Int 2004, 8(2):144-150.
• [20]Blaikie N: Approaches to Social Enquiry Advancing Knowledge. 2nd edition. Cambridge, UK; Malden, USA; 2007. Polity Press
• [21]Wagner EH, Bennet SM, Austin BT, Greene SM, Schaefer JK, Vonkorff M: Finding common ground: patient-centeredness and evidence-based chronic illness care. J Altern Complement Med 2005, 11(Suppl 1):7-15.
• [22]Malterud K: Qualitative research: standards, challenges, and guidelines. The Lancet 2001, 358(9280):483-488.
• [23]Murray MA, Brunier G, Chung JO, Craig LA, Mills C, Thomas A, Stacey D: A systematic review of factors influencing decision-making in adults living with chronic kidney disease. Patient Educ Couns 2009, 76(2):149-158.
• [24]Moss AH: Revised dialysis clinical practice guideline promotes more informed decision-making. Clin J Am Soc Nephrol 2010, 5(12):2380-2383.
• [25]Covic A, Bammens B, Lobbedez T, Liviu S, Heimbürger O, van Biesen W, Fouque D, Vanholder R: Educating end-stage renal disease patients on dialysis modality selection: a clinical advice from the European Renal Best Practice (ERBP) Advisory Board. NDT Plus 2010. Advanced Access April 20
• [26]Album D: Nære fremmede. Pasientkulturen i sykehus. Tano Aschehoug, Oslo; 1996. Norwegian. [Close Strangers. The patient culture in hospitals]
• [27]Winterbottom AE, Bekker HL, Conner M, Mooney AE: Patient stories about their dialysis experience biases others' choices regardless of doctor's advice: an experimental study. Nephrol Dial Transplant 2011, in press. [Epub ahead of print]
• [28]White S, Vinet A: Partnering with patients to improve peritonitis rates. Adv Perit Dial 2009, 25:99-102.
• [29]Wagner EH, Austin BT, Davis C, Hindmarsh M, Schaefer JK, Bonomi A: Improving chronic illness care: translating evidence into action. Health aff 2001, 20(6):64-78.
• [30]Tsai AC, Morton SC, Mangione CM, Keeler EB: A meta-analysis of interventions to improve care for chronic illnesses. Am J Manag Care 2005, 11(8):478-488.
• [31]Frølich A, Strandberg-Larsen M, Schiøtz ML: The Chronic Care Model-A new approach in DK. [http:/ / www.hpm.org/ en/ Surveys/ University_of_Southern_Denmark_-_De nmark/ 11/ The_Chronic_Care_Model_-_A_new__app roach_in_DK.html ] webciteOdense: University of Southern Denmark; 2008. Health Policy Monitor. Survey no:11
• [32]Hibbard JH: Moving toward a more patient-centered health care delivery system. Health Aff (Millwood) 2004, Suppl Web Exclusives:VAR 133-5.
• [33]Johnsen E, Burkow T, Vognild LK: Digitalt pasientfellesskap som sosial ressurs og tilfredse pasienter som sosiologisk problem. In Digitale pasienter [Digital patients]. Edited by Tjora A, Sandaunet AG. Gyldendal Akademisk, Oslo; 2010:163-80. Norwegian. [Digital patient communities as a social resource and satisfied patients as a sociological problem]
• [34]Johnsen E, Fernandeze-Luque L, Hagen R: Det sosiale nettet og helse. In Digitale pasienter [Digital Patients]. Edited by Tjora A, Sandaunet AG. Gyldendal Akademisk, Oslo; 2010:26-65. Norwegian. [Social media and health]
• [35]Timmers L, Thong M, Dekker FW, Boeschoten EW, Heijman M, Rijken M, Weinman J: Illness perceptions in dialysis patients and their association with quality of life. Psychol Health 2008, 23(6):679-690.
• [36]IBM Researchs. On Demand Innovation Services/FOCUS on...Telemedicine [http://domino.research.ibm.com/odis/odis.nsf/pages/focus.08.html] webcite 2010.