PMID- 20647981
OWN - NLM
STAT- MEDLINE
DCOM- 20100903
LR  - 20151119
IS  - 0966-0461 (Print)
IS  - 0966-0461 (Linking)
VI  - 19
IP  - 14
DP  - 2010 Jul 22-Aug 11
TI  - Intravenous enzyme replacement therapy: hospital vs home.
PG  - 892-4, 896-8
AB  - Two surveys were carried out to establish the status of enzyme replacement 
      therapy (ERT) for lysosomal storage diseases in Italy. The first was a national 
      survey covering the regional reference centres (RRCs) for these diseases; replies 
      disclosed that 57.7% of patients are on ERT, administered almost exclusively in 
      hospital settings (local hospital 60.7%, RRC 34.8%, home 2.6%); Italian health 
      service procedures do not support ERT at home. The second survey was a regional 
      survey in Lombardy, involving 48 patients (six of whom were on ERT at home). 
      According to 40% of the patients, hospital-based ERT is disruptive, causing loss 
      of days at school/work, stress and family issues. The patients on home therapy 
      did not have these problems. However, 93% of patients receiving ERT in hospital 
      perceived the advantages of greater safety, closer monitoring and more support 
      from health professionals and experts. A total of 55% were willing to receive ERT 
      at home, but 33% were against it. This may be the result of a lack of experience 
      with ERT at home in Italy, or because of different opinions between family 
      members and physicians. As international experience shows that ERT at home saves 
      healthcare resources and improves quality of life, the issue should be raised 
      with Italian healthcare policy makers, who should ensure nursing support for 
      home-based ERT.
FAU - Parini, Rossella
AU  - Parini R
AD  - Rare Metabolic Diseases Unit, Department of Paediatrics, San Gerardo Hospital, 
      Monza, Italy.
FAU - Pozzi, Katia
AU  - Pozzi K
FAU - Di Mauro, Stefania
AU  - Di Mauro S
FAU - Furlan, Francesca
AU  - Furlan F
FAU - Rigoldi, Miriam
AU  - Rigoldi M
LA  - eng
PT  - Journal Article
PT  - Research Support, Non-U.S. Gov't
PL  - England
TA  - Br J Nurs
JT  - British journal of nursing (Mark Allen Publishing)
JID - 9212059
MH  - Absenteeism
MH  - Adult
MH  - Attitude to Health
MH  - Child
MH  - Enzyme Replacement Therapy/adverse effects/nursing/*statistics & numerical data
MH  - Health Care Surveys
MH  - Home Infusion Therapy/adverse effects/nursing/*statistics & numerical data
MH  - Hospitalization/statistics & numerical data
MH  - Humans
MH  - Italy/epidemiology
MH  - Lysosomal Storage Diseases/*drug therapy/epidemiology/genetics
MH  - National Health Programs/organization & administration
MH  - Needs Assessment
MH  - Practice Patterns, Physicians'/organization & administration
MH  - Safety Management
EDAT- 2010/07/22 06:00
MHDA- 2010/09/04 06:00
CRDT- 2010/07/22 06:00
PHST- 2010/07/22 06:00 [entrez]
PHST- 2010/07/22 06:00 [pubmed]
PHST- 2010/09/04 06:00 [medline]
AID - 10.12968/bjon.2010.19.14.49047 [doi]
PST - ppublish
SO  - Br J Nurs. 2010 Jul 22-Aug 11;19(14):892-4, 896-8. doi: 
      10.12968/bjon.2010.19.14.49047.