PMID- 29976101
OWN - NLM
STAT- MEDLINE
DCOM- 20181023
LR  - 20181023
IS  - 1747-4132 (Electronic)
IS  - 1747-4124 (Linking)
VI  - 12
IP  - 8
DP  - 2018 Aug
TI  - The role of the chronic care model in promoting the management of the patient 
      with rare liver disease.
PG  - 829-841
LID - 10.1080/17474124.2018.1497483 [doi]
AB  - INTRODUCTION: The chronic care model (CCM) provides a holistic approach for 
      managing chronic illnesses. Patients with rare liver diseases (RLD) have complex 
      needs, impaired quality of life and often life-threatening complications. Most 
      RLD meet the criteria for a long-term chronic condition and should be viewed 
      through the prism of CCM. We aimed to ascertain whether the CCM has been 
      considered for the frequently-encountered RLD. METHODS: 
      MEDLINE(R)/PubMed(R)/Cochrane/EMBASE were searched to identify publications relating 
      to the use of the CCM for the management of six RLD. We identified 33 articles 
      eligible for inclusion. RESULTS: Six, eleven, one, thirteen, two and zero 
      studies, discussed individual components of the CCM for autoimmune hepatitis 
      (AIH), primary biliary cholangitis (PBC), primary sclerosing cirrhosis (PSC), 
      Wilsons disease (WD), alpha-1 antitrypsin deficiency (A1AD) and lysosomal acid 
      lipase deficiency (LALd) respectively. We have not identified studies using the 
      full CCM for any of the aforementioned RLD. DISCUSSION: Unlike in common chronic 
      conditions e.g. diabetes, there has been limited consideration of the use of CCM 
      (or its components) for the management of RLD. This may reflect a reluctance of 
      the clinical community to view these diseases as chronic or lack of healthcare 
      policy investment in rare diseases in general.
FAU - Pericleous, Marinos
AU  - Pericleous M
AD  - a Department of Gastroenterology and Hepatology , Royal Surrey County Hospital 
      NHS Foundation Trust , Guildford , UK.
AD  - b Department of Clinical and experimental medicine , University of Surrey , 
      Guildford , UK.
FAU - Kelly, Claire
AU  - Kelly C
AD  - a Department of Gastroenterology and Hepatology , Royal Surrey County Hospital 
      NHS Foundation Trust , Guildford , UK.
AD  - b Department of Clinical and experimental medicine , University of Surrey , 
      Guildford , UK.
FAU - Ala, Aftab
AU  - Ala A
AD  - a Department of Gastroenterology and Hepatology , Royal Surrey County Hospital 
      NHS Foundation Trust , Guildford , UK.
AD  - b Department of Clinical and experimental medicine , University of Surrey , 
      Guildford , UK.
FAU - De Lusignan, Simon
AU  - De Lusignan S
AD  - b Department of Clinical and experimental medicine , University of Surrey , 
      Guildford , UK.
LA  - eng
PT  - Journal Article
PT  - Review
DEP - 20180713
PL  - England
TA  - Expert Rev Gastroenterol Hepatol
JT  - Expert review of gastroenterology & hepatology
JID - 101278199
SB  - IM
MH  - Chronic Disease/*therapy
MH  - Holistic Health
MH  - Humans
MH  - Liver Diseases/*therapy
MH  - Models, Theoretical
MH  - Patient Care/*methods
MH  - *Patient Care Management
MH  - Quality of Life
MH  - Rare Diseases/*therapy
OTO - NOTNLM
OT  - Liver disease
OT  - chronic care model
OT  - integrated care
OT  - orphan liver diseases
OT  - rare diseases
EDAT- 2018/07/07 06:00
MHDA- 2018/10/24 06:00
CRDT- 2018/07/07 06:00
PHST- 2018/07/07 06:00 [pubmed]
PHST- 2018/10/24 06:00 [medline]
PHST- 2018/07/07 06:00 [entrez]
AID - 10.1080/17474124.2018.1497483 [doi]
PST - ppublish
SO  - Expert Rev Gastroenterol Hepatol. 2018 Aug;12(8):829-841. doi: 
      10.1080/17474124.2018.1497483. Epub 2018 Jul 13.