The PBC-40 is a patient-derived, disease specific quality of life measure developed and validated for use in PBC (1). Validated originally in English it has now been validated in Italian and Japanese translations (2). Validation in German is ongoing at present.
The characteristics of the measure have been described in detail and it has been widely applied in practice (3-9). It is designed for self-completion and takes approximately 5 minutes to complete. Its psychometric properties have been described (1). Analysis is by domain, with the scoring explained in the coded-PBC-40. Data should be considered by domain rather than in terms of a cumulative PBC-40 score. If data are missing from a domain (typically missed or duplicated answers) the whole domain should be discarded if <50% of items are completed. If >50% of responses are present then the median value for the completed items in the domain should be ascribed to the missing item.
The measure is available on an open-source basis with no licence fee needed. We would be happy to share data from our large pool (>5000) with investigators interested in putting their experience of the measure into context.
Blank PBC-40 PDF 67Kb
Coded PBC-40 PDF 74Kb
1. Jacoby A, Rannard A, Buck D, Bhala N, Newton JL, James OFW, Jones DEJ. Development, validation and evaluation of the PBC-40, a disease specific health related quality of life measure for primary biliary cirrhosis. Gut 2005;54:1622-1629.
2. Montali L, Tanaka A, Riva P, Takahashi H, Cocchi C, Ueno Y, Migloretti M, Takikawa H, Vecchio L, Frigerio A, Bianchi I, Jorgenson R, LindorK.D., Podda M, Invernizzi P. A short version of a HRQoL questionnaire for italian and Japanese patients with primary Biliary Cirrhosis. Dig Liver Dis 2010;42:718-723.
3. Newton JL, Bhala N, Burt J, Jones DEJ. Characterisation of the associations and impact of symptoms in primary biliary cirrhosis using a disease specific quality of life measure. J Hepatol 2006;44:776-782.
4. Newton JL, Gibson JG, Tomlinson M, Wilton K, Jones DEJ. Fatigue in primary biliary cirrhosis is associated with excessive daytime somnolence. Hepatology 2006;44:91-98.
5. Newton JL, Davidson A, Kerr S, Bhala N, Pairman J, Burt J, Jones DEJ. Autonomic dysfunction in primary biliary cirrhosis correlates with fatigue severity. Eur J Gastroenterol Hepatol 2007;19:125-132.
6. Newton JL, Hudson M, Tachtatzis P, Sutcliffe K, Pairman J, Burt JA, Jones DEJ. The population prevalence and symptom associations of autonomic dysfunction in primary biliary cirrhosis. Hepatology 2007;45:1496-1505.
7. Newton JL, Hollingsworth KG, Taylor R, El-Sharkawy AM, Khan ZU, Pearce R, Sutcliffe K, Okonkwo O, Davidson A, Burt J, Blamire A, Jones DEJ. Cognitive impairment in primary biliary cirrhosis: symtpom impact and potential aetiology. Hepatology 2008;48:541-549.
8. Newton JL, Pairman J, Sutcliffe K, Wilton K, Jones DEJ. A predictive model for fatigue and its aetiological associations in primary biliary cirrhosis. Clin Gastroenterol Hepatol 2008;6:228-233.
9. Jones DEJ, Sutcliffe K, Pairman J, Wilton K, Newton JL. An integrated care pathway improves quality of life in primary biliary cirrhosis. QJM 2008;101:535-543.