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ObjectivePeople with chronic liver disease, particularly those with decompensated cirrhosis, experience several potentially debilitating complications that can have a significant impact on activities of daily living and quality of life. These impairments combined with the associated complex treatment mean that they are faced with specific and high levels of supportive care needs. We aimed to review reported perspectives, experiences and concerns of people with chronic liver disease worldwide. This information is necessary to guide development of policies around supportive needs screening tools and to enable prioritisation of support services for these patients.DesignSystematic searches of PubMed, MEDLINE, CINAHL and PsycINFO from the earliest records until 19 September 2014. Data were extracted using standardised forms. A qualitative, descriptive approach was utilised to analyse and synthesise data.ResultsThe initial search yielded 2598 reports: 26 studies reporting supportive care needs among patients with chronic liver disease were included, but few of them were patient-reported needs, none used a validated liver disease-specific supportive care need assessment instrument, and only three included patients with cirrhosis. Five key domains of supportive care needs were identified: informational or educational (eg, educational material, educational sessions), practical (eg, daily living), physical (eg, controlling pruritus and fatigue), patient care and support (eg, support groups), and psychological (eg, anxiety, sadness).ConclusionsWhile several key domains of supportive care needs were identified, most studies included hepatitis patients. There is a paucity of literature describing the supportive care needs of the chronic liver disease population likely to have the most needs—namely those with cirrhosis. Assessing the supportive care needs of people with chronic liver disease have potential utility in clinical practice for facilitating timely referrals to support services.

The results of the study suggest an unacceptable persistence of care needs not being met. There is an ongoing need to identify mechanisms to enhance care delivery so that the care needs of people with SLE are more effectively addressed.

This study aims to develop a self-administered needs assessment questionnaire for people with systemic lupus erythematosus (SLE), assess its face, content and construct validity and test the reliability of the instrument. Eighty-four people with SLE, registered with a Lupus Resource Centre in New South Wales, Australia participated in a series of focus groups and pre and pilot testing phases in the development of a needs instrument and 594 people from a SLE support association were sent the SLE needs questionnaire (SLENQ) and the MOS-SF-36 and asked to complete both. Face and content validity were found to be high following pre and pilot testing. Principal components analysis identified seven factors with eigenvalues greater than 1, which together accounted for 53% of the total variance (psychological/spiritual/existential, health services, health information, physical, social, daily living and employment/financial needs). Internal reliability coefficients (Cronbach's alpha) of all seven factor-based scales were found to be substantial, ranging from 0.77 to 0.96. Moderately significant correlation between the domains of the SLENQ and the MOS SF-36 were supportive in ascertaining concurrent validity. These findings suggest that the SLENQ provides a reliable and valid index of the global needs of people with SLE.

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