Systematic review: unmet supportive care needs in people diagnosed with chronic liver disease.

Objective: People 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.

Persistence of unmet need for care among people with systemic lupus erythematosus: a longitudinal study.

Purpose: The extent and variability of unmet care needs over time of people with systemic lupus erythematosus (SLE) has not been previously reported. A prospective study was undertaken to determine the variability over time of such needs.

Method: A 97-item SLE needs questionnaire (SLENQ) was completed on two occasions 6 months apart by 233 members of a lupus support association.

Development and psychometric analysis of the systemic lupus erythematosus needs questionnaire (SLENQ).

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.

Prevalence and correlates of perceived unmet needs of people with systemic lupus erythematosus.

To assess the prevalence and correlates of perceived unmet need among people with systemic lupus erythematosus (SLE) 386 people with SLE, recruited from a support association in NSW, Australia, completed a mail-back survey that included 97 items measuring perceived unmet needs across seven domains: physical, daily living, psychological/spiritual/existential, health services, health information, social support and employment/financial. Ninety-four percent of participants had at least one unmet need. The highest levels of unmet need were tiredness (81%); pain (73%); not being able to do things one used to (72%); fear of exacerbation (72%); sleeping problems (70%); anxiety and stress (69%); and feeling down (68%).