Understanding the concept of health related quality of life in adult, general critical care survivors

Background. Health related quality of life (HRQoL) is an important outcome to assess in adult, general critical care survivors'. There are two expert consensus generic HRQoL measures-the SF-36 and EQ-5D-for this population, but there is still no agreed specific measure, despite the move towards using a combination of generic and specific measures in many other areas of health care. To address this gap, the research aims, first, to understand and define the concept of HRQoL from the perspective of survivors and second, to determine the extent to which the current expert consensus generic measures capture survivors' HRQoL, so that recommendations concerning a critical care-specific measure can be made. Methods. Semi-structured interviews were conducted using two strategies of data collection; an in-depth semi-structured interview based on a topic guide and a 'questerview2' (1), a form of cognitive debriefing that used either the SF-36 or the EQ- 5D to trigger narratives. Results. Based on study findings, it is recommended that the critical care-specific measure contain general questions that assess: 0 Survivors' emotional/psychological and cognitive statuses. 0 The following effects of survivors' personal status: - Certain restrictive effects of physical status and emotional/psychological status on activities and behaviours. - Increases in activities and behaviours caused by physical status and emotional/psychological status. - Impact of cognitive status on activities and behaviours (both restrictions and increases). - Impact of personal status on: perception of, interpretation of, and responses to life; personality; external appearance; physical zone of comfort and/or activity; suitability and availability of clothes; interactions and relationships with others; place of residence; and finances. To further refine the measurement of survivors' HRQoL, this measure should also: (i) specifically capture survivors' perceptions of the pertinent changes after critical illness; (ii) accurately reflect fluctuating changes; and (iii) encourage survivors to provide relevant information.