What things are important in people's lives? A survey of the public's judgements to inform scales of health related quality of life.

The research presented here aimed to obtain population norms on pertinent domains of quality of life and health related quality of life, and the relative importance of these domains to people. The OPCS Omnibus Survey was used as the vehicle for the study. This is a monthly survey of a random sample of 2000 adult members of the population in Great Britain, based on a random sample of households. The data was collected for a one month period. The response rate to the survey was 77%. In response to a generic question about the five (priority ordered) most important things in their lives (good or bad), respondents were most likely to freely mention as the first most important thing in their lives relationships with family or relatives, followed by their own health, the health of another (close) person and finances/standard of living/housing. When responses relating to respondents' priority ranked areas 1-5 were combined, the most frequently mentioned area of life was finances/standard of living/housing, followed by relationships with family and friends, own health, the health of close others and social life/leisure activities. Thus, different distributions were obtained depending on whether priority ordering or frequency with which item was mentioned was analysed. Of those who reported a longstanding illness, the conditions which were most likely to be reported as affecting their lives were respiratory conditions, joint disorders and heart and circulatory diseases. The most commonly freely mentioned first most important effects of the longstanding illness on their lives were (in order of frequency) ability to get out and about/stand/walk/go out shopping, being able to work/find a job and effects on social life/leisure activities (based on office coding from verbatim responses recorded on the questionnaire). When the responses relating to respondents' priority ranks 1-5 were combined, the most frequently mentioned area of life affected was ability to get out and about/stand/walk/go out shopping, followed by social life/leisure activities, and availability of work/ability to work. Again, differences in distributions were obtained depending on the method of analysis. Further investigations also revealed differences according to the method of questioning and coding (respondent vs office). When respondents selected their own codes from a showcard in relation to health effects, there were some discrepancies with their (office coded) verbatim replies (which were recorded by the interviewer before they saw the showcard, for later office coding). The showcard had the effect of prompting them, and the then most commonly mentioned first most important effects of the longstanding illness on their lives were (in order of frequency) pain, tiredness/lack of energy/lethargy, social life/leisure activities, and availability of work/ability to work. This discrepancy illustrates the biasing influence of using showcards, in comparison with the open coding of actual verbatim responses back in the office (on the assumption that the latter are more valid-unprompted-responses). Analysis of the domains included in the most popularly used health status scales, which are used to measure health related quality of life, revealed that several items ranked as important by the public were missing.