Abstract
BackgroundInvestigating individual, as opposed to predetermined, quality of life domains may yield important information about quality of life. This study investigated the individual quality of life domains nominated by youth with type 1 diabetes.MethodsEighty young people attending a diabetes summer camp completed the Schedule for the Evaluation of Individual Quality of Life-Direct Weighting interview, which allows respondents to nominate and evaluate their own quality of life domains.ResultsThe most frequently nominated life domains were 'family', 'friends', 'diabetes', 'school', and 'health' respectively; ranked in terms of importance, domains were 'religion', 'family', 'diabetes', 'health', and 'the golden rule'; ranked in order of satisfaction, domains were 'camp', 'religion', 'pets', and 'family' and 'a special person' were tied for fifth. Respondent age was significantly positively associated with the importance of 'friends', and a significantly negatively associated with the importance of 'family'. Nearly all respondents nominated a quality of life domain relating to physical status, however, the specific physical status domain and the rationale for its nomination varied. Some respondents nominated 'diabetes' as a domain and emphasized diabetes 'self-care behaviors' in order to avoid negative health consequences such as hospitalization. Other respondents nominated 'health' and focused more generally on 'living well with diabetes'. In an ANOVA with physical status domain as the independent variable and age as the dependent variable, participants who nominated 'diabetes' were younger (M = 12.9 years) than those who nominated 'health' (M = 15.9 years). In a second ANOVA, with rationale for nomination the physical status domain as the independent variable, and age as the dependent variable, those who emphasized 'self care behaviors' were younger (M = 11.8 years) than those who emphasized 'living well with diabetes' (M = 14.6 years). These differences are discussed in terms of cognitive development and in relation to the decline in self-care and glycemic control often observed during adolescence.ConclusionsRespondents nominated many non-diabetes life domains, underscoring that QOL is multidimensional. Subtle changes in conceptualization of diabetes and health with increasing age may reflect cognitive development or disease adjustment, and speak to the need for special attention to adolescents. Understanding individual quality of life domains can help clinicians motivate their young patients with diabetes for self-care. Future research should employ a larger, more diverse sample, and use longitudinal designs.
Highlights
Investigating individual, as opposed to predetermined, quality of life domains may yield important information about quality of life
Most Quality of life (QOL) measures ask individuals to assess their QOL using predetermined items. This is true for both generic measures such as the Medical Outcome Study Short Form (SF-36) [4], and disease specific measures such as the Diabetes Quality of Life for Youth questionnaire (DQOLY) [5,6] and the Audit of Diabetes Dependent Quality of Life (ADDQoL) [7]
Results of an ANOVA show no significant differences in age, HbA1c, or duration of diabetes
Summary
Investigating individual, as opposed to predetermined, quality of life domains may yield important information about quality of life. Most QOL measures ask individuals to assess their QOL using predetermined items This is true for both generic measures such as the Medical Outcome Study Short Form (SF-36) [4], and disease specific measures such as the Diabetes Quality of Life for Youth questionnaire (DQOLY) [5,6] and the Audit of Diabetes Dependent Quality of Life (ADDQoL) [7]. A more recent approach to QOL assessment is the development of individualized, or patient generated, measures that use an open ended question format. These measures allow respondents, from their own perspective, to identify the life domains that contribute most to their overall quality of life. It does not allow respondents to generate their own domains
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