Wagner Julie A, Abbott Gina, Lett Syretta
Department of Behavioral Sciences and Community Health, University of Connecticut Health Center, 263 Farmington Avenue, Farmington, CT 06030, USA.
Health Qual Life Outcomes. 2004 Sep 22;2:54. doi: 10.1186/1477-7525-2-54.
Investigating 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.
Eighty 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.
The 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.
Respondents 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.
与预先确定的生活质量领域相比,研究个体生活质量领域可能会产生有关生活质量的重要信息。本研究调查了1型糖尿病青少年所提名的个体生活质量领域。
80名参加糖尿病夏令营的年轻人完成了个体生活质量评估直接加权访谈问卷,该问卷允许受访者提名并评估自己的生活质量领域。
最常被提名的生活领域分别是“家庭”“朋友”“糖尿病”“学校”和“健康”;按重要性排序,领域依次为“宗教”“家庭”“糖尿病”“健康”和“黄金法则”;按满意度排序,领域依次为“营地”“宗教”“宠物”,“家庭”和“一个特别的人”并列第五。受访者年龄与“朋友”的重要性显著正相关,与“家庭”的重要性显著负相关。几乎所有受访者都提名了一个与身体状况相关的生活质量领域,然而,具体的身体状况领域及其提名理由各不相同。一些受访者将“糖尿病”作为一个领域,并强调糖尿病的“自我护理行为”,以避免诸如住院等负面健康后果。其他受访者提名“健康”,并更普遍地关注“与糖尿病和谐共处”。在以身体状况领域为自变量、年龄为因变量的方差分析中,提名“糖尿病”的参与者(平均年龄12.9岁)比提名“健康”的参与者(平均年龄15.9岁)更年轻。在第二项方差分析中,以提名身体状况领域的理由为自变量、年龄为因变量,强调“自我护理行为”的参与者(平均年龄11.8岁)比强调“与糖尿病和谐共处”的参与者(平均年龄14.6岁)更年轻。将根据认知发展以及青春期经常观察到的自我护理和血糖控制下降情况来讨论这些差异。
受访者提名了许多非糖尿病生活领域,强调生活质量是多维度的。随着年龄增长,糖尿病和健康概念的细微变化可能反映了认知发展或疾病适应情况,并表明需要特别关注青少年。了解个体生活质量领域有助于临床医生激励他们患有糖尿病的年轻患者进行自我护理。未来的研究应采用更大、更多样化的样本,并使用纵向设计。