Comprehensive measures tap broad areas of functioning

Info iconThis preview shows page 1. Sign up to view the full content.

View Full Document Right Arrow Icon
This is the end of the preview. Sign up to access the rest of the document.

Unformatted text preview: e and its burden Identify patients whose disease is poorly managed Modify treatment consistent with disease severity Expanded “outcomes” Can also be used to demonstrate drug efficacy or verify claims made by companies who market drugs and other therapies. Copyright 2011 - P.C. Doyle Copyright 2013 - P.C. Doyle - there is a lot of suffering for the children, but also for the parents - the only time we truely have our wishes granted is when we die (our will) Structure of Measures ! Comprehensive measures “tap” broad areas of functioning ! However, refined measures may explore specific entities or domains (or subdomains) Emerging issues: What you always need to consider! ! Influence of disease ! Its treatment ! Physical changes ! Disfigurement ! Loss of communication ! Gender-based concerns Copyright 2010 - P.C. Doyle - one of the primary entities we need to look at is the burden on families and the suffering of others - think of these relative to the chart of affective states 5 Why Measure Childhood QOL? Copyright 2011 - P.C. Doyle - i nformations patients provide allows health care professionals to ask mor important questions Emergence of Childhood QOL Research Conceptual Considerations: Definitions of HRQOL Applied to Children " Developments in medical science and technology " Improved life expectancy in chronic diseases such as cancer, diabetes and cystic fibrosis " Concern about burden of disease and effect of therapeutic intervention " Involvement of patients directly in clinical decision making process “State of complete physical, mental and social well-being and not merely the absence of disease” (WHO) Conceptual Considerations: Basic QOL Domains Family Function and Social Relations " Core domains: physical, social, and emotional/psychological addressed in most instruments " Social context, e.g. friends, school surroundings and community play central role in HRQOL assessments " Importance placed on each basic domain may change throughout various age groups " Children are not independent beings and family comprises support system " Quality of child’s family and social environment important " Burden of disease extends to siblings, parents, etc. 6 Additional QOL Domains " Can parents perceive their child’s HRQOL accurately? " QOL scores should ideally be obtained from child " Situations in which use of proxy is unavoidable: symptoms social inter actions sleep self-estee m school physic al he alth/functioning me dical/trea tm ent leisure independenc e/a utonomy future family environment em otions coping cognition car egiver concerns bullying body image behavior activities 0 25 50 75 percentage of tools Parent-Child Agreement Reasons for Variability " High agreement for objective behaviours (e.g. walking hyperactivity) " Low agreement for internalizing problems: subjective feelings, emotional states, pain, family functioning; " Parents perceive illness and treatment to be more bothersome " Children report more bodily symptoms " Parents report poorer overall QOL than children " Use of different reference points " Differences in response pattern: position bias, acquiescence response bias, limited understanding of negatively worded ite...
View Full Document

Ask a homework question - tutors are online