(5) Chronic Illness & Health-Related Quality of Life Flashcards
What are the characteristics of the onset and diagnosis of chronic illness?
- Onset: slow, striking
- Diagnosis: prolonged, ambiguous, may be a relief/shock
What are the 5 components of disruptions for a patient with chronic illness have to manage to ‘pretend’ to be normal? Briefly describe how/when each is needed.
- Illness work e.g. physical manifestation/limitation
- Daily work e.g. normal routine with minimal involvements of others’ help
- Emotions e.g. self’s & others’
- Identity e.g. when self’s position moved in a family/social
- Biographical e.g. re-invent self as who you WERE, with ACCEPTANCE of the limitations
Define stigma.
Negatively defined identity associated with “abnormal” status
Describe the FOUR types of stigma.
- Discreditable: unseen, others’ don’t know enough to judge
- Discredited: seen, others change their behaviours (could be positive, to distinguish between Enacted stigma e.g. disable lift)
- Enacted: discrimination actually occurs
- Felt: fear of being prejudiced/discriminated
What is the International Classification of Impairment, Disability and Handicap?
Disease -> Impairment (physical body change) -> Disability (limited performance) -> Handicap (social & psychological consequences)
What are the ways to measure healthcare performance (3)?
- Morbidity = diseased
- Mortality = death
- Patient-based outcomes
What are the advantage (1) and disadvantages (2) of using Morbidity to measure health?
- Easily defined
- Not always recorded
- Tells nothing about patient’s quality of life
What are the advantage (1) and disadvantages (2) of using Mortality to measure health?
- Routinely recorded and easily access
- Collection not always available/accurate
- Tells nothing about patient’s experiences
Suggest some possible uses of patient-based outcomes (4).
- Access cost-effectiveness for clinical audit
- Indication of the need from healthcare
- Measure population’s health status
- Compare interventions in a clinical trial
Define Health-related quality of life.
The functional effect of an illness and its subsequent therapy, experiences perceived by the patient
Suggest things that are included in the idea of the patient’s perspective on their health-related quality of life (8).
- Physical function
- Symptoms
- Global judgement
- Psychological wellbeing
- Social relationships
- Cognitive functioning (memory/alertness)
- Personal body image
- Satisfaction with healthcare
How is HRQoL related to PROMs?
PROMs (Patient reported outcome measures) = a measurement of HRQoL.
Suggest 2 generic instruments for the measurement of HRQoL. Briefly describe how each is collected.
- EQ-5D: 5 dimensions each with 3 levels of scoring
- SF-36: 36 questions in 8 dimensions (4 physical + 4 mental). Each dimension scores total between 0-100
Suggest some benefits of the SF-36 and EQ-5D individually. Why might EQ-5D be a better tool than SF-36?
- SF-36: only takes 5-10 mins & acceptable to most people & used to retest & responsive to change
- EQ-5D: good population data available, well validated and tested for reliability
- EQ-5D groups all dimensions into a single answer as opposed to the many dimensional answers
Suggest some advantages (3) and disadvantages (3) of Specific instruments used to measure HRQoL.
- Advantages: relevant, sensitive to change, acceptable to patient
- Disadvantages: exclude healthy individuals, limited comparisons, may not detect unexpected effects
What are the 3 main types of specific instruments that can be used for the measurement of HRQoL?
- Disease specific
- Site specific
- Dimension specific (quality of pain etc)
Why might the uses of patient based outcomes in healthcare be on the rise (3)?
- Increase chronic illnesses (e.g. management rather than curing)
- Medical staff failing
- Iatrogenic effects of care
Compare and contrast the pros and cons of using Qualitative & Quantitative methods used to measure HRQoL.
- Qualitative: good for first look at HRQoL but resource hungry & hard to evaluate
- Quantitative: gives more specific answers
Suggest some of the advantages (3) and disadvantages (2) of using Generic instruments to measure HRQoL.
- Advantages: board range of health/non-disease problems, enable comparisons between treatment groups, can detect unexpected effects of an intervention
- Disadvantages: less detailed/relevant, less acceptable to patients
What are illness narratives
The stories told by a patient about their illness and interactions with the world.
Suggest when are SF-36 and EQ-5D each is used?
- SF-36: population surveys & general health measure & resource allocation & clinical use
- EQ-5D: economic evaluations
