Session 4 - Chronic Illness; Health-Related Quality of Life Flashcards
What is chronic illness?
is a term that encompasses a wide range of conditions, which are long term and tend to have profound influence on the lives of sufferers
Why is a detailed understanding of the impact of chronic illness and disability necessary for providers and social?
In order to offer appropriate care and support
Describe the onset of a chronic conditoon
o Symptoms can be striking
o More often they are slow in their onset
o Other explanations for the symptoms are often available
Give three issues which may face a patient recieving a diagnosis of chronic illness
Shocking
Threatening
A relief
What is biographical disruption?
Biographical disruption is a key sociological concept, identifying chronic illness as a major disruptive experience.
What is an illness narrative?
a way of making sense of the illness, and they perform certain functions.
What is narrative reconstruction?
Narrative reconstruction is a process by which the shattered self is reconstructed in ways that explain the appearance of illness.
Why do people reconstruct a narrative?
Narrative reconstruction comes from a desire to create a sense of coherence, stability and order in the aftermath of biographical disruption
Give five types of work in chronic illness
Illness work Everyday life work Emotional work Biographical work Identity work
What is illness work?
o Symptom management
o Central to the coping task is dealing with the physical manifestations of illness. E.g. eating, bathing, going to the toilet
What is eveyday life work?
o Managing daily living
o Try to keep pre-illness lifestyle and identity intact
o Re-designate new life as ‘normal life’
What is emotional work?
o Managing one’s own emotions and those of otherso
- Work that patients do to protect the emotional well-being of others
What are the two biggest impacts of emotional work?
o Impact on social relationships
o Impact on role
What is biographical work?
Loss and subsequent reconstruction of self
What is identity work?
Work to maintain an acceptable identitiy
o Illness can affect how people see themselves, and how others see them
Illness can become the defining aspect of identity
What is stigma?
A negatively defined condition, attribute, trait or behaviour conferring “deviant” status; a “spoiled” identity
Give four types of stigma
Discreditable stigma
Discredited stigma
Enacted stigma
Felt stigma
What is discreditable stigma?
o Nothing seen, but if found out…
o The stigma is yet to be revealed. It may be kept secret, revealed intentionally by the patient or by some factor the patient cannot control.
E.g. Mental illness, HIV
What is discredited stigma?
o Physically visible characteristic or well-known stigma that sets patient apart
o The patient is discredited, thus affects not only the patient’s behaviour but the behaviour of others
E.g. Physical disability, known suicide attempt
Give a condition that can be associated with both discreditable and discredited stigma
Epilepsy
What is enacted stigma?
o The real experience of prejudice, discrimination and disadvantage
o Discrimination has actually occurred
What is felt stigma?
o Fear of enacted stigma
o Encompasses a feeling of shame
o Discrimination has not actually occurred, felt stigma is the fear of it
What are the two models of disability?
Medical model of disability
Social model of disability
What is the medical model of disability?
o Disability = Change from medical norms
o Disadvantages are a direct consequent of impairment and disabilities
o Medical intervention needed to cure or help
What are the drawbacks of the medical model of disability?
The medical model lacks recognition of psychological and social factors, focussing purely on the biological. It also uses stereotyping and stigmatising language.
What is the social model of disability?
o Disability = A form of social oppression
o Disadvantages are a product of environment and its failure to adjust
o Political action and social change needed to help
What are the drawbacks of the social model of disability?
The social model leaves out biological factors, with an overly drawn view of society. It also fails to recognise bodily realities and the extent to which these are solvable socially.
Give two different classifications of disability?
International classification of impairments, disability or handicaps
International Classification of Functions, Disability and Health
How does the International classification of impairments, disability or handicaps classify disease? x3
o Impairment
Concerned with abnormalities in the structure of the functioning body
o Disability
Concerned with the performance of activities
o Handicap
Concerned with broader social and psychological consequences of living with impairment and disability
What are the drawbacks of the International classification of impairments, disability or handicap?
The term ‘handicap’ has been used negatively and is now generally avoided. The model also implies problems are intrinsic or inevitable.
Draw out the international classification of functions disability and health
Health condition Body function and structure Activities Participation Environmental factors Personal factors
What three ways does international classification of functions disability and health define disability
international classification of functions disability and health
Give six reasons we measure health
o Indication of the need for healthcare
o Target resources where they are most needed
o Assess the effectiveness of health interventions
o Evaluate the quality of health services
o To use evaluations of effectiveness to get better value for money
o To monitor patients’ progress
Give two ways of assessing patient based outcomes
Health-Related Quality of Life (HRQoL)
Patient-Reported Outcome Measures (PROM)
Give six ways patient based outcomes can be used
o Be used clinically
o Be used to assess benefits in relation to cost
o Be used in a clinical audit
o Be used to measure health status of populations
o Be used to compare interventions in a clinical trial
o Be used as a measure of service quality
How does the NHS outcomes framework source information about outcomes?
Using PROMS (patient reported outcome measures)
What is health related quality of life?
Quality of life in clinical medicine represents the functional effect of an illness and its consequent therapy upon a patient, as perceived by the patient.
What are the three key points of HRQoL
o Emphasis on patient’s own views
o Emphasis on functional effects
o Emphasis on therapy as well as illness
Give 8 categories assesed in HRQoL
Bio (function) Psycho Social (wellbeing)
Symptoms, cognitive functioning
Personal constructs, global judgements of health, satisfaction with care
Give two ways in which HRWoL can be measured
via Qualitative or Quantitative methods.
Give positive and negatives (2) of using qualitative methods to measure HRQoL
o Good for initial looks at HRQoL
Informing the development of quantitative instruments
o Very resource hungry (Training, time)
o Not easy to use in evaluation, especially RCTs
Quantitative methods to measure HRQoL, what does it rely on?
Relies on the use of questionnaires known as ‘instruments’ or ‘scales’
Give two necessary facets of quantiative methods to measure HRQoL
Reliability of Instruments
Validity of Instruments
What is reliability of instruments?
o Instrument should be accurate over time
If the patient has no change in health, they should get the same score each time on the measure
What is validity of instruments?
o Does the instrument actually measure what it is intended to measure?
Might only be assessing pain and neglecting social aspects
Give two types of instruments for measure HRQoL
Generic
Specific
Give three positives of generic instruments to measure HRQoL
o Can be used with any population (including healthy people)
o Generally cover perceptions of overall health
o Also questions on social, emotional and physical functioning, pain and self-care
What are two types of generic instruments to measure HRQoL
Short-form 36-item questionnaire
EuroQoL EQ-5D
Outline an SF-36
o Contains 36 items that assess HRQoL
Grouped into 8 dimensions
o Responses to questions are scored
o Scores within each dimension are added together to give a score (0-100)
o Dimension scores are not added together to give an overall score, could make interpretation difficult in some cares
Give three positives of SF-36
, only takes 5-10 minutes to complete, has good reliability and is responsive to change
Outline EQ-5D
o Five dimensions Mobility, self-care, usual activities, pain/discomfort, anxiety/depression o Three levels for each dimension No problems Some/moderate problems Extreme problems
Give four positives of EQ-5D
It is widely used, good population data is available, and it has been well validated and tested for reliability. It is particularly suitable for use in economic evaluations.
Give three types of specific survey
Disease specific
Site specific
Dimension specific
Give two types of disease specific
Asthma Quality of Life Questionnaire
Arthritis Impact Measurement Scale (AIMS)
Give two types of site specific
Oxford Hip Score
Shoulder Disability Questionnaire
Give two types of dimension specific
Beck Depression Inventory
McGill Pain Questionnaire
Givehree advantages of specific instruments t
they have very relevant content, are sensitive to change and are acceptable to patients.
Give three disadvantages o specific instruments
they cannot be used with people who don’t have the disease, comparison is limited and they may not detect unexpected effects
Assess the suitability and value of HRQoL instruments in a range of areas
o Is there published work showing established validity and reliability?
o Is there other published work showing successful use of the instrument
o Is it suitable for your area of interest
o Does it adequately reflect patients’ concerns in this area?
o Is the instrument acceptable to patients?
o Is it sensitive to change?
o Is it easy to administer and analyse?
