Chronic Illness: Health-Related Quality of Life Flashcards
Define the term chronic illness
Encompasses a wide range of long-term conditions, that tend to have profound influence on the lives of sufferers
Manifestations vary greatly day-to-day
Medical intervention usually palliative
Chronic illness will increase with ageing population
Not only older people with chronic illness
Describe the onset of chronic illness
Symptoms can be striking
More often slow in onset
Other explanations for symptoms often available
How are chronic illnesses diagnosed?
May be prolonged period of uncertainty
Ambivalent status of some diagnoses e.g. chronic fatigue syndrome, IBS
Process of diagnosis can be quite unpleasant
Diagnosis can be shocking, threatening, a relief
What is biographical disruption?
Key sociological concept
Identifies chronic illness as a major disruptive experience
What are illness narratives?
Much sociological research on chronic illness is based on people’s narrative of their illness
Narrative offer a way of making sense of illness, & they perform certain functions
What is narrative reconstruction?
Process by which the shattered self is reconstructed in ways that explain the appearance of illness
Comes from a desire to create a sense of coherence, stability & order in the aftermath of biographical disruption
What ‘work’ has to be done to cope with chronic illness?
Illness work Everyday work Emotional work Biographical work Identity work
What is illness work?
Symptom management
Central to the coping task is dealing with the physical manifestations of illness e.g. eating, bathing, going to toilet
What is everyday life work?
Managing daily living
Strategy devised to manage the condition & its impact
- Mobilisation of resources, balancing the demand on others & remaining independent
Try to keep pre-illness lifestyle & identity intact
- Disguising or minimising symptoms
Re-designate new life as ‘normal life’
What is emotional work?
Managing one’s own emotions & those of others
Work that patient’s do to protect the emotional well-being of others - downplaying pain/symptoms
Impact on social relationships
Impact on role (breadwinner, mother) may be devastating, especially if it involves a switch to dependency
What is biographical work?
Loss & subsequent reconstruction of self
What is identity work?
Work to maintain an acceptable identity
Illness can affect how people see themselves, how others see them
Illness can become the defining aspect of identity
Define stigma
A negatively defined condition, attribute, trait or behaviour conferring “deviant” status; a “spoiled” identity
What is discreditable stigma?
Nothing seen, but if found out…
Stigma is yet to be revealed. It may be kept secret, revealed intentionally by patient or by some factor the patient cannot control
E.g. mental illness, HIV
What is discredited stigma?
Physically visible characteristic or well-know stigma that sets patient apart
Patient is discredited, thus affects not only patient’s behaviour but the behaviour of others
e.g. Physical disability, known suicide attempt
Name a condition that can be associated with both discreditable & discredited stigma
Epilepsy
What is enacted stigma?
The real experience of prejudice, discrimination & disadvantage
Discrimination has actually occured
What is felt stigma?
Fear of enacted stigma
Encompasses a feeling of shame
Discrimination has not actually occurred, felt stigma is the fear of it
What is the medical model of disability?
Disability = Change from medical norms
Disadvantages are a direct consequent of impairment & disabilities
Medical intervention needed to cure or help
Lacks recognition of psychological & social factors
Uses stereotyping & stigmatising language
What is the social model of disability?
Disability = A form of social oppression
Disadvantages are a product of environment & its failure to adjust
Political action & social change needed to help
Leaves out biological factors
Overly drawn view of society
Fails to recognise bodily realities & extent to which these are solvable socially
What is the International Classification of Impairments, Disabilities or Handicaps (ICIDH)?
ICIDH attempts to classify the consequences of disease
Impairment - concerned with abnormalities in the structure of the functioning body
Disability - Concerned with the performance of activities
Handicap - Concerned with broader social & psychological consequences of living with impairment & disability
Widely used but subject to criticism
‘Handicap’ been used -vely, now generally avoided
Model implies problems are intrinsic/inevitable
What is the International Classification of Functions, Disability and Health (ICF)?
The WHO’s framework for measuring health & disability at individual & population levels
Endorsed for use as the international standard to describe & measure health & disability & attempts to integrate medical & social models
- Body structures & functions (impairment)
- Activities undertaken by the individual (difficulties/limitations experienced in doing them)
- Participation or involvement in life situations (May become restricted)
Why do we measure health?
Indication of the need for healthcare
Target resources where they’re most needed
Assess the effectiveness of health interventions
Evaluate the quality of health services
To use evaluations of effectiveness to get better value for money
To monitor patients’ progress
Measure of health include mortality, morbidity & patient-based outcomes
What are the aims of patient-based outcomes?
Attempt to assess well-being from the patient’s perspective
Compare scores before & after treatment or over loner-periods
- Health-related quality of life (HRQoL)
- Patient-reported outcome measure (PROM)
When can patient-based outcomes be used? (HRQoL & PROMs)
Clinically To assess benefits in relation to cost In a clinical audit To measure health status of populations To compare interventions in a clinical trial As a measure of service quality
What does the NHS outcomes framework identify as a key source of info about the outcomes of planned procedures?
PROMs
Patient-reported outcome measures
What is Health-related quality of life (HRQoL)?
Quality of life in clinical medicine represents the functional effect of an illness & its consequent therapy upon a patient, as perceived by the patient
Emphasis on
- Patient’s own views, functional effects, therapy as well as illness
HRQoL measurements are multi-dimensional. Name some of these dimensions
Physical function Symptoms Global judgements of health Psychological well-being Social well-being Cognitive functioning Personal constructs Satisfaction with care
How can HRQoL be measured?
Qualitatively
or
Quantitatively
Describe the use of qualitative methods to measure HRQoL
Good for initial looks at HRQoL
- Informing the development of quantitative instruments
Very resource hungry (training, time)
Not easy to use in evaluation, especially RCTs
Describe the use of quantitative methods to measure HRQoL
Questionnaires known as ‘instruments’ or ‘scales’
Reliability - instrument should be accurate over time
If patient has no change in health, they should the same score each time measured
Validity - Does the instrument actually measure what it is intended to?
Might only be assessing pain & neglecting social aspects
What types of instruments are used for the measurement of HRQoLs?
Generic instruments e.g. SF-36
Specific instruments e.g. Site specific, Oxford Hip score
What are the benefits of using generic instruments to measure HRQoL?
Can be used with any population (incl. healthy people)
Generally cover perceptions of overall health
Also questions on social, emotional & physical functioning, pain & self-care
What is the Short-Form 36-item Questionnaire (SF-36)?
Generic questionnaire to measure HRQoL
36 items, 8 dimensions
Responses to Qs scored
Scores within each dimension added together to give a score (0-100)
Dimension scores not added together, could make interpretation difficult in some cases
SF-36 is acceptable to people, only takes 5-10 mins, has good reliability & is responsive to change
What is the EuroQol EQ-5D?
Generic questionnaire used to measure HRQoL
5 dimensions: mobility, self-care, usual activities, pain/discomfort, anxiety/depression
3 levels for each dimension: No problems, Some/moderate problems, Extreme problems
Originally designed to complement other measures, increasingly used stand-alone
What are the benefits of the EuroQol EQ-5D?
Widely used
Good population data available
Well validated & tested for reliability
Particularly useful for use in economic evaluations
What specific instruments are used to measure HRQoL?
Disease specific - Asthma Quality of Life Questionnaire - Arthritis Impact Measurement Scale (AIMS) Site specific - Oxford Hip Score - Shoulder Disability Questionnaire Dimension Specific - Beck Depression Inventory - McGill Pain Questionnaire
What are the advantages of specific instruments when measuring HRQoL?
Very relevant content
Sensitive to change
Acceptable to patients
What are the disadvantages of specific instruments when measuring HRQoL?
Cannot be used with people who don’t have the disease
Comparison is limited
May not detect unexpected events
What questions are used to assess the suitability and value of HRQoL instruments?
Is there published work showing established validity and reliability?
Is there other published work showing successful use of the instrument
Is it suitable for your area of interest
Does it adequately reflect patients’ concerns in this area?
Is the instrument acceptable to patients?
Is it sensitive to change?
Is it easy to administer and analyse?
