Long term conditions and wellbeing Flashcards
1
Q
what is a long term condition
A
- “LONG TERM CONDITIONS are characterised by their on-going duration and the fact that they are often managed throughout the life span…changes the life of the individual affected and generates a need to adapt and develop an understanding of the relationship between the demands of life and those of the condition” (Lambert & Keogh, 2015)
○ Key aspects of this definition: ongoing, managed throughout the life span, changes in life needing to adapt
Health conditions for which there is currently no cure, but which can be managed with drugs and other treatments. A long-term condition is one that lasts a year or longer and impacts on a person’s life (Guy’s & St Thomas’ Charity, 2018)
2
Q
PRISMS project
A
- Asthma, type 1 and type 2 diabetes, depression, chronic obstructive pulmonary disease, chronic kidney disease, dementia, epilepsy, hypertension, inflammatory arthropathies, irritable bowel syndrome, low back pain, progressive neurological disorders (Taylor et al, 2014)
- Attempted to break down 14 diverse conditions
Rather than different groups they drilled into different diagnoses
- Attempted to break down 14 diverse conditions
3
Q
types of LTCs
A
- Commonalities:
- Related to other LCTs
- Linked to behavioural factors
○ Protective behavioural factors e.g. eating properly, physical exercise - Linked to inequalities
○ Unequal access to healthcare, differential access to treatment options e.g. in social care, racial disparities, low socioeconomic status - Live much of life with the condition
- Constant management
- Complex
- Often related to other conditions- multicomorbidity
One might make the other one worse (bidirectionally linked)
4
Q
different elements of care in LTCs- example of diabetes
A
- All the elements involved in the care of someone e.g. diabetes
- Medical appointments, injection of insulin, understanding symptoms, role of sugar, controlling what we eat and drink, how to maintain quality of life whilst staying fit and well
Highlights the complexity of the nature of LTC
- Medical appointments, injection of insulin, understanding symptoms, role of sugar, controlling what we eat and drink, how to maintain quality of life whilst staying fit and well
5
Q
stages of living with LTCs
A
- Before there is diagnosis there is a period of opportunity for prevention- gold standard health care is going here (prevention before it starts)
- Around education and how we create an environment conducive to staying well
- Not a linear process- may see regression but generally speaking there is a period where we can intervene
- Initial detection- symptoms we experience that are abnormal, speak to family and friends
- At some point many will receive a diagnosis from a health profession
- Adjustment- period were we receive a diagnosis and adjust to our new identity- e.g. a diagnosis with dementia (who am I)
- Some may reject this- it is a personal choice
- Learning to live with and self manage
- Reducing additional risk- preventing deterioration e.g. medication delaying cognitive declines for dementia
- Self management- empowering the individual so they manage the condition on their own
- Adapting and thriving- adapt to the condition, becoming resilient, maintaining a life of satisfaction and growing from it
Not a linear process- not everyone goes through the same stages in the same order, and there can be regression
6
Q
core aims of LTCs care
A
- Optimise quality of life
- Important to get the symptoms under control but it is more important that the impact on their life is not as debilitating
- Reduce impact on physical, social, emotional functioning
- Acknowledgment of the psychological impact this is happening
- Prevent multi-morbidity (i.e. other LTCs developing)
- Spreading of one condition into another
- Longitudinally associated with serious negative outcomes including mortality rates
- Protect psychological wellbeing
- Relates to quality of life
- Diagnose early, help with adjusting to living with a LTC, support self-management
- What can we do to improve the rate of diagnosis and early diagnosis e.g. psychosis and bipolar
- Involves complex processes where we constantly communicate with different community stakeholders to prevent relapse
- About a collaborative process
7
Q
LTC prevalence
A
- 15 million people in England with LTCs
- Numbers of people living with LTCs is growing – especially those with multiple LTCs
- 14% of people <40 years old
- 58% of people >60 years old
- Those in the poorest social class have a 60% higher chance of having a LTC, 30% more severe, than those in the richest social class
- “Some people living in a deprived area will have multiple health problems 10–15 years earlier than people in affluent areas” (Barnett et al., 2012)
- Higher social class have access to private healthcare- quicker diagnoses
- Lower social class- increased exposure to stress
- Lower social class- less access to healthy foods (expensive)
Access to green spaces- city life etc
8
Q
NHS house of care- framework for LTC care
A
- 50% of all GP appointments, 64% of all outpatient appointments, 70% of all bed days
- Absorbs 70% of acute and primary care costs in the NHS
- ‘Multi-morbidity is now the norm’- current NHS care not set up to manage this
- Single-condition services
- Lack of care coordination
- Lack of attention to wellbeing and mental health
- Fragmented care (more than medicine provided elsewhere)
- Informational continuity– patient records, consistent care
- Reactive not predictive services
- Lack of emphasis on self-care
- Care should therefore be…
- Person-centred
- Holistic
- Coordinated
- In partnership with professionals
- Draws on persons’ expertise
Draws on resources in people’s communities
9
Q
from the biomedical to the biopsychosocial model
A
- Need to understand and control symptoms and use physiology and anatomy knowledge
Once the LTC has been controlled we need to adopt the biopsychosocial model into play to help the patients wellbeing (sits at the intersection of all the three aspects)
10
Q
health related behaviours
A
- King’s Fund (2018) identify top 4 risk factors had the most significant impact on people’s health:
- drinking, smoking, healthy eating, exercise
Modifiable risk factors- can do things about this
11
Q
NHS long term plan- ‘multi-risk should be taken as seriously as multi-morbidity’
A
- 7 in 10 people exhibit 2 or more of these ‘big 4’ risk factors
- More risk factors = higher mortality risk
Risk linked to the 3 Ps… - prevention, personal responsibility and health inequalities
12
Q
wide risk factors for LTCs
A
Snowball effects with different things; lots of factors interplay particularly when looking at managing stress e.g. smoking, drinking, comfort eating due to stress in the workplace which can cause LTCs
13
Q
the role of mental health in LTCs
A
- Having a LTC may increase the risk of developing a mental health problem (e.g. becoming depressed or anxious)
- Psychological impact of living with a LTC
- Reductions in quality of life
- Side effects of medications (e.g. sedation)
- Physiological changes due to illness (e.g. hormone imbalances)
- Having a mental health problem may increase risk of poorer physical health – e.g. hypertension is more likely in those with depression
- Side effects of psychotropic medications (e.g. obesity)
- Chronic stress leading to damage to cardiovascular / immune system
- Unhealthy coping strategies (e.g. alcohol / poor diet)
Poor self-care / management of health condition
14
Q
a call for integrating physical and mental health care
A
- High rates of mental health conditions among those with LTCs
- Reduced life-expectancy for people diagnosed with severe mental illness, largely due to poor physical health
Little psychological support currently available for people adjusting to and living with LTCs
15
Q
elements of self management
A
- Medical settings
- Attending / organising health care appointments
- Information processing
- Health literacy
- Coordination of care
- Home environment
- Attending / organising health care appointments
- Information processing
- Health literacy
Coordination of care
16
Q
what does effective self management look like
A
- Key characteristics:
- Multi-faceted
- Tailored not generic
- Culture/beliefs-specific
- Specific to disease trajectory
- Collaborative Dr-patient relationship
- Health care organisation that promotes self-care
- *Evidence from RCTs shows that no single component here is any more important that another
- “Supporting self-management is inseparable from the high-quality care for long-term conditions…health-care providers should promote a culture of actively supporting self-management as a normal, expected, monitored and rewarded aspect of care. (Taylor et al, 2014)
17
Q
chronic kidney disease interventions
A
- 3 systematic reviews of interventions for Chronic Kidney Disease: Mason et al, 2008; Matteson et al, 2010; Strand et al, 2012
- What did it try to change? peer support to enhance motivation for self-care, also emphasis on autonomy and reducing anxiety
- What did it include? Education provision (e.g. disease features, required dietary changes), written resources, group problem-solving sessions, encouraging/prescribing exercise plans, hypnotherapy, coaching
How was it delivered? Dieticians, psychologists, social workers, nurses, patient peers.
18
Q
cancer- FORT intervention
A
- Distinguish worrisome symptoms from benign ones. 2. Identify FCR triggers and inappropriate coping strategies. 3. Facilitate the learning and use of new coping strategies, such as relaxation techniques and cognitive restructuring. 4. Increase tolerance for uncertainty. 5. Promote emotional expression of specific fears that underlie fear of cancer recurrence. 6. Re-examine life priorities and set realistic goals for the future
- 6 group sessions
- Theory-base:- Self-regulatory model
- Uncertainty in illness model
- Cognitive model of worry
Aims to reduce anxiety and improve quality of life
19
Q
effective intervention approaches?
A
- Brief Meditation and Mindfulness Intervention for people living with diabetes and coronary heart disease (Keyworth et al., 2014).
- 6 week, web-based cognitive behaviour therapy (CBT) intervention with and without proactive weekly telephone tracking in the reduction of depression in callers to a helpline service (Farrer et al., 2011).
- Exercise therapy cost-effective in chronic heart disease patients (Oldridge et al., 2020).
Very low calorie diet (total diet replacement), structured support for weight-loss maintenance leading to remission of Type 2 Diabetes (Lean et al., 2019).
20
Q
what is cancer?
A
- According to the World Health Organisation, cancer occurs when abnormal cells grow and divide in an uncontrolled way and go beyond their usual boundaries to invade adjoining parts of the body and/or spread to other organs.
- These abnormal cells can grow and multiply over time and cause a malignant tumour.
Currently, there are over 200 different types of cancer.
21
Q
cancer prevalence
A
- According to Cancer Research UK (2018), cancer is the second leading cause of death worldwide. The number of people diagnosed with cancer is increasing, however the number of people dying is decreasing – meaning more people are surviving after a cancer diagnosis.
- Maddams et al. (2012) projections of cancer prevalence – the number of cancer survivors in the UK is projected to increase by approximately one million per decade from 2010 to 2040.
- By 2040, almost a quarter of people aged at least 65 will be living with and beyond cancer.
- “Living with and beyond cancer” refers to anyone who is having ongoing treatment for their cancer or is post-treatment.
- Cancer Research UK (2018) describe that 1 in 2 people in the UK will be diagnosed with cancer in their lifetime.
- Estimated lifetime risk of being diagnosed with cancer for individuals born after 1960 in the UK (Smittenaar et al., 2016):
- 1 in 2 (50%) for males
- 1 in 2 (45%) for females
- Cancer Research UK (2018) describe that cancer types with highest lifetime risk estimates are those with the highest past, current and projected future incidence.
- Breast, lung and bowel cancers - common for females.
Prostate, lung and bowel cancers - common for males. - 50% of people diagnosed with cancer in England and Wales will survive their disease for ten years or more.
- Cancer survival has doubled in the last 40 years in the UK.
Important to focus on interventions to improve quality of life for people living with and beyond cancer.
22
Q
what does quality of life mean?
A
- According to the National Cancer Institute (n.d.), quality of life is defined as:
- “The overall enjoyment of life… measuring aspects of an individual’s sense of wellbeing and ability to carry out activities of daily living”
- Functional concerns: [Independence, ability to do certain aspects of daily living, work capacity, mobility]
- Physical concerns: [Pain, fatigue, sleep problems]
- Social concerns: [Stigma, relationships, financial]
- Psychological concerns: [Stress, anxiety, depression, fear of recurrence]
- All these impact not just the patient but the caregiver
- Quality of life is important to both patients and caregivers.
- Patients with HaNC can often require assistance from family caregivers during-treatment & post-treatment.
- Caregivers – shown to experience poorer psychological health & higher levels of anxiety, compared with patients & with the general population (Longacre et al., 2012).
Fear of recurrence is evident among caregivers and is associated with poorer psychological health outcomes (Longacre et al., 2012).
23
Q
quality of life in HaNC
A
- The reason I’m going to talk about HaNC throughout this lecture is because this type of cancer is highlighted as one of the most debilitating cancers (Taib et al., 2018).
- It is associated with late presentation of symptoms (Brown et al., 2018) – high symptom burden & a complex cancer diagnosis.
- Can severely impact patients’ abilities to breathe, swallow & speak (Hutcheson et al., 2012).
Alters physical appearance, resulting in appearance-related distress (Clarke et al., 2014).
24
Q
interventions to support a good quality of life
A
- Quality of life concerns have led to the development of interventions such as:
- Exercise programmes
- Support groups - patient and caregiver led.
- Professional and community education to minimize labelling and stigma.
I will be focusing on exercise interventions in part 4 of the lecture.
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how does cancer affect patients psychologically?
- Cancer can have a debilitating psychological impact on patients, influencing their mental health and emotional wellbeing. This can include:
- Emotional Distress
* A cancer diagnosis/treatment can lead to negative psychological emotions such as fear, anxiety, sadness, depression and anger.
* Patients may worry about their survival, treatment side effects and impact of treatment on later life, they may fear recurrence, and the impact on their work life, social life, and their families.
- Body Image and Self-Esteem Issues
* Changes in appearance due to surgery, chemotherapy, or radiation.
* This is particularly significant in cancers requiring visible or functional changes (e.g., head and neck cancer).
- Social Isolation
* Patients may feel isolated due to physical limitations, lack of understanding from others or fear of judgement.
* Fear of being a burden to loved ones can also lead to withdrawal.
- Impact on Work and Relationships
* Cancer can cause a strain on relationships, with patients sometimes feeling misunderstood or unsupported by family and friends if they do not have a social support network around them.
* Caregiver stress and role changes in the dynamic of their relationship may lead to tension.
Patients may lose or be unable to continue with their job, causing financial stress which can burden the patient and their loved ones.
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Stigma (Goffman, 1968)
- One of the ways the psychological impact of cancer can affect a patient’s help-seeking behaviour is the influence of stigma.
- Now, according to Goffman's theory of social stigma, stigma can be classified as an attribute which is socially discrediting, causing an individual to be stereotyped as ‘rejected’ rather than accepted.
- A variety of factors influence why certain types of cancer are more stigmatized than others – for example, different cancer types have different causes, treatments, and outcomes.
- Stigma can lead to high levels of guilt, self-blame & increased distress.
- Can lead to avoidance behaviour with patients reluctant to attend appointments, leading to worse outcomes
Can be particularly apparent with head and neck cancers due to the link to smoking and excess drinking behaviours and low socioeconomic status (Hashibe et al., 2007; Anantharaman at al., 2011).
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health seeking behaviour (Zola, 1973)
- Most people seek help when experiencing worrying symptom(s).
- Seeking medical help is not always the case - many people tolerate their symptoms for some time.
- Zola identified 5 triggers which may lead to an individual seeking help:
* The occurrence of an interpersonal crisis (e.g., death in a family).
* Perceived interference with social or personal relations.
* Pressure from others to consult.
* Perceived interference with vocational or physical activity.
* ‘Temporalizing of symptomatology’ – the setting of a deadline, e.g., “If I’m not well by Monday”.
- The Occurrence of an Interpersonal Crisis:
* This trigger can explain why people are more likely to seek help during emotionally intense periods, and how it may make people more likely to see the importance of prioritizing their own health.
- Perceived Interference with Social or Personal Relations:
* This highlights the importance of interpersonal awareness in driving help-seeking behaviour
* Individuals who value relationships are more likely to act when these are at risk.
- Pressure from Others to Consult:
* This reflects the social nature of help-seeking, where external validation or concerns can push individuals to act, even if they might not recognise the need for help.
- Perceived Interference with Vocational or Physical Activity:
* This may impact productivity and motivate people to seek help if they feel they can no longer do their day-to-day activities, or the things they enjoy.
- ‘Temporalizing of Symptomatology’:
* Temporalizing is common in cases where individuals are uncertain about the seriousness of their condition.
* It gives people an ultimatum that if their symptoms are not better by X time/date, they will seek help for these symptoms
- Overall:
* Zola’s theory outlines that help-seeking is not just about symptom severity, but it is influenced by social, emotional, and practical factors.
By addressing these triggers, professionals can better understand the barriers to, and facilitators of, help-seeking behaviour, and tailor supportive approaches to individual needs and contexts.
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COM-B (Michie et al., 2011)
- ‘Capability', ‘Opportunity', ‘Motivation' and ‘Behaviour’ Model
- With these psychological theories in mind regarding what can influence behaviour, there have been frameworks developed to help support healthcare professionals to support patients to change their behaviour.
- COM-B – most widely recognised (Michie et al., 2011).
- Proposes that for behaviour change to occur, a person must have capability, opportunity and motivation to change behaviour (outlined below).
- Some people may need support across all three areas of COM-B.
- COM-B not a solution to all behaviour change challenges.
Can offer a comprehensive framework when working with patients and understanding when, and how, to facilitate change.
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Prevention
- Up to 75% of all cancers are linked to lifestyle behaviours (Stein & Colditz, 2004) and it is estimated that 44% of cancer deaths are caused by modifiable risk factors (Tran et al., 2022).
- Some of the high-risk factors include smoking, excessive alcohol use, high BMI, and dietary factors.
- Behaviour plays a crucial role in cancer prevention and mortality reduction.
- There are some important behavioural factors that can contribute to cancer prevention and improve survival rates:
* Behavioural factors
Avoid smoking
Keeping a health weight
Maintaining regular physical activity
Eating a healthy balanced diet
Cutting back on alcohol
Enjoying the sun safely
Attending screening when required
30
behaviour change intervention: exercise
- Linking in with the quality-of-life concerns discussed throughout this lecture & the psychological theories that can be used to explain behaviour – exercise can improve outcomes.
- “Exercise as medicine” – exercise is described as important as other treatments for preventing cancer and reducing treatment-related side effects.
- Exercise can reduce the chance of recurrence, decrease the development of co-morbid conditions, and improve overall quality of life (Low et al., 2014).
- 1.6 million of the 2 million people living with and beyond cancer in the UK do not achieve recommended levels of exercise (Macmillan, n.d.).
- Within head and neck cancer, only 9% of HaNC patients were reported to be physically active (Rogers et al., 2006).
Macmillan (n.d.) have made recommendations on how to encourage patients to be active, however evidence is lacking about their effectiveness and implementation, particularly in head and neck cancer.
31
why is exercise important (National Cancer Institute, n.d.)
- You might ask, how does exercise lower the risk factors for certain cancers?
- Exercise has many biological effects on the body, some of which can be used to explain associations with specific cancers. Some of these include:
- Mechanism How it can reduce the risk of cancer
Regulating Hormone Levels
* Exercise helps reduce levels of hormones such as oestrogen, insulin, and growth factors that can contribute to the growth of certain cancers (e.g., breast, endometrial, and prostate cancers).
Boosting Immune Function
* Regular exercise enhances the immune system, making it more efficient at identifying and destroying abnormal or cancerous cells.
Reducing Inflammation
* Chronic inflammation is linked to the development of many cancers (e.g., colorectal cancer). Exercise lowers systemic inflammation by reducing pro-inflammatory markers in the body.
Lowering Body Fat
* High levels of body fat are associated with increased risk of cancers such as colorectal, breast (postmenopausal), and pancreatic cancers. Exercise helps reduce visceral fat and improves body composition, lowering the risks linked to obesity.
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Exercise and HaNC
- HaNC care - huge challenge due to symptoms and side-effects, limited time-frame before-treatment & a complex care pathway.
- Patients encounter unique challenges with HaNC – argued they should be considered a distinct population within the context of physical activity prescription (Midgley et al., 2020).
- To improve activity levels in HaNC patients – we need to establish an understanding as to why patients are inactive & the barriers to, and facilitators of, participation.
- We also need to understand how to support professionals to encourage patients to improve their activity levels pre-, during, and post-treatment.
- There is a need for mechanisms within the cancer care pathway to support patients maintaining or initiating physical activity, pre-, during and post-treatment (Macmillan, n.d.) – rooted from healthcare professionals.
The COM-B model (Michie et al., 2011) is an important behaviour change framework to consider when exploring barriers to health-related behaviour change – will briefly discuss research looking into this.
