Stroke improvement plan: equality impact assessment

4. Key Findings

4.1 Age

Stroke is more common in older people and stroke incidence is strongly related to age^[8]. 10% of those aged 75 and above in a survey reported ever having had a stroke^[9].

The survey found that the prevalence of stroke was 3% for all adults.

By mid-2043, it is projected that 22.9% of the population will be of pensionable age, compared to 19.0% in mid-2018 with increasing numbers in the ‘oldest old’ age categories and a doubling of the number of people aged 90 and over between 2019 and 2043^[10]. This is reflected in the disease burden for Scotland, including cardiovascular conditions, which are forecast to increase substantially for those 65 years old and above, with the largest increases for the 65 to 84 years age group^[11].

While the incidence of stroke is lower in the under 75s^[12], One review study from 2020 indicated that stroke at a young age is an increasing problem with long-term psychological, physical and social consequences with a wide variety of possible underlying risk factors. The same study also reported a higher incidence among young black and Hispanics in the USA^[13].

Older people may face stereotypes in their treatment such as being dependant on others, with failing physical and mental health and their needs may not always be well understood^[14], highlighting the need for equality of care to ensure older people do not face barriers to optimal care. It is also recognised that older people, among other groups are less likely to be users of the internet^{[15] [16]} or may be less confident in the use of technology than the general population, and therefore could be adversely affected by increasing use of digital models of care. Innovative, digital means of accessing care have been particularly prevalent during the Covid-19 pandemic and are set to remain in place as part.

4.2 Disability

Stroke has been cited as the single biggest cause of disability in adults^[17]. It is estimated that 50% of people who have experienced a stroke will live with permanent or chronic disability. This includes the risk of paralysis, aphasia or dysphagia, sensory problems, fatigue and mental health problems^[18]. 1 in 12 stroke survivors will have to move into a care home because of disability caused by their Stroke^[19].

Stroke is associated with health risk behaviors and mitigated by health promoting behaviors, behaviors around diet, exercise, smoking, alcohol and self-management of underlying conditions (such as high blood pressure, high cholesterol, atrial fibrillation and diabetes) can all increase or decrease individual risk of Stroke^[20]. Health behavior has been shown to be shaped by socioeconomic gradients with people experiencing social deprivation smoking more, exercising less and having poorer diets.^[21]

Alongside physical disabilities as a result of stroke, intellectual disability is also found to be a diagnoses^[22]. Mortality among people with intellectual disabilities has been reported to be markedly elevated in comparison with the general population and receive poorer quality care^[23]. A study^[24] conducted in Scotland, highlighted the potential for people with learning disabilities to be effectively consulted regarding health management and for their views to inform service development regarding stroke cardiovascular disease care.

Stroke research and delivery has traditionally concentrated on acute and early phases of recovery, however there are significant long-term physical and emotional consequences of stroke and many survivors, and their families report unmet needs in relation to these consequences^[25].

4.3 Severe Mental Illness

It is recognized that mental health disorders play a significant role in the burden of disease in Scotland^[26]. The rate of burden of disease in Scotland due to mental and substance use disorders in the most deprived areas has been reported as 4.4 times the rate in the least deprived areas.^[27]

Individuals living with severe mental illness (SMI) die 10-20 years earlier than the general population, long-term and physical conditions such as stroke contribute substantially to the mortality gap.^{[28] [29] [30]} Stroke is 2-3 times more common in people with SMI than the general population^[31]. In relation to cardiovascular disease (CVD) patients with SMI have 53% higher odds of CVD than the general population^[32].

Patients with TIA or minor stroke are at sustained risk of cardiovascular events and medication adherence and smoking cessation decrease by time since TIA^[33]. Another study also been found that individuals with SMI have lower prescription/referral and adherence to secondary prevention measures including pharmacological, lifestyle and rehabilitation care than equivalent patients without SMI^[34].

A Scottish study^[35] found pre-existing severe mental illness was associated with higher risk of stroke and highlighted the need to better understand and address the reasons for this and about how SMIs relates to stroke prognosis and delivery of care. There is therefore, a gap in our understanding of the relationship between SMI’s and stroke.

The NHS Race and Health Observatory^[36], informed by their stakeholder engagement groups suggested Roma, Gypsy and Irish Traveller and Chinese groups may be reluctant to seek help from mental health services due to a lack of trust.

4.4 Sex and Gender

In the Scottish Health Survey 2021^[37], men reported a higher overall prevalence of stroke compared with women, with 3% of men and 2% of women reported that they had experienced a stroke.

A 2022 study^[38] noted that the lifetime risk of stroke is higher for women than men and highlighted that most of the data on stroke did not separate sex and gender and therefore, many of the findings for sex differences may represent the combined impact of both sex and gender. A UK study^[39] from 2020 found that the incidence of stroke remained higher among men than women, despite several risk factors more strongly associated with the risk of any stroke in women compared to men, particularly type one diabetes, obesity, high blood pressure and atrial fibrillation. In Scotland, in seven out of the ten years, the adjusted mortality rate was slightly higher for females.^[40]

A US study highlighted there is limited data on the epidemiology of stroke and risk factors among people who identify as nonbinary and intersex, with the majority of data focusing on binary transgender individuals and suggested changes in how to incorporate sex and gender in research, education, and clinical care were needed^[41]. A US paper^[42] in 2021 referred to the transgender population experiencing significant stressors that affect cardiovascular health across their lifespan and also highlighted the need for further research on this topic to address gaps in the literature.

4.5 Pregnancy and maternity

Stroke can cause devastating complications during pregnancy; ischemic and hemorrhagic stroke occur in approximately 30 in 100,000 pregnancies^[43]. Women with preeclampsia were found to be at a 6-fold higher risk of stroke. A Swedish study^[44] of more than one million pregnant women found that while the overall risk of stroke was low in women of childbearing age, stroke risk peaked in the peripartum and early postpartum periods.

Women were found to be at an increased risk of stroke due to oral contraceptive use and hormone replacement therapy in a recent study^[45] based on the UK Biobank. UK Stroke Guideline (2023)^[46] recommendations recognise that there is now evidence that oestrogen increases the risk of cardiovascular events including ischaemic stroke both when used by younger women as the combined oral contraceptive and by postmenopausal women as hormone replacement therapy.

4.6 Gender Reassignment

An estimate of the numbers of trans people in Scotland stands at a commonly used figure of 0.5% of the population, just under 24,000 adults.^[47] The Scottish Government’s NHS gender identity services: strategic action framework 2022 – 2024 includes a number of recommendations to improve access to and reduce waiting times for these services.

A literary review in 2022^[48] found that while overall, the available data for cerebrovascular disease was equivocal, there seemed to be an increased long-term risk of ischemic stroke in transgender women on gender affirming hormone therapy compared to both sex assigned at birth men and women. The same study found that while data was scarce and not consistent, there seemed to be no increased risk of cardiovascular disease, myocardial infarction or stroke in transgender men on hormone therapy. Another study from 2022^[49] suggested that with regard to risk factors, the effects of gender-affirming hormone therapy on risk of stroke needed to be better quantified, particularly for transgender women.

A US study highlighted there is limited data on the epidemiology of stroke and risk factors among people who identify as nonbinary and intersex, with the majority of data focusing on binary transgender individuals and suggested changes in how to incorporate sex and gender in research, education, and clinical care were needed^[50]. A US paper^[51] in 2021 referred to the transgender population experiencing significant stressors that affect cardiovascular health across their lifespan and also highlighted the need for further research on this topic to address gaps in the literature.

Access to health care is a major health determinant for transgender and non-binary individuals^[52] Black and minority transgender and non-binary people are more likely to face barriers and discrimination to and within health care services^[53]. In 2016 the Race Equality Foundation published a briefing paper^[54] which called for improved and equitable access to health services for transgender and non-binary black and minority ethnic people and additional training for all health professionals to support development of this care.

Diagnostic overshadowing can also occur in healthcare treatment of transgender and non-binary people. This is where physical and mental health concerns are tied to their gender/transition status rather than being understood and cared for in isolation^[55].

A literary review from covering a six and half year period^[56] concluded that transgender adults experienced widespread adversity and barriers to safe and equitable healthcare. A paper from 2022^[57] noted that any healthcare approach to transgender people must consider their specific needs, so strategies must be adopted to provide this group with quality, individualized, holistic, and respectful healthcare.

4.7 Sexual Orientation

A Scottish Health Needs Assessment (HNA) research findings report^[58] found LGBT+ people face health inequalities on every measure of wellbeing.

A literary review from 2016^[59] found that gender and sexually diverse populations experience reduced access to quality health care and under-utilization of health care due to individual and systemic discrimination. There is also evidence that LGBT+ people are typically overlooked or excluded from participation and engagement. A US paper^[60] in 2021 referred to the transgender population experiencing significant stressors that affect cardiovascular health across their lifespan and also highlighted the need for further research on this topic to address gaps in the literature. A recent US study^[61] found that there was limited data on stroke and risk factors among people who identify as nonbinary and intersex, with the majority of that data focusing on binary transgender individuals. Another US study^[62] from 2021 found that Hispanic and Asian sexual minorities had lower rates of awareness of heart attack and stroke symptoms.

A component of stroke rehabilitation is relationship and sexuality recovery and support. Although this is important element for stroke survivors and their partners, research shows that post-stroke sexuality is rarely discussed in rehabilitation^[63]. Guidelines^[64] recommend tailored information and access to psychosexual services after discharge and at 6-month and annual reviews for stroke survivors.

4.8 Race

The NHS Race and Health Observatory rapid evidence review^[65] has set out the role of a number of factors in perpetuating health inequalities in ethnic minorities experience of, access to and outcomes across a range of healthcare services.

In a similar finding to the one in Severe Mental Illness section, An Equality and Human Rights Commission research report^[66] indicated barriers to accessing health services for Gypsy / Traveller communities included difficulties registering with GPs, poor staff attitudes and lack of trust of services because of previous experiences. An analysis^[67] of health inequality and ethnicity in Scotland using self-reporting found very stark results for Gypsy / Traveller communities regarding health inequalities and in relation to older women from Indian, Bangladeshi and Pakistani communities.

The British Medical Association, in their response^[68] to the Race Report (2021) from

the Commission on Race and Ethnic Disparities (CRED) criticized the report In particular, in its finding that it did not find evidence of structural race inequality as a major factor affecting outcomes and life chances. The Institute of Medicine^[69] has developed a framework to understand racial inequalities in health, this is structured through patient, provider, system and policy level disparities.

Inequalities affecting ethnic minorities over a spectrum of healthcare including access to, uptake of services and quality of care was acknowledged in a 2017 study and cites further sources.^[70] A 2005 study found that ethnic groups have higher rates and more severe cases of stroke^[71]. The same study found that while outcomes of mortality are higher in ethnic groups, however, inequalities in other clinical outcomes were understudied and not fully understood^[72]. In a 2011 study, half of stroke survivors reported unmet needs between 1 and 5 years after experiencing a stroke, with this reporting of unmet needs greater amongst ethnic minorities^[73]. A Danish study^[74] from 2020 found ethnic minorities had a higher risk of stroke and that incidence and post stroke mortality appeared to vary among ethnic minorities compared with those Danish born. It also noted the importance of having good quality registers to support these types of findings. A US study^[75] concluded that risk of stroke recurrence among older Americans hospitalized for ischemic stroke was higher for blacks compared to whites.

A 2018 UK study^[76] found the incidence of first-ever-stroke is higher in the Pakistanis compared with the Whites in Bradford. Stroke was found to be more common in Black people and people from South Asian groups, particularly those in the Pakistani and Bangladeshi ethnic groups^[77]. A recent UK study^[78] reported that those from ethnic minorities had earlier onset of an acute stroke and a two to fourfold increase in many stroke-related adverse outcomes and death compared with Caucasian patients.

The British Heart Foundation have highlighted that people from African or African Caribbean backgrounds are at higher risk of developing high blood pressure and having a stroke than other ethnic groups^[79]. People from a minority ethnic background are more likely to live in the most deprived areas of Scotland^[80]. They are also likely to face a number of barriers to effective communication about their health. This can include difficulties in accessing healthcare in an appropriate language and cultural context^[81]. A systematic review of ethnic inequalities in access to, experiences of, and outcomes of digital healthcare was also a recommendation of the NHS Race and Health Observatory work.