Measuring HRQoL in post-stroke patients is complex [12]. It is influenced by: conceptual difficulties; variability in the dimensions used to examine HRQoL; different degrees of disease advancement; and the necessity to incorporate the individual needs and preferences of the patient. Hence, measuring improvement in the HRQoL of post-stroke patients requires a complex analysis [13]. Studies undertaken in recent years confirm the view that measuring the neurological state and disability of post-stroke patients does not sufficiently reflect their general functional status. Conversely, measuring HRQoL can offer a more comprehensive view of the patient’s current state.

Questionnaires measuring HRQoL after stroke are used mainly to reach two goals. The first goal is to classify patients according to their current psychological and physical abilities or prognosis. For example, when planning to evaluate the effectiveness of a post-stroke rehabilitation program, one may exclude patients with minimal damage to the CNS and those with severe damage to the CNS such that neither group would note significant improvement through rehabilitation. The second goal is to achieve a multidimensional measurement of change through treatment or rehabilitation in the health status and wellbeing of patients.

Though many questionnaires are available to measure HRQoL in stroke patients, only a few can be recommended for widespread use. This is due to a lack of reliable studies concerning the psychometric properties of certain questionnaires. The most often used general questionnaires are the Sickness Impact Profile (SIP), Short Form Health Survey (SF-36), and Nottingham Health Profile (NHP). Other questionnaires used in post-stroke patients include: Karnofsky Performance Status Scale (KPSS); London Handicap Scale; Stroke Adapted Sickness Impact Profile (SA-SIP30); EuroQoL-5D (EQ-5D); Short Form Health Survey 12 (SF-12); Stroke Impact Scale (SIS); McMasters Health Index Questionnaire; Quality of Life Index (QLI); Schedule for the Evaluation of Individual Quality of Life-Direct Weight (SEIQoL-DW); Quality of Wellbeing Scale (PGWB); Newcastle Stroke-Specific Quality of Life Measure (NEWSQOL); Burden of Stroke Scale (BOSS); and the Stroke Specific Quality of Life Scale (SS-HRQoL Scale) (see Appendix).

KPSS was one of the earliest instruments used to measure the functional status and physical activity of patients with chronic diseases (including stroke). At present, it is seldom used. This instrument measures the ability of subjects to work and look after themselves. It also gauges the need for different types of assistance, including the need for hospitalization. One should not forget about detailed scales that allow measurement of specific functional dimensions. For example, the Mini Mental State Examination (MMSE) is used to measure cognitive functioning; the Barthel Index (BI) and the Modified Rankin Scale (MRS) measure disability; and depression can be assessed using the Beck Depression Scale or the Zung Depression Scale (see Appendix). Disability scales (e.g., BI or MRS) correlate poorly with the psychosocial status of patients. Hence, they cannot be used as the only measurements of HRQoL. However, they are used to determine the relationship between an observed level of disability and HRQoL dimensions related to physical health. For example, it has been found that the BI, which measures independent functioning on a scale from 0 (i.e., full dependence) to 20 (i.e., full independence), and the MRS correlate well with the results of the Health Utilities Index (HUI) questionnaires versions 2 and 3, as well as the EQ-5D Index. There are also depression scales which correlate well with the second part of the EQ-5D questionnaire (i.e., EQVAS) [14].

Attention has recently been drawn to the fact that certain post-stroke patients cannot rate their HRQoL as a result of severe neurological deficits. Hence, questionnaires using utility measures completed by spouses or caregivers should be used. The results obtained reflect adequately the HRQoL of this group of patients.

Depression, physical disability, and aggravated cognitive deficits resulting from damaged gray matter and white matter are the main clinical factors influencing decreased HRQoL in stroke patients. Other factors that affect worsening QoL include: difficulty in being understood; poor memory; secondary personality disorders; decreased intellectual functioning; and difficulty in controlling and expressing emotion (e.g., apathy, depressed mood).

Within the first year after stroke, the prevalence of depression in patients with hemiparesis is estimated to be 25-50% [15]. Already in the acute phase, during hospitalization, depression affects ≈20% of patients with stroke. This percentage increases with time. A review by Hackett et al. [16] of studies examining the relationship between stroke and depression estimated its prevalence to be ≈33%. Depression after a cerebrovascular incident does not remain in a direct relationship with the exacerbation of neurological deficits. However, depression tends to occur most often in patients affected by a stroke in the frontal areas of the left hemisphere [17] and in some subcortical areas [18]. Despite relatively minor motor deficits, depression after stroke may inhibit or not permit rehabilitation. Post-stroke depression is therefore a strong determinant of HRQoL in patients, and also influences their long-term prognosis [18].

When discussing the HRQoL of stroke patients, special attention should be paid to the development of cognitive dysfunction. This is due to its direct influence on HRQoL as well as difficulties connected with completing the self-assessment type of questionnaires. However, questionnaires have recently been developed which should remedy this problem [19]. Cognitive dysfunction and difficulties connected with independently completing questionnaires occur regardless of the location of the stroke. For example, a left-sided stroke usually causes dysphasia as well as difficulty with reading and writing. Conversely, the result of a right-sided stroke may be anosognosia (i.e., denying one’s new physical restrictions and functional handicaps). This is sometimes called “hidden dysfunction” which, at cursory examination, may be overlooked by patients and physicians even though it occurs in a significant number of patients [20]. It is characterized by: rapid exhaustion following intellectual activity (e.g., concentration and memory); susceptibility to irritation; mood swings; decreased tolerance for stress; and sensitivity to sound and light (“astheno-emotional syndrome”).

The North East Melbourne Stroke Incidence Study (NEMESIS) study [21] found that, 2 years post-stroke, ≈50% of patients rated their HRQoL as “low” and 25% rated it as “very low” (i.e., < 10% of the HRQoL of healthy individuals). Other studies found that, 6 months post-stroke, physical and psychosocial functioning were the most negatively affected HRQoL dimensions, whereas “treating life as a value” was one of the least affected dimensions. Despite a decrease in HRQoL in the dimension of physical functioning, the authors of these studies reported that patients preserved a positive HRQoL in the dimensions of life satisfaction and family situation. Interestingly, despite definite restrictions in functioning, the level of life satisfaction of stroke patients may be relatively high even after a few months after the incident.

Self-rated HRQoL is dependent upon one’s current neurological state and the ability to care for one’s self, i.e., functional independence. It seems that rehabilitation geared towards increasing the independence of stroke patients, decreasing isolation, treating depression, and strengthening social support may contribute to improving the HRQoL of stroke patients.

In the early stages after stroke, the HRQoL of patients is determined by various demographic and clinical factors, including age, sex, level of social support, quality of medical care, severity of stroke, depression, and concomitant diseases [22, 23]. Degree of independence in everyday functioning is one of the most important factors influencing HRQoL. For example, van Exel et al. [24] confirmed that the HRQoL of stroke patients is strongly associated with their degree of independence in everyday activities.

In this study, stroke patients, who regained complete independence 2 months and 6 months after the incident, rated their HRQoL (using EQ-5D) at levels similar to the HRQoL of age-matched individuals who had not suffered a stroke (i.e., ≈75% of maximum HRQoL). However, in stroke patients significantly or completely dependent upon external care, HRQoL was very low (i.e., from −14% to +10% of maximum HRQoL).

One method for improving the independence of stroke patients is physical rehabilitation. This focuses especially on paralyzed upper limbs, which supports longterm improvement in HRQoL even after stopping rehabilitation exercises.

A study measuring changes in HRQoL using SF-36 occurring between the fourth and sixteenth month post-stroke in a group of 304 patients [25] found improvement after 1 year in terms of the socioeconomic and psychological dimensions of HRQoL and deteriorating values for physical functioning. Improvement in HRQoL was greater for men, younger patients, and those without symptoms of depression. The psychophysical state of patients significantly influenced the HRQoL of their informal caregivers, whose HRQoL was found to be equally as low in the emotional and psychological dimensions of SF-36 as in patients [25]. This observation, as suggested above, further shows the burden that caring for a stroke patient may have on family functioning [26]. This study also confirmed the chronic influence of depression on the HRQoL of stroke patients.

The NEMESIS study [27] recently published their results involving almost 1,000 patients; 5-year survival was noted in 45%. The vast majority of patients rated their HRQoL as “poor”, and 20% as “very poor”. Old age, low socioeconomic status, and deepening neurological deficits were predictors of poor HRQoL 5 years after stroke. It was also shown in other studies that the risk of death due to stroke was highest in the lowest-income group in men and women.

A study by Kase et al. [28] involving participants from the Framingham program found that the cognitive functioning of stroke patients (measured using MMSE) was disrupted before the incident. It was therefore subject to significantly greater deterioration, especially in the case of patients with widespread, left-sided stroke. A similar relationship was observed on numerous occasions if decreased HRQoL acted as an early predictor for first stroke [29, 30]. In this study, which looked at the last 13 years of patients’ lives, a gradual decline in intellectual functioning took place independently of concomitant depression, leading researchers to suggest that two processes were involved.

Other factors leading to a greater decline in cognitive functioning in stroke patients include untreated or inadequately controlled hypertension that is present before the incident. Hypertension leads to chronic, subclinical brain damage, resulting in a decreased ability to adapt in cases of stroke.

Another observation from the Framingham study concerns dementia after stroke [6]. Having a stroke doubles the risk of developing dementia, regardless of location and severity, sex, age, and concomitant risk factors (e.g., hypertension, AF, diabetes mellitus (DM), smoking). In this study, post-stroke dementia developed in 19.3% of patients, with the risk of development being higher in younger patients with a higher level of education. In the pharmacotherapy of post-stroke dementia, donepezil (a reversible inhibitor of acetylocholine esterase) positively influences the HRQoL of patients [31].

Stroke mostly affects individuals in advanced age, and is the main cause of disability in this group. In the acute phase of stroke, patients may require mechanical ventilation. Measured after 6 months, it has been found that such a course leads to definite improvement in the functional state and HRQoL (i.e., better self-rated physical health, measured using SF-36) of patients. However, this is the case in only one-quarter of patients of advanced age who survive the acute phase.