Assessment of quality of life of stroke survivors and their caregivers presenting to a tertiary care hospital in Pakistan

Objective: To determine the quality of life of stroke survivors and their caregivers presenting to a tertiary care setup. Method: The descriptive study was conducted from July to December 2019 at the Neurology Department, Pakistan Institute of Medical Sciences, Islamabad, Pakistan, and comprised patients of either gender with ischaemic or haemorrhagic stroke aged 40-70 years and their caregivers. Data was collected using the stroke-specific quality of life Scale and the caregiver quality of life questionnaire. Data was analysed using SPSS 20. Results: Of the 80 patients, 50(62.5%) were males and 30(37.5%) were females. The overall mean age was 61.46±11.80 years, and 56(70%) were aged >55 years. Among the patients, speaking power, mobility and mood were more aﬀected with mean levels of 15.51±8.63, 22.63±8.33 and 19.08±7.05, respectively. The domains of social role, self-care and upper extremity function were also aﬀected with mean values of 19.022±7.06, 15.71±8.81 and 18.88±7.02, respectively. Among the caregivers, the levels of physical wellbeing and functional wellbeing were high 15.07±5.65 and 15.35±5.76, respectively. There were diﬀerences in terms of age and gender but the diﬀerence was not significant ( p >0.05). Conclusion: The quality of life of stroke survivors was low, and that of caregivers was also quite compromised.


Introduction
Stroke, also known as cerebrovascular disease, is further divided into haemorrhagic stroke and ischaemic stroke.Haemorrhagic stroke occurs when there is increased blood flow in the cranial cavity outside vessels due to rupture or damage, and ischaemic stroke refers to decreased blood flow in the cerebral vessels, leading to a decrease in oxygen and nutrient supply. 1 The incidence of stroke, ischaemic and haemorrhagic has increased in the past two decades.However, the incidence is higher in low-and middle-income countries (LMICs) than in high-income countries (HICs).Deaths and morbidity due to stroke have also risen. 2 Stroke is the leading cause of mortality and morbidity worldwide.However, the prevalence has declined in the West.It is rising in South Asia, including Pakistan, where the risk factors for stroke are enormous, with diabetes being on the top.According to estimates, the annual incidence of stroke in Pakistan is 250/100,000, and one study conducted on a small group of people from Karachi found a prevalence of 4.8%. 3st people recover after a stroke, but some do not, and they require assistance with their daily chores.They cannot avoid unnecessary complications, cannot eat, communicate, ambulate, and perform daily chores.Medical problems, including aspiration pneumonia, deep vein thrombosis (DVT), bedsores and pulmonary embolism, can occur after a stroke. 4roke affects the quality of life (QOL) of both the patient and the caregiver.With recent advancements in the healthcare system, people suffering from stroke survive, but they still must cope with the functional, psychological and social sequel.Cerebrovascular accidents further deteriorate a patient's life and affect QOL.According to the World Health Organisation (WHO), the QOL is defined as individuals' perception of their position in life in the cultural context and in the value systems in which they live and concerning their goals, expectations, concerns and desires. 5Thus, the term QOL covers many meanings constituted by a variety of factors, objective and subjective, reflecting knowledge, experience and values of individuals and communities in a cultural, social and historical context. 6L assessment has been an essential tool for more than 30 years in stroke patients and caregivers. 7In 2009-10, a study in a Nigerian hospital on QOL among stroke patients demonstrated that decline in functional status and depression were independent risk factors affecting the QOL in post-stroke patients. 8e current study was planned to assess the QOL of stroke

Patients and Methods
The descriptive study was conducted from July to December 2019 at the Neurology Department, Pakistan Institute of Medical Sciences (PIMS), Islamabad, Pakistan.After approval from the institutional ethics review committee, the sample size was calculated with confidence level 95%, alpha error 5%, and the anticipated proportion with the stroke 4.8%. 3The final sample size was adjusted to accommodate a non-response rate of 15%.The sample was raised using consecutive sampling technique.Those included were patients of either gender aged 40-70 years who presented with ischaemic or haemorrhagic stroke.The critically ill patients in intensive care unit (ICU) settings were excluded.
Data was collected after taking written informed consent from all the subjects.The participants were interviewed by a single researcher to maintain data continuity and quality.A direct interview was preferred for the QOL instruments because of doubts regarding the potential difficulty of reading and literacy among the participants.
The QOL of the patients was evaluated using the strokespecific quality of life Scale (SS-QOL) 9 tool, whereas the caregiver quality of life questionnaire (CQLQ) 10 was used to assess the caregivers' QOL.The SSQOL questionnaire consists of 49 items divided into 12 subdomains; energy, family role, language, mobility, mood, personality, social role, self-care, thinking, upper extremity function, vision, and work productivity.The CQLQ consists of 19 items divided into 5 domains; health history, physical, social/family, emotional, and functional wellbeing.
Data was analysed using SPSS 20.Continuous numerical variables were expressed as mean, standard deviation, and standard error of the mean (SEM).Independent sample ttest was used for comparing mean indices of QOL of stroke survivors and caregivers according to gender and age.The level of significance was set at p<0.05.
Among the caregivers, the levels physical wellbeing and functional wellbeing were high 15.07±5.65 and 15.35±5.76,respectively (Table 2).There were differences in terms of gender (Table 3) and age (Table 4), but the difference was not significant (p>0.05).

Discussion
The current study found that the QOL of stroke patients was relatively low and compromised.[13][14] The current study also observed that the QOL of the caregivers was affected, as the levels of physical and functional wellbeing were significantly low.Earlier studies have also reported a similar trend 15 and the QOL decreased as the burden increased. 16Evidence suggests that stroke caregivers often report more somatic and depressive symptoms, sleep disorders and social isolation.Their QOL is poorer than the general population. 17Another study found that the low functional status of stroke survivors was found significantly related to lower QOL and higher caregiver strain index of the caregivers. 18Another longitudinal study found that caregivers had significantly lower averages in most domains of QOL. 19 the present study, the QOL was stratified according to gender and age, but no significant differences were observed.It was noted that the self-care of female stroke survivors was more affected than their male counterparts, and the work productivity of patients aged >55 was also more affected.With respect to caregivers' QOL, females had emotional wellbeing issues.Other studies have reported similar findings. 15,20,21e findings regarding compromised QOL of stroke survivors and their caregivers have significant implications and demand urgent and focussed interventions to minimise their sufferings.One of the options could be health education and proper counselling of patients and their caregivers by nursing staff and medical doctors. 13nother solution could be the availability of special health units and departments with appropriate facilities and services for the management and sustenance of stroke survivors.
The current study has its strengths being among the first attempts in the local context to evaluate the QOL of stroke survivors and their caregivers.Besides, it had a large sample size, and compared the QOL with gender and age.
In terms of limitations, the sample size was based on the prevalence of stroke and not on the primary outcome measure, which was the QOL of stroke patients and their caregivers.

Conclusion
The QOL of stroke survivors was found to be low.Moreover, the QOL of caregivers was also quite compromised.

Acknowledgement:
We are grateful to all the respondents as well as to the administrative and clinical teams working at the Pakistan Institute of Medical Sciences, Islamabad, to Mr Saleem Abbasi, who managed, analysed and interpreted the data.
Assessment of quality of life of stroke survivors and their caregivers presenting to …….
SD: Standard deviation, SEM: Standard error of mean
SD: Standard deviation, SEM: Standard error of mean

Table - 3
: Quality of life (QOL) of stroke patients and caregivers according to gender.

Table - 3
: Quality of life (QOL) of stroke patients and caregivers according to gender.