Quantifying Quality of Life after Stroke.

How do you define the quality of life? As a measure of how easily and successfully one can accomplish activities of daily living? Eating, bathing, dressing, walking, talking, etc.? Which on an ordinary day are taken for granted as a “normal” thing! What is so special about them! Or, do we measure the quality in terms of how successful we are in relation to our commitments as responsible members of civic society? Earn a living, have satisfying relationships, be the caregiver, parenting, etc., Or, do we measure in terms of fulfilling ambitions, reaching goal posts, “living the dream”, being happy!? How do we define the quality of life when it is quintessentially a “genie in a bottle !”It's as complex as the proverbial “pandora's box !”

Strokes deprive patients of abilities generally taken for granted – the use of fingers, the sense of touch, the ability to swallow, etc. Consequently, the world the patient formerly navigated with adaptive ease is suddenly rife with previously unimagined obstacles. No other illness is such a direct assault on the integrity of the self, both body and mind.

Yet, it is paramount to quantify the quality with scores for measured activities and validated for geographic, cultural, educational, and economic backgrounds.[1]

Stroke can, in one strike, suddenly and irrevocably change a life forever! Hence, the adage that stroke is a life-altering disease!

However, stroke need not necessarily lead to death or disability. The road to recovery begins in the hospital, from minutes to days after the onset of symptoms.[2] During this crucial period of initial medical management, the patient undergoes a rigorous diagnostic assessment. In each case, the goal is to determine why the stroke happened, how best to treat it, how to avoid complications, how best to rehabilitate, and how to prevent future events.

Treatment of hospitalized stroke patients should be a multidisciplinary effort to prevent complications and manage specific neurological sequelae.[3]

Time-sensitive management with enormous advances in acute stroke therapies has vastly mitigated the mortality and morbidity following stroke, giving immense hope to better stroke outcomes.[2] There is a paradigm shift in our approach to a stroke victim from masterly inactivity to overarching aggression to salvage the critically perfused and jeopardized cerebral tissue.[2]

But, despite this tectonic shift, there continues to be a disability, and in fact, stroke is the largest cause of disability globally.[14] The quantum of disability spans the entire spectrum of physical, mental, emotional, and social issues. Hence, quantifying disability cannot merely be measuring power, tone, balance, special senses, and the spinoffs in the activities of daily living! We rarely measure the full impact of cognition, behavior, and the emotional roller coaster on these very activities of daily living, which largely have been unexplored/ignored in the available scales of measuring QOL currently.

Yet, the measurement of QOL remains integral to finding holistic solutions to life after stroke. In its entirety and true length and depth of the onslaught of stroke on the brain that was once healthy and ruled over life's small and big victories and joys.

Can a person be happy after a stroke? Probably not. Can he become hopeful, revive lost confidence? Can he regain enough functionality to become independent in his living? Can he get integrated back into society as a useful, productive individual? It is a big “yes” to all these and more! Perhaps the degrees of such a recovery process vary, true to how complex and varied strokes can be. It is a perfect example of precise and personalized medicine which will determine life after stroke.

However, calculating and knowing the impact of poststroke effects on measured scales of QOL, which can be unique to the socio-cultural ethos of society, will be inherently valuable in designing interventions to address these issues.

Dhandapani et al.[5] made a valiant effort to gather such information using systematic review and meta-analysis of relevant such articles on QOL assessment in the Indian context. They encountered significant diversity in variables, and perhaps obtaining conclusive evidence may not have been successful. Among the 16 studies included, only 8 studies were used for meta-analysis as there were inadequate data in the other 8 studies. The included studies were observational studies which the authors had acknowledged as a limitation. We wonder why authors chose to include only observational studies and not randomized controlled trials. Moreover, the heterogeneity of the included studies was very high (>97%). But similar such attempts will remain essential to gather larger evidence in designing focussed approaches to address the relevant domains in QOL which need immediate and sustained intervention.

Adding on exclusive aspects of economics, access, affordability, and availability of stroke care in the stroke chain of survival, be it stroke prophylaxis, physical rehabilitation, and providing sustenance for day-to-day existence, goes a long way to cater to significantly better stroke outcomes. As India is a “nation with many nations,” identifying different goals and adapting different strategies according to the prioritized areas in different regions of the country may be a more realistic way to optimize stroke care in India rather than design a “one glove fit all approach.”[6] Physician education remains a cornerstone in bettering stroke care and outcome across different practice settings in India. They need to be appraised and educated regarding the evidence-based treatment of stroke. Developing patient information booklets which can be disseminated at clinic waiting places and at the time of discharge will help enhance knowledge and possibly affect attitude and practices. Quality improvement measures also need to be factored into the program in the absence of which, a clear perspective of the changes with intervention cannot be deciphered.

Management algorithms for stroke management feasible and possible in primary, secondary, and tertiary health centers across India need to be devised, vetted, and validated by subject experts and stakeholders across the country.

The challenges for an optimal rehabilitation of stroke patients include a shortage of trained personnel for providing rehabilitation and physiotherapy to stroke patients, lack of stroke-focused training for the therapists, shortage of rehabilitation centers, unqualified therapists, and limited facilities for transporting disabled stroke patients daily for physiotherapy. Some solutions can be employing physiotherapists at district-level hospitals and all designated primary stroke unit centers in the districts. Educating and training the carers of stroke patients who can then deliver the same therapy session at home may augment recovery.

Involving accredited social health activist (ASHA) workers into the program for delivery at the primary health care (PHC) level may be one option. Providing incentives and giving protected time to the ASHA workers involved in this program may help sustain the program. Amalgamating evidence-based holistic medicine into this activity such as yoga, ayurveda, and other Indian systems and indigenous systems of medicine will help promulgate the concept of rehabilitation and also overcome the barriers of availability, accessibility, and acceptability of the public to the practitioners providing this therapy.

Sustainability of such actions is imperative to keep up the momentum till the well-oiled machinery of the stroke chain of survival comes into existence.

Indeed, these studies exploring what happens to life after stroke beyond the realms of hospital visits and in-depth analysis in the community are extremely poignant steps in the right direction.