Palliative care needs of stroke patients at a tertiary care center in South India.

Objectives: Stroke survivors have palliative care needs in multiple domains, which are overlooked. Accurate estimation of these is pivotal in ensuring proper rehabilitation and planning interventions to improve quality of life (QoL). We aimed to assess the palliative care needs of stroke patients in various domains in a structured manner at the neurology service of a tertiary care center in South India. Materials and Methods: Seventy-five consecutive stroke patients presenting to the neurology service were recruited over six months with assessment across various domains including symptom burden, physical domain, activities of daily living (ADL), psychiatric/psychological domain, and QoL at baseline and with follow-up at one month and three months. Results: Despite improvement in the conventional stroke impairment measures among stroke survivors, there were significant unmet needs across various domains; 98% were severely or entirely dependent on ADL at three-month follow-up; and pain and insomnia were the most frequent (33% incidence) troubling symptoms encountered. There were substantial mental health related issues. The QoL measurement tools employed were the stroke impact assessment questionnaire (SIAQ), a novel tool and the World Health Organization Quality Of Life Brief Version (WHO-QOL-BREF). SIAQ scores at one month showed that 19 patients (42.22%) had their QoL severely affected, and 36 patients (80%) showed the same trend at the three-month follow-up. WHO-BREF scores showed that 27 (62%) did not report good QoL, and 32 (73%) were found not to be satisfied with their health at a one-month follow-up. Conclusion: There is a significant burden of unmet palliative care needs among stroke survivors in India across various domains.

Development and Validation of a New Stroke Outcome Scale (Stroke Impact Assessment Questionnaire).

Background: Stroke affects the quality of life through its devastating effects on physical, psychological, social, and economic domains. Patient-reported outcome measures help to capture the patient's perspective to changes in the quality of life. The available stroke-specific outcome measures of stroke do not comprehensively measure all the domains. Objective: We describe the development and validation of the Stroke Impact Assessment Questionnaire (SIAQ) an interviewer-administered new instrument developed using patient-centered approaches to assess the long-term problems of stroke survivors. Materials and Methodology: We used a sequential exploratory mixed methods approach (QUAL → QUAN) to develop the SIAQ. The design involves an initial qualitative phase aimed at generating the item pool and a subsequent second phase aimed at testing of items using quantitative techniques (Psychometric evaluation). Result: SIAQ, a thirty-item tool, under the eight domains (sensory, motor, social, economic, emotional, behavioral, cognitive, and communication) emerged from Principal Component Analysis. The factor loadings ranged from 0.421 to 0.880. The intraclass coefficient in test-retest reliability r is 0.958 (95% CI 0.9249-0.9799) and in interobserver reliability is 0.9473 (95% CI 0.9125 - 0.9733). The internal consistency Cronbach's alpha for the final 30 item tool was 0.88. Conclusion: SIAQ is a culturally appropriate psychometrically robust questionnaire assessing the long-term outcome of stroke. However, SIAQ is applicable only in stroke survivors for up to 65 years.