A Quality-of-Life Instrument for Young Hemorrhagic Stroke Patients

Abstract

Background and Purpose-Hemorrhagic stroke has a high initial mortality rate. While survivors often recover motor function, many experience significant changes in their quality of life (QOL). Available outcome measures assess neurological impairment, disability, or handicap, yet often inadequately characterize the full impact of a stroke on patients' lives. In this study, we develop and validate a QOL instrument specific for young patients with hemorrhagic strokes. Methods-Methodological guidelines for instrument development were initially established. Based on the content of 40open-ended patient interviews, a 54-item instrument (HSQuale) was developed. The reliability (test-retest and internal consistency) and validity (content and construct) of HSQuale were assessed in another 71 patients (18 to 49 years of age, 63% women, 77% white), at 1 year after their hemorrhagic stroke. Comparisons were made between HSQuale and other commonly used outcome measures. Results-HSQuale demonstrated reproducibility (test-retest , 0.40 to 0.96) and internal consistency (Cronbach ␣ Ն0. 80 for 5 of 7 domains). HSQuale scores had broad frequency distributions (Յ33% of subjects scored in any single score decile), avoided ceiling effects found for other outcome measures (Barthel Index and Short Form-36), and discriminated among clinically distinct subject groups (eg, intracerebral versus subarachnoid hemorrhage patients). Conclusions-HSQuale is a reliable and valid QOL instrument. Compared with other outcome measures, it assesses abroader range of deficits and is better able to discriminate among subgroups of hemorrhagic stroke survivors. Key Words cerebral hemorrhage Ⅲ cerebrovascular disorders Ⅲ outcome assessment Ⅲ prognosis Ⅲ quality of life A mong patients with hemorrhagic stroke, the communitybased, 30-day case-fatality rate is 30% to 60%. 1-4 Approximately 70% of survivors, however, are independent in their activities of daily living at 1 year. 2,3 For this reason, some authors have concluded that hemorrhagic stroke patients who survive the first few weeks have a "good" prognosis. 1,3,5 A favorable outcome for hemorrhagic stroke patients, however, has been questioned, as many patients with good motor recovery exhibit marked cognitive disturbances and difficulties with emotional adjustment. 6 -9 Furthermore, while stroke scales, the Barthel Index, 10 and the modified Rankin Scale 11 continue to be the most commonly used stroke outcome measures, these traditional measures do not capture the full range of deficits experienced by stroke survivors. The evaluation of a broader range of patient outcomes (eg, cognitive, occupational) has been advocated. [12][13][14][15] Although the consensus classification system recently developed by the Classification of Stroke Outcome Task Force of the American Heart Association 16 is useful for assessing neurological impairments, disabilities, and handicaps of patients, a consensus instrument for assessing quality-of-life (QOL) outcomes for stroke patients is still lacking.The need for stroke-s...

Physician Advice, Patient Actions, and Health-Related Quality of Life in Secondary Prevention of Stroke Through Diet and Exercise

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“…In the last years, several specific HRQoL scales [24,25,26,27,28,29,30,31] have been developed (table 4). The Stroke Impact Scale (SIS) 3.0 version and the Stroke-Specific Quality of Life Scale (SS-QoL) are the most used and will be reviewed briefly.…”

Escalas utilizadas para la medición de la calidad de vida en pacientes con enfermedad cerebrovascular

“…Cerca del 70% de los sobrevivientes son independientes para sus actividades de la vida diaria en un año, por lo que algunos autores concluyen que quienes sobreviven después de unas semanas tienen buen pronóstico; sin embargo, hay cuestionamientos sobre los buenos desenlaces, ya que a pesar de mostrar una buena recuperación motora presentan marcadas alteraciones cognitivas y dificultades relacionadas a ajustes emocionales. Debido a que los pacientes jóve-nes se encuentran en el pico profesional y reproductivo, la calidad de vida es particularmente relevante [46][47][48][49] .…”

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