Agreement between dementia patient report and proxy reports using the Nottingham Health Profile

OBJECTIVE: The aim of the study was to examine the agreement between patient reports and their proxy reports (family and care provider proxies) on Health Status in a sample of patients with dementia. METHOD: Ninety-nine patients with mild to moderate dementia and proxies completed the 38-item Nottingham Health Profile (NHP) questionnaire. RESULTS: Completion rates for the different NHP dimensions ranged from 78 to 90% for the dementia subjects. Inter-rater agreement between different proxies and subject was from moderate to good for physical assessment (ICCs from 0.54 to 0.78 for physical mobility scales). Patient/family proxy concordance was moderate to good for five out of six dimensions (physical mobility, social isolation, pain, energy, sleep) and poor for emotional reaction. Family proxies systematically reported lower functioning than did patients in the four subscales assessing: physical mobility (p <0.0001), energy (p <0.005), social isolation (p <0.01) and sleep (p <0.03). Care provider proxies only estimated physical mobility as lower (p <0.0001). CONCLUSION: Age and physical status of the patient significantly affected agreement in patient-care provider proxy ratings. Thus, caution is appropriate when resorting to proxies to estimate the Health Status of a dementia patient.     

Insomnia and health-related quality of life in stroke

Abstract

Background:

Insomnia is a common complaint in stroke survivors. Insomnia after stroke is correlated with physical disability, dementia, anxiety, depression, and fatigue. However, the influence of insomnia following stroke on health-related quality of life (HRQoL) has not been investigated.

Objectives:

The current study aimed to examine the effect of insomnia on HRQoL in stroke survivors 3 months after their index stroke over and above confounding variables.

Method:

Three hundred and thirty-six patients were recruited from the acute stroke unit in a regional hospital in Hong Kong. Insomnia was ascertained by a single item on a locally validated, seven-item insomnia questionnaire. HRQoL was measured by the total score and the 12 domain scores of the Stroke Specific Quality of Life (SSQoL) scale. Demographic and clinical characteristics were obtained using the following scales: National Institutes of Health Stroke Scale (NIHSS), Barthel Index (BI), Mini-Mental State Examination (MMSE), and Geriatric Depression Scale (GDS).

Results:

Forty-four percent of stroke survivors reported experiencing insomnia in the past month; they were more likely to be female and to have a higher GDS score. The insomnia group had significantly lower overall SSQoL, energy and thinking scores after adjusting for sex, BI, and GDS scores.

Conclusion:

The findings show that stroke survivors who experienced insomnia had a reduced overall HRQoL and were impaired in the energy and thinking domains of HRQoL. Early screening for sleep disturbance would be beneficial to prevent later development of post-stroke insomnia. Pharmacological and non-pharmacological interventions are suggested to improve HRQoL in stroke patients with insomnia.     

The impact of pain on health-related quality of life 3 months after stroke

Abstract

Background:

Pain is common in stroke; however, its impacts on health-related quality of life (HRQoL) are unclear due to the limitations of previous studies.

Objectives:

The current study aims to examine and compare the demographic and clinical characteristics of Chinese stroke patients with and without pain and explore the correlations between poststroke pain and HRQoL.

Method:

Four hundreds and forty-one participants recruited in an acute stroke unit in a regional hospital. They were assessed 3 months after the index stroke with the following instruments. HRQoL was measured using the Short Form-12 (SF-12). The Chinese version of the Faces Pain Rating Scale-Revised (FPS-R) was used to determine the presence and intensity of pain. The demographic and clinical characteristics of patients were obtained using Barthel Index (BI), Fatigue Severity Scale (FSS), Geriatric Depression Scale (GDS), Anxiety subscale of the Hospital Anxiety and Depression Scale (HADSA), Instrumental Activities of Daily Living (IADL), Mini Mental State Examination (MMSE), Modified Rankin Scale (MRS), and National Institutes of Health Stroke Scale (NIHSS).

Results:

Of all participants screened, 167 reported pain and 69 had novel pain. The pain group had significantly lower physical component summary (PCS) scores after adjusting for sex, education, DSM-IV depression and BI, GDS, HADSA, and FSS scores. The FPS score was negatively correlated with a lower PCS score in patients with pain and with novel pain.

Conclusion:

The presence and intensity of pain have significant negative effects on HRQoL in stroke survivors. Interventions for pain could make a valuable contribution to improving HRQoL in stroke survivors.     

Spasticity and its association with functioning and health-related quality of life 18 months after stroke

BACKGROUND: There is no consensus concerning the presence of spasticity or the relationship between spasticity and functioning and spasticity and health-related quality of life (HRQL) in the stable phase after stroke. OBJECTIVE: The aim of the present study was to describe, 18 months after stroke, the frequency of spasticity and its association with functioning and HRQL. METHODS: In a cohort of 66 consecutive patients with first-ever stroke, studied prospectively, the following parameters were assessed 18 months after stroke: spasticity, by the Modified Ashworth Scale (0-4 points with 1+ as the modification), muscle stiffness, by self-report, abnormal tendon reflexes, by physical examination, motor performance, by the Lindmark Motor Assessment Scale, mobility, by the Rivermead Mobility Index, activities of daily living, by the Barthel Index, and HRQL, by the Swedish Short Form 36 Health Survey Questionnaire (SF-36). RESULTS: Of 66 patients studied, 38 were hemiparetic; of these, 13 displayed spasticity, 12 had increased tendon reflexes, and 7 reported muscle stiffness 18 months after stroke. Weak (r < 0.5) to moderate (r = 0.5-0.75) correlations were seen between spasticity and functioning scores. Correlations between spasticity and HRQL were generally weak (r < 0.5). Hemiparetic patients without spasticity had significantly better functioning scores and significantly better HRQL on 1 of the 8 SF-36 health scales (physical functioning) than patients with spasticity. CONCLUSIONS: Few patients displayed spasticity 18 months after stroke. Spasticity might contribute to impairment of movement function and to limitation of activity, but seems to have a less pronounced effect on HRQL.     

Health-related quality of life evaluation by proxy in Parkinson's disease: approach using PDQ-8 and EuroQoL-5D.

Patient- and caregiver-based scores were compared and agreement levels ascertained to determine the reliability of proxy evaluation of Parkinson's Disease (PD) patients' health-related quality of life (HRQoL) using the EuroQoL and PD questionnaire (PDQ)-8. Of 72 patient-caregiver pairs, 64 (88.88%) returned the questionnaires. The degree of agreement varied for individual dimensions. Proxy evaluation of PD patients' HRQoL showed limitations mainly with assessments using the EuroQoL and especially in patients with severe disease and depression.     

Disablement and quality of life after stroke

This study concerns the quality of life of patients after stroke and how this is influenced by disablement and emotional factors. Ninety-six consecutive patients of mean age 71 years were followed for two years. At the end of that time 23% had experienced a recurrence of stroke and 27% were deceased. Of the survivors 76% were independent as regards activities of daily life (ADL) and lived in their own homes. Age as well as initial function were prognostically important factors. Patients who could participate in interviews marked on a visual analogue scale their evaluation of quality of life before and after stroke. Most of them had experienced a decrease and no improvement was observed during the two years. The deterioration was more pronounced in ADL dependent patients than among the independent. However, depression and anxiety were found to be of similar importance for quality of life as was physical disablement. These findings call for a greater emphasis on psychological support in the care of post stroke patients. The visual analogue scale can be a useful tool for detecting special needs.     

Comparison of older adult subject and proxy responses on the SF-36 health-related quality of life instrument

Studies of older adults' health status and health-related quality of life (HRQoL) often rely on proxy responses when subjects have problems that affect their ability to respond. With the increased interest in outcomes research in health care, it is important to examine proxy reliability on HRQoL instruments. This study compares 32 pairs of subject-andproxy responses on the eight subscales and two summary scales of the Short Form 36 (SF-36). Subjects and their proxies, recruited from senior centers and residential facilities, were interviewed face-to-face within a seven-day period. Subjects were 60 years of age or older and had passed a brief cognitive screen, and proxies were geographically proximate and had seen the subject during the past week. Results showed that although moderate intra-class correlations were found on six of the eight measures, an item-level kappa statistic indicated poor to fair agreement on all subscales except items of Physical Functioning and Role Physical. Moreover, paired t-tests revealed proxy mean scores that were significantly lower on the Physical Functioning, Vitality, and Mental Health subscales. Given the mixed findings, until further research is done, researchers and clinicians should exercise caution when using proxy responses for older adults with the SF-36.     

Long-term health-related quality of life after decompressive hemicraniectomy in stroke patients with life-threatening space-occupying brain edema

Background

Although randomized clinical trials have reported significant improvement in mortality and functional outcome as measured with modified Rankin Scale (mRS) or Barthel index (BI) in stroke patients with space-occupying anterior circulation infarctions treated with hemicraniectomy, many clinicians are still concerned about the long-term health-related quality of life (HRQoL).

Aim

Assessment of HRQoL after hemicraniectomy to holistically reevaluate clinical outcome.

Methods

Eleven patients (6 men, 5 women; mean age 48 (SD 5.8) years) were examined at 9–51 months after hemicraniectomy. Test batteries comprised NIH stroke scale, BI, mRS, neuropsychological tests (Visual Object and Space Perception Battery and clock test), and HRQoL-scales (Short Form 36 Health Survey (SF-36), Nottingham Health Profile (NHP), Questions on Life Satisfaction, Hospital Anxiety and Depression Scale and EQ-5D).

Results

Median values for NIHSS, BI and mRS were 11.5, 55 and 3.5. In HRQoL-scales, subscales related to physical mobility and functioning were consistently severely impaired, while subscales related to psychological well-being were impaired to a lesser extent. Mean scores for physical functioning and physical role were 10.5 and 12.5 in the SF-36, and 61.3 and 43.3 for physical mobility and energy in the NHP; emotional role and mental health scored 63.3 and 66.4 (SF-36), scores for emotional reaction and social isolation were 18.9 and 16.0 (NHP), respectively.

Conclusion

Although, physical components of HRQoL are highly impaired, these stroke patients achieved a satisfying level of psychological well-being which was endorsed by a nearly unanimous retrospective appraisal of life-saving hemicraniectomy.     

Putting the ‘Q’ in depression QALYs: a comparison of utility measurement using EQ-5D and SF-6D health related quality of life measures

Background  

Generic health preference measures that capture quality of life improvements in depression are important for economic analysis of new technologies.     

Mediation of the relationship between inner voice experiences and health-related quality of life

PROBLEM: Appraisals tied to voice hearing and other subjective experiences pose serious challenges for nursing because of their implications for health and safety of voice hearers and others. METHOD: An exploratory, correlational design involving hierarchical analysis of data from 337 voice hearers. FINDINGS: Inner voice experiences and subjective-deficit symptoms each had significant negative, independent effects on perceptions of the integrity of the functional nervous system, self-esteem, and health-related quality of life. The combination of subjective-deficit symptoms, perceptions of the integrity of the functional nervous system and self-esteem significantly reduced the negative impact of inner voice experiences on health related quality of life (R2 = .511). Perceived integrity of the functional nervous system and self-esteem together almost completely attenuated the impact of voice hearing on subjects' health-related quality of life. CONCLUSION: These results highlight the need to develop strategies that can help voice hearers respond to inner experiences in a more positive manner.     

Consistent determinants of health-related quality of life in the first 12 months after stroke: a prospective study in Nigeria

Abstract

Background:

Health-related quality of life (HRQoL) of stroke survivors can be described as an important and holistic index of stroke outcome. To enhance this all encompassing construct, information on its predictors at different phases of stroke is required.

Objective:

This study sought to identify consistent determinants of HRQoL over the course of 1 year after stroke in Nigeria.

Methods:

Information on socio-demographic, clinical, and functioning attributes of 55 consecutive individuals with first-ever stroke were obtained during acute admission and at 1, 3, 6, and 12 months post-stroke. Attributes of functioning namely, motor performance, functional activity, and participation were assessed using the Simplified Fugl–Meyer Assessment, the motor-Functional Independence Measure, and the London Handicap Scale, respectively. HRQoL was also assessed with the Health-Related Quality of Life in Stroke Patients-40 scale at 1, 3, 6, and 12 months. Attributes that were associated with HRQoL at these time points were identified using bivariate and multivariable regression analyses.

Results:

Among the independent variables, concurrently assessed participation was the sole significant (P?<?0.0001) determinant of HRQoL at 1, 3, and 6 months, respectively accounting for 70%, 64%, and 75% variance in HRQoL. At 12 months, participation (P?<?0.0001), and functional activity (P?<?0.05) accounted for 83% variance in HRQoL, with better functional activity and participation associated with better HRQoL.

Conclusion:

The outcome of this study indicates that optimizing post-stroke functional activity and participation through proven and effective rehabilitation strategies may result in better HRQoL in stroke survivors.