A survey of caregiver burden in those providing informal care for patients with schizophrenia or bipolar disorder with agitation: results from a European study

Abstract Background Agitation is a common feature of bipolar disorder and schizophrenia. Previous research indicates that specific symptoms impact caregiver burden in these conditions, but the impact of agitation on caregiver experience is poorly understood. The aim of this study was to characterise caregiver burden in providers of informal care for patients with bipolar disorder and schizophrenia who experience agitation. Methods In total, 297 matched patient and caregiver surveys were collected across the UK, Germany and Spain between October 2016 and January 2017. To be eligible, caregivers needed to provide informal care to a patient with a diagnosis of bipolar disorder or schizophrenia with agitation managed in a community setting and participating in the patient survey. The caregiver survey captured information on demographics and their role in managing the patient’s agitation. Caregiver burden was assessed using the Involvement Evaluation Questionnaire. Descriptive analysis was conducted. Results Caregivers provided 38.3 h (SD ± 40.34) a week of support to the patient with 20% providing 50 h or more. Most caregivers reported that they recognised an episode of agitation all of the time (44%, n = 130) or sometimes (40%, n = 119). Verbal de-escalation techniques (talking (80%, n = 239) and soothing (73%, n = 218) were the most commonly reported strategies used by caregivers during an episode of agitation; 14% (n = 43) reported resorting to physically restraining the patient. Caregivers supervised rescue medication administration regularly (41%, n = 69) or occasionally (49%, n = 82). Mean Involvement Evaluation Questionnaire score was 32.2 (± 15.27), equivalent to 28.4 (± 13.56) in Germany, 35.6 (± 16.55) in Spain and 33.3 (± 15.15) in the UK. Involvement Evaluation Questionnaire scores were higher for caregivers who reported hostile (41.7 ± 17.07) lack of control (40.3 ± 16.35) and violent (39.5 ± 16.40) patient behaviours when agitated. Over excitement (31.8 ± 15.05), restless (32.6 ± 14.77) and tense (32.9 ± 15.64) behaviours were associated with a lower Involvement Evaluation Questionnaire score. Conclusions Caregivers are active participants in the recognition and management of agitation episodes. The substantial burden reported by these caregivers is impacted by factors including the number of hours of care provided, patient behaviours and country. These may be viable targets for effective interventions to reduce caregiver burden

Physician Practice Patterns Associated with Diagnostic Evaluation of Patients with Suspected Mild Cognitive Impairment and Alzheimer’s Disease

The diagnostic process for patients presenting with cognitive decline and suspected dementia is complex. Physicians face challenges distinguishing between normal aging, mild cognitive impairment, Alzheimer’s disease, and other dementias. Although there is some evidence for improving attitudes towards the importance of prompt diagnosis, there is limited information describing how physicians approach this diagnostic challenge in practice. This was explored in the present study. Across-sectional survey of primary care and specialist physicians, in 5 European countries, Canada, and the United States, was conducted. Participants were asked about their use of cognitive screening tools and diagnostic technologies, as well as the rationales and barriers for use. In total, 1365 physicians participated in the survey, 63% of whom were specialists. Most physicians stated they use objective cognitive tools to aid the early detection of suspected mild cognitive impairment or Alzheimer’s disease in patients. The Mini-Mental State Examination was the most common tool used for initial screening; respondents cited speed and ease of use but noted its lack of specificity. Cerebrospinal fluid biomarker and amyloid positron emission tomography tests, respectively, had been used by only 26% and 32% of physicians in the preceding 6 months, although patterns of use varied across countries. The most commonly cited reasons for not ordering such tests were invasiveness (for cerebrospinal fluid biomarker testing) and cost (for amyloid positron emission tomography imaging). Data reported by physicians reveal differences in the approaches to the diagnostics process in Alzheimer’s. A higher proportion of primary care physicians in the United States are routinely incorporating cognitive assessment tools into annual visits, but this is due to country differences in clinical practice. The value of screening tools and regular use could be discussed further with physicians; however, lack of specificity associated with cognitive tools and the investment required from patients and the healthcare system are limiting factors

Characterizing the experience of agitation in patients with bipolar disorder and schizophrenia

Abstract Background Agitation is a common manifestation of bipolar disorder and schizophrenia which includes symptoms ranging from inner tension and unease to violence and aggression. Much of the existing literature has focused on agitation in the acute setting, with the patient experience poorly defined. Thus, the aim of this study was to characterize agitation and its management from a patient perspective, with the focus on those who reside in the community. Methods Surveys were completed across Germany, Spain and the UK by 583 community dwelling patients with schizophrenia or bipolar disorder who experienced episodes of agitation. Patients were recruited via either their physician or through patient support groups. The survey captured information on demographics, disease characteristics, frequency of agitation episodes and different pre-defined severity levels ranging from mild to severe, symptoms experienced during an episode, awareness of agitation and coping strategies employed by the patient. Statistics were descriptive in nature. Results The most commonly reported symptoms during an episode of agitation were feeling uneasy (n = 373, 64%), restless (n = 368, 63%) or nervous (n = 368, 63%). Patients experienced an average of 22.4 (SD 57.2) mild, 15.4 (SD 61.2) moderate, 6.8 (SD 63.3) moderate-intense and 2.9 (SD 24.4) severe episodes within the last 12 months; on average 2.7 (SD 6.8) required hospital attendance. Half of patients (n = 313) had attended hospital due to agitation. In total, 71% of patients (n = 412) were aware they were becoming agitated either always or sometimes and 61% of patients (n = 347) were aware of agitation triggers either always or sometimes. The majority of patients reported being able to sometimes control their agitation (56%, n = 329) but 16% (n = 94) stated that there is typically nothing they can do. To cope with episodes 55% (n = 125) of schizophrenia patients and 66% (n = 234) of bipolar disorder patients reported taking prescribed medication. Conclusion Community based patients with schizophrenia and bipolar disorder reported frequently experiencing agitation episodes which they defined most commonly as feeling uneasy, restless or nervous. A range of coping strategies were reported but they were not always successful, highlighting an area of unmet need in this population

Additional file 1: of Characterizing the experience of agitation in patients with bipolar disorder and schizophrenia

“Patient questionnaire v10.1 05.09.16”. Questionnaire administered to patients to characterize their experience of agitation, entitled “Self-completion Form for Patients”. (PPTX 147 kb

Burden of illness in not adequately controlled chronic hypoparathyroidism: Findings from a 13-country patient and caregiver survey

Objective To address knowledge gaps regarding burdens associated with not adequately controlled chronic hypoparathyroidism. Design Global patient and caregiver survey. Study Populations Patients with chronic hypoparathyroidism not adequately controlled on conventional therapy and their caregivers. Measurements Health‐related quality of life (HRQoL) and health status were evaluated using the 36‐item Short Form version 2 (SF‐36 v2.0) and Five‐Level EuroQoL 5 Dimensions (EQ‐5D‐5L) instruments, respectively. Hypoparathyroidism‐associated symptoms were assessed by a disease‐specific Hypoparathyroidism Symptom Diary and caregiver burden via the Modified Caregiver Strain Index (MCSI). Results Data were obtained from 398 patients and 207 caregivers. Patients' self‐rated hypoparathyroidism‐related symptom severity was none (3%), mild (32%), moderate (53%) or severe (12%). Per the Hypoparathyroidism Symptom Diary, patients reported moderate, severe or very severe symptoms of physical fatigue (73%), muscle cramps (55%), heaviness in limbs (55%) and tingling (51%) over a 7‐day recall period. Impacts (rated ‘somewhat’ or ‘very much’) were reported by 84% of patients for ability to exercise, 78% for sleep, 75% for ability to work and 63% for family relationships. Inverse relationships were observed between patient self‐rated overall symptom severity and HRQoL and health status assessment scores—the greater the symptom severity, the lower the SF‐36 and EQ‐5D‐5L scores. Caregiver burden increased with patient self‐rated symptom severity: none, 1.7 MCSI; mild, 5.4 MCSI; moderate, 9.5 MCSI; and severe, 12.5 MCSI. Conclusion Patients with not adequately controlled hypoparathyroidism reported substantial symptoms and impacts. Greater patient symptom severity was associated with decreased patient HRQoL and health status assessments and increased caregiver burden