scholarly journals 410 - Dementia-related Psychosis Symptoms and Impact from the Patient and Care Partner (Caregiver) Perspective: an Observational, Prospective Study to Describe the Patient Experience

2020 ◽  
Vol 32 (S1) ◽  
pp. 126-126
Author(s):  
Teresa Brandt ◽  
Theresa Frangiosa ◽  
Virginia Biggar ◽  
Angela Taylor ◽  
Bill Keller ◽  
...  
Keyword(s):  
Prospective Study ◽  
Patient Experience ◽  
Online Survey ◽  
Qualitative Interviews ◽  
Lewy Body Dementia ◽  
Auditory Hallucinations ◽  
Psychotic Symptoms ◽  
Visual Hallucinations ◽  
Substantial Impact ◽  
The Impact

Background:This study aimed to describe the person-centered experience of symptoms and impact of dementia-related psychosis (DRP) from a patient and care partner (CP) perspective.Methods:This observational, non-interventional, prospective study collected patient experience data to understand the impact of DRP in persons with various dementia subtypes. Qualitative interviews were conducted with persons or their CP who have a clinical diagnosis of all-cause dementia with psychotic symptoms, recruited through physician referrals. The quantitative online survey was completed by persons with self-reported DRP or their CP recruited by advocacy groups: UsAgainstAlzheimer’s and the Lewy Body Dementia Association. CP burden was beyond the scope of this study.Results:Sixteen individuals (1 patient, 15 CP) participated in the qualitative interview. The most commonly reported symptoms of DRP were visual hallucinations (88%), auditory hallucinations (69%), and persecutory delusions (56%). Participants described an impact of DRP on activities of daily living (75%), sleep (63%), family life (56%), and safety concerns (56%).The quantitative portion was completed by 212 participants (26 patients, 186 CP). DRP symptoms most frequently reported by patients were visual hallucinations (89%), auditory hallucinations (54%), and distortion of senses (54%); those reported by CP were paranoid delusions (76%), visual hallucinations (75%), and lack of trust for loved ones (52%). For patients with recent visual hallucinations, 61% of patients and 70% of CP reported experiencing this symptom on a weekly basis. When asked to rank the impact on the patient’s life, patients reported that visual hallucinations were the most impactful symptom whereas CP reported paranoid delusions/false beliefs as most impactful, followed by visual hallucinations. Difficulty differentiating what is real from what is not real, increased anxiety, and effects on personal relationships were the most common types of impacts reported by both patients and CP. Most patients (>40%) were not receiving medications for DRP.Conclusions:Persons with DRP experience hallucinations and delusions that have a substantial impact on their lives. Here, patient experience data demonstrate that there is a need for treatments to reduce the symptoms and impacts of DRP.Study Sponsored By: ACADIA Pharmaceuticals Inc.DisclosuresTF is a consultant with Frangiosa & Associates, LLC.VB and AT have no relevant financial relationships to disclose.TB, BK, and VA are employees of and may hold stock and/or stock options with ACADIA Pharmaceuticals Inc.

scholarly journals 434 - Treatment Patterns and Needs for Dementia-related Psychosis Described by Patients and Care Partners (Caregivers): an Observational, Prospective Study to Describe the Patient Experience

2020 ◽  
Vol 32 (S1) ◽  
pp. 151-151
Author(s):  
Teresa Brandt ◽  
Theresa Frangiosa ◽  
Virginia Biggar ◽  
Angela Taylor ◽  
Bill Keller ◽  
...  
Keyword(s):  
Standard Deviation ◽  
Prospective Study ◽  
Online Survey ◽  
Atypical Antipsychotics ◽  
Qualitative Interviews ◽  
Unmet Need ◽  
Current Treatment ◽  
Treatment Patterns ◽  
Symptom Improvement ◽  
Vas Score

AbstractBackground:We aimed to describe current treatment patterns and unmet needs of persons with DRP from a patient and care partner (CP) perspective.Methods:This observational, non-interventional, prospective study used a mixed-methods approach with qualitative interviews and a quantitative online survey. Persons with DRP and CP of persons with DRP reported the effectiveness of current treatments using a visual analog scale (VAS) of 0 (“not at all well”) to 5 (“extremely well”) and ranked benefits of an ideal treatment. CP burden was outside the scope of this study.Results:The qualitative interview was completed by 1 patient and 15 CP. Current treatments included atypical antipsychotics, antidepressants, anxiolytics, and benzodiazepines. Participants commonly indicated a need to improve patients’ ability to know what is real vs not real.The online survey was completed by 26 patients and 186 CP on behalf of patients under their care. Common treatments used included atypical antipsychotics (27% of patients, 41% of CP) and psychological/ behavioral therapy (23% of patients, 8% of CP). Many participants reported no current treatment (42% of patients, 42% of CP). Participants reported that current treatment methods were less than moderately helpful in treating patients’ most impactful symptoms with a median VAS score of 2.0/5 reported by patients and CP (mean VAS score [standard deviation] = 2.33 [1.0] for patients [n=15], mean [standard deviation] VAS score = 2.4 [1.3] for CP [n=104]). Discontinuation of a treatment was reported by 11 patients and 115 CP, most commonly due to a side effect (27% of patients, 31% of CP), doctor’s recommendation (27% of patients, 14% of CP), or lack of symptom improvement (9% of patients, 28% of CP). Participants ranked the ability to distinguish what is real vs not real (35% of patients, 49% of CP) and overall symptom improvement (42% of patients, 23% of CP) as the most important benefits of an ideal treatment.Conclusions:Patients and CPs reported either not taking any DRP treatments or that current treatments were associated with side effects along with limited efficacy. There is an unmet need for safe and effective treatments for DRP.Study Sponsored By:ACADIA Pharmaceuticals Inc.DisclosuresTF is a consultant with Frangiosa & Associates, LLC.VB and AT have no relevant financial relationships to disclose.TB, BK, and VA are employees of and may hold stock and/or stock options with ACADIA Pharmaceuticals Inc.

scholarly journals Use of Artificial Intelligence to understand adults’ thoughts and behaviours relating to COVID-19

2021 ◽  
pp. 175791392097933
Author(s):  
SW Flint ◽  
A Piotrkowicz ◽  
K Watts
Keyword(s):  
Artificial Intelligence ◽  
Online Survey ◽  
Severe Illness ◽  
Free Text ◽  
Community Recovery ◽  
Substantial Impact ◽  
Lifestyle Behaviours ◽  
Artificial Intelligence Methods ◽  
High Concern ◽  
The Impact

Aims: The outbreak of severe acute respiratory syndrome coronavirus 2 (COVID-19) is a global pandemic that has had substantial impact across societies. An attempt to reduce infection and spread of the disease, for most nations, has led to a lockdown period, where people’s movement has been restricted resulting in a consequential impact on employment, lifestyle behaviours and wellbeing. As such, this study aimed to explore adults’ thoughts and behaviours in response to the outbreak and resulting lockdown measures. Methods: Using an online survey, 1126 adults responded to invitations to participate in the study. Participants, all aged 18 years or older, were recruited using social media, email distribution lists, website advertisement and word of mouth. Sentiment and personality features extracted from free-text responses using Artificial Intelligence methods were used to cluster participants. Results: Findings demonstrated that there was varied knowledge of the symptoms of COVID-19 and high concern about infection, severe illness and death, spread to others, the impact on the health service and on the economy. Higher concerns about infection, illness and death were reported by people identified at high risk of severe illness from COVID-19. Behavioural clusters, identified using Artificial Intelligence methods, differed significantly in sentiment and personality traits, as well as concerns about COVID-19, actions, lifestyle behaviours and wellbeing during the COVID-19 lockdown. Conclusions: This time-sensitive study provides important insights into adults’ perceptions and behaviours in response to the COVID-19 pandemic and associated lockdown. The use of Artificial Intelligence has identified that there are two behavioural clusters that can predict people’s responses during the COVID-19 pandemic, which goes beyond simple demographic groupings. Considering these insights may improve the effectiveness of communication, actions to reduce the direct and indirect impact of the COVID-19 pandemic and to support community recovery.

scholarly journals Health professionals' lack of knowledge of central venous access devices: the impact on patients

2019 ◽  
Vol 28 (14) ◽  
pp. S4-S14
Author(s):  
Linda J Kelly ◽  
Austyn Snowden ◽  
Ruth Paterson ◽  
Karen Campbell
Keyword(s):  
Patient Experience ◽  
Online Survey ◽  
Central Venous Access ◽  
Venous Access ◽  
Central Venous ◽  
Doctoral Study ◽  
Study Objective ◽  
Disease Experience ◽  
Venous Access Device ◽  
The Impact

Background: the literature on the patient experience of living with a central venous access device (CVAD) is growing, but remains sparse. It suggests that patients accept having a CVAD as it should reduce episodes of repeated cannulations. However, a recent doctoral study found the reality did not live up to this hope. Aim: the study objective was to uncover the global, cross-disease experience of patients with CVADs. Method: an online survey was sent to an international sample of people living with CVADs. Findings: 74 people from eight countries responded. Respondents corroborated the PhD findings: painful cannulation attempts continued after CVAD insertion because of a lack of clinical knowledge. Participants lost trust in clinicians and feared complications due to poor practice. Conclusion: clinicians often lack the necessary skills to care and maintain CVADs. This leads to a negative patient experience.

scholarly journals 148 Visual Snow Defeats Guardians of the Galaxy Volume 2: Unremitting Pixelation Despite Three-Dimentional Stereoscopic Film

CNS Spectrums ◽  
2018 ◽  
Vol 23 (1) ◽  
pp. 91-92
Author(s):  
Kanchan S Prashar ◽  
Abraham M Titus ◽  
Vishal Kinkhabwala ◽  
Alan R Hirsch
Keyword(s):  
Liver Function Tests ◽  
Head Movements ◽  
Auditory Hallucinations ◽  
Thyroid Function Tests ◽  
Visual Hallucinations ◽  
Single Male ◽  
Function Tests ◽  
Cortical Hyperexcitability ◽  
Retinal Examination ◽  
The Impact

AbstractIntroductionPixelated vision or visual snow has been associated with schizophrenia (Silverstein 2011). The impact of viewing a 3D motion picture on such a visualphenomenon has not heretofore been described.MethodCase Study: A 28 year old right handed single male three years prior to presentation noticed that all his vision was pixelated. The pixelated vision is panoramic, involving the entire visual field. The pixels are characterized by 10,000 flat white and gray dots measuring 1mm x 1mm. No changes in color, shape, or size were noted in high and low intensity light. White, dark, gray, or multicolored backgrounds had no effect on his vision. The visual distortions are not impacted by head movements, emotions, degree of tiredness, driving, or his hedonic perception of the object being visualized. The pixels were noted to disappear upon closure of both eyes but persisted during monocular vision with either eye. These visual hallucinations were sporadic during the first year and became continuous over the following two years. Two weeks after onset ofpixelated vision he developed auditory hallucinations and hyperacusis. These increased in intensity and frequency to 500-600 times per day. He denied palinopsia, migraines, tinnitus, and photophobia. These hallucinations persisted despite treatment with aripiprazole, paliperidone, lurasidone, olanzapine, clozapine, ziprasidone, benztropine, bupropion, lamotrigine, modafinil, trazodone, atomoxetine, and amphetamine.ResultsAbnormalities in Examination: Hypoverbal, blunted affect, impaired concentration, preoccupied with racing thoughts. Admitted to actively having auditory and visualhallucinations, without suicidal or homicidal ideations. Memory testing: Able to recall 2 out of 4 objects in 3 minutes and 3 out of 4 with reinforcement. Similarities interpreted concretely. Visual Acuity: 20/20 OU. Retinal examination: Normal. Intraocular Pressure: 19 mm OD, 20 mm OS (normal). Automotive Perimetry Testing: Normal. Cover/Uncover: Normal. Near Convergence: 3 inches (normal). Lens or filtered prism have no effect on visual snow. MRI of his brain, EEG, BAER, liver function tests, CBC, vitamin B12, folate, and thyroid function tests were normal. MRA: mild hypoplasia of distal right vertebral artery.DiscussionVisual snow has been anecdotally described as static, continuous, and independent of the specific visual environment (McKendrick, 2017). However, thepersistence of visual snow in the presence of 3D movies has never been reported. The visual snow paralleled auditory hallucinations and hyperacusis in frequency and intensity, which suggests there may be generalized hyperexcitability of the brain inducing both auditory and visual hallucinations. Agents that reduce cortical hyperexcitability (i.e., anticonvulsants, anxiolytics) may have efficacy. Treatment with these agents has been described (Ghannam, 2017), warrants further investigation.Funding AcknowledgementsNo funding.

15 The neurological patient experience survey (England)

2020 ◽  
Vol 91 (8) ◽  
pp. e13.2-e14
Author(s):  
Michael Dilley ◽  
Katharine McIntosh ◽  
Sarah Vibert ◽  
Keyword(s):  
Mental Health ◽  
Patient Experience ◽  
Service Provision ◽  
Online Survey ◽  
Mental Wellbeing ◽  
Process Data ◽  
Neurological Patient ◽  
Mental Health Support ◽  
Experience Survey ◽  
The Impact

Objectives/aimsThe Neurological Alliance’s patient experience survey 2018/19 aimed to gather relevant data of the experiences of 10,000 neurology patients across England, in order to reveal how patients are faring, and to provide insight about the impact service provision (or lack thereof) is having in people’s lives. It is the only pan- neurological national survey of neurology patients. Mental wellbeing questions were included to build our understanding of service provision and whether people’s needs are being met.MethodsAn online and in-clinic survey was conducted during the course of 2018–2019. The online survey was promoted by The Neurological Alliance’s member organisations (predominantly charities), and via social media. The in-clinic data was collected from patients attending neurology outpatient appointments at 39 clinics across England. The data underwent a rigorous cleaning process. Data regarding patient’s home postcodes was collected in order to be able to attribute responses to STPs. Results were subsequently anonymised prior to analysis.ResultsOf those to whom these questions were relevant:40% of respondents (n=2879) felt their mental wellbeing needs were not being met at all, and an additional 22% (n=1613) said their needs were only being met to a small extent 30% (n=2821) had not been referred or signposted to support for their mental wellbeing by a health professional, but would have liked this 58% (n=5593) said they were not asked about their mental wellbeing by a health or social care professional.Of those referred/signposted for mental health support, 26% (n=616) were referred to a neuropsychologist/neuropsychiatrist, 60% (n=1452) to a counsellor/therapist, 7% (n=167) to a buddying/befriending support group 62% (n=1249) said this support helped them feel better/more positive; 24% (n=481) said that this support did not make them feel better/more positive; 14% (n=270) said it was not suitable for them.The older respondents were, the less likely they were to have been signposted to support for managing their mental health: 18–24s scored 36%, 55–64s scored 26%, 65–74s scored 17%, and 75+ scored 12%. People aged 75+ were most likely (67%) to report they did not need/want signposting.ConclusionsThe data gathered enhances our understanding of the mental wellbeing of people with neurological conditions, and provides a baseline for monitoring improvement/future interventions, such as the forthcoming neuropsychiatry service specification.

scholarly journals Impact of involving people with dementia and their care partners in research: a qualitative study

BMJ Open ◽  
2020 ◽  
Vol 10 (10) ◽  
pp. e039321
Author(s):  
Jahanara Miah ◽  
Suzanne Parsons ◽  
Karina Lovell ◽  
Bella Starling ◽  
Iracema Leroi ◽  
...  
Keyword(s):  
Public Involvement ◽  
Qualitative Interviews ◽  
Research Programme ◽  
Patient And Public Involvement ◽  
Substantial Impact ◽  
People With Dementia ◽  
Care Partners ◽  
Dementia Research ◽  
Research User ◽  
The Impact

ObjectivesWe aimed to evaluate the impact of patient and public involvement (PPI) at each stage of the research cycle in a dementia research programme.DesignWe used monitoring forms to record the impact of the research programme’s PPI at different stages of research and qualitative interviews with all participants to evaluate the impact of PPI.SettingWe evaluated Research User Groups (RUGs—older people with dementia and care partners) which were established to provide PPI support for the research programme in multiple European sites.ParticipantsWe purposively sampled RUG members (n=34) and researchers (n=13) who had participated in PPI activities. Inclusion criteria for the study were: (a) RUG members who had participated in the research awareness training and in PPI activities and had the capacity to consent; (b) researchers who involved RUGs in their work.ResultsImpact on the research: changes to the study conduct were made as a result of the feedback from RUGs. These included prioritisation of clinical recommendations, the wording of study information and recruitment materials, the content and layout of the user interface for a computerised memory test, interpretation of intervention results and advice on dissemination avenues. Impact on RUG members: they reported that involvement had given them a sense of purpose and satisfaction. Their perception of health research changed from being an exclusive activity to one, which lay people, could have meaningful involvement. Impact on researchers: PPI was a new way of working and interacting with PPI members had given them insight into the impact of their work on people living with dementia.ConclusionsPPI can have a substantial impact on dementia research and the people involved in the research. To justify the time and expense of PPI, the advantageous practical impacts of PPI should be systematically recorded and consistently reported.

scholarly journals How does uncertainty shape patient experience in advanced illness? A secondary analysis of qualitative data

2016 ◽  
Vol 31 (2) ◽  
pp. 171-180 ◽  
Author(s):  
Simon Noah Etkind ◽  
Katherine Bristowe ◽  
Katharine Bailey ◽  
Lucy Ellen Selman ◽  
Fliss EM Murtagh
Keyword(s):  
Patient Experience ◽  
Information Needs ◽  
Qualitative Interviews ◽  
Secondary Analysis ◽  
Uncertainty Assessment ◽  
Chronic Obstructive ◽  
Advanced Illness ◽  
Obstructive Pulmonary Disease ◽  
Starting Point ◽  
The Impact

Background: Uncertainty is common in advanced illness but is infrequently studied in this context. If poorly addressed, uncertainty can lead to adverse patient outcomes. Aim: We aimed to understand patient experiences of uncertainty in advanced illness and develop a typology of patients’ responses and preferences to inform practice. Design: Secondary analysis of qualitative interview transcripts. Studies were assessed for inclusion and interviews were sampled using maximum-variation sampling. Analysis used a thematic approach with 10% of coding cross-checked to enhance reliability. Setting/participants: Qualitative interviews from six studies including patients with heart failure, chronic obstructive pulmonary disease, renal disease, cancer and liver failure. Results: A total of 30 transcripts were analysed. Median age was 75 (range, 43–95), 12 patients were women. The impact of uncertainty was frequently discussed: the main related themes were engagement with illness, information needs, patient priorities and the period of time that patients mainly focused their attention on (temporal focus). A typology of patient responses to uncertainty was developed from these themes. Conclusion: Uncertainty influences patient experience in advanced illness through affecting patients’ information needs, preferences and future priorities for care. Our typology aids understanding of how patients with advanced illness respond to uncertainty. Assessment of these three factors may be a useful starting point to guide clinical assessment and shared decision making.

Confusion between symptom and disease. Parkinson vs meningioma

2017 ◽  
Vol 41 (S1) ◽  
pp. s493-s493
Author(s):  
M.J. Gordillo Montaño ◽  
S. Ramos Perdigues ◽  
C. Merino del Villar ◽  
C. Caballero Roy ◽  
S. Latorre ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Differential Diagnosis ◽  
Dopaminergic Neurons ◽  
Poor Response ◽  
Auditory Hallucinations ◽  
Psychotic Symptoms ◽  
Visual Hallucinations ◽  
Dopaminergic Drugs ◽  
Competing Interest

IntroductionParkinson's disease is caused by decreased dopaminergic neurons of the substantia nigra. Psychosis occurs between 20 and 40% of patients with Parkinson's disease. Dopaminergic drugs act as aggravating or precipitating factor. Before the introduction of levodopa patients had described visual hallucinations but the frequency was below 5%.ObjectiveIllustrated importance of treatment, reassessment after its introduction and refractoriness to answer; as well as the importance of a differential diagnosis at the onset of psychotic symptoms later in life.MethodClinical case: female patient 75 years tracking Neurology by parkinsonism in relation to possible early Parkinson disease. She was prescribed rasagiline treatment. Begins to present visual and auditory hallucinations, delusional self-referential and injury. She had no previous psychiatric history. She went on several occasions to the emergency room, where the anti-Parkinson treatment is decreased to the withdrawal point and scheduled antipsychotics did not answer. Doses of antipsychotics are increased despite which symptoms persist and even increase psychotic symptoms. In this situation it is agreed to extend the study. Subsequently an NMR of the skull where the image is suggestive of a right occipital meningioma appears.Results/conclusionsWith the emergence of psychotic symptoms later in life it will be important to ask a broad differential diagnosis, since in a large number of cases will be secondary to somatic or to drug therapies.Parkinsonism can be a symptom of occipital meningioma, presenting in the psychotic clinic. Refractoriness, on one hand to the suspension of treatment for Parkinson's disease, such as poor response to antipsychotics, did extend the study, which ultimately gave us the diagnosis.Disclosure of interestThe authors have not supplied their declaration of competing interest.

Contact precautions for colonisation with multidrug-resistant organisms and haemodialysis patient quality of life and mood: a pilot case-control study

2019 ◽  
pp. 19-25 ◽  
Author(s):  
Rathika Krishnasamy
Keyword(s):  
Quality Of Life ◽  
Qualitative Interviews ◽  
Social Function ◽  
Multidrug Resistant ◽  
Contact Precautions ◽  
Dialysis Vintage ◽  
Multidrug Resistant Organisms ◽  
And Gender ◽  
The Impact

Background: The rate of multidrug-resistant organisms (MDRO) colonisation in dialysis populations has increased over time. This study aimed to assess the effect of contact precautions and isolation on quality of life and mood for haemodialysis (HD) patients colonised with MDRO. Methods: Patients undergoing facility HD completed the Kidney Disease Quality of Life (KDQOL–SFTM), Beck Depression Inventory (BDI) and Personal Wellbeing-Index Adult (PWI-A). Patients colonised with MDRO were case-matched by age and gender with patients not colonised. Results: A total of 16 MDRO-colonised patients were matched with 16 controls. Groups were well matched for demographics and co-morbidities, other than a trend for older dialysis vintage in the MDRO group [7.2 years (interquartile range 4.6–10.0) compared to 3.2 (1.4–7.6) years, p=0.05]. Comparing MDRO-positive with negative patients, physical (30.5±10.7 vs. 34.6±7.3; p=0.2) and mental (46.5±11.2 vs. 48.5±12.5; p = 0.6) composite scores were not different between groups. The MDRO group reported poorer sleep quality (p=0.01) and sleep patterns (p=0.05), and lower social function (p=0.02). BDI scores were similar (MDRO-positive 10(3.5–21.0) vs. MDRO-negative 12(6.5–16.0), p=0.6). PWI-A scores were also similar in both groups; however, MDRO patients reported lower scores for “feeling safe”, p=0.03. Conclusion: While overall scores of quality of life and depression were similar between groups, the MDRO group reported poorer outcomes in sleep and social function. A larger cohort and qualitative interviews may give more detail of the impact of contact precautions and isolation on HD patients. The necessity for contact precautions for different MDRO needs consideration.

Effects of Quarantine Due to the COVID-19 on Sleep Duration and Quality in Algerians

2020 ◽  
Vol 60 (2) ◽  
pp. 182-193
Author(s):  
Kacem Abdelhadi ◽  
Houar Abdelatif ◽  
Zerf Mohamed ◽  
Bengoua Ali
Keyword(s):  
Statistical Analysis ◽  
Sleep Quality ◽  
Sleep Duration ◽  
Online Survey ◽  
Public Awareness ◽  
Italian Version ◽  
Sleep Timing ◽  
Algerian Population ◽  
Significant Change ◽  
The Impact

SummaryThis study tests the impact of COVID-19 on sleep of Algerian population before and during the COVID-19 quarantine by an estimated online survey, adapted from the PSQI Italian version. Including 1210 participants (age between 18-60 years old). The statistical analysis was carried out using SPSS version 22.0 software. Our results showed a significant change in sleeping quality during quarantine, the sleep timing markedly changed, we also noticed additional use of sleeping medications. Algerian scientists recommend to build public awareness and to provide necessary information regarding Algerian sleep quality, especially for Algerian adults.

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