Seizure Forecasting: Patient and Caregiver Perspectives.
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ABSTRACT:
SUBMITTER: Grzeskowiak CL
PROVIDER: S-EPMC8488220 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:ObjectivesTo explore patient and caregiver experiences, preferences, and attitudes toward the provision and receipt of caregiving assistance with medical tasks.DesignQualitative study consisting of in-depth interviews with 20 patient-caregiver dyads.SettingCommunity and academic-affiliated primary care clinics.ParticipantsIndividuals aged 65 or older with 2 or more health conditions and their family caregivers (n=20 patient-caregiver dyads).MeasurementsOpen-ended questions were asked about the tasks that the patient and caregiver performed to manage the patient's health conditions; questions were designed to elicit participant reactions and attitudes toward the help they provided or received. Transcripts were analyzed using the constant comparative method.ResultsParticipant preferences and attitudes toward the receipt and provision of disease management tasks were highly personal. Participant responses clustered into 2 caregiving typologies: supportive caregiving relationships and conflicted caregiving relationships. Supportive relationships were characterized by patient-caregiver agreement about caregiver level of involvement, agreement about one another's competency to perform disease-related tasks, mutual understanding, collaborative decision-making and disease management, and use of family and formal caregiving. Conflicted relationships were characterized by disagreement about caregiver level of involvement, disagreement about one another's competency to perform disease management tasks, underappreciation of one another's experiences, disagreement over decision-making and disease management, and use of formal caregiving.ConclusionsThe views that patient-caregiver dyads expressed in this study illustrate the varied preferences and attitudes toward caregiving assistance with multiple health conditions. These findings support a dyadic approach to evaluating and addressing patient and caregiver needs and attitudes toward provision of assistance.
| S-EPMC6710828 | biostudies-literature
Project description:BackgroundSince the onset of the COVID-19 pandemic, virtual care solutions have been rapidly adopted across the country to provide safe, quality care to diverse patient populations. The objective of this qualitative case study was to understand patient and caregiver experiences of virtual care to identify barriers and gather suggestions to address them.MethodsIn this patient-oriented project, we sought to understand gaps in virtual care experienced by patients and caregivers, using virtual focus groups. With the assistance of a patient research liaison, we engaged 2 patient partners as full partners; they participated in study conception, data collection, data analysis and knowledge translation. Recruitment was done through email by disseminating the study poster to 30 community organizations and health units in Ontario and British Columbia. We conducted a constructivist, qualitative study guided by grounded theory methodology. One researcher employed in-vivo coding, followed by axial coding with focus group participants, followed by selective coding with the study team. The study took place from November to December 2020.ResultsWe conducted 6 focus groups with 13 patients and 5 caregivers. The analysis resulted in 6 major themes and 17 minor themes. Key findings showed that barriers related to access to technology and Internet, language and cultural differences were challenges to virtual care. Participants identified special considerations surrounding caregiver and family involvement; privacy, consent and confidentiality; and the patient-physician relationship. Participants suggested that technology and the Internet be universally accessible and that virtual care modalities be integrated (e.g., consolidated patient portal) to improve virtual care.InterpretationThere are multiple patient-identified barriers to accessing virtual care in Canada; patients can provide insights into ways to address these barriers. Future research should include robust patient engagement to explore ways to address these challenges and barriers to ensure that virtual care can be equitable, accessible and safe for all users.Plain language summaryAlthough virtual care has been rapidly adopted and scaled up in health care institutions across the country, few improvements informed by patient and caregiver experiences have been made. Driven by concerns expressed by patient partners, our study team undertook a patient-partnered qualitative study to understand the barriers of virtual care from the perspectives and experiences of patients and caregivers. Our study team created the interview guide drawing from our previous patient-oriented qualitative studies and designed an orientation package to provide resources related to the focus groups and to introduce participants to the study team. Drawing from local health teams, clinics and patient advisory groups, the study team recruited 13 patients and 5 caregivers to participate in 6 focus group interviews. An analysis based on grounded theory was undertaken, with participation from both the study team and participants. Lack of access to technology or Internet and language barriers were determined to be the primary challenges in virtual care. Special considerations to caregiver and family involvement, privacy and confidentiality, as well as the patient-physician relationship were considered priorities to improving access to virtual care. Participants offered recommendations and potential solutions to address barriers and challenges in virtual care, which can serve to encourage large-scale policy and programmatic changes in patient-centred ways.
| S-EPMC8896530 | biostudies-literature
Project description:Adolescent cancer patients and their caregivers have demonstrated willingness to participate in invasive biological sampling, either for their own potential benefit or for research purposes. However, many malignancies occur primarily in prepubescent patients and there are no similar studies in this population. Our study objective was to assess the willingness of caregivers to consent to research studies involving invasive biological sampling in children ≤ 13 years of age. Participants completed a survey assessing their willingness to allow various procedures both with and without clinical benefit to their children. Most respondents were willing to allow additional blood draws regardless of potential benefit to their children (95.6% were willing when there would be benefits and 95.6% were willing when there would not). Although the overall willingness was lower with other hypothetical procedures, the majority of respondents were still willing to allow additional biopsies for research purposes. Caregivers of young children with cancer will allow their children to undergo additional invasive procedures for research purposes. This willingness decreased with more invasive procedures without potential direct benefit, but interest remained in more than half of participants. Caregivers for young patients with cancer should be approached for participation in future biological/correlative studies.
| S-EPMC9221797 | biostudies-literature
Project description:The unpredictability of epileptic seizures exposes people with epilepsy to potential physical harm, restricts day-to-day activities, and impacts mental well-being. Accurate seizure forecasters would reduce the uncertainty associated with seizures but need to be feasible and accessible in the long-term. Wearable devices are perfect candidates to develop non-invasive, accessible forecasts but are yet to be investigated in long-term studies. We hypothesized that machine learning models could utilize heart rate as a biomarker for well-established cycles of seizures and epileptic activity, in addition to other wearable signals, to forecast high and low risk seizure periods. This feasibility study tracked participants' (n = 11) heart rates, sleep, and step counts using wearable smartwatches and seizure occurrence using smartphone seizure diaries for at least 6 months (mean = 14.6 months, SD = 3.8 months). Eligible participants had a diagnosis of refractory epilepsy and reported at least 20 seizures (mean = 135, SD = 123) during the recording period. An ensembled machine learning and neural network model estimated seizure risk either daily or hourly, with retraining occurring on a weekly basis as additional data was collected. Performance was evaluated retrospectively against a rate-matched random forecast using the area under the receiver operating curve. A pseudo-prospective evaluation was also conducted on a held-out dataset. Of the 11 participants, seizures were predicted above chance in all (100%) participants using an hourly forecast and in ten (91%) participants using a daily forecast. The average time spent in high risk (prediction time) before a seizure occurred was 37 min in the hourly forecast and 3 days in the daily forecast. Cyclic features added the most predictive value to the forecasts, particularly circadian and multiday heart rate cycles. Wearable devices can be used to produce patient-specific seizure forecasts, particularly when biomarkers of seizure and epileptic activity cycles are utilized.
| S-EPMC8320020 | biostudies-literature
Project description:Background and objectivesThe language used to communicate important aspects of kidney health is inconsistent and may be conceptualized differently by patients and health professionals. These problems may impair the quality of communication, care, and patient outcomes. We aimed to describe the perspectives of patients on terms used to describe kidney health.Design, setting, participants, & measurementsPatients with CKD (n=54) and caregivers (n=13) from the United States, United Kingdom, and Australia participated in ten focus groups to discuss terms for kidney health (including kidney, renal, CKD, ESKD, kidney failure, and descriptors for kidney function). We analyzed the data using thematic analysis.ResultsWe identified four themes: provoking and exacerbating undue trauma (fear of the unknown, denoting impending death, despair in having incurable or untreatable disease, premature labeling and assumptions, judgment, stigma, and failure of self); frustrated by ambiguity (confused by medicalized language, lacking personal relevance, baffled by imprecision in meaning, and/or opposed to obsolete terms); making sense of the prognostic enigma (conceptualizing level of kidney function, correlating with symptoms and effect on life, predicting progression, and need for intervention); and mobilizing self-management (confronting reality, enabling planning and preparation, taking ownership for change, learning medical terms for self-advocacy, and educating others).ConclusionsThe obscurity and imprecision of terms in CKD can be unduly distressing and traumatizing for patients, which can impair decision making and self-management. Consistent and meaningful patient-centered terminology may improve patient autonomy, satisfaction, and outcomes.
| S-EPMC7341768 | biostudies-literature
Project description:BackgroundLittle is known about patients' perception of care and management of Crohn's perianal fistulas (CPF). This study was conducted to understand US patient and caregiver attitudes and challenges to CPF care.MethodsPatients with CPF and caregivers of patients with CPF completed a 36-question survey about their perceptions and challenges regarding the diagnosis, treatment, and overall management of CPF. Patients/caregivers were recruited via online Crohn's and fistula support group websites and forums and via their gastroenterologists (GEs) and surgeons from October 2020 through January 2021.ResultsThe survey was completed by 96 patients and 54 caregivers. Respondents reported over 60% and 14%-23% of CPF were diagnosed and treated by a GE or surgeon, respectively. Nearly all patients/caregivers wanted to be involved in treatment decision-making with their physicians (81%). While the majority of patients/caregivers were satisfied with their quality of care (65%) and access to care (67%), racial disparities exist and there is room for improvement. A smaller proportion of non-White versus White patients/caregivers reported satisfaction with care quality (39% vs 72%, respectively) and access to care (57% vs 69%, respectively). Half of non-White patient/caregivers (50%) versus 69% of White patient/caregivers knew where to access CPF information. Most patients/caregivers (69%) stated that they would benefit from more information on managing day-to-day CPF symptoms. Significant barriers perceived by patients/caregivers to receiving optimal CPF care included lack of effective treatments (69%) and lack of access to specialist care (68%).ConclusionsImprovements in multidisciplinary CPF care are required to optimize treatment.
| S-EPMC10803099 | biostudies-literature
Project description:BackgroundFrailty is associated with poor outcomes for patients on dialysis and is traditionally measured using tools that assess physical impairment. Alternate measurement tools highlight cognitive and functional domains, requiring clinician, patient, and/or caregiver input. In this study, we compared frailty measures for incident dialysis patients that incorporate patient, clinician, and caregiver perspectives with an aim to contrast the measured prevalence of frailty using tools derived from different conceptual frameworks.MethodsA prospective cohort study of incident dialysis patients was conducted between February 2014 and June 2015. Frailty was assessed at dialysis onset using: 1) modified definition of Fried Phenotype (Dialysis Morbidity Mortality Study definition, DMMS); 2) Clinical Frailty Scale (CFS); 3) Frailty Assessment Care Planning Tool (provides CFS grading, FACT-CFS); and 4) Frailty Index (FI). Measures were compared via correlation and sensitivity/specificity analyses.ResultsA total of 98 patients participated (mean age of 61 ± 14 years). Participants were primarily Caucasian (91%), male (58%), and the majority started on hemodialysis (83%). The median score for both the CFS and FACT-CFS was 4 (interquartile range of 3-5). The mean FI score was 0.31 (standard deviation ± 0.16). The DMMS identified 78% of patients as frail. The FACT-CFS demonstrated highest correlation (r = 0.71) with the FI, while the DMMS was most sensitive (97%, 100%) and a CFS ≥ 5 most specific (100%, 77%) at corresponding FI cutoff values (>0.21, >0.45).ConclusionsFrailty assessments of incident dialysis patients that include clinician, caregiver and patient perspectives have moderate to strong correlation with the FI. At specified FI cutoff values, the FACT-CFS and DMMS are highly sensitive measures of frailty. The CFS and FACT-CFS may represent viable alternative screening tools in dialysis patients.
| S-EPMC5412047 | biostudies-literature
Project description:Background: Specialty palliative care (PC) is underutilized for patients with end-stage liver disease (ESLD); however, studies exploring patient and caregiver perceptions of PC are lacking. Objectives: To explore patient and caregiver knowledge, perceptions, and preferences about PC in ESLD management. Setting/Subjects: Individuals with ESLD and their informal caregivers were recruited from a large academic medical center in the United States. Design: We conducted semistructured interviews with 15 patients with ESLD and 14 informal caregivers. Purposive sampling was used to balance both transplant-listed and transplant-ineligible patients. We used a brief description of PC to explore participants' knowledge, perceptions, and preferences about PC. Two raters coded interviews independently (κ = 0.95) using template analysis. Results: Participants' knowledge about PC came primarily from their loved ones' experiences with PC, with many conflating PC with end-of-life care. Transplant-listed patients expressed concern that a PC referral would negatively impact their likelihood of receiving a liver transplant. After hearing a brief description of PC, nearly all participants believed that patients with ESLD should learn about PC soon after diagnosis to help support their illness understanding and coping. Conclusions: Study participants reported limited knowledge of PC and often perceived it as hospice care. After receiving education on PC, nearly all participants, regardless of transplant eligibility, advocated for early introduction of PC in ESLD care. Interventions are needed to educate patients with ESLD and their caregivers on the potential role of PC to overcome misperceptions of PC and allow earlier integration of PC into ESLD management.
| S-EPMC9208853 | biostudies-literature
Project description:ObjectivesShared decision making is essential to deprescribing unnecessary or harmful medications in older adults, yet patients' and caregivers' perspectives on medication value and how this affects their willingness to discontinue a medication are poorly understood. We sought to identify the most significant factors that impact the perceived value of a medication from the perspective of patients and caregivers.DesignQualitative study using focus groups conducted in September and October 2018.SettingParticipants from the Pepper Geriatric Research Registry (patients) and the Pitt+Me Registry (caregivers) maintained by the University of Pittsburgh.ParticipantsSix focus groups of community-dwelling adults aged 65 years or older, or their caregivers, prescribed five or more medications in the preceding 12 months.MeasurementsWe sought to identify (1) general views on medication value and what makes medication worth taking; (2) how specific features such as cost or side effects impact perceived value; and (3) reactions to clinical scenarios related to deprescribing.ResultsWe identified four themes. Perceived effectiveness was the primary factor that caused participants to consider a medication to be of high value. Participants considered a medication to be of low value if it adversely affected quality of life. Participants also cited cost when determining value, especially if it resulted in material sacrifices. Participants valued medications prescribed by providers with whom they had good relationships rather than valuing level of training. When presented with clinical scenarios, participants ably weighed these factors when determining the value of a medication and indicated whether they would adhere to a deprescribing recommendation.ConclusionWe identified that perceived effectiveness, adverse effects on quality of life, cost, and a strong relationship with the prescriber influenced patients' and caregivers' views on medication value. These findings will enable prescribers to engage older patients in shared decision making when deprescribing unnecessary medications and will allow health systems to incorporate patient-centered assessment of value into systems-based deprescribing interventions. J Am Geriatr Soc 68:746-753, 2020.
| S-EPMC7252489 | biostudies-literature
Project description:One of the significant modifications to the Common Rule is the requirement that prospective participants be given information sufficient for a "reasonable person." However, research is limited on what types of information patients, caregivers, and providers consider "key information." Although certain aspects of informed consent (IC) may be considered standard, considering the individualized needs and preferences of patients is necessary for patient-centered consent. In this study, we qualitatively examined the specific types of information that patients and caregivers involved in hematopoietic cell transplantation (HCT), as well as their providers, believe to be important and necessary as part of the IC process to make a decision about participating in clinical research; and further, how these perspectives are aligned. Our findings suggest opportunities for improving the IC document and process by emphasizing information of importance to patients, such as the benefits to others and contributions to science that are associated with participation in clinical research. Furthermore, increasing patient engagement during the IC process may allow providers to streamline information that is aligned with patient information needs and preferences.
| S-EPMC5743761 | biostudies-literature