Perspectives on symptom experiences and symptom reporting among individuals on hemodialysis.
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ABSTRACT:
SUBMITTER: Flythe JE
PROVIDER: S-EPMC6887921 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:Background: Dissociative states exist on a continuum from nonpathological forms, such as highway hypnosis and day-dreaming, to pathological states of derealization and depersonalization. Claims of communication with deceased individuals, known as mediumship, were once regarded as a pathological form of dissociation, but current definitions recognize the continuum and include distress and functional disability as symptoms of pathology. This study examined the relationship between dissociative symptoms and mediumship in a large convenience sample. Methods: Secondary analyses of cross-sectional survey data were conducted. The survey included demographics, the Dissociation Experience Scale Taxon (DES-T, score range 0-100), as well as questions about instances of mediumship experiences. Summary statistics and linear and logistic regressions explored the relationship between dissociative symptoms and mediumship endorsement. Results: 3,023 participants were included and were mostly middle-aged (51 years ± 16; range 17-96), female (70%), Caucasian (85%), college educated (88%), had an annual income over $50,000 (55%), and were raised Christian (71%) but were presently described as Spiritual but not Religious (60%). Mediumship experiences were endorsed by 42% of participants, the experiences usually began in childhood (81%), and 53% had family members who reported similar experiences. The mean DES-T score across all participants was 14.4 ± 17.3, with a mean of 18.2 ± 19.3 for those claiming mediumship experiences and 11.8 ± 15.2 for those who did not (t = -10.3, p < 0.0005). The DES-T threshold score for pathological dissociation is 30. Conclusions: On average, individuals claiming mediumship experiences had higher dissociation scores than non-claimants, but neither group exceeded the DES-T threshold for pathology. Future studies exploring dissociative differences between these groups may benefit from using more comprehensive measures of dissociative symptoms as well as assessments of functional impairment, which would help in discerning between pathological and non-pathological aspects of these experiences.
| S-EPMC5782403 | biostudies-literature
Project description:BackgroundPatient-reported outcome measures (PROMs) are standardized instruments used for assessing patients' perspectives on their health status at a point in time, including their health-related quality of life, symptoms, functionality, and physical, mental, and social wellbeing. For people with kidney failure receiving hemodialysis, addressing high symptom burden and complexity relies on care team members integrating their expertise to achieve common management goals. In the context of a program-wide initiative integrating PROMs into routine hemodialysis care, we aimed to explore patients' and clinicians' perspectives on the role of PROMs in supporting interdisciplinary symptom management.MethodsWe employed a qualitative descriptive approach using semi-structured interviews and observations. Eligible participants included adult patients receiving intermittent, outpatient hemodialysis for > 3 months, their informal caregivers, and hemodialysis clinicians (i.e., nurses, nephrologists, and allied health professionals) in Southern Alberta, Canada. Guided by thematic analysis, team members coded transcripts in duplicate and developed themes iteratively through review, refinement, and discussion.ResultsThirty-three clinicians (22 nurses, 6 nephrologists, 5 allied health professionals), 20 patients, and one caregiver participated in this study. Clinicians described using PROMs to coordinate care across provider types using the resources available in their units, whereas patients tended to focus on the perceived impact of this concerted care on symptom trajectory and care experience. We identified 3 overarching themes with subthemes related to the role of PROMs in interdisciplinary symptom management in this setting: (1) Integrating care for interrelated symptoms ("You need a team", conducive setting, role clarity and collaboration); (2) Streamlining information sharing and access (symptom data repository, common language for coordinated care); (3) Reshaping expectations (expectations for follow-up, managing symptom persistence).ConclusionsWe found that use of PROMs in routine hemodialysis care highlighted symptom interrelatedness and complexity and helped to streamline involvement of the interdisciplinary care team. Issues such as role flexibility and resource constraints may influence sustainability of routine PROM use in the outpatient hemodialysis setting.
| S-EPMC9859959 | biostudies-literature
Project description:BackgroundChronic kidney disease (CKD) is a major global health burden, and is associated with increased adverse outcomes, poor quality of life, and substantial health care costs. While there is an increasing need to build patient-centered pathways for improving CKD management in clinical care, data in this field are scarce.ObjectiveThe aim of this study was to understand patient-reported experiences, symptoms, outcomes, and treatment journeys among patients with CKD through a retrospective and qualitative approach based on data available through PatientsLikeMe (PLM), an online community where patients can connect and share experiences.MethodsAdult members (aged ≥18 years) with self-reported CKD within 30 days of enrollment, who were not on dialysis, and registered between 2011 and 2018 in the PLM community were eligible for the retrospective study. Patient demographics and disease characteristics/symptoms were collected from this retrospective data set. Qualitative data were collected prospectively through semistructured phone interviews in a subset of patients, and questions were oriented to better understand patients' experiences with CKD and its management.ResultsThe retrospective data set included 1848 eligible patients with CKD, and median age was 56 years. The majority of patients were female (1217/1841, 66.11%) and most were US residents (1450/1661, 87.30%). Of the patients who reported comorbidities (n=1374), the most common were type 2 diabetes (783/1374, 56.99%), hypertension (664/1374, 48.33%), hypercholesterolemia (439/1374, 31.95%), and diabetic neuropathy (376/1374, 27.37%). The most commonly reported severe or moderate symptoms in patients reporting these symptoms were fatigue (347/484, 71.7%) and pain (278/476, 58.4%). In the qualitative study, 18 eligible patients (13 females) with a median age of 60 years and who were mainly US residents were interviewed. Three key concepts were identified by patients to be important to optimal care and management: listening to patient needs, coordinating health care across providers, and managing clinical care.ConclusionsThis study provides a unique source of real-world information on the patient experience of CKD and its management by utilizing the PLM network. The results reveal the challenges these patients face living with an array of symptoms, and report key concepts identified by patients that can be used to further improve clinical care and management and inform future CKD studies.
| S-EPMC7391670 | biostudies-literature
Project description:Anxiety and anxiety sensitivity are positively related to accuracy in the perception of bodily sensations. At the same time, research consistently reports that these traits are positively related to bias, resulting in the report of more and more intense symptoms that poorly correspond with physiological dysfunction. The aim of this study was to test the relationship of accuracy and bias in interoception. Furthermore, we tested the impact of individual differences in negative affect and symptom report in daily life on interoceptive accuracy and bias. Individuals higher in symptom report in daily life and negative affect were marginally more accurate in an interoceptive classification task in which participants were asked to identify different respiratory stimuli (inducing breathing effort) as belonging to a high or low intensity category. At the same time, bias in overestimating intensity of stimuli was significantly increased in participants higher in symptom report and negative affect, but only for more ambiguous stimuli. Results illustrate that interoceptive accuracy and bias need to be considered independently to understand their interaction with psychological factors and to disentangle (mis)perception of bodily sensations from liberal or conservative perceptual decision strategies.
| S-EPMC4454884 | biostudies-literature
Project description:Rationale & objectiveCommunity house hemodialysis is a submodality of home hemodialysis that enables patients to perform hemodialysis independent of nursing or medical supervision in a shared house. This study describes the perspectives and experiences of patients using community house hemodialysis in New Zealand to explore ways this dialysis modality may support the wider delivery of independent hemodialysis care.Study designQualitative semi-structured in-depth interview study.Setting & participants25 patients who had experienced community house hemodialysis. Participants were asked about why they chose community house hemodialysis and their experiences and perspectives of this.Analytical approachThematic analysis using an inductive approach.Results25 patients were interviewed (14 men and 11 women, aged 31-65 years). Most were of Māori or Pacific ethnicity and in part- or full-time employment. More than two-thirds dialyzed for 20 hours a week or more. We identified 4 themes that described patients' experiences and perspectives of choosing and using community house hemodialysis: reducing burden on family (when home is not an option, minimizing family exposure to dialysis, maintaining privacy and self-identity, reducing the costs of home hemodialysis, and gaining a reprieve from home), offering flexibility and freedom (having a normal life, maintaining employment, and facilitating travel), control of my health (building independence and self-efficacy, a place of wellness, avoiding institutionalization, and creating a culture of extended-hour dialysis), and community support (building social inclusion and supporting peers).LimitationsNon-Māori and non-Pacific patient experiences of community house hemodialysis could not be explored.ConclusionsCommunity house hemodialysis is a dialysis modality that overcomes many of the socioeconomic barriers to home hemodialysis, is socially and culturally acceptable to Māori and Pacific people, and supports extended-hour hemodialysis and thereby promotes more equitable access to best practice services. It is therefore a significant addition to independent hemodialysis options available for patients.
| S-EPMC7380439 | biostudies-literature
Project description:ObjectiveIn two studies, we aimed at further elucidating the relationship between trait negative affectivity (NA) and habitual symptom reporting (HSR) by relating these variables to measures of executive function, trait questionnaires, and effects of emotion induction.MethodsHealthy female participants (N = 75) were selected on their scores for trait NA and for the Checklist for Symptoms in Daily Life. Three groups were compared: (1) low NA-low HSR; (2) high NA-low HSR; and (3) high NA-high HSR (low NA-high HSR did not occur). In study 1, participants underwent a Parametric Go/No-go Task and a Stroop Color-Word test, and trait questionnaires measured alexithymia and absorption. Forty-five participants (N = 15 in each group) were further engaged in study 2 to induce state NA using an affective picture paradigm.ResultsImpaired inhibition on the Stroop and Go/No go Task characterized high trait NA, but not high HSR, whereas alexithymia and absorption were elevated in HSR, regardless of trait NA. Negative picture viewing induced elevated state NA in all groups, but only high HSR also reported more bodily symptoms. This effect was moderated, but not mediated by state NA.ConclusionHigh trait NA is a vulnerability factor but not a sufficient condition to develop HSR. Deficient inhibition is related to the broad trait of NA, whereas the moderating effect of state NA on symptom reporting is specific for high HSR. Understanding processes related to alexithymia and absorption may specifically help to explain elevated HSR.
| S-EPMC4300148 | biostudies-literature
Project description:Patients on in-center dialysis spend significant amounts of time in the dialysis unit; additionally, managing ESRD affects many aspects of life outside the dialysis unit. To improve the care provided to patients requiring hemodialysis, their experiences and beliefs regarding treatment must be understood. This systematic review aimed to synthesize the experiences of patients receiving in-center hemodialysis.We searched Embase, MEDLINE, CINAHL, PsychINFO, Google Scholar, and reference lists for primary qualitative studies published from 1995 to 2015 that explored the experiences of adult patients receiving treatment with in-center hemodialysis. A thematic synthesis was conducted.Seventeen studies involving 576 patients were included in the synthesis. Four analytic themes were developed. The first theme (a new dialysis-dependent self) describes the changes in identity and perceptions of self that could result from dialysis dependence. The second theme (a restricted life) describes the physical and emotional constraints that patients described as a consequence of their dependence. Some patients reported strategies that allowed them to regain a sense of optimism and influence over the future, and these contributed to the third theme (regaining control). The first three themes describe a potential for change through acceptance, adaption, and regaining a sense of control. The final theme (relationships with health professionals) describes the importance of these relationships for in-center patients and their influence on perceptions of power and support. These relationships are seen to influence the other three themes through information sharing, continuity, and personalized support.Our synthesis has resulted in a framework that can be used to consider interventions to improve patients' experiences of in-center hemodialysis care. Focusing on interventions that are incorporated into the established relationships that patients have with their health care professionals may enable patients to progress toward a sense of control and improve satisfaction with care.
| S-EPMC4934845 | biostudies-other
Project description:BACKGROUND AND OBJECTIVES:Individuals receiving in-center hemodialysis experience a high symptom burden that detrimentally affects their quality of life. There are few evidence-based interventions for symptom relief in this population. To stimulate innovation in symptom management, data on patient symptom prioritization and treatment preferences are needed. We undertook this study to (1) identify patient-prioritized symptoms for the development of symptom relief therapies and (2) elicit preferences for treatments among individuals receiving hemodialysis. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS:We conducted a mixed methods study that included focus groups in Carrboro, North Carolina; Tucson, Arizona; and Seattle, Washington and a nationally distributed online survey. Focus group transcripts were analyzed for patterns, and the highest priority symptoms were determined on the basis of frequency and report severity. We used focus group findings to inform survey items. Focus group and survey results were crossvalidated and synthesized for final symptom prioritization. RESULTS:There were 32 participants across three focus groups and 87 survey respondents from 27 states in the United States. The physical symptoms of insomnia, fatigue, muscle cramping, and nausea/vomiting and the mood symptoms of anxiety and depressed mood were reported by participants in all focus groups. Among survey respondents, fatigue (94%), cramping (79%), and body aches (76%) were the most common physical symptoms, and feeling depressed (66%), worried (64%), and frustrated (63%) were the most common mood symptoms. The top-prioritized symptoms were consistent across focus group and survey participants and included the physical symptoms insomnia, fatigue, and cramping and the mood symptoms anxiety, depression, and frustration. Participants indicated that symptom frequency, duration, unpredictability, and social and financial effects factored most heavily into symptom prioritization. CONCLUSIONS:Patients prioritized the physical symptoms of insomnia, fatigue, and cramping and the mood symptoms of anxiety, depression, and frustration as the top symptoms for which to find new therapies.
| S-EPMC5969481 | biostudies-literature
Project description:IntroductionMost patients with kidney failure commence and continue hemodialysis (HD) thrice weekly. Incremental initiation (defined as HD less than thrice weekly) is increasingly considered to be safe and less burdensome, but little is known about patients' perspectives. We aimed to describe patients' priorities and concerns regarding incremental HD.MethodsPatients currently, previously, or soon to be receiving HD in Australia participated in two 90-minute online workshops to discuss views about HD focusing on incremental start and priorities for trial outcomes. Transcripts were analyzed using thematic analysis. Outcomes were ranked on the basis of the sum of participants' priority scores (i.e., single allocation of 3 points for most important, 2 for second, and 1 for third most important outcome).ResultsAll 26 participants (1 caregiver and 25 patients) preferred an incremental HD approach. The top prioritized outcomes were quality of life (QOL) (56 points), residual kidney function (RKF) (27 points), and mortality (16 points). The following 4 themes underpinning outcome priorities, experience, and safety concerns were identified: (i) unpreparedness and pressure to adapt, (ii) disruption to daily living, (iii) threats to safety, and (iv) hope and future planning.ConclusionPatients with kidney failure preferred an incremental start to HD to minimize disruption to daily living and reduce the negative impacts on their education, ability to work, and family life. QOL was the most critically important outcome, followed by RKF and survival.
| S-EPMC10014336 | biostudies-literature
Project description:ImportanceAccurate documentation of patient symptoms in the electronic medical record (EMR) is important for high-quality patient care.ObjectiveTo explore inconsistencies between patient self-report on an Eye Symptom Questionnaire (ESQ) and documentation in the EMR.Design, setting, and participantsThis investigation was an observational study in comprehensive ophthalmology and cornea clinics at an academic institution among a convenience sample of 192 consecutive eligible patients, of whom 30 declined participation. Patients were recruited at the Kellogg Eye Center from October 1, 2015, to January 31, 2016. Patients were eligible to be included in the study if they were 18 years or older.Main outcomes and measuresConcordance of symptoms reported on an ESQ with data recorded in the EMR. Agreement of symptom report was analyzed using κ statistics and McNemar tests. Disagreement was defined as a negative symptom report or no mention of a symptom in the EMR for patients who reported moderate to severe symptoms on the ESQ. Logistic regression was used to investigate if patient factors, physician characteristics, or diagnoses were associated with the probability of disagreement for symptoms of blurry vision, pain or discomfort, and redness.ResultsA total of 162 patients (324 eyes) were included. The mean (SD) age of participants was 56.6 (19.4) years, 62.3% (101 of 162) were female, and 84.9% (135 of 159) were white. At the participant level, 33.8% (54 of 160) had discordant reporting of blurry vision between the ESQ and EMR. Likewise, documentation was discordant for reporting glare (48.1% [78 of 162]), pain or discomfort (26.5% [43 of 162]), and redness (24.7% [40 of 162]), with poor to fair agreement (κ range, -0.02 to 0.42). Discordance of symptom reporting was more frequently characterized by positive reporting on the ESQ and lack of documentation in the EMR (Holm-adjusted McNemar P < .03 for 7 of 8 symptoms except for blurry vision [P = .59]). Return visits at which the patient reported blurry vision on the ESQ had increased odds of not reporting the symptom in the EMR compared with new visits (odds ratio, 5.25; 95% CI, 1.69-16.30; Holm-adjusted P = .045).Conclusions and relevanceSymptom reporting was inconsistent between patient self-report on an ESQ and documentation in the EMR, with symptoms more frequently recorded on a questionnaire. These results suggest that documentation of symptoms based on EMR data may not provide a comprehensive resource for clinical practice or "big data" research.
| S-EPMC5404734 | biostudies-literature