scholarly journals Patient-Reported Satisfaction and Associated Changes in Health and Behavior Pre- and Post- Project INSPIRE: a Comprehensive Hepatitis C Care Coordination Program

2020 ◽  
Author(s):  
Regan Deming ◽  
Anna Mageras ◽  
Caroline Davidson ◽  
Marie Bresnahan ◽  
Sheila Reyonoso ◽  
...  
Keyword(s):  
Hepatitis C ◽  
Alcohol Use ◽  
Care Coordination ◽  
Self Efficacy ◽  
Post Intervention ◽  
The Past ◽  
Individualized Care ◽  
Patient Reported ◽  
Ed Visits ◽  
And Behavior

Abstract Background Individuals infected with hepatitis C (HCV) often present with co-morbidities and complex socio-behavioral risk factors. Project INSPIRE was a care coordination and telementoring demonstration project which aimed to treat and cure HCV-infected patients while providing them with services and education to improve overall health outcomes and self-sufficiency. We examined changes in HCV-related health and behavior associated with completion of Project INSPIRE (the “intervention”). Methods Patients were enrolled into Project INSPIRE at clinical sites where they received HCV clinical care paired with care coordination services. Baseline and post-intervention surveys were distributed to participants in-person at a clinical site and/or via mail at two time-points, one before and one after the intervention. Surveys were mailed back to the researchers by participants, and participant-identifying information was used to link survey responses to clinical data for each respondent. Logistic models using generalized estimating equations to account for partially overlapping observations examined the association between intervention participation and changes in self-reported overall health, emergency department (ED) visits and hospitalizations in the past 6 months, drug and alcohol use in the past 6 months, HCV knowledge, and general self-efficacy, adjusting for potential demographic and sociobehavioral confounding variables. Results The response rates for complete and partial surveys were 14.0% of 883 for baseline and 9.9% of 1,552 for post-intervention. In multivariable analyses (N=269, of which 50 were paired and 219 were unpaired), INSPIRE intervention participation was associated with a decreased odds of self-reported ED visits (OR: 0.34, 95% CI: 0.20–0.57), hospitalizations (OR: 0.30, 95% CI: 0.16–0.57), alcohol use (OR: 0.35, 95% CI: 0.18–0.69), and injection drug use (OR: 0.09, 95% CI: 0.02–0.34), and a 6.8% (CI: 1.6-12.2%) increase in reported self-efficacy (p=0.01). Conclusions Survey results suggest that INSPIRE successfully improved participant health behavior and self-efficacy, indicating the intervention’s value to patients, providers, and insurance companies beyond the immediate benefits of HCV treatment and cure. Participants also had a generally positive experience working with their care teams, indicating that further research should explore how an individualized care team can improve retention and patient referral rates compared with the HCV standard of care.

scholarly journals Patient Reported Outcomes Among Systemic Mastocytosis (SM) Patients in Routine Clinical Practice: Results from the TouchStone Survey

Blood ◽  
2020 ◽  
Vol 136 (Supplement 1) ◽  
pp. 37-37
Author(s):  
Ruben A. Mesa ◽  
Erin M. Sullivan ◽  
David Dubinsky ◽  
Brittany Carroll ◽  
Valerie M. Slee ◽  
...  
Keyword(s):  
Mast Cell ◽  
Research Funding ◽  
Patient Reported Outcomes ◽  
Publicly Traded ◽  
Ability To Work ◽  
The Past ◽  
Stomach Pain ◽  
Patient Reported ◽  
Ed Visits ◽  
Mean Time

Introduction: SM is a rare, clonal mast cell neoplasm characterized by uncontrolled proliferation and activation of mast cells driven by the KIT D816V mutation, which leads to severe and unpredictable symptoms. This study evaluated disease and healthcare system burden of SM in a real-world treatment setting in the US. Methods: In this cross-sectional study, SM patients recruited through the Mast Cell Connect Registry completed an online survey. The 100-item survey consists of symptom assessments using the ISM-SAF© and widely used patient-reported outcomes (PRO) measures including the Short Form (SF)-12, Work Productivity and Activity Impairment (WPAI), and questions regarding SM-related medication and physician and emergency department (ED) visits during the past year. Patients ≥18 years with a self-reported diagnosis were included after providing informed consent. Established PRO measures were scored using established scoring algorithms. Data from the first 30 patients enrolled were analyzed using descriptive statistics. Results: Thirty patients completed the survey: 87% female; mean age of 54 years; mean time since diagnosis of 8 years; mean time from symptom onset to diagnosis of 7 years; 80% reported indolent SM, 10% reported aggressive SM, 3% reported smoldering SM, and the remainder (7%) were uncertain of their type. Ninety percent reported ≥10 symptoms during the past year, the most bothersome being abdominal/stomach pain (17%), anaphylactic episodes (13%), diarrhea/loose stools (13%), and fatigue (10%). Most patients indicated they have moderate (43%) or severe (33%) disease. Symptom Burden and Quality of Life (QoL) Impact Mean ± SD mental and physical component summary scores from the SF-12 were 44 ± 1.8 and 43 ± 2.5, respectively, indicating below average health and mental well-being. The mean total symptom score (TSS) from the ISM-SAF was 50, with >28 indicating moderate-severe SM. Nearly all (27/30) patients reported that they strongly agreed (27%), agreed (40%) or somewhat agreed (23%) that SM had a negative impact on their QoL, and 50% (15/30) reported feeling a great deal (17%), quite a bit (10%), or somewhat (23%) depressed or discouraged due to their disease. Use of Healthcare Services & Medications Patients reported encounters with multiple physicians over the course of 1 year (Table). Most patients (90%) reported taking ≥2 over-the-counter (OTC) medications, and 40% of patients reported taking >3 prescription medications to manage SM. Twenty percent of survey respondents visited the ED due to anaphylaxis, with 50% of these patients requiring ED care for anaphylaxis on 3 different occasions. Fifty-seven percent (17/30) of patients reported managing at least 1 anaphylactic episode at home without visiting the ED, with 4 of these patients reporting ≥12 anaphylactic episodes within the past year. Work Impairment Limited activities due to pain attributed to SM were reported by 60% (18/30) of patients, and 56% (17/30) of patients indicated that pain interfered with their ability to work. 17% of respondents reported they were unable to work for pay, 46% of patients reported having to reduce work hours because of SM, and 20% of patients had filed for disability, all due to SM. Conclusions: Despite close management by healthcare providers, and taking prescription and OTC medications, early findings from the TouchStone survey show that the majority of SM patients continue to report significant burden of disease, including inadequate symptom control, negative effects on QoL, reduced ability to work, frequent physician visits to manage SM and multiple, potentially costly, ED visits. These findings suggest high unmet medical need underscoring the value of more effective therapeutic interventions. Disclosures Mesa: LaJolla Pharma: Consultancy; Novartis: Consultancy; Sierra Onc: Consultancy; Abbvie: Research Funding; Celgene: Research Funding; CTI: Research Funding; Genetech: Research Funding; Incyte: Research Funding; Promedior: Research Funding; Samus: Research Funding. Sullivan:Blueprint Medicines Corporation: Current Employment, Current equity holder in publicly-traded company. Dubinsky:Blueprint Medicines Corporation: Current Employment, Current equity holder in publicly-traded company. Carroll:Blueprint Medicines Corporation: Consultancy, Current equity holder in publicly-traded company. Mathias:Blueprint Medicines Corporation: Other: employed by Health Outcomes Solutions, which received funding Blueprint for providing assistance in developing the Touchstone survey. Castells:Annals of Allergy, Asthma & Immunology: Other: Editorial Board; UpToDate: Other: Author fee; Blueprint Medicines Corporation: Consultancy, Other: Clinical trials: Principle Investigator.

Individualized cancer follow-up supported by electronic Patient-Reported Outcomes: Development and evaluation (Preprint)

2020 ◽  
Author(s):  
Sissel Ravn ◽  
Henriette Vind Thaysen ◽  
Lene Seibaek ◽  
Victor Jilbert Verwaal ◽  
Lene Hjerrild Iversen
Keyword(s):  
Ct Scan ◽  
Advanced Cancer ◽  
Patient Reported Outcomes ◽  
Cost Benefit Analysis ◽  
Cost Benefit ◽  
Structured Interviews ◽  
European Organization ◽  
Individualized Care ◽  
Patient Reported

BACKGROUND Cancer survivors experience unmet needs during follow-up. Besides recurrence, a follow-up includes detection of late side effects, rehabilitation, palliation and individualized care. OBJECTIVE We aimed to describe the development and evaluate the feasibility of an intervention providing individualized cancer follow-up supported by electronic patient-reported outcomes (e-PRO). METHODS The study was carried out as an interventional study at a Surgical and a Gynecological Department offering complex cancer surgery and follow-up for advanced cancer. The e-PRO screened for a priori defined clinical important symptoms and needs providing individualized follow-up. We included following questionnaires in the e-PRO; the general European Organization for Research and Treatment of Cancer (EORTC) QLQ-C30 and the EORTC validated for colorectal and ovarian cancer patients. To support individualization, we included three prioritized issues of the patient’s preference in each e-PRO. The response-algorithm was aggregated based on the severity of the patient’s response. To ensure the sensitivity of the e-PRO, we performed semi-structured interviews with five patients. All clinicians (surgeons and gynecologists) performing the consultations reviewed the e-PRO. The evaluation was divided in two, 1)The feasibility was assessed by a)Patients’ response rate of the e-PRO, b)Number of follow-up visits documenting the use of e-PRO and c)Patients’ prioritized issues prior to the consultation(‘yes’ / ‘no’), and after the follow-up 2)Patients assessment of a)The need and purpose of the follow-up visit and b)the support provided during the follow-up visit. RESULTS In total, 187 patients were included in the study, of which 73%(n=136/187) patients responded to the e-PRO and were subjected to an individualized follow-up. The e-PRO was documented as applied in 79% of the follow-up visits. In total, 23% of the prioritized issues did not include a response. Stratified by time since surgery, significantly more patients did not fill out a prioritized issue had a follow-up >6 months since surgery. In total, 72 % follow-up visits were evaluated to be necessary in order to discuss the outcome of the CT scan, symptoms, and/or prioritized issues. Contrary, 19% of the follow-up visits were evaluated to be necessary only to discuss the result of the CT scan. A range from 19.3–56.3% of patients assessed the follow-up visit to provide support with respect to physical (42% of patients), mental (56%), sexual (19%) or dietary (27%) issues. Further, a range from 34–60% of the patients reported that they did not need support regarding physical (43% of patients), mental (34%), sexual (63%) or dietary (57%) issues. CONCLUSIONS An individualized follow-up based on e-PRO is feasible, and support most patients surgically treated for advanced cancer. However, results indicate that follow-up based on e-PRO may not be beneficial for all patients and circumstances. A thorough cost-benefit analysis may be warranted before implementation in routine clinic.

Brains as Engines of Association

2019 ◽  
Author(s):  
Dale Purves
Keyword(s):  
Neural Systems ◽  
Neural Function ◽  
Trial And Error ◽  
Nervous Systems ◽  
The Past ◽  
Sensing Systems ◽  
Lifetime Experience ◽  
Survival And Reproduction ◽  
Pros And Cons ◽  
And Behavior

Brains as Engines of Association seeks an operating principle of the human brain and is divided into four parts. The first part (“What Nervous Systems Do for Animals”) is intended to set the stage for understanding the emergence of neural systems as promoting what all organisms must accomplish: survival and reproduction. The second part (“Neural Systems as Engines of Association”) lays out the general argument that biological sensing systems face a daunting problem: they cannot measure the parameters of the world in the way physical instruments can. As a result, nervous systems must make and update associations (synaptic connections) on the basis of empirical success or failure over both evolutionary and individual time. The third part (“Evidence that Neural Systems Operate Empirically”) reviews evidence accumulated over the past 20 years that supports this interpretation in vision and audition, the sensory systems that have been most studied from this or any other perspective. Finally, the fourth part (“Alternative Concepts of Neural Function”) considers the pros and cons of other interpretations of how brains operate. The overarching theme is that the nervous systems of humans and every other animal operate on the basis associations between stimuli and behavior made by trial and error over species and lifetime experience.

Temporal Focus

2020 ◽  
Author(s):  
Abbie J. Shipp
Keyword(s):  
Well Being ◽  
Psychology Research ◽  
The Past ◽  
Research Areas ◽  
The Future ◽  
Behavior Based ◽  
The Individual ◽  
And Behavior ◽  
Temporal Focus

Temporal focus is the individual tendency to characteristically think more or less about the past, present, and future. Although originally rooted in early work from psychology, research on temporal focus has been steadily growing in a number of research areas, particularly since Zimbardo and Boyd’s (1999) influential article on the topic. This chapter will review temporal focus research from the past to the present, including how temporal focus has been conceptualized and measured, and which correlates and outcomes have been tested in terms of well-being and behavior. Based on this review, an agenda for research is created to direct temporal focus research in the future.

Development of a multimedia intervention to improve pneumoconiosis prevention in construction workers using RE-AIM framework

2021 ◽  
Author(s):  
Jieling Chen ◽  
Cho Lee Wong ◽  
Bernard Man Hin Law ◽  
Winnie Kwok Wei So ◽  
Doris Yin Ping Leung ◽  
...  
Keyword(s):  
South Asian ◽  
Educational Intervention ◽  
Self Efficacy ◽  
Intervention Mapping ◽  
Intervention Development ◽  
Educational Interventions ◽  
Construction Workers ◽  
Post Intervention ◽  
Cohen’S D ◽  
Cohen's D

Summary Pneumoconiosis is a common occupational lung disease among construction workers. Educational interventions targeting specific ethnic groups of construction workers are of benefit for pneumoconiosis prevention. The aim of this study was to develop a multimedia educational intervention for pneumoconiosis prevention for South Asian construction workers, and to evaluate its feasibility, acceptability and effectiveness in increasing knowledge of pneumoconiosis, modifying beliefs about pneumoconiosis, and enhancing intention to implement measures for its prevention among the workers. This evaluation was performed using the Reach-Effectiveness-Adoption-Implementation-Maintenance framework. A one-group design was adopted and intervention mapping was used to guide the process of intervention development, while the Health Belief Model guided the development of intervention content. The intervention was delivered at construction sites, ethnic minority associations and South Asian community centres. Data were collected via surveys completed at pre-intervention, post-intervention and 3 months after the intervention. A total of 1002 South Asian construction workers participated in the intervention. The participants reported a moderate-to-large increase in knowledge, perceived susceptibility, perceived severity, perceived benefits, cues to action and self-efficacy (Cohen’s d: 0.37–0.89), a small reduction in perceived barriers (Cohen’s d = 0.12) and a moderate improvement in attitudes and intention to practice (Cohen’s d: 0.45, 0.51) at post-intervention. A follow-up survey of 121 participants found that the implementation of preventive measures appeared to increase. Overall, the findings demonstrate that the implementation of a culturally adapted multimedia educational intervention could be an effective approach to improving knowledge, self-efficacy and intention regarding pneumoconiosis prevention among South Asian construction workers.

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