Patient-Reported Disease-Modifying Therapy Adherence in the Clinic: A Reliable Metric?
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ABSTRACT:
SUBMITTER: Conway DS
PROVIDER: S-EPMC5971395 | biostudies-literature | 2018 Apr-Jun
REPOSITORIES: biostudies-literature
Publications
Patient-Reported Disease-Modifying Therapy Adherence in the Clinic: A Reliable Metric?
Conway Devon S DS Cecilia Vieira Maria M Thompson Nicolas R NR Parker Kaila N KN Meng Xiangyi X Fox Robert J RJ
Multiple sclerosis journal - experimental, translational and clinical 20180401 2
<h4>Background</h4>Adherence to multiple sclerosis (MS) disease-modifying therapy (DMT) is commonly assessed through patient reporting, but patient-reported adherence is rarely studied.<h4>Objective</h4>To determine rates of DMT adherence reported from patient to clinician, reasons for nonadherence, and relationships between adherence and outcomes.<h4>Methods</h4>We identified relapsing-remitting MS patients on DMT for ≥3 months. DMT adherence was defined as taking ≥80% of doses. Linear and logi ...[more]
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Project description:Background Patient-reported outcome metrics (PROs) quantify important outcomes in clinical trials and can be sensitive measures of patient experience in clinical practice. Currently, there is no validated disease-specific PRO for adults with congenital heart disease (ACHD). Methods and Results We conducted a preliminary psychometric validation of a novel ACHD PRO. ACHD patients were recruited prospectively from 2 institutions and completed a series of questionnaires, a physician health assessment, and a 6-minute walk test. Participants returned to complete the same questionnaires and assessment 3 months±2 weeks later. We tested the internal consistency and test-retest reliability by comparing responses among clinically stable patients at the 2 study visits. We assessed convergent and divergent validity by comparison of ACHD PRO responses to existing validated questionnaires. We assessed responsiveness by comparison with patient-reported clinical change. One hundred three patients completed 1 study visit and 81 completed both. The ACHD PRO demonstrated good internal consistency in each of its 5 domains (Cronbach's α: 0.87; 0.74; 0.74; 0.90; and 0.89, respectively) and in the overall summary score (0.92). Test-retest reliability was good with an intraclass correlation ≥0.73 for all domains and 0.78 for the Summary Score. The ACHD PRO accurately assessed domain concepts based on comparison with validated standards. Preliminary estimates of responsiveness suggest sensitivity to clinical status. Conclusions These studies provide initial support for the validity and reliability of the ACHD PRO. Further studies are needed to assess its sensitivity to changes in clinical status.
| S-EPMC7428986 | biostudies-literature
Project description:BackgroundPatient reports of their adherence behaviors, concerns about statins, and perceptions of atherosclerotic cardiovascular disease (ASCVD) risk could inform approaches for improving adherence to statin therapy. We examined these factors and their associations with adherence.MethodsWe conducted telephone interviews among a stratified random sample of adults receiving statins within an integrated delivery system (N = 730, 81% response rate) in 2010. We sampled equal numbers of individuals in three clinical risk categories: those with 1) coronary artery disease; 2) diabetes or other ASCVD diagnosis; and 3) no diabetes or ASCVD diagnoses. We assessed 15 potential concerns about and barriers to taking statins, and perceived risk of having a heart attack in the next 10 years (0-10 scale). We calculated the proportion of days covered (PDC) by statins in the last 12 months using dispensing data and used multivariate logistic regression to examine the characteristics associated with non-adherence (PDC<80%). Analyses were weighted for sampling proportions.ResultsSixty-one percent of patients with PDC<50% reported not filling a new prescription, splitting or skipping statins, or stopping refilling statins in the last 12 months vs. 15% of those with PDC≥80% (p<0.05). The most commonly reported concerns about statins were preferring to lower cholesterol with lifestyle changes (66%), disliking medications in general (59%), and liver or kidney problems (31%); having trouble remembering to take statins (9%) was the most common reason for taking less than prescribed. In multivariate analyses, clinical risk categories were not significantly associated with odds of non-adherence; however, those with higher perceived risk of heart attack were less likely to be non-adherent.ConclusionsPatient-reported medication-taking behaviors were correlated with statin PDC and those with lower perceived cardiovascular risk were less likely to be adherent. These findings highlight the importance of eliciting from and educating patients on their adherence behaviors and ASCVD risks.
| S-EPMC5805247 | biostudies-literature
Project description:BackgroundAdherence to disease-modifying therapies (DMTs) in pediatric multiple sclerosis (MS) is not well understood. We examined the prevalence and risk factors for poor adherence in pediatric MS.MethodsThis cross-sectional study recruited youth with MS from 12 North American pediatric MS clinics. In addition to pharmacy-refill data, patients and parents completed self-report measures of adherence and quality of life. Additionally, patients completed measures of self-efficacy and well-being. Factor analysis and linear regression methods were used.ResultsA total of 66 youth (mean age, 15.7 years) received MS DMTs (33% oral, 66% injectable). Estimates of poor adherence (i.e. missing >20% of doses) varied by source: pharmacy 7%, parent 14%, and patient 41%. Factor analysis yielded two composites: adherence summary and parental involvement in adherence. Regressions revealed that patients with better self-reported physical functioning were more adherent. Parents were more likely to be involved in adherence when their child had worse parent-reported PedsQL School Functioning and lower MS Self-Efficacy Control. Oral DMTs were associated with lesser parental involvement in adherence.ConclusionRates of non-adherence varied by information source. Better self-reported physical functioning was the strongest predictor of adherence. Parental involvement in adherence was associated with worse PedsQL School Functioning and lower MS Self-Efficacy-measured confidence in controlling MS.
| S-EPMC7370309 | biostudies-literature
Project description:BACKGROUND: Chronically ill children and adolescents comprise a vulnerable population that requires specific considerations in order to positively impact their treatment outcome. Pediatric renal patients can be non-compliant and also forgetful in taking their medications. OBJECTIVE: The objectives of the study were to (a) assess medication adherence and (b) to identify emotionality and variables that influence non-adherence by use of "The Child & Adolescent Adherence to Medication Questionnaire" (CAAMQ), which was constructed at Texas Tech University Health Sciences Center. METHODS: Pediatric renal patients from 10 to 21 years-of-age, taking three or more medications, for longer than a three-month period, were eligible to complete the CAAMQ. RESULTS: Thirty-four patients participated in the study. Many of the respondents had problems remembering to take their medications on weekends (P = 0.021). The majority of the patients stated that they were not bothered about having to take their medications (70.6%); and that taking pills did not interfere with their daily activities (85.3%). Open-ended questions in the CAAMQ identified patients' feelings of sadness, distress, and the importance of strong family support systems. The study participants reported that they preferred to take their medications at school, in the nurses' office or in a place where privacy was assured. The results indicated that Prednisone was the most disliked of all of the medications. Female patients were more reactive and secretive than males regarding peers knowing about their disease and medication schedules (P<0.017). CONCLUSIONS: Non-adherence in pediatric patients is a complex and serious problem, which ultimately affects the patients' health. Privacy and daily routine were found to impact the patients' adherence to medications. Creative and individualized reminders for teenagers need to be developed and validated. Further studies that take into consideration developmental and motivational factors may help researchers identify modifiable psychosocial predictors that will lead to improved medication adherence.
| S-EPMC3715481 | biostudies-other
Project description:BackgroundMaintaining high levels of adherence to antiretroviral therapy (ART) is a challenge across settings and populations. Understanding the relative importance of different barriers to adherence will help inform the targeting of different interventions and future research priorities.Methods and findingsWe searched MEDLINE via PubMed, Embase, Web of Science, and PsychINFO from 01 January 1997 to 31 March 2016 for studies reporting barriers to adherence to ART. We calculated pooled proportions of reported barriers to adherence per age group (adults, adolescents, and children). We included data from 125 studies that provided information about adherence barriers for 17,061 adults, 1,099 children, and 856 adolescents. We assessed differences according to geographical location and level of economic development. The most frequently reported individual barriers included forgetting (adults 41.4%, 95% CI 37.3%-45.4%; adolescents 63.1%, 95% CI 46.3%-80.0%; children/caregivers 29.2%, 95% CI 20.1%-38.4%), being away from home (adults 30.4%, 95% CI 25.5%-35.2%; adolescents 40.7%, 95% CI 25.7%-55.6%; children/caregivers 18.5%, 95% CI 10.3%-26.8%), and a change to daily routine (adults 28.0%, 95% CI 20.9%-35.0%; adolescents 32.4%, 95% CI 0%-75.0%; children/caregivers 26.3%, 95% CI 15.3%-37.4%). Depression was reported as a barrier to adherence by more than 15% of patients across all age categories (adults 15.5%, 95% CI 12.8%-18.3%; adolescents 25.7%, 95% CI 17.7%-33.6%; children 15.1%, 95% CI 3.9%-26.3%), while alcohol/substance misuse was commonly reported by adults (12.9%, 95% CI 9.7%-16.1%) and adolescents (28.8%, 95% CI 11.8%-45.8%). Secrecy/stigma was a commonly cited barrier to adherence, reported by more than 10% of adults and children across all regions (adults 13.6%, 95% CI 11.9%-15.3%; children/caregivers 22.3%, 95% CI 10.2%-34.5%). Among adults, feeling sick (15.9%, 95% CI 13.0%-18.8%) was a more commonly cited barrier to adherence than feeling well (9.3%, 95% CI 7.2%-11.4%). Health service-related barriers, including distance to clinic (adults 17.5%, 95% CI 13.0%-21.9%) and stock outs (adults 16.1%, 95% CI 11.7%-20.4%), were also frequently reported. Limitations of this review relate to the fact that included studies differed in approaches to assessing adherence barriers and included variable durations of follow up. Studies that report self-reported adherence will likely underestimate the frequency of non-adherence. For children, barriers were mainly reported by caregivers, which may not correspond to the most important barriers faced by children.ConclusionsPatients on ART face multiple barriers to adherence, and no single intervention will be sufficient to ensure that high levels of adherence to treatment and virological suppression are sustained. For maximum efficacy, health providers should consider a more triaged approach that first identifies patients at risk of poor adherence and then seeks to establish the support that is needed to overcome the most important barriers to adherence.
| S-EPMC5127502 | biostudies-literature
Project description:BACKGROUND: The development of practical patient-reported outcome measures (PROM) to assess the user view of health programmes is increasingly important. Valid, shorter instruments are more likely to be used and completed than extensive questionnaires. METHODS: Consecutive adult outpatient attendees who were long-term survivors of childhood cancer completed the 16-item Patient Satisfaction with Communication Questionnaire (PSCQ). These data were used to develop a three-item questionnaire. The brief PROM was validated against data from a second, independent survey conducted in a similar fashion. RESULTS: In all, 93 individuals contributed PSCQ data, a response rate of 63%. The brief PROM was highly correlated with the original PSCQ in derivation (ρ=0.87, P<0.001) and validation (ρ=0.82, P<0.001) data sets. Using a cutoff of scores <9 to indicate dissatisfaction showed fair discrimination in derivation (sensitivity 85%, specificity 80%) and validation data sets (sensitivity 75%, specificity 78%). CONCLUSION: It is possible to quickly and efficiently assess satisfaction with follow-up clinics with three questions. This brief PROM could prove useful in monitoring services quality by allowing clinic users to provide timely feedback on their care.
| S-EPMC2990574 | biostudies-other
Project description:BackgroundAdherence to antiretroviral therapy (ART) remains problematic. Regular monitoring of its barriers is clinically recommended, however, patient-provider communication around adherence is often inadequate. Our team thus decided to develop a new electronically administered patient-reported outcome measure (PROM) of barriers to ART adherence (the I-Score) to systematically capture this data for physician consideration in routine HIV care. To prepare for a controlled definitive trial to test the I-Score intervention, a pilot study was designed. Its primary objectives are to evaluate patient and physician perceptions of the I-Score intervention and its implementation strategy.MethodsThis one-arm, 6-month study will adopt a mixed method type 3 implementation-effectiveness hybrid design and be conducted at the Chronic Viral Illness Service of the McGill University Health Centre (Montreal, Canada). Four HIV physicians and 32 of their HIV patients with known or suspected adherence problems will participate. The intervention will involve having patients complete the I-Score through a smartphone application (Opal), before meeting with their physician. Both patients and physicians will have access to the I-Score results, for consideration during the clinic visits at Times 1, 2 (3 months), and 3 (6 months). The implementation strategy will focus on stakeholder involvement, education, and training; promoting the intervention's adaptability; and hiring an Application Manager to facilitate implementation. Implementation, patient, and service outcomes will be collected (Times 1-2-3). The primary outcome is the intervention's acceptability to patients and physicians. Qualitative data obtained, in part, through physician focus groups (Times 2-3) and patient interviews (Times 2-3) will help evaluate the implementation strategy and inform any methodological adaptations.DiscussionThis study will help plan a definitive trial to test the efficacy of the I-Score intervention. It will generate needed data on electronic PROM interventions in routine HIV care that will help improve understanding of conditions for their successful implementation.Clinical trial registrationClinicalTrials.gov identifier: NCT04702412; https://clinicaltrials.gov/.
| S-EPMC8717992 | biostudies-literature
Project description:Many effective medical therapies are available for treating neurological diseases, but these therapies tend to be expensive and adherence is critical to their effectiveness. We used patient-reported data to examine the frequency and determinants of financial barriers to medication adherence among individuals treated for neurological disorders.Patients completed cross-sectional surveys on iPads as part of routine outpatient care in a neurology clinic. Survey responses from a 3-month period were collected and merged with administrative sources of demographic and clinical information (eg, insurance type). We explored the association between patient characteristics and patient-reported failure to refill prescription medication due to cost in the previous 12 months, termed here as "nonadherence".The population studied comprised 6075 adults who were presented between July and September 2015 for outpatient neurology appointments. The mean age of participants was 56 (standard deviation: 18) years, and 1613 (54%) were females. The patients who participated in the surveys (2992, 49%) were comparable to nonparticipants with respect to gender and ethnicity but more often identified English as their preferred language (94% vs 6%, p<0.01). Among respondents, 9.8% (n=265) reported nonadherence that varied by condition. These patients were more frequently Hispanic (16.7% vs 9.8% white, p=0.01), living alone (13.9% vs 8.9% cohabitating, p<0.01), and preferred a language other than English (15.3% vs 9.4%, p=0.02).Overall, the magnitude of financial barriers to medication adherence appears to vary across neurological conditions and demographic characteristics.
| S-EPMC5117903 | biostudies-other
Project description:BackgroundThe prevention of thromboembolism events remains challenging in cases of poor medication adherence. Unfortunately, clinical prediction of future adherence has been suboptimal. The objective of this study was to examine the correlation between 2 measures of real-time, self-reported adherence and anticoagulation control.MethodsThe IN-RANGE2 cohort recruited patients initiating warfarin therapy in 3 urban anticoagulation clinics. At each study visit, participants reported adherence using a 100-point visual analogue scale (VAS, marking percentage of pills taken since prior visit on a linear scale) and 7-day recall of pill-taking behavior. Anticoagulation control was measured by between-visit percent time in international normalized ratio range (BVTR), dichotomized at the cohort median. The longitudinal association between adherence and anticoagulation control was estimated using generalized estimating equations, controlling for clinical and demographic characteristics, prior BVTR, and warfarin dose changes.ResultsAmong 598 participants with 3204 (median 4) visits, the median BVTR was 36.8% (interquartile range 0%-73.9%). Participants reported ≤80% adherence in 182 visits (5.7%) and missed pills in the past 7 days in 377 visits (11.8%). Multivariable regression analysis found poorer anticoagulation control (BVTR <36.8%) in those with a VAS ≤80% (odds ratio 1.89; 95% confidence interval, 1.12-3.18; P = .02) and self-reported change in adherence since last visit (odds ratio 1.55; 95% confidence interval, 1.20-2.01; P = .001).ConclusionSelf-reported VAS medication adherence at a clinic visit and changes in reported adherence since the last visit are independently associated with BVTR. Clinicians may gain additional insight into patients' medication adherence by incorporating this information into patient management.
| S-EPMC5572106 | biostudies-literature
Project description:Purpose:This study tried to establish a metric framework of patient adherence to doctor's advice based on the expected utility and prospect theories, and it explained why the key to patient adherence to doctor's advice is patients' perceptions. Methods:Our framework is primarily based on two mature theories: expected utility theory and prospect theory. We started with a basic assumption: the doctor is rational and cares for patient's health utility. We analyzed the expected utility of therapy with a definite diagnosis. Then, we considered the impacts of the accuracy of diagnostic techniques. After that, we explored the patient's response to the doctors' advices based on behavioral economics. In addition, we launched a discrete choice experiment to test our main point: perception is the key to patients' adherence. A total of 200 undergraduate students participated in the discrete choice experiment. Results:Three main factors might impact a rational clinical decision: the therapeutic and side effects of the treatment, patient's true disease risk, and diagnostic accuracy. However, another factor, patient's individual percepion, was crucial for patient's adherence since it may bias the patient's estimations regarding the above three factors. As a result, doctors and patients would have a cognitive gap in the estimation of the disease and the treatment. Conclusion:The results indicate that without the necessary information, better clinical techniques may not help to improve patient adherence, which support our theoretical reasoning forcefully. Therefore, improving patient adherence should be more of a process of empathy and communication rather than a promotion of medical technology.
| S-EPMC7049270 | biostudies-literature