scholarly journals Combining patient reported outcomes and EHR data to understand population level treatment needs: correcting for selection bias in the migraine signature study

2021 ◽  
Vol 5 (1) ◽  
Author(s):  
Walter F. Stewart ◽  
Xiaowei Yan ◽  
Alice Pressman ◽  
Alice Jacobson ◽  
Shruti Vaidya ◽  
...  

Abstract Background Electronic health records (EHR) data can be used to understand population level quality of care especially when supplemented with patient reported data. However, survey non-response can result in biased population estimates. As a case study, we demonstrate that EHR and survey data can be combined to estimate primary care population prescription treatment status for migraine stratified by migraine disability, without and with adjustment for survey non-response bias. We selected disability as it is associated with survey participation and patterns of prescribing for migraine. Methods A stratified random sample of Sutter Health adult primary care (PC) patients completed a digital survey about headache, migraine, and migraine related disability. The survey data from respondents with migraine were combined with their EHR data to estimate the proportion who had prescription orders for acute or preventive migraine treatments. Separate proportions were also estimated for those with mild disability (denoted “mild migraine”) versus moderate to severe disability (denoted mod-severe migraine) without and with correction, using the inverse propensity weighting method, for non-response bias. We hypothesized that correction for non-response bias would result in smaller differences in proportions who had a treatment order by migraine disability status. Results The response rate among 28,268 patients was 8.2%. Among survey respondents, 37.2% had an acute treatment order and 16.8% had a preventive treatment order. The response bias corrected proportions were 26.2% and 11.6%, respectively, and these estimates did not differ from the total source population estimates (i.e., 26.4% for acute treatments, 12.0% for preventive treatments), validating the correction method. Acute treatment orders proportions were 32.3% for mild migraine versus 37.3% for mod-severe migraine and preventive treatment order proportions were 12.0% for mild migraine and 17.7% for mod-severe migraine. The response bias corrected proportions for acute treatments were 24.8% for mild migraine and 26.6% for mod-severe migraine and the proportions for preventive treatment were 8.1% for mild migraine and 12.0% for mod-severe migraine. Conclusions In this study, we combined survey data with EHR data to better understand treatment needs among patients diagnosed with migraine. Migraine-related disability is directly related to preventive treatment orders but less so for acute treatments. Estimates of treatment status by self-reported disability status were substantially over-estimated among those with moderate to severe migraine-related disability without correction for non-response bias.

Author(s):  
Vandana Menon ◽  
Caroline Huber ◽  
Alexandria Portelli ◽  
Marissa Baker-Wagner ◽  
Scott Kelley ◽  
...  

ObjectivesKnee osteoarthritis (OA) is a leading cause of health-related disability. In the absence of curative non-operative therapies, treatment goals are limited to symptom relief. Data are limited on how patients and physicians prioritise available treatment options. We assessed patients’ preferences for and physicians’ attitudes towards intra-articular treatments including corticosteroids (IACS), an extended-release corticosteroid (TA-ER) and hyaluronic acids (IAHA).MethodsWe conducted a prospective, IRB-exempt, double-blind survey of patients with and providers who treat knee OA. Respondents were required to have received or prescribed TA-ER in a non-trial setting. We evaluated patients’ OA history, impact of knee OA and treatment preferences, and physicians’ decision-making and prescribing experiences.ResultsOf the 97 patient participants, mean age was 56 years, 70.0% were women, 75.0% had bilateral knee OA and 46.4% were diagnosed over 5 years ago. Of the 50 physician participants, 34.0% were rheumatologists, 42.0% were orthopaedic surgeons and 60.0%, on average, treat 50+ patients with knee OA per month. Treatment selection factors considered ‘very important’ to patients and physicians included disease severity (88.7%, 82.0%), impact on quality of life (88.7%, 72.0%), disease extent (84.5%, 54.0%) and activity level (80.4%, 64.0%). A majority (93.8%) of patients indicated moderate to severe difficulty with their knees. Fewer patients (76.3%) reported shared decision making compared with physicians (92.0%). Half (50.5%) of the patients reported that they experienced months of pain relief with TA-ER, 27.7% with IACS and 18.8% with IAHA. Physician assessments were consistent but estimated a greater duration of treatment effects than that reported by patients across all therapies.ConclusionWhile knee OA has a tremendous impact on patients, there are significant unmet treatment needs. The increasing use of patient-reported outcomes will allow patients and physicians to track pain and functional status over time and across therapies, improving shared decision-making.


Cephalalgia ◽  
2014 ◽  
Vol 35 (11) ◽  
pp. 959-968 ◽  
Author(s):  
Esma Dilli ◽  
Rashmi Halker ◽  
Bert Vargas ◽  
Joseph Hentz ◽  
Teresa Radam ◽  
...  

Background Occipital nerve (ON) injections with corticosteroids and/or local anesthetics have been employed for the acute and preventive treatment of migraine for decades. However, to date there is no randomized, placebo-controlled evidence to support the use of occipital nerve block (ONB) for the prevention of migraine. Objective The objective of this article is to determine the efficacy of ONB with local anesthetic and corticosteroid for the preventive treatment of migraine. Participants and methods Patients between 18 and 75 years old with ICHD-II-defined episodic (> 1 attack per week) or chronic migraine (modified ICHD-II as patients with > 10 days with consumption of acute medications were permitted into the study) were randomized to receive either 2.5 ml 0.5% bupivacaine plus 0.5 ml (20 mg) methylprednisolone over the ipsilateral (unilateral headache) or bilateral (bilateral headache) ON or 2.75 ml normal saline plus 0.25 ml 1% lidocaine without epinephrine (placebo). Patients completed a one-month headache diary prior to and after the double-blind injection. The primary outcome measure was defined as a 50% or greater reduction in the frequency of days with moderate or severe migraine headache in the four-week post-injection compared to the four-week pre-injection baseline period. Results Thirty-four patients received active and 35 patients received placebo treatment. Because of missing data, the full analysis of 33 patients in the active and 30 patients in the placebo group was analyzed for efficacy. In the active and placebo groups respectively, the mean frequency of at least moderate (mean 9.8 versus 9.5) and severe (3.6 versus 4.3) migraine days and acute medication days (7.9 versus 10.0) were not substantially different at baseline. The percentage of patients with at least a 50% reduction in the frequency of moderate or severe headache days was 30% for both groups (10/30 vs nine of 30, Δ 0.00, 95% CI –0.22 to 0.23). Conclusions Greater ONB does not reduce the frequency of moderate to severe migraine days in patients with episodic or chronic migraine compared to placebo. The study was registered with ClinicalTrial.gov (NCT00915473).


Author(s):  
Michela Luciana Luisa Zini ◽  
Giuseppe Banfi

There is a growing interest in the collection and use of patient reported outcomes because they not only provide clinicians with crucial information, but can also be used for economic evaluation and enable public health decisions. During the collection phase of PROMs, there are several factors that can potentially bias the analysis of PROM data. It is crucial that the collected data are reliable and comparable. The aim of this paper was to analyze the type of bias that have already been taken into consideration in the literature. A literature review was conducted by the authors searching on PubMed database, after the selection process, 24 studies were included in this review, mostly regarding orthopedics. Seven types of bias were identified: Non-response bias, collection method related bias, fatigue bias, timing bias, language bias, proxy response bias, and recall bias. Regarding fatigue bias and timing bias, only one study was found; for non-response bias, collection mode related bias, and recall bias, no agreement was found between studies. For these reasons, further research on this subject is needed in order to assess each bias type in relation to each medical specialty, and therefore find correction methods for reliable and comparable data for analysis.


2018 ◽  
Vol 54 (3) ◽  
pp. 181-187
Author(s):  
Danielle R Hairston ◽  
Ralph H de Similien ◽  
Seth Himelhoch ◽  
Anique Forrester

Implantable cardioverter-defibrillators have become standard preventive treatment for patients with ventricular arrhythmias and other life-threatening cardiac conditions. The advantages and efficiency of the device are supported by multiple clinical trials and outcome studies, leading to its popularity among cardiologists. Implantation of the device is not without adverse outcomes. Implantable cardioverter-defibrillator placement has been found to lead to negative psychological and psychosocial sequelae such as apprehension to engage in physical activity, chronic anxiety, decreased physical and social functioning, a nagging fear of being shocked by the device, and the development of “phantom shocks.” Defined as patient-reported shocks in the absence of evidence that the implantable cardioverter-defibrillator device has discharged, phantom shocks could impact the mental health of those affected. This article reviews the case of Mr. L, a 47-year-old man with ischemic cardiomyopathy who was seen by the psychiatry consultation team while under cardiologic care because he reported that his implantable cardioverter-defibrillator device had been shocking him despite no objective evidence after interrogating the device. A literature review of phantom shocks, their associated symptomatology, and psychological consequences are outlined and discussed.


2020 ◽  
Vol 10 (2) ◽  
pp. 53-56
Author(s):  
H. D. Shewade ◽  
V. Gupta ◽  
S. Satyanarayana ◽  
S. S. Chadha ◽  
S. Pandurangan ◽  
...  

Among new smear-positive pulmonary tuberculosis (TB) patients aged 15 years from marginalised populations in India, one in four had a history of a household member with TB and one in 10 had a TB-related death in the household. This contribution of household transmission to overall TB transmission provides evidence for a potential population-level benefit of TB preventive treatment for all household contacts (without active TB). Females with TB had a significantly higher household TB exposure than males. Targeted TB preventive treatment (if implemented in a phased manner) among female household contacts may be explored after considering other factors.


2020 ◽  
Vol 26 (3) ◽  
pp. 343-353 ◽  
Author(s):  
Christy K Sheehy ◽  
Ethan S Bensinger ◽  
Andrew Romeo ◽  
Lakshmisahithi Rani ◽  
Natalie Stepien-Bernabe ◽  
...  

Background: Objective tools for prognosis and disease progression monitoring in multiple sclerosis (MS) are lacking. The visuomotor system could be used to track motor dysfunction at the micron scale through the monitoring of fixational microsaccades. Aims: The aim of this study was to evaluate whether microsaccades are correlated with standard MS disability metrics and to assess whether these methods play a predictive role in MS disability. Method: We used a custom-built retinal eye tracker, the tracking scanning laser ophthalmoscope (TSLO), to record fixation in 111 participants with MS and 100 unaffected controls. Results: In MS participants, a greater number of microsaccades showed significant association with higher Expanded Disability Status Scale score (EDSS, p < 0.001), nine-hole peg test (non-dominant: p = 0.006), Symbol Digit Modalities Test (SMDT, p = 0.014), and Functional Systems Scores (FSS) including brainstem ( p = 0.005), cerebellar ( p = 0.011), and pyramidal ( p = 0.009). Both brainstem FSS and patient-reported fatigue showed significant associations with microsaccade number, amplitude, and peak acceleration. Participants with MS showed a statistically different average number ( p = 0.020), peak vertical acceleration ( p = 0.003), and vertical amplitude ( p < 0.001) versus controls. Logistic regression models for MS disability were created using TSLO microsaccade metrics and paraclinical tests with ⩾80% accuracy. Conclusion: Microsaccades provide objective measurements of MS disability level and disease worsening.


2020 ◽  
Vol 6 (1) ◽  
pp. 205521732090172 ◽  
Author(s):  
Richard S Nicholas ◽  
Martin L Heaven ◽  
Rodden M Middleton ◽  
Manoj Chevli ◽  
Ruth Pulikottil-Jacob ◽  
...  

Objectives To investigate through survey and data linkage, healthcare resource use and costs (except drugs), including who bears the cost, of multiple sclerosis in the United Kingdom by disease severity and type. Methods The United Kingdom Multiple Sclerosis Register deployed a cost of illness survey, completed by people with multiple sclerosis and linked this with data within the United Kingdom Multiple Sclerosis Register and from their hospital records. Resource consumption was categorised as being medical or non-medical and costed by National Health Service and social services estimates for 2018. Results We calculated £509,003 in non-medical costs over a year and £435,488 in medical costs generated over 3 months. People with multiple sclerosis reported self-funding 75% of non-medical costs with non-medical interventions having long-term potential benefits. Costs increased with disability as measured by patient-reported Expanded Disability Status Score and Multiple Sclerosis Impact Scale, with Multiple Sclerosis Impact Scale physical being a more powerful predictor of costs than the patient-reported Expanded Disability Status Score. Two distinct groups were identified: medical and non-medical interventions ( n = 138); and medical interventions only ( n = 399). The medical and non-medical group reported increased disease severity and reduced employment but incurred 80% more medical costs per person than the medical-only group. Conclusions The importance of disability in driving costs is illustrated with balance between medical and non-medical costs consistent with the United Kingdom health environment. People with multiple sclerosis and their families fund a considerable proportion of non-medical costs but non-medical interventions with longer term impact could affect future medical costs.


2020 ◽  
Vol 17 (4) ◽  
pp. 443-455 ◽  
Author(s):  
Samantha M. Ross ◽  
Ellen Smit ◽  
Joonkoo Yun ◽  
Kathleen Bogart ◽  
Bridget Hatfield ◽  
...  

Background: Children and adolescents with disabilities often report low levels of physical activity (PA). Estimating the magnitude of PA disparities has been previously challenged by underreporting and variability in subsampling of disability. Using the National Survey of Children’s Health, this study estimated the population-level PA disparities experienced and the association between disability status and PA engagement. Methods: Weighted prevalence of PA engagement (National Physical Activity Guidelines for Americans (2nd edition) and sports participation) was compared across disability groups for children (n = 20,867, 6–11 y) and adolescents (n = 28,651, 12–17 y) and found to be 12%. Age-stratified multivariable logistic regressions estimated the likelihood of PA engagement as a function of disability status and type, after adjusting for child and household factors. Results: Children, but not adolescents, with disabilities had significantly lower odds of being sufficiently active compared with peers without disabilities (adjusted odds ratio = 0.75; 95% confidence interval, 0.60–0.94). Across age groups, the lowest prevalence rates were observed among those experiencing function and mobility disabilities. Children and adolescents were significantly less likely to participate in sports compared with peers. Conclusion: Children with function and mobility disabilities were identified as priority subpopulations least likely to be sufficiently active. The disparity in sports participation highlights a critical intervention point for increasing PA among children with disabilities.


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