Abstract
Aims:
Obstructive hypertrophic cardiomyopathy (oHCM) is associated with substantial disease burden, healthcare resource utilization (HCRU), and healthcare costs. This study assessed HCRU and healthcare costs among patients with oHCM treated in real-world settings over 5 years of follow-up.
Methods:
This retrospective cohort study used the Optum database (January 2013–December 2021) and included patients aged ≥18 years with ≥2 claims for oHCM and continuous health plan enrollment for ≥6 months pre-initial and post-initial oHCM claim (index date). Patients with ≥5 years of follow-up data were analyzed. All-cause and HCM-related HCRU (ambulatory visits [physician office visits and outpatient visits], emergency room [ER] visits, hospital admissions, length of stay [LOS], and pharmacy use) and healthcare costs were assessed in US dollars.
Results:
In total, 5,129 patients with oHCM were identified: 5,056 (98.6%) had an all-cause ambulatory visit and 4,669 (91.0%) had an HCM-related visit. 4,079 (79.5%) had an all-cause ER visit, and 1,499 (29.2%) an HCM-related ER visit. 2,949 (57.5%) reported an all-cause admission, and 2,232 (43.5%) an HCM-related admission. The mean (SD) per-person count of all-cause ambulatory visits was 101.0 (90.7) and 15.3 (18.7) for HCM-related ambulatory visits. Mean (SD) all-cause admissions per patient were 1.8 (3.8), and 0.9 (1.6) were HCM related. Mean (SD) all-cause LOS was 18.0 (54.7) days, and HCM-related LOS was 10.0 (39.6) days. Mean (SD) all-cause healthcare cost per patient was $181,968 (241,608), of which $67,531 (114,705) was HCM related. Hospital admissions were the largest proportion of medical costs: all-cause admissions cost $71,001 (149,533) during follow-up, of which $44,781 (99,431) was HCM-related.
Limitations:
Analyses were unadjusted for covariates or confounding factors.
Conclusion:
Patients with oHCM experience substantial HCRU and costs over 5 years of follow-up. These results indicate a need for new treatment options which could decrease HCRU and improve patient outcomes.
Keywords: Obstructive hypertrophic cardiomyopathy, healthcare resource utilization, healthcare costs, economic burden, real-world population, economic study
JEL CLASSIFICATION CODES: I13, I14
GRAPHICAL ABSTRACT

PLAIN LANGUAGE SUMMARY
Previous studies have looked at healthcare needs (or healthcare resource use; HCRU) and costs of treating people with obstructive hypertrophic cardiomyopathy (oHCM). But those studies only looked at HCRU and costs over 3 years or less. In this study, we looked at healthcare needs and costs over 5 years using data from healthcare claims in the United States. We found that people with oHCM had high HCRU, with 9 out of 10 having a healthcare visit related to their disease, and 4 out of 10 a hospital admission related to their disease. People with oHCM also had high healthcare costs, with average healthcare costs related to their disease of $67,531 over the 5 year study; which is over $13,500 per person each year. These findings show that there is a need to reduce HCRU for people with oHCM, and that this would also reduce their healthcare costs. New treatments for people with oHCM could decrease HCRU while also improving people’s health.
Introduction
Hypertrophic cardiomyopathy (HCM) is a chronic genetic heart disease characterized by hypertrophy of the left ventricle. A cohort study of a US healthcare claims database and a study of 5.5 million patients in Germany have provided prevalence estimates for clinically diagnosed HCM to be 1 in 3,000 persons1,2; however, the estimated prevalence is at least 1 in 500 persons3, highlighting a significant diagnostic gap. About two-thirds of patients with HCM are diagnosed with obstructive HCM (oHCM) characterized by left ventricular outflow tract obstruction. The remaining patients with HCM are diagnosed as having nonobstructive HCM (nHCM)4,5. Because of an increase in nHCM diagnoses, between 2013 and 2019 the estimated overall prevalence of HCM in the United States increased by over 50% to around 260,000 patients6.
Standard-of-care, guideline recommended, pharmaceutical treatments for oHCM include non-vasodilating beta-blockers (BB) and non-dihydropyridine calcium channel blockers (CCB)3. These treatments are intended to relieve symptoms but do not address the cause of oHCM. Patients also may not experience optimal symptomatic relief with medical therapy and may require invasive treatments, such as septal reduction therapy (SRT, alcohol septal ablation and/or septal myectomy)3,7, to alleviate symptoms. Patients with oHCM experience disease progression despite receiving invasive treatments, resulting in adverse clinical outcomes, including atrial fibrillation, heart failure, and mortality8.
Previous claims-based economic studies of healthcare resource utilization (HCRU) and healthcare costs among US patients have demonstrated that diagnosis with oHCM is associated with significant increases in both HCRU and healthcare costs versus pre-diagnosis and that patients with oHCM experience greater HCRU and healthcare costs than matched controls4,9–12. However, the previous studies did not investigate HCRU and healthcare costs beyond 3 years of follow-up. The objective of this study was to establish HCRU and healthcare costs in patients with oHCM over longer-term follow-up using US administrative claims data.
Methods
Study design and data source
This was a retrospective observational, non-interventional cohort study using data from the Optum® Market Clarity Integrated Clinical and Claims database of US administrative and electronic health record (EHR) claims data. Treatment patterns, HCRU, and healthcare costs for patients with oHCM were assessed from medical and pharmacy claims data.
Cohort identification
Patients ≥18 years of age with ≥2 medical claims with a diagnosis code for HCM (International Classification of Diseases, Ninth Revision [ICD-9]: 425.1, 425.11, or 425.18; ICD-10: I42.1 or I42.2) in any position at least 30 days apart and on different dates from 1 January 2013, through 31 December 2021 (patient identification period) were eligible (Figure 1). Patients were also required to be classified as having oHCM. However, it is not possible to determine if a patient with an ICD diagnosis code for HCM has oHCM or nHCM based on ICD codes alone. To overcome this limitation, diagnosis of oHCM was determined based on patient claims data with the presence of ≥1 medical or pharmacy claim for standard-of-care oHCM therapies including BB, CCB, or disopyramide anytime during the 6-month baseline period prior to their index date (Supplementary Table S1), or ≥1 medical claim or EHR record for SRT during the study period (Supplementary Table S2) used as a proxy for oHCM diagnosis. All remaining patients with HCM were classified as having nHCM and excluded. The index date was defined as the date of first oHCM claim. Patients were required to have continuous enrollment with medical and pharmacy benefits for ≥6 months before and ≥6 months after this date. Patients with ≥5 years of follow-up data after their index date were included in this analysis and their follow-up period was censored 5 years after their index date.
Figure 1.

Observation period schematic.
Baseline characteristics
Baseline demographic characteristics captured from administrative claims data on patient index date included patient sex, age, race/ethnicity, payor type, and US geographical region. Patient clinical characteristics including their diagnosing provider specialty, comorbidities, and Charlson Comorbidity index were assessed during the 6-month baseline period prior to their index date. Patients with missing data on their sex or age and/or an unknown geographical region and patients with a claim for Fabry disease or amyloidosis during the study period were excluded.
Study outcomes
All-cause and HCM-related HCRU were assessed over the 5-year follow-up period. All-cause HCRU included all ambulatory visits (physician office and hospital outpatient visits), emergency room (ER) visits, and hospital admissions including associated length of stay (LOS) and pharmacy use. HCRU was defined as HCM related if the claimant had a diagnosis of HCM or if the claim was for a standard-of-care HCM treatment (BB, CCB, disopyramide, SRT, implantable cardioverter-defibrillator [ICD] implantation, pacemaker implantation, or heart transplantation)3.
Also, all-cause and HCM-related healthcare costs were assessed over the 5-year follow-up period. All-cause healthcare costs were calculated by combining patient paid and health plan amounts. Total costs were grouped and presented as medical costs and pharmacy costs. Medical costs included physician office and hospital outpatient costs, ER costs, inpatient costs, and other medical costs. Healthcare costs were determined to be HCM related if the patient had a diagnosis code for HCM in any position or if claims were for a defined HCM treatment (BB, CCB, disopyramide, SRT, ICD implantation, pacemaker implantation, or heart transplantation).
Costs data were adjusted using the annual medical care component of the Consumer Price Index (CPI) to reflect healthcare cost inflation between the date of the claim and the most recent year for which CPI information was available at the time of data analysis (2022; index value = 546.5535)13.
Statistical analysis
Patient demographic and clinical characteristics at baseline were summarized and described by sociodemographic groups (sex, race, age, payor, and geographical region) using descriptive statistics. Means, standard deviations (SDs), and interquartile ranges (IQRs) were used to summarize continuous variables, and n (%) was used to present categorical variables. HCRU data are presented as total healthcare usage over the 5-year follow-up period. Healthcare costs data are presented as total costs in US dollars (USD) over the 5-year follow-up period and as estimated costs over 1 year.
Results
Patient baseline characteristics
In total, 5,129 patients with oHCM were identified in the Optum database and formed the analysis population (Figure 2). Approximately half of patients were female (2,639, 51.5%) and the majority were White (3,978, 77.6%). Most patients (2,055, 40.1%) were enrolled in Medicare, and most lived in the Midwest (2,084, 40.6%) or Northeast (1,524, 29.7%). The mean (SD) Charlson Comorbidity index was 1.5 (1.9). The most common comorbidities were hypertension (3,232, 63.0%), coronary artery disease (1,367, 26.7%), and type 2 diabetes (1,251, 24.4%). The majority of patients were diagnosed with oHCM by a cardiologist (2,802, 54.6%). Patient demographic and clinical characteristics are summarized in Table 1.
Figure 2.

Patient identification and attrition.
Abbreviations: BB, beta-blockers; CCB, calcium channel blockers; EHR, electronic health record; HCM, hypertrophic cardiomyopathy; ICD, International Classification of Diseases; oHCM, obstructive hypertrophic cardiomyopathy; SRT, septal reduction therapy.
a ICD-9: 425.1, 425.11 or 425.18; ICD-10: I42.1 or I42.2.
b Index date defined as date of first oHCM claim.
c ≥1 medical or pharmacy claim for BB, CCB, or disopyramide any time during the follow-up period or ≥1 medical claim or EHR record for SRT (alcohol septal ablation and septal myectomy) during the study period.
Table 1.
Baseline demographic and clinical characteristics.
| Characteristic | Total (N = 5,129) | |
|---|---|---|
| Age, mean (SD), years | 63.9 (14.3) | |
| Sex, n (%) | Female | 2,639 (51.5) |
| Male | 2,490 (48.5) | |
| Race/ethnicity, n (%) | White, non-Hispanic | 3,978 (77.6) |
| Black/African American, non-Hispanic | 889 (17.3) | |
| Asian, non-Hispanic | 96 (1.9) | |
| Hispanic | 166 (3.2) | |
| Payor type, n (%) | Commercial | 1,887 (36.8) |
| Medicare | 2,055 (40.1) | |
| Medicaid | 327 (6.4) | |
| Other | 28 (0.5) | |
| Unknown/missing | 832 (16.2) | |
| US geographical region, n (%) | Northeast | 1,524 (29.7) |
| Midwest | 2,084 (40.6) | |
| South | 1,107 (21.6) | |
| West | 414 (8.1) | |
| CCI score, mean (SD) | 1.5 (1.9) | |
| Baseline comorbidities, n (%) | Coronary artery disease | 1,367 (26.7) |
| Hypothyroidism | 655 (12.8) | |
| Heart failure | 941 (18.4) | |
| Hypertension | 3,232 (63.0) | |
| Type 2 diabetes | 1,251 (24.4) | |
| Obesity | 690 (13.5) | |
| Diagnosing provider specialty, n (%) | Cardiologist | 2,802 (54.6) |
| Cardiovascular surgery | 25 (0.5) | |
| Primary care physician | 570 (11.1) | |
| General practice | 264 (5.2) | |
| Others | 1,031 (20.1) |
Abbreviation: CCI, Charlson Comorbidity Index.
HCRU
Overall, 5,056 (98.6%) patients had an all-cause ambulatory visit during follow-up, and 4,669 (91.0%) had an HCM-related ambulatory visit (Table 2). The mean (SD) per-person count of all-cause ambulatory visits per patient was 101.0 (90.7), and the mean per-person count of HCM-related ambulatory visits was 15.3 (18.7) during follow-up (Table 2). In total, 4,079 (79.5%) patients had an all-cause ER visit during follow-up, and 1,499 (29.2%) had an HCM-related ER visit. The mean (SD) per-person count of all-cause ER visits was 6.0 (16.2), and the mean count of HCM-related ER visits was 0.8 (3.2).
Table 2.
Total all-cause and HCM-related HCRU during 5-year follow-up.
| All-cause HCRU |
HCM-related HCRU |
|||
|---|---|---|---|---|
| n (%) | Mean (SD) | n (%) | Mean (SD) | |
| Ambulatory visit | 5,056 (98.6) | 101.0 (90.7) | 4,669 (91.0) | 15.3 (18.7) |
| Office visit | 4,956 (96.6) | 63.6 (58.4) | 4,183 (81.6) | 9.2 (10.9) |
| Outpatient visit | 4,855 (94.6) | 38.5 (62.7) | 3,315 (64.6) | 6.3 (13.1) |
| ER visit | 4,079 (79.5) | 6.0 (16.2) | 1,499 (29.2) | 0.8 (3.2) |
| Hospital admission | 2,949 (57.5) | 1.8 (3.8) | 2,232 (43.5) | 0.9 (1.6) |
| LOS, days | NA | 18.0 (54.7) | NA | 10.0 (39.6) |
| Pharmacy use | 5,029 (98.1) | 178.5 (169.4) | 4,917 (95.9) | 27.7 (24.2) |
Abbreviations: ER, emergency room; HCM, hypertrophic cardiomyopathy; HCRU, healthcare resource utilization; LOS, length of stay; NA, not applicable.
Most patients had an all-cause admission, with 2,949 (57.5%) being admitted during follow-up, and 2,232 (43.5%) had an HCM-related admission. Overall, patients had a mean (SD) of 1.8 (3.8) all-cause admissions per patient during follow-up and a mean of 0.9 (1.6) HCM-related admissions. The mean LOS (SD) following admission was 18.0 (54.7) days for all-cause admissions and 10.0 (39.6) days for HCM-related admissions.
Nearly all patients reported pharmacy use, with 5,029 (98.1%) patients reporting an all-cause pharmacy visit during follow-up, and 4,917 (95.9%) reporting an HCM-related pharmacy visit. Patients reported a mean (SD) of 178.5 (169.4) all-cause pharmacy visits, of which only 27.7 (24.2) were HCM-related.
Healthcare costs
Patients reported a mean (SD) all-cause healthcare cost of $181,968 ($241,608) during follow-up, of which $67,531 ($114,705) was HCM-related (Figure 3). This equates to a mean all-cause healthcare cost of approximately $36,000 per year, of which $13,500 was HCM-related. The median (IQR) all-cause healthcare cost was $113,457 ($47,607–$227,538), of which $19,852 ($3,424–$89,429) was HCM-related. Medical costs made up the biggest share of total costs, with patients reporting a mean (SD) all-cause medical cost of $160,585 ($229,024) during follow-up, of which $66,309 ($114,691) was HCM related. The median (IQR) all-cause medical cost was $96,621 ($35,685–$202,004), of which $17,980 ($2,485–$87,884) was HCM-related. Hospital admissions made up the biggest proportion of medical costs, with patients reporting a mean (SD) all-cause admission cost of $71,001 ($149,533) during follow-up, of which $44,781 ($99,431) was HCM-related. The median (IQR) all-cause admission cost was $16,221 ($0–$85,037), of which $0 ($0–$48,888) was HCM related.
Figure 3.

Total all-cause and HCM-related healthcare costs over 5-year follow-up.a
Abbreviations: CPI, Consumer Price Index; ER, emergency room; HCM, hypertrophic cardiomyopathy; USD, United States dollars.
a All costs adjusted using 2022 CPI data.
Ambulatory visit costs made up the second biggest proportion of medical costs, with a mean (SD) all-cause ambulatory visit cost of $50,002 ($85,136) during follow-up, of which $13,324 ($30,743) was HCM-related. The median (IQR) all-cause ambulatory visit cost was $26,482 ($11,376–$58,710), of which $2,739 ($625–$9,866) was HCM related. Data on mean all-cause and HCM-related healthcare costs for ambulatory visits by office and outpatient visits are presented in Table 3.
Table 3.
Total all-cause and HCM-related healthcare costs during the 5-year follow-up period in USD.a
| HCRU category | All cause | HCM-related |
|---|---|---|
| Total (medical + pharmacy) costs, mean (SD) | $181,968 ($241,608) | $67,531 ($114,705) |
| Medical costs, mean (SD) | $160,585 ($229,024) | $66,309 ($114,691) |
| Ambulatory visits, mean (SD) | $50,002 ($85,136) | $13,324 ($30,743) |
| Office visits, mean (SD) | $13,953 ($23,661) | $1,735 ($2,253) |
| Outpatient visits, mean (SD) | $36,049 ($79,098) | $11,589 ($29,925) |
| Emergency room visits, mean (SD) | $7,769 ($20,516) | $948 ($4,708) |
| Inpatient admits, mean (SD) | $71,001 ($149,533) | $44,781 ($99,431) |
| Pharmacy costs, mean (SD) | $21,383 ($53,165) | $1,222 ($3,127) |
| Other medical costs, mean (SD) | $31,813 ($67,145) | $7,258 ($21,716) |
Abbreviations: CPI, consumer price index; HCM, hypertrophic cardiomyopathy; HCRU, healthcare resource utilization; USD, United States dollars.
All costs adjusted using 2022 CPI data.
ER visits made up a small proportion of total healthcare costs, with patients reporting a mean (SD) all-cause ER visit cost of $7,769 ($20,516) during follow-up, of which $948 ($4,708) was HCM-related. The median (IQR) all-cause ER visit cost was $2,450 ($379–$7,591), of which $0 ($0–$200) was HCM related. Overall, patients reported a mean (SD) pharmacy cost of $21,383 ($53,165) during follow-up, of which only $1,222 ($3,127) was HCM related. The median (IQR) all-cause pharmacy cost was $7,521 ($2,361–$21,027), of which $389 ($90–$1,224) was HCM-related.
Discussion
In this retrospective claims-based economic study of US administrative claims data from the Optum® Market Clarity Integrated Clinical and Claims database, patients with oHCM reported substantial all-cause and HCM-related HCRU, with 98.6% of patients reporting an all-cause ambulatory visit over the 5-year follow-up period and 91.0% reporting an HCM-related visit. Additionally, a substantial proportion of patients reported hospital admissions during follow-up, with 57.5% reporting an all-cause admission and 43.5% an HCM-related admission. HCRU was associated with considerable all-cause and HCM-related healthcare costs, with an estimated mean all-cause healthcare cost per patient of over $180,000 over the 5-year follow-up period, of which around $68,000 was HCM-related, equating to approximately $36,000 each year with $13,600 attributable to HCM. Median healthcare costs were similarly high, with a median cost of approximately $113,000 over the 5-year follow-up period, of which around $20,000 was HCM-related.
A previous study by Jain et al.4 estimated all-cause HCRU and healthcare costs among US patients with oHCM over a 1-year follow-up period and similarly estimated that 99.1% of patients with oHCM had an ambulatory visit during follow-up, which may suggest that all-cause ambulatory HCRU by patients with oHCM remains consistent over longer-term follow-up. However, they also reported that 22.7% of patients with oHCM reported an all-cause inpatient admission during follow-up, which is substantially less than observed in this study over a 5-year follow-up, indicating that patients with oHCM more frequently require inpatient care over longer-term follow-up.
The estimated all-cause annual healthcare cost reported by this study exceeds the estimated $28,950 all-cause annual healthcare cost for US patients with heart failure reported by Bhatnagar et al.14 in 2018 CPI-adjusted USD, and is comparable to the $38,243 all-cause annual healthcare cost reported for patients with heart failure with preserved ejection fraction by Nguyen et al.15 These data indicate that patients with oHCM require similar HCRU as patients with heart failure, resulting in comparable healthcare costs. Our estimated all-cause healthcare cost is also comparable to an estimate by Jain et al.4 which estimated a mean all-cause healthcare cost of $26,929 in patients with oHCM over 1 year of follow-up. Similarly, the estimated mean HCM-related healthcare cost per year is comparable with that reported by a previous retrospective observational study that used claims data from the HealthCore Integrated Research Database and estimated an HCM-related healthcare cost of $11,855 per year in 2019 USD based on 2 years of follow-up. This indicates that HCM-related healthcare costs remain broadly consistent over the longer-term follow-up period used in this study9. Additionally, as the prevalence of HCM is increasing in the United States over time, the total cost of oHCM to the economy and healthcare system seems likely to increase.
Overall, pharmacy-related healthcare costs made up a small proportion of HCM-related healthcare costs, with only $1,222 of mean HCM-related healthcare costs per patient during follow-up attributable to pharmacy costs out of a mean total HCM-related healthcare cost of $67,531. This may be explained by how standard-of-care pharmaceutical treatments for oHCM consist of BB and CCB therapies and disopyramide, which are intended to alleviate oHCM symptoms rather than address the cause of the disease and are usually available generically at relatively low cost3.
This study further demonstrates the utility of administrative claims and EHR databases for researchers. An advantage of the claims database we used is that it contains records for ≥60 million US patients, facilitating research into diseases like oHCM that have a relatively low prevalence, which would be more challenging if a database with fewer patient records was used16. Additionally, the claims database used links anonymized EHR data to comprehensive patient medical and pharmacy claims across both hospital and community healthcare settings across the United States, enabling the calculation of robust estimates of real-world patient HCRU and healthcare costs, which would not be possible using EHR data alone17.
The introduction of emerging therapies, such as the cardiac myosin inhibitors aficamten and mavacamten may impact total healthcare spending. Future studies should be conducted to capture the impact of novel treatments on pharmacy-related healthcare costs, along with other aspects of HCRU and healthcare costs among patients with oHCM.
Limitations
The HCRU and healthcare costs of patients with HCM were identified based on ICD-9 and ICD-10 diagnosis codes. However, the identification of patients may be affected by inconsistencies like incorrect coding. This limitation was addressed by ensuring that eligible patients had ≥2 claims with diagnosis codes for HCM and by not using generic codes when identifying patients for inclusion. Additionally, the assessment of HCM-related HCRU and healthcare costs may have been affected by instances where HCM ICD codes were listed for unrelated healthcare claims. There may have been instances in which patients with nHCM were misclassified as having oHCM due to the presence of claims for standard-of-care oHCM treatment during the baseline period prior to their first HCM claim. However, because patients with nHCM do not typically receive these treatments before their first HCM claim, and SRT is not indicated for nHCM, it is unlikely that a meaningful number of patients with nHCM were included. Although sensitivity analyses were not performed in this study, future research could explore alternative classification criteria (e.g. excluding patients with only medication claims) to assess the robustness of these results. Healthcare costs were defined as the amount billed by the payer, reflecting the amount charged to a payor in the US healthcare system (e.g. a commercial insurer), rather than what a given patient paid for their healthcare. This study exclusively used US-based data, so results may not be generalizable to other countries or healthcare systems. Data validity may be limited by missing data in patient medical records. However, this is a limitation across all real-world studies. Adjusted analyses were not feasible due to small subgroup sizes and incomplete covariate information. Hence, results were descriptive, and analyses were unadjusted for covariates or confounding factors.
Conclusions
These real-world data demonstrate that US patients with oHCM experience substantial all-cause and HCM-related HCRU and costs over 5 years of follow-up, with HCM-related healthcare costs driven largely by inpatient costs and ambulatory visit costs. Pharmacy costs made up only a small proportion of HCM-related healthcare costs, possibly indicating that pharmacotherapies for oHCM were mostly low-cost, generic treatments. Further claims-based economic studies should be conducted in the future to establish the impact of novel treatments for oHCM on HCRU and healthcare costs.
Supplementary Material
Acknowledgements
Medical writing support was provided by Philip Ruane of Envision Value & Access, a part of Envision Medical Communications, and funded by Cytokinetics Inc.
Declaration of financial/other interests
NR is supported by the National Heart, Lung, and Blood Institute of the National Institutes of Health under Award Number K23HL166961. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. NR declares speaking honoraria from Zoll, Inc, research grants to her institution from Bristol Myers Squibb, Inc, and consulting fees from Roche Diagnostics, American Regent, Bristol Myers Squibb, Inc, AstraZeneca, Idorsia, and Novo Nordisk. MB and SS are employees of and hold stock in Cytokinetics Inc. KB, QA, and AB are employees of Optum Inc., which acted as a paid consultant to Cytokinetics Inc in connection with this study. AO reports consulting for Bayer, Avidity, Alexion, Cytokinetics, MyoKardia/Bristol Myers Squibb, Lexeo, Imbria, Corvista, Tenaya Therapeutics, Stealth BioTherapeutics, Edgewise Therapeutics, BioMarin Pharmaceuticals, and a research grant to the institution from Bristol Myers Squibb.
Peer reviewers on this manuscript have no relevant financial or other relationships to disclose.
Declaration of funding
Funding for this study was provided by Cytokinetics Inc.
Footnotes
Previous presentations
Parts of these data have previously been presented at the 2024 ISPOR annual conference, Atlanta, Georgia, 5–8 May 2024.
Data availability statement
The data that support the findings of this study were originated by and are the property of Optum, Inc, which has restrictions prohibiting the authors from making the data set publicly available. Requests for data sharing can be submitted to Qiana Amos at Optum (Qiana.Amos@optum.com).
References
- [1].Maron MS, Hellawell JL, Lucove JC, et al. Occurrence of clinically diagnosed hypertrophic cardiomyopathy in the United States. Am J Cardiol. 2016;117(10):1651–1654. doi: 10.1016/j.amjcard.2016.02.044. [DOI] [PubMed] [Google Scholar]
- [2].Husser D, Ueberham L, Jacob J, et al. Prevalence of clinically apparent hypertrophic cardiomyopathy in Germany-An analysis of over 5 million patients. PLoS One. 2018;13(5):e0196612. doi: 10.1371/journal.pone.0196612. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [3].Ommen SR, Ho CY, Asif IM, et al. 2024 AHA/ACC/AMSSM/HRS/PACES/SCMR guideline for the management of hypertrophic cardiomyopathy: a report of the american heart association/american college of cardiology joint committee on clinical practice guidelines. Circulation. 2024;149(23):e1239–e1311. doi: 10.1161/CIR.0000000000001250. [DOI] [PubMed] [Google Scholar]
- [4].Jain SS, Li SS, Xie J, et al. Clinical and economic burden of obstructive hypertrophic cardiomyopathy in the United States. J Med Econ. 2021;24(1):1115–1123. doi: 10.1080/13696998.2021.1978242. [DOI] [PubMed] [Google Scholar]
- [5].Guo L, Ma Z, Yang W, et al. Identifying obstructive hypertrophic cardiomyopathy from nonobstructive hypertrophic cardiomyopathy: development and validation of a model based on electrocardiogram features. Glob Heart. 2023;18(1):40. doi: 10.5334/gh.1250. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [6].Butzner M, Maron M, Sarocco P, et al. Clinical diagnosis of hypertrophic cardiomyopathy over time in the United States (a population-based claims analysis). Am J Cardiol. 2021;159:107–112. doi: 10.1016/j.amjcard.2021.08.024. [DOI] [PubMed] [Google Scholar]
- [7].Packard E, de Feria A, Peshin S, et al. Contemporary therapies and future directions in the management of hypertrophic cardiomyopathy. Cardiol Ther. 2022;11(4):491–507. doi: 10.1007/s40119-022-00283-5. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [8].Maurizi N, Antiochos P, Owens A, et al. Long-term outcomes after septal reduction therapies in obstructive hypertrophic cardiomyopathy: insights from the SHARE registry. Circulation. 2024;150(17):1377–1390. doi: 10.1161/CIRCULATIONAHA.124.069378. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [9].Butzner M, Maron M, Sarocco P, et al. Healthcare resource utilization and cost of obstructive hypertrophic cardiomyopathy in a US population. Am Heart J Plus. 2022;13:100089. doi: 10.1016/j.ahjo.2022.100089. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [10].Butzner M, Sarocco P, Maron MS, et al. Characteristics of patients with obstructive hypertrophic cardiomyopathy in real-world community-based cardiovascular practices. Am J Cardiol. 2022;174:120–125. doi: 10.1016/j.amjcard.2022.03.023. [DOI] [PubMed] [Google Scholar]
- [11].Owens AT, Sutton MB, Gao W, et al. Treatment changes, healthcare resource utilization, and costs among patients with symptomatic obstructive hypertrophic cardiomyopathy: a claims database study. Cardiol Ther. 2022;11(2):249–267. doi: 10.1007/s40119-022-00257-7. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [12].Desai NR, Sutton MB, Xie J, et al. Clinical outcomes, resource utilization, and treatment over the disease course of symptomatic obstructive hypertrophic cardiomyopathy in the United States. Am J Cardiol. 2023;192:16–23. doi: 10.1016/j.amjcard.2022.12.030. [DOI] [PubMed] [Google Scholar]
- [13].Consumer Price Index for All Urban Consumers. Medical Care. Series ID: CUUR0000SAM [Internet]. Washington, DC: US Bureau of Labor Statistics. 2025. http://data.bls.gov/cgi-bin/surveymost?cu [Google Scholar]
- [14].Bhatnagar R, Fonarow GC, Heidenreich PA, et al. Expenditure on heart failure in the United States: the medical expenditure panel survey 2009-2018. JACC Heart Fail. 2022;10(8):571–580. doi: 10.1016/j.jchf.2022.05.006. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [15].Nguyen C, Bamber L, Willey VJ, et al. Patient perspectives on the burden of heart failure with preserved ejection fraction in a US commercially insured and medicare advantage population: a survey study. PPA. 2023;ume 17:1181–1196. doi: 10.2147/PPA.S395242. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [16].Liu J, Barrett JS, Leonardi ET, et al. Natural history and real-world data in rare diseases: applications, limitations, and future perspectives. J Clin Pharmacol. 2022;62(suppl 2):S38–S55. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [17].Dillon P, Siadimas A, Roumpanis S, et al. Electronic health record data for assessing risk of hospitalization for COVID-19: methodological considerations applied to multiple sclerosis. Mult Scler Relat Disord. 2023;71:104512. doi: 10.1016/j.msard.2023.104512. [DOI] [PMC free article] [PubMed] [Google Scholar]
Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
Data Availability Statement
The data that support the findings of this study were originated by and are the property of Optum, Inc, which has restrictions prohibiting the authors from making the data set publicly available. Requests for data sharing can be submitted to Qiana Amos at Optum (Qiana.Amos@optum.com).
