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. Author manuscript; available in PMC: 2025 Mar 1.
Published in final edited form as: Am J Otolaryngol. 2023 Dec 12;45(2):104179. doi: 10.1016/j.amjoto.2023.104179

Tracheostomy-Related Durable Medical Equipment: Insurance Coverage, Gaps, and Barriers

Palmer L Foran 1,*, William J Benjamin 2,*, Ethan Sperry 3, Simon Best 4, Sarah E Boisen 5, Barbara Bosworth 6, Martin Brodsky 7, David Shaye 8, Michael J Brenner 9, Vinciya Pandian 10
PMCID: PMC10939813  NIHMSID: NIHMS1955090  PMID: 38118384

Abstract

Purpose:

Tracheostomy care is supply- and resource-intensive, and airway-related adverse events in community settings have high rates of readmission and mortality. Devices are often implicated in harm, but little is known about insurance coverage, gaps, and barriers to obtaining tracheostomy-related medically necessary durable medical equipment. We aimed to identify barriers patients may encounter in procuring tracheostomy-related durable medical equipment through insurance plan coverage.

Materials and Methods:

Tracheostomy-related durable medical equipment provisions were evaluated across insurers, extracting data via structured telephone interviews and web-based searches. Each insurance company was contacted four times and queried iteratively regarding the range of coverage and co-pay policies. Outcome measures include call duration, consistency of explanation of benefits, and the number of transfers and disconnects. We also identified six qualitative themes from patient interviews.

Results:

Tracheostomy-related durable medical equipment coverage was offered in some form by 98.1% (53/54) of plans across 11 insurers studied. Co-pays or deductibles were required in 42.6% (23/54). There was significant variability in out-of-pocket expenditures. Fixed co-pays ranged from $0–30, and floating co-pays ranged from 0–40%. During phone interviews, mean call duration was 19±10 minutes, with an average of 2±1 transfers between agents. Repeated calls revealed high information variability (mean score 2.4±1.5). Insurance sites proved challenging to navigate, scoring poorly on usability, literacy, and information quality.

Conclusions:

Several factors may limit access to potentially life-saving durable medical equipment for patients with tracheostomy. Barriers include out-of-pocket expenditures, lack of transparency on coverage, and low-quality information. Further research is necessary to evaluate patient outcomes.

Keywords: Tracheostomy, Insurance, Durable Medical Equipment (DME), Patient-centered care, Adverse events, Healthcare access, Home care

Introduction

The number of tracheostomies performed in critical care settings has been rising steadily for decades, and the number of patients in the community with a tracheostomy has risen even more dramatically [1–3]. The drivers of this increase in outpatient tracheostomy care include advances in the care of complex diseases [4], financial pressures to expedite hospital discharges [5], a drive to decrease hospital-associated infections [6], and patient-centered goals of promoting autonomy and improved quality of life [7–9]. As a result, there has been a dramatic increase in the demand for home nursing care and the supplies and equipment necessary to maintain these patients safely. Given the long history of the nursing profession in advocating for patient-centered care [10–15], assuring that basic care need of patients is met is of immediate relevance to nurses and all members of the healthcare team.

In the context of the COVID-19 pandemic, there has been a surge in the number of inpatients and outpatients with a tracheostomy, at times outstripping available supplies [1]. Tremendous attention has focused on the shortages of personal protective equipment [16]and ventilators [17], as well as the inpatient management of tracheostomy [18, 19]. A less recognized phenomenon was how the disruption of supply chains and the unprecedented demand for critical care supplies in intensive care units [20, 21] affected outpatients with a tracheostomy in the community. Outpatients rely on many of the same supplies for standard care, ranging from suction machines and suction tubing to tracheostomy tubes, inner cannulas, and dressing supplies – all of which are critical for maintaining tracheostomy sites and ensuring airway safety (Table 1).

Table 1:

Durable medical equipment needed for tracheostomy management

Tracheostomy Supplies Suction Equipment Humidification System Other Supplies
Tracheostomy tubes (sized) Portable suction machine Air compressor Hand washing supplies Cardiac/apnea monitor
Tracheostomy tube (1 size smaller) Suction connecting tubing Nebulizer bottles Mucus traps CO2 monitor
Trach tube ties Suction catheters Tracheostomy mask Sterile paper cups Pulse oximeter
Dressing supplies (gauze) Saline solution Aerosol tubing Tissues Oxygen
Hydrogen peroxide Sterile Jars w/ screw tops Water trap Manual resuscitation bag with mark Oxygen concentrator
Sterile Water Saline ampules HME Intercom (baby monitor or video monitor) Oxygen supply tubing
Saline Hand powered suction devices Room humidifier Thermometer Ventilator (case by case)
Water soluble lubricant YanKauer suction handle Sterile water Stethoscope BiPAP
Blunt-end bandage scissors Sims connector Mist heater (if ordered) Disposable glove (powder free) Nebulizer Equipment (aerosolized medication)
Tweezers (or hemostats) Group or mist tent (rare) Trach scarf or bib Dura-neb portable compressor DeVilviss Pulmo-Aide compact compressor
Sterile q-tips Vapotherm Rolled-up towel Pressure manometer
Trach care kits (or pipe cleaners) Speaking valves Extra smoke detectors and fire extinguisher for electronic fires
Luer lock syringes Trach guard
Consider* emergency generator
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When tracheostomy complications occur outside the hospital, the outcomes range from readmission to permanent harm or death [22, 23]. The number of patients with tracheostomy in acute care and home care settings continues to spiral due to prolonged ventilator dependence after critical illness associated with COVID-19 [24]. Prevention and management of these adverse events require appropriate durable medical equipment such as extra tracheostomy tubes and cleaning supplies. The mortality associated with tracheostomy [25] underscores the importance of having adequate supplies on hand in home settings where access to healthcare is limited. Nurses who care for these patients are positioned well to explore the barriers to obtaining tracheostomy-related equipment and advocate for improved access to care.

Therefore, the study’s objective was to evaluate insurance co-pays, deductibles, and coverage, as well as the availability of basic coverage information for tracheostomy-related durable medical equipment that may serve as barriers patients with a tracheostomy may encounter in procuring tracheostomy-related durable medical equipment through insurance plan coverage.

Methods

Design

A descriptive study was conducted in two phases – 1) telephone interviews and 2) structured website analyses between August 2020 and February 2021. The Johns Hopkins Institutional Review Board acknowledged this study as exempt (IRB00144937) based on the methodology that this study does not cause greater than minimal risk. The strengthening the reporting of observational studies in epidemiology (STROBE) guidelines was used to report findings.

Participants

All insurance companies’ respective websites were searched to gather information and identify contact information for customer representatives. A convenience sample of 44 customer representatives from 11 insurance companies was included as participants for the telephone interviews. The representatives were eligible if they answered the phone call. Representatives were excluded if they redirected us to another representative who was knowledgeable about tracheostomy-related questions. Since the insurance company representatives’ characteristics had no implications on insurance coverage, their characteristics were not evaluated.

Outcome Measures and Data Collection

Phase I: Telephone interviews

Data on coverage type and specifications were obtained by querying the representative using a telephone script with a standardized introduction and question protocol (supplemental Figure 1). Questions related to the number of plans the insurer offered for patients with a tracheostomy, range of coverage options, and associated out-of-pocket expenditures. The surveyor logged call duration, the number of transfers and disconnects, and the variability of information procured. Information was logged using spreadsheets by a single investigator (PF) to ensure consistency. Full Coverage was defined as all costs were covered with no out-of-pocket expenditure as long as pre-authorization was established by the health insurance company with the medical provider. Fixed Partial Coverage was defined as no deductible with 80% of the expenses covered, and patients were expected to use out of pockets to meet the remaining 20% of expenses. Variable Partial Coverage was defined as policies that required a deductible, with or without any additional out-of-pocket expenses.

A total of 4 calls were made to each insurance company to assess information variability. Information was graded on a Likert scale of 1–4 for the variability of answers, with anchors of 1 corresponding to no variability (entirely uniform information of data across calls), 2 little variability, 3 moderate variability, 4 a lot of variability, and 5, indicating 100% contradiction. Data collection did not involve audio or audiovisual recording, and no identifying information of the insurance representatives was collected.

Phase II: Website Reviews

Following the telephone survey, each insurance company’s website was evaluated for data on insurance contracts, including the percentage of coverage, co-pays, co-insurance ranges, and deductibles. In addition, the 11 websites were evaluated for quality and ease of use, and quality of information, adapted from previously published methods [26]. Briefly, a Likert scale was used to assess the readability, accessibility, and usability of the information provided on the website. The readability was rated (1) illegible, full of jargon, (2) difficult to read, lots of jargon, (3) somewhat understandable, some jargon, (4) legible, little jargon, and (5) completely understandable. Accessibility of core information related to coverage and global assessment was also rated on a scale of 1 – 5 based on the depth of information found on the website – (1) nearly impossible to find information, (2) information difficult to find, (3) information somewhat available, (4) information relatively easy to access, (5) information very accessible. Usability was rated as – (1) if found was nearly insufficient, (2) insubstantial, (3) lacking in volume, (4) almost comprehensive, (5) depth of information readily available.

Identification of Qualitative Themes

Qualitative themes were identified through author review of patient interviews. A grounded theory approach was taken, and themes were identified from interview scripts. Following this, representative quotes were obtained and presented to represent each major identified theme.

Data analysis

Descriptive analysis was performed using mean, standard deviation if interval data were parametric, and median, interquartile range were calculated if data were nonparametric. Frequencies and percentages were calculated for categorical variables.

Results

All eleven insurance companies were contacted on four separate occasions, corresponding to structured interviews of 44 representatives. The median call duration was 17.5 minutes (IQR: 11.5, 45), and the median number of disconnects or transfers to another representative was 2.0 times (IQR: 1, 3) (Table 2). When calls were repeated to the same insurance company, the median information variability score between representatives of a given company was 3.0 (IQR: 1, 4), which corresponded to moderate variability (lack of uniformity) in responses.

Table 2:

Average call duration and number of transfers for each insurance company

Insurance Company Average Call Duration In minutes Average Number of Transfers Information Variation Score
A 22.5 4.5 3
B 7.0 1.0 1
C 17.5 3.0 2
D 45.0 2.0 3
E 50.0 2.5 4
F 16.5 3.0 3
G 30.0 2.0 4
H 45.0 3.0 5
I 8.0 1.0 1
K 11.5 1.0 1
L 11.5 1.0 1
Average Total 24.0 2.2 2.5
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Representatives from all 11 companies provided data on insurance policy coverage for tracheostomy-related durable medical equipment. The breakdown of coverage was full coverage (no out-of-pocket) in 54.5%; partial coverage (fixed 20% out-of-pocket) in 9.1%, or variable coverage (deducible or deductible plus the percentage of costs) in 36.4%. Variable coverage had deductibles that ranged from $1,500 to $6,500, with or without co-pays, which ranged from 20% - 30% (Table 3). The representatives were not asked to differentiate between individual policies within plans. In instances where plans differed for insurers, the representative was instructed to provide answers corresponding to the largest plan.

Table 3:

Types of health insurance coverage by insurance companies

Insurance Company Coverage/ Coverage type Coverage Specifications
Coverage Deductible/Copay Pre-authorization
A Variable DME Coverage Plan dependent deductibles and copays. Deductible or copay dependent on plan Required
B Full DME Coverage Full coverage for DME with pre-authorization and shown medical necessity. No copay or deductible, Required
C Partial DME Coverage In network DME coverage of 80%, out of network DME coverage of 0% No copay or deductible. Out of pocket cost dependent on network status of DME. Required
D Full DME Coverage Full coverage with preauthorization for items >$500, and pre-authorization required for rented goods No copay or deductible. Required for items > $500
E Variable DME Coverage A variety of plans offer different deductibles and copays. High deductible plan - $6500. Mid-tier plans between $1,500 & $3,500, followed by copay percentages ranging from 20% - 30%. Required
F Variable DME Coverage DME fully covered with preauthorization and shown medical necessity. No copay or deductible. Required
G Full DME Coverage Full coverage for DME with pre-authorization. No copay or deductible. Required
H Full DME Coverage Full coverage for DME with pre-authorization. No copay or deductible. Required
I Variable DME Coverage DME coverage based on medical necessity with a 20% copay after an agreed upon amount. Copay: 20% of equipment cost. Required
J Full DME coverage Medicaid sponsored full DME coverage with pre-authorization. No copay or deductible. Required
K Variable DME Coverage Highly variable degrees of coverage depending on whether or not the DME is listed under the plan. The tracheostomy care kit and other essential parts covered by their plan. Copay or deductible dependent on plan. Required
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Independent website analyses to further delineate differences within plans and to corroborate findings of telephone interviews demonstrated 54 plan types. The number of plans per insurer was 5 ± 2. Of these, 53 (98.1%) had documentation of coverage for tracheostomy-related durable medical equipment; however, co-pays were required for 23 (42.6%) of the plans, corresponding to the different number of plans offered by each insurer and the variability in the information provided by the representative and information found on the websites. Out-of-pocket expenses included fixed co-pays from $0 to $30 and floating co-pays ranging from 0% to 40% of the total cost of tracheostomy-related durable medical equipment.

While the majority (8 [72.2%]) of the information found on websites was legible and had relatively little jargon (Figure 1), the insurance company websites were challenging to navigate, with only 2 (18.2%) insurance companies displaying information in a manner that was straightforward to access and comprehensive (Figure 2). Many sites required extensive search to find relevant information, if available at all. Some companies posted links to their websites for insurance contacts, leading to a cluttered visual display that was not conducive to use by consumers of varying health literacy levels (Figure 3).

Figure 1:

Figure 1:

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Readability scores are displayed. 1, illegible, full of jargon; 2, difficult to read, lots of jargon; 3, somewhat understandable, some jargon; 4, legible, little jargon; and 5, completely understandable

Figure 2:

Figure 2:

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Accessibility scores are displayed. 1, nearly impossible to find information; 2, information difficult to find; 3, information somewhat available; 4, information relatively easy to access; 5, information very accessible.

Figure 3:

Figure 3:

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Usability scores are displayed. 1, if found was nearly insufficient; 2, insubstantial; 3, lacking in volume; 4, almost comprehensive; 5, depth of information readily available.

Six themes were identified from qualitative review of patient interview scripts. These themes included 1) insurance coverage for DME, 2) COVID-related challenged, 3) Insurance guiding medical care, 4) Dysfunctional healthcare provider relationship, 5) Opting out of conventional options, and 6) Trust in provider. Themes and representative quotes can be found in Table 4.

Table 4:

Summary of Themes and Examples

Theme Definition Patient and family examples
Insurance coverage for DME Evidence of interactions with insurance for coverage of trach supplies “It was clear to me they didn’t understand what a trach even was”
“Anytime I tried to work with them, it was extremely challenging… you just end up with the burden of all the administrative tasks, everything falls on the patient”
“I went through three rounds of appeals over six and a half months” (On the difficulty of obtaining a new humidifier)
COVID-related challenges Evidence of disruptions in trach care and their impact on patients during the COVID-19 pandemic “Most of the concerns trach patients were shared were non-emergency, but concerns that were necessary for their routine survival. However, they weren’t considered important enough to warrant a visit to the ED.”
“A lot of trach patients are on Medicaid and didn’t have reliable physician coverage and rely on ED’s. During COVID the trach violated hospital aerosolization policies and there often wasn’t an available isolation room so patients were turned away”
“Patients had serious, but elective surgeries cancelled due to lack of operating room equipment (filters for suctions, etc.)”
“Supply availability was a big problem, patients would spread out their trach changes to once every few months, and then their trach wouldn’t be in stock so they’d have to use a different trach, and the infrequent changes with new equipment resulted in more bleeds and more ER visits, which were challenging in COVID”
Insurance guiding medical care Evidence of trach care being altered to fit within the context of insurance coverage “Patients get home and their get one trach every month, rather than one every two weeks per prescription which leads to an internal dilemma of should I call my doctor and can they help?”
“The most common thing is where the provider wants a certain thing done at a certain frequency (trach changes biweekly) and the insurance company will only authorize a trach change once a month, and an internal dilemma develops where the patient has been told that a change biweekly is best for your health yet one a month is all that’s available through insurance.”
And the patients get really frustrated when the system breaks down, eventually their physician changes the prescription to fit within the insurance guidelines and then the patients sees their providers authoritative opinion altered by billing codes”
Dysfunctional healthcare provider relationship Impressions of the challenge of trach care between patients and their providers. “So when I had my specific little change it was like my physician didn’t know how to management to EMR navigation to make little adjustments which leads patients to individualize and seek outside options.”
On Trach Humidification: “There are multitudes of options, however patients are often only presented with one, and when they want to try other options they meet a lot of resistance within the electronic medical record ordering environment”
Opting out of conventional options Evidence of patients seeking out trach supplies outside of the DME Insurance environment “I have not gotten the DME that I currently have through insurance, I just ordered my stuff on Amazon. As do many other people that I know because they (Insurance companies) won’t work with you. If they don’t know you they don’t care”
Trust in Provider Impression of provider trust due to insurance and provider mismatch. On Insurance guiding care: “When your doctor changed their mind based on what an insurance company told them you star to lose faith in the medical side”
“No one has faith in insurance but when you start to lose faith in your doctor, their the only person in your life who is treating your medical problems and when their authoritative opinion is wiped away by a random billing code it can really damage your relationship with them.”
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Discussion

This study highlights important barriers that may impede patient and caregiver access to tracheostomy-related durable medical equipment. In addition, it provides the patient perspective on how these barriers impact the patient experience. Such barriers are problematic both from the standpoint of selecting an insurance carrier and obtaining necessary supplies once a policy has been chosen. For patients and caregivers already struggling with the medical complexity inherent in having a tracheostomy and associated medical disorders, added difficulty in acquiring needed supplies could increase the risk of adverse events. The presence of over 50 types of plans to choose from; widely varying coverage within each plan; unreliable information provided by insurance company representatives; and vague or difficult to navigate websites explain why patients may not access equipment necessary to prevent complications associated with a tracheostomy.

Challenges with Tracheostomy Care and Access to Supplies

The largest prospective tracheostomy cohort to date (n = 4595) found an overall rate of adverse events of 8.4% (adults) and 3.9% (pediatrics) per 1000 tracheostomy days [4]. Accidental decannulation, hemorrhage, and tube obstruction were the most common adverse events. In a previous study of 1130 patients in the United States, complication rates have been reported to be as high as 40% [27]. There may be additional adverse events that are unidentified and underreported in home settings [22].

Education and supplies are interrelated considerations. In addition to the need for anticipatory guidance of tracheostomy-related supplies, several studies highlight the importance of educating patients and their family members about cleaning and troubleshooting tracheostomy-related durable medical equipment to prevent near-miss airway events or actual adverse events [28–31]. Tracheostomy-related adverse events can be catastrophic, resulting in immediate death or permanent disability [25, 32, 33]. One study reported that the odds of rehospitalization for children (<2 years of age) with a tracheostomy related equipment malfunction was 8.5, with a 95% confidence interval of 2.63 (p = 0.02) [34]. Issues surrounding the procurement of durable medical equipment hold the potential to be further exaggerated in the COVID-19 era, where equipment delivery may be limited. In fact, we identified COVID-related disruption as a major theme from patient interviews. Patients struggled not only with access to supplies, but also with access to care as aerosolization policies and resource restraints restricted their ability to seen in the clinical setting.

Discussions and demonstrations on troubleshooting equipment, emergency airways measures, and basic life-saving skill will proactively prepare patients and caregivers for potential equipment failure scenarios. Complex home care education is an integral component of nursing and ensuring care continuity and appropriate anticipatory guidance highlights the potential for increased involvement of nurses in the health insurance sector [35]. Positive examples of this can be seen in nurse-managed health centers (NMHCs) that provide comprehensive primary care, disease prevention, and health promotion in rural and urban areas where significant economic barriers may exist for health care options [35].

The pre-existing challenges around obtaining necessary tracheostomy-related durable medical equipment may be exacerbated when patients also require home mechanical ventilation, which incurs increased costs [36, 37]. An interview of 13 families of children and young adults with a tracheostomy highlighted the presence of significant, durable medical equipment-related challenges [38]. Families reported feeling overwhelmed by the number of supplies; lack of knowledge regarding setup and organization of these equipment; and inadequate education on how to troubleshoot equipment malfunction. In addition, the families also reported that the companies that delivered the supplies had little insight into the urgency of resolving airway-related equipment failures [38].

Furthermore, the untoward effects of device scarcity are not evenly distributed across the population. Social determinants of health are a key driver of disparate outcomes across socioeconomic, geographic, and ethnic dimensions, affecting what patients have health insurance that covers the costs of this equipment [39]. We found that insurance coverage for durable medical equipment represents yet another hurdle in this vulnerable population. Understanding potential challenges associated with tracheostomy supplies can facilitate discharge planning during admissions [40–44].

The Patient and Family Voice

Part of the impetus for this study was the poignant accounts provided by the Patient and Family Committee of the Global Tracheostomy Collaborative. This group represents the patient’s voice in matters of tracheostomy care and has contributed significantly to surfacing pressing patient-centered concerns relating to access to care, transitions, and patient safety concerns [7, 8, 18, 19, 45, 46]. The core group consists of over 100 patients and families or caregivers with a tracheostomy. Notably, it is a leadership hub for a much larger network of tens of thousands of individuals, many of whom maintain contact through social media networks [8]. These foremost stakeholders have highlighted the challenges and safety concerns around access to needed supplies as part of a larger narrative exploring challenges with private duty nursing and scarcity of supplies during the COVID-19 pandemic [47]. This context, which the committee has documented in recent international webinars, newsletters, and state government advocacy campaigns (https://www.globaltrach.org/), attests to the urgency around these issues, which often escape the notice of clinicians and insurance companies.

For patients requiring expensive durable medical equipment —often in high volume over prolonged periods— it is essential to understand insurance plans coverage to set aside the proper amount of financial assets to pay for medical equipment. The financial toxicity of complex medical care is well documented, but a relative paucity of such work has considered outpatient challenges in key medical equipment. Transparent terms of insurance coverage are imperative in order for patients and caregivers to make informed choices, ensure financial provisions for expenditures, and avoid the risk of potentially catastrophic adverse events. Our data is in agreement with earlier literature showing that both payer and supplier informational resources are challenging to navigate [48]. While health insurance is marketed as a commodity in the United States, even highly educated consumers often find it challenging to undertake online shopping for best plans that meet their needs, placing plans in an online “basket” for side-by-side comparison [49].

How Insurance Barriers Affect Patients

Patients and families with tracheostomy are already struggling with the challenges of tracheostomy care [38, 50–52]. Our study found that the mean call duration with insurance company customer service agents was 19 minutes, with an average of 2 transfers or disconnects per call. Variability was also noted in the continuity of plan information that was offered from different insurance representatives within the same insurance company. These layers of inconsistencies that immediately present themselves to the consumer prevent the relay of accurate, accessible information that permits an informed decision regarding complex home care to be made. Furthermore, our study group’s level of literacy and education likely exceeds that of the typical consumer for these services; therefore, it is possible that our data underestimate the magnitude of barriers whether in time to ascertain the necessary data or probability of eventual success.

To compound these challenges, the definitions of varying types of coverage were not clearly provided during inquiry calls, nor were these definitions routinely displayed on insurance company webpages. Tracheostomy-related information was often dispersed across various pages and intermixed with distracting details irrelevant to tracheostomy care or other coverage provisions. The lack of transparency and the obstacles to navigating informational resources may explain many of the difficulties reported by patients and caregivers in obtaining tracheostomy-related durable medical equipment. These difficulties were echoed in our qualitative analysis, where patients expressed frequent concern with the and frustration with the inflexibility and inadequate coverage of DME under insurance plans. Leading some patients to seek supplies outside of the insurance system and rely on commercial markets such as Amazon instead.

Such findings have significant implications for nursing practice, research, and policy. From a practice standpoint, nurses involved in the care and education of patients with a tracheostomy must ensure that adequate supplies have been detailed and thoroughly discussed with patients and caregivers. Anticipatory guidance may be an initial step in financial planning for families requiring tracheostomy-related durable medical equipment, but the broader goal is to improve access to necessary supplies and to protect this vulnerable patient population from financial hardship arising from necessary care.

Leading in Challenging times

One of the defining features of the nursing profession is its commitment to the comprehensive care of patients, with such leadership on prominent display amid the current pandemic [53]. Nurses, physicians, allied health professionals who participate in the care of patients with tracheostomies should anticipate supply-related challenges that may impede care after discharge and provide patient-centered care [54–57]. All necessary equipment should be identified in advance, using an approach that ensures a thorough understanding of equipment needs. Nurses have a central role in patient education around tracheostomy care, and nurses can partner with social workers and other care providers to ensure that equipment needs are met; anticipatory guidance may also mitigate threats to the financial stability of families. Unexpected increases in out-of-pocket or health insurance costs may cause patients or families with already precarious finances to lose financial stability; medical expenses are the leading cause of personal bankruptcy but many patients can qualify for medical disability or may have other options available to alleviate financial burdens [58].

Perhaps the most concerning findings that emerged from our qualitative analysis were the negative impact the insurance and DME systems have on the patient-provider relationship. We found that a mismatch between prescriptions and insurance coverage options led to decreased patient trust in providers and beliefs that the insurance system was driving medical decision making. Further, we identified that difficulties in utilizing the electronic medical record to prescribe trach-related equipment was an additional challenge straining the patient-provider relationship. Moving forward, provider understanding of these challenges and anticipatory guidance may help instill trust even in the setting of known challenges in DME procurement and coverage.

Limitations and Future Research

This study had several limitations that reflect the exploratory nature of research in this field. First, while the major insurance carriers are large national entities, the specific insurers contacted were predominately within the state of Maryland and the surrounding region, which may decrease generalizability. An informal online examination of major carriers across other states in the Midwest, Southeast, and West coast suggests that these findings are relatively applicable to other states and companies. Findings from this study are also influenced by the limited sample size and the awareness of insurance agents that our inquiries were made with the intent of research purposes rather than for a specific patient’s insurance policy. In addition, there is inherent subjectivity in assessments regarding the assessment of websites and the flow of the interviews, despite the use of a structured script. The instruments used for assessment, while based on prior literature, were not rigorously validated, and therefore some of the quantitative results provided for scoring primarily serve to provide qualitative conclusions. Furthermore, the typical individual insured would likely be less facile with navigating websites, interacting with insurance company representatives, and potentially with medical language when compared to the research team, which consisted of medical professionals.

Conclusions

Tracheostomy care is a high-stakes area of healthcare due to the high morbidity and mortality associated with adverse events involving the airway, including the risk of hypoxic brain injury or other permanent harm. Limitations in insuring coverage, conflicting information, and challenges in navigating insurance policies all may impede high-quality tracheostomy care. Such barriers can reduce the financial stability of patients and may increase the risk of adverse events. Transparent information on tracheostomy-related durable medical equipment and provisions that ensure such care is affordable for patients are crucial for safe, informed care; therefore, improvements are needed in health policy and education surrounding insurance plan anticipation, selection, and coordination.

Relevance to Clinical Practice

While this study sheds light on current challenges in insurance coverage, this study leaves many questions unanswered and points to the need for future research. For example, while the study was premised on reported challenges experienced by patients and families in the community, no direct association between insurance barriers and patient outcomes was assessed. The patient and family committee of the Global Tracheostomy Collaborative is beginning to study patient challenges amid the scarcity of the pandemic formally. Whereas this study is hypothesis-generating in relation to healthcare outcomes, future work may more directly assess the link between supplies, access to care, and rate of adverse events. Tracheostomy supplies and durable medical equipment are necessary but not sufficient for safe outcomes. More data is needed to define best practices for ensuring safe transitions from hospital to the community and understanding the role of multidisciplinary approaches in the outpatient setting.

Supplementary Material

1

Funding:

NIDCD Mentored Patient-Oriented Research Career Development Award 1K23DC014758 (S. Best)

Footnotes

Conflict of Interest Statement: Drs. Brenner and Pandian serve as board of directors for Global Tracheostomy Collaborative (non-financial)

Declaration of Generative Artificial Intelligence Statement:

No generative AI was used in the writing of this manuscript.

Institution at which work was performed:

Johns Hopkins University

Publisher's Disclaimer: This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.

Contributor Information

Palmer L. Foran, Department of Otolaryngology-Head & Neck Surgery, Johns Hopkins University, Baltimore, Maryland, United States.

William J. Benjamin, University of Michigan Medical School, Ann Arbor, MI, USA.

Ethan Sperry, Individual with a tracheostomy, University of Cincinnati, Ohio, United States.

Simon Best, Department of Otolaryngology-Head & Neck Surgery, Johns Hopkins University, Baltimore, Maryland, United States.

Sarah E. Boisen, Pediatric Intensive Care Unit, Seattle Children’s Hospital, Seattle, Washington, United States.

Barbara Bosworth, Individual with a tracheostomy.

Martin Brodsky, Department of Physical and Medicine Rehabilitation, Johns Hopkins School of Medicine, Baltimore, Maryland, United States.

David Shaye, Department of Otolaryngology-Head & Neck Surgery, Harvard Medical School Massachusetts Eye and Ear.

Michael J. Brenner, Department of Otolaryngology-Head & Neck Surgery, University of Michigan, Ann Arbor, Michigan, United States, and President, Global Tracheostomy Collaborative, Raleigh, North Carolina, United States.

Vinciya Pandian, Center for Immersive Learning and Digital Innovation and Outcomes After Critical Illness and Surgery (OACIS) Research Group, Johns Hopkins University School of Nursing, Baltimore, Maryland, United States.

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