Navigating disability insurance in the American healthcare system for the low-grade glioma patient

Abstract

In the United States, diagnosis of grade 3 or 4 glioma qualifies patients for Social Security disability benefits. Low-grade gliomas (LGGs) can be similarly debilitating, with at least 31% of patients presenting with cognitive deficits and 80% with tumor-related epilepsy. A diagnosis of LGG does not in and of itself qualify patients for disability benefits; the burden of proof is substantially higher. We outline the American healthcare system process of medical documentation to support disability benefits, Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). We provide a template to assist providers in facilitating the application process for patients with LGG. The provider’s role is not to simply “declare” a patient disabled, but to provide comprehensive documentation regarding diagnosis, treatment, disease status, symptoms, and functional status in the medical record. As cognitive symptoms and seizures are 2 key sources of disability in LGG patients, selective referrals to neuropsychology and epileptology may improve patient care and bolster documentation of the patient’s symptoms in these domains. Likewise, connecting patients with social workers and disability claims representatives can assist them in navigating the complicated application process. We provide an extensive review for patient eligibility in the United States to receive disability. We map a comprehensive care process that may have relevance to multiple regions outside the United States. Providers are better able to help their patients navigate the disability application process when they understand how to address physical and cognitive changes for thorough care of their patient.

Patients With Low-Grade Glioma Face Burdensome Symptoms That Often Preclude Work

Patients with gliomas commonly experience debilitating neurologic, cognitive, and psychiatric symptoms that prevent them from working. This is especially true for patients with high-grade (grades 3 and 4) gliomas. Only 41% of patients with anaplastic oligodendroglioma or (formerly defined) oligoastrocytoma had returned to work within two and a half years of diagnosis,¹ and 14% of patients with glioblastoma who survived the first year returned to work.² Yet patients diagnosed with low-grade glioma (LGG) can face similar challenges. A study by Rydén et al. reported that patients with WHO grade 2 diffuse glioma were significantly less likely to work than matched controls.³ Only half returned to work within the first year after surgery.³ In a survey of 73 patients with grade 2 glioma, van Coevorden-van Loon et al. found that 69% reported that glioma affected their work.⁴ Major factors associated with reduced ability to work include the use of 2 or more antiepileptic drugs,⁴ as well as severe mental fatigue, a symptom experienced by 55% of LGG patient.⁵ Radiation doses exceeding 2 Gy are also associated with poorer cognitive function in LGG patient,⁶ which reduces health-related quality of life.⁷ Physical and cognitive changes occur from the time of diagnosis, through treatments to many years post-treatment or at recurrence. Thus, patients with LGG often find themselves unable to return to work as a result of both tumor and treatment.

Disability Evaluations Are Stricter for Patients With Low-Grade Than High-Grade Glioma

For working-age patients who are unable to work, it is essential to file for disability benefits to maintain an income. In the United States, the Social Security Administration (SSA) evaluates disability claims by considering not only how the patient’s morbidities affect functional status, but also the diagnosis. The SSA’s codification of brain tumors has not kept pace with rapid advances in our understanding of glioma biology. Current WHO guidelines recognize that grade 2 and 3 IDH-mutant astrocytomas and oligodendrogliomas exist on a biological spectrum. The SSA categorically distinguishes between grade 2 and 3 brain tumors; a diagnosis of high-grade glioma (grade 3 or 4) automatically qualifies the patient from a medical standpoint as a “compassionate allowance,” but a diagnosis of LGG (grade 2) does not. Thus, a patient with grade 2 astrocytoma does not medically qualify for disability benefits based on their cancer diagnosis, but will be evaluated based on post-treatment deficits to determine decreased functional capacity. Grade 2 gliomas are best conceptualized as low-grade malignancies, and the great majority of cases are life-limiting.⁸ The prognosis of grade 2 IDH-mutant astrocytomas is only marginally better than grade 3, with median survival of 11 years compared to 9 years.⁹ Similarly, median survival IDH-mutant oligodendrogliomas are 15 years for grade 3 tumors and estimated to be 20 years for grade 2 tumors.^10–12

The rate at which LGGs transform to higher grade tumors is reported to be as high as 72%,¹³ yet despite radiographic evidence of malignant transformation such as accelerated growth or new contrast enhancement, a tumor classified as grade 2 cannot be upgraded to grade 3 or 4 without pathology confirmation. Consequently, patients may still carry a diagnosis of grade 2 glioma after their tumor has transformed to higher grade, and thus still face a greater scrutiny when applying for disability benefits. For these reasons, patients with LGG who have chronic morbidity as result of tumor and treatment require special attention to obtain disability benefits.

The rate at which cancer patients return to work is affected not only by their specific diagnosis, but also by disability policy.¹⁴ We provide next an overview of the current policy of disability evaluation in the United States.

A Primer on the Disability Approval Process

The SSA has 2 programs that provide income to people with disabilities: Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). Patients may qualify for only SSDI, only SSI, or both, depending on their prior work history and current assets. Currently, 8.2 million people receive SSDI benefits, and 5.1 million received SSI benefits.^15,16 Although these programs have important differences (Table 1), the medical evaluation process is identical (Figure 1).

After screening disability applicants for other eligibility requirements (eg, work history, current income), evaluators review the patient’s medical record with 4 questions in mind¹⁷: (1) Does the condition interfere with work-related activities? (2) Does the patient have a condition listed as disabling? (3) Is the patient able to do their previous occupation? (4) Is the patient able to do any type of work anywhere in the national economy? In 2019, one quarter of SSDI applications were denied based on this medical evaluation (Figure 2) and 27% of applications were awarded, with the remainder denied based on technical or other nonmedical reasons.¹⁸

The SSA maintains detailed and complicated guidelines for this medical evaluation. Importantly, certain diagnoses are listed as “compassionate allowances,” meaning that any patient with such a diagnosis is automatically considered “disabled” from a medical standpoint (Table 2). Of note, the disability claim reviewer does not determine if a tumor is classified in a higher-grade bracket based on pathology documentation. Physician notes will need to reflect that the pathology under new criteria meets criteria for a higher-grade tumor.

If the patient’s diagnosis is not listed as a “compassionate allowance,” then evaluation is based on the patient’s comprehensive clinical status, with review of all documented physical, neurologic, cognitive, and psychiatric symptoms. This evaluation examines whether the patient is able to do their prior occupation, or any other type of work (eg, night security, grocery bagger, parking lot attendant). For example, a former physics professor would not obtain disability benefits if still capable of bagging groceries. Each patient, irrespective of age, is evaluated to determine whether they are capable of significant gainful activity. If an applicant is greater than 60 years old, evaluators consider them “advanced age” and expect their ability to train in another field to be limited. Patients at full retirement age (around 67 years old) are enrolled in Social Security retirement benefits, not disability benefits. Thus, detailed and accurate documentation of the patient’s diagnosis and symptoms is essential for the medical review.

Patients who are denied have the right to appeal twice, the second being to the Administrative Law Judge. Patients deemed able to some type of work will continue to be found not disabled. In the event one is found not disabled, no disability payments will be forthcoming to the patient. There are no agencies in the United States that will provide supplemental income in this case. However; should the patient have private short- and long-term disability through a former employer that payment can continue even if SSA disability is denied. Medical reviews are made often with short- and long-term disability, and at any time, the patient can be deemed not disabled by the company.

Tips for Providers Helping Patients File for Disability

Common and necessary documentation to support a disability claim includes diagnosis, comorbidities, and formal examination findings. For patients with LGG, documentation of response to treatment in the medical record is especially important. Section 13.13.b of the SSA “Blue Book” recognizes tumors that are “progressive or recurrent despite initial anticancer therapy.” ¹⁷ Any tumor growth, new contrast enhancement, or new symptoms should be specifically documented. Although common practice, it is necessary to clearly document when a change in management occurs, particularly when initial therapy has failed and when second-line treatment is initiated.

It is critical to document any reduction in functional capacity, whether from 1 or multiple sources (eg, seizures alone, or seizures plus cognitive decline). Additionally, providers must accurately document the patient’s reported symptoms, interval history findings, and patient-kept home records (eg, headache or seizure diary). In addition, providers should refer patients to additional supportive care services including but not limited to: social work, case management, and in some cases private disability claim representation services. Table 3 summarizes tips for providers assisting patients filing for disability.

There are a handful of practices that providers should avoid. Importantly, providers cannot declare that patient is “disabled” by simply stating so in the medical record. While seemingly helpful, such letters have no bearing, as only the SSA has authority to make a disability determination. Second, providers should avoid use of vague language when describing patient symptoms (eg, “the patient is neurologically stable”). Finally, providers should avoid inserting incorrect or conflicting information in the medical record, such as copy-forwarding an outdated physical exam finding.

Subspecialty and Supportive Care Referrals Bolster Objective and Subjective Clinical Findings

Comprehensive documentation of a patient’s treatment and functional status can be pivotal for a successful disability application. Ultimately, constraints and scope of a typical neuro-oncology follow-up appointment make this immensely challenging if not impossible. The same specialists who assist in caring for patients with LGGs can also be a helpful resource in support of their disability claim. Referrals to supportive care services, including social work, case management, and the disabilities office are valuable. These services assist patients in appropriate completion of paperwork and application review. It is important to be aware that in the United States most hospital social workers and social service workers are not trained in developing a disability claim. Equally necessary are medical referrals in areas including but are not limited to neuropsychology, epilepsy, ophthalmology, physical medicine and rehabilitation, and vascular neurology.

Formal neuropsychological testing can quantify the degree of change from an individual’s expected baseline function, and provide evidence of occult cognitive decline. A 2003 study of 35 patients with LGG found that neuropsychological testing uncovered moderate or severe cognitive impairment in more than half of the subjects.¹⁹ These deficits were undetected by conventional neurologic examination and were not always self-reported. Neuropsychological evaluation is domain specific and can detail specific deficits.²⁰ This feature is important as many people with LGGs are not globally compromised but may have particular deficits that preclude resuming a previous occupational role. In a study of 44 patients with primary brain tumors, Dwan et al. reported that 86%–93% were classified as impaired at a test-specific level, 61%–73% were classified as impaired at a domain-specific level, and 32%–50% were classified as impaired at a global level²¹; however, studies comparing high- and LGG are limited.^22,23 One study of patients with LGG found that 55% had severe mental fatigue, 36% had major attention deficits, 19% had major executive function deficits, and 10% had major memory deficits.⁵ Such domain-specific findings may not significantly affect individuals performing well-learned and repetitive tasks but can have crucial consequences for a worker in a new job role. Additionally, neuropsychological testing can capture mood and behavioral changes. The reported frequency of depression in LGG patients is 15%–36%,^5,24 and 1 analysis found that 61% of patients with LGG had a mental health disorder, and 17% of patients with no history of a mental health disorder developed one within 12 months of diagnosis.²⁵ Patients were more than twice as likely to develop a mental health disorder if they underwent surgical resection or biopsy, or if they experienced seizures.²⁵ The SSA prefers testing within 1 year. However, testing upwards of 2 years within the medical change is appropriate for review. Changes in performance over time suggest that the individual would be unable to maintain the productivity expected by an employer. The key is to show that an impairment is expected to last 12 months or more. In summation, neuropsychological evaluation can support a disability application by providing evidence of global cognitive decline, focal deficits affecting specific work-related tasks, mood disorder refractory to treatment, and behavioral changes (such as disinhibition or poor anger control) that can be disruptive in a work setting.

Epilepsy is the most common initial symptom in LGG, experienced by 80% of patients.^26–28 A review by Englot et al. found that 29% of patients with supratentorial LGG who experienced seizures preoperatively continued to have refractory seizures following surgical resection,²⁹ and 9% showed no improvement or worsening after surgery.²⁸ Even among patients who achieve postoperative seizure freedom, nearly 90% remain on antiepileptic drugs.³⁰ The lack of seizure control in patients with LGG is associated with reductions in health-related quality of life, and the use of antiepileptic drugs in patients with LGG is associated with declines across multiple cognitive domains.^31,32 Clear documentation of seizures can be key to a disability claim. This includes seizure type, frequency, consecutive months affected, a detailed description of typical seizure appearance, documentation of antiepileptic drug adherence, and associated deficits. Ideally, this would also incorporate documentation of the physician witnessing an epileptic event, or an abnormal electroencephalogram recording. The SSA has specific criteria for the frequency of generalized and partial seizures in the setting of medication adherence to qualify for disability based on epilepsy (Table 4). Of note, inability to drive, whether secondary to seizures or other causes, does not itself guarantee a patient disability benefits. Referral to an epileptologist is useful for both optimal seizure management and accurate documentation.

Other key specialties that can aid in the documentation and description of chronic morbidity caused by a low-grade tumor include neuro-ophthalmology for visual field deficits, physical medicine and rehabilitation for functional decline, and vascular neurology for stroke treatment and outcomes. If the patient has specific symptoms related to or in conjunction with their diagnosis, recommendation for further testing or referral to other practices is beneficial first to the patient and the medical need. Social Security Disability is based upon the preponderance of medical evidence, not only the single diagnosis. Many patients with a LGG who are impacted by other conditions and/or side effects of the glioma receive benefits. Each case is individually determined by the medical evidence. Many healthcare plans, Medicare, or patient assistance programs cover costs; however, the copayment may be expensive.

Conclusions

Patients with WHO grade 2 glioma are often unable to return to work due to disease and treatment-related morbidities. These patients often face significant challenges when applying for disability benefits, not only because of neuropsychological symptoms, but because of how disability policy in the United States classifies tumors of the central nervous system. Ultimately, a successful disability application hinges on documentation of the comprehensive care that is provided. Although this application process may not apply to all geographical regions or healthcare systems, accurate and thorough documentation is always needed to show need of further care or compensation. Neuro-oncologists can help these patients by appropriate referrals to specific specialties, supportive care services, and by providing accurate and comprehensive documentation of their morbidity in the medical record. Importantly, providers should not “declare” that a patient is disabled, but document the evidence supporting why a patient is functionally impaired.

Funding

This work was not funded.

Acknowledgments

We thank Kyle Lawrence, Professional Relations Officer at the Roanoke Disability Determination Office, for his assistance in identifying key SSI specifications.

Authors’ Contributions

Lalanthica V. Yogendran: design and conceptualization of the report; acquisition of data; analysis and interpretation of data; drafting and revising the manuscript for intellectual content. Mark Rudolf: acquisition of data; analysis and interpretation of data; drafting and revising the manuscript for intellectual content. Drew Yeannakis: acquisition of data, analysis and interpretation, drafting and revising the manuscript for intellectual content. Kathleen Fuchs: analysis and interpretation, drafting and revising the manuscript for intellectual content. David Schiff: design and conceptualization of the report, analysis and interpretation, drafting and revising the manuscript for intellectual content.

Conflict of interest statement. Drew Yeannakis is founder of Disability Claims Representatives. The other authors declare no conflicts of interest.

References