Enhancing Access to Care for Patients After Total Laryngectomy

Enhancing Access to Care for Patients After Total Laryngectomy was a topic discussed on a recent webinar and was attended by over 200 healthcare providers. Now available for on-demand viewing, this webinar had Dr. Gina Jefferson who discusses her perspective and research findings that identifies barriers and key learnings to improve access to care. Additionally, Keely Bill, MS, CCC-SLP, shares how she started a clinic to provide rural access to care to patients following a total laryngectomy and improve rehabilitative outcomes. Additionally, Nicole Goodwin, MS, CCC-SLP, shares insights into clinical billing in order to provide access to a voice prosthesis and thus access to tracheoesophageal speech following total laryngectomy.

Ensuring access to care for patients following a total laryngectomy (TL) is crucial for their recovery, rehabilitation, and overall quality of life. Barriers such as geography, socioeconomic status, and cultural differences can affect patients’ ability to receive timely and appropriate care. For instance, individuals may face long travel times to specialized centers with clinical expertise to manage total laryngectomy voice restoration and pulmonary needs. Some patients may not have limited access to transportation for appointments. For those who have undergone TL, access not only influences their cancer treatment but also impacts essential aspects like alaryngeal voice restoration, swallowing, and pulmonary rehabilitation—all key contributors to post-surgical wellbeing and the ability to return to daily activities and work.

According to the World Health Organization (WHO) the social determinants of health can be defined as the conditions in which people are born, grow, live, work and age, as well as their access to power, money, and resources. These factors can significantly influence health equality. When delivering care to someone before or after total laryngectomy, these factors can impact how we can best deliver care to these individuals especially as individuals who have had a total laryngectomy experience a range of physical, emotional, and social changes. In head and neck cancer care, best practice is a multi-disciplinary team including head neck surgery, radiation oncology, medical oncology, nutrition, social work, and speech language pathology. Additionally, patients need access to durable medical equipment such as heat and moisture exchangers (HMEs), adhesives, and an electrolarynx for the rest of their lives. For patients who speak with a tracheoesophageal voice prosthesis, they also will need access to a new device approximately every 2-3 months in addition to access to a speech language pathologist or other healthcare providers who have been trained to manage and replace a voice prosthesis. Recognizing the potential barriers to care as well as the individual needs of the patient can help us determine patient centric solutions to improve their overall access to quality care. 

Loehn et al. (2010) examined barriers to receiving head and neck cancer care after Hurricane Katrina, which reduced New Orleans hospital capacity by 80% and safety-net clinics by 75%. The study found that clinical, demographic, and socioeconomic factors did not affect access, but limited transportation negatively impacted care for early-stage cancer patients resulting in delays in diagnosis to treatment. Importantly, many who perceived a lack of care said they would have sought treatment more timely if care was more optimally accessible. This highlights the necessity for disaster preparedness and better care delivery. The authors concluded that efficient, accessible, and timely care in the community is vital to providing access to care for many patients.

Palmer et al. (2024) analyzed tracheoesophageal puncture (TEP) outcomes in patients who underwent total laryngectomy at a tertiary safety net hospital between 2013 and 2020. The study focuses on the socioeconomic, demographic, and treatment-related factors influencing TEP outcomes. In comparison to previous studies describing success communication with a TEP, this study showed that only 53.4% of patients used the voice prosthesis while other studies demonstrate a success rate of between 78-95%.  This demonstrated a higher rate of TEP abandonment in predominantly socioeconomically depressed populations. In this cohort, more extensive counseling was provided before a secondary TEP resulting in a higher use of the TEP for communication purposes. This demonstrates the need for extensive counseling prior to primary or secondary TEP as well as patient expectation setting and planning for access to a healthcare provider who can provide rehabilitation after undergoing a TEP.  

Strategies to Improve Access to Care:

• Patient Navigation: Nurse navigators or case managers coordinate care, appointments, and access to necessary supplies.

• Support Groups: Community and online groups provide connection, shared experiences, and emotional support.

• Primary Care Collaboration: Training local providers to recognize and address TL patient needs improves early intervention and referrals.

• Community Care: Access to care in the community can reduce the burden of travel time and can provide access to rehabilitative care

Improving post-laryngectomy care requires addressing access barriers, enhancing rehabilitation services, and streamlining supply and reimbursement processes. Effective collaboration among hospital staff, local providers, and comprehensive education are essential for supporting patients.

References
1. Hilgers FJ, Schouwenburg PF. A new low-resistance, self-retaining prosthesis (Provox) for voice rehabilitation after total laryngectomy. Laryngoscope. 1990;100(11):1202-7.
2. Lewin JS, Baumgart LM, Barrow MP, Hutcheson KA. Device Life of the Tracheoesophageal Voice Prosthesis Revisited. JAMA Otolaryngol Head Neck Surg. 2017 Jan 1;143(1):65-71. doi: 10.1001/jamaoto.2016.2771. PMID: 27684464; PMCID: PMC5322740.
3. Loehn B, Pou AM, Nuss DW, Tenney J, McWhorter A, DiLeo M, Kakade AC, Walvekar RR. Factors affecting access to head and neck cancer care after a natural disaster: a post-Hurricane Katrina survey. Head Neck. 2011 Jan;33(1):37-44. doi: 10.1002/hed.21393. PMID: 20848415.
4. Longobardi Y, D'Alatri L, Brandi VF, Mari G, Marenda ME, Marchese MR, Galli J, Parrilla C. Automatic speaking valve in tracheo-esophageal speech: treatment proposal for a widespread usage. Eur Arch Otorhinolaryngol. 2024 Jun;281(6):3197-3205. doi: 10.1007/s00405-024-08605-0. Epub 2024 Apr 3. PMID: 38568297.
5. Palmer TT, Hopper SJ, Murray MC, Ho J, Oglesby KR, Sanford P, Paul O, Alston JS, Jefferson GD, Jackson LL, Kane AC. Tracheoesophageal Puncture Outcomes at a Safety Net Hospital. Otolaryngol Head Neck Surg. 2025 Feb;172(2):702-705. doi: 10.1002/ohn.1095. Epub 2024 Dec 18. PMID: 39692260.

Social Determinants of Health - Healthy People 2030 | odphp.health.gov

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