Phagophobia

Speech Pathologists in the medical environment spend the vast majority of the day evaluating and treating patients with Dysphagia. While the underlying etiology and presenting symptoms may vary, the therapeutic methodologies embrace overlapping themes. Less commonly, SLP’s are asked to alleviate swallowing difficulties in individuals with no detectable physiologic pathology as evidenced by objective testing. These patients are likely suffering from a rare condition known as phagophobia.

 

Phagophobia is a word that comes from Greek phagein, “eat” and phobos, “fear”. It is a fear of swallowing, expressed in various symptoms without any apparent physical reason detectable by physical inspection and clinical analyses. Other terms used to define this disorder include: functional dysphagia, choking phobia, pseudodysphagia and sitophobia. The most common complaints of the condition include difficulty with swallow initiation, abnormal oral behaviors, repetitive lingual movements, complaints of throat pressure and globus (Barofsky and Fontaine, 1998). The by-product of these symptoms functionally manifest in food/texture avoidance, severe anxiety, weight loss and malnutrition. Phagophobia is registered in the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV). The disorder is more common in females vs. males. Onset can range across the lifespan from childhood to geriatric. While incidence rates are extremely low, many patients are incorrectly diagnosed with this disorder and are later found to have an organic source of symptoms. The need to perform a comprehensive, multidisciplinary assessment is paramount in order to ensure that patients receive a correct diagnosis and restorative plan of care.

 

Some have equated the symptoms of phagophobia with those of a conversion disorder. The premise being that an individual subconsciously transforms psychological conflicts revolving around the act of eating, into somatic symptoms. Researchers have begun to challenge the historic notions of the disorder with clinical studies targeting brain function in these individuals. One study investigated cortical activity in patients suffering from phagophobia. They were able to identify objective changes in brain activity specifically in the insula, dorsolateral prefrontal cortex, and the premotor cortex of the R. Hemisphere. These represent the areas of the brain responsible for proprioception and coordination of temporal sequences and volitional oral-phase swallowing behaviors. (Sunstrup, 2014). Another interesting study by Leopold looked at broadening the traditional patterns of swallow sequencing beyond three phases. Their theory was that clinicians should integrate pre-oral and preparatory phases as part of the swallowing continuum. These crucial precursors to swallowing involve complex somatosensory inputs that can translate into altered motor programming. Patients who sustain repetitive negative stimuli/experiences relating to the act of swallowing may develop this complex disorder that manifests as phagophobia. These studies provide clinicians with heightened insight into the complexity of the condition and offer some clear direction regarding treatment. Unfortunately, there is a paucity of clinical efficacy studies highlighting treatment strategies to rehabilitate swallowing function in these individuals. Those that exist have extremely small sample sizes with limited SLP involvement. The vast majority identified combined methods of cognitive behavioral therapy (CBT) and exposure therapy as being the most effective tools in resolving symptoms of phagophobia. Historically, the role of SLPs in managing this disorder has been questionable. How do we address these patients’ unique complaints in the context of normal/intact swallowing physiology? In many cases, SLPs have opted to refer these patients to a mental health specialist under the premise that skilled dysphagia services were contraindicated. Today, SLPs are reevaluating this position and joining forces with mental health providers to offer patients therapy that addresses underlying swallowing anxieties in concert with oral-motor retraining and exposures to challenge foods and textures. This approach carries enormous promise as an efficacious therapeutic modality that restores normal eating/swallowing behavior through both cognitive and sensorimotor retraining.

Ever wish you could ride on your patient’s shoulder?

We all know that the rise and influence of mobile technology is astounding. Our smart phones are extrinsically becoming an extension of ourselves. Our smart phones have allowed us to do everything from listen to specially tailored radio stations to monitoring our daily calories and movement patterns. The power of this technology is extraordinary. It allows for immediate and constant access to the services and interests that we select. It is not surprising that the power of mobile app technology has been well integrated into the healthcare arena. Patients are now able to monitor their heart rates, check their blood sugar levels and get daily reminders to take their medications. Preliminary research studies have validated that patients are more likely to demonstrate compliance and clinical advancement with use of this technology. It is a powerful vehicle to maintain strong contact between the patient and the medical provider. The most recent wave of applications has now taken residence within the world of skilled voice therapy.

 

iVoiceTherapy is designed to provide clinicians with a unique opportunity to customize a dedicated voice therapy home exercise regimen in an educational and engaging format. It is perfect for all individuals seeking restoration of speaking or singing voice quality. The application blends core elements that translate into optimal levels of patient compliance. They include, exercise programming/cueing, patient education and biofeedback. Clinicians are able to program various settings that will cue patients to perform specific exercises at designated times. Patients’ receive visual and auditory messages prompting the performance of tasks. After completion, each encounter is time dated and stamped for subsequent review with the treating clinician.

 

iVoiceTherapy offers patients the ability to view and explore a gallery of laryngeal pathologies as well as a broad array of educational materials designed to promote enhanced awareness and overall level of engagement. It allows patients to visualize the nature of their impairments as a way of reaffirming their commitment to voice restoration. Similarly, iVoiceTherapy employs a variety of aids to foster understanding and subsequent compliance with designated behaviors to improve laryngeal hygiene and posture.

 

The application is well suited for individuals who sustain acute or chronic voice changes associated with a broad array of diagnoses including traumatic vocal fold lesions, muscle tension dysphonia, Irritable larynx syndrome as well as professional and avocational singers. iVoiceTherapy is designed to be a physician and clinician driven platform that is specially tailored by the medical team. Clinicians are able to identify patients who would benefit from the regimen and suggest download from the iTunes store. Once downloaded, the application will be programmed by the treating clinician to ensure that all salient issues are addressed. Patients are instructed to perform exercises and document progress on a daily basis. This allows both parties to review progress during subsequent visits. The application is fluid in that it can be reprogrammed in order to assist with progression towards stated goals.

 

iVoiceTherapy also serves as an excellent desk reference for clinicians who encounter voice disorders less frequently.  The ear training and pathology labs permit familiarity with the most commonly encountered voice conditions.  Navigation through the Exercises tab provides auditory modeling of resonant voice therapy, paradoxical vocal fold movement strategies, cough suppression, flexibility/strengthening tasks and singing regimens.

 

iVoiceTherapy is currently available on the iTunes store for $12.99. It is optimized for an iPhone.  The application will also work on an iPad.

 

 

Motility Disorders in Dysphagia and Dysphonia

Speech Pathologists routinely encounter patients who present with well-defined voice and swallowing disturbances fueled by motility disorders. However, capturing objective information about esophageal function can often be difficult and frustrating for both the patient and the clinician. There are a variety of reasons for this: 1. There are a limited number of Otolaryngologists and Gastroenterologists that specialize in esophageal motility 2. Technology that evaluates these disorders is expensive and requires specialty-trained staff. 3. Motility testing is rarely housed within a dedicated voice and swallowing center which creates a challenge in multidisciplinary collaboration and communication.

Understanding the role of motility disorders in co-existing dysphagia and dysphonia is imperative. The esophagus is a muscular tube that extends from the neck to the abdomen and connects the back of the throat to the stomach. The upper and lower most segments are high-pressure sphincters that are tonically contracted at rest and provide protection against back flow of material. When a person swallows, the coordinated muscular contractions of the esophagus propel the food or fluid from the throat to the stomach. If the muscular contractions become disrupted or weak, patients may experience a variety of symptoms. Acid regurgitation may or may not be reported. Patients may come into the speech pathology clinic complaining of chronic, refractory cough, persistent dysphonia and laryngospasm, as of which may be directly fueled or exacerbated by motility disorders.

High resolution manometry is an invaluable tool that allows for detailed evaluation of pressure and motor function within the esophagus and can help in diagnosing complex disorders including: GERD/LPR, Hiatal Hernia, Nutcracker esophagus and Achalasia. pH testing similarly generates objective quantification of reflux events that occur over an extended period of time. Together, these tools provide the SLP with essential information that allows for the most accurate assessment and understanding of complex voice and swallowing disorders. It also allows for sound, mutli-disciplinary treatment planning in order to generate the most ideal clinical outcomes.  -Liza Blumenfeld

Alternative singing styles can be perfectly healthy

Recently I had the pleasure of working with a brilliant woman enjoying a successful singing career as an avante-garde performer with trademark vocal acrobatics and multiphonics.  Through experimentation, she taught herself to produce different tones simultaneously.  Once you listen to her unusual vocal style, you may assume misuse generated her referral.  Not so.  And I am certainly in no place to advise her to discontinue a performance style she is passionate about and has never left a shred of vocal pathology.  On the contrary, I was grateful to learn from her skill to share with other vocalists how to safely produce tones some may classify as screaming.  I have seen these produced in unhealthy manners with devastating after effects, namely hemorrhaging and vocal cord scarring.  A singing sample and her laryngeal videostroboscopy are provided below.  There two aspects of her endoscopy you may find intriguing.  First, her vocal cords are in pristine condition.  They are pearly white and exhibit healthy edges.  The edges of the vocal cords are generally where a pathology would arise from overuse due to repeated forceful closure.  Secondly, when I ask her to reproduce simultaneous pitches, you will notice she elicits two vibrations in different quadrants of the vocal cords.  Generally, we see one vibratory collision involving the entire true vocal cord.  I was grateful for this opportunity to work with such an energetic performer and explore the technical skill of her vocal style.  -Erin Walsh



Dysphagia Support Groups: Personal lessons learned

I have had the pleasure of working with individuals with dysphagia for almost 17 years. This experience has provided a plethora of learning opportunities that have transcended well beyond the clinical realm.

We as clinicians often focus all of our energies managing the physiologic effects of the disorder on our patients. We frequently lose sight of the emotional toll that is also involved. This is what prompted my interest in starting a dysphagia support group. The decision was sparked by an overt influx of patients with severe-profound dysphagia. Each of these patients relayed a story that reflected similar themes. Specifically, they spoke of the impact of dysphagia including altered quality of life, social isolation and depression. It became clear that as a clinician, I had a responsibility to provide a safe forum to share these thoughts and emotions with one another.

In preparation for my group, I developed a rigorous agenda that included multiple educational topics. I created nametags and fliers and started to pass them out to all of my patients. Unfortunately, I have limited space for the meeting, so I had to limit our initial session to 5 people including patients’ caregivers. I enthusiastically presented my plan to the group that included a long list of learning objectives. Upon completion of my spiel, I took note of the uncertainty of the group. This sparked learning opportunity #1: “Ask your group about their personal objectives”. Once I asked that basic question, the proverbial floodgates opened and I received extraordinary information. Learning opportunity #2: “Give the group time to develop a strong and safe relationship with one another”. Developing this intimacy is what allows the group to flourish. Patients need to speak honestly and candidly with each other. This is when you will see the true benefits of the forum as patients/caregivers graciously share their thoughts and emotions. Learning opportunity #3: “Keep the group small and choose the group wisely”. Initially, I had a vision of filling a small auditorium with a diverse grouping of patients with dysphagia: WRONG. In my opinion, the ideal group should include approx 5 patients with their family/caregiver. The small forum will allow for maximum participation and comfort. Similarly, patients should be somewhat homogenous regarding the severity of their disorder. Placing patients with mild dysphagia with others who are feeding tube dependent may inspire negative feelings for participants. Learning opportunity #4: “Our job is to facilitate and allow for honest, albeit uncomfortable discussion”. It’s easy to assume that support groups should resemble a “Kum Bah Yah,” that they should be soft and light and make everyone feel great. Unfortunately, the nature of dysphagia creates sad, uncomfortable and sometimes confrontational dialogue between participants. The role of the facilitator is to allow for respectful interplay with some redirection if the discussion becomes hurtful. I have seen wonderful results emerge from difficult interactions. Last but not least, learning opportunity #5: “If your boss says ‘no’ to your idea to host a group, keep fighting until he/she says ‘yes’”. I have found that there are creative ways to fund these groups. Our organization allows for billing hours into a community benefit cost center. This gives me a small amount of time to prepare for and host our meetings.

My sincere hope is that more and more clinicians will embark on this journey. Hosting groups is gut wrenching, however, it complements everything and we stand for. I pride myself on spending countless hours on advancing my education and clinical experience through courses and self-study. Ironically, I feel as if I have learned more about dysphagia and the patients’ I treat through this amazing group venue.

Best regards and Good Luck!
Liza Blumenfeld

Newsletter

Medicare Therapy Cap:  

What patients and clinical service providers need to know.

 

Background: The “Balanced Budget Act of 1997” imposed a $1,500 cap on outpatient therapy services. Section 4541 (c) and (d) of the act increased the financial limitation to no more than $1500 of the incurred expenses in a calendar year, and applied it to outpatient therapy services furnished in skilled nursing facilities, physician’s offices, home health agencies (Part B), skilled nursing facilities (Part B), in addition to private practice offices. This cap did not apply to hospital-based outpatient programs. The effective date of this $1,500 cap was January 1, 1999. A myriad of legal actions were successful in delaying implementation of the cap, until it cleared all barriers and went into effect on January 1st, 2006.  Later that year, congress generated legislation that created an exception process, thereby allowing continued care for specified patients that have exceeded the cap.

In early 2012, President Obama signed into law The Middle Class Tax Relief and Job Creation Act (H.R. 3630).  This legislation mandated that Hospital-based outpatient would be subject to the therapy cap process beginning in October, 2012.

Unless legislation is passed, Beginning on January 1st, 2013, the exceptions process will no longer be in effect and all outpatient therapy settings, excluding hospital based outpatient programs, will be forced to strictly adhere to the therapy cap provisions.

Understanding the current process:

The current therapy cap amount is $1800 for Speech Therapy and Physical Therapy combined. It is unclear as to why two disciplines share the cap amount. Through the exceptions process, patients may receive additional services in excess of the cap, if clinicians identify continued need for skilled therapy. In 2012, there are two exception processes: an automatic exception and a manual medical review process. The automatic exception to the therapy cap can be utilized to extend patients’ services from $1880 to $3700. No prior authorization is required, however, by continuing treatment, clinicians are attesting that the services billed are: 1. Qualified for the cap exception, 2. Are reasonable and necessary services that require the skills of a therapist and 3. Are justified by appropriate documentation in the medical record. The manual medical review process is required for all patients who reach $3700 in reimbursed services. The process will require that clinicians obtain advanced approval from Medicare. Criteria for medical review will be based on current medical review standards. Clinicians must comply with coverage, documentation and coding requirements set forth in the Medicare Benefit Manual (Publication 100-02, chapter 15, section 220) and the Medicare Administrative Contractor (MAC) local coverage determination (LCD) for their jurisdiction.

Patient Corner

What are the outpatient therapy limits for 2012?

  •  $1,880 for physical therapy (PT) and speech-language pathology (SLP) services combined
  • $1,880 for occupational therapy (OT) services 
After you pay your yearly deductible for Medicare Part B (Medical Insurance), Medicare pays its share (80%), and you pay your share (20%) of the cost for the therapy services. The Part B deductible is $140 for 2012. Medicare will pay its share for therapy services until the total amount paid by both you and Medicare reaches either one of the therapy cap limits. Amounts paid by you may include costs like the deductible and coinsurance.

What can I do if I need services that will go above the outpatient therapy cap amounts? 

  • You may qualify to get an exception to the therapy cap limits so that Medicare will continue to pay its share for your therapy services. Your therapist must document your need for medically-necessary services in your medical record, and your therapist’s billing office must indicate on your claim for services above the therapy cap that your outpatient therapy services are medically necessary. 
Even if your therapist provides documentation that your services were medically necessary, you might still have to pay for costs above the $1,880 therapy cap limits. If Medicare finds, at any time (even after your therapy services have been paid for), that the services above the therapy cap limits weren’t medically necessary, you might have to pay for the total cost of the services above the $1,880 therapy cap limits. 
Starting October 1, 2012, a Medicare contractor may review your medical records to check for medical necessity if you got outpatient therapy services in 2012 higher than these amounts:  $3,700 for PT and SLP combined.  $3,700 for OT 
Note: The Medicare contractor may conduct this review of your medical records before  you get any additional outpatient therapy services.

How can I find out if my therapy services will go above the therapy cap limits?

  • Ask your therapist’s billing office. If you get all your therapy in the same place, your therapist’s billing office will have the most up-to-date information and will know if your services will go above these limits.
  • Visit www.MyMedicare.gov to track your claims for therapy services. This website is Medicare’s secure online service for accessing your personal Medicare information.
  • Check your “Medicare Summary Notice” (MSN). This is the notice you get in the mail (usually every 3 months) that lists the services you had and the amount you may be billed.

What is an ABN?

  • An ABN is an Advanced Beneficiary Notification You may be asked by your clinical provider to sign this form prior to receipt of therapy services. The form states that in the event your services are not covered under medicare, you (The patient) will become responsible for payment. It is important to ensure that the provider includes a specific monetary amount that you would be billed. You should maintain a copy of this report for your personal records