Dysphagia in Children and Young Adults with Neuromuscular Disorders

By: Lenie van den Engel-Hoek, PhD

Speech Language Therapist and Researcher

Radboud Institute for Health Sciences, Department of Rehabilitation

Radboud University Medical Center, Nijmegen, The Netherlands

E-mail: Lenie.vandenEngel-Hoek@radboudumc.nl

 

Dysphagia in children and young adults with neuromuscular disorders (NMD) is an important clinical issue, resulting in malnutrition, dehydration and/or aspiration pneumonias. It may prohibit social participation and cause fear of choking. Therefore, assessment and treatment recommendations are important to improve safe and efficient feeding management.

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In children the most obvious sign of a neuromuscular disorder is hypotonia due to muscle weakness. Neuromuscular disorders are broadly subdivided in myopathies and neuropathies. The most common neuromuscular disorders in children are Duchenne muscular dystrophy (DMD) and spinal muscular atrophy (SMA), followed by hereditary motor sensory neuropathy and myotonic dystrophy (table 1) [1, 2].Table 1

Feeding disorders and dysphagia in children with neurodevelopmental disabilities vary widely. Children with cerebral palsy (CP) are at risk of aspiration of thin fluid [3, 4]. Recommendations for safe oral feeding in this patient group are traditionally focused on changing posture during feeding and thickening fluids. However, different patterns in swallowing problems were found in children with CP and children with neuromuscular disorders (NMD) [5]. In children with NMD malnutrition [6], impaired chewing performance and oral phase problems [7, 8], choking and post-swallow residue [8-10] are described. The oral motor problems are often complicated by structural impairments [11].

In the literature a wide range of swallowing problems in children with NMD is reported, related to different factors: (1) feeding problems in the neonatal period differ from childhood, because of different food substances or the use of utensils; (2) dysphagia can be observed in the oral and/or pharyngeal phase; (3) the stability or progressiveness of the disease differ from one disease to another; (4) bulbar involvement of oral or pharyngeal muscles or a combination varies among different NMD’s in childhood. To start appropriate rehabilitation in this patient group, mechanism based descriptions of the specific dysphagia are needed [12].

For example the dysphagia in children with SMA type II, described in our study [9], was assessed with surface EMG of the submental muscle group and a videofluoroscopic swallow study (VFSS) in two different postures. The dysphagia in SMA II is due to neurologic dysfunction of lower motor neurons of the cranial nerves from the brainstem, affecting both the force and the efficacy of the tongue and submental muscle group, in combination with a compensatory retracted head posture. These findings have led to an integrated treatment advice to adopt an adjusted posture during meals and to drink water after meals to prevent aspiration pneumonias.

The dysphagia in boys and (young) adults with DMD was assessed with sEMG of the submental muscle group and anterior tongue pressure during swallowing, quantitative muscle ultrasound (QMUS) and a VFSS, in 24 DMD patients, aged 5 – 40 years [10]. The participants were divided in three groups, based on the stage of their disease (9): early and late ambulatory stage (AS, N=6), early non-ambulatory stage (ENAS, N=7), and late non-ambulatory stage (LNAS, N=11).

Several studies have shown that changes in muscles, caused by neuromuscular disorders, can be detected by muscle ultrasound. With quantitative muscle ultrasound (QMUS) echo intensity and muscle thickness can be described and compared to normal values [13]. A study of our group revealed that QMUS was also feasible for oral muscles, i.e. m. digastricus, m. geniohyoid, and tongue muscles [14] (Figure 1). Echo intensity and thickness were described as Z-scores and used to quantify healthy and affected muscles.Figure 1

With QMUS it was shown that the echo intensity of the oral muscles in DMD gradually increased, starting in the AS group with the geniohyoid muscle. This increased echo intensity reflects the structural changes in muscles caused by DMD, related to muscle weakness [15]. The echo intensity of the oral muscles showed the same gradual involvement as observed in various skeletal muscles, but at a later onset. The first dystrophic change of the geniohyoid muscle was found in the AS, whereas dystrophic changes of the digastric muscles and the superior longitudinal tongue muscle were only seen in the LNAS. On the VFSS none of the patients showed direct aspiration. Nevertheless, oral phase problems and pharyngeal post-swallow residue were often observed, mostly in the LNAS and most frequently with thick liquid and solid food. These findings indicate that the complex function of swallowing, with involvement of the oral and pharyngeal muscles, is gradually affected over time. As a consequence, feeding and swallowing problems develop slowly, which requires dedicated professional attention already in the early stages of DMD.

Patients with SMA II and DMD rarely spontaneously complain about swallowing problems. Both diseases are slowly progressive and, as a consequence, patients may easily adapt their feeding and swallowing habits to their reduced oral strength without realizing this gradual change. This phenomenon has also been reported in adults with a progressive neuromuscular disorder [16]. It will lead to compensations (either adequate or inadequate) with possible positive or adverse side effects [17]. Because patients do not easily report their complaints, it hampers the possibility to benefit from a feeding and swallowing assessment and subsequent recommendations. It emphasizes the importance to pay attention to changing feeding and swallowing habits that may mask dysphagia already in the early stages of neuromuscular disorders.

In general, rehabilitation of patients with neuromuscular disorders is focused on both behavioral compensation and task-specific restorative training, taking into account the underlying pathophysiology. The primary aim in the rehabilitation of feeding and swallowing problems is to achieve safety, i.e. the prevention of choking and aspiration pneumonia. Essential differences between children with central and peripheral neurologic disorders need to be taken into account and call for intensive collaboration between the pediatric neurologist, rehabilitation physician and speech-language therapist. Choking in children with CP has a different pathophysiological origin than in children with a neuromuscular disorder and must, therefore, be treated differently. In children with CP, thickened liquids will prevent aspiration during swallowing, whereas in children with neuromuscular disorders thickened liquids are not recommended, because they aggravate post-swallow residue. Cleaning the oropharyngeal area with water after meals is important.

For SLTs working with children and young adults with a neuromuscular disorder, it is important to carefully consider the underlying mechanisms of oral and pharyngeal dysphagia to be able to provide mechanism-based recommendations for efficient and safe swallowing.

References

  1. Dubowitz, V., Muscle disorders in Childhood. 2000, London: W.B. Saunders Company LTD.
  2. Yang, M.L. and R.S. Finkel, Overview of paediatric neuromuscular disorders and related pulmonary issues: diagnostic and therapeutic considerations. Paediatr Respir Rev, 2010. 11(1): p. 9-17.
  3. Arvedson, J., et al., Silent aspiration prominent in children with dysphagia. Int.J.Pediatr.Otorhinolaryngol., 1994. 28(2-3): p. 173-181.
  4. Arvedson, J.C., Assessment of pediatric dysphagia and feeding disorders: clinical and instrumental approaches. Dev.Disabil.Res.Rev., 2008. 14(2): p. 118-127.
  5. van den Engel-Hoek, L., et al., Children With Central and Peripheral Neurologic Disorders Have Distinguishable Patterns of Dysphagia on Videofluoroscopic Swallow Study. J Child Neurol, 2013.
  6. Tilton, A.H., M.D. Miller, and V. Khoshoo, Nutrition and swallowing in pediatric neuromuscular patients. Semin.Pediatr.Neurol., 1998. 5(2): p. 106-115.
  7. Aloysius, A., et al., Swallowing difficulties in Duchenne muscular dystrophy: indications for feeding assessment and outcome of videofluroscopic swallow studies. Eur.J.Paediatr.Neurol., 2008. 12(3): p. 239-245.
  8. Pane, M., et al., Feeding problems and weight gain in Duchenne muscular dystrophy. Eur.J.Paediatr.Neurol., 2006. 10(5-6): p. 231-236.
  9. Engel-Hoek, L.v.d., et al., Dysphagia in spinal muscular atrophy type II: more than a bulbar problem? Neurology, 2009. 73(21): p. 1787-1791.
  10. van den Engel-Hoek, L., et al., Oral muscles are progressively affected in Duchenne muscular dystrophy: implications for dysphagia treatment. J Neurol, 2013. 260(5): p. 1295-303.
  11. Bagnall, A.K., M.A. Al-Muhaizea, and A.Y. Manzur, Feeding and speech difficulties in typical congenital Nemaline myopathy, in Advances in Speech-Language Pathology2006. p. 7-16.
  12. van der Wilt, G.J. and G.A. Zielhuis, Merging evidence-based and mechanism-based medicine. Lancet, 2008. 372(9638): p. 519-520.
  13. Pillen, S., et al., Quantitative skeletal muscle ultrasound: diagnostic value in childhood neuromuscular disease. Neuromuscul.Disord., 2007. 17(7): p. 509-516.
  14. van den Engel-Hoek, L., et al., Quantitative ultrasound of the tongue and submental muscles in children and young adults. Muscle Nerve, 2012. 46(1): p. 31-37.
  15. Jansen, M., et al., Quantitative muscle ultrasound is a promising longitudinal follow-up tool in Duchenne Muscular Dystrophy. Neuromuscul.Disord., 2012. 22(4): p. 306-317.
  16. Swart, B.d., Speech therapy in patients with neuromuscular disorders and Parkinson’s disease., 2006, Radboud University Nijmegen, the Netherlands.
  17. de Swart, B.J., et al., Ptosis aggravates dysphagia in oculopharyngeal muscular dystrophy. J.Neurol.Neurosurg.Psychiatry, 2006. 77(2): p. 266-268.

     

    About the Author

    Speech therapist and researcher at Radboud University Medical Centre (Nijmegen, The Netherlands) at the Department of Rehabilitation, Speech Language Therapy (children). Involved in clinical care and research in oral motor problems (speech and swallowing) in collaboration with 5 speech therapists for children and 10 speech therapist from the department for adults of the Radboudumc. Lecturer in Post-graduate courses with emphasis on feeding and swallowing problems in children. Expert in dysphagia in children. PhD Medical Sciences

    Link to Thesis:

    http://repository.ubn.ru.nl/bitstream/handle/2066/107646/107646.pdf?sequence=1

    Other publications:

    Eet- en drinkproblemen bij jonge kinderen (Feeding problems in infants) (Lenie van den Engel-Hoek, Leenke van Haaften, Marjo van Gerven, Sandra de Groot, Karen van Hulst) (4th edition, 2012).

    Articulatie. Willy Dijkstra-Buitendijk, Lenie van den Engel-Hoek (2013).

    Link to hospital webpage (Dutch only):

    radboudumc.nl/ZORG/AFDELINGEN/REVALIDATIE/LOGOPEDIE/Pages/Logopediekinderen.aspx

 

 

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The Hidden Dysphagia: Exploring Dysphagia in Acute Cervical Spinal Cord Injury

By: Jackie McRae BSc (Hons), MClinRes.; RegMRCSLT

In many textbooks, the signs of dysphagia are clear: weakness of the tongue or face, prolonged chewing, coughing after drinks, wet, gurgly voice, drooling (1). So when these signs are absent during a clinical swallow evaluation, we can presume the swallow is safe and start a patient on an oral diet. However, when the same patient goes on to develop an aspiration pneumonia a couple of days later, do you question your decision?

The clinical presentation of dysphagia for many people following cervical spinal cord injury is often subtle or absent. A small number of papers report the incidence of dysphagia to be between 30% to 74% (2-4). In the absence of brain injury, the cause appears to be multi-factorial with neurological, mechanical and respiratory causes. Surgery is often required to repair the bony damage to the spinal column and prevent further spinal cord damage. To access the upper cervical structures, surgeons will often operate via an anterior lateral approach, moving the laryngeal and pharyngeal musculature to the side. There is an established body of literature that confirms the impact of anterior cervical spinal fixation surgery on the neurological innervation of the larynx and pharynx (5, 6), and this is often seen in the presentation of vocal cord palsies and sensory impairment. The addition of metalwork to augment any bony breaks may also impinge into the pharynx causing disruption to epiglottic retroflexion. Complete spinal injuries to C6 will often require invasive ventilation via tracheostomy (7) although the effect is still debated (8), together with altered airflow from assisted ventilation, these add to the disruption of swallowing (9).

tower

For many people who sustain a cervical spinal cord injury they are relieved to be alive, despite needing a tracheostomy and ventilation. They will lack movement and sensation from the neck down but will be grateful for the ability of speech and language. Unlike many other neurological conditions dysphagia in this patient group does not present overtly. Silent aspiration is increasingly found to be a feature (10) and this will require further investigation to verify.

Although videofluoroscopy is often the gold standard assessment, there are challenges for this patient group as they may be bed-bound for many weeks and it does not offer the opportunity for sensory testing. We use Fiberoptic Endoscopic Evaluation of Swallowing (FEES) as the first assessment as it can be taken to the bedspace and be used in the current position of the patient. Our team have found it helpful to assess secretion management, pharyngeal sensation and airway sensitivity. Over the last twelve years, we have discovered undiagnosed vocal cord palsies, and identified poor and often absent sensation resulting in diffuse pooling of food, particularly of thick smooth consistencies, around the pharynx and even within the laryngeal vestibule, with no outward signs or wet voice. There were also definitive episodes of silent aspiration events with no changes to breathing pattern. This has been an education to my colleagues and I about the different type of swallowing problem spinal cord injury patients experience.

We perform a FEES on every cervical SCI patient, even if they have already started oral intake. Contrary to the usual order of consistencies we test, we have found that thin fluids tend to be better tolerated, with yoghurt and thickened fluids the worst due to poor pharyngeal clearance, resulting in potential late aspiration. Patients do better with more textured foods such as banana and biscuits, as it appears to provide more stimulation to the tongue and pharynx with better cohesion.

Apart from diet modification, these patients benefit from direct therapy which can be challenging as we are not targeting motor function as much as sensory function in the pharynx. Regular and intensive input is the key and can be a shared responsibility with carers and therapy staff. At our unit, we carry out a range of ‘swallow stimulation’ exercises targeting base of tongue and employing many of the principles of Facial Oral Tract Therapy (FOTT) REF often used with the head injury patient group.

flying gull

Another therapy aim is to ensure every tetraplegic patient has a reliable form of communication, with physical access to other communication aids being a challenge. Our team work closely to monitor patents whilst they achieve ventilation with cuffless tube which then allows for leak speech (11), as well as utilising other laryngeal functions such as cough and throat clearing.

Speech and Language Therapists/Pathologists have a unique role with these patients, using our specialist skills to identify areas of weakness and definite strengths. Consequently, it is important for us to take patients through a therapy programme that will allow them the pleasures of oral intake and speech.

small daisy

The reported experiences of many of my patients have directed me to designing the DAISY project – a study to identify Dysphagia following Acute cervIcal Spinal cord injurY. My research over the next three years will investigate the clinical decisions made by staff in relation to oral intake and tracheostomy management, as well as exploring the impact those decisions have on patients. My end goal is to develop a screening tool that will help to identify the risks of dysphagia in those with a cervical spinal cord injury. This will ensure prompt referral to SLT to provide targeted intervention and reduce the complications that many experience.

As one of my patients said “eating and drinking made things a little more normal again….”.

References

  1. Groher ME. Dysphagia: Diagnosis and Management: Butterworth-Heinemann; 1997 1997-03-02. 384 p.
  2. Shem K, Castillo K, Wong S, Chang J. Dysphagia in individuals with tetraplegia: incidence and risk factors. Journal of Spinal Cord Medicine. 2011;34(1):85-92.
  3. Chaw E, Shem K, Castillo K, Wong SL, Chang J. Dysphagia and Associated Respiratory Considerations in Cervical Spinal Cord Injury. Topics in Spinal Cord Injury Rehabilitation. 2012;18(4):291-9.
  4. Ramczykowski T, Gruening S, Gurr A, Muhr G, Horch C, Meindl R, et al. Aspiration pneumonia after spinal cord injury. Placement of PEG tubes as effective prevention. Unfallchirurg. 2012;115(5):427-32.
  5. Riley LH, 3rd, Vaccaro AR, Dettori JR, Hashimoto R. Postoperative dysphagia in anterior cervical spine surgery. Spine (Phila Pa 1976). 2010;35(9 Suppl):S76-85.
  6. Kalb S, Reis MT, Cowperthwaite MC, Fox DJ, Lefevre R, Theodore N, et al. Dysphagia after anterior cervical spine surgery: incidence and risk factors. World Neurosurgery. 2012;77(1):183-7.
  7. McCully BH, Fabricant L, Geraci T, Greenbaum A, Schreiber MA, Gordy SD. Complete cervical spinal cord injury above C6 predicts the need for tracheostomy. Am J Surg. 2014;207(5):664-9.
  8. Leder SB, Ross DA. Confirmation of No Causal Relationship Between Tracheotomy and Aspiration Status: A Direct Replication Study. Dysphagia. 2010;25(1):35-9.
  9. Brown CV, Hejl K, Mandaville AD, Chaney PE, Stevenson G, Smith C. Swallowing dysfunction after mechanical ventilation in trauma patients. Journal of Critical Care. 2011;26(1):108 e9-13.
  10. Shin JC, Yoo JH, Lee YS, Goo HR, Kim DH. Dysphagia in cervical spinal cord injury. Spinal Cord. 2011;49:1008-13.
  11. MacBean N, Ward E, Murdoch B, Cahill L, Solley M, Geraghty T, et al. Optimizing speech production in the ventilator-assisted individual following cervical spinal cord injury: a preliminary investigation. International Journal of Language & Communication Disorders. 2009;44(3):382-93.

About the Author

Jackie McRae qualified as a Speech and Language Therapist in UK over 20 years ago and has worked in many of the London Teaching Hospitals with a range of adult patients. Over the last 12 years, she has developed the clinical service at the London Spinal Cord Injury Centre and has been committed to promoting good practice with this group of patients through conference presentations and teachings. After completing a Masters in Clinical Research, she has been awarded a 3 year NIHR research fellowship, which will build on this work, aiming to improve the identification and management of dysphagia following acute cervical SCI.

To find out more about the DAISY project see www.daisyproject.info

Come to RISCI (Respiratory Information for Spinal Cord Injury) GBI Conference – London 10th October 2014
For more information see http://www.rnoh.nhs.uk/health-professionals/courses-conferences/the-12th-risci-scientific-meeting

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Here Comes the Pitch: Effortful Pitch Glide in Treatment of Dysphagia

By Keri Vasquez Miloro, MS, CAGS, CCC-SLP, BCS-S

 

Hitting the high note during the falsetto exercise has been widely practiced by Speech Pathologists for many years. It was introduced by Dr.Jeri Logemann (1997) and described as an exercise for laryngeal elevation because of its presumed effect of lifting the larynx comparable to the swallow (p. 210) [1]. The exercise consists of gliding up in pitch to reach a high, squeaky voice, then holding it for several seconds with effort. Currently no studies exist investigating the effects of the falsetto on improving laryngeal elevation though there are numerous studies in the voice literature regarding pitch tasks and laryngeal kinematics.

What Happens with Laryngeal Kinematics During Pitch Elevation?

Laryngeal kinematics have been evaluated during pitch elevation tasks using dynamic MRI. Laryngeal elevation was demonstrated with a high pitch task during production of /a/ [2]. In another study, an ascending humming task was shown to elicit laryngeal elevation, approximation of the larynx to hyoid and anterior and superior excursion of the hyoid [3]. These studies suggest pitch elevation tasks may facilitate laryngeal elevation.

What is the Relationship Between Pitch Elevation and Aspiration?

Recently, pitch elevation and its relationship between components of the swallow were studied in dysphagic patients by Dr. Maladraki et al (2011) [4]. The authors hypothesized patients with decreased vocal range and/or maximum fundamental frequency would predict worse penetration-aspiration and/or residue scores. Pitch elevation of the patients was assessed by acoustical and perceptual measurements (fundamental frequency and normal/abnormal rating, respectively) in which they were instructed to produce /ah/ gliding their voice up as high as possible. The Penetration-Aspiration [5] and Residue Scale Scores [6] were used during videoflouroscopy to objectively assess the swallow. The results of the study showed patients with more severe penetration-aspiration scores for thin liquids demonstrated abnormal, or reduced, pitch and lower maximum fundamental frequency. Furthermore lower maximum fundamental frequency was shown to be associated with significantly higher mean residue scores. This study illustrates the relationship between vocal range and protection of the airway.

Pharyngeal Squeeze Maneuver 

Another type of pitch task utilized is the pharyngeal squeeze maneuver (PSM) to assess and improve pharyngeal strength. It was originally developed by Bastian (1993) to assess pharyngeal constrictors during fiberoptic endoscopic evaluation of swallowing (FEES) [7]. The PSM is performed by generating a forceful and effortful “ee” sound to stimulate contraction of the pharyngeal constrictors in which strength of the musculature can be estimated.

The Genesis of the Effortful Pitch Glide 

Figure 1a. Laryngoscopic View of Hyopharynx at Rest

The PSM in conjunction with pitch elevation had been coupled to develop a potential new exercise known as the effortful pitch glide (EPG). My co-authors and I developed the EPG in attempts to target both laryngeal and pharyngeal muscles [8]. The EPG consisted of producing the /i/ sound at modal pitch, steadily increasing to the highest pitch and once reached, applying effort to generate a forceful “ee” sound.

Figure 1b. Laryngoscopic View of Hypopharynx During Effortful Pitch Glide

In a study by Pearson et al., (2013), muscle function MRI was used to evaluate activation of muscle contraction with the EPG in which the suprahyoids and longitudinal pharyngeal muscles exhibited significantly greater muscle activation compared to the swallow [9]. For our study, we hypothesized the biomechanics of the EPG would stimulate significantly greater excursions compared to the biomechanics of the swallow in the areas of anterior hyoid, superior hyoid, laryngeal elevation, hyolaryngeal approximation, lateral pharyngeal wall medialization and pharyngeal shortening.

Methods and Results of the Effortful Pitch Glide 

Our study included first teaching the EPG via laryngoscopy then assessment of the biomechanics of the EPG and the swallow with dynamic MRI in 11 healthy subjects (mean age = 25 years). Analysis of the biomechanics did not demonstrate greater excursion of the EPG than swallowing. Interestingly, 5 of the 6 excursions exhibited no statistically significant difference between the EPG and the swallow. These results indicated the measured biomechanics of the EPG were comparable to swallow regarding anterior hyoid, laryngeal elevation, hyolaryngeal excursion and lateral pharyngeal medialization.

Clinical Implications of the EPG and Pitch Elevation Tasks

The results from our study suggested the biomechanics of the EPG were similar to the biomechanics of deglutition. Multiple muscle functions pertinent to the swallow were shown to be elicited by the EPG consisting of laryngeal elevation, anterior hyoid and the longitudinal pharyngeal muscles, which are responsible for lifting the larynx and shortening the pharynx. There are some caveats to the use of the EPG as a potential exercise for these muscle functions. First, the possibility of vocal hyperfunction is a concern due to the effortful phonation produced with the EPG. Secondly, the effects of the EPG as an exercise are unknown as our study was conduced on healthy subjects without dysphagia. Therefore future studies are needed to examine these factors.

As highlighted earlier, pitch elevation has been shown to be associated with prediction of penetration-aspiration with thin liquids and residue. The pitch elevation in conjunction with the pharyngeal squeeze maneuver demonstrated similar kinematics compared to the swallow. Therefore the utility of pitch elevation tasks may be useful during clinical swallow evaluations as an informal assessment of dysphagia and as possible therapeutic benefits.

References

1. Logemann, J. (1997). Evaluation and treament of swallowing disorders (2nd ed.). Austin,TX: Pro-Ed.

2. Echternach, M., Traser, L., Markl, M., & Richter, B. (2011). Vocal tract configurations in male alto register functions. Journal of Voice : Official Journal of the Voice Foundation, 25(6), 670-677. doi:10.1016/j.jvoice.2010.09.008; 10.1016/j.jvoice.2010.09.008

3. Miller, N. A., Gregory, J. S., Semple, S. I., Aspden, R. M., Stollery, P. J., & Gilbert, F. J. (2012). The effects of humming and pitch on craniofacial and craniocervical morphology measured using MRI. Journal of Voice : Official Journal of the Voice Foundation, 26(1), 90-101. doi:10.1016/j.jvoice.2010.10.017; 10.1016/j.jvoice.2010.10.017

4. Malandraki, G. A., Hind, J. A., Gangnon, R., Logemann, J. A., & Robbins, J. (2011). The utility of pitch elevation in the evaluation of oropharyngeal dysphagia: Preliminary findings. American Journal of Speech-Language Pathology / American Speech-Language-Hearing Association, 20(4), 262-268. doi:10.1044/1058-0360(2011/10-0097); 10.1044/1058-0360(2011/10-0097)

5. Rosenbek, J.C., Robbins, J.A., Roecker, E.B., Coyle, J.L., & Wood J.L. (1996). A penetration-aspiration scale. Dysphagia,11(2), 93-8. doi:10.1007/BF00417897

6. Hind, J.A., Nicosia, M.A., Roecker, E.B., Carnes, M.L., & Robbins J. (2001).Comparison of effortful and noneffortful swallows in healthy middle-aged and older adults. Arch Phys Med Rehabil. 2001 Dec;82(12):1661-5.

7. Bastian, R. W. (1993). The videoendoscopic swallowing study: An alternative and partner to the videofluoroscopic swallowing study. Dysphagia, 8(4), 359-367.

8. Miloro, K.V., Langmore, S.E., & Pearson, W.G. Jr. (2014). Effortful Pitch Glide: A Potential New Exercise Evaluated by Dynamic MRI. J Speech Lang Hear Res. Feb 1. doi: 10.1044/2014_JSLHR-S-13-0168. [Epub ahead of print]

9. Pearson, W. G.,Jr, Hindson, D. F., Langmore, S. E., & Zumwalt, A. C. (2013). Evaluating swallowing muscles essential for hyolaryngeal elevation by using muscle functional magnetic resonance imaging. International Journal of Radiation Oncology, Biology, Physics, 85(3), 735-740. doi:10.1016/j.ijrobp.2012.07.2370; 10.1016/j.ijrobp.2012.07.2370

About the Author

Keri Vasquez Miloro, MS, CAGS, CCC-SLP, BCS-S, has over 13 years of experience working with adults in acute and sub-acute facilities specializing in the treatment and management of dysphagia. She recently earned the Certificate of Advanced Graduate Study from Boston University where she was mentored by Dr. Susan Langmore. Keri has been actively involved in research with areas of interest in dysphagia rehabilitation, head neck cancer and aspiration. Keri has presented at the Dysphagia Research Society’s annual conference and ASHA convention and taught dysphagia lectures at the graduate level. Keri is passionate about mentoring students and clinical fellows in which she has been the clinical instructor of over 25 students. She is a board certified specialist in swallowing and swallowing disorders and recipient of 5 awards for continuing education recognized by ASHA.

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Getting proper nutrition can be difficult when you have trouble swallowing. The inability to eat the right foods safely can lead to malnutrition. Maintaining proper nutritional intake is a key to overall good health and a high quality of life1. The National Dysphagia Diet2 defined the standard of what pureed food is, but offers little information on how to incorporate pureed foods into an active lifestyle.

The Challenge: Is it possible to eat healthy and well on a puree diet without using your blender or food processor? Can you still eat out? Yes! Let’s answer that challenge by offering breakfast, lunch, and dinner options for those on a modified diet.

Breakfast. Pre-made smoothies, available in the freezer case at most grocery stores, are a good option. Custom-made smoothies can be found at Whole Foods®, Einstein Bros.®, McDonalds®, Starbucks® or any juice bar. Smoothies that contain kale, beet or carrot juice add an important dose of phyto-nutrients. Don’t want a smoothie? Yogurt and Kafir are full of protein. If you want something warm, try a bowl of creamy wheat cereal or creamy oat bran cereal into which you’ve swirled smooth peanut butter and strawberry syrup. Smuckers® makes an entire line of smooth blueberry, mixed berry and strawberry syrups. green smoothie

Lunch. Whether you are eating at home or packing a lunch, a creamy pre-made soup and a homemade “safe” sandwich is a classic combination. Traditional sandwiches are not an option. Bread can be dangerous and difficult to swallow, but a modified “safe” sandwich can be attractive and delicious. One of my favorite safe sandwiches is an open face Mediterranean. Start with ¼ cup of tomato juice (or vegetable stock), add one scoop of instant food thickener and stir until thick. Place half of the thickened juice/stock on a plate or in the bottom of a plastic sandwich container. Top with a slice of smooth bread, like oat bran bread, crust removed. Spread the remaining thickened juice over the bread. Place dollops of pre-made hummus over the bread and smooth to the edges. Drizzle with olive oil. Cover and refrigerate at least 30 minutes then eat it with a fork. Smooth creamy soups are available right off the shelf at most grocery stores. If you have been prescribed thickened liquids, it may be necessary to thicken some creamy soups to the correct consistency with an instant food thickener. Safety first! Hummus-1

Dinner (eating out). When eating out, most restaurants will be happy to accommodate reasonable requests. Let your server (or the manager) know that you have a medical condition that may require simple modifications to your food. Being humble and gracious will go a long way! If you have brought your own pre-thickened water, let them know. Ask your server for menu suggestions. Consider making a meal from appetizers like salmon mousse or side dishes like cheese grits. Don’t be afraid to ask your favorite restaurant to use their blender or food processor to modify your meal, within reason. Most restaurants want your return business and good word-of-mouth. When a restaurant is accommodating to you, be sure leave them a positive review on the Internet.

Many restaurants have creamy soups on their menus: split pea, tomato and potato are usually safe options. If you are afraid that the soup may not be smooth enough, ask them to use their blender or food processor to make it safe.

  • At an Italian restaurant, order creamy polenta that has been swirled with pesto or Alfredo sauce.
  • At a steakhouse or other American restaurant, order a stuffed baked potato or an order of mashed potatoes with butter, sour cream and a smooth-melting cheese. Leave off the chives or green onions and make sure you potatoes are smooth. Grits are delicious eaten the same way. Restaurants like Cracker Barrel® and Outback Steak House® have a roasted sweet potato on the menu which you can make into a meal with the addition of butter and honey.
  • In a Mexican restaurant, order smooth guacamole and smooth refried beans with chile con queso which you will eat with a fork. Unfortunately, chips and salsa are unsafe for those on a puree diet. If you are on thickened liquids, ask the bartender to blend your Margarita to the correct consistency by using the packet of ThickenUp® Clear instant food thickener that you’ve brought with you.

tomato soupDinner (eating in). Eating well at home can be easy, even on a pureed diet. Grocery stores carry many “regular” foods that are smooth and ready to eat or to heat and serve. The best options are often in the refrigerated, dairy and freezer sections of the store. Look in the refrigerated section for hummus, guacamole, Greek yogurt dips, cheese spreads and flavored cream cheeses. Add these to the mashed potatoes that you find in the freezer section. The freezer section is also where you’ll find Stouffer’s® spinach souffle and Tabachnik® butternut squash souffle. The pasta aisle has smooth pesto, Alfredo sauce or cheese sauce that can be mixed into smooth soups for a change of pace.

Hungry for desert? Choose crème brulee (without fruit), panna cotta, salted caramel pudding or chocolate mousse. Cream pies are fine, too, just don’t eat the crust. Avoid chunky textured puddings like rice pudding and tapioca pudding. Whether eating out or at home, avoid any dessert that could leave a puddle of thin sauce on the plate, especially if you cannot tolerate mixed textures.

When you have the right strategies, some imagination and a little help, it is possible to eat well without using your blender or food processor!

References

1Cichero, Julie AY, Nutrition Journal. 2013, 12:54

2Clayton J, editor. The National Dysphagia Diet: Standardization for Optimal Care. American Dietetic Association; 2002.

About the Author

Laura Michael has a degree in Nutrition from the Ohio State University and over a decade of experience working in the healthcare food industry. She is the owner of Dysphagia Supplies Direct and Dysphagia Solutions where she offers hands-on training and education (with CEUs) for patients and healthcare professionals. She is the author of the training manual and cookbook: “Cooking for Someone with Swallowing Problems”. Laura is on the executive board of the National Foundation of Swallowing Disorders (www.swallowingdisorderfoundation.com). She is considered an expert on the National Dysphagia Diet and is a frequent public speaker for patients, caregivers and the professionals who support those with a swallowing disorder. LauraMichaels

“Cooking for Someone with Swallowing Problems” is $44.95 (includes shipping & handling). Visit her website: www.dysphagiasupplies.com

 

 

Examining Dysphagia from the Perspectives of Head and Neck Cancer Survivors and their Carers

By: Rebecca L. Nund, BSpPath (Hons), GCHEd, CPSP & Bena Cartmill, BSpPath (Hons), PhD, CPSP

Dysphagia Cafe

Courtesy of Rebecca Nund

Dysphagia in Head and Neck Cancer

Head and neck cancer (HNC) contributes considerably to the global cancer burden as it is the seventh most common cancer worldwide [1]. With improvements in techniques minimizing the associated morbidity of treatment, dysphagia is now considered one of the most relevant side effects among HNC survivors receiving (chemo)radiotherapy (CRT) [2] , with 63% to 100% of studies reporting ongoing swallowing problems between 1 and 5 years post-treatment. [3]. Despite what is known about the prevalence and physiological profile of dysphagia following CRT, there is little understanding of the key issues faced by HNC survivors post-treatment. In order to better meet their needs, it is important to understand survivors’ perspectives of what it is like to live with and adjust to dysphagia post-treatment.

How do Head and Neck Cancer Survivors Experience Dysphagia?

Recent national and international research, including work from our tertiary healthcare center, has demonstrated that dysphagia has a multifactorial and complex impact on the lives of HNC survivors [7-9]. As expected, interviews with HNC survivors have noted a wide range of physical changes impacting on swallowing ability including dry mouth, changes in taste, and oral and pharyngeal sensitivity:

“The lack of saliva … the dry mouth … it affects everything … eating, swallowing, talking, everything.”

In addition to the physiological changes, HNC survivors report a number of emotional responses to their post-CRT eating habits as well as effects on their self-image [7]. Emotions expressed by HNC survivors include frustration, anger, anxiety, depression, envy, loss, fear, defeat, and embarrassment.

My diet has changed a lot now and that really ****** me off

“You dread it, you dread having something to eat…it hurts so much”

Survivors also report changes to how they feel about food and eating. They commonly describe that eating is no longer enjoyable or pleasurable which leads to a lack of social occasion and a sense of no longer bothering to eat [7-9].

“The only satisfaction I get from my food on my plate is that I won’t die from hunger. That’s the only satisfaction that I get.”

“[At] work … blokes will go and have a feed, I won’t eat in front of them. I’ll go and sit in the van myself and eat just in case I choke or something … it’s embarrassing.”

How do Head and Neck Cancer Survivors Adjust to Dysphagia?

Dysphagia Cafe

Courtesy of Rebecca Nund

A number of studies have reported long-term dysphagia up to 10 years post-treatment [4,6,10,11], despite the mainstay of HNC research focusing on improving cancer cure and minimizing acute toxicity. Unfortunately it is acknowledged internationally that clinicians are unable to meet current survivor demands regarding dysphagia management across the continuum of care [12-14]. This is reflected in the nature of healthcare services that are generally concentrated during and within the first 3 months of treatment, with limited supportive services available in the post-treatment phase. Research conducted at our center has found HNC survivors desire ongoing follow-up from health professionals in regards to dysphagia throughout the post-treatment period [15].

“When you’ve had your radiation, you are told [to] come back in six weeks, you go home and that six weeks is the worst six weeks out of everything and you haven’t got that support then.”

“Follow ups … we get oncology appointments … I think we should have one for the eating … on a regular basis.”

Additionally, HNC survivors report feeling unprepared for the degree and duration of the side effects on swallowing function, noting that the challenges of living with dysphagia require practical and emotional adjustments, as well as a reliance on family, friends and alternative therapies [15].

“I didn’t know it was going to be this hard. I just thought I would go home and have a normal meal … a normal life.”

“It was like a competition for me … two years after treatment you are still trying to cope with your eating. You got to be a champion to do that.”

“I ate because [carer] insisted that I eat.”

How do Family Carers Experience Dysphagia?

Given that eating and mealtimes are profoundly social events that sustain not only our physiological needs but also our social and emotional life, the potential for dysphagia to also impact on the life of the carer is great. In novel work from our centre, we have found that dysphagia profoundly disrupts the life of the carer in regards to meal preparation, family life, socializing and eating out, and evokes numerous emotional responses [16].

“I have to make an impaired throat meal and, as much as possible, a standard meal for me.”

“We [don’t] sit at the table … there is less talk … less other things happening … because we don’t want to go anywhere because he can’t eat.”

“How do I cope with this? What do I do to make it so he doesn’t choke on his food?”

Carers also feel unprepared for the pervasive effects of dysphagia. They need to make adjustments and adapt to their partner’s dysphagia in an environment where there are limited formal supports [16].

“It’s tough stuff after the treatment finishes…after that it’s up to the home carer and they haven’t been there before, they’ve got no expertise and to a great extent no technical information either.”

Implications for Clinical Practice

Dysphagia Cafe

Courtesy of Rebecca Nund

These insights from the survivors and their carers indicates that not only is more contact with services required, but a greater diversity of services is needed to assist them to adapt to the complex and multifactorial changes associated with living with dysphagia. As highlighted in our recent publication in the International Journal of Language and Communication Disorders, these issues cannot simply be solved with a greater number of speech-language pathologists but rather requires the consideration of innovative service delivery methods [15]. These could include but are not limited to:

  • Patient monitoring via technology
  • Monitoring distress to facilitate early referral
  • Addition of other allied health members to dysphagia management (e.g., psychology)
  • Running skill building sessions (e.g., meal preparation)
  • Family-centered care approach (e.g., including carer in dysphagia management)
  • Peer support
  • Facilitating links to community and social networks

We are working on the need to develop and evaluate these and other novel strategies to assess and manage the complex effects of dysphagia, beyond the physical changes, to better meet the needs of HNC survivors and to enhance post-treatment support. There also needs to be a greater recognition of the essential role of carers in supporting people with dysphagia and they should be viewed as co-partners in dysphagia management.

Book Cover

More detailed information regarding survivorship issues for people with head and neck cancer and their carer can be found in a new chapter in the second edition of Head and Neck Cancer: Treatment, Rehabilitation and Outcomes available at:

https://www.pluralpublishing.com/publication_hanc2e.htm

References

1. Ferlay J, Soerjomataram I, Ervik M, Dikshit R, Eser S, Mathers C, Rebelo M, Parkin DM, Forman D, Bray F (2014) GLOBOCAN 2012 v1.0 Cancer Incidence and mortality worldwide. International Agency for Research on Cancer. http://globocan.iarc.fr. Accessed 11/02/2013

2. Christianen, M, Schilstra, C, Beetz, I, Muijs, CT, Chouvalova, O, Burlage, FR, et al. (2012). Predictive modelling for swallowing dysfunction after primary (chemo)radiation: results of a prospective observational study. Radiotherapy and Oncology 105, 107-114.

3. Wall LR, Cartmill B, Ward EC, Hill AJ (2013) Physiological changes to the swallowing mechanism following (chemo)radiotherapy for head and neck cancer: A systematic review. Dysphagia 28 (4):481-493. doi:10.1007/s00455-013-9491-8

4. Cartmill B, Cornwell P, Ward EC, Davidson W, Porceddu SV (2012) Long-term functional outcomes and patient perspective following altered fractionation radiotherapy with concomitant boost for oropharyngeal cancer. Dysphagia 27 (4):481-490. doi:10.1007/s00455-012-9394-0

5. Hutcheson KA, Lewin JS, Barringer DA, Lisec A, Gunn GB, Moore MWS, Holsinger FC (2012) Late dysphagia after radiotherapy-based treatment of head and neck cancer. Cancer 118 (23):5793-5799. doi:10.1002/cncr.27631

6. van den Berg MGA, Rütten H, Rasmussen-Conrad EL, Knuijt S, Takes RP, van Herpen CML, Wanten GJA, Kaanders JHAM, Merkx MAW (2014) Nutritional status, food intake, and dysphagia in long-term survivors with head and neck cancer treated with chemoradiotherapy: A cross-sectional study. Head & Neck. doi:10.1002/hed.23265

7. Nund RL, Ward EC, Scarinci NA, Cartmill B, Kuipers P, Porceddu SV (2013) The lived experience of dysphagia following non-surgical treatment for head and neck cancer. International Journal of Speech-Language Pathology. doi:10.3109/17549507.2013.861869

8. McQuestion M, Fitch M, Howell D (2011) The changed meaning of food: Physical, social and emotional loss for patients having received radiation treatment for head and neck cancer. European Journal of Oncology Nursing 15 (2):145-151. doi:10.1016/j.ejon.2010.07.006

9. Larsson M, Hedelin B, Athlin E (2003) Lived experiences of eating problems for patients with head and neck cancer during radiotherapy. Journal of Clinical Nursing 12 (4):562-570

10. Caudell JJ, Schaner PE, Meredith RF, Locher JL, Nabell LM, Carroll WR, Magnuson JS, Spencer SA, Bonner JA (2009) Factors associated with long-term dysphagia after definitive radiotherapy for locally advanced head-and-neck cancer. International Journal of Radiation Oncology Biology Physics 73 (2):410-415. doi:10.1016/j.ijrobp.2008.04.048

11. Mehanna HM, Morton RP (2006) Deterioration in quality-of-life of late (10-year) survivors of head and neck cancer. Clinical Otolaryngology 31 (3):204-211. doi:10.1111/j.1749-4486.2006.01188.x

12. Krisciunas GP, Sokoloff W, Stepas K, Langmore SE (2012) Survey of usual practice: Dysphagia therapy in head and neck cancer patients. Dysphagia 27 (4):538-549. doi:10.1007/s00455-012-9404-2

13. Roe JWG, Carding PN, Rhys-Evans PH, Newbold KL, Harrington KJ, Nutting CM (2012) Assessment and management of dysphagia in patients with head and neck cancer who receive radiotherapy in the United Kingdom – a web-based survey. Oral Oncology 48 (4):343-348. doi:10.1016/j.oraloncology.2011.11.003

14. Maclean J, Ward EC, Findlay M, Rees G (2013) Dysphagia and nutritional management in Australian and New Zealand head and neck cancer centres. Dysphagia Research Society 28:601

15. Nund RL, Ward EC, Scarinci N, Cartmill B, Kuipers P, Porceddu SV (2014) Survivors’ experiences of dysphagia-related services following head and neck cancer: Implications for clinical practice. International Journal of Language and Communication Disorders. doi: 10.1111/1460-6984.12071

16. Nund RL, Ward EC, Scarinci N, Cartmill B, Kuipers P, Porceddu SV (in-press) Carers’ experiences of dysphagia in people treated for head and neck cancer: A qualitative study. Dysphagia. doi:10.1007/s00455-014-9527-8

About the Authors

Rebecca is a speech-language pathologist who is currently completing her doctoral studies at The University of Queensland in Brisbane, Australia under the supervision of Prof Elizabeth Ward, Dr Nerina Scarinci, and Dr Bena Cartmill and in collaboration with A/Prof Pim Kuipers and A/Prof Sandro Porceddu. She is exploring the lived experience of dysphagia associated with curative, non-surgical management for head and neck cancer from the perspective of the head and neck cancer survivor and their carer. Rebecca has a special interest in the International Classification of Functioning, Disability and Health (ICF) and its application to swallowing disability and third-party disability.

Bena is an advanced speech-language pathologist (oncology) who has provided swallowing and communication management to head and neck cancer survivors over the past 10 years at the Princess Alexandra Hospital in Brisbane, Australia. She completed her PhD in 2012 examining the swallowing, nutrition and functional outcomes of head and neck cancer patients following non-surgical treatment. Her current research interests include improving the service delivery and rehabilitation needs of head and neck cancer patients during and following treatment.

 

 

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