An investigation of the effect of laryngectomy on swallowing and QOL NWL Research symposium – Sept 21st 2016 Dr Margaret Coffey Mr Neil Tolley Professor Mary Hickson Mr David Howard

Laryngeal cancer 2,315 new cases diagnosed in UK 4 in 10 receive major surgical resection 62% survive for 10 years or more Causes: Smoking, alcohol, occupational exposure Cancer Research UK 2013 18th most common cancer in the UK

Breathing after laryngectomy?

Voicing after laryngectomy

Swallowing after laryngectomy

Aim To investigate the effect of laryngectomy on oral intake, self reported dysphagia and quality of life

Functional Oral Intake Scale (FOIS) Crary et al 2005 Methods Oral intake Functional Oral Intake Scale (FOIS) Crary et al 2005 Self report dysphagia Any change in ability to swallow? Maclean et al 2009 QOL UOW QOL v4 – HNC general QOL Rogers et al 2002 MDADI – HNC specific to swallow Chen et al 2001 Fois validated 7 item scale - describes patients actual daily intake of food and liquid

Results - Demographics n 50 82% male, 18% female Median age - 66 years (range 43 - 85 ) Median time since surgery - 6.0 years (range 4 mths - 29 years) 50 subjects, 82% of sample were male, 18% were female. Median age 66 years (range 43-85). Median time since surgery 6.9 years (range 4 mths-29 years).

Results - FOIS 7 Oral intake with no restrictions 11 (22%) FOIS diet level n 1 No oral intake 2 Tube dependent with minimal inconsistent oral intake 3 Tube supplements with consistent oral intake 4 Single consistency oral intake 1 (2%) 5 Multiple consistency oral intake with special preparation 18 (36%) 6 Oral intake avoiding specific food or liquid items 20 (40%) 7 Oral intake with no restrictions 11 (22%) No patient dependent on enteral feeding 78% experienced some restriction to oral intake

Results – self report of dysphagia 78% (n - 39) experienced swallowing difficulty after surgery “Takes a hell of a long time to eat, I’m always hungry” “I’m too embarrassed to eat with others, my food has to be mushy and it looks like baby food” “We have no social life and I feel bad eating when he has so much trouble”

Social emotional composite score Results – UOW QOL v4 Composite score Physical composite score Social emotional composite score Median score (min-max) 82.5 (2.91-195.41) 78.91 (31.66-100) 68.8 (30.0-100) 3 most important domains over the past 7 days Speech, swallow and activity Thematic analysis of issues not addressed – 6 categories Social Physical Stoma Communication Swallowing Other Median composite score higher than that in Robertson et al 2011 (larger study) Domains reflect those of Robertson et al 2011 Differ to older sti=udies Villasea et al 2005 and Kazi et al 2007 (Speech, appearance and activity) Social I wouldn’t go to a concert, afraid of coughing

QOL issues not addressed Physical I get teased about not swimming Stoma Issues with mucous not covered Social I wouldn’t go to a concert, so afraid of coughing Physical I get teased about not swimming

QOL issues not addressed Communication It bothers me when people turn around to look at me Swallowing Family worry in case I’m choking Other Laughing sounds strange Other I feel suicidal when my prosthesis leaks Other Laughing sounds strange Swallowing Family worry in case I’m choking

Results - MDADI 53% took longer to swallow Emotional score Functional score Physical score Global score Total score Median score (min-max) 73.3 (36.7-100) 76 (28-100) 68.8 (30-100) 80 (20-100) 71(33.7-100) Consistent with Robertson et al 2011, global score higher in this study Lower scores than Kazi et al 2006 53% took longer to swallow Commented that they were unlikely to cough on liquids unless voice prosthesis was leaking

Conclusions Swallowing difficulty is an issue for patients after laryngectomy Frequently used HNC QOL scales fail to address impairments in functioning specific to laryngectomy Need for a QOL scale specific to laryngectomy

Acknowledgements Laryngectomy patients Supervisors Dr Mary Hickson, Professor of Dietetics, Plymouth University Mr Neil Tolley, Consultant Otolaryngologist, ICHT Professor David Howard, Consultant Head and Neck Surgeon Professor Gary Frost, Imperial College London Collaborators Professor Susan Langmore, Boston University Medical Centre Professor Stephen Leder, Yale University Medical Centre