Symptom Indices for Dysphagia Assessment and Management

Abstract

Dysphagia is a symptom and not a disease. The symptom can range from the feeling of a simple lump in the throat with no objective physiologic findings of a swallowing impairment to profound dysfunction necessitating complete reliance on non-oral nutrition via tube feeding. Etiology may offer some indication of the expected level of dysfunction but even in patients suffering the same underlying disease or disorder, symptoms do not always correlate with the level of impairment. Clinicians need to be able to quantify the severity of dysphagia and estimate the effect on quality of life that this symptom causes. Patient reported outcome measures (PROMs) offer a reproducible, safe, and cost-effective method of estimating dysphagia severity, monitoring change over time, and assessing response to treatment. In order to improve the treatment of dysphagia, we must first be able to measure the severity of the symptom. This purpose of this chapter is to review some of the currently available PROMs in the assessment and management of dysphagia and reflux disease.

Appendix: Dysphagia and GER Indices

Eating Assessment Tool-10 (Belafsky et al. [17])

Patient scores each statement “To what extent are these scenarios problematic for you?”

0  =  no problem, 4  =  severe problem

• 1. My swallowing problem has caused me to lose weight.

• 2. My swallowing problem interferes with my ability to go out for meals.

• 3. Swallowing liquids takes extra effort.

• 4. Swallowing solids takes extra effort.

• 5. Swallowing pills takes extra effort.

• 6. Swallowing is painful.

• 7. The pleasure of eating is affected by my swallowing.

• 8. When I swallow food sticks in my throat.

• 9. I cough when I eat.

• 10. Swallowing is stressful.

MD Anderson Dysphagia Inventory (Chen et al. [18])

The following statements have been made by people who have problems with their swallowing. Some of the statement may apply to you. Please read each statement and circle the response which best reflects your experience in the past week.

(Response options are strongly agree, agree, no opinion, disagree, or strongly disagree).

My swallowing ability limits my day-to-day activities.

• E2. I am embarrassed by my eating habits.

• F1. People have difficulty cooking for me.

• P2. Swallowing is more difficult at the end of the day.

• E7. I do not feel self-conscious when I eat.

• E4. I am upset by my swallowing problem.

• P6. Swallowing takes great effort.

• E5. I do not go out because of my swallowing problem.

• F5. My swallowing difficulty has caused me to lose income.

• P7. It takes me longer to eat because of my swallowing problem.

• P3. People ask me “Why can’t you eat that?”

• E3. Other people are irritated by my eating problem.

• P8. I cough when I try to drink liquids.

• F3. My swallowing problems limit my social and personal life.

• F2. I feel free to go out to eat with my friends, neighbours, and relatives.

• P5. I limit my food intake because of my swallowing difficulty.

• P1. I cannot maintain my weight because of my swallowing problem.

• E6. I have low self-esteem because of my swallowing problem.

• P4. I feel that I am swallowing a huge amount of food.

• F4. I feel excluded because of my eating habits.

First question scored alone. E  =  emotional, F  =  functional, P  =  physical. Items added together for each domain and then mean score of each scale multiplied by 20 to give range 0–100 for each scale (higher scores show better QOL).

Sydney Swallowing Questionnaire (Wallace et al. [19])

Patient scores each statement on a 100 mm VAS scale with left end  =  no difficulty at all and right end  =  unable to swallow at all.

• 1. How much difficulty do you have swallowing at present?

• 2. How much difficulty do you have swallowing thin liquids? (e.g., tea, soft drink, beer, coffee)

• 3. How much difficulty do you have swallowing thick liquids? (e.g., milkshakes, soups, custard)

• 4. How much difficulty do you have swallowing soft foods? (e.g., mornays, scrambled egg, mashed potato)

• 5. How much difficulty do you have swallowing hard foods? (e.g., steak, raw fruit, raw vegetables)

• 6. How much difficulty do you have swallowing dry foods? (e.g., bread, biscuits, nuts)

• 7. Do you have any difficulty swallowing your saliva?

• 8. Do you have any difficulty starting a swallow? (never—occurs every time I swallow)

• 9. Do you ever have a feeling of food getting stuck in your throat when you swallow? (never—occurs every time I swallow)

• 10. Do you ever cough or choke when swallowing solid foods? (never—occurs every time I swallow)

• 11. Do you ever cough or choke when swallowing liquids? (never—occurs every time I drink)

• 12. How long does it take you to eat an average meal? Less than 15 min/15–30 min/30–45 min/45–60 min/>60 min/unable to swallow

• 13. When you swallow does food or liquid go up behind your nose or come out of your nose? (never—occurs every time I swallow)

• 14. Do you ever need to swallow more than once for your food to go down? (never—occurs every time)

• 15. Do you ever cough up or spit out food or liquids during a meal? (never—occurs every time)

• 16. How do you rate the severity of your swallowing problem today? (no problem—extremely severe problem)

• 17. How much does your swallowing problem interfere with your enjoyment or quality of life? (no interference—extreme interference)

Mayo Dysphagia Questionnaire- 30 Days/2 Weeks (MDQ-30; MDQ-2) (McElhiney et al. [31]; Grudell et al. [20])

Multiple different scoring systems for groups of items (Likert scale, dichotomous scales, hierarchical scales). Some questions are stem-leaf arrangements where patient only answers further questions if the stem question is positive. Subject may answer anywhere from 14 to 55 queries.

• Onset of dysphagia

• Dysphagia

• Change in dysphagia

• Change—to what degree

• Severity of dysphagia (categorical)

• Severity of dysphagia (linear analog scale)

• Degree of dysphagia today

• Frequency of dysphagia

• Dysphagia for liquids

• Cold liquids, warm liquids

• Solid food dysphagia

• Liquid dysphagia following solid bolus impaction

• Avoids oatmeal

• Avoids banana

• Avoids apple

• Avoids ground meat

• Avoids bread

• Avoids steak/chicken

• Dysphagia w/oatmeal

• Dysphagia w/banana

• Dysphagia w/apple

• Dysphagia w/ground meat

• Dysphagia w/bread

• Dysphagia w/dry fibrous solid

• Food modifications

• Modifies oatmeal

• Modifies banana

• Modifies apple

• Modifies ground meat

• Modifies bread

• Modifies steak/chicken

• Pace compared to others

• Minutes to complete a meal

• Dysphagia for pills

• Impaction

• Impaction >5 min

• Odynophagia

• Odynophagia following solid bolus impaction

• Lack of odynophagia

• Heartburn composite

• Acid regurgitation composite

• GERD composite

• Seasonal allergies

• Food allergies

• Childhood asthma

• Adult asthma

• Antacids

• H2 blockers

• PPIs

• Fundoplication

• Fundoplication in the last 30 days

• Esophagectomy

• Esophagectomy in the last 30 days

• Dilation

• Dilation in the last 30 days

Swallowing Quality of Life (McHorney et al. [21])

Ten domains and symptom frequency (SP  =  swallowing problem)

Burden

• Dealing with my SP is very difficult.

• SP is a major distraction in my life.

Eating duration

• It takes me longer to eat than other people.

• It takes me forever to eat a meal.

Eating desire

• Most days, I don’t care if I eat or not.

• I don’t enjoy eating anymore.

• I’m rarely hungry anymore.

Food selection

• Figuring out what I can eat is a problem for me.

• It is difficult to find food I both like and can eat.

Communication

• People have a hard time understanding me.

• It’s been difficult for me to speak clearly.

Fear

• I fear I may start choking when I eat food.

• I worry about getting pneumonia.

• I am afraid of choking when I drink liquids.

• I never know when I am going to choke.

Mental health

• My SP depresses me.

• I get impatient dealing with my SP.

• Being so careful when I eat or drink annoys me.

• My SP frustrates me.

• I’ve been discouraged by my SP.

Social

• I do not go out to eat because of my SP.

• My SP makes it hard to have a social life.

• My usual activities have changed because of my SP.

• Social gatherings are not enjoyable because of my SP.

• My role with family/friends has changed because of my SP.

Fatigue

• Feel exhausted

• Feel weak

• Feel tired

Sleep

• Have trouble falling asleep.

• Have trouble staying asleep.

Symptom frequency

• Coughing

• Choking when you eat food

• Choking when you take liquids

• Having thick saliva or phlegm

• Gagging

• Having excess salvia or phlegm

• Drooling

• Problems chewing

• Food sticking in your throat

• Food sticking in your mouth

• Food/liquid dribbling out your mouth

• Food/liquid coming out your nose

• Coughing food/liquid out your mouth

Reflux Disease Questionnaire (Shaw et al. [33])

Three domains (heartburn, regurgitation, dyspepsia)

• Acid taste frequency

• Acid taste severity

• Movement of materials severity

• Movement of materials frequency

• Frequency of pain behind the breastbone

• Frequency of burning behind the breastbone

• Severity of burning behind the breastbone

• Severity of pain behind the breastbone

• Upper stomach burning severity

• Upper stomach burning frequency

• Upper stomach pain frequency

• Upper stomach pain severity

GERD Impact Scale (Jones et al. [13])

Subjects make one of four responses—daily, often, sometimes or never

• 1. How often have you had the following symptoms:

  • Pain in your chest or behind the breastbone?

  • Burning sensation in your chest or behind the breastbone?

  • Regurgitation or acid taste in your mouth?

  • Pain or burning in your upper stomach?

  • Sore throat or hoarseness that is related to your heartburn or acid reflux?

• 2. How often have you had difficulty getting a good night’s sleep because of your symptoms?

• 3. How often have your symptoms prevented you from eating or drinking any of the foods you like?

• 4. How frequently have your symptoms kept you from being fully productive in your job or daily activities?

• 5. How often do you take additional medication other than what the physician told you to take (such as Tums, Rolaids, Maalox)?

GerdQ (Jones et al. [34])

• 1. How often did you have a burning feeling behind your breastbone (heartburn)?

• 2. How often did you have stomach contents (liquid or food) moving upwards to your throat or mouth (regurgitation)?

• 3. How often did you have a pain in the centre of the upper stomach?

• 4. How often did you have nausea?

• 5. How often did you have difficulty getting a good night’s sleep because of your heartburn and/or regurgitation?

• 6. How often did you take additional medication for your heartburn and/or regurgitation, other than what the physician told you to take? (such as Tums, Rolaids, Maalox?)

Scored—0  =  0 day, 1  =  1 day, 2  =  2–3 days, 3  =4–7 days

Chinese GERDQ (Wong et al. [35])

Subjects grade each item on 5-point Likert scale (1  =  none/no symptoms past year, 2  =  mild: symptoms can be easily ignored/less than once per month, 3  =  moderate: awareness of symptoms but easily tolerated/≥ once per month, 4  =  severe: symptoms sufficient to cause an interference with normal activities/≥ once daily)

• 1. Frequency of heartburn

• 2. Severity of heartburn

• 3. Frequency of feeling of acidity in stomach

• 4. Severity of feeling of acidity in stomach

• 5. Frequency of acid regurgitation

• 6. Severity of acid regurgitation

• 7. Frequency of “use of antacids”

GSRS (Gastrointestinal Symptom Rating Scale) Revicki et al. [60]

Response scale for patients

• 1. No discomfort at all

• 2. Slight discomfort

• 3. Mild discomfort

• 4. Moderate discomfort

• 5. Moderately severe discomfort

• 6. Severe discomfort

• 7. Very severe discomfort.

GSRS items

• 1. Have you been bothered by stomach ache or pain during the past week? (Stomach ache refers to all kinds of aches or pains in your stomach or belly.)

• 2. Have you been bothered by heartburn during the past week? (By heartburn we mean a burning pain or discomfort behind the breastbone in your chest.)

• 3. Have you been bothered by acid reflux during the past week? (By acid reflux we mean regurgitation or flow of sour or bitter fluid into your mouth.)

• 4. Have you been bothered by hunger pains in the stomach or belly during the past week? (This hollow feeling in the stomach is associated with the need to eat between meals.)

• 5. Have you been bothered by nausea during the past week? (By nausea we mean a feeling of wanting to be sick.)

• 6. Have you been bothered by rumbling in your stomach or belly during the past week? (Rumbling refers to vibrations or noise in the stomach.)

• 7. Has your stomach felt bloated during the past week? (Feeling bloated refers to swelling in the stomach or belly.)

• 8. Have you been bothered by burping during the past week? (Burping refers to bringing up air or gas through the mouth.)

• 9. Have you been bothered by passing gas or flatus during the past week? (Passing gas or flatus refers to the release of air or gas from the bowel.)

• 10. Have you been bothered by constipation during the past week? (Constipation refers to a reduced ability to empty the bowels.)

• 11. Have you been bothered by diarrhoea during the past week? (Diarrhoea refers to frequent loose or watery stools.)

• 12. Have you ever been bothered by loose stools during the past week? (If your stools have been alternately hard and loose, this question only refers to the extent you have been bothered by the stools being loose.)

• 13. Have you been bothered by hard stools during the past week? (If your stools have been alternately hard and loose, this question only refers to the extent you have been bothered by the stools being hard.)

• 14. Have you been bothered by an urgent need to have a bowel movement during the past week? (This urgent need to open your bowels makes you rush to the toilet.)

• 15. When going to the toilet during the past week, have you had the feeling of not completely emptying your bowels? (The feeling that after finishing a bowel movement, there is still more stool that needs to be passed.)

Carlsson–Dent Questionnaire/QUEST (Carlsson et al. [36]) [Item Scoring in Parentheses]

• 1. Which one of these four statements best describes the main discomfort you get in your stomach or chest? (A burning feeling rising from your stomach or lower chest up towards your neck [5], feelings of sickness or nausea [0], pain in the middle of your chest when you swallow [2], none of the above [0])

• 2. Having chosen one of the above, please now choose which one of the next three statements best describes the timing of your main discomfort? (any time [−2], most often within 2 h of taking food [3], always at a particular time of day or night without any relationship to food [0])

• 3. How do the following affect your main discomfort?

  • Larger than usual meals (worsens [1], improves [−1], no effect [0])

  • Food rich in fat (worsens [1], improves [−1], no effect [0])

  • Strongly flavoured or spicy food (worsens [1], improves [−1], no effect [0])

• 4. Which one of the following best describes the effect of indigestion medicines on your main discomfort? (no benefit [0], definite relief within 15 min [3], definite relief after 15 min [0], not applicable [I don’t take indigestion medicines] [0])

• 5. Which of the following best describes the effect of lying flat, stooping, or bending on your main discomfort? (no effect [0], brings it on or makes it worse [1], gives relief [−1], don’t know [0])

• 6. Which of the following best describes the effect of lifting or straining (or any other activity that makes you breathe heavily) on your main discomfort? (no effect [0], brings it on or makes it worse [1], gives relief [−1], don’t know [0])

• 7. If food or acid-tasting liquid returns to your throat or mouth what effect does it have on your main discomfort? (no effect [0], brings it on or makes it worse [1], gives relief [−1], don’t know [0])

Quality of Life in Reflux and Dyspepsia (Wiklund et al. [61])

Subscales (5)

• Emotional distress

• Sleep disturbance

• Food/drink problems

• Physical/social functioning

• Vitality

Total score

GERD-QOL (Chan et al. [37])

Patients indicate rating from 0 to 4 for each item. (0  =  strongly agree, 1  =  somewhat agree, 2  =  neutral, 3  =  somewhat disagree, 4  =  strongly disagree).

• 1. Afraid to eat

• 2. Unable to sleep

• 3. Inconvenient to take medication regularly

• 4. Discomfort when exercise

• 5. Reduced social activity

• 6. Afraid to eat or drink too much

• 7. Disturbed by side effect of medication

• 8. Avoided bending over

• 9. Afraid to have favourite food and drinks

• 10. Needed to be careful of sleeping posture

• 11. Could not concentrate on work

• 12. Affected sexual life

• 13. Disturbed postprandial activities

• 14. Frustrated to take medications regularly

• 15. Worry that the disease will turn into a serious disease

• 16. Feel anxious and distressed

Gastrointestinal Quality of Life Index (Eypasch et al. [38])

Five domains and total score, 36 items

• Symptoms

• Emotion

• Physical function

• Social function

• Medical treatment

• Total Score

GERD-HRQL (Velanovich et al. [39])

Subjects rate the first 10 items (0  =  no symptoms, 1  =  symptoms noticeable but not bothersome, 2  =  symptoms noticeable and bothersome, but not every day, 3  =  symptoms bothersome every day, 4  =  symptoms affect daily activities, 5  =  symptoms incapacitating, unable to do daily activities) and final item as satisfied/neutral/dissatisfied.

• 1. How bad is your heartburn?

• 2. Heartburn when lying down?

• 3. Heartburn when standing up?

• 4. Heartburn after meals?

• 5. Does heartburn change your diet?

• 6. Does heartburn wake you from sleep?

• 7. Do you have difficulty swallowing?

• 8. Do you have pain with swallowing?

• 9. Do you have bloating or gassy feelings?

• 10. If you take medication, does this affect your daily life?

• 11. How satisfied are you with your present condition?