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Symptom and quality of life assessment tools

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The impact that symptoms have on a patient’s QoL can be assessed in several ways. A general questionnaire, such as the Short Form (SF)‐36 [55], evaluates QoL irrespective of the disease state. However, a generic measurement tool does not allow for the assessment of symptoms specific to certain diseases. Instead, symptom‐based assessment, or disease‐specific instruments, take into account the important features of a certain disease state, which are not captured by the more generic assessment tools.

The use of symptom and QoL assessment tools has been extensively evaluated in patients with GERD, a group that has consistently scored lower on all domains of the SF‐36 [56]. While many questionnaires have been developed, there has been an overall lack of valid, reliable, and easy‐to‐use assessment tools to evaluate GERD symptoms and to monitor response to treatment [57]. Each symptom or QoL assessment tool has its own advantages and disadvantages, and this reflects the difficulty in developing a tool that captures GERD symptoms that often vary significantly across patients. An ideal assessment tool should be able to (i) monitor symptoms both daily and over time; (ii) evaluate both daytime and nocturnal symptoms; (iii) assess both typical and atypical symptoms; (iv) incorporate questions regarding general well‐being; (v) be able to be used before, during, and after treatment to assess for response; (vi) allow for self‐assessment; and (vii) be available across multiple languages. In addition, an ideal tool should have proven psychometric properties (validity, reliability, and sensitivity), have the flexibility to respond to changes in patient symptoms, and be easy to understand [57]. A summary of different GERD assessment tools, along with some strengths and weaknesses of each, is presented in Table 1.6.

Improvement in patient symptoms and QoL is an important treatment outcome, and further tools have been developed to assess response to treatment including the GERD Treatment Satisfaction Questionnaire [58] and the Gastroesophageal Reflux Disease‐Health Related Quality of Life (GERD‐HRQL) instrument [59], which measures symptom severity and assesses treatment response to medications and surgery for GERD. Numerous studies have shown the positive effect that acid‐suppressive medications [60–64] and antireflux surgery [65, 66] have on GERD patients’ QoL. Proton pump inhibitor (PPI) use has been shown to restore patient QoL to levels comparable with that seen in a healthy population [60]. While the use of H2‐receptor antagonists does improve QoL, PPIs have been shown to have a more pronounced effect [67, 68].

While numerous GERD assessment and QoL instruments have been developed, fewer have been developed to assess symptoms and QoL in patients with dysphagia. As in GERD, patients with dysphagia also have been found to score lower on the SF‐36. The 27‐item Mayo Dysphagia Questionnaire (MDQ) broadly assesses esophageal dysphagia, but not dysphagia due to any specific underlying disease state [69]. The Swallowing Quality of Life questionnaire (SWAL‐QOL) [70] and M.D. Anderson Dysphagia Inventory [71] measure QoL in patients with oropharyngeal dysphagia and head and neck cancer. Two symptom and QoL assessment tools have been used in adult [72] and pediatric [73] patients with eosinophilic esophagitis. In achalasia, as is common in other diseases, symptom severity and health‐related QoL as experienced by the patient are often independent of the patient’s physiologic parameters [74]. The Measure of Achalasia Disease Severity (ADS) questionnaire is a 10‐question survey that assesses achalasia on health‐related QoL and evaluates dysphagia to both liquids and solids, specific types of food, other associated symptoms, and impact of symptoms on overall health [74, 75]. The Eckardt score, which is a widely‐used four‐question survey, assesses the burden of weight loss, dysphagia, retrosternal pain, and regurgitation [76]. Both are valid surveys that can be used to assess achalasia patient symptoms and QoL pre‐ and post‐treatment [77]. Heller myotomy and pneumatic dilation have both been shown to improve patient QoL [78–82].

Table 1.6 Available assessment tools for patients with GERD.

Source: Adapted from Fass [57].

Instrument name Brief summary Strengths Weaknesses
GERD score [83] Six‐item questionnaire to evaluate GERD outcomes after medical or surgical treatmentAdministered before and six months after treatment GERD‐specificPsychometrically validated Does not include atypical symptomsDoes not assess short‐term treatment responseNot self‐assessedReproducibility > six months has not been assessedNot available in different languages
Ulcer Esophagitis Subjective Symptom Scale (UESS) [84] Visual analog scale to evaluate four dimensions (abdominal pain, reflux discomfort, intestinal discomfort, and sleep difficulties)Administered at baseline and four weeks after treatment Self‐assessedMultidimensionalPsychometrically validated Not GERD‐specificDoes not monitor symptoms dailyNot available in different languages
GERD Symptom Assessment Scale (GSAS) [85] 15‐item patient assessment tool evaluating various dimensions of 15 GI‐related symptoms GERD‐specificMultidimensionalSelf‐assessedPsychometrically validatedSensitive to changes in severity of symptoms over time Not available in different languagesDoes not monitor symptoms daily
Gastroesophageal Reflux Disease Activity (GRACI) [86] Five‐item diary of GERD symptoms every day for one weekCombined with data obtained during a clinic visitAdministered at baseline and at three‐month intervals GERD‐specificMultidimensionalPsychometrically validatedProven validity and reliability Not available in different languages
GERD Symptoms Frequency Questionnaire (GSFQ) [87] Six questions that assess the frequency of GERD symptoms in the previous seven days, and the effects of GERD on sleep, daily activities, and eating GERD‐specificSelf‐assessedPsychometrically validated Not multidimensionalNot available in different languagesRarely used in clinical trials
GERD assessment scales [88] Consists of three separate scales: GERD burden scale, symptom scale (seven common symptoms related to GERD), and treatment scale (evaluating patient behaviors to control symptoms) GERD‐specificMultidimensionalSelf‐assessedPsychometrically validated The scales have not been separately validated, so the entire tool must be usedNo daily assessment of symptomsNot available in different languages
Gastrointestinal Symptom Rating Scale (GSRS) [89, 90] Combines 15 items into 5 symptom clusters (reflux, abdominal pain, indigestion, diarrhea, constipation)Evaluates GI symptoms over time or after treatment Self‐assessedAvailable in different languagesHas been shown to correlate with the Short Form‐36 and Psychological General Well Being scale [89] Not GERD‐specificOriginally developed for PUD and IBSDifferent language versions have shown differences in psychometric properties
Patient‐assessed Upper Gastrointestinal Symptom Severity Index (PAGI‐SYM) [91] Self‐assessment tool for patients with GERD, dyspepsia, and gastroparesisEvaluates 20 items with 6 subscales (heartburn/regurgitation, nausea/vomiting, upper abdominal pain, lower abdominal pain, bloating, and fullness/early satiety Self‐assessedMultidimensionalAvailable in different languagesPsychometrically validated Not GERD‐specificNo assessment of daily symptomsOnly assesses symptom severity and not frequency
Reflux Disease Questionnaire (RDQ) [92] 12 questions to assess severity/frequency of pain and burning behind the breastbone, acid taste in the mouth, and upper stomach pain/burning GERD‐specificSelf‐assessedPsychometrically validated No assessment of daily symptomsPrimarily used in German‐speaking patients
GERD Questionnaire (GERDQ) [93] Evaluates the frequency/severity of heartburn, regurgitation, and feeling of gastric acidity, along with antacid use GERD‐specificSelf‐assessedMultidimensionalPsychometrically validated Only usable in Chinese‐speaking patientsNo assessment of daily symptoms
Frequency Scale for Symptoms of GERD (FSSG) [94] 12‐question instrument that evaluates frequency of typical GERD symptoms GERD‐specificSelf‐assessed Only usable in Japanese‐speaking patientsNo assessment of daily symptoms
PPI Acid Suppression Symptom Test (PASS‐test) [95] Five‐item questionnaire to evaluate patients on PPI therapy who have persistent symptoms, and to monitor their response GERD‐specificSelf‐assessedPsychometrically validated Only available in English and FrenchNo measurement of severity or frequency of symptoms
Symptom diary [96] Three‐item questionnaire that focuses only on heartburn (one completed in the morning and the last two in the evening)Evaluates burning feeling at night, severity of most intense burning during the day, and number of antacids taken over previous 24 hours GERD/Heartburn‐specificSelf‐assessed Not available in different languageNo assessment of daily symptomsNot multidimensionalNot psychometrically validated
Reflux Questionnaire (ReQuest) [97–99] Tracks GERD symptoms and patient well‐being over timeLong and short version that evaluate seven dimensions (acid complaints, upper abdominal complaints, lower abdominal complaints, nausea, disorders of sleep, general well‐being, and other symptoms) GERD‐specificMultidimensionalAssesses daily symptomsPsychometrically validatedAvailable in multiple languages Mostly used in clinical researchScore analysis is complex
Has two subscales that evaluate GI symptoms and well‐being
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