Quality-of-Life Questionnaires

The quality-of-life scores on the oropharyngeal cancer timelines come from questionnaires that patients fill out themselves. Each measures one part of daily life on a 0 to 100 scale (20 to 100 for swallowing), where higher is better.

How the scores are used on the timelines

The oropharyngeal cancer treatment timelines show quality of life in four lanes: overall, swallowing, speech and mood. Each lane uses one questionnaire, and each number is an average reported by a group of patients in a published study, before treatment and at set times afterward. Time is counted from the end of treatment.

A few points help in reading them:

• Higher is better in every lane. One questionnaire (speech) is normally scored the other way, so it has been flipped to match.

• About 10 points is a noticeable change. Differences smaller than that are usually not something patients notice.

• The numbers describe groups, not individuals. Any one person may do better or worse than the average.

• Some timelines combine studies. The scores come from several studies with different patients, so small differences between timelines are not meaningful.

Overall quality of life: EORTC QLQ-C30 global health status

The EORTC QLQ-C30 is a 30-question core questionnaire from the European Organisation for Research and Treatment of Cancer (EORTC), used for people with any type of cancer. Its global health status score comes from two questions that ask people to rate their overall health and their overall quality of life during the past week, each on a scale from 1 (very poor) to 7 (excellent). The answers are converted to a score from 0 to 100, where higher is better.

More information: EORTC QLQ-C30 (EORTC Quality of Life Group)

Swallowing: MD Anderson Dysphagia Inventory (MDADI)

The MDADI was developed at The University of Texas MD Anderson Cancer Center to measure how swallowing affects daily life for people with head and neck cancer. It has 20 statements about eating and swallowing, grouped into a general question and emotional, functional and physical sections, each answered on a five-step scale from strongly agree to strongly disagree. The timelines use the composite score, which runs from 20 (extremely poor) to 100 (high functioning), so the swallowing lane starts at 20 rather than 0.

Swallowing itself, as opposed to how it feels in daily life, is measured with tests such as the modified barium swallow study (see swallow evaluations).

More information: MD Anderson Dysphagia Inventory (American Academy of Otolaryngology–Head and Neck Surgery)

Speech: EORTC QLQ-H&N35 speech scale

The QLQ-H&N35 is a 35-question head and neck module that is added to the QLQ-C30. Its speech scale has three questions about hoarseness, trouble talking to other people and trouble talking on the telephone during the past week. It is a symptom scale, so it is normally scored with higher meaning more trouble. On the timelines it is shown as 100 minus the score, so that higher means better speech, matching the other lanes. The EORTC has since released an updated head and neck module, the QLQ-H&N43.

More information: EORTC Quality of Life Group questionnaires (see the head and neck module)

Mood: EORTC QLQ-C30 emotional functioning

The emotional functioning score of the QLQ-C30 comes from four questions about feeling tense, worrying, feeling irritable and feeling depressed during the past week. It is scored from 0 to 100, where higher means better emotional well-being. On several timelines, mood scores are higher a year after treatment than before it, reflecting the stress of a new diagnosis at the start.

More information: EORTC QLQ-C30 (EORTC Quality of Life Group)

UW-QOL: University of Washington Quality of Life questionnaire

The UW-QOL is a short questionnaire made for people with head and neck cancer. It covers 12 areas, including pain, appearance, activity, recreation, swallowing, chewing, speech, shoulder, taste, saliva, mood and anxiety, each scored from 0 to 100 where higher is better, plus questions about overall quality of life during the past 7 days. On the surgery alone timeline, the dashed points 1 month after surgery come from a small study that used the UW-QOL and reported middle (median) scores, so they are not directly comparable with the averages in the other lanes.

More information: UW-QOL version 4 (University of Washington; copy hosted by the American Academy of Otolaryngology–Head and Neck Surgery)

About the forms

These questionnaires are copyrighted by their developers, who make them available for patient care and research, usually with permission. Copies are not posted on this site; the links above go to each questionnaire's official information.