Table 1 Contents of questionnaires and data collection forms included in the head and neck 5000 clinical cohort study

Data capture form

Diagnosis and treatment

Based on the UK National Head and neck Cancer Audit [8]

1

Baseline, 4-month, 12-month

Co-morbidity

Adult co-morbidity assessment 27 (ACE-27) [11]

1

Health and Lifestyle

About You

Demographic data, Education, occupation [12], Income [13], EQ5D initially then EQ-5D-5 L [14], Smoking [15, 16], Alcohol [15, 16]

4

Baseline, 4-month, 12-month

Quality of life

Your Outlook

Revised Life Orientation Test (LOT-R) [17]

1

Baseline, 4-month, 12-month

Your General Health

EORTC QLQ-C30 [18]

2.5

Baseline, 4-month, 12-month

Specific Aspects of Your Health

EORTC QLQ-H&N35 [19]

2

Baseline, 4-month, 12-month

Your Feelings

Hospital Anxiety and Depression Scale (HADS) [20]

2

Baseline, 4-month, 12-month

Your Diet

Three items (fruit, vegetables and deep fried food) modified from the semi-quantitative Food, Frequency Questionnaire [21]

1

Baseline, 4-month, 12-month

You and Cancer

Fears of Recurrence [22]

½

4-month, 12-month

Your Personal costs

Designed by the study team

2

4-month , 12-month

Sexual history

Sexual History

Sexual History [23]

1

Baseline

Quality of life

Your symptoms

Head and neck radiotherapy questionnaire (late toxicity) [24]

5

12-months (only people who receive radiotherapy)

Withdrawal form

Withdrawal from study

Questions designed by the study team completed by research nurse

1

As appropriate

Mortality form

Place and mode of death

Questions designed by the study team completed by research nurse

2

As appropriate

Quality of life additional questions used in Bristol participants

Your Quality of Life

The revised University of Washington (UW) QOL questionnaire [25, 26]

2

Baseline, 4-month, 12-month

Difficulties in Your Life

The Social Difficulties Inventory (SDI) [27]

2

Baseline, 4-month, 12-month

Your Appearance

The Derriford Appearance Scale (DAS 24) [28]

6

Baseline, 4-month, 12-month