Table 1

Summary of the content of the BRIGHTLIGHT Survey

Construct and questionnaireDetails
Quality of life: Pediatric Quality of Life Questionnaire60 Contains 23 items scored on a 5-point Likert scale.
Four domains: physical, emotional, social and work/school functioning.
Two summary scores (physical and psychosocial function) and a total score.
Domain, summary and total scores on 0–100 scale, with 100 representing the best possible quality of life.
Scores <69.7 indicate a high risk of impaired quality of life.48
Health status: EuroQol-5 Dimension 3 level73 Comprises five dimensions (mobility, self-care, usual activities, pain/discomfort and anxiety/depression) scored on three levels (no, some and severe problems).
The EQ-5D visual analogue scale records self-reported health on a vertical scale ranging from ‘best imaginable health state’ to worst imaginable health state’.
Scores 0–1 with 0 representing death and 1 representing perfect health (negative scores represent a health state worse than death).
Anxiety and depression: Hospital Anxiety and Depression Scale74 A measure of depression and anxiety.
Contains 14 items, scored on a four-grade scale (0–3). Summary scores for depression and anxiety (ranging from 0 to 21).
Scores of 8–10 are defined as borderline and 11 and over are considered moderate/severe anxiety and depression.51
Social support: Multidimensional Scale of Perceived Social Support52 Scores for support by friends, family and significant others plus total support score.
Contains 12 statements, rated on 7-point Likert scale.
Total support score is an average ranging from 1 to 7; subsupport scores range 4–28.
Total scale score 1–2.9 are considered low support; a score of 3–5 is considered moderate support; and scores from 5.1 to 7 are considered high support.
Illness perception: The Brief Illness Perception Scale75 Measures the emotional and cognitive representations of illness.
Contains eight* questions with fixed response scale specific for each question, for example, not at all to extremely helpful.
Each question represents a different dimension of illness perception: consequence, personal control, treatment control, timeline, identity, coherence, emotional representation and concern. Responses scored 1–10, the higher the score, the greater perceived illness impact.
No overall score and each question represents a single domain.
Cancer experience questions37 Comprises 12 experience domains: prediagnosis experience, diagnostic experience, place of care, contact with healthcare professionals, treatment experience, fertility, involvement in clinical trials, adherence, communication and coordination of care, education, employment, well-being and relationships.
Total of 238 questions with question-specific responses describing experience.
  • *Timeline statement not included.