Table 1.
Construct and questionnaire | Details |
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.