Table 2.
HRQoL issues generated from PROMs or interviews with AYAs
| Measurement concept | Source | |
|---|---|---|
| PROMa | Interview | |
| Physical functioning | ||
| General physical functioning/health status | Adolescent Quality of Life Instrument, ASKp, Bt-DUX, CHIP-AE, CHQ, CAYA-T, MMQL, KINDL Kiddo, PCQL-32, PEDQoL, PedsQL measures, PODCI, QOLCC, FACT-G, SF-36 | [59] |
| Symptoms
Pain/discomfort/hurt Fatigue, energy, loss of strength, insomnia, nausea, vomiting, diarrhoea, constipation, skin changes, dizziness, oedema, hair loss, mouth sores, weight loss, anorexia, cachexia, appetite, desire to eat |
CHQ, CHIP-AE, CNQ-YP, HRHI, MSAS 10–18, PAC-QoL, PCQL-32, PedsFAACT, PedsQL measures, PODCI, PROMIS, QOLCC, 16-D, HUI, EORTC QLQ-C30, SCNS, PGWB | [25, 28, 32, 34, 39, 42, 49, 50, 59, 61] |
| Physical limitations | CNQ-YP, DISAKIDS, PedsQL, PODCI, PROMIS, 16-D, EORTC QLQ-C30 | |
| Cognitive functioning | ||
| Concentration, memory | CAYA-T, MMQL, MSAS 10–18, PedsQL, PEDQOL, PCQL-32, QOLCC, HUI, EORTC QLQ-C30 | [49] |
| Activity limitation | ||
| Self-care, education, work, sport/leisure/hobbies, social/family activities | Adolescent Quality of Life Instrument, BASES-C, CAYA-T, CHQ, CNQ-YP, PedsQL, PIES, 16-D, HUI, EORTC QLQ-C30, SCNS | [25, 34, 39, 49, 50, 59–61] |
| Loss of “normal life” | [50, 60, 61] | |
| Plans for the future | CNQ-YP | [49] |
| Abilities/realisation of talents/difficulty competing | CHIP-AE, CNQ-YP | [49] |
| Positive effects of restricted activities (education) | [61] | |
| Relationships with others | ||
| General social functioning | BASES-C, Bt-DUX, CAYA-T, DISAKIDS, MMQL, PAC-QoL, PCQL-32, QOLCC, EORTC QLQ-C30, FACT-G, SF-36 | [60] |
| Friends
Loss of friendships, disconnected, isolated from others, peer rejection, bullying |
CNQ-YP, DISAKIDS, KINDL Kiddo, PEDQOL, PedsQL, PIES, PROMIS, 16-D | [25, 34, 50, 59, 61] |
| Family
Strained relationships Dependency on others/lack of autonomy |
Adolescent Quality of Life Instrument, CHQ CNQ-YP, DISAKIDS, KINDL Kiddo, PEDQOL |
[25, 34, 49, 50, 59] |
| Communication/refusal to talk | PedsQL, QOLCC, 16-D | [34, 49] |
| Romantic/sexual relationships | CAYA-T, CNQ-YP, MMQL, SCNS, IOC | [42] |
| Prospects for future relationships | [42] | |
| Impact on others
Emotional, time impact, parental behaviour, over-protectiveness |
CHQ, CNQ-YP, PIES, SCNS | [34, 61] |
| Positive effects
Greater value placed on friendships, appreciation of the support from others, strengthened family ties, opportunities for new friendships, positive attention from others |
[25, 34, 42, 50] | |
| Emotional functioning | ||
| Frustration, anger, upset, anxiety, depression, fear, vulnerability, preoccupation with illness, meaning of being ill, boredom | Adolescent Quality of Life Questionnaire, BASC, BASES-C, Bt-DUX, CAYA-T, CHQ, CNQ-YP, DISAKIDS, KINDL Kiddo, MMQL, MSAS 10–18, PAC-QoL, PCQL-32, PEDQOL, PROMIS, PIES, QOLCC, 16-D, McGill Quality of Life Questionnaire, MASC, HUI, EORTC QLQ-C30, PGWB, HADS, Beck Depression Inventory, STAI-S, FACT-G, SF-36 | [25, 34, 49, 50, 59–61] |
| Loss of confidence/self-esteem | CHQ, PODCI | [34, 42, 49] |
| Lack of motivation | [49] | |
| Hope | HSA | [34] |
| Improved self-appraisals (maturity, better person), self-esteem | [34, 50] | |
| Fertility | ||
| Reproductive Concerns Instrument, HUI | [42] | |
| Body image | ||
| CNQ-YP, Bt-DUX, MMQL, MSAS 10–18, PEDQOL, PedsQL, PIES, and 16-D | [28, 34, 42] | |
| Spiritual wellbeing/outlook on life | ||
| Spiritual | CAYA-T, McGill Quality of Life Questionnaire | [60] |
| Outlook on life
Positive attitude to life |
MMQL, PWBS | [25, 50] |
| Financial difficulties | ||
| EORTC QLQ-C30, SCNS | ||
aPROMS used in the studies reviewed
Adolescent and/or Young Adult PROMs: Cancer Needs Questionnaire-Young People (CNQ-YP) [64], Bt-DUX [65], Perceived Illness Experience (PIES) [66], Adolescent Quality of Life Instrument [67], Hopefulness Scale for Adolescents (HSA) [68], Cancer Assessment for Young Adults—Testicular (CAYA-T) [69], Quality of Life in children and adolescents with cancer PEDQOL [70], Child Health Questionnaire (CHQ) CF 871 [71], The Behavioral Assessment System for Children (BASC) [72], DISAKIDS (DCGM-37) [73], Activities Scale for Kids, performance version (ASKp) [75], Pediatrics Outcomes Data Collection Instrument (PODCI) [77], Pediatric Functional Assessment of Anorexia and Cachexia Therapy (peds-FAACT) [78], PROMIS Pediatric Measures [79], MASC Multidimensional Anxiety Scale for Children [99]
Adapted existing measures: Paediatric Pediatric Quality of Life Inventory (PedsQL) Core [62, 80], Pediatric Cancer Quality of Life Inventory (PCQL-32) Varni et al. [81], Quality of Life for Children with Cancer (QOLCC) [82], The Pediatric Advanced Care Quality of Life Scale (PAC-QoL) [83], KINDL Kiddo [84], Child Health and Illness Profile (CHIP-AE) [85]. Adult Health-related Hindrance Inventory (HRHI) [86], Reproductive Concerns Instrument [87], Memorial Symptom Assessment Scale (MSAS 10–18) [88], Minneapolis-Manchester Quality of Life (MMQL) Questionnaire [89], Behavioural Affective and Somatic Experiences Scale (BASES-C) [90], 16-Dimensional Health-related Measure (16-D) [91]
Non-AYA specific: EORTC QLQ-C30 [63], Supportive Care Needs Survey (SCNS) [94], Impact of Cancer Scale (IOC) [95]. Note Roper used two questions from the IOC social and relationship scale, Health Utilities Index (HUI) [96], Psychological Wellbeing Scale (PWBS) [98]. Monteiro et al. [26] used only the personal growth subscale of the PWBS, Psychological General Wellbeing Index (PGWB) [100], McGill Quality of Life Questionnaire [101] Trevino et al. [30] used only the psychological well-being and existential subscales, Beck Depression Inventory [102], State Trait Anxiety Scale (STAI) [103], Hospital Anxiety and Depression Scale (HADS) [104], Functional Assessment of Cancer Treatment (FACT-G) [105], The MOS 36-Item Short-Form Health Survey (SF-36) [106]