Table 3.
Validation Studies: Reason for Exclusion
| PROM | Author (year); country | Aim of study | Construct (domains) | Population characteristics |
Setting | ||
|---|---|---|---|---|---|---|---|
| Age in years | Disease type | Treatment type | |||||
| Excluded as mean age <15–39 years | |||||||
| PedsFACT-BrS | Lai et al. (2007); United States41 | Development of QOL measure | Quality of life (physical well-being; emotional well-being and illness experience; family and social well-being; brain tumor-specific concerns) | 7–11 years (average age 9.3, SD = 1.5 part 1 item generation, average 9.8 SD = 1.3, for part 2 validation) | Range of brain tumors | Free of treatment for 1 year | Follow-up appointments |
| PROMIS | Lai et al. (2017); United States42 | Evaluation of computerized adaptive testing and short forms of PROMIS | Quality of life (fatigue, mobility, upper extremity function, depressive symptoms, anxiety, peer relationships) | 7–22 years mean 13.9 | Range of brain tumors | Mean 3.7 (SD = 3.4) years since treatment | Follow-up appointments |
| PedsQL 4.0 | Palmer et al. (2007); United States43 | Reliability and validation study | Generic quality of life, Peds QL fatigue, Peds QL brain tumor module (cognitive problems, pain and hurt, movement and balance, procedural anxiety, nausea, worry) | 2–18 years (average 9.76) | Range of brain tumors | 34.3% off treatment >12 months, 19.2% off treatment <12 months | Completed in hospital clinic setting |
| HUI 2/3 | Le Galès et al. (1999); France and Belgium44 | Adapt HUI 2 and HUI 3 for use in France | Health-related quality of life (HUI 2: sensation, mobility, emotion, cognition, self-care, pain. HUI 3: vision, hearing, speech, ambulation, dexterity, emotion, cognition, pain) | 8–19 years (mean age 10 boys, 12 girls) | Medulloblastoma and ependymoma | nr | Clinic settings |
| Excluded as mean age >15–39 years | |||||||
| 10-item Likert scale | Rogers et al. (2001); United States45 | Adapting scale for brain tumor patients | Quality of life | Mean age 48 years SD = 19.87 | Brain tumors | Median time since treatment 11 months | Adult brain tumor clinic |
| Modified SF-36 | Miao et al. (2008); China46 | To develop brain tumor-specific quality-of-life questionnaire for Chinese patients with a brain tumor | Quality of life (physiological, psychological, patient satisfaction with medical care, activities of daily living) | 15–77 years, mean age 43, median 47 | Glioma, meningioma, pituitary adenoma, and neurilemmoma patients | Surgery | Postoperative setting |
| SF-36 | Bunevicius (2017); Lithuania47 | Reliability and validity of SF-36 in patients with brain tumors | Quality of life (social functioning, general health, role limitations (physical and emotional problems), physical health, mental health, vitality, pain | Mean age 55.8 years SD 14.4 | Brain tumors | nr | Approached before surgery |
| MDASI brain tumor module | Armstrong et al. (2006); United States48 | Validation of MDASI brain tumor module | Symptom burden (focal symptoms, generalized symptoms, treatment, and medication-related symptoms) | 18–84 years mean 45.8 (52% 18–45 years) | Range of brain tumors | On treatment. Nearly all undergone surgery, half chemotherapy or radiotherapy | Outpatient clinic |
| Excluded as >50% population over 39 years | |||||||
| Patient concerns inventory | Rooney et al. (2014); Scotland49 | Feasibility and clinical utility of holistic needs assessment | Patient concerns (practical, physical, family, emotional, spiritual) | 18–34 years 17%, 35–59 62%, >60 years 21% | Range of brain tumors | 0–12 months off treatment 47%, 53% over 13 months off treatment | Neuro-oncology outpatient clinic |
| Excluded as <50% diagnosed with a brain tumor | |||||||
| CNQ | Clinton-McHarg et al. (2012); Australia36 | Development of needs questionnaire | Unmet needs (treatment environment and care, feelings and relationships, daily life, information and activities, education, work) | 18–23 years (median 21) | Nonhematological cancers 53% (no more detail reported) | 90% off treatment (diagnosed in last 5 years) | Mailed questionnaire sent to eligible candidates |
| MMQL-AF | Koike et al. (2014); Japan50 | Development of Japanese version of MMQL-AF | Quality of life (physical functioning, cognitive functioning, psychological functioning, body image, social functioning, outlook on life, human relationships) | 13–19 years (mean age 15.75 SD 1.79) | 3.5% had brain tumor | Off treatment at least 1 year | Eight hospitals across Japan |
| CCSS-NAQ | Cox et al. (2013); United States51 | Development of comprehensive health-related needs assessment for adult survivors of childhood cancer | Unmet needs | Mean age 39 years. 25–30 13.67%, 31–41 45% | Mixed cancer types (CNS 13.41%) | Chemotherapy 24%, radiation 13%, Surgery 8%, chemo and radiation 47%, unknown 6%, no treatment 0.17% | Questionnaire mailed out |
| Impact of cancer | Zebrack et al. (2010); United States52 | Psychometric validation of the impact of cancer scale for AYA survivors of childhood cancer | Impact of cancer (your body and your health, cancer treatment and health care, having children, who are you, talking and thinking about cancer, meaning of cancer, memory and thinking, finances and money, family, relationships; socializing and being with friends, life goals) | Mean 26.7 years, SD = 5.3 | Mixed cancer: CNS 11.9% | Off treatment | Questionnaires mailed out |
| Holistic needs assessment tool (Integrated Assessment Map) | Stevens et al. (2018); United Kingdom53 | Understanding and utilizing unmet needs of TYA's with cancer to determine priorities of care | Holistic needs assessment tool | 16–24 years | Mixed cancer (7/42 had brain tumor diagnosis) | On or off treatment | Questionnaires mailed out. |
| Questionnaire to assess needs and experiences | Sperling et al. (2017); Denmark54 | Development of questionnaire to evaluate treatment and survivorship from perspective of AYAs | Needs and experiences (time before treatment, being told about your illness, being a young patient, your treatment, receiving help living with and after cancer, how are you feeling today) | Phase 1 item generation: 15–29 years Phase 2 cognitive validation: 17–38 years |
Phase 1: not 50% brain tumors Phase 2: no brain tumor patients included |
nr | Recruited from oncology centers and cancer charity |
| Benefit and burden scale | Maurice-Stam et al. (2011); Holland55 | Validation of the benefit and burden scale in young survivors of cancer in Dutch population | Impact of cancer | 8–18 (mean age 13.8) | Mixed cancer types (7.8% CNS tumors) | Completed treatment 6 months–3 years previous | Questionnaires posted out |
| SF-SUNS | Campbell et al. (2014); Canada56 | Development and validation of short-form SUNS | Unmet needs (financial concerns, emotional health, access and continuity of care, information, relationships) | Aged 20–39 years at diagnosis 3.7% population | Cancer survivors (“other” types made 32% including brain, gynecological, head and neck, kidney, liver, multiple myeloma) | On and off treatment | Cross-sectional survey posted out in three Canadian provinces. |
AYA, adolescent and young adult; CCSS-NAQ, childhood cancer survivor study needs assessment questionnaire; CNQ, cancer needs questionnaire; HUI, health utilities index; MDASI, MD Anderson symptom inventory; MMQL-AF, Minneapolis-Manchester quality-of-life survey-adolescent form; nr, not reported; PedsFACT-BrS, pediatric functional assessment of cancer therapy-childhood brain tumor survivors; PedsQL, pediatric quality of life; PROMIS, patient reported outcome measurement information system; SF-SUNS, short-form survivor unmet needs survey; SD, standard deviation; TYA, teenage and young adult.