Moving from clinician-defined to patient-reported outcome measures for survivors of high-grade glioma

Figures & data

Table 1 Different patient-centered outcome measures

Patient-centered outcome measures
Clinical outcome assessment	Definition	Example
PRO measures	Patient-reported outcome, patient´s self-report of symptoms, function or health-related quality of life	Health-related quality of life: EORTC-QLQ-C30 and BN20, FACT-Br Symptom assessment: MDASI-BT
PerfO measures	Performance outcome, testing of patient´s function by a professional	Neurocognitive function: for example The Montreal Cognitive Assessment (MMSA) Function/Activity limitations, BADL: ex. Barthel index (BI)
ClinRO measures	Clinician-reported outcomes, assessments were a clinician applies professional expertise to judge and interpret their observations of a patient´s health or function	Performance status: ECOG/WHO performance status, KPS scale, Neurologic assessment: NANO scale
ObsRO measures	Observer-reported outcomes	Observations reported by someone else who knows the patient, usually a family member, for example, observations about patients' behavior or function in daily life

Abbreviations: EORTC QLQ-C30, European Organization for Research and Treatment of Cancer general instrument for patients with cancer; EORTC BN20, European Organization for Research and Treatment of Cancer brain tumor module; FACT-Br, Functional Assessment of Cancer Therapy-Brain; IADL, Instrumental activities in daily life; MDASI-BT, MD Anderson Symptom Inventory for Brain Tumor; NANO, Neurologic Assessment in Neuro-Oncology.

Table 2 Patient-reported outcomes used in neuro-oncology

Tool	Number of items	Purpose	Domains	Reference
Health-related quality of life
EORTC QLQ-C30	30	Health-related quality of life, generic instrument for patients with cancer	Five functional scales (physical, role, emotional, cognitive and social functioning), three symptom scales (fatigue, pain, and nausea/vomiting), six single items (dyspnea, insomnia, appetite loss, constipation, diarrhea, and financial impact) and a two-item scale for global health and overall quality of life. Recall period: last week	^Citation91
EORTC-QLQ-BN20	20	Brain cancer module	BN20 four multi-item scales (future uncertainty, visual disorder, motor dysfunction, and communication deficit) and seven single-item symptom scales (headaches, seizures, drowsiness, hair loss, itchy skin, leg weakness, and bladder control) Recall period: last week	^Citation92
FACT-G	27	Health-related quality of life, generic instrument for patients with cancer	Five domains (functional, physical, social, family, and emotional well-being)	^Citation93,Citation94
FACT-Br	23	Brain cancer module	23 items brain tumor-specific symptoms	^Citation95
Symptom assessment tools
MDASI-BT	22 6	Cancer- and brain tumor specific symptoms. Symptom severity and interference in daily life	22 items in six domains (general, gastrointestinal, constitutional, neurologic deficit, cognitive, and affective) Interference in daily life, (activity and mood) Recall period: 24 hours	^Citation67,Citation93,Citation94,Citation96
NFBrSI-24	24	Symptom assessment/Symptom index for patients with advanced brain tumors	24 items, where 21 out of 24 items are included in FACT-Br three subscales (disease-related symptoms, treatment side effects and function/well-being) Recall period: 7 days	^Citation71
Holistic and supportive care needs assessment
Brain PCI	48 10 4	Holistic needs assessment	Section 1. 48 items for practical, family, emotional, spiritual and physical issues Section 2. 10 items, referral requests Section 3. 4 fields for writing questions Recall period: prior to visits	^Citation72
SCNS34-BS	34 16	Supportive care needs	34 items (psychologic, health system and information, physical and daily living, patient care and support, sexuality) 16 brain tumor-specific items Recall period: last months	^Citation97,Citation98

Abbreviations: EORTC QLQ-C30, European Organization for Research and Treatment of Cancer general instrument for patients with cancer; EORTC BN20, European Organization for Research and Treatment of Cancer brain tumor module; FACT-G, Functional Assessment of Cancer Therapy-General; FACT-Br, Functional Assessment of Cancer Therapy-Brain; MDASI-BT, MD Anderson Symptom Inventory for Brain Tumor; NFBrSI-24, National Comprehensive Cancer Network & Functional Assessment of Cancer Therapy Brain Symptom Index; PCI, Patient Concern Inventory; SCNS34-BS, Supportive Care Needs Survey 34 plus brain subscale.

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