Table 1 Summary of the instruments used by variable category in the population-based survey

CCHS/ Survey of Living with a Neurological Condition (SLNCC) – Chronic Conditions [18, 19]

SLNCC – Diagnosis [19]

Participation

Assessment of Life Habits (Life - H) [20, 21]

Pediatric Quality of Life (PedsQL) Measurement Model - Family Impact Module [22]

Quality of Life Outcomes in Neurological Disorders (Neuro-QOL): Satisfaction with Social Roles and Activities Module, Ability to Participate Module [23]

CCHS - voluntary organization participation [18]

CCHS – Activities of Daily Living Module: Loss of Productivity Module; Recent Life Events; Restriction of Activities Module; Voluntary organization participation [18]

GSS – Two Week Disability Module Occupation and Health [24]

PALS –“Filter Questions” Module: Labour Force Discrimination; Local Transportation [25]

SLNCC – Restriction of activities Module [19]

Multidimensional Scale of Perceived Social Support (MSPSS) [26, 27]

CCHS – Access to health care services: Contacts with Health Professionals; Health Care Utilization Module; Patient Satisfaction, Community Based Care; Patient Satisfaction, Health Care Services [18]

PALS –Education Modification: Employment Modification; Housing Module; Leisure and Recreation [25]

SLNCC – Formal assistance: Informal assistance; Out of pocket expenses; Medication use [19]

Giving Youth a Voice (GYV): (young adults: 17-26 only) [28]

Lorig Self-Efficacy [29]

Partners in Health (PIH) [30]

Patient Activation Measure (PAM) [31]

Patient Assessment of Chronic Illness Care (PACIC) [32]

Simple Lifestyle Indicator Questionnaire (SLIQ) [33]

Transition Readiness Assessment Questionnaire (TRAQ) [34]

CCHS: Coping with Stress Module; Spiritual Values [18]

Health Utility Index (HUI) 3 [35, 36]

Neuro-QOL Domains: Upper Extremity Function; Lower Extremity Function; Fatigue; Sleep Disturbance; Communication; Applied Cognition-General Concerns; Applied Cognition-Executive Function; Emotional & Behavioural Dyscontrol; Depression; Anxiety; Positive Affect and Well-being [23]

PedsQL Modules: Physical Function; Emotional Function; School Function; Social Function [37]

Short-Form Health Status (SF-36) [38]

CCHS – General Health Module [18]

GSS – Health Status [24]

CCHS: Education; Socio-demographic characteristics [18, 19]

CCHS/SLNCC – Income [18, 19]

CCHS/SLNCC – Labour force [18, 19]

PALS/SLNCC – Employment Status [18, 25]