Table 1.
Summary of the instruments used by variable category in the population-based survey
|
Tool |
Population study |
Cohort study |
|||||
|---|---|---|---|---|---|---|---|
|
Adult* |
Parent |
Parent report on child |
Adult |
Parent |
Parent report on child |
Mature minor |
|
| Diagnosis and Co-morbidity | |||||||
| 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] |
✓ |
|
✓ |
✓ |
✓ |
|
|
|
Resource Utilization | |||||||
| 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] |
|
|
|
|
|
|
|
|
Self-management of Condition and Everyday Life | |||||||
| 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 Status | |||||||
| 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] |
|
|
|
✓ |
✓ |
✓ |
✓ |
|
Demographic Information | |||||||
| CCHS: Education; Socio-demographic characteristics [18,19] |
✓ |
✓ |
✓ |
|
|
|
|
| CCHS/SLNCC – Income [18,19] |
✓ |
✓ |
|
|
|
|
|
| CCHS/SLNCC – Labour force [18,19] |
✓ |
✓ |
✓ |
|
|
|
|
| PALS/SLNCC – Employment Status [18,25] | ✓ | ✓ | ✓ | ||||
* All respondents provide self-report data about themselves unless otherwise specified.