Table 2 Instruments to be used in SPARCLE3
ICF construct | Instrument | Captures | Domains | Number of Items | Response scale, Recall period | Populations investigated | Used in previous SPARCLE waves | References |
|---|---|---|---|---|---|---|---|---|
WHO-QOL BREF Disabilty module Picture version Talking mats | Health related Quality of life | •Overall Quality of Life and General Health •Physical Health •Psychological •Social relationships •Environment | 26 | 5-point Likert scale past 2 weeks | • Longitudinal CP sample • Supplementary CP sample • General population | No | Skevington SM, et al. (2004). Quality of Life Research; 13(2), 299–310 (ref [50]) The WHOQOL Group. (1998) Psychol Med, 28(3), 551–558. (ref [51]) | |
Kidscreen 10 Index | Health related Quality of Life 8–18 years | Global Health related QoL index | 10 | 5-point Likert scale | Longitudinal CP sample | SPARCLE 1 SPARCLE 2 | Ravens-Sieberer U, et al. (2010) Qual Life Res;19(10):1487–500. (ref [52]) | |
Participation | WHODAS 2.0 WHO Disability Assessment Schedule | Activities (5 dimensions) Participation | • Cognition • Mobility • Self-Care • Getting along • Life activities • Participation | 12 | 5-point Likert scale Past 30 days | • Longitudinal CP sample • Supplementary CP sample | No | Ustun TB et al. Manual for WHO Disability Assessment Schedule – WHODAS 2.0 (WHO 2010) (Ref [53]) |
QYPP-YA Questionnaire of Young People Participation (version adapted for young adults from the original QYPP) | Frequency of discretionary participation | • Autonomy • Getting on with other people • Community recreation • Finances • Work/education • Sexuality • Media | 22 | 5-point Likert scale | • Longitudinal CP sample • Supplementary CP sample • General population | SPARCLE1 (FPQ) SPARCLE2 (QYPP version adapted for adolescents) | (QYPP) Tuffrey C, et al. (2013), Child Care Health Dev; 39(4):500–11 (ref [54]) | |
Environmental factors | EAEQ European Adult Environment Questionnaire (version adapted from the original ECEQ) | Availability of needed environmental items | • Home Environment •Work/college/university/day placement • Public places •Transport • Finance • Services | 61 | •Not needed•Needed and available •Needed and not available | • Longitudinal CP sample • Supplementary CP sample | SPARCLE1 (original version for children) SPARCLE2 (original version for children) | Dickinson HO et al. (2011) Disabil Rehabil; 33(1):36–50 (ref [55]) |
YHC-SUN Youth Health Care – Satisfaction, Utilization and Needs | Service provision | • Access • Perceived satisfaction with health care | 30 | 5-point Likert scale | • Longitudinal CP sample • Supplementary CP sample | no | Schmidt et al. BMC Health Services Research (2016) 16:189 (ref [56]) Adapted from the long form | |
Transition competence scale | Medical care | Health care competence | 3 | 4-point Likert scale | • Longitudinal CP sample • Supplementary CP sample | no | Hermann-Garitz C, et al. (2017) Gesundheitswesen; 79(06):491–6 (ref [57]) | |
Socio economic background of the family | 2 | • Longitudinal CP sample • Supplementary CP sample | SPARCLE1 SPARCLE2 | |||||
Body function and structure | GMFCS and BFMF (adult version) Washington Group Short Set of Disability Questions | Type and severity of impairments | • type of CP (SCPE) • motor function • seizures • cognitive impairment • vision, hearing • pain (frequency, amount, location) • general health | 14 | • Longitudinal CP sample • Supplementary CP sample | SPARCLE1 SPARCLE2 | Mc Cormick A et al. (2007) Dev Med Child Neurol; 49(4):265_9 (ref [58] Elvrum A-KG (2017); Phys Occup Ter Pediatr; 37(3): 239–51 (ref [59]) Washington group on Disability statistics (ref [60]) | |
EDACS (Eating and Drinking Ability Classification System) Feeding scale | Eating and drinking abilities | 1 | 5 levels of severity | • Longitudinal CP sample • Supplementary CP sample | no | EDACS [internet] (ref [61]) Sellers D et al. (2014); 56(3): 245–51 (ref [62]) | ||
VSC (Viking Speech Scale) | Speech abilities | 1 | 4 levels of severity | • Longitudinal CP sample • Supplementary CP sample | no | Pennington L et al. (2013) Res Dev Disabil; 34(10):3202–10 (ref [63] | ||
CFCS (Communication Function Classification System) | Communication abilities | 1 | 5 levels of severity | • Longitudinal CP sample • Supplementary CP sample | no | Hidecker MJC et al. (2011) Dev Med Child Neurol;53(8):704–10 (ref [64]) | ||
SMIS (St. Mark’s hospital Incontinence Score) | Bowel dysfunction | • frequency • strategic adaptations | 7 | 5-point Likert scale Y/N questions | • Longitudinal CP sample • Supplementary CP sample | no | Vaizey CJ et al. (1999) Gut; 44(1):77–80 (ref [65]) | |
ISI (Incontinence severity Index) Revised Sandvik Scale | Bladder dysfunction | • frequency • amount of leakage. | 2 | 4 levels of severity | • Longitudinal CP sample • Supplementary CP sample | Sandvik H et al. (2006) Int Urogynecol J Pelvic Floor Dysfunct; 17(5): 520–4 (ref [66]) | ||
BaSIQS Basic Scale on Insomnia complaints and Quality of Sleep | Sleep Problems | • sleep quality • insomnia complaints | 7 | Last month | •Longitudinal CP sample •Supplementary CP sample •General population | no | Allen Gomes A et al. (2015) Chronobiol Int; 32(3):428–40 (ref [67]) | |
GAD 7 Generalized Anxiety Disorder | Anxiety | frequency of anxious symptoms | 7 | 4-point Likert scale Last 2 weeks 4 levels of severity | •Longitudinal CP sample •Supplementary CP sample •General population | no | Spitzer RL et al. (2006) Arch Intern Med; 166(10):1092–7 (ref [68]) | |
PHQ 9 Patient Health Questionnaire | Depression | degree of depression severity | 9 | 4-point Likert scale Last 2 weeks 5 levels of severity | •Longitudinal CP sample •Supplementary CP sample •General population | no | Kroenke K et al. (2001)J Gen Intern Med; 16(9): 606–13 (ref [69]) | |
GSE General Self Efficacy scale | Self-efficacy | – | 10 | 4-point Likert scale Total score | •Longitudinal CP sample •Supplementary CP sample •General population | no | Schwarzer et al. (1995) (ref [70]) | |
Personal factors | Social determinants | Current status of personal social determinants | • housing •lifestyle • educational level (3 levels) • current activity • income • children • social and familial relationships • spirituality | 18 | •Longitudinal CP sample •Supplementary CP sample •General population | SPARCLE1 SPARCLE2 (some indicators + new items) | Some questions issued from the European Social Survey (ref [71]) | |
Risky behaviours | • smoking behaviour • alcohol drinking behaviour | 5 | •Longitudinal CP sample •Supplementary CP sample •General population | no |