Quality of life instruments relevant to coeliac disease
Adult instruments | |||
Instrument | Author | Participants | Instrument description |
Generic | |||
Zung Self Rating Depression Scale149 | Ciacci 2003150 | 581 CD | 20-Item self-report, 4-point Likert scale. Assesses four characteristics of depression. |
Gastrointestinal Quality of Life Index151 | Casellas 2008152 | 340 CD- 177 untreated vs 163 on GFD | 36-Item self-report, 4-point Likert scale. Assesses five domains: symptoms, physical function, emotional function, social function and medical function. |
COPE (brief)153 | Smith 2011154 | 156 CD | 28-Item self-report, 4-point Likert scale. Measures 14 coping responses. |
Sainsbury 2013155 | 189 CD | ||
EuroQol-5D156 | Casellas 2008152 | 340 CD | 5-Item self-report, 5-point Likert scale plus a general health rating (scored on a 20 cm visual analogue scale). Measures five dimensions: mobility, self-care, daily activities, pain/discomfort and anxiety/depression. |
Grey 2010157 | 783 CD | ||
Norström 2011158 | 1031 CD | ||
Casellas 2015159 | 366 CD on GFD>1 year | ||
Ramirez-Cervantes 2015160 | 80 CD on GFD≥6 months | ||
Beck Depression Inventory161 | Borghini 2016162 | 210 CD (70 untreated vs 70 on GFD 6–12 months vs 70 on GFD>12 months) | 21-Item self-report, 4-point Likert scale. Evaluates 21 symptoms of depression, including emotions, behavioural changes and somatic symptoms. |
Nachman 2009128 | 132 Newly diagnosed CD | ||
Nachman 2010163 | 53 Newly diagnosed CD | ||
Psychological General Well-Being Index164 | Ford 2012165 | 288 CD | 22-Item self-report, 6-point Likert scale. Includes six dimensions: anxiety, depressed mood, positive well-being, self-control, general health and vitality. |
Smith 2011154 | 156 CD | ||
Mustalahti 2002131 | 19 screen-detected CD vs 21 symptom-detected CD | ||
Mahadev 2016127 | 211 (71 screen-detected CD vs 140 symptom-detected CD) | ||
Borghini 2016162 | 210 CD (70 untreated vs 70 on GFD 6–12 months vs 70 on GFD>12 months) | ||
Paavola 2011130 | 466 CD (96 screen detected CD vs 370 symptom-detected CD vs 110 non-CD controls) | ||
Peräaho 2004166 | 39 CD | ||
Viljamaa 2005167 | 98 CD (54 screen-detected CD vs 44 symptom-detected CD) | ||
Ukkola 2011132 | 698 CD | ||
Smith 2011154 | 156 | ||
Paarlahti 2013168 | 596 CD | ||
Hospital Anxiety and Depression Scale169 | Häuser 2007170 | 516 CD | 14-Item self-report, 4-point Likert scale. Seven items pertain to anxiety and seven to depression. |
Häuser 2006171 | 446 CD | ||
Barratt 2011172 | 225 CD | ||
Barratt 2011173 | 225 CD | ||
Ramirez-Cervantes 2015160 | 80 CD on GFD≥6 months | ||
The Short-Form 36-Item QoL measure174 | Bakker 2013175 | 57 CD+T1D | 36- Item self-report, 3-point, 5-point and 6-point Likert scales as well as binary (yes/no) response items. Measures eight domains: physical functioning, role limitations due to physical health, role limitations due to emotional problems, energy/fatigue, emotional well-being, social functioning, pain and general health. |
Usai 2002176 | 58 CD | ||
Usai 2007177 | 129 CD | ||
Barratt 2011172 | 225 CD | ||
Barratt 2011173 | 225 CD | ||
Hallert 1998115 | 89 CD | ||
Viljamaa 2005167 | 98 CD | ||
Johnston 2004178 | 14 CD | ||
Häuser 2006170 | 516 CD | ||
Häuser 2006171 | 446 CD | ||
Nachman 2009128 | 132 Newly diagnosed CD | ||
Nachman 2010163 | 53 Newly diagnosed CD | ||
Hopman 2009179 | 53 CD | ||
Tontini 2010180 | 43 CD | ||
Aksan 2015 | 205 CD | ||
CD-specific scales | |||
Celiac Disease Questionnaire30 | Häuser 2006170 | 516 CD | 28-Item self-report, 7-point Likert scale. Measures four domains: emotional and social problems, disease-related worries and GI symptoms. |
Zampieron 2011181 | 187 CD | ||
Ford 2012165 | 288 CD | ||
Marchese 2013182 | 171 CD | ||
Sainsbury 2013155 | 189 CD | ||
Pouchot 2014183 | 211 CD | ||
Aksan 2015 | 205 CD | ||
Celiac Disease Quality of Life Survey29 | Mahadev 2016127 | 211 CD | 20-Item self-report, 5-point Likert scale. four subscales: limitations, dysphoria, health concerns and inadequate treatment. |
Zingone 2011184 | 230 CD | ||
Casellas 2013185 | 298 CD | ||
Casellas 2015159 | 366 CD on GFD>1 year | ||
Lee 2016186 | 2138 CD | ||
Rodriguez-Almagro 2016187 | 1230 CD | ||
Russo 2017188 | 19 CD | ||
Castilhos 2015189 | 103 CD | ||
Dowd 2017190 | 220 CD | ||
Fatigue scales | |||
The Chronic Fatigue Syndrome Questionnaire191 | Siniscalchi 2005192 | 130 CD | 8–Item self-report for physical fatigue and five items for mental fatigue. The score ranges from 0 to 26. |
The Fatigue Severity Scale193 | 9-Item self-report (score range 1–7 according to patient’ agreement) The scores range from 9 to 63. | ||
Daily Fatigue Impact Scale Questionnaire194 | Jordà 2010195 | 51 CD | 8-Item self-report questionnaire, five alternative responses per item (from 0=no problem, to 4=extreme problem). |
Eating disorder scales | |||
Binge Eating Staircases196 | Passananti 2013197 | 100 CD | 16-Item self-report. Measures the behavioural aspects of binge eating, as well as feelings and thoughts associated with binge eating. |
Eating Attitudes Test 26198 | Passananti 2013197 | 100 CD | 26-Item self-report, multiple choice. Assesses diet-related disorders, bulimia and anxiety-related to food. |
Eating Disorder Inventory 2199 | Passananti 2013197 | 100 CD | 91-Item self-report (range 0–78); 11 scales, eg, inadequacy, interceptive awareness, fear of maturity, asceticism, impulsivity and social insecurity. |
Wagner 2015200 | 259 CD adolescents | ||
Karwautz 2008201 | 283 CD adolescents | ||
Eating Disorder Examination (EDE)202 | Wagner 2015200 | 259 CD adolescents | 45–60 min semi-structured interview (28-day recall). Four subscales: restraint, eating concern, shape concern, weight concern. |
Karwautz 2008201 | 283 CD adolescents | ||
Eating Disorder Examination Questionnaire (EDE-Q)203 | Karwautz 2008201 | 283 CD adolescents | 28-Item, self-report. Uses same subscales as the EDE interview. |
Sleep disorders scale | |||
Pittsburgh Sleep Quality Index204 | Zingone 2010205 | 60 CD | 19 self-rated items (15 multiple choice and 4 write in)+5 questions rated by a bed partner or roommate (range 0–57). |
Paediatric scales | |||
TNO-AZL Children’s QOL questionnaire (TACQOL) parent206 and child207 report | Kolsteren 2001208 | 133 CD children | Generic–two forms for children and parents: The TACQOL comprises seven scales (range0–16):
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van Koppen 2009209 | 32 CD children | ||
DUX-25210 | van Koppen 2009209 | 32 CD children | (Ages 5–16) 25-item self-report with four domains: physical, emotional, social and home functioning. |
Inventory of Life Quality in Children and Adolescents211 | Wagner 2008212 | 365 CD adolescents | 9-Item self-rating questionnaire Nine areas: school, family, social peer contacts, interests and leisure activities, physical health, psychological health, overall QoL judgement and disease and therapy-associated burden. |
Berner Subjective Well-being Inventory213 | Wagner 2008212 | 365 CD adolescents | 39-Item self-report questionnaire, with 4-point and 6-point Likert scale questions. |
PedsQL core: Paediatric Quality of Life Measurement Inventory214 | Sud 2012215 | 28 CD+ type 1 diabetes children | Four areas: physical functioning (eight items), emotional functioning (five items), social functioning (five items) and school functioning (five items). |
Biagetti 2015216 | 76 CD children | ||
Sevinc 2016217 | 52 CD children | ||
WHOQOL-BREF218 | de Lorenzo 2012219 | 33 CD child/parent dyads vs 62 control child/parent dyads | 26-Item self-report (parent), 5-point Likert scale. Six domains: loneliness, general health perception, physical and psychological functioning, social and environmental. |
Autoquestionnaire de l’Enfant Imagé -AUQUEI (child form)220 | de Lorenzo 2012219 | 33 CD child/parent dyads vs 62 control child/parent dyads | 26-Item self-report (child), explores familial and social relationships, physical activity, health, body functions and temporary separation from the familial environment. |
EuroQol-5D156 | Nordyke 2011221 | 153 screen-detected CD children and 66 known CD vs non-CD controls | 5-Item self-report, 5-point Likert scale, plus a general health rating (scored on a 20 cm visual analogue scale) (child friendly pilot and proxy used). |
Nordyke 2013222 | 207 CD vs non-CD controls | ||
DISABKIDS Chronic (short version)223 | Bystrom 2012224 | 160 CD child/parent dyads | 12-Item self-report Likert scale for ages 8–18 (additional available version for ages 4–7) mental, social and physical domains. |
12-Item Short Form Survey (SF-12)225 | Altobelli 2013226 | 140 CD children | 12-Item questionnaire, eight domains: physical functioning, role-physical, bodily pain, general health, vitality, social functioning, role-emotional and mental health. |
Impact Scale of Childhood Diseases227 | Di Filippo 2013228 | 45 CD children | 30-Item self-report, four domains: impact of disease and treatment, impact on child development and adjustment, impact on parents and impact on family. |
Kidscreen229 | Myleus 2014230 | 328 CD children | 52-Item self-report, measures overall HRQoL along with 10 HRQoL subdomains capturing physical well-being, psychological well-being, moods and emotions, self-perception, autonomy, parent relation and home life, financial resources, social support and peers, school environment and social acceptance (bullying); 5-point Likert scale. |
Children’s Depression Inventory231 | Simsek 2015135 | 25 CD children | 27-Item, self-report, symptom-oriented scale (ages 7–17). |
General Purpose Health-Related Quality of Life Questionnaire for Children232 | Simsek 2015135 | 25 CD children | 40-Item, self-report, four domains: psychological well-being, social relationships, physical function and everyday life activities. |
CD-specific (paediatric) scales | |||
TACQOL-COE | Kolsteren 2001208 | 133 CD children | CD-specific instrument (based on TACQOL) TACQOL-COE-DIET: Five questions to address GFD. |
CDDUX233 | Van Koppen 2009209 | 32 CD children | 12-Item questionnaire, three domains: communication, having CD and diet. |
Pico 2014234 | 118 CD child/parent dyads | ||
Torres 2016235 | 214 CD child/parent dyads and 52 CD children | ||
Lins 2015236 | 33 CD children | ||
Vriezinga 2016237 | 78 CD children | ||
Meyer 2016238 | 34 CD child/parent dyads | ||
Celiac Disease Paediatric Quality of Life Scale239 | Jordan 2013239 (validation study) | 181 CD children | 13-Item (ages 8–12) and 17-item (ages 13–18) scale. Home, school, social and self-esteem (also diet and future in 13–18 tool). Ages 8–18 only. |
CDDUX, celiac disease DUX.