Table 3

Quality of life instruments relevant to coeliac disease

Adult instruments
InstrumentAuthorParticipantsInstrument description
Generic
 Zung Self Rating Depression Scale149 Ciacci 2003150 581 CD20-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 GFD36-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 CD28-Item self-report, 4-point Likert scale. Measures 14 coping responses.
Sainsbury 2013155 189 CD
 EuroQol-5D156 Casellas 2008152 340 CD5-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 CD22-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 CD14-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+T1D36- 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 2015205 CD
CD-specific scales
 Celiac Disease Questionnaire30 Häuser 2006170 516 CD28-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 2015205 CD
 Celiac Disease Quality of Life Survey29 Mahadev 2016127 211 CD20-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 CD8–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 CD8-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 CD16-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 CD26-Item self-report, multiple choice. Assesses diet-related disorders, bulimia and anxiety-related to food.
 Eating Disorder Inventory 2199 Passananti 2013197 100 CD91-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 adolescents45–60 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 adolescents28-Item, self-report. Uses same subscales as the EDE interview.
Sleep disorders scale
  Pittsburgh Sleep Quality Index204 Zingone 2010205 60 CD19 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 reportKolsteren 2001208 133 CD childrenGeneric–two forms for children and parents: The TACQOL comprises seven scales (range0–16):
  • Generic: Dutch Children TNO-AZL QOL Questionnaire 25 items with four.

  • Domains: emotional, social, familiar, and physical.

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 adolescents9-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 adolescents39-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 childrenFour 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 dyads26-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 dyads26-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 controls5-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 dyads12-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 children12-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 children30-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 children52-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 children27-Item, self-report, symptom-oriented scale
(ages 7–17).
 General Purpose Health-Related Quality of Life Questionnaire for Children232 Simsek 2015135 25 CD children40-Item, self-report, four domains: psychological well-being, social relationships, physical function and everyday life activities.
 CD-specific (paediatric) scales
 TACQOL-COEKolsteren 2001208 133 CD childrenCD-specific instrument (based on TACQOL) TACQOL-COE-DIET:
Five questions to address GFD.
 CDDUX233 Van Koppen 2009209 32 CD children12-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 children13-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.