Table 3

Quality of life instruments relevant to coeliac disease

Adult instruments
InstrumentAuthorParticipantsInstrument description
Generic
 Zung Self Rating Depression Scale149Ciacci 2003150581 CD20-Item self-report, 4-point Likert scale. Assesses four characteristics of depression.
 Gastrointestinal Quality of Life Index151Casellas 2008152340 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)153Smith 2011154156 CD28-Item self-report, 4-point Likert scale. Measures 14 coping responses.
Sainsbury 2013155189 CD
 EuroQol-5D156Casellas 2008152340 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 2010157783 CD
Norström 20111581031 CD
Casellas 2015159366 CD on GFD>1 year
Ramirez-Cervantes 201516080 CD on GFD≥6 months
 Beck Depression Inventory161Borghini 2016162210 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 2009128132 Newly diagnosed CD
Nachman 201016353 Newly diagnosed CD
 Psychological General Well-Being Index164Ford 2012165288 CD22-Item self-report, 6-point Likert scale. Includes six dimensions: anxiety, depressed mood, positive well-being, self-control, general health and vitality.
Smith 2011154156 CD
Mustalahti 200213119 screen-detected CD vs 21 symptom-detected CD
Mahadev 2016127211 (71 screen-detected CD vs 140 symptom-detected CD)
Borghini 2016162210 CD (70 untreated vs 70 on GFD 6–12 months vs 70 on GFD>12 months)
Paavola 2011130466 CD (96 screen detected CD vs 370 symptom-detected CD vs 110 non-CD controls)
Peräaho 200416639 CD
Viljamaa 200516798 CD (54 screen-detected CD vs 44 symptom-detected CD)
Ukkola 2011132698 CD
Smith 2011154156
Paarlahti 2013168596 CD
 Hospital Anxiety and Depression Scale169Häuser 2007170516 CD14-Item self-report, 4-point Likert scale. Seven items pertain to anxiety and seven to depression.
Häuser 2006171446 CD
Barratt 2011172225 CD
Barratt 2011173225 CD
Ramirez-Cervantes 201516080 CD on GFD≥6 months
 The Short-Form 36-Item QoL measure174Bakker 201317557 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 200217658 CD
Usai 2007177129 CD
Barratt 2011172225 CD
Barratt 2011173225 CD
Hallert 199811589 CD
Viljamaa 200516798 CD
Johnston 200417814 CD
Häuser 2006170516 CD
Häuser 2006171446 CD
Nachman 2009128132 Newly diagnosed CD
Nachman 201016353 Newly diagnosed CD
Hopman 200917953 CD
Tontini 201018043 CD
Aksan 2015205 CD
CD-specific scales
 Celiac Disease Questionnaire30Häuser 2006170516 CD28-Item self-report, 7-point Likert scale. Measures four domains: emotional and social problems, disease-related worries and GI symptoms.
Zampieron 2011181187 CD
Ford 2012165288 CD
Marchese 2013182171 CD
Sainsbury 2013155189 CD
Pouchot 2014183211 CD
Aksan 2015205 CD
 Celiac Disease Quality of Life Survey29Mahadev 2016127211 CD20-Item self-report, 5-point Likert scale. four subscales: limitations, dysphoria, health concerns and inadequate treatment.
Zingone 2011184230 CD
Casellas 2013185298 CD
Casellas 2015159366 CD on GFD>1 year
Lee 20161862138 CD
Rodriguez-Almagro 20161871230 CD
Russo 201718819 CD
Castilhos 2015189103 CD
Dowd 2017190220 CD
Fatigue scales
 The Chronic Fatigue Syndrome Questionnaire191Siniscalchi 2005192130 CD8–Item self-report for physical fatigue and five items for mental fatigue. The score ranges from 0 to 26.
 The Fatigue Severity Scale1939-Item self-report (score range 1–7 according to patient’ agreement)
The scores range from 9 to 63.
 Daily Fatigue Impact Scale Questionnaire194Jordà 201019551 CD8-Item self-report questionnaire, five alternative responses per item (from 0=no problem, to 4=extreme problem).
Eating disorder scales
 Binge Eating Staircases196Passananti 2013197100 CD16-Item self-report. Measures the behavioural aspects of binge eating, as well as feelings and thoughts associated with binge eating.
 Eating Attitudes Test 26198Passananti 2013197100 CD26-Item self-report, multiple choice. Assesses diet-related disorders, bulimia and anxiety-related to food.
 Eating Disorder Inventory 2199Passananti 2013197100 CD91-Item self-report (range 0–78); 11 scales, eg, inadequacy, interceptive awareness, fear of maturity, asceticism, impulsivity and social insecurity.
Wagner 2015200259 CD adolescents
Karwautz 2008201283 CD adolescents
 Eating Disorder Examination (EDE)202Wagner 2015200259 CD adolescents45–60 min semi-structured interview (28-day recall). Four subscales: restraint, eating concern, shape concern, weight concern.
Karwautz 2008201283 CD adolescents
 Eating Disorder Examination Questionnaire (EDE-Q)203Karwautz 2008201283 CD adolescents28-Item, self-report. Uses same subscales as the EDE interview.
Sleep disorders scale
  Pittsburgh Sleep Quality Index204Zingone 201020560 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 2001208133 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 200920932 CD children
 DUX-25210van Koppen 200920932 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 Adolescents211Wagner 2008212365 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 Inventory213Wagner 2008212365 CD adolescents39-Item self-report questionnaire, with 4-point and 6-point Likert scale questions.
 PedsQL core: Paediatric Quality of Life Measurement Inventory214Sud 201221528 CD+ type 1 diabetes childrenFour areas: physical functioning (eight items), emotional functioning (five items), social functioning (five items) and school functioning (five items).
Biagetti 201521676 CD children
Sevinc 201621752 CD children
 WHOQOL-BREF218de Lorenzo 201221933 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)220de Lorenzo 201221933 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-5D156Nordyke 2011221153 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 2013222207 CD vs non-CD controls
 DISABKIDS Chronic (short version)223Bystrom 2012224160 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)225Altobelli 2013226140 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 Diseases227Di Filippo 201322845 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.
 Kidscreen229Myleus 2014230328 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 Inventory231Simsek 201513525 CD children27-Item, self-report, symptom-oriented scale
(ages 7–17).
 General Purpose Health-Related Quality of Life Questionnaire for Children232Simsek 201513525 CD children40-Item, self-report, four domains: psychological well-being, social relationships, physical function and everyday life activities.
 CD-specific (paediatric) scales
 TACQOL-COEKolsteren 2001208133 CD childrenCD-specific instrument (based on TACQOL) TACQOL-COE-DIET:
Five questions to address GFD.
 CDDUX233Van Koppen 200920932 CD children12-Item questionnaire, three domains: communication, having CD and diet.
Pico 2014234118 CD child/parent dyads
Torres 2016235214 CD child/parent dyads and 52 CD children
Lins 201523633 CD children
Vriezinga 201623778 CD children
Meyer 201623834 CD child/parent dyads
 Celiac Disease Paediatric Quality of Life Scale239Jordan 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.