Table 3

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.
COPE (brief)153	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	Siniscalchi 2005192	130 CD	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.
Eating Disorder Examination (EDE)202	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): 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 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).
EuroQol-5D156	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.