Case control study on health-related quality of life in adult coeliac disease

doi:10.1016/S1590-8658(02)80087-1

Digestive and Liver Disease

Volume 34, Issue 8, August 2002, Pages 547-552

https://doi.org/10.1016/S1590-8658(02)80087-1 Get rights and content

Abstract

Aims. To evaluate whether health-related quality of life in adult coeliac disease is related to: 1) adhesion to gluten-free diet; 2) manifestation of clinical features; and 3) associated diseases.

Patients and methods. A total of 68 coeliac patients (54 female and 14 male) aged between 18 and 74 years, on gluten-free diet for at least two years were studied. The subjective health status was measured by means of the Short Form 36 Health Survey. A series of 136 subjects, matched according to sex, age and ethnic group, were evaluated as control group.

Results. Patients obtained worse scores with respect to healthy controls at all domains of Short Form 36 Health Survey (p<0.05); compliers showed better results than non-compliers. The lowest scores were obtained in patients with more than six symptoms, mostly in noncompliers, the highest in compliers with less than six symptoms. Patients with two or more associated diseases presented significantly worse scores than patients with only one associated disease.

Conclusions. The importance of gluten-free diet in clinical management of coeliac disease is confirmed by results of the present study; moreover, the results seem to indicate that a complex interplay of factors should be taken into account in evaluating health-related quality of life in adult coeliac disease. Accordingly, our data show that health-related quality of life of coeliac patients is impaired not only by poor compliance but also by different negative factors such as severity of illness (in terms of number of symptoms) at diagnosis and comorbidity

References (30)

E.J. Irvine
Is disease specific health related quality of life measurement a necessary evil when assessing clinical outcomes in inflammatory bowel disease?
Digest Liver Dis
(2000)
G. Bianchi et al.
Reduced quality of life in patients with chronic hepatitis C: effects of interferon treatment
Digest Liver Dis
(2000)
G.M. Giorgetti et al.
Dysmotility-like dyspeptic symptoms in coeliac patients: role of gluten and Helicobacter pylori infection
Digest Liver Dis
(2000)
G.R. Corazza et al.
Celiac disease and alopecia areata: report of a new association
Gastroenterology
(1995)
F. Velluzzi et al.
Thyroid and celiac disease: clinical, serological and echographic study
Am J Gastroenterol
(1998)
S. Iltanen et al.
Celiac disease and markers of celiac disease in patients with primary Sjögren's syndrome
Am J Gastroenterol
(1999)
M.N. Marsh et al.
Morphology of the mucosal lesions in gluten sensivity
Clin Gastroenterol
(1995)
G. Apolone et al.
The Italian SF-36 Health Survey Translation Validation and Norming
J Clin Epidemiol
(1998)
M.S. Gold et al.
Symptomless autoimmune thyroiditis in depression
Psych Res
(1982)
R. Fizpatrick et al.
Quality of life measures in health care. I: Applications and issues in assessment
Br Med J
(1992)

G. Pallis et al.

Intruments for quality of life assessment in patients with inflammatory bowel disease

Digest Liver Dis

(2000)

W.T. Cooke et al.

Coeliac disease

(1984)

B.T. Cooper et al.

Coeliac disease and immunological disorders

Br Med J

(1978)

P. Collin et al.

High frequency of coeliac disease in adult patients with type-one diabetes

Scand J Gastroenterol

(1989)

P. Collin et al.

Coeliac disease — associated disorders and survival

Gut

(1994)

Cited by (70)

Clinical features and psychological impact of celiac disease at diagnosis
2021, Digestive and Liver Disease
We aimed to describe the socio-demographic, behavioral and clinical profiles of adult patients with newly diagnosed celiac disease (CeD) and their possible association with QoL and psychological symptoms.
Adults newly diagnosed with CeD and residents in the Veneto region were included. Their sociodemographic characteristics, clinical presentation, mode of diagnosis, duration of symptoms before diagnosis and comorbidities were recorded. All patients completed the Beck Depression Inventory (BDI), State-Trait Anxiety Inventory (STAI) and Short Form Health Survey (SF-36) questionnaires.
Between 2016 and 2019, 110 CeD patients (81% females, mean age 37.5) were recruited. At diagnosis, patients were categorized into classical (n = 56), nonclassical CeD (n = 49) and asymptomatic (n = 5) groups. Patients with classical presentation had a lower QoL than nonclassical patients, who were found to be more depressed. We observed a diagnosis delay of more than 7 months in more than 60% of patients with both classical and nonclassical presentations and we found that a longer duration of GI symptoms decreased the self-reported SF36 scores in the physical health (p = 0.002), social functioning (p = 0.03) and general health (p = 0.009) domains. Women had an overall lower self-perceived QoL.
Symptomatic presentation at CeD diagnosis, diagnostic delay and sex may affect QoL and psychological disorders.
Predictors of adherence to a gluten-free diet in celiac disease: Do knowledge, attitudes, experiences, symptoms, and quality of life play a role?
2021, Nutrition
Citation Excerpt :
A large study of patients with CD found that younger age at the time of diagnosis, newly diagnosed patients, latency of diagnosis, and dissatisfaction with information from health care professionals reduces QoL [16]. Although few studies have demonstrated associations between specific QoL domains and adherence to a GFD, the evidence suggests no association between overall QoL and adherence [7,17–20]. Therefore, many aspects of knowledge, attitudes and beliefs, experiences and symptoms, and QoL have been individually associated with adherence to a GFD in CD.
This study aimed to identify the relationship between adherence to a gluten-free diet (GFD) and demographic characteristics, knowledge, attitudes, and beliefs regarding celiac disease (CD) and GFD, experiences of following a GFD, symptoms, and quality of life (QoL).
Patients with CD were recruited from outpatient clinics. Adherence to GFD was assessed using the CD adherence test (CDAT) and GFD score (GFD-S). Knowledge, attitudes, experiences, symptoms, and QoL were assessed using existing questionnaires. A multivariate logistic regression was performed.
Overall, 116 patients with CD were included (48 ± 16 y; 70% female). Based on the CDAT, 58 patients (50%) were adequate adherers, but 86 patients (74%) were adequate adherers according to GFD-S. When adherence was measured using the CDAT, being female was associated with lower odds of adherence (odds ratio [OR]: 0.36; P = 0.028), and better emotional wellbeing was associated with higher odds of adherence (OR: 1.19; P < 0.001). When adherence was measured using GFD-S, membership in a support group (OR: 6.17; P = 0.002), stronger beliefs about the chronicity of CD (OR: 1.15; P = 0.059), and weaker beliefs on accident/chance causing CD (OR: 1.94; P = 0.05) were associated with greater odds of adherence. Difficulties when eating with family/friends (OR: 0.98; P = 0.005) and weaker beliefs on immunity causing CD (OR: 0.77; P = 0.031) were associated with lower odds of adherence.
The association between gender, attending support groups, attitudes, experiences, and QoL with adherence to a GFD should be considered by health care professionals managing patients with CD.
Assessment of quality of life in children, adolescents, and adults with celiac disease through specific questionnaires: Review
2020, Nutrition Clinique et Metabolisme
The gluten-free diet (GFD) is a lifelong treatment for celiac patients which affects the quality of their life (QoL). This was evaluated by generic methods. Over time, specific instruments for celiac disease (CD) have been developed. The objective of this review is to identify the different CD-specific instruments that have estimated QoL in celiac patients, study their psychometric properties, and highlight the factors influencing the final scores.
An advanced database search (PubMed, Web of science, etc.) was launched in order to identify articles that evaluated QoL in children, adolescents, and adults with celiac disease. The items and subscales of each questionnaire were determined with the comparison of psychometric properties (Internal consistency, Reproductibility, Acceptance, Floor effect, Ceiling effect, Convergent validity, Construct validity and Discriminative validity).
Eighteen specific instruments have been identified. The assessment of QoL in celiac patients by these specific instruments allowed detecting the influence of specific characteristics related to CD on QoL. The developed and validated instruments showed acceptable psychometric properties in different countries. The obtained results showed that the QoL related to CD is reduced. However, monitoring GFD helps improving these scores.
CD-specific instruments are increasing considerably. They contain relevant items that can properly assess the QoL in patients with celiac disease.
Le régime sans gluten (GFD) est un traitement à vie destiné aux personnes atteints de la maladie cœliaque (CD). Il influence leur qualité de vie (QoL). Cette dernière a été évaluée par des méthodes génériques. Au fil du temps, des instruments spécifiques à la maladie cœliaque ont été développés. L’objectif de cette étude a été d’identifier les différents instruments spécifiques à la CD qui ont permis d’estimer la qualité de vie, d’étudier leurs propriétés psychométriques et de mettre en évidence les facteurs qui influencent les scores finaux.
Des recherches avancées dans les bases de données (PubMed, Web of science, etc.) ont été lancées pour identifier les articles évaluant la qualité de vie chez les enfants, les adolescents et les adultes atteints de la maladie cœliaque. Tout d’abord, les éléments et les sous-ensembles de chaque questionnaire ont été déterminés. Ensuite, les propriétés psychométriques (cohérence interne, validité, etc.) de chaque questionnaire ont été comparées.
Dix-huit instruments spécifiques ont été identifiés. L’évaluation de la qualité de vie chez les patients cœliaques à l’aide de ces instruments spécifiques a permis de détecter l’influence des caractéristiques spécifiques liées à la maladie cœliaque sur la qualité de vie. Les instruments développés et adaptés ont montré des propriétés psychométriques acceptables dans les différents pays. Les résultats ont montré aussi que la qualité de vie liée au CD est médiocre. Cependant, le suivi du GFD a contribué à l’amélioration de ces scores.
Les instruments spécifiques aux CD augmentent considérablement. Les faibles scores obtenus nécessitent de mettre en évidence les facteurs nécessaires à l’amélioration de la qualité de vie, notamment d’avoir une bonne adhésion au GFD.
The subjective experience of subjects diagnosed with celiac disease in adulthood
2018, Revue Europeenne de Psychologie Appliquee
Celiac disease is estimated to affect between 1 in 100 and 1 in 300 Caucasian subjects. Many quantitative studies have explored the issues encountered by these subjects; however, few studies have addressed the subjective and experiential dimensions of celiac disease.
The objective of this qualitative exploratory study is to expand current knowledge concerning the subjective experience of celiac disease and of a gluten-free diet in subjects diagnosed with celiac disease in adulthood.
Data was collected through non-directive interviews with 14 subjects aged between 28 and 53 (M = 41.7, SD = 7.48).
An interpretive phenomenological analysis identified various themes related to the experience of illness: (1) history of the disease, (2) symptoms, (3) nutrition, (4) perception of medical experiences, (5) relationships with family and friends, (6) psychological implications, and (7) consequences for daily living.
The results show the importance of developing a “mythology” (concerning the disease's origin) to enable the inclusion of the condition in the individual's on-going personal story.
La prévalence de la maladie cœliaque serait de 1/100 à 1/300 auprès des sujets de type caucasien. Si de nombreuses études quantitatives se sont intéressées aux difficultés rencontrées par les patients, peu de recherches ont questionné l’expérience subjective et le vécu de la maladie cœliaque.
L’objectif de cette étude exploratoire qualitative est d’améliorer la connaissance de l’expérience subjective de la maladie cœliaque et du régime sans gluten des sujets diagnostiqués à l’âge adulte.
Quatorze entretiens non-directifs ont été réalisés auprès de sujets âgés de 28 à 53 ans (m = 41.7, SD = 7.48).
Une analyse phénoménologique interprétative a permis d’identifier différents thèmes recouvrant l’expérience de la maladie : (1) l’histoire de la maladie, (2) les symptômes, (3) l’alimentation, (4) la perception de l’expérience médicale, (5) la relation avec le cercle familial et les amis, (6) les implications psychologiques, et (7) les conséquences dans la vie quotidienne.
Les résultats montrent l’importance de l’élaboration d’une « mythologie » (concernant l’origine de la maladie) pour permettre à la personne d’inclure la maladie dans le prolongement de son histoire personnelle.
A Novel Patient-Derived Conceptual Model of the Impact of Celiac Disease in Adults: Implications for Patient-Reported Outcome and Health-Related Quality-of-Life Instrument Development
2017, Value in Health
Celiac disease is a chronic inflammatory condition with wide ranging effects on individual’s lives caused by a combination of symptoms and the burden of adhering to a gluten-free diet (GFD).
To further understand patients’ experience of celiac disease, the impact it has on health-related quality of life (HRQOL), and to develop a conceptual model describing this impact.
Adults with celiac disease on a GFD reporting symptoms within the previous 3 months were included; patients with refractory celiac disease and confounding medical conditions were excluded. A semistructured discussion guide was developed exploring celiac disease symptoms and impact on patients’ HRQOL. An experienced interviewer conducted in-depth interviews. The data set was coded and analyzed using thematic analysis to identify concepts, themes, and the inter-relationships between them. Data saturation was monitored and concepts identified formed the basis of the conceptual model.
Twenty-one participants were recruited, and 32 distinct gluten-related symptoms were reported and data saturation was reached. Analysis identified several themes impacting patients’ HRQOL: fears and anxiety, day-to-day management of celiac disease, physical functioning, sleep, daily activities, social activities, emotional functioning, and relationships. The conceptual model highlights the main areas of impact and the relationships between concepts.
Both symptoms and maintaining a GFD have a substantial impact on patient functioning and HRQOL in adults with celiac disease. The conceptual model derived from these data may help to design future patient-reported outcomes as well as interventions to improve the quality of life in an individual with celiac disease.
Systematic review with meta-analysis: Dietary adherence influences normalization of health-related quality of life in coeliac disease
2017, Clinical Nutrition
Citation Excerpt :
Heterogeneity was high with I2 values ranging from 71% to 83%. We found 16 out of the 18 included studies eligible for this comparison [5,6,8,23–35] (Table S8). Pooled data of 2728 patients and 1692 controls showed that HRQoL levels of patients were similar to non-coeliac controls for PGWB Total (MD −0.72, 95% CI [−2.71; 1.27]; p = 0.48), but significantly lower for SF-36 MCS (MD −4.09, 95% CI [−6.17; −2.01]; p = 0.0001) and PCS (MD −4.57, 95% CI [−6.97; −2.17]; p = 0.0002) (Fig. 4).
Gluten-free diet is the keystone of coeliac disease treatment. Despite adherence, some patients continue to suffer from symptoms that negatively influence health-related quality of life (HRQoL). Therefore we performed a systematic review and meta-analysis to assess the effect of gluten-free diet on HRQoL in coeliac disease. We specifically sought for determinants that negatively influenced HRQoL.
We systematically searched PubMed, EMBASE, CINAHL, PsycINFO and Cochrane Library for studies assessing HRQoL in untreated or treated adults using validated HRQoL-questionnaires from 1960 to September 2015, comparing HRQoL: (1) before and after gluten-free diet initiation or (2) in patients and non-coeliac controls.
We included eighteen studies and sixteen were suitable for meta-analysis.
Gluten-free diet significantly improves HRQoL, for psychological general well-being (PGWB)-Total (mean difference (MD) 7.34, 95% confidence interval (CI) [1.96; 12.72]; p = 0.008), SF-36 Mental Component Score (MCS) (MD 7.37, 95% CI [1.84; 12.90]; p = 0.009) and SF-36 Physical Component Score (PCS) (MD 5.72, 95% CI [1.50; 9.95]; p = 0.008). Treated patients had similar HRQoL compared with controls for PGWB-Total (MD −0.72, 95% CI [−2.71; 1.27]; p = 0.48), but significantly lower levels for SF-36 MCS (MD −4.09, 95% CI [−6.17; −2.01]; p = 0.0001) and PCS (MD −4.57, 95% CI [−6.97; −2.17]; p = 0.0002). Symptom-detected gluten-free diet adhering patients have lower HRQoL compared with screening-detected patients (MD −3.73, 95% CI [−6.77;−0.69]; p = 0.02) Strict adhering patients have better HRQoL compared with non-strict adhering patients for SF-36 MCS (MD 7.70, 95% CI [4.61; 10.79]; p < 0.00001) and for SF-36 PCS (MD 3.23, 95% CI [1.33; 5.14]; p = 0.0009).
Gluten-free diet significantly improves but does not normalize HRQoL in adults with coeliac disease. Dietary adherence improves HRQoL. Better (self-reported) dietary adherence results in higher HRQoL.

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Case control study on health-related quality of life in adult coeliac disease

Abstract

Digest Liver Dis

Digest Liver Dis

Digest Liver Dis

Gastroenterology

Am J Gastroenterol

Am J Gastroenterol

Clin Gastroenterol

J Clin Epidemiol

Psych Res

Quality of life measures in health care. I: Applications and issues in assessment

Br Med J

Intruments for quality of life assessment in patients with inflammatory bowel disease

Digest Liver Dis

Coeliac disease

Coeliac disease and immunological disorders

Br Med J

High frequency of coeliac disease in adult patients with type-one diabetes

Scand J Gastroenterol

Coeliac disease — associated disorders and survival

Gut