Healthcare experiences and quality of life of adults with coeliac disease: a cross-sectional study.
Adult
Celiac Disease
/ psychology
Cost of Illness
Cross-Sectional Studies
Diet, Gluten-Free
/ psychology
Female
Health Services Accessibility
Humans
Linear Models
Male
Middle Aged
Patient Acceptance of Health Care
/ psychology
Qualitative Research
Quality of Life
/ psychology
Surveys and Questionnaires
coeliac disease
cross-sectional survey
healthcare services
patient experience
quality of life
Journal
Journal of human nutrition and dietetics : the official journal of the British Dietetic Association
ISSN: 1365-277X
Titre abrégé: J Hum Nutr Diet
Pays: England
ID NLM: 8904840
Informations de publication
Date de publication:
12 2020
12 2020
Historique:
pubmed:
10
5
2020
medline:
14
8
2021
entrez:
9
5
2020
Statut:
ppublish
Résumé
Coeliac disease affects many aspects of quality of life and treatment can be burdensome. Access to healthcare services is necessary for the diagnosis and management of coeliac disease. The present study aimed to investigate the healthcare experiences of adults with coeliac disease and explore the relationship between experiences and quality of life. A cross-sectional postal survey was sent to 800 members of Coeliac UK and contained questions about diagnosis, dietary advice, follow-up appointments, prescriptions, knowledge and information provision, and quality of life [Coeliac Disease Assessment Questionnaire (CDAQ)]. Descriptive statistics were calculated. A total problem score summarised the number of problems experienced with healthcare services. Multiple linear regression analyses were conducted to investigate experiential and demographic factors associated with quality of life. An average of 5.5 problems with healthcare services was reported, with females reporting significantly more problems than males (6.5 versus 5.0, P = 0.003). The total problem score was significantly related to the CDAQ overall index score and all CDAQ dimension scores (stigma, dietary burden, symptoms, social isolation, and worries and concerns) (P < 0.001). The analyses highlighted four key areas of healthcare experiences that were significantly related to quality of life: information provision, general practioners' knowledge, communication with health professionals and access to prescriptions. Poorer experiences of healthcare services in coeliac disease are related to worse quality of life. Improving services in the four key areas identified may help adults with coeliac disease to achieve a better quality of life.
Sections du résumé
BACKGROUND
Coeliac disease affects many aspects of quality of life and treatment can be burdensome. Access to healthcare services is necessary for the diagnosis and management of coeliac disease. The present study aimed to investigate the healthcare experiences of adults with coeliac disease and explore the relationship between experiences and quality of life.
METHODS
A cross-sectional postal survey was sent to 800 members of Coeliac UK and contained questions about diagnosis, dietary advice, follow-up appointments, prescriptions, knowledge and information provision, and quality of life [Coeliac Disease Assessment Questionnaire (CDAQ)]. Descriptive statistics were calculated. A total problem score summarised the number of problems experienced with healthcare services. Multiple linear regression analyses were conducted to investigate experiential and demographic factors associated with quality of life.
RESULTS
An average of 5.5 problems with healthcare services was reported, with females reporting significantly more problems than males (6.5 versus 5.0, P = 0.003). The total problem score was significantly related to the CDAQ overall index score and all CDAQ dimension scores (stigma, dietary burden, symptoms, social isolation, and worries and concerns) (P < 0.001). The analyses highlighted four key areas of healthcare experiences that were significantly related to quality of life: information provision, general practioners' knowledge, communication with health professionals and access to prescriptions.
CONCLUSIONS
Poorer experiences of healthcare services in coeliac disease are related to worse quality of life. Improving services in the four key areas identified may help adults with coeliac disease to achieve a better quality of life.
Types de publication
Journal Article
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
Pagination
741-751Subventions
Organisme : Medical Research Council
Pays : United Kingdom
Organisme : Department of Health
Pays : United Kingdom
Informations de copyright
© 2020 The Authors. Journal of Human Nutrition and Dietetics published by John Wiley & Sons Ltd on behalf of British Dietetic Association.
Références
Mustalahti K, Catassi C, Reunanen A et al. (2010) The prevalence of celiac disease in Europe: results of a centralized, international mass screening project. Ann Med 42, 587-595.
van Heel DA & West J (2006) Recent advances in coeliac disease. Gut 55, 1037-1046.
Singh P, Arora A, Strand TA et al. (2018) Global prevalence of coeliac disease: systematic review and meta-analysis. Clin Gastroenterol Hepatol 16, 823-836.
West J, Otete H, Sultan AA et al. (2019) Changes in testing for and incidence of celiac disease in the United Kingdom: a population-based cohort study. Epidemiology 30, e23-e24.
Coeliac UK (2018). Coeliac Disease Diagnosis Rises to 30% - But Still Missing Half a Million. https://www.coeliac.org.uk/document-library/5437-coeliac-disease-diagnosis-rises-to-30-but-still-missing-half-a/ (accessed February 2019).
Green PH & Cellier C (2007) Celiac disease. N Engl J Med 357, 1731-1743.
Sverker A, Hensing G & Hallert C (2005) 'Controlled by food'- lived experiences of coeliac disease. J Hum Nutr Diet 18, 171-180.
Shah S, Akbari M, Vanga R et al. (2014) Patient perception of treatment burden is high in celiac disease compared with other common conditions. Am J Gastroenterol 109, 1304-1311.
Crocker H, Jenkinson C & Peters M (2018) Quality of life in coeliac disease: qualitative interviews to develop candidate items for the Coeliac Disease Assessment Questionnaire. Patient Relat Outcome Meas 9, 211-220.
Hopper AD, Hadjivassiliou M, Butt S et al. (2007) Adult coeliac disease. BMJ 335, 558-562.
Quarpong W, Card TR, West J et al. (2019) Mortality in people with coeliac disease: long-term follow-up from a Scottish cohort. United European Gastroenterol J 7, 377-387.
Malamut G & Cellier C (2015) Complications of coeliac disease. Best Pract Res Clin Gastroenterol 29, 451-458.
National Institute for Health and Clinical Excellence (NICE) (2009) Coeliac Disease: Recognition and Assessment of Coeliac Disease. London: National Institute for Health and Clinical Excellence.
National Institute for Health and Clinical Excellence (NICE) (2009) Coeliac disease: recognition, assessment and management. London: National Institute for Health and Clinical Excellence. https://www.nice.org.uk/guidance/ng20 (accessed January 2020).
Ciclitira PJ, Dewar DH, McLaughlin SDet al. (2010). The Management of Adults with Coeliac Disease. http://www.bsg.org.uk/images/stories/clinical/bsg_coeliac_10.pdf (accessed September 2016).
Ludvigsson JF, Bai JC, Biagi F et al. (2014) Diagnosis and management of adult coeliac disease: guidelines from the British Society of Gastroenterology. Gut 63, 1210-1228.
Primary Care Society for Gastroenterology (PCSG) (2006). The Management of Adults with Coeliac Disease in Primary Care. https://www.coeliac.org.uk/document-library/1464-primary-care-society-for-gastroenterology-2006/ (accessed January 2020).
National Institute for Health and Care Excellence (NICE) (2016). Coeliac Disease: Quality standard QS134. https://www.nice.org.uk/guidance/qs134 (accessed January 2020).
Coeliac UK in collaboration with The British Dietetic Association and the Primary Care Society for Gastroenterology (2011). Gluten-Free Foods: A Revised Prescribing Guide 2011. https://www.coeliac.org.uk/document-library/378-gluten-free-foods-a-revised-prescribing-guide/ (accessed 21 February 2020).
Kurien M, Trott N, Sleet S et al. (2018) Prescribing gluten-free foods in general practice. Br J Gen Pract 68, 364-365.
Coulter A, Fitzpatrick R & Cornwell J (2009). The Point of Care: Measures of Patients' Experience in Hospital: Purpose, Methods and Uses. https://www.kingsfund.org.uk/sites/default/files/Point-of-Care-Measures-of-patients-experience-in-hospital-Kings-Fund-July-2009_0.pdf (accessed January 2020).
Sizmur S & Redding D (2009). Core Domains for Measuring Inpatients' Experience of Care. https://www.picker.org/wp-content/uploads/2014/10/Core-domains-for-measuring-inpatient-experience-of-care.pdf (accessed January 2020).
Fitzpatrick R (2002) Capturing what matters to patients when they evaluate their hospital care. Qual Saf Health Care 11, 306.
Ahmed F, Burt J & Roland M (2014) Measuring patient experience: concepts and methods. Patient. 7, 235-241.
Great Britain. Department of Health (2016). The NHS Outcomes Framework 2016-17. https://www.gov.uk/government/publications/nhs-outcomes-framework-2016-to-2017 (accessed January 2020).
NHS (2019). The NHS Long Term Plan. https://www.longtermplan.nhs.uk/publication/nhs-long-term-plan/ (accessed: January 2020).
Bebb JR, Lawson A, Knight T et al. (2006) Long-term follow-up of coeliac disease-what do coeliac patients want? Aliment Pharmacol Ther 23, 827-831.
Mahadev S, Simpson S, Lebwohl B et al. (2013) Is dietitian use associated with celiac disease outcomes? Nutrients 5, 1585-1594.
Nörstrom F, Lindholm L, Sandstrom O et al. (2011) Delay to celiac disease diagnosis and its implications for health-related quality of life. BMC Gastroenterol 11, 118.
Peters M, Fitzpatrick R, Doll H et al. (2013) Patients' experiences of health and social care in long-term neurological conditions in England: a cross-sectional survey. J Health Serv Res Policy 18, 28-33.
Häuser W, Stallmach A, Caspary WF et al. (2007) Predictors of reduced health-related quality of life in adults with coeliac disease. Aliment Pharmacol Ther 25, 569-578.
Ukkola A, Mäki M, Kurppa K et al. (2012) Patients' experiences and perceptions of living with coeliac disease - implications for optimizing care. J Gastrointestin Liver Dis 21, 17-22.
Crocker H, Jenkinson C & Peters M (2018) Quality of life in coeliac disease: item reduction, scale development and psychometric evaluation of the Coeliac Disease Assessment Questionnaire (CDAQ). Aliment Pharmacol Ther 48, 852-862.
Bai JC, Fried M, Corazza GR et al. (2013) World Gastroenterology Organisation global guidelines on celiac disease. J Clin Gastroenterol 47, 121-126.
Willis GB & Lessler JT (1999). Question Appraisal System QAS-99. https://www.researchgate.net/publication/267938670_Question_Appraisal_System_QAS-99_By (accessed January 2020).
Willis GB (1999). Cognitive Interviewing: A “How to” Guide’. http://appliedresearch.cancer.gov/archive/cognitive/interview.pdf (accessed August 2016).
Willis GB (2015) Analysis of the Cognitive Interview in Questionnaire Design. New York: Oxford University Press.
Jenkinson C, Coulter A & Bruster S (2002) The Picker Patient Experience Questionnaire: development and validation using data from in-patient surveys in five countries. Int J Qual Health Care 14, 353-358.
Coulter A (2006) Can patients assess the quality of health care? Patients' surveys should ask about real experiences of medical care. Br Med J 333, 1-2.
Nelson M, Mendoza N & McGough N (2007) A survey of provision of dietetic services for coeliac disease in the UK. J Hum Nutr Diet 20, 403-411.
Trott N, Kurien M, Branchi F et al. (2016) Comparing dietitian-led group clinics to individual appointments for newly diagnosed patients with coeliac disease (CD). Gut 65, A292.
Bourne S, DeVos R, North M et al. (2017) Online versus face-to-face pulmonary rehabilitation for patients with chronic obstructive pulmonary disease: randomised controlled trial. BMJ Open 7, e014580.
Gray AM & Papanicolas IN (2010) Impact of symptoms on quality of life before and after diagnosis of coeliac disease: results from a UK population survey. BMC Health Serv Res 10, 105-112.
Violato M & Gray A (2019) The impact of diagnosis on health-related quality of life in people with coeliac disease: a UK population-based longitudinal perspective. BMC Gastroenterol 19, 68.
Preest G (2016). Helping to Diagnose Coeliac Disease in Primary Care. https://www.coeliac.org.uk/research/our-approach/research-conference/research-conference-2016/day-2-diagnosis-and-management-of-coeliac-disease-time-for/helping-to-diagnose-coeliac-disease-in-primary-care-dr-geraint/?preview=true (accessed January 2020).
NHS England (2018). Prescribing Gluten-free Foods in Primary Care: Guidance for CCGs. https://www.england.nhs.uk/wp-content/uploads/2018/11/prescribing-gluten-free-foods-primary-care-guidance-for-ccgs.pdf (accessed January 2020).
Addolorato G, Capristo E, Ghittoni G et al. (2001) Anxiety but not depression decreases in coeliac patients after one-year gluten-free diet: a longitudinal study. Scand J Gastroenterol 36, 502-206.
Ciacci C, Iavarone A, Mazzacca G et al. (1998) Depressive symptoms in adult coeliac disease. Scand J Gastroenterol 33, 247-250.
Fera T, Cascio B, Angelini G et al. (2003) Affective disorders and quality of life in adult coeliac disease patients on a gluten-free diet. Eur J Gastroenterol Hepatol 15, 1287-1292.