Quality of life and type 1 diabetes: a study assessing patients' perceptions and self-management needs

Dácil Alvarado-Martel, Rebeca Velasco, Rosa M Sánchez-Hernández, Armando Carrillo, Francisco Javier Nóvoa, Ana María Wägner, Dácil Alvarado-Martel, Rebeca Velasco, Rosa M Sánchez-Hernández, Armando Carrillo, Francisco Javier Nóvoa, Ana María Wägner

Abstract

Purpose: The main objective of this study was to assess quality of life (QoL) and treatment satisfaction in a group of patients with type 1 diabetes (T1D) and explore their needs regarding and their perception of QoL living with diabetes.

Materials and methods: Patients with type 1 diabetes attending the outpatient endocrinology clinics of a reference hospital were invited to participate in a cross-sectional study. Clinical and sociodemographic data were obtained (interview and clinical records), and diabetes-related QoL was assessed using a standardized questionnaire. In 67 participants, satisfaction with treatment was also assessed, and an open interview was performed, assessing the impact of diabetes, long-term worries, flexibility, restrictions, and self-perception of QoL. Descriptive statistical analysis, bivariate analysis, and multivariate analysis were performed in order to find factors associated with QoL. Interviews were analyzed and summarized questionwise.

Results: Mean patient age was 31.4±11.6 years, diabetes duration 14.2±9.3 years, and glycated hemoglobin (HbA1c) 8.5%±1.9% (69±20.8 mmol/mol International Federation of Clinical Chemistry [IFCC]). The questionnaires showed good average QoL scores (94.6+22.9) and treatment satisfaction scores (25.7±6.7). QoL worsened with increasing HbA1c, female sex, severity of complications, and lower education (r (2)=0.283, P<0.005). In the open interview, 68.5% of the patients reported that diabetes had changed their lives, 83.5% identified complications as their most important long-term concern, and 59.7% said that they needed more training to manage the disease.

Conclusion: Poor glycemic control, lower education, complications, and female sex are associated with worse QoL. Semi-structured interviews identified aspects not included in the standardized questionnaires.

Keywords: patients’ perceptions; qualitative; quality of life; self-management; type 1 diabetes.

References

    1. The Diabetes Control and Complications Trial Research Group The effect of intensive treatment of diabetes on the development and progression of long-term complications in insulin-dependent diabetes mellitus. N Engl J Med. 1993;329(14):977–986.
    1. Carrillo Dominguez A. Incidence of type 1 diabetes mellitus in the Canary Islands (1995–1996). Epidemiologic Group of the Canary Society of Endocrinology and Nutrition. Rev Clin Esp. 2000;5:257–260.
    1. Belinchón Sz-Somoza BM, Hernández Bayo JA, Cabrera Rodríguez R. Incidence of childhood type 1 diabetes (0–14 yrs) in La Palma Island: 1993–2007. Diabetologia. 2008;51(S1):158.
    1. Rodríguez C, García-Núñez M, Marrero D, et al. Factores predisponentes y tratamiento de la cetoacidosis diabética en el área sur de Gran Canaria. Av Diabetol. 2009;25(supl 1):90.
    1. Anderson RM, Donnelly MB, Dedrick RF. Measuring the attitudes of patients towards diabetes and its treatment. Patient Educ Couns. 1990;16:231–245.
    1. Colagiuri R, Eigenmann CA. A national consensus on outcomes and indicators for diabetes patient education. Diabet Med. 2009;26:442–446.
    1. Aalto AM, Uutela A, Aro AR. Health related quality of life among insulin-dependent diabetics: disease-related and psychosocial correlates. Patient Educ Couns. 1997;30:215–225.
    1. Delamater AM, Jacobson AM, Anderson B, et al. Psychosocial therapies in diabetes: report of the Psychosocial Therapies Working Group. Diabetes Care. 2001;24:1286–1292.
    1. Glasgow RE, Toobert DJ, Gillette CD. Psychosocial barriers to diabetes self-management and quality of life. Diabet Spectrum. 2001;14:33–41.
    1. Kanbara S, Taniguchi H, Sakaue M, et al. Social support, self-efficacy and psychological stress responses among outpatients with diabetes in Yogyakarta, Indonesia. Diabet Res Clin Prac. 2008;80:56–62.
    1. Senécal C, Nouwen A, White D. Motivation and dietary self-care in adults with diabetes: are self-efficacy and autonomous self-regulation complementary or competing constructs? Health Psychol. 2000;19:452–457.
    1. Hahl J, Hämäläinen H, Sintonen H, Simell T, Arinen S, Simell O. Health-related quality of life in type 1 diabetes without or with symptoms of long-term complications. Qual Life Res. 2002;11:427–436.
    1. Rubin RR, Peyrot M. Quality of life and diabetes. Diabetes Metab Res Rev. 1999;15:205–218.
    1. The Diabetes Control and Complications Trial Research Group Influence of intensive diabetes treatment on quality-of-life outcomes in the diabetes control and complications trial. Diabetes Care. 1996;19:195–203.
    1. Hoey H, Aanstoot HJ, Chiarelli F, et al. Good metabolic control is associated with better quality of life in 2,101 adolescents with type 1 diabetes. Diabetes Care. 2001;24:1923–1928.
    1. Weinger K, Jacobson AM. Psychosocial and quality of life correlates of glycemic control during intensive treatment of type 1 diabetes. Patient Educ Couns. 2001;42:123–131.
    1. Tan SMK, Shafiee Z, Wu LL, Rizal AM, Rey JM. Factors associated with control of type I diabetes in Malaysian adolescents and young adults. Int J Psychiatry Med. 2005;35:123–136.
    1. Wikblad K, Leksell J, Wibell L. Health-related quality of life in relation to metabolic control and late complications in patients with insulin dependent diabetes mellitus. Qual Life Res. 1996;5:123–130.
    1. Sparring V, Nyström L, Wahlström R, Jonsson PM, Ostman J, Burström K. Diabetes duration and health-related quality of life in individuals with onset of diabetes in the age group 15–34 years – a Swedish population-based study using EQ-5D. BMC Public Health. 2013;13:377.
    1. Speight J, Reaney MD, Barnard KD. Not all roads lead to Rome-a review of quality of life measurement in adults with diabetes. Diabet Med. 2009;26:315–327.
    1. Gibbons E, Fitzpatrick R. A Structured Review of Patient-Reported Outcome Measures (PROMs) for Diabetes Patient-Reported Outcome Measurement Group 2009. Oxford: Department of Public Health University of Oxford; 2009.
    1. American Diabetes Association Standards of medical care in diabetes-2012. Diabetes Care. 2012;35(suppl 1):S11–S63.
    1. Millán MM, Reviriego J, Del Campo J. Revaluación de la versión española del cuestionario diabetes quality of life (EsDQOL) [Reappraisal of the Spanish version of the diabetes quality of life questionnaire] Endocrinología y Nutrición. 2002;49:322–324.
    1. The DCCT Research Group Reliability and validity of a diabetes quality-of-life measure for the diabetes control and complications trial (DCCT). The DCCT Research Group. Diabetes Care. 1998;11:725–732.
    1. Epidemiology of Diabetes Interventions and Complications (EDIC) Design, implementation, and preliminary results of a long-term follow-up of the Diabetes Control and Complications Trial cohort. Diabetes Care. 1999;22:99–111.
    1. Ramón Gomis JL, Herrera-Pombo A, Calderón C, Rubio-Terrés P. Validación del cuestionario Diabetes Treatment Satisfaction Questionnaire (DTSQ) en la población española. Pharmacoeconomics. 2006;3:7–18.
    1. Peyrot M, Burns KK, Davies M, et al. Diabetes attitudes wishes and needs 2 (DAWN2): a multinational, multi-stakeholder study of psychosocial issues in diabetes and person-centred diabetes care. Diabetes Res Clin Pract. 2013;99(2):174–184.
    1. Machado A, Anarte MT, Ruiz de Adana MS. Predictores de Calidad de Vida en Pacientes con Diabetes Mellitus Tipo 1. Clínica Y Salud. 2010;21:35–47.
    1. Ashwell SG, Bradley C, Stephens JW, Witthaus E, Home PD. Treatment satisfaction and quality of life with insulin glargine plus insulin lispro compared with NPH insulin plus unmodified human insulin in individuals with type 1 diabetes. Diabetes Care. 2008;31(6):1112–1117.
    1. Witthaus E, Stewart J, Bradley C. Treatment satisfaction and psychological well-being with insulin glargine compared with NPH in patients with Type 1 diabetes. Diabet Med. 2001;18:619–625.
    1. Huang ES, Brown SES, Ewigman BG, Foley EC, Meltzer DO. Patient perceptions of quality of life with diabetes-related complications and treatments. Diabetes Care. 2007;30(10):2478–2483.
    1. Jacobson AM, Braffett BH, Cleary PA, Gubitosi-Klug RA, Larkin ME. The long-term effects of type 1 diabetes treatment and complications on health-related quality of life: a 23-year follow-up of the diabetes control and complications/epidemiology of diabetes interventions and complications cohort. Diabetes Care. 2013;36:3131–3138.
    1. Wikby A, Hörnquist JO, Stenström U, Andersson PO. Background factors, long-term complications, quality of life and metabolic control in insulin dependent diabetes. Qual Life Res. 1993;2:281–286.
    1. Guttmann-Bauman I, Flaherty BP, Strugger M, McEvoy RC. Metabolic control and quality-of-life self-assessment in adolescents with IDDM. Diabetes Care. 1998;21:915–918.
    1. Ambler GR, Fairchild J, Crai ME, Cameron FJ. Contemporary Australian outcomes in childhood and adolescence type 1 diabetes: 10 years post the diabetes control and complications trial. J Paediatr Child Health. 2007;43:403–410.
    1. Ingersoll G, Marrero DG. A modified quality of life measure for youths: psychometric properties. Diabetes Educ. 1991;17:114–118.
    1. Grey M, Boland E, Yu C, Sullivan-Bolyai S, Tamborlane WV. Personal and family factors associated with quality of life in adolescents with diabetes. Diabetes Care. 1998;21:909–914.
    1. Trento M, Panero F, Porta M, et al. Piedmont Study Group for Diabetes Epidemiology Diabetes-specific variables associated with quality of life changes in young diabetic people: the type 1 diabetes Registry of Turin (Italy) Nutr Metab Cardiovasc Dis. 2013;23:1031–1036.
    1. Eiser C, Flynn M, Green E, et al. Quality of life in young adults with type 1 diabetes in relation to demographic and disease variables. Diabet Med. 1992;9:375–378.
    1. Singh H, Bradley C. Quality of life in diabetes. Int J Diabet Develop Countries. 2006;26:7–10.
    1. Bradley C. Measuring quality of life in diabetes. Diabet Annu. 1996;10:207–224.
    1. Study Group DAFNE Training in flexible, intensive insulin management to enable dietary freedom in people with type 1 diabetes: dose adjustment for normal eating (DAFNE) randomised controlled trial. Br Med J. 2002;325(7367):746.
    1. Rapley P, Axon S, Babel G, et al. Dose adjustment for normal eating: longer term perspectives of adults with type 1 diabetes. J Diabet Mellitus. 2014;04:179–188.
    1. Watts S, O’Hara L, Trigg R. Living with type 1 diabetes: a by-person qualitative exploration. Psychol Health. 2010;25(4):491–506.
    1. Escudero-Carretero MJ, Prieto-Rodríguez M, Fernandez-Fernandez I, March-Cerda JC. Expectations held by type 1 and 2 diabetes mellitus patients and their relatives: the importance of facilitating the health-care process. Health Expect. 2007;10(4):337–349.
    1. Millan MM, del Campo J, Millan MD, Anton S, Reviriego J. Analysis of the experience of diabetes mellitus through case study: an approach to patient’s quality of life. Med Clin (Barc) 2002;114(suppl 3):90–92.
    1. Isla P. Living with diabetes: quality of care and quality of life. Patient Prefer Adherence. 2011;5:65–72.
    1. Schäfer I, Pawels M, Küver C, et al. Strategies for improving participation in diabetes education. A qualitative study. PLoS ONE. 2014;9(4):e95035.
    1. Sánchez RM, López Plasencia Y, et al. Preliminary evaluation of the ANAIS education programme for type 1 diabetes (T1D): a randomised controlled trial. Diabetes. 2014;63(suppl 1):A17.

Source: PubMed

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