ReviewDisease-specific health-related quality of life instruments among adults diabetic: A systematic review
Introduction
The research field in quality of life (QoL) has increased enormously since 1990. As QoL represents the effect of an illness on a patient, as perceived by the patient, and yields complementary information to medical or epidemiological data, it is often used as an outcomes measurement. QoL is commonly recognised as a multidimensional concept including domains of physical health and functioning, mental health, social functioning, satisfaction with treatment, concerns about the future and general well-being. However, QoL is a central issue for patients, providers, and policy makers, and interest in health-related quality of life (HRQoL) has increased markedly in recent years [1]. The term ‘Health-related Quality of Life’ (HRQoL) is used because aspects of life exist that are not generally considered as ‘health’ [2]. HRQoL is the value assigned to duration of life as modified by the impairments, functional states, perceptions, and social opportunities that are influenced by disease, injury, treatment, or policy [3].
Health outcomes research for chronic illness is becoming increasingly concerned with patient's evaluations of the clinical effectiveness of care and treatment. From the point of view of the patient, relevant health outcomes include not only physiological measures, but also subjective factors such as disease self-management burden, social and role functioning, emotional health and physical functioning [4]. These subjective factors are especially important for people with diabetes mellitus because the disease is primarily self-managed and self-management regimens affect virtually all aspects of daily life.
The HRQoL may be studied by generic or disease-specific questionnaires, depending on the research question [1]. Generic instruments are used in general population to assess a wide range of domains applicable to a variety of health states, conditions and diseases [5]. Disease-specific instruments can include aspects of health considered by patients or clinicians to be of greatest importance. The targeted focus of disease-specific instruments has the potential to make them more responsive to changes in health and together with more detailed and accurate assessment of patients concerns, this makes them important primary endpoints in clinical trials designed to measure changes in HRQoL.
There are a considerable number of measures of HRQoL specific to diabetes. This can be confusing for clinicians and researchers who are interested in measuring the HRQoL of patients with diabetes but are faced with several instruments offering different approaches to measurement. This paper provides a systematic review of diabetes-specific measure of HRQoL, with a focus on content and measurement properties.
Section snippets
Search strategy
Search strategies for this review were designed to retrieve references relating to the development of measures of HRQoL for people with diabetes, including reviews of such instruments. MEDLINE was searched through PubMed (30 January 2007) using the following MeSH terms: ‘quality of life’, and ‘diabetes mellitus’. Other electronic databases including Scopus and Proqolid were searched. A hand-search was conducted of relevant journals (e.g. Quality of Life Research, from 1996 to January 2007;
Results
The initial search of the MEDLINE database used the MeSH term “quality of life” yielded 58,712 articles. The addition of “diabetes mellitus” diminished the number to 1433 articles, of which 378 were potentially suitable for inclusion. On Scopus, 119,724 articles were yielded using the term “quality of life” which is diminished to 3994 when the term “diabetes mellitus” was added. Among them 536 articles were potentially suitable for inclusion. Thirty-one instruments were founded in the database
Discussion
The past few decades have witnessed considerable research about HRQoL, leading to the development and refinement of a number of diabetes-specific HRQoL measures. This systematic review has focused on instruments developed for assessing HRQoL in patients with diabetes.
On the basis of the review, the following measures: DCP, DIMS, DQOL, DSQOLS and the D-39 are recommended in research in which a broad conceptualisation of diabetes-specific QoL is appropriate. DQLCTQ-R had relevant domains on HRQoL
Conflict of interest statement
The authors state that they have no conflict of interest.
Acknowledgements
We thank Mr Ali BAIZ for correcting manuscript language and Mohamed BERRAHO for his assistance.
Grant support: No sources of funding were used to assist in the preparation of this review.
References (65)
Life-style modification for weight control to improve diabetes health status
Patient Educ. Couns.
(1994)- et al.
Developing outcome measures for ambulatory care: an application to asthma and diabetes
Soc. Sci. Med.
(1995) - et al.
Development and validation of the insulin treatment satisfaction questionnaire
Clin. Therapeut.
(2004) - et al.
Developing a quality of life measure for Chinese patients with diabetes
Diabet. Res. Clin. Pract.
(1999) - et al.
Current concepts in validity and reliability for psychometric instruments: theory and application
Am. J. Med.
(2006) - et al.
Quality of life and diabetes
Diabet. Metab. Res. Rev.
(1999) - et al.
Measuring health-related quality of life
Ann. Intern. Med.
(1993) - Health outcomes methodology [no authors listed], Med. Care 38 (2000)...
The outcomes movement and health status measures
J. Allied Health
(1995)- Mapi Research Institute, Instruments by Pathology/Disease, Available from www.qolid.org. Accessed on February...
Patient-assessed health outcome measures for diabetes: a structured review
Diabet. Med.
Health-related quality of life among adults with diabetes
Curr. Diabet. Rep.
Measurement of health-related QOL in diabetes mellitus
Pharmacoeconomics
Reliability and validity of the appraisal of diabetes scale
J. Behav. Med.
The development of an individualized questionnaire measure of perceived impact of diabetes on quality of life: the ADDQoL
Qual. Life Res.
The development of an instrument for assessing the quality of life of people with diabetes: diabetes-39
Med. Care
Development and validation of the Diabetes Care Profile
Eval. Health Prof.
Assessing psychosocial distress in diabetes: development of the Diabetes Distress Scale
Diabet. Care
The diabetes health profile (DHP): a new instrument for assessing the psychosocial profile of insulin requiring patients: development and psychometric evaluation
Qual. Life Res.
Measurement of Health Status in diabetic patients: diabetes impact measurement scales
Diabet. Care
Development and validation of the diabetes quality of life clinical trial questionnaire
Med. Care
Reliability and validity of a diabetes quality-of-life measure for the diabetes control and complications trial (DCCT)
Diabet. Care
Validation of a diabetes-specific quality-of-life scale for patients with type 1 diabetes
Diabet. Care
Development of elderly diabetes burden scale for elderly patients with diabetes mellitus
Geriatr. Gerontol. Int.
Validity and reliability of an instrument for assessing health-related quality of life and treatment preferences: the insulin delivery system rating questionnaire
Diabet. Care
Dimensions of quality of life in people with non-insulin-dependent diabetes
Qual. Life Res.
Assessment of diabetes-related distress
Diabet. Care
Psychomentric properties of the questionnaire on stress in patients with diabetes: revised (QSD-R)
Health Psychol.
Well-being enquiry for diabetics: a new measure of diabetes-related quality of life
Diabet. Nutr. Metab.
Diabetes support groups improve health care of older diabetic patients
J. Am. Geriatr. Soc.
Cited by (133)
Psychosocial evaluation in adults with cystic fibrosis-related diabetes: A cross-sectional study
2023, Journal of Psychosomatic ResearchUse of Patient-Reported Outcomes for Assessing Diabetes Outcomes
2022, Endocrinology and Metabolism Clinics of North AmericaDesign and psychometrics for new measures of health-related quality of life in adults with type 1 diabetes: Type 1 Diabetes and Life (T1DAL)
2021, Diabetes Research and Clinical PracticeAssessment of Quality of Life in Gestational Diabetes Mellitus Care—Study Protocol of the GDM-QOL Project
2024, Healthcare (Switzerland)