Review
Disease-specific health-related quality of life instruments among adults diabetic: A systematic review

https://doi.org/10.1016/j.diabres.2007.12.020Get rights and content

Abstract

This paper provides a systematic review on health-related quality of life (HRQoL) measures in diabetic patients. For each included study, a description of the measure and its psychometric findings is provided. To evaluate these measures, a databases search (Medline, Scopus and Proqolid) was undertaken to identify relevant publications. Instruments were assessed according to predefined inclusion and exclusion criteria.

Sixteen instruments met the inclusion criteria among 1049 references produced: appraisal of diabetes scale (ADS), audit of diabetes-dependent quality of life (ADDQoL), diabetes-39 (D-39), diabetes care profile (DCP), diabetes distress scale (DDS), diabetes health profile (DHP-1, DHP-18), diabetes impact measurement scales (DIMS), diabetes quality of life measure (DQOL), diabetes quality of life clinical trial questionnaire-revised (DQLCTQ-R), diabetes-specific quality of life scale (DSQOLS), elderly diabetes burden scale (EDBS), insulin delivery system rating questionnaire (IDSRQ), quality of life with diabetes questionnaire (LQD), problem areas in diabetes scale (PAID), questionnaire on stress in diabetic patients-revised (QSD-R) and well-being enquiry for diabetics (WED). All those instruments have been developed in northern countries. The shortest instrument (ADS) has seven items and the longest (IDSRQ) has 67 items. ADDQoL was widely translated followed by DHP and PAID. Only authors of ADS and DIMS have not involved patients in the construction of instruments. The authors of instruments: ADS, ADDQoL, DHP, D-39, and PAID reported the item-total correlation which is ranged from 0.28 to 0.84. The ADS, DQOL, EDBS, IDSRQ, LQD, PAID, QSD-R, and WED have been assessed for test–retest reliability which varies between 0.27 and 0.99. The DQLCTQ-R, DQOL and IDSRQ were not subjected to factor analysis. Responsiveness was assessed in PAID with effect sizes and ranged from 0.32 to 0.65 for interventions. Four domains were responsive to clinical change in metabolic control in DQLCTQ-R. The other instruments were not been formally assessed for responsiveness.

This review found evidence that the instruments: ADDQoL, D-39, DDS, DHP1/18, DSQOLS, EDBS and QSD-R had adequate psychometric properties. For future research, responsiveness should be a priority and further study is also required to examine the effect of ethnicity and to determine the validity of these scales in developing countries.

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)

  • A.M. Garratt et al.

    Patient-assessed health outcome measures for diabetes: a structured review

    Diabet. Med.

    (2002)
  • S.L. Norris

    Health-related quality of life among adults with diabetes

    Curr. Diabet. Rep.

    (2005)
  • K. Watkins et al.

    Measurement of health-related QOL in diabetes mellitus

    Pharmacoeconomics

    (2004)
  • Scientific Advisory Committee of the Medical Outcomes Trust, Assessing health status and quality of life instruments:...
  • R. Fitzpatrick, C. Davey, M.J. Buxton, D.R. Jones, Evaluating patient based outcome measures for use in clinical...
  • M.P. Carey et al.

    Reliability and validity of the appraisal of diabetes scale

    J. Behav. Med.

    (1991)
  • C. Bradley et al.

    The development of an individualized questionnaire measure of perceived impact of diabetes on quality of life: the ADDQoL

    Qual. Life Res.

    (1999)
  • J.G. Boyer et al.

    The development of an instrument for assessing the quality of life of people with diabetes: diabetes-39

    Med. Care

    (1997)
  • J.T. Fitzgerald et al.

    Development and validation of the Diabetes Care Profile

    Eval. Health Prof.

    (1996)
  • W.H. Polonsky et al.

    Assessing psychosocial distress in diabetes: development of the Diabetes Distress Scale

    Diabet. Care

    (2005)
  • K. Meadows et al.

    The diabetes health profile (DHP): a new instrument for assessing the psychosocial profile of insulin requiring patients: development and psychometric evaluation

    Qual. Life Res.

    (1996)
  • G.S. Hammond et al.

    Measurement of Health Status in diabetic patients: diabetes impact measurement scales

    Diabet. Care

    (1992)
  • W. Shen et al.

    Development and validation of the diabetes quality of life clinical trial questionnaire

    Med. Care

    (1999)
  • A.M. Jacobson et al.

    Reliability and validity of a diabetes quality-of-life measure for the diabetes control and complications trial (DCCT)

    Diabet. Care

    (1988)
  • U. Bott et al.

    Validation of a diabetes-specific quality-of-life scale for patients with type 1 diabetes

    Diabet. Care

    (1998)
  • A. Araki et al.

    Development of elderly diabetes burden scale for elderly patients with diabetes mellitus

    Geriatr. Gerontol. Int.

    (2003)
  • M. Peyrot et al.

    Validity and reliability of an instrument for assessing health-related quality of life and treatment preferences: the insulin delivery system rating questionnaire

    Diabet. Care

    (2005)
  • A. Hirsch et al.

    Dimensions of quality of life in people with non-insulin-dependent diabetes

    Qual. Life Res.

    (2000)
  • W.H. Polonsky et al.

    Assessment of diabetes-related distress

    Diabet. Care

    (1995)
  • P. Herschbach et al.

    Psychomentric properties of the questionnaire on stress in patients with diabetes: revised (QSD-R)

    Health Psychol.

    (1997)
  • E. Mannucci et al.

    Well-being enquiry for diabetics: a new measure of diabetes-related quality of life

    Diabet. Nutr. Metab.

    (1996)
  • J.L. Gilden et al.

    Diabetes support groups improve health care of older diabetic patients

    J. Am. Geriatr. Soc.

    (1992)
  • Cited by (133)

    • Use of Patient-Reported Outcomes for Assessing Diabetes Outcomes

      2022, Endocrinology and Metabolism Clinics of North America
      Citation Excerpt :

      PROs are commonly assessed through questionnaires, called PRO instruments or PRO measures (PROMs), which offer a direct and systematic way to assess a patient’s perception of their overall physical and mental well-being, disease symptoms, treatment side effects, and health-related quality of life (HR-QoL).5,6 These assessments can be one-dimensional or multidimensional and can take less than 5 min to longer than 30 min to complete.7 Although diabetes control is often evaluated by objective and measurable outcomes such as the hemoglobin A1c levels, PROs offer unique insights into the patient’s experience with the treatment and may reveal unintended outcomes that would have otherwise not been captured.

    • Design 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 Practice
      Citation Excerpt :

      Researchers conceptualize diabetes-specific HRQOL in various ways, and use many different measures to capture this construct (or specific aspects of the construct) [7]. Gaps in the availability of validated measures of diabetes-specific HRQOL for adults with type 1 diabetes and characteristics of existing measures limit their utility for research and clinical purposes [2,7–9]. Reviews of diabetes HRQOL measures [2,7–10] have identified common concerns with the conceptual, psychometric, and logistical aspects of existing measures.

    View all citing articles on Scopus
    View full text