Living with diabetes: rationale, study design and baseline characteristics for an Australian prospective cohort study

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Abstract

Background

Diabetes mellitus is a major global public health threat. In Australia, as elsewhere, it is responsible for a sizeable portion of the overall burden of disease, and significant costs. The psychological and social impact of diabetes on individuals with the disease can be severe, and if not adequately addressed, can lead to the worsening of the overall disease picture. The Living With Diabetes Study aims to contribute to a holistic understanding of the psychological and social aspects of diabetes mellitus.

Methods/Design

The Living With Diabetes Study is a 5-year prospective cohort study, based in Queensland, Australia. The first wave of data, which was collected via a mailed self-report survey, was gathered in 2008, with annual collections thereafter. Measurements include: demographic, lifestyle, health and disease characteristics; quality of life (EQ-5D, ADDQoL); emotional well-being (CES-D, LOT-R, ESSI); disease self-management (PAM); and health-care utilisation and patient-assessed quality of care (PACIC). 29% of the 14,439 adults who were invited to participate in the study agreed to do so, yielding a sample size of 3,951 people.

Discussion

The data collected by the Living With Diabetes Study provides a good representation of Australians with diabetes to follow over time in order to better understand the natural course of the illness. The study has potential to further illuminate, and give a comprehensive picture of the psychosocial implications of living with diabetes. Data collection is ongoing.

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Most cited references 37

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Development and validation of the Patient Assessment of Chronic Illness Care (PACIC).

Russell E. Glasgow, Edward H Wagner, Judith Schaefer … (2005)

There is a need for a brief, validated patient self-report instrument to assess the extent to which patients with chronic illness receive care that aligns with the Chronic Care Model-measuring care that is patient-centered, proactive, planned and includes collaborative goal setting; problem-solving and follow-up support. A total of 283 adults reporting one or more chronic illness from a large integrated health care delivery system were studied. Participants completed the 20-item Patient Assessment of Chronic Illness Care (PACIC) as well as measures of demographic factors, a patient activation scale, and subscales from a primary care assessment instrument so that we could evaluate measurement performance, construct, and concurrent validity of the PACIC. The PACIC consists of 5 scales and an overall summary score, each having good internal consistency for brief scales. As predicted, the PACIC was only slightly correlated with age and gender, and unrelated to education. Contrary to prediction, it was only slightly correlated (r = 0.13) with number of chronic conditions. The PACIC demonstrated moderate test-retest reliability (r = 0.58 during the course of 3 months) and was correlated moderately, as predicted (r = 0.32-0.60, median = 0.50, P < 0.001) to measures of primary care and patient activation. The PACIC appears to be a practical instrument that is reliable and has face, construct, and concurrent validity. The resulting questionnaire is in the public domain, and recommendations for its use in research and quality improvement are outlined.

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Do increases in patient activation result in improved self-management behaviors?

Judith Hibbard, Eldon R. Mahoney, Ronald Stock … (2007)

The purpose of this study is to determine whether patient activation is a changing or changeable characteristic and to assess whether changes in activation also are accompanied by changes in health behavior. To obtain variability in activation and self-management behavior, a controlled trial with chronic disease patients randomized into either intervention or control conditions was employed. In addition, changes in activation that occurred in the total sample were also examined for the study period. Using Mplus growth models, activation latent growth classes were identified and used in the analysis to predict changes in health behaviors and health outcomes. Survey data from the 479 participants were collected at baseline, 6 weeks, and 6 months. Positive change in activation is related to positive change in a variety of self-management behaviors. This is true even when the behavior in question is not being performed at baseline. When the behavior is already being performed at baseline, an increase in activation is related to maintaining a relatively high level of the behavior over time. The impact of the intervention, however, was less clear, as the increase in activation in the intervention group was matched by nearly equal increases in the control group. Results suggest that if activation is increased, a variety of improved behaviors will follow. The question still remains, however, as to what interventions will improve activation.

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Quality of life and diabetes.

R R Rubin, M Peyrot (1999)

Quality of life is an important health outcome in its own right, representing the ultimate goal of all health interventions. This paper reviews the published, English-language literature on self-perceived quality of life among adults with diabetes. Quality of life is measured as physical and social functioning, and perceived physical and mental well-being. People with diabetes have a worse quality of life than people with no chronic illness, but a better quality of life than people with most other serious chronic diseases. Duration and type of diabetes are not consistently associated with quality of life. Intensive treatment does not impair quality of life, and having better glycemic control is associated with better quality of life. Complications of diabetes are the most important disease-specific determinant of quality of life. Numerous demographic and psychosocial factors influence quality of life and should be controlled when comparing subgroups. Studies of clinical and educational interventions suggest that improving patients' health status and perceived ability to control their disease results in improved quality of life. Methodologically, it is important to use multidimensional assessments of quality of life, and to include both generic and disease-specific measures. Quality of life measures should be used to guide and evaluate treatment interventions. Copyright 1999 John Wiley & Sons, Ltd.

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Author and article information

Journal

Journal ID (nlm-ta): BMC Public Health

Journal ID (iso-abbrev): BMC Public Health

Title: BMC Public Health

Publisher: BioMed Central

ISSN (Electronic): 1471-2458

Publication date Collection: 2012

Publication date (Electronic): 5 January 2012

Volume: 12

Page: 8

Affiliations

[1 ]School of Population Health, University of Queensland, Brisbane, Queensland, Australia

[2 ]Genetics and Population Health Division, Queensland Institute of Medical Research, Brisbane, Queensland, Australia

[3 ]University of Queensland, Room 119, Level 2, Public Health Building, Herston, Brisbane, Qld 4006, Australia

Article

Publisher ID: 1471-2458-12-8

DOI: 10.1186/1471-2458-12-8

PMC ID: 3315418

PubMed ID: 22216947

SO-VID: f8685511-043f-40f0-b394-2ee26f0a04ca

License:

This is an Open Access article distributed under the terms of the Creative Commons Attribution License ( http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Living with diabetes: rationale, study design and baseline characteristics for an Australian prospective cohort study

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Abstract

Background

Methods/Design

Discussion

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Global Health Next Generation Network

Most cited references 37

Development and validation of the Patient Assessment of Chronic Illness Care (PACIC).

Do increases in patient activation result in improved self-management behaviors?

Quality of life and diabetes.

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