The Diabetes Attitudes, Wishes and Needs Second Study

Studies

Study A. Holt RIG, Nicolucci A, Burns KK, et al., on behalf of the DAWN2 Study Group. Diabetes Attitudes, Wishes and Needs second study (DAWN2): cross-national comparisons on barriers and resources for optimal care—healthcare professional perspective. Diabet Med 2013;30:789–798.

Study B. Nicolucci A, Burns KK, Holt RIG, et al., on behalf of the DAWN2 Study Group. Diabetes Attitudes, Wishes and Needs second study (DAWN2): cross-national benchmarking of diabetes-related psychosocial outcomes for people with diabetes. Diabet Med 2013;30:767–777.

Study C. Burns KK, Nicolucci A, Holt RIG, et al., on behalf of the DAWN2 Study Group. Diabetes Attitudes, Wishes and Needs second study (DAWN2): cross-national benchmarking indicators for family members living with people with diabetes. Diabet Med 2013;30:778–788.

Study D. Peyrot M, Egede LE, Campos C, et al. Ethnic differences in psychological outcomes among people with diabetes: USA results from the second Diabetes Attitudes, Wishes and Needs (DAWN2) study. Curr Med Res Opin 2014, 1–14. Epub ahead of print (DOI: 10.11485/03007995.2014.947023).

Summary

Objectives. The overall purpose of the Diabetes Attitudes, Wishes and Needs second study (DAWN2) was to build on the findings of the original DAWN study (1), determine progress made in achieving the needed actions identified by DAWN stakeholders, and explore new methods and strategies for improving diabetes care (2). The primary objective of DAWN2 was to assess current diabetes care and self-management among people with diabetes (PWDs), family members (FMs), and health care professionals (HCPs) and to elucidate determinants of effective treatment and self-management of diabetes (2).

Secondary objectives included establishing national benchmarks for health status, quality of life, self-care, and access to diabetes self-management education and support (DSME/S); assessing access to, and use and benefit of, support from health care teams, family and friends, communities, and society; identifying and understanding the most important facilitators and barriers to person-centered care; and identifying successes, wishes, needs, preferences, and priorities among key stakeholders in diabetes (2).

Design and methods. In Studies A, B, and C, the DAWN2 survey was administered to >16,000 individuals (8,596 adult PWDs [1,368 with type 1 and 7,228 with type 2 diabetes], 2,057 adult FMs of adult PWDs, and 4,785 HCPs [2,066 primary care physicians/general practitioners, 1,350 diabetes specialists, 827 nurses, and 542 dietitians]) in 17 countries across four continents (2–5). The surveys were group-specific, with items designed to provide cross-group comparisons on common topics. The questionnaires included those from the original DAWN study (1), as well as validated instruments to assess self-management, attitudes/beliefs, disease impact/burden, distress, health-related quality of life, health care provision/receipt, social support, and priorities for future improvement (2). The majority of the questionnaires were completed online or by telephone, and in-person interviews were conducted in countries with limited Internet access. The recruitment was designed to enroll a representative sample of the diabetes population (in terms of geography, age, sex, education level, and disease status) in each of the participating countries (1).

In Study D (6), the U.S. sample was augmented by independent samples of 1,055 adult PWDs from four ethnic groups: non-Hispanic whites (n = 447), African Americans (n = 241), Hispanic Americans (n = 194), and Chinese Americans (n = 172). The objectives of this study were to more specifically assess differences in psychosocial outcomes, risks, and protective factors and to identify correlates of those outcomes (6).

Results. Study A (HCPs): Although there were substantial differences, HCPs in all countries considered current health care in diabetes to be inadequate, with up to one-third of professionals indicating that they had not been given any formal diabetes training. Furthermore, all countries indicated that health care systems are poorly equipped to manage diabetes, including health care organization (30.6%, range 7.4–67.1%), resources for diabetes prevention (78.8%, range 60.4–90.5%) and earlier diagnosis and treatment (67.9%, range 45.0–85.5%), communication between HCPs and PWDs (56.1%, range 22.3–85.4%), and specialist nurse (63.8%, range 27.9–90.7%) and psychosocial support availability (62.7%, range 40.6–79.6%) (3). Sixty percent (range 26.4–81.4%, 12% variance between countries) of HCPs surveyed also indicated that the provision of DSME/S was lacking. Although psychosocial support was considered crucial for diabetes care, only about half (52%) of the HCPs indicated that they ask PWDs how diabetes is affecting their lives. Societal discrimination against PWDs was reported by 32.8% (range 11.4–79.6%) of HCPs (3).

Study B (PWDs): Although there were significant between-country differences for all indicators, no country’s outcomes were consistently better or worse than others (4). The number of PWDs with likely depression (World Health Organization-5 Well-Being Index score ≤28) was 13.8% (range 6.5–24.1%). Diabetes-related distress (score ≥40 on the Problem Areas in Diabetes Scale 5) was reported by 44.6% of those surveyed (range 17.2–67.6%). Overall, quality of life was rated “poor” or “very poor” by 12.2% of participants (range 7.6–26.1%). In addition, PWDs indicated that diabetes had a negative impact on all aspects assessed, ranging from 20.5% on relationship with family/friends to 62.2% on physical health. About 40% (range 18.6–64.9%) reported that their medications negatively affected their ability to live a normal life.

Self-management behaviors were less than optimal in most countries (4). Taking medications and following a diet were reported as most commonly done, with self-monitoring of blood glucose (SMBG) and foot inspections reported as least commonly done, with marked country variation. Only 48.8% reported participation in DSME/S, although 81.1% of PWDs who attended found it very or somewhat helpful. The availability of patient-centered diabetes care and psychosocial support for active engagement was rated as low, with only ∼24% reporting that their HCPs had asked how diabetes affected their lives.

Discrimination due to diabetes was reported by 19.2% (range 9.6–30.3%) (4). Results from the open-ended questions indicated that PWDs experienced negative emotional reactions such as anxiety/fear, worry about hypoglycemia and complications, depression, hopelessness, and discrimination. However, PWDs also demonstrated adaptive ways of coping through a positive outlook and sense of resilience in the midst of having diabetes and reported receiving psychosocial support through caring FMs, friends, HCPs, and other PWDs (7).

Study C (FMs): Information about adult FMs of adult PWDs is limited, and this component of DAWN2 provides insight into issues they face (5). Supporting a family member with diabetes was perceived as a burden by 35.3% (range 10.6–61.7%). Although 51.4% of FMs surveyed (range 22.5–76.0%) rated their quality of life as “good” or “very good,” distress about the PWD was high, with 61.3% (range 31.5–86.4%) concerned about hypoglycemia. More than half (51.8%, range 46.9–58.6%) indicated that diabetes negatively affected several aspects of their lives, with the greatest effect on emotional well-being (44.6%, range 31.8–63.0%). Many of the FMs responded that they did not know how to best help their loved one with diabetes (37.1%, range 17.5–53.0%) but wanted greater involvement (39.4%, range 15.5–61.7%). Less than one-fourth had participated in DSME/S (23.1%, range 9.4–43.3%), although 72.1% (range 42.1–90.3%) of those who did found it helpful (5).

Study D (U.S. results): To better understand the experiences of people with diabetes in the United States, an independent multivariate analysis was conducted to examine ethnic differences in psychosocial outcomes and risk/protective factors (disease, demographic and socioeconomic factors, health status and health care access/utilization, perceived burden of diabetes, and social support/burden) for these outcomes (6). Separate analyses were done for each ethnicity to determine whether these factors varied across groups. After adjusting for diabetes type/treatment, disease duration, sex, age, and socioeconomic status, there were significant overall group differences for BMI, self-rated health, health index, frequency of hypoglycemia and severe hypoglycemia, frequency of physician and other HCP visits, barriers to access, patient-centered care, worry about hypoglycemia, dietary restrictions, and all measures of social burden and support.

The ethnic minority groups were generally similar in their results and all varied significantly from the white non-Hispanic PWDs. They reported more positive psychological well-being and better quality of life, experienced less negative impact, and felt more empowered about diabetes compared to the white non-Hispanic PWDs. The only exception was diabetes-related distress, with all ethnic minority groups reporting significantly greater levels of distress than non-Hispanic whites. Among the U.S. participants, 64% of PWDs and 35% of FMs took part in formal DSME/S. Most (78 and 70%, respectively) found it helpful (6).

Conclusions. Table 1 shows key findings from each of the populations studied in DAWN2 and the differences among the four ethnic groups studied in the United States. Both the overall results and results from each component demonstrate that diabetes represents a significant burden for PWDs, FMs, HCPs, health care systems, and society.

Commentary

The original DAWN study, completed in 2001 (8), indicated that diabetes self-management was less than optimal, in large part because of psychosocial issues. Diabetes-related distress and depression were common but rarely assessed or treated. In addition, access to team care and communication between PWDs and HCPs was associated with better outcomes.

Although there has been an emphasis on personalized approaches to diabetes, shared decision-making, patient engagement, culturally relevant care, and the development of Patient-Centered Medical Homes in recent years, DAWN2 indicates that diabetes care and self-management continue to be lacking, that PWDs and their FMs still experience psychosocial problems as a result of diabetes, and that changes in the health care system have not yet been adequate to improve the experience of PWDs and HCPs. The discrepancy between HCPs and PWDs in assessing the impact of diabetes on daily life (51 vs. 24%) and the numbers of PWDs and FMs who have not received formal DSME/S are of particular concern.

The DAWN2 supplemental U.S. component demonstrated that the ethnic minority groups studied remain underserved and experience greater diabetes-related distress and burden (6). Although other psychosocial measures were more positive for these groups, because diabetes-related distress negatively affects A1C and self-management behaviors, it is likely the most important of these outcomes (9). However, PWDs in minority groups reported more family and social support. Involving FMs in clinical care and DSME/S, teaching FMs how to be more effective supporters, and continuing to emphasize culturally relevant care are all strategies that have the potential to improve outcomes.

DAWN2 reinforces the message that HCPs need to better understand the priorities, psychosocial needs, and goals of PWDs and FMs and the personal context of their daily decision-making and self-management efforts (10). Table 2 outlines strategies that can be used to address these essential issues in clinical care (11). Although health care system changes are clearly needed, DAWN2 provides a call to action for individual HCPs to adopt a person-centered care approach that responds to the identified needs of both PWDs and their FMs.