The Dawn (Diabetes: Attitudes, Wishes and Needs) of Type 2 Diabetes Mellitus in Trinidad, A Small Middle Income Developing Country
Authored by Kameel Mungrue
Abstract
Objective: To investigate how people with T2DM
perceive diabetes care and to establish a person-centred model that
emphasizes the individual needs of the patient, in the context of
current chronic care, education and psychological support and
self-management.
Design and Methods: This was a cross-sectional
observational study conducted at the Arima and Sangre Grande Health
Facilities. Questionnaires, which were constructed using internationally
validated questionnaires, were administered by interview among adult
patients with diabetes.
Results: Of the301 participants entered into the
study the age at diagnosis gradually decreased as well as the highest
proportion of cases shifted from 69 years to the 49-58 and 59-68 age
groups. 169 people ranked between 0-3 on the PAID-5 scale, indicating
that 56.1% of the sample experienced no real emotional distress or
depression as a result of their diabetic condition. At one site a total
of 46.9% of people felt that their care was well organized most of the
time to all of the time while at the other site, 63.5% of people felt
that their health care was well organized most of the time to all of the
time. Furthermore, patient adherence to diet and exercise interventions
were poor, compared with the use of medications. Of the patients
interviewed, 58.5% had never taken part in any diabetes educational
programme.
Conclusion: Psychosocial problems are prevalent in
our setting. Issues with patient satisfaction, compliance and education
need to be addressed to holistically meet the needs of the patient.
TTO: Trinidad and Tobago; DAWN: Diabetes Attitudes Wishes and Needs; PWD: People With Diabetes; RHA: Region Health Authorities; PHCF: Primary Health Care Facilities; BMI: Body Mass Index
Introduction
According to the World Health Organisation (WHO), the
number of adults living with type 2 diabetes (T2DM) has almost
quadrupled since 1980 to 422 million in 2016, accounting for 1.5 million
deaths in 2012 [1]. The new report calls upon governments to ensure
that people are able to make healthy choices and that health systems are
able to diagnose, treat and care for people with diabetes. Rapid
economic development accompanied by environmental, social and
behavioural change occurred in many low and middle-income countries
(LMICs) since the 1980s. In fact the epidemiological transition
characterized by falling infectious disease rates with increasing rates
in non- communicable diseases occurred in Trinidad and Tobago (TTO) as
far back as 1947 [2]. The prevalence of T2DM in TTO range from 78-112
per 1000 population, The Ministry of Health estimates the prevalence of
T2DM at 111 per 1000 population or 1 in 8 adults [3]. The economic
burden -for the supply of medical treatments and therapeutic
interventions, as well as delivering optimal healthcare services-
impacts adversely on an already overburdened health system. Barcelo and
collegues placed TTO in group 1 countries with an expenditure for T2DM
per capita gross national product (GNP) >6000 (USD) and an average
cost per person of 577(USD) [4].
Despite the provision of dedicated services such as
chronic disease clinics most people with T2DM do not achieve target
blood glucose levels by international guidelines [5,6]. This implies
that optimal management of T2DM go beyond clinical domains. In 2001, the
global Diabetes, Attitudes, Wishes and Needs (DAWN) study provided
insights into the psychosocial challenges faced by people with diabetes
[7]. The study showed that psychosocial problems can be barriers to
achieving adequate glycaemic control [8]. Exploiting the increasing
popularity of social media and the opportunities they provide for social
support, in 2011, international experts and organisations, including
the International Diabetes Federation, the International Alliance of
Patients' Organizations (IAPO) and the Steno Diabetes Centre, in
collaboration with Novo Nordisk implemented the DAWN (2) study [9]. The
DAWN 2 study builds on the experience gained in the behavioral and
psychological sciences since the first DAWN (1) study in 2001 [10]. It
seeks to bridge gaps highlighted by the DAWN(1) study and to bring about
improvements in all strata of health care including the individual,
health care organizations, communities and government policy makers
[11]. A review of the literature found no published data for the
Caribbean.Thus, this is the first study of its kind to explore the
psychosocial challenges among patients with T2DM, in Trinidad.
Specifically, the study will assess the ability of people with diabetes
(PWD) to self-manage their condition and to determine levels of
psychosocial distress.
The aim of this study is to replicate DAWN(2) among
people with T2DM with particular emphasis on the perception of diabetes
care and to establish a person-centered model that emphasizes the needs
of the individual in the context of current chronic care,
self-management, education and psychological support. In addition the
study also aims to identify the shortfalls of the current health system
in Trinidad and Tobago in regard to care delivered to patients with
T2DM. Further to identify causes of patient non-compliance, avenues
facilitate dialogue and collaboration to strengthen patient involvement
and improve self-management and psychosocial support in diabetes care
and to establish a validated survey system for assessing and
benchmarking psychosocial and educational aspects of diabetes care
delivery across the Caribbean.
Methods
We used a prevalence study design. The population
consisted of all adult patients (>18 years) with T2DM seeking care at
primary health care facilities (PHCF). We used a multistage sampling
process. Trinidad is divided into four region health authorities (RHA)
for the purposes of delivering health care. In the first stage we
randomly selected two of the four RHA, i.e. RHA-1 and RHA-2. RHA-1 has
15 PHCF and the RHA-2 has 12 PHCF. In the second stage we randomly
selected one PHCF from each RHA. We considered these two PHCF as
clusters therefore all clients attending these PHCF were eligible for
entry into the study. We choose one facility to avoid varying clinical
practices and to control simultaneously for the possible confounding
effects of the different variables.
All patients with a physician diagnosis of T2DM or a
fasting blood sugar of >126mg/dL, or a random blood sugar of
>200mg/dL or an HbAlc 7% were eligible for entry into the study. All
patients with gestational diabetes or type 1 diabetes were excluded from
the study. All data were collected using a specifically designed data
collection instrument, which include demographic data, i.e. age, gender,
ethnicity, body mass index (BMI), education level and treatment
together with items from the DAWN (2) questionnaire. In addition, we
also used the Problem Areas in Diabetes Questionnaire, PAID (5). The
PAID measure of diabetes related emotional distress correlates with
measures of related concepts such as depression, social support, health
beliefs, and coping style, as well as predicted future blood glucose
control of the patient. The diagnostic accuracy of the scale is
acceptable, achieving a sensitivity 95% and a specificity rate of 89%. A
major strength of the PAID-5 is that it takes less thanl min to
complete; yet it has comparable 'diagnostic' performance of the
four-item Diabetes Distress Scale [12]. Each question has five possible
answers with a value from 0 to 4, with 0 representing "no problem" and 4
"a serious problem". The scores are added up and multiplied by 1.25,
generating a total score between 0-100. Patients scoring 40 or higher
may be at the level of "emotional burnout" and warrant special
attention.
The Summary of Diabetes Self-Care Activities (SDSCA)
measure is a brief self-report instrument for measuring levels of
self-management across different components of the diabetes regimen
[12]. The SDSCA assesses levels of self-care and not adherence or
compliance to a prescribed regimen because of the difficulties
associated with identifying, for a given patient, a specific unchanging
standard against which behavior should be compared [13-15]. Diabetes
self-care includes a range of activities (e.g., self-monitoring of blood
glucose, eating a low- saturated-fat diet, and checking one's feet) and
it is now well established that these different components do not
correlate highly [14,16,17]. Because self-care is multidimensional, it
is necessary to assess each component separately rather than to combine
scores across components [13]. Hence we focused on the general diet only
exploring the following 5 items (followed your eating plan, fruits and
vegetables, high fat foods, carbohydrates, followed a healthy eating
plan). Participants could respond: not at all during the past 7 days, or
to each of 1-7 days. Scores ranged from 1 (no weekly participation in
diabetes self-care activity) to 8 (participation in diabetes self-care
activities every day during the past week). Item scores were averaged
resulting in an overall score for each item of the self-care activity. A
sample size of 300 was calculated if participants completed the entire
the questionnaire the maximum attainable average is 448, i.e. if all 300
participants performed the activity every day i.e. the desired outcome.
The final component of the study examined perceptions
of diabetic care. This was assessed using the Patient Assessment of
Chronic Illness Care (PACIC) which consisted of twenty (20) items. Each
item was scored 1-5 with the exception of items 1 and 9, which were
scored 0 and 1, in our setting. Hence our mean score varied between
0.9-4.8 in comparison to PACIC scores of 1-5. All questionnaires were
pretested and subsequently adapted to a Trinidadian population. All data
were stored, retrieved and analyzed using SPSS version 22. A value
p<0.05 was considered significant. Ethical approval for this study
was obtained from the Ethics Committee of the University West Indies St.
Results
There were 320 eligible participants who met the
criteria for entry at the two primary care clusters selected. The sample
consisted of 194 (64.5%) participants from one cluster and 107(35.5%)
from the other, thus 301 participants entered the study and 19 refused,
giving a non-response rate of 5.9%. All 301 participants fulfilled the
entry criteria were entered into the study and were available for
analysis. The mean age was 60.78 years (SD�11.5) with an interquartile
range of 51-70 years, table1. There are two major diaspora in Trinidad,
Africans and South East Asians (SEA) both representing approximately 35%
of the population respectively. However T2DM is higher among SEA
compared to Africans [3]. Notwithstanding, 42% of our sample consisted
of participants of Africans and 33.2% were SEA. There were more females
(179, 59.5%) than males 122 (40.5%), f:m 1.5:1.
Participants were asked about their living situation.
The majority reported that they lived with a spouse/partner or children
(151, 34.6%), and only 53(12.2%) participants lived alone. Of those who
lived with children, 96(22%) lived with a child >18years old while
only 52(1.9%) lived with a child <18 years. The majority of
participants in the study were retired (132, 42%), only 82 (26.1%) were
currently employed full time and 19(6.1%) reported that they were unable
to work due either to their T2DM directly or to complications arising.
In Trinidad family support for patients with T2DM is high, as 195(64.8%)
participants said their family was 'very supportive'. Further 98(32.6%)
participants reported that their health care team was 'somewhat
supportive' and 176(58.5%) reported 'very supportive'.
Participants were asked about their living situation.
The majority reported that they lived with a spouse/partner or children
(151, 34.6%), and only 53(12.2%) participants lived alone. Of those who
lived with children, 96(22%) lived with a child >18years old while
only 52(1.9%) lived with a child <18 years. The majority of
participants in the study were retired (132, 42%), only 82(26.1%) were
currently employed full time and 19(6.1%) reported that they were unable
to work due either to their T2DM directly or to complications arising.
In Trinidad family support for patients with T2DM is high, as 195(64.8%)
participants said their family was 'very supportive'. Further 98(32.6%)
participants reported that their healthcare team was 'somewhat
supportive' and 176(58.5%) reported 'very supportive'.
Most participants (285, 94.7%) did not experience
discrimination and stigma even along ethnic lines. Of the small number
of participants 16(5.3%) who felt they were discriminated because of
their T2DM, identified co-worker harassment and judgmental behavior or
failure to be hired as main sources of discrimination.Prospective and
cross-sectional studies consistently point to the fact that diabetic
patients are more likely to develop micro- as well as macro-vascular
complications [18-20] which reduce the quality of life of patients,
incur heavy burdens to the health care system, and increase diabetic
mortality [21-23]. About 50% of the subjects of UKPDS had substantial
macro- or micro-vascular abnormalities at the time of T2DM diagnosis
[24]. We therefore inquired about the common macrovascular (coronary
artery disease, stroke and peripheral vascular disease) and
micromascular (retinopathy, nephropathy and neuropathy) complications
patients were currently experiencing. More than half the number of
participants in the study, 167 (55.5%) had either a mico-or
macrovascular complication. The most common complication reported was
retinopathy (79, 26.3%); other complications included neuropathy (42,
14%) and coronary heart disease (39, 13%). Further sleeping problems
(54, 18%) were more common than sexual dysfunction (5, 1.7%).
Hypertension was the most common comorbidity (46, 15.3%).
Since retinopathy, was the most common complication, a
stepwise logistic regression was performed to determine the risk
factors most likely associated retinopathy. Two significant (p<0.
05), risk factors were identified age and duration of diabetes. Older
participants were twice as likely to develop retinopathy (OR 2.23, 95%CI
1.05-4.96, p=0.038), while the longer the duration of T2DM, the greater
the risk of developing retinopathy (OR 2.89, 95%CI 1.68,4.86, p=0.001).
Current guidelines from the American Diabetes Association/European
Association for the Study of Diabetes (ADA/EASD) and the American
Association of Clinical Endocrinologists/American College of
Endocrinology (AACE/ACE) recommend early initiation of metformin as a
first- line drug for monotherapy and combination therapy for patients
with T2DM [25,26]. Oral antidiabetic agents (OAA) were the most commonly
prescribed and used treatment (242, 80.4%) of which (198, 65.8%) was
prescribed Metformin. Metformin�s first-line position was strengthened
by the United Kingdom Prospective Diabetes Study (UKPDS) observation
that the metformin-treated group had risk reductions of 32% (p=0.002)
for any diabetes-related endpoint, 42% for diabetes-related death
(p=0.017), and 36% for all-cause mortality (p=0.011) compared with the
control group [27]. Insulin therapy was administered to 126(42%)
participants. Most participants (190, 63.1%) reported that they received
all their medication free, but were required to wait for long periods
before receiving them. Of the 111(36.9%) who made out of pocket payments
for some of their medications, (87, 78.4%) indicated its negative
impact on their financial resources.
Living with T2DM requires that patients develop a
range of competencies that allow them to take greater control over the
treatment of their disease. This requires educational programs with the
aim of enhancing active involvement of patients so that they become
partners in their health care process that promotes health and achieves
better outcomes. Although programs are available 176(58.5%) participants
never participated. Of the 126(41.%) who did participate, 18(6.0%)
found it not helpful, 41(13.6%) reported it was somewhat helpful and
80(26.6%) found it very helpful. On the other hand 114(21.7%)
participants relied on doctors/nurses to fulfill this need, and in our
setting family and friends (101, 19.2%) were also an important source of
information.
Participants were asked about the impact of diabetes
on physical health; more participants reported that it negatively
affected their physical health than those who said it did not (112,
37.2%). Also, 122 people stated that diabetes did not affect their
financial situation adversely. Other areas explored were the
relationships with family and friends in which 65 participants reported
that the relationship improved, (171) reported that there was no change,
while . 138(50%) reported that leisure activities was adversely
affected.
Only 105(34.9%) participants reported that they
followed a healthy eating plan daily for the last week, while 42(14.0%)
participants had not followed a healthy eating plan at all. Furthermore,
95(31.6%) participants did not engage in physical activity for 30
minutes or more in any of the previous 7 days. however, a high
proportion of participants (212, 70.4%) reported that they complied with
the doctor's instruction and took their diabetes medication exactly as
prescribed. More than half of the sample also checked their feet daily
(166, 55.1%).
The WHO-Five Well-being Index (WHO-5) was used to
evaluate quality of life. The majority of participants (153,50.8%, score
>71) felt contented with their quality of life, despite having T2DM,
5(1.7%) participants scored <28, which indicates likely depression
while 45(15%) participants scored between 29-49 indicating that they are
at risk for depression.
When the PAID questionnaire was administered two
participants failed to answer all the questions and were therefore
unable to be ranked. We found 169 people ranked between 0-30 on the
PAID5 scale, indicating that 56.1% of the sample experienced no real
emotional distress or depression as a result of their diabetic
condition. There were 44(14.6%) people ranked between 40 and 70. There
were 86 participants ranked between 80 and100, indicating the
possibility of diabetes related distress, which warrants further
assessment.
Using (SDSCA 6) we found that overall performance on
each item as well as an aggregate of all items was poor. Although
105(34.9%) participants followed a healthy eating plan daily for sevens
only 42(14%) did not reduce their fat intake, table 2. The optimal
performance for this category is 478 the attained performance was only
72.8(15.2%). Fruit and vegetable (F & V) consumption was also
consistently poor 22 participants reported that they did not consume F
& V over the past 7 days.
In regard to examination of the feet, 188 people
(62.5%) did not have their feet examined by a healthcare professional.
In addition 215(71.4%) participants mentioned that no one enquired if
they had felt worried or sad. Lastly, 193(64.1%) of people said that no
healthcare professional ever asked about the types of food they ate. In
the previous 12 months, 192(63.8%) participants reported that their
HbA1c was not measured while 91(30.2%) indicated that were not sure if
it had been measured.
We report a mean score of 1.5 for the PACIC arm of
the study. There was a significant difference (p<0.05) between the
two centers studied, more patients (63%) in RHA-1 were satisfied that
their health care needs i.e. "well taken care of ", "most of the time",
compared to RHA-2 (47%). The main complaint was the long waiting times
experienced prior to their consultation. Other complaints included no
written list of instructions or treatment plan were ever given (223,74%)
to follow, and 231(76%) also indicated that there was no discussions on
their current treatment plan, nor were they asked about goals or
targets. The majority of participants (272,90%) reported that they were
not encouraged to attend specific educational interventions. Further
249(83%) of participants reported that their values, beliefs and
traditions were never solicited in regards to their treatment. Few
participants 45(15%) were referred to a dietician and 186(61.8%) said
that they were never asked about problems they were experiencing with
their medication. Apart from the contact in the clinic there was no
other contact between the participant and their doctor/nurse.
Discussion
An important finding of the study was a steady
increase in the number of persons diagnosed and treated with T2DM
between the 1990's and the first decade of the 21st century and the
vulnerability of adolescents and young adults. At the two PHCF studied,
for the first time they admitted patients in the age group 19-28, a
disease once thought to be a metabolic disorder exclusively of adulthood
[28]. This trend in the occurrence of T2DM is not unique to our
setting. For example, in Japan 80% of all new cases of diabetes in
children and adolescents were diagnosed as T2DM [29]. Similar patterns
have been reported in Taiwan [30], and to a less extent in Europe, U.K.
and the U.S.A. [31,32]. T2DM is progressive, and one main factor
responsible for this is a continued decline in p-cell function [33]. In
addition overt T2DM does not occur until the p-cell fails to compensate
appropriately to the peripheral insulin resistance state. The ability of
the p-cell to secrete sufficient insulin to adequately respond to the
peripheral insulin resistance state depends on multiple factors,
including p-cell mass [34] and secretory capacity
[35],which are influenced by genetic and environmental factors
[36].While little can be done in regard to genetic factor, much can be
achieved by tackling environmental factors. Improving the physical
environment
such asincreasing availability of healthy food choices and opportunities
for physical activity together with a structured lifestyle-change
program
is vital to reducing T2DM among people at high risk. Both randomized
clinical trials and real-world implementation studies have proven that
structured
lifestyle-change programs can help prevent or delay T2DM by 60% in
people with prediabetes.
High quality chronic illness care can be defined as
having a PACIC score between 4 and 5 [15], we report for the first time a
score of 1.5. PACIC consist of five (5) subscales; items 1-3 are
Patient Activation which assess actions that solicit patient input and
involvement in decision making; items 4-6 are Delivery System
Design/Decision Support which evaluate actions that organize care and
provide information to patients to enhance their understanding of care;
items 7-11 are Goal Setting, these items evaluate the acquisition of
information for and the setting of specific, collaborative goals; items
12-15 are Problem solving/ Contextual counseling which consider
potential barriers and the individual's social and cultural environment
in making treatment plans; and items 16-20 are Follow Up/Coordination
which evaluates the arrangement of care that extends and reinforces
office based treatment and making proactive contact with patients to
assess progress and coordinate care. Houle et al in 2012 reported a
score of 2.8 while scores of 3.1 and 3.2 have been reported from studies
done in the USA [37]. In the developed world most people report a PACIC
score ranging between 3.1-3.2 [38-46]. This finding therefore suggests a
lower standard of care compared with the developed world. Some
contributing factors included the long waiting times, being unable to
see the same doctor at return visits, lack of empathy from members of
the healthcare team and the consultation was impersonal and was mainly
used to repeat prescriptions. Further there was a lack of diabetes
educational programs and support groups. Emotional distress due to
diabetes was assessed using Problem Areas in Diabetes Scale (PAID)-5,
which has been validated as a reliable tool to assess diabetes emotional
distress [47]. The majority of participants viewed T2DM as a condition,
which they were able to cope with, and showed little to no signs of
worry or anxiety; this finding is consistent with other [48].
The quality of life for diabetic patients was
assessed using the WHO5 Well Being Index. We found 83% of participants
scored greater than 50 indicating that these individuals were generally
in good-high mood. Similar findings have been reported in the literature
[49]. Further 17% of participants had scores below 50 indicative of a
low mood but only 2% had scores below 28 which represents a high risk
group for clinical depression [50]. Although the study was not intended
to measure the prevalence of depression, the finding was markedly
different from the 17% reported by Frederick [51]. Depression is common
among people with diabetes [52], especially among those with diabetic
complications [53]. Depression has been associated with poor adherence
to medication [54], poor glycemic control [55], as well as with the
development of diabetic complications [56] and increased mortality [57].
Several studies focusing on the prevalence of depression in people with
diabetes have been done, showing different depression rates [58,59].
Although participants reported that they were
compliant with prescribed medications and checking their feet as
recommended, they were less compliant with following a healthy diet,
monitoring their blood sugar and getting the recommended 30 minutes or
more of physical activity. Nicolucci et al. [11] in a previous DAWN 2
study found that persons were more likely to follow self-care advice
about medication and diet and less likely to follow blood glucose
testing, physical activity and foot examination guidelines. In Trinidad
and Tobago, there is a free drug distribution program called the Chronic
Disease Assistance Program (CDAP), through which medications such as
insulin and oral antiglycimic agents are available to all citizens. (5)
This may in part contribute to the high compliance in our setting, since
Nicolucci et al. [11] reported that 25% of respondents in the initial
DAWN2 study had difficulty paying for their diabetes medication, which
was contributing to noncompliance. On the other hand blood glucose
monitoring was poor because participants are required to purchase test
strips. Similarly only 50% of participants reported that their HbA1c was
measured over the past year.
Diabetic retinopathy was the main complication among
participants. Using binary logistic regression two significant risk
factors were identified i.e. duration of diabetes (having been diagnosed
with diabetes for more than 10 years) and age over 50. The main
implication of this finding is the demand for ophthalmologists of which
there are few employed in the public health sector. Retinopathy patients
require other types of medication, and this adds to the burden that
diabetes places on the health sector.
The sample of 301 persons was restricted to only two
PHCF and therefore suffers from generalizability. The study cannot
account for undiagnosed T2DM and therefore underestimates disease
burden, mainly due to the study design. Nevertheless, it suggests a
potentially meaningful burden of disease. Thus, we recommend a
nationally representative sample of adolescents and young adults to
address the emerging challenge. The questionnaire length affected
cooperation rates and participants had to be encouraged to participate.
However when this information is combined through a mixed method
approach, robust results can be obtained, which are both comprehensive
and quantifiable, adding an invaluable perspective to the analysis of
the situation.
Conclusion
In conclusion the study provides evidence of the
unmet needs of the patient with T2DM. In a changing world and more so in
the developing world provision of service has to go beyond the
provision of pharmaceutical agents if we are to favorable impact on the
outcomes of chronic noncommunicable diseases such as T2DM.
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