|Year : 2020 | Volume
| Issue : 3 | Page : 131-137
Poor awareness of diabetes self-care among diabetics: Cross-sectional study from an urban poor settlement in Delhi
Gurkirat Kaur, Shomik Ray, Niveditha Devasenapathy
Indian Institute of Public Health-Delhi, Public Health Foundation of India, New Delhi, India
|Date of Submission||02-May-2020|
|Date of Decision||03-Aug-2020|
|Date of Acceptance||26-Aug-2020|
|Date of Web Publication||30-Sep-2020|
Dr. Gurkirat Kaur
GH 5 and 7/1129, Paschim Vihar, New Delhi
Source of Support: None, Conflict of Interest: None
Introduction: Lack of awareness about self-care and misconceptions about diabetes could have a negative impact on diabetes management. We aimed to assess the knowledge, attitude, and practices about diabetes self-care among diabetic individuals.
Subject and Methods: We undertook a community-based quantitative survey in an urban poor colony of West Delhi. Using structured questionnaires, we collected the information on sociodemographic profile, knowledge, and perception regarding diabetes self-care and related expenses, from all consenting self-reported diabetic individuals.
Results: Out of 198 individuals with diabetes from 543 households, 106 completed the interview. The mean age was 53 years, with a median of 5 years since the diagnosis. Equal numbers sought care from the private and government facilities with median expenses on diabetes care being INR 855 (INR 0-3900) per month. Many (28.7%) availed blood glucose tests from nearby government sponsored Mohalla clinic and none had tested hemoglobin A1C. Most (86.7%) were aware of eye complications due to diabetes and least (8.5%) about neuropathic and vascular complications. We found misconceptions regarding medications and physical activity. Perceived ability of following prescribed medications were better than hypoglycemia management and foot-care. Higher perception score was independently associated with the duration of diabetes, higher socioeconomic status, literacy, and those availing government facilities. Most clinic visits involved the prescription of medications and diagnostics without much emphasis on the lifestyle modifications.
Conclusion: Diabetics living in the urban poor settlements have accessibility to medicines and diagnostics. However, there exists misperception regarding diabetes self-care that needs to be addressed through counseling during outpatient clinic visits and effective use of mass media.
Keywords: Diabetes mellitus, perception, self-management
|How to cite this article:|
Kaur G, Ray S, Devasenapathy N. Poor awareness of diabetes self-care among diabetics: Cross-sectional study from an urban poor settlement in Delhi. Int J Non-Commun Dis 2020;5:131-7
|How to cite this URL:|
Kaur G, Ray S, Devasenapathy N. Poor awareness of diabetes self-care among diabetics: Cross-sectional study from an urban poor settlement in Delhi. Int J Non-Commun Dis [serial online] 2020 [cited 2020 Oct 22];5:131-7. Available from: https://www.ijncd.org/text.asp?2020/5/3/131/296789
| Introduction|| |
Diabetes is one of the largest global health emergencies of the 21st century. In India, the prevalence of diabetes in adults aged 20 years or older increased from 5.5% in 1990 to 7.7% in 2016. As per the National Family Health Survey-4 estimates, random blood glucose levels (above 140 mg/d) were higher in men (8%) compared to women (5.8%) and higher in urban (15.7%) compared to the rural (12.6%) communities. The prevalence of diabetes increased with lower socioeconomic status (SES) in the urban areas of seven states (Chandigarh, Tamil Nadu, Punjab, Maharashtra, Andhra Pradesh, and Gujarat), most of which were ranked as economically advanced states of India. It was also observed that in the rural areas, the prevalence for diabetes was higher in individuals with higher SES, suggesting that the diabetic epidemic disproportionately affected the poorer section of the society.
Access to information, awareness about diabetes care, and access to health care are the key pillars for living well with diabetes. It is well-known, effective glycemic control lay in the hand of the diabetic person and can only be achieved if they are aware as well as motivated, with an enabling home and societal environment. Self-care in diabetes has been defined as an “evolutionary process of development of knowledge or awareness by learning to survive with the complex nature of the diabetes in a social context.” There are number of individual related factors that may be responsible for non-adherence to self-care behaviors, as shown in several studies, which include the lack of motivation, lack of self-efficacy, poor health literacy, and impaired disease perception. Previous cross-sectional studies have shown the low level of knowledge to be associated with poor diabetes management., A good patient-provider relationship was also found to be positively correlated with better adherence to medications and better diabetes self-care.
Further, diabetes management means a lot of expenditure in terms of medications, diagnostics, consultations, and life-style modifications along with their associated indirect costs. It was observed that low-income families with one adult may spend around 1/4th of family income on the care of diabetic person.
Hence, given the increasing burden of diabetes among the poor, lack of knowledge and access to diabetes care, it is important to identify the extent of awareness to common knowledge areas in diabetes and out-of-pocket expenses incurred in the management of this disease. Hence, a cross-sectional study was conducted in an urban poor settlement of Delhi to address the following objectives: (1) assess awareness about diabetes-related complications, (2) assess perceived ability to manage diabetes, (3) assess practices related to medication use, life-style, and monitoring of blood glucose, and (4) measure out-of-pocket expenditure associated with diabetes management.
| Subject and Methods|| |
We conducted a community-based, cross-sectional study between December 2017 and January 2018 in a conveniently selected urban poor settlement of West Delhi, Nihal Vihar with an estimated population of 80,000.
The target population were self-declared individuals with diabetes of 18 years and above residing in this area. Their diabetes status was confirmed from their medical records or prescription from a medical practitioner. We excluded pregnant women with gestational diabetes, bedridden, and nonconsenting individuals.
Sample size and sampling
Individuals with diabetes with knowledge regarding the disease, management, or complications ranged from 20% to 75%. Assuming that 50% of our participants would have appropriate knowledge regarding self-care and complications, the sample size of 100 individuals with diabetes would be required to measure this prevalence with 10% absolute precision at 5% alpha. Approximately 500 households had to be approached considering nonresponses and refusal to complete 100 interviews. This was based on the current prevalence estimates (14.2%) of diabetes in the urban areas. Households were randomly sampled [Figure 1].
|Figure 1: It describes the sampling methodology schematically- Out of 543 HHs surveyed, we completed interview from 106 diabetic individuals|
Click here to view
Participants were interviewed for information on socio-demography, current illness, knowledge regarding diabetic care, perceived ability regarding self-care, health literacy, and out-of-pocket expenses related to diabetes care. For capturing health literacy, we adapted a method that captured health literacy of mothers regarding childhood immunization in which we used posters designed by the National Health Mission. The contents of the posters were explained to the participants twice followed by six confirmatory questions to ensure correctness of understanding. Health literacy score was calculated by awarding one mark for correct answer and no mark for incomplete or wrong answer.
Descriptive statistics were used to present sociodemographic information on current illness and diabetes management. Continuous variables were expressed as mean ± standard deviation (SD) or median and inter-quartile range (IQR) based, on their distributional properties. Categorical variables were expressed as the frequencies and percentages. The total perception score on self-care ability was an unweighted average of score from the individual items (n = 9). The total score ranged from 7 to 63 (higher score meant higher perception) We used principal component analysis to categorize households to three socioeconomic groups using information from household assets and dwelling characteristics. We performed an exploratory analysis using univariable and multivariable linear regression to explore sociodemographic determinants associated with of perceived ability for self-care. We used Stata 14.1 (StataCorp 4905 Lakeway Drive College Station, Texas 77845 USA).
Following permission from the local administration, the study protocol was approved by the Institutional Ethical Committee. Written informed consent was obtained from all participants before they were interviewed. To ensure confidentiality and anonymity, no personal identifiers were collected.
| Results|| |
Demographic profile of the participants
One hundred and six individuals with diabetes (response rate 67%) completed the interview [Figure 1]. The mean age of the study population was 54 years with slightly higher percentage of women participants (64%). Majority of household were Hindus (86%), and most of them were living in joint families (77%). Half had undergone formal schooling, but 60% were able to read and write. Relevant sociodemographic details provided in [Table 1].
Diabetes management and self-care practices
The median duration of time since the diagnosis of diabetes was 5 years (IQR 3–10). In half of the participants (54%), the diagnosis of diabetes was done by a doctor, 43% found out by themselves when they chose to undergo blood glucose assessment due to some symptoms and rest (3%) got aware of their diabetes status during a routine blood test. Most of the participants (73%) were on allopathic diabetic medications with a small proportion using both allopathic and alternative therapies (19%) and 8% took only nonallopathic medication. Participants preferred private and government health facilities equally for routine check-up. The median distance of any health facility from their residence was 4 km (IQR 2–6). More than half visited a doctor every month (58%) for routine consultation for diabetes. Almost everybody who visited private or government health facility reported to have got a prescription of medicines and a diagnostic test. Less than half (38%) reported to have received counseling on diet and lifestyle. However, on active probing, 72% reported that they were advised about exercise and 25% about foot care. Only ten participants mentioned that they had learnt general health-related information about diet control, tuberculosis control or immunization from television, health-camps or community health worker. However, no information specifically focused on diabetes was known to participants from these sources.
Around half the participants (46%) thought that it was “OK” to miss medicines when their blood glucose was in normal range. Only 40% of the individuals with diabetes were taking medications when they were fasting for religious reasons while the remaining 60% were missing medicines when fasting.
Several (22%) of the participants felt they should not exert physically as they were suffering from diabetes and 33% of the total participants were engaged in the regular physical activity.
Perceived ability about diabetes self-care
The average perception score about diabetes self-care was 25.8 (SD 7.2) (range 9–50). Out of nine items, their confidence to take medication scored the highest (4.4). However, average score was least (1.3) for perception on the prevention and treatment of low blood glucose levels and foot-care [Figure 2].
|Figure 2: Depicts the questions regarding perceived ability about diabetes self-care. Out of nine items which were asked their confidence to take medication had the highest score (4.4), while confidence regarding foot-care scored lowest (1.3)|
Click here to view
Knowledge and attitude about complications
Among the participants, 80% agreed that this was a preventable disease and 90% agreed that poor sugar control could damage other organs. Most of them (86%) knew that eye complications could happen and a quarter (25%) knew that kidney complications could happen but less than 10% were aware about cardiovascular and neuropathic complications. Lack of awareness on neuropathic complications (8.5%) also reflected in their attitude on importance of use of footwear (20%).
Monitoring blood glucose
Most of the participants (71%) were measuring blood glucose at regular intervals. The median duration for getting blood glucose examination done was 30 days (IQR 10–60). Most (28.7%) got the test done from mohalla clinic(These are clinics setup and monitored by Delhi government to provide quality primary health-care services accessible within the communities in Delhi at their doorstep)which had facility for testing blood glucose. Only half of the individual with diabetes had got an ophthalmic examination and among those who had an ophthalmic check-up the median duration was 12 months.
Of the total possible health literacy score (16) from six items, the mean score was 9.04 (SD 2.3) with range from 4 to 16.
Out of pocket expenses
The median total expenditure incurred on diabetes care that included medication costs, diagnostic tests, doctor's fee, and transport to clinic was INR 855 (IQR 200–1580) per patient per month (range INR 0–3900) [Table 2]. On an average, the monthly median expense for medication was INR 500 (0–810) which is largest among other components. Furthermore, the cost did not vary by private or public consultation as participants equally preferred government and public health facility.
Determinants of perceived ability of diabetes self-care
Better perception score was observed among literates, those who sought care from government health providers and had been suffering from diabetes for longer duration in the univariable analysis. In the multivariable analysis seeking care from government heath provider and longer duration since the time of diagnosis persisted to be statistically significantly associated with the better perception [Table 3]. Literacy status and SES were confounding each other, and hence, in the multivariable model, only SES was associated with the perceptions score. Higher perception scores were seen with higher SES status.
| Discussion|| |
In this community-based cross-sectional study in an urban poor settlement, we found that practices and perception regarding adherence to medication and monitoring of blood glucose were mostly appropriate. Their perceived ability for self-care was poor for hypoglycemia management and foot-care. Prescription of medications and advising diagnostic tests seemed to be the key role of health-care providers with less focus on providing counseling on secondary prevention. Inadequate knowledge and misconceptions about diet and physical activity were also observed.
Knowledge and attitude about complications
In our study, 80% agreed that diabetes was a preventable disease which is similar to previous study from an urban poor community done in Delhi. Better awareness regarding eye-related complication when compared to other complications we observed was similar to other surveys conducted in urban slum of Delhi and at a tertiary hospital in Kolkata., Only 10% aware of neuropathic complications, similarly other studies have also shown poor knowledge about foot-care., This is an important finding because lower limb amputation rates are 10–20 times higher among individuals with diabetes than nondiabetics.
Knowledge and practice about blood glucose monitoring
In our study, we found most of the individuals were performing the blood glucose estimation, more frequently than required (National Health Portal- Gateway to authentic health information www.nhp.gov.in. Blood glucose test Blood glucose: Controlled (HbA1c <7%)- every 3 months, Uncontrolled – every 2 weeks until sugar level achieved HbA1c: Controlled (HbA1c <7%)- every 6 months to 1 year, Uncontrolled – every 3 months). None of the participants had performed hemoglobin A1C (HbA1c) test and almost all of them were performing fasting or random glucose test on a monthly basis at local private labs or at mohalla clinics, which was not reflective of long-term control. While the mohalla clinic lists HbA1c as one of the available diagnostic tests, none of the participants had undergone this test. Since these clinics were set up only few year ago it is probable that all services were not initiated. However, the aim of these clinics in providing screening and monitoring of diabetes and other noncommunicable diseases is a very encouraging public health initiative that could reduce out-of-pocket expenses. Further, HbA1c is three times more expensive than a blood glucose test (fasting/random) when done from a private local lab and this could a reason, along with the lack of awareness of the use of HbA1c.
In a survey of patients attending diabetic clinic, conducted in a medical college hospital in Gujarat, 70% felt that hypoglycemia was more dangerous than hyperglycemia. In our survey, though we did not ask question directly on dangers of hypoglycemia, most of them (68%) were not confident of managing a hypoglycemic episode.
Better adherence to prescribed medications was similar to other studies which reported 79.1% and 81.3% were adherent to diabetic medication., We did not collect the adherence of medication using the validated scale, and this finding was based on one question. Fasting for religious and personal reasons is a common practice in India. In this survey, 40% felt that missing diabetes medicines during fasting was acceptable. This finding was concordant with other studies in which diabetics who fasted regularly were at risk of adverse glycemic events. A review paper by Arouj et al. gives recommendations for modifying the diabetic medication during fasting, monitoring of blood glucose levels, and the importance of adequate fluid intake during fasting. It is important that care providers are familiar with the advice to be given to patients while they observe fasting.
Knowledge, attitude, and practices about nutrition and lifestyle
It is known that healthy planned eating and regular exercise in delaying diabetes and its complications. In this study, we observed that individuals with diabetes relied mostly on medications and dietary restriction (rather than modification) for diabetes control while neglecting other lifestyle modifications such as physical activity. Only 33% reported to do some form of physical activity like leisure walking and none had programmed physical activity schedule. While there could be several reasons for not being physically active, one of the reasons of not being physically active could be misconception that physical activity should be restricted during any illness. This finding is similar to a study where only 32.8% were compliant in doing required level of physical activity.
Health literacy is the degree to which individuals have the capacity to obtain, process and understand basic health information and services needed to make appropriate health decisions. Health literacy is an important aspect for primary and secondary prevention and conceptually different from educational attainment. It was challenging administering this tool as participants were unable to answer appropriately either due to questionnaire fatigue or their immediate recall was poor as they were taking time to answer the questions. Further research is required in this topic which might help in improving the health communication tools we use for raising awareness regarding diabetes and diabetes management.
In our survey, we observed that respondents were availing private and public health-care facility simultaneously for different purposes and 78.3% respondents had a monthly income less than INR 10,000. The monthly expenditure on diabetes was close to 10% of total income, which is an established threshold at which the households are forced to sacrifice other basic needs, sell productive assets, incur debt or be impoverished. In a study conducted by Ramachandran et al. among poor and nonpoor population in the urban and rural areas in seven states of India, the annual total median health expenditure in urban area was INR 10000, while in rural it was INR 6260. This expenditure can be reduced by providing health insurance schemes that include medication and diagnostics or providing medication at affordable price through “Pradhan Mantri Bhartiya Janaushadi Kendras” (The vision of Pradhan Mantri Bhartiya Janaushadi Kendra is to bring down the healthcare budget of every citizen of India through “Quality generic medicines at Affordable Prices”).
Strengths and Limitations of this study
The strength of the study was that it was a community-based survey of a random sample conducted by a single investigator. A small sampling frame might limit the generalizability to other entire urban poor population/area of Delhi. Another limitation is we used only questionnaires with closed-ended responses. Hence, we could not find the in-depth reason why participants were not following a certain practice. An additional qualitative component would have added depth to the study findings. Finally, there were only six participants who were hospitalized, so expenses related to in-patient care are not reported.
Implications of study findings
Our study showed a lack of knowledge in the several aspects of self-care in the diabetes management that can be addressed at individual, family, community, and health system level. The CURES, cohort study with a sample size of 20,000 conducted in Chennai concluded that awareness and knowledge regarding diabetes among general population and diabetics were grossly inadequate. For empowering individuals with diabetes and their family members in self-care for diabetes, education about the illness, access to health-care provider and providing diabetes-related information in an understandable way is crucial. Health professionals have an important role to play in the long-term control of the disease management and prevention of complications. However, this should not be restricted to prescription of medications and diagnostics. Counseling should be part of their patient management strategy. Help of frontline workers can be taken to disseminate the information among diabetics as shown in DISHA study, a cluster randomized trial where Aangawadi workers and ASHA where disseminating information on diet and lifestyle interventions for hypertension risk reduction. Mass media campaigns using TV and internet-based social media have proven to be effective in the certain contexts. National childhood immunization and anti-smoking campaigns are the good examples. This makes a case for a large-scale impactful diabetes education program in the urban and rural settings of India to create the awareness regarding primary and secondary prevention of diabetes and diabetes complications.
Though, Government of India launched the National Program on Prevention and control of Cancer, Diabetes, Cardiovascular diseases and stroke in 2010, the existing Information education and communication and behavior change communication component needs to be effectively implemented and there is need for training and involvement of all the health professional, frontline workers to disseminate information regarding the prevention of diabetes and its complications.
| Conclusion|| |
This study informs about the prevailing gaps in the awareness and practices related to diabetes self-care among the under-privileged. There is scope to close this gap with implementation of awareness programs within the existing health systems.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
| References|| |
Tandon N, Anjana RM, Mohan V, Kaur T, Afshin A, Ong K, et al
. The increasing burden of diabetes and variation among the states of India: The global burden of disease study 1990-2016. Lancet Glob Health 2018;6:e1352-62.
Anjana RM, Deepa M, Pradeepa R, Mahanta J, Narain K, Das HK, et al
. Prevalence of diabetes and prediabetes in 15 states of India: Results from the ICMR-INDIAB population-based cross-sectional study. Lancet Diabetes Endocrinol 2017;5:585-96.
Shrivastava SB, Shrivastava PS, Ramasamy J. Role of self-care in management of diabetes mellitus. J Diabetes Metab Disord 2013;12:14.
Paterson B, Thorne S. Developmental evolution of expertise in diabetes self-management. Clin Nurs Res 2000;9:402-19.
Ahola AJ, Groop PH. Barriers to self-management of diabetes. Diabet Med 2013;30:413-20.
Schillinger D, Grumbach K, Piette J, Wang F, Osmond D, Daher C, et al
. Association of health literacy with diabetes outcomes. JAMA 2002;288:475-82.
Lawton J, Peel E, Parry O, Araoz G, Douglas M. Lay perceptions of type 2 diabetes in Scotland: Bringing health services back in. Soc Sci Med 2005;60:1423-35.
Islam FM, Chakrabarti R, Dirani M, Islam MT, Ormsby G, Wahab M, et al
. Knowledge, attitudes and practice of diabetes in rural Bangladesh: The Bangladesh Population Based Diabetes and Eye Study (BPDES). PLoS One 2014;9:e110368.
Rubin RR, Peyrot M, Siminerio LM. Health care and patient-reported outcomes: Results of the cross-national diabetes attitudes, wishes and needs (DAWN) study. Diabetes Care 2006;29:1249-55.
Kapur A. Economic analysis of diabetes care. Indian J Med Res 2007;125:473-82.
] [Full text]
Kishore J, Kohli C, Gupta N, Kumar N, Sharma P. Awareness, practices and treatment seeking behavior of type 2 diabetes mellitus patients in Delhi. Ann Med Health Sci Res 2015;5:266-73.
] [Full text]
Anjana RM, Pradeepa R, Deepa M, Datta M, Sudha V, Unnikrishnan R, et al
. Prevalence of diabetes and prediabetes (impaired fasting glucose and/or impaired glucose tolerance) in urban and rural India: Phase I results of the Indian Council of Medical Research–INdia DIABetes (ICMR–INDIAB) study. Diabetologia 2011;54:3022-7.
Johri M, Subramanian SV, Sylvestre MP, Dudeja S, Chandra D, Koné GK, et al
. Association between maternal health literacy and child vaccination in India: A cross-sectional study. J Epidemiol Community Health 2015;69:849-57.
Vyas S, Kumaranayake L. Constructing socio-economic status indices: How to use principal components analysis. Health Policy Plan 2006;21:459-68.
Mukhopadhyay P, Paul B, Das D, Sengupta N, Majumdar R. Perception and practices of type 2 diabetics: A cross-sectional study in a tertiary care hospital in Kolkata. Int J Diabetes Dev Ctries 2010;130:143-9.
Mogre V, Abanga ZO, Tzelepis F, Johnson NA, Paul C. Adherence to and factors associated with self-care behaviours in type 2 diabetes patients in Ghana. BMC Endocr Disord 2017;17:20.
Roglic G, World Health Organization, editors. Global report on diabetes. Geneva, Switzerland: World Health Organization; 2016. p. 86.
Solanki JD, Sheth NS, Shah CJ, Mehta HB. Knowledge, attitude, and practice of urban Gujarati type 2 diabetics: Prevalence and impact on disease control. J Educ Health Promot 2017;6:35.
Gopichandran V, Lyndon S, Angel MK, Manayalil BP, Blessy KR, Alex RG, et al
. Diabetes self-care activities: A community-based survey in urban southern India. Natl Med J India 2012;25:14-7.
Noon MJ, Khawaja HA, Ishtiaq O, Khawaja Q, Minhas S, Niazi AK, et al
. Fasting with diabetes: A prospective observational study. BMJ Glob Health 2016;1:e000009.
Al-Arouj M, Assaad-Khalil S, Buse J, Fahdil I, Fahmy M, Hafez S, et al
. Recommendations for management of diabetes during Ramadan: Update 2010. Diabetes Care 2010;33:1895-902.
Koenigsberg MR, Bartlett D, Cramer JS. Facilitating treatment adherence with lifestyle changes in diabetes. Am Fam Physician 2004;69:309-16.
Nielsen-Bohlman L, Institute of Medicine (U. S.), editors. Health literacy: A prescription to end confusion. Washington, D. C: National Academies Press; 2004. p. 345.
van Doorslaer E, O'Donnell O, Rannan-Eliya RP, Somanathan A, Adhikari SR, Garg CC, et al
. Catastrophic payments for health care in Asia. Health Econ 2007;16:1159-84.
Ramachandran A, Ramachandran S, Snehalatha C, Augustine C, Murugesan N, Viswanathan V, et al
. Increasing expenditure on health care incurred by diabetic subjects in a developing country: A study from India. Diabetes Care 2007;30:252-6.
Mohan D, Raj D, Shanthirani C, Datta M, Unwin N, Kapur A, et al
. Awareness and knowledge of diabetes in Chennai-The Chennai Urban Rural Epidemiology Study [CURES-9]. Assoc Physicians India. 2005;53:283-7.
[Figure 1], [Figure 2]
[Table 1], [Table 2], [Table 3]