|Year : 2021 | Volume
| Issue : 3 | Page : 129-136
The impact of project diabetes with dignity intervention on knowledge and quality of life among adults with diabetes in a rural Indian setting
Gaurang P Nazar1, Monika Arora1, Vinay Kumar Gupta2, Tina Rawal1, Aastha Chugh3, Surbhi Shrivastava3, Prasanna Dhore4, Anjali Bhatt4, Shailesh R Deshpande4, AG Unnikrishnan4
1 Health Promotion Division, Public Health Foundation of India, Haryana; HRIDAY, New Delhi, 3Chellaram Diabetes Institute, Pune, Maharashtra, India
2 Health Promotion Division, Public Health Foundation of India, Haryana, India
3 HRIDAY, New Delhi, India
4 Chellaram Diabetes Institute, Pune, Maharashtra, India
|Date of Submission||01-Jun-2021|
|Date of Acceptance||17-Sep-2021|
|Date of Web Publication||22-Nov-2021|
Dr. Gaurang P Nazar
B5/94 (1st Floor) Safdurjung Enclave, New Delhi - 110 029
Source of Support: None, Conflict of Interest: None
Objective: Inadequate knowledge about diabetes leads to its under-diagnosis and sub-optimal control. We studied the impact of project diabetes with dignity (DWD) intervention on knowledge and quality of life (QoL) among adults with diabetes in a rural Indian setting.
Methods: DWD was a community-based, quasi-experimental trial conducted with 416 participants (30–70 years) with diabetes across two Primary Health Centers (one intervention; one control) in Western India, over a year. The intervention involved monthly home visits, patient/caregiver, and community-based awareness-raising activities by trained accredited social health activists (ASHAs) workers. Differences in changes in knowledge about: Diabetes, symptoms, management, and complications, and QoL between participants in the intervention versus control areas, from baseline to end-line, were assessed using a questionnaire and analyzed via mixed-effects regression models.
Results: About 52% of patients belonged to the intervention group. There was a significant increase in knowledge about diagnosis/management among participants in intervention group (31.48% [95% confidence interval (CI) 24.52–38.43] to 59.55% [52.52–66.58]) versus a decline in the control group (40.73% [33.40–48.07] to 27.95% [19.40–34.50]) (P < 0.001). Similar improvements in intervention group were observed for knowledge about symptoms/complications of diabetes. For QoL, percentage of patients having some self-care problems showed a higher decline in intervention group (29.46% to 6.98%) versus control group (4.85% to 3.55%) (P = 0.005). Reduction in anxiety/depression was significant in the intervention versus control group (P < 0.001).
Conclusion: DWD was effective in improving QoL and diabetes knowledge which are key to prevent disease progression/complications in the intervention compared to the control group. Capacity-building of community health workers such as ASHAs, for the prevention and management of diabetes in rural settings, is recommended.
Keywords: Diabetes, India, intervention, knowledge, quality of life
|How to cite this article:|
Nazar GP, Arora M, Gupta VK, Rawal T, Chugh A, Shrivastava S, Dhore P, Bhatt A, Deshpande SR, Unnikrishnan A G. The impact of project diabetes with dignity intervention on knowledge and quality of life among adults with diabetes in a rural Indian setting. Int J Non-Commun Dis 2021;6:129-36
|How to cite this URL:|
Nazar GP, Arora M, Gupta VK, Rawal T, Chugh A, Shrivastava S, Dhore P, Bhatt A, Deshpande SR, Unnikrishnan A G. The impact of project diabetes with dignity intervention on knowledge and quality of life among adults with diabetes in a rural Indian setting. Int J Non-Commun Dis [serial online] 2021 [cited 2021 Dec 7];6:129-36. Available from: https://www.ijncd.org/text.asp?2021/6/3/129/330909
| Introduction|| |
Low- and middle-income countries entail a greater risk of mortality and morbidity from noncommunicable diseases (NCDs) compared to high-income countries. India is one of the epicenters of the global diabetes pandemic. India is home to nearly 77 million people with diabetes, only preceded by China. This number is expected to rise to 134.2 million by 2045, unless urgent preventive measures are implemented at every level, from policy to society to the individual.
Diabetes mellitus or Type 2 diabetes (referred to as diabetes hereafter) is the most prevalent type of diabetes and in India. Despite the high burden, awareness about diabetes in India is low. The lack of knowledge about the disease and its prevention is critical as it can impede patients' ability to manage their condition. In primary care settings, the major reasons for suboptimal diabetes care include poor patient knowledge of diabetes and lower medication adherence. A recently conducted cross-sectional study with 200 patients with diabetes in Michigan, USA showed that those with inadequate health literacy had higher chances of getting hospitalized and suffering from disease complications.
India is experiencing a shift in diabetes prevalence from urban to rural areas, the affluent to the less privileged, and older to younger people. Urban populations have higher reported cases and diagnoses of diabetes because they also have better awareness and access to healthcare. With the majority of the country's population residing in rural settings, the potential burden of diabetes is compounded by poor access to quality care, diabetes-related complications, and rising healthcare costs., People residing in rural areas have lower literacy rates and lack of awareness about NCDs, which critically affect diabetes care.,
Therefore, the project diabetes with dignity (DWD) aimed to test the feasibility and efficacy of a model of enhanced diabetes care through the empowerment of accredited social health activists (ASHAs; community health workers [CHWs]), in a rural Indian community of Pune district, Maharashtra (India).
| Methods|| |
Approval for the study was obtained from the regulatory authority in the state to implement the project activities. Ethics approval for the study was obtained from the Institutional Ethics Committees at Chellaram Diabetes Institute (CDI) (CDIIEC/2016/051) and the Public Health Foundation of India (PHFI) (TRC-IEC-286/16).
This study was a pilot, community-based, quasi-experimental trial implemented over a year for enhanced care of diabetes. The study was conducted in two Primary Health Centre (PHC) areas of Baramati block in Pune district. The study was implemented in five villages each, under each PHC. The selection of villages was based on the availability of full PHC health staff, location of villages (non-adjacent), and availability of minimum population for recruiting the required sample.
A house-to-house survey was conducted by trained ASHAs in both, intervention and control areas, to identify all the participants who were at risk of diabetes, and screening was done using a validated Indian Diabetes Risk Score (IDRS) questionnaire. ASHAs referred the at-risk participants and known cases of diabetes to sub-centers for further evaluation. These participants underwent random blood glucose (RBG) testing at sub-centers. Those with RBG ≥200 mg/dl were invited to take part in the study. Baseline evaluation was conducted with 431 participants with diabetes. A total of 416 participants were followed up 6 months after the baseline during postintervention evaluation (follow-up rate of 96.5%).
Those with severe systemic illness, advanced diabetes complications, mental instability, and those unwilling to participate were excluded.
Diabetes with dignity intervention
The study involved an assessment of knowledge about diabetes and indicators of quality of life (QoL) through interviewer-administered surveys. The baseline evaluations were followed by a 6-month community-based and ASHA-led DWD intervention in the intervention area. The intervention involved monthly home visits, patient/caregiver, and community-based awareness-raising. The community-based institutions such as the Village, Health, Sanitation, and Nutrition Committee, Diabetes Self-help Groups, and community leaders such as village Sarpanch (head of the Panchayat and the Gram Sabha) were also involved in awareness-raising activities. The 6-month intervention was followed by a postintervention evaluation. No intervention except educational leaflets was given to participants in the control area.
Training of accredited social health activists and other community health workers
ASHAs in both, intervention and control areas received a 2-day training for conducting the screening of subjects at-risk of diabetes, from CDI with support from the PHC Medical Officer (MO). Only in the intervention area, ASHAs were imparted training to build their capacity to support self-care of subjects with Diabetes, based on five systematic modules developed in the local language (Marathi). These modules focused on various aspects of diabetes management, including general overview of diabetes, identifying early symptoms, managing complications, pharmacological and nonpharmacological management, and the importance of communication (both interpersonal and group) in diabetes management. ASHA facilitator, auxiliary nurse midwife (ANM), and multipurpose workers (MPW) were also invited to the training, and to support ASHAs in day-to-day implementation of the intervention.
Implementation of diabetes with dignity intervention by the accredited social health activists
Each participant with diabetes included in this study from the intervention area received a monthly visit by trained ASHA over 6 months. Each ASHA sent a monthly report of activities to CDI. A telephone helpline was created and managed by CDI to be accessed by ASHAs for any technical queries related to implementation. All the participants were referred for treatment to PHC MO or a private practitioner depending on their preference.
Trained interviewers administered the questionnaire to elicit responses from the study participants, wherein adapted questions from the validated project UDAY questionnaire were included. Subsequently, the Delphi method was used to obtain inputs from a Scientific Advisory Committee formed at the inception of the project DWD. The questionnaire was pretested with three participants with diabetes in a different rural area of the Pune district to obtain feedback (length and content of questionnaire, comprehension, cultural acceptability, and relevance). Based on the findings of the pretesting, the questionnaire was revised and finalized. The questionnaire focused on the assessment of knowledge about diabetes, diabetes management, and QoL of diabetic participants using the EuroQoL EQ-5D-3 L tool.
The primary outcomes for this study were participants' reported knowledge about diabetes and the reported QoL.
Three items (causes of diabetes; inheritance in the family; facts/myths about diabetes) assessed knowledge about diabetes in general, two items (symptoms; having diabetes without experiencing symptoms) assessed knowledge about symptoms of diabetes. Four items (methods of diagnosing; the importance of regular blood sugar tests; best measure for managing diabetes in long term; and complications) assessed knowledge about diagnosis and management of diabetes, while, seven items (managing low blood sugar levels; reduce risk of complications, etc.,) assessed knowledge about complications of diabetes. For each question, we estimated the percentage of participants responding correctly. Subsequently, four new categorical knowledge indicators (general, symptoms, diagnosis/management, complications) were created, each indicating the cumulative percentage of participants responding correctly to all questions for that particular indicator.
Five self-reported indicators (5D) including mobility, self-care, ability to perform usual activities, experiencing pain/discomfort, and experiencing anxiety/depression were used to assess the QoL of the participants. For each indicator, the participants chose one of the three broad responses (3 L): Experienced no problems, experienced some problems, and experienced extreme problems. For each of these five indicators, the percentage of participants choosing each response option was estimated.
For evaluating the impact of DWD on each of the four knowledge indicators, we used mixed-effects regression models specifying the knowledge indicator as the dependent variable and the study group (intervention/control), time (t0 = baseline/t1 = postintervention) and the interaction term (study group X time) as the independent variables. In doing so, we adjusted for covariates: Age group, gender, socioeconomic status (SES), being a known case of diabetes, duration of diabetes, being on diabetes medication, being on a prescribed diet, exercising, tobacco use, and alcohol consumption. For each indicator, the regression analysis indicated the difference in change of proportions from baseline to end-line between intervention and control groups. A true difference was considered at the significance level of 5%.
For evaluating the impact of project DWD on each of the five QoL indicators, we first used the Wilcoxon signed -rank test to study the difference in response proportions between baseline and postintervention in each of the intervention and control groups. In the next step, we used the ordered logistic regression to test the difference in the shift in responses from baseline and postintervention between intervention and control groups.
| Results|| |
[Table 1] describes the participant characteristics. Out of 416 participants followed postintervention, 200 (48%) participants belonged to the control group, while 216 (52%) belonged to the intervention group. Twenty-two participants (5.3%) were in the 31–40 years' age group, whereas most, 75% of the participants belonged to 51–70 years' age group. Out of 416 participants, 225 (54.1%) were male, 300 (72.1%) belonged to the low SES group, 109 (26.2%) belonged to the middle SES group while seven (1.7%) participants belonged to the high SES group.
|Table 1: Demographic characteristics of project diabetes with dignity participants|
Click here to view
At baseline, 222 (51.6%) participants reported tobacco use, while 212 (51%) reported tobacco use postintervention; at baseline, 28 (6.5%) participants reported being alcohol users, while postintervention 17 (4.1%) participants reported using alcohol. At baseline, 358 (83%) participants enrolled in the study were known cases of diabetes (others were newly diagnosed in this study). At baseline, 56% of participants were on medication for diabetes and this changed to 56.5% postintervention. At baseline, 34.6% of participants were prescribed diet for diabetes by a medical practitioner, while postintervention, 38.9% of participants reported prescription of diet for diabetes. From baseline to postintervention, those reporting moderate to vigorous-intensity physical activity more than 30 min per day for at least 5 days a week decreased from 41.8% to 39.7%.
Table 2] shows the impact of project DWD on knowledge about diabetes in general, knowledge about symptoms of diabetes, knowledge about diagnosis and management of diabetes, and knowledge about complications of diabetes among participants. There was an increase in participants' knowledge for all of the knowledge-related indicators in the intervention group from baseline to postintervention. The percentage of participants in the intervention group who were knowledgeable about symptoms of Diabetes increased from 58.24% (95% confidence interval [CI] 51.79–64.68) at baseline to 95.27% (95% CI 88.76–100.0) postintervention (a 37.03% relative increase) compared with a decline in control group from 43.76% (95% CI 36.96–50.56) to 34.53% (95% CI 27.53–41.52) (a 21.09% relative decline) (P < 0.001). The percentage of participants in the intervention group who were knowledgeable about diagnosis and management of diabetes increased from 31.48% (95% CI 24.52–38.43) at baseline to 59.55% (95% CI 52.52–66.58) postintervention (a 89.17% relative increase) compared with a decline in the control group from 40.73% (95% CI 33.40–48.07) to 27.95% (95% CI 19.40–34.50) (a 31.38% relative decline) (P < 0.001). The percentage of participants in the intervention group who were knowledgeable about complications of diabetes increased from 63.98% (95% CI 57.70–70.26) at baseline to 95.50% (95% CI 89.16–100.0) postintervention (a 49.27% relative increase) compared with a decline in the control group from 48.01% (95% CI 41.38–54.64) to 37.48% (95% CI 30.67–44.30) (a 21.93% relative decline) (P < 0.001).
|Table 2: Impact of project diabetes with dignity intervention on knowledge related to diabetes|
Click here to view
Quality of life outcomes
[Table 3] shows the impact of project DWD on five QoL indicators. For self-care, the shift in responses between intervention and control groups from baseline to postintervention after adjusting for covariates were statistically significant (P = 0.005). For this indicator, the percentage of participants having some problems in washing or dressing showed a higher decline in the intervention group (29.46% to 6.98%) compared with the control group (4.85% to 3.55%). Moreover, there was a higher increase in the percentage of participants having no problems with self-care in the intervention group (70.54% to 93.02%) compared with the control group (95.15% to 95.43%). For anxiety/depression, the shift in responses between intervention and control groups from baseline to postintervention was statistically significant (P < 0.001). There was a higher decline in the percentage of participants who were moderately anxious or depressed in the intervention group (56.7% to 14.42%) compared with the control group (8.25% to 6.03%). There was also a higher increase in the percentage of participants who were not anxious or depressed in the intervention group (43.3% to 84.65%) compared with the control group (91.26% to 93.47%). We did not observe any statistically significant differences between intervention and control groups from baseline to postintervention for mobility, performing usual activities, and experiencing pain/discomfort (P > 0.05 for all indicators in fully adjusted models).
|Table 3: Effect of project diabetes with dignity intervention on quality-of-life indicators|
Click here to view
| Discussion|| |
This study reported significant improvements in knowledge about diabetes symptoms, management, and complications in the intervention group compared with the control group. Our findings are consistent with improvements in knowledge about diabetes reported in earlier studies on CHW interventions among participants with diabetes., A previous study conducted in the US with 885 patients with Type 2 diabetes, also estimated a significant increase in perceived competence in managing diabetes among the patients over 12 months from a score of 22.41 to 24.11 (P < 0.0001) as a result of a CHW-led intervention. Internationally, the role of CHWs has been recognized as vital in raising awareness about diabetes management and has proven to be successful in enhancing self-care among patients with diabetes. Consistently, our findings emphasize the significant role of CHWs (ASHA in our case) in enhancing knowledge and awareness about diabetes management and control.
Very few studies to date have assessed improvement in the QoL indicators in participants with diabetes through interventions involving CHWs., However, diabetes continues to affect major components of QoL including physical components especially with coexisting related complications like obesity and mental health issues such as depression. Our findings highlight that DWD intervention was efficacious in bringing about positive changes in two out of five QoL indicators, self-care, and anxiety/depression. Our findings are contrary to a randomized controlled trial (RCT) of CHW intervention in the US among disadvantaged patients with diabetes which showed that the intervention was not effective in bringing about any significant changes in health-related QoL. Nonetheless, as diabetes is a chronic and incurable disease, it is important that the intervention should be able to lead to improved QoL lived with the condition along with positive behavioral changes and improved glycaemic control.
A systematic review of the influence of health systems on Type 2 Diabetes found limited evidence of studies assessing awareness as an outcome. Most awareness studies found in the initial search were focused on relationships between demographic and social factors (e.g. sex, age, educational level, income) with awareness, and not relationships between systems-level factors and awareness. The review did find that the use of education programs led by healthcare professionals is one of the health systems factors that acts as a facilitator for effective Type 2 diabetes mellitus care and management. However, DWD intervention, which also involved knowledge and awareness enhancement by CHWs, was effective in improving these indicators among patients with diabetes in rural India. Earlier studies indicated that knowledge and awareness about diabetes in India, particularly in rural areas, is poor. Therefore, such an intervention would be effective in improving knowledge about diabetes, which may lower the increasing prevalence of diabetes and its related complications.
In our study, some operational issues were reported by ASHAs who are engaged in multiple activities for various vertical national programs. Some found it difficult to commit sufficient time dedicated to DWD activities, despite being offered a suitable incentive. Some ASHAs at the beginning of the project reported issues in communicating with community members and issues with operationalizing the high-risk assessment tool (IDRS). Research in India has shown that the existing CHWs including ASHA are overburdened with an increasing number of national health programs. Suitable incentives with the recruitment of ASHAs dedicated to NCD prevention and control under the National Program for prevention and control of cancer, diabetes, cardiovascular disease and Stroke (NPCDCS) may help overcome some of these barriers.
Strength and limitations
The DWD intervention involved extensive training and capacity building of ASHAs, supported by ANM, MPW, and MOs for the management and prevention of diabetes. Ministry of Health and Family Welfare, Government of India has introduced this model with a focus on building the knowledge and skills of the ASHA in the prevention and health promotion under the National Health Mission, but it has not been tested. This study piloted the proposed model and thus provides initial evidence of the efficacy of that model. We used the validated EuroQoL tool for the assessment of QoL, used by several other studies across the world., However, the study faced some operational challenges including a lack of suitable questionnaires for assessing knowledge about diabetes in detail. We had to adapt and pre-test the questionnaire which was used in one of the earlier projects.
| Conclusion|| |
Findings of this study suggest that the project DWD intervention model, involving the capacity building of ASHAs, supported by ANMs, MPWs, and MOs, for screening of subjects at risk of diabetes in the community, referrals of high-risk subjects to SCs/PHCs for further evaluation, and community-based awareness-raising/health promotion activities for prevention and management of diabetes in rural Indian settings, could be feasible and efficacious. As guidelines for ASHA engagement under the NPCDCS have only recently been developed and are consistent with the project DWD intervention model, large-scale evaluation of this model through a community-based RCT across different states of India is recommended. Fresh enrolment and capacity building of ASHAs with the provision of commensurate incentives for community-based health promotion activities around prevention, screening, and management of diabetes in rural settings of India is recommended.
This work has been approved by the Institutional Ethics Committees at CDI as well as PHFI.
Financial support and sponsorship
This work was supported by Sanofi India Ltd. as part of its public health initiatives for the prevention and management of Diabetes.
Conflicts of interest
There are no conflicts of interest.
| References|| |
NCD Countdown 2030 collaborators. NCD Countdown 2030: Worldwide trends in non-communicable disease mortality and progress towards Sustainable Development Goal target 3.4. Lancet 2018;392:1072-88.
Unnikrishnan R, Anjana RM, Mohan V. Diabetes mellitus and its complications in India. Nat Rev Endocrinol 2016;12:357-70.
Pradeepa R, Mohan V. Prevalence of type 2 diabetes and its complications in India and economic costs to the nation. Eur J Clin Nutr 2017;71:816-24.
Basu S, Sharma N. Diabetes self-care in primary health facilities in India – Challenges and the way forward. World J Diabetes 2019;10:341-9.
Anbarasan S, Gurtoo A, Srinivaasan M, Ap MK. Level of health literacy among type 2 diabetic persons and its relation to glycemic control. J Assoc Physicians India 2019;67:59-62.
Lall D, Engel N, Devadasan N, Horstman K, Criel B. Challenges in primary care for diabetes and hypertension: An observational study of the Kolar district in rural India. BMC Health Serv Res 2019;19:44.
Bansode B, Jungari DS. Economic burden of diabetic patients in India: A review. Diabetes Metab Syndr 2019;13:2469-72.
Venkatesan M, Dongre AR, Ganapathy K. A community-based study on diabetes medication nonadherence and its risk factors in rural Tamil Nadu. Indian J Community Med 2018;43:72-6.
] [Full text]
Prenissl J, Jaacks LM, Mohan V, Manne-Goehler J, Davies JI, Awasthi A, et al.
Variation in health system performance for managing diabetes among states in India: A cross-sectional study of individuals aged 15 to 49 years. BMC Med 2019;17:92.
Mohan V, Deepa R, Deepa M, Somannavar S, Datta M. A simplified Indian diabetes risk score for screening for undiagnosed diabetic subjects. J Assoc Physicians India 2005;53:759-63.
Mohan S, Jarhyan P, Ghosh S, Venkateshmurthy NS, Gupta R, Rana R, et al.
UDAY: A comprehensive diabetes and hypertension prevention and management program in India. BMJ Open 2018;8:e015919.
Helmer O. Analysis of the Future: The Delphi Method. California: The RAND Corporation; 1967.
Balagopal P, Kamalamma N, Patel TG, Misra R. A community-based participatory diabetes prevention and management intervention in rural India using community health workers. Diabetes Educ 2012;38:822-34.
Trump LJ, Mendenhall TJ. Community health workers in diabetes care: A systematic review of randomized controlled trials. Fam Syst Health 2017;35:320-40.
Kane EP, Collinsworth AW, Schmidt KL, Brown RM, Snead CA, Barnes SA, et al.
Improving diabetes care and outcomes with community health workers. Fam Pract 2016;33:523-8.
Unwin N, Gan D, Whiting D. The IDF diabetes atlas: Providing evidence, raising awareness and promoting action. Diabetes Res Clin Pract 2010;87:2-3.
Alaofe H, Asaolu I, Ehiri J, Moretz H, Asuzu C, Balogun M, et al.
Community health workers in diabetes prevention and management in developing countrie. Ann Glob Heal 2017;83:661-75.
Nelson K, Taylor L, Silverman J, Kiefer M, Hebert P, Lessler D, et al.
Randomized controlled trial of a community health worker self-management support intervention among low-income adults with diabetes, Seattle, Washington, 2010-2014. Prev Chronic Dis 2017;14:E15.
Trikkalinou A, Papazafiropoulou AK, Melidonis A. Type 2 diabetes and quality of life. World J Diabetes 2017;8:120-9.
Ong SE, Koh JJ, Toh SE, Chia KS, Balabanova D, McKee M, et al.
Assessing the influence of health systems on Type 2 Diabetes Mellitus awareness, treatment, adherence, and control: A systematic review. PLoS One 2018;13:1-42.
Deepa M, Bhansali A, Anjana RM, Pradeepa R, Joshi SR, Joshi PP, et al.
Knowledge and awareness of diabetes in urban and rural India: The Indian council of medical research India diabetes study (Phase I): Indian council of medical research India diabetes 4. Indian J Endocrinol Metab 2014;18:379-85.
Gopalan SS, Mohanty S, Das A. Assessing community health workers' performance motivation: A mixed-methods approach on India's Accredited Social Health Activists (ASHA) programme. BMJ Open 2012;2:e001557.
Brauer CA, Rosen AB, Greenberg D, Neumann PJ. Trends in the measurement of health utilities in published cost-utility analyses. Value Health 2006;9:213-8.
Hayes A, Arima H, Woodward M, Chalmers J, Poulter N, Hamet P, et al.
Changes in quality of life associated with complications of diabetes: Results from the ADVANCE study. Value Health 2016;19:36-41.
[Table 1], [Table 2], [Table 3]