Availability of care for people with diabetes: An exploratory study

INTRODUCTION

An estimated 537 million people worldwide have diabetes. About 12% of the global health expenditure (US$ 966 billion), is directed towards diabetes and its complications. Three in four adults with diabetes live in low and middle-income countries. Diabetes was responsible for 6.7 million deaths in 2021, 1 every 5 seconds. India is among the leading countries with 77 million people suffering from diabetes.¹ In the National Family Health Survey 5 data, random blood sugar level (RBS)–high/very high (>140 mg/ dl) or taking medication to control blood sugar level was reported by 15.6% of the respondents.²

Diabetic retinopathy is a leading preventable cause of blindness.³ Over the course of the illness, about half the individuals develop diabetic neuropathy.⁴ Cost-effective interventions, such as screening for diabetic neuropathy, nephropathy, and retinopathy, are essential but limited in developing countries. Low awareness and diagnosis rate, low access to quality care, low medication adherence, time limitations, suboptimal knowledge of physicians, lack of trained diabetes educators, and disproportionate funding are some of the constraints.⁵ The annual direct and indirect medical costs per patient increases with the number of microvascular and macrovascular complications.⁶

The Ayushman Bharat Health and Wellness Centres across the country are being developed as a focal point for providing universal healthcare to the population. These primary health centres function as screening points and drug depots, and manage complications of diabetes and other non-communicable diseases (NCD) at the community level.⁷ Community health officers are being deployed to ensure the efficient functioning of these centres, which are critical in bridging the gap between the healthcare providers and the community. NCD clinics are being introduced at the block level in community health centres (CHC), under the National Programme for Prevention and Control of Cancer, Diabetes, Cardiovascular Diseases and Stroke (NPCDCS).⁸ Jan Aushadhi Kendras or medical stores are a new venture under the Pradhan Mantri Jan Aushadhi Yojana (PMJAY).⁹ These are government-run pharmacies working with a mission to provide quality drugs available at affordable prices to the most vulnerable and poor, thereby reducing the out-of-pocket expenditure of people. This is beneficial to those who cannot afford a refill of their insulin and medications.

There is a dearth of literature examining the management of diabetes by patients at the community level, especially in India. We conducted this study to explore the understanding of and barriers to prevention and management of diabetes from the patients’ and healthcare workers’ perspectives.

METHODS

A qualitative study was conducted at an urban health centre from March to April 2022 in collaboration with the community medicine department at Pt. B.D. Sharma Post Graduate Institute of Medical Sciences, Rohtak, Haryana, India. This is a public health centre, catering to an estimated population of about 5000 in the urban area of Rohtak. Thirty-four participants were included via purposive sampling. These included 17 people with diabetes and 17 healthcare workers. Twelve interviews are sufficient to reach data saturation if the objectives are fairly limited.¹⁰ Considering feasibility, logistics involved, and the fact that qualitative research is time-consuming, we conducted 17 in-depth interviews with people with diabetes and healthcare workers. Using maximum variation sampling, we recruited 19 men and 15 women.

From the survey register of the health centre, known people with diabetes were enlisted. They were called to the centre for an in-depth assessment. Those willing to participate were recruited. If a patient refused to participate/ did not come, the next patient was called. Six interview sessions were conducted with 3 patients each on a day; the last session comprised 2 patients only. People with any duration of diagnosis with diabetes could be included in the study. Both, type 1 and type 2 diabetes mellitus (DM) patients could participate. All healthcare workers working in the urban field practice area of the community medicine department were enlisted. Medical practitioners working in the area and major referral centres were contacted via telephone. They were interviewed at the site of their practice.

Participants not consenting, severely ill/hospitalized, or having a psychiatric illness were excluded.

The study design was descriptive phenomenology (qualitative research). In-depth interviews were conducted in a semi-structured format after taking written informed consent. These lasted for >20 minutes each. Participants were made familiar with the surroundings and encouraged to We read the transcripts multiple times to familiarize ourselves with the data. This process yielded initial codes for the whole dataset. These were further grouped into meaningful themes.¹¹ Two separate researchers (AS and JS) reviewed the same for rigour in thematic analysis. To increase the validity, researcher triangulation, peer debriefing, and member checking were performed.¹² Finally, a report was made.

Participants were encouraged to detail their experiences with diabetes, the diagnosis, treatment so far, and management. Healthcare workers were asked to explain their experiences of dealing with people with diabetes. In-depth discussions on individual life ordeals with respect to diabetes were conducted with each participant (Fig. 1). At times, they were promoted to explore their feelings about having to deal with the condition. Participants were given time to speak of their lived experiences and listened to patiently. Occasionally, prompts for steering the interview in the intended direction were used.

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Fig 1.

Mind map for the in-depth interviews

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The study was conducted in accordance with the Helsinki Declaration of Ethics. Institutional review board approval was obtained. Informed written consent was obtained from all patients prior to enrolment in the study, and confidentiality was assured.

RESULTS

A total of 34 participants, 19 men and 15 women, were included. The mean (SD) age of the participants was 45 (2.1) years. Most participants were graduates (70%) and in private jobs (63%). They belonged to the middle class. Three patients with type 1 DM and 14 with type 2 DM participated. The mean (SD) duration since diagnosis with diabetes was 19 (3) years. Fasting blood sugar (FBS) was taken as the measure for diagnosis (FBS >126 mg/dl). The mean years of experience of the healthcare workers was 23 (2.1) years. The designation of the healthcare workers was diverse, including auxiliary nurse midwives (3), resident doctors (6), medical officers (3), and professors (3).

The in-depth interviews revealed three predominant themes for the patients and healthcare workers (Table 1). The patient interviews explain life with diabetes clearly. The themes generated for healthcare workers considered their vivid experiences as providers of care to the community.

DISCUSSION

Our study highlighted the perspectives of various people with diabetes and healthcare providers. Diabetes affects not only one’s physical well-being but mental and emotional makeup as well. Our study revealed that the disease can cause vast emotional upheavals and its various implications in patients’ lives. The psychosocial impact of diabetes featured in the study by Kalra et al.¹³ The helplessness of the patients, the daily struggles, and the lack of social support were also studied. Berry et al.¹⁴ highlighted the need for healthcare providers to display an understanding of diabetes distress and to actively engage in discussion with individuals struggling to cope with diabetes.

Another aspect to note was the variable nature of diagnosis and its understanding among patients. Everyone had their own story of diagnosis and their impression of the same. Some participants had a clear understanding, whereas many portrayed a lack of knowledge about the prognosis or pathogenesis of the disease. Inoue et al.¹⁵ bring out the key concept of communicative and critical health literacy in patients’ understanding and efficacy in self-management of diabetes.

The monetary impact of diabetes was a cause of concern for many. The insulin pen injections, the frequent change of insulin cartridges, and the expensive drugs for treatment were causing trouble to some participants. The economic burden of diabetes has been highlighted in a review conducted by Oberoi and Kansra,¹⁶ where they emphasized how diabetes poses a financial crunch for many households in India. Multiple patients reported switching or supporting their routine care with alternate therapies due to frustration or hopelessness. Belief in allopathy was shaken at times.¹⁷ A push towards alternate and complementary medicine is being given under the Ayushman Bharat Mission to alleviate patients’ suffering by mainstreaming Ayurveda, Homeopathy, Unani, Siddha, and Yoga practices.

Access to high-quality treatment modalities such as insulin is valuable. Insulin availability in outlets is poor, and treatment is unaffordable for those on low wages, having to pay out-of-pocket. Biosimilar insulins are most often (but not always) more economical than originator brands. Ewen et al. reported that analogue insulins have much higher prices than the estimated costs of production, including profit.¹⁸ This issue is being tackled at the mass level by national health programmes such as PMJAY.⁹ Generic medicines, insulin cartridges, and oral hypoglycaemic agents of good quality are being provided at costs affordable to the community. Access to skilled physicians and healthcare providers is a cause of concern too. It came up in this study with doctors highlighting very few specialised staff at the CHC. This was noted in a pan-India study conducted by Wangnoo et al.¹⁹ The NCD clinics, a new concept in the secondary care facilities, are being implemented under the latest Indian Public Health Standards Guidelines (IPHS) released in 2022.²⁰

We noted decreased physical activity, urbanization with mechanization, and a high prevalence of undiagnosed diabetes. This became apparent in a review published by Unnikrishnan et al.²¹ WHO’s ACTIVE campaign is working towards increasing physical activity in countries.²² Many inexpensive, ingenious methods have been tried with encouraging outcomes, including training and deployment of non-medical allied health professionals and the use of mobile phones and telemedicine to deliver key health messages for the prevention and management of type 2 DM. Misra et al.²³ highlighted this concept in their study.

The Ayushman Bharat Digital Mission is revolutionising digital health at the national level in India.²⁴ The impact of this transformation will be visible in years to come.