Introduction

Affordable and high-quality health care is a global agenda with the Alma Ata Declaration of 1978, wherein the World Health Organization (WHO) called for “health for all” by 2000 [1]. This has put a lot of economic and political pressure to generate resources and identify new methods to achieve this task. A recent report published in Lancet [2] by Global burden of disease 2016 healthcare access and quality collaborators revealed the disparity in healthcare access in India, ranging from 64.8 points (59.6–68.8) in Goa to 34.0 points (30.3–38.1) in Assam. Despite substantial gains since 2000, many low-SDI (socio-demographic index) and middle SDI countries still face considerable challenges. Heightened policy action and investments focusing on advancing access to health care and improving the quality of the same across key health services, especially non-communicable diseases, are required.

In India, despite government efforts, there is stagnation in the strengthening of the primary healthcare services. A survey conducted in central state of India, Madhya Pradesh, reported availability of laboratory services, human resources, drugs, equipments and point-of-care supply domains to be 37.1, 49.0, 56.1, 67.9 and 80.9%, respectively, at community health centers (CHCs) and 11.8, 18.2, 44.2, 55.1, and 55.3%, respectively, at primary health centers (PHCs) [3]. Another report from a southern state (Kerala) reported that among the 227 cervical cancer patients 216 (95.2%) of the patients completed the initially planned treatment and among them only 30.4% had regular follow-up, while the rest 69.6% were lost to follow-up [4]. This is the usual scenario across India, where patients visit a tertiary care center in the advanced stage of the disease, take initial treatment and then are unable to come for follow-up. The main reason for this type of behavior is the economic burden of treatment and follow-up and the lack of follow-up clinics close to their place of residence, necessitating every follow-up to be done in a tertiary care center. Treatment for about 40% of hospitalized cancer cases is financed mainly through borrowings, sale of assets and contributions from friends and relatives [5]. Also, over 60% of the households who seek care from the private sector incur out of pocket expenditure over 20% of their annual per capita household expenditure [5].

The main objective of this study was whether we can decrease the economic burden on patients and improve follow-up after primary treatment by using modern communication technology and smartphone-based application in the setting of a LMIC in which the maximum number of patients belong to the rural background and have a low level of education. The secondary objective was to evaluate clinical safety of this type of follow-up.

Materials and methods

This was a prospective study conducted from January 2017 to May 2018, at the Department of Endocrine Surgery, Sanjay Gandhi Postgraduate Institute of Medical Sciences (SGPGIMS), Lucknow, India. A total of 107 patients with endocrine disorder were selected who chose remote follow-up care through social media (WhatsApp).

Study design

All participants treated for surgical endocrine disorders at a specialist endocrine surgery unit of Sanjay Gandhi Postgraduate Institute of Medical Sciences in north India, with access to a smart telephone with Internet access and who consented to use social media for data transmission and consultation, were included.

Follow-up protocol

Patients opting for tele-follow-up were examined remotely, and data were exchanged in the form of medical reports and written follow-up advice. No physical evaluation was possible with this protocol, and wounds were only inspected via video calls. All patients were called back to the hospital for physical examination at the end of 6 months. Laboratory studies and ultrasound for surveillance were done at the laboratory closest to the patient’s home location. Reports were shared during video consultation. After a total thyroidectomy, patients were reviewed every week with reports of serum calcium for adjustment of calcium supplementation and at 6 weeks with serum thyroid-stimulating hormone (TSH) report for levothyroxine dose adjustment. Post-hemithyroidectomy patients were discharged on postoperative day 2 and their wound was inspected via video call after 1 week, and histopathology report and TSH reports were discussed after 6 weeks. If the histopathology report (HPR) was benign, patients visited the hospital only after 6 months. Patients of MEN 2 were similarly followed up with yearly serum calcitonin, serum parathormone (PTH) and 24-h urinary metanephrine and normetanephrine levels. After surgery for pheochromocytoma and discharge, they were required to be in constant touch with daily blood pressure recordings for the need of anti-hypertensives and/or dose adjustments and then were followed up remotely after 2 weeks for wound evaluation. Participants were asked to send the medical reports on one of the senior resident’s mobile phone and follow his advice. In case the patient had specific complaints, an appointment was given to the patient to consult the hospital physically.

We relied on the per capita income of the patient to measure his socioeconomic status instead of using asset, consumption and income due to the simplicity of the method. World Bank definitions were used to classify them into low-, middle- and high-income groups. Per capita income was calculated by two methods. Below poverty line is an economic benchmark used by the government of India to indicate economic disadvantage and to identify individuals and households in need of government assistance and aid. Government of India issues certificates of per capita income to these families which were used for those patients who had these certificates. For the remaining patients, per capita income was calculated by taking the total gross household monthly income divided by the total number of family members living together. Gross household income was calculated by adding incomes of all earning members in the form of salary, wages for labor, rental income and profits from business, and farming or dividends on capital. We relied on the income declared by the patients.

Concern for privacy

General data protection regulation (GDPR) in EU and HITECH act in North America is regulations that require businesses to protect the personal data and privacy of the citizens for transactions. India is planning to bring out “Digital information security in healthcare, act (DISHA)” to protect the privacy of healthcare data. As this study was conducted in India, GDPR/HITECH compliance was not required. But we have devised the following steps to ensure compliance with GDPR, HITECH and DISHA. We informed the patients regarding the processing of the data, data retention periods and the right to withdraw if unhappy with remote follow-up. Patients were also informed that their data can be subjected to analysis and presentation at scientific forums. WhatsApp® was used only after they started end-to-end encryption which ensures only doctor and the person he is communicating with can read what is sent, and no one else in between, not even WhatsApp application administrators. A single smartphone with this application was used which was accessible with only one resident’s fingerprint. All the images received were transferred to a secure hard drive regularly, and data from the smartphone were deleted permanently. All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Outcome measures

Outcomes included clinical safety in the form of missed adverse events due to virtual follow-up, participant’s compliance, satisfaction and economic outcome. Data were collected by the researcher when patients returned to the hospital for their physical follow-up. Patient satisfaction with remote monitoring care was measured by a numeric scale ranging from 1 to 5 (a low score of 1 to a high score of 5).

Statistical analysis

SPSS 17.0 was used for data entry and analyses. Descriptive statistics were used to analyze the demographic and disease characteristics of the patient. Frequencies and percentages were used to calculate patient’s response to specific questions. The mean scores for satisfaction scale between the groups were compared by t test. A value of P < 0.05 was considered statistically significant.

Results

Table 1 depicts the socio-demographic profile of the patients along with the primary endocrine diseases. The majority of patients (43%) belonged to below poverty line group with annual per capita income being less than 996 USD. Only 7.5% of patients had per capita income more than 12,000 USD. 58.9% of app users had education level of graduation and beyond. The median distance of the patient’s residence was 613.20 miles (range 9.32–1553.43).

Table 1 Socio-demographic profile
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We analyzed the clinical safety of smartphone-based follow-up by noting the adverse events missed due to lack of physical examination. No adverse events occurred during the entire follow-up period. Average hospital visits per 06 months were zero for hemithyroidectomy, one for total thyroidectomy, two for parathyroidectomy, and 0.5 for adrenalectomy. Median travel time saved was 34 (30 min–46 h) per patient, and median 78 USD were saved per visit per patient which was calculated based on Indian railways ticket cost for second-class travel (Table 2).

Table 2 Clinical and economic outcome
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Table 3 depicts the compliance and satisfaction analysis. Overall patients were either very satisfied or satisfied. Only one patient reported that he was unsatisfied with this type of follow-up. This patient underwent posterior retroperitoneoscopic adrenalectomy for benign adrenal adenoma and developed limited subcutaneous emphysema which persisted for 1 week. He did not feel comfortable with smartphone-based evaluation and reported to our OPD multiple times although no active intervention was required even after physical examination on any of his physical visits to the OPD.

Table 3 Compliance and satisfaction
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Discussion

This report establishes the clinical safety of smartphone-based applications in the follow-up of surgical endocrine patients. Despite being the third-largest economy in Asia, India has a large number of people in low-income and lower-middle-income groups. Saving of 78 USD per visit per patient may seem very less for the developed world, but most of our patients have monthly income < 83 USD. They spend their one month’s income on a single follow-up visit. An average of 5.4 days of work hours were saved per visit. This figure seems like a lot of time spent on a single physical follow-up for developed countries, but it is quite usual in our country, where 2 days will be spent in journey by train, 2–3 days for consultation, getting the requested investigation done and again showing it to the doctor. Hence, our patients lose an incredibly large amount of time per visit for OPD-based follow-up.

Surgical endocrine disorders are slightly different from other surgical disorders. These patients require long-term (sometimes lifelong) follow-up, as compared to other diseases like cholelithiasis, appendicitis or hernia, where one or two postoperative follow-ups are sufficient. This unique situation makes tele-follow-up a particularly attractive option for endocrine surgery patients.

Hospital-based telemedicine systems have proven to be effective in carrying out the continuity of care after primary treatment is over and are being used in both developed and developing regions of the world [6,7,8,9,10]. Tele-follow-up activity was started at SGPGIMS in the year 2004 via a telemedicine hub at Cuttack, Orissa [11], which is 1500 km away from SGPGIMS. Patients saved USD 20 to 2000 and leave of absence of 4–12 days per follow-up to visit SGPGIMS [11]. Patients from the neighboring districts needed to visit this telemedicine hub for tele-follow-up. This type of tele-follow-up was mostly accepted by the patients from very remote areas, as reported by us earlier [12]. But, we could not overlook the fact that only 34 postoperative patients accepted to follow up via telemedicine hub over a time span of nearly 4 years [12]. The main reason for lower acceptability could be the need to visit the telemedicine hub physically. Another issue is communication links which are lifelines for telemedicine practice. Various terrestrial and satellite media can be used; however, disruption is common which leads to dissatisfaction among patients [13]. All these problems can be overcome by home-based follow-up using a smartphone.

Various studies have now established that telephone-based follow-up is effective in cancer patients as well [14,15,16]. The evidence is growing on remote consultations by social media mostly from developed countries [17, 18]. This is probably the first study from a LMIC evaluating the role of smartphone-based social media application for tele-follow-up. The growing number of smartphone users along with cheaper Internet data rates makes this technology an attractive medium to follow-up patients while ensuring compliance.

Conclusion

Smartphone-based social media applications are a useful tool in providing post-treatment follow-up of surgical endocrine patients in a very cost-effective way, and they are clinically safe even in the absence of physical follow-up in a selected group of patients.