Background

Conventionally, follow up (FU) information is obtained at the time of hospital visit by the patients. It is often said and written that complete FU is not possible in India and various reasons are given for this e.g. patients coming from far off areas, low socio-economic and educational status of patients, inadequate transport and communication facilities, high costs of travel, etc. Advances in information and communication technology have virtually eliminated distances and shrunk the whole world – these innovations need to be exploited by the medical community for obtaining FU information about the patients. We present our experiences with FU of our operated patients and propose new methods for better FU.

Methods
Records

In the founding year (1989) of the department, areas and procedures of interest e.g. gall bladder cancer (GBC), hepatico-jejunostomy (HJ) for post-cholecystectomy benign biliary strictures (BBS), pancreatico-duodenectomy (PD) for peri-ampullary and pancreatic cancers, etc. were identified. These areas were assigned to senior residents (SR) for collection of data and to faculty members for supervision. Initially, manual structured proformas were designed and used. Later the data was transferred to a computerised database and the institute now has all hospital records on a computerised hospital information system (HIS). Data are analysed and presented in department meetings by the SRs at least once every year.

Each and every patient admitted in the department is assigned a unique departmental number, termed as surgical gastroenterology (SGE) number. This is in addition to the hospital central registration (CR) number. The patient’s contact address is once again recorded by the department staff as the address recorded by the hospital registration staff is often incomplete and incorrect. Of late, their contact phone numbers (both landline and mobile) are also being recorded. A proforma for contact details has been designed which records home and work address, phone numbers and bank details of the patient, spouse, parents, children, any relative/ friend in Lucknow, any relative/ friend in government service, any hospital employee known or related to the patient.

FU cards

At the time of discharge from the hospital, instructions are given to the patient and/or the relatives regarding FU, and the need and importance of FU is explained to them. For every patient who is discharged, a pre-printed FU card with SGE number and other relevant details of the patient is completed. All FU cards are kept in the out-patient department (OPD). At every FU visit of the patient, the contact address and phone number of the patient are rechecked and corrected by the departmental staff, and relevant and important medical information is recorded on the FU card by the doctor attending the patient. FU cards have been colour coded for diseases/ procedures e.g. GBC - green, HJ for BBS – yellow, PD - blue, etc. for ease of sorting and retrieval. A structured proforma is being designed for disease/ procedure specific FU cards to ensure that all relevant information is collected and recorded at each FU visit.

Hospital visit FU

Information about hospital visits and investigations undertaken in the hospital is obtained from the FU cards kept in the OPD and the computerised HIS. FU data is also collected form related departments e.g. Medical Gastroenterology, Radiotherapy, Nuclear Medicine, etc. where the patient may have come for FU visit/ consultation/ investigation. Information about patient is also obtained from any hospital employee related to the patient. Procedure-specific (e.g. HJ for BBS) special FU OPDs have been held. Several patients who had not come for FU for many years turned up, thus improving the FU. Similar special OPDs are planned for other procedures (e.g. PD) and diseases (e.g. GBC).

Postal FU

Patients who have not come for FU for the last 6 months are sent a postal questionnaire with a pre-paid envelope for reply. For patients, whose questionnaires are returned undelivered, alternate addresses are retrieved from the consent form. These addresses are more likely to be correct and complete as they are recorded by the patient/ relative rather than those recorded by the hospital staff which are often wrong and incomplete.

Telephonic FU

Recently, patients have been followed up telephonically also. Department staff has been provided with mobile phones. These phone numbers are provided to patients, who can contact them to take an appointment and check the availability of a particular SR. Data-specific mobile phones e.g. GBC, HJ for BBS, PD, etc. have been provided to the SRs who manage respective databases. These phone numbers are provided to the respective patients at the time of discharge to help them contact the SR who is looking after the respective database. Patients are instructed to call the SR between 7 and 8 pm only when the SRs are relatively free. These data-specific mobile phones are passed on from one generation of SRs to the next. The SRs may thus change, but the data-specific mobile phone number (provided to the patients) remains the same.

Results

The follow up data of patients with BBS who underwent HJ is detailed here as an example.

A total of 424 patients were operated for HJ between 1989 and 2007 (eligible for at least 24 months follow up). Five died in the post-operative period. 409 were available for follow up (FU) (mean + SD: 48 + 50 months; median: 26 months). 225 patients had FU > 24 months (mean + SD: 77 + 44 months; median: 65 months, range: 24-224 months). 86 patients had recent FU (in last 2 years).

A total of 326 patients underwent HJ for BBS between 1989 and 2004 (eligible for at least 5 years follow up). 9 died in the post-operative period or during follow up. 307 were available for follow up (FU) (mean + SD: 58 + 53 months; median: 44 months). 198 patients had FU > 24 months. 134 patients had FU > 5 years. 63 patients had recent FU (in last 2 years). A total of 178 patients underwent HJ for BBS between 1989 and 1999 (eligible for at least 10 years follow up). 8 died in the post-operative period or in follow up. 161 were available for follow up (FU) (mean + SD: 78 + 60 months, median: 75 months). 122 patients had FU > 24 months. 96 patients had FU > 5 years. 27 patients had recent FU (in last 2 years).

Future plans

We plan to join hands with Reliance Mobile which has 240 internet kiosks called Reliance Web World (RWW) all over the country (including 20 in the state of UP) and plan to initiate video-conferencing (VC) based FU. Our institute has a stateof- the-art Telemedicine Centre which can be connected to any RWW for VC. A pilot run has been done and was successful. Patients will be instructed to contact their nearest RWW which in turn will contact our telemedicine staff for a VC based FU. The Department of Information Technology (DIT), Government of India has established about 100,000 nodes with internet facilities – Common Service Centres (CSCs) - in rural and semi-urban areas. These CSCs can also be used for webbased FU.

A media blitzkrieg is planned where appeal will be made to patients, their relatives, friends and doctors through audio (radio – Akashvani, FM channels), video (Doordarshan, private channels, cable TV, theatres) and print (newspapers, magazines) media to come back for FU or write, call, SMS or email to us at least once in a year.

A maha OPD is planned on a Sunday when more than 20,000 patients who have been admitted/ operated in the department since 1989 will be invited to come for a FU visit.

A departmental follow up email address (sgefu@sgpgi.ac.in) and data specific e-mail addresses e.g. gbc@sgpgi.ac.in, bbs@sgpgi.ac.in, pd@sgpgi.ac.in, etc have been activated. These will be provided to the patients to enable them to send their FU information by e-mail. These emails will be accessed by the department staff who will forward them to the respective SRs who will then contact and respond to the patient.

Group SMS appeal may be sent on mobile networks requesting patients who have not come for FU since last 12 months to contact the department for FU. It is planned to generate a programme whereby an automatic SMS alert can be sent to those phone numbers who have not contacted our disease/ procedure specific mobile phone numbers and those who have not come for FU over the last 12 months. Patients can send SMS “SGEFU” to a pre-designated well publicised 5- digit free mobile number. Department staff will then call the patient at his/ her phone no. and obtain the patient’s FU information.

It is proposed to establish a central FU agency (CFA) which will help participating hospitals/ departments/ consultants to obtain FU information of their patients. This will be internetbased FU through an interactive website (www.followupindia.com). Data (hospital/ department/ consultant name and email, name of patient, address, mobile number, hospital registration number, departmental registration number, date of admission, date of operation/ procedure, date of discharge, etc.) will be already fed in. The patient can log on to the site and feed in any of his/ her data e.g. name, hospital registration number, departmental registration number, date of admission, date of operation/ procedure, date of discharge, etc. which will be linked with the data already fed in and the remaining data will pop up. Patient will then feed his/ her FU information (symptoms and reports) which will go to the respective consultant as an email. The consultant/ SR/ hospital or department staff will then contact the patient via phone, SMS or email.

FU can also be linked to the patient’s bank account number. ‘Any time FU (ATF)’ [cf. Any Time Money (ATM)] can be obtained at the ATMs of banks wherein the patient feeds in his/ her FU data at his/ her bank’s ATM. This data can then be linked to the FU website mentioned above.

Discussion

Follow up (FU) is not complete even in reports from the west. In a recent randomised controlled trial on hernia repair in Netherlands, 66 (10%) out of 660 patients were lost to follow up – only 495 (75%) patients completed follow up at 1 year.[1] Boerma et al (2001) from Netherlands reported quality of life results in 106 patients after bile duct injury repair – 11 (10%) were lost to follow up.[2]FU is better in reports from the USA, as it is easier to trace patients there by their social security number. Lillemoe et al[3] from the Johns Hopkins Hospital reported longterm outcome of repair of bile duct strictures in 156 patients – only 1 patient was lost to FU. FU in several reports from India has been grossly inadequate and incomplete. Most Indian reports have poor and incomplete follow up. The All India Institute of Medical Sciences (AIIMS), New Delhi group reported their results in 363 patients with gall bladder cancer – FU was available in only 103 (28%) patients.[4] There are, on the other hand, very few reports from India with complete FU; Ramesh et al reported 56 patients with chronic pancreatitis and portal hypertension; 3 died and remaining 53 were available for FU up to 19 to 209 months after surgery.[5]

Hospital visit is not essential for FU. Information about any patient’s status can be obtained by non-hospital visit methods of FU including postal and telephonic FU. Thomas et al way back in 1995 reported postal FU in patients with epilepsy.[6] Mathew et al reported lower loss to FU by using reply paid post cards in FU of patients with cancer.[7] Pavlovic et al have recently reported use of internet and web technologies to collect follow up data in clinical trials.[8] Benhamou et al have also shown that tele-medical follow up of insulin pump treated diabetics using a cellular phone, SMS and web-based platform was feasible and even showed a trend towards improved metabolic control.[9]

Our experience shows that, with sincere and concerted efforts, good and almost complete FU is possible even in India. Advances and innovations in information and communication technology need to be utilized by healthcare professionals for obtaining complete FU information of our patients.

Acknowledgements

Prof. SP Kaushik, former Head of the Department (1990-1997) for his ‘obsession’ for accurate and complete records. My faculty colleagues (Drs. Rajan Saxena, SS Sikora, A Kumar, R Lal, A Behari, RK Singh, A Prakash and B Pottakkat) in the department for contributing to the departmental FU system. Prof. SK Mishra and Mrs. Lily Kapoor for introducing me to Telemedicine. Successive generations of SRs who have maintained departmental databases. Mr. Ashish Agnihotri for managing the Departmental databases. Mr. Anil Verma for managing more than 20,000 FU cards. Mr. Kumudesh Mishra, Mr. Mithilesh Kumar Dwivedi and Ms. Varsha Yadav for helping SRs in obtaining postal and telephonic FU of our patients.

References