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A lack of medical information could make it more difficult for patients to recover after they are discharged from hospital. Patients with long term conditions such as cancer or diabetes, called chronic non-communicable diseases (NCDs), need repeated visits to doctors. Surveys in India included hundreds of patients with NCDs and showed that only half receive ongoing advice on how to self-treat and manage their conditions. Barely a quarter of patients were told to make changes to their lifestyle.

Written medical notes were also inadequate. More than two-thirds of patients were sent home from hospital with notes that did not contain the information needed to secure continuity of care. In low-income/resourced countries such as India where there are no centralised electronic records, this means that healthcare staff have little to go on when patients next seek help. 

The study found links between low-quality information when patients leave hospital, the worsening of their conditions and even death. This suggests an urgent need for better protocols, documentation and training to improve the management of chronic conditions.  This finding is relevant for healthcare systems across the world.

What’s the issue?

Patients with long-term illnesses such as cancer, respiratory conditions, cardiovascular disease and diabetes (NCDs) often see a series of different healthcare professionals over long periods of time. They receive care in hospital and in the community, and may need to self-treat at home, perhaps by taking regular medication or by changing their lifestyle.

These patients need seamless care to achieve the best outcomes. Both patients and professionals need access to previous diagnoses, information on treatments and medication, lifestyle advice and follow-up instructions.

In countries without centralised electronic health records or a good paper-based system, continuity of care frequently depends on verbal instructions given to patients and various notes or paper records that patients carry with them from appointment to appointment. 

This study suggests that, in reality, neither the verbal nor written information given to patients when they leave hospital is adequate. International research has shown that this lack of information can compromise treatments so that patients’ conditions get worse and they are more likely to be readmitted to hospital. 

What’s new?

The study surveyed 546 NCD patients attending three public hospitals in the Indian states of Himachal Pradesh and Kerala in 2014 -  2015. Of these patients, 305 were men and 241 were women. Most (59%) were aged 60 or older. Trained researchers interviewed patients at admission, discharge from hospital and at follow up appointments five and eighteen-weeks later. The researchers asked patients to explain what information and advice they had been given, and what they understood. 

The researchers gathered supporting information, including medical history, and they examined notes, prescriptions and other pieces of paper the patients brought with them.

The study showed that:

  • most patients (89%) recalled having their condition explained to them on admission
  • on discharge, only half (50%) said they were told about ongoing treatment or management
  • less than a quarter (23%) recalled being given lifestyle advice
  • just 3% of patients said they had all the key discharge information verbally explained to them
  • only 31% of discharge notes contained all of the key details needed to ensure effective continuity of care (diagnosis, treatment, follow-up visit and lifestyle advice).

The researchers judged that only one-quarter (25%) of patients had a good understanding of all the important details of their condition and post-discharge care requirements. 

Although other influences on death could not be fully investigated, by the 18-week follow up point, patients who received low-quality discharge notes were three times more likely to have died. 

Why is this important?

The study shows that a high proportion of patients leave hospital without adequate information or understanding of how to manage their conditions. This could severely undermine the treatment they receive from the next doctor they visit and lead to poor self-management at home. Indeed, the study found a link between the poorest levels of documented information and patient mortality.

This is particularly important for NCDs, which are long-term and require continuous management. Poor understanding of their disease, or the costs, mean that patients frequently go long periods without medical help. Some 13% of patients surveyed said they would only see a healthcare professional again if they felt unwell. The coronavirus pandemic, and the fear of venturing out, is likely to reduce this number still further.

The study highlights the possibility of “paternalistic” attitudes among medics in India and potentially elsewhere. The communication styles used by healthcare professionals may intimidate patients and make them feel unable to ask questions.

What’s next?

The study calls for improved training of healthcare professionals to improve their communication with patients. Better guidelines on how doctors should fill out the medical notes that patients carry with them are also needed.

Some changes already under way could help. India has embarked on an ambitious program to introduce electronic health records across its government hospitals and community centres. Its priority is to enable the administration of health insurance, not to provide and secure better patient information. However, the system could be adapted to address some of the problems identified. For example, it could include a template that doctors are expected to fill out after each appointment, and to share with patients.

Technology is not the only fix. The researchers call for wider awareness of the need for high quality communication, both verbal and written. Patients are happy to carry a booklet in which key details could be recorded. Healthcare professionals need to be encouraged to write in them and this could improve communication between the many private and public healthcare professionals that Indian patients tend to visit.

You may be interested to read

The full paper: Humphries C, and others. Investigating discharge communications for chronic disease patients in three hospitals in India. PLOS One 2020;15:e023043815

Ibrahim H, and others. Can universal Patient-Held Health Booklets promote continuity of care and patient-centred care in low resource countries? The case of MongoliaBMJ Qual Saf. 2019;28:729-740

Gustafsson L and others. The content and completeness of women-held maternity documents before admission for labour: A mixed methods study in Banjul, The Gambia. PLoS One. 2020 Mar 6;15:e0230063

Project website: Clinical handover and global health 

Funding: This research was supported by the NIHR Collaboration for Leadership in Applied Health Research and Care West Midlands (NIHR CLAHRC WM) and by the NIHR Birmingham Biomedical Research Centre at the University Hospitals Birmingham NHS Foundation Trust and the University of Birmingham. 

Conflicts of Interest: The study authors declare no conflicts of interest.

Disclaimer: NIHR Alerts are not a substitute for professional medical advice. They provide information about research which is funded or supported by the NIHR. Please note that views expressed in NIHR Alerts are those of the author(s) and reviewer(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.

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