Supporting people with long-term conditions (LTCs) during national emergencies
March 25, 2020
Jamie Hartmann-Boyce, Kamal R. Mahtani
On behalf of the Oxford COVID-19 Evidence Service Team
Centre for Evidence-Based Medicine, Nuffield Department of Primary Care Health Sciences
University of Oxford
Correspondence to firstname.lastname@example.org
Disruption of care, diversion of healthcare resources, and interruptions to medical supplies can all impact patients with long term conditions (LTCs) during national emergencies.Some LTCs may be further exacerbated by increased stress and changes in diet and activity patterns. The data does not rule out any LTCs as not being at risk of neglect, but particularly highlights cardiovascular disease, diabetes, older people and people in deprived areas as being at increased risk. Suggestions for mitigation strategies can be grouped into planning and response phases, and broadly focus on collaboration, communication, and continuity planning. Such consideration may be needed during the current Covid-19 pandemic. Recent guidance from the Royal College of General Practitioners may facilitate this.
During national emergencies and pandemics, health care services and supply chains may be disrupted. Health care resources may be limited and a focus on controlling a pandemic will shift focus from other areas. These may include routine care of those with long-term conditions (LTCs), such as asthma, diabetes, and hypertension, among others. This routine care is important to managing LTCs, regardless of circumstance.
Management of LTCs may also be of acute importance during the COVID-19 pandemic. Many common LTCs may put people at higher risk of COVID-19 severity and complications. Knowledge of other infections suggests that it is not just presence of these conditions, but how well they are controlled, that will contribute to different outcomes from infection (e.g. tighter glucose control is likely to be a protective factor in people living with diabetes). Stress can exacerbate some LTCs, as can inactivity, changes to diet, and issues with accessing healthcare. All of these factors are likely to arise as supply chains are disrupted, food stock is temporarily depleted, and people living with LTCs are asked to self-isolate.
We set out to review the evidence on management of LTCs during pandemics and national emergencies, to evaluate the indirect risks posed by these situations, and to summarise the strategies proposed to mitigate these risks.
Much of the evidence related to LTCs and national emergencies focuses on how infection is manifested in people living with LTCs. This is a separate question from that posed here. The limited evidence available does suggest that LTC management is at risk of neglect during national emergencies. Almost all evidence is at best observational in nature, and most comes from studies of natural disasters (e.g. hurricanes, floods). Below we summarise evidence from reviews of this observational data, as well as from key primary sources and national and international guidelines. We summarise the recommendations from the reviews as to best ways to mitigate these risks.
Are LTCs at risk of being neglected? What are the mechanisms through which this operates?
Yes, they are. There are numerous examples of suboptimal management of LTCs and disruption of care contributing to adverse health outcomes during and post- national emergencies. This operates through direct routes (e.g. infection during a pandemic, injury during a natural disaster) as well as through indirect routes. The latter is the focus of this review.
Our review identified the following indirect drivers of suboptimal care:
- Diversion of health care resources
- Interruption to routine care
- Interruption to medication supply
- Increased stress
- Changes in food supply
- Changes in activity levels
- Disruptions in transport
A 2017 systematic review of human health following flood and storm disasters noted that disasters are indirectly responsible for exacerbation, onset, and worsened management of LTCs, driven both by their effects on individuals and health service delivery, which affects management and continuity of care. The review authors reported that current responses to disasters may be suboptimal, with teams over-prepared in regard to disaster response and under-prepared for chronic or routine complaints after natural disasters. Similarly, a narrative review from 2005 addressing prevention and control of chronic diseases during natural disasters notes that lack of access to routine health care is a leading cause of mortality after disasters, as are exacerbations caused by conditions introduced by these disasters (e.g., lack of food, physical and mental stress).
Though much of the literature comes from natural disasters, the sparse literature on pandemics as they relate to LTC management has identified how indirect health impacts can further increase morbidity and mortality. Causes of this phenomenon include diversion or depletion of resources, and decreased access to routine care resulting from inability to travel, fear, or other factors. For example, during the 2014 West Africa Ebola epidemic, lack of routine care for other conditions is estimated to have contributed to 10,600 additional deaths in Guinea, Liberia, and Sierra Leone. Surges in hospital admissions for influenza and pneumonia during the 2009 influenza pandemic were associated with statistically significant increases in deaths attributable to stroke and acute myocardial infarction. Authors summarising this literature correctly assert that distinguishing which deaths are attributable to the pandemic itself and which are merely coincidental may be impossible.
Are certain patient groups or LTCs at particular risk?
To some extent all LTCs risk being neglected during national emergencies and pandemics, but certain LTCs and groups have been highlighted in the literature as points for particular focus.
There is an interaction between LTCs and deprivation levels, with those living in more deprived areas more likely to have one or more LTC. It may therefore be reasonable to assume that those living in higher levels of deprivation will require more support, and be at more risk of LTC exacerbation during pandemics.
Most studies focus on adults, but literature on paediatric populations suggests a similar risk of LTC exacerbation during disasters. In a study following children and adolescents with pre-existing conditions after Hurricane Katrina, chronically ill children and adolescents experienced more disruption in care and developed more new symptoms than those without.
Older people are also particularly vulnerable to disasters, as identified from a 2010 systematic review. This vulnerability is multifactorial in origin but incudes the increased presence of LTCs in older age. The authors note: “Exacerbations of underlying health conditions in postdisaster settings are not random. They follow a predictable pattern where we see a worsening of underlying cardiovascular and respiratory diseases, and instability of preexisting diabetes mellitus.”
A 2019 review (not systematic) highlighted that patients with complex, chronic medical conditions are at an increased risk of morbidity and mortality when normal health care services are disrupted. They included in this definition those chronically hospitalised, people in chronic care facilities, people dependent on technology for disease management, people who are oxygen dependent, people dependent on ventricular assist devices, people on chronic dialysis, people who are immunosuppressed, transplant patients, end-stage chronic disease, pregnancy, and those with BMI ≥40 kg/m2.
A 2017 systematic review aiming to elucidate the health problems following flood and storm disasters suggested an increase in cardiovascular disease and diabetes outcomes in the short-and long-term following natural disasters, whereas the available information on changes in respiratory illness was contradictory. Specific conditions in which incidence was increased following disasters included stroke, acute myocardial infarction, and diabetes complications. Data on these is summarized below.
There is some evidence to suggest that hypertension increases after disasters. In addition, acute and chronic stress is thought to increase the risk of cardiovascular disease, whether through driving unhealthy behaviours or through increased cortisol levels. In a single-centre retrospective cohort study comparing 2 year periods before and after Hurricane Katrina, a three-fold increase in acute myocardial infarction was observed. Data suggest that this increase may have been driven by a number of factors, including decreased access to preventative health services and potential medication and therapeutic noncompliance attributable to stress, including that caused by prolonged lack of employment.
A number of individual studies and reviews have identified diabetes as a condition of particular risk during emergencies. A retrospective cohort study (n = 88) before and after a 1999 earthquake in Turkey noted that in people with type 1 diabetes living in the earthquake zone, HbA1c and insulin requirements increased significantly at 3 months after the earthquake. Similarly, a study following a 1995 earthquake in Japan (n = 177) detected a significant temporary increase in mean HbA1c level after the earthquake. The most significant factor associated with an increase in HbA1c was change in diet due to reduced access to certain foods.
An observational study in 1,795 adults (T1 and T2DM) with measurements six months before and 6-16 months after Hurricane Katrina found that, in the patients in receipt of state healthcare (but not those in receipt of private or Veterans Affairs healthcare), HbA1c levels increased significantly after the disaster. Mean systolic blood pressure increased in all groups. The authors note that in this case the disaster not only had a significant effect on diabetes management, but also exacerbated existing disparities. In the UK, a longitudinal study in people with DM before and after floods in Hull and East Yorkshire (n = 1743) found a rise in mean HbA1c of individuals affected by the floods comparing 12 months before the floods with 12 months after, but not in those unaffected. The difference was mainly in insulin-treated patients.
What has been suggested to mitigate these risks?
Risk mitigation suggestions in the literature predominantly fall under two phases: planning and response. Most of the literature focuses on preparation as opposed to response.
Strategies suggested include:
- Collaboration, including the role of community-based partnerships
- Development of resources for people living with LTCs, including print and web-based educational materials and access to support telephone lines
- Proactive review of patients requiring care for LTCs and their possible needs if healthcare services are disrupted
- Clear point of contact for patient care should disasters/emergencies occur
- Improving identification and tracking mechanisms for people living with LTCs
A 2019 review (not systematic) of disaster care considerations in chronically ill people, pregnant women, and people with BMI ≥40 kg/m2 evaluated the literature (narratively, without critical appraisal). They suggested the following were the most successful ‘planning stage’ strategies based on the available literature: disaster preparedness incorporated into primary health care management; preemptive identification and contingency planning for patients at risk for decompensation; integration of community-based organisations in the planning process; and designation of regionalised specialty centres to handle the most complex patients.
In a 2019 systematic review of diabetes management during disasters, a consistent theme was that partnerships between the diabetes world and preparedness world need to be established in advance. The review suggests educational resources to teach people living with diabetes about self-management and disaster planning are essential, and that collaborations among healthcare professionals, emergency planners and other entities can increase the resiliency of people with diabetes post disaster. The review also highlighted the role of community-based partnerships, including organisations such as the Red Cross, universities, pharmacies, health departments, and professional organisations. They give the example of Kentucky (USA), which sponsored a continuing education program with experts from the state diabetes team and state preparedness team. The review includes an appendix with examples of key resources.
A 2008 review (not systematic) of disaster preparedness and the chronic disease needs of older adults suggested having professionals from diverse fields work and train in coalitions, ensuring that advocates for older adults participate in community-wide emergency preparedness, creating a list of volunteers willing to help in an emergency, improving identification and tracking methods for older adults and their health information, and using community mapping data to identify areas where many older adults live.
A report from the US Occupational Safety and Health Administration outlining preparedness for pandemic influenza suggests that “protocols for triage and education of patients should be developed,” with hotlines and websites to provide education and self-care, both for those with the infection but also for management of other health conditions. British government guidance on influenza pandemic preparedness and response suggests preparations include the review of patients with long-term conditions and planning for potential reduction in outpatients’ clinics. A systematic review of 7 studies of cancer patients during and after natural and man-made disasters found most studies recommended patient education and clear points of contact for patient care.
Strategies suggested include:
A 2019 review (not systematic) of disaster care considerations in chronically ill people, pregnant women, and people with BMI ≥40 kg/m2 suggested the following were the most successful ‘response stage’ strategies based on the available literature: appropriate triage and resource allocation; appropriate transfer to specialty centres for complex care; and communication between local, state and federal agencies. They also suggested clustering of special populations into special medical needs shelters and alternative care facilities, though this is more relevant to natural disasters and less so to pandemics.
- Evidence relating to LTC management during medical emergencies, such as the current COVID-19 pandemic, is mainly focussed on the direct impact of infection on people living with LTCs
- There is limited evidence on the indirect effects of pandemics on LTCs, mainly relating to changes in healthcare provision. Evidence from natural disasters is more prevalent, but may be limited in its generalisability.
- The evidence we do have suggests LTCs are at risk of neglect during pandemics and national emergencies. Diabetes and cardiovascular disease have been particular focuses for research, but whether this is because these are the conditions most affected is not clear. Older adults and people living in deprived communities may be particularly at risk.
- Suggestions for mitigation of indirect risks include coordination, communication, patient education, and continuity planning.
- Practitioners may consider ways of proactively identifying those patients with LTC most at risk of suboptimal management to ensure their necessary care is maintained.
Disclaimer: The article has not been peer-reviewed; it should not replace individual clinical judgement and the sources cited should be checked. The views expressed in this commentary represent the views of the authors and not necessarily those of the host institution, the NHS, the NIHR, or the Department of Health and Social Care. The views are not a substitute for professional medical advice.
Jamie Hartmann-Boyce is a departmental lecturer and deputy-director of the Evidence-Based Health Care DPhil programme within the Centre for Evidence-Based Medicine in the Nuffield Department of Primary Care Health Sciences, University of Oxford.
Kamal R. Mahtani is a GP, Associate Professor and Deputy Director of the Centre for Evidence-Based Medicine, Nuffield Department of Primary Care Health Sciences, University of Oxford. He is also an Associate Editor at the BMJ Evidence-Based Medicine journal and Director of The Evidence-based Healthcare MSc in Systematic Reviews
|((Chronic Disease[MeSH Terms]) OR (Long term condition OR longterm condition OR chronic condition OR chronic disease OR comorbidity OR co-morbidity OR multimorbidity OR multi-morbidity OR diabetes OR asthma OR heart failure OR heart disease OR angina OR hypertension)) AND (disaster[ti] OR tsunami[ti] OR hurricane[ti] OR flood*[ti] OR earthquake*[ti] OR drought*[ti] OR pandemic*[ti] OR epidemic*[ti] OR outbreak*[ti])
|(pre-existing OR preexisting) AND (natural disaster[ti] OR tsunami[ti] OR hurricane[ti] OR flood*[ti] OR earthquake[ti] OR drought[ti] OR pandemic[ti] OR epidemic[ti] OR outbreak[ti])
|(“longterm condition” OR “long-term condition” OR “pre-existing condition” OR “pre-existing medical condtition” OR “chronic disease” OR “chronic disorder”) AND pandemic AND (“routine care” OR “care continuation” OR preparedness OR medication)