Self-management for chronic conditions in low- and middle-income countries: how can we know what works?

Self-management of chronic conditions is an approach to engaging people in their own health care. It places increased responsibility on the patient for monitoring their condition and their adherence to treatment. Wherever health systems are under resource strain, self-management is promoted as a means to increase patient investment in their treatment plan, thus improving treatment adherence and reducing use of costly services. Initiatives to support self-management have included text messaging reminders to monitor blood pressure or blood glucose, and community peer groups to support adherence to medications and lifestyle advice. More recently, the COVID-19 pandemic has further focused attention on self-management of chronic conditions, for example for vulnerable patients who are self-isolating. Despite increased attention and resources devoted to self-management for chronic conditions, evidence of the effectiveness of self-management limited. This is particularly true in low- and middle-income countries, where self-management is proposed as one response to the challenges that accompany ageing populations, a rapidly increasing prevalence of non-communicable diseases and multi-morbidities, and rising health care costs. One reason for this lack of evidence is the absence of a common understanding of what self-management means in different contexts, and a standard definition and tool for its measurement. While some work has been done to identify dimensions of self-management of chronic conditions in higher income settings, measures of this concept remain inconsistent. They have also been largely determined without input from all affected stakeholders in the health system. This is despite evidence that self-management is understood differently by health professionals and lay people. To characterise self-management programmes, to evaluate and compare their effectiveness over time and across settings, more work is required to develop tools for measuring self-management that can be adapted to different contexts. There is also a lack of consensus on the goals of self-management. Most self-management support initiatives focus on an ultimate goal of improved disease outcomes, putting the onus on patients to better manage their own conditions. The impact of these initiatives is not inherently positive. The added responsibility put on patients can represent a burden for many of them, adding to the already significant workload of patient-hood. In many low- and middle-income countries, where health systems are often-fragmented and under-resourced and social support systems are weak, the patient workload may already be particularly heavy. Patients face the work of, for example, financing health care costs from household resources or traveling long distances to seek specialist care. For them, the added responsibility of self-management at home may present a burden rather than an opportunity for improved care. Rather than a focus on disease control, self-management must instead be about supporting patients to “live well” with their conditions. To do so, any initiatives must not assume that all individuals have access to the same informational, social and psychological resources. Instead, they must be tailored to the varying needs, capacities and expectations of different patients.   Key references  van Olmen J, Ku GM, Bermejo R, Kegels G, Hermann K, Van Damme W. The growing caseload of chronic life-long conditions calls for a move towards full self-management in low-income countries. Global Health 2011; 7: 38. Nolte E, Merkur S, Anell A, editors. Achieving person-centred health systems: evidence, strategies and challenges. Cambridge: Cambridge University Press, 2020. Boger E, Ellis J, Latter S, et al. Self-Management and Self-Management Support Outcomes: A Systematic Review and Mixed Research Synthesis of Stakeholder Views. PLoS One 2015; 10(7): e0130990. May C, Eton DT, Boehmer KR, et al. Rethinking the patient: using Burden of Treatment Theory to understand the changing dynamics of illness. BMC Health Services Research 2014; 14 (1), (281).  

Continuity and coordination of care at the heart of integrated people-centred health services (IPCHS)

There are many descriptions of integrated care. I particularly relate to one framed by National Voices: ‘’My care is planned with people who work together to understand me and my carer(s), put me in control, coordinate and deliver services to achieve my best outcomes.”  It speaks of a collaborative approach to achieve what really matters to the individual and their carer(s) and places coordination of care and support at the heart of integrated care.  For without effective coordination, even the most holistic care plan still leads to fragmented care, duplication, waste and harm.   Continuity and coordination are vital, now more than ever. With increasing specialisation in healthcare, people meet many providers and frequently move between various teams at different points in the system as they experience multiple episodes of health and social care. At best, this may be well intentioned pursuit of the best quality care from the right professional in the right setting. At worst, it is chaotic poor quality care. In fact, both are a challenge, particularly for people who have complex or multiple conditions.  Although mainly driven by ageing, when often associated with frailty, multimorbidity is not confined to later life. It is increasingly prevalent in mid-life, heavily influenced by socioeconomic circumstances, and often manifest as combined mental and physical health problems. Each episode of care must be part of a continuum that is proactive, planned, coordinated, and enabled by good communication and effective collaboration. These skills and behaviours are at the heart of interdisciplinary practice, relevant at all life stages - from early years intervention for children; case management for adults with multiple chronic diseases; comprehensive geriatric assessment for an older person living with frailty; or person-centred palliative and end of life care. In each scenario, care by multiple providers can be coordinated by a link worker, care navigator or case manager so that care and support are coherent and continuous.  This relational continuity is easier to achieve if all involved can access the information required to make the best possible decisions together. As a geriatrician I understand that navigating a complex web of care is challenging for patients, carers and for professionals.  As a daughter, I see the benefits when the system works well for my 91 year old father: his trusted general practitioner understands what matters to him and shares his electronic anticipatory care plan so emergency services know how to respond if chronic conditions flare up. Recently this meant out of hours providers quickly coordinated an ambulatory care response instead of a hospital admission – avoiding the risk of deconditioning and also reducing demand on the system. While this doesn’t yet happen reliably for everyone, all of time, responding to the pressures of COVID-19 has made us more aware of the need to improve collaboration, continuity and coordination of care.     For evidence and practical advice, I suggest you read the “Continuity and coordination of care: a practice brief to support implementation of the WHO Framework on integrated people-centred health services” document. This highlights examples from high, low and middle income economies of actions in eight priority areas: Continuity with a primary care professional Collaborative care planning and shared decision-making Case management to reduce gaps in care, anticipate crisis and plan future care. Collocated services or a single point of access to different providers and supports Transitional and intermediate care for safe, coordinated and timely transfers between settings and to enable recovery, independence and confidence as health changes. Comprehensive care that includes urgent response in evenings and weekends and an effective interface with acute hospital services. Technology to exchange information, enable adoption of good practices, and identify and target people at greatest risk who have the most to gain from interventions. Building capability of the workforce in all sectors so that everyone has the right skills and competences to fill their roles. One example highlights the role of Community Health Agents in Brazil. During 2019 I was  privileged to work with a team from Sao Paulo State Secretary of Health and Regional Department of Health in our Transforming Together project in Litoral Norte, Brazil.  Four municipalities worked together across sectors, and with community partners, to improve continuity and coordination of people centred integrated care.  Community Health Agents, empowered and supported as Integrated Care Champions in their neighbourhoods, mapped existing community resources and built partnerships with other professionals and sectors to establish local networks of coordinated care and support. Primary care services are now more resilient from support from community partners for prevention and early intervention, mental wellbeing initiatives in schools, community rehabilitation and palliative care, and neighbourhood care for 720 vulnerable families. This integrated way of working during 2019 helped the municipalities implement a coordinated regional response to COVID-19. Inspiring work by inspirational people!    What can you do to ensure continuity and coordination of care are at the heart of integrated people-centred health services as you build back better after COVID-19?