Personalised care for long-term conditions

 Living with multiple conditions

Mary, aged 76, has diabetes, arthritis, and macular degeneration, and she’s feeling low. She recently lost her husband, Frank, who died after a long period of dementia. She cared for him devotedly for many years, but this occupied most of her time and energy and took a heavy toll on her health and wellbeing.

Mary’s GP reminds her to attend the local diabetes clinic. The specialist nurses are concerned about her test results and urge her to try to eat a healthier diet and take more exercise. Mary nods, but in her heart knows that this advice will be difficult to follow. Her knees are painful, her eyesight is deteriorating, the local shops don’t sell much in the way of healthy food, and she doesn’t feel confident to travel far on her own.

As populations age, increasing numbers of people live with multiple health problems, but health systems have been slow to adapt to this reality. Excellent at caring for single diseases, they seem fragmented and over-specialised when viewed through the eyes of people like Mary. The staff at the diabetes clinic are well-trained to deal with diabetes, but they don’t seem interested in her painful knees. At the eye hospital, two long bus rides away, they have no knowledge of her other health and social problems. She just wishes she could talk to someone who’s interested in her as a person, not just a collection of malfunctioning body parts.

A more personalised approach

Personalised care planning aims to improve care for people like Mary by dealing with their health issues in a more holistic manner. Patients are invited to attend specially scheduled appointments where they discuss problems caused by, or related to, their health, taking account of both their clinical test results and the practical, social and emotional effects of their health state and medical treatments on their daily lives.

Together, patient and clinician identify priorities, what changes the person feels able to make, and what problems need to be overcome. They then agree some realistic goals and develop a plan of action, including relevant sources of support. These might include community facilities, such as exercise or cookery classes, social groups or bereavement counselling.

Personalised care planning is best understood as a continuous cyclical process, not a one-off event. It may span several consultations and be repeated at regular intervals, each consisting of the following stages:

• Preparation: providing relevant information and ensuring tests are up-to-date
• Goal setting: helping patients decide on their priorities
• Action planning: developing a mutually agreed plan
• Documenting: recording the plan, with copies for both patient and clinician
• Coordinating: providing or arranging relevant treatment and support services
• Supporting: agreeing an appropriate follow-up schedule
• Reviewing: a collaborative discussion to assess progress.

Evidence of effectiveness

We wanted to find out if personalised care planning was effective, so we conducted a systematic review of relevant studies (1). Among 19 randomised trials involving more than 10,000 participants, we found evidence that it could lead to improvements in people’s physical and emotional health, their health-related behaviours, and their self-management capabilities.

The best results came from studies where more stages of the care planning cycle were completed, and where this was integrated into regular primary care rather than offered as a stand-alone service.

Sadly, however, clinical research is just as fragmented and specialised as clinical service delivery. All the studies we found focused on specific conditions, rather than multiple long-term conditions, and only three looked at the cost-effectiveness of this approach. So more research is needed to make a complete assessment.

Implications for practice

Despite these gaps in the evidence, personalised care planning has the potential to make a significant difference to care for people with long-term conditions, as long as the following features are in place:

• A focus on patients as persons, not just on their specific conditions,
• Collaborative conversations with shared decision-making,
• Explicit recognition of both the clinician’s priorities and those of the patient,
• Provision of support for self-management and behaviour change, including non-medical community support,
• Co-ordination and integration of care around the individual.

Achieving this requires fundamental changes to the organisation and delivery of primary care to enable a more proactive, anticipatory and integrated approach, and staff may need training in how to elicit patients’ goals and priorities. The priority is to avoid imposing an overly directive model of care that can undermine people’s confidence to self-manage and live well with their conditions.

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1. Coulter A, Entwistle VA, Eccles A, Ryan S, Shepperd S, Perera R. Personalised care planning for adults with chronic or long-term health conditions. Cochrane Database of Systematic Reviews. 2015 (Issue 1): Art. No. CD010523. Available at: https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD010523.pub2/full/
   

  Tags:

adult, asthma, chronic, chronic disease, diabetes mellitus, glycated hemoglobin a, health status, heart failure, humans, kidney failure, mental disorders, patient care planning, patient participation, randomized controlled trials as topic, self care