In this blog for others working in General Practice, Dr GP Lynda Ware considers the evidence for personalised care planning for patients with chronic or long term health conditions.
Page last reviewed: 27 July 2022
From the comfortable distance of six months’ retirement from General Practice, I read with interest the implications of this Cochrane Review Personalised care planning for adults with chronic or long‐term health conditions, published in March 2015, looking at personalised care planning for adults with chronic or long-term health conditions. Common sense and experience might well lead us to expect that only good can come from involving patients more closely in their own care. But can this be demonstrated to be the case? And if so, how might it be incorporated into a service already struggling to cope with ever-increasing demands on time and resources?
What is personalised care planning?
It can be described as a collaborative process in which patient and clinician discuss diagnosis and treatmentSomething done with the aim of improving health or relieving suffering. For example, medicines, surgery, psychological and physical therapies, diet and exercise changes. of the condition and then together formulate appropriate management goals (Burt et al., 2012). It aims to ensure that the patient’s values and concerns shape the way their health problems are handled. It involves a proactive rather than reactive approach to care, using specially scheduled consultations, often on a one-to-one basis. It aims to empower and inform the patient.
What is involved?
- Preparation: collecting baseline dataData is the information collected through research. (blood tests etc); sharing information about the condition.
- Goal setting: Discussion about what the patient understands of their condition, their beliefs, concerns and preferences. Agreement on management goals.
- Action planning: agreed jointly between clinician and patient.
- Documenting: possibly as a single shared record or two separate records for clinician and patient to hold.
- Co-ordinating: the clinician ensures that appropriate agreed interventions are put in place.
- Supporting: an agreed timetable of follow up.
- Reviewing: a joint review of progress and forward planning.
A time consuming process but is it worth the effort?
What have the studies shown?
19 studies (RCTs or cluster RCTs) were included in this Cochrane reviewCochrane Reviews are systematic reviews. In systematic reviews we search for and summarize studies that answer a specific research question (e.g. is paracetamol effective and safe for treating back pain?). The studies are identified, assessed, and summarized by using a systematic and predefined approach. They inform recommendations for healthcare and research. and involved 10856 participants. These studies focussed on the management of diabetes (12), mental health (3), asthma (1), heart failure (1), end stage renal disease (1) and various chronic diseases (1). Sixteen of the studies were based in General Practice and three in hospital clinics. All involved face-to-face or telephone support. Comparisons were made between the interventions and usual care. Follow-up varied from 1.5 to 12 months.
And the results were………
- Diabetes : HbA1c was 0.24% lower in the interventionA treatment, procedure or programme of health care that has the potential to change the course of events of a healthcare condition. Examples include a drug, surgery, exercise or counselling. groups in 9 studies
- Systolic blood pressure readings were 2.64mm Hg lower in the intervention groups in 6 studies
- Diastolic blood pressure showed no significant difference in 4 studies
- Cholesterol and BMI: no significant difference to either (5 and 4 studies respectively)
- Asthma: one studyAn investigation of a healthcare problem. There are different types of studies used to answer research questions, for example randomised controlled trials or observational studies. showed some improvement in lung function and asthma control
- Psychological health: the pooled results from 5 studies showed a small positive effect with personalised care planning but 1 study showed a greater improvement in the control group.
- Subjective health status: no clear benefit was demonstrated either in generic or condition specific health status
- Self management capabilities: a small improvement in self efficacyThe extent to which an intervention (for example a drug, surgery, or exercise), produces a beneficial result under ideal conditions. was shown from the pooled results of 5 studies
- Other: 5 studies showed no improvement in exercise levels but a small positive effect on self-care activities
There were no reported adverse effects. The positive impact of personalised care planning was greater as more stages of the process were completed, when contacts were more frequent and when the patient’s own clinician was involved.
How reliable were the data?
Each of the included studies raised concerns about riskA way of expressing the chance of an event taking place, expressed as the number of events divided by the total number of observations or people. It can be stated as ‘the chance of falling were one in four’ (1/4 = 25%). This measure is good no matter the incidence of events i.e. common or infrequent. of biasAny factor, recognised or not, that distorts the findings of a study. For example, reporting bias is a type of bias that occurs when researchers, or others (e.g. drug companies) choose not report or publish the results of a study, or do not provide full information about a study. in respect of one or more criteria. Results were pooled from studies with different outcome measures but which appeared to be measuring the same or very similar constructs. This introduced a degree of heterogeneity. Some studies were small. Of the 19 studies, 13 were conducted in the USA and 12 focussed on diabetes. It is difficult therefore to know how their results might be applied in different health settings and to other patient groups. In some studies personalised care planning was not the primary focus of the evaluation and the kind of care planning used was not standardised in its content or delivery. Only 4 studies commented on the patient’s perception as to whether their goals had been achieved.
There are seven ongoing studies with published protocols which may add valuable further information.
What next?
The principle of personalised self care is endorsed by WHO but international surveys reveal that many people with long-term conditions do not have access to appropriate support from their clinical team to plan and self manage their condition(s) effectively.
This Cochrane review shows that compared to usual care personalised care planning improves some physical and psychological health indicators and patients’ ability to self manage their condition. However, in order to be implemented effectively, a fundamental change in the organisation and delivery of primary care in most countries would be needed to enable this to happen (Coulter et al., 2013).
Further well organised studies are needed to assess how effective this intervention is, how it should be delivered and by whom, as well as its cost-effectiveness. Studies need to have longer term follow up and comparable intervention protocols. The impact on multiple co-morbidities has not been evaluated nor the effect of its implementation on patients of different socio-economic and educational backgrounds.
So, in Utopia….
….where time, money, manpower and resources are plentiful, it is likely that personalised care plans would improve the management of chronic illnessA health condition marked by long duration, by frequent recurrence over a long time, and often by slowly progressing seriousness. For example, rheumatoid arthritis.. Undoubtedly it would be welcomed by most patients and, probably, many clinicians too. Research to date shows small improvements in certain health indicators but further targeted trialsClinical trials are research studies involving people who use healthcare services. They often compare a new or different treatment with the best treatment currently available. This is to test whether the new or different treatment is safe, effective and any better than what is currently used. No matter how promising a new treatment may appear during tests in a laboratory, it must go through clinical trials before its benefits and risks can really be known. are needed to be sure that investment in this intervention is merited in terms of positive health outcomesOutcomes are measures of health (for example quality of life, pain, blood sugar levels) that can be used to assess the effectiveness and safety of a treatment or other intervention (for example a drug, surgery, or exercise). In research, the outcomes considered most important are ‘primary outcomes’ and those considered less important are ‘secondary outcomes’. and cost-effectiveness. Primary care services are stretched and extra work must be added only after scrupulous assessment of its merits and implications.
(And, of course, Utopia would probably also offer more than 24 hours in a day…!)
Links:
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 ReviewsIn systematic reviews we search for and summarize studies that answer a specific research question (e.g. is paracetamol effective and safe for treating back pain?). The studies are identified, assessed, and summarized by using a systematic and predefined approach. They inform recommendations for healthcare and research. 2015, Issue 3. Art. No.: CD010523. DOI: 10.1002/14651858.CD010523.pub2.
Burt J, Roland M, Paddison C, Reeves D, Campbell J, Abel G, Bower P. PrevalenceThe proportion of a population who have a particular condition or characteristic. For example, the percentage of people in a city with a particular disease, or who smoke. and benefits of care plans and care planning for people with long-term conditions in England. J Health Serv Res Policy 2012;17(Suppl 1):64-71. Available from: http://hsr.sagepub.com/content/17/suppl_1/64.long
Coulter A, Roberts S, Dixon A. Delivering better services for people with long-term conditions: building the house of care. London: The King’s Fund; 2013. Available from: http://www.kingsfund.org.uk/sites/files/kf/field/field_publication_file/delivering-better-services-for-people-with-long-term-conditions.pdf
Why is it Utopian to hope that primary care staff will listen to patients, elicit their goals and involve them in planning their own care?
Thank you for your comment.
No, of course these principles are fundamental to excellent primary care – in fact to all patient/doctor interactions. My (slightly frivolous) reference to the Utopian ideal was to highlight the difficulty in General Practice today in doing everything to the standard doctors expect of themselves and their patients would wish to receive. The services described in the Cochrane review above are comprehensive and would entail a significant time and manpower commitment. (It is unsurprising that best results were found when the patient’s own physician was the key player!) Just now, my GP colleagues are struggling to offer basic, thorough care. Any added work would need to be conclusively shown to be of resounding benefit before being incorporated into their already busy schedule.