Look deeper

Quality of life is a term frequently used to describe the impact an illness has on a person's ability to lead a fulfilling life. It is generally considered to encompass a person's social and emotional wellbeing as well as the physical. This comprehensive definition is widely accepted. However, an aspect of the 'quality of life' concept that is frequently overlooked is that it is a very personal term, meaning different things to different people. Recent survey findings have highlighted the wide difference between various definitions of the concept.

The 'Lifepsychol' survey, which is ongoing, is a web-based survey accessible to all. The website invites people with long-term or life-threatening conditions to answer 10 simple questions about the health, treatment and their perception of their quality of life. (A version of the survey for healthy individuals consists of seven questions.) The aim of the exercise is to gain a better understanding of what quality of life means to people diagnosed with long-term conditions.

The following is a selection of over 600 responses to the question "What does quality of life mean to you?":
• "Being of real support to and with others"
• "Being able to appreciate and enjoy experiences and relationships"
• "Spending time with family and having fun"
• "Being able to do simple tasks for myself and to come to terms with my illness"
• "Getting enough sleep, only moderate pain and keeping independent"
• "Having enough money to do the things you want to without having to save"
• "To be able to do what I want when I want, not when my illness lets me"
• "Having a life that you want and makes you happy"
• "Being able to get down on the floor to play with my children"
• "Ability to lead a calm and peaceful life"
• "To wake up and look forward to the day."

This small sample of responses provides a clear indication of the challenge when discussing quality of life: how to measure an intangible concept that is unique to the individual?

Well-established quality of life measures such as the SF36 and EuroQoL impose standardised models. The issues and domains they address are pre-selected, making them an inaccurate reflection of what they are designed to measure. These standardised tests also do not necessarily enquire about issues that patients indicate significantly affect their quality of life. Therefore, these established tests are arguably measures of general health status rather than of quality of life.

Interestingly, responses to the Lifepsychol survey indicate that there are particular issues that consistently affect quality of life in people living with a long-term of life-threatening condition. Of these, the one most frequently selected by patients as having a severe effect on quality of life is 'Suffering from fatigue/low energy levels'. By contrast, healthy people more frequently select 'Deterioration in relationships' as having a severe effect on quality of life. What's even more enlightening about these contrasting views is that many of those deemed healthy are health professionals.

The survey findings also highlight why it is important to appreciate how a condition impacts on quality of life. For instance, people living with rheumatoid arthritis (RA) most frequently select 'Fatigue' to affect their quality of life severely, followed by 'Lack of mobility', 'Pain' and 'Deterioration in independence'. By contrast, people with Parkinson's disease most frequently select 'Lack of mobility or physical function' as having a severe effect on their quality of life, closely followed by 'Fatigue/lack of energy' and then 'Deterioration in independence'. People with diabetes most frequently selected 'Lack of mobility and/or physical function' to affect their quality of life severely.

Perhaps most intriguing is that time appears to alter a person's perspective on how a condition impacts on quality of life. Compared with people who have lived with RA for over 20 years, people who have lived with the condition for six months to a year more frequently select 'Feeling anxious' as severely affecting their quality of life.

Although quality of life has been measured for many years, this has typically meant using standardised measures at the beginning and then at the end of an intervention. Occasionally it may involve an assessment at the midpoint. That approach can be likened to asking someone to draw out a detailed "dot to dot" picture with just three dots.

The need to monitor QoL
Quality of life needs to be monitored, not just measured, to gain greater insight into the lives of people with long term conditions. Furthermore, monitoring can potentially draw attention to changes that need to be made to ensure any new management approach has the desired effect. It may also help to improve adherence and compliance.

Getting patients to take greater control and be responsible for their medical condition is a major objective of many 'self-care' programmes being rolled out across the country. One of the lessons that marketing teams have learned over the years is that if messages are to have real impact, it is vital to engage the interest of the target audience.

If the ultimate aim in healthcare is to deliver the health outcomes that patients most desire (that is, optimum quality of life) then gaining a better understanding of what matters to their quality of life is also arguably the way to engage with patients. For example, a person recently diagnosed with Type 2 diabetes may need to change his diet. Many studies provide evidence that a healthier diet leads to a better quality of life. However, if that person really enjoyed his old diet, he may well judge that his new diet represents, from his own personal perspective, a deterioration in his overall quality of life.

Significant cost savings
Chronic or long term conditions place a significant physical, psychosocial and financial burden on patients as well as the society and services set up to care for them.

Here are some key facts and figures: over 15 million people live with a long term condition in England. This equates to 25 per cent of the UK population. The Department of Health estimates that "the treatment and care of those with long-term conditions accounts for 70 per cent of the total health and social care spending in England, or almost £7 in every £10 spent."

The Department of Health also highlights that patients with long-term conditions are intensive users of the most expensive healthcare services:
• 5 per cent of patients, the majority of whom have one or more long-term conditions, account for 49 per cent of all in-patient hospital bed days
• Long-term conditions account for 31 per cent of the population but use 52 per cent of all GP appointments
• Long-term conditions account for 65 per cent of all out-patient appointments and over 70 per cent of all in-patient bed days
• 80 per cent of primary care consultations and two thirds of emergency hospital admissions in the UK are related to long-term conditions
• The treatment and care of those with these long-term conditions is estimated to account for 69 per cent of the primary and acute care budget in England.

There is evidence that significant benefits can be generated by placing more emphasis on the individual and designing a healthcare service that encourages and supports the self management of long-term conditions. Furthermore, taking a holistic approach to patient care delivers considerable long-term cost savings and benefits, comprising:
• A 77.9 per cent reduction in the average length of stay in hospital
• A 66.7 per cent reduction in hospitalisation
• A 47.1 per cent reduction in physician office visits
• A 45.3 per cent reduction in emergency room visits
• And a 4 per cent reduction in the number of prescriptions received.

People living with a chronic or life-threatening condition often feel overwhelmed and can find it difficult to prioritise their concerns, particularly when consulting a health professional. Patient health outcomes improve when the interpersonal relationship between patient and provider evolves from the predominant dependent model to a co-managed partnership between patient and provider, with clear roles and responsibilities.

This idea supports the need to shift the focus of managing a long term condition from the disease to the individual living with the condition. While each long-term condition has disease-specific features requiring appropriate interventions, other elements are consistent across the spectrum of chronic diseases and define essential measures for effective management. Some pertain specifically to the patient and caregivers, while others focus on the healthcare system.

Take home messages
There are a number of drawbacks with most if not all of the established tools that purport to measure a person's quality of life, but quality of life is a vital metric to aid in the understanding of how patients are affected by their condition. By encouraging people to monitor, track and tackle the issues that define their quality of life, patients and health professionals are more likely to forge a strong relationship. This will lead to a greater understanding of where management and care needs to be focused, better addressing each patient's individual healthcare needs.

Physicians can achieve this by helping patients to talk about quality of life, which, after all, is a subjective measure. As one person who completed the Lifepsychol survey very poignantly remarked: "Don't ever make assumptions about what others may value in their quality of life — ask them!"

The Author
For further details about the Lifepsychol survey please contact Neil Bindemann PhD, managing director of Innervate on neil@innervate.co.uk

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