Living With Parkinson’s Disease
seeks to cure PD, I know that there is science out there that will soon bring improved treatments. Armed with this information, I can drive on with optimism, belief and a sense of purpose, because The Cure Parkinson’s Trust and the EPDA may have a role in accelerating a brighter future, not just for me, but for everyone with PD. This optimism satisfies the ‘becoming’ aspect of my QoL concept.
These three aspects of life, along with other more personal influences, result in a good QoL. This description is given for one reason, to illustrate the important point that a patient-focused assessment of QoL can give very different results to a health-related QoL assessment tool.
Patient Perceptions of Quality of Life and How They Influence Management Decisions It would be wrong to suggest that patients alone should make decisions on the management of their PD, but it is accurate to say that the only person that can fully assess the QoL of an individual patient, is the patient himself or herself. This emphasises the importance of communication between patients and their managing physicians. Unless there is adequate communication, there is little chance of tailoring treatment to suit that person’s lifestyle and their personality. For example, how would my consultant know that my ability to speak was one of the most important aspects of my life, unless I told him? The importance of this information when choosing the right course of treatment could make a dramatic difference on my day-to-day life. To a neurologist or neurosurgeon observing my dyskinesias, the option of deep brain stimulation (DBS) may seem like a logical choice. However, any procedure that could potentially compromise my ability to communicate is not worth the risk for me, even if it benefits my motor symptoms.
Examples such as this highlight the importance of personalised medicine and shared decision-making. Communication between doctors and patients and joint decision making, is not only about discussing treatment options. Engaging patients to increase their understanding of PD and how it may affect them in the future is also of key importance to improving QoL. A Japanese study in 2004 showed that there was a clear correlation between patient QoL and patient knowledge about PD.2
It seems logical to conclude from this study that
patient education can positively affect attitude to life. Similarly, Donald and Katherine Grosset at the Institute of Neurological Sciences, Glasgow, identified a significant positive correlation between QoL and the satisfaction of a patient – and the more involved a patient is in the administration of their own treatment, the more satisfied they are.3
1. University of Toronto’s Quality of Life Research Unit, The Quality of Life Model, Toronto, Canada, 2010.
2. Shimbo T, Goto M, Morimoto T, et al., Association between
So by encouraging better communication with patients, and by engaging their interest in their health and in PD, not only will the right therapeutic decisions be made for the individual, but also the very act of involving the patient could have an immense impact on their QoL.
Assessing Quality of Life in the Future What changes can be made in assessing QoL in PD that reflect the issues raised here? How can the concepts of ‘being’, ‘belonging’ and ‘becoming’ be introduced in the measurement of QoL in clinical trials? It may be useful to move away from the physician’s perception of the patient’s QoL to actual changes in QoL, and this can be achieved by involving four individuals (or groups of individuals):
• the patient; • •
the spouse or partner of the patient; the PD specialist nurse or research nurse; and • the neurologist.
An amalgamation of the perception from these four people/groups may give a more rounded, and consequently a more accurate measure, of QoL. Such an approach may be more consistently accurate than having to rely on the more limited scope and characteristics of the current rating scales.
The spouse or partner plays a particularly important role in observing symptoms and behaviour that healthcare professionals and even the patient are unaware of. This may be particularly true of some non-motor symptoms of PD. Furthermore, the QoL of the partner and other family members should be considered in management decisions and in the development of new pharmacological agents.
All the points raised in this article about patient perspectives of QoL do, of course, have to be balanced with the real benefits of using clinical assessment of QoL when the cost–benefits of different treatments for different conditions are being compared. Such comparisons are needed when considering the impact of diseases and treatments at the level of the whole society, and individuals’ needs cannot be the primary consideration. However, at the same time, everyday management decisions must have more focus on the patient’s perception of their own QoL and on the factors that affect their QoL – and the only way to make the healthcare teams aware of such factors is by open and honest communication between the patient and the team. n
patient education and health-related quality of life in patients with Parkinson’s disease, Qual Life Res, 2004;13:81–9.
3. Grosset KA, Grosset DG, Patient-perceived involvement and satisfaction in Parkinson’s disease: effect on therapy decisions and quality of life, Mov Disord, 2005;20:616–9.
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