As health practitioners we can add to the Quality of Life (QoL) of our patients firstly by asking the right questions, secondly by listening and thirdly, by intervening with the patient’s wishes foremost in our minds.
The World Health Organization defines QoL as “individuals’ perceptions of their position in life in the context of the culture and value system in which they live, and in relation to their goals, expectations, standards and concerns.” QoL embodies overall well-being and happiness, including access to school, work opportunities, absence of military conflict or threats, as well as good physical and emotional health. It’s relative, subjective and has intangible components, such as spiritual beliefs and a sense of belonging.
A number of questionnaires/studies have been developed to measure QoL in patients with lymphoedema. Articles such as the following shed insight into the poor information provided to patients and a general lack of understanding of lymphoedema by health professionals.
Health-related quality of life with lymphoedema: a review of the literature.
This article reviews qualitative and quantitative studies that evaluate health-related quality of life (HRQoL) in lymphoedema. Qualitative studies reveal a number of factors that can affect HRQoL. These include a lack of understanding of lymphoedema by health professionals and poor information provided to patients. Emotional responses include shock, fear, annoyance, frustration and negative body image. Treatment can be costly in terms of time and disruption to lifestyle. Quantitative studies show that patients with lymphoedema experience greater levels of functional impairment, poorer psychological adjustment, anxiety and depression than the general population. Increased limb volume is poorly related to the impact of lymphoedema on the patient. Factors leading to deficits in quality of life include the frequency of acute inflammatory episodes, the presence of pain, skin quality, lymphoedema in the dominant hand and reduced limb mobility. There is some evidence that the adoption of patient-centred guidelines can improve quality of life in patients with breast-cancer-related lymphoedema. HRQoL is an important outcome in the management of patients with lymphoedema. Further studies must examine how lymphoedema impacts on patients other than those with breast-cancer-related lymphoedema and the consequences to patients of different approaches to care.
So how do we aim to improve the QoL of our patients? ASK questions such as: “How can I best help you”? LISTEN to the answer which may be as simple as the patient being tired of trying to put on compression socks everyday and instead would prefer to wear an item such as an Mobiderm autofit sock which has Velcro tabs and is easier for the patient to wear. HELP have the patient’s wishes foremost in your mind. Give them the best information you can and then help them with all the tools you have available.