CLLSA QUALITY OF LIFE SURVEY
This article is a synopsis of a more detailed report on quality of life based on feedback from 282 CLLSA members in response to a simple questionnaire that was circulated in January 2013. Members were asked about how their quality of life had been affected following diagnosis, whilst ‘watching and waiting’ and also post treatment.
A fuller report will be used to raise awareness of the issues faced by CLL patients at different stages of their illness and we hope it might result in improved quality in the care provided for patients. It will be made available for all members on the website in due course and will be developed as we gain more patient feedback in the future.
Thank you to the 282 members who completed the questionnaire. We intend to follow up the survey to ensure that the CLL patient voice is heard with the consequent impact on improved practice, support and research. Please ensure that you respond to all invitations to share your individual experiences in future to maximise the impact of our work.
Diagnosis of cancer is clearly devastating for anyone but when most people think that early diagnosis and rapid treatment is the best way of dealing with it, the “Watch and Wait” concept is difficult to come to terms with. Members have commented on the anxiety, bewilderment, fear of the unknown, loneliness and grieving they experience after they have been told that they have an ‘incurable disease’.
CLL is often an 'unseen' disease to begin with. Many cannot understand that they have a chronic illness whilst appearing to be fine. It is a real problem deciding whether to tell friends, family and employers, and patients have described the difficulty of trying to ensure that colleagues and friends understand the reality of CLL when appearances can be so deceptive.
“..being told you have a potentially life threatening illness, which is ‘nothing to worry about...’ and effectively ‘go away and we'll see if anything happens’...”.
“Psychological - initially everyone shocked and hugely supportive. Now I feel I'm an anti-climax and a fraud. Yet my numbers are creeping up and I know it's not going away.”
“Not easy under watch and wait - Huge psychological and emotional adjustment knowing you have cancer but aren’t going to be treated.”
There is no doubt that fatigue is a major factor affecting quality of life for members. This was the most common issue affecting members during watch and wait, and fatigue references are more frequent as an issue pre-treatment compared to post-treatment. Several words for fatigue were used in the survey (tired, tiredness, lethargy, no stamina, no energy). Fatigue, however, is not simply tiredness but an overall major reduction in one’s ability to function. This can range from relatively short periods to an inability to undertake any routine employment.
“Fatigue without a doubt...not massive but I miss having a spring in my step.”
“Fatigue. Mind boggling fatigue that destroys my motivation and will to do practically anything.”
“I tend to try to do everything I want despite feeling tired all the time. I then ‘pay’ for it with extreme fatigue which disrupts my life for up to several days.”
Other physical symptoms:
Members identified the range of symptoms normally associated with CLL which affect quality of life. The most common mentioned were: Poor sleep, impotence, skin disorders, asthma, ulcers, bone and joint pain, night sweats, mouth ulcers and bleeding gums, shingles, cold sores, congestion, sinusitis, and swollen spleen discomfort.
Many patients, particularly post treatment, said that their compromised immune system had affected their quality of life and had resulted in an increase in infections and allergies. A handful of members have regular immunoglobulin infusions but many did not mention this provision which suggests that the infusions are not universally prescribed to help with poor immunity.
“The Chemotherapy treatment which saved my life over three years ago, also triggered off several side effects.. Initially Bone Marrow damage led to a long period of blood transfusions until it recovered sufficiently, but I was left with a very low level of immunity and this has made me prone to both bacterial and viral infections both of which I regularly experience. Seven months ago I developed a very severe attack of Shingles, for which I was hospitalised and after a series of blackouts pneumonia was also identified. I am now coping with the dreaded nerve pain which follows the infectious period and am on a cocktail of pain control drugs which themselves can have weird side effects, so much so that there have been times when I have not been allowed to drive. My quality of life has been directly or indirectly affected by the treatment rather than the CLL itself, however I remain truly grateful for the Oncology treatment and care, without which I may well not be here and so the related inconveniences fall in to perspective.”
“The side effects do not seem to be considered serious because my blood levels are normal. However they have seriously affected my Quality of life. “
Whilst some members report few or manageable side effects, others say that their quality of life has been significantly affected by the side effects of treatment and associated prophylactic drugs and with the ongoing long term effects of both the disease and treatments. They also report what they regard as complacency in some clinicians in addressing the side effects because blood levels are normal.
Patient support organisations have advice and guidance on how to overcome these problems but there appears to be little research or study looking into the causes. Clinical trials report on level 3 toxicity and higher but little attention appears to be made of the effects of treatments at the lower grades which can be the source of ongoing poor quality of life. Also, prophylactic drugs used to reduce toxicity may well introduce their own issues.
In conclusion, patients suffer various psychological, emotional and physical side effects, some of which can be long term, that are usually considered peripheral to the main CLL and are not adequately addressed. There needs to be a wider remit for CLL studies and research to embrace the multidisciplinary aspect of issues affecting the quality of life of CLL patients.
If you wish to add to this debate or you wish to share your own personal experiences of how your quality of life has been affected, please email firstname.lastname@example.org.