Surveys

 2014 Quality of life issues for people living with CLL

 

CLLSA QoL full data summary with graphs and key points - link to PDF

Survey of 282 CLLSA members

 

Executive summary


The Chronic Lymphocytic Leukaemia Support Association (CLLSA) has long been aware of the quality of life issues experienced by those living with chronic lymphocytic leukaemia (CLL). However, there has been limited data collection to explore the true extent of its impact. In order to find out more about the quality of life issues for those living with CLL, data were collected from 282 CLLSA members living with CLL who answered an online survey between January and December 2013. Respondents were asked to answer four open questions, which included the amount of time they have been living with CLL, the impact CLL has had on their quality of life before they initiated treatment (also referred to as the ‘watch and wait’ period), the treatment they have received (if any at all) and the impact CLL has had on their quality of life post-treatment (if relevant). Results from this survey suggests that for both ‘watch and wait’ patients, as well and those who have received treatment, physical problems were the most reported quality of life issue, followed by emotional issues. Specifically, for those in the ‘watch and wait’ stage of their CLL, fatigue and tiredness were the most reported issues along with anxiety for the future. In the post-treatment group, infections and immune system issues were most reported. In order to gain a deeper understanding of quality of life issues among those with CLL, a follow-up survey is recommended.

 

Introduction


Quality of life is an important measure of disease progression and impact. The World Health Organisation Quality of Life (WHOQOL, 1997) measure suggests that quality of life can be broken down into 6 areas: physical health, emotional/psychological wellbeing, independence (including financial security and work capacity), relationships, environmental issues (including leisure activities) and personal beliefs. Living with a condition such as CLL can have a serious impact on these areas; therefore the clinical research community felt that more research was needed into how CLL affects quality of life. The CLLSA reached out to its members to participate in a survey to explore quality of life issues in ‘watch and wait’ patients and those who have received treatment.

 

Method


Data were collected from 282 CLLSA members who answered an online survey between January and December 2013 around quality of life issues in CLL. Respondents were asked four questions and had the opportunity to respond in free text, the questions were:

1.    How long have you been diagnosed with CLL?

2.    If you are still in ‘watch and wait’, what have been the key issue(s) that have most affected your quality of life?

3.    If you have had treatment, please indicate the nature of the treatment

4.    Post-treatment, what have been the issues that have most affected your quality of life?

 

In order to quantitatively analyse the feedback from the participants, answers were categorised depending on whether respondents reported being in ‘watch and wait’ or whether they had received treatment. Furthermore, quality of life issues were broken down into five areas for further analysis: physical issues, emotional issues, security issues, fun and social life issues and relationship issues. Beyond that, the responses were broken down into specific impacts. For example, within physical issues, fatigue, infections, night sweats etc were logged. The breakdowns were based on keywords within the answer

Read full PDF summary report

 

Survey  Snapshot

 

What was the main aim of the quality of life survey?

·         The aim of CLLSA’s quality of life survey was to explore and understand the quality of life issues faced by those living with CLL in order to outline recommendations for future research and improved care management

 

How many people completed the survey?

·         A total of 282 CLLSA members completed the quality of life survey between January and December 2013

 

What questions were included in the survey?

·         The survey consisted for four free-text box questions:

1.    How long have you been diagnosed with CLL?

2.    If you are still in ‘watch and wait’, what have been the key issue(s) that have most affected your quality of life?

3.    If you have had treatment, please indicate the nature of the treatment

4.    Post-treatment, what have been the issues that have most affected your quality of life?

 

How were the answers analysed?

·         In order to quantitatively analyse the feedback from the participants, answers were categorised depending on whether respondents reported being in ‘watch and wait’ or whether they had received treatment

·         Answers relating to quality of life issues were further categorised into five areas:

o   Physical issues: infections, fatigue, exercise, swelling, sweats, aching bones etc

o   Emotional wellbeing: anxiety, concern, stress, self-esteem, helplessness etc

o   Issues around security: Money, work, planning for the future, insurance etc

o   Fun/social issues: social life, hobbies, holidays etc

o   Relationship issues: friends, family, isolation, support etc

 

What was the average length of time respondents had lived with CLL?

·         The length of time that respondents reported living with CLL ranged from 1.5 months to 288 months (24 years)

·         ‘Watch and wait’: the average time living with CLL was 58.17 months (4.8 years)

·         Post-treatment: the average time living with CLL was 90.43 months (7.5 years)

 

What were the main quality of life issue for those in ‘watch and wait’?

·         148 respondents answered the question relating to quality of life issues during ‘watch and wait’.

o   107 people mentioned physical problems affecting their quality of life

o   68 people mentioned emotional issues

o   Security, relationship and fun issues were less frequently reported

·         Fatigue and tiredness were the most reported physical issues among ‘watch and wait’ respondents

·         Anxiety was the most reported emotional issue

 

What were the main quality of life issues for those who had received treatment?

·         109 respondents answered the question relating to quality of life issues post-treatment

o   76 people mentioned physical problems affecting their quality of life

o   Emotional issues were less frequently reported, as were issues to do with security, relationships and fun

·         For those post-treatment, the most commonly reported physical issue was infections, which was reported by 37 respondents. This was closely followed by fatigue/tiredness, which was reported by 36 respondents

 

What were the conclusions from the survey?

·         Overall, physical issues were the most reported quality of life issues across both ‘watch and wait’ patients and post-treatment patients

·         Fatigue/tiredness was the most reported physical issue in ‘watch and wait’ patients, however, infections was the most commonly reported physical issue post-treatment

·         The incidence of emotional quality of life issues was high among the ‘watch and wait’ group (85% of respondents stated experiencing anxiety, concern or uncertainty about living with CLL) but this was lower in the post-treatment group (57% of respondents reported experiencing anxiety, concern or uncertainty about living with CLL)

·         Issues around security, fun/social life and relationships were less frequently reported in both ‘watch and wait’, as well as post-treatment patients

 

What were the recommendations from the survey?

·         Education on the disease progression of CLL

o   For ‘watch and wait’  patients, education on symptom progression and monitoring will be important

o   For post-treatment patients, education on monitoring side effects will be important

·         Advice on managing fatigue and tiredness

o   Fatigue and tiredness were an issue for ‘watch and wait’ patients, as well as those post-treatment. This suggests it would be beneficial to ensure advice is available on how to manage this

·         Research into new treatments

o   Infections and immune system issues increased post-treatment. Therefore research into treatments for those who have already incurred immune system problems is needed for CLL patients

·         Holistic treatment

o   The incidence of quality of life issues suggest that patients would benefit from being treated in a holistic manner, in which their care is managed by a multidisciplinary team. This would ensure that physical issues, such as infections and emotional issues, such as anxiety, would be managed by the most suitable healthcare professional

·         Conducting a follow-up survey

o   It is recommended that future surveys should further explore the physical and emotional impact of living with CLL, particularly what support and advice people living with CLL have received

o   A good understanding of what support to offer patients and at what stage of the disease may help towards addressing the anxiety and concern ‘watch and wait’ patients experience whilst living with CLL, as well as offering guidance and support to those who need practical advice on dealing with the side-effects of the disease or treatments currently available

o   Furthermore, a follow-up survey would allow a deeper analysis of the issues related to security, relationships and social life/fun, in order to find out how CLL affects quality of life beyond the physical issues

 

 

CLLSA QoL full data summary with graphs and key points - link to PDF