Hodgkin Lymphoma Survivorship Questionnaire Study
Research type
Research Study
Full title
Hodgkin Lymphoma Survivorship Questionnaire Study
IRAS ID
221729
Contact name
David Cunningham
Contact email
Sponsor organisation
The Institute of Cancer Research
Clinicaltrials.gov Identifier
N/A, N/A
Duration of Study in the UK
1 years, 7 months, 30 days
Research summary
Research Summary
This study proposes to investigate a range of less well reported nonfatal but clinically significant co-morbidities which develop in female Hodgkin Lymphoma (HL) survivors treated in childhood and young adulthood.
Hodgkin Lymphoma is one of the most common malignancies in young adults and has seen significant improvement in survival over recent decades resulting in an increasing cohort of long term HL survivors. However high dose and combination chemotherapy and radiotherapy treatments used to achieve long term survival are known to be highly toxic to patients.
Young women treated for HL represent the epitome of the issues faced by long-term cancer survivors as not only were they amongst the first to be treated with high risk treatments but they are also at risk of gender-specific outcomes such as premature menopause.
Increased mortality is seen in these patients many decades following treatment, particularly due to second malignancies and cardiovascular disease but much less is known about the burden and range of nonfatal co-morbidities female survivors develop. The few studies investigating the full range of co-morbidities have largely been undertaken in those treated in childhood for a range of childhood cancers and with older higher risk treatments before widespread de-intensification of treatment was adopted.
There is therefore a clinical and scientific need to answer questions addressed by this study which aims to better elucidate less well reported but clinically significant co-morbidities that patients treated in childhood and adulthood and those treated more recently have developed. By analysing the risk of developing different late effects in relation to risk factors such as age at treatment, treatment type and lifestyle factors, this will contribute to the development of risk profiles to help inform treatment decisions, follow up policy and lifestyle decisions in these survivors.
Summary of Results
This was a questionnaire study undertaken at the Royal Marsden NHS Foundation Trust of women treated for Hodgkin Lymphoma between the years 1970-2015. The aim of this study was to find out more about how treatments for Hodgkin Lymphoma (HL) affect the long-term health of women aged 45 years and under with a focus on certain conditions that more commonly affect women than men. A total of 237 women took part. They answered a one-off paper questionnaire about lifestyle as well as questions about a range of medical problems which may be linked to the treatments they received for Hodgkin Lymphoma.
Our first published analyses have focussed on thyroid disorders. Thyroid disorders can cause serious ill effects and reduce quality of life but are often very treatable. Signs and symptoms can be subtle and if not actively looked for a diagnosis may be missed. It is important to be able to measure the significance of these disorders and how frequently they impact those treated for HL in the long-term in order to best manage them. From the answers given in the questionnaire about abnormalities of the thyroid our analysis investigated how frequently thyroid disorders occur in these women in relation to the treatment they received.
Just over one third of these women (33.8%) reported suffering from a thyroid disorder at some point since their treatment. The most commonly occurring thyroid disorders reported were underactive thyroid glands, thyroid nodules or cysts, and overactive thyroid glands. Women who had been treated with radiotherapy as part of their treatment had approximately 5-times higher risk of developing a thyroid disorder compared with women who had not received any radiotherapy and the risk increased with increasing dose of radiotherapy (by approximately 3% with every additional 1Gy of radiotherapy received). The risk of developing an underactive thyroid was greatest within 4 years of finishing treatment, although a thyroid disorder could still develop many years later (our follow up included those treated nearly 50 years ago). There was no association seen between any chemotherapy drug given and increased risk of thyroid disorder.
Overall, the number of women affected by thyroid disorders was higher than we would expect compared with women in the general population of about the same age, which is associated with the use of radiotherapy. The use of radiotherapy, including the dose and the size of the area on the body treated for HL has significantly reduced over the time period from 1970-2015 (on average 38Gy in the 1960s and 1970s to <10Gy in 2010 onwards). The medical community has adjusted and improved treatments as they have learned about such side effects in research studies such as these over recent decades. More sophisticated radiotherapy techniques including CT planning, shielding and more accurate delivery methods have also been introduced and improved treatments markedly since 1970. Therefore the risks of thyroid disorders are likely to be significantly lower for those more recently treated. However, the results of this study have emphasised the importance of physicians being aware of thyroid disorders occurring more frequently after the use of radiotherapy treatment, which can occur many decades after treatment, to be able to actively treat these conditions promptly. Screening for thyroid disorders has become a fundamental part of HL follow up guidance nationally and internationally, including at the Royal Marsden Hospital.
This study also collected information on several other medical problems and results are in the process of being analysed. We aim to publish all results in open access peer-reviewed academic journals and updates will be sent to participants at their request.REC name
North West - Greater Manchester West Research Ethics Committee
REC reference
17/NW/0356
Date of REC Opinion
13 Jul 2017
REC opinion
Further Information Favourable Opinion