QaLM: Assessing Quality of Life in MTC Patients
Dr Laura Moss (Cardiff)
Medullary thyroid cancer (MTC) presents as a sporadic tumour in approximately 75% of cases and as an inherited disease in 25%. The inherited forms of MTC constitute part of the Multiple Endocrine Neoplasia disorders. Patients with Multiple Endocrine Neoplasia (MEN) may therefore have a number of medical conditions which can impact on their quality of life. It can be difficult to fully appreciate the impact of a cancer diagnosis or an inherited syndrome, raised and rising tumour markers and disease symptoms on a patient’s quality of life. There are limited opportunities for patients with rare cancers to participate in research. This study is open to medullary thyroid cancer patients at any time point in their cancer journey and will allow us to assess the impact of symptoms at different stages and allow us to compare the results between patients who have the inherited form and the sporadic (non inherited) form of MTC. The results from the QaLM study may help us collect more robust quality of life data in future clinical trials which in turn may help clinicians and commissioners assess the potential impact of new treatments.
The aim of the study is to determine which Health Related Quality of Life (HRQoL) instruments patients with sporadic and inherited medullary thyroid cancer and early and advanced stage medullary thyroid cancer find most helpful in facilitating communication of their health problems to their clinicians. The study will attempt to ascertain if medullary thyroid cancer patients’ symptoms and quality of life is better assessed by a thyroid cancer specific questionnaire, a general symptom questionnaire or a neuroendocrine tumour specific questionnaire.
The study will also ascertain clinician’s views on the quality of life tools in terms of their ability to highlight problems not otherwise ascertained by a standard clinical review appointment along with the relationship between quality of life tool score, performance status and clinical significance.
Patients will be randomised to complete four quality of life questionnaires in different sequences and then will be asked questions about which questionnaire they prefer in a final brief questionnaire.
Eligibility: 200 patients required
Patients 16 years old or over who have a diagnosis of medullary thyroid cancer (inherited or sporadic)
Patients can be included at any time point after diagnosis.
- Identification of medullary thyroid cancer patients’ preferred quality of life instrument for describing their concerns and for facilitating communication with their health care professional.
- Assess if there are differences between preferred quality of life tools amongst patients with sporadic and inherited forms of MTC.
- Assess for any emerging patterns between questionnaire responses and a patient’s clinical situation.
- Assess clinicians’ views on the quality of life tools in terms of their ability to highlight problems not otherwise ascertained by a standard clinical review appointment
A number of clinicians across the UK have expressed interest in taking part and we are currently in the process of trying to open the study in 21 centres.
If you would like to know more you can contact Dr Laura Moss, Chief Investigator, Consultant Clinical Oncologist at Velindre Cancer Centre, Cardiff via email.
Dr Laura Moss
Dr Laura Moss is a consultant clinical oncologist specialising in the treatment of patients with thyroid cancer. She qualified from the University of Wales, College of Medicine in 1993 and undertook her Specialist Registrar training in oncology on the South Wales training scheme from 1996. She became a consultant at Velindre Cancer Centre, Cardiff in 2002.
Laura founded Thyroid Cancer Forum-UK in 2005 which currently has ~250 consultant members. She is the current NCRI Thyroid Cancer Subgroup Chair, an EORTC Endocrine Cancer Task Force and International Thyroid Oncology Group member and Honorary President of Thyroid Cancer Support Group Wales.
She has a particular interest in anaplastic thyroid cancer and launched the National Anaplastic Thyroid Cancer Tissue Bank and Database (NATT) project in 2013.
Laura commented; “I was delighted to hear the news that ‘AMEND’ were granting me the funding to be able to undertake my study (QaLM) the usefulness of quality of life tools for medullary thyroid cancer (MTC) patients. This is an area I have been interested in for several years so to be able to take the project forward and launch it in multiple UK cancer centres is very exciting.”