• 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.

    Trial Design

    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.

    Outcome Measures

    • 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

    Trial Logistics

    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.



    The result of this research was published in the European Thyroid Journal in August, 2020 (https://www.karger.com/Article/Abstract/509227)


    Background: Medullary thyroid cancer (MTC) is a neuroendocrine tumour and a rare variant of thyroid cancer with different aetiology, presentation and treatment to differentiated thyroid cancer. Currently available thyroid cancer-specific quality of life (QoL) tools focus on issues and treatments more relevant to patients with differentiated thyroid cancer and therefore may not address issues specific to a MTC diagnosis and cancer journey. Method: This prospective multicentre randomised study involved 204 MTC patients completing four quality of life questionnaires (QOLQ) and stating their most and least preferred. The questionnaires were a general instrument, the EORTC QLQ-C30, two disease-specific tools, the MD Anderson Symptom Inventory (MDASI) thyroid module and the City of Hope Quality of Life Scale/THYROID (amended) and the neuroendocrine questionnaire, EORTC QLQ-GINET21. Patients were randomised to complete the four questionnaires in one of 24 possible orders and then answered questions about which tool they preferred. The primary outcome measure was patients’ preferred QoL instrument for describing their concerns and for facilitating communication with their healthcare professional. Secondary analyses looked at differences between preferred QOLQs amongst patient subgroups (WHO performance status [0 and 1+], disease stage: early [T1–3, N0 or N1A], metastatic [T4, any T N1b] and advanced [any T any N M1], and type of MTC [sporadic and inherited]), identification of MTC patients’ least preferred questionnaire and clinicians’ views on the QoL tools in terms of their ability to highlight problems not otherwise ascertained by a standard clinical review. Results: No evidence of a difference was observed for most preferred QOLQ (p = 0.650). There was however evidence of a difference in least preferred questionnaire in the cohort of 128 patients who stated their least preferred questionnaire (p = 0.042), with 36% (46/128) of patients choosing the EORTC QLQ-GI.NET21 questionnaire. Subgroup analyses showed that there was no evidence of a difference in patients’ most preferred questionnaire in sporadic MTC patients (p = 0.637), patients with WHO PS 0 or 1+ (p = 0.844 and p = 0.423) nor when comparing patients with early, advanced local or metastatic disease (p = 0.132, p = 0.463 and p = 0.506, respectively). Similarly, subgroup analyses on patients’ least preferred questionnaires showed no evidence of differences in sporadic MTC patients (p = 0.092), patients with WHO PS 0 or 1+ (p = 0.423 and p = 0.276), nor in early or metastatic disease patients (p = 0.682 and p = 0.345, respectively). There was however some evidence to suggest a difference in least preferred questionnaire in patients with advanced local stage disease (p = 0.059), with 43% (16/37) of these patients choosing the EORTC QLQ-GI.NET21 questionnaire. Conclusions: MTC patients regardless of their performance status, disease aetiology and disease burden did not express a preference for any one particular questionnaire suggesting any of the tools studied could be utilized in this patient cohort. The least preferred questionnaire being a gastrointestinal NET specific tool suggests that diarrhoea was not a significant symptom and concern for the population studied.

    © 2020 European Thyroid Association Published by S. Karger AG, Basel

  • About Laura

  • 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.”