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      Medullary Thyroid Cancer Patient’s Assessment of Quality of Life Tools: Results from the QaLM Study

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          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.

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          Most cited references 6

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          A National Cancer Data Base report on 53,856 cases of thyroid carcinoma treated in the U.S., 1985-1995 [see commetns].

          The National Cancer Data Base (NCDB) represents a national electronic registry system now capturing nearly 60% of incident cancers in the U. S. In combination with other Commission on Cancer programs, the NCDB offers a working example of voluntary, accurate, cost-effective "outcomes management" on a both a local and national scale. In addition, it is of particular value in capturing clinical information concerning rare cancers, such as those of the thyroid. For the accession years 1985-1995, NCDB captured demographic, patterns-of-care, stage, treatment, and outcome information for a convenience sample of 53,856 thyroid carcinoma cases (1% of total NCDB cases). This article focuses on overall 10-year relative survival and American Joint Committee on Cancer (AJCC) (3rd/4th edition) stage-stratified 5-year relative survival for each histologic type of thyroid carcinoma. Care patterns also are discussed. The 10-year overall relative survival rates for U. S. patients with papillary, follicular, Hürthle cell, medullary, and undifferentiated/anaplastic carcinoma was 93%, 85%, 76%, 75%, and 14%, respectively. For papillary and follicular neoplasms, current AJCC staging failed to discriminate between patients with Stage I and II disease at 5 years. Total thyroidectomy +/- lymph node sampling/dissection represented the dominant method of surgical treatment rendered to patients with papillary and follicular neoplasms. Approximately 38% of such patients receive adjuvant iodine-131 ablation/therapy. At 5 years, variation in surgical treatment (i.e., lobectomy vs. more extensive surgery) failed to translate into compelling differences in survival for any subgroup with papillary or follicular carcinoma, but longer follow-up is required to evaluate this. NCDB data appeared to validate the AMES prognostic system, as applied to papillary cases. Younger age appeared to influence prognosis favorably for all thyroid neoplasms, including medullary and undifferentiated/anaplastic carcinoma. NCDB data also revealed that unusual patients diagnosed with undifferentiated/anaplastic carcinoma before age of 45 years have better survival. The NCDB system permits analysis of care patterns and survival for large numbers of contemporaneous U. S. patients with relatively rare neoplasms, such as thyroid carcinoma. In this context, it represents an unsurpassed clinical tool for analyzing care, evaluating prognostic models, generating new hypotheses, and overcoming the volume-related drawbacks inherent in the study of such neoplasms. [See editorial on pages 2434-6, this issue.]
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            The European Organization for Research and Treatment of Cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology.

            In 1986, the European Organization for Research and Treatment of Cancer (EORTC) initiated a research program to develop an integrated, modular approach for evaluating the quality of life of patients participating in international clinical trials. We report here the results of an international field study of the practicality, reliability, and validity of the EORTC QLQ-C30, the current core questionnaire. The QLQ-C30 incorporates nine multi-item scales: five functional scales (physical, role, cognitive, emotional, and social); three symptom scales (fatigue, pain, and nausea and vomiting); and a global health and quality-of-life scale. Several single-item symptom measures are also included. The questionnaire was administered before treatment and once during treatment to 305 patients with nonresectable lung cancer from centers in 13 countries. Clinical variables assessed included disease stage, weight loss, performance status, and treatment toxicity. The average time required to complete the questionnaire was approximately 11 minutes, and most patients required no assistance. The data supported the hypothesized scale structure of the questionnaire with the exception of role functioning (work and household activities), which was also the only multi-item scale that failed to meet the minimal standards for reliability (Cronbach's alpha coefficient > or = .70) either before or during treatment. Validity was shown by three findings. First, while all interscale correlations were statistically significant, the correlation was moderate, indicating that the scales were assessing distinct components of the quality-of-life construct. Second, most of the functional and symptom measures discriminated clearly between patients differing in clinical status as defined by the Eastern Cooperative Oncology Group performance status scale, weight loss, and treatment toxicity. Third, there were statistically significant changes, in the expected direction, in physical and role functioning, global quality of life, fatigue, and nausea and vomiting, for patients whose performance status had improved or worsened during treatment. The reliability and validity of the questionnaire were highly consistent across the three language-cultural groups studied: patients from English-speaking countries, Northern Europe, and Southern Europe. These results support the EORTC QLQ-C30 as a reliable and valid measure of the quality of life of cancer patients in multicultural clinical research settings. Work is ongoing to examine the performance of the questionnaire among more heterogenous patient samples and in phase II and phase III clinical trials.
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              Measurement of the quality of life in cancer survivors.

              A QOL instrument was developed to measure the specific concerns of long term cancer survivors. The QOL-CS is based on previous versions of the QOL instrument developed by researchers at the City of Hope National Medical Centre (Grant, Padilla, and Ferrell). This instrument was revised over a one year pilot by Hassey-Dow and Ferrell. The revised instrument included 41 items representing the four domains of quality of life incorporating physical, psychological, social, and spiritual well being. The present study was conducted as a mail survey to the membership (n = 1,200) of the National Coalition for Cancer Survivorship with 686 subjects responding to the survey. This survey included a Demographic tool, QOL-CS and the FACT-G tool developed by Cella. Psychometric analysis, performed on 686 respondents, included measures of reliability and validity. Two measures of reliability included test-retest and internal consistency. The overall QOL-CS tool test-retest reliability was 0.89 with subscales of Physical r = 0.88, Psychological r = 0.88, Social r = 0.81, and Spiritual, r = 0.90. The second measure of reliability was computation of internal consistency using Cronbach's alpha coefficient as a measure of agreement between items and subscales. Analysis revealed an overall r = 0.93. Subscale alphas average ranged from r = 0.71 for spiritual well being, r = 0.77 for physical, r = 0.81 for social, and r = 0.89 for psychological. Several measures of validity were used to determine the extent to which the instrument measured the concept of QOL in cancer survivors. The first method of content validity was based on a panel of QOL researchers and nurses with expertise in oncology. The second measure used stepwise multiple regression to determine factors most predictive of overall QOL in cancer survivors. Seventeen variables were found to be statistically significant accounting for 91% of the variance in overall QOL. The fourth measure of validity used Pearson's correlations to estimate the relationships between the subscales of QOL-CS and the subscales of the established FACT-G tool. There was moderate to strong correlation between associated subscales including QOL-CS physical to FACT physical (r = 0.74), QOL-CS Psych to FACT Emotional (r = 0.65), QOL Social to FACT Social (r = 0.44). The overall QOL-CS correlation with the FACT-G was 0.78. Additional measures of validity included correlations of individual items of the QOL-CS tool, factor analysis, and construct validity discriminating known groups of cancer survivors. Findings demonstrated that the QOL-CS and its subscales adequately measured QOL in this growing population of cancer survivors.

                Author and article information

                European Thyroid Journal
                S. Karger AG
                March 2021
                23 August 2020
                : 10
                : 1
                : 72-78
                aVelindre Cancer Centre, Velindre University NHS Trust, Cardiff, United Kingdom
                bCentre for Trials Research, Cardiff University, Cardiff, United Kingdom
                cWeston Park Cancer Centre, Sheffield, United Kingdom
                dThe Royal Marsden NHS Foundation Trust, London, United Kingdom
                eWestern General Hospital, Edinburgh, United Kingdom
                fBarts and the London School of Medicine and Dentistry, London, United Kingdom
                gImperial College Healthcare NHS Trust, London, United Kingdom
                hBeatson Oncology Centre, Glasgow, United Kingdom
                iCambridge University Hospitals NHS Foundation Trust, Cambridge, United Kingdom
                jUniversity Hospitals Coventry and Warwickshire NHS Trust, Coventry, United Kingdom
                kUniversity College Hospital NHS Foundation Trust, London, United Kingdom
                lEast Kent Hospitals University NHS Foundation Trust, Canterbury, United Kingdom
                Author notes
                *Laura Moss, Clinical Oncology Department, Velindre Cancer Centre, Velindre Road, Glamorgan, Cardiff CF14 2TL (UK), laura.moss@wales.nhs.uk
                509227 Eur Thyroid J 2021;10:72–78
                © 2020 European Thyroid Association Published by S. Karger AG, Basel

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                Page count
                Pages: 7
                Clinical Thyroidology / Research Article


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