The Evaluation of Health-Related Quality of Life Issues Experienced by Patients with Desmoid-Type Fibromatosis (The QUALIFIED Study)—A Protocol for an International Cohort Study

Schut, Anne-Rose W.; Timbergen, Milea J M; Lidington, Emma; Grünhagen, Dirk J.; Graaf, Winette T.A. van der; Sleijfer, Stefan; Houdt, Winan J. van; Bonenkamp, Johannes J.; Younger, Eugenie; Dunlop, Alison; Jones, Robin L.; Verhoef, Cornelis; Gennatas, Spyridon; Husson, Olga

doi:10.3390/cancers13133068

Cited by 12 publications

(28 citation statements)

References 33 publications

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“…Related studies have shown that the EORTC QLQ-C30 has good reliability and validity for evaluating the quality of life of patients with cancer. 14 The EORTC QLQ-C30 score is calculated on a scale of 1–4. Here, we followed the EORTC scoring manual.…”

Section: Methodsmentioning

confidence: 99%

Progression-Free Survival of a Patient with Advanced Hepatocellular Carcinoma Treated with Adoptive Cell Therapy Using Natural Killer Cells: A Case Report

Hong¹,

Xie²,

Guo³

et al. 2022

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Adoptive cell therapy (ACT) is a promising treatment that is considered safe and efficient. Natural killer (NK) cells play an important role in the innate immune system and destroy target cells such as tumor cells without prior sensitization. Here, we report a 59-year-old man with advanced diffuse hepatocellular carcinoma (HCC) who underwent 17 courses of NK cell treatment from March 2017 to July 2018. Although he presented with progressive disease, his hydrothorax and ascites decreased, and his state of mind, appetite and quality of life were markedly improved after treatment versus at admission. To date, his survival time is >48 months. Here, we provide evidence that NK cell adoptive therapy has no adverse effects, enhances immune function, and improves the quality of life of patients with HCC.

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Section: Methodsmentioning

confidence: 99%

Progression-Free Survival of a Patient with Advanced Hepatocellular Carcinoma Treated with Adoptive Cell Therapy Using Natural Killer Cells: A Case Report

Hong¹,

Xie²,

Guo³

et al. 2022

OTT

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“…The development consisted of three distinct phases. Phase I and II have been conducted previously, and are described in detail elsewhere [16,24]. The provisional DTFspecific HRQoL questionnaire, the DTF-QoL, was pre-tested in a sample of DTF patients to test construct validity and reliability.…”

Section: Questionnaire Developmentmentioning

confidence: 99%

“…The sample included 236 patients (United Kingdom (UK): n = 80; Netherlands (NL): n = 156) who participated in the QUALIFIED study (The evaluation of health-related quality of life issues experienced by patients with desmoid-type fibromatosis; registered at clinicaltrials.gov (accessed on 1 July 2021): NCT04289077) [24]. The QUALIFIED study is an international, multicentre, cross-sectional, observational cohort study among adult (≥18 years) patients with sporadic DTF who were treated in one of the participating centres (one centre in the UK; three centres in the NL).…”

Section: Study Sample and Data Collectionmentioning

confidence: 99%

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Development of a Disease-Specific Health-Related Quality of Life Questionnaire (DTF-QoL) for Patients with Desmoid-Type Fibromatosis

Schut

Lidington

Timbergen

et al. 2022

Cancers

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Sporadic desmoid-type fibromatosis (DTF) is a rare, non-metastasising soft-tissue tumour. Patients can experience a variety of disease-specific issues related to the unpredictable clinical course and aggressiveness of DTF, which negatively impacts health-related quality of life (HRQoL). These DTF-specific issues are not captured by generic HRQoL tools. A 102-item provisional DTF-specific HRQoL tool, the DTF-QoL, was previously developed. The aim of this study was to pre-test the psychometric properties of the DTF-QoL by administering it together with the EORTC Quality of Life Questionnaire Core 30 (EORTC QLQ-C30) to 236 DTF patients from the United Kingdom and the Netherlands. Construct validity and reliability were determined based on factor analysis, multi-trait scaling analysis, Cronbach’s alpha, and correlations with the EORTC QLQ-C30 scales. Ninety-six items were selected, conceptualised into three symptom scales, eleven disease-impact scales and six single items, together forming the final DTF-QoL. Scaling assumptions were fully or moderately met for ten out of fourteen scales. Cronbach’s alpha ranged from 0.551–0.908. Most scales of the DTF-QoL were weakly or moderately correlated with the EORTC QLQ-C30. The DTF-QoL is a promising tool capturing the whole spectrum of DTF-specific issues. Implementation of the DTF-QoL in research and clinical practice will help to personalise HRQoL measurement and clinical care for DTF patients.

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“…These DTF-specific HRQoL issues are not captured by generic or cancer-generic HRQoL questionnaires, such as the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC QLQ-C30), which are predominantly used in DTF studies and in clinical care [ 17 ]. Therefore, a DTF-specific HRQoL questionnaire, the DTF-QoL, was recently developed by our group, which can be used to evaluate the prevalence of HRQoL issues in DTF patients [ 18 , 19 ]. Furthermore, the small number of previous studies focused on the population of DTF patients as a whole because of small sample sizes.…”

Section: Introductionmentioning

confidence: 99%

Unraveling Desmoid-Type Fibromatosis-Specific Health-Related Quality of Life: Who Is at Risk for Poor Outcomes

Schut

Lidington

Timbergen

et al. 2022

Cancers

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Desmoid-type fibromatosis (DTF) is a rare, soft-tissue tumour. These tumours do not metastasize, but their local aggressive tumour growth and unpredictable behaviour can have a significant impact on health-related quality of life (HRQoL). Little is known about which DTF patients are particularly affected by an impaired HRQoL. The objectives of this study were to assess HRQoL among different groups of DTF patients and to investigate which socio-demographic and clinical characteristics were associated with DTF-specific HRQoL. A cross-sectional study was conducted among DTF patients from the United Kingdom and the Netherlands. HRQoL was assessed using the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC QLQ-C30), accompanied by the DTF-QoL to assess DTF-specific HRQoL. The scores were compared amongst subgroups, based on the socio-demographic and clinical characteristics of DTF patients. Multiple linear regression analyses with a backward elimination were conducted to identify the factors associated with DTF-specific HRQoL. A total of 235 DTF patients completed the questionnaires. Female patients, patients with more than two comorbidities, or patients who received treatment other than only active surveillance (AS) or surgery scored significantly worse on the subscales of both the EORTC QLQ-C30 and DTF-QoL. Patients that were ≥ 40 years scored significantly worse on the physical functioning scale of the EORTC QLQ-C30, while younger patients (18–39 years) scored significantly worse on several DTF-QoL subscales. Differences in the DTF-QoL subscales were found for tumour location, time since diagnosis and the presence of recurrent disease. Furthermore, treatments other than AS or surgery only, female sex, younger age and the presence of comorbidities were most frequently associated with worse scores on the DTF-QoL subscales. This study showed that (DTF-specific) HRQoL differs between groups of DTF patients. Awareness of these HRQoL differences could help to provide better, personalised care that is tailored to the needs of a specific subgroup.

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The Evaluation of Health-Related Quality of Life Issues Experienced by Patients with Desmoid-Type Fibromatosis (The QUALIFIED Study)—A Protocol for an International Cohort Study

Cited by 12 publications

References 33 publications

Progression-Free Survival of a Patient with Advanced Hepatocellular Carcinoma Treated with Adoptive Cell Therapy Using Natural Killer Cells: A Case Report

Progression-Free Survival of a Patient with Advanced Hepatocellular Carcinoma Treated with Adoptive Cell Therapy Using Natural Killer Cells: A Case Report

Development of a Disease-Specific Health-Related Quality of Life Questionnaire (DTF-QoL) for Patients with Desmoid-Type Fibromatosis

Unraveling Desmoid-Type Fibromatosis-Specific Health-Related Quality of Life: Who Is at Risk for Poor Outcomes

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