Publications by authors named "Olga Husson"

124 Publications

Sex-differences in symptoms and functioning in >5000 cancer survivors: Results from the PROFILES registry.

Eur J Cancer 2021 Oct 16;156:24-34. Epub 2021 Aug 16.

Department of Research and Development, Netherlands Comprehensive Cancer Organisation (IKNL), Utrecht, the Netherlands; CoRPS - Center of Research on Psychological and Somatic Disorders, Department of Medical and Clinical Psychology, Tilburg University, Tilburg, the Netherlands; Division of Psychosocial Research and Epidemiology, Netherlands Cancer Institute, Amsterdam, the Netherlands. Electronic address:

Background: Previous reports highlight the greater number of side effects that women experience during cancer treatment, but little is known about sex differences in symptoms and functioning in long-term survivors.

Methods: We investigated sex differences in the prevalence of physical (EORTC QLQ-C30) and emotional symptoms (Hospital Anxiety and Depression Scale) and loss of functioning (EORTC QLQ-C30) in 5339 cancer survivors (55% males). General linear models were computed to assess the differences in symptoms and functioning between female and male cancer survivors and between survivors and an age-matched reference population.

Results: The direct comparison between female and male cancer survivors identified more symptoms, such as nausea and vomiting (M = 5.0 versus. 3.2), insomnia (M = 26.1 versus. 15.9), anxiety (M = 5.2 versus. 4.2), and lower physical (M = 77.5 versus. 82.5) and emotional functioning (M = 83.4 versus. 86.3), in female survivors. However, comparison with an age-matched reference population demonstrated that several symptoms, such as fatigue, dyspnea, anxiety and depression, appeared to be more frequent in male patients. The investigation of functioning domains - compared with a reference population - highlighted further sex-specific differences. Female survivors experienced a moderate net loss in physical and cognitive functioning (-6.1 [95% CI = -8.1; -4,1] and -5.2 respectively [95% CI = -7; -3.5]), whereas male survivors displayed a significant net loss in role and social functioning compared to the reference population (-9.9 [95% CI = -11.2; -8.6] and -7.7 [95% CI = -9.6; -7.6] respectively).

Conclusion: To adequately capture sex differences in symptoms and functioning in long-term cancer survivors, a comparison with a reference population should always be considered. In our study population, this adjustment highlighted a significant and unexpected long-term impact on male patients. Role and social functioning were especially impacted in male patients, emphasizing the need to further investigate these gendered domains.
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http://dx.doi.org/10.1016/j.ejca.2021.07.019DOI Listing
October 2021

Unmet supportive care needs of patients with rare cancer: A systematic review.

Eur J Cancer Care (Engl) 2021 Aug 18:e13502. Epub 2021 Aug 18.

Department of Research and Development, Netherlands Comprehensive Cancer Organisation (IKNL), Utrecht, The Netherlands.

Objective: Patients with rare cancers may experience different unmet needs than those with common cancer. The objective of this systematic review was to (1) investigate unmet supportive care needs of rare cancer patients throughout the disease trajectory and (2) identify predictive factors for these unmet needs.

Methods: PubMed, PsycINFO and CINAHL were searched for publications (January 2011 to March 2021) focusing on unmet needs of patients with rare cancer. Two reviewers independently selected studies, extracted data and performed quality assessment. Findings were synthesised.

Results: The search yielded 4,598 articles, of which 59 articles met eligibility criteria and 57 were of medium or high quality. Rare cancer patients most frequently reported unmet needs in the healthcare system and information domain (up to 95%), followed by the psychological domain (up to 93%) and the physical and daily living domain (up to 80%). Unmet needs were mainly reported in the posttreatment phase. The most frequently identified predictors were higher anxiety, younger age and higher neuroticism.

Conclusion: Patients with rare cancer have unmet needs throughout their disease trajectory. Supportive care needs of rare cancer patients should be addressed individually, depending on the rare cancer subdomain and phase of disease and from diagnosis onwards.
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http://dx.doi.org/10.1111/ecc.13502DOI Listing
August 2021

Health-related quality of life after isolated limb perfusion compared to extended resection, or amputation for locally advanced extremity sarcoma: Is a limb salvage strategy worth the effort?

Eur J Surg Oncol 2021 Aug 8. Epub 2021 Aug 8.

Department of Surgical Oncology, Netherlands Cancer Institute, Amsterdam, the Netherlands. Electronic address:

Introduction: The aim of this study was to compare long-term patient reported outcomes (PROs) in patients with locally advanced extremity soft tissue sarcoma (eSTS) after isolated limb perfusion followed by resection (IR), compared to extended resection (ER), primary amputation (A) or secondary amputation after IR (IR-A).

Methods: Patients were selected from the respondents of a multi-institutional cross-sectional cohort survivorship study (SURVSARC) conducted among sarcoma survivors registered in the Netherlands Cancer Registry (NCR), 2-10 years after diagnosis. Used PROs were the EORTC QLQ-C30, the Cancer worry scale (CWS), the Hospital Anxiety and Depression Scale (HADS), and the Toronto Extremity Salvage Score (TESS).

Results: We identified 97 eSTS survivors: IR = 20, ER = 49, A = 20, IR-A = 8. While there were no differences in PROs between IR and ER, results showed better functioning and functionality in both groups versus the amputation groups. The amputation groups scored significantly lower on physical functioning (A = 62.7, IR-A = 65.7 versus IR = 78.0, ER = 82.7, p = 0.001) and role functioning (A = 67.5, IR-A = 52.8 versus IR = 79.2, ER = 80.6, p = 0.039), both EORTC QLQ-C30 scales. Also for the TESS, the scores were significantly lower for the amputation groups compared to the limb sparing groups (upper extremity p = 0.007 with A = 68.9, IR-A = 71.6 versus IR = 93.3, ER = 91.1; lower extremity p < 0.001 with A = 72.2, IR-A50.9 versus IR = 84.5 and ER = 85.5). There were no significant differences between the groups on cancer worry, anxiety and depression.

Conclusion: HRQoL in eSTS survivors treated with IR or ER is equal; for maintenance of physical functioning and functionality IR and ER outperform an amputation.
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http://dx.doi.org/10.1016/j.ejso.2021.08.007DOI Listing
August 2021

Symptom clusters in 1330 survivors of 7 cancer types from the PROFILES registry: A network analysis.

Cancer 2021 Aug 13. Epub 2021 Aug 13.

Department of Medical and Clinical Psychology, Tilburg University, Tilburg, the Netherlands.

Background: Research into the clustering of symptoms may improve the understanding of the underlying mechanisms that affect survivors' symptom burden. This study applied network analyses in a balanced sample of cancer survivors to 1) explore the clustering of symptoms and 2) assess differences in symptom clustering between cancer types, treatment regimens, and short-term and long-term survivors.

Methods: This study used cross-sectional survey data, collected between 2008 and 2018, from the population-based Patient Reported Outcomes Following Initial Treatment and Long Term Evaluation of Survivorship registry, which included survivors of 7 cancer types (colorectal cancer, breast cancer, ovarian cancer, thyroid cancer, chronic lymphocytic leukemia, Hodgkin lymphoma, and non-Hodgkin lymphoma). Regularized partial correlation network analysis was used to explore and visualize the associations between self-reported symptoms (European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire) and the centrality of these symptoms in the network (ie, how strongly a symptom was connected to other symptoms) for the total sample and for subgroups separately.

Results: In the total sample (n = 1330), fatigue was the most central symptom in the network with moderate direct relationships with emotional symptoms, cognitive symptoms, appetite loss, dyspnea, and pain. These relationships persisted after adjustments for sociodemographic and clinical characteristics. Connections between fatigue and emotional symptoms, appetite loss, dyspnea, and pain were consistently found across all cancer types (190 for each), treatment regimens, and short-term and long-term survivors.

Conclusions: In a heterogenous sample of cancer survivors, fatigue was consistently the most central symptom in all networks. Although longitudinal data are needed to build a case for the causal nature of these symptoms, cancer survivorship rehabilitation programs could focus on fatigue to reduce the overall symptom burden.
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http://dx.doi.org/10.1002/cncr.33852DOI Listing
August 2021

Assessing measurement invariance in the EORTC QLQ-C30.

Qual Life Res 2021 Jul 29. Epub 2021 Jul 29.

Department of Methodology and Statistics, Tilburg School of Social and Behavioral Sciences, Tilburg University, Tilburg, The Netherlands.

Purpose: We aimed to investigate measurement invariance (MI) in the European Organisation for research and treatment of cancer quality of life questionnaire core 30 (EORTC QLQ-C30) in a heterogeneous sample of patients with cancer.

Methods: Data from 12 studies within the PROFILES registry were used for secondary analyses (n = 7007). We tested MI by successive restrictions on thresholds, loadings, and intercepts across subgroups based on primary cancer sites, age, sex, time since diagnosis, and life stage, using multigroup confirmatory factor analysis (MGCFA) for ordered categorical measures. We also evaluated the impact of potentially miss-specified parameter equality across groups on latent factor means by releasing threshold and loading equality constraints for each item at a time.

Results: Results showed that the highest level of MI (invariance of thresholds, loadings, and intercepts) was found across groups based on time since diagnosis and life stage and to a lesser extent across groups based on sex, age, and primary tumor site. On item level, however, changes in the item's associated factor means were relatively small and in most cases canceled each other out to some extent.

Conclusions: Given only a few instances of non-invariance in our study, there is reason to be confident that valid conclusions can be drawn from between-group comparisons of QLQ-C30 latent means as operationalized in our study. Nonetheless, further research into MI between other subgroups for the QLQ-C30 (i.e., treatment effects and ethnicity) is warranted. We stress the importance of including MI evaluations in the development and validation of measurement instruments.
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http://dx.doi.org/10.1007/s11136-021-02961-8DOI Listing
July 2021

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.

Cancers (Basel) 2021 Jun 22;13(13). Epub 2021 Jun 22.

Department of Surgical Oncology, Erasmus MC Cancer Institute, 3015 GD Rotterdam, The Netherlands.

Sporadic desmoid-type fibromatosis (DTF) is a rare soft tissue tumour with an unpredictable clinical course. These tumours are incapable of metastasising, but their local aggressive tumour growth and tendency to recur locally can result in a substantial symptom burden. Measuring the impact of DTF on health-related quality of life (HRQoL) can be challenging due to the variable clinical presentation of the disease. Therefore, a HRQoL instrument assessing DTF-specific issues is needed. The QUALIFIED study aims to (1) pre-test a previously developed DTF-specific HRQoL tool (the DTF-QoL); (2) evaluate prevalence of HRQoL issues in adult DTF patients; and (3) identify subgroups at risk of impaired HRQoL. This study (NCT04289077) is an international, multicentre, cross-sectional, observational cohort study. Patients ≥ 18 years with sporadic DTF from the Netherlands and the United Kingdom will be invited to complete a set of questionnaires specifically composed for this patient group. Questionnaires will be completed using PROFILES (Patient Reported Outcomes Following Initial treatment and Long-term Evaluation of Survivorship). Analyses will include testing the psychometric properties of the DTF-QoL and evaluating the prevalence of HRQoL issues using the DTF-QoL, EORTC QOL-C30 and EQ-5D-5L, among other questionnaires. This study will provide insight into HRQoL issues experienced by patients with DTF. Awareness of these issues and the implementation of the DTF-QoL in research and clinical practice can help to improve overall HRQoL and to provide personalised care.
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http://dx.doi.org/10.3390/cancers13133068DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8269050PMC
June 2021

Comprehensive Assessment of Incidence, Risk Factors, and Mechanisms of Impaired Medical and Psychosocial Health Outcomes among Adolescents and Young Adults with Cancer: Protocol of the Prospective Observational COMPRAYA Cohort Study.

Cancers (Basel) 2021 May 13;13(10). Epub 2021 May 13.

Department of Medical Oncology, Netherlands Cancer Institute, 1066 CX Amsterdam, The Netherlands.

Adolescent and young adult (AYA) cancer patients suffer from delay in diagnosis, and lack of centralized cancer care, age-adjusted expertise, and follow-up care. This group presents with a unique spectrum of cancers, distinct tumor biology, cancer risk factors, developmental challenges, and treatment regimens that differ from children and older adults. It is imperative for advances in the field of AYA oncology to pool data sources across institutions and create large cohorts to address the many pressing questions that remain unanswered in this vulnerable population. We will create a nationwide infrastructure (COMPRAYA) for research into the incidence, predictive/prognostic markers, and underlying mechanisms of medical and psychosocial outcomes for AYA between 18-39 years diagnosed with cancer. A prospective, observational cohort of ( = 4000), will be established. Patients will be asked to (1) complete patient-reported outcome measures; (2) donate a blood, hair, and stool samples (to obtain biochemical, hormonal, and inflammation parameters, and germline DNA); (3) give consent for use of routinely archived tumor tissue and clinical data extraction from medical records and registries; (4) have a clinic visit to assess vital parameters. Systematic and comprehensive collection of patient and tumor characteristics of AYA will support the development of evidence-based AYA care programs and guidelines.
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http://dx.doi.org/10.3390/cancers13102348DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8152481PMC
May 2021

Supportive care needs of patients living with an extremely rare and unpredictable cancer: The Epithelioid Haemangioendothelioma patient experience.

Eur J Cancer Care (Engl) 2021 May 14:e13461. Epub 2021 May 14.

Department of Psychosocial Research and Epidemiology, Netherlands Cancer Institute, Amsterdam, The Netherlands.

Objective: Epithelioid haemangioendothelioma (EHE) is an ultrarare vascular sarcoma with an incidence of <1/million/year and a large clinical heterogeneity. Data on supportive care needs of rare cancer patients are scarce. This study aimed to investigate the level of supportive care needs of EHE patients and its association with sociodemographic, clinical and symptom burden characteristics.

Methods: We present secondary data of a cross-sectional questionnaire study involving EHE patients recruited from the international EHE Facebook group. Data were collected using the web-based PROFILES registry. Unmet needs were measured with Supportive Care Needs Survey Short Form (SCNS-SF34).

Results: 115 EHE patients from 20 countries completed the online questionnaire. Mean level of supportive care needs was 68.4 (range 34-170), with the highest mean score on the psychological domain. Supportive care needs were associated with age, disease stage, years since diagnosis and number of tumour locations. Highly symptomatic patients (33%) reported more supportive care needs than patients with low or intermediate symptom burden.

Conclusion: Supportive care needs were found in all domains, highest in the psychological domain, and were associated with sociodemographic, clinical and symptom burden characteristics. Adequate and tailored supportive care should be offered especially to highly symptomatic EHE patients.
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http://dx.doi.org/10.1111/ecc.13461DOI Listing
May 2021

'This is not part of my life plan': A qualitative study on the psychosocial experiences and practical challenges in young adults with cancer age 25 to 39 years at diagnosis.

Eur J Cancer Care (Engl) 2021 Sep 3;30(5):e13458. Epub 2021 May 3.

Institute of Cancer Research, London, UK.

Objective: Adolescents and young adults with cancer face unique psychosocial and practical issues. However, patients across this group encounter different life experiences, cancer diagnoses and treatment settings given the tailored services for patients ages 15 to 24. Here, we qualitatively explore the psychosocial experiences and practical challenges of young adults (YAs) with cancer diagnosed between ages 25 and 39 in the United Kingdom.

Methods: We invited YAs diagnosed with cancer in the 5 years prior to enrolment at participating sites to take part in semi-structured interviews or focus groups. Transcripts were analysed using inductive thematic analysis. Two YA patients reviewed the results to ensure robustness.

Results: Sixty-five YAs with varied diagnoses participated. Participants struggled to balance work, childcare and financial solvency with treatment. The halt in family and work life as well as changes in image and ability threatened participants' identity and perceived 'normality' as a YA, however, these also stimulated positive changes. YAs experienced social isolation from friends and family, including children. Many struggled to cope with uncertainty around treatment outcomes and disease recurrence.

Conclusion: The disruption of family and work life can lead to age-specific issues in YAs diagnosed with cancer. Age-tailored psychological and practical services must be considered.
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http://dx.doi.org/10.1111/ecc.13458DOI Listing
September 2021

Health-Related Quality of Life Issues in Adolescents and Young Adults with Cancer: Discrepancies with the Perceptions of Health Care Professionals.

J Clin Med 2021 Apr 22;10(9). Epub 2021 Apr 22.

Dutch AYA 'Young and Cancer' Care Network, AYA IKNL, 3511 DT Utrecht, The Netherlands.

This study aimed to identify health-related quality of life (HRQoL) issues of relevance for adolescent and young adult (AYA) cancer patients, the perception of relevant HRQoL issues for AYA in generalby the health care professionals (HCP), and discrepancies between issues identified by AYAs and HCP. Dutch AYAs aged 18-35 years at the time of cancer diagnosis ( = 83) and HCPs ( = 34) involved in AYA oncology were invited to complete the Quality of Life for Cancer Survivors questionnaire. HCPs rated physical symptoms such as fatigue, appetite, pain, constipation, sleep disorders, nausea and neuropathy among AYA cancer patients significantly higher (i.e., more problems) than AYA cancer patients. AYA cancer patients rated overall physical health and quality of life, happiness, satisfaction, usefulness and support from others, all positively formulated questions, significantly higher (i.e., more positive) than HCPs. The most highly rated issues (negative and positive combined) for AYAs were: perceived support from others, distress about initial cancer diagnosis, distress for family and overall quality of life. HCPs identified distress about diagnosis, treatment, family and interference of illness with employment/study as the most problematic issues (all negative) for AYAs. Five of the ten most common issues listed by patients and HCPs were the same. Male AYAs, patients treated with curative intent and those with a partner rated positive HRQoL issues higher than their counterparts. The discrepancy between the perception of patients and HCPs illustrates the importance of patient involvement in organizing physical and psychosocial care.
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http://dx.doi.org/10.3390/jcm10091833DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8122798PMC
April 2021

Exploring Older Women's Attitudes to and Experience of Treatment for Advanced Ovarian Cancer: A Qualitative Phenomenological Study.

Cancers (Basel) 2021 Mar 10;13(6). Epub 2021 Mar 10.

Gynaecology Unit, Royal Marsden NHS Foundation Trust, London SW3 6JJ, UK.

Older women with ovarian cancer more often receive less intensive treatment and early discontinuation compared to younger women. There is little understanding of older women's treatment experience and whether this contributes to declining intensive treatment. We aimed to explore the lived experience of older patients with advanced ovarian cancer undergoing chemotherapy, their treatment preferences and treatment burden. We conducted a phenomenological qualitative study with 15 women who had completed at least three cycles of first-line chemotherapy for advanced epithelial ovarian cancer, aged 65 years or older at the first cycle, at one tertiary cancer centre. We conducted interviews and focus groups and analysed the transcripts using inductive thematic analysis. Women reported a strong preference for active treatment despite treatment burden and toxicities. Participants undertook treatment to lengthen their lives for themselves and their families. Participants did not see age as a barrier to treatment. Patients expressed determination not to let cancer interfere with daily life. Women felt overwhelmed with information and struggled with daily tasks due to fatigue. Logistical issues, such as transportation and ineffective communication between healthcare providers, caused substantial distress. Despite these logistical burdens and toxicities, participants were positive about their care experience and desire for anticancer treatment. Older women may benefit from additional support to facilitate effective communication during the early stages of treatment.
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http://dx.doi.org/10.3390/cancers13061207DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8001330PMC
March 2021

Self-perceived cognitive functioning and quality of life among cancer survivors: results from the PROFILES registry.

J Cancer Surviv 2021 Mar 17. Epub 2021 Mar 17.

Department of Research and Development, Netherlands Comprehensive Cancer Organisation, P.O. Box 19079, 3501, DB, Utrecht, The Netherlands.

Purpose: The aim was to investigate the level of self-perceived cognitive functioning and its associated factors among a large population-based cohort of cancer survivors and their matched controls.

Methods: Data were obtained from population-based PROFILES registry cohorts, including colon, rectum, prostate or thyroid cancer, Hodgkin lymphoma (HL), non-Hodgkin lymphoma (NHL), chronic lymphocytic leukemia, multiple myeloma (MM), melanoma, or basal cell carcinoma (BCC)/squamous cell carcinoma (SCC). All patients completed the EORTC QLQ-C30 from which self-perceived cognitive functioning, fatigue, functioning, and global health status/quality of life (GHS/QoL) were used. The PROFILES registry data were linked with the Netherlands Cancer Registry to obtain sociodemographic and clinical data.

Results: Six thousand seven hundred eighty-six survivors were included (response rate=76%). Survivors, except for melanoma and BCC/SCC, reported on average lower self-perceived cognitive functioning scores compared to their matched controls (all p's<0.01). Largest differences with the norm were observed in thyroid cancer, HL, NHL and MM, and younger survivors (<50 years). Survivors with lower emotional functioning and more fatigue were more likely to report impaired self-perceived cognitive functioning.

Conclusion: Self-perceived impaired cognitive functioning is prevalent among a wide range of cancer survivors, especially among survivors <50 years. Approaches targeting cognitive problems including attention for co-occurring symptoms such as fatigue and emotional impairments are needed to improve care for these patients.

Implications For Cancer Survivors: Cancer survivors and clinicians should be aware that impaired self-perceived cognitive functioning is a frequently reported consequence of cancer and its treatment among survivors of various cancer types. Clinicians can redirect survivors to a relevant healthcare provider or program to target cognitive problems.
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http://dx.doi.org/10.1007/s11764-021-01023-9DOI Listing
March 2021

Adolescents and Young Adults Living With an Uncertain or Poor Cancer Prognosis: The "New" Lost Tribe.

J Natl Compr Canc Netw 2021 03 2;19(3):240-246. Epub 2021 Mar 2.

1Department of Psychosocial Research and Epidemiology, Netherlands Cancer Institute.

Historically, adolescent and young adult (AYA) patients with cancer, diagnosed for the first time at age 15 through 39 years, have often been identified as a "lost tribe" without a medical "home"; neither pediatric nor adult oncology services were able to provide age-appropriate care to this specific group. Internationally, AYA care programs are being established to bridge the gap between the age-defined healthcare worlds and to address the specific needs of AYAs with cancer. However, AYA care programs mostly focus on improving cure rates and addressing survivorship issues, and direct less attention to the unique needs of those living with an uncertain and/or poor cancer prognosis. Additionally, palliative care services are typically poorly equipped to address the age-specific needs of this group. Given that increasingly more AYAs with an uncertain and/or poor cancer prognosis are gaining life years because of novel treatments, and sometimes even face the prospect of long-term disease control, AYA care programs should address the unique palliative care needs of this "new" lost tribe within AYA oncology. This report provides a definition and description of the AYA population living with an uncertain and/or poor cancer prognosis in terms of epidemiologic, clinical, and psychosocial characteristics and challenges, and provides perspectives for future research and care initiatives. It also highlights the need to comprehensively examine the experience of AYAs who are living with uncertain and/or poor cancer prognosis to adjust best care practices for this unique group.
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http://dx.doi.org/10.6004/jnccn.2020.7696DOI Listing
March 2021

Self-reported causes of cancer among 6881 survivors with 6 tumour types: results from the PROFILES registry.

J Cancer Surviv 2021 Mar 1. Epub 2021 Mar 1.

Netherlands Comprehensive Cancer Organisation, Utrecht, The Netherlands.

Objective: Our aim was to describe and compare self-reported causal attributions (interpretations of what caused an illness) among cancer survivors and to assess which sociodemographic and clinical characteristics are associated with them.

Methods: Data from five population-based PROFILES registry samples (i.e. lymphoma (n = 993), multiple myeloma (n = 156), colorectal (n = 3989), thyroid (n = 306), endometrial (n = 741), prostate cancer (n = 696)) were used. Causal attributions were assessed with a single question.

Results: The five most often reported causal attributions combined were unknown (21%), lifestyle (19%), biological (16%), other (14%), and stress (12%). Lymphoma (49%), multiple myeloma (64%), thyroid (55%), and prostate (64%) cancer patients mentioned fixed causes far more often than modifiable or modifiable/fixed. Colorectal (33%, 34%, and 33%) and endometrial (38%, 32%, and 30%) cancer survivors mentioned causes that were fixed, modifiable, or both almost equally often. Colorectal, endometrial, and prostate cancer survivors reported internal causes most often, whereas multiple myeloma survivors more often reported external causes, while lymphoma and thyroid cancer survivors had almost similar rates of internal and external causes. Females, those older, those treated with hormonal therapy, and those diagnosed with prostate cancer were less likely to identify modifiable causes while those diagnosed with stage 2, singles, with ≥2 comorbid conditions, and those with endometrial cancer were more likely to identify modifiable causes.

Conclusion: In conclusion, this study showed that patients report both internal and external causes of their illness and both fixed and modifiable causes. This differsbetween the various cancer types.

Implications For Cancer Survivors: Although the exact cause of cancer in individual patients is often unknown, having a well-informed perception of the modifiable causes of one's cancer is valuable since it can possibly help survivors with making behavioural adjustments in cases where this is necessary or possible.
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http://dx.doi.org/10.1007/s11764-021-00989-wDOI Listing
March 2021

Evaluation of a Positive Psychology Group Intervention in Nature for Young Cancer Survivors to Promote Well-Being and Post-Cancer Identity Development.

J Adolesc Young Adult Oncol 2021 Feb 18. Epub 2021 Feb 18.

Department of Medical Oncology, Netherlands Cancer Institute-Antoni van Leeuwenhoek, Amsterdam, the Netherlands.

Adolescent and young adult (AYA) cancer survivors (15-39 years) often struggle with their post-cancer identity. We developed an age-appropriate positive psychology group intervention with fellow AYA cancer survivors in a nature-rich environment. The aim of this study was to examine the needs and expectations of participants of this new, 1-week post-cancer identity intervention, and to evaluate their experiences to identify factors that contribute to the quality and impact of post-cancer mental health care interventions. This was a mixed-method exploratory pilot study evaluating a new, 1-week post-cancer identity intervention. The participants ( = 13) completed questionnaires at baseline measuring needs and expectations, and on the last day of the intervention and at 1-month follow-up, measuring experiences. Participants' expectations to be supported in finding their post-cancer identity and receiving acknowledgment and recognition of their suffering in fellow AYAs were met. The intervention was perceived as positively contributing to post-cancer identity development ( = 11) and several aspects of well-being. Most appreciated elements of the intervention were peer support and the nature-rich environment on perceived well-being. The group-based positive psychology after care intervention in nature for AYA oncology was well received by participants and provided useful feedback for improvement of future editions. The intervention could offer support to AYA's in the promotion of their well-being and post-cancer identity development, but more research is needed to confirm this.
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http://dx.doi.org/10.1089/jayao.2020.0147DOI Listing
February 2021

Diagnosed with a Rare Cancer: Experiences of Adult Sarcoma Survivors with the Healthcare System-Results from the SURVSARC Study.

Cancers (Basel) 2021 Feb 8;13(4). Epub 2021 Feb 8.

Department of Medical Oncology, Netherlands Cancer Institute, Plesmanlaan 121, 1066 CX Amsterdam, The Netherlands.

The aim of this study was to explore the experience of rare cancer patients with the healthcare system and examine differences between age groups (adolescents and young adults (AYA, 18-39 years), older adults (OA, 40-69 years) and elderly (≥70 years)). Dutch sarcoma patients, 2-10 years after diagnosis, completed a questionnaire on their experience with the healthcare system, satisfaction with care, information needs, patient and diagnostic intervals (first symptom to first doctor's visit and first doctor's visit to diagnosis, respectively) and received supportive care. In total, 1099 patients completed the questionnaire (response rate 58%): 186 AYAs, 748 OAs and 165 elderly. Many survivors experienced insufficient medical and non-medical guidance (32% and 38%), although satisfaction with care was rated good to excellent by 94%. Both patient and diagnostic intervals were >1 month for over half of the participants and information needs were largely met (97%). AYAs had the longest patient and diagnostic intervals, experienced the greatest lack of (non-)medical guidance, had more desire for patient support groups and used supportive care most often. This nationwide study among sarcoma survivors showed that healthcare experiences differ per age group and identified needs related to the rarity of these tumors, such as improvements concerning (non-)medical guidance and diagnostic intervals.
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http://dx.doi.org/10.3390/cancers13040679DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7914609PMC
February 2021

Incorporating the Patient Voice in Sarcoma Research: How Can We Assess Health-Related Quality of Life in This Heterogeneous Group of Patients? A Study Protocol.

Cancers (Basel) 2020 Dec 22;13(1). Epub 2020 Dec 22.

Department of Medical Oncology, Netherlands Cancer Institute, 1066 CX Amsterdam, The Netherlands.

Sarcomas comprise 1% of adult tumors and are very heterogeneous. Long-lasting and cumulative treatment side-effects detract from the (progression-free) survival benefit of treatment. Therefore, it is important to assess treatment effectiveness in terms of patient-reported outcomes (PROs), including health-related quality of life (HRQoL) as well. However, questionnaires capturing the unique issues of sarcoma patients are currently lacking. Given the heterogeneity of the disease, the development of such an instrument may be challenging. The study aims to (1) develop an exhaustive list of all HRQoL issues relevant to sarcoma patients and determine content validity; (2) determine a strategy for HRQoL measurement in sarcoma patients. We will conduct an international, multicenter, mixed-methods study (registered at clinicaltrials.gov: NCT04071704) among bone or soft tissue sarcoma patients ≥18 years, using EORTC Quality of Life Group questionnaire development guidelines. First, an exhaustive list of HRQoL issues will be generated, derived from literature and patient ( = 154) and healthcare professional (HCP) interviews ( = 30). Subsequently, another group of sarcoma patients ( = 475) and HCPs ( = 30) will be asked to rate and prioritize the issues. Responses will be analyzed by priority, prevalence and range of responses for each item. The outcome will be a framework for tailored HRQoL measurement in sarcoma patients, taking into account sociodemographic and clinical variables.
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http://dx.doi.org/10.3390/cancers13010001DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7792589PMC
December 2020

The importance of a collaborative health-related quality of life measurement strategy for adolescents and young adults with cancer.

Cancer 2021 May 26;127(10):1712-1713. Epub 2021 Jan 26.

School of Health Sciences, Faculty of Environmental and Life Sciences, University of Southampton, Southampton, United Kingdom.

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http://dx.doi.org/10.1002/cncr.33416DOI Listing
May 2021

Clinical Trials for Real-World Elderly Patients With Metastatic Soft-Tissue Sarcomas: The Importance of Study Design and Patient-Reported Outcomes.

J Clin Oncol 2021 03 13;39(7):860-861. Epub 2021 Jan 13.

Eugenie Younger, MD, Sarcoma Unit, Royal Marsden NHS Foundation Trust, London, United Kingdom; Olga Husson, PhD, Division of Clinical Studies, Institute of Cancer Research, London, United Kingdom; Department of Medical Oncology, Netherlands Cancer Institute, Amsterdam, the Netherlands, and Winette T. A. van der Graaf, MD, PhD; Department of Medical Oncology, Netherlands Cancer Institute, Amsterdam, the Netherlands.

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http://dx.doi.org/10.1200/JCO.20.02747DOI Listing
March 2021

The route to diagnosis of sarcoma patients: Results from an interview study in the Netherlands and the United Kingdom.

PLoS One 2020 7;15(12):e0243439. Epub 2020 Dec 7.

Antoni van Leeuwenhoekziekenhuis, Amsterdam, The Netherlands.

Introduction: Sarcomas are rare tumours. Early diagnosis is challenging, but important for local control and potentially survival and quality of life(QoL). We investigated (1)the route to diagnosis (RtD) experienced by sarcoma patients, including factors contributing to the length of the RtD from patients' perspective; (2)the impact of the RtD on QoL and care satisfaction; and (3)differences in aims 1-2 between English and Dutch patients.

Methods: Fifteen sarcoma patients from The Royal Marsden Hospital, United Kingdom, and Radboud University Medical Centre, The Netherlands, were interviewed, exploring RtD experiences. Interviews were analysed according to qualitative content analysis.

Results: The main themes were: patient interval, diagnostic interval, reflection on the RtD and recommendations for improvement. Patient interval was long if symptoms were attributed as benign, did not interfere with daily life or were expected to cease. An incorrect working diagnosis, ineffective process of additional investigations, long referral times and lack of a lead clinician lengthened the diagnostic interval. Long waiting times, false reassurance and inadequate information provision led to dissatisfaction and a high emotional burden. Factors for improvement included increasing awareness of patients and healthcare providers, empowering patients, and having a lead clinician.

Conclusion: The RtD of sarcoma patients is complex. Increasing awareness of patients and healthcare providers may contribute to shorten the RtD.
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http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0243439PLOS
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7721153PMC
January 2021

Perceived Care and Well-being of Patients With Cancer and Matched Norm Participants in the COVID-19 Crisis: Results of a Survey of Participants in the Dutch PROFILES Registry.

JAMA Oncol 2021 02;7(2):279-284

Department of Research and Development, Netherlands Comprehensive Cancer Organisation (IKNL), Utrecht, the Netherlands.

Importance: As the resolution of the coronavirus disease 2019 (COVID-19) crisis is unforeseeable, and/or a second wave of infections may arrive in the fall of 2020, it is important to evaluate patients' perspectives to learn from this.

Objective: To assess how Dutch patients with cancer perceive cancer treatment and follow-up care (including experiences with telephone and video consultations [TC/VC]) and patients' well-being in comparison with a norm population during the COVID-19 crisis.

Design, Setting, And Participants: Cross-sectional study of patients participating in the Dutch Patient Reported Outcomes Following Initial Treatment and Long-term Evaluation of Survivorship (PROFILES) registry and a norm population who completed a questionnaire from April to May 2020.

Main Outcomes And Measures: Logistic regression analysis assessed factors associated with changes in cancer care (treatment or follow-up appointment postponed/canceled or changed to TC/VC). Differences in quality of life, anxiety/depression, and loneliness between patients and age-matched and sex-matched norm participants were evaluated with regression models.

Results: The online questionnaire was completed by 4094 patients (48.6% response), of whom most were male (2493 [60.9%]) and had a mean (SD) age of 63.0 (11.1) years. Of these respondents, 886 (21.7%) patients received treatment; 2725 (55.6%) received follow-up care. Treatment or follow-up appointments were canceled for 390 (10.8%) patients, whereas 160 of 886 (18.1%) in treatment and 234 of 2725 (8.6%) in follow-up had it replaced by a TC/VC. Systemic therapy, active surveillance, or surgery were associated with cancellation of treatment or follow-up appointment. Younger age, female sex, comorbidities, metastasized cancer, being worried about getting severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), and receiving supportive care were associated with replacement of a consultation with a TC/VC. Patients and norm participants reported that the COVID-19 crisis made them contact their general practitioner (852 of 4068 [20.9%] and 218 of 979 [22.3%]) or medical specialist/nurse (585 of 4068 [14.4%] and 144 of 979 [14.7%]) less quickly when they had physical complaints or concerns. Most patients who had a TC/VC preferred a face-to-face consultation, but 151 of 394 (38.3%) were willing to use a TC/VC again. Patients with cancer were more worried about getting infected with SARS-CoV-2 compared with the 977 norm participants (917 of 4094 [22.4%] vs 175 of 977 [17.9%]). Quality of life, anxiety, and depression were comparable, but norm participants more often reported loneliness (114 of 977 [11.7%] vs 287 of 4094 [7.0%]) than patients with cancer (P = .009).

Conclusions And Relevance: Among patients with cancer in the Netherlands, 1 in 3 reported changes in cancer care in the first weeks of the COVID-19 crisis. Long-term outcomes need to be monitored. The crisis may affect the mental well-being of the general population relatively more than that of patients with cancer.
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http://dx.doi.org/10.1001/jamaoncol.2020.6093DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7689559PMC
February 2021

Incidence, Survival, and Mortality Trends of Cancers Diagnosed in Adolescents and Young Adults (15-39 Years): A Population-Based Study in The Netherlands 1990-2016.

Cancers (Basel) 2020 Nov 18;12(11). Epub 2020 Nov 18.

Department of Psychosocial Research and Epidemiology (PSOE), Netherlands Cancer Institute (NKI), 1066 CX Amsterdam, The Netherlands.

Adolescent and young adult (AYA) cancer patients, aged 15-39 years at primary cancer diagnosis, form a distinct, understudied, and underserved group in cancer care. This study aimed to assess long-term trends in incidence, survival, and mortality of AYA cancer patients within the Netherlands. Data on all malignant AYA tumours diagnosed between 1990-2016 ( = 95,228) were obtained from the Netherlands Cancer Registry. European age-standardised incidence and mortality rates with average annual percentage change (AAPC) statistics and five-year relative survival rates were calculated. The overall cancer incidence increased from 54.6 to 70.3 per 100,000 person-years (AAPC: +1.37%) between 1990-2016, and increased for both sexes individually and for most cancer types. Five-year relative survival overall improved from 73.7% in 1990-1999 to 86.4% in 2010-2016 and improved for both sexes and most cancer types. Survival remained poor (<60%) for rhabdomyosarcoma, lung, stomach, liver, bladder, and pancreatic carcinomas, among others. Mortality rates among male AYAs overall declined from 10.8 to 6.6 (AAPC: -1.64%) and from 14.4 to 10.1 per 100,000 person-years (AAPC: -1.81%) for female AYAs since 1990. Mortality rates remained unchanged for male AYAs aged 20-24 and 25-29 years. In conclusion, over the past three decades, there has been a considerable increase in cancer incidence among AYAs in the Netherlands. Meanwhile, the survival improved and the mortality overall declined. Survival at five-years now well exceeds above 80%, but did not do so for all cancer types.
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http://dx.doi.org/10.3390/cancers12113421DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7698904PMC
November 2020

Lessons for Employing Participatory Design When Developing Care for Young People with Cancer: A Qualitative Multiple-Case Study.

J Adolesc Young Adult Oncol 2021 Aug 12;10(4):404-417. Epub 2020 Nov 12.

Radboud University Medical Center (Radboudumc), Nijmegen, The Netherlands.

Participatory design (PD) is a collective creative design process involving designers and nondesigners. There is limited reporting on the experience of using PD for adolescent and young adult (AYA) care. This study summarizes lessons from employing PD to develop care for AYAs with cancer. A qualitative multiple-case study method was conducted of three PD processes addressing food (FfC), intimacy and sexuality (I&S), and integrative medicine (IM) in caring for AYAs with cancer. Local key stakeholders, who were exposed to a problem and had not been successful at solving it individually, were recruited to "dream" together. Through this synergy, a shared understanding of the problem and a joint mission emerged to find a solution. PD tools were used to develop a problem definition. An open mind and explorative research helped to understand the problems, and stakeholders were managed such that idea-sharing and learning were enabled. Designers translated ideas into prototypes. The PD process was prolonged due to the hierarchical hospital environment, business considerations, and additionally required evidence. The FfC program produced an effective new food service for the whole hospital. The I&S initiative developed a podcast, two articles, and a prototype website. The IM project developed a pilot study. For a PD process to successfully develop care for AYAs, one needs to use designers and skilled people, PD tools, and an open-ended approach to visualize and materialize new forms of care. Furthermore, recruitment and facilitation techniques help leverage knowledge and create a synergy in a democratic environment between stakeholders.
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http://dx.doi.org/10.1089/jayao.2020.0098DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8388252PMC
August 2021

uality of life and experiences of sarcoma trajectories (the study): protocol for an international observational cohort study on diagnostic pathways of sarcoma patients.

BMJ Open 2020 10 26;10(10):e039309. Epub 2020 Oct 26.

Department of Medical Oncology, Radboud University Medical Centre, Nijmegen, The Netherlands.

Introduction: Sarcomas are rare tumours with considerable heterogeneity. Early and accurate diagnosis is important to optimise patient outcomes in terms of local disease control, overall survival (OS) and health-related quality of life (HRQoL). Time to diagnosis is variable in bone as well as soft tissue sarcoma. Possible factors for a long time from first symptom to diagnosis (the total interval) include patient, tumour and healthcare characteristics, but until now the most relevant risk factors and its association with outcomes remain unknown. Our study aims to (1) quantify total interval, the time interval from first symptom until (histological) diagnosis; (2) identify factors associated with interval length and (3) determine the association between total interval and HRQoL, stage and tumour size at diagnosis, progression-free survival (PFS) and OS.

Methods And Analysis: We will conduct a longitudinal, prospective, international, multicentre cohort study among patients aged ≥18 years with newly diagnosed bone or soft tissue sarcoma at eight centres (three in UK, five in The Netherlands). Patients will be asked to complete questionnaires at five points in time; one at diagnosis and at follow-up points of 3, 6, 12 and 24 months. Questionnaire data is collected within the Patient Reported Outcomes Following Initial treatment and Long term Evaluation of Survivorship (PROFILES) registry: an international data management system for collection of patient-reported outcomes. Clinical data will be extracted from patient records. The primary endpoint is HRQoL at diagnosis, measured with the EORTC QLQ-C30. Secondary endpoints are stage and tumour size at diagnosis, PFS, OS, additional patient-reported outcomes, such as quality-adjusted life years and psychological distress.

Ethics And Dissemination: Ethical approval was given by the Health Research Authority and Research Ethics Committee for the United Kingdom (18/WA/0096) and medical ethical committee of Radboudumc for The Netherlands (2017-3881). Results will be presented in peer-reviewed journals and presented at meetings.

Trial Registration Number: NCT03441906.
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http://dx.doi.org/10.1136/bmjopen-2020-039309DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7592281PMC
October 2020

Unraveling the Heterogeneity of Sarcoma Survivors' Health-Related Quality of Life Regarding Primary Sarcoma Location: Results from the SURVSARC Study.

Cancers (Basel) 2020 Oct 22;12(11). Epub 2020 Oct 22.

Department of Medical Oncology, The Netherlands Cancer Institute, Antoni van Leeuwenhoek, 1066 CX Amsterdam, The Netherlands.

Sarcoma patients experience physical and psychological symptoms, depending on age of onset, subtype, treatment, stage, and location of the sarcoma, which can adversely affect patients' health-related quality of life (HRQoL). This study aimed to unravel the heterogeneity of sarcoma survivors' HRQoL regarding primary sarcoma location. A cross-sectional study was conducted among Dutch sarcoma survivors ( = 1099) aged ≥18, diagnosed 2-10 years ago. Primary sarcoma locations were head and neck, chest, abdominal including retroperitoneal, pelvis including urogenital organs, axial skeleton, extremities (upper and lower), breast, skin and other locations. The European Organization for Research and Treatment of Cancer-Quality of Life Questionnaire (EORTC QLQ)-C30 was used to measure HRQoL accompanied by treatment-specific HRQoL questions. Sociodemographic and clinical characteristics were collected from the Netherlands Cancer Registry. Axial skeleton sarcomas had the lowest functioning levels and highest symptoms compared to other locations. Skin sarcomas had the highest functioning levels and lowest symptoms on most scales. Bone sarcomas scored worse on several HRQoL domains compared to soft tissue sarcomas. High prevalence of treatment-specific HRQoL issues were found per location. In conclusion, sarcomas can present everywhere, which is reflected by different HRQoL outcomes according to primary sarcoma location. The currently used HRQoL measure lacks treatment-specific questions and is too generic to capture all sarcoma-related issues, emphasizing the necessity for a comprehensive sarcoma-specific HRQoL measurement strategy.
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http://dx.doi.org/10.3390/cancers12113083DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7690571PMC
October 2020

Unravelling the heterogeneity of soft tissue and bone sarcoma patients' health-related quality of life: a systematic literature review with focus on tumour location.

ESMO Open 2020 10;5(5):e000914

Medical Oncology, Antoni van Leeuwenhoek Netherlands Cancer Institute, Amsterdam, The Netherlands; Division of Clinical Studies, Institute of Cancer Research, London, United Kingdom. Electronic address:

Patients with sarcoma experience many physical and psychological symptoms, adversely affecting their health-related quality of life (HRQoL). HRQoL assessment is challenging due to the diversity of the disease. This review aims to unravel the heterogeneity of HRQoL of patients with sarcoma with regard to tumour location and to summarise the used measures in research. English-language literature from four databases published between January 2000 and April 2019 was reviewed. Studies that described adult sarcoma HRQoL outcomes were included and classified according to primary sarcoma location. Eighty-seven articles met the inclusion criteria covering sarcoma of the extremities (n=35), pelvis and axial skeleton (n=9), pelvis and extremities (n=5), head and neck (n=4), retroperitoneum (n=2) and multiple sarcoma locations (n=33), respectively. Urogenital and thoracic sarcoma were lacking. Fifty-four different questionnaires were used, most often cancer-generic or generic HRQoL questionnaires. Patients with sarcoma reported lower HRQoL than the general population. Distinctive patterns of HRQoL outcomes according to tumour location regarding symptoms, physical functioning, disability and psychosocial well-being were identified. In metastatic sarcoma, mostly constitutional symptoms were present. To comprehensively assess HRQoL, a sarcoma-specific measurement strategy should be developed and used covering the heterogeneity of sarcoma including location-specific issues to improve personalised HRQoL assessment in future research and clinical practice.
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http://dx.doi.org/10.1136/esmoopen-2020-000914DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7577059PMC
October 2020

Patient and diagnostic intervals of survivors of sarcoma: Results from the SURVSARC study.

Cancer 2020 12 1;126(24):5283-5292. Epub 2020 Oct 1.

Department of Medical Oncology, Radboud University Medical Center, Nijmegen, The Netherlands.

Background: Patients diagnosed with sarcoma are hypothesized to experience a prolonged route to a cancer diagnosis. This route, the total interval, can be divided into a patient interval (the time from the appearance of symptoms to physician consultation) and diagnostic interval (time from the first consultation to diagnosis). In the current study, the authors investigated these intervals among survivors of sarcoma and identified factors associated with prolonged intervals.

Methods: A cross-sectional study was conducted among adult patients with sarcoma 2 to 10 years after diagnosis. Patients completed a questionnaire regarding their total interval, which was linked to clinical data from the Netherlands Cancer Registry. Descriptive statistics were used to describe intervals. Based on Dutch clinical guidelines, a diagnostic interval ≥1 month was considered to be prolonged and an interval ≥3 months was considered as very long. Multivariable regression analyses investigated associations between patient and tumor characteristics and interval length.

Results: A total of 1099 participants were included (response rate, 58%); approximately 60% reported a patient interval ≥1 month and 36% reported a patient interval ≥3 months. Risk factors for a very long patient interval were sarcoma of the skin or pelvis, liposarcoma, or rhabdomyosarcoma. Stage III disease was associated with a shorter patient interval. The diagnostic interval length was ≥1 month in 55% of patients and ≥3 months in 28% of patients. Risk factors for a very long diagnostic interval were female sex, age <70 years, or having a synovial sarcoma or chordoma.

Conclusions: The patient and diagnostic interval lengths were prolonged in a substantial percentage of this sarcoma survivorship population. Factors found to be associated with the length of the patient interval or the diagnostic interval differed. Creating awareness among (especially young) patients to consult a physician and awareness among physicians to consider a sarcoma diagnosis will contribute to optimization of the total interval.
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http://dx.doi.org/10.1002/cncr.33181DOI Listing
December 2020

Quality of Life in Patients With Hypoparathyroidism After Treatment for Thyroid Cancer.

J Clin Endocrinol Metab 2020 12;105(12)

Institute of Medical Biostatistics, Epidemiology and Informatics (IMBEI), University Medical Center Mainz, Mainz, Germany.

Purpose: Surgical complications such as hypoparathyroidism (HPT) or vocal cord palsy are seldom assessed when the quality of life (QOL) in thyroid cancer patients is investigated. The aim of this study was to measure the QOL difference in thyroid cancer survivors with and without HPT.

Methods: Participants for this analysis were enrolled in 13 countries from a study that pilot-tested a thyroid cancer-specific QOL instrument. They were included if they had been diagnosed with thyroid cancer at least 9 months previously. QOL was measured using the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Core (EORTC QLQ-C30) and some items on HPT symptoms (eg, tingling in fingers or toes). HPT status and other clinical data were extracted from the patients' medical charts. Comparisons of QOL domains between patients with and without HPT were performed using Mann-Whitney U test. The occurrence of HPT-related symptoms was compared using chi-square tests. Multiple ordinal regression analysis was performed to evaluate factors that might affect QOL.

Results: Eighty-nine patients participated in this study, 17 of whom were considered to have HPT. Patients in the HPT group reported significantly reduced QOL in 9 of the 15 scales of the EORTC QLQ-C30 compared to patients without HPT. Regression analysis showed that HPT was independently negatively associated with various scales of the QLQ-C30. Both groups showed a high prevalence of typical HPT symptoms.

Conclusion: Thyroid cancer patients with HPT report significantly impaired QOL compared to thyroid cancer survivors without HPT. The assessment of HPT should be considered when measuring QOL in thyroid cancer patients.
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http://dx.doi.org/10.1210/clinem/dgaa597DOI Listing
December 2020

Health-Related Quality of Life and Experiences of Sarcoma Patients during the COVID-19 Pandemic.

Cancers (Basel) 2020 Aug 14;12(8). Epub 2020 Aug 14.

The Royal Marsden NHS Foundation Trust, London SW3 6JJ, UK.

Sarcomas are rare cancers with a spectrum of clinical needs and outcomes. We investigated care experiences and health-related quality of life (HRQoL) in sarcoma patients during the COVID-19 pandemic. Patients with appointments during the first two months of the UK lockdown were invited to complete a survey. Questions included views on care modifications, COVID-19 worry and psychosocial impact, and EORTC-QLQ-C30 items. 350 patients completed the survey; median age 58 (16-92) years. Care modifications included telemedicine (74%) and postponement of appointments (34%), scans (34%) or treatment (10%). Most felt the quality of care was not affected (72%), however, social life (87%) and emotional wellbeing (41%) were affected. Worry about COVID-19 infection was moderately high (mean 5.8/10) and significantly related to higher cancer-related worry; associated with lower emotional functioning irrespective of treatment intent. Curative patients (44%) with low resilient coping scores had significantly higher COVID-19 worry. Patients who did not know their treatment intent (22%) had significantly higher COVID-19 worry and insomnia. In summary, care experiences were generally positive; however, cancer-related worry, low resilient coping and uncertainty about treatment intent were associated with COVID-19 worry. These patients may benefit from additional psychological support during the pandemic and beyond.
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http://dx.doi.org/10.3390/cancers12082288DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7547383PMC
August 2020
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