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

Self Cite

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.

Section: Discussionmentioning

confidence: 99%

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

Drabbe

Grünhagen

Houdt

et al. 2021

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“…The other patient characteristics were similar between the location groups (Table 1). The non-responder analyses have been published before, indicating a younger age at diagnosis and at study enrolment, and a lower social-economic status (SES) for non-responders [19]. 1)…”

Section: Patient Characteristicsmentioning

confidence: 99%

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

Eck

Hollander

Desar

et al. 2020

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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 (N = 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.

“…This heterogeneity of the disease was also reflected in HRQoL outcomes in German sarcoma patients and survivors [34]. These data show that the development of a single instrument is challenging, and it may not be the best option to meet the needs of academia and industry to assess the impact of new treatments [15,35].…”

Section: Introductionmentioning

confidence: 98%

“…Despite the effectiveness of treatments for sarcoma, the varying degrees of long-lasting and cumulative treatment side-effects and morbidity in a substantial number of patients contribute negatively to their overall outcome [8,14,15]. Information on survival only is insufficient to determine the net clinical (or true) benefit of a treatment for patients, and subjective patient-reported outcomes (PROs), including health-related quality of life (HRQoL), should be considered as well.…”

Section: Introductionmentioning

confidence: 99%

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

Hollander

Fiore

Martin‐Broto

et al. 2020

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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 (n = 154) and healthcare professional (HCP) interviews (n = 30). Subsequently, another group of sarcoma patients (n = 475) and HCPs (n = 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.