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The Perceived Impact of Length of the Diagnostic Pathway Is Associated with Health-Related Quality of Life of Sarcoma Survivors: Results from the Dutch Nationwide SURVSARC Study.

ABSTRACT: BACKGROUND:Sarcoma patients often experience a long time to diagnosis, known as the total interval. This interval can be divided into the patient (time from symptoms to doctor consultation) and diagnostic intervals (time from first consultation to diagnosis). In other cancers, a long total interval has been associated with worse outcomes, but its effect on health-related quality of life (HRQoL) has never been investigated among sarcoma patients. This study investigates the association between (1) the actual time to diagnosis and HRQoL; (2) the perceived impact of the diagnostic interval length and HRQoL; (3) the actual length and perceived impact of the length and the HRQoL of sarcoma survivors. METHODS:A cross-sectional study was performed among sarcoma patients aged ?18, diagnosed 2-10 years ago in the Netherlands. The participants completed a questionnaire on HRQoL, the time to diagnosis, the perceived impact of the diagnostic interval on HRQoL, and coping. RESULTS:1099 participants were included (response rate, 58%). The mean time since diagnosis was 67.4 months. More than half reported a patient (60%) or diagnostic interval (55%) ?1 month. A third (31%) perceived a negative impact of the diagnostic interval length on HRQoL. Patient or diagnostic interval length was not associated with HRQoL. By contrast, participants perceiving a negative impact (32%) had lower HRQoL scores than those perceiving a positive (11%) or no impact (58%) (p = 0.000). This association remained significant in a multivariable model, in which maladaptive coping strategies and tumour characteristics were also found to be associated with HRQoL. Participants perceiving a negative impact of the length of the diagnostic interval related this to high psychological distress levels, more physical disabilities, and worse prognosis. CONCLUSION:The perceived impact of the diagnostic interval length was associated with the HRQoL of sarcoma survivors, whereas the actual length was not associated with HRQoL. Maladaptive coping strategies were independently associated with HRQoL. This offers opportunities for early intervention to improve HRQoL.

SUBMITTER: Soomers VLMN

PROVIDER: S-EPMC7465613 | biostudies-literature | 2020 Jul

REPOSITORIES: biostudies-literature

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The Perceived Impact of Length of the Diagnostic Pathway Is Associated with Health-Related Quality of Life of Sarcoma Survivors: Results from the Dutch Nationwide SURVSARC Study.

Soomers Vicky L M N VLMN Desar Ingrid M E IME van de Poll-Franse Lonneke V LV van de Sande Michiel A J MAJ de Haan Jacco J JJ Verhoef Cornelis C Vriens Ingeborg J H IJH van Houdt Winan J WJ Bonenkamp Johannes J JJ van der Graaf Winette T A WTA Husson Olga O

Cancers 20200728 8

<h4>Background</h4>Sarcoma patients often experience a long time to diagnosis, known as the total interval. This interval can be divided into the patient (time from symptoms to doctor consultation) and diagnostic intervals (time from first consultation to diagnosis). In other cancers, a long total interval has been associated with worse outcomes, but its effect on health-related quality of life (HRQoL) has never been investigated among sarcoma patients. This study investigates the association be ...[more]

PMID: 32731426

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Project description: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.

Project description:ObjectiveIn Bangladesh, the factors that contribute to the reduced quality of life were not systematically investigated in long-term stroke survivors, and only a few studies have used preference-based measures to assess the quality of life. We sought to assess the quality of life in stroke survivors who comprise physical health status, psychological state, social relationship, and surrounding environment of the stroke patients.MethodsThe quality of life among stroke patients was assessed with a semi-structured questionnaire using the validated Bangla Version of the World Health Organization, Quality-of-Life scale among the patients who survived beyond 28 days of first-ever stroke occurrence presenting in the Department of Physical Medicine and Rehabilitation, Bangabandhu Sheikh Mujib Medical University in the period between November 2020 and October 2021.ResultsOf the 77 patients who were identified as post-stroke patients, the mean score of overall quality of life (as assessed by Q1 and scored in a range of 1-5) was 3.14 ± 1.08. The mean scores of quality of life were highest for the psychological domain (51.18 ± 19.73) followed by environmental (52.08 ± 13.13), social (45.62 ± 22.73), and physical domains (37.18 ± 18.56). According to the classification of the Bangla Version of the World Health Organization, Quality-of-Life, 75.3% had a low physical quality of life, 37.7% had a low psychological quality of life, 53.2% had a low social quality of life, and 53.2% had a moderate environmental quality of life. The average scores for the physical, psychological, social, and environmental domains were notably lower in stroke survivors with comorbid chronic conditions such as hypertension, diabetes, heart disease, asthma or chronic obstructive pulmonary disease, obesity, and ischemic heart disease in comparison to those without such conditions.ConclusionIn our study, post-stroke patients with lower quality of life were associated with factors such as female gender, lower level of education, urban dwellers, and chronic diseases.

Project description:IntroductionThis study aims to investigate the health-related quality of life and coping strategies among COVID-19 survivors in Bangladesh.MethodsThis is a cross-sectional study of 2198 adult, COVID-19 survivors living in Bangladesh. Data were collected from previously diagnosed COVID-19 participants (confirmed by an RT-PCR test) via door-to-door interviews in the eight different divisions in Bangladesh. For data collection, Bengali-translated Brief COPE inventory and WHO Brief Quality of Life (WHO-QoLBREF) questionnaires were used. The data collection period was from October 2020 to March 2021.ResultsMales 72.38% (1591) were more affected by COVID-19 than females 27.62% (607). Age showed significant correlations (p<0.005) with physical, psychological and social relationships, whereas gender showed only a significant correlation with physical health (p<0.001). Marital status, occupation, living area, and co-morbidities showed significant co-relation with all four domains of QoL (p<0.001). Education and affected family members showed significant correlation with physical and social relationship (p<0.001). However, smoking habit showed a significant correlation with both social relationship and environment (p<0.001). Age and marital status showed a significant correlation with avoidant coping strategies (p<0.001); whereas gender and co-morbidities showed a significant correlation with problem-focused coping strategies (p<0.001). Educational qualification, occupation and living area showed significant correlation with all three coping strategies(p<0.001).ConclusionSurvivors of COVID-19 showed mixed types of coping strategies; however, the predominant coping strategy was avoidant coping, followed by problem-focused coping, with emotion-focused coping reported as the least prevalent. Marital status, occupation, living area and co-morbidities showed a greater effect on QoL in all participants. This study represents the real scenario of nationwide health-associated quality of life and coping strategies during and beyond the Delta pandemic.

Dataset Information

The Perceived Impact of Length of the Diagnostic Pathway Is Associated with Health-Related Quality of Life of Sarcoma Survivors: Results from the Dutch Nationwide SURVSARC Study.

Publications

The Perceived Impact of Length of the Diagnostic Pathway Is Associated with Health-Related Quality of Life of Sarcoma Survivors: Results from the Dutch Nationwide SURVSARC Study.

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