Self-perception and quality of life in adolescents during treatment for a primary malignant bone tumour

Riel, Christel A.H.P. van; Bergh, Esther E.M. Meijer-van den; Kemps, Hennie L.M.; Feuth, Ton; Schreuder, H.W.B.; Hoogerbrugge, Peter M.; Groot, I. de; Mavinkurve‐Groothuis, Annelies M. C.

doi:10.1016/j.ejon.2014.01.005

Cited by 21 publications

(21 citation statements)

References 35 publications

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“… 14 Predictive factors for perceiving life quality after sarcoma diagnosis described in the literature are gender, physical status and achievement potential. 2 , 3 , 15 Better physical status is associated with a stable emotional situation, as we were able to confirm in our study. Another factor that influences the emotional status of patients after sarcoma diagnosis is the prognosis of the disease and the trust in treatment processes.…”

Section: Discussionsupporting

confidence: 80%

Quality of life, physical and mental status and contentment of patients with localized soft tissue or bone sarcoma: a questionnaire analysis

2015

Orthop Rev

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Extremity soft tissue and bone sarcomas represent a rare group of bone and connective tissue cancers. In literature, there is little information about psycho-emotional status and impact on quality of life after the diagnosis and treatment of this kind of tumors. The aim of this survey was to define the profile of the patients at risk and their need for psychooncological care. Our self-created questionnaire consists of 71 items related to the individual emotional, mental and physical situation after the diagnosis of soft tissue and bone sarcoma. Sixty-six patients, surgically treated at our department, were included. Only 37.5% of the patients considered themselves to be completely emotional stable. Psychooncological treatment was accepted mostly by female patients, by patients with higher education level and by married patients. Emotional stability and confidence in future were associated with a strong familiar background, with numerous consultations of psychooncological service and also to gender and physical condition. Current quality of life was strongly correlated to physical condition. Thanks to our questionnaire, we disclosed few risk factors for negative emotional outcome after therapy, such as higher age, social isolation, female gender and poor physical status.

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Section: Discussionsupporting

confidence: 80%

Quality of life, physical and mental status and contentment of patients with localized soft tissue or bone sarcoma: a questionnaire analysis

2015

Orthop Rev

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“…As expected, children, adolescents, and young adults diagnosed with bone sarcomas generally report lower levels of health-related quality of life (HRQoL) after surgery compared with the general population, within the domains of physical functioning and overall well-being [8-10]. In addition to physical functioning, patients receiving treatment for a high-grade bone sarcoma also show significantly poorer social functioning [8,10]. This includes lower levels of autonomy and independence when compared with matched healthy peers [8].…”

Section: Introductionmentioning

confidence: 91%

“…The impact on QoL is a further concern as the majority of patients are diagnosed during adolescence and young adulthood, a crucial time for achieving developmental milestones. As expected, children, adolescents, and young adults diagnosed with bone sarcomas generally report lower levels of health-related quality of life (HRQoL) after surgery compared with the general population, within the domains of physical functioning and overall well-being [8-10]. In addition to physical functioning, patients receiving treatment for a high-grade bone sarcoma also show significantly poorer social functioning [8,10].…”

Section: Introductionmentioning

confidence: 97%

“…The 5-year survival rate has improved especially for patients aged younger than 25 years [6]. Bone sarcomas and their treatments have a direct impact on organ function, activities of daily life, mobility, and quality of life (QoL), including emotional and physical well-being [5,7,8]. The impact on QoL is a further concern as the majority of patients are diagnosed during adolescence and young adulthood, a crucial time for achieving developmental milestones.…”

Section: Introductionmentioning

confidence: 99%

“…In addition to physical functioning, patients receiving treatment for a high-grade bone sarcoma also show significantly poorer social functioning [8,10]. This includes lower levels of autonomy and independence when compared with matched healthy peers [8]. The intensive treatment regime as for high-grade bone sarcoma can also compromise QoL [11].…”

Section: Introductionmentioning

confidence: 99%

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Quality of Life of Patients With Osteosarcoma in the European American Osteosarcoma Study-1 (EURAMOS-1): Development and Implementation of a Questionnaire Substudy

Calaminus¹,

Jenney²,

Hjorth³

et al. 2019

JMIR Res Protoc

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BackgroundThe quality of life (QoL) of patients with osteosarcoma (OS) may be adversely affected by the disease or its treatment. Therefore, it is important to understand the QoL of patients undergoing treatment for OS to improve the QoL. We report on the first prospective international QoL study that was embedded within a large randomized clinical trial from 4 national study groups.ObjectiveThis paper aimed to describe the QoL study development, methodology, accrual details, and characteristics of the QoL cohort.MethodsA total of 2260 patients registered in the EURopean AMerican Osteosarcoma Study-1 (EURAMOS-1), of whom 97.92% (2213/2260) were eligible for the optional QoL assessment and could participate in terms of questionnaire availability. Overall, 61.86% (1369/2213) of patients and/or proxies completed the QoL evaluation at the first assessment time point (E1) after the start of preoperative treatment. The QoL measures used (self- and/or proxy reports) depending on the patient’s age and national study group. Participants and nonparticipants in the ancillary QoL study were compared regarding relevant demographic and disease-related characteristics at registration in the trial.ResultsThe participation rate at time point E1 did not differ with regard to age, gender, the occurrence of pathological fracture, or the presence of any metastases at diagnosis. No differences were found regarding the primary tumor site. Only the national study group affiliation had an influence on participation. Participation decreased linearly with trial progress up to 20% at the final time point of QoL assessment.ConclusionsThis study demonstrates the feasibility of international cooperation for the purpose of assessing and understanding the QoL of pediatric and adolescent/young adult patients with cancer. Future outcomes of this QoL substudy will help to adapt interventions to improve QoL.

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Psychosocial Issues in Children with Cancer: The Role of Patient Advocacy and Its Impact on Care

Sardi-Brown

Kupst

Brown

et al. 2017

Sarcoma

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Self-perception and quality of life in adolescents during treatment for a primary malignant bone tumour

Cited by 21 publications

References 35 publications

Quality of life, physical and mental status and contentment of patients with localized soft tissue or bone sarcoma: a questionnaire analysis

Quality of life, physical and mental status and contentment of patients with localized soft tissue or bone sarcoma: a questionnaire analysis

Quality of Life of Patients With Osteosarcoma in the European American Osteosarcoma Study-1 (EURAMOS-1): Development and Implementation of a Questionnaire Substudy

Psychosocial Issues in Children with Cancer: The Role of Patient Advocacy and Its Impact on Care

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