Patient-Reported Outcomes in Pediatric Oncology: The Voice of the Child

Tomlinson, Deborah; Yuan, Changrong; Cheng, Lei; Hinds, Pamela S.

doi:10.1007/978-3-030-25804-7_7

Cited by 4 publications

(9 citation statements)

References 90 publications

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“…So I know what’s going on …” a From Avoine-Blondin et al (2017). Palliative and Supportive Care, 15 [ 5 ], 565–574. PMID: 28137343 …”

Section: Resultsmentioning

confidence: 99%

“…Although some changes were needed to clarify its content and adjust the timeframe, it was perceived as easy to use. Advance QoL meets the need for a brief and pertinent assessment tool of QoL in patients with advanced cancer [ 1 , 5 ]. Its brevity as well as its radar chart summary provide a quick overview of the respondent’s perception about the patient’s QoL, with minimal burden on the respondent.…”

Section: Discussionmentioning

confidence: 99%

“…In addition, consistent with multi-informant assessment strategies, it is paramount to collect reports from both the family and professionals as perceptions may be quite different [ 35 ]. These differences may constitute an invaluable source for confirming patients’ status and defining future targets of care [ 5 , 36 , 37 ]. Recent guidelines and priorities have indeed insisted on improving communication and information sharing among clinical teams, patients, and families [ 1 , 38 ].…”

Section: Discussionmentioning

confidence: 99%

“…For some children, existing cancer-focused treatments may reveal ineffective, and the illness becomes an "advanced cancer", a critical state experienced by tens of thousand of young people in North America [2]. In such context of uncertainty, children and their family see their daily lives disrupted and their overall quality of life (QoL) widely affected [2][3][4][5].…”

Section: Introductionmentioning

confidence: 99%

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Quality of life in childhood advanced cancer: from conceptualization to assessment with the Advance QoL tool

et al. 2022

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Background Advanced childhood cancer, a condition with no available cancer-focused treatment options, greatly impacts Quality of Life (QoL). We need appropriate assessment strategies to select adapted treatment targets, improve care and optimize communication. Our first goal was to identify the domains of patients’ QoL by combining for the first time the perspectives of patients and parents with previously collected reports in professionals. Our second goal was to develop a simple QoL assessment tool and optimize its format and content for use in the childhood advanced cancer population. Methods To identify QoL domains, we conducted qualitative interviews with 7 young patients (4 girls, 3 boys, aged 13 ± 4 yrs) and 9 parents (7 mothers, 2 fathers) from our treatment centre. We used inductive thematic content analysis to code and categorize respondents’ viewpoints. The first version of the tool (Advance QoL) was then drafted, and structured feedback was collected through interviews and a survey with 15 experts. We computed content validity indices. Results Apart from the physical, psychological, and social domains, participants insisted on four original themes: autonomy, pleasure, the pursuit of achievement, and the sense of feeling heard. This was in line with the categories found in a preliminary study involving professionals (PMID: 28137343). Experts evaluated the tool as clear, relevant, acceptable, and usable. They formulated recommendations on instructions, timeframe, and item formulations, which we implemented in the refined version. Conclusions Advance QoL is an innovative tool targeting key life domains in childhood advanced cancer. It is focused on preserved abilities and targets of care. The refined version is appropriate for adult respondents within families and professionals. Future studies will develop versions for young ages to collect the experience of patients themselves. This will open on future reliability, validity, sensitivity, and implementation studies.

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“…So I know what’s going on …” a From Avoine-Blondin et al (2017). Palliative and Supportive Care, 15 [ 5 ], 565–574. PMID: 28137343 …”

Section: Resultsmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Quality of life in childhood advanced cancer: from conceptualization to assessment with the Advance QoL tool

et al. 2022

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“…The importance of having the child's voice during cancer treatment has been widely recognized (Reeve et al, 2017; Tomlinson et al, 2020). Although children as young as 5 years have been recognized as being able to express some of their subjective experiences (Matza et al, 2013), concerns exist around young patients’ verbal, cognitive and developmental abilities regarding self-reports (Germain et al, 2019; Huang et al, 2014).…”

Section: Introductionmentioning

confidence: 99%

The Experiences of Chinese Children 5- to 7-year-old during Cancer Treatment Reflected Through Interviews and Drawings

Cheng

Zhao

et al. 2021

Journal of Pediatric Hematology/Oncology Nursing

Self Cite

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Background: For children with cancer, the experience during treatment can be challenging. There is a limited number of studies on self-reported treatment experiences of younger Chinese children with cancer using qualitative methods. Objectives: This study aimed at exploring the experience of Chinese children aged 5 to 7 years during cancer treatment reflected through interviews and drawings. Methods: This study used a descriptive qualitative design with the technique of “draw-and-tell.” Participants were enrolled from the pediatric oncology inpatient department of one national children's medical center in China. They were asked to draw a picture of “your feelings in the hospital.” An inductive content analysis approach was used. Results: Twelve participants were enrolled (8 male, mean age 5.7 years). Four themes were established: (1) suffering from adverse treatment effects; (2) perceiving changed relationships; (3) being thankful for others; and (4) trying out coping strategies. Conclusion: Chinese children aged 5 to 7 years expressed multiple cancer treatment impacts. They appreciated others’ support and had their own way to cope with treatment demands. The authors also extended the dynamic nature of using the “draw-and-tell” methodology. Study findings highlight the importance of inviting and hearing the voice of young children during their cancer treatment, with particular consideration of the influence of disease, treatment, child development, family dynamics, and culture.

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Influence of Pediatric Patients’ Developmental or Chronic Health Condition Status as a Predictor of Parents’ Perceptions of Patient- and Family-Centered Care

Brannon

Ray

Lark

et al. 2021

Health Communication

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Patient-Reported Outcomes in Pediatric Oncology: The Voice of the Child

Cited by 4 publications

References 90 publications

Quality of life in childhood advanced cancer: from conceptualization to assessment with the Advance QoL tool

Quality of life in childhood advanced cancer: from conceptualization to assessment with the Advance QoL tool

The Experiences of Chinese Children 5- to 7-year-old during Cancer Treatment Reflected Through Interviews and Drawings

Influence of Pediatric Patients’ Developmental or Chronic Health Condition Status as a Predictor of Parents’ Perceptions of Patient- and Family-Centered Care

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