ArticleQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2017
Quality of life of pediatric oncology patients: Do patient-reported outcome instruments measure what matters to patients?
Article in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 16 papers, 4 of them syntheses that pooled it.
What it found
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The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
16 citing papers in PubMed, 4 syntheses or guidelines pooled it.
- Children's and adolescents' perspectives on living with advanced cancer: A meta-synthesis of qualitative research.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2024Pooled it
- Updating our understanding of health-related quality of life issues in children with cancer: a systematic review of patient-reported outcome measures and qualitative studies.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2023Pooled it
- A critical evaluation of the content validity of patient-reported outcome measures assessing health-related quality of life in children with cancer: a systematic review.Journal of patient-reported outcomes · 2023Pooled it
- Health utilities in pediatric cancer patients and survivors: a systematic review and meta-analysis for clinical implementation.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2022Pooled it
- Children with cancer and their cardiorespiratory fitness and physical function-the long-term effects of a physical activity program during treatment: a multicenter non-randomized controlled trial.Journal of cancer survivorship : research and practice · 2025Trial
- Quality of life in pediatric oncology patients, caregivers and siblings after psychosocial screening: a randomized controlled trial.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2020Trial
- Understanding data visualization techniques in qualitative studies used to develop and validate patient-reported outcome measures: a targeted literature review.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2025Review
- Article
- Measuring Pediatric Palliative Care Quality: Challenges and Opportunities.Journal of pain and symptom management · 2023Article
- Involving children and adolescents with type 1 diabetes in health care: a qualitative study of the use of patient-reported outcomes.Journal of patient-reported outcomes · 2023Article
- A Review of Patient-Reported Outcome Measures in Childhood Cancer.Children (Basel, Switzerland) · 2022Review
- Playful strategies to foster the well-being of pediatric cancer patients in the Brazilian Unified Health System: a design thinking approach.BMC health services research · 2021Article
- How Do you Focus on Quality of Life When Kids Cannot Go to School or Outside?Current pediatrics reports · 2021Review
- Effects of a physical activity program from diagnosis on cardiorespiratory fitness in children with cancer: a national non-randomized controlled trial.BMC medicine · 2020Article
- Relationships Between Parental Anxiety and Child Quality of Life in Advanced Childhood Cancer.Journal of pediatric hematology/oncology nursingArticle
- Childhood Cancer Survivors: Self-Reported Quality of Life during and after the Cancer Trajectory.Asia-Pacific journal of oncology nursingArticle
Corrections and comments
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Authors and funding
6 authors.
Funding
Abstract
purposeThe assessment of quality of life (QOL) is key within pediatric oncology and requires a clearly defined construct of QOL. The purpose of our study was: (1) to conduct a qualitative study to inform the theoretical underpinnings of QOL and (2) to determine the appropriateness of patient-reported outcome (PRO) instruments to assess and evaluate QOL in pediatric cancer patients and survivors.
methodsThe study used an interpretative description approach. Children diagnosed with childhood cancer, aged 8-18 years, were recruited from four Canadian hospitals. Semi-structured interviews were completed, transcribed verbatim and coded through methods of constant comparison. In-depth analysis facilitated a comparison between emerging themes and the content of commonly used PRO instruments.
resultsThirty-seven children (19 females; 51 %) participated. The mean age was 13 years, and 19 (51 %) participants were post-treatment. Participant experiences reflected notions of positive and negative duality, including: maintaining physical functioning but longing for the ability to participate in activities; experiencing a new level of intimacy with family and friends amidst isolation; and developing positivity amidst anger, sadness and lingering worry. Analysis showed that existing PRO instruments are missing concerns specific to this population and contain content not reflective of the QOL experiences of childhood cancer patients and survivors.
conclusionsOur research highlights important problems with content validity of existing PRO scales, indicating that the tools we have to date have limited utility in research and clinical practice. The development of a new PRO instrument should be considered to ensure that content validity is achieved.
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