A Review of Patient-Reported Outcome Measures in Childhood Cancer

Horan, Madeline R.; Sim, Jin Ah; Krull, Kevin R.; Baker, Justin N.; Huang, I‐Chan

doi:10.3390/children9101497

Cited by 9 publications

(6 citation statements)

References 48 publications

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“…With the PedsQL scoring, the average score for each item in the subscales of both the child self-reports and the proxy reports were calculated and then converted to a 0–100 scale, with higher scores indicating better HRQOL. The PedsQL was chosen as measure as it is the currently most frequently used questionnaires in clinical research [ 31 ], and it has been recommended to be used in longitudinal pediatric oncology studies [ 32 ].…”

Section: Methodsmentioning

confidence: 99%

Disagreement between mothers' and fathers' rating of health-related quality of life in children with cancer

et al. 2023

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Purpose Serial assessment of health condition based on self-report made by children and their proxies has consistently shown a lack of congruence. The study explored the discrepancies between mother’s, father’s, and children’s reports on health-related quality of life (HRQOL) during the first two months of pediatric cancer treatment. Methods In this cohort study, children and parents completed the generic and cancer-specific Pediatric Quality-of-Life Inventory (PedsQL) questionnaires at initial diagnosis and in the subsequent months. Evaluation of discrepancies included intraclass correlations between mother–child and father–child dyads at different domain levels. Results Thirty-six children with a diagnosis of cancer between May 2020 and November 2021 and their parents were included in this study. At diagnosis, mother–child dyads showed better agreement on more domains of the PedsQL Generic Core Scale than father–child dyads; moderate agreement persisted for both parents at subsequent time points on the physical domain. The disease-specific PedsQL Cancer Module revealed moderate and better agreement for mother–child dyads during active cancer therapy. In particular, agreement of mother–child dyads was pronounced for domains such as worry (0.77 [95% CI 0.52–0.89, P < 0.001]), whereas fathers tended to overestimate the child’s symptom burden for most of the remaining domains of the PedsQL Cancer Module. Conclusion This cohort study shows that both parent proxy reports can provide valid information on child’s HRQOL, but that fathers tend to overestimate, particularly for non-observable domains. Proxy reports derived from mothers more closely agreed with children’s HRQOL and might be more weighted, if there is uncertainty between parents.

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Section: Methodsmentioning

confidence: 99%

Disagreement between mothers' and fathers' rating of health-related quality of life in children with cancer

et al. 2023

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“…9 Whilst there is a growing body of evidence on the use and implementation of PCOMs in adult palliative care, [1][2][3]10,11 evidence to underpin their use and implementation for children with life-limiting conditions is more limited, 2,[12][13][14] particularly outside of paediatric oncology. [15][16][17][18][19][20][21][22] Whilst there are several PCOMs (including both generic tools and condition specific measures) that have been developed, validated and implemented across paediatrics, [23][24][25] available generic tools (e.g. Paediatric Quality of Life Inventory 14,[26][27][28][29][30][31][32] ) do not reflect the concerns of all children with life-limiting conditions, and condition specific measures (e.g.…”

Section: Introductionmentioning

confidence: 99%

What are the anticipated benefits, risks, barriers and facilitators to implementing person-centred outcome measures into routine care for children and young people with life-limiting and life-threatening conditions? A qualitative interview study with key stakeholders

Scott,

Coombes,

Braybrook

et al. 2024

Palliat Med

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Background: There is a growing evidence-base underpinning implementation of person-centred outcome measures into adult palliative care. However evidence on how best to achieve this with children facing life-threatening and life-limiting conditions is limited. Aim: To identify the anticipated benefits, risks, barriers and facilitators to implementing person-centred outcome measures for children with life-limiting and life-threatening conditions. Design: Cross-sectional qualitative semi-structured interview study with key stakeholders analysed using Framework analysis informed by the adapted-Consolidated Framework for Implementation Research. Setting/participants: A total of n = 26 children with life-limiting or life-threatening conditions, n = 40 parents/carers, n = 13 siblings and n = 15 health and social care professionals recruited from six hospitals and three children’s hospices and n = 12 Commissioners of health services. Results: All participants were supportive of future implementation of person-centred outcome measures into care. Anticipated benefits included: better understanding of patient and family priorities, improved communication and collaborative working between professionals and families and standardisation in data collection and reporting. Anticipated risks included increased workload for staff and measures not being used as intended. Implementation barriers included: acceptability and usability of outcome measures by children; burden and capacity of parents/carers regarding completion; privacy concerns; and language barriers. Implementation facilitators included designing measures using language that is meaningful to children and families, ensuring potential benefits of person-centred outcome measures are communicated to encourage ‘buy-in’ and administering measures with known and trusted professional. Conclusions: Implementation of person-centred outcome measures offer potential benefits for children with life-limiting and life-threatening conditions. Eight recommendations are made to maximise benefits and minimise risks in implementation.

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“…7,8 Between 2007 and 2020, only 21% of trials included measurement of PROs as a secondary or exploratory endpoint. 9,10 The most generic PROs used in paediatrics are Health Utilities Index (HUI), Paediatric Quality of Life Inventory and European Quality of Life-5 Dimensions. 6 Different paediatric oncology guidelines have been published to facilitate the correct use of these Patient-Reported Outcomes Measurement (PROMs) depending on the patient's situation.…”

Section: Introductionmentioning

confidence: 99%

Incorporation of patient‐reported outcomes in early‐phase clinical trials for childhood and adolescent cancer

Vilaplana,

Morell,

Valero‐Arrese

et al. 2024

Pediatric Blood & Cancer

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IntroductionThe assessment of quality of life (QoL) should be one of the main objectives in paediatric clinical trials. Even though researchers, regulators and advocates support the use of patient‐reported outcomes (PROs), this has not been fully implemented. The aim of this study is to assess the measurement of QoL and the usage of PROs, palatability assessments and medication diaries in early‐phase clinical trials for childhood and adolescent cancer.MethodsEarly‐phase clinical trials for children and adolescents with cancer opened between 2005 and 2022 at the Royal Marsden Hospital (London, UK) and Vall d'Hebron University Hospital (Barcelona, Spain) were interrogated for trial characteristics and the use of QoL questionnaires, PROs, palatability assessments and medication diaries.ResultsOverall, 72 clinical trials were analysed: 12 (16.7%) evaluated QoL and eight (11.1%) evaluated PROs. Palatability was tested in 21/40 (52.5%) trials of oral drugs and 23/72 (31.9%) incorporated medication diaries. No studies mentioned patient involvement in the trial protocol. Use of PROs increased from one of 36 (2.8%) to seven of 36 (19.4%) between the first period (2005–2016) and the second period (2017–2022) (p = .02). Implementation of medication diaries increased from seven of 36 (19.4%) to 16/36 (44.4%) in each period, respectively (p = .02).ConclusionOnly a minor proportion of the international/multicentric early‐phase trials evaluated included QoL/PROs and medication diaries or palatability questionnaires to help assess these, although this trend seems to be increasing over recent years. Greater implementation of QoL/PROs has the potential to improve the patient's wellbeing and facilitate symptom control, to enhance patient/parent involvement in future trial designs and to provide information for drug prioritisation.

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A Review of Patient-Reported Outcome Measures in Childhood Cancer

Cited by 9 publications

References 48 publications

Disagreement between mothers' and fathers' rating of health-related quality of life in children with cancer

Disagreement between mothers' and fathers' rating of health-related quality of life in children with cancer

What are the anticipated benefits, risks, barriers and facilitators to implementing person-centred outcome measures into routine care for children and young people with life-limiting and life-threatening conditions? A qualitative interview study with key stakeholders

Incorporation of patient‐reported outcomes in early‐phase clinical trials for childhood and adolescent cancer

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