Health-Related Quality of Life in adolescent survivors of burns: Agreement on self-reported and mothers’ and fathers’ perspectives

Pan, Raquel; Egberts, Marthe R.; Nascimento, Lucila Castanheira; Rossi, Lídia Aparecida; Vandermeulen, Els; Geenen, Rinie; Loey, Nancy E. Van

doi:10.1016/j.burns.2014.12.011

Cited by 24 publications

(11 citation statements)

References 23 publications

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“…Previous research in healthy children showed that paternal and maternal proxy HRQoL reports were interchangeable [12]. Moreover, in a sample of adolescent burn survivors as well as in children and adolescents in outpatient psychotherapy treatment, moderate to high agreement was found in proxy HRQoL reports of parent-dyads [30,31]. However, to our knowledge, no previous studies have been performed on this subject in pediatric oncology.…”

Section: Main Findings and Implicationsmentioning

confidence: 78%

Determinants of health-related quality of life proxy rating disagreement between caregivers of children with cancer

et al. 2019

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Purpose Proxy reports of health-related quality of life (HRQoL) are commonly used in pediatric oncology. However, it is not known if caregivers' reports differ. This study therefore aims to compare paternal and maternal proxy reports, and explore determinants of couple disagreement (sociodemographic and medical characteristics, and parental QoL and distress). Methods Both parents completed the PedsQL generic (child's HRQoL), Short Form-12 (own QoL) and Distress Thermometer for Parents. To assess agreement in child HRQoL, intra-class correlation coefficients (ICCs) were calculated. Differences between fathers/mothers were assessed with paired t tests. Systematic disagreement patterns were visualized with Bland-Altman plots. Characteristics of parental couples with a mean proxy difference in the highest quartile (highest proxy score minus lowest proxy score) were explored with multiple logistic regression analysis. Results Parents of 120 children with cancer (87% post-treatment, mean age 11.0 ± 5.7 years) participated. No significant differences were found between paternal and maternal proxy scores, and agreement was good on all scales (ICCs 0.65-0.83). Bland-Altman plots revealed no systematic disagreement patterns, but there was a wide range in magnitude of the differences, and differences went in both directions. Couples with a mean proxy difference (irrespective of which direction) in the highest quartile (± 20 points) were more likely to have a child in active treatment, with retinoblastoma or relapsed disease, and to diverge in their own QoL. Conclusions If proxy reports of only one parent are available, clinicians may reasonably assume that paternal and maternal reports are interchangeable. However, if in doubt, respondent's sex is not of major importance, but clinicians should be aware of patient's and family's characteristics.

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Section: Main Findings and Implicationsmentioning

confidence: 78%

Determinants of health-related quality of life proxy rating disagreement between caregivers of children with cancer

et al. 2019

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“…A limitation of our study is that, in young children, the questionnaires and assessment may more likely reflect the parents’ perception rather than the child’s perception as previously reported by Pan et al [20]. Nevertheless despite this limitation, it is important to point out that, in cases where parental help was needed to answer the questionnaires, we made every attempt to ensure that the questionnaires were filled out with consideration of the child’s own perception.…”

Section: Discussionmentioning

confidence: 91%

Two-year follow-up of outcomes related to scarring and distress in children with severe burns

Wurzer

Forbes

Hundeshagen

et al. 2016

Disability and Rehabilitation

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Purpose We assessed the perception of scarring and distress by pediatric burn survivors with burns covering more than one-third of total body surface area (TBSA) for up to 2 years post-burn. Methods Children with severe burns were admitted to our hospital between 2004 and 2012, and consented to this IRB-approved-study. Subjects completed at least one Scars Problems and/or Distress questionnaire between discharge and 24 months post burn. Outcomes were modeled with generalized estimating equations or using mixed linear models. Significance was accepted at p<0.01. Results Responses of 167 children with a mean age of 7±5 years and burns covering an average 54±14% of TBSA were analyzed. Significant improvements over the 2-year period were seen in reduction of pain, itching, sleeping disturbance, tightness, range of motion, and strength (p<0.01). There was a significantly increased persistent desire to hide the scarred body areas over time (p<0.01). The perception of mouth scarring, inability to portray accurate facial expressions, and skin coloration did not improve over the follow-up period. Conclusions According to self-assessment questionnaires, severely burned children exhibit significant improvements in their overall perception of scarring and distress. However, these patients remain self-conscious with respect to their body image even 2 years after burn injury.

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“…This study has demonstrated that burns patients experience a wide range of concerns relating to their physical and functional well-being. Concerns raised by the majority of patients such as pain, itch, sleep and increased sensitivity are well described in the literature 4 31–36. Concerns that were less prevalent however, are not well described.…”

Section: Discussionmentioning

confidence: 99%

Identifying patient concerns during consultations in tertiary burns services: development of the Adult Burns Patient Concerns Inventory

Gibson¹,

Yarrow

Brown

et al. 2019

BMJ Open

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ObjectivesIdentifying the issues and concerns that matter most to burns survivors can be challenging. For a number of reasons, but mainly relating to patient empowerment, some of the most pressing concerns patients may have during a clinical encounter may not naturally be the focal point of that encounter. The Patient Concerns Inventory (PCI) is a tried and tested concept initially developed in the field of head and neck cancer that empowers patients during a clinical encounter through provision of a list of prompts that allows patients to self-report concerns prior to consultation. The aim of this study was to develop a PCI for adult burns patients.DesignContent for the PCI was generated from three sources: burns health-related quality of life tools, thematic analysis of one-to-one interviews with 12 adult burns patients and 17 multidisciplinary team (MDT) members. Content was refined using a Delphi consensus technique, with patients and staff members, using SurveyMonkey.SettingWithin outpatient secondary care.ParticipantsTwelve adult burns patients and MDT members from two regional burns centres.ResultsA total of 111 individual items were generated from the three sources. The Delphi process refined the total number of items to 58. The main emergent domains were physical and functional well-being (18 items), psychological, emotional and spiritual well-being (22 items), social care and social well-being (7 items) and treatment-related concerns (11 items).ConclusionsThe Adult Burns Patient Concerns Inventory is a 58-item, holistic prompt list, designed to be used in the outpatient clinic. It offers a new tool in burn care to improve communication between healthcare professionals and patients, empowering them to identify their most pressing concerns and hence deliver a more focused and targeted patient-centred clinical encounter.

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Health-Related Quality of Life in adolescent survivors of burns: Agreement on self-reported and mothers’ and fathers’ perspectives

Cited by 24 publications

References 23 publications

Determinants of health-related quality of life proxy rating disagreement between caregivers of children with cancer

Determinants of health-related quality of life proxy rating disagreement between caregivers of children with cancer

Two-year follow-up of outcomes related to scarring and distress in children with severe burns

Identifying patient concerns during consultations in tertiary burns services: development of the Adult Burns Patient Concerns Inventory

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