Trending Longitudinal Agreement Between Parent And Child Perceptions Of Quality Of Life For Pediatric Palliative Care Patients
Creator
Weaver M; Darnall C; Bace S; Vail C; Macfadyen A; Wichman C
Identifier
10.3390/children4080065
Publisher
Children (basel)
Date
2017
Subject
Patient Reported Outcomes; Pediatric Palliative Care; Quality Of Life
Description
Pediatric palliative care studies often rely on proxy-reported instead of direct child-reported quality of life metrics. The purpose of this study was to longitudinally evaluate quality of life for pediatric patients receiving palliative care consultations and to compare patient-reported quality of life with parent perception of the child's quality of life across wellness domains. The 23-item PedsQL V4.0 Measurement Model was utilized for ten child and parent dyads at time of initial palliative care consultation, Month 6, and Month 12 to assess for physical, emotional, social, and cognitive dimensions of quality of life as reported independently by the child and by the parent for the child. Findings were analyzed using Bland-Altman plots to compare observed differences to limits of agreement. This study revealed overall consistency between parent- and child-reported quality of life across domains. Physical health was noted to be in closest agreement. At the time of initial palliative care consult, children collectively scored their social quality of life higher than parental perception of the child's social quality of life; whereas, emotional and cognitive quality of life domains were scored lower by children than by the parental report. At the one year survey time point, the physical, emotional, and social domains trended toward more positive patient perception than proxy perception with congruence between quality of life scores for the cognitive domain. Findings reveal the importance of eliciting a child report in addition to a parent report when measuring and longitudinally trending perceptions on quality of life.
Rights
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Citation List Month
October 2017 List
Notes
Weaver, Meaghann S Darnall, Cheryl Bace, Sue Vail, Catherine MacFadyen, Andrew Wichman, Christopher Journal Article Switzerland Children (Basel). 2017 Aug 1;4(8). pii: E65. doi: 10.3390/children4080065.
Pediatric Palliative Care Needs Assessments: From Paper Forms To Actionable Patient Care
Creator
Weaver M; Schroeder D; Wichman C; Bace S; Vail C; Macfadyen A
Identifier
10.1089/jpm.2016.0507
Publisher
Journal Of Palliative Medicine
Date
2017
Rights
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Pediatric Palliative Care Needs Assessments: From Paper Forms To Actionable Patient Care
Creator
Weaver M; Schroeder D; Wichman C; Bace S; Vail C; Macfadyen A
Publisher
Journal Of Palliative Medicine
Date
2017
Rights
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Quality of Life; palliative therapy; Child; Longitudinal Studies; Only Child; Palliative Care; major clinical study; statistical significance; longitudinal study; prospective study; child; attention; human; female; male; quality of life; article; diagnosis; analysis of variance; daily life activity; Metronidazole; minimal clinically important difference; physical model
Description
Background: One goal of pediatric palliative care is to maintain quality of life for children and their families. Quality-of-life investigations may be enhanced by considering clinically important metrics in addition to statistical significance. Objective: The purpose of this study was to longitudinally evaluate the effect of time on quality of life and family impact for pediatric palliative care patients across all diagnoses and ages. Design: This prospective quality-of-life study included administration of a 23-item PedsQLTM Measurement Model to evaluate for physical, emotional, social, and cognitive dimensions of the child's quality of life and a 36-item PedsQL Family Impact Module to assess for the familial impact at time of initial palliative care consultation, Month 6, and Month 12. Setting/Subjects: All pediatric patients who received a palliative care consultation in our Midwestern free-standing children's hospital over a five-year period were included in the longitudinal study (n = 87). Measurements: Repeated measures ANOVA was used to investigate how proxy-reported quality of life and family impact changed with time with attentiveness to also follow trends in minimal clinically important difference (MCID) metrics. Results: The emotional domain showed a statistically significant positive trend over the first six months of palliative care involvement (p = 0.049), while the physical domain (p = 0.028) and daily activity (p = 0.039) showed a positive improvement for the full year. In using a standard of MCID, the physical, emotional, and cognitive domains improved in the quality-of-life scale and the communication, worry, and daily activity domains improved in the family impact scale over 12 months. Conclusions: In considering quality-of-life analyses for pediatric palliative care programmatic improvements, providers may consider analyzing not only for statistical significance in collective data sets but also for clinically important difference over time.
Rights
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
The national nursing shortage translates into a gap in home nursing care available to children with complex, chronic medical conditions and their family caregivers receiving palliative care consultations. A total of 38 home health nursing surveys were completed by families receiving pediatric palliative care consultation services at a freestanding children's hospital in the Midwest. The gap in the average number of nursing hours allotted versus received was 40 h/wk per family, primarily during evening hours. Parents missed an average of 23 hours of employment per week to provide hands-on nursing care at home, ranking stress regarding personal employment due to nursing shortage at 6.2/10. Families invested an average of 10 h/mo searching for additional nursing coverage and often resorted to utilizing more than 6 different home nurse coverage personnel per month. Families reported multiple delays to hospital discharges (mean, 15 days per delay) due to inability to find home nursing coverage. Respiratory technology and lack of Medicaid coverage (P < .02) correlated with the gap in home nursing access. This study examines how the pediatric home nursing shortage translates into a lived experience for families with children with complex medical conditions receiving palliative care.
Rights
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).