scholarly journals Discordance between pediatric self‐report and parent proxy‐report symptom scores and creation of a dyad symptom screening tool (co‐SSPedi)

2020 ◽  
Vol 9 (15) ◽  
pp. 5526-5534 ◽  
Author(s):  
Deborah Tomlinson ◽  
Erin Plenert ◽  
Grace Dadzie ◽  
Robyn Loves ◽  
Sadie Cook ◽  
...  
Keyword(s):  
Screening Tool ◽  
Self Report ◽  
Proxy Report ◽  
Symptom Screening ◽  
Parent Proxy Report ◽  
Symptom Scores ◽  
Report Symptom ◽  
Parent Proxy

scholarly journals Quality of life in Hungarian patients with cystic fibrosis

2013 ◽  
Vol 154 (20) ◽  
pp. 784-791 ◽  
Author(s):  
Réka Bodnár ◽  
Klára Holics ◽  
Rita Ujhelyi ◽  
László Kádár ◽  
Lajos Kovács ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cystic Fibrosis ◽  
Self Report ◽  
Clinical Severity ◽  
Proxy Report ◽  
Parent Proxy Report ◽  
Multisystemic Disease ◽  
Cystic Fibrosis Questionnaire ◽  
Parent Proxy

Introduction: Cystic fibrosis is a progressive multisystemic disease which affects the quality of life of patients. Aim: The aim of the study was to evaluate quality of life in Hungarian patients with cystic fibrosis. Methods: Validated Hungarian translation of The Cystic Fibrosis Questionnaire – Revised was used to measure quality of life. Clinical severity was determined on the basis of Shwachman–Kulczycki score. Lung function was measured using spirometry. Results: 59 patients were included from five centres in Hungary. The relationships between 8–13 year-old children self-report and parent proxy report was 0.77 (p<0.001) in physical functioning, 0.07 (p<0.001) in emotional functioning, 0.51 (p<0.001) in eating, 0.21 (p<0.001) in treatment burden, 0.54 (p<0.001) in body image, 0.49 (p<0.001) in respiratory symptoms and 0.40 (p<0.001) in digestive symptoms domains. Conclusions: In contrast to physical domains weak correlations were observed between answers obtained from children and their parents in psychosocial domains. The perception of both patients and their parents should be assessed when measuring quality of life in paediatric patients with cystic fibrosis. Orv. Hetil., 2013, 154, 784–791.

scholarly journals Neuropathic Pain Is Associated with Poor Health-Related Quality of Life in Adolescents with Sickle Cell Disease

Blood ◽  
2019 ◽  
Vol 134 (Supplement_1) ◽  
pp. 417-417
Author(s):  
Marisa Roman ◽  
Janelle Highland ◽  
Dawn Retherford ◽  
Amy Pan ◽  
Julie Panepinto ◽  
...  
Keyword(s):  
Neuropathic Pain ◽  
Pain Management ◽  
Self Report ◽  
Proxy Report ◽  
Parent Proxy Report ◽  
Related Quality ◽  
Paindetect Questionnaire ◽  
Health Related ◽  
And Control ◽  
Parent Proxy

Background. The hallmark complication of sickle cell disease (SCD) is pain - both acute pain and chronic, daily pain that worsens with increasing age. Emerging data reveal patients with SCD display features of nervous system sensitization, with associated thermal and mechanical hypersensitivity and neuropathic pain. Children with SCD report impaired health-related quality of life (HRQL) when compared to healthy race-matched controls. In addition, more severe SCD is associated with worse HRQL. Further, data show approximately 40% of patients with SCD report neuropathic pain. The presence of neuropathic pain is associated with poor HRQL in non-SCD pain conditions, but this relationship in SCD is unknown. Thus, we sought to investigate associations between neuropathic pain and HRQL in adolescents with SCD. We hypothesized that neuropathic pain is associated with worse HRQL in adolescents with SCD. Methods. We conducted a cross-sectional study of patients with SCD ages 13-18 years presenting for a clinic visit. All patients were in their baseline state of health, defined as no emergency department visits or hospitalizations for a SCD-related complication, including acute pain crisis, for at least 7 days prior to the completion of either assessment. Primary outcome was HRQL, assessed by the PedsQLTM SCD Module (child self-report and parent proxy-report). Neuropathic pain was assessed using the painDETECT questionnaire. PedsQLTM SCD Module is a 43-item questionnaire that encompasses 9 scales: (1) Pain and Hurt, (2) Pain Impact, (3) Pain Management and Control, (4) Worry I, (5) Worry II, (6) Emotions, (7) Treatment, (8) Communication I and (9) Communication II. This study focused on the following: Total Score, Pain and Hurt, Pain Impact and Pain Management and Control scales. PedsQLTM SCD Module is scored resulting in a Total Score (0-100) and individual scale scores (0-100). Higher scores indicate better HRQL; scores from 0-60 indicate poor HRQL. The painDETECT questionnaire is a 12-item screening tool used to differentiate neuropathic from non-neuropathic pain, validated for use in ages ≥14 years. painDETECT is scored from 0-38; scores between 13 and 38 indicate a probable or definite component of neuropathic pain. Descriptive statistics were used to summarize patient demographic characteristics, PedsQLTM scores and painDETECT scores. Pearson correlation coefficients were used to examine the associations between painDETECT and PedsQLTM Total Score, Pain Impact, Pain and Hurt and Pain Management and Control Scores. Analyses for child self-report and parent proxy-report were performed separately. A p&lt;0.05 was considered statistically significant. Results. Twelve patients were enrolled. The median (IQR) age was 15 (14-16.5) years, 75% were female and 83.3% were on hydroxyurea. All patients completed both PedsQLTM SCD Module and painDETECT questionnaire. Median PedsQLTM SCD Module child self-report Total Score was 51.75 (IQR 48.26-55.58) and 83.3% had a Total Score between 0-60. Median PedsQLTM SCD Module parent proxy-report Total Score was 54.49 (IQR 40.12-66.28) and 63.6% had a Total Score between 0-60. The median painDETECT score was 10.5 (IQR 4.5-14.5) and 41.7% had a painDETECT score of 13-38, indicating a probable or definite component of neuropathic pain. Higher painDETECT scores were significantly associated with lower PedsQLTM parent proxy-report Total Scores and Pain and Hurt Scores (Table 1). Higher painDETECT scores were also significantly associated with lower PedsQLTM SCD Module child self-report Pain and Hurt Scores (Table 1). There were no significant associations between painDETECT scores and Pain Impact or Pain Management and Control Scores (Table 1). Conclusions. Adolescents with SCD and neuropathic pain have worse HRQL, as reported by the child and the primary caregiver, even in their baseline state of health. These data provide preliminary evidence for a multimodal approach to pain assessment. Continued investigation of this relationship is warranted in order to further characterize the association between neuropathic pain and HRQL in patients with SCD over time. Disclosures Panepinto: NIH: Research Funding. Brandow:NIH: Research Funding.

scholarly journals Sex differences in children's health status as measured by the Pediatric Quality of Life Inventory (PedsQL)™: cross-sectional findings from a large school-based sample in the Netherlands

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Annelieke Hijkoop ◽  
Chantal A. ten Kate ◽  
Marlous J. Madderom ◽  
Hanneke IJsselstijn ◽  
Julie A. Reuser ◽  
...  
Keyword(s):  
Sex Differences ◽  
Health Status ◽  
Self Report ◽  
Proxy Report ◽  
Quality Of Life Inventory ◽  
School Based ◽  
Proxy Reports ◽  
Parent Proxy Report ◽  
Self Reports ◽  
Parent Proxy

Abstract Background Previous research has shown that female adolescents and adults report lower health status than their male peers. Possibly, this discrepancy already develops during childhood. We collected sex-specific data with the Pediatric Quality of Life Inventory (PedsQL) in a large school-based sample. Methods The online version of the PedsQL was administered to healthy Dutch children aged 5–7 years (parent proxy-report), 8–12 years (parent proxy-report and child self-report), and 13–17 years (parent proxy-report and child self-report), recruited through regular primary and secondary schools. Sex differences were assessed using t-tests or Mann–Whitney U-tests. Wilcoxon signed-rank tests and intraclass correlation coefficients served to compare parent proxy-reports with child self-reports. Multivariable linear regression analyses were used to assess the associations of sex of the child, age, and parental educational level with PedsQL scores. Results Eight hundred eighty-two parents and five hundred eighty one children were recruited from 15 different schools in the Netherlands. Parents of 8-to-12-year-olds reported higher scores on School Functioning for girls than for boys (mean difference [MD]: 6.56, p < 0.001). Parents of 13-to-17-year-olds reported lower scores on Physical and Emotional Functioning for girls than for boys (MDs: 2.14 and 5.79, p = 0.014 and p < 0.001, respectively). Girls aged 8–12 years reported lower scores than boys in this age group on Physical Functioning (MD: 3.09, p = 0.005). Girls aged 13–17 years reported lower scores than boys in this age group on Physical Functioning (MD: 3.67, p < 0.001), Emotional Functioning (MD: 8.11, p < 0.001), and the Total Score (MD 3.26, p = 0.004). No sex differences were found in children aged 5–7 years. Agreement between child self-reports and parent proxy-reports was poor to moderate. Conclusions Girls generally had lower PedsQL scores than boys, both in parent proxy-reports and in child self-reports. We recommend to apply sex-specific data when assessing health status using the PedsQL.

Meta-analysis of quality of life in children and adolescents with ADHD: By both parent proxy-report and child self-report using PedsQL™

2016 ◽  
Vol 51-52 ◽  
pp. 160-172 ◽  
Author(s):  
Yi-chen Lee ◽  
Hao-Jan Yang ◽  
Vincent Chin-hung Chen ◽  
Wan-Ting Lee ◽  
Ming-Jen Teng ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Children And Adolescents ◽  
Meta Analysis ◽  
Self Report ◽  
Proxy Report ◽  
Parent Proxy Report ◽  
Parent Proxy

scholarly journals Measuring parent proxy-reported quality of life of 11 rare diseases in children in Zhejiang, China

2020 ◽  
Vol 18 (1) ◽  
Author(s):  
Qisheng Gao ◽  
Shanshan Wang ◽  
Jianping Ren ◽  
Xin Wen
Keyword(s):  
Quality Of Life ◽  
Rare Diseases ◽  
Physical Functioning ◽  
Psychosocial Health ◽  
Self Report ◽  
School Functioning ◽  
Proxy Report ◽  
Parent Proxy Report ◽  
Parent Proxy

Abstract Background It has become increasingly important to measure the health-related quality of life (HRQoL) of rare diseases in children and adolescents in recent decades. Much attention has been paid to investigate the HROoL of a specific rare disease by self-report in previous studies. This study aimed to evaluate and compare the HROoL of 11 rare diseases in Chinese children by parent proxy-report, to explore the factors associated with HROoL of patients, and to understand the problems of most concern. Methods A total of 651 children aged from 2 to 18 were enrolled from the Children’s Hospital Affiliated Zhejiang University in 2018. Their parents completed the parent proxy-report version of the Pediatric Quality of Life Inventory™ 4.0 (PedsQL™ 4.0). Independent samples t-test, one-way ANOVA, or Kruskal–Wallis H test was used to compare HROoL scores between groups. Multilevel linear regression models with random intercept were applied to analyze the relationship between socioeconomic variables and both the total score and subdomain scores. Results The total PedsQL scores of Patent ductus arteriosus (PDA), Infantile agranulocytosis, Autoimmune thrombocytopenia (ITP), Polysyndactyly, Hirschsprung disease, Cleft lip and palate, Tetralogy of fallot, Myasthenia gravis, Guillain–barre syndrome, Glycogen storage disease, and Langerhans cell histiocytosis children were 79.65 ± 5.46, 95.88 ± 3.48, 71.39 ± 3.27, 91.77 ± 6.35, 76.18 ± 6.92, 96.33 ± 4.22, 77.85 ± 8.90, 95.99 ± 3.31, 85.77 ± 4.56, 82.97 ± 4.13 and 77.6 ± 5.15, respectively. Age was significantly associated with physical functioning, school functioning, and psychosocial health scores. The household registration place was significantly related to the total score. The most urgent desire of patients was to reduce the overall medical costs. Conclusions This study showed that patients with PDA had the lowest physical functioning score, while patients with ITP scored the lowest in the emotional functioning, social functioning, school functioning, psychosocial health, and total scores. Incentive policies should be further adopted to improve orphan drug availability and reduce the economic burden of rare diseases.

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