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      Pain and Communication in Children with Cerebral Palsy: Influence on Parents’ Perception of Family Impact and Healthcare Satisfaction

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          Abstract

          Cerebral palsy (CP) is an impacting chronic condition. Concomitant comorbidities such as pain and speech inability may further affect parents’ perception of the pathology impact in the family quality of life and the provided care. The objective of this cross-sectional descriptive correlational study was to compare parental reports on family impact and healthcare satisfaction in children with CP with and without chronic pain and with and without speech ability. Parents of 59 children with CP (age range = 4–18 years) completed several questions about pain and speech ability and two modules of the Pediatric Quality of Life Measurement Model: The PedsQLTM 2.0 Family Impact Module and the PedsQLTM Healthcare Satisfaction Generic Module. Our findings revealed that children’s pain slightly impacted family physical health, social health and worry. In children without pain, speech inability increased the perceived health impact. Parents’ healthcare satisfaction was barely affected by pain or speech inability, both increasing parents’ satisfaction in the professional technical skills and inclusion of family domains on the care plan. In conclusion, pain and speech inability in children with CP can impact family health but not healthcare satisfaction. Regular assessment and intervention in family health is essential for the design of family-centred programs for children with CP.

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          Most cited references52

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          The PedsQL: measurement model for the pediatric quality of life inventory.

          Pediatric patients' self-report of health-related quality of life (HRQOL) has emerged as an important patient-based health outcome. A practical, validated generic measure of HRQOL facilitates assessing risk, tracking health status, and measuring treatment outcomes in pediatric populations. The PedsQL is a brief, standardized, generic assessment instrument that systematically assesses patients' and parents' perceptions of HRQOL in pediatric patients with chronic health conditions using pediatric cancer as an exemplary model. The PedsQL is based on a modular approach to measuring HRQOL and consists of a 15-item core measure of global HRQOL and eight supplemental modules assessing specific symptom or treatment domains. The PedsQL was empirically derived from data collected from 291 pediatric cancer patients and their parents at various stages of treatment. Both reliability and validity were determined. Cronbach's alpha coefficients for the core measure (alpha = .83 for patient and alpha = .86 for parent) were acceptable for group comparisons. Alphas for the patient self-report modules generally ranged from .70 to .89. Discriminant or clinical validity, using the known-groups approach, was demonstrated for patients on- versus off-treatments. The 11 scales showed small-to-medium positive intercorrelations, supporting the multidimensional measurement model. Further construct validity was demonstrated via a multimethod-multitrait matrix using standardized psychosocial questionnaires. The results support the PedsQL as a reliable and valid measure of HRQOL. The PedsQL core and modular design makes it flexible enough to be used in a variety of research and clinical applications for pediatric chronic health conditions.
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            Content validity of the expanded and revised Gross Motor Function Classification System.

            The aim of this study was to validate the expanded and revised Gross Motor Function Classification System (GMFCS-E&R) for children and youth with cerebral palsy using group consensus methods. Eighteen physical therapists participated in a nominal group technique to evaluate the draft version of a 12- to 18-year age band. Subsequently, 30 health professionals from seven countries participated in a Delphi survey to evaluate the revised 12- to 18-year and 6- to 12-year age bands. Consensus was defined as agreement with a question by at least 80% of participants. After round 3 of the Delphi survey, consensus was achieved for the clarity and accuracy of the descriptions for each level and the distinctions between levels for both the 12- to 18-year and 6- to 12-year age bands. Participants also agreed that the distinction between capability and performance and the concept that environmental and personal factors influence methods of mobility were useful for classification of gross motor function. The results provide evidence of content validity of the GMFCS-E&R. The GMFCS-E&R has utility for communication, clinical decision making, databases, registries, and clinical research.
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              The PedsQL as a pediatric patient-reported outcome: reliability and validity of the PedsQL Measurement Model in 25,000 children.

              The PedsQL Measurement Model was designed as a modular approach to measuring pediatric health-related quality of life, and developed to integrate the relative merits of generic and disease-specific approaches. The PedsQL 4.0 Generic Core Scales have been translated into over 60 languages, with published data on over 25,000 children and adolescents in more than 75 peer-reviewed journals since 2001 for healthy children and numerous pediatric chronic health conditions. The PedsQL Disease and Condition-Specific Modules were designed to measure health-related quality-of-life dimensions specifically tailored for pediatric chronic health conditions, and include the PedsQL Asthma, Arthritis/Rheumatology, Cancer, Diabetes, Cardiac and Cerebral Palsy Modules, as well as the generic PedsQL Multidimensional Fatigue Scale, Pediatric Pain Questionnaire, Family Impact Module and Healthcare Satisfaction Module. The PedsQL has demonstrated reliability, validity, sensitivity and responsiveness for child self report for ages 5-18 years and parent proxy report for ages 2-18 years. The PedsQL has been shown to be related to other key constructs in pediatric healthcare such as access to needed care, healthcare barriers and quality of primary care. Future advances in the PedsQL() Measurement Model include web-based electronic administration (ePedsQL), integration into the electronic medical record, further efficacy and effectiveness outcome trials, including PedsQL ResourceConnect(SM) and PedsQL TIPS(SM), the development of the generic PedsQL Infant Scales for ages birth to 24 months and disease and condition-specific modules for other pediatric chronic health conditions.
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                Author and article information

                Contributors
                Role: Academic Editor
                Journal
                Children (Basel)
                Children (Basel)
                children
                Children
                MDPI
                2227-9067
                27 January 2021
                February 2021
                : 8
                : 2
                : 87
                Affiliations
                [1 ]Research Institute of Health Sciences (IUNICS-IdISBa), University of the Balearic Islands, 07122 Palma, Spain; alvaro.sabater@ 123456uib.es (Á.S.-G.); pedro.montoya@ 123456uib.es (P.M.)
                [2 ]Department of Nursing and Physiotherapy, University of the Balearic Islands, 07122 Palma, Spain
                [3 ]Fundación Aspace Baleares, Ctra. Vieja de Bunyola, Km 8.2, 07141 Marratxí, Spain
                Author notes
                [* ]Correspondence: inma.riquelme@ 123456uib.es ; Tel.: +34-971-171-310; Fax: +34-971-172-309
                Author information
                https://orcid.org/0000-0003-4705-8325
                https://orcid.org/0000-0001-5770-7240
                https://orcid.org/0000-0001-8652-948X
                Article
                children-08-00087
                10.3390/children8020087
                7912482
                33513751
                e259b13c-96af-43a6-ac68-24071c20cbcc
                © 2021 by the authors.

                Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license ( http://creativecommons.org/licenses/by/4.0/).

                History
                : 11 December 2020
                : 22 January 2021
                Categories
                Article

                cerebral palsy,pain,speech,family impact,healthcare satisfaction

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