دورية أكاديمية
Examining tools for assessing the impact of chronic pain on emotional functioning in children and young people with cerebral palsy: stakeholder preference and recommendations for modification.
العنوان: | Examining tools for assessing the impact of chronic pain on emotional functioning in children and young people with cerebral palsy: stakeholder preference and recommendations for modification. |
---|---|
المؤلفون: | Smith MG; School of Allied Health Science and Practice, University of Adelaide, North Terrace, Adelaide, SA, 5005, Australia. Meredith.smith@adelaide.edu.au., Gibson RJ; School of Allied Health Science and Practice, University of Adelaide, North Terrace, Adelaide, SA, 5005, Australia., Russo RN; College of Medicine and Public Health, Flinders University, Adelaide, Australia.; Paediatric Rehabilitation Department, Women's and Children's Hospital, Adelaide, Australia., Karanicolas S; School of Dentistry, University of Adelaide, Adelaide, Australia., Harvey AR; Neurodisability and Rehabilitation, Murdoch Children's Research Institute, Melbourne, Australia.; Medicine, Dentistry and Health Sciences, University of Melbourne, Melbourne, Australia. |
المصدر: | Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation [Qual Life Res] 2024 Aug; Vol. 33 (8), pp. 2247-2259. Date of Electronic Publication: 2024 May 25. |
نوع المنشور: | Journal Article |
اللغة: | English |
بيانات الدورية: | Publisher: Springer Netherlands Country of Publication: Netherlands NLM ID: 9210257 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1573-2649 (Electronic) Linking ISSN: 09629343 NLM ISO Abbreviation: Qual Life Res Subsets: MEDLINE |
أسماء مطبوعة: | Publication: 2005- : Netherlands : Springer Netherlands Original Publication: Oxford, UK : Rapid Communications of Oxford, Ltd, c1992- |
مواضيع طبية MeSH: | Cerebral Palsy*/psychology , Chronic Pain*/psychology , Pain Measurement* , Quality of Life*/psychology , Focus Groups*, Humans ; Child ; Adolescent ; Female ; Male ; Surveys and Questionnaires/standards ; Psychometrics ; Young Adult ; Adaptation, Psychological ; Emotions ; Adult ; Stakeholder Participation |
مستخلص: | Purpose: To firstly identify tools for assessing the impact of chronic pain on emotional functioning in children and young people with cerebral palsy (CP), and secondly identify suggestions to improve their relevance, comprehensiveness, comprehensibility and feasibility for the CP population. Improving assessment of the impact of pain on emotional functioning can enhance quality of life by improving access to interventions for pain-related physical disability, anxiety and depression. Methods: Ethics approval was granted through the Women's and Children's Health Network Human Research Ethics Committee (2022/HRE00154). A mixed methods study with people with lived experience and clinicians, and guided by the Consensus-based Standards for Measurement Instruments (COSMIN), was undertaken. An online survey identified the highest rated tools for validation and/or modification for young people with CP and chronic pain. Focus groups and interviews investigated content validity and feasibility of the tools identified as highest rated. Results: The Fear of Pain Questionnaire for Children-SF (FOPQ-C-SF) and Modified Brief Pain Inventory (mBPI) were the highest rated for pain coping and multidimensional assessment (respectively) from the online survey (n = 61) of eight tools presented. Focus group and interview data (n = 30), including 58 unique modification suggestions, were coded to six categories: accessibility, comprehensibility, feasibility, relevance, presentation and comprehensiveness. Conclusion: Potential modifications have been identified to improve the appropriateness and feasibility of the FOPQ-C-SF and mBPI for children and young people with CP. Future research should implement and test these modifications, prioritising the involvement of people with lived experience to ensure their needs are met alongside clinicians. (© 2024. Crown.) |
References: | J Biomed Inform. 2009 Apr;42(2):377-81. (PMID: 18929686) Disabil Rehabil. 2022 Nov;44(23):7161-7166. (PMID: 34613866) Dev Med Child Neurol. 2022 Dec;64(12):1494-1506. (PMID: 35952356) Glob Qual Nurs Res. 2017 Nov 24;4:2333393617742282. (PMID: 29204457) Pediatrics. 2015 Oct;136(4):e947-60. (PMID: 26416940) Disabil Rehabil. 2024 Mar;46(6):1112-1120. (PMID: 36987867) Int J Qual Health Care. 2007 Dec;19(6):349-57. (PMID: 17872937) J Pediatr Psychol. 2018 Apr 1;43(3):314-325. (PMID: 29049813) Pain. 2015 Aug;156(8):1511-1518. (PMID: 25906349) Pain. 2020 Mar;161(3):565-573. (PMID: 31688496) Dev Med Child Neurol. 2022 Jul;64(7):830-839. (PMID: 35156198) Pain Rep. 2023 Nov 28;8(6):e1099. (PMID: 38033716) Pediatrics. 2012 Nov;130(5):e1285-312. (PMID: 23045562) Pain. 2003 Aug;104(3):639-646. (PMID: 12927636) J Pain. 2012 Sep;13(9):827-35. (PMID: 22832693) Dev Med Child Neurol. 2023 Aug;65(8):1029-1042. (PMID: 36740907) Pediatrics. 2013 Aug;132(2):e407-13. (PMID: 23858420) Int J Qual Health Care. 2006 Oct;18(5):377-82. (PMID: 16951425) Dev Med Child Neurol. 2019 Mar;61(3):305-314. (PMID: 30508221) Scand J Pain. 2023 Jun 02;23(3):546-552. (PMID: 37267482) Braz J Phys Ther. 2016 Jan 19;20(2):105-13. (PMID: 26786084) Pain. 2017 Jun;158(6):1063-1068. (PMID: 28221284) Pain. 2005 Nov;118(1-2):263-70. (PMID: 16202524) Disabil Rehabil. 2023 Feb;45(3):483-493. (PMID: 35133223) J Adv Nurs. 2016 Dec;72(12):2954-2965. (PMID: 27221824) J Biomed Inform. 2019 Jul;95:103208. (PMID: 31078660) Pain Rep. 2018 Jul 17;3(4):e666. (PMID: 30123858) Dev Med Child Neurol. 2023 Mar;65(3):318-328. (PMID: 36111806) Adm Policy Ment Health. 2015 Sep;42(5):533-44. (PMID: 24193818) J Pain. 2013 Sep;14(9):975-82. (PMID: 23701707) Qual Life Res. 2018 May;27(5):1159-1170. (PMID: 29550964) Qual Life Res. 2018 May;27(5):1147-1157. (PMID: 29435801) Cochrane Database Syst Rev. 2018 Sep 29;9:CD003968. (PMID: 30270423) Arch Phys Med Rehabil. 2020 Feb;101(2):213-219. (PMID: 31521713) |
فهرسة مساهمة: | Keywords: Cerebral palsy; Chronic pain; Measurement; Patient-reported outcome measures Local Abstract: [plain-language-summary] Up to 75% of children and young people with cerebral palsy report chronic pain, which is much higher than those without cerebral palsy. Assessing how pain impacts emotional functioning, and how each individual copes with pain, is of particular importance due to known links between emotional functioning and long term pain outcomes. Reliable assessment of how pain impacts emotional functioning may also help to identify those who would benefit from psychological treatments. Although pain questionnaires are available, many are not suitable for children and young people with cerebral palsy with different communication, cognitive and movement abilities. This study had two aims: (1) to work out which of the currently available tools that assess how pain impacts emotional functioning are considered best for people with cerebral palsy, and (2) to identify potential modifications to these tools. The two most relevant and easy to understand questionnaires selected for modification were the Fear of Pain Questionnaire for Children and the modified Brief Pain Inventory. A number of modifications were identified, including improving how relevant the questions were to people with cerebral palsy, improving accessibility for people with complex communication needs or cognitive impairment and improving how easy to understand the questions and answer options are. These modifications can now be implemented to make it easier for people with cerebral palsy to use the pain assessments. They should then be tested in people with cerebral palsy with different communication, cognitive and movement abilities. |
تواريخ الأحداث: | Date Created: 20240525 Date Completed: 20240729 Latest Revision: 20240801 |
رمز التحديث: | 20240801 |
مُعرف محوري في PubMed: | PMC11286630 |
DOI: | 10.1007/s11136-024-03693-1 |
PMID: | 38795198 |
قاعدة البيانات: | MEDLINE |
تدمد: | 1573-2649 |
---|---|
DOI: | 10.1007/s11136-024-03693-1 |