What matters to children with lower limb deformities: an international qualitative study guiding the development of a new patient-reported outcome measure
Abstract Background Lower limb deformities include conditions such as leg length discrepancy, lower limb deficiency and associated angular and rotational deformities of the hips, knees, ankles and feet. Children with lower limb deformities often have physical limitations due to gait irregularities a...
| Main Authors: | , , , , , , , , |
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| Format: | Article |
| Language: | English |
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SpringerOpen
2021-04-01
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| Series: | Journal of Patient-Reported Outcomes |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s41687-021-00299-w |
| _version_ | 1818641533212033024 |
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| author | Harpreet Chhina Anne F. Klassen Jacek A. Kopec John Oliffe Christopher Iobst Noemi Dahan-Oliel Aditya Aggarwal Tim Nunn Anthony P. Cooper |
| author_facet | Harpreet Chhina Anne F. Klassen Jacek A. Kopec John Oliffe Christopher Iobst Noemi Dahan-Oliel Aditya Aggarwal Tim Nunn Anthony P. Cooper |
| author_sort | Harpreet Chhina |
| collection | DOAJ |
| description | Abstract Background Lower limb deformities include conditions such as leg length discrepancy, lower limb deficiency and associated angular and rotational deformities of the hips, knees, ankles and feet. Children with lower limb deformities often have physical limitations due to gait irregularities and pain. The differences in the appearance and function of their lower limbs can discourage participation in social, recreational and leisure activities, which may result in behavioural, emotional, psychological and social adjustment problems. The health-related quality of life (HRQL) of these children is often impacted due to the factors discussed above, as well as by the complex surgical procedures. Surgical treatment options for limb deformities in children vary from limb lengthening and reconstruction to amputation. The lack of evidence demonstrating superiority of either treatment options and their effect on HRQL limits the ability of healthcare providers to counsel families on the best evidence-based treatment option for them. This manuscript describes the international qualitative study which guided the development of a new patient-reported outcome measure (PROM). Individual semi-structured face-to-face interviews with children with lower limb deformities and their parents were conducted at five sites: Canada (2 sites), Ethiopia, India and the USA. Results Seventy-nine interviews were conducted at five international sites. Five main themes emerged from the qualitative interviews and formed the basis of the conceptual framework. These themes were: 1) appearance, 2) physical health, 3) psychological health 4) school and 5) social health. Conclusions Lower limb deformities have a substantial impact on the HRQL of children. The concepts of interest identified in our study were similar across children from all countries. The conceptual framework guided the development of outcome scales specific to these patients. The information about the impact of various treatment options on the HRQL of children with lower limb deformities, collected using this new PROM, could be used to inform parents and children about outcomes (physical, social, psychological) associated with specific treatment options. This information could supplement other objective outcome information (e.g., complication rates, how the leg will look, etc.) to help families to come to a more informed decision on a child’s course of treatment. |
| first_indexed | 2024-12-16T23:28:40Z |
| format | Article |
| id | doaj.art-ea16627e50bb44dabe152fba4fd964a2 |
| institution | Directory Open Access Journal |
| issn | 2509-8020 |
| language | English |
| last_indexed | 2024-12-16T23:28:40Z |
| publishDate | 2021-04-01 |
| publisher | SpringerOpen |
| record_format | Article |
| series | Journal of Patient-Reported Outcomes |
| spelling | doaj.art-ea16627e50bb44dabe152fba4fd964a22022-12-21T22:11:57ZengSpringerOpenJournal of Patient-Reported Outcomes2509-80202021-04-015111210.1186/s41687-021-00299-wWhat matters to children with lower limb deformities: an international qualitative study guiding the development of a new patient-reported outcome measureHarpreet Chhina0Anne F. Klassen1Jacek A. Kopec2John Oliffe3Christopher Iobst4Noemi Dahan-Oliel5Aditya Aggarwal6Tim Nunn7Anthony P. Cooper8Department of Experimental Medicine, Faculty of Medicine, University of British ColumbiaDepartment of Pediatrics, McMaster UniversitySchool of Population and Public Health, University of British Columbia, Arthritis Research CanadaSchool of Nursing, University of British ColumbiaDepartment of Orthopaedic Surgery, The Ohio State University, College of Medicine, Nationwide Children’s HospitalShriners Hospitals for Children, School of Physical and Occupational Therapy, McGill UniversityDepartment of Orthopaedic Surgery, Post Graduate Institute of Medical Education and ResearchCURE Ethiopia Children’s HospitalDepartment of Orthopaedics, BC Children’s HospitalAbstract Background Lower limb deformities include conditions such as leg length discrepancy, lower limb deficiency and associated angular and rotational deformities of the hips, knees, ankles and feet. Children with lower limb deformities often have physical limitations due to gait irregularities and pain. The differences in the appearance and function of their lower limbs can discourage participation in social, recreational and leisure activities, which may result in behavioural, emotional, psychological and social adjustment problems. The health-related quality of life (HRQL) of these children is often impacted due to the factors discussed above, as well as by the complex surgical procedures. Surgical treatment options for limb deformities in children vary from limb lengthening and reconstruction to amputation. The lack of evidence demonstrating superiority of either treatment options and their effect on HRQL limits the ability of healthcare providers to counsel families on the best evidence-based treatment option for them. This manuscript describes the international qualitative study which guided the development of a new patient-reported outcome measure (PROM). Individual semi-structured face-to-face interviews with children with lower limb deformities and their parents were conducted at five sites: Canada (2 sites), Ethiopia, India and the USA. Results Seventy-nine interviews were conducted at five international sites. Five main themes emerged from the qualitative interviews and formed the basis of the conceptual framework. These themes were: 1) appearance, 2) physical health, 3) psychological health 4) school and 5) social health. Conclusions Lower limb deformities have a substantial impact on the HRQL of children. The concepts of interest identified in our study were similar across children from all countries. The conceptual framework guided the development of outcome scales specific to these patients. The information about the impact of various treatment options on the HRQL of children with lower limb deformities, collected using this new PROM, could be used to inform parents and children about outcomes (physical, social, psychological) associated with specific treatment options. This information could supplement other objective outcome information (e.g., complication rates, how the leg will look, etc.) to help families to come to a more informed decision on a child’s course of treatment.https://doi.org/10.1186/s41687-021-00299-wPatient- reported outcome instrumentsHealth- related quality of lifeChildrenLower limb deformitiesQualitative interviewsInternational study |
| spellingShingle | Harpreet Chhina Anne F. Klassen Jacek A. Kopec John Oliffe Christopher Iobst Noemi Dahan-Oliel Aditya Aggarwal Tim Nunn Anthony P. Cooper What matters to children with lower limb deformities: an international qualitative study guiding the development of a new patient-reported outcome measure Journal of Patient-Reported Outcomes Patient- reported outcome instruments Health- related quality of life Children Lower limb deformities Qualitative interviews International study |
| title | What matters to children with lower limb deformities: an international qualitative study guiding the development of a new patient-reported outcome measure |
| title_full | What matters to children with lower limb deformities: an international qualitative study guiding the development of a new patient-reported outcome measure |
| title_fullStr | What matters to children with lower limb deformities: an international qualitative study guiding the development of a new patient-reported outcome measure |
| title_full_unstemmed | What matters to children with lower limb deformities: an international qualitative study guiding the development of a new patient-reported outcome measure |
| title_short | What matters to children with lower limb deformities: an international qualitative study guiding the development of a new patient-reported outcome measure |
| title_sort | what matters to children with lower limb deformities an international qualitative study guiding the development of a new patient reported outcome measure |
| topic | Patient- reported outcome instruments Health- related quality of life Children Lower limb deformities Qualitative interviews International study |
| url | https://doi.org/10.1186/s41687-021-00299-w |
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