Sarcoma Assessment Measure-Paediatric Version (SAM-Paeds): development of a disease-specific patient reported outcome measure for children with sarcoma
Abstract Purpose Sarcomas account for approximately 10–15% of all cancer in children aged ≤ 16. Poorer health-related quality of life (HRQoL) is recorded in comparison to other cancers; however, these studies are limited by generic HRQoL measures not being specific to patients with sarcoma. The aim...
Saved in:
| Main Authors: | , , , , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
SpringerOpen
2025-03-01
|
| Series: | Journal of Patient-Reported Outcomes |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s41687-025-00857-6 |
| Tags: |
Add Tag
No Tags, Be the first to tag this record!
|
| _version_ | 1849774393032441856 |
|---|---|
| author | Rachel M. Taylor Sophie-Anne Purnell Sian Hocking Rachael Windsor Craig Gerrand Meriel Jenney Madeleine Adams |
| author_facet | Rachel M. Taylor Sophie-Anne Purnell Sian Hocking Rachael Windsor Craig Gerrand Meriel Jenney Madeleine Adams |
| author_sort | Rachel M. Taylor |
| collection | DOAJ |
| description | Abstract Purpose Sarcomas account for approximately 10–15% of all cancer in children aged ≤ 16. Poorer health-related quality of life (HRQoL) is recorded in comparison to other cancers; however, these studies are limited by generic HRQoL measures not being specific to patients with sarcoma. The aim of this study was to develop paediatric version of the Sarcoma Assessment Measure (SAM). Methods This mixed methods study comprised three stages: item generation, item reduction and establishing content validity. Children aged 8–16 years and parents of children aged 0–16 years with a diagnosis of sarcoma and within 5 years of completion of treatment were invited to participate. Results A total of 29 children and 38 parents from three sites participated in the study. Content analysis of the interview transcripts identified 277 post-diagnosis experience statements of which 128 ‘items’ were included in an Item Reduction Questionnaire, grouped into six domains; physical, disability and inclusion; impact of diagnosis; emotional, impact on family, education. Items with a mean score < 5 and a content validity index of < 0.75 were removed. The final version of SAM-Paeds comprises 33 items (parent version) and 21 items (child version). Conclusion This study has developed the first disease-specific HRQoL measure for paediatric sarcoma patients. SAM-Paeds is planned for inclusion within international sarcoma clinical trials and will be validated alongside current generic measures. Developed with the same methodology as the adult SAM questionnaire will facilitate the assessment of QoL longitudinally to assess the long-term impact of the diagnosis and treatment of sarcoma in childhood. |
| format | Article |
| id | doaj-art-7a277610971f480fb33ad5aaa91bf9fe |
| institution | DOAJ |
| issn | 2509-8020 |
| language | English |
| publishDate | 2025-03-01 |
| publisher | SpringerOpen |
| record_format | Article |
| series | Journal of Patient-Reported Outcomes |
| spelling | doaj-art-7a277610971f480fb33ad5aaa91bf9fe2025-08-20T03:01:43ZengSpringerOpenJournal of Patient-Reported Outcomes2509-80202025-03-01911910.1186/s41687-025-00857-6Sarcoma Assessment Measure-Paediatric Version (SAM-Paeds): development of a disease-specific patient reported outcome measure for children with sarcomaRachel M. Taylor0Sophie-Anne Purnell1Sian Hocking2Rachael Windsor3Craig Gerrand4Meriel Jenney5Madeleine Adams6Centre for Nurse, Midwife and Allied Health Profession led Research (CNMAR), University College London Hospitals NHS Foundation TrustDepartment of Paediatric Oncology, Noah’s Ark Children’s Hospital for WalesDepartment of Paediatric Oncology, Noah’s Ark Children’s Hospital for WalesLondon Sarcoma Service, University College London Hospitals NHS Foundation TrustBone and Soft Tissue Tumour Service, Royal National Orthopaedic Hospital NHS TrustDepartment of Paediatric Oncology, Noah’s Ark Children’s Hospital for WalesDepartment of Paediatric Oncology, Noah’s Ark Children’s Hospital for WalesAbstract Purpose Sarcomas account for approximately 10–15% of all cancer in children aged ≤ 16. Poorer health-related quality of life (HRQoL) is recorded in comparison to other cancers; however, these studies are limited by generic HRQoL measures not being specific to patients with sarcoma. The aim of this study was to develop paediatric version of the Sarcoma Assessment Measure (SAM). Methods This mixed methods study comprised three stages: item generation, item reduction and establishing content validity. Children aged 8–16 years and parents of children aged 0–16 years with a diagnosis of sarcoma and within 5 years of completion of treatment were invited to participate. Results A total of 29 children and 38 parents from three sites participated in the study. Content analysis of the interview transcripts identified 277 post-diagnosis experience statements of which 128 ‘items’ were included in an Item Reduction Questionnaire, grouped into six domains; physical, disability and inclusion; impact of diagnosis; emotional, impact on family, education. Items with a mean score < 5 and a content validity index of < 0.75 were removed. The final version of SAM-Paeds comprises 33 items (parent version) and 21 items (child version). Conclusion This study has developed the first disease-specific HRQoL measure for paediatric sarcoma patients. SAM-Paeds is planned for inclusion within international sarcoma clinical trials and will be validated alongside current generic measures. Developed with the same methodology as the adult SAM questionnaire will facilitate the assessment of QoL longitudinally to assess the long-term impact of the diagnosis and treatment of sarcoma in childhood.https://doi.org/10.1186/s41687-025-00857-6SarcomaQuality of lifePatient-reported outcomeValidation |
| spellingShingle | Rachel M. Taylor Sophie-Anne Purnell Sian Hocking Rachael Windsor Craig Gerrand Meriel Jenney Madeleine Adams Sarcoma Assessment Measure-Paediatric Version (SAM-Paeds): development of a disease-specific patient reported outcome measure for children with sarcoma Journal of Patient-Reported Outcomes Sarcoma Quality of life Patient-reported outcome Validation |
| title | Sarcoma Assessment Measure-Paediatric Version (SAM-Paeds): development of a disease-specific patient reported outcome measure for children with sarcoma |
| title_full | Sarcoma Assessment Measure-Paediatric Version (SAM-Paeds): development of a disease-specific patient reported outcome measure for children with sarcoma |
| title_fullStr | Sarcoma Assessment Measure-Paediatric Version (SAM-Paeds): development of a disease-specific patient reported outcome measure for children with sarcoma |
| title_full_unstemmed | Sarcoma Assessment Measure-Paediatric Version (SAM-Paeds): development of a disease-specific patient reported outcome measure for children with sarcoma |
| title_short | Sarcoma Assessment Measure-Paediatric Version (SAM-Paeds): development of a disease-specific patient reported outcome measure for children with sarcoma |
| title_sort | sarcoma assessment measure paediatric version sam paeds development of a disease specific patient reported outcome measure for children with sarcoma |
| topic | Sarcoma Quality of life Patient-reported outcome Validation |
| url | https://doi.org/10.1186/s41687-025-00857-6 |
| work_keys_str_mv | AT rachelmtaylor sarcomaassessmentmeasurepaediatricversionsampaedsdevelopmentofadiseasespecificpatientreportedoutcomemeasureforchildrenwithsarcoma AT sophieannepurnell sarcomaassessmentmeasurepaediatricversionsampaedsdevelopmentofadiseasespecificpatientreportedoutcomemeasureforchildrenwithsarcoma AT sianhocking sarcomaassessmentmeasurepaediatricversionsampaedsdevelopmentofadiseasespecificpatientreportedoutcomemeasureforchildrenwithsarcoma AT rachaelwindsor sarcomaassessmentmeasurepaediatricversionsampaedsdevelopmentofadiseasespecificpatientreportedoutcomemeasureforchildrenwithsarcoma AT craiggerrand sarcomaassessmentmeasurepaediatricversionsampaedsdevelopmentofadiseasespecificpatientreportedoutcomemeasureforchildrenwithsarcoma AT merieljenney sarcomaassessmentmeasurepaediatricversionsampaedsdevelopmentofadiseasespecificpatientreportedoutcomemeasureforchildrenwithsarcoma AT madeleineadams sarcomaassessmentmeasurepaediatricversionsampaedsdevelopmentofadiseasespecificpatientreportedoutcomemeasureforchildrenwithsarcoma |