Psychological interventions for individuals with Ehlers-Danlos syndrome and hypermobility spectrum disorder: a scoping review
Abstract Purpose To identify the nature and extent of the evidence on psychological interventions among individuals with Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorder (HSD). Materials and methods Eligible studies reported on psychological interventions for individuals of all ages...
| Main Authors: | , , , , , , , , , |
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| Format: | Article |
| Language: | English |
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BMC
2023-08-01
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| Series: | Orphanet Journal of Rare Diseases |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s13023-023-02799-y |
| _version_ | 1827708363965726720 |
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| author | Jessica Z. Song Dorothy Luong Estée C. H. Feldman Susan Tran Laure Perrier Kathleen Eubanks Mark Bayley Monika Kastner Maxwell Slepian Sarah E. P. Munce |
| author_facet | Jessica Z. Song Dorothy Luong Estée C. H. Feldman Susan Tran Laure Perrier Kathleen Eubanks Mark Bayley Monika Kastner Maxwell Slepian Sarah E. P. Munce |
| author_sort | Jessica Z. Song |
| collection | DOAJ |
| description | Abstract Purpose To identify the nature and extent of the evidence on psychological interventions among individuals with Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorder (HSD). Materials and methods Eligible studies reported on psychological interventions for individuals of all ages with EDS and/or HSD. All studies published in English were included, with no restrictions to publication year or status. MEDLINE, CINAHL, EMBASE, and PsycINFO were searched. Two reviewers independently screened studies and abstracted data. Results This scoping review included 10 studies reporting on EDS, HSD, or both. Only cohort studies and case studies were identified. Four studies investigated Cognitive Behavioural Therapy (CBT), one investigated Dialectical Behavioural Therapy (DBT), two investigated psychoeducation, two investigated Intensive Interdisciplinary Pain Treatment (IIPT), and one investigated Acceptance Commitment Therapy (ACT). Interventions targeted pain management, self-destructive behaviours, and related psychological issues (e.g., depression/anxiety). Sample sizes were small (n < 50) for most studies and interventions were generally poorly described. Conclusions There is a critical need for high-quality research surrounding psychological interventions for individuals with EDS/HSD. Psychological interventions for these individuals are understudied and existing studies lack validity. Researchers should investigate psychological interventions for individuals with all types of EDS/HSD with high-quality studies to validate findings from the existing studies. |
| first_indexed | 2024-03-10T17:02:37Z |
| format | Article |
| id | doaj.art-2d86f61f93aa4c6aa67249058c6def4a |
| institution | Directory Open Access Journal |
| issn | 1750-1172 |
| language | English |
| last_indexed | 2024-03-10T17:02:37Z |
| publishDate | 2023-08-01 |
| publisher | BMC |
| record_format | Article |
| series | Orphanet Journal of Rare Diseases |
| spelling | doaj.art-2d86f61f93aa4c6aa67249058c6def4a2023-11-20T10:53:47ZengBMCOrphanet Journal of Rare Diseases1750-11722023-08-0118112510.1186/s13023-023-02799-yPsychological interventions for individuals with Ehlers-Danlos syndrome and hypermobility spectrum disorder: a scoping reviewJessica Z. Song0Dorothy Luong1Estée C. H. Feldman2Susan Tran3Laure Perrier4Kathleen Eubanks5Mark Bayley6Monika Kastner7Maxwell Slepian8Sarah E. P. Munce9KITE Research Institute, Toronto Rehabilitation Institute - University Health NetworkKITE Research Institute, Toronto Rehabilitation Institute - University Health NetworkBehavioral Medicine and Clinical Psychology, Cincinnati Children’s Hospital Medical CenterDepartment of Psychology, DePaul UniversityDalla Lana School of Public Health, Institute of Health Policy, Management and Evaluation, University of TorontoEhlers-Danlos Syndrome CanadaKITE Research Institute, Toronto Rehabilitation Institute - University Health NetworkNorth York General HospitalGoodHope Ehlers-Danlos Syndrome Clinic, Toronto General Hospital, University Health NetworkKITE Research Institute, Toronto Rehabilitation Institute - University Health NetworkAbstract Purpose To identify the nature and extent of the evidence on psychological interventions among individuals with Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorder (HSD). Materials and methods Eligible studies reported on psychological interventions for individuals of all ages with EDS and/or HSD. All studies published in English were included, with no restrictions to publication year or status. MEDLINE, CINAHL, EMBASE, and PsycINFO were searched. Two reviewers independently screened studies and abstracted data. Results This scoping review included 10 studies reporting on EDS, HSD, or both. Only cohort studies and case studies were identified. Four studies investigated Cognitive Behavioural Therapy (CBT), one investigated Dialectical Behavioural Therapy (DBT), two investigated psychoeducation, two investigated Intensive Interdisciplinary Pain Treatment (IIPT), and one investigated Acceptance Commitment Therapy (ACT). Interventions targeted pain management, self-destructive behaviours, and related psychological issues (e.g., depression/anxiety). Sample sizes were small (n < 50) for most studies and interventions were generally poorly described. Conclusions There is a critical need for high-quality research surrounding psychological interventions for individuals with EDS/HSD. Psychological interventions for these individuals are understudied and existing studies lack validity. Researchers should investigate psychological interventions for individuals with all types of EDS/HSD with high-quality studies to validate findings from the existing studies.https://doi.org/10.1186/s13023-023-02799-yEhlers-Danlos syndromeJoint hypermobilityJoint hypermobility syndromePsychological interventionsCognitive behavioural therapyHypermobility spectrum disorder |
| spellingShingle | Jessica Z. Song Dorothy Luong Estée C. H. Feldman Susan Tran Laure Perrier Kathleen Eubanks Mark Bayley Monika Kastner Maxwell Slepian Sarah E. P. Munce Psychological interventions for individuals with Ehlers-Danlos syndrome and hypermobility spectrum disorder: a scoping review Orphanet Journal of Rare Diseases Ehlers-Danlos syndrome Joint hypermobility Joint hypermobility syndrome Psychological interventions Cognitive behavioural therapy Hypermobility spectrum disorder |
| title | Psychological interventions for individuals with Ehlers-Danlos syndrome and hypermobility spectrum disorder: a scoping review |
| title_full | Psychological interventions for individuals with Ehlers-Danlos syndrome and hypermobility spectrum disorder: a scoping review |
| title_fullStr | Psychological interventions for individuals with Ehlers-Danlos syndrome and hypermobility spectrum disorder: a scoping review |
| title_full_unstemmed | Psychological interventions for individuals with Ehlers-Danlos syndrome and hypermobility spectrum disorder: a scoping review |
| title_short | Psychological interventions for individuals with Ehlers-Danlos syndrome and hypermobility spectrum disorder: a scoping review |
| title_sort | psychological interventions for individuals with ehlers danlos syndrome and hypermobility spectrum disorder a scoping review |
| topic | Ehlers-Danlos syndrome Joint hypermobility Joint hypermobility syndrome Psychological interventions Cognitive behavioural therapy Hypermobility spectrum disorder |
| url | https://doi.org/10.1186/s13023-023-02799-y |
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