Mental health in adults living with arthrogryposis multiplex congenita.
adults
arthrogryposis
community
depression
fatigue
multiplex congenita
occupation
Journal
American journal of medical genetics. Part C, Seminars in medical genetics
ISSN: 1552-4876
Titre abrégé: Am J Med Genet C Semin Med Genet
Pays: United States
ID NLM: 101235745
Informations de publication
Date de publication:
06 2023
06 2023
Historique:
revised:
10
04
2023
received:
29
03
2023
accepted:
13
04
2023
medline:
22
6
2023
pubmed:
27
4
2023
entrez:
27
4
2023
Statut:
ppublish
Résumé
Little is known about the mental well-being of adults living with arthrogryposis multiplex congenita (AMC). The objectives of this study were to determine the incidence of depression in an international population of adults with AMC and to identify variables independently associated with depression. This cross-sectional study used independent samples t-test and hierarchical multiple regression. The mean Hospital Anxiety and Depression Scale-depression (HADS-D) score of our sample, which included 60 adults with AMC, was 4.0 ± 3.6, with 19% having some signs of depression. Occupation status, age, sex, physical independence, environmental factors, anxiety, and fatigue explained 52.2% of the variance in HADS-D. The prevalence of depression in an adult sample of individuals with AMC is similar to that of the general adult population in the United States. Beyond direct interventions to ameliorate depression, rehabilitation clinicians may also consider treatments and interventions to decrease anxiety and reduce fatigue and environmental barriers.
Identifiants
pubmed: 37102433
doi: 10.1002/ajmg.c.32042
doi:
Types de publication
Journal Article
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
Pagination
139-146Subventions
Organisme : CIHR
Pays : Canada
Informations de copyright
© 2023 The Authors. American Journal of Medical Genetics Part C: Seminars in Medical Genetics published by Wiley Periodicals LLC.
Références
Alschuler, K. N., Jensen, M. P., Sullivan-Singh, S. J., Borson, S., Smith, A. E., & Molton, I. R. (2013). The association of age, pain, and fatigue with physical functioning and depressive symptoms in persons with spinal cord injury. The Journal of Spinal Cord Medicine, 36(5), 483-491. https://doi.org/10.1179/2045772312Y.0000000072
Altiok, H., Flanagan, A., Krzak, J. J., & Hassani, S. (2019). Quality of life, satisfaction with life, and functional mobility of young adults with arthrogryposis after leaving pediatric care. American Journal of Medical Genetics, Part C: Seminars in Medical Genetics, 181(3), 461-468. https://doi.org/10.1002/ajmg.c.31717
Anton, H. A., Miller, W. C., & Townson, A. F. (2008). Measuring fatigue in persons with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 89(3), 538-542. https://doi.org/10.1016/j.apmr.2007.11.009
Bakshi, R., Shaikh, Z. A., Miletich, R. S., Czarnecki, D., Dmochowski, J., Henschel, K., Janardhan, V., Dubey, N., & Kinkel, P. R. (2000). Fatigue in multiple sclerosis and its relationship to depression and neurologic disability. Multiple Sclerosis, 6(3), 181-185. https://doi.org/10.1191/135245800701566052
Beaton, D. E., Tang, K., Gignac, M. A. M., Lacaille, D., Badley, E. M., Anis, A. H., & Bombardier, C. (2010). Reliability, validity, and responsiveness of five at-work productivity measures in patients with rheumatoid arthritis or osteoarthritis. Arthritis Care & Research, 62(1), 28-37. https://doi.org/10.1002/acr.20011
Bjelland, I., Dahl, A. A., Haug, T. T., & Neckelmann, D. (2002). The validity of the hospital anxiety and depression scale: An updated literature review. Journal of Psychosomatic Research, 52(2), 69-77. https://doi.org/10.1016/S0022-3999(01)00296-3
Branco, J. C., Rodrigues, A. M., Gouveia, N., Eusébio, M., Ramiro, S., Machado, P. M., da Costa, L. P., Mourão, A. F., Silva, I., Laires, P., Sepriano, A., Araújo, F., Gonçalves, S., Coelho, P. S., Tavares, V., Cerol, J., Mendes, J. M., Carmona, L., & Canhão, H. (2016). Prevalence of rheumatic and musculoskeletal diseases and their impact on health-related quality of life, physical function and mental health in Portugal: Results from EpiReumaPt-A national health survey. RMD Open, 2(1), e000166. https://doi.org/10.1136/rmdopen-2015-000166
Covic, T., Tyson, G., Spencer, D., & Howe, G. (2006). Depression in rheumatoid arthritis patients: Demographic, clinical, and psychological predictors. Journal of Psychosomatic Research, 60(5), 469-476. https://doi.org/10.1016/j.jpsychores.2005.09.011
Craig, A., Tran, Y., Siddall, P., Wijesuriya, N., Lovas, J., Bartrop, R., & Middleton, J. (2013). Developing a model of associations between chronic pain, depressive mood, chronic fatigue, and self-efficacy in people with spinal cord injury. The Journal of Pain, 14(9), 911-920. https://doi.org/10.1016/j.jpain.2013.03.002
Crawford, J. R., Henry, J. D., Crombie, C., & Taylor, E. P. (2001). Normative data for the HADS from a large non-clinical sample. British Journal of Clinical Psychology, 40(4), 429-434. https://doi.org/10.1348/014466501163904
Cree, R. A., Okoro, C. A., Zack, M. M., & Carbone, E. (2020). Frequent mental distress among adults, by disability status, disability type, and selected characteristics-United States, 2018. Morbidity and Mortality Weekly Report, 69(36), 1238-1243. https://doi.org/10.15585/mmwr.mm6936a2
Cuff, L., Fann, J., Bombardier, C., Graves, D., & Kalpakjian, C. (2014). Depression, pain intensity, and interference in acute spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 20(1), 32-39. https://doi.org/10.1310/sci2001-32
Dai, S., Dieterich, K., Jaeger, M., Wuyam, B., Jouk, P. S., & Pérennou, D. (2018). Disability in adults with arthrogryposis is severe, partly invisible, and varies by genotype. Neurology, 90(18), e1596-e1604. https://doi.org/10.1212/WNL.0000000000005418
Dicianno, B. E., Kinback, N., Bellin, M. H., Chaikind, L., Buhari, A. M., Holmbeck, G. N., Andrew Zabel, T., Donlan, R. M., & Collins, D. M. (2015). Depressive symptoms in adults with spina bifida. Rehabilitation Psychology, 60(3), 246-253. https://doi.org/10.1037/rep0000044
Eriksson, M., Jylli, L., Villard, L., Kroksmark, A. K., & Bartonek, Å. (2018). Health-related quality of life and orthosis use in a Swedish population with arthrogryposis. Prosthetics and Orthotics International, 42(4), 402-409. https://doi.org/10.1177/0309364618774059
Fairbank, J. C. T., & Pynsent, P. B. (2000). The oswestry disability index. Spine, 25(22), 2940-2953. https://doi.org/10.1097/00007632-200011150-00017
Fiske, A., Wetherell, J. L., & Gatz, M. (2009). Depression in older adults. Annual Review of Clinical Psychology, 5(1), 363-389. https://doi.org/10.1146/annurev.clinpsy.032408.153621
Forwell, S. J., Silverberg, N. D., Anton, H. A., Imam, B., Miller, W. C., Townson, A. F., & Diab, K. J. (2017). Fatigue, pain, and depression: An invisible triad among persons with spinal cord injury. Physical Therapy Reviews, 22(1-2), 7-11. https://doi.org/10.1080/10833196.2016.1266728
Gignac, M. A. M., Badley, E. M., Lacaille, D., Cott, C. C., Adam, P., & Anis, A. H. (2004). Managing arthritis and employment: Making arthritis-related work changes as a means of adaptation. Arthritis Care and Research, 51(6), 909-916. https://doi.org/10.1002/art.20822
Gignac, M. A. M., Cao, X., Lacaille, D., Anis, A. H., & Badley, E. M. (2008). Arthritis-related work transitions: A prospective analysis of reported productivity losses, work changes, and leaving the labor force. Arthritis and Rheumatism, 59(12), 1805-1813. https://doi.org/10.1002/art.24085
Hall, J. G. (2013). Arthrogryposes (multiple congenital contractures). In Emery and Rimoin's principles and practice of medical genetics (pp. 1-101). Elsevier. https://doi.org/10.1016/B978-0-12-383834-6.00168-3
Hall, J. G. (2014). Arthrogryposis (multiple congenital contractures): Diagnostic approach to etiology, classification, genetics, and general principles. European Journal of Medical Genetics, 57(8), 464-472. https://doi.org/10.1016/j.ejmg.2014.03.008
Hall, J. G. (2021). The mystery of monozygotic twinning I: What can Amyoplasia tell us about monozygotic twinning and the possible role of twin-twin transfusion? American Journal of Medical Genetics, Part A, 185, 1816. https://doi.org/10.1002/ajmg.a.62172
January, A. M., Zebracki, K., Chlan, K. M., & Vogel, L. C. (2014). Symptoms of depression over time in adults with pediatric-onset spinal cord injury. Archives of Physical Medicine and Rehabilitation, 95(3), 447-454. https://doi.org/10.1016/j.apmr.2013.11.011
Jones, T., Miller, R., Street, J. T., & Sawatzky, B. (2019). Validation of the Oswestry Disability Index for pain and disability in arthrogryposis multiplex congenita. Annals of Physical and Rehabilitation Medicine, 62(2), 92-97. https://doi.org/10.1016/j.rehab.2018.05.1319
Kessler, R. C., Sampson, N. A., Berglund, P., Gruber, M. J., Al-Hamzawi, A., Andrade, L., Bunting, B., Demyttenaere, K., Florescu, S., de Girolamo, G., Gureje, O., He, Y., Hu, C., Huang, Y., Karam, E., Kovess-Masfety, V., Lee, S., Levinson, D., Medina Mora, M. E., … Wilcox, M. A. (2015). Anxious and non-anxious major depressive disorder in the World Health Organization World Mental Health Surveys. Epidemiology and Psychiatric Sciences, 24(3), 210-226. https://doi.org/10.1017/S2045796015000189
Kroencke, D. C., Lynch, S. G., & Denney, D. R. (2000). Fatigue in multiple sclerosis: Relationship to depression, disability, and disease pattern. Multiple Sclerosis, 6(2), 131-136. https://doi.org/10.1177/135245850000600213
Kruitwagen-van Reenen, E. T., van der Pol, L., Schröder, C., Wadman, R. I., van den Berg, L. H., Visser-Meily, J. M. A., & Post, M. W. M. (2018). Social participation of adult patients with spinal muscular atrophy: Frequency, restrictions, satisfaction, and correlates. Muscle and Nerve, 58(6), 805-811. https://doi.org/10.1002/mus.26201
Kruitwagen-van Reenen, E. T., Wadman, R. I., Visser-Meily, J. M., van den Berg, L. H., Schröder, C., & van der Pol, W. L. (2016). Correlates of health related quality of life in adult patients with spinal muscular atrophy. Muscle and Nerve, 54(5), 850-855. https://doi.org/10.1002/mus.25148
Krupp, L. B., Larocca, N. G., Muir Nash, J., & Steinberg, A. D. (1989). The fatigue severity scale: Application to patients with multiple sclerosis and systemic lupus erythematosus. Archives of Neurology, 46(10), 1121-1123. https://doi.org/10.1001/archneur.1989.00520460115022
Laquerriere, A., Jaber, D., Abiusi, E., Maluenda, J., Mejlachowicz, D., Vivanti, A., Dieterich, K., Stoeva, R., Quevarec, L., Nolent, F., Biancalana, V., Latour, P., Sternberg, D., Capri, Y., Verloes, A., Bessieres, B., Loeuillet, L., Attie-Bitach, T., Martinovic, J., … Melki, J. (2022). Phenotypic spectrum and genomics of undiagnosed arthrogryposis multiplex congenita. Journal of Medical Genetics, 59(6), 559-567. https://doi.org/10.1136/jmedgenet-2020-107595
Li, X., Gignac, M. A. M., & Anis, A. H. (2006). Workplace, psychosocial factors, and depressive symptoms among working people with arthritis: A longitudinal study. Journal of Rheumatology, 33(9), 1849-1855.
Lowry, R. B., Sibbald, B., Bedard, T., & Hall, J. G. (2010). Prevalence of multiple congenital contractures including arthrogryposis multiplex congenita in Alberta, Canada, and a strategy for classification and coding. Birth Defects Research Part A-Clinical and Molecular Teratology, 88(12), 1057-1061. https://doi.org/10.1002/bdra.20738
Mahoney, F. I., & Barthel, D. W. (1965). Functional evaluation: The Barthel Index. Maryland State Medical Journal, 14, 61-65.
Matcham, F., Norton, S., Steer, S., & Hotopf, M. (2016). Usefulness of the SF-36 Health Survey in screening for depressive and anxiety disorders in rheumatoid arthritis. BMC Musculoskeletal Disorders, 17(1), 224. https://doi.org/10.1186/s12891-016-1083-y
Morganti, B., Scivoletto, G., Ditunno, P., Ditunno, J. F., & Molinari, M. (2005). Walking index for spinal cord injury (WISCI): Criterion validation. Spinal Cord, 43(1), 27-33. https://doi.org/10.1038/sj.sc.3101658
Mortenson, W. B., Routhier, F., Mahmood, A., Prescott, M., Labbé, D., Martin Ginis, K. A., & Miller, W. C. (2022). Predictors of psychological distress and confidence negotiating physical and social environments among mobility device users. American Journal of Physical Medicine & Rehabilitation, 101(4), 324-330. https://doi.org/10.1097/PHM.0000000000001816
Nouraei, H., Sawatzky, B., MacGillivray, M., & Hall, J. (2017). Long-term functional and mobility outcomes for individuals with arthrogryposis multiplex congenita. American Journal of Medical Genetics, Part A, 173(5), 1270-1278. https://doi.org/10.1002/ajmg.a.38169
Rose, M. R., Sadjadi, R., Weinman, J., Akhtar, T., Pandya, S., Kissel, J. T., & Jackson, C. E. (2012). Role of disease severity, illness perceptions, and mood on quality of life in muscle disease. Muscle & Nerve, 46(3), 351-359. https://doi.org/10.1002/mus.23320
Ryan, S., & McGuire, B. (2016). Psychological predictors of pain severity, pain interference, depression, and anxiety in rheumatoid arthritis patients with chronic pain. British Journal of Health Psychology, 21(2), 336-350. https://doi.org/10.1111/bjhp.12171
Saurí, J., Chamarro, A., Gilabert, A., Gifre, M., Rodriguez, N., Lopez-Blazquez, R., Curcoll, L., Benito-Penalva, J., & Soler, D. (2017). Depression in individuals with traumatic and nontraumatic spinal cord injury living in the community. Archives of Physical Medicine and Rehabilitation, 98(6), 1165-1173. https://doi.org/10.1016/j.apmr.2016.11.011
Sawatzky, B., Dahan-Oliel, N., Davison, A. M., Hall, J., Van Bosse, H., & Mortenson, W. B. (2019). Development of an online registry for adults with arthrogryposis multiplex congenita: A protocol paper. American Journal of Medical Genetics, Part C: Seminars in Medical Genetics, 181(3), 454-460. https://doi.org/10.1002/ajmg.c.31706
Sawatzky, B., Jones, T., Miller, R., & Noureai, H. (2019). The relationship between joint surgery and quality of life in adults with arthrogryposis: An international study. American Journal of Medical Genetics, Part C: Seminars in Medical Genetics, 181(3), 469-473. https://doi.org/10.1002/ajmg.c.31720
Scivoletto, G., Petrelli, A., Di Lucente, L., & Castellano, V. (1997). Psychological investigation of spinal cord injury patients. Spinal Cord, 35(8), 516-520. https://doi.org/10.1038/sj.sc.3100437
Sinikallio, S., Aalto, T., Airaksinen, O., Herno, A., Kröger, H., Savolainen, S., Turunen, V., & Viinamäki, H. (2006). Depression and associated factors in patients with lumbar spinal stenosis. Disability and Rehabilitation, 28(7), 415-422. https://doi.org/10.1080/09638280500192462
Tang, K., Beaton, D. E., Boonen, A., Gignac, M. A. M., & Bombardier, C. (2011). Measures of work disability and productivity: Rheumatoid Arthritis Specific Work Productivity Survey (WPS-RA), Workplace Activity Limitations Scale (WALS), Work Instability Scale for Rheumatoid Arthritis (RA-WIS), Work Limitations Questionnaire (WLQ), and Work Productivity and Activity Impairment Questionnaire (WPAI). Arthritis Care & Research, 63(S11), S337-S349. https://doi.org/10.1002/acr.20633
van de Port, I., Kwakkel, G., Bruin, M., & Lindeman, E. (2007). Determinants of depression in chronic stroke: A prospective cohort study. Disability and Rehabilitation, 29(5), 353-358. https://doi.org/10.1080/09638280600787047
Villarroel, M. A., & Terlizzi, E. P. (2020). Symptoms of depression among adults: United States, 2019. National Center for Health Statistics Data Brief, 379, 1-8.
Walker, N., Mellick, D., Brooks, C. A., & Whiteneck, G. G. (2003). Measuring participation across impairment groups using the Craig handicap assessment reporting technique. American Journal of Physical Medicine & Rehabilitation, 82(12), 936-941. https://doi.org/10.1097/01.PHM.0000098041.42394.9A
Wall, L. B., Vuillerman, C., Miller, P. E., Bae, D. S., & Goldfarb, C. A. (2020). Patient-reported outcomes in arthrogryposis. Journal of Pediatric Orthopaedics, 40(7), 357-360. https://doi.org/10.1097/BPO.0000000000001527
Wang, K., Manning, R. B., Bogart, K. R., Adler, J. M., Nario-Redmond, M. R., Ostrove, J. M., & Lowe, S. R. (2022). Predicting depression and anxiety among adults with disabilities during the COVID-19 pandemic. Rehabilitation Psychology, 67, 179-188. https://doi.org/10.1037/rep0000434
Whiteneck, G. G., Charlifue, S. W., Gerhart, K. A., Overholser, J. D., & Richardson, G. N. (1992). Quantifying handicap: A new measure of long-term rehabilitation outcomes. Archives of Physical Medicine and Rehabilitation, 73(6), 519-526. https://doi.org/10.5555/uri:pii:000399939290185Y
Whiteneck, G. G., Harrison-Felix, C. L., Mellick, D. C., Brooks, C. A., Charlifue, S. B., & Gerhart, K. A. (2004). Quantifying environmental factors: A measure of physical, attitudinal, service, productivity, and policy barriers. Archives of Physical Medicine and Rehabilitation, 85(8), 1324-1335. https://doi.org/10.1016/j.apmr.2003.09.027
Wilson Van Voorhis, C. R., & Morgan, B. L. (2007). Understanding power and rules of thumb for determining sample sizes. Tutorials in Quantitative Methods for Psychology, 3(2), 43-50. https://doi.org/10.20982/tqmp.03.2.p043
Wood, B., Van Der Mei, I. A. F., Ponsonby, A. L., Pittas, F., Quinn, S., Dwyer, T., Lucas, R. M., & Taylor, B. V. (2013). Prevalence and concurrence of anxiety, depression and fatigue over time in multiple sclerosis. Multiple Sclerosis Journal, 19(2), 217-224. https://doi.org/10.1177/1352458512450351
Woolrich, R. A., Kennedy, P., & Tasiemski, T. (2006). A preliminary psychometric evaluation of the Hospital Anxiety and Depression Scale (HADS) in 963 people livingwith a spinal cord injury. Psychology, Health & Medicine, 11(1), 80-90. https://doi.org/10.1080/13548500500294211
Zhang, L., Sui, M., Yan, T., You, L., Li, K., & Gao, Y. (2017). A study in persons later after stroke of the relationships between social participation, environmental factors and depression. Clinical Rehabilitation, 31(3), 394-402. https://doi.org/10.1177/0269215516641300
Zigmond, A. S., & Snaith, R. P. (1983). The hospital anxiety and depression scale. Acta Psychiatrica Scandinavica, 67(6), 361-370. https://doi.org/10.1111/j.1600-0447.1983.tb09716.x