The Dutch patients' perspective on oculopharyngeal muscular dystrophy: A questionnaire study on fatigue, pain and impairments

Neuromuscular Disorders

Volumn 26, Issue 3, 2016, Pages 221-226

  van der Sluijs, Barbara M ^a   Knoop, Hans ^a   Bleijenberg, Gijs ^a   van Engelen, Baziel G M ^a   Voermans, Nicol C ^a  

^a RADBOUD UNIVERSITY MEDICAL CENTER   (Netherlands)

Author keywords

Fatigue; Functional impairments; OPMD; Pain

Indexed keywords

ADL DISABILITY; ADULT; AGED; ARTICLE; BECK DEPRESSION INVENTORY; CLINICAL ARTICLE; CONTROLLED STUDY; CROSS-SECTIONAL STUDY; DISEASE DURATION; DISEASE SEVERITY; DISTRESS SYNDROME; DUTCHMAN; FATIGUE; FEMALE; FUNCTIONAL DISEASE; HUMAN; MALE; MCGILL PAIN QUESTIONNAIRE; MIDDLE AGED; MUSCLE WEAKNESS; OCULOPHARYNGEAL MUSCULAR DYSTROPHY; PAIN; PELVIC GIRDLE; PRIORITY JOURNAL; QUESTIONNAIRE; SICKNESS IMPACT PROFILE; SOCIAL PARTICIPATION; SYMPTOM CHECKLIST 90; WALKING DIFFICULTY; DAILY LIFE ACTIVITY; MUSCULAR DYSTROPHY, OCULOPHARYNGEAL; NETHERLANDS; PSYCHOLOGY;

ACTIVITIES OF DAILY LIVING; ADULT; AGED; FATIGUE; FEMALE; HUMANS; MALE; MIDDLE AGED; MUSCLE WEAKNESS; MUSCULAR DYSTROPHY, OCULOPHARYNGEAL; NETHERLANDS; PAIN; SOCIAL PARTICIPATION; SURVEYS AND QUESTIONNAIRES;

EID: 84959315699     PISSN: 09608966     EISSN: 18732364     Source Type: Journal    
DOI: 10.1016/j.nmd.2015.12.009     Document Type: Article

References (31)

1. Raz V., Butler-Browne G., van Engelen B., et al. 191st ENMC international workshop: recent advances in oculopharyngeal muscular dystrophy research: from bench to bedside 8-10 June 2012, Naarden, The Netherlands. Neuromuscul Disord 2013, 23:516-523.
2. Brais B., Rouleau G.A., Bouchard J.P., et al. Oculopharyngeal muscular dystrophy. Semin Neurol 1999, 19:59-66.
3. Brais B. Oculopharyngeal muscular dystrophy: a polyalanine myopathy. Curr Neurol Neurosci Rep 2009, 9:76-82.
4. R 1993-2015, University of Washington, Seattle, WA, Seattle, 2001 Mar 08; updated 2014 Feb 20. R.A. Pagon, M.P. Adam, H.H. Ardinger (Eds.).
5. Becher M.W., Morrison L., Davis L.E., et al. Oculopharyngeal muscular dystrophy in Hispanic New Mexicans. JAMA 2001, 286:2437-2440.
6. Jensen M.P., Hoffman A.J., Stoelb B.L., et al. Chronic pain in persons with myotonic dystrophy and facioscapulohumeral dystrophy. Arch Phys Med Rehabil 2008, 89:320-328.
7. Kalkman J.S., Schillings M.L., van der Werf S.P., et al. Experienced fatigue in facioscapulohumeral dystrophy, myotonic dystrophy, and HMSN-I. J Neurol Neurosurg Psychiatry 2005, 76:1406-1409.
8. Albresch R.T., Carter G.T., Jensen M.P., et al. Assessment of pain and health-related quality of life in slowly progressive neuromuscular disease. Am J Hosp Palliat Care 2002, 19:39-48.
9. Kalkman J.S., Schillings M.L., Zwarts M.J., et al. Psychiatric disorders appear equally in patients with myotonic dystrophy, facioscapulohumeral dystrophy and hereditary motor and sensory neuropathy type I. Acta Neurol Scand 2007, 115:265-270.
10. Krause-Bachand J., Koopman W. Living with oculopharyngeal muscular dystrophy: a phenomenological study. Can J Neurosci Nurs 2008, 30:35-39.
11. Lampe J.B., Schäfer J., Gärtner H.J., et al. Proximal weakness and exercise-induced pain as initial symptom of oculopharyngeal muscular dystrophy. Nervenartz 2001, 72:652-655.
12. Rivera D., Mejia-Lopez H., Pompa-Mera E.N., et al. Two different PABPN1 expanded alleles in a Mexican population with oculopharyngeal muscular dystrophy arising from independent founder effects. Br J Ophtalmol 2008, 92:998-1002.
13. Van der Kooi E.L., Kalkman J.S., Lindeman E., et al. Effects of training and albuterol on pain and fatigue in facioscapulohumeral muscular dystrophy. J Neurol 2007, 254:931-940.
14. Vercoulen J.H., Swanink C.M., Galama J.M., et al. The persistence of fatigue in chronic fatigue syndrome and multiple sclerosis: development of a model. J Psychosom Res 1998, 45:507-517.
15. Servaes P., Verhagen S., Bleijenberg G. Determinants of chronic fatigue in disease-free breast cancer patients:a cross-sectional study. Ann Oncol 2002, 13:589-598.
16. Vercoulen J.H.M.M., Alberts M., Bleijenberg G. De checklist individual strength (CIS). Gedragstherapie 1999, 32:131-136.
17. Melzack R. McGill Pain questionnaire - major properties and scoring methods. Pain 1975, 1:277-299.
18. Jacobs H.M., Luttik A., Touw-Otten F.W., et al. De 'sickness impact profile'; resultaten van een valideringsonderzoek van de Nederlandse versie. Ned Tijdschr Geneeskd 1990, 134:1950-1954.
19. Arindell W.A., Ettema J.H.M. SCL-90. Handleiding bij multidimensionele psychopathologie-indicator 1986, Swets en Zeitlinger BV, Amsterdam.
20. Beck A.T., Guth D., Steer R.A., et al. Screening for major depression disorders in medical inpatients with the Beck Depression Inventory for Primary Care. Behav Res Ther 1997, 35:785-791.
21. Oldenmenger W.H., de Raaf P.J., de Klerk C., et al. Cut point on 0-10 numeric rating scales for symptoms incuded in the Edmonton Symptom Assessement Scale in cancer patients: a systematic review. J Pain Symptom Manage 2013, 45:1083-1093.
22. Ettema J.H.M., Arrindell W.A. SCL-90. Guide for a multidimensional psychopathology indicator 2003, Swets Zeitlinger, Lisse.
23. Servaes P., Verhagen C.A., Bleijenberg G. Relations between fatigue, neuropsychological functioning, and physical activity after treatment for breast carcinoma: daily self-report and objective behavior. Cancer 2002, 95:2017-2026.
24. Voermans N., Knoop H., van de Kamp N., et al. Fatigue is a frequent and clinically relevant problem in Ehlers-Danlos Syndrome. Semin Arthritis Rheum 2010, 40:267-274.
25. Voet N., Bleijenberg G., Hendriks J., et al. Both aerobic exercise and cognitive-behavioral therapy reduce chronic fatigue in FSHD. Neurology 2014, 83:1914-1922.
26. Smits B.W., Van der Sluijs B.M., Van Engelen B.G. The astrologist's posture: a useful clinical observation. J Neurol Neurosurg Psychiatry 2011, 82:164.
27. Kraaijenoord E., van der Kloot W.A. Pijnmeting met de mpq-dlv: een kijkje in de data. Leiden Psychological Reports prm 97-3 1997, Leiden University, Department of Psychology, Leiden.
28. Brais B., Rouleau G.A., Sanson M., et al. Oculopharynegal muscular dystrophy revisited: diagnostic criteria an variability in phenotype. Neurology 1993, 43:A201.
29. Van der Sluijs B.M., Hoefsloot L.H., Padberg G.W., et al. Oculopharyngeal muscular dystrophy with limb girdle weakness as major complaint. J Neurol 2003, 250:1307-1312.
30. Youssof S., Schrader R., Bear D., et al. Hip Flexion weakness is associated with impaired mobility in oculopharyngeal muscular dystrophy: a retrospective study with implications for trail design. Neuromuscul Disord 2015, 25:238-246.
31. Egede L.E. Major depression in individuals with chronic medical disorders: prevalence, correlates and associations with health resource utilization, lost productivity and functional disability. Gen Hosp Psychiatry 2007, 29:409-416.