The psychological burden of an initially unexplained illness: Patients with sternocostoclavicular hyperostosis before and after delayed diagnosis

Health and Quality of Life Outcomes

Volumn 8, Issue , 2010, Pages

  van der Kloot, Willem A ^a   Hamdy, Neveen A T ^b   Hafkemeijer, Laurian C S ^a   den Dulk, Femke M C ^a   Chotkan, Sadhna A ^b   van Emmerik, Arnold A P ^c   Kaptein, Ad A ^b  

^a LEIDEN UNIVERSITY   (Netherlands)

^b LEIDEN UNIVERSITY MEDICAL CENTER   (Netherlands)

^c UNIVERSITY OF AMSTERDAM   (Netherlands)

Author keywords

[No Author keywords available]

Indexed keywords

ADULT; AGED; ARTICLE; CONTROLLED STUDY; DELAYED DIAGNOSIS; DISTRESS SYNDROME; FEMALE; HEALTH STATUS; HUMAN; HYPEROSTOSIS; ILLNESS BEHAVIOR; MAJOR CLINICAL STUDY; MALE; PAIN; POSTTRAUMATIC STRESS DISORDER; QUALITY OF LIFE; QUESTIONNAIRE; SELF REPORT; SOCIAL SUPPORT; STRUCTURED INTERVIEW;

ADULT; AGE OF ONSET; AGED; COST OF ILLNESS; FEMALE; HEALTH STATUS; HUMANS; HYPEROSTOSIS, STERNOCOSTOCLAVICULAR; MALE; MIDDLE AGED; NETHERLANDS; QUALITY OF LIFE; QUESTIONNAIRES; RARE DISEASES; SOCIOECONOMIC FACTORS; STRESS DISORDERS, POST-TRAUMATIC; YOUNG ADULT;

EID: 77956478781     PISSN: None     EISSN: 14777525     Source Type: Journal    
DOI: 10.1186/1477-7525-8-97     Document Type: Article

References (49)

1. EURORDIS The voice of 12,000 patients: Experiences and expectations of rare disease patients on diagnosis and care in Europe. 2009, France: EURORDIS, EURORDIS.
2. Editorial Listening to patients with rare diseases. The Lancet 2009, 373:868. Editorial.
3. Van der Kloot WA, Chotkan SA, Kaptein AA, Hamdy NAT. Diagnostic delay in sterno-costo-clavicular hyperostosis: Impact on various aspects of quality of life. Arthritis Care Res 2010, 62:251-257.
4. Sonozaki H, Furasowa S, Seki H, Kurosawa T, Tateishi A, Kabata K. Four cases with symmetrical ossifications between the clavicles and the first ribs on both sides. Kanto J Orthop Traumatol 1974, 5:244-247.
5. Köhler H, Uehlinger E, Kutzner J, Weihrauch TR, Wilbert L, Schuster R. Sterno-kosto-klavikuläre Hyperostose: Ein bisher nicht beschriebenes Krankheitsbild [Sterno-costo-clavicular hyperostosis: A not yet described disorder]. Dtsch Med Wochenschr 1975, 100:1519-1523. 1535-1536, 10.1055/s-0028-1106414, 1149631.
6. Chamot AM, Benhamou CL, Kahn MF, Beeraneck L, Kaplan G, Prost A. Le syndrome Acné Pustulose Hyperostose Ostéite (SAPHO): Résultats d'une enquête nationale 85 observations [The syndrome of Acne Pustulosis Hyperostosis Osteitis (SAPHO): Results of a national survey with 85 observations. Rev Rhum 1987, 54:187-196.
7. Freyschmidt J, Sternberg A. The bullhead sign: scintigraphic pattern of sternocostoclavicular hyperostosis and pustulotic arthroosteitis. Eur Radiol 1998, 8:807-812. 10.1007/s003300050476, 9601969.
8. Jahangier ZN, Jacobs JWG, Bijlsma JWJ. SAPHO-syndroom: gemeenschappelijke noemer voor enkele bot- en huidziekten [SAPHO syndrome: common denominator for some bone and skin diseases]. Ned Tijdschr Geneeskd 1997, 141:764-769.
9. Kalke S, Perera SD, Patel ND, Gordon TE, Dasgupta B. The sternoclavicular syndrome: Experience from a district general hospital and results of a national postal survey. Rheumatology 2001, 40:170-177. 10.1093/rheumatology/40.2.170, 11257153.
10. Taylor HG, Dawes PT. Sterno-costo-clavicular hyperostosis. Brit J Clin Pract 1992, 46:276-278.
11. Hayem G. Valuable lessons from SAPHO syndrome. Joint Bone Spine 2007, 74:123-126. 10.1016/j.jbspin.2006.06.006, 17347017.
12. Kasperczyk A, Freyschmidt J. Pustulotic arthroosteitis: Spectrum of bone lesions with palmoplantar pustuslosis. Radiology 1994, 191:207-211.
13. Sartoris DJ, Schreiman JS, Kerr R, Resnik CS, Resnick D. Sternocostoclavicular hyperostosis: A review and report of 11 cases. Radiology 1986, 158:125-128.
14. Van Doornum S, Wicks I, Barraclough D, McColl G. SAPHO: rare or just not recognized?. Semin Arthritis Rheum 2000, 30:70-77. 10.1053/sarh.2000.8371, 10966214.
15. Miyamoto M, Shirai Y, Nakayama Y, Gembun Y, Kitagawa Y, Nanbu A. A case report of Synovitis Acne Pustulosis Hyperostosis and Osteitis Syndrome presenting with Spondylodiscitis. J Nipp Med Sch 2000, 67:191-197.
16. Davies AM, Marino AJ, Evans N, Grimer RJ, Deshmukh N, Mangham DC. SAPHO-syndrome: 20-year follow-up. Skel Radiol 1999, 28:159-162.
17. Tehlirian C. Synovitis-Acne-Pustulosis-Hyperostosis-Osteitis (SAPHO). Johns Hopkins Rheumatology Rounds Online: Rounds 7 2006, http://www.hopkins-arthritis.org/physician-corner/cme/rheumatology-rounds/sapho_rheumrounds7.html
18. Nettleton S, Watt I, O'Malley L, Duffey P. Understanding the narratives of people who live with medically unexplained illness. Patient Educ Couns 2005, 56:205-210. 10.1016/j.pec.2004.02.010, 15653250.
19. Brewin CR, Andrews B, Rose S, Kirk M. Acute stress disorder and posttraumatic stress disorder in victims of violent crime. Am J Psychiatry 1999, 156:360-366.
20. Ford JD, Campbell KA, Storzbach D, Binder LM, Kent Anger W, Rohlman DS. Posttraumatic stress symptomatology is associated with unexplained illness attributed to Persian Gulf War military service. Psychosom Med 2001, 63:842-849.
21. Jankowsi K. PTSD and physical health. United States Department of Veterans Affairs, National Center for Posttraumatic Stress Disorder., http://www.ptsd.va.gov/professional/pages/ptsd-physical-health.asp
22. Green BL, Rowland JH, Krupnick JL, Epstein SA, Stockton P, Stern NM, Spertus IL, Steakley C. Prevalence of posttraumatic stress disorder in women with breast cancer. Psychosomatics 1998, 39:102-111.
23. Naidich JB, Motta RW. PTSD-related symptoms in women with breast cancer. J Psychother Indep Pract 2000, 1:35-54.
24. Pitman RK, Lanes DM, Williston SK, Guillaume JL, Metzger LJ, Gehr GM, Orr SP. Psychophysiologic assessment of posttraumatic stress disorder in breast cancer patients. Psychosomatics 2001, 42:133-140. 10.1176/appi.psy.42.2.133, 11239126.
25. Jacobsen PB, Sadler IJ, Booth-Jones M, Soety E, Weitzner MA, Fields KK. Predictors of posttraumatic stress disorder symptomatology following bone marrow transplantation for cancer. J Consult Clin Psychol 2002, 70:235-240. 10.1037/0022-006X.70.1.235, 11860050.
26. Boer KR, Van Ruler O, Van Emmerik AAP, Sprangers MA, De Rooij SE, Vroom MB, De Borgie CAJM, Boermeester MA, Reitsma JB, . The Dutch Peritonitis Study Group Factors associated with posttraumatic stress symptoms in a prospective cohort of patients after abdominal sepsis: a nomogram. Intensive Care Medicine 2008, 34:664-674. 10.1007/s00134-007-0941-3, 2271079, 18197398, The Dutch Peritonitis Study Group.
27. Engelhard IM, Van den Hout MA, Arntz A. Posttraumatic stress disorder after pregnancy loss. Gen Hosp Psychiat 2001, 23:62-66.
28. Korenromp MJ, Christiaens GCM, Van den Bout J, Mulder EJH, Hunfeld JAM, Bilardo CM, Offermans JPM, Visser GHA. Long-term psychological consequences of pregnancy termination for fetal abnormality: A cross-sectional study. Prenat Diagn 2005, 25:253-260. 10.1002/pd.1127, 15791682.
29. Van Emmerik AAP, Kamphuis JH, Emmelkamp PMG. Prevalence and prediction of re-experiencing and avoidance after elective surgical abortion: A prospective study. Clin Psychol Psychother 2008, 15:378-385. 10.1002/cpp.586, 19115456.
30. Reynolds JL. Post-traumatic stress disorder after childbirth: the phenomenon of traumatic birth. Can Med Assoc J 1997, 156:831-835.
31. Söderquist J, Wijma B, Thorbert G, Wijma K. Risk factors for pregnancy in post-traumatic stress and depression after childbirth. Brit J Obstet Gynecol 2009, 116:672-680.
32. Olde E, Kleber RJ, Van der Hart O, Pop VJM. Childbirth and posttraumatic stress responses: A validation study of the Dutch Impact of Event Scale - Revised. Eur J Psychol Asses 2006, 22:259-267.
33. Brewin CR, Andrews B, Valentine JD. Meta-analysis of risk factors for posttraumatic stress disorder in trauma-exposed adults. J Consult Clin Psychol 2000, 68:748-766. 10.1037/0022-006X.68.5.748, 11068961.
34. Cluver L, Fincham DS, Seedat S. Posttraumatic stress in AIDS-orphaned children exposed to high levels of trauma: The protective role of perceived social support. J Trauma Stress 2009, 22:106-112. 10.1002/jts.20396, 19319917.
35. Dirkzwager A, Bramsen I, Van der Ploeg H. Social support, coping, life events, and posttraumatic stress symptoms among former peacekeepers: A prospective study. Pers Indiv Differ 2003, 34:1545-1559.
36. Kamphuis JH, Emmelkamp PMG, Bartak A. Individual differences in post-traumatic stress following post-intimate stalking: Stalking severity and psychological variables. Brit J Clin Psychol 2003, 42:145-156.
37. White-Williams C, Grady KL, Wang EC, Naftel DC, Rybarczyk B, Young JB, Pelegrin D, Myers S, Kirklin J, Czerr J, Kobashigawa J, Chait J, Heroux A, Higgins R. The relationship of social support and quality of life 5 to 10 years after heart transplantation [abstract]. J Heart Lung Transpl 2009, 28:S128.
38. Zheng Y, Ye DQ, Pan HF, Li WX, Li LH, Li J, Li XP, Xu JH. Influence of social support on health-related quality of life in patients with systemic lupus erythematosus. Clin Rheumatol 2009, 28:265-269. 10.1007/s10067-008-1033-7, 19002545.
39. Van der Kloot WA, Vertommen H, . (Eds) De MPQ-DLV, een standaard nederlandstalige versie van de McGill Pain Questionnaire: Achtergronden en handleiding [The MPQ-DLV, a standard Dutch language version of the McGill Pain Questionnaire: Background and instructions] 1989, Lisse, The Netherlands: Swets & Zeitlinger, (Eds).
40. Kleber RJ, de Jong E. Dutch version of the Impact of Event Scale - revised. Internal report 1989, Utrecht University, The Netherlands, Department of Clinical Psychology.
41. Timmerman IGH, Emanuels-Zuurveen ES, Emmelkamp PMG. The Social Support Inventory (SSI): A brief scale to assess perceived adequacy of social support. Clin Psychol Psychoth 2000, 7:401-410.
42. Kaptein A, Van Korlaar IM, Scharloo M. De IPQ-K [the Brief Illness Perception Questionnaire]. 2004, http://www.uib.no/ipq
43. Kempen GIJM, Brilman EI, Heyink JW, Ormel J. Het meten van de algemene gezondheidstoestand met de MOS Short-Form General Health Survey (SF-20) [measuring general health by the MOS Short-Form General Health Survey (SF-20)]. 1995, Groningen University, The Netherlands, Noordelijk Centrum voor Gezondheidsvraagstukken.
44. Kraaijenoord E, Van der Kloot WA. Pijnmeting met de MPQ-DLV: een kijkje in de data [Pain measurement with the MPQ-DLV: a look at the data]. Leiden Psychological Reports, PRM 97-03 1997, Leiden University, The Netherlands, Department of Psychology.
45. Sonino N, Ruini C, Navarrini C, Ottolini F, Sirri L, Paoletta A, Fallo F, Boscaro M, Fava GA. Psychosocial impairment in patients treated for pituitary disease: a controlled study. Clin Endocrinol 2007, 67:719-726.
46. Broadbent E, Petrie K, Main J, Weinman J. The Brief Illness Perception Questionnaire. J Psychosom Res 2006, 60:631-637. 10.1016/j.jpsychores.2005.10.020, 16731240.
47. SPSS Data Analysis Examples. Canonical Correlation Analysis. , http://www.ats.ucla.edu/stat/spss/dae/canonical.htm
48. Stevens J. Applied multivariate statistics for the social sciences 2009, Hillsdale, New Jersey: Erlbaum, 4.
49. Tabachnik BG, Fidell LS. Using multivariate statistics 2007, Boston: Allyn & Bacon, 5.