Download PDF
Horm Metab Res 2015; 47(05): 380-386
DOI: 10.1055/s-0035-1545273
Review
© Georg Thieme Verlag KG Stuttgart · New York

Disorders of Sex Development: Lessons to be Learned from Studies of Spina Bifida and Craniofacial Conditions

G. N. Holmbeck
1   Department of Psychology, Loyola University Chicago, Chicago, IL, USA
,
C. L. Aspinall
2   Seattle Children’s Hospital, Craniofacial Center, University of Washington School of Social Work Seattle, WA, USA
› Author Affiliations
Further Information

Publication History

received 06 October 2014

accepted 15 January 2015

Publication Date:
26 February 2015 (online)

Also available at
    Permissions and Reprints

Abstract

The purpose of this review is to discuss research methods and clinical management strategies employed with other conditions (i. e., spina bifida and craniofacial conditions) and how these methods and strategies could be applied to youth with disorders of sex development (DSD). The review focuses specifically on the potential overlap between DSD and these other conditions across the following 3 areas: (1) developmentally-oriented theories that underlie the research base for chronic physical conditions; (2) research designs and methodological features that have proved fruitful in these areas; and (3) the potential applicability to DSD of clinical management practices for youth with craniofacial conditions.

Key words

DSD - spina bifida - craniofacial conditions - research design - clinical management
 

  • References

  • 1 CDC. Data and statistics: Neural tube defect ascertainment project. 2014 September 30. Retrieved from http://www.cdc.gov/ncbddd/spinabifida/data.html
    PubMedGoogle Scholar
  • 2 Holmbeck GN, Westhoven V, Phillips WS, Bowers R, Gruse C, Nikolopoulos T, Totura CW, Davison K. A multimethod, multi-informant, and multidimensional perspective on psychosocial adjustment in preadolescents with spina bifida. J Consul Clin Psych 2003; 71: 782-796
    PubMedGoogle Scholar
  • 3 Holmbeck GN, DeLucia C, Essner B, Kelly L, Zebracki K, Friedman D, Jandasek B. Trajectories of psychosocial adjustment in adolescents with spina bifida: A six-year four-wave longitudinal follow-up. J Consul Clin Psych 2010; 78: 511-525
    PubMedGoogle Scholar
  • 4 Dosa NP, Foley JT, Eckrich M, Woodall-Ruff D, Liptak GS. Obesity across the lifespan among persons with spina bifida. Disabil Rehabil 2009; 31: 914-920
    CrossrefPubMedGoogle Scholar
  • 5 CDC. Data and Statistics: Facts about Cleft Lip and Cleft Palate. 2014 October 2. Retrieved from http://www.cdc.gov/ncbddd/birthdefects/CleftLip.html
    PubMedGoogle Scholar
  • 6 American Cleft Palate-Craniofacial Association . Parameters for the Evaluation and Treatment of Patients with Cleft Lip/Palate or Other Craniofacial Anomalies. Cleft Pal Cran J 1993; 30 (Suppl) S1-S16
    PubMedGoogle Scholar
  • 7 Riekert KA, Drotar D. Adherence to medical treatment in pediatric chronic illness: Critical issues and answered questions. In: Drotar D. (ed.). Promoting adherence to medical treatment in chronic childhood illness. Mahwah, NJ: Erlbaum; 2000: 3-32
    Google Scholar
  • 8 Kazak AE, Rourke MT, Navasaria N. Families and other systems in pediatric psychology. In: Roberts MC, Steele RG. (eds.). Handbook of pediatric psychology. 4th ed. New York: Guilford Press; 2009: 656-671
    Google Scholar
  • 9 Wallander JL, Thompson RJ, Alriksson-Schmidt A. Psychosocial adjustment of children with chronic physical conditions. In: Roberts MC, Steele RG. (eds.). Handbook of pediatric psychology. 3rd ed. New York: Guilford Press; 2003: 141-158
    Google Scholar
  • 10 Holmbeck GN, Bruno LF, Jandasek B. Longitudinal research in pediatric psychology: An introduction to the special issue. J Ped Psych 2006; 31: 995-1001
    PubMedGoogle Scholar
  • 11 Loeber R, Farrington DP. Problems and solutions in longitudinal and experimental treatment studies of child psychopathology and delinquency. J Consul Clin Psych 1994; 62: 887-900
    PubMedGoogle Scholar
  • 12 Cicchetti D, Rogosch FA. A developmental psychopathology perspective on adolescence. J Consult Clin Psych 2002; 70: 6-20
    CrossrefPubMedGoogle Scholar
  • 13 Wysocki T, Taylor A, Hough BS, Linscheid TR, Yeates KO, Naglieri JA. Deviation from developmentally appropriate self-care autonomy: Associations with diabetes outcomes. Diabetes Care 1996; 19: 119-125
    CrossrefPubMedGoogle Scholar
  • 14 Friedman D, Holmbeck GN, Jandasek B, Zukerman J, Abad M. Parent functioning in families of preadolescents with spina bifida: Longitudinal implications for child adjustment. J Fam Psych 2004; 18: 609-619
    PubMedGoogle Scholar
  • 15 Reiter-Purtill J, Gerhardt CA, Vannatta K, Passo MH, Noll RB. A controlled longitudinal study of the social functioning of children with juvenile rheumatoid arthritis. J Ped Psych 2003; 28: 17-28
    CrossrefPubMedGoogle Scholar
  • 16 Wade SL, Taylor HG, Drotar D, Stancin T, Yeates KO, Minich NM. Interpersonal stressors and resources as predictors of parental adaptation following pediatric traumatic injury. J Consult Clin Psych 2004; 72: 776-784
    CrossrefPubMedGoogle Scholar
  • 17 Coakley RM, Holmbeck GN, Friedman D, Greenley RN, Thill AW. A longitudinal study of pubertal timing, parent-child conflict, and cohesion in families of young adolescents with spina bifida. J Ped Psych 2002; 27: 461-473
    CrossrefPubMedGoogle Scholar
  • 18 Singer JD, Willett JB. Applied longitudinal data analysis: Modeling change and event occurrence. Oxford, UK: Oxford University Press; 2003
    CrossrefGoogle Scholar
  • 19 Willett JB, Singer JD, Martin NC. The design and analysis of longitudinal studies of development and psychopathology in context: Statistical models and methodological recommendations. Devel Psychopath 1998; 10: 395-426
    PubMedGoogle Scholar
  • 20 Cole DA, Maxwell SE. Testing mediational models with longitudinal data: Questions and tips in the use of structural equation modeling. J Abn Psych 2003; 112: 558-577
    CrossrefPubMedGoogle Scholar
  • 21 Holmbeck GN. Toward terminological, conceptual, and statistical clarity in the study of mediators and moderators: Examples from the child-clinical and pediatric psychology literatures. J Consult Clin Psych 1997; 65: 599-610
    CrossrefPubMedGoogle Scholar
  • 22 Holmbeck GN. Post-hoc probing of significant moderational and mediational effects in studies of pediatric populations. J Ped Psych 2002; 27: 87-96
    CrossrefPubMedGoogle Scholar
  • 23 MacKinnon DP. Introduction to statistical mediation analysis. New York: Erlbaum; 2008
    Google Scholar
  • 24 Rose B, Holmbeck GN, Coakley RM, Franks L. Mediator and moderator effects in developmental and behavioral pediatric research. J Develop Behav Pediatr 2004; 25: 1-10
    PubMedGoogle Scholar
  • 25 Kazdin AE. Research design in clinical psychology. 4th ed. Boston: Allyn and Bacon; 2003
    Google Scholar
  • 26 Mann CJ. Observational research methods. Research design II: Cohort, cross-sectional, and case control studies. Emerg Med J 2003; 20: 54-60
    CrossrefPubMedGoogle Scholar
  • 27 Schkade DA, Kahneman D. Does living in California make people happy? A focusing illusion in judgments of life satisfaction. Psych Sci 1998; 9: 340-346
    CrossrefPubMedGoogle Scholar
  • 28 Smith DM, Schwartz N, Roberts TR, Ubel PA. Why are you calling me? How study introductions change response patterns. Qual Life Res 2006; 15: 621-630
    CrossrefPubMedGoogle Scholar
  • 29 Aspinall CA. Dealing with the prenatal diagnosis of clefting: A parent’s perspective. Cleft Pal Cran J 2002; 39: 183-187
    PubMedGoogle Scholar
  • 30 Endriga MC, Kapp-Simon KA. Psychosocial issues in craniofacial care: State of the art. Cleft Pal Cran J 1999; 36: 3-11
    PubMedGoogle Scholar
  • 31 Hunfeld JA, Tempels A, Passchier J, Hazebroek FW, Tibboel D. Brief report: Parental burden and grief one year after the birth of a child with a congenital anomaly. J Ped Psychiatr 1999; 24: 515-520
    PubMedGoogle Scholar
  • 32 Barnett D, Clements M, Kaplan-Estrin M, McCaskill J, Hill-Hunt K, Butler CM, Schran J, Janisse HC. J Fam Psychol 2006; 20: 100-107
    CrossrefPubMed
  • 33 Patrick DL, Topolski TD, Edwards TC, Aspinall CL, Kapp-Simon KA, Rumsey NJ, Strauss RP, Thomas CR. Measuring the Quality of Life of Youth With Facial Differences. Cleft Pal Cran J 2007; 44: 538-547
    PubMedGoogle Scholar
  • 34 Thomasgard M, Metz WP. The vulnerable child syndrome revisited. Dev and Behavioral Peds 1995; 16: 47-53
    PubMedGoogle Scholar
  • 35 Endriga MC, Jordan JR, Speltz ML. Emotion self-regulation in preschool – aged children with and without orofacial clefts. Dev Behav Peds 2003; 24: 336-344
    PubMedGoogle Scholar
  • 36 Marsh JL. To cut or not to cut? A surgeon’s perspective on surgically shaping children. In: Parens E. (ed.). Surgically Shaping Children: Technology, Ethics and the Pursuit of Nomality. New York: Johns Hopkins Press; 2006: 113-124
    Google Scholar
  • 37 Murray TH. Research on children and the scope of responsible parenthood. In: Murray TH. The Worth of the Child. Los Angeles: University of California Press; 1996: 70-95
    Google Scholar
  • 38 American Academy of Pediatrics . Patient and family centered care and the pediatrician’s role. Pediatrics 2012; 129: 394-404
    CrossrefPubMedGoogle Scholar
  • 39 Aspinall C. Social Work: Assessing family issues and burdens of care. In: Moller K, Glazer L. (eds.). Cleft lip and palate: Interdisciplinary issues and treatment (For clinicians by clinicians). Austin: Pro-Ed; 2008: 39-53
    Google Scholar
  • 40 Cloonan YK, Collett B, Speltz ML, Anderka M, Werler MM. Psychosocial outcomes in children with and without non-syndromic craniosynostosis: Findings from two studies. Cleft Pal Cran J 2013; 50: 406-413
    PubMedGoogle Scholar
  • 41 Edwards TC, Patrick DL, Topolski TD, Aspinall CL, Mouradian WM, Speltz ML. Approaches to craniofacial specific quality of life assessments in adolescents. Cleft Pal Cran J 2005; 42: 19-24
    PubMedGoogle Scholar
  • 42 Kratz L, Uding N, Trahms CM, Villareale N, Kieckherer GM. Managing childhood illness: Parent perspectives and implications for parent-provider relationships. Fam Systems and Hlth 2009; 27: 303-313
    PubMedGoogle Scholar
  • 43 Williams L. The many roles of families in family-centered care: Part III. Ped Nursing 2007; 33: 144-146
    PubMedGoogle Scholar
  • 44 Baratz AB, Sharp MK, Sandberg DE. Disorders of sex development peer support. In Hiort O, Ahmed SF. (eds.). Understanding differences and disorders of sex development (DSD). Basel: Karger; 2014: 99-112
    CrossrefGoogle Scholar
  • 45 Holmbeck GN, Devine KA. Psychological and family functioning in spina bifida. Develop Disabil 2010; 16: 40-46
    PubMedGoogle Scholar
  • 46 Rose BM, Holmbeck GN, Coakley RM, Franks EA. Mediator and moderator effects in developmental and behavioral pediatric research. Devel Beh Ped 2004; 25: 1-10
    PubMedGoogle Scholar