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Psychosocial Effects of Pediatric Bone Tumors and Recommendations for Supportive Care

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Part of the book series: Pediatric Oncology ((PEDIATRICO))

Abstract

The diagnosis of a bone tumor in childhood is a significant stressor that has implications for the psychosocial well-being of the entire family from diagnosis to survivorship and/or end of life. In general, many children with cancer adjust well over the first year, but there is greater risk for parent distress, particularly among mothers. Risk for psychosocial difficulties is also elevated for parents and siblings who are bereaved. Supportive care should be interdisciplinary and evidence-based to address information needs, decision making, adjustment, and long-term challenges. Consideration of the family system and developmental context of the diagnosis and treatment is important. Because the vast majority of research to date has not focused on outcomes for families of children with bone tumors specifically, implications for future research are also described.

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References

  • Alderfer MA, Kazak AE (2006) Family issues when a child is on treatment for cancer. In: Brown RT (ed) Comprehensive handbook of childhood cancer and sickle cell disease: a biopsychosocial approach. Oxford University Press, New York

    Google Scholar 

  • Alderfer MA, Long KA, Lown EA et al (2010) Psychosocial adjustment of siblings of children with cancer: a systematic review. Psychooncology 19:789–805

    Article  PubMed  Google Scholar 

  • Arnett JJ (2000) Emerging adulthood: a theory of development from the late teens through the twenties. Am Psychol 55:469–480

    Article  CAS  PubMed  Google Scholar 

  • Arnett JJ (2007) Emerging adulthood: what is it good for? Child Dev Perspect 1:68–73

    Article  Google Scholar 

  • Barakat LP, Alderfer MA, Kazak AE (2006) Posttraumatic growth in adolescent survivors of cancer and their mothers and fathers. Special issue: posttraumatic stress related to pediatric illness and injury. J Pediatr Psychol 31:413–419

    Google Scholar 

  • Birenbaum LK, Robinson MA, Phillips DS et al (1989) The response of children to the dying and death of a sibling. Omega 20:213–228

    Google Scholar 

  • Brennan, PA, Hammen, C, Katz, AR et al. (2002) Maternal depression, paternal psychopathology, and adolescent diagnostic outcomes. Journal of Consulting and Clinical Psychology 70:1075–1085

    Article  PubMed  Google Scholar 

  • Buhl HM (2007) Well-being and the child-parent relationship at the transition from university to work life. J Adolesc Res 22:550–571

    Article  Google Scholar 

  • Carter PA (2003) Family caregivers’ sleep loss and depression over time. Cancer Nurs 26:253–259

    Article  PubMed  Google Scholar 

  • Chisholm L, Hurrelmann K (1995) Adolescence in modern Europe: pluralized transition patterns and their implications for personal and social risk. J Adolesc 18:129–158

    Article  Google Scholar 

  • Christ GH, Lane JM, Marcove R (1996) Psychosocial adaptation of long-term survivors of bone sarcoma. J Psychosoc Oncol 13:1–22

    Article  Google Scholar 

  • Cicchetti D, Rogosch FA (2002) A developmental psychopathology perspective on adolescence. J Counsulting Clin Psychol 70:6–20

    Article  Google Scholar 

  • Compas BE, Jaser SS, Dunn MJ et al (2012) Coping with chronic illness in childhood and adolescence. Annu Rev Clin Psychol 8:15.1–15.26

    Article  Google Scholar 

  • Connor-Smith JK, Compas BE, Wadsworth ME et al (2000) Responses to stress in adolescence: measurement of coping and involuntary stress responses. J Consult Clin Psychol 68:976–992

    Article  CAS  PubMed  Google Scholar 

  • De Boer AG, Verbeek JH, Van Dijk FJ (2006) Adult survivors of childhood cancer and unemployment: a metaanalysis. Cancer 107:1–11

    Article  PubMed  Google Scholar 

  • Dolgin MJ, Phipps S, Fairclough DL et al (2007) Trajectories of adjustment in mothers of children with newly diagnosed cancer: a natural history investigation. J Pediatr Psychol 32:771–782

    Article  PubMed  Google Scholar 

  • Drotar D (1997) Relating parent and family functioning to the psychological adjustment of children with chronic health conditions: what have we learned? What do we need to know? J Pediatr Psychol 22:149–165

    Article  CAS  PubMed  Google Scholar 

  • Dumith SC, Gigante DP, Domingues MR et al (2011) Physical activity change during adolescence: a systematic review and a pooled analysis. Int J Epidemiol 40:685–698

    Article  PubMed  Google Scholar 

  • Eiser C, Hill JJ, Vance YH (2000) Examining the psychological consequences of surviving childhood cancer: systematic review as a research method in pediatric psychology. J Pediatr Psychol 25:449–460

    Article  CAS  PubMed  Google Scholar 

  • Felder-Puig R, Formann AK, Mildner A et al (1998) Quality of life and psychosocial adjustment of young patients after treatment of bone cancer. Cancer 83:69–75

    Article  CAS  PubMed  Google Scholar 

  • Feldman SS, Elliott GR (1993) At the threshold: the developing adolescent. Harvard University Press, Cambridge

    Google Scholar 

  • Field MJ, Behrman RE (eds) (2003) When children die: improving palliative and end-of-life care for children and their families. Institute of Medicine, National Academies Press, Washington, DC

    Google Scholar 

  • Foster TL, Gilmer MJ, Davies B et al (2009) Bereaved parents’ and siblings’ reports of legacies created by children with cancer. J Pediatr Oncol Nurs 26:369–376

    Article  PubMed Central  PubMed  Google Scholar 

  • Gaab EM, Owens GR, Macleod RD (2014) Siblings caring for and about pediatric palliative care patients. J Palliat Med 17:62–67

    Article  PubMed  Google Scholar 

  • Gedaly-Duff V, Lee KA, Nail LM et al (2006) Pain, sleep disturbance, and fatigue in children with leukemia and their parents: a pilot study. Oncol Nurs Forum 33:614–646

    Article  Google Scholar 

  • Gibbons FX, Kingsbury JH, Gerrard M (2012) Social-psychological theories and adolescent health risk behavior. Soc Personal Psychol Compass 6:170–183

    Article  Google Scholar 

  • Gurney JG, Krull KR, Kadan-Lottick NS et al (2009) Social outcomes in the childhood cancer survivor study cohort. J Clin Oncol 27:2390–2395

    Article  PubMed Central  PubMed  Google Scholar 

  • Hammen, C, Brennan, PA & Shih, JH (2004) Family discord and stress predictors of depression and other disorders in adolescent children of depressed and nondepressed women. Journal of the American Academy of Child & Adolescent Psychiatry 43:994–1002

    Article  Google Scholar 

  • Helgeson VS, Reynolds KA, Tomich PL (2006) Meta-analytic review of benefit finding and growth. J Consult Clin Psychol 74:797–816

    Article  PubMed  Google Scholar 

  • Hogan NS, Desantis L (1996) Adolescent sibling bereavement: toward a new theory. In: CORR CA, BALK DE (eds) Handbook of adolescent death and bereavement. Springer, New York

    Google Scholar 

  • Hogan NS, Greenfield DB (1991) Adolescent sibling bereavement: symptomatology in a large community sample. J Adolesc Res 6:97–112

    Article  Google Scholar 

  • Hogan NS, Schmidt LA (2002) Testing the grief to personal growth model using structural equation modeling. Death Stud 26:615–634

    Article  PubMed  Google Scholar 

  • Hollen PJ, Hobbie WL (1996) Decision making and risk behaviors of cancer-surviving adolescents and their peers. J Pediatr Oncol Nurs 13:121–134

    CAS  PubMed  Google Scholar 

  • Holmbeck GN, Bauman LJ, Essner BS et al (2010) Developmental context: the transition from adolescence to emerging adulthood for youth with disabilities and chronic health conditions. In: Lollar D (ed) Launching into adulthood: an integrated response to suport transition of youth with chronic health conditions and disabilities. Paul H. Brooks Publishing Company, Baltimore

    Google Scholar 

  • Holmes, CS, Yu, Z & Frentz, J (1999) Chronic and discrete stress as predictors of children’s adjustment. Journal of Consulting and Clinical Psychology 67:411–419

    Article  CAS  PubMed  Google Scholar 

  • Hudson MM, Mertens AC, Yasui Y et al (2003) Health status of adult long-term survivors of childhood cancer: a report from the Childhood Cancer Survivor Study. JAMA 290:1583–1592

    Article  CAS  PubMed  Google Scholar 

  • Hutton CJ, Bradley BS (1994) Effects of sudden infant death on bereaved siblings: a comparative study. J Child Psychol Psychiatry 35:723–732

    Article  CAS  PubMed  Google Scholar 

  • Ivanova, MY & Israel, AC (2006) Family stability as a protective factor against psychopathology for urban children receiving psychological services. Journal of Clinical Child & Adolescent Psychology 35:564–570

    Article  Google Scholar 

  • Jalmsell L, Kreicbergs U, Onelov E et al (2006) Symptoms affecting children with malignancies during the last month of life: a nationwide follow-up. Pediatrics 117:1314–1320

    Article  PubMed  Google Scholar 

  • Jalmsell L, Kreicbergs U, Onelov E et al (2010) Anxiety is contagious – symptoms of anxiety in the terminally ill child affect long-term psychological well-being in bereaved parents. Pediatr Blood Cancer 54:751–757

    PubMed  Google Scholar 

  • Katz ER, Madan-Swain A (2006) Maximizing school, academic, and social outcomes in children and adolescents with cancer. In: Brown RT (ed) Comprehensive handbook of childhood cancer and sickle cell disease: a biopsychosocial approach

    Google Scholar 

  • Kazak AE (2001) Comprehensive care for children with cancer and their families: a social ecological framework guiding research, practice, and policy. Child Serv Soc Policy Res Pract 4:217–233

    Article  Google Scholar 

  • Kazak AE (2005) Evidence-based interventions for survivors of childhood cancer and their families. J Pediatr Psychol 30:29–39

    Article  PubMed  Google Scholar 

  • Kazak AE, Simms S, Alderfer MA et al (2005) Feasibility and preliminary outcomes from a pilot study of a brief psychological intervention for families of children newly diagnosed with cancer. J Pediatr Psychol 30:644–655

    Article  PubMed  Google Scholar 

  • Kazak AE, Rourke MT, Alderfer MA et al (2007) Evidence-based assessment, intervention and psychosocial care in pediatric oncology: a blueprint for comprehensive services across treatment. J Pediatr Psychol 32:1099–1110

    Article  PubMed  Google Scholar 

  • Kirkwood NA (2005) A hospital handbook on multiculturalism and religion. Morehouse Publishing, Harrisburg

    Google Scholar 

  • Klassen AF, Klassen R, Dix D et al (2008) Impact of caring for a child with cancer on parents’ health-related quality of life. J Clin Oncol 26:1–6

    Article  Google Scholar 

  • Klosky JL, Howell CR, Li Z et al (2012) Health behavior among adolescents in the childhood cancer study cohort. J Pediatr Psychol 37:634–646

    Article  PubMed Central  PubMed  Google Scholar 

  • Kreicbergs U, Valdimarsdottir U, Onelov E et al (2005) Care-related distress: a nationwide study of parents who lost their child to cancer. J Clin Oncol 23:9162–9171

    Article  PubMed  Google Scholar 

  • Langeveld N, Stam H, Grootenhuis M et al (2002) Quality of life in young adult survivors of childhood cancer. Support Care Cancer 10:579–600

    Article  CAS  PubMed  Google Scholar 

  • Lund LW, Schmiegelow K, Rechnitzer C et al (2010) A systematic review of studies on psychosocial late effects of childhood cancer: structures of society and methodological pitfalls may challenge the conclusions. Pediatr Blood Cancer 56:532–543

    Article  PubMed  Google Scholar 

  • Lytle LA, Kubik MY (2003) Nutritional issues for adolescents. Best Pract Res Clin Endocrinol Metab 17:177–189

    Article  PubMed  Google Scholar 

  • Martinson IM, Campos RG (1991) Adolescent bereavement: long-term responses to a sibling’s death from cancer. J Adolesc Res 6:54–69

    Article  Google Scholar 

  • Masten AS (2001) Ordinary magic. Resilience processes in development. Am Psychol 56:227–238

    Article  CAS  PubMed  Google Scholar 

  • Matlins SM, Magida AJ (2003) How to be a perfect stranger, 3rd edition: the essential religious etiquette handbook. SkyLight Paths Publishing, Woodstock

    Google Scholar 

  • Mccown DE, Davies B (1995) Patterns of grief in young children following the death of a sibling. Death Stud 19:41–53

    Article  Google Scholar 

  • Mosher RB, Mccarthy BJ (1998) Late effects in survivors of bone tumors. J Pediatr Oncol Nurs 15:72–84

    Article  CAS  PubMed  Google Scholar 

  • Nagarajan R, Neglia JP, Clohisy DR et al (2002) Limb salvage and amputation in survivors of pediatric lower-extremity bone tumors: what are the long-term implications? J Clin Oncol 20:4493–4501

    Article  PubMed  Google Scholar 

  • Nagarajan R, Neglia JP, Clohisy DR et al (2003) Education, employment, insurance, and marital status among 694 survivors of pediatric lower extremity bone tumors. Cancer 97:2554–2564

    Article  PubMed  Google Scholar 

  • Nagarajan R, Clohisy DR, Neglia JP et al (2004) Function and quality-of-life of survivors of pelvic and lower extremity osteosarcoma and Ewing’s sarcoma: the Childhood Cancer Survivor Study. Br J Cancer 91:1858–1865

    Article  CAS  PubMed Central  PubMed  Google Scholar 

  • Nagarajan R, Mogil R, Neglia JP et al (2009) Self-reported global function among adult survivors of childhood lower-extremity bone tumors: a report from the Childhood Cancer Survivor Study (CCSS). J Cancer Surviv 3:59–65

    Article  PubMed Central  PubMed  Google Scholar 

  • Nagarajan R, Kamruzzaman A, Ness KK et al (2011) Twenty years of follow-up of survivors of childhood osteosarcoma. Cancer 117:625–634

    Article  PubMed Central  PubMed  Google Scholar 

  • Nicholson HS, Mulvihill JJ, Byrne J (1992) Late effects of therapy in adult survivors of osteosarcoma and Ewing’s sarcoma. Med Pediatr Oncol 20:6–12

    Article  CAS  PubMed  Google Scholar 

  • Noll RB, Kazak AE (2004) Psychosocial care. In: Altman A (ed) Supportive care of children with cancer: current therapy and guidelines from the Children’s Oncology Group. Johns Hopkins University Press, Baltimore

    Google Scholar 

  • Noll RB, Gartstein MA, Vannatta K et al (1999) Social, emotional, and behavioral functioning of children with cancer. Pediatrics 103:71–78

    Article  CAS  PubMed  Google Scholar 

  • Pai ALH, Drotar D, Zebracki K et al (2006) A meta-analysis of the effects of psychological interventions in pediatric oncology on outcomes of psychological distress and adjustment. J Pediatr Psychol 31:978–988

    Article  PubMed  Google Scholar 

  • Pai ALH, Lewandowski A, Youngstrom E et al (2007) A meta-analytic review of the influence of pediatric cancer on parent and family functioning. J Fam Psychol 21:407–415

    Article  PubMed  Google Scholar 

  • Phipps S, Steele RG, Hall K et al (2001) Repressive adaptation in children with cancer: a replication and extension. Health Psychol 20:445–451

    Article  CAS  PubMed  Google Scholar 

  • Phipps S, Long AM, Ogden J (2007) Benefit finding scale for children: preliminary findings from a childhood cancer population. J Pediatr Psychol 32:1264–1271

    Article  PubMed  Google Scholar 

  • Postma A, Kingma A, De Ruiter JH et al (1992) Quality of life in bone tumor patients comparing limb salvage and amputation of the lower extremity. J Surg Oncol 51:47–51

    Article  CAS  PubMed  Google Scholar 

  • Robinson KE, Gerhardt CA, Vannatta K et al (2007) Parent and family factors associated with child adjustment to pediatric cancer. J Pediatr Psychol 32:400–410

    Article  PubMed  Google Scholar 

  • Robison LL, Armstrong GT, Boice JD et al (2009)The Childhood Cancer Survivor Study: A National Cancer Institute–Supported Resource for Outcome and Intervention Research. J Clin Oncol 27:2308–2318

    Article  PubMed Central  PubMed  Google Scholar 

  • Rodriguez EM, Dunn MJ, Zuckerman T et al (2012) Cancer-related sources of stress for children with cancer and their parents. J Pediatr Psychol 37:185–197

    Article  PubMed Central  PubMed  Google Scholar 

  • Rosenberg AR, Baker KS, Syrjala K et al (2012) Systematic review of psychosocial morbidities among bereaved parents of children with cancer. Pediatr Blood Cancer 58:503–512

    Article  PubMed Central  PubMed  Google Scholar 

  • Rosenberg AR, Dussel V, Kang T et al (2013) Psychological distress in parents of children with advanced cancer. JAMA Pediatr 167:537–543

    Article  PubMed Central  PubMed  Google Scholar 

  • Sawyer M, Antoniou G, Toogood I et al (2000) Childhood cancer: a 4-year prospective study of the psychological adjustment of children and parents. J Pediatr Hematol Oncol 22:214–220

    Article  CAS  PubMed  Google Scholar 

  • Sharpe D, Rossiter L (2002) Siblings of children with a chronic illness: a meta-analysis. J Pediatr Psychol 27:699–710

    Article  PubMed  Google Scholar 

  • Shaw RJ (2001) Treatment adherence in adolescents: development and psychopathology. Clin Child Psychol Psychiatry 6:137–150

    Article  Google Scholar 

  • Stam H, Hartman EE, Deurloo JA et al (2006) Young adult patients with a history of pediatric disease: impact on course of life and transition into adulthood. J Adolesc Health 39:4–13

    Article  PubMed  Google Scholar 

  • Teall T, Barrera M, Barr R et al (2013) Psychological resilience in adolescent and young adult survivors of lower extremity bone tumors. Pediatr Blood Cancer 60:1223–1230

    Article  PubMed  Google Scholar 

  • Tercyak KP, Donze JR, Prahlad S et al (2006) Multiple behavioral risk factors among adolescent survivors of childhood cancer in the survivor health and resilience education (SHARE) program. Pediatr Blood Cancer 47:825–830

    Article  PubMed  Google Scholar 

  • Theunissen JM, Hoogerbrugge PM, Van Achterberg T et al (2007) Symptoms in the palliative phase of children with cancer. Pediatr Blood Cancer 49:160–165

    Article  CAS  PubMed  Google Scholar 

  • Thompson AL, Gerhardt CA, Miller KS et al (2009) Survivors of childhood cancer and comparison peers: the influence of early peer factors on externalizing behavior in emerging adulthood. J Pediatr Psychol 34:1119–1128

    Article  PubMed  Google Scholar 

  • Tillmann V, Darlington AS, Eiser C et al (2002) Male sex and low physical activity are associated with reduced spine bone mineral density in survivors of childhood acute lymphoblastic leukemia. J Bone Miner Res 17:1073–1080

    Article  CAS  PubMed  Google Scholar 

  • Vannatta K, Gerhardt CA (2003) Pediatric oncology: psychosocial outcomes for children and families. In: Roberts MC (ed) Handbook of pediatric psychology, 4th edn. Guilford Press, New York

    Google Scholar 

  • Wallander J, Varni JW (1992) Adjustment in children with chronic physical disorders: programmatic research on a disability-stress-coping model. In: Lagreca A, Siegel L, Wallander J, Walker C (eds) Stress and coping in child health. Guilford Press, New York

    Google Scholar 

  • Warner JT, Bell W, Webb DK et al (1998) Daily energy expenditure and physical activity in survivors of childhood malignancy. Pediatr Res 43:607–613

    Article  CAS  PubMed  Google Scholar 

  • Whaley, SE, Pinto, A & Sigman, M (1999) Characterizing interactions between anxious mothers and their children. Journal of Consulting and Clinical Psychology 67:826–836

    Article  CAS  PubMed  Google Scholar 

  • Wiener L, Zadeh S, Battles H et al (2012) Allowing adolescents and young adults to plan their end-of-life care. Pediatrics 130:897–905

    Article  PubMed Central  PubMed  Google Scholar 

  • Wilkins KL, Woodgate RL (2005) A review of qualitative research on the childhood cancer experience from the perspective of siblings: the need to give them a voice. J Pediatr Oncol Nurs 22:305–319

    Article  PubMed  Google Scholar 

  • Wolfe J, Grier HE, Klar N et al (2000) Symptoms and suffering at the end of life in children with cancer. N Engl J Med 342:326–333

    Article  CAS  PubMed  Google Scholar 

  • Varni, JW, Katz, ER, Colegrove, R et al. (1996) Family functioning predictors of adjustment in children with newly diagnosed cancer: A prospective analysis. Journal of Child Psychology & Psychiatry & Allied Disciplines 37:321–328

    Article  CAS  Google Scholar 

  • Yeazel MW, Oeffinger KC, Gurney JG et al (2004) The cancer screening practices of adult survivors of childhood cancer. Cancer 100:631–640

    Article  PubMed  Google Scholar 

  • Zeltzer LK, Lu Q, Leisenring W et al (2008) Psychosocial outcomes and health-related quality of life in adult childhood cancer survivors: a report from the childhood cancer survivor study. Cancer Epidemiol Biomarkers Prev 17:435–446

    Article  PubMed  Google Scholar 

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Correspondence to Cynthia A. Gerhardt PhD .

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Gerhardt, C.A., Steele, A.C., Thompson, A.L., Young-Saleme, T.K. (2015). Psychosocial Effects of Pediatric Bone Tumors and Recommendations for Supportive Care. In: Cripe, T., Yeager, N. (eds) Malignant Pediatric Bone Tumors - Treatment & Management. Pediatric Oncology. Springer, Cham. https://doi.org/10.1007/978-3-319-18099-1_12

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