Randomized Trial of a Supportive Psychotherapy for Parents of Adolescents and Young Adults With Hematologic Malignancies

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Michael Koehler Department of Hematology and Oncology, University Hospital Magdeburg
Gesundheitscampus Immunologie, Infektiologie und Inflammation (GCI3), Medical Center

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Susanne Hoppe Department of Hematology and Oncology, University Hospital Magdeburg
Gesundheitscampus Immunologie, Infektiologie und Inflammation (GCI3), Medical Center

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Siegfried Kropf Institute for Biometry and Medical Informatics, Medical Faculty, Otto-von-Guericke University, Magdeburg, Germany

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Anke Lux Institute for Biometry and Medical Informatics, Medical Faculty, Otto-von-Guericke University, Magdeburg, Germany

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Rainer Bartsch Department of Hematology and Oncology, University Hospital Magdeburg
Gesundheitscampus Immunologie, Infektiologie und Inflammation (GCI3), Medical Center

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Bernhard Holzner Department of Psychiatry, Psychotherapy and Psychosomatic, Innsbruck Medical University, Innsbruck, Austria

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Juergen Krauter Department of Hematology and Oncology, Braunschweig Municipal Hospital, Braunschweig, Germany

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Axel Florschütz Department of Internal Medicine, Dessau Municipal Hospital, Dessau-Roßlau, Germany

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Kathleen Jentsch-Ullrich Specialty Practice for Hematology and Oncology, Magdeburg, Germany

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Joerg Frommer Department of Psychosomatic Medicine and Psychotherapy, University Hospital Magdeburg

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Hans-Henning Flechtner Department of Child and Adolescent Psychiatry, Medical Faculty, Otto-von-Guericke University, Magdeburg, Germany

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Thomas Fischer Department of Hematology and Oncology, University Hospital Magdeburg
Gesundheitscampus Immunologie, Infektiologie und Inflammation (GCI3), Medical Center

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Background: Cancer regularly disrupts health and developmental trajectories in adolescents and young adults (AYAs). Parents have been shown to have a substantial impact on the health and cancer survivorship activities of AYA patients in the form of symptom management. However, no randomized controlled trial has evaluated a coping support intervention (CSI) program for parents of AYAs with cancer aged 18 to 40 years. Patients and Methods: From November 30, 2012, to August 29, 2016, parents of AYAs with hematologic malignancies were randomized in a phase III controlled trial (1:1 ratio, stratified sampling) to either the research-based CSI AYA-Parents group (CSI group; n=82) or the standard care (SC) group (n=70). CSI consisted of 5 sessions to achieve the enhancement of parental adaptive coping as the primary outcome (per the adaptive coping scale of the 28-item Brief COPE, a validated multidimensional self-assessment-questionnaire recommended for clinical cancer research). Measures of adaptive coping, depression, and mental health were collected at pre-CSI (measurement date T1), at the end of the intervention sessions (measurement date T2), and at follow-up (3 months). We calculated mean change scores in outcomes and estimated intervention effect sizes (Cohen’s d) for changes from T1 to T2/T3, with 0.2 indicating a small effect, 0.5 a medium effect, and 0.8 a large effect. All statistical tests were 2-sided. Results: In the intention-to-treat analysis, the CSI group significantly improved their adaptive coping compared with the SC group (95% CI, 0.30–2.54; P=.013; d=0.405), whereas adaptive coping in the SC group deteriorated. The CSI group also experienced a significant decrease in depressive symptoms and improved mental health with clinical significance (95% CI, –1.98 to –0.30; P=.008; d=0.433, and 95% CI, –0.19 to 3.97; P=.074; d=0.292, respectively). Sensitivity analyses confirmed the robustness of the main intention-to-treat analysis. Conclusions: CSI improved effectively adaptive coping and depression in parents of AYAs with hematologic malignancies. It may represent a novel family-based approach in AYA oncology care.

Submitted November 8, 2020; final revision received May 21, 2021; accepted for publication June 17, 2021. Published online April 11, 2022.

Previous presentation: This work was previously presented as an oral abstract at the 33rd German Cancer Congress; February 21–24, 2018; Berlin, Germany. Abstract 550.

Author contributions: Study concept and design: Koehler, Kropf, Frommer, Flechtner, Fischer. Data curation: Koehler, Hoppe, Kropf, Lux, Bartsch, Holzner, Krauter, Florschütz, Jentsch-Ullrich. Formal data analysis and interpretation: Koehler, Hoppe, Kropf, Lux. Data interpretation: Koehler, Hoppe, Kropf, Lux, Frommer, Flechtner, Fischer. Manuscript writing—original draft: Koehler, Hoppe, Fischer. Manuscript writing—review and editing: All authors.

Disclosures: Dr. Holzner has disclosed holding intellectual property rights on the CHES software tool used for data collection. The remaining authors have disclosed that they have not received any financial consideration from any person or organization to support the preparation, analysis, results, or discussion of this article.

Funding: This work was funded by German Cancer Aid (grant number 109965).

Disclaimer: The funder had no role in the design, data collection, data analysis, data interpretation, or writing of the report. The corresponding author had full access to all the data in the study and had final responsibility for the decision to submit for publication.

Correspondence: Michael Koehler, PhD, Department of Hematology and Oncology, University Hospital Magdeburg, Leipziger Straße 44, 39120 Magdeburg, Germany. Email: michael.koehler@med.ovgu.de

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  • 1.

    Bleyer A, Barr R. Highlights and challenges. In: Bleyer A, O’Leary M, Barr R, Ries LAG, eds. Cancer Epidemiology in Older Adolescents and Young Adults 15 to 29 Years of Age, Including SEER Incidence and Survival: 1975-2000. National Cancer Institute, NIH Pub. No. 06-5767. Bethesda, MD: National Cancer Institute; 2006:173190.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 2.

    Shapiro CL. Cancer survivorship. N Engl J Med 2018;379:24382450.

  • 3.

    Warner EL, Kent EE, Trevino KM, et al. Social well-being among adolescents and young adults with cancer: a systematic review. Cancer 2016;122:10291037.

  • 4.

    Treadgold CL, Kuperberg A. Been there, done that, wrote the blog: the choices and challenges of supporting adolescents and young adults with cancer. J Clin Oncol 2010;28:48424849.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 5.

    Zebrack BJ. Psychological, social, and behavioral issues for young adults with cancer. Cancer 2011;117(10 Suppl):22892294.

  • 6.

    Mikrut EE, Panjwani AA, Cipollina R, Revenson TA. Emotional adjustment among parents of adolescents and young adults with cancer: the influence of social constraints on cognitive processing and fear of recurrence. J Behav Med 2020;43:237245.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 7.

    Grinyer A. Contrasting parental perspectives with those of teenagers and young adults with cancer: comparing the findings from two qualitative studies. Eur J Oncol Nurs 2009;13:200206.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 8.

    Hamilton AS, Zhuang X, Modjeski D, et al. Population-based survey methods for reaching adolescent and young adult survivors of pediatric cancer and their parents. J Adolesc Young Adult Oncol 2019;8:4048.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 9.

    Richter D, Koehler M, Friedrich M, et al. Psychosocial interventions for adolescents and young adult cancer patients: a systematic review and meta-analysis. Crit Rev Oncol Hematol 2015;95:370386.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 10.

    Denlinger CS, Sanft T, Armenian S, et al. NCCN Clinical Practice Guidelines in Oncology: Survivorship. Version 2.2020. Accessed November 2, 2020. To view the most recent version, visit NCCN.org

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 11.

    Bhatia S, Pappo AS, Acquazzino M, et al. NCCN Clinical Practice Guidelines in Oncology: Adolescent and Young Adult Oncology. Version 1.2021. Accessed November 2, 2020. To view the most recent version, visit NCCN.org

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 12.

    Tang ST, Chen JS, Wen FH, et al. Advance care planning improves psychological symptoms but not quality of life and preferred end-of-life care of patients with cancer. J Natl Compr Canc Netw 2019;17:311320.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 13.

    Zebrack B, Isaacson S. Psychosocial care of adolescent and young adult patients with cancer and survivors. J Clin Oncol 2012;30:12211226.

  • 14.

    Pollock BH. What’s missing in the assessment of adolescent and young adult (AYA) cancer outcomes? J Natl Cancer Inst 2020;112:975976.

  • 15.

    Butow P, Palmer S, Pai A, et al. Review of adherence-related issues in adolescents and young adults with cancer. J Clin Oncol 2010;28:48004809.

  • 16.

    McCarthy MC, McNeil R, Drew S, et al. Psychological distress and posttraumatic stress symptoms in adolescents and young adults with cancer and their parents. J Adolesc Young Adult Oncol 2016;5:322329.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 17.

    Gilbar O. Parent caregiver adjustment to cancer of an adult child. J Psychosom Res 2002;52:295302.

  • 18.

    Spillers RL, Wellisch DK, Kim Y, et al. Family caregivers and guilt in the context of cancer care. Psychosomatics 2008;49:511519.

  • 19.

    Evan EE, Zeltzer LK. Psychosocial dimensions of cancer in adolescents and young adults. Cancer 2006;107(Suppl 7):16631671.

  • 20.

    Juth V, Silver RC, Sender L. The shared experience of adolescent and young adult cancer patients and their caregivers. Psychooncology 2015;24:17461753.

  • 21.

    Northouse LL, Katapodi MC, Song L, et al. Interventions with family caregivers of cancer patients: meta-analysis of randomized trials. CA Cancer J Clin 2010;60:317339.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 22.

    Druker BJ, Guilhot F, O’Brien SG, et al. Five-year follow-up of patients receiving imatinib for chronic myeloid leukemia. N Engl J Med 2006;355:24082417.

  • 23.

    Koehler M, Fischer T. How health-related quality-of-life outcomes in patients with acute promyelocytic leukemia can help physicians in decision making. J Clin Oncol 2015;33:10901091.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 24.

    Fischer T, Stone RM, Deangelo DJ, et al. Phase IIB trial of oral midostaurin (PKC412), the FMS-like tyrosine kinase 3 receptor (FLT3) and multi-targeted kinase inhibitor, in patients with acute myeloid leukemia and high-risk myelodysplastic syndrome with either wild-type or mutated FLT3. J Clin Oncol 2010;28:43394345.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 25.

    Coiffier B, Lepage E, Brière J, et al. CHOP chemotherapy plus rituximab compared with CHOP alone in elderly patients with diffuse large-B-cell lymphoma. N Engl J Med 2002;346:235242.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 26.

    Radford J, Illidge T, Counsell N, et al. Results of a trial of PET-directed therapy for early-stage Hodgkin’s lymphoma. N Engl J Med 2015;372:15981607.

  • 27.

    Connors JM, Cozen W, Steidl C, et al. Hodgkin lymphoma. Nat Rev Dis Primers 2020;6:61.

  • 28.

    Koehler M, Koenigsmann M, Frommer J. Coping with illness and subjective theories of illness in adult patients with haematological malignancies: systematic review. Crit Rev Oncol Hematol 2009;69:237257.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 29.

    Bevan JL, Pecchioni LL. Understanding the impact of family caregiver cancer literacy on patient health outcomes. Patient Educ Couns 2008;71:356364.

  • 30.

    Gutiérrez-Colina AM, Lee JL, VanDellen M, et al. Family functioning and depressive symptoms in adolescent and young adult cancer survivors and their families: a dyadic analytic approach. J Pediatr Psychol 2017;42:1927.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 31.

    Clinton-McHarg T, Paul C, Sanson-Fisher R, et al. Determining research priorities for young people with haematological cancer: a value-weighting approach. Eur J Cancer 2010;46:32633270.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 32.

    Doupnik SK, Hill D, Palakshappa D, et al. Parent coping support interventions during acute pediatric hospitalizations: a meta-analysis. Pediatrics 2017;140:e20164171.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 33.

    Eccleston C, Fisher E, Law E, et al. Psychological interventions for parents of children and adolescents with chronic illness. Cochrane Database Syst Rev 2015;4:CD009660.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 34.

    Law EF, Fisher E, Fales J, et al. Systematic review and meta-analysis of parent and family-based interventions for children and adolescents with chronic medical conditions. J Pediatr Psychol 2014;39:866886.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 35.

    Oken MM, Creech RH, Tormey DC, et al. Toxicity and response criteria of the Eastern Cooperative Oncology Group. Am J Clin Oncol 1982;5:649655.

  • 36.

    Hendricks-Ferguson VL, Cherven BO, Burns DS, et al. Recruitment strategies and rates of a multi-site behavioral intervention for adolescents and young adults with cancer. J Pediatr Health Care 2013;27:434442.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 37.

    Burke ME, Albritton K, Marina N. Challenges in the recruitment of adolescents and young adults to cancer clinical trials. Cancer 2007;110:23852393.

  • 38.

    Blay JY, Coindre JM, Ducimetière F, Ray-Coquard I. The value of research collaborations and consortia in rare cancers. Lancet Oncol 2016;17:e6269.

  • 39.

    Billingham L, Malottki K, Steven N. Research methods to change clinical practice for patients with rare cancers. Lancet Oncol 2016;17:e7080.

  • 40.

    Ford I, Norrie J. Pragmatic trials. N Engl J Med 2016;375:454463.

  • 41.

    Frieden TR. Evidence for health decision making—beyond randomized, controlled trials. N Engl J Med 2017;377:465475.

  • 42.

    Scott NW, McPherson GC, Ramsay CR, Campbell MK. The method of minimization for allocation to clinical trials. A review. Control Clin Trials 2002;23:662674.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 43.

    Taves DR. The use of minimization in clinical trials. Contemp Clin Trials 2010;31:180184.

  • 44.

    Zwahlen D, Hagenbuch N, Carley MI, et al. Screening cancer patients’ families with the Distress Thermometer (DT): a validation study. Psychooncology 2008;17:959966.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 45.

    Holzner B, Giesinger JM, Pinggera J, et al. The Computer-Based Health Evaluation Software (CHES): a software for electronic patient-reported outcome monitoring. BMC Med Inform Decis Mak 2012;12:126.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 46.

    Koehler M, Hornemann B, Holzner B, et al. Future now – implementation of IT-supported distress screening. Oncologist 2017;23:453461. https://doi.org/10.1007/s00761-017-0209-7

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 47.

    Prefit AB, Cândea DM, Szentagotai-Tătar A. Emotion regulation across eating pathology: a meta-analysis. Appetite 2019;143:104438.

  • 48.

    Grégoire S, Lamore K, Laurence V, et al. Coping strategies and factors related to problematic substance use and behavioral addictions among adolescents and young adults with cancer. J Adolesc Young Adult Oncol 2020;9:639650.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 49.

    Rockland LH. Supportive Therapy: A Psychodynamic Approach. New York, NY: Basic Books; 1989.

  • 50.

    Carver CS. You want to measure coping but your protocol’s too long: consider the brief COPE. Int J Behav Med 1997;4:92100.

  • 51.

    Kroenke K, Spitzer RL, Williams JB. The PHQ-9: validity of a brief depression severity measure. J Gen Intern Med 2001;16:606613.

  • 52.

    American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders, 4th ed, text revision (DSM-IV-TR). Washington, DC: American Psychiatric Association; 2000.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 53.

    Bullinger M, Alonso J, Apolone G, et al. Translating health status questionnaires and evaluating their quality: the IQOLA Project approach. International Quality of Life Assessment. J Clin Epidemiol 1998;51:913923.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 54.

    Pidala J, Anasetti C, Jim H. Health-related quality of life following haematopoietic cell transplantation: patient education, evaluation and intervention. Br J Haematol 2010;148:373385.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 55.

    White IR, Carpenter J, Horton NJ. Including all individuals is not enough: lessons for intention-to-treat analysis. Clin Trials 2012;9:396407.

  • 56.

    Klauer KJ, Phye GD. Inductive reasoning: a training approach. Rev Educ Res 2008;78:85123.

  • 57.

    Ellis PD. The Essential Guide to Effect Sizes: An Introduction to Statistical Power, Meta-Analysis and the Interpretation of Research Results. Cambridge, UK: Cambridge University Press; 2010.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 58.

    Laupacis A, Sackett DL, Roberts RS. An assessment of clinically useful measures of the consequences of treatment. N Engl J Med 1988;318:17281733.

  • 59.

    Manne S, Miller D. Social support, social conflict, and adjustment among adolescents with cancer. J Pediatr Psychol 1998;23:121130.

  • 60.

    Allen R, Newman SP, Souhami RL. Anxiety and depression in adolescent cancer: findings in patients and parents at the time of diagnosis. Eur J Cancer 1997;33:12501255.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 61.

    Deyell RJ, Lorenzi M, Ma S, et al. Antidepressant use among survivors of childhood, adolescent and young adult cancer: a report of the Childhood, Adolescent and Young Adult Cancer Survivor (CAYACS) research program. Pediatr Blood Cancer 2013;60:816822.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 62.

    Watabayashi K, Steelquist J, Overstreet KA, et al. A pilot study of a comprehensive financial navigation program in patients with cancer and caregivers. J Natl Compr Canc Netw 2020;18:13661373.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 63.

    Hulbert-Williams N, Neal R, Morrison V, et al. Anxiety, depression and quality of life after cancer diagnosis: what psychosocial variables best predict how patients adjust? Psychooncology 2012;21:857867.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 64.

    Nipp RD, Greer JA, El-Jawahri A, et al. Coping and prognostic awareness in patients with advanced cancer. J Clin Oncol 2017;35:25512557.

  • 65.

    Northouse LL, Mood DW, Schafenacker A, et al. Randomized clinical trial of a brief and extensive dyadic intervention for advanced cancer patients and their family caregivers. Psychooncology 2013;22:555563.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 66.

    Nipp RD, El-Jawahri A, Fishbein JN, et al. Factors associated with depression and anxiety symptoms in family caregivers of patients with incurable cancer. Ann Oncol 2016;27:16071612.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 67.

    Litzelman K, Kent EE, Mollica M, Rowland JH How does caregiver well-being relate to perceived quality of care in patients with cancer? Exploring associations and pathways. J Clin Oncol 2016;34:35543561.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 68.

    Mack JW, Currie ER, Martello V, et al. Barriers to optimal end-of-life care for adolescents and young adults with cancer: bereaved caregiver perspectives. J Natl Compr Canc Netw 2021;19:528533.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 69.

    Mahmoud AN, Gad MM, Elgendy AY, et al. Efficacy and safety of aspirin for primary prevention of cardiovascular events: a meta-analysis and trial sequential analysis of randomized controlled trials. Eur Heart J 2019;40:607617.

    • PubMed
    • Search Google Scholar
    • Export Citation

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