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. 2016 Nov 29;11(11):CD008970.
doi: 10.1002/14651858.CD008970.pub3.

Interventions for promoting participation in shared decision-making for children with cancer

Imelda Coyne  1 , Dónal P O'Mathúna, Faith Gibson, Linda Shields, Edith Leclercq, Greg Sheaf
Affiliations

Interventions for promoting participation in shared decision-making for children with cancer

Imelda Coyne et al. Cochrane Database Syst Rev. .

Abstract

Background: This is an update of the Cochrane systematic review of shared decision-making (SMD) making published in 2013. Children's rights to have their views heard in matters that affect their lives are now well established since the publication of the UN Convention treaty (1989). Children with cancer generally prefer to be involved in decision-making and consider it important that they have the opportunity to take part in decision-making concerning their health care, even in end-of-life decisions. There is considerable support for involving children in healthcare decision-making at a level commensurate with their experience, age and abilities. Thus, healthcare professionals and parents need to know how they should involve children in decision-making and what interventions are most effective in promoting SDM for children with cancer.

Objectives: To examine the effects of SDM interventions on the process of SDM for children with cancer who are aged four to 18 years.

Search methods: We searched the following sources for the review: Cochrane Central Register of Controlled Studies (CENTRAL) (the Cochrane Library 2016, Issue 1); PubMed (NLM) (1946 to February 2016); Embase (Ovid) (1974 to February 2016); CINAHL (EBSCO) (1982 to February 2016); ERIC (ProQuest) (1966 to February 2016); PsycINFO (EBSCO) (1806 to February 2016); BIOSIS (Thomson Reuters) (1980 to December 2009 - subscription ceased at that date); ProQuest Dissertations and Theses (1637 to February 2016); and Sociological Abstracts (ProQuest) (1952 to February 2016). In addition we searched the reference lists of relevant articles and review articles and the following conference proceedings (2005 up to and including 2015): American Academy on Communication in Healthcare (AACH), European Society for Medical Oncology (ESMO), European CanCer Organisation (ECCO), European Association for Communication in Healthcare (EACH), International Conference on Communication in Healthcare (ICCH), International Shared Decision Making Conference (ISDM), Annual Conference of the International Society for Paediatric Oncology (SIOP) and Annual Scientific Meeting of the Society for Medical Decision Making (SMDM). We scanned the ISRCTN (International Standard Randomised Controlled Trial Number) register and the National Institutes of Health (NIH) Register for ongoing trials on 29 February 2016.

Selection criteria: For this update, we included randomised controlled trials (RCTs) and controlled clinical trials (CCTs) of SDM interventions for children with cancer aged four to 18 years. The types of decisions included were: treatment, health care and research participation decisions. The primary outcome was SDM as measured with any validated scale.

Data collection and analysis: Two review authors undertook the searches, and three review authors independently assessed the studies obtained. We contacted study authors for additional information.

Main results: No studies met the inclusion criteria, and hence no analysis could be undertaken.

Authors' conclusions: No conclusions can be made on the effects of interventions to promote SDM for children with cancer aged four to 18 years. This review has highlighted the dearth of high-quality quantitative research on interventions to promote participation in SDM for children with cancer. There are many potential reasons for the lack of SDM intervention studies with children. Attitudes towards children's participation are slowly changing in society and such changes may take time to be translated or adopted in healthcare settings. The priority may be on developing interventions that promote children's participation in communication interactions since information-sharing is a prerequisite for SDM. Restricting this review to RCTs was a limitation and extending the review to non-randomised studies (NRS) may have produced more evidence. For this update, we included only RCTs and CCTs. Clearly more research is needed.

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Conflict of interest statement

None.

Figures

1
1
Study flow diagram.
See this image and copyright information in PMC

Update of

References

References to studies excluded from this review

Beale 2007 {published data only}
    1. Beale IL, Kato PM, Marin‐Bowling VM, Guthrie N, Cole SW. Improvement in cancer‐related knowledge following use of a psychoeducational video game for adolescents and young adults with cancer. Journal of Adolescent Health 2007;41(3):263‐70. - PubMed
Dragone 2002 {published data only}
    1. Dragone MA, Bush PJ, Jones JK, Bearison DJ, Kamani S. Development and evaluation of an interactive CD‐ROM for children with leukaemia and their families. Patient Education and Counselling 2002;46(4):297‐307. - PMC - PubMed
Hollen 2013 {published data only}
    1. Hollen PJ, Tyc VL, Donnangelo SF, Shannon SV, O'Laughlen MC, Hinton I, et al. A substance use decision aid for medically at‐risk adolescents: results of a randomized controlled trial for cancer‐surviving adolescents. Cancer Nursing 2013;36(5):355‐67. - PMC - PubMed
Jones 2010 {published data only}
    1. Jones JK, Kamani SA, Bush PJ, Hennessy KA, Marfatia A, Shad AT. Development and evaluation of an educational interactive CD‐ROM for teens with cancer. Pediatric Blood & Cancer 2010;55(3):512‐9. - PMC - PubMed
Kato 2008 {published data only}
    1. Kato PM, Cole SW, Bradlyn, AS, Pollack BH. A video game improves behavioral outcomes in adolescents and young adults with cancer: a randomized trial. Pediatrics 2008;122(2):e305‐17. - PubMed
Kurt 2011 {published data only}
    1. Kurt AS, Savaser S. Short‐term effects of remission video game in adolescents with cancer. Psycho‐Oncology 2011;20 (Suppl 2):30‐104.

Additional references

Achenbach 1991
    1. Achenbach T. Manual for the Child Behavior Checklist 4‐18 and 1991 Profile. Burlington: University of Vermont Department of Psychiatry, 1991.
Alderson 2006
    1. Alderson P, Sutcliffe K, Curtis K. Children as partners in their medical care. Archives of Disease in Childhood 2006;91:300‐3. - PMC - PubMed
Andre 2004
    1. Andre N. Involving children in paediatric oncology decision‐making. Lancet Oncology 2004;5:467. - PubMed
Bandura 1977
    1. Bandura A. Self‐efficacy: toward a unifying theory of behavioral change. Psychological Review 1977;84:191‐215. - PubMed
Beck 1996
    1. Beck AT, Steer RA, Brown GK. Manual for Beck Depression Inventory. 2nd Edition. San Antonio: Psychological Corporation, 1996.
Boylan 2004
    1. Boylan P. Children and young people's views on health and health services: a review of the evidence. Children's Voices Project: Feedback from Children and Young People About their Experience and Expectations of Healthcare. London: Commission for Health Improvement, 2004.
Cavet 2005
    1. Cavet J, Sloper P. Children and Young People's Views on Health and Health Services: a Review of the Evidence. London: National Children's Bureau, 2005.
Charles 1997
    1. Charles C, Gafni A, Whelan T. Shared decision‐making in the medical encounter: what does it mean? (or it takes at least two to tango). Social Science and Medicine 1997;44(5):681‐92. - PubMed
Charles 1999
    1. Charles C, Gafni A, Whelan T. Decision‐making in the physician‐patient encounter: revisiting the shared treatment decision‐making model. Social Science and Medicine 1999;49:651‐61. - PubMed
Coyne 2006
    1. Coyne IT, Hayes E, Gallagher P, Regan G. Giving children a voice: investigation of children's experiences of participation in consultation and decision‐making in Irish hospitals. Giving Children a Voice: Investigation of Children's Experiences of Participation in Consultation and Decision‐Making in Irish Hospitals. Dublin: Office of the Minister for Children, 2006.
Coyne 2010
    1. Coyne I, Amory A, Kiernan G, Gibson F, Breatnach F. Children with Cancer: Children, Parents and Health Professionals' Perspectives on Children's Participation in Shared Decision‐Making. Trinity College Dublin, Dublin. Dublin: Trinity College Dublin, 2010:1‐149.
Coyne 2011a
    1. Coyne I, Gallagher P. Participation in communication and decision‐making: children and young people's experiences in a hospital setting. Journal of Clinical Nursing 2011;20(15‐16):2334‐43. - PubMed
Coyne 2011b
    1. Coyne I, Harder M. Children’s participation in decision‐making: balancing protection with shared decision‐making using a situational perspective. Journal of Child Health Care 2011;15(4):312‐9. - PubMed
Coyne 2014
    1. Coyne I, Amory A, Kiernan G, Gibson F. Children's participation in shared decision‐making: children, adolescents, parents and healthcare professionals' perspectives and experiences. European Journal of Oncology Nursing 2014;18(3):273‐80. - PubMed
Coyne 2016
    1. Coyne I, Amory A, Gibson F, Kiernan G. Information‐sharing between healthcare professionals, parents and children with cancer: more than a matter of information exchange. European Journal of Cancer Care 2016;25(1):141‐56. - PubMed
De Winter 2002
    1. Winter M, Baerveldt C, Kooistra J. Enabling children: participation as a new perspective on child‐health promotion. Child Care Health and Development 2002;28:109‐16. - PubMed
Degner 1992
    1. Degner LF, Sloan JA. Decision making during serious illness: what role do patients really want to play. Journal of Clinical Epidemiology 1992;45(9):941‐50. - PubMed
Dy 2007
    1. Dy SM. Instruments for evaluating shared medical decision making. Medical Care Research and Review 2007;64(6):623‐49. - PubMed
Edwards 2003
    1. Edwards A, Elwyn G, Hood K, Robling M, Atwell C, Holmes‐Rovner M. The development of COMRADE ‐ a patient‐based outcome measure to evaluate the effectiveness of risk communication and treatment decision making in consultations. Patient Education and Counseling 2003;50:311‐22. - PubMed
Elwyn 2003
    1. Elwyn G, Edwards A, Wensing M, Atwell C, Grol R. Shared decision making: developing the OPTION scale for measuring patient involvement. Quality and Safety in Health Care 2003;12:93‐9. - PMC - PubMed
Elwyn 2005
    1. Elwyn G, Hutchings H, Edwards A, Rapport F, Wensing M, Cheung WY, et al. The OPTION scale: measuring the extent that clinicians involvement patients in decision‐making tasks. Health Expectations 2005;8:34‐42. - PMC - PubMed
Elwyn 2006
    1. Elwyn G, O'Connor A, Stacey D, Volk R, Edwards A, Coulter A, et al. Developing a quality criteria framework for patient decision aids: online international Delphi consensus process. BMJ 2006;333(7565):417. - PMC - PubMed
Ende 1989
    1. Ende J, Kazis L, Ash A, Moskowitz MA. Measuring patients' desire for autonomy; decision making and information‐seeking preferences among medical patients. Journal of General Internal Medicine 1989;4(1):23‐30. - PubMed
Higgins 2011
    1. Higgins JPT, Green S (editors). Cochrane Handbook for Systematic Reviews of Interventions Version 5.1.0 (updated March 2011). The Cochrane Collaboration, 2011. Available from www.cochrane‐handbook.org.
Hinds 2001
    1. Hinds P, Oakes L, Furman W, Quargnenti A, Olson MS, Foppiano P, et al. End‐of‐life decision making by adolescents, parents, and healthcare providers in pediatric oncology. Cancer Nursing 2001;24(2):122‐36. - PubMed
Hinds 2005
    1. Hinds P, Drew D, Oakes LL, Fouladi M, Spunt SL, Church C, et al. End‐of‐life care preferences of pediatric patients with cancer. Journal of Clinical Oncology 2005;23(36):9146‐54. - PubMed
Hokkanen 2004
    1. Hokkanen H, Eriksson E, Ahonen O, Salantera S. Adolescents with cancer: experience of life and how it could be made easier. Cancer Nursing 2004;27:325‐35. - PubMed
Hollen 1999
    1. Hollen PJ, Hobbie WL, Finley SM. Testing the effects of a decision‐making and risk reduction program for cancer‐surviving adolescents. Oncology Nursing Forum 1999;26(9):1475‐86. - PubMed
Holmes‐Rovner 1996
    1. Holmes‐Rovner MJ, Kroll N, Schmitt DR, Rovner ML, Breer ML, Rothert G. Patient satisfaction with health care decisions: the satisfaction with decision scale. Medical Decision Making 1996;16(1):58‐64. - PubMed
Ishibashi 2001
    1. Ishibashi A. The needs of children and adolescents with cancer for information and support. Cancer Nursing 2001;24(1):61‐7. - PubMed
Jackson 2008
    1. Jackson C, Cheater FM, Reid I. A systematic review of decision support needs of parents making child health decisions. Health Expectations 2008;11:232‐51. - PMC - PubMed
Jemal 2009
    1. Jemal A, Siegel R, Ward E, Hao Y, Xu J, Thun MJ. Cancer statistics 2009. CA: A Cancer Journal for Clinicians 2009;59(4):225‐49. - PubMed
Joosten 2008
    1. Joosten EAG, DeFuentes‐Merillas L, Weert GH, Sensky T, Staak CPF, Jong CAJ. Systematic review of the effects of shared decision‐making on patient satisfaction, treatment adherence and health status. Psychotherapy Psychosomatic 2008;77:219‐26. - PubMed
Kremer 2016
    1. Kremer LCM, Jellema P, Leclercq E, Noorman JK, Dalen EC. Cochrane Childhood Cancer Group. About The Cochrane Collaboration (Cochrane Review Groups (CRGs)) 2016, Issue 1:Art. No.: CHILDCA.
Landgraf 1996
    1. Landgraf JM, Abetz L, Ware JR. Child Health Questionnaire (CHQ): a Users Manual. Boston: The Health Institute, 1996.
Last 1996
    1. Last BF, Veldhuisen AMH. Information about diagnosis and prognosis related to anxiety and depression in children with cancer aged 16 years. European Journal of Cancer Care 1996;32A(2):290‐4. - PubMed
Lerman 1990
    1. Lerman CE, Brody DS, Caputo GC, Smith DG, Lazaro CG, Wolfson HG. Patients' perceived involvement in care scale: relationship to attitudes about illness and medical care. Journal of General Internal Medicine 1990;5(1):29‐33. - PubMed
Légaré 2014
    1. Légaré F, Stacey D, Turcotte S, Cossi MJ, Kryworuchko J, Graham ID, et al. Interventions for improving the adoption of shared decision making by healthcare professionals. Cochrane Database of Systematic Reviews 2014, Issue 9. [DOI: 10.1002/14651858.CD006732.pub3] - DOI - PubMed
Makoul 1998
    1. Makoul G. Perpetuating passivity: reliance and reciprocal determinism in physician‐patient interaction. Journal of Health Communication 1998;3:233‐59. - PubMed
Makoul 2006
    1. Makoul G, Clayman ML. An integrative model of shared decision making in medical encounters. Patient Education and Counseling 2006;60:301‐12. - PubMed
McCabe 1996
    1. McCabe MA. Involving children and adolescents in medical decision making: developmental and clinical considerations. Journal of Pediatric Psychology 1996;21:505‐16. - PubMed
McPherson 2006
    1. McPherson AC, Glazebrook C, Forster D, James C, Smyth A. A randomized controlled trial of an interactive educational computer package for children with asthma. Pediatrics 2006;117:1046‐54. - PubMed
Miller 2012
    1. Miller VA, Harris D. Measuring children's decision‐making involvement regarding chronic illness management. Journal of Pediatric Psychology 2012;37:292‐306. - PMC - PubMed
Moore 2006
    1. Moore JB, Kordick MF. Sources of conflict between families and health care professionals. Journal of Pediatric Oncology Nursing 2006;23(2):82‐91. - PubMed
Moore 2013
    1. Moore PM, Rivera Mercado S, Grez Artigues M, Lawrie TA. Communication skills training for healthcare professionals working with people who have cancer. Cochrane Database of Systematic Reviews 2013, Issue 3. [DOI: 10.1002/14651858.CD003751.pub3] - DOI - PMC - PubMed
O'Connor 1995
    1. O'Connor AM. Validation of a Decisional Conflict Scale. Medical Decision Making 1995;15:25‐30. - PubMed
O'Connor 2005
    1. O'Connor A, Llewellyn‐Thomas H, Stacey D. International Patient Decision Aid Standards Collaboration. Background Document. ipdas.ohri.ca/IPDAS_Background.pdf (accessed 20 April 2013).
Pyke‐Grimm 2006
    1. Pyke‐Grimm KA, Stewart JL, Kelly KP, Degner LF. Parents of children with cancer: factors influencing their treatment decision making roles. Journal of Pediatric Nursing 2006;21:350‐61. - PubMed
Ranmal 2008
    1. Ranmal R, Prictor M, Scott JT. Interventions for improving communication with children and adolescents about their cancer. Cochrane Database of Systematic Reviews 2008, Issue 4. [DOI: 10.1002/14651858.CD002969.pub2] - DOI - PMC - PubMed
RevMan 2014 [Computer program]
    1. The Nordic Cochrane Centre, The Cochrane Collaboration. Review Manager (RevMan). Version 5.3. Copenhagen: The Nordic Cochrane Centre, The Cochrane Collaboration, 2014.
Roter 1991
    1. Roter D. The Roter Method of Interaction Process Analysis. Baltimore: Johns Hopkins University, 1991.
Runeson 2002
    1. Runeson I, Hallstrom I, Elander G, Hermeren G. Children's participation in the decision‐making process during hospitalization: an observational study. Nursing Ethics 2002;9(6):583‐98. - PubMed
Scott 2003
    1. Scott JT, Prictor MJ, Harmsen M, Broom A, Entwistle V, Sowden AJ, et al. Interventions for improving communication with children and adolescents about a family member's cancer. Cochrane Database of Systematic Reviews 2003, Issue 4. [DOI: 10.1002/14651858.CD004511] - DOI - PubMed
Spielberger 1973
    1. Spielberger C, Edwards C, Lushene R, Montuori J, Platzek D. Preliminary Test Manual for the State‐Trait Inventory for Children. Palo Alto: Consulting Psychologists Press, 1973.
Spinetta 2003
    1. Spinetta JJ, Masera G, Jankovic M, Oppenheim D, Martins A, Arush WB, et al. Valid informed consent and participative decision‐making in children with cancer and their parents: a report of the SIOP Working Committee on psychosocial issues in pediatric oncology. Medical Pediatric Oncology 2003;40:244‐6. - PubMed
Stacey 2014
    1. Stacey D, Légaré F, Col NF, Bennett CL, Barry MJ, Eden KB, et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database of Systematic Reviews 2014, Issue 1. [DOI: 10.1002/14651858.CD001431.pub4] - DOI - PubMed
Stegenga 2008
    1. Stegenga K, Ward‐Smith P. The adolescent perspective on participation in treatment decision making: a pilot study. Journal of Pediatric Oncology Nursing 2008;25(2):112‐7. - PubMed
Suris 2010
    1. Suris JC, Akré C, Berchtold A, Bélanger RE, Michaud PA. Chronically connected? Internet use among adolescents with chronic conditions. Journal of Adolescent Health 2010;46(2):200‐2. - PubMed
Tates 2001
    1. Tates K, Meeuwesen L. Doctor‐parent‐child communication: a review of the literature. Social Science and Medicine 2001;52:839‐51. - PubMed
Tates 2002
    1. Tates K, Meeuwesen L, Bensing J, Elbers E. Affective and instrumental behaviour in doctor‐parent‐child communication. Psychology and Health 2002;17(3):281‐95.
Tiffenberg 2000
    1. Tiffenberg J, Wood E, Alonso A, Tossuti M, Vincente M. A randomized trial of ACINDES: a child centered training model for children with chronic illnesses (asthma and epilepsy). Journal of Urban Health 2000;77(2):280‐97. - PMC - PubMed
United Nations 1989
    1. United Nations. United Nations Convention on the Rights of the Child. Geneva: United Nations, 1989.
Varni 2002
    1. Varni JW, Burwinkle TM, Katz ER, Meeske K, Dickinson P. The PedsQL in pediatric cancer. Cancer 2002;94(7):2090‐6. - PubMed
Wallston 1978
    1. Wallston KA, Wallston BS, DeVellis R. Development of the Multidimensional Health Locus of Control (MHLC) scales. Health Education Monograph 1978;6(2):160‐70. - PubMed
White 1996
    1. White F. Parent‐adolescent communication and adolescent decision‐making. Journal of Family Studies 1996;2(1):41‐56.
Whitney 2006
    1. Whitney SN, Ethier AM, Fruge E, Berg S, McCullough LB, Hockenberry M. Decision making in pediatric oncology: who should take the lead? The decisional priority in pediatric oncology model. Journal of Clinical Oncology 2006;24:160‐5. - PubMed
Wicks 2010
    1. Wicks L, Mitchell A. The adolescent cancer experience: loss of control and benefit finding. European Journal of Cancer Care 2010;19(6):778‐785. - PubMed
Wiering 2016
    1. Wiering BM, Noordman J, Tates K, Zwaanswijk M, Elwyn G, Bont ESJM, et al. Sharing decisions during diagnostic consultations; an observational study in pediatric oncology. Patient Education and Counseling 2016;99(1):61‐7. - PubMed
Wood 2010
    1. Wood D, Turner G, Straw F. Not just a phase: a guide to the participation of children and young people in health services. Royal College of Paediatrics and Child Health 2010;1:1‐53.
Young 2010
    1. Young AJ, Kim L, Shu L, Baker JN, Schmidt M, Camp JM, et al. Research agency and communication challenges in discussions of informed consent in pediatric cancer. Qualitative Health Research 2010;20:628‐43. - PubMed
Zwaanswijk 2007
    1. Zwaanswijk M, Tates K, Dulmen S, Hoogerbrugge PM, Kamps WA, Bensing JM. Young patients', parents', and survivors' communication preferences in paediatric oncology: results of online focus groups. BMC Pediatrics 2007;7(35):1‐10. - PMC - PubMed
Zwaanswijk 2011
    1. Zwaanswijk M, Tates K, Dulmen S, Hoogerbrugge P, Kamps WA, Beishuizen A, et al. Communicating with child patients in pediatric oncology consultations: a vignette study on child patients', parents', and survivors' communication preferences. Psycho‐Oncology 2011;20:269‐77. - PubMed

References to other published versions of this review

Coyne 2011
    1. Coyne I, O'Mathúna DP, Gibson F, Shields L, Sheaf G. Interventions for promoting participation in shared decision‐making for children with cancer. Cochrane Database of Systematic Reviews 2011, Issue 2. [DOI: 10.1002/14651858.CD008970] - DOI - PMC - PubMed
Coyne 2013
    1. Coyne I, O'Mathúna DP, Gibson F, Shields L, Sheaf G. Interventions for promoting participation in shared decision‐making for children with cancer. Cochrane Database of Systematic Reviews 2013, Issue 6. [DOI: 10.1002/14651858.CD008970.pub2] - DOI - PubMed

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