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. 2019 May 23;5(5):CD012578.
doi: 10.1002/14651858.CD012578.pub2.

Interventions for promoting participation in shared decision-making for children and adolescents with cystic fibrosis

Helen Malone  1 , Susan Biggar, Sheila Javadpour, Zai Edworthy, Greg Sheaf, Imelda Coyne
Affiliations

Interventions for promoting participation in shared decision-making for children and adolescents with cystic fibrosis

Helen Malone et al. Cochrane Database Syst Rev. .

Abstract

Background: Shared decision-making is important in child and adolescent healthcare because there is growing international recognition of children and young people's rights to be included in decisions that affect them. In order for young people to participate effectively in shared decision-making they need to develop the skills of engagement with healthcare professionals and confidence in interacting with them. They also need to learn how to manage their condition and treatments on their own when they move into adulthood. Children and young people who participate in shared decision-making in healthcare are likely to be more informed, feel more prepared, and experience less anxiety about the unknown. Significant improvements in cystic fibrosis (CF) survival over recent decades, due to improved therapies and better management of care, means that young people with CF are routinely transitioning to adult healthcare where increasing emphasis on self-management brings greater complexity in decision-making. We need to know what interventions are effective in promoting shared decision-making for young people with CF.

Objectives: To assess the effectiveness of interventions that promote participation in shared decision-making for children and adolescents (aged between four and 18 years) with CF.

Search methods: We searched the Cochrane Cystic Fibrosis and Genetic Disorders Group's Cystic Fibrosis Trials Register, compiled from electronic database searches and handsearches of journals and conference abstract books. We also searched the reference lists of articles and reviews addressing shared decision-making.Date of most recent search: 12 March 2019.We searched PubMed, CINAHL (EBSCO), Embase (Elsevier), PsycINFO (EBSCO), WHO ICTRP, ASSIA (ProQuest), ERIC (ProQuest), ProQuest Dissertations and Theses, and ClinicalTrials.gov. We contacted study authors with published relevant research in shared decision-making for adults to ask if they were aware of any published or ongoing studies on the promotion of the intervention for children or adolescents (or both) with CF.Date of most recent search: 19 March 2019.

Selection criteria: We planned to include randomised controlled trials (RCTs) (but not cross-over RCTs) of interventions promoting shared decision-making for children and adolescents with CF aged between four and 18 years, such as information provision, booklets, two-way interaction, checking understanding (by the participant), preparation to participate in a healthcare decision, decision-aids, and training interventions or educational programs. We planned to include interventions aimed at children or adolescents (or both), parents or healthcare professionals or any combination of these groups provided that the focus was aimed at promoting shared decision-making for children and adolescents with CF.

Data collection and analysis: Two authors independently reviewed papers identified in the searches.

Main results: No eligible RCTs were identified for inclusion in this systematic review.

Authors' conclusions: We were unable to identify RCTs with evidence which would support healthcare policy-making and practice related to implementation of shared decision-making for children and adolescents (aged between four and 18 years) with CF). We hope that having identified this gap in research, awareness will increase amongst researchers of the need to design high-quality shared decision-making interventions for young people with CF, perhaps adapted from existing models for adults, and to test these interventions and children's preferences in RCTs. It is also important to target health professionals with evidence-based education programmes on shared decision-making and a need for international consensus on addressing the variability in education programmes.

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Conflict of interest statement

Helen Malone declares no known conflict of interest.

Imelda Coyne declares no known conflict of interest.

Greg Sheaf declares no known conflict of interest.

Sheila Javadpour declares no known conflict of interest.

Susan Biggar declares no known conflict of interest.

Zai Edworthy declares no known conflict of interest.

Figures

1
1
Study flow diagram showing a summary of the results of the searches
See this image and copyright information in PMC

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References

References to studies excluded from this review

Alpern 2011 {published and unpublished data}
    1. Alpern AN, Mclean KA, Quitter AI. Coping efficacy moderates disease severity and health‐related quality of life in adolescents with CF. Pediatric Pulmonology 2011;46 Suppl 34:410. [Abstract no.: 542; CFGD Register: MH28b]
    1. Kimberg CI, Alpern AN, Armenteros EM, Quittner AL. Coping strategies demonstrated by caregivers of adolescents with CF. Pediatric Pulmonology 2010;45 Suppl 33:446. [Abstract no.: 624; CFGD Register: MH28a]
Andrade 2013 {published data only}
    1. Andrade T, Guitton B, Monteiro E, Deolindo V. Education for physiotherapeutic caregivers of patients with cystic fibrosis. Journal of Cystic Fibrosis 2013;12 Suppl 1:S106. [Abstract no.: 225; CFGD Register: MH34]
Austin 2015 {published data only}
    1. Austin CA, Mohottige D, Sudore RL, Smith AK, Hanson LC. Tools to promote shared decision making in serious illness: A systematic review. JAMA Internal Medicine 2015;175(7):1213‐21. - PMC - PubMed
Belsky 1994 {published data only}
    1. Belsky J, Khanna P. The effects of self‐hypnosis for children with cystic fibrosis: a pilot study. American Journal of Clinical Hypnosis 1994;36(4):282‐92. [CFGD Register: MH14] - PubMed
Blackwell 2013 {published data only}
    1. Blackwell SL, Marciel K K, Quittner AL. Utilization of patient‐reported outcomes as a step towards collaborative medicine. Paediatric Respiratory Reviews 2013;14(3):146–51. - PubMed
Blackwell 2015 {published data only}
    1. Alpern AN, McLean KA, Becker EM, Riekert KA, Quittner AL. Predictors of providers' competence delivering a problem‐solving adherence intervention. Pediatric Pulmonology 2016;51(S45):458. [CFGD Register: MH29p]
    1. Alpern AN, McLean KA, Marciel KK, Zhang J, Riekert KA, Quittner AL. Effects of clinical supervision on treatment fidelity in ICare. Pediatric Pulmonology 2012;47(S35):433. [Abstract no.: 572; CFGD Register: MH29g]
    1. Barker D, Quittner AL, Riekert KA. Relating patterns of social support from friends and family to health‐related quality of life. Pediatric Pulmonology 2013;48(Suppl 36):433. [Abstract no.: 615; CFGD Register: MH29k]
    1. Blackwell LS, Marciel KK, Romero CV, Quittner AL. Pain assessment in children and adolescents with cystic fibrosis: utilizing an online pain diary. Pediatric Pulmonology 2011;46(S34):411. [Abstract no.: 546; CFGD Register: MH29d]
    1. Blackwell LS, Quittner AL. Daily pain in adolescents with CF: Effects on adherence, psychological symptoms, and health‐related quality of life. Pediatric Pulmonology 2015;50(3):244‐51. [CFGD Register: MH29l] - PubMed
Blumenthal 2006 {published data only}
    1. Blumenthal JA, Babyak MA, Carney RM, Keefe FJ, Davis RD, LaCaille RA, et al. Telephone‐based coping skills training for patients awaiting lung transplantation. Journal of Consulting and Clinical Psychology 2006;74(3):535–44. [CFGD Register: MH50a] - PubMed
    1. Hoffman BM, Stonerock GL, Smith PJ, O'Hayer CV, Palmer S, Davis RD, et al. Development and psychometric properties of the pulmonary‐specific quality‐of‐life scale in lung transplant patients. Journal of Heart and Lung Transplantation 2015;34(8):1058‐65. [CFGD Register: MH50c] - PMC - PubMed
    1. Smith PJ, Blumenthal JA, Trulock EP, Freedland KE, Carney RM, Davis RD, et al. Psychosocial predictors of mortality following lung transplantation. American Journal of Transplantation 2016;16(1):271‐7. [CFGD Register: MH50b] - PMC - PubMed
Bryon 2000 {published data only}
    1. Bryon M, Burton J, Tostevin M, Madge S. A home visit programme to improve health status and psychosocial functioning of families with child with CF. Pediatric Pulmonology 2000;30 Supplement 20:336. [Abstract no.: 565; CFGD Register: MH9]
Cannon 1999 {published data only}
    1. Cannon C, Benitez J, Scarbary J, Taylor K, Guill M. In‐home videoconferencing for cystic fibrosis patient education. Pediatric Pulmonology 1999;28 Supplement 19:333. [CFGD Register: MH6]
Christian 2006 {published data only}
    1. *Christian BJ, D'Auria JP. Building life‐skills for children with cystic fibrosis: effectiveness of an intervention. Nursing Research 2006;55(5):300‐7. [CFGD Register: MH7f] - PubMed
    1. Christian B. Functional disability and quality of life school‐age children with cystic fibrosis. Pediatric Pulmonology 2004;38 Suppl 27:356. [Abstract no.: 475; CFGD Register: MH7c]
    1. Christian B. The impact of chronic illness on quality of life in children with cystic fibrosis. Pediatric pulmonology 2006;41 Suppl 29:398. [Abstract no.: 529; CFGD Register: MH7e]
    1. Christian B. The interface between physical activity, growth, and pulmonary function with the psychosocial impact of cystic fibrosis in children. Pediatric Pulmonology 2005;40 Suppl 28:370. [Abstract no.: 504; CFGD Register: MH7d]
    1. Christian BJ, D'Auria J, Belyea M. Loneliness in school age children with cystic fibrosis. Pediatric Pulmonology 2003;36 Suppl 25:366. [Abstract no.: 517; CFGD Register: MH7b]
Cottrell 1996 {published and unpublished data}
    1. *Cottrell CK, Young GA, Creer TL, Holroyd KA, Kotses H. The development and evaluation of a self‐management program for cystic fibrosis. Pediatric Asthma, Allergy and Immunology 1996;10(3):109‐18. [CFGD Register: MH31a]
    1. Cottrell K. The effects of self‐management training in children/adolescents with cystic fibrosis. Thesis obtained from Ohio University 1994. [CFGD Register: MH31b]
Cruz 2007 {published data only}
    1. Cruz I, Snell C, Barker DH, Quittner AL, Drotar D. Effects of behavioral‐family systems therapy on family conflict and communication in adolescents with CF and their parents. Pediatric Pulmonology 2007; Vol. 42 Suppl 30:403. [CFGD Register: MH22b]
    1. McDonald L, Quittner AL, Grimley ME, Botteri M, Barker DH. Effects of a clinic‐based intervention on caregiving stress for parents of children with CF. Journal of Cystic Fibrosis 2007;6 Suppl 1:S75. [CFGD Register: MH22a]
Cummings 2011 {published and unpublished data}
    1. Cameron‐Tucker H, Cystic Fibrosis Research Team led by DW Reid. Telephone‐mentor training of health professionals to facilitate self‐management for people with cystic fibrosis. Asia Pacific Society of Respirology Conference. Gold Coast, 2007:Oral Poster: 1‐053.
    1. Cameron‐Tucker HL, Joseph L, Cummings E, Cystic Fibrosis Research Team led by Reid D. Outcomes of health‐mentor training to improve self‐management by people with cystic fibrosis (CF). Respirology 2009;14(s1):A58. [Poster: TP105]
    1. Chau S, Cummings E, Turner P. Experiences and insights from the development of a mobile self management system for cystic fibrosis sufferers in Tasmania. MedInfo. Brisbane, August 20 ‐24 2007.
    1. Cummings E, Hauser J, Cameron‐Tucker H, Fitzpatrick P, Jessup M, Walters EH, et al. Enhancing self‐efficacy for self‐management in people with cystic fibrosis. Studies in Health Technology and Informatics 2011;169:33‐7. [CFGD Register: MH24e] - PubMed
    1. Cummings EA, Courtney‐Pratt HM, Reid DW, Robinson A, Turner P, Walters EH, et al. Issues and experiences with technology supported development of patient self‐efficacy and self‐managed of chronic disease. Australasian Journal on Ageing 2006;25(Supp 1):A14‐15 [ISSN: 1440‐6381].
Davis 2004 {published data only}
    1. Davis MA, Quittner AL, Stack C. Controlled evaluation of the STARBRIGHT CD‐ROM program for children and adolescents with cystic fibrosis. Pediatric Pulmonology 2002;Suppl 24:351. [CFGD Register: MH10a] - PubMed
    1. Davis MA, Quittner AL, Stack CM, Yang MC. Controlled evaluation of the STARBRIGHT CD‐ROM program for children and adolescents with cystic fibrosis. Journal of Pediatric Psychology 2004;29(4):259‐67. [CFGD Register: MH10b] - PubMed
DeLambo 2004 {published data only}
    1. DeLambo KE, Ievers‐Landis CE, Drotar D, Quittner AL. Association of observed family relationship quality and problem‐solving skills with treatment adherence in older children and adolescents with cystic fibrosis. Journal of Pediatric Psychology 2004;29(5):343–53. [CFGD Register: MH36a] - PubMed
    1. Romero SL, Blackwell LS, Armenteros E, Quittner AL. Patient and parent‐reported conflict: age and gender differences and associations with disease severity. Pediatric Pulmonolgy 2010;45 Suppl 33:446. [Abstract no.: 623; CFGD Register: MH36b]
Downs 2006 {published data only}
    1. Downs JA, Roberts CM, Blackmorel AM, Souef PN, Jenkins SC. Benefits of an education programme on the self‐management of aerosol and airway clearance treatments for children with cystic fibrosis. Chronic Respiratory Disease 2006;3(19):19‐27. [CFGD Register: MH18] - PubMed
Farrell 2014 {published data only}
    1. Farrell MH, Christopher SA, Pean Kirschner A, Roedl SJ, O'Tool FO, Ahmad NY, et al. Improving the quality of physician communication with rapid‐throughput analysis and report cards. Patient Education and Counseling 2014;97(2):248–55. [CFGD Register: MH52] - PMC - PubMed
Happ 2013 {published data only}
    1. Happ MB, Hoffman LA, Higgins LW, Wolff DD, DiVirgilio D, Orenstein DM. Parent and child perceptions of a self‐regulated, home‐based exercise program for children with cystic fibrosis. Nursing Research 2013;62(5):305–14. - PMC - PubMed
Huang 2014 {published data only}
    1. Huang JS, Terrones L, Tompane T, Dillon L, Pian M, Gottschalk M, et al. Preparing adolescents with chronic disease for transition to adult care: a technology program. Pediatrics 2014;133(6):e1639‐e46. [CFGD Register: MH44] - PMC - PubMed
Jafari 2017 {unpublished data only}
    1. Jafari S. Effectiveness of partnership educational method on decreasing anxiety and stress in mothers of children with cystic fibrosis. Iranian Registry of Clinical Trials 2017.
Marciel 2010 {published data only}
    1. *Marciel KK, Saiman L, Quittell LM, Dawkins K, Quittner AL. Cell phone intervention to improve adherence: cystic fibrosis care team, patient, and parent perspectives. Pediatric Pulmonology 2010;45(2):157–64. [CFGD Register: MH33c] - PMC - PubMed
    1. Blackwell LS, Romero SL, Romero CV, McLean KA, Dawkins K, Hoag J, et al. CFfone: a social networking site for adolescents and young adults with CF. Pediatric Pulmonology 2012;47 Suppl 35:430. [Abstract no.: 562; CFGD Register: MH33b]
    1. Quittner AL, Romero SL, Blackwell LS, Marciel KK, Romero CV, Dawkins K, et al. Effect of CFfone on knowledge of disease management, psychological well‐being, and health‐related quality of life in adolescents and young adults with CF. Journal of Cystic Fibrosis 2012;11 Suppl 1:S137. [Abstract no.: 313; CFGD Register: MH33a]
    1. Quittner AL, Romero SL, Blackwell LS, McLean KA, Marciel K, Monzon AD, et al. Preliminary data on the efficacy of an online social network for adolescents with CF. 2013 American Journal of Respiratory and Critical Care Medicine; Vol. 187. [CFGD Register: MH33f]
    1. Quittner AL, Romero SL, Blackwell LS, McLean KA, Monzon AD, Dawkins K. Efficacy of an online social networking site: CFFONE results. Pediatric Pulmonology 2013;48 Suppl 36:135. [CFGD Register: MH33e; Summary no.: S7.2]
Quittner 2000 {published data only}
    1. Quittner AL, Drotar D, Levers‐Landis C, Slocum N, Seidner D, Jacobsen J. Adherence to medical treatments in adolescents with cystic fibrosis: The development and evaluation of family‐based interventions. In: Drotar D editor(s). Promoting adherence to medical treatments in chronic childhood illness: Concepts, methods and interventions. First Edition. Mahwah, New Jersey, USA: Lawrence Erlbaum Associates Publishers, 2000:383‐407.
Stabler 1981 {unpublished data only}
    1. Stabler B. Facilitating positive psychosocial adaptation in children with cystic fibrosis by increasing family communication and problem‐solving skills. A research report to the Cystic Fibrosis Foundation. North Carolina University, Chapel Hill. School of Medicine 1981.
Vandemheen 2009 {published and unpublished data}
    1. *Vandemheen K. Development and evaluation of a decision aid for cystic fibrosis patients considering referral of lung transplantation. Thesis submitted to the Faculty of Graduate and Postdoctoral Studies in part fulfilment of the requirements for the MSc degree in Nursing Health Sciences. University of Ottowa 2009.
    1. Arron S. Evaluation of a Decision Aid for Adult Cystic Fibrosis Patients Considering Bilateral Lung Transplantation. ClinicalTrials.gov Registry of Clinical trials USA 2006.
    1. Vandemheen K, Stacey D, Hennessey R, Gooyers T, Salgado J, Freitag A, et al. Translating research into practice: implementing a decision aid for adult cystic fibrosis patients. 2011 Pediatric Pulmonology;46:427. [CFGD Register: MH26c]
    1. Vandemheen KL, O’Connor A, Bell SC, Freitag A, Bye P, Jeanneret A, et al. Online data supplement to 'Randomized trial of a decision aid for patients with cystic fibrosis considering lung transplantation'. American Journal of Respiratory and Critical Care Medicine 2009;180(8):761‐68 Online. [CFGD Register: MH26b] - PubMed
    1. Vandemheen KL, O’Connor A, Bell SC, Freitag A, Bye P, Jeanneret A, et al. Randomized trial of a decision aid for patients with cystic fibrosis considering lung transplantation. American Journal of Respiratory and Critical Care Medicine 2009;180(8):761‐68. [CFGD Register: MH26a] - PubMed
Ward 2012 {unpublished data only}
    1. Ward N. Physiotherapy services for cystic fibrosis (CF) patients receiving home intravenous antibiotics: Australian practice. https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=363303 (accessed 8 April 2019 ).
Wells 2016 {unpublished data only}
    1. Wells E. The role of parenting interventions in promoting treatment cystic fibrosis adherence. Thesis submitted to The University of Manchester UK for the degree of Doctor of Clinical Psychology (ClinPsyD) in the Faculty of Biology Medicine and Health. 2016.

Additional references

Abhyankar 2013
    1. Abhyankar P, Volk RJ, Blumenthal‐Barby J, Bravo P, Buchholz A, Ozanne E, et al. Balancing the presentation of information and options in patient decision aids: an updated review. BMC Medical Informatics and Decision Making 2013;13(Suppl 2):S6. - PMC - PubMed
Ahmed 2011
    1. Ahmed A, Bissell C, Charlesworth C, Shervington D, Mannan E, Panny G, et al. Children and young people's views on the 'NHS: an information revolution and local healthwatch. www.oneeastmidlands.org.uk/sites/default/files/library/NCBHealthWatchrep... (first posted 21 Nov 2011).
Angst 1996
    1. Angst DB, Deatrick JA. Involvement in health care decisions: parents and children with chronic illness. Journal of Family Nursing 1996;2(2):174‐94. [DOI: 10.1177/107484079600200205] - DOI
Anton‐Paduraru 2014
    1. Anton‐Paduraru DT, Oltean C, Iliescu ML, Baciu G, Trandafir LM. Cystic‐fibrosis related diabetes. Revista Romana De Pediatrie 2014;LX111(1):7‐12.
Atkins 2004
    1. Atkins D, Best D, Briss PA, Eccles M, Falck‐Ytter Y, Flottorp S, et al. Grading quality of evidence and strength of recommendations. BMJ 2004;328(7454):1490‐4. - PMC - PubMed
Aziz 2017
    1. Aziz DA, Billoo AG, Qureshi A, Khalid M, Kirmani S. Clinical and laboratory profile of children with cystic fibrosis: experience of a tertiary care center in Pakistan. Pakistan Journal of Medical Sciences 2017;33(3):554‐59. - PMC - PubMed
Bejarano 2015
    1. Bejarano C, Fuzzell L, Clay C, Leonard S, Shirley E, Wysocki T. Shared decision making in pediatrics: a pilot and feasibility project. Clinical Practice in Pediatric Psychology 2015;3(1):25–36. [DOI: 10.1037/cpp0000086] - DOI
Brand 2013
    1. Brand PL, Stiggelbout AM. Effective follow‐up consultations: the importance of patient‐centered communication and shared decision making. Paediatric Respiratory Reviews 2013;14(4):224‐8. - PubMed
Bregnballe 2017
    1. Bregnballe V, Boisen KA, Schiøtz PO, Pressler T, Lomborg K. Flying the nest: a challenge for young adults with cystic fibrosis and their parents. Patient Preference and Adherence 2017;11:229–36. - PMC - PubMed
Brehaut 2003
    1. Brehaut JC, O'Connor AM, Wood TJ, Hack TF, Siminoff L, Gordon E, et al. Validation of a decision regret scale. Medical Decision Making 2003;23(4):281‐92. - PubMed
Brice 2007
    1. Brice P, Jarrett J, Mugford M. Genetic screening for cystic fibrosis: an overview of the science and the economics. Journal of Cystic Fibrosis 2007;6(4):255–61. - PubMed
Bronsveld 2001
    1. Bronsveld I, Mekus F, Bijman J, Ballmann M, Jonge HR, Laabs U, et al. Chloride conductance and genetic background modulate the cystic fibrosis phenotype of ΔF508 homozygous twins and siblings. Journal of Clinical Investigation 2001;108(11):1705–15. - PMC - PubMed
Bryon 2005
    1. Bryon M, Stramik S. (CFQ‐R) Cystic Fibrosis Questionnaire ‐ Revised. English Language Version. Forest Laboratories UK Ltd, Riverbridge House, Anchor Boulevard Crossways Business Park, Dartford, Kent, DA2 6SL.. Kent, 2005.
Buntain 2004
    1. Buntain HM, Greer RM, Schluter PJ, Wong JC, Batch JA, Potter JM, et al. Bone mineral density in Australian children, adolescents and adults with cystic fibrosis: a controlled cross sectional study. Thorax 2004;59(2):149‐55. - PMC - PubMed
Cass 2006
    1. Cass H. The NHS Experience: The 'snakes and ladders' guide for patients and professionals. London & New York: Routledge, 2006.
Chalmers 1993
    1. Chalmers I, Enkin M, Keirse M. Preparing and updating systematic reviews of randomized controlled trials of health care. Milbank Quarterly 1993;71(3):411‐37. - PubMed
Chomik 2014
    1. Chomik S, Klincewicz B, Cichy W. Disease specific knowledge about cystic fibrosis, patient education and counselling in Poland. Annals of Agricultural and Environmental Medicine 2014;21(2):420‐4. - PubMed
Chuang 2014
    1. Chuang S, Doumit M, McDonald R, Hennessy E, Katz T, Jaffe A. Annual review clinic improves care in children with cystic fibrosis. Journal of Cystic Fibrosis 2014;13(2):186‐9. - PubMed
Connett 2015
    1. Connett GJ, Pike KC. Nutritional outcomes in cystic fibrosis ‐ are we doing enough?. Respiratory Reviews 2015;16 Suppl:31‐4. [DOI: 10.1016/j.prrv.2015.07.015] - DOI - PubMed
Conway 2014
    1. Conway S, Balfour‐Lynn IM, Rijcke K, Drevinek P, Foweraker J, Havermans T, et al. European Cystic Fibrosis Society standards of care: framework for the cystic fibrosis centre. Journal of Cystic Fibrosis 2014;13 Suppl 1:S3‐22. [DOI: 10.1016/j.jcf.2014.03.009] - DOI - PMC - PubMed
Covidence 2019 [Computer program]
    1. Veritas Health Innovation. Covidence systematic review software. Melbourne, Australia: Veritas Health Innovation, 2019.
Coyne 2006
    1. Coyne I. Children's experiences of hospitalization. Journal of Child Health Care 2006;10(4):326‐36. - PubMed
Coyne 2008
    1. Coyne I. Children’s participation in consultations and decision‐making at health service level: A review of the literature. International Journal of Nursing Studies 2008;45(11):1682–9. - PubMed
Coyne 2013
    1. Coyne I, O'Mathuna DP, Gibson R, 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
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 2014;18(3):273‐80. - PubMed
Coyne 2017
    1. Coyne I, Sheehan AM, Heery E, While AE. Improving transition to adult healthcare for young people with cystic fibrosis: a systematic review. Journal of Child Health Care 2017;21(3):312‐30. - PubMed
Cystic Fibrosis Australia 2013
    1. Cystic Fibrosis Australia. Australian Cystic Fibrosis Data Registry. www.cysticfibrosis.org.au/data‐registry 2013 (accessed 14 April 2019).
Cystic Fibrosis Foundation 2012
    1. Cystic Fibrosis Foundation. Cystic Fibrosis Foundation Patient Registry 2012. Annual Data Report. www.cysticfibrosisdata.org/reportsUS.html (accessed 8 April 2019).
Cystic Fibrosis Foundation 2019
    1. Cystic Fibrosis Foundation. What is Cystic Fibrosis. https://www.cff.org/What‐is‐CF/About‐Cystic‐Fibrosis/ (accessed 9 April 2019).
Cystic Fibrosis Registry of Ireland 2019
    1. Cystic Fibrosis Registry of Ireland. Cystic Fibrosis Registry of Ireland. www.cfri.ie/ 2019 (accessed 14 April 2019).
Cystic Fibrosis Worldwide 2019
    1. Cystic Fibrosis Worldwide. What is cystic fibrosis. www.cfww.org/what‐is‐cystic‐fibrosis (accessed 14 April 2019).
De Boer 2013
    1. Boer P. Perceived value of CME systems in meeting the learning needs of orthopaedic surgeons in community hospitals. AMEE 2013 Conference; 2013 Aug 24 ‐ 28; Prague. 2013:363. [Abstract No.: 7C/3]
Deeks 2011
    1. Deeks JJ, Higgins JPT, Altman DG on behalf of the Cochrane Statistical Methods Group. Chapter 9 Analysing data and undertaking meta‐analysis. In: 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.
Dodge 2007
    1. Dodge JA, Lewis PA, Stanton M, Wilsher J. Cystic fibrosis mortality and survival in the UK:1947‐2003. European Respiratory Journal 2007;29(3):522‐6. - PubMed
Dokken 2000
    1. Dokken D, Sydnor‐Greenberg N. Exploring complementary and alternative medicine in pediatrics: parents and professionals working together for new understanding. Pediatric Nursing 2000;26(4):383‐90. - PubMed
Donner 1980
    1. Donner A, Koval JJ. The estimation of intraclass correlation in the analysis of family data. Biometrics 1980;36(1):19‐25. - PubMed
Drayton 2014
    1. Drayton N, Reddy D. How an active learning initiative identified shared decision making as a key influence in patient care. International Practice Development Journal 2014;4(2):1‐4.
Duguépéroux 2008
    1. Duguépéroux I, Tamalet A, Sermet‐Gaudelus I, Bourgeois M, Gérardin M, Desmazes‐Dufeu N, et al. Clinical changes of patients with cystic fibrosis during transition from pediatric to adult care. Journal of Adolescent Health. 2008;43(5):459‐65. - PubMed
Dyce 2015
    1. Dyce P. The diagnosis and management of cystic fibrosis‐related diabetes. Journal of Diabetes Nursing 2015;19(3):92‐6.
Eaton 2004
    1. Eaton WW, Muntaner C, Smith C, Tien A, Ybarra M. Center for Epidemiologic Studies Depression Scale: Review and revision (CESD and CESD‐R). In: Maruish ME, ed. The Use of Psychological Testing for Treatment Planning and Outcomes Assessment. 3rd Edition. Mahwah, New Jersey: Lawrence Erlbaum Associates, 2004:363‐377.
Elf 2015
    1. Elf M, Fröst P, Lindahl G, Wijk H. Shared decision making in designing new healthcare environments—time to begin improving quality. BMC Health Services Research 2015;15:114. [DOI: 10.1186/s12913-015-0782-7] - DOI - PMC - 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(2):93‐9. - PMC - PubMed
Elwyn 2012
    1. Elwyn G, Frosch D, Thomson R, Joseph‐Williams N, Lloyd A, Kinnersley P, et al. Shared Decision Making: A Model for Clinical Practice. Journal of General Internal Medicine 2012;27(10):1361‐7. - PMC - PubMed
Elwyn 2013a
    1. Elwyn G, Tsulukidze M, Edwards A, Légaré F, Newcombe R. Using a ‘talk’ model of shared decision making to propose an observation‐based measure: Observer OPTION 5 Item. Patient Education and Counseling 2013;93(2):265–71. - PubMed
Elwyn 2013b
    1. Elwyn G, Tilburt J, Montori VM. The ethical imperative for shared decision‐making. European Journal for Person Centered Medicine 2013;1(1):129‐31.
Elwyn 2016
    1. Elwyn G, Frosch DL, Kobrin S. Implementing shared decision‐making: consider all the consequences. Implementation Science 2016;11(14):1‐10. [DOI: 10.1186/s13012-016-0480-9] - DOI - PMC - PubMed
Endnote X9
    1. Clarivate Analytics. Reference management software. https://clarivate.libguides.com/endnote_training/home 2019 (accessed 8 April 2019).
Farrell 2008
    1. Farrell PM, Rosenstein BJ, White TB, Accurso FJ, Castellani C, Cutting GR, et al. Guidelines for diagnosis of cystic fibrosis in newborns through older adults: Cystic Fibrosis Foundation consensus report. Journal of Pediatrics 2008;153(2):S4–S14. [DOI: 10.1016/j.jpeds.2008.05.005] - DOI - PMC - PubMed
Farrell 2008a
    1. Farrell PM. The prevalence of cystic fibrosis in the European Union. Journal of Cystic Fibrosis 2008;7(5):450–3. - PubMed
Farrell 2017
    1. Farrel PM, White TB, Howenstine MS, Munck A, Parad RB, Rosenfeld M, et al. Diagnosis of cystic fibrosis in screened populations. The Journal of Pediatrics 2017;181(Supplement):S33‐44. - PubMed
Fennestra 2014
    1. Fennestra B, Boland L, Lawson ML, Harrison D, Kryworuchko J, Leblanc M, et al. Interventions to support children's engagement in health‐related decisions: a systematic review. BMC Pediatrics 2014;14(109):1‐11. - PMC - PubMed
Fiks 2010
    1. Fiks AG, Jimenez ME. The promise of shared decision‐making in paediatrics. Acta Paediatrica 2010;99(10):1464–6. [DOI: 10.1111/j.1651-2227.2010.01978.x] - DOI - PMC - PubMed
Fixter 2017
    1. Fixter V, Butler C, Daniels J, Phillips S. A qualitative analysis of the Information needs of parents of children with cystic fibrosis prior to first admission. Journal of Pediatric Nursing 2017;34:e29–e33. [DOI: 10.1016/j.pedn.2017.01.007] - DOI - PubMed
Furukawa 2006
    1. Furukawa TA, Barbui C, Cipriani A, Brambilla P, Watanabe N. Imputing missing standard deviations in meta‐analyses can provide accurate results. Journal of Clinical Epidemiology 2006;59(1):7‐10. - PubMed
Gee 2000
    1. Gee L, Abbott J, Conway SP, Etherington C, Webb AK. Development of a disease specific health related quality of life measure for adults and adolescents with cystic fibrosis. Thorax 2000;55(11):946–95. - PMC - PubMed
GOSH 2019
    1. Great Ormond Street Hospital for Children. GOSH information sheet: Cystic Fibrosis Annual Reviews. www.gosh.nhs.uk/medical‐information‐0/procedures‐and‐treatments/cystic‐f... (accessed 9 April 2019).
Gotink 2015
    1. Gotink RA, Chu P, Jan J. V. Busschbach JJV, Benson H, Fricchione GL, Hunink MGM. Standardised mindfulness‐based interventions in healthcare: an overview of systematic reviews and meta‐analyses of RCTs. PLoS ONE 2015;10(4):e0124344. [DOI: 10.1371/journal.pone.0124344] - DOI - PMC - PubMed
Graham 1995
    1. Graham ID, O'Connor AM. User Manual – Preparation for Decision Making Scale [modified 2010]. Ottawa Hospital Research Institute. http://decisionaid.ohri.ca/docs/develop/User_Manuals/UM_PrepDM.pdf (accessed 14 April 2019).
Gulbrandsen 2016
    1. Gulbrandsen P, Clayman ML, Beach MC, Han PK, Boss EF, Ofstad EH, et al. Shared decision‐making as an existential journey: aiming for restored autonomous capacity. Patient Education and Counseling 2016;99(9):1505‐10. - PubMed
Hansen 2016
    1. Hansen R, Willy T. Patient autonomy ‐ what does it mean for clinical decision‐making in children and adolescents?. International E‐Journal of Science, Medicine & Education 2016;10(1):3‐9.
Harris 1993
    1. Harris A, Argent BE. The cystic fibrosis gene and its product CFTR. Seminars in Cell Biology 1993;4(1):37‐44. - PubMed
Harris 2008
    1. Harris M, Taylor G. Medical Statistics Made Easy. 2nd Edition. Bath UK: Scion publishing Ltd, 2008.
Higgins 2003
    1. Higgins JPT, Thompson SG, Deeks JJ, Altman DG. Measuring inconsistency in meta‐analyses. BMJ 2003;327(7414):557‐60. - PMC - PubMed
Higgins 2011a
    1. Higgins JPT, Deeks JJ editor(s). Chapter 7: Selecting studies and collecting data. In: Higgins JPT, Green S editor(s). Cochrane Handbook for Systematic Reviews of Interventions Version 5.1.0 (updated March 2011). The Cochrane Collaboration, 2011. Available from handbook.cochrane.org.
Higgins 2011b
    1. Higgins JPT, Altman DG, Sterne JAC on behalf of the CSMG and the CBMG, editor(s). Chapter 8: Assessing risk of bias in included studies. In: Higgins JPT, Green S editor(s). Cochrane Handbook for Systematic Reviews of Interventions. Version 5.1.0 (updated March 2011). The Cochrane Collaboration, 2011. Available from handbook.cochrane.org.
Higgins 2011c
    1. Higgins JPT, Deeks JJ, Altman DG on behalf of the CSMG, editor(s). Chapter 16: Special topics in statistics. In: Higgins JPT, Green S editor(s). Cochrane Handbook of Systematic Reviews of Interventions. Version 5.1.0 (updated March 2011). The Cochrane Collaboration, 2011. Available from handbook.cochrane.org.
Homa 2015
    1. Homa K, Sabadosa KA, Marrow LC, Marshall BC. Experience of care from the perspective of individuals with cystic fibrosis and families: Results from 70 CFFoundation accredited programs in the USA. Journal of Cystic Fibrosis 2015;14(4):515–22. - PubMed
IPDAS 2013
    1. Led by Glyn Elwyn in the United Kingdom, Dawn Stacey in Canada. International Patient Decision Aid Standards Collaboration. http://ipdas.ohri.ca/ 2013 (accessed 8 April 2019).
Jackson 2018
    1. Jackson AD, Goss CH. Epidemiology of CF: How registries can be used to advance our understanding of the CF population. Journal of Cystic Fibrosis 2018;17:297–305. - PubMed
Jamieson 2014
    1. Jamieson N, Fitzgerald D, Singh‐Grewal D, Hanson CS, Craig JC, Tong A. Children’s experiences of cystic fibrosis: a systematic review of qualitative studies. Pediatrics 2014;133(6):e1683–97. [DOI: 10.1542/peds.2014-0009] - DOI - PubMed
Jessup 2016
    1. Jessup M, Douglas T, Priddis L, Branch‐Smith C, Shields L. Parental experience of information and education processes following diagnosis of their infant with cystic fibrosis via newborn screening. Journal of Pediatric Nursing 2016;31(3):e233‐41. - PubMed
Joffe 2003
    1. Joffe S. Rethink "affirmative agreement" but abandon "assent". The American Journal of Bioethics 2003;3(4):9‐11. - PubMed
Joffer 2016
    1. Joffer J, Jerden L, Ohman A, Flacking R. Exploring self‐rated health among adolescents: a think‐aloud study. BMC Public Health 2016;16(156):1‐10. - PMC - PubMed
Kerem 2005
    1. Kerem E, Conway S, Elborn S, Heijermann H. Standard of care for patients with cystic fibrosis: A European Concensus. Journal of Cystic Fibrosis 2005;4(1):7‐26. - PubMed
Kiessling 2013
    1. Kiessling C. Can a situational judgement test (SJT) measure cognitive aspects of communication skills for shared decision making in medicine and teaching education?. AMEE 2013 Conference; 2013 Aug 24‐28; Prague. 2013:295. [Abstract No.: 5M/4]
Klatt 2013
    1. Klatt ME, Moid F, Wong S, Maniate JM. Facilitating interprofessional education and collaboration through interactive teaching. AMEE 2013 Conference; 2013 Aug 24‐28; Prague. 2013:234. [Abstract no.: 10R]
Kodjebacheva 2016
    1. Kodjebacheva GD, Sabo T, Xiong J. Interventions to improve child‐parent‐medical provider communication: A systematic review. Social Science & Medicine 2016;166:120e‐127. [DOI: 10.1016/j.socscimed.2016.08.003] - DOI - PubMed
Kraus 2016
    1. Kraus CK, Marco CA. Shared decision making in the ED: ethical considerations. American Journal of Emergency Medicine 2016;34(8):1668‐72. - PubMed
Kroenke 2001
    1. Kroenke K, Spitzer RL, Williams JB. The PHQ‐9: validity of a brief depression severity measure. Journal of General Internal Medicine 2001;16(9):606‐13. - PMC - PubMed
Legare 2012
    1. Legare F, Turcotte S, Stacey D, Ratte S, Kryworuchko J, Graham AD. Patients’ perceptions of sharing in decisions: a systematic review of interventions to enhance shared decision‐making in routine clinical practice. Patient 2012;5(1):1‐19. - PubMed
Legare 2014
    1. Légaré F, Stacey D, Turcotte S, Cossi MJ, Kryworuchko J, Graham ID, Lyddiatt A, Politi MC, Thomson R, Elwyn G, Donner‐Banzhoff N. 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
Lehane 2018
    1. Lehane E, Leahy‐Warren P, O'Riordan C, Savage E, Drennan J, O'Tuathaigh C, et al. Evidence‐based practice education for healthcare professions: an expert view. BMJ Evidence‐Based Medicine 2018 Nov 15 [Epub ahead of print]. [10. 1136/ bmjebm‐ 2018‐111019] - PMC - PubMed
Lindley 2017
    1. Lindly OJ, Zuckerman KE, Mistry KB. Clarifying the predictive value of family‐centered care and shared decision making for pediatric healthcare outcomes using the medical expenditure panel survey. Health Services Research Part I 2017;52(1):313‐45. - PMC - PubMed
Lipstein 2012
    1. Lipstein EA, William B. Brinkman WB, Britto MT. What is known about parents’ treatment decisions? A narrative review of pediatric decision making. Medical Decision Making 2012;32(2):246–58. - PMC - PubMed
Lipstein 2013
    1. Lipstein EA, Muething KA, Dodds CM, Britto T. "I'm the One Taking It": Adolescent participation in chronic disease treatment decisions. Journal of Adolescent Health 2013;53(2):253‐9. - PubMed
Lipstein 2014
    1. Lipstein EA, Dodds CM, Britto MT. Real life clinic visits do not match the ideals of shared decision making. Journal of Pediatrics 2014;165(1):178‐83. - PMC - PubMed
Lipstein 2016
    1. Lipstein EA, Dodds CM, Lovell DJ, Denson LA, Britto MT. Making decisions about chronic disease treatment: A comparison of parents and their adolescent children. Health Expectations 2016;19(3):716‐26. [DOI: 10.1111/hex.12210] - DOI - PMC - PubMed
Long 2001
    1. Long JM, Fauset‐Jones J, Dixon MJ, Worthington‐Riley D, Sharma V, Patel L, et al. Annual review hospital visits for patients with cystic fibrosis. Journal of the Royal Society of Medicine 2001;94(Suppl 40):12‐6. - PMC - PubMed
Légaré 2010
    1. Légaré F, Kearing S, Clay K, Gagnon S, D’Amours D, Rousseau M, Connor A. Are you SURE? Assessing patient decisional conflict with a 4‐item screening test. Canadian Family Physician 2010;56(8):e308‐14. - PMC - PubMed
MacKenzie 2014
    1. MacKenzie T, Gifford AH, Sabadosa KA, Quinton HB, MS, Knapp EA, Goss CH, et al. Longevity of patients with cystic fibrosis in 2000 to 2010 and beyond: survival analysis of the Cystic Fibrosis Foundation patient registry. Annals of Internal Medicine 2014;161(4):233‐41. [DOI: 10.7326/M13-0636] - DOI - PMC - PubMed
Mak 2016
    1. Mak DYF, Sykes J, Stephenson AL, Lands LC. The benefits of newborn screening for cystic fibrosis: The Canadian experience. Journal of Cystic Fibrosis 2016;15(3):302‐8. [DOI: 10.1016/j.jcf.2016.04.001] - DOI - 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
Martiniano 2014
    1. Martiniano SL, Hoppe JE, Sagel SD, Zemanick ET. Advances in the diagnosis and treatment of cystic fibrosis. Advances in Pediatrics 2014;61(1):225‐43. [DOI: 10.1016/j.yapd.2014.03.002] - DOI - PubMed
Matel 2009
    1. Matel JL, Milla CE. Nutrition in cystic fibrosis. Seminars in Respiratory and Critical care Medicine 2009;30(5):579‐86. - PubMed
McKone 2015
    1. McKone EF, Velentgas P, Swenson AJ, Goss CH. Association of sweat chloride concentration at time of diagnosis and CFTR genotype with mortality and cystic fibrosis phenotype. Journal of Cystic Fibrosis 2015;14(5):580‐6. - PubMed
Miller 2008
    1. Miller VA, Reynolds WW, Nelson RM. Parent–child roles in decision making about medical research. Ethics and Behaviour 2008;18(2‐3):161–81.
Muller‐Juge 2013
    1. Muller‐Juge V, Cullati S, Blondon KS, Vu NV, Salvoldelli GL, Nendaz MR. Interprofessional collaboration between residents and nurses on a simulated general internal medicine ward: behaviours enhancing teamwork quality. AMEE 2013 Conference; 2013 Aug 24‐28; Prague. 2013:234. [Abstract No.: 4AA/16]
O'Connor 1995
    1. O'Connor AM. Validation of a decisional conflict scale. Medical Decision Making 1995;15(1):25‐30. [DOI: 10.1177/0272989X9501500105] - DOI - PubMed
O'Connor 2007a
    1. O'Connor AM, Wennberg JE, Légaré F, Llewellyn‐Thomas HA, Moulton BW, Sepucha KR, et al. Toward the 'tipping point': decision aids and informed patient choice. Health Affairs (Project Hope) 2007;26(3):716‐25. - PubMed
O'Connor 2007b
    1. O’Connor AM, Bennett C, Stacey D, Barry MJ, Col NF, Eden KB. Do Patient Decision Aids Meet Effectiveness Criteria of the International Patient Decision Aid Standards Collaboration? A Systematic Review and Meta‐analysis. Medical Decision Making 2007;27:554–74. - PubMed
Okumura 2014
    1. Okumura MJ, Ong T, Dawson D, Neilson D, Lewis N, Richard M, et al. Improving transition from paediatric to adult cystic fibrosis care: programme implementation and evaluation. British Medical Journals, Quality and Safety 2014;23 Suppl 1:i64‐72. - PMC - PubMed
Polaris 2014
    1. Polaris JJ, Katz JN. "Appropriate" diagnostic testing: supporting diagnostics with evidence‐based medicine and shared decision making. BMC Research Notes 2014;16(7):922. - PMC - PubMed
Polit 2008
    1. Polit DF, Beck CT. Nursing Research: generating and assessing evidence for nursing practice. 8th Edition. Tokyo: Wolters Kluwer/Lippincott Williams & Wilkins, 2008.
Quaschning 2013
    1. Quaschning K, Korner M, Wirtz M. Analyzing the effects of shared decision‐making, empathy and team interaction on patient satisfaction and treatment acceptance in medical rehabilitation using a structural equation modelling approach. Patient Education and Counseling 2013;91(2):167–75. - PubMed
Quittner 2005
    1. Quittner AL, Buu A, Messer MA, Modi AC, Watrous M. Development and validation of The Cystic Fibrosis Questionnaire in the United States: a health‐related quality‐of‐life measure for cystic fibrosis. Chest 2005;128(4):2347‐54. - PubMed
Quittner 2009
    1. Quittner AL, Modi AC, Wainwright C, Otto K, Kirihara J, Montgomery AB. Determination of the minimal clinically important difference scores for the Cystic Fibrosis Questionnaire‐Revised respiratory symptom scale in two populations of patients with cystic fibrosis and chronic Pseudomonas aeruginosa airway infection. Chest 2009;135(6):1610‐18. - PMC - PubMed
Quittner 2012
    1. Quittner AL, Sawicki GS, McMullen A, Rasouliyan L, Pasta DJ, Yegin A, Konstan MW. Psychometric evaluation of the cystic Fibrosis Questionnaire – Revised in a national survey. Quality of Life Research 2012;21:1267‐78. - PubMed
Quon 2012
    1. Quon BS, Aitken ML. Cystic fibrosis: what to expect now in the early adult years. Paediatric Respiratory Reviews 2012;13(4):206‐14. - PubMed
Rathert 2013
    1. Rathert C, Wyrwich MD, Boren SA. Patient‐centered care and outcomes: a systematic review of the literature. Medical Care Research and Review 2013;70(4):351‐79. [DOI: 10.1177/1077558712465774] - DOI - PubMed
RevMan 2014 [Computer program]
    1. Copenhagen: The Nordic Cochrane Centre, The Cochrane Collaboration. Review Manager (RevMan). Version 5.3. Copenhagen: The Nordic Cochrane Centre, The Cochrane Collaboration, 2014.
Robinson 2008
    1. Robinson JH, Callister LC, Berry JA, Dearing KA. Patient‐centered care and adherence: definitions and applications to improve outcomes. Journal of the American Academy of Nurse Practitioners 2008;20(12):600‐7. - PubMed
Roehrer 2013
    1. Roehrer E, Cummings E, Beggs S, Turner P, Hauser J, Micallef N, et al. Pilot evaluation of web enabled symptom monitoring in cystic fibrosis. Informatics for Health and Social Care 2013;38(4):354‐65. - PubMed
Runeson 2002
    1. Runeson I, Hallström I, Elander G, Hermerén G. Children's participation in the decision‐making process during hospitalization: an observational study. Nursing Ethics 2002;9(6):583‐98. - PubMed
Ryan 2013
    1. Ryan R, Hill S, Prictor M, McKenzie J. Cochrane Consumers and Communication Review Group Study Quality Guide. http://cccrg.cochrane.org/cochrane‐author‐resources. La Trobe University Melbourne, Published 2013. Approved (S, Hill) May 2013 (accessed 9 April 2019).
Sabadosa 2014
    1. Sabadosa KA, Batalden PB. The interdependent roles of patients, families and professionals in cystic fibrosis: a system for the co‐production of healthcare and its improvement. BMJ Quality and Safety 2014;23 Suppl 1:i90‐4. [DOI: 10.1136/bmjqs-2013-002782] - DOI - PubMed
Savage 2007
    1. Savage E, Callery P. Clinic consultations with children and parents on the dietary management of cystic fibrosis. Social Science & Medicine 2007;64(2):363‐74. - PubMed
Savage 2014
    1. Savage E, Beirne PV, Ni Chroinin M, Duff A, Fitzgerald T, Farrell D. Self‐management education for cystic fibrosis. Cochrane Database of Systematic Reviews 2014, Issue 9. [DOI: 10.1002/14651858.CD007641.pub3] - DOI - PMC - PubMed
Schünemann 2011a
    1. Schünemann HJ, Oxman AD, Higgins JPT, Vist GE, Glasziou P, Guyatt GH. Chapter 11: Presenting results and ‘Summary of findings’ tables. In: 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.
Schünemann 2011b
    1. Schünemann HJ, Oxman AD, Vist GE, Higgins JPT, Deeks JJ, Glasziou P, et al. Chapter 12: Interpreting results and drawing conclusions. In: 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.
Shafir 2012
    1. Shafir A, Rosenthal J. Shared decision making: advancing patient‐centered care through state and federal implementation. Informed Medical Decisions Foundation: partnerships for quality care. Report. https://nashp.org/?s=shared+decision+making&category_name= (accessed 9 April 2019).
Shields 2005
    1. Shields CG, Franks P, Fiscella K, Meldrum S, Epstein RM. Rochester Participatory Decision‐Making Scale (RPAD): reliability and validity. Annals Family Medicine 2005;3(5):436‐42. [DOI: 10.1370/afm.305] - DOI - PMC - PubMed
Siklosi 2010
    1. Siklosi KR, Gallagher CG, McKone EF. Development, validation, and implementation of a questionnaire assessing disease knowledge and understanding in adult cystic fibrosis patients. Journal of Cystic Fibrosis 2010;9(6):400‐5. - PubMed
Simcox 2009
    1. Simcox AM, Hewison J, Duff AJA, Morton AM, Conway SP. Decision‐making about pregnancy for women with cystic fibrosis. British Journal of Health Psychology 2009;14(Pt 2):323‐42. - PubMed
Simmonds 2014
    1. Simmonds NJ, Cullinan P, Hodson ME. Growing old with cystic fibrosis – the characteristics of long‐term survivors of cystic fibrosis. Respiratory Medicine 2009;103(4):629‐35. - PubMed
Spitzer 1999
    1. Spitzer RL, Kroenke K, Williams JBW. Validation and utility of a self‐report version of Prime MD: the PHQ study. JAMA 1999;282(18):1737‐44. - PubMed
Spitzer 2006
    1. Spitzer RL, Kroenke K, Williams JB, Löwe B. A brief measure for assessing generalized anxiety disorder: the GAD‐7. Archives of Internal Medicine 2006;166(10):1092‐7. - PubMed
Stacey 2010
    1. Stacey D, Légaré F, Pouliot S, Kryworuchko J, Dunn S. Shared decision making models to inform an interprofessional perspective on decision making: a theory analysis. Patient Education and Counseling. 2010;80(2):164‐72. - PubMed
Stacey 2015
    1. Stacey D, Vandemheen KL, Hennessey R, Gooyers T, Gaudet E, Mallick R, et al. Implementation of a cystic fibrosis lung transplant referral patient decision aid in routine clinical practice: an observational study. Implementation Science 2015;10(17):1‐9. - PMC - PubMed
Stacey 2017
    1. Stacey D, Légaré F, Lewis K, Barry MJ, Bennett CL, Eden KB, et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database of Systematic Reviews 2017, Issue 4. [DOI: 10.1002/14651858.CD001431.pub3] - DOI - PMC - PubMed
Sterne 2011a
    1. Sterne JAC, Egger M, Moher D on behalf of the CBMG, editor(s). Chapter 10: Addressing reporting biases. In: Higgins JPT, Green S editor(s). Cochrane Handbook for Systematic Reviews of Interventions Version 5.1.0 (updated March 2011). The Cochrane Collaboration, 2011. Available from handbook.cochrane.org.
Sterne 2011b
    1. Sterne JAC, Sutton AJ, Ioannidis JPA, Terrin N, Jones DR, Lau J, et al. Recommendations for examining and interpreting funnel plot asymmetry in meta‐analyses of randomized controlled trials. BMJ 2011;343:d4002. [DOI: 10.1136/bmj.d4002] - DOI - PubMed
Stultz 2012
    1. Stultz JS, Nahata MC. Computerized clinical decision support for medication prescribing and utilization in pediatrics. JAMA 2012;19(6):942‐53. - PMC - PubMed
Söderbäck 2011
    1. Söderbäck M, Coyne I, Harder M. The importance of including both a child perspective and the child’s perspective within health care settings to provide truly child‐centred care. Journal of Child Health Care 2011;15(2):99–106. - PubMed
The Health Foundation 2012
    1. The Health Foundation. Summit Report: Leading the way to shared decision making: the critical steps for the NHS Commissioning Board to 'make no decision about me without me' a reality. www.health.org.uk/publication/leading‐way‐shared‐decision‐making (accessed 14 April 2019).
UK CF Trust 2018
    1. UK CF Trust. UK Cystic Fibrosis Registry 2017 Annual Data Report. www.cysticfibrosis.org.uk/news/registry‐report‐2017 2018.
United Nations 1989
    1. United Nations. United Nations Convention on the Rights of the Child. www.unicef.org/crc/files/Rights_overview.pdf (accessed 14 April 2019).
Waligora 2016
    1. Waligora M, Rozynaska J, Piaseck J. Child’s objection to non‐beneficial research: capacity and distress based models. Medicine Health Care and Philosophy 2016;19(1):65‐70. [DOI: 10.1007/s11019-015-9643-8] - DOI - PMC - PubMed
Walters 1990
    1. Walters S. Doctor‐patient relationship in cystic fibrosis ‐ a patient's perspective. Holistic Medicine 1990;5(3‐4):157‐62.
Weiner 2014
    1. Weiner SJ, Kelly B, Ashley N, Binns‐Calvey A, Sharma G, Schwartz A, et al. Content coding for contextualization of care: evaluating physician performance at patient‐centered decision making. Medical Decision Making 2014;34(1):98‐106. - PubMed
Wennberg 2010
    1. Wennberg DE, Marr A, Lang L, O'Malley S, Bennett G. A randomized trial of a telephone care management strategy. The New England Journal of Medicine 2010;363(13):1245‐55. - PubMed
Westerman 2013
    1. Westerman GMA, Verheij F, Winkens B, Verhulst FC, Oort FVA. Structured shared decision‐making using dialogue and visualization: a randomized controlled trial. Patient Education and Counseling 2013;90(1):74‐81. - PubMed
WHO 2019
    1. World Health Organisation. Genomic Resource Centre. Genes and Human disease: cystic fibrosis. www.who.int/genomics/public/geneticdiseases/en/index2.html (accessed 9 April 2019).
Williams 2010
    1. Williams R, Barker H. Cystic Fibrosis. InnovAiT: Education and Inspiration for General Practice. 2010;3(12):743‐52.
Wyatt 2015
    1. Wyatt KD, Betsy L, Brickman WB, Lopez GP, Asi N, Erwin P, et al. Shared decision making in pediatrics: a systematic review and meta‐analysis. Academic Pediatrics 2015;15(6):573‐83. - PubMed
Zigmond 1983
    1. Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta Psychiatrica Scandinavica 1983;67(6):361‐70. - PubMed

Publication types