Do decision aids improve the understanding of the risk of infertility, fertility preservation options and improve the quality of decision making by people with cancer?
There is a growing body of evidence to suggest that decision aids (DAs) for cancer patients demonstrate significantly increased fertility preservation knowledge and decreased decisional conflict for patients. A randomised controlled trial of a DA developed in Switzerland found that women who used the online DA in addition to counselling experienced significantly lower decisional conflict compared to the control group who only received counselling. Similarly, women with newly diagnosed early-stage breast cancer who received a fertility-related decision aid, experienced reduced decisional conflict, decisional regret and improved knowledge of the impact of cancer on fertility. A pilot study of an interactive, computerised educational tool called Banking on Fatherhood found that patients who viewed the tool had significantly less decisional conflict about banking sperm than those who had not.
However, in some situations a DA may increase decisional conflict. A small randomised controlled trial comparing women who received brochures to others who completed the DA found that both approaches increased patient’s knowledge of fertility preservation, however the DA seemed to introduce slightly more decisional conflict. Further research is needed to explain why this occurred. Another challenge with the use of decision aids is that they are generally unable to provide personalised information about the risk of infertility after cancer treatment, due to the lack of evidence of the impact of specific treatments on fertility.
Decision support is not just for people with cancer. A small study of thirty-nine clinicians found that a fertility clinician decision support system would be beneficial to clinical practice. An online tool developed for patients also increased the knowledge of clinicians who viewed it. One group used medical illustrations and infographics in an electronic decision aid for parents of children and adolescents diagnosed with cancer. A pilot study suggests that the DA did not increase parental concern and would be useful for parents making a fertility preservation decision.
While there are a number of randomised clinical trials evaluating decision aids due to the difficulty in blinding the studies means that the risk of bias in these studies is high. More studies with larger numbers of patients and, if possible, blinding patients to allocation are needed to confirm that decision aids reduce decisional conflict for cancer patients.
However, there is a large body of evidence to show that health DAs developed using the Ottawa model results in improved decision-making outcomes. While more oncofertility studies are needed to provide evidence to inform implementation (especially in the young adolescents and children) it is quite clear that in principle DAs are effective in improving decision making. The Australian Commission on Safety and Quality in Health Care promotes the use of decision support tools by consumers to improve knowledge of benefits and harms and to support consumers when making decisions.
|Studies evaluating decision aids have shown reduced decisional conflict and improved education in people with cancer and their parents.||I, II||, , , |
|The use of decision support tools, such as fertility preservation decision aids, should be offered where available as they may assist people with cancer with the decision-making process.||A|
- Wang Y, Anazodo A, Logan S. Systematic review of fertility preservation patient decision aids for cancer patients. Psychooncology 2019 Mar;28(3):459-467 Available from: http://www.ncbi.nlm.nih.gov/pubmed/30523651.
- Ehrbar V, Urech C, Rochlitz C, Zanetti Dällenbach R, Moffat R, Stiller R, et al. Randomized controlled trial on the effect of an online decision aid for young female cancer patients regarding fertility preservation. Hum Reprod 2019 Sep 29;34(9):1726-1734 Available from: http://www.ncbi.nlm.nih.gov/pubmed/31398258.
- Peate M, Meiser B, Cheah BC, Saunders C, Butow P, Thewes B, et al. Making hard choices easier: a prospective, multicentre study to assess the efficacy of a fertility-related decision aid in young women with early-stage breast cancer. Br J Cancer 2012 Mar 13;106(6):1053-61 Available from: http://www.ncbi.nlm.nih.gov/pubmed/22415294.
- Huyghe E, Martinetti P, Sui D, Schover LR. Banking on Fatherhood: pilot studies of a computerized educational tool on sperm banking before cancer treatment. Psychooncology 2009 Sep;18(9):1011-4 Available from: http://www.ncbi.nlm.nih.gov/pubmed/19061198.
- Hand M, Kemertzis MA, Peate M, Gillam L, McCarthy M, Orme L, et al. A Clinical Decision Support System to Assist Pediatric Oncofertility: A Short Report. J Adolesc Young Adult Oncol 2018 Aug;7(4):509-513 Available from: http://www.ncbi.nlm.nih.gov/pubmed/29733237.
- Allingham C, Gillam L, McCarthy M, Zacharin M, Jayasuriya S, Heloury Y, Orme L, Sullivan M, Peate M, Jayasinghe Y. Fertility Preservation in Children and Adolescents With Cancer: Pilot of a Decision Aid for Parents of Children and Adolescents With Cancer. JMIR Pediatr Parent 2018 Nov 28;1(2):e10463.
- 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 Syst Rev 2017 Apr 12;4:CD001431 Available from: http://www.ncbi.nlm.nih.gov/pubmed/28402085.