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Fertility preservation for people with cancer

Decision making

Clinical Question

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.[1] 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.[2] 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.[3] 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.[4]

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.[5] 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.[6] An online tool developed for patients also increased the knowledge of clinicians who viewed it.[4] 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.[7]

While there are a number of randomised clinical trials evaluating decision aids[2][5][4] 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.[8] 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.

Evidence Summary

Evidence summaryLevelReferences
Studies evaluating decision aids have shown reduced decisional conflict and improved education in people with cancer and their parents.I, II[2], [5], [4], [1]

Recommendation

Evidence-based recommendationGrade
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


References

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. Garvelink MM, Ter Kuile MM, Louwé LA, Hilders CGJM, Stiggelbout AM. Feasibility and effects of a decision aid about fertility preservation. Hum Fertil (Camb) 2017 Jun;20(2):104-112 Available from: http://www.ncbi.nlm.nih.gov/pubmed/27848252.
  6. 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.
  7. 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.
  8. 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.

Body of evidence

Do decision aids and other tools improve the quality of oncofertility service provision?

CitationLevel of EvidenceQuality of EvidenceSize of EffectNumber of PatientsRelevance of Evidence
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.IVLow2261
Ehrbar V, Urech C, Rochlitz C, Dällenbach RZ, Moffat R, Stiller R, et al. Fertility Preservation in Young Female Cancer Patients: Development and Pilot Testing of an Online Decision Aid. J Adolesc Young Adult Oncol 2018 Feb;7(1):30-36 Available from:http://www.ncbi.nlm.nih.gov/pubmed/28759303III-3Low3401
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/31398258IILowN/A79N/A
Garvelink MM, Ter Kuile MM, Louwé LA, Hilders CGJM, Stiggelbout AM. Feasibility and effects of a decision aid about fertility preservation. Hum Fertil (Camb) 2017 Jun;20(2):104-112 Available from:http://www.ncbi.nlm.nih.gov/pubmed/27848252IILow2361
Garvelink MM, ter Kuile MM, Fischer MJ, Louwé LA, Hilders CG, Kroep JR, et al. Development of a Decision Aid about fertility preservation for women with breast cancer in The Netherlands. J Psychosom Obstet Gynaecol 2013 Dec;34(4):170-8 Available from:http://www.ncbi.nlm.nih.gov/pubmed/24188788IVLow51851
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/29733237IVLow5N/A2
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/19061198IILowN/A20N/A
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/19061198N/AN/AN/AN/AN/A
Ito Y, Shiraishi E, Kato A, Haino T, Sugimoto K, Okamoto A, et al. The Utility of Decision Trees in Oncofertility Care in Japan. J Adolesc Young Adult Oncol 2017 Mar;6(1):186-189 Available from:http://www.ncbi.nlm.nih.gov/pubmed/27763800IVLowN/A35N/A
Kemertzis MA, Ranjithakumaran H, Hand M, Peate M, Gillam L, McCarthy M, et al. Fertility Preservation Toolkit: A Clinician Resource to Assist Clinical Discussion and Decision Making in Pediatric and Adolescent Oncology. J Pediatr Hematol Oncol 2018 Apr;40(3):e133-e139 Available from:http://www.ncbi.nlm.nih.gov/pubmed/29481385IVLow51092
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/22415294III-1Medium11201
Peate M, Meiser B, Friedlander M, Saunders C, Martinello R, Wakefield CE, et al. Development and pilot testing of a fertility decision aid for young women diagnosed with early breast cancer. Breast J 2011 Jan;17(1):112-4 Available from:http://www.ncbi.nlm.nih.gov/pubmed/21129095IVMedium5172
Silva C, Almeida-Santos AT, Melo C, Ribeiro Rama AC. Antineoplastic Agents and (In)fertility: Informing Patients to Improve Decisions. J Adolesc Young Adult Oncol 2018 Jun;7(3):306-314 Available from:http://www.ncbi.nlm.nih.gov/pubmed/29298112IVLow5313
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/30523651IVHigh27721
Woodard TL, Hoffman AS, Covarrubias LA, Holman D, Schover L, Bradford A, et al. The Pathways fertility preservation decision aid website for women with cancer: development and field testing. J Cancer Surviv 2018 Feb;12(1):101-114 Available from:http://www.ncbi.nlm.nih.gov/pubmed/29034438IVLow5201
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Cancer Council Australia