Provide clear and complete information
|AYA patients and their families should be given written information about the issues discussed, and offered psychosocial support.||PP|
Health professionals involved in the care of AYAs with cancer need to provide information about fertility risks, preservation options and related issues in a clear and direct manner, with particular focus on:
Discussing fertility options with a patient can be a difficult and sometimes embarrassing conversation. Regardless it is an essential discussion, and when managed effectively, can reduce young patients’ emotional stress both at the time and later, after treatment has ended.
Effective and age-specific discussion
Health professionals are perceived as effective in discussing fertility issues with young people when they:
- are caring, empathetic, and address the emotional and psychological needs of the patient, not just the facts 
- show professional sensitivity and lack of embarrassment 
- provide adequate and appropriate detail that allows the patient to comprehend information 
- engage patients in making informed decisions regarding their treatment 
- offer patients the opportunity for further discussion and to ask questions after they have had time to consider the information and their options.
Directing information and decisions to the AYA patient
Health professionals should direct all information and decisions to the AYA patient, regardless of their age or apparent resistance to engage, and regardless of who else is involved in the discussion.
The AYA patient should determine the level of involvement of their parents, partners and other trusted family or friends in fertility discussions.
A trusted parent and/or partner can be beneficial as they act as an additional ‘pair of ears’, and can provide necessary emotional support and practical assistance e.g. organising fertility appointments. Most AYA patients choose to have a parent present, but may feel embarrassed when sexuality and fertility issues are discussed. Patients can feel additional pressure when their parents’ opinions differ from their own.
Including partners can be complex when the option of embryo freezing is suggested. The decision to store embryos with a current partner is a complex one for a young couple to make under pressure of time. The male partner of a young female patient may not voice any concerns as this may appear to be insensitive. If the couple later separates, the embryos must be disposed of, as the young woman is unable to use them without the partner’s consent. The patient is likely to be extremely distressed, particularly if this was her only method of fertility preservation.
Helping a young patient to provide informed consent when faced with complex information and limited time to make a decision requires age-appropriate resources and psychological and emotional support.
Written and/or audio-visual education resources help patients and their families recall information provided verbally and provide additional information that supports informed discussion and decision making.
There are many resources such as websites, brochures and guides that have been developed to help people diagnosed with cancer make informed decisions about their fertility preservation options. Some have been developed specifically for AYA patients.
Ideally patients and their parents and/or partners should be given an opportunity for additional discussion and to ask questions of their health professional after they have reviewed the written and/or audio-visual resources.
- All AYA patients and their families should be offered psychosocial support.
Patients may need support to help them make decisions about fertility and cope with the potential physical and psychological implications of their decision and of the fertility preservation process and related issues. This is particularly important for adolescents and young adults for whom sexuality and relationships are prominent concerns, whereas thinking about having children may not be of current concern. Oncology social workers and psychologists can assist in a general way, however where specific knowledge of fertility preservation options is required a referral can be made to an infertility counselor. All assisted reproduction treatment clinics have infertility counseling support available.
- Crawshaw MA, Glaser AW, Hale JP, Sloper P. Male and female experiences of having fertility matters raised alongside a cancer diagnosis during the teenage and young adult years. Eur J Cancer Care (Engl) 2009 Jul;18(4):381-90 Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/19594609.
- Rosen A, Rodriguez-Wallberg KA, Rosenzweig L. Psychosocial distress in young cancer survivors. Semin Oncol Nurs 2009 Nov;25(4):268-77 Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/19879433.
- Lee SJ, Schover LR, Partridge AH, Patrizio P, Wallace WH, Hagerty K, et al. American Society of Clinical Oncology recommendations on fertility preservation in cancer patients. J Clin Oncol 2006 Jun 20;24(18):2917-31 Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/16651642.
- Achille MA, Rosberger Z, Robitaille R, Lebel S, Gouin JP, Bultz BD, et al. Facilitators and obstacles to sperm banking in young men receiving gonadotoxic chemotherapy for cancer: the perspective of survivors and health care professionals. Hum Reprod 2006 Dec;21(12):3206-16 Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/16887922.
- Carpentier MY, Fortenberry JD. Romantic and sexual relationships, body image, and fertility in adolescent and young adult testicular cancer survivors: a review of the literature. J Adolesc Health 2010 Aug;47(2):115-25 Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/20638003.
- Oosterhuis BE, Goodwin T, Kiernan M, Hudson MM, Dahl GV. Concerns about infertility risks among pediatric oncology patients and their parents. Pediatr Blood Cancer 2008 Jan;50(1):85-9 Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/17514741.
- Peate M, Meiser B, Hickey M, Friedlander M. The fertility-related concerns, needs and preferences of younger women with breast cancer: a systematic review. Breast Cancer Res Treat 2009 Jul;116(2):215-23 Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/19390962.
- Quinn GP, Vadaparampil ST, Fertility Preservation Research Group. Fertility preservation and adolescent/young adult cancer patients: physician communication challenges. J Adolesc Health 2009 Apr;44(4):394-400 Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/19306799.