Abstract


OBJECTIVE: Survival rates for childhood cancer have dramatically increased due to advances in therapy, however, infertility often results from treatment. Experimental OTC may help prepubertal females and young women preserve their fertility. The purpose of this study was to explore the decision-making influences, perceived level of control over decision-making, and mood-states of patients and parents who were offered OTC prior to gonadotoxic therapy.
DESIGN: Retrospective cohort. view more

OBJECTIVE: Survival rates for childhood cancer have dramatically increased due to advances in therapy, however, infertility often results from treatment. Experimental OTC may help prepubertal females and young women preserve their fertility. The purpose of this study was to explore the decision-making influences, perceived level of control over decision-making, and mood-states of patients and parents who were offered OTC prior to gonadotoxic therapy.
DESIGN: Retrospective cohort.
MATERIALS AND METHODS: Parents of patients planning to undergo gonadotoxic therapy who were offered OTC prior to therapy were asked to complete questionnaires regardless of whether they elected OTC. Patients who were at least 12 years old were also asked to complete questionnaires. Two validated instruments were also used: The Decision-Making Control Instrument (DCMI) as a measure of the strength of control in decision-making and the Profile of Mood States (POMS) to describe mood states when faced with their decision. The factors that influenced decision-making were compared using Student’s t test, and the scores of DCMI and POMS were compared using the Wilcoxon rank sum test.
RESULTS: Thirty-six parents and 15 patients who underwent OTC completed questionnaires. Five parents who declined OTC also completed questionnaires. Most accepters thought OTC was a good idea (72.2% parents; 73.3% patients) and that in future, science would enable the use of cryopreserved ovarian tissue to restore fertility (77.8% parents; 60% patients). The desire for genetically-related children (86.7%) and prevention of the stress of infertility (66.7%) drove parents’ decisions (Table 1). The desire for genetically-related children also drove patients’ decisions (93.3%), but only 26.7% considered the stress of infertility. All refusers thought OTC was a somewhat good idea and desired for their daughters to have genetically-related children, but risks of the biopsy and desire not to complicate treatment (40% and 66.7%, respectively) drove their decisions. All respondents felt in control of their decision and levels of mood disturbance were similar.
CONCLUSIONS: OTC is a promising option for prepubertal females and young women facing imminent gonadotoxic therapy. Though the decision to undergo OTC is difficult and often urgent, this study suggests that parents and patients can carefully weigh the risks and benefits and make an informed decision during these critical times. It is reasonable to offer OTC to prepubertal females and young women prior to gonadotoxic therapy.

Parental Decision-Making Influences

Decision-making Influences

A lot (%)

A moderate amount (%)

A little bit (%)

Not at all (%)


Religious beliefs

11.1

5.6 5.6 77.8

Family opinion

27.8 13.9 25.0 33.3

Desire for genetically related children

88.9 2.8 5.6 2.8

Prevent psychological distress of infertility

66.7 19.4 11.1 2.8

Moral objections to assisted reproductive technology

8.3 8.3 8.3 75.0

Financial implications

13.9 0 8.3 75.0

Limited time to decide

11.1 13.9 11.1 63.9

Lack of knowledge

5.6 5.6 16.7 72.2

Desire to not complicate treatment

19.4 8.3 30.6 41.7

Risks of the procedure

2.9 22.9 20.0 54.3

Experimental nature of procedure

8.3 13.9 25.0 52.8
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