Fertility Understanding Through Registry and Evaluation (FUTuRE Fertility): exploring the fertility-related quality of life and psychological distress in young people with cancer, their parents and aged matched controls.
To explore the psychosocial function, fertility related quality of life, and the meaning of parenthood in young people with and without cancer as well as parents of cancer patients: A prospective study.
The Prince of Wales Foundation Grant
150 participants
Oct 28, 2015
Observational
Conditions
Summary
The primary purpose of this study is to examine the fertility-related quality of life and psychological distress in young cancer patients and their parents/carers compared to individuals of the same age receiving a fertility consultation for fertility problems which are not related to cancer. Who is it for? You may be eligible to participate in this study if you are aged 15-25 and have been diagnosed with any cancer in the previous [0-90 days from diagnosis], or are receiving a fertility consultation for fertility problems which are not related to cancer. Parents/carers/partners of enrolled cancer patients may also participate. Study details: Cancer patients and non-cancer related fertility problem groups will complete one questionnaire at enrolment into the study, and then the same questionnaire at 12 months and three years’ post-treatment. Participants will also complete two sixty-minute semi-structured telephone calls at the enrolment, 12 months and 3 year time points. Parents/partners of cancer patients will complete one questionnaire and two-sixty minute semi-structured telephone interviews at three different time points which will include: at the patient’s cancer diagnosis, 12 months and three years post-treatment. All participants will be asked about their quality of life and psychological distress related to their infertility or their child's/partner’s infertility. Researchers will use the data collected from questionnaires and interviews to investigate the short and long term effects on mental health, quality of life and meaning of parenthood in these young adults. It is hoped that the findings of this study will inform healthcare providers of the psychological effects of cancer-related infertility in young people.
Eligibility
Plain Language Summary
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Interventions
Cancer survivors who are actively trying to have a baby or who have been referred for fertility preservation (FP)/Assisted Reproductive Technologies (ART) will be recruited from the Australasian Oncofertility Registry (AOFR). Cancer patients will be asked to complete one questionnaire and two sixty-minute semi-structured telephone interviews with the FUTuRE Fertility study clinical psychologist, at three different time points (diagnosis, 12 months and 3 years post treatment). The questionnaire will be used to collect information on cancer diagnosis and treatment, time from cancer treatment, fertility preservation and treatment before or after cancer treatment as well as collecting information on the psychological distress experienced by patients who are rendered infertile as a direct result of their cancer treatment. The patients will be matched to non-cancer control participants by age group and sex who have experienced infertility for other reasons unrelated to cancer. Parents of cancer patients will also be asked to complete one questionnaire a three different time points (diagnosis, 12 months and 3 years post treatment) as well as two sixty-minute semi-structured telephone interviews with the FUTuRE Fertility Study Clinical Psychologist to: (i) determine the challenges of fertility preservation that parents of cancer patients aged 15-25 years’ experience; (ii) compare the differences in fertility related quality of life that parents of cancer patients aged 15-25 years whom have had a fertility preservation consultation and possible fertility preservation procedures experience compared to those parents whose child either did not have an opportunity for consultation or fertility preservation procedures; (iii) explore the fertility related psychological distress faced by parents of cancer patients aged 15-25 year old at different time points.
Locations(1)
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ACTRN12615001192572