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
Inclusion Criteria7
- Patients who consent to participate in the research study and are enrolled on the Australasian Oncofertility Registry
- Parents or carers who have a child with cancer enrolled on the Australasian Oncofertility Registry
- Aged matched controls aged 15-25 years who consent to participate on the research study
- For inclusion in this study, patients will be aged 15-25 years, who have agreed to have their data stored on the Australasian Oncofertility Registry and have ticked on their consent form that they wish to participate in future studies and are happy to be contacted to participate on the FUTuRE Fertility Psychological Health Research study. Patients eligible to participate will be enrolled on the registry from between 0-90 days from their cancer diagnosis. Partners/parents/carers of a participant in the cancer group will also be contacted separately to say that their child/partner has agreed to participate in this study and will offer them the opportunity at this stage, via letter to the parent/partner/carer, by the FUTuRE Fertility Clinical Psychologist, to participate in this study.
- Controls aged 15-25 years will be recruited via social media as well as from participating fertility sites enrolled on the Australasian Oncofertility Registry, to which ethics approval has been received for this study. The controls maybe visiting their fertility specialist for a number of different medical conditions such as: ovulation disorders (polycystic ovaries), uterine or cervical abnormalities, including problems with the opening of the cervix or cervical mucus, or abnormalities in the shape or cavity of the uterus (uterine fibroids), endometriosis, primary ovarian insufficiency, thyroid problems, abnormal sperm production or function due to various problems, such as undescended testicles, prior infections , trauma or prior surgeries on the testicles,
- Both male and female non-cancer consenting participants aged 15-25 years will be matched by 5 year age-periods and gender to consenting cancer survivors who are actively trying to have a family.
- Once a patient, parent or partner, matched control consents to participate, they will be contacted by either the study psychologist or a member of the research team who will explain the research study in detail in order to verify the participant's willingness to participate. An interpreter will be made available if required by the hospital, at a cost incurred by the FUTuRE Fertility research steering group. It will also be explained to the participant that if at any stage of the research study (questionnaire/telephone interview) that a participant decides to decline or stop participation with either the questionnaire or telephone interview, they will be able to do so immediately without any repercussions.
Exclusion Criteria3
- Patients who do not consent to participate in the research study
- Parents or carers who do not have a child with cancer enrolled on the Australasian Oncofertility Registry
- Aged matched controls aged 15-25 years who do not consent to participate on the research study who have or have previously had a cancer
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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