Evaluation of quality of oncofertility care in young female cancer patients

In the Netherlands around 2600 female adolescents and young adults (AYA, 18-40
years) are yearly diagnosed with cancer. Advancements in early detection and
treatment of cancer lead to higher rates of cancer survivorship. Therefore,
attention should not only be paid to survival but also to the late side effects
of cancer treatment and long-term quality of life issues. One important
undesirable side effect of cancer treatment in these young women is the
potential loss of fertility (risk varies from low <20% to high >80%). The
optimal care for these women, as recommended in evidence based guidelines,
starts with information provision by her oncological caregiver, then, if
desired, referral to and counseling by a fertility specialist, and ends with
decision-making whether she wants to preserve her fertility or not.
Providing information to women in the reproductive age newly diagnosed with
cancer on both the risk of infertility due to gonadotoxic treatment as the
fertility preservation options affects quality of life positively, reduces
long-term regret and reduces concerns regarding fertility. Unfortunately,
studies have shown that despite several guidelines and recommendations on
fertility preservation not all patients receive information on their
infertility risks and options to preserve fertility. The referral process to a
fertility specialist is often inadequate as well, illustrating a need for
better guideline adherence and improvement of oncofertility care. Indeed, for
women with unmet informational needs on fertility preservation options before
the start of their oncological treatment, the threat of infertility can lead to
long-term distress and adversely affects quality of life.

We aim to get insight in the actual quality of oncofertility care in young
females with cancer. With this insight we can identify barriers and develop a
strategy to improve quality of oncofertility care and thereby quality of life
for young female cancer survivors.

A retrospective cohort study on 2016 and 2017.
Duration of study: 5 months

Methods:
Actual quality of oncofertility care in young women with cancer will be
measures in four hospitals: Radboudumc (Nijmegen), het Amsterdam UMC, het
EramusMC, het Maastricht UMC, Leiden UMC, Canisius Wilhelmina Hospital
(Nijmegen), Rijnstate Hospital (Arnhem) and Jeroen Bosch Hospital (Den Bosch).
Quality of care will be measured in four domains of oncofertility care, namely
risk communication by oncological caregiver, referral to the gynaecologist,
counseling by the gynaecologist and the decision-making by the patient.
Patients who are diagnosed in 2016 or 2017 with cancer will be identified by
the IKNL (dutch cancer registration) after permission of their oncological
caregiver. De oncological caregiver will further select the patients based on
the in- and exclusion criteria and they will assess if the patiënt is
emotionally and physically able to receive the questionnaire. If the
oncological caregiver doubts, the patiënt will not be invited.
Identified patients will receive a participation letter from their oncological
caregiver together with the information letter and informed consent form.
If the patient sents her informed consent to the researcher, they will be sent
a questionnaire. After 3 weeks patients will receive one reminder when they did
not return the questionnaire.

When we identified the actual quality of oncofertility care we have insight
into the barriers. Hereafter we will develop an improvement strategy that will
focus on as well patients, as caregivers (doctors, specialized nurses, nurses)
as the organization.

Research questions:
1. What is the actual quality of oncofertility care in information provision,
referral, counseling and decision-making?
2. Which improvement strategy can be developed to improve the quality of
oncofertility care?

Possible advantage: A better quality of oncofertility care for future patients.
Risks: There are no risks in participation in this study.
Burden: Women of reproductive age who were diagnosed with cancer in 2016 or
2017 will be asked for filling in one questionaire which will take 30 minutes
of their time. The expected burden for women participating in this study will
be not physical, however a psychological burden can be experienced by filling
in the questionnaires, especially if they feel/realize they did not get
(enough) information about fertility preservation or experienced decisional
conflict. We hope to minimize this burden by telling that participation is
voluntary and that a woman can decide to stop with the study without
consequences. Furthermore, psychological support will be offered when women
experience a psychological burden.