Fertility policies have long prioritised patient-centredness in care, defined as providing care that is respectful of and responsive to individual patient preferences, needs, and values and ensuring that patient values guide all clinical decisions. Despite this, patient-centredness has often been referred to as a “neglected outcome” in fertility care..
Decisions regarding fertility testing and treatment are often complex, particularly because they involve multiple stakeholders who may bear different costs and have differing preferences. Patients experiencing infertility are required to weigh various medical, emotional, and financial factors when navigating their care. In this context, receiving care that is genuinely patient-centred—sensitive to individual needs and values—is not just beneficial, but essential. Patient-centred care remains a core pillar of quality healthcare and is particularly meaningful for those navigating infertility.
This study was designed to evaluate the patient-centredness of fertility care by inviting patients to complete an anonymous survey, which included the validated Patient-Centred Questionnaire-Infertility (PCQ-Infertility). This standardised instrument assesses eight key dimensions of quality in care: organisation accessibility, information provision, communication, patient involvement, respect for patients’ values, continuity and transition, staff competence and organisation. In addition to the patient survey, a separate questionnaire was distributed to fertility clinics. This allowed clinic staff to self-assess their performance in relation to patient-centredness and offered insight into the clinic’s perspective on delivering patient-focused care.
Participants were asked conditional questions based on their personal experiences during treatment. The survey focused on seven key areas of the patient experience: Accessibility, Information, Communication, Patient Involvement, Patient Appreciation, Continuity of Care and Professionalism.
ABSTRACT SUMMARY
Title: Experiences with patient-centred care during fertility treatment among patients with and without children: a multi-country cross-sectional survey.
Objectives: It is well-recognised that patient-centred routine care (i.e., that respects and responds to patient’s preferences, values and needs) is a core aspect when measuring high-quality care at clinics. Many benefits were identified, such as patients reporting more positive care experiences, improved well-being and mental health, higher treatment compliance, and higher cost-effective care provision. Evidence shows fertility patients who have had a child are likely to have more positive views of the quality of healthcare provided than those who do not. However, to our knowledge, parental status in patients’ experiences with patient-centred care has not yet been evaluated.
Methods: Cross-sectional, anonymous, self-reported online survey (EN) in Typeform was disseminated via a European Professional Fertility Society website, email, and social media (Sept-Nov 2024). Eligibility criteria included being aged 18 or older and having had fertility treatment in the last three years. Three hundred fifty-one patients consented and completed the survey (93.1% completion rate). Survey included questions on participants’ background and fertility history, and the PCQ-Infertility revised (van der Kolk et al. 2023) which consists of 39 items assessing patients’ perceptions across seven care domains: ‘Accessibility’, ‘Information’, ‘Communication’, ‘Patient Involvement’, ‘Respect for patient’s values’, ‘Continuity and transition’, and ‘Competence’. Values range from 0-4, with higher scores indicating higher satisfaction. Multivariate analysis of variance (MANOVA) was performed to evaluate differences in these care domains between patients with and without children.
Results: Participants were mostly residents of Europe (67%) and North America (22%), in particular, the UK, Ireland and the US, and most had a university education (90%). Patients were having or had their most recent fertility treatment, on average, at 38 years old (SD=4.77[22-49]), in the private (79%), public (14%) or both (7%) sectors. Most reported using IVF/ICSI (81%), and around one-fifth reported using donation (21%). Around one-third had biological children (34%), with 67% reporting children resulted from treatment. Overall, experiences of fertility care were neutral to positive, with perceived competence of the clinic team (M=2.76, SD=0.92, interval:[0-4]), patients involvement in the treatment process (M=2.72, SD=0.94, interval:[0-4]), provision of clear and understandable information (M=2.71, SD=0.90, interval:0.43-4]), accessibility to the clinic (M=2.58, SD=1.09, interval:[0-4]) and communication with the medical team (M=2.55, SD=1.00, interval:[0-4]) being higher rated, and continuity of care (M=2.34, SD=1.10, interval:[0-4]) and respect for patients’ values (M=2.13, SD=0.96, interval:[0.14- 4]) being lower rated. Multivariate analysis showed no significant differences in mean scores on each dimension of patient-centredness care between those who had and did not have children (F=0.971, p=0.452, p2=0.025).