Four primary findings emerge from this study. First, FT patients felt that not all dimensions of PCC were implemented equally. While it seemed that the FT patients in the current study had high assessments of r the professional abilities of the providers treating them (which included their communication skills and professional competence), and the organization of the treatment, they had low assessments of the providers’ performance in providing them with the emotional support they felt they needed.
Although one might hypothesize that patients’ experience in regard to PCC in FT would differ between countries, it seems that our findings regarding Israeli FT patients are consistent with those reported regarding FT patients in other countries [24, 30]. In a recent international comparison of PCC dimensions scores, which included New Zealand, the Netherlands, Slovakia, Portugal, Iran and Slovenia, communication skills and professional competence were scored the highest, while in most countries continuity and transition in treatment received the lowest score [31]. This might be partially explained by the high appreciation patients, specifically in Israel but in other countries as well, have of their providers. This may be especially true in FT.
The second main finding was that providers underestimate FT patients’ need for certain dimensions of PCC, as can be reflected in the gaps between the FT patients and providers scores in these three PCC dimensions: information and explanations, respect for values and needs and emotional support. Most importantly, these gaps indicate a disagreement between FT patients and providers regarding the degree to which these dimensions were implemented. Clearly, FT patients’ perception of the care they received, on the one hand, and the providers’ perception of the care that they provide, on the other, do not always conjoin in fundamental dimensions of PCC.
The third principal finding was that there were substantial differences among IVF units in their scores on the various dimensions of PCC. The healthcare system in Israel, including FT, is required to adhere to all standards regarding patient experience and PCC, including, for example, addressing patients’ emotional needs, and patients’ involvement in care [32]. Given that, the findings regarding the differences across units between FT patients and provider scores, which were more prominent in the provision of emotional support, are surprising. We have no ready explanation for the FT patient-provider differences in the perception of emotional support between IVF units. This finding was not expected and therefore requires confirmation. It is worth mentioning that the Ministry of Health in Israel is currently monitoring IVF units, and examines several components related to PCC and emotional support, such as the standard staffing of social workers and psychologists in the units, providing information and explanations, and signing an informed consent form before treatment. Linking the abovementioned data with findings of PCC surveys, such as the current study, might shed light on some of the intervening factors related to patient experience and PCC in FT.
The last main finding was the prominent patient-provider gap concerning emotional support. Not only did FT patients give emotional support the lowest score among the various PCC dimension, while providers scored it the highest, but of all dimensions, emotional support captured the largest gap between patients and providers in all IVF units. One possible explanation might be that providers assume they manage to fulfill their patients’ need for certain dimensions of PCC, while their patients do not feel so. Another possible explanation might be that providers do not necessarily think it is part of their duty to address patients’ emotional needs. In a study examining attitudes of physicians in fertility clinics in 15 countries regarding the emotional needs of their patients, less than half (45%) thought that being able to address the emotional needs of patients was necessary, and 72% reported needing improvement in their ability to identify the needs of patients for emotional support [33]. Moreover, in a recent cross-sectional exploratory study of fertility physicians, the authors found that although the majority of providers believed emotional conditions negatively impact pregnancy success, most of them did not screen patients for depression or anxiety [34].
In FT and other medical fields as well, it seems that providers fail in recognizing the emotional needs of their patients. In a study on cancer patients’ emotional distress, the oncologists recognized the presence of severe distress in only about a third of the severely distressed patients, and the oncologists’ recommendations for supportive counselling did not correlate with patient distress [35]. Indeed, The European Society of Human Reproduction and Embryology (ESHRE) published a guideline for routine evidence-based emotional support in fertility treatment for all clinic staff (physicians, nurses, midwifes, counsellors, social workers, psychologists, embryologists and administrative personnel), which include 120 recommendations related to 12 key question. The guidelines specify how to enable couples, their families and their providers to optimize FT and manage the psychological and social implications of infertility and its treatment on optimal management of routine emotional care by all provider. For example the guidelines highlight the importance of being aware that patients′ emotional stress fluctuates during a treatment cycle, with peaks at the oocyte retrieval, the embryo transfer and the waiting period before the pregnancy test [36]. Having said that, it is important to note it was not in the scope of the current study to attempt to understand the reasons for the emotional distress of women in FT, for which the providers themselves may not be solely responsible, but to focus on PCC due to its beneficial association with patient wellbeing.
The observed differences and gaps between what FT patients feel about their care and what providers assume they provide, particularly the gap in emotional support, requires special attention and identifies the need for specific feedback for providers regarding how their professional performance meets the needs of FT patients. Attempts at improving PCC begin by giving appropriate feedback to providers [37] and gaining an insight into the discrepancies between patient and providers perceptions [6]. Using PCC feedback tool, which is based on the patient perspective, is critical to identifying areas of care where improvements are needed, since patients are placed in the best position to decide whether care is consistent with their values, preferences and needs. They also know best whether they received the level of information they desire, and whether they understood the information and can recall it [38].
Accordingly, in the current study each unit participating was presented with a personal feedback report, containing the scores of the patient in that specific unit on the 10 dimensions of PCC, and a comparison to the other units. Thus, providers and unit managers could examine the scores on each dimension and each element, and see the focal points required for change, and what should be preserved in their practice, in order to improve the PCC of the patient being treated in their unit.
In line with the above, the four elements comprising the emotional support dimension, that should be addressed are: being informed about the psychological impact of treatment; giving the opportunity to consult a counselor who is familiar with problems connected with treatment; receiving information on support group for FT patients; and ensuring that a partner and/or family members are given an information brochure. It is important to examine which effective interventions can be developed in order to improve the PCC in fertility treatment, since even extensive interventions involving providers in fertility clinics [39], or tailored expectant management involving patient and providers in fertility clinics [40] don’t always have the desired impact of improving PCC. In a review describing the optimal IVF treatment in 2020, the authors argue that patient emotional vulnerability can be tackled by screening for emotional distress before treatment unset, referrals for emotional support and elimination of barriers to acceptance of such support, and implementing a routine care flowchart that identifies the specific stages of treatment when emotional support should be provided [41].