Abstract
The notion that health professionals should try to understand illness and its treatments from the patients’ perspective instead of solely relying on scientific knowledge first emerged in the nursing profession during the 1960s. It was only in the new millennium that this perspective came into use within infertility and assisted reproductive technology (ART), when the argument was made that patient centeredness was as important in defining high-quality ART as other treatment dimensions, such as effectiveness, efficiency, or safety.
The notion that health professionals should try to understand illness and its treatments from the patients’ perspective instead of solely relying on scientific knowledge first emerged in the nursing profession during the 1960s[1]. It was only in the new millennium that this perspective came into use within infertility and assisted reproductive technology (ART), when the argument was made that patient centeredness was as important in defining high-quality ART as other treatment dimensions, such as effectiveness, efficiency, or safety[2]. Interest in understanding patients’ views and experiences of treatment, as well as their expressed needs and preferences, has since been increasing steadily. Currently there is an understanding that health practitioners need to combine the best available evidence with patients’ preferences and needs in all their clinical decision-making.
Patient-centered care (PCC) is care that respects and responds to individual patient preferences, needs, and values, and ensures that patient values guide all clinical decisions. In the last two decades, there has been great progress in working towards a more centered ART. First, research identified 11 PCC dimensions important to patients: information provision, competence of clinic and staff, coordination and integration, access to care, continuity and transition, and physical comfort are considered to be system factors (of the clinic), while respect, attitude of and relationship with staff, communication, patient involvement, and emotional support are considered to be human factors (of the staff)[3,4]. Data about which specific aspects within each dimension are more important, for which patient groups, during which stages of treatment, and at which clinical settings (e.g., geographical variation) are starting to appear but are still largely lacking. Second, infertility-specific measures to assess patients’ experiences with care were developed, such as the patient-centeredness questionnaire (PCQ)-Infertility (see Table 12.2), which has been validated in different languages and can be modified to assess staff views on the care they provide. Third, probing into the relative value patients and staff attribute to PCC showed that staff underestimate the importance of PCC and that patients are willing to pay more and trade pregnancy rates to receive better PCC. Research also showed that patients and staff evaluated differently the quality of care provided at their clinics[5]. In the future, it will be important to better understand the underlying staff attitudes that explain this discrepancy, as well as the barriers that make it hard for clinics and staff to improve PCC. Fourth, research has also shown that some aspects of PCC are associated with patient well-being and quality of life[6,7], although so far there is only promising research supporting the claim that patients who receive better PCC are less likely to discontinue treatment[8,9]. Future steps must address the direction of causality in these relationships. Fifth, further conceptual development led to the distinction between PCC and patient-centered treatment (PCT). PCT refers to the valuing of the patient role in treatment-shared decision-making[10] and includes the dimensions of burden, time, effectiveness, potential risks, financial costs, and genetic parentage. Finally, a few complex interventions to increase PCC were evaluated but showed little promise so far[11]. Simultaneously, interventions focusing on single dimensions of PCC showed that improvements can be achieved[12]. It may be more feasible to try to create incremental change by focusing on one aspect of PCC at the time than to simultaneously address all aspects.
This chapter takes the view that it would also be useful to think about PCC in terms of what it aims to achieve. This view could provide clarity in terms of prioritizing change in care, understanding connections between the different PCC dimensions and why these are valued by patients, and designing future studies and interventions, including testing of specific hypotheses. We argue that PCC aims to achieve three important goals: (1) centeredness: respecting patients and their stated preferences, needs, and values, (2) engagement: empowering patients to share the management of infertility and its treatment with the fertility team, and (3) personalization: adapting care and treatment services to patients. Figure 12.1 illustrates these three goals and the PCC dimensions more closely related with each goal.
Figure 12.1 Three important aims (in bold) of patient-centered care (PCC) and their underlying dimensions. The arrows indicate the interdependence between the three PCC aims and their underlying dimensions. The dimension competence of clinic and staff is a requisite to all PCC provision.
With a view to what should be considered optimal PCC in ART, this review puts forward a set of recommendations for researchers and health practitioners interested in working toward these three PCC goals. Table 12.1 presents a summary of the formulated recommendations. Table 12.2 lists available resources that may be useful for staff and clinics interested in following our recommendations.
| Goal of patient-centered care | Recommendations |
|---|---|
|
|
| |
|
| Increase awareness of patients’ preferences and train staff in centeredness |
| SPIKES protocol to deliver bad news: Baile WF, Buckman R, Lenzi R, Glober G, Beale EA, Kudelka AP. SPIKES – A Six-Step Protocol for Delivering Bad News: Application to the Patient with Cancer. Oncologist. 2000; 5(4): 302–11. |
| Provide information |
|
| Promote empathetic care |
Graphic novels:
Patient co-produced booklets based on the DrawingOut method:
|
| Promote patient self-care |
Patient questionnaires:
|
| Promote and develop tools for shared decision-making |
|
| Involve patients in research and other initiatives to improve quality of care |
Guidance to involve patients in research:
|
| Promote patient-positive adjustment to unsuccessful fertility treatment |
|
Centeredness: Respecting Patients and Their Stated Preferences, Needs, and Values
Considerable research has been done to explore patients’ needs and preferences regarding the way they are taken care of at clinics and their interactions with staff. Two reviews highlight the following aspects as being the most important to patients[3,13]:
Being cared for by respectful, sensitive, and trustworthy staff members. This includes all staff members at fertility clinics, including office staff and, in particular, physicians.
Positive attitude (e.g., being friendly) of, and interactions with, all staff members, and physicians in particular.
Responsiveness and sensitivity of staff toward the emotional impact of infertility and its treatment, as well as toward distinct needs related with patients’ background and medical history.
Provision of emotional support before, during, and after treatment, in particular by physicians and nurses and during the two-week waiting period for the pregnancy test.
Opportunity for contact with prior patients, and access to patient support groups and to specialized psychosocial care (counseling, therapy).
Aspects related to the attitude of and relationship with staff are considered to be of higher priority than receiving emotional support[4].
Recommendations
Increase Awareness of Patients’ Preferences and Train Staff in Centeredness
Centeredness is an important aspect for patients. Patients report that they are willing to sacrifice 10% of the pregnancy rate if that means being cared for by a friendly and interested physician (as compared with unfriendly, uninterested) and that lack of PCC is an important driver for them to stop treatment or continue it at a different clinic[14,15]. Staff attitudes seem to be particularly important for women, patients with lower education, and patients undergoing treatment for a longer time[14].
Poor interactions between ART professionals and patients are commonly reported in the literature[3,16] and the consequences include dissatisfaction with care and more medical malpractice suits. This may happen because staff are not fully aware of how important their attitude to patients is, lack knowledge about how to improve the quality of their interactions, or are highly time pressured by other job demands. It may also be that some patients’ demands are too difficult to satisfy (e.g., immediate feedback to emails or calls). Whatever the reality is, research shows that staff are open to change and think that evaluating current practices, discussing these within the team, and receiving feedback and patient input would help them in this endeavor[14,17].
Multiple studies showed that interpersonal and communication skills can be learned and retained long term, and result in higher patient satisfaction[12] and benefits for staff themselves, such as higher perceived self-confidence and reduced burnout. A meta-analysis of 13 RCTs in other health conditions where the patient–staff relationship was manipulated showed that this results in a small but significant impact on patient subjective health outcomes (e.g., pain, quality of life, anxiety). These data show that there are evidence-based interventions available for clinics to invest in training their staff in centeredness as these should translate into better patient subjective well-being and satisfaction with care. These should be incorporated into all staff’s continuous professional development. Research should also focus on conducting further efficacy testing of these interventions within the specific context of infertility and ART.
Staff’s responsiveness and sensitivity is of particular importance when patients receive bad news, which is a common occurrence in infertility and ART, for instance, receiving an infertility diagnosis or receiving news of stimulation, oocyte pickup, fertilization, and treatment failure. Thirty-seven percent and seventeen percent of patients experience unexpected emotional and physical reactions, respectively, when being informed about treatment outcome (e.g., not being able to sleep or stop crying). Those with a negative result are more likely to think that staff had better ways to communicate the news and help them react to the result. This is also one of the biggest perceived challenges of working in ART[17]. In sum, both staff and patients can benefit from staff improving their skills on this topic. One way to achieve this is by using a predefined protocol to share bad news. Indeed, it is known from other areas of health that, when physicians know how to proceed in these contexts, both staff and patients experience less stress. A recent study showed that ART professionals think a protocol to share bad news can be practical and useful[18]. Following a sensitive protocol may also help prevent extremely negative emotional reactions from patients, which are highly stressful and time consuming for staff. Another approach that some infertility staff welcome is to attend training workshops on how to share bad news[17]. Table 12.2 presents a well-known protocol to share bad news.
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