3.5 The needs of national and international patients

Introduction

A growing number of patients travel abroad to undergo fertility treatments – a worldwide phenomenon called Cross-Border Reproductive Care (CBRC).

A systematic review (1) shows that the main reasons for choosing CBRC are related to regulatory, ethical or legal restrictions in the country of origin, and that some additional factors include a lack of expertise in the home country, the cost of treatment, the lack of publicly funded treatments and excessive waiting times.

CBRC can therefore be broadly explained as follows:

Specificities of international patients

Clinical evidence

In the absence of specific studies or evidence regarding the psychological and emotional impact of undergoing ART abroad, the Patient Care Guidance Development Group based their recommendations on different studies not specific to CBRC, but whose conclusions are particularly relevant for international patients. Those conclusions relate to:

1. The impact of organisational and logistic problems on fertility patients:

A review of the reasons for discontinuing fertility treatments (2) shows that organisational problems (14%) are the 5th reason why patients discontinue treatment following an initial failed ART cycle after financial issues (50%), the psychological (22%) and physical (17%) burden of treatment, and clinic-related reasons (17%).

A review evaluating patients’ fertility care experiences (3) identified that some of the main features of clinics deemed important by patients are related to practical and organisational aspects: the waiting time during treatment, the frequency of appointments, the distance to the clinic, the duration of the consultation and the waiting time for the first appointment

.Another study (4) showed that the majority (62%) of fertility patients with paid work reported IVF-related absence from work averaging 23 h compared to 9.5 h for non-IVF-related absence.

• Relevance for international patients: the logistic practical and organisational aspects are particularly critical for international patients who face more complex organisation and logistics procedures, extra costs and considerable absence from work due to the need to travel for treatment.

2. The emotional and social needs of fertility patients, especially during the oocyte retrieval to transfer stage:

Studies show that emotional and cognitive needs are related to the uncertainty surrounding treatment outcome, and tend to peak just before oocyte retrieval, embryo transfer and the pregnancy test (5). Women perceived less social support during the retrieval to transfer stage, but more support during the waiting stage of the IVF cycle than during equivalent stages in the normal menstrual cycle (6).

• Relevance for international patients: during 2 of these 3 critical stages (oocyte retrieval and embryo transfer), international patients are not in their home country and can therefore face additional stress and emotional distress coupled with less social support (distance from home and close circle).

3. The importance of clear, fluid communication and of providing transparent and understandable written information about the treatment.

Various studies (3) (5) (6) have assessed and confirmed the importance of clear, customised information, communication, and education for fertility patients to help dispel anxiety and stress specifically related to patient infertility. The Van Empel study (5), in particular, stated that patients were willing (hypothetically) to sacrifice 9.6% in pregnancy rate for receiving clear, customised information.

• Relevance for international patients: the physical distance and language difference can make it more difficult to guarantee access to and clear understanding of information, communication and education.

Additional stress and anxiety factors for international patients

In addition to the emotional distress and psychological burden related to ART treatments in general, undergoing ART treatments in a clinic in a foreign country inevitably comes with additional stress and anxiety factors related to:

Recommendations for improving the care of international patients

Specific needs of international patients

Fertility clinic staff should take into account that:

• International patients are likely to face additional stress before and at the beginning of ART (stimulation phase) because of the distance, additional costs, lack of knowledge of the country of destination and the complexity of organising ART abroad,
• International patients may experience more emotional distress and anxiety, especially during the critical phases of oocyte retrieval and embryo transfer, as they are in an unknown environment at key points in the cycle when with they have less emotional and social support from their close circle,
• Consequently, international patients often place greater demands on their fertility clinic in terms of communication and emotional support from staff.
• International patients therefore have specific needs that fertility clinic staff can address by guaranteeing:
  • Easy access to regular, clear and understandable information, in their own language, before, during and after the treatment,
  • A rapid response to patients’ questions and demands,
  • Transparency regarding the different options available and the budget,
  • Additional attention to patient care: staff showing empathy and understanding, being sensitive and trustworthy, and focusing on the emotional impact of ART for international patients,
  • Emotional support in the patient’s language from current and former patients, and from clinic staff or collaborators (psychologist, counsellor, coach)

Recommendations

Resources

1. A systematic review published in 2011, called “Cross-border reproductive care: a review of the literature” ( Hudson, N., Culley, L., Blyth, E., Norton, W., Rapport, F., Pacey. A.) included 18 empirical research studies and 36 debate papers.
2. “Why do patients discontinue fertility treatment? A systematic review of reasons and predictors of discontinuation in fertility treatment” (Gameiro, S., Boivin, J., Peronace, L., Verhaak, C.M., Hum Reprod Update 2012; 18: 652-669).
3. A systematic review published in 2010 and including 51 studies from 14 countries, evaluating patients’ experiences with fertility care (Dancet, et al., 2010).
4. A prospective cohort study which followed up 380 women with a paid job while they underwent a standard IVF cycle (Bouwmans, et al., 2008).
5. Van Empel et al. collected data from 925 individuals undergoing any stage of fertility treatment at eight ART clinics (van Empel, et al., 2011).
6. A prospective cohort study comparing the daily reactions of 20 women during an IVF cycle with their reactions during a regular menstrual cycle (Boivin and Takefman, 1996).
7. Pook and Krause conducted an RCT to assess an intervention based on an information leaflet for infertile men starting infertility diagnosis (Pook and Krause, 2005).