Psychology Guideline - Long Version With Supp Data

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Human Reproduction, Vol.0, No.0 pp.

1 –11, 2015
doi:10.1093/humrep/dev177

ESHRE PAGES

ESHRE guideline: routine psychosocial


care in infertility and medically assisted
reproduction—a guide for fertility staff †
S. Gameiro1,*, J. Boivin 1, E. Dancet 2,3, C. de Klerk 4, M. Emery5,
C. Lewis-Jones 6, P. Thorn 7, U. Van den Broeck 2, C. Venetis 8,
C.M. Verhaak 9, T. Wischmann 10, and N. Vermeulen 11
1
Cardiff Fertility Studies Research Group, School of Psychology, Cardiff University, CF10 3AT Cardiff, UK 2Leuven University Fertility Centre,
University Hospitals Leuven, 3000 Leuven, Belgium 3Center for Reproductive Medicine, Women’s and Children’s Hospital, Academic Medical
Center, University of Amsterdam, Amsterdam 1105 AZ, The Netherlands 4Department of Psychiatry, Section Medical Psychology and
Psychotherapy, Erasmus MC University Medical Centre, Rotterdam 3000 CA, The Netherlands 5Centre for Medically Assisted Procreation—
CPMA, CH-1003 Lausanne, Switzerland 6Infertility Network UK, East Sussex TN40 1JA, UK 7Practice for Couple and Family Therapy, 64546
Moerfelden, Germany 8Women’s and Children’s Health, St George Hospital, University of New South Wales, NSW 2217 Sydney, Australia
9
Department of Psychology, Radboud University Medical Center, 6500 HB Nijmegen, The Netherlands 10Institute of Medical Psychology, Centre
for Psychosocial Medicine, Heidelberg University Hospital, 69115 Heidelberg, Germany 11European Society for Human Reproduction and
Embryology, 1852 Grimbergen, Belgium

*Correspondence address. E-mail: [email protected]

Submitted on April 21, 2015; resubmitted on April 21, 2015; accepted on June 11, 2015

study question: Based on the best available evidence in the literature, what is the optimal management of routine psychosocial care at
infertility and medically assisted reproduction (MAR) clinics?
summary answer: Using the structured methodology of the Manual for the European Society of Human Reproduction and Embryology
(ESHRE) Guideline Development, 125 recommendations were formulated that answered the 12 key questions on optimal management of routine
psychosocial care by all fertility staff.
what is already known: The 2002 ESHRE Guidelines for counselling in infertility has been a reference point for best psychosocial care
in infertility for years, but this guideline needed updating and did not focus on routine psychosocial care that can be delivered by all fertility staff.
study, design, size, duration: This guideline was produced by a group of experts in the field according to the 12-step process
described in the ESHRE Manual for Guideline Development. After scoping the guideline and listing a set of 12 key questions in PICO (Patient,
Intervention, Comparison and Outcome) format, thorough systematic searches of the literature were conducted, evidence from papers pub-
lished until April 2014 was collected, evaluated for quality and analysed. A summary of evidence was written in a reply to each of the key questions
and used as the basis for recommendations, which were defined by consensus within the guideline development group (GDG). Patient and
additional clinical input was collected during the scoping and the review phase of the guideline development.
participants/materials, setting, methods: The guideline group, comprised psychologists, two medical doctors, a midwife,
a patient representative, and a methodological expert, met three times to discuss evidence and reach consensus on the recommendations.
main results and the role of chance: The guideline provides 125 recommendations that aim at guiding fertility clinic staff in
providing optimal evidence-based routine psychosocial care to patients dealing with infertility and MAR. The guideline is written in two sections.
The first section describes patients’ preferences regarding the psychosocial care they would like to receive at clinics and how this care is associated
with their well-being. The second section of the guideline provides information about the psychosocial needs patients experience across their
treatment pathway (before, during and after treatment) and how fertility clinic staff can detect and address these. Needs refer to conditions
assumed necessary for patients to have a healthy experience of the fertility treatment. Needs can be behavioural (lifestyle, exercise, nutrition
and compliance), relational (relationship with partner if there is one, family friends and larger network, and work), emotional (well-being,
e.g. anxiety, depression, quality of life) and cognitive (treatment concerns and knowledge).


ESHRE pages content is not externally peer reviewed. The manuscript has been approved by the Executive Committee of ESHRE.

& The Author 2015. Published by Oxford University Press on behalf of the European Society of Human Reproduction and Embryology. All rights reserved.
For Permissions, please email: [email protected]
2 Gameiro et al.

limitations, reasons for caution: We identified many areas in care for which robust evidence was lacking. Gaps in evidence
were addressed by formulating good practice points, based on the expert opinion of the GDG, but it is critical for such recommendations to
be empirically validated.
wider implications of the findings: The evidence presented in this guideline shows that providing routine psychosocial care is
associated with or has potential to reduce stress and concerns about medical procedures and improve lifestyle outcomes, fertility-related knowl-
edge, patient well-being and compliance with treatment. As only 45 (36.0%) of the 125 recommendations were based on high-quality evidence,
the guideline group formulated recommendations to guide future research with the aim of increasing the body of evidence.
study funding/competing interest(s): The guideline was developed and funded by ESHRE, covering expenses associated
with the guideline meetings, with literature searches, and with the implementation of the guideline. The GDG members did not receive
payment. S.G., E.D., C.d.K., M.E., U.V.d.B., C.L.-J. and N.V. report no conflicts of interest. J.B. reports grants from Merck & Co, consulting
fees from Merck Serono S.A. and Speaker’s fees from Merck Serono S.A. P.T. reports consulting fees from the German government and
being the Chair of the German Society for Fertility Counselling. C.V. reports consulting fees from Merck Serono S.A. C.M.V. reports being
adviser in projects for Merck Serono S.A. and Ferring S.A. on patient educational material. T.W. reports speaker’s fees from Repromed,
DGPM, Breitbach, DAAG, fiore, LPTW, MSD, salary/position funding at TAB-beim-Bundestag, BZgA, and being the Vice-chair of the
German Society for Fertility Counselling.
trial registration number: NA.
Key words: guideline / psychosocial care / infertility / assisted reproduction / evidence-based

their well-being. This information is considered useful to raise staff


Introduction awareness about patient preferences for psychosocial care. Second,
The European Society of Human Reproduction and Embryology about the psychosocial needs that patients experience across their treat-
(ESHRE) guideline ‘Routine psychosocial care in infertility and medically ment pathway, and how staff can detect and address these needs. Thus,
assisted reproduction—A guide for fertility staff’ offers evidence-based the guideline describes patients’ needs, informs about risk factors for
best practice advice to all fertility clinic staff (doctors, nurses, midwifes, specific psychosocial needs and tools to detect these and lists evidence-
counsellors, social workers, psychologists, embryologists and adminis- based psychosocial interventions that can be delivered by members of
trative personnel) on how to incorporate psychosocial care in routine in- staff without specialised training in mental health care and do not
fertility care. Psychosocial care is defined as care that enables couples, require the active intervention of mental health professionals (e.g. spe-
their families and their health care providers to optimize infertility care cialist counsellors, psychologists and psychiatrists).
and manage the psychological and social implications of infertility and The guideline is organised according to a horizontal ‘time’ axis and a
its treatment (Cancer Care for the Whole Patient: Meeting Psychosocial vertical ‘needs’ axis with the aim of tailoring care to the different psycho-
Health Needs, 2008). social needs patients experience across time at different treatment
Psychosocial care is important in infertility care because most patients stages. This approach is depicted in Fig. 1. The time axis includes three
experience emotional distress during treatment (Verhaak et al., 2007a,b; stages: before, during and after treatment. The needs axis refers to con-
Knoll et al., 2009; Karatas et al., 2011), 23% discontinue prematurely ditions assumed necessary for patients to have a healthy experience of
because of the perceived burden of treatment (Brandes et al., 2009) the fertility treatment. Needs can be behavioural (i.e. lifestyle, exercise,
and one-third of patients end treatment without achieving pregnancy nutrition and compliance), relational (i.e. relationship with partner,
(Pinborg et al., 2009) and experience difficulties in adjusting to unmet family, friends and larger network, and work), emotional (i.e. anxiety, de-
parenthood goals (Verhaak et al., 2007a,b; Johansson et al., 2010; Wisch- pression, quality of life) and cognitive (i.e. treatment concerns and knowl-
mann et al., 2012; Gameiro et al., 2014). Even when a pregnancy is edge).
achieved, it is experienced with increased anxiety about the viability
and health of the foetus (Hammarberg et al., 2008). Psychosocial care
should support patients in achieving their parenthood goals and man- Methods
aging all the implications of successful or failed treatment. By offering psy- The guideline was developed according to the Manual for ESHRE Guideline
chosocial care in combination with medical care during routine practice, Development (Nelen, 2009). All details on the methodology can be found
fertility clinic staff can ensure that care is accessible for all patients and in the full version of the guideline available at www.eshre.eu/Guidelines. In
addresses their most common needs. For these reasons, psychosocial short, the guideline development group (GDG) defined 12 key questions
care should be the responsibility of all staff members that have contact structuring psychosocial care in fertility clinics. The questions were defined
with patients. in PICO format (Patient, Intervention, Comparison and Outcome), and for
each question, the best available evidence was searched in PUBMED/
MEDLINE, PsychInfo and the Cochrane library and included studies pub-
Scope
lished between January 1990 and April 2014. The evidence was extracted
The ESHRE guideline provides information about two main issues. First, into evidence tables, and the quality of all manuscripts was assessed. Three
about the preferences of patients regarding the psychosocial care, they 2-day meetings were organized to discuss the evidence for each question,
would like to receive at clinics and how this care is associated with in order to reach consensus about the final formulation of the
ESHRE guideline: routine psychosocial care 3

Figure 1 Schematic representation of the guideline approach for the provision of psychosocial care tailored to specific infertility and assisted reproductive
technology (ART) treatment stages and patient needs.

recommendations. For each recommendation, a grade (A – C) was assigned being involved in decision-making (Dancet et al., 2010). [A];
based on the strength of the supporting evidence (Scottish Intercollegiate receiving psychosocial care from sensitive and trustworthy staff members
Guidelines Network, 2010). In case of the absence of evidence, the GDG (Dancet et al., 2010; van Empel et al., 2010). [A];
offered good practice points (GPP), based on expert opinion. receiving attention to their distinct needs related to their medical history
After finalization of the guideline draft, stakeholders were invited to review (Karatas et al., 2010). [B]. minimal waiting times, not being hurried in
and comment on the guideline. The chair of the GDG (SG) and the methodo- medical consultations, and continuity of care (Ryan, 1999; Dancet et al.,
logical expert (NV) processed all comments received, by adapting the 2010). [A];
content of the guideline and/or by replying to the reviewer. The review the professional competence of fertility staff and receiving personalized
process is summarized in the review report, published on the ESHRE care (Dancet et al., 2010). [A];
website. The guideline will be considered for update 4 years after publication. the provision of opportunities for contact with other patients (Dancet
et al., 2010). [A];
Key questions and recommendations being in a clinic dedicated to infertility care (Dancet et al., 2010). [A];
The current document summarizes the key questions and the recommenda- the offer of specialized psychosocial care (infertility counselling or psycho-
tions for clinical practice. Further background information and the supporting therapy) before, during and after IVF treatment (Dancet et al., 2010). [B].
evidence for each recommendation can be found in the full version of the The GDG recommends fertility staff to be aware that:
guideline available at http://www.eshre.eu/Guidelines-and-Legal/Guidelines/ patients expressing a need for emotional support value the offer of specia-
Psychosocial-care-guideline.aspx. lized psychosocial care (infertility counselling or psychotherapy). [GPP];
Psychosocial care: patients’ preferences and well-being patients may value the presence of a chaperone during medical examina-
tions. [GPP];
Which aspects and components of psychosocial care are important to patients? men value rooms designated for producing sperm samples. [GPP].
Fertility staff should be aware that patients value:
how staff relate to them (Ryan, 1999; Schmidt et al., 2003; Dancet et al.,
2010; van Empel et al., 2010, 2011). [A]; Which routine psychosocial care components are important to patients?
staff showing understanding and paying attention to the emotional impact Fertility staff should be aware that patients value:
of infertility (Schmidt et al., 2003; Dancet et al., 2010; van Empel et al., written treatment-relevant information (Schmidt et al., 2003; Dancet
2010). [A]; et al., 2010; Mourad et al., 2011). [C];
that both partners are involved in the treatment process (Dancet et al., explanations about treatment results and treatment options (Schmidt
2010). [A]; et al., 2003). [C];
4 Gameiro et al.

understandable and customized (i.e. personally relevant) treatment infor- Relational/social needs
mation (Schmidt et al., 2003; Dancet et al., 2010; Mourad et al., 2011). [C]; Fertility staff should be aware that:
the provision of information about psychosocial care options (e.g. contact patients starting first-line or ART treatments do not have worse marital
details of support groups, online support options, access to infertility and sexual relationships than the general population (Slade et al., 1997;
counselling or psychotherapy) (Schmidt et al., 2003; Cousineau et al., Edelmann and Connolly, 2000; Verhaak et al., 2001, 2005a,b). [B];
2008; Dancet et al., 2010; Sexton et al., 2010). [B]. patients in fertility workup do not present higher prevalence rates of
sexual dysfunctions than the general population (Shindel et al., 2008). [C].
Fertility staff should be aware that IVF patients equally prefer in-person or
telephone consultation to discuss their treatment results and future plans
Emotional needs
(Stewart et al., 2001). [C]
Fertility staff should be aware that:
Which characteristic of fertility staff and clinics are associated with patients’ before the start of IVF treatment, patients are not more depressed than
well-being? the general population or matched controls (Verhaak et al., 2007a,b;
Lintsen et al., 2009; Lewis et al., 2013). [B];
Fertility staff should be aware that:
evidence about whether before the start of a first IVF cycle patients are
receiving patient-centred care is associated with better patient well-being
more anxious (state and trait anxiety) than the general population is incon-
(Aarts et al., 2012; Gameiro et al., 2013a,b). [C];
sistent (Verhaak et al., 2007a,b; Lintsen et al., 2009; Lykeridou et al., 2009;
positive staff characteristics (communication, respect, competence, in-
Kumbak et al., 2010; Turner et al., 2013). [B];
volvement and information) are associated with better patient well-being
before first-line or ART treatment, women do not show more psychiatric
(Aarts et al., 2012; Gameiro et al., 2013a,b). [C];
disorders or general psychopathology than the general population (Edel-
positive clinic characteristics (information, competence of clinic and staff
mann and Connolly, 2000; Salvatore et al., 2001; Dhaliwal et al., 2004; Van
and continuity) are associated with better patient well-being (Aarts et al.,
den Broeck et al., 2010; Zaig et al., 2013). [C].
2012; Gameiro et al., 2013a,b). [C].
Fertility staff should be aware that offering the currently available interactive How can fertility staff detect the needs of patients before treatment?
complex interventions (complex interventions integrate several psychosocial The GDG recommends that fertility staff:
components (e.g., information provision, training in coping or relaxation offer patients the opportunity to have their needs assessed and be informed
strategies.) is not likely to affect patient individual and relational well-being about their emotional adjustment before the start of treatment. [GPP];
(Shu-Hsin, 2003; van Zyl et al., 2005; Gürhan et al., 2007; Mori, 2009). [B] use the tools listed in Supplementary Data when assessing patients’ needs.
Fertility staff should provide preparatory information about diagnostic proce- [GPP].
dures because it decreases infertility-specific anxiety and stress (Pook and
Krause, 2005). [C]
Behavioural needs
Fertility staff should:
Fertility staff should be aware that:
tailored online psycho-educational interventions may improve infertility- be aware that currently there are no reliable pre-treatment tools or pre-
specific stress and self-efficacy, and the sexual and social concerns of par- dictors to identify patients who are not likely to start recommended fer-
ticular groups of patients (Cousineau et al., 2008). [C]; tility treatment (Gameiro et al., 2012). [B];
providing IVF patients with access to an internet-based personal health not assume that patients fully self-report on risk factors for reduced fertil-
record is not likely to promote their emotional well-being (depression, ity (e.g. eating disorders) (Freizinger et al., 2010). [C];
anxiety and self-efficacy) (Tuil et al., 2007). [C]. be aware that risk factors (e.g. smoking, alcohol use and diet) for reduced
fertility can be assessed with self-administered online tools (Landkroon
et al., 2010). [C].
Psychosocial care before treatment
The GDG recommends that fertility staff consider explicitly screening risk
The ‘before treatment’ period refers to the period that begins at the first visit
factors (e.g. drug use, eating disorders) for reduced fertility (Freizinger
to the clinic until the start of the first treatment cycle, being it either first-line
et al., 2010). [GPP].
treatment such as intrauterine insemination (IUI) or assisted reproductive
technology (ART) treatment. Relational and social needs
Fertility staff should be aware that:
What are the needs of patients before treatment? women experience higher social and sexual infertility-specific stress than
Behavioural needs men (Slade et al., 1997; Newton et al., 1999; Peterson et al., 2007, 2008,
Fertility staff should be aware that: 2014; Donarelli et al., 2012). [C];
one in 10 patients referred for fertility treatment chooses not to start the ways patients deal with their fertility problems are associated with
treatment (Brandes et al., 2009). [C]; infertility-specific relational and social distress: the use of meaning-based
the reasons patients state for not starting any type of recommended fer- coping (e.g. thinking about the fertility problem in a positive light, finding
tility treatment are: rejection of treatment (due to ethical objections, con- other goals in life) seems to be associated with lower fertility-specific
cerns about and lack of interest in treatment), personal reasons, relational marital and social distress; the use of avoidance coping strategies (e.g.
problems, financial issues and psychological burden of treatment avoiding being among pregnant women) seems to be associated with
(Gameiro et al., 2012). [B]; higher fertility-specific marital and social distress (Peterson et al.,
the reasons patients on the waiting list to start ART treatment state for not 2008). [C];
starting recommended ART treatment are: relational problems, psycho- in couples, the way one partner reacts to the infertility condition/diagno-
logical burden of treatment, personal reasons, clinic-related problems and sis is associated with how the other partner reacts (Peterson et al., 2008,
financial issues (Gameiro et al., 2012). [B]; 2014). [C];
a considerable number of patients have lifestyle behaviours that may nega- couples who have different views on the importance of parenthood and
tively affect their general and reproductive health (Klonoff-Cohen et al., social concerns may show lower relationship satisfaction than those
2001; Freizinger et al., 2010; Schilling et al., 2012). [C]. who have similar views (Peterson et al., 2003). [C].
ESHRE guideline: routine psychosocial care 5

Emotional needs Emotional needs


Fertility staff should be aware that: Fertility staff should provide preparatory information about medical proce-
women have higher levels of depression and infertility stress than men dures because it decreases infertility-specific anxiety and stress (Pook and
(Slade et al., 1997; Newton et al., 1999; Edelmann and Connolly, 2000; Krause, 2005). [C].
Peterson et al., 2003, 2014; Reis et al., 2013). [C]; The GDG recommends that fertility staff:
patients with a lower occupational status experience higher infertility refer patients identified by the SCREENIVF as being at risk of emotional
stress and anxiety than patients with a medium or high occupational problems to specialized psychosocial care (infertility counselling or
status (Lykeridou et al., 2009, 2011). [C]; psychotherapy). [GPP];
women whose partner has male factor infertility experience higher actively involve both partners of the couple in the diagnosis and treatment
anxiety than women with female factor, mixed or unexplained infertility, process. [GPP].
whereas the type of infertility diagnosis is not related to depression
(Lykeridou et al., 2009). [C]; Cognitive needs
the way patients deal with their fertility problems is associated with their Fertility staff should provide preparatory information about medical
infertility distress: the use of passive coping (e.g. rumination, withdrawal) procedures because it increases patient knowledge (Hope and Rombauts,
seems to be associated with higher levels of infertility distress. The use of 2010). [C].
active coping (e.g. goal-oriented problem-solving, thinking rationally
about the problem) seems to be associated with lower infertility distress
Psychosocial care during treatment
(Van den Broeck et al., 2010). [C];
individuals who perceive their partner to be available and responsive ex- The ‘during treatment’ period refers to time that encompasses any treatment
perience lower infertility stress than individuals who perceive their partner cycle, being it either first-line treatment such as IUI, or ART cycles.
to be avoidant and non-responsive (Van den Broeck et al., 2010; Donarelli
et al., 2012). [C]; What are the needs of patients during treatment?
in couples, each partner’s depressive symptoms are associated with their Behavioural needs
own and their partner’s infertility-specific distress (Peterson et al., 2014). [C]; Fertility staff should be aware that:
the SCREENIVF is an infertility-specific validated tool designed to be used around 1 in 12 patients and 1 in 5 patients do not comply with first-line and
before the start of treatment, to assess risk factors for emotional pro- ART treatment, respectively (Brandes et al., 2009; Gameiro et al.,
blems after a treatment cycle (Verhaak et al., 2010; Van Dongen et al., 2013a,b). [A];
2012). [B]. the reasons patients state for discontinuing recommended first-line treat-
ment are: postponement of treatment (i.e. stopping treatment for at least
The GDG recommends that fertility staff use the SCREENIVF before the start
1 year), logistics and practical reasons, rejection of treatment, perception
of each treatment cycle to assess patients’ risk factors for emotional pro-
of poor prognosis and the psychological burden of treatment (Gameiro
blems after the cycle. [GPP].
et al., 2012). [A];
How can fertility staff address the needs of patients before treatment? the reasons patients state for discontinuing recommended treatment
after one failed IVF/ICSI cycle are: financial issues, the psychological and
The GDG recommends that fertility staff refer patients at risk of experiencing
physical burdens of treatment, clinic-related reasons and organizational
clinically significant psychosocial problems to specialized psychosocial care
problems, postponement of treatment (or unknown), and relational pro-
(infertility counselling or psychotherapy). [GPP].
blems (Gameiro et al., 2012). [A];
the reasons patients state for discontinuing a recommended standard
Behavioural needs
ART treatment programme of three consecutive cycles are: postpone-
Fertility staff should:
ment of treatment, the psychological burden of treatment, the physical
provide preparatory information about medical procedures because it
and psychological burdens of treatment, and personal problems
promotes compliance (Pook and Krause, 2005; Lykeridou et al., 2009,
(Gameiro et al., 2012). [A].
2011). [B];
be aware that weight-loss programmes based on diet and exercise offered
Relational and social needs
pre-ART treatment may be effective in reducing weight and BMI (Clark
Fertility staff should be aware that:
et al., 1998; Moran et al., 2011). [B].
relational satisfaction of patients does not change from before they
The GDG recommends that fertility staff: start an IVF/ICSI cycle to after the pregnancy test (Verhaak et al.,
consider providing patients with information about lifestyle behavi- 2001). [B];
ours that may negatively affect their general and reproductive health. women report more intimacy with their partner during an IVF/ICSI cycle
[GPP]; than during a normal menstrual cycle, in particular at the retrieval and
support patients in changing lifestyle behaviours that negatively affect their transfer days of the cycle (Boivin and Takefman, 1996). [B];
general and reproductive health, as well as their chances of treatment women experience lower sexual satisfaction after the pregnancy test than
success. [GPP]. before the start of an IVF/ICSI cycle (Verhaak et al., 2001). [B];
women report lower social support from significant others in the period
Relational and social needs between the oocyte retrieval and the embryo transfer of an IVF/ICSI cycle
The GDG recommends that fertility staff: than during the equivalent period in a normal menstrual cycle (Boivin and
offer additional psychosocial care to patients at risk of experiencing Takefman, 1996). [B];
increased infertility-specific relational and social distress. [GPP]; during an IVF/ICSI cycle, 6 in 10 patients report treatment-
actively involve both partners of the couple in the diagnosis and treatment related absences from work and, on average, patients miss 23 h of work
process. [GPP]. (Bouwmans et al., 2008). [C].
6 Gameiro et al.

Emotional needs the ways women deal with their fertility problems are associated with
Fertility staff should be aware that infertility-specific distress; the use of avoidant coping (e.g. avoiding
patients’ emotional stress fluctuates during an IVF/ICSI cycle, with peaks being among pregnant women) is associated with higher infertility-specific
at the oocyte retrieval, the embryo transfer and the waiting period before distress; the use of emotional expressive coping (e.g. expressing feelings to
the pregnancy test (Boivin and Takefman, 1996; Boivin et al., 1998; Knoll significant others) is associated with lower infertility-specific distress
et al., 2009; Turner et al., 2013). [B]; (Panagopoulou et al., 2006). [C];
women’s positive affect decreases during an IVF/ICSI cycle (Knoll et al., patients with low acceptance of infertility and childlessness are more likely
2009; Boivin and Lancastle, 2010). [B]; to experience anxiety and depression when they are informed that the
anxiety and stress are higher when patients are anticipating results (e.g. in treatment was unsuccessful (Verhaak et al., 2005a,b). [C];
the waiting period before the pregnancy test, between oocyte retrieval patients who experience high helplessness regarding infertility and its
and embryo transfer) (Boivin and Takefman, 1996; Boivin et al., 1998; treatment are more likely to experience anxiety and depression when
Verhaak et al., 2007a,b; Knoll et al., 2009). [B]; they are informed that the treatment was unsuccessful (Verhaak et al.,
patients experience high emotional distress when they are informed that 2005a,b). [C];
the treatment was unsuccessful (Verhaak et al., 2007a,b). [B]; in couples, the way one partner reacts to infertility and its treatment is
when they are informed that the treatment was unsuccessful, 1 to 2 in 10 associated with how the other partner reacts (Berghuis and Stanton,
women experience clinically significant levels of depressive symptoms 2002; Knoll et al., 2009). [C].
(Verhaak et al., 2007a,b). [B];
after receiving the pregnancy test for their IVF/ICSI treatment, 1 in 4 Cognitive needs
women and 1 in 10 men have a depressive disorder. One in 7 women Fertility staff should be aware that currently there are no reliable methods or
and 1 in 20 men have an anxiety disorder (Volgsten et al., 2008, 2010). [B]. information about predictors of the concerns patients have about treatment
Cognitive needs (Klonoff-Cohen et al., 2007). [C]
Fertility staff should be aware that patients report moderate-to-high
concerns about achieving pregnancy with a healthy live birth, which do not How can fertility staff address the needs of patients during treatment?
decrease across treatment (Klonoff-Cohen et al., 2007). [C]
The GDG recommends that fertility staff refer patients at risk of experiencing
How can fertility staff detect the needs of patients during treatment? clinically significant psychosocial problems to specialized psychosocial care
(infertility counselling or psychotherapy). [GPP].
The GDG recommends the fertility staff use the tools listed in Supplementary
Data when assessing patients’ needs. [GPP].
Behavioural needs
Behavioural needs
The GDG recommends that fertility staff offer patients the opportunity to
Fertility staff should be aware that currently there are no reliable tools or pre-
discuss uptake or not of recommended treatment and receive decisional
dictors to identify patients not likely to comply with recommended treatment
support to deliberate their choice. [GPP].
(Gameiro et al., 2012). [B].

Relational and social needs


Relational and social needs
Fertility staff should be aware that:
Fertility staff should be aware that:
at the start of ovarian stimulation, at oocyte retrieval and after the preg-
offering the currently available interactive complex interventions (complex
nancy test, men report lower perceived support than women (Agostini
interventions integrate several psychosocial components (e.g., information
et al., 2011). [C];
provision, training in coping or relaxation strategies.) is not likely to improve
men report higher social isolation than women during an IVF/ICSI treat-
patient interpersonal relationships or sexual concerns (Shu-Hsin, 2003).
ment cycle (Boivin et al., 1998). [C];
[B];
patients with lower education level or physical or emotional complaints
providing IVF/ICSI-patients with access to an internet-based personal
due to IVF/ICSI may take more treatment-related hours off work (Bouw-
health record is not likely to improve their social support (Tuil et al.,
mans et al., 2008). [C].
2007). [B].
Emotional needs
The GDG recommends that fertility staff:
Fertility staff should be aware that:
offer additional psychosocial care to patients with specific characteristics
women are more likely to experience anxiety, depression, stress and/or
associated with social isolation or absence from work. [GPP];
psychiatric morbidity than men (Boivin et al., 1998; Berghuis and Stanton,
actively involve both partners of the couple in the treatment process.
2002; Verhaak et al., 2005a,b; Montagnini et al., 2009; Chiaffarino et al.,
[GPP].
2011). [B];
the number of previous treatment cycles is not associated with depres-
sion, anxiety or incidence of psychiatric disorders for men and women
Emotional needs
Fertility staff should be aware that:
undergoing treatment (Khademi et al., 2005; Volgsten et al., 2010; Chiaf-
offering the currently available complex interventions is not likely to
farino et al., 2011; Newton et al., 2013; Turner et al., 2013). [C];
improve patients’ depression levels (Shu-Hsin, 2003; van Zyl et al.,
patients undergoing mild stimulation IVF/ICSI (as opposed to standard
2005; Gürhan et al., 2007). [B];
stimulation) are more likely to experience negative emotional reactions
providing IVF/ICSI-patients with access to an internet-based personal
at oocyte retrieval but less likely to experience these reactions during hor-
health record is not likely to improve their emotional well-being
monal stimulation and after a treatment cycle cancellation or failure
(anxiety, depression and self-efficacy) (Tuil et al., 2007). [B].
(de Klerk et al., 2006). [C];
patients with a previous history of vulnerability to mental health disorders The GDG recommends that fertility staff:
are more likely to experience depression, anxiety and/or psychiatric mor- offer additional psychosocial care to patients with specific characteristics
bidity during treatment (Zaig et al., 2013). [C]; associated with negative emotional reactions. [GPP];
ESHRE guideline: routine psychosocial care 7

actively involve both partners of the couple in the treatment process. pills, smoke more often and consume more alcohol than former patients
[GPP]. that become parents via adoption, or spontaneously (Johansson et al.,
2009). [C]
Cognitive needs Relational and social needs
Fertility staff should be aware that providing IVF/ICSI-patients with access to Fertility staff should be aware that former patients that remain childless
an internet-based personal health record is not likely to increase their knowl- 5 years after unsuccessful IVF/ICSI treatment are three times more
edge about infertility and its treatment (Tuil et al., 2007). [B]. likely to separate than former patients that become parents via adoption,
The GDG recommends that fertility staff offer patients the opportunity to or spontaneously (Johansson et al., 2009). [C]
discuss and clarify their treatment-related concerns. [GPP]. Emotional needs
Fertility staff should be aware that:
Psychosocial care after treatment women who remain childless 10 years after unsuccessful IVF/ICSI treat-
The ‘after treatment’ period refers to the period starting 1 year after patients ment are not more likely to develop psychiatric disorders than women
undergo their last treatment cycle, and the section differentiates between of the same age who never underwent fertility treatment (Yli-Kuha
people who did not conceive with treatment (i.e. unsuccessful treatment) et al., 2010). [C];
and people who did (i.e. successful treatment that results in live birth). women with a persistent desire for pregnancy 3 to 5 years after unsuccess-
ful treatment may experience more anxiety and depression than women
What are the needs of patients after treatment? who find new life goals or women who become mothers (Verhaak et al.,
2007a,b). [C].
After unsuccessful treatment
Relational and social needs No evidence was available on detection of cognitive needs of patients after
Fertility staff should be aware that 2 years after unsuccessful IVF/ICSI treat- unsuccessful fertility treatment.
ment, patients are generally satisfied with their marital relationship (Sydsjo
Pregnancy after treatment
et al., 2005; Johansson et al., 2009). [C]
Emotional needs
The evidence about the behavioural and emotional needs of patients after un- Fertility staff should be aware that:
successful IVF treatment is too limited for supporting recommendations women who experienced multiple failed ART cycles or high stress during
(Verhaak et al., 2007a,b; Johansson et al., 2009). No evidence was found treatment may be more likely to experience symptoms of anxiety during
on patients’ cognitive needs. pregnancy (Hammarberg et al., 2008). [C];
patients with multiple pregnancies after ART are not more likely to experi-
Pregnancy after treatment ence poorer mental health than patients with a single ART pregnancy
Behavioural needs
(Vilska et al., 2009). [C].
Fertility staff should be aware that women who achieve pregnancy with
fertility treatment practice lifestyle behaviours that are similar to To our knowledge, there are no studies assessing predictors of the behav-
women who conceive spontaneously (Fisher et al., 2013). [C] ioural, relational or cognitive needs of patients after treatment.
Relational and social needs How can fertility staff address the needs of patients after treatment?
Fertility staff should be aware that the way patients relate to their foetus is
similar whether the foetus is conceived with ART treatment or spontan- After unsuccessful treatment
eously (Hammarberg et al., 2008; Hjelmstedt and Collins, 2008; Karatas The GDG recommends that fertility staff:
et al., 2011). [C] refer patients who, when ending unsuccessful treatment, experience or
are at risk of experiencing (in the short or long term) clinically significant
Emotional needs psychosocial problems to specialized psychosocial care (infertility coun-
Fertility staff should be aware that: selling or psychotherapy). [GPP];
women who conceived with IVF/ICSI do not experience more symptoms offer additional psychosocial care to patients who, when ending unsuc-
of depression, worse self-esteem or worse mental health during preg- cessful treatment, are at risk of increased infertility-specific psychosocial
nancy than women who conceive spontaneously (Hammarberg et al., distress. [GPP];
2008; Vilska et al., 2009; McMahon et al., 2011). [A]; offer patients the opportunity to discuss the implications of ending unsuc-
women who conceived with IVF/ICSI may experience more pregnancy- cessful treatment. [GPP].
specific anxiety than women who conceived spontaneously (Hammar-
berg et al., 2008). [B].
Pregnancy after treatment
Cognitive needs The GDG recommends that fertility staff:
Fertility staff should be aware that women with multiple pregnancies after refer patients who experience or are at risk of experiencing clinically
IVF/ICSI may have higher maternal expectations than women with spontan- significant psychosocial problems after successful treatment to
eous multiple pregnancies (Baor and Soskolne, 2010). [C]. specialized psychosocial care (infertility counselling or psychotherapy).
[GPP];
How can fertility staff detect the needs of patients after treatment? offer additional psychosocial care to patients at risk of increased infertility-
After unsuccessful treatment specific psychosocial distress after successful treatment. [GPP];
offer patients the opportunity to discuss their worries about pregnancy
The GDG recommends that fertility staff use the tools listed in Supplemen- achieved with fertility treatment. [GPP].
tary Data when assessing patients’ needs. [GPP].
Behavioural needs These GPPs were decided by consensus, as no studies were found on inter-
Fertility staff should be aware that former patients who remain childless ventions that can be delivered by staff to address the needs of patients who
5 years after unsuccessful IVF/ICSI treatment may use more sleeping underwent unsuccessful or successful fertility treatment.
8 Gameiro et al.

Conclusion Guideline. The authors also thank Willianne Nelen for advice on guide-
line development.
This is the first guideline offering evidence-based and good practice
recommendations to all fertility staff about how to implement routine
psychosocial care at fertility clinics. It was developed based on the Authors’ roles
Manual for ESHRE Guideline Development (Nelen, 2009). All recom- S.G. chaired the GDG and hence fulfilled a leading role in collecting the
mendations were resulted from consensus within the GDG and were evidence, writing the manuscript and dealing with reviewer comments.
submitted to an extensive transparent review by relevant stakeholders. N.V., as methodological expert, performed all literature searches for
During the development of this guideline, it became clear that the evi- the guideline, provided methodological support and was overall coord-
dence available to fully answer many key questions was either non- inator of the guideline production. All other authors, listed in alphabetical
existent, scarce or of low quality. Indeed, many issues could not be order, as guideline group members, contributed equally to the manu-
resolved based on the available literature. Of the 125 recommendations, script, by drafting key questions, synthesizing evidence, writing the differ-
45 (36.0%) are based on high-quality evidence (grade A or B), 51 (40.8%) ent parts of the guideline and discussing recommendations until
on moderate (grade C) and 29 (23.2%) formulated as a GPP based on consensus within the group was reached.
expert opinion. Future projects should endeavour to perform high-
quality research to address: (i) patient preferences about staff and
clinic characteristics, and psychosocial components; (ii) the impact of Funding
staff and clinic characteristics and psychosocial care on patient well- The study has no external funding; all costs are covered by ESHRE.
being; (iii) the needs of patients before, during and especially after fertility
treatment; (iv) development, validation and process evaluation of psy-
chosocial interventions that can be delivered by staff or self-administered Conflict of interest
by patients (e.g. provision of information, supporting patients after un- S.G., E.D., C.d.K., M.E., U.V.d.B., C.L.-J. and N.V. report no conflicts of
successful treatment, anxiety management during the 2-week waiting interest. J.B. reports grants from Merck & Co, consulting fees from Merck
period, etc.); (v) the needs of patients undergoing first-line treatments; Serono S.A. and Speaker’s fees from Merck Serono S.A. P.T. reports con-
(vi) the needs of men undergoing treatment; (vii) the influence of sulting fees from the German government and being the Chair of the
ethnic, religious, societal and cultural factors on the needs of patients; German Society for Fertility Counselling. C.V. reports consulting fees
(viii) how to identify patients at risk of non-compliance with recom- from Merck Serono S.A. C.M.V. reports being adviser in projects for
mended treatment and at risk of maladjustment after unsuccessful Merck Serono S.A. and Ferring S.A. on patient educational material. T.W.
treatment. reports speaker’s fees from Repromed, DGPM, Breitbach, DAAG, fiore,
Beyond the recommendations listed in the previous sections, four LPTW, MSD, salary/position funding at TAB-beim-Bundestag, BZgA and
main conclusions can be taken from the evidence reviewed in this guide- being the Vice-chair of the German Society for Fertility Counselling.
line. First, patients have clear preferences about the care they receive.
Fertility staff should know these preferences and incorporate them in
service delivery. Second, fertility staff must inform themselves of the spe- References
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Human Reproduction, Vol.0, No.0 pp. 1 –2, 2015
doi:10.1093/humrep/dev177

SUPPLEMENTARY DATA

This section compiles a list of available tools that all fertility staff can tools that are applicable to infertile patients. Although not neces-
use to assess the needs of patients before, during and after fertility sary, fertility staff may consider asking mental health professionals
treatment. These tools were either developed specifically for asses- for support in the interpretation of the data obtained by using the
sing patients facing infertility (i.e. fertility-specific) or are generic tools.

Tool Fertility Need(s) assessed Reference/link


.........................................................................................................
specific
Behavioural Relational Emotional Cognitive Other
and social
.............................................................................................................................................................................................
Beck Depression No 3 (Beck and Beamesderfer,
Inventory (BDI) 1976)
Concerns of Women Yes 3 (Klonoff-Cohen et al.,
Undergoing Assisted 2007)
Reproductive
Technologies (CART)
Cardiff Fertility Yes 3 (Bunting et al., 2013)
Knowledge Scale www.fertilityknowledge
(CFKS) .com
Fertility Quality of life Yes 3 3 3 Quality of treatment (Boivin et al., 2011)
(FertiQoL) www.fertiqol.com
Fertility Status Yes 3 (Bunting and Boivin, 2010)
Awareness Scale www.fertistat.com
(FertiSTAT)
General Health No 3 (Goldberg, 1978)
Questionnaire (GHQ)
Hospital Anxiety and No 3 (Zigmond and Snaith,
Depression Scale 1983)
(HADS)
Mental Health No 3 (Florian and Drory, 1990)
Inventory-5 (MHI-5)
Patient-centred care Yes Experiences of (van Empel et al., 2010)
questionnaire (PCQ) patient-centeredness
Quality of care from Yes Quality of care (Holter et al., 2014)
patient perspective—
specific to IVF treatment
(QPP-IVF)
SCREENIVF Yes 3 3 3 (Verhaak et al., 2010)
World Health No 3 (Development of the
Organization Quality of World Health
Life Tool Organization
(WHOQOL-BREF) WHOQOL-BREF quality
of life assessment. The
WHOQOL Group, 1998)

3 Indicates that the tool can be used to assess this need.


2

Goldberg DP. Manual of the General Health Questionnaire. Windsor, UK:


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Beck AT, Beamesderfer A. Assessment of depression: the depression Holter H, Sandin-Bojo AK, Gejervall AL, Wikland M, Wilde-Larsson B, Bergh C.
inventory. Pharmacopsychiatria 1976;7:151 – 169. Quality of care in an IVF programme from a patient’s perspective:
Boivin J, Takefman J, Braverman A. The fertility quality of life (FertiQoL) tool: development of a validated instrument. Hum Reprod 2014;29:534–547.
development and general psychometric properties. Hum Reprod 2011; Klonoff-Cohen H, Natarajan L, Klonoff E. Validation of a new scale for
26:2084 – 2091. measuring Concerns of Women Undergoing Assisted Reproductive
Bunting L, Boivin J. Development and preliminary validation of the fertility Technologies (CART). J Health Psychol 2007;12:352 – 356.
status awareness tool: FertiSTAT. Hum Reprod 2010;25:1722 – 1733. van Empel IW, Aarts JW, Cohlen BJ, Huppelschoten DA, Laven JS,
Bunting L, Tsibulsky I, Boivin J. Fertility knowledge and beliefs about fertility Nelen WL, Kremer JA. Measuring patient-centredness, the neglected
treatment: findings from the International Fertility Decision-making outcome in fertility care: a random multicentre validation study. Hum
Study. Hum Reprod 2013;28:385– 397. Reprod 2010;25:2516 – 2526.
Development of the World Health Organization WHOQOL-BREF quality Verhaak CM, Lintsen AM, Evers AW, Braat DD. Who is at risk of emotional
of life assessment. The WHOQOL Group. Psychol Med 1998;28: problems and how do you know? Screening of women going for IVF
551 – 558. treatment. Hum Reprod 2010;25:1234 – 1240.
Florian V, Drory Y. Mental Health Inventory (MHI)-Psychometric properties Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta
and normative data in the Israeli population. Psychologia 1990;2:26 – 35. Psychiatrica Scandinavica 1983;67:361– 370.

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