Incorporating Emotional Support to Decrease Patient Burden During

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Transcript Incorporating Emotional Support to Decrease Patient Burden During

Incorporating Emotional Support to
Decrease Patient Burden During
Infertility Treatment
Alice D. Domar, Ph.D
Domar Center for Mind/Body Health, Boston IVF, Beth Israel Deaconess Medical
Harvard Medical School
• I have no conflicts of interest relevant to this presentation.
Treatment Termination
• Discontinuation (dropout) in infertility treatment refers to patients who experience a
failed cycle and opt not to continue with treatment despite a favorable prognosis and the
ability to cover the cost of treatment
• Dropout rates, even for insured patients, are far higher than anticipated. They range from
• Until relatively recently, it was assumed that the primary reason why insured patients
terminated treatment was based on physician recommendation based on poor
prognosis, so called active censoring.
*Boivin et al HR 2012; 27: 941-50.
• However, there was a series of articles in 2004, published in Fertility
and Sterility, which dispelled these myths*.
• Active censoring is less common than anticipated. In one study, where the
cumulative dropout rate after 3 cycles was 62%, only 14% was due to active
• In the three articles published in 2004, the primary reasons given for
treatment termination were
• 1. moved away, achieved pregnancy, or gave up
• 2. psychological burden
• 3. depression and anxiety
*Domar Fertil Steril 2004; 81: 271-3.
Top Reasons for Treatment Termination:
Recent Research
• 2008: Verberg at al-384 couples
• Physical or psychological burden of treatment
• 2009: Brandes et al-319 couples
• Emotional distress and perceived poor prognosis
• 2012: Vassard et al-427 women, 350 men
• For women, low levels of family support, frequent conflicts with their partner,
conflicts with friends. For men, low levels of family support and partner
communication issues
• 2015: Lande et al-134 couples
• Psychological burden, lost hope
Patient Burden
• In a systematic review of reasons and predictors of discontinuation of
treatment of 22 studies which included 21,453 patients *
• Most common reasons were postponement of treatment (39%), physical or
psychological burden (19%), relational and personal problems (17%),
treatment rejection (13%), organizational (12%), and clinic issues (8%).
*Gameiro et al 2012; Hum Reprod Update; 18: 652-69
The Prevalence of Psychological Symptoms in
Infertile Individuals
• A 2004 study was the first to quantify through a structured psychiatric
interview the impact of infertility on first time infertility patients*.
• Of a total of 112 participants, 40.2% had a psychiatric disorder. The most
common diagnosis was generalized anxiety disorder (23.2%), followed by
major depressive disorder (17.0%), and dysthymic disorder (9.8%).
*Chen HR 2004;19:2313-8
More Recent Research on the Psychological
Impact of Infertility
• 2014: Peterson et al- 1406 couples
• Severe depressive symptoms in 11.6% of women and 4.3% of men
• 2015: Hollet et al- 174 women, 144 partners
• 39.1% of women and 15.3% of the men met the criteria for major depressive
• 2015: Maroufizadeh et al- 208 women, 122 men
• Anxiety scores significantly higher after one treatment failure and depression
scores significantly higher after two treatment failures than for patients with
no treatment
• 2016: Ying et al- systematic review of 26 studies*
• For women, anxiety and depression levels are elevated prior to treatment but
go higher on the day of oocyte retrieval, pre and post embryo transfer, and
while waiting for the pregnancy test
• A failed IVF cycle had long-term negative psychological consequences
• The authors concluded that infertility patients need couple-based support
*J Assist Reprod Genet 33: 167-79.
Patient Centered Care
• Very interesting fact about the research on patient centered care for
infertility patients.
• Every study has been based in Europe. There are studies in The
Netherlands, Belgium, Wales, Sweden and Portugal. There is no
research coming out of the US.
• There are two review articles on the topic which include US authors
(AD Domar, DB Shapiro) but the rest of the co-authors are all
European. And both first authors are based in Wales.
Most Recent Research on Patient-Centered
• 2011: Dancet et al-103 patients in 14 focus groups across 2 European
• Patient priorities: information, competence of staff, coordination,
accessibility, continuity, and physical comfort
• 2011: van Empel et al- 925 patients and 227 physicians
• Pregnancy rates most important to physicians, patient-centredness most
important to patients. Lack of patient centredness most cited reason for
switching clinics
• 2011: van Empel et al- 369 couples in treatment
• Patient priorities: lead physician, electronic medical record access, trained
infertility nurses, continuity of care, partner involvement
2012: Aarts et al- 427 infertility patients
Patient-centredness is significantly related to patient quality of life,
anxiety and depression
• 2012: Dancet et al- 48 European patients from four countries
Patient priorities: information provision, attitude of staff, competence of staff,
communication, patient involvement and privacy, emotional support,
coordination/integration, continuity, physical comfort, accessibility
• 2013: den Breejen et al- 19 patients, 15 health care professionals
Patient priorities: information, communication, accessibility
Health care professionals: information, communication, coordination/integration
• 2013: Gameiro et al- 322 women, 111 men
To promote patient wellbeing, clinics should promote treatment related information,
competence, accessibility, and communicaiton
• 2014: Holter et al- 497 heterosexual couples
Priorities: both men and women gave medical care and information after treatment the
highest scores.
• 2014: Pedro et al – 265 women, 83 men
Compliance with treatment were most correlated to information provision, respect for
patients’ values, continuity of care, team competence
Summary of the Information Thus Far…
• Patients drop out of treatment more often than expected
• For insured patients, the primary reason is psychological
• Symptoms of depression and anxiety are far higher than in the
general population
• Our European counterparts have introduced the concept of patientcentered care in infertility clinics
• Patients’ priorities are different from the ones assumed by health
care professionals.
• Patients rank patient centered care more highly than pregnancy
Interventions to Treat Distress in Infertile
• 2013: Garcia et al- 13 physicians evaluated by 2146 patients
• Physicians underwent two days of empathy training. Patients rated physicians
before and after the training.
• Physicians were trained about emotional intelligence, effective
communication, social styles, and empathy.
• Patients reported higher satisfaction on perceived information quality,
communication skills, and time dedicated to patient
• In the most recent meta-analysis on the impact of psychological
interventions on infertility patients*:
39 eligible studies
Statistically significant improvement in psychological distress
Statistically significant improvement in pregnancy rates
Larger reductions in anxiety were associated with greater improvement in
pregnancy rates
• Authors recommended psychosocial interventions, in particular cognitivebehavior therapy (CBT) to reduce psychological distress and improve
pregnancy rates
*Frederiksen et al BMJ Open 2015: 28.
• There has been one study which tested the impact of a psychological
intervention on dropout rates in insured IVF patients*
• 166 women about to begin their first IVF cycle
• Randomized to receive a mailed cognitive coping and relaxation intervention
(CCRI) or routine care (RC)
• Observed for 12 months
*Domar et al 2015; Fertil Steril 104: 440-51.
• 15.2% of the RC group discontinued treatment
• 5.5% of the CCRI group discontinued treatment
• CCRI patients had significantly more positive coping and quality of life,
as well as less anxiety than the control patients
• There were no differences in pregnancy rates between the two
• The study was published in Fertility and Sterility in August, 2015.
• It is the first study to assess the impact of a psychological intervention
on dropout rates in IVF patients
• The dropout rates was reduced 67% in the intervention group
• How many health care professionals contacted our research group to
get more information on obtaining the packet to their patients?
The Boston IVF/Domar Center Integrated
Model of Care
• Services available to all BIVF patients:
• Mind/Body Program for Infertility- a ten session group treatment program
which incorporates CBT, relaxation training, group support, and information
and recommendations about complementary and alternative treatments
• Individual and couples counseling- available five days/week, by Ph.D
• Cycle failure consult- all BIVF patients who experience an unsuccessful cycle
are entitled to a free 30 minute session with one of the psychologists
• Crisis intervention- any patient experiencing a crisis (no heartbeat on prenatal
scan, disappointing egg retrieval or fertilization results) can see one of the
psychologists within the hour
• Acupuncture is offered seven days/week, 365 days/year
• Nutrition counseling is offered twice per week
• Yoga is available by appointment
2015 Patient Visits to the Domar Center
• Acupuncture: 2921
• Psychological counseling: 1570
• Nutritional counseling: 311
• Mind/body program: 374
The Impact of Integrative Care on Patient
• In a recent survey of Boston IVF patients, 7.3% reported that the
presence of an onsite integrative care center influenced their decision
to come to BIVF
• With 5000 new patients per year company-wide, and $10,000
• The Domar Center* could draw $3,650,000 in new patient revenue
• This does not include the potential for integrative care services
decreasing patient dropouts
*Not all BIVF centers have rolled out integrative care centers yet
Recommendations to Decrease Patient
• Screen patients for distress levels prior to treatment, refer for
psychological support
• Provide clear information on how to obtain psychological support
• All staff and physicians to provide empathic and competent care
• Provide training in empathy and communication to health care team
• Promote explicit patient communication and shared decision making
• Offer interventions to alter negative lifestyle behaviors
*Gameiro et al Fertil Steril 2013; 100: 302-9
• For more information on BIVF or the Domar Center,