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Part III
Medical and Reproductive
Considerations
Module 1
Contraception
Contraception
Case Study
Contraception Choice
Considerations:
• Cervical spinal injury- immobility
• Obese
• Smokes
• Desires children in future
Contraception Module Objectives
At the completion of this module the
participant will be able to:
• Identify 3 major considerations when
prescribing contraceptives to women with
disabilities
• Identify the advantages and
disadvantages of the major types of
contraceptives for women with motor and
cognitive disabilities
Contraception Information
WWD often do not get appropriate contraception information
Onset of disability
Contraception information was
Source: Beckman 1989
Exploring Contraception Needs
• Ask if there is a need for contraception
• Do not assume there is no sexual activity,
because of a disability (Link to Sexuality –Part 1, Module 2)
• Consider who is requesting contraception and
make sure there is no coercion involved (Link to
abuse, Part 1, Module 3)
• Consider the patient’s capability to consent to
sexual relations
• Options regarding family planning should be
reviewed frequently and care individualized
Contraception Considerations
When making recommendations and
prescribing contraception
– Determine if method can be administered
when needed by the woman or coordinated
with home/partner assistance
– Consider side effects of contraception method
– Consider effects on menses
– Consider need for protection from STIs
– Consider cost – insurance coverage
– Consider need for legal consent (Link to Part !V- IDD)
Contraception Methods
Condoms
Advantages
• When used correctly and consistently, protects
from STI and pregnancy
• Widely available – free or low cost
Disadvantages/Considerations
• Physical ability to place the condom
• Discuss negotiation with partner and offer to
help
• Assess for latex allergy – consider polyethylene
condoms.
• Cognition to understand the need for compliance
Estrogen Containing
Contraceptives - Advantages
• Consistent use offers highly
effective pregnancy protection
• Cycle control usually good
• Decreased cramping
• Extended cycling possible
– Helps with menstrual hygiene
Estrogen Containing
Contraceptives - Disadvantages
• Potential increased risk of thromboembolism
– Immobility may increase risk
– Patches and 3rd generation OCPs increase risk
• Women with Down Syndrome may have
cardiac and vascular flow abnormalities that
may increase chance of thrombosis
• OCPs may require daily supervision to
assure adherence to on-time use
Estrogen Containing
Contraceptives- Disadvantages 2
• Patches:
– may be pulled off by patient
– may cause skin irritation
– weight limitation
• Ring:
– difficult to place (privacy issues)
• Estrogen containing contraceptives
interact with some medications
Interaction of Anticonvulsants and
Combination Oral Contraceptives
Anticonvulsants that decrease efficacy in OCPs
Barbiturates (including phenobarbital and primidone)
Carbamazepine and oxcarbazepine
Felbamate
Phenytoin
Topiramate
Vigabatrin
Anticonvulsants that do NOT decrease efficacy
of OCPs
Ethosuximide
Gabapentin
Lamotrigine
Levetiracetam
Tiagabine
Valproic acid*
Zonisamide
Progestin-only Pills
Advantages
– An alternative to those who have
contraindications to estrogen
containing contraception
Disadvantages
– Irregular bleeding (link to Menses and
AUB)
– Must be taken at the same time daily or
efficacy is affected
– Some anticonvulsants decrease
effectiveness.(Beck 1990)
Intrauterine Device (IUD)
Copper-T (10 years)
May increase cramping, irregular and heavy menses
Levonorgestrel IUD (5 years)
Irregular spotting in the first few months may be difficult to
manage
Amenorrhea may occur after 6 months
Advantages
•
•
•
•
Long term reversible contraception (5 or 10 years)
LNG-IUD decreases menses, may induce amenorrhea
Does not contain estrogen
Does not require assistance with daily or weekly
administration
Disadvantages
• Caution for women with spinal cord injuries (Link Part 4 Module 1)
• Insertion may require anesthesia
Depot-Medroxyprogesterone
Acetate (DMPA)
• Advantages
– Decreased menstrual flow – often amenorhea
– Requires minimal patient action - Desirable when
compliance with other methods is a problem
– Increases the seizure threshold (link to seizures, mod 2)
• Disadvantages
– Weight gain leading to mobility issues
– Requires quarterly administration by a health
professional
– Concerns about bone density: especially in women with
mobility issues and teenaged women
Implants
Etonogestrel (Implanon™) Progestin only
Advantages
• Single rod, replace every 3 years
• Highly effective contraception
Disadvantages
•
•
•
•
Frequent irregular menses
Should not be used with some anticonvulsants (link)
Requires minor invasive procedure for placement
Cost
Emergency Contraception
• Do not forget to discuss with patients
• Give prescription in advance
• Can be used sparingly by those who can
not routinely use hormonal contraception
(WHO 2004)
Sterilization
Advantages
• Permanent
• Non-hormonal
• Option: tubal ligation or hysteroscopic
tubal occlusion
Disadvantages
• Surgical risks
• Permanent
• Consent issues for women with
developmental disabilities
Sterilization Informed Consent
for Patients with Developmental Disability
• Conform to the patient’s values and beliefs
concerning reproduction - understands outcome to
the best of her ability
• Assure there is no coercion – fully voluntary
• Consider long-term reversible contraception – chose
least restrictive method preserving future
reproductive options
• Consider the well-being of a potentially conceived
child
• Understand and conform to the jurisdictional laws
and legal requirements. (Link to DD, Part V)
ACOG Committee Opinion #371, 2007
Summary
• Contraception options should be discussed with
all women with disabilities.
• Considerations involve:
– The physical and pharmacological interaction of the
contraception method
– The actual or potential conditions of the woman
– The amount of assistance available to and required
by the woman
– Her lifestyle and self-care needs
– Her goals for pregnancy
Considerations in Case Study
•
•
•
•
•
Immobility
High BMI
Possible autonomic dysreflexia
Self care – menses control
Desires to have children
Contraception Resources
• On contraception for women with cognitive disabilities:
– Let’s talk about health – What every woman should know:
workbook by C Heaton et al. The ARC of New Jersey 1996.
http://www.arcnj.org/html/mainstreaming_medical_care.html
• Other
– World Health Organization. Medical Eligibility Criteria for
Contraceptive Use, Third ed.. Geneva: World Health
Organization; 2004. Available at:
http://www.who.int/reproductivehealth/publications/mec/index.htm Accessed 5/30/08
– Family Planning – A global handbook for providers. World
Health Organization, Johns Hopkins Bloomberg School of Public
Health, United States Agency for International Development.
2007
References
1.
2.
3.
4.
5.
6.
7.
8.
9.
Beckmann CR, Gittler M, Barzansky BM, Beckmann CA. Gynecologic health care of women
with disabilities. Obstet Gynecol. 1989;74:75-9.
Cole JA, Norman H, Doherty M, Walker AM. Venous thromboembolism, myocaridal infarction
and stroke among transdermal contraceptive system users. Obstetrics and Gynecology
2007;109:339-46
American College of Obstetricians and Gynecologists. Practice Bulletin #73. Use of hormonal
contraception in women with coexisting medical conditions. 2006. ACOG. Washington DC
Trussel J. Contraceptive Efficacy. In Hatcher RA, Trussell J, Steward F, Nelson A, Cates W,
Guest F, Kowal D. Contraceptive Technology: 19th Revised Edition. New York: Ardent Media,
2007. http://www.contraceptivetechnology.org/table.html. Accessed May 17, 2007
Sciat BL. OrthoEvra, a new contraceptive patch. Pharmacotherapy 2003;23:472-80.
Dantrolene official FDA informaiton, side effects and uses. 2006. Downloaded from:
http://www.drugs.com/pro/dantrolene.html on 12/22/08
Boggs JG. Women’s Heallth and Epilepsy. eMedicine Neurology 2008. Downloaded form
http://emedicine.medscape,com/article/1186482 on 4/8/09.
Mattson RH, Cramer JA, Darney PD, Naftolin F. Use of oral contraceptives by women with
epilepsy. JAMA 1986;256:238-40.
Back DJ, Orme ML. Pharmacokinetic drug interactions with oral contraceptives. Clin
Pharmacokinet 1990;18:472-84.
References, Con’t
10.
11.
12.
13.
14.
15.
16.
17.
18.
19.
Center for Communication Programs. Oral Contraceptives – an Update. Population Reports
4.3, Series A, Number 9. 2000. Baltimore MD.
Koren G, Nava-Ocampo AA, Moretti ME, Sussman R, Nulman I. Major malformations with
valproic acid. Canadian Family Physician 2005;52:441-7.
Progestin-Only oral contraceptives: An update. The Contraception Report 1999;10(4):4-8
World Health Organization. Medical Eligibility Criteria for Contraceptive Use, Third ed..
Geneva: World Health Organization; 2004
Scholes D, Lacroix AZ, Ott SM, Ichikaw LA, Barlow WE. Bone mineral density in women using
Depot Medroxyprogesterone Acetate for contraception. Obstetrics and Gynecology
1999;93:233-8
Depot medroxyprogesterone acetate and bone effects. ACOG Committee Opinion No 415.
American College of Obstetricians and Gynecologists. Obstet Gynecol 2008;112:727-30.
Hertweck P. Contraception for adolescent women with coexisting medical conditions: An
expert interview with Paige Hertweck, MD. Medscape 7/10/08. Downloaded from
http://www.medscape.com/viewarticle/576021?src=mp&spon=16&uac=60174FT. on 7/15/08.
Implanon Professional Information. Drugs.com. Downloaded from
http://www.drugs.com/pro/implanon.html on 5/22/08.
Department of Reproductive Health and Research, World Health Organization. Family
Planning: A Global Handbook for Providers.2007 pg. 173
American College of Obstetricians and Gynecologists. Sterilization of women, including those
with mental disabilities. Committee Opinion #371, Obstet Gynecol 2007;110:217-20
Module 2
Menstrual Considerations and
Abnormal Uterine Bleeding
Menses Case Study
• Catamenial
seizures
• Menstrual care
needs
• Requires lifestyle
change
Objectives – Menstrual
Considerations and AUB
After completing this module, the participant
will be able to:
• Discuss the impact of menses and menstrual
abnormalities on the lives of women with
disabilities (WWD)
• Identify specific risk factors for AUB in WWD
• Describe the considerations for management
and treatment of these issues
Impact of Menses for WWD
Increased medical concerns
Increased social concerns
Increased physical needs
Assessing Menstrual Concerns
Focus on effect the bleeding has on daily life
Discuss with caretakers when appropriate
Use bleeding calendars
Catamenial Seizures
• Occur more frequently in WWD particularly those
with cerebral palsy and developmental disabilities
• Due to imbalance of estrogen /progesterone ratio
or rapid antiepilepsy drug (AED) clearance
• Establish relation to menstruation with a seizure
diary
• Evaluate midluteal progesterone and cyclic AED
levels.
• Treat with natural progesterone or AED
adjustments
Source, Klein, 1997
Incidence and Risk of AUB
WWD have greater incidence of conditions
that may contribute to AUB such as
– Thyroid disease
– Polycystic ovarian syndrome in women
with epilepsy
– Weight issues (Link to Part 3, Module 5)
– Often take antipsychotic and some GI
medications can cause high prolactin
levels
They also may report AUB more frequently
due to difficulty with menses
management
Determine the Cause of the AUB
• Speculum exam indicated, dependent on
age and bleeding pattern
– Consider an ultrasound
– Assess need for exam under anesthesia
• Indications for endometrial biopsy are the
same as in the general population
– assess need for anesthesia especially if at
risk for ADR
Treatment Considerations
Menstrual Concerns and AUB
The treatment should be tailored to
the diagnosis
Consider quality of life issues
Understand the goal of the patient
and those taking care of the patient
Medical Management - AUB
Treatment
Advantages
Disability Concern
NSAIDS
Decreases flow
Non-hormonal
Decreases flow
Gastric distress
Weekly
Immobility
Patients with IDD may pull it off
Contraceptive Ring
Monthly
Progesterone only pill
Daily
May be difficult to place
Patients with IDD may remove
Daily reminders
DMPA
4 times yearly
Progesterone
containing IUD
Implants
5 years
Risk of low bone density with prolonged use.
Weight gain interferes with transfers
Insertion issues
3 years`
Irregular bleeding, insertion issues
Combined oral
contraceptive
Contraceptive Patch
Source: ACOG Committee Opinion 2009 in print
Immobility, Daily reminders
Surgical Management
• Consider when medical management not
compatible or rejected
• Indications are the same as for any
woman
• May require counsel of ethics committee
or court order (Link to Part 4, Module 2 informed consent)
• Not usually appropriate for teens and
young women
Case Study Considerations
Presenting problems:
• Catamenial seizures
• Menstrual hygiene needs
• Menorhagia
Findings:
• Pelvic exam and ultrasound
normal
• Hgb 11.5
Your suggestions?
Menses Management and AUB
Summary
• Menses may cause great concern for
women with disabilities
• Menses can exacerbate disability
symptoms
• The source of the AUB should be
determined and treated
• Menstrual concerns and AUB can usually
be managed medically
References –
Menstruation and AUB
•
•
Klein P, Herzog AG. Endocrine aspects of partial seizures in: Schachter SC, Schomer DL, eds.
The comprehensive evaluation and treatment of Epilepsy. San Diego, CA Academic Press; 1997:
p. 207-32. Downloaded from
http://professionals.epilepsy.com/wi/print_section.php?section=hormones_catamenial on 12/15/08
American College of Obstetricians and Gynecologists Menstrual manipulation in Adolescents with
Disabilities. Committee Opinion #458. December 2009
Other Resources:
•
•
•
•
ACOG – Committee Opinion #349. Menstruation in Girls and Adolescents: Using the Menstrual
Cycle as a Vital Sign , 2006
ACOG – Technology Assessment #5. Sonohysterography. 2008
ACOG –Abnormal Uterine Bleeding. District 1 Medical Student Education Module. 2008
Powerpoint presentation. Downloaded on 6/23/09 from
http://www.acog.org/acog_districts/dist1jf/teachingmoduleabnormaluterinebleeding.ppt
ACOG- Practice Bulletin #14. Management of Anovulatory Bleeding. 2000
Module 3
Pregnancy and
Parenting
Case Study –
Pregnancy and Parenting
•Strong desire for child, good
support system
•Can independently transfer
from wheel chair
•Bladder infections
•Visually underweight - poor
oral health
•Spasticity - uses baclofen to
control
Objectives – Pregnancy and
Parenting
After reading this module, the participant will
be able to:
• Identify 3 prenatal considerations to be explored
with a WWD planning a pregnancy
• Recognize 3 frequent pregnancy –disability
interactions
• Describe labor and delivery considerations
• Identify measures for successful postpartum care
including breastfeeding
• Identify resources for parenting with a disability
Research on Disability and
Pregnancy
State of the Field
– There are very few data on
pregnancy, labor and delivery in
women with disabilities
– Most studies have focused on
women with acquired versus
congenital disabilities and have small
samples
– There is little research on parents
with disabilities and their children
Special Considerations for WWD
and Pregnancy
Effect of the disability on pregnancy,
labor and delivery
Pregnancy Planning for WWD
Issues to explore
1.
2.
3.
4.
Genetic counseling
Pregnancy-Disability interactions
Prevention of obstetric complications
Prevention of adverse impact of pregnancy
on the disability
5. The effect of the disability on labor and
delivery and postpartum care
Preconception OB visit is recommended
(Thierry 2006)
Genetic Counseling
• Genetic counseling specific to a
congenital disability
• Standard indications for genetic
counseling also apply
• Avoid assumptions
• Genetic history may not be
available for a variety of factors.
Interactions Between Pregnancy
and Disability
• Counseling (pre and post
conception) regarding concurrent
medications and alternatives
• Distinction between symptoms of
pregnancy and those of a
disability-related problem
• Conditions may improve or worsen
in pregnancy (Link to Part 4, Module 1)
• Considerations for subsequent
pregnancies
Medication Considerations
• Anticonvulsants
– Valproate – D
– Carbamezepine – D
– Lamotrigine – C
- Phenytoin - D
- Phenobarbital - D
• Mood Stablizer Lithium – Category D
• Antipsychotics Risperidone – Category C
• Muscle Relaxants
– Baclofen – Category C
– Dantrolene – Category C
Frequent Disability-Related
Conditions of Pregnancy
• Urinary tract infections and incontinence
(Link
Module 4)
• Increased frequency and severity of muscle
spasms
• Increased fatigue
• Increased frequency of seizures
Prenatal Considerations:
Mobility Disability
• Increase in body weight and change in
center of gravity: less stable transfers
and risk of falls
• Changes in activity level due to fear of
falling
• Increase in use of assistive devices
• Alterations in fit of prostheses
• Increased incidence of pressure sores
Prenatal Considerations:
Nutrition, Diet, Exercise
•
•
•
•
•
Weight monitoring
Nausea/vomiting
Bowel management
Assure adequate hydration
Meeting enhanced nutritional
needs
• Encouraging exercise
Prenatal Considerations:
Preparing for Labor
• Recognition of ROM, bleeding and labor
• Plan for transportation to hospital
• Labor plan made in 2nd trimester to
include:
– Positioning
– Preview of labor and
delivery rooms
Labor and Delivery: Analgesia
• Antepartum evaluation and consultation
• Limited use of regional techniques in
spinal abnormalities, e.g. osteogenesis
imperfecta or spina bifida
• Epidural to prevent and manage
autonomic dysreflexia
Labor and Delivery:
Special Considerations
• Same obstetric indications for instrumental
or cesarean deliveries, however
– Assisted vaginal delivery may be indicated
– Increased likelihood of C-section in short stature
syndromes
• Risk of V-P shunt contamination with Csection (link to Part 4 Module 2)
• Be alert to latex allergy
Postpartum Considerations
• “Congratulations!” Not “ How can this
•
•
•
•
•
•
work?”
Antepartum rehabilitation nurse in-service to
obstetric nurses
Increased medical surveillance
Potential increased length of stay
Self and infant care adjustments
Early involvement of pediatrician
Effective family planning
Parenting
Plan for parenting
during pregnancy
with rehabilitation
specialists,
community and peer
support.
Parenting Status for Women and
Men With and Without Disabilities
Percentage of adults with children under
18 by gender and disability status
Source: Jans L, 1999
Breastfeeding and Infant Feeding
• Nutritional, immunologic and
psychologic advantages unchanged
• Special considerations:
– Medications
– Adequacy of milk supply and
need for supplement (Cowley, 2005)
– Positioning and holding infant
– Fatigue
Meals on wheels
Affirming Parenting
• Parenting is a learning process for
everyone
• Anticipate success
• Support despite concern
• Screen for depression
Wheelchair/Stroller
Adaptive Parenting Equipment
Wheelchair
with baby
stroller
attachment
Baby Carrier
Adaptive Parenting Equipment
Baby Lifter
Adaptive Parenting Equipment
Infant crib with accessible side
Link to http://lookingglass.org/index.php
Research Priorities on Disability
and Pregnancy
• Need database with
information on conception,
pregnancy, labor and
delivery in large numbers
of women with disabilities
• Study the impact of
disability on family
formation
Summary –
Pregnancy and Parenting
Steps to prevent obstetric complications
– Preconceptional plan
– Meticulous management of concurrent medical
conditions
– Adequate nutrition and hydration
– Appropriate use of prescribed and OTC
medications
– Care coordination
Parenting considerations – Creativity is key
Case Study Exploration
•Assess assistance needed during pregnancy
and infant care
•Discuss baclofen use
•Nutrition consult
•Make accommodations for following weight
•Anesthesia consult
•Communication during labor and delivery
•Parenting resources
Resources - move
• March of Dimes Birth Defects Foundation
[email protected] or www.marchofdimes.com
• Through the Looking Glass – Resource finder for pregnant women
and parents with disabilities. www.throughthelookingglass.org
• Parents with Disabilities Online - http://www.disabledparents.net
• The ARC of the US – Resource identification for people with
developmental disabilities. http://www.thearc.org/
References
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
Beckmann CR, Gittler M, Barzansky BM, Beckmann CA. Gynecologic health care of women with disabilities. Obstet
Gynecol. 1989;74:75-9.
Thierry JM. The importance of preconception care for women with disabilities. Maternal and Child Health Journal
2006;10:S195-6.
Delzell JE, Lefevre ML. Urinary tract infections during pregnancy. American Family Physician 2000;61:713-21
NINDS Spina Bifida Information Page. National Institute of Neurological Disorders and Stroke (NINDS) National Institues of
Health. Accessed at www.ninds,nih.gov/disorders/spina_bifida/spina _bifida.hem. On 1/25/07
American College of Obstetricians and Gynecologists. Use of psychiatric medications during pregnancy and lactaton. ACOG
Practice Bulletin #92, 2008.
Holmes LB, Harvey EA, Coull BA, Huntington KB, Khoshbin S, Hayes AM, Ryan L. The teratogenicity of anticonvulsant
drugs. N Engl J Med 2001;344:1132-8
Cunnington M, Tennis P and the International Lamotrigine Pregnancy Registry Scientific Advisory Committee. Lamotrigine
and the risk of malformations in pregnancy. Neurology 2005;64:955-60.
Prakash P I,V, Nasar MA, Rai R, Madhyastha S, Singh G. Lamotrigine in pregnancy: safety profile and the risk of
malformations. Singapore Med J 2007;48:880-3.
Bromley, R, Mawer, G, Clayton-Smith, J, Baker, G. Autism Spectrum disorders following in utero exposure to antiepileptic
drugs. Neurology 2008;71:1923-4
Meador K. Valproate should not be used in women who may become pregnant. Report at the American Epilepsy Society
62nd Annual Meeting, Seattle 2008.
Madorsky JG. Influence of disability on pregnancy and motherhood. WJM 1995;162:153-4.
Moran LR, Almeida PG, Worden S, Huttner KM. Intrauterine baclofen exposure: A multidisciplinary approach. Pediatrics
2004;114::E267-69. Downloaded from http://pediatrics.aappublications.org/cgi/content/full/114/2/e267 on 16/10/08
Jans L., Stoddard, S. Chartbook on women and disability in the United States. 1999 An InfoUse Report. Washington, DC;
U.S. Department of Education. National Institute on Disability and Rehabilitation Research. Retrevied 11/15/06 from
http://www.infouse.com/disabilitydata
American Academy of Pediatrics and The American College of Obstetricians and Gynecologists. Breastfeeding Handbook
for Physicians, Washington, DC. 2006 Table Pgs. 238-242.
Cowley, KC. Psychogenic and pharmacologic induction of the let-down reflex can facilitate breastfeeding by tetraplegic
women: A report of 3 cases. Archives of physical medicine and rehabilitation 2005;86:1261-4.
Module 4
Urinary and Bowel
Considerations
Case Study
Bladder and Bowel Considerations
• Spina bifida @T8 – flaccid bladder
• Bladder management plan – intermittent
catheterization 3 times daily
• Symptoms: Pelvic pain and tenderness
over right kidney, fever, full bladder
• Uninformed attendant
• Unkempt condition
Urinary and Bowel
Considerations- Objectives
At the completion of this module the participant will
be able to:
• Discuss the medical considerations associated with
neurogenic bladder
• Describe the conditions of the upper and lower urinary
system common for women with physical disabilities
• Describe 3 management programs for neurogenic
bladder
• Identify considerations in maintaining a bowel
management program
Neurogenic Bladder
• Types:
– flaccid bladder – no micturation
reflex
– spastic bladder – overactive
micturation activity
• Cause: Varies depending on
location of the neurological lesion
– central or peripheral.
Conditions Resulting From
Neurogenic Bladder
• Lower Urinary System: Cystitis and bladder
stones
• Upper Urinary System: Pyleonephritis, renal
calculi, hydronephrosis
• Skin breakdown (link to Part 2, Module 2 Skin)
• Quality of life/social exclusion
Management of Neurogenic
Bladder
•
•
•
•
•
Manual bladder emptying
Medication – Anticholinergics
Intermittent catheterization
Indwelling catheter
Surgical procedures –
Suprapubic tube, ileal conduit.
Bowel Impairment
•
Neurogenic bowel
–
–
Reflexive bowel- activity occurs when reflex
initiatated
Nonreflexive – no active sphincter activity
If bowel management is not adequate
–
–
–
–
–
Fecal impaction
Bowel obstruction
Autonomic dysreflexia (Link Part 4, Sub-Module 1)
Skin breakdown (Link – Part 2, Module 2)
Social isolation/loss of wages
Bowel Management –
Medication Considerations
Medication induced diarrhea or constipation
– Types of medications to consider
• Antibiotics
• Anticholinergics
• Pain medications
– Before prescribing- ask about previous use
and side-effects
– Assess for increased assistance or bowel
management program alteration.
Specific GYN and OB
Considerations
•
•
•
•
Management during pregnancy
Treatment of urinary tract infections
Medication side effects
C-Section & GYN Surgery
Summary
Urinary and Bowel Considerations
• Neurogenic bladder is associated with infections and
stones of the bladder and kidneys as well as skin
breakdown and incontinence.
• Neurogenic bladder management includes medication,
urine removal by pressure or catheterization or urinary
diversion surgery.
• Both bowel and bladder management depend on
consistent schedules and adequate fluid intake.
• It is possible to achieve social bowel and bladder
continence for almost all individuals.
Case Study Discussion
Bladder and Bowel Considerations
Considerations
• Neurogenic
bladder
• Pelvic pain and tenderness over right
kidney
• Fever
• Full bladder
• Uninformed attendant
• Unkempt condition
References and Resources
• Jackson A, Waites K. Preventing and managing common
complications: Obesity, skin problems, bone loss and bladder/bowel
problems. From Women with Disabilities Symposium:Providing
Quality Care for Women with Visual, Hearing and Mobility
Impairments. Boston, 2005
• Jackson A. Preventing and managing common complications in
women with disabilities. Power point presentation available at:
http://www.authorstream.com/Presentation/Pumbaa-9720-Preventing-ManagingCommon-Complications-Wo-Women-Disabilitiespreventingandmanagingcommoncomplicationsinwomenwith-ppt-powerpoint/
Slides 32-62
• Agency for Health care Quality and Research. Overview: Urinary
incontinence in adults: Clinical practice guideline update. 1996
Downloaded at http://www.ahrq.gov/clinic/uiovervw.htm. on 2/20/09
Module 5
Weight, Diet and
Physical Activity
Case StudyWeight and Physical Activity
Objectives – Weight, Diet and
Physical Activity
After reading this module, the participant will
be able to:
• Define the concerns in determining the
appropriate weight for WWD
• Discuss dietary considerations for WWD
• Discuss the effect of weight on WWD
• Discuss the effect of disability on weight
• Identify resources to promote adaptive physical
activity.
What is an appropriate weight?
• Under- and overweight are defined by body
mass index (BMI)
• Standard BMI calculations may not be the
optimal standard for women with disabilities
– Impact of muscular atrophy or limb loss
– Other measurement tools
Bodytronics- Body fat analyzer
www.bodytronics.com
Weight measurement
Weight and weight
change can be a
critical measurement
in obstetrics and for
disease management
Underweight
• Women with disabilities are more likely to
not be within the “normal” weight range.
• They may be underweight due to:
– Direct result of the disabling condition
• Decreased muscle mass
• Spasticity
– Secondary effect of the disabling condition
• Loss of appetite
• Difficulty obtaining or preparing meals
• Difficulty swallowing
Overweight / Obesity
• Twice as common among
women with disabilities
• Obesity can predispose
to disability or disability
can predispose to obesity
CDC, MMWR, 2002
Percent
Prevalence of Healthy Weight for
Women with Intellectual Disabilities (ID)
Source: National Center for Health Statistics. 1997
National Health Interview Survey (NHIS)
Dietary Needs
• Balanced nutrition is important for sustaining
energy levels, maintaining skin integrity,
avoiding constipation, preventing
osteoporosis
• Calcium and Vitamin D
supplements recommended
Other Nutritional Considerations
• Adequate fluid intake, especially for those
with indwelling urinary catheters
• Access to nutritious foods
• Poor oral health– unable to consume
nutritious foods
Leisure Time
Physical Activity: Adults
U.S. Department of Health and Human Services. Healthy People 2010:
Understanding and Improving Health. 2nd ed., 2000.
Physical Activity for WWD
• Assistive devices
are available to
improve strength
and fitness
• Enhances overall
health, wellness
and quality of life
• Multiple barriers to
regular exercise
Saratoga hand cycle www.randscot.com
Pedometers Track More Than
Walking
Source: National Center on Physical Activity and Disability http://www.ncpad.org/
Active Women with Disabilities
Resources for physical activity
• National Center on Physical Activity and
Disability www.ncpad.org
• Active Living by Design
www.activelivingbydesign.org
Summary – Weight, Diet and
Physical Activity
• Weight measurement is an important
consideration
• WWD are more likely to be underweight or
obese
• Consuming a nutritious diet may be more
difficult for individuals with disabilities
• WWD are less likely to engage in physical
activity but adaptive resources are
available
Back to the Case Study
Considerations:
• Decreased mobility
• Increased weight
• Sexuality and
preventive care
Module 6
Adolescents with
Disabilities
Objectives
Adolescents with Disabilities
Upon completion of this module, the participant will
be able to:
• Describe the prevalence of disability among
adolescents
• Discuss the perceptions of adolescents with
disabilities
• Identify 3 elements needed for effective sex
education for adolescents with disabilities
• Discuss puberty and menstruation in
adolescents with disabilities
Case Study – Adolescent Care
Prevalence of Disabilities Among
Adolescents
• 5% of U.S. adolescents have a disability
with functional limitations
• Leading chronic conditions per 1000
– Cerebral palsy 1.8
– Autism 1.8
– Diabetes 1.0
– Spina bifida 0.2
Source: Blum RW, 2006
Perceptions of Adolescents with
Disabilities (Ages 15-19)
Most are hopeful about the future, but are more
likely than the general population of teens to
report:
• Feeling lonely and not being liked by others (8% vs
2%)
• Having little or no affiliation with school (34% vs
12%)
• Being cared about “a lot” by family and “less” by
friends (59% vs 31%)
Most have expectations on employment and
independent living similar to the general
population.
Source: Wagner, 2007
Prevalence of Risk Factors Among
15 -19 Year Olds with Disabilities
Factors
Controls
N = 15,689
Mobility
Impaired
Learning
Disabled
N = 167
N = 1301
Welfare status
9.5%
20.0%***
17.1%***
Repeated a
grade
18.2%
34%***
49.6%***
Appears old for
age
12.1%
13.8%***
11.5%***
Sexually
experienced
36.9%
45.7%***
38.5%***
Nonheterosexual
5.3%
11.3%**
6.7%*
*P<0.05; ** P<0.01; *** P<0.001, compared to controls
Source: Blum, 2006
Substance Use by Adolescents
with Disabilities, Ages 18-21
Substance use reported during past 30 days
Substance
Alcohol Use
Never
> 2 Drinks in past 30 days
Tobacco Use
Never
Used every day
Illegal Drug Use
Marijuana use
Any drug use
Source: Yu 2008
General
population
Teens with
disabilities
44%
35%
54%
22%
64%
24%
70%
20%
27%
28%
16%
17%
Sexuality in Adolescent Girls
With and Without Disabilities
Girls’ Experiences at Age 16 by Physical Disability Status
Physical Disability
Status
Never Had Sex All Consensual Been Forced
No disability
66.3%
27.7%
6.0%
Minimal disability
48.2%
40.9%
10.9%
Mild disability
63.7%
23.4%
12.9%
Severe disability
57.9%
31.0%
11.1%
1994-1995 Wave 1 Data from the National Longitudinal Study of Adolescent Health .
Probability sample of adolescents in grades 7-12 in US Schools. N = 24,105
Disability severity index is set on a functional, self and parent defined scale at the time of
the survey
Source: Cheng and Udry, 2002
Sexuality in Adolescents with
Disabilities
• May lack knowledge /skills for safe sex
• Past sexual abuse may impact sexual expression
(Link Part 1, Module 3)
• Management:
– Assess for knowledge deficits
– Provide sex education resources
(link to Part 1- Mod 2)
Sex Education for Adolescents
with Disabilities
Assess ability
to consent
Assess
Knowledge
Give age and
development
level
appropriate
education
Pubertal Maturation
For most adolescents with disabilities
the process and pattern of pubertal
maturation varies little from peers. It’s
the tempo of maturation that frequently
varies.
Source: Blum 2006
Menses in Adolescents
• Menarche can cause anxiety
• Periods may significantly interfere with
independence for the teen
• Request from care providers to stop the
periods
– Assess interference with normal activities
– Decide course of action with the teen and
family (Link to Menses and AUB)
Menstrual Suppression
GOAL – safe, minimally invasive,
permanent.
• Best options
–
–
–
–
–
Antiprostaglandin drugs – NSAIDs
Combined oral contraceptives
Continuous oral progestins
DMPA
Levonorgestrel IUD
• Usually not appropriate
– Endometrial ablation
– Hysterectomy
non-
Considerations for Care –
Separation From Family
Encourage expression of fears and concerns
Taking A History
Include:
3 C’s
Confidential
Contraception
Coercion
and
3 S’s
Sexual Knowledge
Safety
Substance Abuse
GYN Examination for Adolescents
•
•
•
•
Only indicated for specific reasons
May require pre-exam counseling session
Proceed slowly and gain cooperation
Use alternative positioning methods (link – Part 2,
Module 1)
• Consider not using speculum
• Try a modified bimanual examination
Exam Follow Up/ Contraception
• Post exam counseling/assessment
• Consider HPV vaccination
• Teach or provide for education on condom
use as well as other STD protection
strategies
• Assess contraception needs (Link to Module 1 and
Abuse in Part 1, Module 3)
Dispelling Myths of Adolescents with
Disabilities
Abbey Curran was crowned Miss Iowa USA 2008 and become the first
state winner in the history of the Miss USA Pageant with a physical
disability. Born with cerebral palsy, which has affected her mobility
and strength as well as manner of learning, Abbey has dedicated her
life to proving that no challenge or limitation is great enough to stop
her from achieving her dreams.
Summary - Adolescents
• Teens with disabilities need
– Help to achieve independence
– Assistance to transition from pediatrician
– Attention to health risk behaviors and
situations
– Education and guidance on sexuality and
contraception
– Special care during GYN examination
– Remember the 3 C’s and 3 S’s each visit
Case Study Follow UP
Considerations
• Gain rapport
• Treat anemia
• Menstrual management education
• Examine
• Medical treatment
• Parental support
1.
2.
3.
4.
5.
6.
7.
8.
References - Adolescents
Blum RW, Gates WH, Adolescents with disabilities. John’s Hopkins Bloomberg School of Public
Health. Adolescence and Adolescent Health 2006. Located at
http://.ocw.jhsph.edu/courses/AdolescentHealthDevelopment/PDFs/Lecture8.pdf . Accessed
6/3/08
Cheng MM, Udry JR. Sexual behaviors of physically disabled adolescents in the United States.
Journal of Adolescent Health 2002;31:48-58
Suris JC, Resnick MD, Cassuto N, Blum RW. Sexual behavior of adolescents with chronic
disease and disability. Journal of Adolescent Health 1996;19:124-31
Wagner M, Newman L, Cameto R, Levine P, Marder C. Perceptions and expectations of youth
with disabilities: A special topic report of findings from the National Longitudinal Transition Study
– 2 (NLTS2). 2007 US Department of Education, (NCSER 2007-3006) Menlo Park CA:SRI
International. Accessed at http://ies.ed.gov/ncser/pubs/ on 6/4/08
Edwards JP, Elkins TE. Just between us: A social sexual training guide for parents and
professionals with concerns for persons with developmental disabilities. Austin TX; Pro-Ed; 1988.
Elkins TE. Providing gynecologic care for women with mental retardation. Med Asp Hem Sex.
June, 1991;56-62.
Yu J, Huang T, Newman, L. Facts from NLTS2: Substance use among young adults with
disabilities. 2008. US Department of Education (NCSER 2008-3009). Menlo Park CA; SRI
International. Accessed at http://ies.ed.gov/ncser/pubs/ on 6/4/08
ACOG. Cervical Cancer Screening in Adolescents, Committee Opinion #300, American College
of Obstetricians and Gynecologists. October 200
Resources for Adolescents
1.
Health and Medical Issues for Transition-age Adolescents with Disabilities and /or Health Care
Needs: A guide for Teenagers and Their Families. By Pomeroy M, Everson JM, Suillory JD, Fass
AL. Louisiana: Healthy and Ready to Work 2001. Accessed at
http://www.answers4families.org/family/youth-special-needs/healthcare-transition/health-andmedical-issues-transition-age-adolescents-disabilities-health-care-n Accessed 6/3/08
Module 7
Aging and Osteoporosis
Case History - Margaret
•Age 52
•Multiple sclerosis for 15
years with progressive
impairment
•Currently independent with
care and transfers
•Extreme fatigue
•Painful intercourse
Objectives: Aging and
Osteoporosis
After completing this module, the participant will be
able to:
• Discuss the interrelationship between aging and
disability
• Identify 3 specific ways in which menopause
symptoms may impact WWD
• Describe why WWD are at high risk for
osteoporosis
• Discuss prevention of low bone mass at early
age for WWD
Aging With A Disability
• Patients with congenital or childhood acquired
disabilities are increasingly surviving into senior
adulthood.
• Formerly independent women may require
assistance for bathing, toileting or dressing.
• Cognitive changes
• Dietary issues
• Problems with medications
Aging May Increase Impairment
Increased incidence of conditions associated with age
Diabetes –
decreased
vision,
amputation
Vascular
disease –
stroke
Arthritis –
pain and
decreased
mobility
Aging Contributes to Decreased
Self Care Management
Age related degenerative disabilities impact
self care and care of secondary conditions
Vision
impairment
Hearing
impairment
Mobility
impairment
Memory
and
cognitive
impairment
Psychosocial Issues
•
•
•
•
•
Fewer family caretakers available
Financial issues
Increased risk for abuse and neglect
Increased incidence of depression
Interest in sexuality is maintained
Link to Part 1, Module 2- Sexuality and
Module 3 – Psychosocial
Peri-Menopause
• Women with developmental disabilities may
have an unusual reaction to hot flashes
• Menstrual hygiene issues
due to irregular menses
• Increase in disability symptoms
• Estrogen replacement therapy
has risks associated
Aging and Poly-Pharmacy
• Avoid use of benzodiazepines- prolonged
metabolism and excretion can result in delirium.
(Hughes, 1998)
• Anticonvulsants such as phenytoin,
carbamezepine, valproic acid, can alter vitamin
D metabolism. Traumatic fracture can also be
secondary to seizure activity itself. (Ray, 2002, Schranger
2004)
• Anticholinergics commonly used for
incontinence, drooling, neuropathy, allergies, or
psychiatric indications also increase risk of falls.
(Mintzer, 2000)
• Check for over-the-counter medications
Anti-Cholinergic Side Effects
PATIENT
Urinary
retention,
constipation
Source: Mintzer, 2000
Confused,
nervous,
restless,
irritable
Dizzy,
drowsy,
nightmares
Dry mouth,
impaired
vision
Common Agents
Anti-diarrheals
Antihistamines
Antipsychotic
Muscle relaxants
Cardiovascular Health
Mobility impairments increase
risk for cardiovascular
disease (CVD)
• Increased risk for thrombosis
• Decreased cardiac reserve
Other CVD risk factors
• Increased rates of obesity,
smoking, stress, poor nutrition
Gastrointestinal and
Urinary Tract Considerations
Gastrointestinal
– Dysphagia
– GE Reflux
– Constipation
Urinary Tract
(Link to Part 3, Module 5)
– Incontinence
– Urinary tract infections
Diet and Dental Health
• Revisit diets –
– Calories
– Sodium
– Fiber
– Food consistency
• Increased oral health and dental
considerations
Other Age Related Issues
• Decreased skeletal muscle
mass – Increased risk of falls
and reduced independence
• Decreased chest muscle
strength - compromised
pulmonary function
• Atrophic changes in skin –
increased skin breakdown (Link
Part 2, Module 2)
• Increased sexual dysfunction
(LINK Part 1,Mod 2)
Osteoporosis Risk for WWD
• Decreased weight-bearing accelerates
bone loss
• Anticonvulsant drugs and prolonged
use of DMPA increase risk
• Down Syndrome an independent
predictor of low bone mass (Link Part 4, Module
2A)
• Other risk factors: low body mass index,
poor calcium/vitamin D intake, and
smoking (link Part 3 Mod 5 and Part 1 Mod 3)
Screening for Osteoporosis
• Many WWD have never been
advised to undergo bone density
assessment
• Accessibility of screening sites
• Congruence of peripheral site Bone
Mass Density (BMD) measures with
gold standard hip and spine
assessments needs to be
established
• Calcaneal DEXA and ultrasound are
screening options
Prevention/ Early diagnosis of
Osteoporosis
• Begin prevention early in
life
• Calcium and vitamin D
supplementation
recommended at a
minimum
• Passive and active
physical activity
Low Bone Density Treatment for
Premenopausal Women
• Bisphosphonate use with premenopausal
women not established
– Unknown effect in child bearing
• Parathyroid hormone
• If low BMI, treat with weight gain
• Combined OCP’s may be beneficial
Risk of Fracture
• Women at increased risk for falls with low
BMD at great risk for fractures.
– Assess the home and life situation to decrease
risk of falls
• Both osteopenia and osteoporosis imply
risk
• Decreasing BMD, increasing age
and prior fracture contribute
independently to increased fracture risk
Source: Pasco, 2006
Summary
Aging and Osteoporosis
• Aging affects disability process and
disability affects processes of aging
• Chronic and degenerative conditions
increase in severity with aging
• Polypharmacy frequent
• Consider prevention and treatment of low
bone density at earlier age
Case Study - Margaret
• Osteoporosis risks – frequent use of steroids,
increasing immobility
• Considerations for treatment of osteoporosis
•Suggestions for arm and
shoulder pain
• Medications and suggestions for
improving sexual encounters
Disability-Specific
Effects of Aging
See Part 4
References
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
Schrager,S. Osteoporosis in women with disabilities. J Women’s Health, 2004;13;4;431-7.
Dormire S, Becker H. Menopause health secision support for women with physical disabilities. JOGNN 2007;36:97-104.
Ray JG, Papaioannou A, Joannidis G, Adachi JD. Anticonvulsant drug use and low bone mass in adults with neurodevelopmental disorders. QJM 2002;
95;4;219-23
Dantrolene official FDA informaiton, side effects and uses. 2006. Downloaded from: http://www.drugs.com/pro/dantrolene.html on 12/22/08
Mintzer J, Burns A .Anticholinergic side-effects of drugs in elderly people. JR Soc Med. 2000;93:457-462
Hughes SG. Prescribing for the elderly patient: why do we need to exercise caution? Br J Clin Pharmacol. 1998;46:531-33
Shabas D, Weinreb H. Preventive healthcare in women with multiple sclerosis. J of Women’s Health 2000;9:389-95
Welner SL, Simon JA, Welner B. Maximizing health in menopausal women with disabilities. Menopause 2002;9:208-19
National Center for Health Statistics. Healthy People 2000 review. Charting special populations:disability related objectives. 1997;Hyattsville, MD.
National Center for Health Statistics, US Dept. of Health and Human Services.
Fitzpatrick IA. Secondary causes of osteoporosis. Mayo Clin Proc 2002;77:453-68
SeltzerGB, Schupf N, Wu HS. A prospective study of menopause in women with Down’s syndrome. Journal o f Intellectual Disability Research.
2001;45:1-7.
Smeltzer, S Zimmerman,V, Capriotti,T. Osteoporosis risk and low bone mineral density in women with physical disabilities. Arch Phys Med Rehab 2005;
86 : 582-6
Smeltzer SC, Zimmerman VL. Usefulness of the SCORE Index as a predictor of osteoporosis in women with disabilities. Orthopaedic Nursing
2005;24:33-9
Albanese A, Hopper NW. Supression of menstruation in adolescents with severe learning disabilities. Arch Dis Child 2007;92:629-32.
Weiss D. Osteoporosis and spinal cord injury. Emedicine 2008. downloaded from http://emedicine.com/pmr/topic96.htm on 8/1/08.
Schrager S. Osteoporosis in women with disabilities. J Womens Health 2004;13:431-7.
Brown, A A, Murphy, L. Aging with Developmental Disabilities: Women's Health Issues Rehabilitation Research and Training Center on Aging with
Mental Retardation, University of Illinois at Chicago, Chicago, Illinois
Living and aging with a developmental disability: Perspectives of individuals, family members, and service providers. Salvatori P, Tremblay M,
Tryssenaar J. Journal on Developmental Disabilities. 2003;10. Accessed at
http://www.oadd.org/publications/journal/issues/vol10no1/download/salvatori_etal.pdf
Klingbeil, H, Baer HR, Wilson PE. Aging with a disability. Arch Phys Med Rehab. 2004: 85 Supp 3: 68-73.
Seltzer, MM, Larson BA, Makuch RL, Krauss, MW, Robinson D. Unanticipated lives: Aging families of adults with mental retardation: The impact of
lifelong caregiving. 2000. Brandeis University and University of WI – Madison. Accessed at http://www.waisman.wisc.edu/family/pdf/family-report01.pdf
on July 14, 2008.
Pasco JA , Seeman E, Henry MJ, Merriman EN, Nicholson GC, Kotowicz MA. The population burden of fractures originates in women with osteopenia,
not osteoporosis. Osteoporosis International 2006;17:1404-9.