Part IIIMedical and Reproductive

Considerations

Module 1Contraception

ContraceptionCase 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

Source: Beckman 1989

Onset of disability

WWD often do not get appropriate contraception information

Contraception information was

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 ConsiderationsWhen 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 PhenytoinTopiramateVigabatrin

Anticonvulsants that do NOT decrease efficacy of OCPs

Ethosuximide Tiagabine Gabapentin Valproic acid* Lamotrigine Zonisamide Levetiracetam

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

manageAmenorrhea 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

ImplantsEtonogestrel (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 Consentfor 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/reproductive-health/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

References1. Beckmann CR, Gittler M, Barzansky BM, Beckmann CA. Gynecologic health care of women

with disabilities. Obstet Gynecol. 1989;74:75-9.2. 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

3. American College of Obstetricians and Gynecologists. Practice Bulletin #73. Use of hormonal contraception in women with coexisting medical conditions. 2006. ACOG. Washington DC

4. 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

5. Sciat BL. OrthoEvra, a new contraceptive patch. Pharmacotherapy 2003;23:472-80.6. Dantrolene official FDA informaiton, side effects and uses. 2006. Downloaded from:

http://www.drugs.com/pro/dantrolene.html on 12/22/087. Boggs JG. Women’s Heallth and Epilepsy. eMedicine Neurology 2008. Downloaded form

http://emedicine.medscape,com/article/1186482 on 4/8/09.8. Mattson RH, Cramer JA, Darney PD, Naftolin F. Use of oral contraceptives by women with

epilepsy. JAMA 1986;256:238-40.9. Back DJ, Orme ML. Pharmacokinetic drug interactions with oral contraceptives. Clin

Pharmacokinet 1990;18:472-84.

References, Con’t10. Center for Communication Programs. Oral Contraceptives – an Update. Population Reports

4.3, Series A, Number 9. 2000. Baltimore MD. 11. Koren G, Nava-Ocampo AA, Moretti ME, Sussman R, Nulman I. Major malformations with

valproic acid. Canadian Family Physician 2005;52:441-7.12. Progestin-Only oral contraceptives: An update. The Contraception Report 1999;10(4):4-813. World Health Organization. Medical Eligibility Criteria for Contraceptive Use, Third ed..

Geneva: World Health Organization; 2004 14. 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

15. Depot medroxyprogesterone acetate and bone effects. ACOG Committee Opinion No 415. American College of Obstetricians and Gynecologists. Obstet Gynecol 2008;112:727-30.

16. 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.

17. Implanon Professional Information. Drugs.com. Downloaded from http://www.drugs.com/pro/implanon.html on 5/22/08.

18. Department of Reproductive Health and Research, World Health Organization. Family Planning: A Global Handbook for Providers.2007 pg. 173

19. 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

ph

ysical need

s

Increased

social

con

cerns

Increased

med

ical con

cerns

Assessing Menstrual Concerns

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

Medical Management - AUBTreatment Advantages Disability Concern

NSAIDS Decreases flowNon-hormonal

Gastric distress

Combined oral contraceptive

Decreases flow Immobility, Daily reminders

Contraceptive Patch Weekly ImmobilityPatients with IDD may pull it off

Contraceptive Ring Monthly May be difficult to place Patients with IDD may remove

Progesterone only pill Daily Daily reminders

DMPA 4 times yearly Risk of low bone density with prolonged use. Weight gain interferes with transfers

Progesterone containing IUD

5 years Insertion issues

Implants 3 years` Irregular bleeding, insertion issues

Source: ACOG Committee Opinion 2009 in print

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 ConsiderationsPresenting problems:• Catamenial seizures • Menstrual hygiene needs• Menorhagia

Findings:• Pelvic exam and ultrasound normal• Hgb 11.5

Your suggestions?

Menses Management and AUBSummary

• 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

Societal pressure not to conceiveEffect

of p

regn

ancy

on

disa

bility

Effect of the disability on pregnancy, labor and delivery

Pregnancy Planning for WWD

Issues to explore 1. Genetic counseling

2. Pregnancy-Disability interactions

3. Prevention of obstetric complications

4. 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 - Phenytoin - D– Carbamezepine – D - Phenobarbital - D– Lamotrigine – C

• 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 C-

section (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 statusSource: 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 CarrierAdaptive 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 askus@marchofdimes.com 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 4Urinary 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 DiscussionBladder 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-Managing-Common-Complications-Wo-Women-Disabilities-preventingandmanagingcommoncomplicationsinwomenwith-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

Weight, Diet and Physical Activity

Module 5

Case Study- Weight 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 analyzerwww.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

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 TimePhysical Activity: Adults

U.S. Department of Health and Human Services. Healthy People 2010: Understanding and Improving Health. 2nd ed., 2000.

• 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

Physical Activity for WWD

                                     

Source: National Center on Physical Activity and Disability http://www.ncpad.org/

Pedometers Track More Than Walking

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 6Adolescents 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

*P<0.05; ** P<0.01; *** P<0.001, compared to controls Source: Blum, 2006

Factors ControlsN = 15,689

Mobility Impaired

N = 167

Learning Disabled

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%***

Non-heterosexual

5.3% 11.3%** 6.7%*

Substance Use by Adolescents with Disabilities, Ages 18-21Substance use reported during past 30 days

Substance General population

Teens with disabilities

Alcohol Use Never 44% 54% > 2 Drinks in past 30 days 35% 22%Tobacco Use Never 64% 70% Used every day 24% 20%Illegal Drug Use Marijuana use 27% 16% Any drug use 28% 17%Source: Yu 2008

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 = 24,105Disability severity index is set on a functional, self and parent defined scale at the time of the surveySource: 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 Knowledge

Assess ability to consent

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, non-permanent.

• Best options– Antiprostaglandin drugs – NSAIDs– Combined oral contraceptives– Continuous oral progestins– DMPA– Levonorgestrel IUD

• Usually not appropriate– Endometrial ablation– Hysterectomy

Considerations for Care – Separation From Family

Addr

ess

teen

dire

ctly

Examine w

ithout parent

Encourage expression of fears and concerns

Taking A History

Include:

3 C’s and 3 S’sConfidential Sexual Knowledge

Contraception Safety

Coercion 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)

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.

Dispelling Myths of Adolescents with Disabilities

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

References - Adolescents1. 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

2. Cheng MM, Udry JR. Sexual behaviors of physically disabled adolescents in the United States. Journal of Adolescent Health 2002;31:48-58

3. 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

4. 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

5. 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.

6. Elkins TE. Providing gynecologic care for women with mental retardation. Med Asp Hem Sex. June, 1991;56-62.

7. 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

8. ACOG. Cervical Cancer Screening in Adolescents, Committee Opinion #300, American College of Obstetricians and Gynecologists. October 200

Resources for Adolescents1. 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-and-medical-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 ImpairmentIncreased incidence of conditions associated with age

Diabetes – decreased

vision, amputation

Aging Contributes to Decreased Self Care Management

Age related degenerative disabilities impact self care and care of secondary conditions

Vision 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

Confused,Confused, nervousnervous, , restless,restless, irritableirritable

Common AgentsAnti-diarrhealsAntihistaminesAntipsychotic

Muscle relaxants

PATIENTPATIENT

Source: Mintzer, 2000

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

• 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

Risk of Fracture

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.