Transcript Part III
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 3 rd 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 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 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/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
References
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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: 19 th 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
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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
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 NSAIDS Combined oral contraceptive Contraceptive Patch Contraceptive Ring Progesterone only pill DMPA Progesterone containing IUD Implants Advantages
Decreases flow Non-hormonal Decreases flow Weekly Monthly 5 years Immobility, Daily reminders Immobility Patients with IDD may pull it off May be difficult to place Patients with IDD may remove Daily reminders Risk of low bone density with prolonged use. Weight gain interferes with transfers Insertion issues 3 years`
Disability Concern
Gastric distress 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 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. 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 – 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 2 nd include: trimester to – 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 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 62 nd 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: stones Cystitis and bladder • 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-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
Module 5
Weight, Diet and Physical Activity
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 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
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
Welfare status
Controls
N = 15,689 9.5%
Mobility Impaired
N = 167 20.0%***
Learning Disabled
N = 1301 17.1%*** Repeated a grade Appears old for age Sexually experienced Non heterosexual 18.2% 12.1% 36.9% 5.3% 34%*** 13.8%*** 45.7%*** 11.3%** 49.6%*** 11.5%*** 38.5%*** 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 General population Teens with disabilities
Alcohol Use Never > 2 Drinks in past 30 days Tobacco Use Never Used every day Illegal Drug Use Marijuana use Any drug use 44% 35% 64% 24% 27% 28% 54% 22% 70% 20% 16% 17% Source: Yu 2008
Sexuality in Adolescent Girls With and Without Disabilities
Girls’ Experiences at Age 16 by Physical Disability Status Physical Disability Status
No disability Minimal disability Mild disability Severe disability
Never Had Sex All Consensual Been Forced
66.3% 48.2% 63.7% 57.9% 27.7% 40.9% 23.4% 31.0% 6.0% 10.9% 12.9% 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, 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
Encourage expression of fears and concerns
Taking A History
Include:
3 C’s
C onfidential C ontraception C oercion and
3 S’s
S exual Knowledge S afety S ubstance 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
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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-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 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 Confused, nervous , restless, irritable Dizzy, drowsy, nightmares Dry mouth, impaired vision Source: Mintzer, 2000
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
Gastrointestin al – 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.