Part IV Reproductive Health Specific to Disability
Module 1 - Physical Disabilities Spinal cord injury Cerebral palsy Spina bifida Multiple sclerosis
Sub-Module 1 Spinal Cord Injury (SCI)
Objectives Spinal Cord Injury - SCI Upon completion of this module, the participant will be able to: • Recognize the specific interaction of menses, sexuality and menopause in women with spinal cord injury. • Describe the onset, symptoms and management of autonomic dysreflexia (ADR) • Describe considerations involving pregnancy, labor, delivery and postpartum for women with SCI • Identify specific resources available for the patient with SCI and her provider.
Suzanne
About SCI Neurological levels – • sensation tested at each dermatome • strength of 10 key muscles Classification of injury- • complete spinal cord injury • Incomplete spinal cord injury
Segmental Spinal Cord Level and Function Level Function C 1 -C 6 Neck flexors C 1 -T 1 C 3 -C 5 Neck extensors Supply diaphragm (mostly C 4) C 5 -C 6 Shoulder movement, raise arm, flex elbow, supinates arm C 6 -C 7 Extends elbow and wrist, pronates wrist Flexes wrist, supply small muscles of the hand Intercostals and trunk above waist Abdominal muscles Thigh, hip muscles, Hamstrings and dorsiflexion of foot Plantar flexion of foot and toe movement C 7 -T 1 T 1 -T 6 T 7 -L 1 L 1 -L 4 L 4 -S 1 L 4 -S 2 Source: Wikipedia, 2008
About Autonomic Dysreflexia • Autonomic dysreflexia (ADR) is the most important ob/gyn concern for women with spinal cord lesions • Spinal cord lesions at or above T 6 segment – 50% incidence of ADR • Causes severe hypertension • Potentially lethal medical emergency
Precipitating Factors of ADR • • • Bladder or bowel distention or irritation Cutaneous lesions Menstruation Sexual activity Pelvic and rectal exams Labor
Signs and Symptoms of ADR • Hypertension – Baseline BP in SCI 90/60 – 120/80 may be abnormally high – BP can reach 300/220 • Piloerection • Flushing • • Pounding headache Sweating Nasal congestion Malaise Skin tingling Nausea Blurred vision Cardiac dysrhythmia
Management of ADR During GYN Examinations Prevention is key Removal of stimulus/cessation of exam Assist patient to upright position Frequent BP monitoring Loosen clothing Check bladder/rectum Administer rapid-onset, short-acting antihypertensive (e. g. nifedipine, nitrate paste)
Menstruation after SCI • Usually stop menstruation up to 6 months following injury, most return to cycling • Increased incidence of prolonged amenorrhea • Increased autonomic symptoms during menses • Premenstrual dysphoric disorder (PMDD) symptoms continued after SCI
Sexual Activity • Women with SCI can have active and enjoyable sex lives post injury. • Lubrication is dependent on level and completeness of injury. • Orgasm may be independent of the level of injury LINK Part 1 Module 2
Pregnancy and Spinal Cord Injury
Data on Pregnancy and Spinal Cord Injury (SCI) • No studies investigating fertility and pregnancy after SCI • Case-reports and expert opinion inform obstetric management of pregnancy
Pregnancy Complications for Women with SCI Urinary tract infections Deep vein thrombosis Increased spasticity Decubitus ulcers Alterations in pulmonary function Constipation
Prevention of Pregnancy Complications • Monitor ability to transfer and ambulate • Monitor weight gain closely • Leg elevation • Range of motion exercises • Monitor need for increased services
ADR and Pregnancy/Labor Prevention – Avoid distended bladder – Avoid constipation/fecal impaction – Discuss past episodes of ADR and triggers – Discuss measures to relieve ADR Link to ADR section (slides 8 -11)
ADR v. Preeclampsia ADR Preeclampsia Clonus, edema Acute onset Variable onset BP increased during contractions BP consistently elevated Bradycardia Tachycardia Proteinuria absent Proteinuria Normal labs Abnormal labs Intense flushing, gooseflesh, diaphoresis common Not prominent Source: Pereira 2003
Labor and Delivery • Instruct patient in uterine palpation and unique symptoms of labor • Judicious use of early labor regional anesthesia for sympathetic blockade • Monitor closely for ADR symptoms • Increased incidence of operative vaginal delivery
Postpartum Care Spinal Cord Injury • Inspect perineum for signs of infection. Use ice packs with care. • Watch closely for postural hypotension • Assist with breast feeding, particularly if low nipple sensation (link to Part III- Mod 3 breastfeeding) • Monitor for breast health
Osteoporosis and SCI • Rapid bone loss of 25 -50% in lower extremities occurs immediately post-injury. • Spasticity with consequent bone tension leads to additional bone loss. • Over 90% of postmenopausal women have osteoporosis on screening exams • Treatment should be used, but the safety of bisphophonates in women with reproductive potential is still unclear. Link Part 3 – Module 7
Other Medical Risks with SCI Decubitus ulcers (Link – Part 2 Module 2) Rapid weight loss post injury (Link Part 3 -Module 5) Superior Mesenteric Artery Syndrome Renal and bladder stones Cholithiasis
Case Study • Considerations when prescribing contraception • Precautions during pelvic examination • Other components of well woman care
Summary SCI • The most important OB/GYN concern of SCI is ADR • Temporary amenorhea is common after acute SCI • Intrapartum care with SCI should be managed by a multidiciplinary team. • Early regional anesthesia is usually advised for labor management • Low bone density is common
References – Spinal Cord Injury • • • De. Forge D, Blackmer J, Moher D, et al. Sexuality and Reproductive Health Following Spinal Cord Injury. Summary. Evidence Report/Technology Assessment: Number 109. AHRQ Publication No 05 -E 003 -1, December 2004. Agency for Healthcare Research and Quality. Rockville MD. Downloaded from http: //www. ahrq. gov/clinci/epcsums/sexlspsum. htm. on 8/8/08. American Spinal Cord Injury Association. Standard Neurological Classification Of Spinal Cord Injury. 2006. Downloaded from http: //www. asia-spinalinjury. org/publications/2006_Classif_worksheet. pdf on 12/5/08 Wikipedia – Spinal cord injury, . Downloaded from http: //en. wikipedia. org/wiki/Spinal_cord_injury on 12/17/08 Campagnolo DI. Autonomic dysreflexia in spinal cord injury. 2006. Downloaded from http: //emedicine. medscape. com/article/322809 on 12/17/08 Jackson AB, Wadley V. A multicenter study of women’s “self-reported reproductive health after spinal cord injury. Arch Phys Med and Rehab 1999; 80: 1420 -8. Jackson AB. Medical management of women with spinal cord injury: A review. Topics in Spinal Cord Inj Rehabil 1995; 1: 11 -26. Research Review, Fall 2000 Published by UAB-RRTC on Secondary Condition of SCI, Birmingham, AL. Sownloaded from http: //www. spinalcord. uab. edu/show. asp? durki=3237 on 8/7/08 Whiple B. Sexual response in women with complete spinal cord injury. . Symposium at INABIS ’ 98. Mc. Master University. Downloaded from http: //www. mcmaster. ca/inabis 98/komisaruk/whipple 0437/tow. html. On 8/11/08 Sipski ML. Sildenafil effects on sexual and cardiovascular responses in women with spinal cord injury. Urology 2000; 55(6): 812 -815 Jackson A, Lindsey L, Llebine P, Poczatek R. Reproductive health for women with spinal cord injury. SCI Nursing 2004; 21: 88 -91. American College of Obstetrics and Gynecology. Committee Opinion #275 – Obstetric Management of Patients with Spinal Cord Injuries 2002; ACOG, Washingto n DC.
References SCI • • • • Pope CS, Markenson GR, Bayer-Zwirello LA, Maissel GS. Pregnancy complicated by chronic spinal cord injury and history of autonomic hyperreflexia. Obstet. & Gyne. 2002; 97: 802 -3 Pereira L. Obstetric management of the patient with spinal cord injury. Obstetrical and Gynecological Survey 2003; 58: 67886 Estores IM, Sipski ML. Women’s issues after SCI. Topics in Spinal Cord Injury Rehabilitation 2004; 10: 107 -25 Pentland W, Walker J, Minnes P, Tremblay M, Brouwer B, Gould M. Women with spinal cord injury and the impact of aging. Spinal Cord 2002; 40: 374 -387 Weiss D. Osteoporosis and spinal cord injury. e. Medicine Specialties 2008. downloaded from www. emedicine. com/pmr/topic 96. htm. on 8/1/08 Jiang SD, Jiang LS, Dai LY. Management of osteoporosis in spinal cord injury. Clinical Endocrinology 2006; 65: 555 -65. Vestergaard P, Krogh K, Rejnmark L, Mosekilde L. Fracture rates and risk factors for fractures in patients with spinal cord injury. Spinal Cord 1998; 36: 790 -6. Smeltzer, S Zimmerman, V, and Capriotti, T. 2005 Arch Phys Med Rehab 86 (3); 582 -6. Physicians Desk reference (Bisphosphates) Ornoy A. Wajnberg R. Diav-Citrin O. The outcome of pregnancy following pre-pregnancy or early pregnancy alendronate treatment. Reproductive Toxicology. 2006; 22: 578 -9 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. Massagli TL, Reyes MR. Hypercalcemia and spinal cord injury. 2008. Downloaded from http: //emedicine. medscape. com/article/322109 on 12/18/09 Moonka R, Stiens SA, Resnick WJ, Mc. Donald JM, Eubank WB, Dominitz, JA, Steizner, MG. The prevalence and natural history of gallstones in spinal cord injured patients. J AM Coll Surg. 1999; 189: 274 -81
Spina Bifida Sub-Module 2 Spina Bifida
Objectives Spina Bifida • Recognize the specific interaction of menses, sexuality and menopause in women with spina bifida • Describe considerations involving pregnancy, labor, delivery and postpartum. • Identify specific resources available for the woman with spina bifida and her provider.
Spina Bifida – Case Study • Desires pregnancy • Spina bifida lesion at T 8 • VP Shunt • Ileal conduit
Medical Concerns in Women With Spina Bifida GI Orthopedic Neurologic Dermatologic Source: Suzawa, 2006 Urologic
Neurologic Complications • Hydrocephalus – VP Shunt • Most have normal intelligence • Most individuals with SB have strong verbal skills but have difficulties with attention and executive functioning.
Urologic and GI Complications Urologic • Neurogenic bladder GI • Constipation • Fecal incontinence • Obesity
Orthopedic Complications Impaired mobility increasing with age Overuse syndromes Contractures Osteoarthritis Spasticity Spinal deformities: kyphosis and scoliosis
Dermatologic • Severe latex allergy in 75% – Unknown etiology – Latex in many medical, clothing and household items • Pressure ulcers – Frequent skin examination (link to Part 2 -Mod 2 skin) – Encourage frequent weight shifts
Pregnancy Preparation • Fertility is not impaired • Genetic Counseling • Risk of neural tube defect in offspring – Depends on frequency of occurrence within the family. – Small risk of affected pregnancy despite folic acid prophylaxis
Pregnancy Considerations • Bladder and urinary tract – Special care after urinary diversion surgery – Increased frequency of UTI • VP Shunt failure • Increased risk of back pain due to spinal abnormalities (Link -– Mod 1)
Aging and Osteoporosis • Kyphosis and scoliosis increase with age – Compromise respiratory status – Complicate positioning for exams and the interpretation of bone densitometry. • Osteoporosis can occur in childhood and persist into adult years.
Summary • Impaired executive functioning • Bladder and bowel incontinence • VP shunt may affect pregnancy, delivery and GYN surgery. • Genetic counseling and folic acid • Increased risk of osteoporosis due to onset of immobility at birth
Case Study – Spina Bifida 1. What more information do you need from Jennifer regarding her history? 2. What considerations are important for Jennifer prior to her pregnancy? 3. What are 3 issues related to her spina bifida that may be of concern during Jennifer’s pregnancy? 4. What considerations are necessary to prepare for Jennifer’s delivery?
Resources • Spina Bifida Association – Information and publications for providers and public. This includes the books featured below. Access at www. spinabifidaassociation. org
References • • • Hochber L and Stone J. Etiology, prenatal diagnosis, and prevention of neural tube defects. Up to Date. 2006 American College of Obstetricians and Gynecologists. Neural tube defects. Practice Bulletin #44 ACOG 2003. Washington DC Bowman RM, Mc. Lone DG, Grant JA, Tomita T, Ito JA. Spina bifida outcome: a 25 -year prospective. Pediatric Neurosurg 2001; 34: 144 -20. Velde SV, Biervliet SV, Renterghem KV, Laecke EV, Hoebeke P, Winckel MV. Achieving Fecal Continence in Patients With Spina Bifida: A Descriptive Cohort Study. Journal of Urology. 2007 Suzawa, H. Spina Bifida (powerpoint presentation. 2006. Downloaded from http: //www. bcm. edu/medpeds/powerpoints/Spina%20 Bifida. pps#257, 3, Epidemiology on 8/13/08 Rose BM, Holmbeck GN. Attention and executive functions in adolescents with spina bifida. J of Ped Psych 2007; 32: 983 -94. Liptak GSEvidence –based practice in spina bifida: Developing a research agenda. Presentation at the conference May 2003. Washington DC. Downloaded from http: //www. spinabifidaassociation. org on 8/13/2008. Klingbeil H, Baer HR, Wilson PE. Aging with a disability. Arch Phys Med Rehabil 2004; 85(Suppl 3) S 68 -73 Singhal B, Mathew KM. Factors affecting mortality and morbidity in adults spina bifida. Eur J Pediatric Surg. 1999: 9(Suppl 1): 31 -2. Levy E. Addressing sexuality in spina bifida. Pediatric News in Entrepreneur. com. Downloaded from http: //www. entrepreneur. com/tradejournals/article/print/168434757. html on 8/14/08 Vogel LC, Krajci KA, Anderson CJ. Adults with pediatric-onset spinal cord injury: part 2: musculoskeletal and neurological complications. J Spinal Cord Med 2002; 25: 117 -23 Arata M, Grover S, Dunne K, Bryan D. Pregnancy outcome and complications in women with spina bifida. J Reprod Med 2000; 45: 743 -748.
Sub-Module 3 Multiple Sclerosis
Objectives - Multiple Sclerosis • Recognize the specific interaction of menses, sexuality and menopause for women with MS • Describe considerations involving pregnancy, labor, delivery and postpartum. • Identify specific resources available for the woman with MS and their provider.
Case Study – Multiple Sclerosis (MS) • 38 years old • Decreased libido • Fatigue • Lack of lubrication • Decreased sensation
Presenting Symptoms of MS • Optic neuritis • Extreme fatigue • Paresthesias • Spasticity • Lower extremity weakness • Loss of coordination • Pain • Acute onset of bowel and bladder dysfunction
GYN Considerations • Possible worsening of neurologic symptoms with menses (self-report) • 40 -80% of women report sexual dysfunction • Fatigue commonly contributes to sexual dysfunction • Depression may be associated with CNS changes. • Smoking may increase disease progression
The Effect of Pregnancy on MS • No change in fertility • Symptoms of MS may stabilize or remit during pregnancy with 20 -40% of patients having relapse within 3 months after delivery. • No evidence suggests that pregnancy affects long-term course of MS • Increased risk for child having MS (2. 5 X)
Drug Therapy Used for MS and Pregnancy Category Drug Cat Interferon Beta-1 a and 1 b Glatiramer acetate C Cyclophosphamide D B Azathioprine D Mitoxantrone D Corticosteroids Methotrexate X Baclofen B-C C
MS – Labor and Delivery • Patient may not recognize labor onset • Epidural anesthesia does not increase relapse rate and is effective for treating labor-induced spasticity • Weakened maternal expulsive effort may be indication for operative vaginal delivery
MS- Postpartum Breastfeeding encouraged, if no DMA is needed Watch closely for perinatal and postpartum depression Flareup/relapse often occurs within 3 months postpartum
MS -Osteoporosis • Frequent use of steroids and immunosuppressants increases risk • Low- trauma fracture rate as high as 22% • More than half (53. 7%) of postmenopausal women with MS were found to have low BMD on screening (Smeltzer 2005)
MS - Aging • Older individuals diagnosed have more progressive MS • Overlapping symptoms of MS and aging • More risk of UTI, pneumonia, septicemia and cellulitis • Decrease in cognition due to disease
Summary: Multiple Sclerosis • Neurological symptoms may worsen in the premenstrual period • Fertility and menstruation are not altered • Pregnancy and MS: – Symptoms may stabilize or remit during pregnancy, relapse after delivery is common – Overall no long term effect on disease course • Increased risk of steroid related osteoporosis
Case Study – Multiple Sclerosis • Additional Information needed? • Recommendations
Resource • National Multiple Sclerosis Society http: //www. nationalmssociety. org/index. as px
References - MS • • • Benedetto-Anzai MT. Obstetric and gynecological management of women with multiple sclerosis. Presentation at ACOG Annual Clinical Meeting 2005, San Francisco Multiple Sclerosis Society. What is Multiple Sclerosis. Downloaded from http: //www. nationalmssociety. org/about-multiple-sclerosis/what-is-ms/index. aspx on 8/13/08 Shabas D, Weinreb H. Preventive healthcare in women with multiple sclerosis. J Women’s Health & Gender-Based Med 2000; 9: 389 -95 Foley FW. Clinical Bulletin: Assessment and treatmetn of sexual dysfunction in multiple sclerosis. National Multiple Sclerosis Society 2008. Downloaded from http: //www. nationalmssociety. org/about-multiple-sclerosis/symptoms/sexualdysfunction/index. aspx on 8/14/08 Somers EC. Marder W. Christman GM. Ognenovski V. Mc. Cune WJ. Use of a gonadotropinreleasing hormone analog for protection against premature ovarian failure during cyclophosphamide therapy in women with severe lupus. Arthritis & Rheumatism. 52(9): 2761 -7 Confavreaux C, Hutchinson M, Hours MM, et al. Rate of pregnancy related relapse in MS. NEJM 1998; 339: 285 -91 Damek D, Shuster E. Pregnancy and MS. Mayo Clinic Proc 1997; 72: 977 -1009 Giesser B. Reproductive issues in persons with multiple sclerosis. Clinical Bulle tin Information for Health Professionals. National Multiple Sclerosis Society 2003. Downloaded from www. nationalmssociety. org/PRC. asp. on 8/18/08 Freedman MS. Is spinal anesthesia contraindicated for patients with MS? Medscape: Ask the experts about Multiple Sclerosis/Neuroimmunology 20002. At http: // www. medscape. com/viewarticle/442083 accessed 1/26/07. Dilorenzo TA, Halper J, Picone MA. A comparison of older and younger individuals with multiple sclerosis: A preliminary investigation. Rehabilitation Psychology 2004; 49: 123 -5.
MS- References Con’t. • • • Di. Lorenzo TA. Aging with Multiple Sclerosis Clinical Bulletin. National Multiple Sclerosis Society 2006. Downloaded from http: //www. nationalmssociety. org/for-professionals/healthcareprofessionals/publications/clinical-bulletins/download. aspx? id=167 on 8/22/08 Stern, M. Aging with multiple sclerosis. Physical Medicine and Rehabilitation Clinics of North America 2005: 16: 219 -34 Fleming ST, Blake RL. Patterns of comorbidity in elderly patients with multiple sclerosis. Journal of Clinical Epidemiology 1994; 47: 1127 -32 Kneebone, II, Dunmore EC, Evans E. Symptoms of depression in older adults with multiple sclerosis: Comparison with a matched sample of yournger adults. Aging and Mental Health 2003; 7: 182 -5. Schwid SR, Goodman JE, Puzas, Mc. Dermott MP, Mattson DH. Sproadic corticosteroid pulses and osteoproosis in multiple sclerosis. Archives of Neurology 1996; 53: 753 -7. downloaded from http: //archneur. ama-assn. org/cgi/content/abstract/53/8/753 on 8/21/08 Smeltzer, S Zimmerman, V, and Capriotti, T. Osteoporosis risk and low bone mineral density in women with physical disabilities. Arch Phys Med Rehab 2005; 86 : 582 -6.
Sub-Module 4 Cerebral Palsy www. ucp. org/uploads/Heather%20 Dibblee%2007. jpg
Objectives – Cerebral Palsy • Recognize the specific interaction of menses, sexuality and menopause in women with cerebral palsy • Describe considerations involving pregnancy, labor, delivery and postpartum. • Identify specific resources available for the woman with cerebral palsy and their provider.
Case Study – Cerebral Palsy • 40 years old • CP with speech and cognitive impairment • Spasticity and some contractures
Characteristics of Cerebral Palsy (CP) • Disorder of motor function arising from insult or injury to the developing brain • Characterized by abnormal muscle tone, deep tendon reflexes, and posture • Variable degree of cognitive and communicative impairment • Seizure disorder present in 30% • Vision and hearing centers may be involved • Growing number of adults with CP
Health Status of Women with CP Health behaviors, high majority • Non-smoker, Non-drinker • Participate in some physical activity Associated conditions: • • Cognitive impairment (33%), Learning disabilities (25%) Seizure disorders (40%) Pain ( 84%) Secondary conditions: • Pain, hip and back deformities • Bowel and bladder problems • Poor dental health, GE reflux Source: Turk 1997
CP - Reproductive Health Issues • Increased spasticity and incontinence during menstruation reported • Seizure medications may interfere with contraception methods – (Link Part 3 -Mod 1) • Pain and contractures may affect sexuality • Contractures and deformities may require adaptive measures for mammograms (link Part 2 Mod 2) and GYN examinations. (link Part 2 -Mod 1 ) • Developmentally appropriate sex and contraception education
CP-Pregnancy • Expected pregnancy changes: – mobility, pain – bladder and bowel control and function • Monitoring/adjustment of medications (Link Part 3 Module 3) • Influence of contractures and spasticity on positioning for exams, labor analgesia, and delivery (Link Part 2 -Module 1) • Mobilization of parenting supports • Pregnancy outcomes appear to be normal Link Part 3 - Module 3
CP –Osteoporosis • Osteoporosis at early age, due to non-use of bones • Increased non-traumatic fractures • Use of upright or semi-prone standing in young adults may improve some bone mineral density. • Treatment considerations (Link Part 3 -Module 7)
CP – Aging Increase in secondary conditions due to aging Bladder and bowel dysfunction Oral motor and GE reflux problems require dietary adjustment Increased risk for bone, muscle and joint diseases due to prolonged spasticity Chronic pain Decreased ability to ambulate due to fatigue and gait inefficiency (Link to Part 3 – Module 7)
Case Study – Cerebral Palsy • What more information do you need? • What will assist your examination? • What preventive health measures are needed?
Summary – Cerebral Palsy • Symptoms of irregular muscle tone and reflexes. usually associated with spasticity. • Increased symptoms during menstruation. • Chronic pain • Examinations can be facilitated by alternative positioning and antispasmodics • Pregnancy planning will likely require medication adjustment • Osteoporosis at early age
References – Cerebral Palsy • • • Turk, MA, Geremski CA, Rosenbaum PF, Weber RJ. The health status of women with cerebral palsy. Arch of Physical Medicine and Rehabilitation 1997; 78 (Supp 5) S 10 -17 Poulos AE, Balandin S, Llewellyn G, Dew AH. Women with cerebral palsy and breast cancer screening by mammography. Archives of Physical Medicine and Rehabilitation 2006; 87: 304 -7. Smith RA, et al. American Cancer Society guidelines for breast cancer screening: update 2003. CA Cancer J Clin 2003; 53: 141 -69 Winch r, Bengtson L, Mc. Laughlin j, et al. Women with Cerebral Palsy: Obstetric experience and neonatal outcome. Developmental Medicine in Child Neurology. 1993; 35: 974 -82 Klingbeil, H. 2004 Arch Phys Med Rehab 85 (3); 68 -73. Caulton, J et al. 2004 Arch Dis Child 89; 2; 131 -5. Resource: United Cerebral Palsy Association http: //www. ucp. org/
Sub-Module 5 Other Physical Disabilities Osteogenesis Imperfecta Post-Polio Syndrome
Objectives – Other Physical Disabilities Following this sub-module the participant will be able to: • Identify some women’s health care implications of osteogenesis imperfecta and post-polio syndrome • Discuss women’s health care management strategies for those with osteogenesis imperfecta and post-polio syndrome • Identify resources and references on these disabilities for the provider and patient.
OI – Reproductive Health • • May experience heavy bleeding Fertility rate not influenced Genetic counseling Cesarean delivery may be recommended to reduce pelvic bone fracture and for diminished pelvic outlet • Anesthesia consult • Hernia prevention with permanent suture to close aponeurotic tissues
Post-Polio Syndrome (PPS) • Affects up to 50% of polio survivors years after recovery from an initial attack. • Symptoms: – increasing muscle weakness – fatigue – often pain. • Slowly progressive.
Post-Polio Syndrome (PPS) Women’s Health • Increased risk of osteoporosis (Link Part 3, Mod 7) • Accelerates physiological effects of menopause – Compounded muscle weakness leads to poor balance – Weakening chest wall leading to decreased pulmonary function – Atrophic changes in urinary tract leading to incontinence (link Part 3, Mod 4) – Joint stiffness and fatigue leading to sexual dysfunction (Link Part 1, Mod 2)
Resources/References Resources Osteogenesis Imperfecta Foundation –http: //www. oif. org Post-Polio Health International - http: //www. post-polio. org References • • • Osteogenesis Imperfecta Foundation. OI Issues: pregnancy. 2007. Accessed at http: //oif/org on 1/13/09. Robetts JM, Solomons CC. Management of pregnancy in Osteogenesis Imperfecta: New perspectives. Obstet and Gynecol 1975; 45: 168 -70 Vogel TM, Ratner EF, Thomas RC, Chitkara U. Pregnancy complicated by severe osteogenesis imperfecta: A report of two cases. Anesthesia and Analgesia 2002; 94: 1315 -17. March of Dimes. Post-Polio Syndrome Quick feference : Fact sheets. Downloaded from http: //www. marchofdimes. com/printable Articles/14332_1284. asp. on 2/10/09 Jubelt B, Agre JC. Characteristics and management of Postpolio Syndrome. JAMA 2000; 284: 41214 Welner SL, Simon JA, Welner B. Maximizing health in menopausal women with disabilities. Menopause 2002; 9: 208 -19
Module 2 Intellectual and Developmental Disabilities (IDD)
Case Study- IDD Sexual abuse Pregnancy Seizure medications Sex education Contraception
Objectives Intellectual and Developmental Disabilities After completing this module, the participant will be able to: • Identify special considerations in taking a history when working with women with IDD • Describe appropriate methods of providing sex education • Discuss how to gain cooperation of the woman with IDD during a GYN examination • Describe the impact of menstruation and surgical procedures for women with IDD • Discuss resolution for issues of informed consent for women with IDD
Definition - Intellectual and Developmental Disabilities Includes at least 3 of the following limitations: • Self care • Language • Learning • Self direction • Mobility • Independent living • Economic self-sufficiency Classified according to intelligence quotient 83 -52 Mild 51 -36 Moderate Below 36 Severe
Reproductive Care Issues History taking and education Physical examination Menstruation issues Contraception –(link to Part 3, Module 1) Pregnancy Informed consent Aging and osteoporosis
Issues Seeking Health Care Resistance to exams due to history of forced examinations causing Pain Anxiety Hostility
Establishing Communication • Establish face to face contact with nonhurried manner • Choose an environment with the fewest distractions • Use basic language and establish contact with the patient • Assess how the non-verbal patient communicates • Assess patient understanding
Taking A GYN History • Gain information first from patient and then from other means available. • Use menstrual and PMS calendars • Use drawings/photos/anatomic models to – assess level of body and sexual knowledge – assess level of sexual activity and possibly abuse – to explain GYN examination
Health Education • All women benefit from reproductive health education • Excellent resources are available: – Women Be Healthy – Let’s Talk About Health: What Every Woman Should Know
Consent and Sexual Relations No standard screening but the following understanding should be assessed: – That sex is an activity that both participants want and engage in voluntarily. – That no one can force or threaten you to have sex. – That you can refuse to engage in sexual activity with someone even if you have agreed to engage in it before with the same person, and that it is enough to just say "no" without having to provide justification for the refusal. – That sex is usually engaged in private – That it is not proper to have sex for money or gifts – That it is not proper to have sex with children, immediate blood relations or animals Adapted from : Griffiths (Ed) Ethical Dilemmas: Sexuality and Developmental Disability, 2002
Sexuality and Sex Education • Have same sexual needs as the general population • Parental and society uncomfortable with sexual needs and expression • Keep sex education simple and concrete with repetition and demonstrations. • Teach avoidance strategies for sexual abuse. • See Part 1, Module 2 – Sexuality (link)
Menstruation and Menstrual Hygiene • Menarche is often early • Teach menstrual hygiene in a repetitious step-by-step manner • Most women who manage their own toileting can be taught to self-care for menses • Use hormonal intervention only – After behavioral intervention has failed – If menses interfere with patient’s quality of life
Cyclical Behavior Changes • Occurrence – 16% menstruating women with IDD • Symptoms –temper tantrums, crying, autistic or self abusive behavior, seizures • Diagnosis - Documentation • Therapy – – First NSAIDs (behavior may be due to cramps) – Then try OCPs, DMPA, SSRIs Source: Quint 1999
Abnormal Uterine Bleeding • Menorrhagia common with Down syndrome, hypothyroidism and obesity • Antipsychotic medications linked to hyperprolactinemia • Menstrual calendars and pad counts assist diagnosis • Non-surgical management See Part 3, Module 2
The GYN Examination • See Part 2, Module 1 for preparation and positioning tips (link), particularly avoid the use of stirrups • Give options of who will accompany her. • If the patient can tolerate a speculum, use a small bladed Huffman or Pedersen • Use a modified bimanual examination (one finger) through the vagina or rectum
Cervical Cancer Screening • Guidelines same as general population • Often inadequate past medical history to identify HPV risk • Alternative to speculum exam is a blind Pap smear • Resolving institutional requirements
Ultrasound • Use for screening vs. medical indication • Issues for this population: – Bladder filling – Patient cooperation • Does not reveal condition of the cervix or vagina including lesions, discharge or bleeding.
Sedation vs. Anesthesia only used for indicated examination, based on complaints If anesthesia is to be used for another procedure, plan pelvic exam at that time with other medical and/or dental providers No data on utility of sedation No data on the emotional effects
Surgical Procedures • Guidelines for hysterectomy and endometrial ablation same as general population • Endometrial ablation should not be used in the younger population for menstrual hygiene • Federal, state and local regulations
Considerations for Surgical Procedures If hospitalized, attempt to arrange 24 hour care of a known caregiver Provide adequate pain relief, especially if the woman is nonverbal Staples for wound closure should be avoided
Informed Consent • Assessment of capacity to consent requires multiple criteria • Despite ability to consent – important to get patient’s assent • Be alert to coercion and conflict of interest • Process often involves state and jurisdictional statutes
Sterilization • Legal /ethical issues • Exhaust other possibilities: i. e. hormonal preparations and patient education. • Jurisdictional differences govern guardian and parental requests • Patient autonomy is key: “The presence of a mental disability does not, in itself, justify either sterilization or its denial” • Source: ACOG Committee Opinion #371, 2007
Pregnancy and Parenting • • • Fertility Genetic Counseling Delay in seeking prenatal care Anti-seizure medications Education on impact of pregnancy on the body • Concerns for labor and delivery • Care of the child after delivery
IDD-Osteoporosis Greater risk for women with IDD due to: • Menstrual irregularities • Hypothyroidism • Use of anticonvulsants • Use of steroids • Earlier menopause • Greater inactivity • Vitamin D deficiency
Down Syndrome (DS) Most common genetic disorder. Secondary conditions include: • • Congenital heart disease – 50% Altered immune response Hypothyroidism – 20% Auditory disorders – 60 to 70% Obstructive sleep apnea – 50% Altered vision – 50% Mental illness – particularly depression and obsessive compulsive disorder and dementia
DS - Reproduction Menstruation onset and menstrual irregularities similar to general population Impaired fertility has been noted Only a few pregnancies have been described in women with DS with varying outcomes
DS - Aging • • Early aging Frequent early dementia Early menopause Osteopenia and osteoporosis
Intellectual and Developmental Disabilities Summary • Assure confidentiality and autonomy to the maximum the situation allows • Provide sex and health education that is age and developmentally appropriate • Menstruation has impact on the patient and caregivers. • Acting out behavior is often a response to physical or psychological conditions • Premature aging and osteoporosis
IDD Case Study Discussion Sexual Abuse Pregnancy Seizure Medications Sex education Contraception
Resources - Curricula • • • Women Be Healthy – Curricula for teaching general and reproductive health education – University of NC at Chapel Hill – one copy free of charge. Order at http: //www. fpg. unc. edu/~ncodh/Womens. Health/week 2. cfm Let’s Talk About Health – What Every Woman Should Know – Illustrated 170 pg. workbook, DVD, audio tapes. Author: Caryl Heaton, DO. The ARC of New Jersey contact Dianne Flynn – dflynn@ARCNJ. org or call 732 -2462525 x 28. Sexuality education videos for persons with developmental disabilities. Choices, inc. Making Connections and Person to Person www. johncarmody. net/clients/choices/ Through the Looking Glass – has a variety of publications and services to assist women with disabilities with pregnancy and parenting issues. http: //lookingglass. org/index. php Management Guidelines: Developmental Disability, Version 2, 2005. Therapeutic Guidelines Ltd. N. Melbourne Aust. www. tg. com. au
References • • • Quint EH. Gynecological health care for mentally disabled women. Presentation at NASPa. G Meeting, May 1996. Muram D, Elkins TE. Reproductive health care needs of the developmentally disabled. In: Sanfilippo JS, ed. Pediatric and Adolescent Gynecology, Philadelphia, PA. WB Saunders Co, 1994: 490 -498 Bradshaw, KD, Elkins TE, Quint EH. The patient with mental retardation: Issues in gynecologic care. University of Texas Southwestern Medical Center, Dallas Texas. 1996. Edwards JP, Elkins TE. Just Between Us: A Social Sexual Training guide for Parents and Professionals with Concerns for Person with Developmental Disabilities. Austin, TX: Pro_Ed. 1988. Lennox N, Beange H, Davis R, Duvasula S, Edwards N, Graves P, et al. Management guidelines, Developmental Disabilities, 2 nd ed. Melbourne, Australia: Therapeutic Guidelines, 2005. Downloaded from www. tg. com. au/index. php? sectionid=100 on 1/6/08 Lee JK, Saw HS. Can human papilloma virus DNA testing substitute for cytology in the detection of highgrade cervical lesions? Arch Pathol Lab Med. 2004; 128: 298 -302. American College of Obstetricians and Gynecologists. Practice Bulletin #45: Cervical cancer screening. ACOG 2003 American College of Obstetricians and Gynecologists. Access to Reproductive Health Care for women with Disabilities in Special Issues in Women’s Health Care. ACOG, Washington DC, 2004. Kavoussi SK, Smith YR, Ernst SD, Quint EH. Cervical cancer screening with liquid cytology in women with developmental disabilities. J of Women’s Health 2009; 16: 115 -8. Quint EH, Elkins TE. Cervical cytology in women with mental retardation. Obstet Gynecol 1997; 89: 123 -6 Rosen DA, Rosen KR, Elkins TE, Anderson HF, Mc. Neeley SG, Song C. Outpatient sedation: An essential addition to gynecologic care for person with mental retardation. Am J Obstet Gynecol. 1991; 164: 825 -828 Pueschel SM, Jackson IMD, Giesswein P, et al. Thyroid function in Down syndrome. Res Dev Disabil Res 1991; 12: 287 -96.
References , Con’t. • • • Down’s Syndrome Medical Interest Group. Medical Series No. 2: Thyroid disorder among people with Down’s Syndrome: Notes for doctors. Down’s Syndrome Association 2006. Downloaded from www. dsmig. org. uk. 1 on 0/3/08 Elkins T. gynecologic care. In: Purschel SM, Pueschel JK, eds. Biomedical Concerns in Persons with Down Syndrome. Baltimore, MD: Paul H. Brookes Publischin g. Col, Linc. : 1992: pgs 139 -46. American College of Obstetricians and Gynecologists. Committee Opinion No. 371: Sterilization of women, including those with mental disabilities. ACOG, 2007, Washington, DC. In re Montgomery, 311 N. C. 101, 316, E. E. 2 d 246 (1984). Hayman RL. Presemptions of justice: Law, politics and the mentally retarded parent. Harvard Law Review. 1990; 103. National Institute on Child Health and Human Development. Facts About Down Syndrome. Downloaded from http: //www. nichd. nih. gov/publications/pubs/downsyndrome. cfm? renderforprint=1 on 10 -6 -08. de. Hingh YC, van der Vossen PW, Gemen EF, Mulder MB, et al. Intrinsic abnormalities of lymphocyte counts in children with Down syndrome. J Peds 2005; 147: 744 -7. Smith DS. Health care for adults with Down syndrome. 2001. Downloaded from http: //healthlink. mcw. edu/article/1001820316. htm. on 10/6/08 National Health Service Direct. Down’s syndrome complications. 2008. Downloaded from : http: //www. nhsdirect. nhs. uk/articles/article. aspx? article. Id=136§ion. Id=6 on 10/7/08 Elkins TE, Anderson FH. Sterilization of persons with mental retardation. JASH. 1992; 17: 19 -26
References • • • Meijboom F, Szatmari A, Utens E, Deckers JW, Roelandt JR, Bos E, Hess J. Long-term follow-up after surgical closure of ventricualr septak defect in infancy and childhood. J Am Coll Cardiol. 1994; 24: 1358 -64. Tager-Flusberg, H. Neurodevelopmental Disorders , MIT Press, Cambridge MA. 1999. - Pg 163 Wilkinson JE, Culpepper L, Cerreto M. Screening tests for adults with intellectual disabilities. J Am Board Fam Med. 2007; 20: 399 -407. Management Guidelines: Developmental disability Version 2 Therapeutic Guidelines Ltd. N. Melbourne Australia. 2005, Pg. 230 Schupf N, Pang D, Patel BN, Silverman W, Schubert R, Lai F, Kline JK, Stern Y, Ferin M, Tycko B, Mayeus R. Onset of dementia is associated with age at menopause in women with Down’s syndrome. Ann Neurol 2003; 54: 433 -8 Ranganath R, Rajangam S. Menstrual history in women with Down syndrome – A review. . Indian J of Human Genetics 2004; 10: 18 -21 Bovicelli L, Orsini LF, Rizzo N, Montacuti V, Bacchetta M. Reproduction in Down syndrome. Obstet Gynecol 1992; 59(Supple)13 S-17 S. Van Dyke DC, Mc. Brien DM, Sherbondy A. Issues of sexuality in Down syndrome. Down Syndrome Research and Practice. 1995; 3; 65 -69 Schrager S. Epidemiology of osteoporosis in women with cognitive impairment. Mental Retardation 2006; 44: 20311. Dinerstein RD, Herr SS, O’Sullivan. A guide to Consent. 1999, Washington DC. ; American Association on mental retardation.
Module 6 Sensory Disabilities Hard of Hearing Low Vision
Case Study – Sensory Disabilities Previous adverse experience with pelvic exam Communicates via sign language but also does some lip reading. Acute symptoms requiring evaluation.
Objectives – Sensory Disabilities At the completion of this module the participant will be able to: • Describe unique strategies in health care delivery for women who are hard of hearing • Describe unique strategies in health care delivery for women who have visual impairment.
Hearing Impairment Overview • 9% of US Population (Ries, 1994) • The patient’s age, place of birth, the timing and amount of hearing loss and preferred communication modality determines communication strategies: – Hard of hearing – Deaf who communicate orally – Deaf who communicate using sign language
Communication Barriers for the Deaf or Hard-of-Hearing • • Lip reading Masks Note writing Reading comprehension • Family as interpreters • Automated telephone systems
Communication Facilitators for the Deaf and Hard-of-Hearing • Free telephone relay services • Text messaging • Discounted communications equipment • Tax incentives for providing accommodation
Suggestions for Communication • ASK patient how she prefers to communicate • Prepare written easy to read instructions for basic office procedures • Minimize back ground noise • Have good lighting • Be discrete in public setting – No raised voices • Inform patient before touching or moving
Hard of Hearing ADA Requirements • Provision of a qualified interpreter • Flexibility in policy, procedure and practice
Hard of Hearing OB/GYN Health Issues • May have decreased family history information • Face masks during delivery and surgical procedures inhibit lip reading • Assure means for follow up communication
Communication Suggestions for the Blind and Low Vision • Don’t make assumptions about functional effects of visual acuity • Do not touch or remove mobility aids • Describe procedures before performing them • All written forms and documents should be read aloud in a private setting • Reading aloud may not provide effective communication for some patients • Use preferred techniques when handling money or credit cards
Health Information Considerations for the Visually Impaired • Assure patient information is in a form patient can utilize • Formats include : braille, large-print texts, audiotape recordings, videotapes or DVDs with oral descriptions and computer diskettes (Iezzoni 2006) • See resources section to access large type, braille and recorded patient information.
Pregnancy, Labor and Delivery • Assure that an appropriate means of communication is established in each setting • Cues for anticipated needs • Contact procedures for off hour emergencies • Determining the presence of bleeding or discharge for pregnant women with low vision • Establish a plan for labor and delivery
Working with Service Animals Service animals should remain with their owner whenever possible
Case Study – Sensory Disabilities • Communicates with ASL, no interpreter available • Fearful due to past experience • Current pelvic disorder, requiring evaluation
Summary – Sensory Disabilities • Assuring accurate communication is key to patient care • ASK the patient what will help in the situation • Utilize technology available • ADA requirement to provide qualified interpreter and other office accommodations.
References – Sensory Impairment • • Ries PW. Prevalence and characteristics of persons with hearing trouble: United States, 1990 -91. Vital Health Stat. 10. 1997 Barnett S. Communication with deaf and hard-of-hearing people: A guide for medical education. Academic Medicine 2002; 77: 694 -700 National Institutes of Healthy People 2010: #28, Vision and Hearing. Downloaded from http: //www. healthypeople. gov/Document/HTML/Volume 2/28 Vision. htm on 6/6/08 Steinburg AG, Sullivan VJ, Montoya LA. Lipreading the stirrups: An investigation of deaf women’s perspectives of their health, health care, and providers. Paper presented at National Health Service Corps 25 th Anniversary Meeting in Washington, DC 1998. Iezzoni LI, O’Day BL. More than Ramps: A Guide to Improving Health Care Quality and Access for People with Disabilities. Oxford University Press, New York, NY 2006. Price, S. Legal Briefings: Service animals under the ADA & IT Technical Assistance Centers 2006. Downloaded from http: //www. equipforequality. org/resourcecenter/ada_serviceanimals. pdf on 10/20/08 Meador HE, Zazove P. Health care interactions with deaf culture. J American Board of Family Medicine 2005; 18: 218 -22
Resources American Council of the Blind http: //www. acb. org/resources/index. html American Foundation for the Blind: National Association of the Deaf –http//: www. nad. org Pregnancy information DVD with Signing for the Hard of Hearing – “Your pregnancy and what to expect” contact Harris Communications www. harriscomm. com click on consumer education.
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