Improving Access to Care for Women with Spinal Cord Injury

Stephanie A. Kolakowsky-Hayner, PhD, CBIST, FACRM

Icahn School of Medicine at Mount Sinai

Amie B. McLain, MD

University of Alabama Birmingham

Karion Gray-Waites, DNP RN BC-FNP CRRN (Presenting)

Heather B. Taylor, MS, MEd, PhD

TIRR Memorial Hermann

Disclosures

Authors/Presenters have no financial or non-financial interest to disclose.

This continuing education activity is managed and accredited by AffinityCE in cooperation with PVA. AffinityCE, PVA, as well as all accrediting organizations, do not support or endorse any product or service mentioned in this activity. Disclosure will be made when a product is discussed for an unapproved use.

AffinityCE staff and PVA Staff, as well as Planners and Reviewers, have no relevant financial or non-financial interests to disclose.

Commercial Support was not received for this activity

DisclosuresDrs. Kolakowsky-Hayner, McLain, and Taylor are funded by research grants from the National Institutes on Disability, Independent Living and Rehabilitation Research and the Craig H. Neilsen Foundation

This continuing education activity is managed and accredited by AffinityCE in cooperation with PVA. AffinityCE, PVA, as well as all accrediting organizations, do not support or endorse any product or service mentioned in this activity. Disclosure will be made when a product is discussed for an unapproved use.

AffinityCE staff and PVA Staff, as well as Planners and Reviewers, have no relevant financial or non-financial interests to disclose.

Commercial Support was not received for this activity.

Learning Outcomes

At the conclusion of this activity, the participant will be able to:

1.Describe at least three obstacles preventing adequate and accessible healthcare for individuals with disabilities in general and particularly those with spinal cord injury.2.Identify at least three healthcare needs faced by women after spinal cord injury and at least two specialized services that could help ameliorate those needs.3.Explain the current efforts of the Spinal Cord Injury Model Systems of Care Women’s Health Task Force, American Congress of Rehabilitation Spinal Cord Injury Special Interest Group Women’s Health Taskforce, and the TIRR/Mount Sinai Collaborative Neilsen Projects to improve access to healthcare for women after spinal cord injury.

CE/CME Credit

If you would like to receive continuing education credit for this activity, please visit:

https://pva.cds.pesgce.com

Obstacles to Adequate and Accessible Healthcare

“Access to comprehensive, quality health care services is important for promoting and maintaining health, preventing and managing disease, reducing unnecessary disability and premature death, and achieving health equity for all Americans.”

Access to Health Care

Barriers to Care

Barriers Lead to…

Unmet needsDelaysLack of prevention$$$Hospitalization

Variation in access

Women in general face barriers to reproductive healthcare

The Austin Chronicle, 2015

Cost is a significant barrier

Kaiser Family Foundation, Women’s Health Survey

Women with physical disabilities face persistent and significant barriers to women’s healthcare

Access depends on many things!

site and equipment inaccessibility

lack of disability competent staff

Absence of agreed upon substitute protocolsDiscomfort and negative perceptions

Women’s Healthcare Needs After SCI

NEURO-ANATOMY

• There are specific spinal cord levels that direct reproductive organ function and communications.

• Sexual function and perception of menstruation, labor and delivery may be altered depending on the level of injury.

• It is the neuro-endocrine (hormone) function however, that provides the major reproductive regulation.

The Female reproductive system operates in an orderly, controlled sequence of events responsible for the precise hormonal regulation of the hypothalamus, pituitary, and ovaries.

NEURO-ENDOCRINE PHYSIOLOGY

FEMALE REPRODUCTIVE FUNCTION

An Inter-relationship of SCI Disability exists with a Woman’s Reproductive Function▪ SCI may have direct or indirect effects on the Female’s Reproductive Function ▪ Effects Of The Reproductive Endocrine Cycle may emphasize the symptoms/secondary consequences of a woman who has had an SCI

FEMALE REPRODUCTIVE FUNCTION

Inter-relationship of SCI Disability and Reproductive Function

EFFECTS OF SCI ON REPRODUCTIVE FUNCTION

Gynecologic ProblemsFertility And PregnancyMenopause and Aging

EFFECTS OF SCI ON REPRODUCTIVE FUNCTION

Gynecologic Problems

GYNECOLOGIC PROBLEMS

Most significant problem is accessibility in performing the gynecologic exam

GYNECOLOGIC PROBLEMS

Acute Spinal Cord Injury (at least one year post-injury)

45-65% of Women Experience Menstrual Irregularities.Hyperprolactinemia

Elevated prolactin levels have been reported in almost 2/3 of women

Galactorrhea Has been reported in almost 20-30% of women

GYNECOLOGIC PROBLEMS

Chronic Spinal Cord Injury

Once menses resumes after injury, menstrual cycle patterns and related problems are similar to what has been reported in able body women however additional SCI-related symptoms may occur as a result of cyclic reproductive endocrine changes.

GYNECOLOGIC PROBLEMS▪ Dysmenorrhea

⬥ Painful pelvic cramping that may be experienced in the lower abdomen (neurologic loss below T-10) or referred above this level (injuries T-10 and above)

⬥ Occurs just before or during menstruation⬥ Associated with an exacerbation of many symptoms

seen in women with disabilities.⬧autonomic dysreflexia (AD), worsening spasticity,

bladder spasms, non-AD related HA and sweating, tachycardia, diarrhea, impactions, tremulousness

GYNECOLOGIC PROBLEMSPrevalence of Dysmenorrhea in Women with and without SCI**

Able-body Population 75%

Severe sx’s in Able-body Population 15%Occurrence after SCI 57%Sx’s in SCI

Cramping 27%Excessive Weight Gain and LE Swelling

44%

↑ Autonomic Sx’s 25%↑ Bladder Spasms 18%↑ Muscle Spasms 22%

Jackson AB, Wadley, V. A multicenter study of women’s self-reported reproductive health after spinal cord injury. Arch Phys Med Rehabil 1999; 80: 1420-8

EFFECTS OF SCI ON REPRODUCTIVE FUNCTION

Fertility And Pregnancy

FERTILITY

Common gynecologic conditions that affect fertility in women with SCI

Irregular or no ovulation with irregular menstruation

Abnormal Uterine BleedingSecondary Amenorrhea

FERTILITY

Abnormal Uterine Bleeding--Types

Dysfunctional uterine bleeding (DUB): Excessive menstrual blood flow (MBF) usually of endocrine etiologyMenometorrhagia - prolonged uterine bleeding at irregular intervalsMenorrhagia - Prolonged, heavy uterine bleeding at regular intervalsMetrorrhagia - Frequent, irregular menses

FERTILITY▪ Abnormal Uterine Bleeding--Etiology

⬥ Systemic Disease (more likely to occur with some disabilities)Disorders of blood coagulationLeukemiaSevere sepsisHypothyroidism

⬥ Reproductive Tract Disorders (no increase incidence after SCI but more likely not recognized after SCI without pelvic sensations)Uterine Abnormalities: leiomyoma, polyps, adhesionsVaginal infectionsForeign bodiesMalignancies

FERTILITYAbnormal Uterine Bleeding—Etiology

Iatrogenic – medications⬥Accidents of Pregnancy⬥Dysfunctional Causes⬧Anovulation secondary to alterations in neuroendocrine function

⬧Ovulatory dysregulation (perimenopausal, adolescents and others)

FERTILITY

Secondary Amenorrhea

▪ Absence or cessation of menses during reproductive years

FERTILITY

Secondary Amenorrhea—Etiology

Acute SCI

it is hypothesized that spinal shock interrupts GnRH pulsatile release which prevents adequate pituitary recognition for gonadotrophin production with resultant CNS Hypothalamic-Pituitary Axis Dysfunction. Other conditions can contribute or potentiate this dysfunction.

Pregnancy

Before ConceptionMedicationPhysical ChangesSCI and GYN health care provider

Pregnancy/GestationalActivities of Daily LivingAutonomic DysreflexiaBladder ManagementBowel management

Pregnancy /Gestational

Deep Vein Thrombosis

Medication

Nutritional Needs

Pressure Ulcers

Respiratory Capacity

Urinary Tract Infection

Labor and Delivery

Autonomic Dysreflexia -vs- Preclampia

Vaginal -vs- Cesarean Section

Positioning

Breastfeeding

EFFECTS OF SCI ON REPRODUCTIVE FUNCTION

Menopause and Aging

Menopause

Obesity

Skin Problems

Osteoporosis

MenopauseOverweight

▪ 1) Bodyweight greater than desirable level for a given age, sex, and skeletal frame.(NIH).

▪ 2) Greater than 15% for adult men and 23 % for adult women of body fat relative to body weight (i.e. percentage body fat). (Lohman TG, 1992)

Obesity ▪ 1) Bodyweight exceeding 20% of the desirable

level for a given age, sex, and skeletal frame (NIH)

▪ 2) Greater than 25 % for men and 32 % for women of body fat relative to body weight (i.e. Percentage body fat). (Lohman TG, 1992)

Menopause and Obesity Contributing Factors

Obesity and being overweight are common secondary conditions in women with SCI.

Sedentary Life StylesChanges in Body Composition as a consequence of immobility and paralysis Actual fat-free (i.e. residual lipid-free chemicals and tissues including water, muscle, bone, connective tissue and internal organs=water, protein and minerals) body composition in the disabled adult is unknown

Menopause and Obesity Contributing Factors

There are few studies on the variability and extent of body composition differences as a result of specific disabilities therefore no standards exist to accurately assess each individual with a disability

Menopause and Obesity Contributing Factors

Medical interventions (such as prednisone) may affect body compositionSocioeconomic factors may lead to poor dietary habitsWomen with SCI face barriers to physical activity and healthy diets—i.e. transportation, accessible fitness centers, lack of knowledge about capabilities for exercise, lack of knowledge or skills needed to engage in physical activity, fatigue and pain.Many health care providers are inaccessible to obtaining weight measurements for women in wheel chairs.

Menopause and Obesity Contributing Factors

Some women are unable to prepare healthy food or do not have sufficient attendant careThere are inadequate weight management guidelines for women with SCI. Appropriate guidelines must take into account other conditions such as neurogenic bowel and bladder, skin problems, fatigue, degree of neurological impairment.Many disabilities from SCI result in lower daily energy expenditure

Long-Term Consequences of Obesity after SCI

▪ Premature Cardiovascular Disease▪ Diabetes▪ Increase obesity-related disability such as

osteoarthritis, pain, respiratory compromise▪ Increase need for expensive equipment or

mobility aids (change in wheelchairs, orthoses, walkers, etc.)

▪ Increases injury or turnover of caregivers▪ Impairs ability to maintain proper hygiene▪ Predisposes to LE edema▪ Predisposes to Sleep Apnea Syndrome▪ Poor self-esteem, depression

Prevention/Management of Obesity

▪ Dietician referral with attention to bowel programs. INVOLVE CAREGIVERS.

▪ Education▪ Disability specific exercise program▪ Arm Exercises▪ FES-Assisted Exercise▪ Involvement in recreational therapy ▪ Surgery??

Menopause and Skin ProblemsDue to lack of Estrogen, the skin gets thin and more prone to focal injury causing increase in

▪ Decubitus Ulcers▪ Pressure SoresHealing is more difficult.

Menopause and OsteoporosisMagnitude of Problem

All individuals experience bone loss to varying degrees following neurological loss as a consequence to a mobility disability.

The degree of bone loss is dependent over time on the level and degree of neurological loss.

If complete paralysis 50-70% of bone loss is by 16 months but continues over the lifetime of the individual.

Menopause and OsteoporosisMagnitude of Problem

Pathophysiology of bone loss is initially from increased osteoclastic over osteoblastic activity of trabecular bone.Immobility, Endocrine, and Neural Alterations play a role in bone loss but details about these processes are lacking.Females and Males have unique concerns: The woman with a mobility disability will have an exacerbation of osteoporosis at menopause

Menopause and Osteoporosis Consequences—Fractures

Incidence: 2-6% greater in women than men (with disability)Increases with age and in post-menopausal womenManagement: Surgery vs Conservative

Menopause and Osteoporosis Consequences—Fractures

Complications: Non-union (2-10%) or delayed healing, Osteomyelitis, Skin break down, New risk for DVT/PTE,Autonomic Dysreflexia, Increased spasticityMorbidity, Mortality, and Development of New Disability

Osteoporosis Prevention and Treatment Strategies

Studies in SCI are lacking proof of Effectiveness of Osteoporosis Prevention or Treatment Hormones: Calcitonin, Parathyroid, Thyroid, Estrogen (?) Passive vs Active Wt Bearing Modalities: FES, Ultrasound, Pulsed electromagnetic fieldsSupplements: Fluoride, Vitamin D, Anabolic Steroids, Calcium, etcBehavior ModificationBisphosphonates: Etidronate, Pamidronate, Allendronate, Zoledronic acid

Women’s Health Task Force Initiative

Heather Taylor

Director for Spinal Cord Injury and Disability Research

TIRR Memorial Hermann

Why Focus on Women with SCI?

“Women only represent 20% of the SCI population!”

“They are really treated the same as 

men with SCI!”

“No significant differences have been found!”

Gender Differences –General Literature

Cardiovascular diseaseObesitySexuality/Sexual functioningDepressionPain

Women with SCIBladder, sexuality, and reproductive functioningProtective potential of EstrogenSecondary Conditions

Nociceptive painOsteoporosisAnemiaFatigueDepression

Slow Progress

Not Alone!

WOMEN’S HEALTH SIGSCIMS & ACRM

The mission of the Women’s Health SIG is to raise awareness of the physical, psychological, and social health of women with SCI, facilitate collaborative research, apply knowledge, and improve women’s health and quality of life following SCI.

Women with SCI: “What about Us?”

Women with SCI – Focus group FindingsChallenges

Findings resources Finding accessible care and specialists who serve women with SCI

Resource Needs for Women with SCI: Categories

• SCI Treatment• Generalized Medicine• Well Woman/OBGYN• Prenatal • Dental• Nutrition• Support Groups • Urology• Home Health

Finding Healthcare Professionals

Craig Neilsen SIP:Enhancing Health Resources for Women with SCI

Collaboration: TIRR Memorial Hermann and Mt Sinai with support from the WHTF

Heather B TaylorStephanie Kolakowsky-HaynerSusan Robinson-Whelen

Purpose

Develop a web-based directory of resources for women with SCI.

“Nothing about us without us!”James Carlton, 1998

Goalsconduct focus groups

Women with SCI CaregiversHealthcare professionals

Identify the top 3-5 healthcare needs/service priorities

Goal 2Initiate the Women’s Health Consortium (WHC)

Foundation for collaboration, sharing, and communication

Collect links to resources that are currently available for women with SCI

Goal 3Request women with SCI to recommend practitioners

Practitioners will be invited to be posted on the website by healthcare area served

Educational information will be developed to address gaps

Resources

Community Advisor Feedback – Logo Example

Thank you

Contact: Heather.Taylor@memorialhermann.org