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Health Guide forAdults Living with

Spina Bifida

1. Feeling Great

2. Looking Good

3. Living Healthy with Spina Bifida

4. Managing My Own Health

Appendix A – Personal Health Record

Appendix B – Background on Spina Bifida

Health Guide for Adults Living with Spina Bifida


•Practical resource for adults to use in managing their own health care

•Focus on health information

•First in a series of health guides for the spina bifida community

•guide for parents to follow in 2006

•guide for teens to follow in 2007

• Practical Thoughts on How to Use This Guide

TIPS FOR USING HEALTH GUIDE

Adult Learning Principles

• Adults are practical and goal-oriented

• Adults learn best when in a supportive environment

Hurdles • Overwhelming-Break big

goals down into smaller goals that are more realistic and attainable

• Disorganization- Work together

• Fear of failure-Celebrate efforts as well as success

1. Feeling Great

• Mental health

• Learning

• Social Skills

• Sexuality


2. Looking Good

• Meal planning and diet

• Weight management

• Physical activity




• Bladder care Skin care

• Bowel care Latex allergy

• Head and spine Sexual function

• Aging

4. Managing My Own Health

• Being my own advocate

• Preparing for my health care visits

• Managing my health insurance


Appendix A – Personal Health Record

Appendix B – Background on Spina Bifida


Personal Health Care Record will help you:

• Organize your health information in a central place.

• Keep a record of the health care services you receive.

• Track changes in your medications and treatments.

• Tell health care providers about your medical condition.

• Prepare for and make health care appointments.

•Every year or every six months

•After any changes in your condition, treatment, medications, health care providers, or if you have any major procedures.

Update your Personal Health Care Record

Keeping your Personal Health Care Record•Take the notebook with you when visiting health care providers.

•Make copies to keep on file at home and with your health care providers.

•Make copies of your Personal Information. Keep copies of this information:

•in your purse/wallet with your health care providers

•at home with your emergency contact person

•in your vehicle

•Primary Diagnosis

•Latex Allergies

•Emergency Contact

•Advance Directive

Personal Information

Family History(parents, sibling and grandparents)

Alcohol Abuse

Asthma

Cancer

Diabetes

Dementia

Depression

Heart Disease

High Blood Pressure

Stroke

•Primary Hospital

•Primary Care Provider

•Specialty Care Providers

•Physical Medicine

•Urology

•Orthopedics

•Neurosurgery

Healthcare Providers• Nurse Practitioner

• Occupational Therapist

• Physical Therapist

• Psychologist

• Dentist

• Gynecologist

• Optician/ Ophthalmologist

•Primary Insurance information

•Secondary Insurance information

•Case Manager

Insurance Information

•List of equipment, supplies and personal care items

•Name and contact information of vendor

•Date of Purchases

Equipment/Supplies

•Name of Pharmacy and contact information (including fax number)

•Allergies and Reactions

•Current list of medications

Medications

•Date

•Fever

•Other Symptoms

•Antibiotics

•Length of Treatment

Urinary Tract Infection Tracking Form

•Date

•Time of Stool

•In Toilet

•Accident- Activity at time of accident

•Amount/Consistency

•Comments (include current bowel management interventions- i.e. result of enema, suppository etc.)

Bowel Movement Tracking Form – Trouble Shooting

•Make health care appointments.

•Coordinate the scheduling of multiple health care appointments.

•Remember and keep scheduled health care appointments.

Health Care Appointment Scheduler

1. Use a calendar for the current year to make and record your health care appointment.

2. Use the Health Care Appointment Scheduler form to record:

• Date of appointment.

• Name of health care provider that you have

appointment with.

• Reason for appointment and care received.

• Date of next appointment with provider.

Health Care Appointment Scheduler

3. Record health care appointments on calendar and Health Care Appointment Scheduler form.

4. Take your calendar and Health Care Appointment Scheduler to the health care appointment, and use to schedule future appointment with your provider.

Health Care Appointment Scheduler…

•Ask question before taking any new medications.

•Use the tips on refilling medications.

Health Care Appointment Scheduler…

Blood Pressure Begin checks once a yearBreast Exam Once a yearCholesterol Begin checks once a year at age 20Colorectal Cancer Begin checks once a yearColonoscopy Beginning at age 50 Dental Exam Every 6 months

Screening and Diagnostic Test Checklist

Depression As needed, speak with physicianDiabetes Test Begin checks once a yearEye Exam At least once a yearHeight and Weight Once a yearMammogram Begin checks once a year at (women) age 40, depending on riskOsteoporosis Speak with physician about (Bone density) when to start bone density test

Pap Smear and related Every two yearsscreening (women)Prostate Cancer and Begin checks once a yearrelated screening (men)Flu Shot Speak with physicianHepatitis B Shots Speak with physicianPneumonia Shot Speak with physicianTetanus-diptheria Shot Every 10 years

Screening and Diagnostic Test Checklist

Bladder Ultrasound As needed, based on symptomsCT Scan/MRI As needed, based on symptomsCystoscopy 10 years after augmentation, annually thereafterRenal Blood Test As needed, based on symptomsRenal Scan As needed, based on symptomsRenal Ultrasound At least every two yearsSpine X-Ray/MRI As needed, based on symptomsUrodynamic studies As needed, based on symptomsUrinalysis As needed, based on symptomsVCUG As needed, based on symptoms

SPINA BIFIDA SPECIFIC TESTS

•Informing Staff of Latex precautions•Bring medication and glasses •Take Personal Health Care Record with you•Tell close friend or family where you are•Actively participate in care•See guide for other suggestions

Suggestions for Hospital Stay

•HOSPITAL STAY TRACKING FORM•SURGERIES AND NON SURGICAL

Suggestions for Hospital Stay

Appendix BMedical Facts About Spina Bifida

• Purpose:

give copies to HCP or anyone you want to educate about spina bifida.

Update the guide when you change your clocks (Fall and Spring)

TIPS FOR USING HEALTH GUIDE

Marlene Lutkenhoff, RN, MSN Chair, Editorial Review CommitteeCincinnati Children’s Hospital Medical CenterEmail: [email protected]

Adriane K. Griffen, MPH, CHESDirector, Public Health Programs Email: [email protected]

Download a copy from www.sbaa.org

More Information

mailto:[email protected]

mailto:[email protected]

http://www.sbaa.org/

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