A Model of Care for Patients with Spina Bifida. Dr C West AM Spina Bifida Service The Children s Hospital at Westmead 2012
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1 A Model of Care for Patients with Spina Bifida Dr C West AM Spina Bifida Service The Children s Hospital at Westmead 2012
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3 Explanation of Model of Care To provide a framework for holistic care of patient with spina bifida Across the age span Medical issues,relative importance Impairment, relative importance Lifestye issues Family/relationship issues Health management
4 One Hundred Complications + Medical - Physical Medical - Emotional, mental health Genetics Family/Relationships Housing Employment Finances
5 Medical - Physical Neurological Orthopaedic - muscles and bones Neurogenic Bladder and renal Gastro intestinal and neurogenic bowel Skin, soft tissues, sensation Back spinal cord, bones, skin Endocrine
6 Neurological Hydrocephalus - shunt dysfunction; disconnection; infection; extravasation Meningitis Cognitive impairment especially executive functioning Arnold-Chiari malformation Syringomyelia, Arachnoid cyst spine/brain
7 Neurological Tethered cord syndrome, dermoid cyst, split cord syndrome, diastamatomyelia, arachnoiditis Seizures Brain stem problems central apnoea, vocal cord paralysis, swallowing dysfunction Eye problems nystagmus,strabismus,6 th nerve palsy,optic atrophy,amblyopia, impaired vision
8 Orthopaedic - Muscles Lower motor neurone dysfunction - flaccid paralysis of muscles Fixed deficit i.e. no improvement in nerve function, no deterioration [unless complications] About 10% have some spasticity in lower limbs Sensory deficit limits feedback about muscle function, position of limb, learning to walk
9 Orthopaedic - Bones Joint Deformity, dislocation, subluxation Fractures Osteoporosis, osteopenia Joint deformity, instability Osteomyelitis Bursa Charchot s joint Osteoarthritis
10 Neurogenic Bladder /Renal Complications Inefficient emptying of bladder Infection of urine High pressure bladder Ureteric reflux Hydronephrosis Renal damage renal failure Calculi - bladder, kidneys Hypertension Incontinence
11 Neurogenic Bladder- Intervention Complications Ureteric stricture Conduit - stenosis, stretching, calculi Vesicostomy stenosis, dermatitis Augmentation hyperchloremic acidosis, calculi, rupture, metaplasia Appendicovesicostomy stenosis, granulation Dialysis - multiple issues Renal transplant multiple issues
12 Gastrointestinal Complications Constipation/Diarrhoea Incontinence of bowel Peritoneal shunt Inguinal hernia Rectal/vaginal prolapse Haemorrhoids/anal fissure Gastro-oesophageal reflux
13 Gastrointestinal Intervention Complications Peritonitis - shunt infection Adhesions bowel obstruction Bladder augmentation bladder rupture Caecostomy button/stoma stenosis, abscess Caesarean Section following abdominal surgeries Appendicitis/ pelvic abscess late presentation reduced pain
14 Skin and Soft Tissues Sensory loss reduced pain, position sense Pressure areas Cellulitis Ulcers Sinus tracts/ fistulas Chilblains Poor circulation/discoloration/cold limbs Excoriation [due to incontinence] Latex allergy
15 Skin and Soft Tissues Lymphoedema Deep Venous Thrombosis Burns Capillary Haemangioma in Myelomeningocoele repair area Hairy patch in MM repair area Excoriation/skin breakdown in MM area secondary to scoliosis/lordosis
16 Structural Spinal Complications Back pain multiple causes Scoliosis Kyphosis Lordosis Hemivertebrae/block vertebrae Pelvic obliquity Postural and seating issues Disc degeneration
17 Respiratory Complications Central apnoea Obstructive apnoea[e.g. vocal cord paresis] Sleep apnoea Restrictive lung disease due to scoliosis/kyphosis Pneumonia Use of CPAP/BIPAP
18 Endocrine Complications Short stature Reduced growth hormone/ slow weight gain Precocious puberty Delayed puberty Male infertility Undescended testes Breast development[disproportionate to short spine] Obesity
19 Aetiology and Genetics Family History Syndromes e.g. Waardenburgs,trisomy13 or 15, cloacal anomalies, imperforate anus Dietary/drugs/alcohol/foetal alcohol syndrome/anorexia Risks for procreation/use of folate patient, other family members
20 Mental Health Issues Adjustment disorders family, patient Anxiety Depression parent s, patient Dementia -? Earlier onset
21 Family Complications Adjustment - Parents, siblings,other family members, patient growing up Time commitments to caring Hospitalisations planned, urgent Sibling concerns Financial impacts Future children
22 Housing Secure affordable housing Accessible housing Access to medical care and education Changing needs as child grows Transport from home to school, medical care, employment, leisure activities
23 Education and Employment Maximising education close to home Extra support for school work Planning realistic future goals Employment physical AND cognitive abilities Work efficacy may be limited Transport to work/driving/costs Illness/hospitalisation impact on work
24 Relationships Within the family School friends building/keeping relationships Sexuality/sexual behaviour/vulnerability Sexual functioning Marriage expectations for both partners Reproduction/fertility Parenting
25 Planning/Managing Pregnancy Relationships reality/practical basis Contraception Motivation for pregnancy Genetics Maternal health Ability to be a parent Management of pregnancy/mobility issues Management of delivery Support for baby care physical/emotional Problem solving re baby s care needs
26 Finances Financial implications for family mothers ability to work /child s needs Budgeting for patient Dealing with Centrelink/DSP/part time work Equipment/housing/transport costs Access to subsides and other assistance
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