Counting the Cost of Meningococcal Disease

Pediatric Drugs

Counting the Cost of Meningococcal Disease

A Severe Case of Meningitis and Septicemia

Wright C, et al.

Claire Wright, Medical Information Officer, Meningitis Research Foundation, Midland Way, Bristol BS352BS, UK

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Electronic Supplementary Material

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Appendix

Purpose

The purpose of this appendix is to describe the assumptions used in estimating the cost of an episode of meningococcal septicemia and meningococcal meningitis with severe sequelae and to describe these costs on a year-by-year basis.

Method

Two hypothetical children were put together to represent realistic but severe examples of cases of meningococcal meningitis and septicemia. Both scenarios were based on amalgamations of actual cases of disease. Twelve families who had a family member severely affected by meningococcal disease were interviewed in order to compile an exhaustive list of the sorts of health, educational and other resources used during and since the acute illness. Academics and professionals in health, social care and education were then consulted in order to refine our scenarios and more accurately represent the treatment and support that individuals with such sequelae might realistically receive from the NHS, PSS and other government departments. Unit costs used were taken from published UK costs as noted in the individual sheets, and multiplied by the experts' resource use estimates to give an estimate of total cost. All costs have been indexed to 2010/11 prices.[1]

Structure of this appendix

This appendix describes a severe case of meningococcal septicemia (patient A) and a severe case of meningococcal meningitis (patient B).

The scenario descriptions provide an overview of the problems that each patient has and the extra resources that they may require. The information is arranged into categories, with each category corresponding to a particular table number which indicates where in the appendix the reader can find detailed unit costs and assumptions associated with that category. A full list of professionals consulted and a list of references is provided. The healthcare resource groups (HRGs) used are also listed along with the national average unit costs associated with each HRG.

Findings:

Full yearly cost breakdowns for patients A and B are provided in tables 30 and 31, respectively.

Cost perspective

The cost perspectives used are NHS/PSS and government.

Contents

Patient A Scenario Description 5

Patient B Scenario Description 6

NHS/PSS Costs 7

Acute Care 7

Outpatient Appointments 10

Community Medicine 12

Specialist Equipment 13

Prosthetic Provision 15

Stump Revisions and Skin Graft Surgery 17

Behavioural Problems 18

Cochlear Implants 18

Public Health 19

General Health Problems 20

Epilepsy Management 20

Shunt Revision Surgery 20

Personal Social Services 21

Government costs 22

Education 22

Learning Support Assistant 22

Special Educational Needs School 22

Transport to and from school 22

Special Educational Need (SEN) statement 23

School adaptations and equipment 23

Other Costs to Government 24

List of consultees 27

HRG Codes and Associated Costs 28

References 30

List of Tables

Table 1: Grouper inputs – patient A 7

Table 2: Acute medical costs – patient A 8

Table 3: Grouper inputs – patient B 8

Table 4: Acute medical costs – patient B 9

Table 5: Outpatient appointment assumptions – patient A 10

Table 6: Outpatient appointment assumptions – patient B 11

Table 7: Community medicine assumptions – patient A 12

Table 8: Community medicine assumptions – patient B 12

Table 9: Specialist equipment assumptions – patient A 13

Table 10: Specialist equipment assumptions – patient B 14

Table 11: Lower limb prosthetic provision assumptions 15

Table 12: Upper limb prosthetic provision assumptions 16

Table 13: Stump revision and skin graft surgery assumptions 17

Table 14: Behavioural problem resource use assumptions and costs 18

Table 15: Cochlear implant service use assumptions and costs 18

Table 16: Public health resource use assumptions and costs – patient A 19

Table 17: Public health resource use assumptions and costs – patient B 19

Table 18: General health problems assumptions and costs 20

Table 19: Epilepsy management assumptions and costs 20

Table 20: Shunt revision surgery assumptions and costs 20

Table 21: Personal social services assumptions and costs – patient A 21

Table 22: Personal social services assumptions and costs – patient B 21

Table 23: Learning support assistant assumptions and costs – Patient A 22

Table 24: Special needs school assumptions and costs – Patient B 22

Table 25: Special educational needs statement resource assumptions and costs 23

Table 26: School adaptations and equipment assumptions and costs 23

Table 27: Other government costs – patient A 24

Table 28: Other government costs – patient B 26

Table 29: HRG codes and associated costs (from DoH reference costs 2008-9) 28

Patient A Scenario Description

DESCRIPTION / Table
No.
PATIENT A - A SEVERE CASE OF MENINGOCOCCAL SEPTICEMIA / ACUTE CARE - Patient A was 12 months old when he visited the GP with a fever and a rash and was subsequently rushed to hospital with suspected meningococcal disease. He was taken to the Emergency department by ambulance and from there transferred to PICU by a retrieval team. Patient A spent 31 days in PICU with severe septic shock, acute respiratory distress syndrome and renal failure. He also developed gangrene of the limbs due to purpura fulminans. His respiratory and renal problems were resolved in PICU, and he was transferred to a paediatric ward where he needed both legs amputated above the knee and one arm below the elbow. After the initial amputations, Patient A had to return to theatre several times for tissue debridement and dressing changes under anaesthetic. Once his wounds had begun to heal a little, patient A also underwent various skin grafting operations to repair damaged skin on his remaining limbs. In total he was in hospital for 6 months. / 2
OUTPATIENT APPOINTMENTS - Once discharged from hospital, patient A became a lifelong outpatient of a disablement services centre which provided prosthetic limbs. He was seen by a multidisciplinary team consisting of a consultant in rehabilitation medicine, a prosthetist, a physiotherapist and an occupational therapist on a regular basis. He also had regular appointments with the hospital paediatrician. / 5
COMMUNITY MEDICINE - Community therapists played a role in patient A’s rehabilitation regarding prevention of contractures and providing a programme of exercises to improve posture, strength and dexterity. The community therapists support parents and teachers who carry out the exercises with the child. / 7
SPECIALIST EQUIPMENT - Patient A needed specialist equipment from the hospital and the community therapists to assist him with his exercises and ultimately help him to move around independently. / 9
PROSTHETIC PROVISION - Patient A's prosthetic limbs needed upgrading and replacing as he grew and his needs changed. / 11 & 12
STUMP REVISIONS AND SKIN GRAFT SURGERY - As patient A grew, the bones in his amputation stumps grew at a different rate to the surrounding tissue and he had to undergo numerous operations to trim his bones and alter the coverage of his amputation stumps. In addition to this, the skin on one of his legs was in such bad condition that it needed to be covered with healthy skin taken from his back. In order to harvest enough skin for the operation skin expanders were inserted to stretch the skin. / 13
BEHAVIOURAL PROBLEMS - By the time patient A reached four years of age, he was starting to show signs of difficult behaviour. Patient A was referred to the child and adolescent mental health services (CAMHS) by the community paediatrician where ADHD was diagnosed. / 14
PUBLIC HEALTH - When patient A was diagnosed with meningococcal disease, the hospital reported this to the Consultant in Communicable Disease Control (CCDC) at the local Health Protection Unit (HPU). Chemoprophylaxis to stop carriage of the bacteria was offered to patient A’s immediate family at the hospital. Health protection nurses at the HPU undertook contact tracing which established that wider prophylaxis was not needed. Patient A had been attending nursery before he became ill, so the nursery were contacted by public health and advice was given to staff along with information provided for the parents of all the children who attend nursery with him. A blood sample was sent from the hospital to the Meningococcal Reference Unit (MRU) for laboratory confirmation by PCR. / 16
PERSONAL SOCIAL SERVICES (PSS) - At 21 years of age patient A began to live independently and had a personal assistant home care worker who was paid via direct payments. The home care worker helped patient A at home for 7 hours a week. / 21
EDUCATION LEARNING SUPPORT ASSISTANT - At three years of age, patient A attended nursery. Whilst at nursery, he had a learning support assistant to help him with his mobility and he continued to need this support throughout his schooling. Before attending nursery, the community therapists would visit his home regularly to provide his parents with an exercise programme to build up his strength and weight bearing through his legs. Once he attended school, however, the therapists performed school visits and part of the learning assistant’s role was to ensure that patient A completed certain strengthening exercises as part of his school day. TRANSPORT - Patient A was unable to walk for long distances unaided so he was entitled to free transport to and from school. SPECIAL EDUCATIONAL NEEDS (SEN) STATEMENT - Patient A had a special educational needs statement because of his physical disabilities and his ADHD. As part of the statementing procedure his statement of SEN was reviewed by the school and a SEN Officer from the Local Authority annually. Patient A had complex needs regarding statementing. He was issued with the statement aged five and no changes were required before issue. There was a review every year until he reached 18. Three of these reviews lead to changes in the statement. SPECIAL ADAPTATIONS AND EQUIPMENT - Patient A had his own specially adapted bathroom at primary school equipped with a ceiling hoist, grab rail, closimat toilet and adapted sink. He had a therapy bench as an exercise aid. He also had a specially adapted bathroom when he went to secondary school. / 23, 25 & 26
OTHER COSTS TO GOVERNMENT Patient A was one of two children in a two parent family. When he became ill, one parent gave up work to care for him, which put a financial strain on the family. Because of the family's altered circumstances, they were entitled to certain government grants and benefit payments. Patient A went on to further education age 18 and completed a three year educational course. At age 21 he moved out of home into rented accommodation and got a part-time job. His employment opportunities were restricted because of his disabilities. He worked 16 hours a week until he retired at age 65. Because of his disability and restricted income he was eligible for certain benefits.
Costs were divided into three separate categories: direct costs i.e. government payouts which fund a particular resource such as an adapted car or house adaptations, indirect costs, and transfer payments i.e. benefit payments. / 27

Patient B Scenario Description

DESCRIPTION / Table No.
PATIENT B - A SEVERE CASE OF MENINGOCOCCAL MENINGITIS / ACUTE CARE - Patient B was 3 years old when her mother took her to the GP with a fever, scanty petechial rash, reduced conscious level and a bulging fontanelle. She was rushed to hospital via 999 ambulance with suspected bacterial meningitis. From the Emergency department she was transferred to the paediatric intensive care unit (PICU) of the regional tertiary centre by a retrieval team. She had raised intracranial pressure and intractable seizures and required ventilation and intubation. Acute hydrocephalus was immediately treated by insertion of an external ventricular drain and later by insertion of a shunt. She required prolonged airways management for neurological complications, including repeated seizures. Patient B spent 26 days in PICU. Once stable she was transferred to a paediatric ward where she spent some recovering before moving to a neuro-rehabilitation unit for five months of daily therapy. / 4
OUTPATIENT APPOINTMENTS - Once discharged from hospital, patient B had regular follow up appointments with the hospital doctors who treated her in the acute stage. Patient B had been left with severe neurological damage, including severe cognitive deficits, epilepsy, severe hemiplegia, homonymous hemianopsia, communication problems and profound deafness. Although patient B eventually learned to walk, this was only for very short distances. This meant that she was predominantly a wheelchair user and had problems with her posture. / 6
COMMUNITY MEDICINE - Patient B was 3 years old on discharge from hospital and needed regular and frequent care. She received regular home visits from community health professionals until she started school full time. / 8
SPECIALIST EQUIPMENT - Once patient B was discharged from hospital, certain special equipment was provided for the home to help with mobility, day to day activities and her posture. / 10
PUBLIC HEALTH - The hospital reported the diagnosis of bacterial meningitis to the Consultant in Communicable Disease Control (CCDC) at the local Health Protection Unit (HPU). Chemoprophylaxis to stop carriage of the bacteria was offered to patient B’s immediate family at the hospital. Health protection nurses at the HPU undertook contact tracing which established that wider prophylaxis was not needed. Microbiological samples were sent to the Meningococcal Reference Unit (MRU) for PCR and culture to identify the bacteria responsible for patient B’s illness. / 17
COCHLEAR IMPLANTATION - Patient B was profoundly deaf and was referred to the cochlear implant team as soon as possible for bilateral cochlear implants. To be successful, cochlear implantation following meningitis needs to be carried out within months of the acute illness. Once she had had the initial implantation operation, she became a lifelong outpatient of the cochlear implant centre as ongoing care and technical support is required. / 15
GENERAL HEALTH PROBLEMS - When patient B initially returned home from hospital she was in a lot of pain and was given medication daily to help relieve this. She also required medication to assist bowel movement because she was very constipated. Patient B’s brain damage meant that she was doubly incontinent. / 18