“Assessment tool for the quality of hospital care for children with LLA”

“Assessment tool for the quality

of hospital care for children with LLA”

DOTTORANDO: ENKELEIDA THARTORI TIRANA-ALBANIA

TUTORI: GIULIO ANDREA ZANAZZO TRIESTE-ITALY

GIORGIO TAMBURLINI TRIESTE-ITALY

June 27-28, 2012

TIRANA, ALBANIA

World Health Organization

Regional Office for Europe

Weltgesundheitsorganisat ion

Regionalbüro für Europa

Organisation Mondiale de la Santé

Bureau Régional de l'Europe

Assessment tool for the quality

of hospital care for children with LLA

®Acknowledgments

This tool is a revised and updated version of the assessment tool of a

paediatric hospital care in oncohematologic department, it is developed by

WHO CAH in 2001 and since then widely used globally. The first revision was

made by Dr. Giorgio Tamburlini (Institute for Maternal and Child Health “Burlo

Garofolo”, Trieste, Italy – WHO Collaborating Centre for Maternal and Child

Health) in a consultative process with the WHO Regional Office for Europe.

Table of contents

Introduction...1

General information...3

1. Information system and medical records...5

1.1 Availability of relevant information...5

1.2 Quality of medical records...5

2. Essential drugs, supplies and equipment...8

2.1 Drugs and chemotherapy drugs for LLA...8

2.2 Equipment and supplies...11

2.3 Standards for drugs, supplies and equipment...13

3. Laboratory support...15

4. Emergency care...18

4.1 Lay out, patient flow and staffing...18

4.2 Standarts of structure and staffing in the oncologic department……….21

5. Oncohematologic department facilities...25

6. Case management of LLA...29

6.1 Hemorrhage...29

6.2 Anemia...31

6.3 Fever Conditions...32

6.4 Pain in LLA children...36

6.5 Neurotoxicity...38

6.6 Metabolic complications and other conditions...41

7. Child friendly services...43

8. Monitoring and follow up...48

9. Guidelines and auditing...51

10. Access to hospital and feedback to primary health care...53

Annex 1...56

Mothers’ and other carers’ view on patients care...56

Annex 2...62

Health workers interview...62

Summary evaluation score...70

Debriefing and action plan...71

Main References...72

Introduction

This assessment tool helps to evaluate the quality of care (QoC) for children in oncohematologic department especially for those with LA (LLA and LAM), based on standards derived from the WHO Pocket Book of Hospital Care for Children, and, in a limited number of areas not included in the WHO Pocket Book, from international guidelines (see Main References) and protocols for onco- haematologic diseases from AIEOP-ITALY

It includes a series of forms to collect:

- general information on the physical structure of the paediatric

oncohematologic department, and, when appropriate, outpatient and day hospital;

- information on available equipment, drugs and supplies;

- information on (about?) management of common conditions which are usually dealt with the onco-haematologic paediatric department in specialized hospitals (tertiary care), including essential surgery when appropriate ex; CVC and sedation protocol

- views of staff and mothers/carers of sick children.

The information will be collected from four different sources of information:

hospital statistics, medical records, direct observation of cases, and interviews with staff and with mothers/caretakers. Through the combination of information from different sources the tool allows to build an overall diagnosis of the quality of care and to single out those areas that are most critical and in need of action to improve QoC.

A scoring system is proposed to identify the most critical areas: 3 = good quality of care according to international standards; 2 = need for some improvement to reach standard care (suboptimal care but no significant hazard to health); 1 = need for substantial improvement to reach standard care (suboptimal care with significant health hazards, e.g. omission of evidence based interventions and use of diagnostic and treatment which are not effective according to international standards and may also be potentially harmful to children); 0 = need for very substantial improvements (totally inadequate care and/or harmful practice with severe hazards to the health of these children).

Summary tables are included in each section to facilitate a quick synthesis of the findings, and a summary evaluation sheet is included to provide an overview of the situation, monitor department improvement over time and make inter-department comparisons when appropriate. All sections leave some space for comments by the assessors and for relevant additional information.

The assessment will be conducted by external assessors, usually two, at least one should have a significant experience in onco-haematological clinical paediatrics and be totally familiar with the reference protocols for LA.

Information(s) regarding sections 1 to 4 should be collected before the

assessment then analysed before the visit and whenever possibly checked

during the direct visit. It is suggested to spend as much time as possible on the

onco-haematological paediatric department to gain first hand information by direct observation, especially on the case management of LLA and LAM. Also, the assessors should check the existence and contents of clinical protocols, and whether the drugs and equipment listed are available.

We emphasise that the assessment is an exercise which is part of the initiative to help the only paediatric oncohaematological department in Albania to improve the quality of paediatric care, aimed at identifying areas of care that need improvement and a very clear definition of a program to intervene immediately in those areas that express really a huge lack.

The assessors should explain that they will also interview staff and mothers/carers about hospital routines for these children and practices and that they would like to observe care of as many patients as possible, already admitted as well as new arrivals.

The assessment will normally start with a tour of the onco-haematological department asking to be shown all areas that will be of relevance to paediatric care. In addition to the department the tour should include the following areas, when they exist: intensive care unit, pharmacy, laboratory, blood bank, radiology surgical department.

Observation over time is important and new arrivals and new admissions with LA to the hospital should be closely observed. It is an advantage if the hospital staff is asked to alert them when new patients arrive. The assessors should not interrupt, interfere or guide medical work in any way. It is important that they are allowed to move around freely and are free to interview parents and staff.

There is no time limit to the assessment and the more observations the better.

Allow for sufficient time to prepare the findings for presentation. Transfer all findings on the summary sheet of findings and action for discussion. A feedback meeting held at the end of the assessment is aimed at involving staff in discussing the findings as well as the suggested actions. Standards and assessment tools are essential but not per se sufficient to promote a sustained effort to departments quality improvement. A crucial component of quality development is represented by the commitment of hospital managers and health professionals. By its participatory nature and particularly through its final session, which is clearly inspired by a problem-solving approach, the process is aimed at building awareness about the existence of quality issues and the potential for improvement. The tool includes a suggested framework for final discussion and identifications of tasks and responsibilities of the various staff members and levels. The focus on case management of a child suffering of LA and organisational issues rather than on structure and staffing is crucial to promote the idea that substantial change is possible without major external input and resources.

Interviews with mothers about the quality of care provided to them and their

children clearly represent a novelty to most professionals. Incorporating the

views of mothers on several aspects of care is per se a way to promote child,

mother and family-friendly attitudes among staff, as well as awareness among

mothers and children about their own rights.

After assessing the planned sample of facilities the assessors prepare a report

summarizing findings and recommendations. The assessment process might be

included into a national quality improvement programme, or it might be done

by interested health authorities at UHC “Mother Teresa” and MOH involving the

onco-haematological paediatric department hospital walk-through observation . After

a predefined period of time, the assessment can be repeated to document

improvement.

General information

Source: walk-through observation, and interviews with chief /staff onco-haematological department

Instructions: Collect informations on numbers and time. Several questions have space for you to describe your answer in more detail .

Date of assessment: ... June 27-28

2012

Name of interviewer(s).. Dott. Giulio Andrea Zanazzo

Paediatrician in oncohematologic service of IRCCS “Burlo Garofolo”-Trieste,Italy Name of the health facility University Hospital Center “Mother Teresa”-

Oncohematologic Pediatrician Service District... Tirane, Albania

Type of hospital (district, regional etc.)…National………:……….

Layout of health facility

Does the health facility have a separate outpatient

department? Y  N,x

Comments ...

……...……

Is the paediatric outpatient separate from the

adult outpatient department? Y,x N

 Comments ...

……...

Does the health facility have a separate

emergency department? Y,x N



Is it open 24 hours? Y,x N

 If not, what hours is it open? …………

… Does the health facility have a department for

admitting children? Y,x N



If so, how many beds?

2 in Day Hospital…

16 in ward……

……

Does the health facility have a transplantation

unit for children ? Y  N,x

If so, how many and describe?

Does the health facility have a separate room or areas for admitting the LA children in critical condition requiring special or intensive care admitted (isolation area or rooms)?

Y,x N



If so, how many beds?

… 7………

…

…………

… Describe: One room with a single bed with oxygen, central venous line pump, monitoring devices; 3 rooms with double bed in separate area

Does the health facility have a separate room to got different procedures (CVC, bone marrow aspiration.. etc)? (in general paediatric department, in paediatric surgical department, in oncohaematologic department, others)

Y,x N



Describe: Bone marrow aspiration, Lumbar punction.

Blood samplings, Sterile medications are performed in a dedicated room in Oncohematologic Department

Is a dedicated nurse available 24 hrs per day on

children's onco-haematologic department? Y,x N

 Describe: There are 5 nurses present in ward during the morning and 2 others in the DH; afternoon time (13-19h) there are present 2 or 3 nurses in the ward;

during the night shift only 2 nurses

Is there a dedicated doctor available 24 hrs per day on children's onco-haematological department?

Describe: During the morning (08-16h) only 3 dedicated doctors, in the afternoon or in the night, there are no dedicated doctor, but each of them does the night shift 3 or 4 times in a month.

Sometimes they are on calling service.

Y  N,x

Patient load

1. Information

system and

medical records

1. Source: routine statistics. This information should ideally be collected before the visit, and be available for reference during the visit. If it has not been collected before, collect the information early during the visit from the statistical office, chief nursing officer of the department, or hospital administration.

1.1 Availability of relevant information

Criteria 0 1 2 3 Comments

Availability of relevant statistics and information Existence and quality of

paper based information system on patient flow (admissions, outpatients, etc.)

X

Existence of computer based medical record system

X

1.2 Quality of medical records

Criteria 0 1 2 3 Comments

Medical records

Medical records are clear and legible X

0-14 years old LLA LAM

2005 23 8

2006 23 1

2007 19 3

2008 17 1

2009 33 5

2010 29 2

TOTALLY 144 20

AVARAGE 24 3.3

Medical records are dated X All admission and discharge of LA

children are clearly written in the notes

X

All drugs and treatments are clearly identifiable

X

Written informations about previous

admissions are available to staff X

Other relevant issues concerning information system (specify and comment) A total lack of nurses records

Summary:

Availability of relevant statistics and information

Criteria 0 1 2 3 Comments

Availability and quality of relevant

statistics X

Quality of medical records X

Main Strength Easy using and well completed of medical record

Main Weaknesses Totally lack of nurses record. There are lack of signature from the nurse who confirms the therapy administration.

Additional Comments Overall score for section

Summary score –

Availability of relevant statistics and quality of medical records Good To be improved

(to be circled) 3 2 1 0

2. Essential drugs, supplies and equipment

Source: This information should ideally be collected before the visit, and be available for reference during the visit. If it has not been collected before, collect the information early during the visit from the department and the pharmacist. If appropriate, add drugs .

2.1 Drugs

Please indicate the drugs available. Check for the actual availability of drugs and enquire with staff whether drugs are regularly available.(especially cytostatic drugs).

If some drugs are only available for sale (or only in certain conditions), or are expired make a note.

I.V. Solutions _{Always Common Rarely Never}

Glucose 30-50% IV _

Glucose 10 % IV _

Glucose 5 % IV _

Normal saline IV _

Ringer’s lactate IV _

Other solutions: KCl -10ml

vial, NaCl 10ml vial, ^

Ca Gluconat, Esafosfina

10g-100ml , etc… … ^

Emergency drugs Adrenalin or epinephrine

Atropina ^

Digoxin _

Corticosteroids _

Dopamine, Dobutamine,

Nifedipine ^

Furosemide _

Diazepam _

Phenobarbital _

Antibiotics/antimycotics/antihelmintic drugs (Supportiv Therapy)

Ampicillin _

Amoxycillin _

Amoxy-clavulanic _

1,2,3 Generation

cephalosporines ^

Other 4

generation Cephalosporins (Cefepime, Cefpirome etc…………..)



Antistaphylococcal-

(glicopeptids) ^

Vancomycina _

Teicoplanina (targozid) _

Fluorochinolon:

Ciprofloxacin, ^

Levofloxacin _

Aminoglycosid.

Gentamycin, amicacin ^{ }

Macrolides:Eritromycin,

clarithromycin ^

Azitromycin _

Cotrimoxazole (bactrim) _

Antiviral;Acyclovir,

Ganciclovir ^

Metronidazole(flagyl) _

Antifungals; Fluconazole/

Ketoconazole, voriconazol ^

Amphotericin B _

Cytotoxic(antineoplastic) drugs= Chemotherapy drugs in LLA

Vincristine _

Daunorubicine adriamycin _

Steroids: Prednison,

dexametason ^

Methotrexate os

Methotrexate ev ^

6 Thioguanina

6 mercaptopurin ^

Asparaginase :(L-ASP or

P-ASP) ^

ARA-C _

Ciclophosphamid _

Folinic Acid: Citrovorum

factor ^

Supportive drug therapy

Antiemitics: ondansetron,

granisetron(kytril) ^

Metoclopramide,

Proclorperazina etc ^

AntiH2, Ranitidine,

Cimetidine etc.. ^

Proton pump inhibitor:

Omeprasol, Lansoprasol ^

Filgrastim (Neupogen,

Peg-Filgrastim) ^

Sedation drugs

(propofol…, midazolam) ^ Allopurinol

Rasburicase ^

Blood support therapy Hemotransfusion



Fresh frozen plasma FFP



Platelets mass or by apheresys



2.2 Equipment and supplies

Source: This information should ideally be collected before the visit, and be available for reference during the visit. If it has not been collected before, collect the information early during the visit from the oncohaematologic department and the store.

Is the following equipment available in on the department, or in the pharmacy or store? Check the information obtained in advance during the visit to the department and to the pharmacy. Ask the person in charge of the area/department for the items to be shown to you, and check that they are kept safe and in good working order. Check that the size are adequate for use in infants and children.

Department Pharmacy / store

hospital

Comments

Resuscitation table/ couch Resuscitation bag

Torch ^

Otoscope ^

Scales for children ^

Measuring board to measure length and height (lying/ standing according to age)



Stethoscopes ^

Thermometers ^

Oxygen Source

oxygen cylinder central

supply ^

Flow-meters for oxygen ^ Equipment for the

administration of oxygen ^ Indicate

which equipment you use:

(please tick)

nasal prongs ^

Masks ^

Blood pressure cufs _

Oxygen saturimeter 

Masks

 infant size  child size

 adult size



IV-giving sets with chambers for paediatric use?



Lack of CVC

Biological Safety

Cabinets(cover drugs) for hazardous drugs.



Butterflies and/or cannulae

of paediatric size? ^

CVC equipment?

Totally implanted tunnelized

Indicate type of CVC set

Lumbar needles ^{}

Bone marrow needles ^{}

Needles for bone marrow biopsy

 not at all evident

Colors for smears ^



Glass for blood smears ^{}

Functional X-ray

equipment ^{}

Ultrasound equipment,

CT-scan ^{}

RMN 

Echography ^

ECG

……….. ^

Flexible bronchoscopy and

BAL Not at all evident

EEG ^

Optic Microscop ^{}

Cytocentrifugal equipment 

2.3 Standards for drugs, supplies and equipment Standards

- Availability of drugs

- Availability of supplies and equipment

Use the information collected in the previous sections to score the various items in this section.

Criteria 0 1 2 3 Comments

Availability of drugs

the essential drugs in list for LLA exists



Drugs on the list are adequate for the management of LLA disease.

x x

Essential drugs are available on the department and in the emergency area and immediately accessible

x

Drugs are never expired x

Oldest drugs are used first x

Availability of supplies and equipment Essential equipment is immediately available for use.

x Essential equipment is safe and in

working order



Essential supplies are available immediately, and are adequate for use in children with LLA

x

Summary:

Essential drugs, supplies and equipment

Criteria 0 1 2 3 Comments

Essential drugs are available and are

not expired ^X

Essential equipment is available and in

good working condition ^x

Adequate equipment is available on

the department. ^x

There is an adequate range of I.V.-

fluids and CVC procedures ^x

Adequate X-ray and Echo equipment

are available and in good condition ^x

Main Strengths

_________________________________________________________________________

Main Weaknesses:

Chronic lack of antiblastic drugs, a relative poor existence of supportive drugs.

CVC totally inexistence does not allow to apply a median or high intensity of chemiotherapy like the updating protocols suggest.

Additional Comments:

Knowing this context, the family of an ill child must buy by themselves the most of drugs outside of hospital, in a private store or pharmacy.

Overall score for section

Summary score – Essential drugs, supplies and equipment Good To be improved

(to be circled) 3 2 1 0

3. Laboratory support

Source: This information should ideally be collected before the visit and be available for reference during the visit. If it has not been collected before, collect the information early during the visit from the laboratory and chief laboratory technician .

Check whether the essential laboratory investigations are promptly available (e.g. Hb, total blood count, ). If available sign time to get results

Laboratory Test available ^Not available Time to

get results Comments

Total blood count with formula ^ Citomorphology of peripheric

blood ^

Central Laboratory

Reticolocyte ^

Blood grouping and crossmatch ^

Bilirubin total and direct ^

Alt, Ast, gamma-GT ^

PCR, VES, Procalcitonina ^ No Procalcitonin

Ferritin blood test ^

LDH, ALP, Proteinemia ^

Blood glucose ^

Serum creatinine, azotemia, ^

Acid uric test ^

Pancreatic amylasemia ^

Cholesterol, Triglicerid ^

Electrolytes:Na, K, Cl, P, Ca, Mg ^

INR, APTT ^

Fibrinogeno, Antitrombine III

D-dimero ^

Methotrexatemia _

CSF citomorphology ^ Central Laboratory

EmoGasAnalysis ^

Urine microscopy ^

Stool culture ^

Blood samples, culture of central

venous line ^

Urine culture ^

Serologie for EBV, Hepatitis B,

CMV, Parvovirus ^{ } EBV, CMV, Parvovirus only in

private way, not in the hospital

Bone Marrow citomorphology _

Citochimical test of bone marrow ^

Immunophenotip of blastic cells _{ 4 hours}

Genetic Analyses, genotips of

bone marrow ^

Translocation t (9;22),

philadelphia chromosome, Ph+ ^

Summary:

Laboratory support

Criteria 0 1 2 3 Comments

Essential laboratory tests are always available and their results are delivered timely to the Oncohematological department

x Time to get the results is the biggest problem. This is due to:

1. It is not an adequate or perfect system of administration and organisation of hospital laboratory service.

2. Many tests are performed outside of hospital service

Financial barriers do not deprive patients of the use of essential laboratory test to put the dg of LLA (either they are free of charge, or there are exemption schemes in place for) uninsured children)

x

Main Strengths Main Weaknesses:

1. It is a high impossibility to treat patient with high doses of Methotrexate in such conditions like; HR LLA, OSTEOSARCOMA…etc

2. A high impossibility to isolate the kind of a germ in an infectious condition in operative time.

3. A high impossibility to make the diagnosis by identifying the basic risk factors such as: exp

PH+LLA… etc

Additional Comments:

Overall score for section

Summary score – Laboratory support Good To be improved

(to be circled) 3 2 1 0

4. Emergency care

4.1 Lay out, patient flow and staffing

Source: Visit to the department and interviews with staff dealing with LLA children. Interview staff about when emergencies would present, who would see them; how senior staff are called, and where and how severe conditions are handled.

The LLA patients with an emergency medical or surgical condition do they received the care in the department?

…………yes……….………

Describe patient flow of a typical emergency of LLA (patients with LLA presenting as an emergency to hospital)

……….………

How are handled the outpatient (day-hospital) in your department (i.e. patients presenting normally to the day-hospital, but severely ill)?

They have the appointment describing by the doctor

……….………

Describe patient flow for a month in the oncohematologic department.

It depends from the patient flow, the season, but a full service is of 18-een patient Is there any system in place to prioritize severely LLA children in critical

condition? Y No, x

If so, describe: .………

Is there single rooms or management area equipped to take care of these

children? A sedation room? ^ N

If so, describe: There is only a sedation room where the main procedures are done, named the Nursing Room

Is there a separate area with filtrate air for these children? Y No, 

If so, describe: .……….

Does you have a separate room or area in the department for preparing the

drugs that are cytotoxic(for antineoplastic drugs)? Y  N 

If so, describe: .The antineoblastic drugs are prepared in the nursing room not in a dedicated

room .

Do patients come with referral notes when they have been referred from first or second level units?

 never  sometimes  always

Comments: .……….……

Are there any job aids (wall charts, chart booklets) displayed for the

management of the children with LLA or oncological paediatric care? Y N 

If so, describe about what, and comment on adequacy:………

Distance from the room where is settled the child to the other area;

Is there A single room with its own toilette? ....yes...

In another medical area, distance ...

Distance from principal gate of hospital to the oncohematologic department;:

The department has its own gate directly? ...yes...

This concerns staff who are immediately available to deal with LLA children and their level of training

Type of staff

during working

hours

Present/

not present If present, number

night working

hours

Present/ not present If present,

number

Trained in assessment/

detection of care in a LLA child

Yes/No

Trained in management

of oncological

conditions

Yes/No

Remarks

Gateman 2 0

Admin.ve

staff 0

Nurse (generic)

16 Nurse/day (paediatric)

5 2-3

Auxiliary 3 0

Medical officer (generic)

0 0

Medical

officer 3 1 1/3 yes

(paed

specialist)

4.2 Standards of structure and staffing in Oncohaematological Department Standards

- Layout and structure available for the treatment of LLA - Drug, supplies and equipment (chemotherapeutic drugs) - Staffing

- Case management - Transplantation unit - Palliative care

Criteria 0 1 2 3 Comments

Layout and structure

Children are assessed for severity/ priority signs immediately on arrival

X

Patients do not have to wait for registration, payment, their turn etc.

before a first assessment is done and action taken

X

A wall chart or job aid for identifying children by severity of condition is located in the emergency admissions area

X

Drug, supplies and equipment

(see below) Essential drugs for emergency conditions and chemotherapeutic treatment of LLA are always available and free of charge to the family

X

Essential lab tests ( Hb or Hct, biochemical test, BM morphology) are available and results are obtained timely

X

Essential equipment (needles and syringes, lumbar needle, needle for bone marrow aspiration, nasogastric tubes, oxygen equipment, self inflating resuscitation bags with masks of different sizes,) is available

X

Staffing

A qualified staff member is designated to carry out the LLA child

X

1

Drugs, supplies and equipment

Please refer to the tables above. Please note when judging the adequacy of supplies that some drugs (e.g. oxygen,

anticonvulsants) need to be immediately available, whereas for others (e.g. antibiotics) it suffices if access is assured.

A health professional is available without delay to manage the children determined to have an LA

X

Case management

(see below)

Staff doing oncologic conditions is trained in the guidelines and protocols of LLA and can implement them appropriately during peak hours

X

Staff is skilled in the management of common LA conditions and starts treatment without delay: management of hemorrage, strong pain, severe shock and severe chemioterapeutic complications etc

X

Transplantation Unit

The hospital offer the transplantation of human cells for LLA children who have the criteria for it

X

Palliative care

There is this approach that improves the quality of life of these children and their families

X

Assessment and treatment of pain and other problems, physical, psychosocial and spiritual

X

Summary:

Structure, equipment, drugs and case management of LLA in the department

Criteria 0 1 2 3 Comments

Layout and physical structure of the

oncohematologic department ^X

Adequate staffing dedicated to LLA ^X Availability of essential drugs for LLA ^X

Availability of essential laboratory

support for LLA ^X

Possibility of cells transplantation ^X

2

Case management of emergency conditions of LLA

- Information is obtained by case observation of cases presenting, as far as possible, and through interviews with staff about the routine practice. If you cannot observe 1-2 cases, describe scenarios to staff of 2-3 cases with hemorragies, severe shock (described in assessor’s guide).

- Cases include children presenting with LLA or LAM. Case management is observed during working hours and

after hours. If no cases with emergency conditions present, staff is interviewed about how they would manage such

conditions. Inquire about the management of a LLA child.

Offering a palliative care in time ^X Availability of essential equipment including microscop, CVC, sedation used

in LLA _X

Main Strengths 1. Staff level

Main Weaknesses 1. Hand Washing 2. Pain Control

Additional Comments

________________________________________________________________________________

Overall score for section

Summary score – structure, equipment, drugs and management

of LLA Good To be improved

(to be circled) 3 2 1 0

5. Oncohematologic department facilities

Source: Observation during the visit to the department, and interviews with staff and guardians of patients.

How many beds does the department have? ……23 beds………

Which age groups are admitted to this department? _0___ to 15__ years

Check the following

Where is the toilet and there is a source of warm water? ……there is not a source of warm water………

Is the toilet clean? Y  N,x

Are the beds safe and well maintained? Y,x N 

Are there mattresses? Y,x N 

Do patients receive bed linen? Y,x N 

Are the beds clean? Y,x N 

Is there an emergency management area in or near to the department? Y,x N 

Is there a heat source on the department? Y,x N 

Are mosquito nets available for use of patients? (if relevant) Y,x N  Comments and observations:

.……….………..

Standards

- Separate and single room for each child.

- In every room the presence of the toilette . - Hygiene and accident prevention

- Sufficient services for mother and child

- Closest attention for the most complicated seriously in threatened condition for LA children.

Criteria 0 1 2 3 Comments

Separate room for children

Children are kept in a separate room or separate area of a department

X

Severely ill children are kept apart from the others in departments such as for infectious diseases or intensive care

X

Children with surgical conditions are at least kept in a separate room, with staff aware of the special needs for children such as feeding and warmth.

X

In cold climates, the department has an efficient and safe heat source

Hygiene and accident prevention

The department is kept clean and staff has access and use regularly hand washing facilities

X

Sharps are disposed of in a special container preventing accidents and dangerous items are inaccessible for children

X

Sufficient services for mother and child There are sufficient and adequate toilets which are easily accessible

X

The mother has access to running water and to an appropriate space, near the department, to wash herself and to cook

X

Patients are kept in a bed/cot with a clean mattress

X

Patients receive bed sheets ^X

Closest attention for the most seriously ill children The most seriously ill children are cared

for in a section where they receive closest attention

X

This section is close to the nursing station so that children can be directly observed most of the time.

X

Summary:

Oncohematologic Paediatric Department facilities

Criteria 0 1 2 3 Comments

Separate room for children ^X

Hygiene and accident prevention ^X Sufficient services for mother and child ^X Closest attention for the most seriously ill

children ^X

Main Strengths

________________________________________________________________________________

Main Weaknesses

________________________________________________________________________________

Additional Comments

________________________________________________________________________________

Overall score for section

Summary score –Oncohematologic Paediatric Department

facilities Good To be improved

(to be circled) 3 2 1 0

6. Case management of LLA

Source: This information should be collected by observing the treatment and care of children with the relevant condition and interviewing staff and carers.

Please Note: the page-references refer and to the protocols and guidelines uses by AIEOP- ITALY.

6.1 HEMORRHAGE Standards

- Assessment of severity

- Administration of appropriate transfusion - Use of PLT level as a strong criteria - Assessment of general condition

Summary:

HEMORRHAGE

Criteria 0 1 2 3 Comments

Assessment of hemorrhagie, ( hematemesis, melena, epistaxis etc) is correctly done

X

Administration of appropriate PLT and Blood transfusion if is necessary

PLT< 10000 in basal condition ^X

Not Endoscopy

Transfusions are not always available Tranexanic acid and tamponade in supportive care

PLT< 20000 in fever condition ^X The amount of PLT and the time of

infusion are correctly use ^X

Supportive care provided appropriate for

condition (from section ) ^X

Patient monitoring appropriately

performed and charted (from section ) ^X

Main Strengths

________________________________________________________________________________

Main Weaknesses

________________________________________________________________________________

Additional Comments

________________________________________________________________________________

Overall score for section

Summary score – Hemorrhage condition in LLA Good To be improved

(to be circled) 3 2 1 0

6.2 ANEMIA Standards

- Assessment of Anemia

- Management according to transfusional plan - Use of Hb and Hct level as a strong criteria -

Criteria 0 1 2 3 Comments

Assessment of Anemia

The degree of Anemia is assessed in all patients with LLA

X

Anemia is correctly classified based on recommended criteria according to AIEOP support therapy of LLA guidelines

X

Children with severe anemia are properly assessed and supported in time.

X

Management according to transfusional plan The correct transfusional plan is chosen based on the assessment of Hb.

X It’s used total blood instead of packed red cells.

Infusion rate it is not reported in clinical records

Anemia is correctly managed if Hb< 8g/dl ^X The amount of blood and time is correctly

calculated.

X

Signs of any blood reaction are correctly assess

X

Blood intake and rate of infusion are monitored and adjusted if necessary

X

Summary:

ANEMIA

Criteria 0 1 2 3 Comments

Assessment of anemia ^X

Management according to Hb levels. ^X Use of blood transfusion izogroup and

izoRh ^X

Main Strengths

1. Properly Monitoring

Main Weaknesses

1. Utilisation of component of blood is anappropriate

Additional Comments

________________________________________________________________________________

Overall score for section

Summary score –Anemia Good To be improved

(to be circled) 3 2.5 2 1 0

6.3 Fever Conditions Standards

- Differential diagnosis and investigations

- Diagnosis and management of SNC disease or leuchemic meningitis

- Diagnosis and management of fever in sepsis condition, in neutropenic child(N<500-1000) - Diagnosis and management of nonseptic fever (prolonged one)

- Appropriate management of fever

Criteria 0 1 2 3 Comments

Differential diagnosis and investigations Appropriate assessment undertaken for all children with LLA with febrile conditions

- History - Examination

- Laboratory X

X X

Appropriate examinations are undertaken to establish a diagnosis and to assess the severity.

X

Diagnosis and management of fever in sepsis, neutropenia(N<500-1000)

Examination; routine and VES, PCR, Procalcitonina and all the other standart

X

Blood culture, bucal and faringeal tampon, rectal tampon,

Urine complet, Stool culture

X

Sierologic examination for any virusal or fungal infection,

Rx thoracal and Rx. Sino-maxillar

Echography of abdomen

X

X X

Appropriate patient monitoring is performed and charted

- state of consciousness - respiratory rate and diuresis

- pupil size and blood pressure X X

X

Diagnosis and management of fever in no neutropenic fever Serologic examination for any virus or

fungi infection

Rx of thorax and Rx of seno-maxillar region

Echography of abdomen..

CT-Scan

X

X

X X

Blood culture are not performed

The etiological diagnosis is made through correct interpretation of the examination

X

If urgent , antibiotic treatment is started if N<500-1000

X

Appropriate antibiotic treatment is given (timing, dosage, choice of antibiotic in relation to likely pathogenic bacteria and age, duration)

X

FEVER conditions are correctly diagnosed and treated

- in neutropenia (septic condition) -in non-septic condition (prolonged one)

X

X

- Proteina C Reactiv (PCR) range 0-0.5 mg/dl

- Procalcitonin (PCT) range <0.5 ng/dl; low risk for grave sepsis or septic shock

> 2ng/dl; high risk for a grave sepsis or/and septic shock

Summary:

Fever conditions

Criteria 0 1 2 3 Comments

Differential diagnosis and investigations

of a fever in LLA child ^X

Diagnosis and management of SNC Disease or leuchemic meningitis

Diagnosis and management of fever in

neutropenia(N<500-1000) ^X

Diagnosis and management of fever in

non septic condition ^X

Appropriate management of septic fever ^X Assessment and management of other non

septic fever ^X

Main Strengths

________________________________________________________________________________

Main Weaknesses

1. there are not performed always the hemoculture test 2. it’s not at all performed the Procalcitonin

Additional Comments

________________________________________________________________________________

Overall score for section

Summary score – Fever conditions Good To be improved

(to be circled) 3 2 1 0

6.4 Pain in LLA children Standards

- Use of standart scales to assess the pain like; EDIN, FLACC,CHEOPS, VAS etc - Management of pain according tipological, duration, etc

- Management of pain using the drugs 1. non oppioid and 2. oppioid

Criteria 0 1 2 3 Comments

1. severity of pain is correctly assess ^X

2.approppriate drugs for pain are correctly administered

 there are present the non opioids drugs,

Paracetamol, NSAID-s

X

 there are present the opioid drugs;

weak opioids, Codeine, Tachidol strong opioid; morfine, petidine etc

X

X

3. Cefalea is one of the main pain and it is correctly assessed and treat

X

4. Parents and older children are appropriately advised on how to start treatment at home.

X

5. Procedural pain are correctly prevented ^X

Summary:

Pain in LLA children

Criteria 0 1 2 3 Comments

Severity of pain correctly assessed ^X Appropriate drugs for pain are correctly

administered ^X

Management of cefalea X

Main Strengths

________________________________________________________________________________

Main Weaknesses

1. often, analgesic drugs are buying outside of hospital by parents 2. there are no prevention for procedural pain

Additional Comments

________________________________________________________________________________

Overall score for section

Summary score –PAIN Good To be improved

(to be circled) 3 2 1 0

6.5 NEUROTOXICITY Standards

- Diagnosis and adequate treatment of:

- Intracranial hemorrhage - Jatrogenic encephalopathia - Peripheral Neuritis

Criteria 0 1 2 3 Comments

Diagnosis and treatment of neurotoxicity Adequate evaluation of intracranial hemorrhage with CT-Scan

X

Adequate diagnosis of PRES with RMN ^X Adequate treatment of seizures, peripheral

neuritis,etc

X

Summary:

NEUROTOXICITY

Criteria 0 1 2 3 Comments

Adequate diagnosis of neurotoxicity X

Adequate treatment of neurotoxicity X

Main Strengths

________________________________________________________________________________

Main Weaknesses

________________________________________________________________________________

Additional Comments

________________________________________________________________________________

Overall score for section

Summary score –NEUROTOXICITY Good To be improved

(to be circled) 3 2 1 0

6.6 METABOLIC COMPLICATIONS and other conditions

Standards

- Assessment and treatment of tumor lisis sindrom - Seizures and coma

- Mellitus diabet and HTA . - Osteonecrosis aseptica

- SIADH (inappropriate secretion of ADH) - Profilaxy of CVC infection

Criteria 0 1 2 3 Comments

Assessment and treatment of tumor lisis syndrome All patients are covered to prevent the

nephropatia from uric acid.

X

Appropriate measurement of

methotrexatemia is done

X

Appropriate complementary treatment of high dose of MTX is done.

X

Seizures and coma

Appropriate patient monitoring is

performed and charted ^X

These complication are treated appropriately

X

Mellitus diabet and HTA

Appropriate diagnosis and treatment of Mellitus diabet

X

Appropriate assess of blood pressure and treatment of HTA

X

Osteonecrosis aseptic

Appropriate dg. with several examination such as; rx of femoral, humeral bones

X

Appropriate treatment ^X

SIADH Inappropriate secretion of ADH

appropriate assess of SIADH ^X Serum level of electrolytes are not available from the laboratory

Appropriate assess of renal function and serum level Na, osmolarity

X

Appropriate treatment of this condition ^X Profilaxy of CVC infection

appropriate use of medication through CVC

Eparinisation and sustitution of tape in aseptic condition

Summary:

Metabolic complication and other conditions

Criteria 0 1 2 3 Comments

Assessment and treatment of tumor lisis

syndrome ^X

Mellitus diabet and HTA ………. _X

Seizures and coma ^X

Osteonecrosis aseptic ^X

SIADH inappropriate secretion of ADH ^X

Profilaxy of CVC infection

Main Strengths

________________________________________________________________________________

Main Weaknesses

________________________________________________________________________________

Additional Comments

________________________________________________________________________________

Overall score for section

Summary score – Metabolic complication and other conditions Good To be improved

(to be circled) 3 2 1 0

7. Child friendly services

Standards

- Adoption of charter of children’s rights in hospital

- Mothers and carers are allowed to stay with child and participate in care - Information and counselling to mothers and familly

- Availability of facilities for mothers to rest, and take care of personal hygiene - Play opportunities for children

- Unnecessary painful procedure are avoided

- Unnecessary long admissions to hospital are avoided - Information and communication to children and adolescents - Privacy is ensured to older children and adolescents

Criteria 0 1 2 3 Comments

Adoption of charter of children’s rights in hospital The hospital has adopted a Charter of

Children’s rights in hospital and the charter is accessible and displayed in the department

X

The health care for these children should take into account that they got all dimensions of health including physical,mental,social,cultural, spiritual

X

Mothers and carers are allowed to stay with child and participate in care The mother or other caretakers should be

allowed to stay with the child at all time during the hospital stay

X

The mother is allowed to prepare and/or offer the food for her child (including expressed breast milk)

X

The mother administrates the oral drugs to her child, when appropriate

X

The mother is allowed the necessary logistical and organisational conditions to wash her child with aseptic solutions

X

The health personnel ask the mother about her child’s condition and she is encouraged to ask for staff assistance

X

Information and counselling to mothers /carers Health personnel listen to the mother’s

perceptions of the problems and needs of her child

X

The mother is informed about her child’s diagnosis and treatment to the level of her understanding

X

The mother receives health education and support, focusing on the care of the child during his/her hospital stay (the issues addressed are related to the child’s problem: frequency and quality of feeding, fever, steril conditions, importance of respecting the “rules”)etc having strong contact with other

X

Availability of facilities for mothers to rest and take care of personal hygiene The mother has access to the toilets,

running water and to an appropriate space near the department, to wash herself . ^X Mother has access to washing facility in

order to wash hers and her child clothes ^X The hospital provides food to the mothers;

alternatively, cooking tools and facilities (fuel, pots, space) are available ^X Play opportunities for children

There should be toys, books, etc, available to admitted children and there should be a designated play area

X

Unnecessary painful procedure are avoided Painful procedures, for both diagnostic and therapeutic purposes, are avoided when less traumatic alternatives are available

X

Blood tests are carefully planned to avoid multiple and repeated sampling if CVC is n

X

Unnecessary and unnecessarily long admissions to hospital are avoided Child are not admitted to the hospital in

absence of the following conditions:

- need for diagnostic work up for presenting signs and symptoms which include one or more severe sign as fever in basal or in neotropenia, cefalea etc

- need for parenteral fluids, parenteral antibiotics, oxygen therapy, nutritional rehabilitation, nursing and surgical care of wounds

- high risk of anappropriate treatment given at home

X

Child do not stay in the hospital if:

- are able to feed normally and have done the therapy without any complication

- more times after they have passed the oxygen support or, blood transfusion or parenteral antibiotics have been stopped

- reasonable care can be expected at home.

X

Information and communication with children and adolescents Doctors and nurses pay attention in

informing children about their conditions ^X Heath professionals have received training

on how to communicate to this children ^X Health care professionals discuss with older children and adolescents about their conditions and treatment and provide written materials to facilitate understanding and management

X

Presence of a psychologist and a sociologist in the department to help children and their familly appropriate to their age, developmental level and understanding

X They are only for children

Privacy for older children and adolescents Older children and adolescents have the possibility to be examined by doctor and communicate with doctors in a separate room

X

There are only women in the staff.

Adolescents have the possibility (if requested) to be examined by a doctor of the same sex

X

Summary:

Child friendly services

Criteria 0 1 2 3 Comments

Adoption of charter of children’s rights in

hospital ^X

They can’t avoid the long admissions in the ward not for the choice of a doctor but for their own social economic conditions.

Parents allowed in the department without restrictions in aseptic condition ^X Adequate information and counselling to

mothers and carers, especially for LLA ^X Adequate information and counselling to

children and adolescents ^X

Facilities for play X

Unnecessary painful procedure avoided ^X Avoidance of unnecessary and

unnecessarily long admissions to hospital ^X

Main Strengths

________________________________________________________________________________

Main Weaknesses

________________________________________________________________________________

Additional Comments

________________________________________________________________________________

Overall score for section

Summary score – Child friendly services Good To be improved

(to be circled) 3 2 1 0

8. Monitoring and follow up

Standards

- Nutritional status on admission - Monitoring of individual progress - Reassessment and monitoring by nurses - Reassessment of admitted children by a doctor - Follow up

- Immunisations status

Criteria 0 1 2 3 Comments

Nutritional status on admission

Weight height are measured and nutritional status is assessed in all LLA children

X

Monitoring of individual progress At the time of admission, a monitoring plan is prescribed according to the severity of the patient's condition

X

A standard monitoring chart is used with the following information: patient details;

vital signs; clinical signs depending on condition; treatments; chemotherapy IV fluids, feeding

X

Reassessment and monitoring by nurses Key risk signs are monitored and recorded by a nurse twice a day and at least 4 times a day for critically ill patients

X

Doses and time are recorded for medications and IV-fluids given by the nurse for all patients , cytostatics too.

X

Additional special monitoring is performed and recorded appropriately when needed to follow the progress of particular conditions: e.g. fluid balance (input – output in sepsis, chemotherapy complication,o2saturation, comascale for unconscious children etc

X

Nurses use the results of patient monitoring to alert the physicians of problems or changing patient status warranting their attention

X

Reassessment of admitted children by a doctor All patients are reassessed daily during

working days by a doctor ^X

Sick patients or new admissions are reviewed by a physician on weekends and holidays as well and in the right time

X

Follow up

If, needed, follow up is arranged before discharge in the health facility closest to the patients home that can provide the necessary follow up treatment whenever there is no indication for specialised care

X Only in the first discharge

All children receive a discharge note explaining their condition and providing information for the staff at the follow up facility

X

Immunisations status

The immunisation status of the LLA child will be done only by the prescription of the oncologist doctor that has done the treatment of this child after stop therapy.

X

Summary:

Monitoring and follow up

Criteria 0 1 2 3 Comments

Nutritional status, development _X Monitoring of individual progress _X Reassessment and monitoring by nurses _X Reassessment of admitted children by a

doctor ^X

Follow up X

Immunisations status _X

Main Strengths

________________________________________________________________________________

Main Weaknesses

1. Lack of nurses record 2. Incomplete medical record

Additional Comments

________________________________________________________________________________

Overall score for section

Summary score – Monitoring and follow up Good To be improved

(to be circled) 3 2 1 0