European Cystic Fibrosis Society-Clinical Trials Network & Cystic Fibrosis Europe: Quality of Life/Patient Reported Outcome Measures/Symptom Reported Tools Survey

Dear ECFS CTN Investigators/Clinical Psychologists/Members/Person with CF/Caregiver (Parent/Partner),

The following survey takes between 2 to 3 minutes to complete, your help would be greatly appreciated.

The European Cystic Fibrosis Society-Clinical Trial Network (ECFS CTN) Standardisation Committee and Cystic Fibrosis (CF) Europe are currently assessing Quality of Life(QoL)/Patient Reported Outcome Measures(PROMs)/Symptom Reported Tools in Cystic Fibrosis currently used during routine care, clinical visits/assessments.

Many clinics use a variety of both generic and CF-specific quality of life and symptom-report measures and tools and we are keen to assess those most commonly in use during routine care.
Thank you for completing this short survey, your responses will be anonymised and held in the strictest of confidence, thank you for helping us to assess this important aspect of patient and family care.

We will email all sites a completed report of results once the survey has been completed. This report will also be made available through the patient organisations via CF Europe.

Best wishes,

Kate and Elise

Kate Hayes ECFS CTN (k.hayes@qub.ac.uk)

Elise Lammertyn CF Europe

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* 1. Your Country

Austria

Belarus

Belgium

Bosnia Herzegovina

Bulgaria

Croatia

Czechia

Denmark

Estonia

Finland

France

Germany

Greece

Hungary

Ireland

Israel

Italy

Kosovo

Latvia

Leichtenstein

Lithuania

Luxembourg

Malta

Moldova

Montenegro

Netherlands

North Macedonia

Norway

Poland

Portugal

Romania

Russia

Serbia

Slovakia

Slovenia

Spain

Sweden

Switzerland

Turkey

Ukraine

United Kingdom

Australia

USA

Canada

Other (please specify)

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* 2. Respondent profile:

Clinicial Specialist/MD

Nurse

Research Coordinator

Clinical Psychologist

Physiotherapist

Social Worker

Dietitian

Other Allied Health Professional

I am a person with CF

Other (please specify)

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* 3. Site Name/Institution/Clinical Centre where you are being followed:

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* 4. Please specify if Adult/Paediatric/Combined Centre below:

Adult

Paediatric

Combined Adult/Paediatric Centre

not applicable

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* 5. Does your centre/or the centre you visit, use Quality of Life (QoL)/Patient Reported Outcome Measures (PROMs)/Symptom Report Tools (e.g. the CFQ-R questionniare) with patients during routine care, clinical visits?

Yes

If 'NO' Why do you not use these tools?
Is it due to lack of availability? Lack of time? Other? Please state in as much detail as possible:

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* 6. How often does your centre use/do you use QoL/PROMs during routine care?

Always

Usually

Sometimes

Rarely

Never

Please provide details:

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* 7. If Yes: what type of measure do you employ? (please tick all that apply):

Questionnaire/s

Patient/Carer Completed Diary

Other (please specify)

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* 8. Do you use any of the following QoL/PROMs/Symptom Reported Tools? (please note that not all tools are CF specific; please tick all that apply):

CFQ Cystic Fibrosis Questionnaire (Henry et al)

CFQoL (Gee et al)

CFQ-R Cystic Fibrosis Questionnaire-Revised (Quittner et al)

Treatment Adherence Questionnaire (parent-reported adherence)

Parent Symptom Diary (parent/carer reported)

Patient Symptom Diary (patient-reported)

CFRSD: CF Respiratory Symptom Diary (Goss et al)

CFRSD-CRISS: CF Respiratory Symptom Diary-Chronic Respiratory Infection Symptom Score

The Symptom Score System (Jarad et al)

MSASCF: Memorial Symptom Assessment Scale for Adults with CF

Self Management Questionnaire for CF (Bartholomew et al)

Self Care Independence Scale (Parent reported) (Patton et al)

CF Self-Care Practice Instrument (Baker et al)

The Perceived Health Competence Scale

Kidscreen 27

GAD-7 (Generalized Anxiety Disorder 7)

PHQ9 (Patient Health Questionnaire 9)

SF36 (Short Form 36)

HADS (Hospital Anxiety and Depression Scale)

EQ5D5L

SGRQ (St George’s Respiratory Questionnaire)

SNOT-20 (Sino Nasal Outcome Test)

CASA-Q (Cough and Sputum Assessment Questionnaire)

LCQ (Leicester Cough Questionnaire)

The Transitional Dyspnoea Index Scale (Aaron et al)

The Chronic Respiratory Disease Questionnaire (Wolter et al)

PedsQL GI (Paediatric Quality of Life Inventory Gastrointestinal Module)

The Brief Pain Inventory

The Pain Catastrophizing Scale

DAS 28 (Disease Activity Score) (for Joint Pain Assessment)

HAQ (Health Assessment Questionnaire)

The Schwarz Fatigue Scale

Cystic Fibrosis Coping Scale

The Body Test (Canadian Dietetic Association) (perception of body image)

Rosenberg’s Self-Esteem Scale

EAT-26 (eating attitudes survey)

Body Image Questionnaire

QWB (Quality of Well Being Scale)

NHP (Nottingham Health Profile)

Freiburg Questionnaire of Coping With Disease

‘Every Day Life’: German

Profil der Lebensqualitat chronisch Kranker

Fragebogen zur Lebenszufriedenheit

The Trier Coping Questionnaire

CDI and/or CDI-s (Children’s Depression Inventory/short version)

The Quick Inventory of Depressive Symptomatology

DASS 21 (Depression Anxiety Stress Scale)

MFQ-SF (Short Mood and Feelings Questionnaire)

Child Behaviour Checklist

Other (please specify and provide as much detail as possible)

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* 9. Following clinic visits/assessments, do you use/have you ever completed, a Patient Satisfaction Survey?

Yes

European Cystic Fibrosis Society-Clinical Trials Network & Cystic Fibrosis Europe: Quality of Life/Patient Reported Outcome Measures/Symptom Reported Tools Survey

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* 1. Your Country

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* 2. Respondent profile:

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* 3. Site Name/Institution/Clinical Centre where you are being followed:

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* 4. Please specify if Adult/Paediatric/Combined Centre below:

Question Title

* 5. Does your centre/or the centre you visit, use Quality of Life (QoL)/Patient Reported Outcome Measures (PROMs)/Symptom Report Tools (e.g. the CFQ-R questionniare) with patients during routine care, clinical visits?

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* 6. How often does your centre use/do you use QoL/PROMs during routine care?

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* 7. If Yes: what type of measure do you employ? (please tick all that apply):

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* 8. Do you use any of the following QoL/PROMs/Symptom Reported Tools? (please note that not all tools are CF specific; please tick all that apply):

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* 9. Following clinic visits/assessments, do you use/have you ever completed, a Patient Satisfaction Survey?

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* 10. Do you think a new PROM/tool would be useful?

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* 11. What topics would you like to see included in a new PROM/tool?

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* 12. Is there a particular target group you feel would benefit most from the creation of a new PROM/tool?

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* 13. Any other comments?