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Table 1 Overview of applied survey instruments and collected data for both the intervention and control group

From: A multi-centre, randomized, controlled trial on coaching and telemonitoring in patients with cystic fibrosis: conneCT CF

Survey instrument/collected data

t0

t1

t2

t3

t4

t5

Anthropometric data

IG/CG

 

IG/CG

IG/CG

IG/CG

IG/CG

Sociodemographic data

IG/CG

 

IG/CG

IG/CG

IG/CG

IG/CG

Clinical history

IG/CG

 

IG/CG

IG/CG

IG/CG

IG/CG

Clinical findings

IG/CG

 

IG/CG

IG/CG

IG/CG

IG/CG

Lung function test

IG/CG

 

IG/CG

IG/CG

IG/CG

IG/CG

Therapy plan

IG/CG

 

IG/CG

IG/CG

IG/CG

IG/CG

Pulmonary exacerbations since last study visit

IG/CG

 

IG/CG

IG/CG

IG/CG

IG/CG

Time period until first pulmonary exacerbation since beginning of study intervention

   

IG/CG

IG/CG

IG/CG

Time between pulmonary exacerbations since last study visit

IG/CG

 

IG/CG

IG/CG

IG/CG

IG/CG

CF-associated hospital admissions since last study visit

IG/CG

 

IG/CG

IG/CG

IG/CG

IG/CG

Days absent from work or school since last study visit

   

IG/CG

IG/CG

IG/CG

CF-associated medical treatment and care since last study visit

   

IG/CG

IG/CG

IG/CG

Telemonitoring (App)

      

Continuous monitoring of adherence to inhalation therapy

 

IG/CG

IG/CG

IG/CG

IG/CG

IG/CG

continuously

Weekly lung function measured by home spirometrya

  

IC

IC

IC

IC

at least 1x/week

Patient questionnaire

      

Quality of life: EQ-5D-5L /. EQ-5D-Y-5L

IG/CG

 

IG/CG

IG/CG

IG/CG

IG/CG

Quality of life: CFQ-R

IG/CG

 

IG/CG

IG/CG

IG/CG

IG/CG

Beck Depression Inventar

IG/CG

 

IG/CG

IG/CG

IG/CG

IG/CG

Expectations and their fulfilment regarding the new form of care

IG/ relatives

    

IG/ relatives

Telephone interview

      

acceptance, satisfaction, potential for optimization, barriers and implementation into standard care

     

IG/physician/ relatives

  1. IG = intervention group, CG = control group, t0 = inclusion into study, t1 = start assessment of adherence, t2 = start study intervention, t3 = six months of study intervention, t4 = 12 months of study intervention, t5 = end of study intervention
  2. aLung function is measured at least weekly by home spirometry