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Patient-reported outcome measures for paediatric acute lower respiratory infection studies

Daniel B. Oakes, Megan J. Baker, Charlie McLeod, Barbara Nattabi, Christopher C. Blyth
European Respiratory Review 2023 32: 220229; DOI: 10.1183/16000617.0229-2022
Daniel B. Oakes
1School of Population and Global Health, The University of Western Australia, Crawley, Australia
2Wesfarmers Centre of Vaccines and Infectious Diseases, Telethon Kids Institute, University of Western Australia, Nedlands, Australia
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  • ORCID record for Daniel B. Oakes
  • For correspondence: daniel.oakes@telethonkids.org.au
Megan J. Baker
2Wesfarmers Centre of Vaccines and Infectious Diseases, Telethon Kids Institute, University of Western Australia, Nedlands, Australia
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Charlie McLeod
2Wesfarmers Centre of Vaccines and Infectious Diseases, Telethon Kids Institute, University of Western Australia, Nedlands, Australia
3Department of Infectious Diseases, Perth Children's Hospital, Nedlands, Australia
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Barbara Nattabi
1School of Population and Global Health, The University of Western Australia, Crawley, Australia
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Christopher C. Blyth
2Wesfarmers Centre of Vaccines and Infectious Diseases, Telethon Kids Institute, University of Western Australia, Nedlands, Australia
3Department of Infectious Diseases, Perth Children's Hospital, Nedlands, Australia
4School of Medicine, University of Western Australia, Perth, Australia
5Department of Microbiology, PathWest Laboratory Medicine, Perth, Australia
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  • FIGURE 1
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    FIGURE 1

    PRISMA-S flow diagram reporting the systematic review results. ALRI: acute lower respiratory infection; PRO: patient-reported outcome.

Tables

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  • TABLE 1

    Characteristics of patient-reported outcome measures identified through systematic review

    Records using the PROMPROM utilisedDescription of the PROM
    tool items and domains
    Target population for the PROM useYear of PROM developmentRecall periodResponse scale description
    Jacobs et al. [7]
    Whitley et al. [11]
    Johnston et al. [12]
    Chen et al. [16]
    Bongard et al. [15]
    Canadian Acute Respiratory Illness and Flu Scale18 items covering the domains of respiratory symptoms, activity limitation and behavioural impactChildren with respiratory infection (validated in under 12s)1997Twice daily for first week, once on days 10 and 14Four-point Likert scale
    Williams et al. [13]
    Lewis et al. [17]
    Gilead Respiratory Syncytial Virus Caregiver Diary26 items covering the domains of respiratory symptoms and behavioural impact<24 months of age with respiratory syncytial virus2018Twice dailyFive/six-point Likert scale
    Bruyndonckx et al. [14]
    Bongard et al. [15]
    EuroQol-Five Dimensions-YouthGeneric health status in terms of five items, including symptoms, activity limitations and behavioural impactIntended for use in 8–15 year oldsNROnce daily each week for 4 weeksThree-level scale, death to full health
    Santanello et al. [18]
    Sarrell et al. [20]
    Bisgaard et al. [21]
    Bronchiolitis Caregiver DiaryThree items of respiratory symptomsInfants aged 2–5 years with recurrent wheeze1999Once dailySix-point Likert scale
    Little et al. [19]Adapted Measure Yourself Medical Outcome ProfileNine items covering the domains of respiratory symptoms and activity limitationNR2001Once dailySix-point Likert scale
    Tran et al. [23]Bronchitis Severity ScaleFive items of respiratory symptomsPatients with respiratory infection1996Once daily rated by a clinician with patient assistanceFive-point Likert scale
    Wat et al. [22]Asthma Symptom DiaryNine items covering the domains of respiratory symptoms and activity limitationPatients aged 9–11 years with asthma1995Twice dailyFour-point Likert scale
    Kruizinga et al. [24]Symptom questionnaireSeven items covering the domains of respiratory symptoms, activity limitation and behavioural impactAdult pneumonia patients aged 21–96 years2004Once dailyDiffering per item; binary responses and three/four/five/six-point Likert scales
    Heinonen et al. [25]
    Matilla et al. [27]
    Symptom diaryFour items covering the domains of respiratory symptoms and activity limitationChildren between 1 and 3 years with influenzaNRTwice daily first week, once daily thereafterFour-point Likert scale
    Barratt et al. [26]Symptom diaryEight items covering the domains of respiratory symptoms and activity limitationCommunity-acquired pneumonia patients older than 6 monthsNROnce dailyFive-point Likert scale

    NR: not reported; PROM: patient-reported outcome measure.

    • TABLE 2

      Information reported on the quality (validity, reliability, and responsiveness) of identified patient-reported outcome measures (PROMs)

      PROMNumber of validation studies reporting properties of measurementMode of administrationQuality
      Content validityConvergent validityDiscriminant validityConcurrent validityPredictive validity
      CARIFS1Parent-reported twice-daily written diary cardItems identified through a literature search. Items discussed by paediatricians and parents, who added additional items and then ranked in terms of importance. Acceptable content validityCorrelated well with both health professional and parental measures (physician's assessment 0.36, nurse's assessments 0.44, Yale observation scale 0.48 and parental global visual analogue assessment 0.52)A significant difference (p=0.007) was found between the children who had no further physician visits, one further visit and two or more visits or hospital attendance. The increase in duration was not statistically significant for the children with ear infections or antibiotics.
      No difference in baseline CARIFS scores according to age, viral aetiology, gender or study site
      Correlates well with the Yale observation scale (0.48) and Parental Global Assessment Scale (0.52)The CARIFS scores improved over the 14 days, consistent with clinical predictions of the course of respiratory infections. The CARIFS decreased from a mean±sd score on day 1 of 28.0±10.3 to 17.1±11.7 on day 3, and 2.5±5.7 on day 14
      GRCD1Caregiver-reported twice-daily written or electronic questionnairesIdentified constructs of interest through literature review, consultation with medical experts and direct input from caregivers. Interviews with adult caregivers informed GRCD item developmentConstruct validity correlations between the GRCD items and the clinician-reported outcomes were generally weaker than expected (r=−0.02–0.34), but correlations with the caregiver-reported PGIS were moderate to strong as hypothesised (r=0.30–0.63) except for those associated with overnight fussiness (r=0.29), overnight sleeping (r=0.14) and overnight stuffy nose (r=0.19)Assessed via known-group ANOVAs and chi-squared tests examined mean differences in GRCD scores between patients classified based on CGIS and PGIS scores. Known-group analyses in support of item-level discriminating ability showed that means were typically higher for patients rated as more ill (84.2% of 57 ANOVAs), but few of these mean differences were statistically significant (14.0% of 57 ANOVAs)Moderate to strong correlations with the caregiver-reported PGIS (r=0.30–0.63)The correlations between item-level change from first day to last day and the PGIC at day 14 were generally moderate to strong
      PROMQuality
      Intra- or inter-rate and test–retest reliabilityInternal consistencyResponsivenessMeasurement errorMinimal important difference
      CARIFSIntra-class correlation coefficient reliability for the mothers on day 2 was a Cronbach's alpha score of 0.808Cronbach's alpha for the 18-item scale at enrolment was 0.89CARIFS decreased from a mean±sd score on day 1 of 28.0±10.3 to 17.1±11.7 on day 3 and 2.5±5.7 on day 14NRNR
      GRCDTest–retest reliability was assessed via kappa coefficients and intraclass correlation coefficients were computed using the subset of patients assumed to be stable from day 13 (“test”) to day 14 (“retest”) because caregivers responded the same on the PGIC on both days. Item-level test–retest reliabilities range in strength from poor (overnight fever kappa =−0.00, daytime activity level kappa=−0.02) to perfect agreement (daytime fever kappa=1.00), with 17 of the 19 items achieving acceptable test–retest reliabilityDemonstrated satisfactory internal consistency of (alphas=0.78–0.94)All GRCD items showed substantial improvement in overnight and daytime symptoms over the course of the 2-week data collection. With respect to responsiveness, item-level effect size estimates of change were large (data not shown), ranging from −0.86 (overnight sleeping) to −3.55 (daytime cough severity); standardised response means were also large (data not shown), ranging from −0.79 (overnight sleeping) to −2.54 (daytime cough severity)NRNR

      CARIFS: Canadian Acute Respiratory Illness and Flu Scale; CGIS: Clinician Global Impression of Severity; GRCD: Gilead Respiratory Syncytial Virus Caregiver Diary; NR: not reported; PGIC: Parent Global Impression of Change; PGIS: Parent Global Impression of Severity.

      Supplementary Materials

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        Supplementary material ERR-0229-2022.supplement

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      Patient-reported outcome measures for paediatric acute lower respiratory infection studies
      Daniel B. Oakes, Megan J. Baker, Charlie McLeod, Barbara Nattabi, Christopher C. Blyth
      European Respiratory Review Mar 2023, 32 (167) 220229; DOI: 10.1183/16000617.0229-2022

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      Patient-reported outcome measures for paediatric acute lower respiratory infection studies
      Daniel B. Oakes, Megan J. Baker, Charlie McLeod, Barbara Nattabi, Christopher C. Blyth
      European Respiratory Review Mar 2023, 32 (167) 220229; DOI: 10.1183/16000617.0229-2022
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