rqolpcd

Computes scores for the scales of the QOL-PCD questionnaire's English and German versions for the adult and pediatric (adolescents, parent proxies) target groups.

Disclaimer

This package has been written to the best of my knowledge and belief. Nevertheless, I assume no liability for the correctness of the algorithm and calculated results. Please refer to the relevant publications for details on the calculation of the scores. You may find them below.

Obtaining rqolpcd

Using devtools, install rqolpcd with

library("devtools")

install_github("br-f/rqolpcd")

Input data format

Reads a dataframe containing, but not limited to, columns with the following names.

Note that q1, q2, ..., q40 should be adjacent to each other and arranged in that order left to right.

version ... String, either "Ad" (adult), "Asc" (adolescent), "PPx" (parent proxy)

q1 .... Int, 0 - 3; coded response to question 1, higher value corresponds to higher QOL

q2 .... Int, 0 - 3, coded response to question 2, ...

q3 .... etc. pp.

...

q40 ... Int, 0 - 3, coded response to question 40, ...

Usage

1. Include rqolpcd.

   library("rqolpcd")

2. Read in your data in the format specified above.

   df_qol = read.csv(
       'qolpcd.csv',
       sep=';',
       header=TRUE,
       dec=",",
       na.strings=c(99,88,''),
       encoding='utf-8'
   )
   

3. Compute the scores with

   df_qol <- rqolpcd::impute_and_score(df_qol)

4. Returns the original dataframe, amended by the following columns.

   Scales that are not defined for an age group are scored as NA.

   physical ....... physical score

   emotional ...... emotional score

   social ......... social score

   treatment ...... treatment burden score

   role ........... role score; only applicable to adults and adolescents

   health ......... health perception score; only applicable to adults and parent proxy

   vitality ....... vitality score; only applicable to adults and adolescents

   upper.airways .. symptoms of the upper airways score

   lower.airways .. symptoms of the lower airways score

   hearing ........ hearing score

   eating ......... eating / weight score; only applicabile to parent proxy questionnaires

Handling of missing data

If for a given questionnaire at least half of all items on a scale have been coded as missing, the scale receives NA as score.

Otherwise, missing values are imputed as the mean of all non-missing responses in that questionnaire belonging to that scale.

References

For the original publications see

• Jane S et al. (2015): A quality-of-life measure for adults with primary ciliary dyskinesia: QOL-PCD. Eur Respir J; 46:375-383. DOI 10.1183/09031936.00216214
• Dell S et al. (2016): Primary Ciliary Dyskinesia: First Health-related Quality-of-Life Measures for Pediatric Patients. Ann Am Thorac Soc; 13(10):1726-1735. DOI 10.1513/AnnalsATS.201603-198OC

Validated in

• Behan L et al. (2017): Validation of a health-related quality of life instrument for primary ciliary dyskinesia (QOL-PCD). Thorax; 72:832-839. DOI 10.1136/thoraxjnl-2016-209356
• Behan L et al. (2019): Validation of pediatric health-related quality of life instruments for primary ciliary dyskinesia (QOL-PCD). Pediatr Pulmonol; 54(12):2011-2020. DOI 10.1002/ppul.24507