Development and preliminary validation of the challenges of living with cystic fibrosis (CLCF) questionnaire: a 46-item measure of treatment burden for parent/carers of children with CF

References

• Abidin, R. R. (1995). Parenting stress index (3rd ed.). Psychological Assessment Resources.
   Google Scholar
• Barben, J., Castellani, C., Dankert-Roelse, J., Gartner, S., Kashirskaya, N., Linnane, B., Mayell, S., Munck, A., Sands, D., Sommerburg, O., Pybus, S., Winters, V., & Southern, K. W. (2017). The expansion and performance of national newborn screening programmes for cystic fibrosis in Europe. Journal of Cystic Fibrosis: Official Journal of the European Cystic Fibrosis Society, 16(2), 207–213.
   PubMed Web of Science ®Google Scholar
• Boling, W., Macrina, D. M., & Clancy, J. P. (2003). The Caregiver Quality of Life Cystic Fibrosis (CQOLCF) scale: modification and validation of an instrument to measure quality of life in cystic fibrosis family caregivers. Quality of Life Research. An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 12(8), 1119–1126.
   PubMed Web of Science ®Google Scholar
• Bonner, M. J., Hardy, K. K., Guill, A. B., McLaughlin, C., Schweitzer, H., & Carter, K. (2006). Development and validation of the parent experience of child illness. Journal of Pediatric Psychology, 31(3), 310–321. https://doi.org/10.1093/jpepsy/jsj034
   PubMed Web of Science ®Google Scholar
• Brannan, A. M., Heflinger, C. A., & Bickman, L. (1997). The caregiver strain questionnaire. Journal of Emotional and Behavioral Disorders, 5(4), 212–222. https://doi.org/10.1177/106342669700500404
   Web of Science ®Google Scholar
• Brodlie, M., Haq, I. J., Roberts, K., & Elborn, J. S. (2015). Targeted therapies to improve CFTR function in cystic fibrosis. Genome Medicine, 7, 101. https://doi.org/10.1186/s13073-015-0223-6
   PubMed Web of Science ®Google Scholar
• Brown, R. T., Wiener, L., Kupst, M. J., Brennan, T., Behrman, R., Compas, B. E., David Elkin, T., Fairclough, D. L., Friebert, S., Katz, E., Kazak, A. E., Madan-Swain, A., Mansfield, N., Mullins, L. L., Noll, R., Patenaude, A. F., Phipps, S., Sahler, O. J., Sourkes, B., & Zeltzer, L. (2007). Single parents of children with chronic illness: An understudied phenomenon. Journal of Pediatric Psychology, 33(4), 408–421. https://doi.org/10.1093/jpepsy/jsm079
   PubMed Web of Science ®Google Scholar
• Butcher, J. L., & Nasr, S. Z. (2015). Direct observation of respiratory treatments in cystic fibrosis: Parent-child interactions relate to medical regimen adherence. Journal of Pediatric Psychology, 40(1), 8–17.
   PubMed Web of Science ®Google Scholar
• Costello, A. B., & Osborne, J. (2005). Best practices in exploratory factor analysis: Four recommendations for getting the most from your analysis. Practical Assessment, Research and Evaluation, 10, 7.
   Google Scholar
• DeMaio, T. J., & Rothgeb, J. M. (1996). Cognitive Interviewing Techniques: In the Lab and in the Field. In N. Schwartz & S. Sudman (Eds.), Answering questions: Methodology for determining cognitive and communicative processes in survey research. Jossey-Bass.
   Google Scholar
• DeVellis, R. F. (2017). Scale development: Theory and applications (4th ed.). Sage Pub., Inc.
   Google Scholar
• Elborn, S. J. (2016). Cystic fibrosis. Lancet (London, England), 388(10059), 2519–2531. https://doi.org/10.1016/S0140-6736(16)00576-6
   PubMed Web of Science ®Google Scholar
• Ernst, M. M., Johnson, M. C., & Stark, L. J. (2011). Developmental and psychosocial issues in cystic fibrosis. Pediatric Clinics of North America, 58 (4), 865–885. https://doi.org/10.1016/j.pcl.2011.06.004
   PubMed Web of Science ®Google Scholar
• Farrel, P. M. (2008). The prevealence of cystic fibrosis in the European Union. Journal of Cystic Fibrosis, 7, 450–453.
   PubMed Web of Science ®Google Scholar
• FDA. (2009). Patient-reported outcome measures: Use in medical product development to support labelling claims. US Department of Health and Human Services, Food and Drug Administration.
   Google Scholar
• Foster, C., Eiser, C., Oades, P., Sheldon, C., Tripp, J., Goldman, P., Rice, S., & Trott, J. (2001). Treatment demands and differential treatment of patients with cystic fibrosis and their siblings: Patient, parent and sibling accounts. Child: Care, Health and Development, 27(4), 349–364. https://doi.org/10.1046/j.1365-2214.2001.00196.x
   PubMed Web of Science ®Google Scholar
• Geddes, D. (2004). Closing plenary. European CF Conference.
   Google Scholar
• Genat, B. (2009). Building emergent situated knowledges in participatory action research. Action Research, 7(1), 101–115. https://doi.org/10.1177/1476750308099600
   Web of Science ®Google Scholar
• Glasscoe, C., Lancaster, G. A., Smyth, R. L., & Hill, J. (2007). Parental depression following the early diagnosis of cystic fibrosis: a matched, prospective study. The Journal of Pediatrics, 150(2), 185–191. https://doi.org/10.1016/j.jpeds.2006.11.022
   PubMed Web of Science ®Google Scholar
• Glasscoe, C., & Smith, J. A. (2011). Unravelling complexities involved in parenting a child with cystic fibrosis: an interpretative phenomenological analysis. Clinical Child Psychology and Psychiatry, 16(2), 279–298. https://doi.org/10.1177/1359104510383207
   PubMedGoogle Scholar
• Goss, C. H., & Quittner, A. L. (2007). Patient reported outcomes in cystic fibrosis. Proceedings of the American Thoracic Society 4, 378–386.
   Google Scholar
• Jones, A. M., Dodd, M. E., Doherty, C. J., Govan, J. R. W., & Webb, A. K. (2002). Increased treatment requirements of patients with cystic fibrosis who harbour a highly transmissible strain of Pseudomonas aeruginosa. Thorax, 57(11), 924–925. https://doi.org/10.1136/thorax.57.11.924
   PubMed Web of Science ®Google Scholar
• Kreuger, R. A., & Casey, M. A. (2000). Focus groups: A practical guide for applied research (Vol. 3rd). Sage.
   Google Scholar
• Lee, T. W. R., Brownlee, K. G., Conway, S. P., Denton, M., & Littlewood, J. M. (2003). Evaluation of a new definition for chronic Pseudomonas aeruginosa infection in cystic fibrosis patients. Journal of Cystic Fibrosis, 2(1), 29–34. https://doi.org/10.1016/S1569-1993(02)00141-8
   PubMedGoogle Scholar
• McCray, G., Hope, H., Glasscoe, C., Hill, J., Quittner, A., Southern, K., & Lancaster, G. A. (for review with Psychology & Health). Creation and validation of a robust short form psychometric tool to assess the Challenge of Living with a child with Cystic Fibrosis (CLCF-SF).
   Google Scholar
• Modi, A. C., & Quittner, A. L. (2006). Barriers to treatment adherence for children with cystic fibrosis and asthma: What gets in the way? Journal of Pediatric Psychology, 31(8), 846–858.
   PubMed Web of Science ®Google Scholar
• Murdoch, D. D., Rahman, A., Barsky, V., Maunula, S., & Cawthorpe, D. (2014). The use of the Burden Assessment Scale with families of a pediatric population. Community Mental Health Journal, 50(6), 703–710.
   PubMed Web of Science ®Google Scholar
• Muther, E. F., Polineni, D., & Sawicki, G. S. (2018). Overcoming psychosocial challenges in cystic fibrosis: Promoting resilience. Pediatric Pulmonology, 53(S3), S86–S92. https://doi.org/10.1002/ppul.24127
   PubMed Web of Science ®Google Scholar
• Oermann, C. M., Retsch, G. Z., Quittner, A. L., Gibson, R. L., McCoy, K. S., Montgomery, A. B., & Cooper, P. J. (2010). An 18-month study of the safety and efficacy of repeated courses of inhaled aztreonam lysine in cystic fibrosis. Pediatric Pulmonology, 45(11), 1121–1134.
   PubMed Web of Science ®Google Scholar
• Quittner, A. L., Espelage, D. L., Opipari, L. C., Carter, B., Eid, N., & Eigen, H. (1998). Role strain in couples with and without a child with a chronic illness: Associations with marital satisfaction, intimacy, and daily mood. Health Psychology: Official Journal of the Division of Health Psychology, American Psychological Association, 17(2), 112–124.
   PubMed Web of Science ®Google Scholar
• Quittner, A. L., Goldbeck, L., Abbott, J., Duff, A., Lambrecht, P., Solé, A., Tibosch, M. M., Bergsten Brucefors, A., Yüksel, H., Catastini, P., Blackwell, L., & Barker, D. (2014). Prevalence of depression and anxiety in patients with cystic fibrosis and parent caregivers: Results of the International Depression Epidemiological Study across nine countries. Thorax, 69(12), 1090–1097. https://doi.org/10.1136/thoraxjnl-2014-205983
   PubMed Web of Science ®Google Scholar
• Quittner, A. L., Sawicki, G. S., McMullen, A., Rasouliyan, L., Pasta, D. J., Yegin, A., & Konstan, M. W. (2012). Psychometric evaluation of the Cystic Fibrosis Questionnaire-Revised in a national sample. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 21(7), 1267–1278. https://doi.org/10.1007/s11136-011-0036-z
   PubMed Web of Science ®Google Scholar
• Raina, P., O’Donnell, M., Schwellnus, H., Rosenbaum, P., King, G., Brehaut, J., Russell, D., Swinton, M., King, S., Wong, M., Walter, S. D., & Wood, E. (2004). Caregiving process and caregiver burden: Conceptual models to guide research and practice. BMC Pediatrics, 4, 1. https://doi.org/10.1186/1471-2431-4-1
   PubMedGoogle Scholar
• Rosenfeld, M., Emerson, J., Williams-Warren, J., Pepe, M., Smith, A., Montgomery, A. B., & Ramsey, B. (2001). Defining a pulmonary exacerbation in cystic fibrosis. The Journal of Pediatrics, 139(3), 359–365. https://doi.org/10.1067/mpd.2001.117288
   PubMed Web of Science ®Google Scholar
• Rowbotham, N. J., Smith, S., Leighton, P. A., Rayner, O. C., Gathercole, K., Elliott, Z. C., Nash, E. F., Daniels, T., Duff, A. J. A., Collins, S., Chandran, S., Peaple, U., Hurley, M. N., Brownlee, K., & Smyth, A. R. (2018). The top 10 research priorities in Cystic Fibrosis developed by a partnership between people with CF and healthcare providers. Thorax, 73(4), 388–390. https://doi.org/10.1136/thoraxjnl-2017-210473
   PubMed Web of Science ®Google Scholar
• Sawicki, C. S., Ren, C. L., Konstan, M. W., Millar, S. J., Pasta, D. J., & Quittner, A. L, for the Investigators and Coordinators of the Epidemiologic Study of Cystic Fibrosis. (2013). Treatment complexity in CF: Trends over time and associations with site-specific outcomes. Journal of Cystic Fibrosis, 12(5), 461–467. https://doi.org/10.1016/j.jcf.2012.12.009
   PubMed Web of Science ®Google Scholar
• Shakkottai, A., Kidwell, K. M., Townsend, M., & Nasr, S. Z. (2015). A five-year retrospective analysis of adherence in cystic fibrosis. Pediatric Pulmonology, 50(12), 1224–1229. https://doi.org/10.1002/ppul.23307
   PubMed Web of Science ®Google Scholar
• Slatter, A., Francis, S. A., Smith, F., & Bush, A. (2004). Supporting parents in managing drugs for children with cystic fibrosis. British Journal of Nursing (Mark Allen Publishing), 13(19), 1135–1139.
   PubMedGoogle Scholar
• Smith, B. A., Modi, A. C., Quittner, A. L., & Wood, B. L. (2010). Depressive symptoms in children with cystic fibrosis and parents and its effects on adherence to airway clearance. Pediatric Pulmonology, 45(8), 756–763. https://doi.org/10.1002/ppul.21238
   PubMed Web of Science ®Google Scholar
• Smyth, A. R., Bell, S. C., Bojcin, S., Bryon, M., Duff, A., Flume, P., Kashirskaya, N., Munck, A., Ratjen, F., Schwarzenberg, S. J., Sermet-Gaudelus, I., Southern, K. W., Taccetti, G., Ullrich, G., & Wolfe, S., European Cystic Fibrosis Society. (2014). European cystic fibrosis society standards of care: Best practice guidelines. Journal of Cystic Fibrosis: Official Journal of the European Cystic Fibrosis Society, 13 Suppl 1, S23–S42. https://doi.org/10.1016/j.jcf.2014.03.010
   PubMed Web of Science ®Google Scholar
• Snape, D. S. L. (2003). The foundations of qualitative research. In J. Ritchie, & J. Lewis (Ed.), Qualitative research practice. A guide for social science students and researchers (pp. 2–10). Sage.
   Google Scholar
• Stone, A. A., Turkan, J. S., Bachrach, C. A., Jobe, J. B., Kurtzman, H. S., & Cain, V. S. (2000). Science of self-report: Implications for research & practice. Lawrence Erlbaum Assoc.
   Google Scholar
• Tsui, L.-C. (1990). Population analysis of the major mutation in cystic fibrosis (Editorial). Human Genetics, 85(4), 391–392. https://doi.org/10.1007/BF02428268
   PubMed Web of Science ®Google Scholar
• Walker, L. S., Ford, M., & Donald, W. D. (1987). Cystic fibrosis and family stress: Effects of age and severity of illness. Pediatrics, 79(2), 239–246.
   PubMed Web of Science ®Google Scholar
• Wang, X., Dockery, D. W., Wypij, D., Fay, M. E., & Ferris, B. G. (1993). Pulmonary function between 6 and 18 years of age. Pediatric Pulmonology, 15(2), 75–88. https://doi.org/10.1002/ppul.1950150204
   PubMed Web of Science ®Google Scholar
• Ziaian, T., Sawyer, M. G., Reynolds, K. E., Carbone, J. A., Clark, J. J., Baghurst, P. A., Couper, J. J., Kennedy, G., Martin, A. J., Staugas, R. G., & French, D. J. (2006). Treatment burden and health-related quality of life of children with diabetes, cystic fibrosis and asthma. Journal of Paediatrics and Child Health, 42(10), 596–600. https://doi.org/10.1111/j.1440-1754.2006.00943.x
   PubMed Web of Science ®Google Scholar