Julie A Panepinto1, Sylvia Torres, James W Varni. 1. Department of Pediatrics, Children's Hospital of Wisconsin of the Children's Research Institute/Medical College of Wisconsin, Hematology/Oncology/Bone Marrow Transplantation, 8701 Watertown Plank Road, Milwaukee, WI 53226, USA. jpanepin@mcw.edu
Abstract
PURPOSE: The objective of this qualitative study was to develop the items and support the content validity of the PedsQL™ Sickle Cell Disease Module for pediatric patients with sickle cell disease (SCD). METHODS: The iterative process included multiphase qualitative methodology. A literature review on SCD was conducted to generate domains of interest for the individual in-depth interviews. Ten healthcare experts with clinical experience in SCD participated in the development of the conceptual framework. A total of 13 pediatric patients with SCD ages 5-18 and 18 parents of patients ages 2-18 participated in the individual in-depth interviews. A total of 33 pediatric patients with SCD ages 5-18 and 39 parents of patients ages 2-18 participated in individually conducted cognitive interviews that included both think aloud and cognitive debriefing techniques to assess the interpretability and readability of the item stems. RESULTS: Six domains were derived from the qualitative methods involving patient/parent interviews and expert opinion, with content saturation achieved, resulting in 48 items. The six domains consisted of items measuring Pain Intensity/Location (9 items), Pain Interference (11 items), Worry (7 items), Emotions (3 items), Disease Symptoms/Treatment, (12 items), and Communication (6 items). CONCLUSIONS: Qualitative methods involving pediatric patients and parents in the item development process support the content validity for the PedsQL™ SCD Module. The PedsQL™ SCD Module is now undergoing national multisite field testing for the psychometric validation phase of instrument development.
PURPOSE: The objective of this qualitative study was to develop the items and support the content validity of the PedsQL™ Sickle Cell Disease Module for pediatric patients with sickle cell disease (SCD). METHODS: The iterative process included multiphase qualitative methodology. A literature review on SCD was conducted to generate domains of interest for the individual in-depth interviews. Ten healthcare experts with clinical experience in SCD participated in the development of the conceptual framework. A total of 13 pediatric patients with SCD ages 5-18 and 18 parents of patients ages 2-18 participated in the individual in-depth interviews. A total of 33 pediatric patients with SCD ages 5-18 and 39 parents of patients ages 2-18 participated in individually conducted cognitive interviews that included both think aloud and cognitive debriefing techniques to assess the interpretability and readability of the item stems. RESULTS: Six domains were derived from the qualitative methods involving patient/parent interviews and expert opinion, with content saturation achieved, resulting in 48 items. The six domains consisted of items measuring Pain Intensity/Location (9 items), Pain Interference (11 items), Worry (7 items), Emotions (3 items), Disease Symptoms/Treatment, (12 items), and Communication (6 items). CONCLUSIONS: Qualitative methods involving pediatric patients and parents in the item development process support the content validity for the PedsQL™ SCD Module. The PedsQL™ SCD Module is now undergoing national multisite field testing for the psychometric validation phase of instrument development.
Authors: James W Varni; Brian D Stucky; David Thissen; Esi Morgan Dewitt; Debra E Irwin; Jin-Shei Lai; Karin Yeatts; Darren A Dewalt Journal: J Pain Date: 2010-06-02 Impact factor: 5.820
Authors: O S Platt; B D Thorington; D J Brambilla; P F Milner; W F Rosse; E Vichinsky; T R Kinney Journal: N Engl J Med Date: 1991-07-04 Impact factor: 91.245
Authors: James W Varni; Tasha M Burwinkle; Jenifer R Jacobs; Michael Gottschalk; Francine Kaufman; Kenneth L Jones Journal: Diabetes Care Date: 2003-03 Impact factor: 19.112
Authors: Kathryn Eilene Lasch; Patrick Marquis; Marc Vigneux; Linda Abetz; Benoit Arnould; Martha Bayliss; Bruce Crawford; Kathleen Rosa Journal: Qual Life Res Date: 2010-05-30 Impact factor: 4.147
Authors: O S Platt; D J Brambilla; W F Rosse; P F Milner; O Castro; M H Steinberg; P P Klug Journal: N Engl J Med Date: 1994-06-09 Impact factor: 91.245
Authors: S Charache; M L Terrin; R D Moore; G J Dover; F B Barton; S V Eckert; R P McMahon; D R Bonds Journal: N Engl J Med Date: 1995-05-18 Impact factor: 91.245
Authors: Julie A Panepinto; Kerry M O'Mahar; Michael R DeBaun; Kimberly M Rennie; J Paul Scott Journal: J Pediatr Hematol Oncol Date: 2004-09 Impact factor: 1.289
Authors: James R Eckman; Kathryn L Hassell; Wayne Huggins; Ellen M Werner; Elizabeth S Klings; Robert J Adams; Julie A Panepinto; Carol M Hamilton Journal: Blood Adv Date: 2017-12-15
Authors: Ann T Farrell; Julie Panepinto; C Patrick Carroll; Deepika S Darbari; Ankit A Desai; Allison A King; Robert J Adams; Tabitha D Barber; Amanda M Brandow; Michael R DeBaun; Manus J Donahue; Kalpna Gupta; Jane S Hankins; Michelle Kameka; Fenella J Kirkham; Harvey Luksenburg; Shirley Miller; Patricia Ann Oneal; David C Rees; Rosanna Setse; Vivien A Sheehan; John Strouse; Cheryl L Stucky; Ellen M Werner; John C Wood; William T Zempsky Journal: Blood Adv Date: 2019-12-10
Authors: Julie A Panepinto; Sylvia Torres; Cristiane B Bendo; Timothy L McCavit; Bogdan Dinu; Sandra Sherman-Bien; Christy Bemrich-Stolz; James W Varni Journal: Pediatr Blood Cancer Date: 2013-02-25 Impact factor: 3.167
Authors: Lori E Crosby; Anna Hood; Katherine Kidwell; Cara Nwankwo; James Peugh; Heather Strong; Charles Quinn; Maria T Britto Journal: Pediatr Blood Cancer Date: 2020-07-22 Impact factor: 3.167