OBJECTIVE: Our study had 3 aims: (1) to evaluate the functioning of the Symptom Burden Index (SBI) in patients with systemic sclerosis (SSc); (2) to determine the amount of burden per problem experienced by patients as well as the number of patients experiencing each measured problem area, and the number of SSc problems per patient; and (3) to characterize the burden profiles of problem area-specific subgroups of patients. METHODS: We developed the SBI to determine the effect of problems in 8 major symptomatic areas of importance to patients (skin, hand mobility, calcinosis, shortness of breath, eating, bowel, sleep, and pain). RESULTS: Sixty-two patients with SSc completed questionnaires on current disease-related problems, physical functioning, and health status. On average, patients were 53.4 years old and had had SSc for 8 years. Patients were mainly women (87%), English-speaking (87%), with diffuse SSc (63%), white (69%), married (61%), and lived with 1 or more additional household members (84%). Only 26% were employed full-time. The 3 most widely reported problem areas were pain, hand, and skin, experienced by 92%, 89%, and 88%, respectively. About one-third reported experiencing 0-5 problems and one-third 7-8 problems; individual patients experienced, on average, 5.7 problems. CONCLUSION: Psychometric evaluation determined that (1) summarizing SBI problem area item sets to report burden scores per problem measured is justified; (2) the 8 proposed problem areas are independent and deserve separate evaluation; and (3) burden scores correlate as expected with the Health Assessment Questionnaire-Disability Index and the Medical Outcomes Study Short-Form 36 questionnaire. The number of problems experienced and the degree of problem-associated burden that patients with SSc bear are substantial. Use of the SBI's patient-focused measurements may aid physicians in resolving problems most directly affecting patients' quality of life. This approach to measuring symptomatic burden in patients with chronic disease could be extended to other conditions.
OBJECTIVE: Our study had 3 aims: (1) to evaluate the functioning of the Symptom Burden Index (SBI) in patients with systemic sclerosis (SSc); (2) to determine the amount of burden per problem experienced by patients as well as the number of patients experiencing each measured problem area, and the number of SSc problems per patient; and (3) to characterize the burden profiles of problem area-specific subgroups of patients. METHODS: We developed the SBI to determine the effect of problems in 8 major symptomatic areas of importance to patients (skin, hand mobility, calcinosis, shortness of breath, eating, bowel, sleep, and pain). RESULTS: Sixty-two patients with SSc completed questionnaires on current disease-related problems, physical functioning, and health status. On average, patients were 53.4 years old and had had SSc for 8 years. Patients were mainly women (87%), English-speaking (87%), with diffuse SSc (63%), white (69%), married (61%), and lived with 1 or more additional household members (84%). Only 26% were employed full-time. The 3 most widely reported problem areas were pain, hand, and skin, experienced by 92%, 89%, and 88%, respectively. About one-third reported experiencing 0-5 problems and one-third 7-8 problems; individual patients experienced, on average, 5.7 problems. CONCLUSION: Psychometric evaluation determined that (1) summarizing SBI problem area item sets to report burden scores per problem measured is justified; (2) the 8 proposed problem areas are independent and deserve separate evaluation; and (3) burden scores correlate as expected with the Health Assessment Questionnaire-Disability Index and the Medical Outcomes Study Short-Form 36 questionnaire. The number of problems experienced and the degree of problem-associated burden that patients with SSc bear are substantial. Use of the SBI's patient-focused measurements may aid physicians in resolving problems most directly affecting patients' quality of life. This approach to measuring symptomatic burden in patients with chronic disease could be extended to other conditions.
Authors: D Khanna; D J Lovell; E Giannini; P J Clements; P A Merkel; J R Seibold; M Matucci-Cerinic; C P Denton; M D Mayes; V D Steen; J Varga; D E Furst Journal: Ann Rheum Dis Date: 2007-09-24 Impact factor: 19.103
Authors: Dinesh Khanna; Daniel E Furst; Philip J Clements; Grace S Park; Ron D Hays; Jeonglim Yoon; Joseph H Korn; Peter A Merkel; Naomi Rothfield; Fredrick M Wigley; Larry W Moreland; Richard Silver; Virginia D Steen; Michael Weisman; Maureen D Mayes; David H Collier; Thomas A Medsger; James R Seibold Journal: J Rheumatol Date: 2005-05 Impact factor: 4.666
Authors: Peter A Merkel; Philip J Clements; John D Reveille; Maria E Suarez-Almazor; Gabriele Valentini; Daniel E Furst Journal: J Rheumatol Date: 2003-07 Impact factor: 4.666
Authors: Brett D Thombs; Lisa R Jewett; Shervin Assassi; Murray Baron; Susan J Bartlett; Angela Costa Maia; Ghassan El-Baalbaki; Daniel E Furst; Karen Gottesman; Jennifer A Haythornthwaite; Marie Hudson; Ann Impens; Annett Korner; Catarina Leite; Maureen D Mayes; Vanessa L Malcarne; Sarosh J Motivala; Luc Mouthon; Warren R Nielson; Diane Plante; Serge Poiraudeau; Janet L Poole; Janet Pope; Maureen Sauve; Russell J Steele; Maria E Suarez-Almazor; Suzanne Taillefer; Cornelia H van den Ende; Erin Arthurs; Marielle Bassel; Vanessa Delisle; Katherine Milette; Allison Leavens; Ilya Razykov; Dinesh Khanna Journal: Clin Exp Rheumatol Date: 2012-05-29 Impact factor: 4.473
Authors: John D Pauling; Joana Caetano; Corrado Campochiaro; Giacomo De Luca; Ana Maria Gheorghiu; Maria Grazia Lazzaroni; Dinesh Khanna Journal: J Scleroderma Relat Disord Date: 2019-11-25
Authors: Marie-Eve Carrier; Linda Kwakkenbos; Isabelle Boutron; Joep Welling; Maureen Sauve; Cornelia van den Ende; Anne A Schouffoer; Marie Hudson; Brett D Thombs; Luc Mouthon Journal: J Scleroderma Relat Disord Date: 2017-10-16
Authors: Sofia de Achaval; Michael A Kallen; Maureen D Mayes; Maria A Lopez-Olivo; Maria E Suarez-Almazor Journal: J Rheumatol Date: 2013-06-15 Impact factor: 4.666
Authors: Alexandra B Wiese; Veronica J Berrocal; Daniel E Furst; James R Seibold; Peter A Merkel; Maureen D Mayes; Dinesh Khanna Journal: Arthritis Care Res (Hoboken) Date: 2014-11 Impact factor: 4.794
Authors: Dinesh Khanna; Yannick Allanore; Christopher P Denton; Marco Matucci-Cerinic; Janet Pope; Barbara Hinzmann; Siobhan Davies; Janethe de Oliveira Pena; Oliver Distler Journal: J Scleroderma Relat Disord Date: 2019-08-21
Authors: Linda Kwakkenbos; Marie-Eve Carrier; Joep Welling; Kimberly A Turner; Julie Cumin; Mia Pépin; Cornelia van den Ende; Anne A Schouffoer; Marie Hudson; Ward van Breda; Maureen Sauve; Maureen D Mayes; Vanessa L Malcarne; Warren R Nielson; Christelle Nguyen; Isabelle Boutron; François Rannou; Brett D Thombs; Luc Mouthon Journal: PeerJ Date: 2022-08-04 Impact factor: 3.061