TY - JOUR
T1 - The patient generated index and decision regret in adolescent idiopathic scoliosis
AU - Lonner, Baron
AU - Castillo, Andrea
AU - Jain, Amit
AU - Sponseller, Paul
AU - Samdani, Amer
AU - Kelly, Michael
AU - Ames, Christopher
AU - Eaker, Lily
AU - Marrache, Majd
AU - Shah, Suken A.
N1 - Funding Information:
This study was supported in part by grants to the Setting Scoliosis Straight Foundation in support of Harms Study Group research from DePuy Synthes Spine, EOS imaging, K2M, Medtronic, NuVasive and Zimmer Biomet. Harms Study Group Investigators: Aaron Buckland, MD; New York University. Amer Samdani, MD; Shriners Hospitals for Children—Philadelphia. Amit Jain, MD; Johns Hopkins Hospital. Baron Lonner, MD; Mount Sinai Hospital. Benjamin Roye, MD; Columbia University. Burt Yaszay, MD; Rady Children’s Hospital. Chris Reilly, MD; BC Children’s Hospital. Daniel Hedequist, MD; Boston Children’s Hospital. Daniel Sucato, MD; Texas Scottish Rite Hospital. David Clements, MD; Cooper Bone & Joint Institute New Jersey. Firoz Miyanji, MD; BC Children’s Hospital. Harry Shufflebarger, MD; Nicklaus Children's Hospital. Jack Flynn, MD; Children’s Hospital of Philadelphia. Jahangir Asghar, MD; Cantor Spine Institute. Jean Marc Mac Thiong, MD; CHU Sainte-Justine. Joshua Pahys, MD; Shriners Hospitals for Children—Philadelphia. Juergen Harms, MD; Klinikum Karlsbad-Langensteinbach, Karlsbad. Keith Bachmann, MD; University of Virginia. Larry Lenke, MD; Columbia University. Mark Abel, MD; University of Virginia. Michael Glotzbecker, MD; Boston Children’s Hospital. Michael Kelly, MD; Washington University. Michael Vitale, MD; Columbia University. Michelle Marks, PT, MA; Setting Scoliosis Straight Foundation. Munish Gupta, MD; Washington University. Nicholas Fletcher, MD; Emory University. Patrick Cahill, MD; Children’s Hospital of Philadelphia. Paul Sponseller, MD; Johns Hopkins Hospital. Peter Gabos, MD: Nemours/Alfred I. duPont Hospital for Children. Peter Newton, MD; Rady Children’s Hospital. Peter Sturm, MD; Cincinnati Children’s Hospital. Randal Betz, MD; Institute for Spine & Scoliosis. Ron Lehman, MD; Columbia University. Stefan Parent, MD: CHU Sainte-Justine. Stephen George, MD; Nicklaus Children's Hospital. Steven Hwang, MD; Shriners Hospitals for Children—Philadelphia. Suken Shah, MD; Nemours/Alfred I. duPont Hospital for Children. Tom Errico, MD; Nicklaus Children's Hospital. Vidyadhar Upasani, MD; Rady Children’s Hospital. This study was also supported in part by grants from Scoliosis Research Society and the American Academy of Orthopaedic Surgeons BOS Quality and Patient Safety Action Fund.
Funding Information:
This study was supported in part by grants to the Setting Scoliosis Straight Foundation in support of Harms Study Group research from DePuy Synthes Spine, EOS imaging, K2M, Medtronic, NuVasive and Zimmer Biomet. Harms Study Group Investigators: Aaron Buckland, MD; New York University. Amer Samdani, MD; Shriners Hospitals for Children—Philadelphia. Amit Jain, MD; Johns Hopkins Hospital. Baron Lonner, MD; Mount Sinai Hospital. Benjamin Roye, MD; Columbia University. Burt Yaszay, MD; Rady Children’s Hospital. Chris Reilly, MD; BC Children’s Hospital. Daniel Hedequist, MD; Boston Children’s Hospital. Daniel Sucato, MD; Texas Scottish Rite Hospital. David Clements, MD; Cooper Bone & Joint Institute New Jersey. Firoz Miyanji, MD; BC Children’s Hospital. Harry Shufflebarger, MD; Nicklaus Children's Hospital. Jack Flynn, MD; Children’s Hospital of Philadelphia. Jahangir Asghar, MD; Cantor Spine Institute. Jean Marc Mac Thiong, MD; CHU Sainte-Justine. Joshua Pahys, MD; Shriners Hospitals for Children—Philadelphia. Juergen Harms, MD; Klinikum Karlsbad-Langensteinbach, Karlsbad. Keith Bachmann, MD; University of Virginia. Larry Lenke, MD; Columbia University. Mark Abel, MD; University of Virginia. Michael Glotzbecker, MD; Boston Children’s Hospital. Michael Kelly, MD; Washington University. Michael Vitale, MD; Columbia University. Michelle Marks, PT, MA; Setting Scoliosis Straight Foundation. Munish Gupta, MD; Washington University. Nicholas Fletcher, MD; Emory University. Patrick Cahill, MD; Children’s Hospital of Philadelphia. Paul Sponseller, MD; Johns Hopkins Hospital. Peter Gabos, MD: Nemours/Alfred I. duPont Hospital for Children. Peter Newton, MD; Rady Children’s Hospital. Peter Sturm, MD; Cincinnati Children’s Hospital. Randal Betz, MD; Institute for Spine & Scoliosis. Ron Lehman, MD; Columbia University. Stefan Parent, MD: CHU Sainte-Justine. Stephen George, MD; Nicklaus Children's Hospital. Steven Hwang, MD; Shriners Hospitals for Children—Philadelphia. Suken Shah, MD; Nemours/Alfred I. duPont Hospital for Children. Tom Errico, MD; Nicklaus Children's Hospital. Vidyadhar Upasani, MD; Rady Children’s Hospital. This study was also supported in part by grants from Scoliosis Research Society and the American Academy of Orthopaedic Surgeons BOS Quality and Patient Safety Action Fund.
Funding Information:
Dr. Ames reports personal fees from UCCF, personal fees from Stryker, personal fees from Biomet Zimmer Spine, personal fees from DePuy Synthes, personal fees from Nuvasive, personal fees from Next Orthosurgical, personal fees from K2M, personal fees from Medicrea, personal fees from DePuy Synthes, personal fees from Medtronic, personal fees from Stryker, personal fees from Medicrea, personal fees from K2M, personal fees from Biomet Zimmmer, personal fees from Titan Spine, personal fees from DePuy Synthes, personal fees from ISSG, personal fees from Operative Neurosurgery, personal fees from SRS, personal fees from ISSG, personal fees from Global Spine Analytics, outside the submitted work. Dr. Kelly reports grants from Depuy Synthes Spine, during the conduct of the study; grants from AO Spine, grants from Scoliosis Research Society, outside the submitted work. Dr. Lonner reports grants from SRS, grants from AAOS, grants from Harms Study Group, during the conduct of the study; personal fees, non-financial support and other from Depuy Synthes, other from Ethicon, personal fees and other from Zimmer Biomet, personal fees and non-financial support from Apifix, personal fees from Unyq Align, other from Paradigm Spine, other from Spine Search, other from Setting Scoliosis Straight Foundation, from K2M, outside the submitted work. Dr. Samdani reports grants from Setting Scoliosis Straight Foundation, during the conduct of the study; personal fees from DePuy Synthes Spine, personal fees from Ethicon, personal fees from Globus Medical, personal fees from NuVasive, personal fees from Stryker, personal fees from Zimmer Biomet, outside the submitted work. Dr. Shah reports grants from Setting Scoliosis Straight Foundation, during the conduct of the study; grants and personal fees from DePuy Synthes Spine, grants and personal fees from K2M, outside the submitted work. Dr. Sponseller reports grants and personal fees from DePuy Spine, personal fees from Globus, personal fees from Orthopediatrics, outside the submitted work.
Publisher Copyright:
© 2020, Scoliosis Research Society.
PY - 2020/12
Y1 - 2020/12
N2 - Hypothesis: AIS patients and their parents will have distinct perspectives regarding the impact of AIS on patients’ lives. Introduction: Current outcome assessment tools for AIS do not fully assess patient-specific disease impact and fail to distinguish between patient and parent perspectives. Patient Generated Index (PGI) has been used in other disease states to assess individual experiences. This study assesses PGI in operative AIS patients and their parents. Design: Level 1, prospective multi-center study. Methods: 44 AIS patient and parent pairs completed the PGI questionnaire comprised of three stages (S1, S2, S3) and decision regret (DR). S1 asks for five areas of the patient’s life most affected by AIS and a 6th encompassing all other areas of their lives affected, S2 focuses on the magnitude of effect, S3 identifies desire to improve affected areas and DR if the surgery did not improve the specific area. S1 free responses were organized into 14 domains. Descriptive statistics were reported for stage scores; free-response format of PGI and DR limited ability for paired sample t test analysis. Results: Mean age at surgery was 14.3 years, 84% female, and mean major curve magnitude was 61°. The three most common patient-reported concerns prior to surgery were (in descending order): sports, general function, and general fitness. However, the three most common parent-reported concerns were (in descending order): general function, sports, and appearance. Patients reported self-esteem and parents reported physical appearance as the most affected domain (S2). Patients reported pain and self-esteem and parents reported sleep and self-esteem as main operative aspirations (S3). Decision regret was the highest for uncertainty of future health in patients and sleep in parents. Conclusion: AIS patients and their parents reported different concerns and DR regarding surgical treatment. PGI provides insight into patient and parent views toward the disease as well as treatment aspirations.
AB - Hypothesis: AIS patients and their parents will have distinct perspectives regarding the impact of AIS on patients’ lives. Introduction: Current outcome assessment tools for AIS do not fully assess patient-specific disease impact and fail to distinguish between patient and parent perspectives. Patient Generated Index (PGI) has been used in other disease states to assess individual experiences. This study assesses PGI in operative AIS patients and their parents. Design: Level 1, prospective multi-center study. Methods: 44 AIS patient and parent pairs completed the PGI questionnaire comprised of three stages (S1, S2, S3) and decision regret (DR). S1 asks for five areas of the patient’s life most affected by AIS and a 6th encompassing all other areas of their lives affected, S2 focuses on the magnitude of effect, S3 identifies desire to improve affected areas and DR if the surgery did not improve the specific area. S1 free responses were organized into 14 domains. Descriptive statistics were reported for stage scores; free-response format of PGI and DR limited ability for paired sample t test analysis. Results: Mean age at surgery was 14.3 years, 84% female, and mean major curve magnitude was 61°. The three most common patient-reported concerns prior to surgery were (in descending order): sports, general function, and general fitness. However, the three most common parent-reported concerns were (in descending order): general function, sports, and appearance. Patients reported self-esteem and parents reported physical appearance as the most affected domain (S2). Patients reported pain and self-esteem and parents reported sleep and self-esteem as main operative aspirations (S3). Decision regret was the highest for uncertainty of future health in patients and sleep in parents. Conclusion: AIS patients and their parents reported different concerns and DR regarding surgical treatment. PGI provides insight into patient and parent views toward the disease as well as treatment aspirations.
KW - Adolescent idiopathic scoliosis
KW - Patient reported outcomes
KW - Shared decision making
KW - Surgical decision making
UR - http://www.scopus.com/inward/record.url?scp=85086867302&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85086867302&partnerID=8YFLogxK
U2 - 10.1007/s43390-020-00155-9
DO - 10.1007/s43390-020-00155-9
M3 - Article
C2 - 32588338
AN - SCOPUS:85086867302
SN - 2212-134X
VL - 8
SP - 1231
EP - 1238
JO - Spine deformity
JF - Spine deformity
IS - 6
ER -