TY - JOUR
T1 - Learning the full impact of migraine through patient voices
T2 - A qualitative study
AU - Estave, Paige M.
AU - Beeghly, Summerlyn
AU - Anderson, Reid
AU - Margol, Caitlyn
AU - Shakir, Mariam
AU - George, Geena
AU - Berger, Anissa
AU - O’Connell, Nathaniel
AU - Burch, Rebecca
AU - Haas, Niina
AU - Powers, Scott W.
AU - Seng, Elizabeth
AU - Buse, Dawn C.
AU - Lipton, Richard B.
AU - Wells, Rebecca Erwin
N1 - Funding Information:
We are grateful for all the participants who volunteered for this study. We are thankful for the tremendous support of Charles R. Pierce, Kate Furgurson, the Wake Forest Baptist Health Q‐Pro, Timothy T. Houle, PhD, Elizabeth Loder, MD, MPH, Donald B. Penzien, PhD, and Fadel Zeidan, PhD. We appreciate the support from the Wake Forest Clinical Translational Science Institute (CTSI), the Clinical Research Unit staff and support, and the Research Coordinator Pool, funded by the National Center for Advancing Translational Sciences (NCATS), National Institutes of Health, through Grant Award Number UL1TR001420, and Harvard Catalyst research assistant Peter Douglass. We appreciate the help of the research coordinators, including Imani Randolph, Elizabeth Crenshaw, Emily Ansusinha, Georgeta Lester, Carolyn Hedrick, Sandra Norona, Nancy Lawlor, and Brittany Briceno. This study would not have been completed without the tremendous support of a multitude of students, including Nicole Rojas, Hudaisa Fatima, Jason Collier, Grace Posey, Obiageli Nwamu, Vinish Kumar, Rosalia Arnolda, Paige Brabant, Danika Berman, Nicholas Contillo, Flora Chang, Easton Howard, Camden Nelson, and Carson DeLong.
Funding Information:
This research was funded by the American Pain Society Grant, Sharon S. Keller Chronic Pain Research Program, (PI‐Wells); NCCIH K23AT008406 (PI‐Wells) and NINDS K23NS096107 (PI‐Seng), American Headache Society Fellowship (PIs: Wells and Burch) and the Headache Research Fund of the John R. Graham Headache Center, Brigham and Women's Faulkner Hospital. This research was supported in part by the Qualitative and Patient‐Reported Outcomes Developing Shared Resource of the Wake Forest Baptist Comprehensive Cancer Center's NCI Cancer Center Support Grant P30CA012197 and the Wake Forest Clinical and Translational Science Institute's NCATS Grant UL1TR001420. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health
Funding Information:
PE, SB, RA, CM, MS, GG, AB, NO, SWP, and REW have no conflicts of interest to report. RB receives an editorial stipend for serving as an Associate Editor for . NH is an employee and receives salary support from BrightOutcome, Inc. ES has consulted for GlaxoSmithKline and Click Therapeutics. DCB is a part‐time employee of Vector Psychometric Group, LLC and has received grant support and honoraria from the Food and Drug Administration and the National Headache Foundation and grant support and honoraria from Allergan, Amgen, Biohaven, Lilly, Novartis, and Promius/Dr. Reddys. She serves on the editorial board of . RBL has received grant support from the National Institutes of Health, the Food and Drug Administration, the National Headache Foundation, and the Migraine Research Fund. He serves as a consultant, serves as an advisory board member, has received honoraria from or conducted studies funded by Alder, Abbvie/Allergan, American Headache Society, Biohaven, Eli Lilly, Lundbeck, Merck, Novartis, Pfizer, and Teva, Inc. He receives royalties from , 8th Edition (Oxford University Press, 2009). He holds stock or options in Biohaven and Cntrl M. Neurology Current Pain and Headache Reports Wolff's Headache
Funding Information:
This research was funded by the American Pain Society Grant, Sharon S. Keller Chronic Pain Research Program, (PI-Wells); NCCIH K23AT008406 (PI-Wells) and NINDS K23NS096107 (PI-Seng), American Headache Society Fellowship (PIs: Wells and Burch) and the Headache Research Fund of the John R. Graham Headache Center, Brigham and Women's Faulkner Hospital. This research was supported in part by the Qualitative and Patient-Reported Outcomes Developing Shared Resource of the Wake Forest Baptist Comprehensive Cancer Center's NCI Cancer Center Support Grant P30CA012197 and the Wake Forest Clinical and Translational Science Institute's NCATS Grant UL1TR001420. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health We are grateful for all the participants who volunteered for this study. We are thankful for the tremendous support of Charles R. Pierce, Kate Furgurson, the Wake Forest Baptist Health Q-Pro, Timothy T. Houle, PhD, Elizabeth Loder, MD, MPH, Donald B. Penzien, PhD, and Fadel Zeidan, PhD. We appreciate the support from the Wake Forest Clinical Translational Science Institute (CTSI), the Clinical Research Unit staff and support, and the Research Coordinator Pool, funded by the National Center for Advancing Translational Sciences (NCATS), National Institutes of Health, through Grant Award Number UL1TR001420, and Harvard Catalyst research assistant Peter Douglass. We appreciate the help of the research coordinators, including Imani Randolph, Elizabeth Crenshaw, Emily Ansusinha, Georgeta Lester, Carolyn Hedrick, Sandra Norona, Nancy Lawlor, and Brittany Briceno. This study would not have been completed without the tremendous support of a multitude of students, including Nicole Rojas, Hudaisa Fatima, Jason Collier, Grace Posey, Obiageli Nwamu, Vinish Kumar, Rosalia Arnolda, Paige Brabant, Danika Berman, Nicholas Contillo, Flora Chang, Easton Howard, Camden Nelson, and Carson DeLong.
Publisher Copyright:
© 2021 American Headache Society
PY - 2021/7/1
Y1 - 2021/7/1
N2 - Objective: To better characterize the ways that migraine affects multiple domains of life. Background: Further understanding of migraine burden is needed. Methods: Adults with migraine randomized to mindfulness-based stress reduction or headache education arms (n = 81) in two separate randomized clinical trials participated in semistructured in-person qualitative interviews conducted after the interventions. Interviews queried participants on migraine impact on life and were audio-recorded, transcribed, and summarized into a framework matrix. A master codebook was created until meaning saturation was reached and magnitude coding established code frequency. Themes and subthemes were identified using a constructivist grounded theory approach. Results: Despite most participants being treated with acute and/or prophylactic medications, 90% (73/81) reported migraine had a negative impact on overall life, with 68% (55/81) endorsing specific domains of life impacted and 52% (42/81) describing impact on emotional health. Six main themes of migraine impact emerged: (1) global negative impact on overall life; (2) impact on emotional health; (3) impact on cognitive function; (4) impact on specific domains of life (work/career, family, social); (5) fear and avoidance (pain catastrophizing and anticipatory anxiety); and (6) internalized and externalized stigma. Participants reported how migraine (a) controls life, (b) makes life difficult, and (c) causes disability during attacks, with participants (d) experiencing a lack of control and/or (e) attempting to push through despite migraine. Emotional health was affected through (a) isolation, (b) anxiety, (c) frustration/anger, (d) guilt, (e) mood changes/irritability, and (f) depression/hopelessness. Cognitive function was affected through concentration and communication difficulties. Conclusions: Migraine has a global negative impact on overall life, cognitive and emotional health, work, family, and social life. Migraine contributes to isolation, frustration, guilt, fear, avoidance behavior, and stigma. A greater understanding of the deep burden of this chronic neurological disease is needed to effectively target and treat what is most important to those living with migraine.
AB - Objective: To better characterize the ways that migraine affects multiple domains of life. Background: Further understanding of migraine burden is needed. Methods: Adults with migraine randomized to mindfulness-based stress reduction or headache education arms (n = 81) in two separate randomized clinical trials participated in semistructured in-person qualitative interviews conducted after the interventions. Interviews queried participants on migraine impact on life and were audio-recorded, transcribed, and summarized into a framework matrix. A master codebook was created until meaning saturation was reached and magnitude coding established code frequency. Themes and subthemes were identified using a constructivist grounded theory approach. Results: Despite most participants being treated with acute and/or prophylactic medications, 90% (73/81) reported migraine had a negative impact on overall life, with 68% (55/81) endorsing specific domains of life impacted and 52% (42/81) describing impact on emotional health. Six main themes of migraine impact emerged: (1) global negative impact on overall life; (2) impact on emotional health; (3) impact on cognitive function; (4) impact on specific domains of life (work/career, family, social); (5) fear and avoidance (pain catastrophizing and anticipatory anxiety); and (6) internalized and externalized stigma. Participants reported how migraine (a) controls life, (b) makes life difficult, and (c) causes disability during attacks, with participants (d) experiencing a lack of control and/or (e) attempting to push through despite migraine. Emotional health was affected through (a) isolation, (b) anxiety, (c) frustration/anger, (d) guilt, (e) mood changes/irritability, and (f) depression/hopelessness. Cognitive function was affected through concentration and communication difficulties. Conclusions: Migraine has a global negative impact on overall life, cognitive and emotional health, work, family, and social life. Migraine contributes to isolation, frustration, guilt, fear, avoidance behavior, and stigma. A greater understanding of the deep burden of this chronic neurological disease is needed to effectively target and treat what is most important to those living with migraine.
KW - chronic illness
KW - coping
KW - disease burden
KW - headache
KW - patient-centered
KW - quality of life
UR - http://www.scopus.com/inward/record.url?scp=85107236238&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85107236238&partnerID=8YFLogxK
U2 - 10.1111/head.14151
DO - 10.1111/head.14151
M3 - Article
C2 - 34081779
AN - SCOPUS:85107236238
SN - 0017-8748
VL - 61
SP - 1004
EP - 1020
JO - Headache
JF - Headache
IS - 7
ER -