Neuropathic-like Pain in Fibrous Dysplasia/McCune-Albright Syndrome
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Neuropathic-like Pain in Fibrous Dysplasia/McCune-Albright Syndrome. / Spencer, Tiahna L.; Watts, Laura; Soni, Anushka; Pinedo-Villanueva, Rafael; Heegaard, Anne Marie; Boyce, Alison M.; Javaid, M. Kassim.
In: The Journal of clinical endocrinology and metabolism, Vol. 107, No. 6, 2022, p. e2258-e2266.Research output: Contribution to journal › Journal article › Research › peer-review
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TY - JOUR
T1 - Neuropathic-like Pain in Fibrous Dysplasia/McCune-Albright Syndrome
AU - Spencer, Tiahna L.
AU - Watts, Laura
AU - Soni, Anushka
AU - Pinedo-Villanueva, Rafael
AU - Heegaard, Anne Marie
AU - Boyce, Alison M.
AU - Javaid, M. Kassim
N1 - Publisher Copyright: Published by Oxford University Press on behalf of the Endocrine Society 2022.
PY - 2022
Y1 - 2022
N2 - CONTEXT: Pain is a major symptom in adults with fibrous dysplasia/McCune-Albright syndrome (FD/MAS) and response to current treatments, including bisphosphonates and standard analgesics (nonsteroidal anti-inflammatory drugs and opiates) is unpredictable. No studies have explored whether the type of pain is variable in this patient group. OBJECTIVE: To determine the frequency of neuropathic-like pain in patients with FD/MAS. DESIGN: Retrospective, dual registry study. SETTING: Community. PATIENTS: FD/MAS online registries: the US-based Familial Dysautonomia Foundation (FDF) and the UK-based Rare and Undiagnosed Diseases (RUDY) study. INTERVENTION: Subjects completed questionnaires to evaluate the presence of features of neuropathic-like pain (painDETECT) and the impact on sleep quality (Pittsburgh Sleep Quality Index) and mental health (Hospital Anxiety and Depression Scale). Descriptive statistics were used to characterize the prevalence and associated burden of neuropathic-like pain. MAIN OUTCOME MEASURES: Incidence of neuropathic, nociceptive, and unclear pain. RESULTS: Of 249 participants, one third experienced neuropathic-like pain. This group had statistically significantly (P < 0.001) worse mental well-being and sleep in comparison to those with predominately nociceptive pain. CONCLUSIONS: Neuropathic-like pain is common in patients with FD/MAS and associated with worse quality of life. Evaluation of pain in patients with FD/MAS should include assessment of neuropathic-like pain to guide personalized approaches to treatment and inform future research.
AB - CONTEXT: Pain is a major symptom in adults with fibrous dysplasia/McCune-Albright syndrome (FD/MAS) and response to current treatments, including bisphosphonates and standard analgesics (nonsteroidal anti-inflammatory drugs and opiates) is unpredictable. No studies have explored whether the type of pain is variable in this patient group. OBJECTIVE: To determine the frequency of neuropathic-like pain in patients with FD/MAS. DESIGN: Retrospective, dual registry study. SETTING: Community. PATIENTS: FD/MAS online registries: the US-based Familial Dysautonomia Foundation (FDF) and the UK-based Rare and Undiagnosed Diseases (RUDY) study. INTERVENTION: Subjects completed questionnaires to evaluate the presence of features of neuropathic-like pain (painDETECT) and the impact on sleep quality (Pittsburgh Sleep Quality Index) and mental health (Hospital Anxiety and Depression Scale). Descriptive statistics were used to characterize the prevalence and associated burden of neuropathic-like pain. MAIN OUTCOME MEASURES: Incidence of neuropathic, nociceptive, and unclear pain. RESULTS: Of 249 participants, one third experienced neuropathic-like pain. This group had statistically significantly (P < 0.001) worse mental well-being and sleep in comparison to those with predominately nociceptive pain. CONCLUSIONS: Neuropathic-like pain is common in patients with FD/MAS and associated with worse quality of life. Evaluation of pain in patients with FD/MAS should include assessment of neuropathic-like pain to guide personalized approaches to treatment and inform future research.
KW - fibrous dysplasia
KW - McCune-Albright syndrome
KW - mental health
KW - neuropathic-like pain
KW - nociceptive pain
KW - quality of life
U2 - 10.1210/clinem/dgac120
DO - 10.1210/clinem/dgac120
M3 - Journal article
C2 - 35262711
AN - SCOPUS:85130766457
VL - 107
SP - e2258-e2266
JO - Journal of Clinical Endocrinology and Metabolism
JF - Journal of Clinical Endocrinology and Metabolism
SN - 0013-7227
IS - 6
ER -
ID: 309269579