Priority 12 from the Rare Musculoskeletal Diseases in Adulthood PSP

UNCERTAINTY: Are there more effective, long-term treatments for pain (including non-opioid drugs and non-drug treatments)?  (JLA PSP Priority 12)
Overall ranking 12
JLA question ID 0076/12
Explanatory note Not available for this PSP

A randomized, double blind, placebo-controlled trial of alendronate treatment for fibrous dysplasia of bone. Boyce AM1, Kelly MH, Brillante BA, Kushner H, Wientroub S, Riminucci M, Bianco P, Robey PG, Collins MT. J Clin Endocrinol Metab. 2014 Nov;99(11):4133-40. (n=24 adults)

Outcome of Long-Term Bisphosphonate Therapy in McCune-Albright Syndrome and Polyostotic Fibrous Dysplasia. Majoor BC1,2, Appelman-Dijkstra NM1,3, Fiocco M4,5, van de Sande MA1,2, Dijkstra PS1,2, Hamdy NA1,3. J Bone Miner Res. 2017 Feb;32(2):264-276. (n=41)

Total hip arthroplasty in patients with underlying fibrous dysplasia. Sierra RJ1, Cabanela ME. Orthopedics. 2009 May;32(5):320. (n=11)

Long-term effects of intravenous pamidronate in fibrous dysplasia of bone. Chapurlat RD1, Delmas PD, Liens D, Meunier PJ. J Bone Miner Res. 1997 Oct;12(10):1746-52. (n=20)

Bisphosphonate treatment of bone fibrous dysplasia in McCune-Albright syndrome. Lala R1, Matarazzo P, Andreo M, Marzari D, Bellone J, Corrias A, de Sanctis C; Study Group for Gs alpha Protein Related Diseases of the Italian Society for Pediatric Endocrinology and Diabetes. Pediatr Endocrinol Metab. 2006 May;19 Suppl 2:583-93. (n=14 5-18.7yr)

Pamidronate treatment in bone fibrous dysplasia in children and adolescents with McCune-Albright syndrome. Matarazzo P1, Lala R, Masi G, Andreo M, Altare F, de Sanctis C. J Pediatr Endocrinol Metab. 2002;15 Suppl 3:929-37.

Health Research Classification System category Musculoskeletal
Extra information provided by this PSP
Original uncertainty examples FD: What is the optimal way of treating pain in fibrous dysplasia? ~ What are some appropriate pain relief options which don't involve opiods? ~ Does acupuncture help with pain relief in people with OI meaning that strong drugs, which have a sedative effect, are no longer required?  ~ Would like more information on what pain relief works ? ~ What are the best pain relief options for people with OI? 
Submitted by Individual survey submissions categorised by Health or Social Care Professionals, Organisations representing people with rare musculoskeletal diseases, people with rare musculoskeletal diseases, relatives/carers/friends, Other.  For full details of the type of submitter for each individual question, please see the spreadsheet of data held on the JLA website.
PSP information
PSP unique ID 0076
PSP name Rare Musculoskeletal Diseases in Adulthood
Total number of uncertainties identified by this PSP. 39  (To see a full list of all uncertainties identified, please see the detailed spreadsheet held on the JLA website)
Date of priority setting workshop 18 June 2018