Menú Cerrar

Public Priorities for Osteoporosis and Fracture Research: Results From a Focus Group Study

Ashley Hawarden 1 2Clare Jinks 3Waheed Mahmood 3Laurna Bullock 3Steven Blackburn 3Stephen Gwilym 4Zoe Paskins 3 5

Arch Osteoporos. 2020 Jun 16;15(1):89. doi: 10.1007/s11657-020-00766-9.

Abstract

Four focus groups were conducted with members of the public to identify important areas for future osteoporosis research. Participants identified priorities to increase public awareness of osteoporosis, reduce delays in diagnosis, improve communication between healthcare providers and to improve follow-up and information provision about causes of osteoporosis, medication harms and prognosis.

Purpose: Patients and the public must be involved in setting research agendas to ensure relevant and impactful questions are prioritised. This study aimed to understand what people living with osteoporosis and fragility fractures felt was important to research, to inform the content of a national survey on research priorities in this area.

Methods: Focus groups were conducted with members of the public with experience of osteoporosis or fragility fractures. The topic guide was co-developed with a patient and public involvement research user group, and explored participants’ experiences of osteoporosis including diagnosis, management and effect upon their lives, what aspects of their ongoing care was most important to them and what about their care or condition could be improved. Focus groups were audio-recorded, transcribed and analysed thematically.

Results: A total of twenty-three participants were recruited to four focus groups. Analysis identified two main themes: challenges in living with osteoporosis and healthcare services for osteoporosis. Information needs was a further cross-cutting theme. Participants called for increased public awareness of osteoporosis and wanted healthcare services to address conflicting messages about diet, exercise and medication. Participants described long delays in diagnosis, poor communication between primary and secondary care and the need for structured follow-up as important areas for future research to address.

Conclusion: The findings from this study provide an understanding of research priorities from the perspective of patients and the public, have informed the content of a national survey and have implications for patient education, health services research and policy.

Delegaciones y Núcleos de Trabajo

Juntas Directivas

Delegaciones

Edo. Bolívar

Presidente: Dr. Guillermo Herrera (Ginecólogo)

Secretario: Dra. Falva Acosta (Gineco-Obstetra)

Tesorero: Dra. Ximena Madrid (Cardiología)

Vocal: Dra. Wilmania Bouchard Dra. Mercedes Santomauro (Endocrinología)

Edo. Mérida

Presidente: Dra. María Eugenia Noguera  (Ginecobstetra)

Secretario: Dra. Nazira Monsalve (Ginecobstetra)

Tesorero: Dra. Juleida Askul (Endocrinóloga)

Vocal: Dra. Lelis Quintero (Ginecobstetra)

Vocal: Dra. Maira Useche (Cardióloga)

Edo. Táchira

Presidente: Dr. Álvaro Padilla  (Ginecología y Obstetricia)

Secretario: Dra. Raiza Bontemps (Ginecología y Obstetricia)

Tesorero: Dr. Luis Ernesto Jaimes (Endocrinología)

Vocal: Dra. Maria Hercilia Esteva (Reumatología)

Vocal: Dr. Renny Cárdenas  (Traumatología)

Núcleos de Trabajo

Edo. Falcón

Presidente: Dra. Ma. Auxiliadora Curiel  (Gineco-Obstetra)

Secretario: Dr. Arnaldo Acosta (Endocrinólogo).

Tesorero: Dra. Lourdes Aldama (Gineco-Obstetra)

Edo. Sucre

Presidente: Dra. Haydee Rodríguez de Sánchez  (Ginecología)

Secretario: Dra. Esmely Salazar  (Ginecología y Obstetricia)

Tesorero: Dr. Luis Diaz (Cardiología)

Miembros Fundadores

Miembros Fundadores ( Sociedad Venezolana de Osteoporosis)

  1. Ada Perdomo
  2. Adolfo Melendez
  3. Alberto Zuloaga
  4. Alfonso Jacir
  5. Alfonso Vergara
  6. Alfredo Guariguata
  7. Alfredo Posada
  8. Anabela San Vicente
  9. Andrés M.Amaya Angulo
  10. Andrés Mendoza
  11. Andrés Monterola
  12. Antonio De Santolo
  13. Antonio Tarrazzi Salazar
  14. Bernardo Birnbaum
  15. Carlos Sandrea
  16. Carlos Soto Rivera
  17. Carmen Afonzo De Hernández
  18. Daniela Jakubowicz
  19. Douglas Ponce
  20. Douglas Urbina Oteiza
  21. Eddie Kaswan
  22. Eddy Alberto Salazar
  23. Eduardo Coll García
  24. Eladio R. Diaz Camero
  25. Elías Salazar Aboud
  26. Elie Nehme
  27. Elio Antonio Romero S.
  28. Eva Essenfeld De Sekler
  29. Eva Mariela Salazar
  30. Ezequiel Bellorin Font
  31. Ezequiel Hidalgo
  32. Florencio Quintero Rojo
  33. Francisco Carelli F
  34. Francisco Pinto
  35. Francisco Tapanes
  36. Frank Gorrochotegui
  37. Froino Gartner K.
  38. Gary Sterba
  39. Guillermo Bajares
  40. Gustavo Galué
  41. Haydeé Ríos De Vielma
  42. Héctor Marcano
  43. Humberto Acosta
  44. Ibrahim Pazos
  45. Ildemar Moncada
  46. Imperia Brajkovich
  47. Isidoro Brosnstein
  48. Israel Montes De Oca
  49. Ivan Stekman
  50. Jonny Engler
  51. José A. Zurita
  52. José Delgado
  53. José R García Cervén
  54. José Quijada Palacios
  55. José Rafael Roura
  56. José Weissinger
  57. Juan Antonio Yabur
  58. Juan Bautista Zambrano
  59. Juan F. Duque Pernía
  60. Julieta V. De Bello
  61. Jusés Mazzei Berti
  62. Leopoldo Baptista
  63. Leslie Sánchez
  64. Lilia Pérez De Rivero
  65. Luis A. Hernández
  66. Luis Alberto Blanco Acevedo
  67. Luis Alejandro Rodriguez
  68. Luis Alfredo Rodriguez
  69. Luis E. Rodriguez Mora
  70. Luis J. González Leon
  71. Mariá Eugenia De D´Empaire
  72. Marcos Troccoli
  73. María Carmen Cordido
  74. Maria Cristina Angelino De Blanco
  75. Maria Luisa Cumaná De López
  76. María Maiello De Betancourt
  77. María Zoraida Pacheco
  78. Mario Ogni
  79. Miguel Padilla
  80. Miriam Alvarado
  81. Moisés R.Attias
  82. Nancy Negrín De Moreno
  83. Nujem Szomsteim
  84. Oscar J. Solís
  85. Oswaldo Pbregón
  86. Pablo Amair M
  87. Pedro Armas
  88. Pedro Jose Vicentelli
  89. Pedro Monsalve
  90. Pedro Teppa
  91. Rafael Rodríguez Cedeño
  92. Ramón Castro
  93. Ramón Francisco Soto Sánchez
  94. Ramón Franco
  95. Raúl J. Fernández Barboza
  96. Raúl Veitia
  97. Régulo Millán
  98. Rodrigo Infante
  99. Ronal Paredes
  100. Rosa Hernández Gandolfi
  101. Rubén Jaén
  102. Ruben Quintero Monasterios
  103. Rufino Rengifo
  104. Salvador Rivas
  105. Samuel Abbo
  106. Sergio Tovar
  107. Vicente Franco De Lugo
  108. Virgilio Paz Martínez
  109. Xabier Arozena
  110. Yolanda Díaz De Perdomo
  111. Yolanda Salazar
  112. Zoraida Paz

 

Miembros Fundadores ( SOVEMO)

  1. Alfredo Guariguata
  2. Anabella San Vicente
  3. Andrés Mendoza
  4. Antonio De Santolo
  5. Antonio Tarrazzi
  6. Bernardo Birbaum
  7. Carlos Soto Rivera
  8. Desiderio Rincón Pacheco
  9. Douglas Ponce
  10. Douglas Urbina
  11. Edgar Nieto
  12. Eduardo Coll García
  13. Eladio Díaz Camero
  14. Elias Salazar
  15. Elie Nehme
  16. Eva Mariela Salazar
  17. Farid Atías
  18. Florencio Quintero Rojo
  19. Francisco Tapanes
  20. Frank Gorrochotegui
  21. Froino Gartner
  22. Gary Sterba
  23. Gregorio Riera
  24. Guillermo Bajares
  25. Gunter Lentz
  26. Humberto Acosta
  27. Ibrahim Pazos
  28. Isidoro Bronstein
  29. Jonny Engler
  30. Jorge Cedeño
  31. José Delgado
  32. José R. García
  33. Juan Antonio Yabur
  34. Julieta De Bello
  35. Leopoldo Baptista
  36. Leslie Sánchez
  37. Luis González León
  38. María C. Maiello De Betancourt
  39. María Carmen Cordido
  40. María Cristina Angelino De Blanco
  41. María Eugenia De D’empaire
  42. Mariela Bajares De Lilue
  43. Miriam Alvarado
  44. Moisés Atias
  45. Nujem Szomstein
  46. Pablo Amair
  47. Pedro Armas
  48. Pedro Vicentelli
  49. Ramón González Cerruti
  50. Raúl Fernández
  51. Raúl Veitía
  52. Rosa Hernández
  53. Rubén Quintero
  54. Rufino Rengifo
  55. Sergio Tovar
  56. Valmore Quintero