2,283
Views
4
CrossRef citations to date
0
Altmetric
Research Papers

The experiences and beliefs of people with severe haemophilia and healthcare professionals on pain management, and their views of using exercise as an aspect of intervention: a qualitative study

ORCID Icon, ORCID Icon, ORCID Icon, ORCID Icon & ORCID Icon
Pages 8420-8428 | Received 13 Aug 2021, Accepted 09 Dec 2021, Published online: 24 Dec 2021

References

  • Berntorp E, Fischer K, Hart DP, et al. Haemophilia. Nat Rev Dis Primers. 2021;7(1):45.
  • Bolton-Maggs PHB, Pasi KJ. Haemophilias A and B. Lancet. 2003;361(9371):1801–1809.
  • Lafeber FPJG, Miossec P, Valentino LA. Physiopathology of haemophilic arthropathy. Haemophilia. 2008;14(s4):3–9.
  • Blanchette VS, Key NS, Ljung LR, et al. Definitions in hemophilia: communication from the SSC of the ISTH. J Thromb Haemost. 2014;12(11):1935–1939.
  • Witkop M, Neff A, Buckner TW, et al. Self-reported prevalence, description and management of pain in adults with haemophilia: methods, demographics and results from the pain, functional impairment, and quality of life (P-FiQ) study. Haemophilia. 2017;23(4):556–565.
  • Tagliaferri A, Franchini M, Rivolta GF, et al. Pain assessment and management in haemophilia: a survey among Italian patients and specialist physicians. Haemophilia. 2018;24(5):766–773.
  • Pattison LA, Krock E, Svensson CI, et al. Cell–cell interactions in joint pain: rheumatoid arthritis and osteoarthritis. Pain. 2021;162(3):714–717.
  • Roussel NA. Gaining insight into the complexity of pain in patients with haemophilia: state-of-the-art review on pain processing. Haemophilia. 2018;24(S6):3–8.
  • Forsyth AL, Gregory M, Nugent D, et al. Haemophilia experiences, results and opportunities (HERO) study: survey methodology and population demographics. Haemophilia. 2014;20(1):44–51.
  • van Genderen FR, Fischer K, Heijnen L, et al. Pain and functional limitations in patients with severe haemophilia. Haemophilia. 2006;12(2):147–153.
  • Kalnins W, Schelle G, Jost K, et al. Pain therapy in haemophilia in Germany. Patient survey (BESTH study). Hamostaseologie. 2015;35(2):167–173.
  • Kempton CL, Recht M, Neff A, et al. Impact of pain and functional impairment in US adults with haemophilia: patient-reported outcomes and musculoskeletal evaluation in the pain, functional impairment and quality of life (P-FiQ) study. Haemophilia. 2018;24(2):261–270.
  • Pinto PR, Paredes AC, Almeida A. Pain prevalence, characteristics, and impact among people with hemophilia: findings from the first Portuguese survey and implications for pain management. Pain Med. 2020;21(3):458–471.
  • Buckner TW, Batt K, Quon D, et al. Assessments of pain, functional impairment, anxiety, and depression in US adults with hemophilia across patient-reported outcome instruments in the pain, functional impairment, and quality of life (P-FiQ) study. Eur J Haematol. 2018;100:5–13.
  • Forsyth AL, Witkop M, Lambing A, et al. Associations of quality of life, pain, and self-reported arthritis with age, employment, bleed rate, and utilization of hemophilia treatment center and health care provider services: results in adults with hemophilia in the HERO study. Patient Prefer Adherence. 2015;9:1549–1560.
  • Brodin E, Sunnerhagen KS, Baghaei F, et al. Persons with haemophilia in Sweden – experiences and strategies in everyday life. A single centre study. PLOS One. 2015;10(10):e0139690.
  • Witkop M, Lambing A, Divine G, et al. A national study of pain in the bleeding disorders community: a description of haemophilia pain. Haemophilia. 2012;18(3):e115–e119.
  • Lambing A, Nichols CD, Munn JE, et al. Patient, caregiver, and provider perceptions of pain and pain management in adolescents and young adults with bleeding disorders. Haemophilia. 2017;23(6):852–860.
  • Buckner TW, Santaella ME, Witkop ML. Management of chronic pain in persons with bleeding disorders: guidance for practical application of the centers for disease control opioid prescribing guidelines. USA: National Hemophilia Federation (MASAC document #206); 2020.
  • Tsoukas C, Eyster ME, Shingo S, et al. Evaluation of the efficacy and safety of etoricoxib in the treatment of hemophilic arthropathy. Blood. 2006;107(5):1785–1790.
  • Rodriguez-Merchan EC, De La Corte-Rodriguez H, Jimenez-Yuste V. Efficacy of celecoxib in the treatment of joint pain caused by advanced haemophilic arthropathy in adult patients with haemophilia A. Haemophilia. 2014;20(3):e225–e227.
  • Arachchillage DRJ, Makris M. Choosing and using non-steroidal anti-inflammatory drugs in haemophilia. Haemophilia. 2016;22(2):179–187.
  • Elander J, Robinson G, Morris J. Randomized trial of a DVD intervention to improve readiness to self-manage joint pain. Pain. 2011;152(10):2333–2341.
  • Paredes AC, Costa P, Fernandes S, et al. Effectiveness of hypnosis for pain management and promotion of health-related quality-of-life among people with haemophilia: a randomised controlled pilot trial. Sci Rep. 2019;9(1):13399.
  • Strike K, Mulder K, Michael R. Exercise for haemophilia. Cochrane Database Syst Rev. 2016;(12):CD011180.
  • McLaughlin P, Hurley M, Chowdary P, et al. Physiotherapy interventions for pain management in haemophilia: a systematic review. Haemophilia. 2020;26(4):667–684.
  • Boccalandro E, Mancuso ME, Riva S, et al. Ageing successfully with haemophilia: a multidisciplinary programme. Haemophilia. 2018;24(1):57–62.
  • Taylor S, Room J, Barker K. Physical activity levels in men with haemophilia-A single centre UK survey. Haemophilia. 2020;26(4):718–725.
  • McLaughlin P, Hurley M, Chowdary P, et al. How does a lifetime of painful experiences influence sensations and beliefs about pain in adults with severe haemophilia? a qualitative study. Disabil Rehabil. 2021. DOI:10.1080/09638288.2021.2018053.
  • Green J. Qualitative methods for health research. 4th ed. London: Sage; 2018.
  • Braun V, Clarke V. Reflecting on reflexive thematic analysis. Qual Res Sport Exerc Health. 2019;11(4):589–597.
  • Braun V, Clarke V. One size fits all? What counts as quality practice in (reflexive) thematic analysis? Qual Res Psychol. 2021;18(3):328–325.
  • Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77–101.
  • Braun V, Clarke V. Can I use TA? Should I use TA? Should I not use TA? Comparing reflexive thematic analysis and other pattern‐based qualitative analytic approaches. Couns Psychother Res. 2021;21(1):37–47.
  • Vegni E, Leone D, Biasoli C, et al. Difficult encounters with a hemophilic patient: the inner perspective of physicians. J Health Psychol. 2014;19(12):1499–1507.
  • Bradshaw E, McClellan C, Whybrow P, et al. Physiotherapy outcome measures of haemophilia acute bleed episodes: what matters to patients? Haemophilia. 2019;25(6):1066–1072.
  • Carville S, Constanti M, Kosky N, et al. Chronic pain (primary and secondary) in over 16s: summary of NICE guidance. BMJ. 2021;373:n895.
  • Krüger S, Hilberg T. Neuropathic pain in patients with haemophilia, that is the question. Hamostaseologie. 2015;35(Suppl. 1):S5–S9.
  • de Williams AC, Davies HT, Chadury Y. Simple pain rating scales hide complex idiosyncratic meanings. Pain. 2000;85(3):457–463.
  • Srivastava A, Santagostino E, Dougall A, et al. WFH guidelines for the management of hemophilia, 3rd edition. Haemophilia. 2020;26(S6):1–158.
  • Reinicke K, Søgaard IS, Mentzler S. Masculinity challenges for men with severe hemophilia. Am J Mens Health. 2019;13(4):1557988319872626.
  • Witkop M, Lambing A, Kachalsky E, et al. Assessment of acute and persistent pain management in patients with haemophilia. Haemophilia. 2011;17(4):612–619.
  • Milder TY, Williams KM, Ritchie JE, et al. Use of NSAIDs for osteoarthritis amongst older-aged primary care patients: engagement with information and perceptions of risk. Age Ageing. 2011;40(2):254–259.
  • Dockerty T, Latham SK, Smith TO. Why don't patients take their analgesics? A meta-ethnography assessing the perceptions of medication adherence in patients with osteoarthritis . Rheumatol Int. 2016;36(5):731–739.
  • Donovan JL, Blake DR, Fleming WG. The patient is not a blank sheet: lay beliefs and their relevance to patient education. Br J Rheumatol. 1989;28(1):58–61.
  • Jones P. The early history of haemophilia treatment: a personal perspective. Br J Haematol. 2000;111(3):719–725.
  • Fransen M, McConnell S, Harmer AR, et al. Exercise for osteoarthritis of the knee: a Cochrane systematic review. Br J Sports Med. 2015;49(24):1554–1557.
  • Cooney JK, Law R-J, Matschke V, et al. Benefits of exercise in rheumatoid arthritis. J Aging Res. 2011;2011:681640.
  • Skou ST, Roos EM. Good life with osteoArthritis in Denmark (GLA:D™): evidence-based education and supervised neuromuscular exercise delivered by certified physiotherapists nationwide. BMC Musculoskelet Disord. 2017;18(1):72.
  • Hurley MV, Walsh NE, Mitchell HL, et al. Clinical effectiveness of a rehabilitation program integrating exercise, self-management, and active coping strategies for chronic knee pain: a cluster randomized trial. Arthritis Rheum. 2007;57(7):1211–1219.
  • Riggs DM, Killingback C. What factors influence physical activity participation in people with rheumatoid arthritis? Phys Ther Rev. 2019;24(6):298–307.
  • Mattis S, Barry V, Taylor N, et al. Disease-related distress among adults with haemophilia: a qualitative study. Haemophilia. 2019;25(6):988–995.
  • Hughes T, Brok-Kristensen M, Gargeya Y, et al. Navigating uncertainty: an examination of how people with haemophilia understand and cope with uncertainty in protection in an ethnographic study. J Haemoph Pract. 2020;7(1):158–164.
  • Taylor S, Toye F, Barker K. Experience of exercise in people with severe haemophilia: a qualitative study. J Haemoph Pract. 2017;4(1):65–71.
  • Young G, Tachdjian R, Baumann K, et al. Comprehensive management of chronic pain in haemophilia. Haemophilia. 2014;20(2):e113–e120.
  • Geenen R, Overman CL, Christensen R, et al. EULAR recommendations for the health professional’s approach to pain management in inflammatory arthritis and osteoarthritis. Ann Rheum Dis. 2018;77(6):797–807.