Physical, Emotional and Social Pain Communication by Patients Diagnosed and Living with Multiple Myeloma

Abstract

Aim: To describe physical, social and emotional aspects of pain self-reported by patients with multiple myeloma (MM), and patient–physician communication of physical pain. Materials & methods: We analyzed self-reported data from 330 adults receiving anti-MM therapy in Germany and Italy on health-related quality of life (European Organisation for Research and Treatment of Cancer Quality of Life Core-30 Questionnaire version 3, -MY20) and bone pain symptoms. Results: Patients experienced clinically important physical (69%), emotional (58%) and social (22%) pain. Less than three-quarters of physicians’ records matched patients’ perception of bone pain (71.5%), with bone pain not recorded in 19.7% of patients experiencing it. Nearly half of physicians underestimated bone pain severity. Conclusion: Patients with MM experience physical, social and emotional pain. Discordance regarding bone pain symptoms and severity was observed, suggesting the need for improved communication.

Keywords::

• communication
• emotional
• multiple myeloma
• pain
• physical
• social

Supplementary data

To view the supplementary data that accompany this paper please visit the journal website at: www.tandfonline.com/doi/suppl/10.2217/pmt-2021-0013

Author contributions

All authors were involved in conception or design, or analysis and interpretation of data; drafting and revising the article; providing intellectual content of critical importance to the work described and final approval of the version to be published, and therefore meet the criteria for authorship in accordance with the International Committee of Medical Journal Editors (ICMJE) guidelines. In addition, all named authors take responsibility for the integrity of the work as a whole, and have given their approval for this version to be published.

Financial & competing interests disclosure

Funding for this research was provided by Amgen Ltd. B Quinn is an employee of Queens University Belfast. H Ludwig is an employee of the Wilhelminen Cancer Research Institute. He has received previous research support from Takeda and Amgen. He has also been a Speaker or had Advisory Board Honoraria from Celgene, Bristol-Meyers, Takeda, Janssen, Amgen and Sanofi. He received no direct benefit from any of these companies in relation to this specific manuscript. A Bailey, K Khela and A Rider are employees of Adelphi Real World. A Seesaghur is an employee of Amgen A Marongiu and KB Carlson were Amgen employees at the time of the study but are no longer Amgen employees. The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed.

Medical writing support under the guidance of the authors was provided by D Ho (ScriboMedica Ltd, Helsinki, Finland), on behalf of Adelphi Real World and Amgen, in accordance with Good Publication Practice (GPP3) guidelines. Editorial support was provided by G Sidgwick, of Adelphi Real World. Statistical support was provided by G Milligan, of Adelphi Real World.

Ethical conduct of research

Physicians consented to participate and provide patient medical information during screening. Patients provided informed consent prior completion of questionnaires, with all data aggregated and de-identified before receipt. DSP data were collected according to procedures established at Adelphi Real World and are compliant with the European Pharmaceutical Market Research Association (EphMRA) Code of Conduct, the Health Information Technology for Economic and Clinical Health (HITECH) Act and the Health Insurance Portability and Accountability Act (HIPAA) as appropriate in each specific region or territory. International approval for the survey was also granted by the Freiburger Ethik Kommission International (FEKI (017/1791).

Data sharing statement

Data collection was undertaken by Adelphi Real World as part of an independent survey, entitled the Adelphi Real World Multiple Myeloma Disease Specific Programme. The analysis described in this study used data obtained from this survey and was funded by Amgen Ltd, who did not influence the original survey through either contribution to the design of questionnaires or data collection. All data that support the findings of this study are the intellectual property of Adelphi Real World and so are not publicly available. Data are however available upon reasonable request and with permission of Adelphi Real World.

Additional information

Funding

Funding for this research was provided by Amgen Ltd. B Quinn is an employee of Queens University Belfast. H Ludwig is an employee of the Wilhelminen Cancer Research Institute. He has received previous research support from Takeda and Amgen. He has also been a Speaker or had Advisory Board Honoraria from Celgene, Bristol-Meyers, Takeda, Janssen, Amgen and Sanofi. He received no direct benefit from any of these companies in relation to this specific manuscript. A Bailey, K Khela and A Rider are employees of Adelphi Real World. A Seesaghur is an employee of Amgen A Marongiu and KB Carlson were Amgen employees at the time of the study but are no longer Amgen employees. The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed. Medical writing support under the guidance of the authors was provided by D Ho (ScriboMedica Ltd, Helsinki, Finland), on behalf of Adelphi Real World and Amgen, in accordance with Good Publication Practice (GPP3) guidelines. Editorial support was provided by G Sidgwick, of Adelphi Real World. Statistical support was provided by G Milligan, of Adelphi Real World.