Patient reported outcome measures in Waldenström macroglobulinaemia: A real‐world data analysis from the WMUK Rory Morrison Registry
Abstract Waldenström macroglobulinaemia (WM) is an incurable chronic B‐cell malignancy, but highly responsive to treatment. Treatments include fixed‐duration chemotherapy and continuous oral chemoimmunotherapy. In this expanding field, it is important to have reliable information on the impact of th...
| Main Authors: | , , , , , , , , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
Wiley
2023-02-01
|
| Series: | eJHaem |
| Subjects: | |
| Online Access: | https://doi.org/10.1002/jha2.640 |
| _version_ | 1797263252329070592 |
|---|---|
| author | Jahanzaib Khwaja Encarl Uppal Sotirios Bristogiannis Helen McCarthy Jaimal Kothari Ali Rismani Harriet Scorer Jane Nicholson Dima El‐Sharkawi Shirley D'Sa Charalampia Kyriakou |
| author_facet | Jahanzaib Khwaja Encarl Uppal Sotirios Bristogiannis Helen McCarthy Jaimal Kothari Ali Rismani Harriet Scorer Jane Nicholson Dima El‐Sharkawi Shirley D'Sa Charalampia Kyriakou |
| author_sort | Jahanzaib Khwaja |
| collection | DOAJ |
| description | Abstract Waldenström macroglobulinaemia (WM) is an incurable chronic B‐cell malignancy, but highly responsive to treatment. Treatments include fixed‐duration chemotherapy and continuous oral chemoimmunotherapy. In this expanding field, it is important to have reliable information on the impact of the various therapies on patients’ quality of life (QoL). Patient reported outcome measures (PROMs) are increasingly recognised as important to understand patient experience of disease beyond traditional clinical outcome measures. Four QoL questionnaires (EORTC QLQ‐C30 [European Organisation for Research and Treatment of Cancer quality of life core questionnaire], BIPQ [Brief Illness Perception Questionnaire], HADS [Hospital Anxiety and Depression Scale], EQ‐5D‐5L [EuroQoL 5‐dimensional descriptive system questionnaire]) are embedded in the UK national WM registry, the Rory Morrison Registry. We reviewed the results from a snapshot of PROMs. As of November 2021, 155 patients completed PROM data with 98% completion rate across all 58 questions. Complete clinical information was available for 52 patients. The majority of QoL questions (69%) failed to elicit a notable median response. Only four questions elicited statistically significant responses when comparing groups, and these were exclusively found in the EuroQoL‐5D‐5L and HADS questionnaires. Our data suggest that widely used questionnaires may not be suitable for patients with WM. We advocate the development of WM‐specific outcome measures to overcome this. |
| first_indexed | 2024-03-12T14:06:35Z |
| format | Article |
| id | doaj.art-52af3084844e4d78a028f05c5990f610 |
| institution | Directory Open Access Journal |
| issn | 2688-6146 |
| language | English |
| last_indexed | 2024-04-25T00:10:03Z |
| publishDate | 2023-02-01 |
| publisher | Wiley |
| record_format | Article |
| series | eJHaem |
| spelling | doaj.art-52af3084844e4d78a028f05c5990f6102024-03-13T13:30:48ZengWileyeJHaem2688-61462023-02-014122122510.1002/jha2.640Patient reported outcome measures in Waldenström macroglobulinaemia: A real‐world data analysis from the WMUK Rory Morrison RegistryJahanzaib Khwaja0Encarl Uppal1Sotirios Bristogiannis2Helen McCarthy3Jaimal Kothari4Ali Rismani5Harriet Scorer6Jane Nicholson7Dima El‐Sharkawi8Shirley D'Sa9Charalampia Kyriakou10Department of Haematology University College London Hospitals NHS Foundation Trust London UKDepartment of Haematology University College London Hospitals NHS Foundation Trust London UKDepartment of Haematology University College London Hospitals NHS Foundation Trust London UKDepartment of Haematology Royal Bournemouth Hospital Bournemouth UKDepartment of Haematology Oxford University Hospitals NHS Foundation Trust Oxford UKDepartment of Haematology University College London Hospitals NHS Foundation Trust London UKWMUK Cheshire UKWMUK Cheshire UKDepartment of Haematology The Royal Marsden Hospital NHS Foundation Trust London UKDepartment of Haematology University College London Hospitals NHS Foundation Trust London UKDepartment of Haematology University College London Hospitals NHS Foundation Trust London UKAbstract Waldenström macroglobulinaemia (WM) is an incurable chronic B‐cell malignancy, but highly responsive to treatment. Treatments include fixed‐duration chemotherapy and continuous oral chemoimmunotherapy. In this expanding field, it is important to have reliable information on the impact of the various therapies on patients’ quality of life (QoL). Patient reported outcome measures (PROMs) are increasingly recognised as important to understand patient experience of disease beyond traditional clinical outcome measures. Four QoL questionnaires (EORTC QLQ‐C30 [European Organisation for Research and Treatment of Cancer quality of life core questionnaire], BIPQ [Brief Illness Perception Questionnaire], HADS [Hospital Anxiety and Depression Scale], EQ‐5D‐5L [EuroQoL 5‐dimensional descriptive system questionnaire]) are embedded in the UK national WM registry, the Rory Morrison Registry. We reviewed the results from a snapshot of PROMs. As of November 2021, 155 patients completed PROM data with 98% completion rate across all 58 questions. Complete clinical information was available for 52 patients. The majority of QoL questions (69%) failed to elicit a notable median response. Only four questions elicited statistically significant responses when comparing groups, and these were exclusively found in the EuroQoL‐5D‐5L and HADS questionnaires. Our data suggest that widely used questionnaires may not be suitable for patients with WM. We advocate the development of WM‐specific outcome measures to overcome this.https://doi.org/10.1002/jha2.640lymphoid malignanciesquality of lifeWaldenstrom macroglobulinaemia |
| spellingShingle | Jahanzaib Khwaja Encarl Uppal Sotirios Bristogiannis Helen McCarthy Jaimal Kothari Ali Rismani Harriet Scorer Jane Nicholson Dima El‐Sharkawi Shirley D'Sa Charalampia Kyriakou Patient reported outcome measures in Waldenström macroglobulinaemia: A real‐world data analysis from the WMUK Rory Morrison Registry eJHaem lymphoid malignancies quality of life Waldenstrom macroglobulinaemia |
| title | Patient reported outcome measures in Waldenström macroglobulinaemia: A real‐world data analysis from the WMUK Rory Morrison Registry |
| title_full | Patient reported outcome measures in Waldenström macroglobulinaemia: A real‐world data analysis from the WMUK Rory Morrison Registry |
| title_fullStr | Patient reported outcome measures in Waldenström macroglobulinaemia: A real‐world data analysis from the WMUK Rory Morrison Registry |
| title_full_unstemmed | Patient reported outcome measures in Waldenström macroglobulinaemia: A real‐world data analysis from the WMUK Rory Morrison Registry |
| title_short | Patient reported outcome measures in Waldenström macroglobulinaemia: A real‐world data analysis from the WMUK Rory Morrison Registry |
| title_sort | patient reported outcome measures in waldenstrom macroglobulinaemia a real world data analysis from the wmuk rory morrison registry |
| topic | lymphoid malignancies quality of life Waldenstrom macroglobulinaemia |
| url | https://doi.org/10.1002/jha2.640 |
| work_keys_str_mv | AT jahanzaibkhwaja patientreportedoutcomemeasuresinwaldenstrommacroglobulinaemiaarealworlddataanalysisfromthewmukrorymorrisonregistry AT encarluppal patientreportedoutcomemeasuresinwaldenstrommacroglobulinaemiaarealworlddataanalysisfromthewmukrorymorrisonregistry AT sotiriosbristogiannis patientreportedoutcomemeasuresinwaldenstrommacroglobulinaemiaarealworlddataanalysisfromthewmukrorymorrisonregistry AT helenmccarthy patientreportedoutcomemeasuresinwaldenstrommacroglobulinaemiaarealworlddataanalysisfromthewmukrorymorrisonregistry AT jaimalkothari patientreportedoutcomemeasuresinwaldenstrommacroglobulinaemiaarealworlddataanalysisfromthewmukrorymorrisonregistry AT alirismani patientreportedoutcomemeasuresinwaldenstrommacroglobulinaemiaarealworlddataanalysisfromthewmukrorymorrisonregistry AT harrietscorer patientreportedoutcomemeasuresinwaldenstrommacroglobulinaemiaarealworlddataanalysisfromthewmukrorymorrisonregistry AT janenicholson patientreportedoutcomemeasuresinwaldenstrommacroglobulinaemiaarealworlddataanalysisfromthewmukrorymorrisonregistry AT dimaelsharkawi patientreportedoutcomemeasuresinwaldenstrommacroglobulinaemiaarealworlddataanalysisfromthewmukrorymorrisonregistry AT shirleydsa patientreportedoutcomemeasuresinwaldenstrommacroglobulinaemiaarealworlddataanalysisfromthewmukrorymorrisonregistry AT charalampiakyriakou patientreportedoutcomemeasuresinwaldenstrommacroglobulinaemiaarealworlddataanalysisfromthewmukrorymorrisonregistry |