Exploring the educational needs of patients with cutaneous lymphoma using an educational needs assessment tool
BackgroundCutaneous T-cell lymphomas (CTCL) are a group of rare non-Hodgkin lymphomas characterized by initial localization of malignant T-lymphocytes in the skin. Support and information from nurses and patient support groups have proven useful for patients with CTCL, but little is known about the...
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Frontiers Media S.A.
2024-08-01
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| Series: | Frontiers in Oncology |
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| Online Access: | https://www.frontiersin.org/articles/10.3389/fonc.2024.1433821/full |
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| author | Lina U. Ivert Lina U. Ivert Anna H. Winther Anna H. Winther Pontus Jonsson Pontus Jonsson Hanna Brauner Hanna Brauner |
| author_facet | Lina U. Ivert Lina U. Ivert Anna H. Winther Anna H. Winther Pontus Jonsson Pontus Jonsson Hanna Brauner Hanna Brauner |
| author_sort | Lina U. Ivert |
| collection | DOAJ |
| description | BackgroundCutaneous T-cell lymphomas (CTCL) are a group of rare non-Hodgkin lymphomas characterized by initial localization of malignant T-lymphocytes in the skin. Support and information from nurses and patient support groups have proven useful for patients with CTCL, but little is known about the educational needs of these patients.ObjectivesTo investigate the self-reported educational needs among CTCL patients using an educational needs assessment tool and to explore differences related to sex, age, disease duration, clinical stage, and education.MethodsThis observational single center study analyzed 70 patients with CTCL in routine dermatological outpatient care. The patients were asked to complete a questionnaire to capture their educational needs in regard to CTCL. The questionnaire was inspired by the educational needs assessment tool, designed and validated for patients with rheumatoid disease. The questionnaire included a general question, “In general, how much information do you want to receive about your lymphoma disease?”, and five domains covering information relating to disease process (6 items), treatment (4 items), feelings (2 items), self-management of itch, sleep, and rest (2 items), and support systems (3 items). The domain scores ranged from 0 to 18 (total score from 0 to 51). Each domain score was presented as a mean percentage of the maximum possible domain score.ResultsWhen asked “In general, how much information do you need?”, females wanted to know more compared with males (2.6 vs. 2.1, p=0.006), and patients with higher education wanted to know more than patients with lower education (2.5 vs. 2.0, p=0.025). The domains concerning treatment (80%) and disease process (75%) revealed the greatest needs for education. Patients with a disease duration <2 years reported a greater educational need for the domain support system, compared with patients with longer disease duration. Patients with lower education reported a greater educational need about feelings compared with patients with higher education.ConclusionsCTCL patients in the cohort, particularly females, expressed a need for education, especially regarding disease process and treatment. A deeper understanding of the educational needs would enable healthcare providers to give personalized information. |
| format | Article |
| id | doaj-art-3728509c0ac94e70a3d7f6e180b7b142 |
| institution | Kabale University |
| issn | 2234-943X |
| language | English |
| publishDate | 2024-08-01 |
| publisher | Frontiers Media S.A. |
| record_format | Article |
| series | Frontiers in Oncology |
| spelling | doaj-art-3728509c0ac94e70a3d7f6e180b7b1422024-12-11T12:41:30ZengFrontiers Media S.A.Frontiers in Oncology2234-943X2024-08-011410.3389/fonc.2024.14338211433821Exploring the educational needs of patients with cutaneous lymphoma using an educational needs assessment toolLina U. Ivert0Lina U. Ivert1Anna H. Winther2Anna H. Winther3Pontus Jonsson4Pontus Jonsson5Hanna Brauner6Hanna Brauner7Dermatology and Venereology Unit, Department of Medicine Solna, Karolinska Institutet, Stockholm, SwedenDepartment of Dermatology, Karolinska University Hospital, Stockholm, SwedenDermatology and Venereology Unit, Department of Medicine Solna, Karolinska Institutet, Stockholm, SwedenDepartment of Dermatology, Karolinska University Hospital, Stockholm, SwedenDermatology and Venereology Unit, Department of Medicine Solna, Karolinska Institutet, Stockholm, SwedenDepartment of Dermatology, Karolinska University Hospital, Stockholm, SwedenDermatology and Venereology Unit, Department of Medicine Solna, Karolinska Institutet, Stockholm, SwedenDepartment of Dermatology, Karolinska University Hospital, Stockholm, SwedenBackgroundCutaneous T-cell lymphomas (CTCL) are a group of rare non-Hodgkin lymphomas characterized by initial localization of malignant T-lymphocytes in the skin. Support and information from nurses and patient support groups have proven useful for patients with CTCL, but little is known about the educational needs of these patients.ObjectivesTo investigate the self-reported educational needs among CTCL patients using an educational needs assessment tool and to explore differences related to sex, age, disease duration, clinical stage, and education.MethodsThis observational single center study analyzed 70 patients with CTCL in routine dermatological outpatient care. The patients were asked to complete a questionnaire to capture their educational needs in regard to CTCL. The questionnaire was inspired by the educational needs assessment tool, designed and validated for patients with rheumatoid disease. The questionnaire included a general question, “In general, how much information do you want to receive about your lymphoma disease?”, and five domains covering information relating to disease process (6 items), treatment (4 items), feelings (2 items), self-management of itch, sleep, and rest (2 items), and support systems (3 items). The domain scores ranged from 0 to 18 (total score from 0 to 51). Each domain score was presented as a mean percentage of the maximum possible domain score.ResultsWhen asked “In general, how much information do you need?”, females wanted to know more compared with males (2.6 vs. 2.1, p=0.006), and patients with higher education wanted to know more than patients with lower education (2.5 vs. 2.0, p=0.025). The domains concerning treatment (80%) and disease process (75%) revealed the greatest needs for education. Patients with a disease duration <2 years reported a greater educational need for the domain support system, compared with patients with longer disease duration. Patients with lower education reported a greater educational need about feelings compared with patients with higher education.ConclusionsCTCL patients in the cohort, particularly females, expressed a need for education, especially regarding disease process and treatment. A deeper understanding of the educational needs would enable healthcare providers to give personalized information.https://www.frontiersin.org/articles/10.3389/fonc.2024.1433821/fullmycosis fungoides (MF)cutaneous T-cell lymphoma (CTCL)educational needspatient educationself-reported questionnaire |
| spellingShingle | Lina U. Ivert Lina U. Ivert Anna H. Winther Anna H. Winther Pontus Jonsson Pontus Jonsson Hanna Brauner Hanna Brauner Exploring the educational needs of patients with cutaneous lymphoma using an educational needs assessment tool Frontiers in Oncology mycosis fungoides (MF) cutaneous T-cell lymphoma (CTCL) educational needs patient education self-reported questionnaire |
| title | Exploring the educational needs of patients with cutaneous lymphoma using an educational needs assessment tool |
| title_full | Exploring the educational needs of patients with cutaneous lymphoma using an educational needs assessment tool |
| title_fullStr | Exploring the educational needs of patients with cutaneous lymphoma using an educational needs assessment tool |
| title_full_unstemmed | Exploring the educational needs of patients with cutaneous lymphoma using an educational needs assessment tool |
| title_short | Exploring the educational needs of patients with cutaneous lymphoma using an educational needs assessment tool |
| title_sort | exploring the educational needs of patients with cutaneous lymphoma using an educational needs assessment tool |
| topic | mycosis fungoides (MF) cutaneous T-cell lymphoma (CTCL) educational needs patient education self-reported questionnaire |
| url | https://www.frontiersin.org/articles/10.3389/fonc.2024.1433821/full |
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