Woerkom, C.E. van (Claudia Eline) (2014) Analysis of the Web-based tailored Information and support for patients with a Neuroendocrine tumor. thesis, Medicine.
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Abstract
Neuroendocrine tumors (NETs) are a rare type of cancer, which can produce excessive hormones that cause symptoms. NETs can be located in different parts of the body and can give rise to different symptoms depending on the type of hormones they secrete. The patient is confronted with a disease that is difficult to comprehend due to the diversity in presentation, rarity, long delay in diagnosis and its indolent nature. This pilot study aimed to explore the possibilities to improve the need for information in these patients with the help of a tailored website. This pilot study included 20 patients, equally distributed between a control and experimental arm. At baseline, several self-report questionnaires were used to assess the endpoints: perception and satisfaction of received information (EORTC QLQ-INFO 25), distress (Distress Thermometer (DT) and Problem List (PL)) and quality of life (EORTC QLQ-C30 and EORTC QLQ-GINET21). After 12 weeks, the above mentioned questionnaires were assessed again and also included an additional self-report questionnaire to assess the endpoint empowerment (Constructs Empowering Outcomes (CEO)). In addition, the experimental group was also asked to participate in a qualitative interview concerning their opinion of the website. Statistical analyses was performed to calculate effect sizes for the questionnaires and the qualitative interviews were analyzed as well. In general, the patients were very positive about the website. The website has a positive effect on quality of life and decreases distress. Patients feel more confident towards their treatment and feel better informed. Although, patients too feel less optimistic and in control about their future and feel less accepting off their disease. The INFO25 showed different results concerning perception and satisfaction of received information than the other questionnaires. All results were used for recommendations for the future study.
| Item Type: | Thesis (Thesis) |
|---|---|
| Supervisor name: | Walenkamp, dr. A. |
| Faculty: | Medical Sciences |
| Date Deposited: | 25 Jun 2020 10:54 |
| Last Modified: | 25 Jun 2020 10:54 |
| URI: | https://umcg.studenttheses.ub.rug.nl/id/eprint/1484 |
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