A study into the information needs of patients with urological cancers and the development of layered patient information

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Abstract

Patients are nowadays increasingly responsible for their own care process. However, it has been shown that patients experience difficulties in managing their own disease. In order to empower patients, they need to have sufficient knowledge on the care process. Patients who are well informed are more confident and autonomous. Nevertheless, insights in what information patients actually need in order to become empowered, is limited. Therefore the first aim of this study was to determine the information needs of cancer patients required to manage their own disease. We focused on urological cancers (prostate, bladder and kidney). The second aim was to create patient information materials that would meet these needs.

A mixed method study was conducted in collaboration with the European Association of Urology (EAU) and the patient organizations ProstaatKankerStichting and Leven met Blaas of Nierkanker. First, 40 semi-structured interviews with 22 patients and 18 healthcare professionals of multiple institutions were conducted to determine the information needs of patients. Next, an online survey completed by 270 patients was performed to determine whether the findings from the interviews about information needs were supported by the population. Subsequently within four co-design groups (prostate, (non)invasive-bladder and kidney cancer), each comprising 2-3 patients, 2 nurses and 2 urologists, the results were discussed and ideas for new information materials were developed.

Results showed that with regard to existing information, patients have difficulties with extracting reliable and relevant information from the variety of information sources. Information was only available on specific steps within the clinical care pathway and often not targeted to their own situation. In order to feel more in control, patients would like to get a better overview of the complete clinical care pathway. Specific information needs differed per patient and also in time, depending on their specific situation, background and coping strategy. Information should be attuned to the specific needs of patients by stratifying the information: (1) per phase of the disease process, (2) the extent of detail and (3) the way the information is shown visually/textual and online/on paper. Information from clinical cancer guidelines can be used as a basis for providing reliable information on which consensus is agreed on a national level. In order to make sure the information is attuned to patients specific situation, the information should become a directive tool in the patient-physician dialogue.

In conclusion, currently available patient information materials do not meet the needs of patients with urological cancers. In order for patients to become empowered more layered and stratified information for different patient types, disease stages, level of detail and visual presentation, is needed. At present the required patient information is being developed under coordination of the EAU. These results could be used as a blueprint to create patient materials for other types of cancers.
Original languageEnglish
Publication statusPublished - Nov 2017

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Urologic Neoplasms
Critical Pathways
Kidney Neoplasms
Urinary Bladder Neoplasms

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title = "A study into the information needs of patients with urological cancers and the development of layered patient information",
abstract = "Patients are nowadays increasingly responsible for their own care process. However, it has been shown that patients experience difficulties in managing their own disease. In order to empower patients, they need to have sufficient knowledge on the care process. Patients who are well informed are more confident and autonomous. Nevertheless, insights in what information patients actually need in order to become empowered, is limited. Therefore the first aim of this study was to determine the information needs of cancer patients required to manage their own disease. We focused on urological cancers (prostate, bladder and kidney). The second aim was to create patient information materials that would meet these needs. A mixed method study was conducted in collaboration with the European Association of Urology (EAU) and the patient organizations ProstaatKankerStichting and Leven met Blaas of Nierkanker. First, 40 semi-structured interviews with 22 patients and 18 healthcare professionals of multiple institutions were conducted to determine the information needs of patients. Next, an online survey completed by 270 patients was performed to determine whether the findings from the interviews about information needs were supported by the population. Subsequently within four co-design groups (prostate, (non)invasive-bladder and kidney cancer), each comprising 2-3 patients, 2 nurses and 2 urologists, the results were discussed and ideas for new information materials were developed. Results showed that with regard to existing information, patients have difficulties with extracting reliable and relevant information from the variety of information sources. Information was only available on specific steps within the clinical care pathway and often not targeted to their own situation. In order to feel more in control, patients would like to get a better overview of the complete clinical care pathway. Specific information needs differed per patient and also in time, depending on their specific situation, background and coping strategy. Information should be attuned to the specific needs of patients by stratifying the information: (1) per phase of the disease process, (2) the extent of detail and (3) the way the information is shown visually/textual and online/on paper. Information from clinical cancer guidelines can be used as a basis for providing reliable information on which consensus is agreed on a national level. In order to make sure the information is attuned to patients specific situation, the information should become a directive tool in the patient-physician dialogue. In conclusion, currently available patient information materials do not meet the needs of patients with urological cancers. In order for patients to become empowered more layered and stratified information for different patient types, disease stages, level of detail and visual presentation, is needed. At present the required patient information is being developed under coordination of the EAU. These results could be used as a blueprint to create patient materials for other types of cancers.",
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