Patients and caregivers' unmet information needs in the field of patient education: results from an Italian multicenter exploratory survey

Ivana Truccolo, Mauro Mazzocut, Chiara Cipolat Mis, Ettore Bidoli, Paola Zotti, Silvia Flora, Luigina Mei, Mauro Apostolico, Christina Drace, Valentina Ravaioli, Alice Conficconi, Simone Cocchi, Elena Cervi, Laura Gangeri, Paolo De Paoli

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Abstract

Patient education and empowerment (PEE) is aimed at improving competence of patients during their clinical path and enabling healthcare providers with specific communication strategies. We investigated the interest of Italian Cancer Research & Care Centers (CRCI) users (patients and caregivers) in being involved in PEE activities. An anonymous questionnaire addressed to users was distributed between June 2013 and February 2014. The questionnaire gathered information on the following: health-related topics; 13 different PEE initiatives/modalities of learning already active at CRCI; personal demographic data; the willingness to be more involved in the organization of health services provided and in which context; and five preferred info-educational activities. Frequency distribution and chi-square analysis were computed. Statistical significance (p value) was set at < 0.05. A total of 875 (29%) users responded to the 3000 distributed questionnaires. The first three priorities of interest were "early diagnosis" (18%), "prevention" (17%), and "diagnosis explanation" (13%). The first three priorities on informational activity were as follows: "classes on cancer-related topics with healthcare professionals" (28%); "cancer information service" (22%); "drug information point" (7%). Forty-nine percent of the respondents stated that they would like to be involved in the organization of PEE activities, particularly caregivers and users older than 55 years of age. The preferred educational activities were "classes on cancer-related topics with healthcare professionals" and "cancer information service" on a face-to-face modality. Patients were more interested than caregivers in "prevention." The extension of PEE programs to all CRCI users into routine care will be the next step of the present research.

Original languageEnglish
JournalSupportive Care in Cancer
DOIs
Publication statusE-pub ahead of print - Sep 6 2018

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Patient Participation
Patient Education
Caregivers
Information Services
Neoplasms
Organizations
Delivery of Health Care
Education
Problem-Based Learning
Critical Pathways
Chi-Square Distribution
Research
Health Personnel
Mental Competency
Health Services
Early Diagnosis
Communication
Demography
Surveys and Questionnaires
Health

Cite this

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title = "Patients and caregivers' unmet information needs in the field of patient education: results from an Italian multicenter exploratory survey",
abstract = "Patient education and empowerment (PEE) is aimed at improving competence of patients during their clinical path and enabling healthcare providers with specific communication strategies. We investigated the interest of Italian Cancer Research & Care Centers (CRCI) users (patients and caregivers) in being involved in PEE activities. An anonymous questionnaire addressed to users was distributed between June 2013 and February 2014. The questionnaire gathered information on the following: health-related topics; 13 different PEE initiatives/modalities of learning already active at CRCI; personal demographic data; the willingness to be more involved in the organization of health services provided and in which context; and five preferred info-educational activities. Frequency distribution and chi-square analysis were computed. Statistical significance (p value) was set at < 0.05. A total of 875 (29{\%}) users responded to the 3000 distributed questionnaires. The first three priorities of interest were {"}early diagnosis{"} (18{\%}), {"}prevention{"} (17{\%}), and {"}diagnosis explanation{"} (13{\%}). The first three priorities on informational activity were as follows: {"}classes on cancer-related topics with healthcare professionals{"} (28{\%}); {"}cancer information service{"} (22{\%}); {"}drug information point{"} (7{\%}). Forty-nine percent of the respondents stated that they would like to be involved in the organization of PEE activities, particularly caregivers and users older than 55 years of age. The preferred educational activities were {"}classes on cancer-related topics with healthcare professionals{"} and {"}cancer information service{"} on a face-to-face modality. Patients were more interested than caregivers in {"}prevention.{"} The extension of PEE programs to all CRCI users into routine care will be the next step of the present research.",
author = "Ivana Truccolo and Mauro Mazzocut and {Cipolat Mis}, Chiara and Ettore Bidoli and Paola Zotti and Silvia Flora and Luigina Mei and Mauro Apostolico and Christina Drace and Valentina Ravaioli and Alice Conficconi and Simone Cocchi and Elena Cervi and Laura Gangeri and {De Paoli}, Paolo",
year = "2018",
month = "9",
day = "6",
doi = "10.1007/s00520-018-4439-z",
language = "English",
journal = "Supportive Care in Cancer",
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TY - JOUR

T1 - Patients and caregivers' unmet information needs in the field of patient education

T2 - results from an Italian multicenter exploratory survey

AU - Truccolo, Ivana

AU - Mazzocut, Mauro

AU - Cipolat Mis, Chiara

AU - Bidoli, Ettore

AU - Zotti, Paola

AU - Flora, Silvia

AU - Mei, Luigina

AU - Apostolico, Mauro

AU - Drace, Christina

AU - Ravaioli, Valentina

AU - Conficconi, Alice

AU - Cocchi, Simone

AU - Cervi, Elena

AU - Gangeri, Laura

AU - De Paoli, Paolo

PY - 2018/9/6

Y1 - 2018/9/6

N2 - Patient education and empowerment (PEE) is aimed at improving competence of patients during their clinical path and enabling healthcare providers with specific communication strategies. We investigated the interest of Italian Cancer Research & Care Centers (CRCI) users (patients and caregivers) in being involved in PEE activities. An anonymous questionnaire addressed to users was distributed between June 2013 and February 2014. The questionnaire gathered information on the following: health-related topics; 13 different PEE initiatives/modalities of learning already active at CRCI; personal demographic data; the willingness to be more involved in the organization of health services provided and in which context; and five preferred info-educational activities. Frequency distribution and chi-square analysis were computed. Statistical significance (p value) was set at < 0.05. A total of 875 (29%) users responded to the 3000 distributed questionnaires. The first three priorities of interest were "early diagnosis" (18%), "prevention" (17%), and "diagnosis explanation" (13%). The first three priorities on informational activity were as follows: "classes on cancer-related topics with healthcare professionals" (28%); "cancer information service" (22%); "drug information point" (7%). Forty-nine percent of the respondents stated that they would like to be involved in the organization of PEE activities, particularly caregivers and users older than 55 years of age. The preferred educational activities were "classes on cancer-related topics with healthcare professionals" and "cancer information service" on a face-to-face modality. Patients were more interested than caregivers in "prevention." The extension of PEE programs to all CRCI users into routine care will be the next step of the present research.

AB - Patient education and empowerment (PEE) is aimed at improving competence of patients during their clinical path and enabling healthcare providers with specific communication strategies. We investigated the interest of Italian Cancer Research & Care Centers (CRCI) users (patients and caregivers) in being involved in PEE activities. An anonymous questionnaire addressed to users was distributed between June 2013 and February 2014. The questionnaire gathered information on the following: health-related topics; 13 different PEE initiatives/modalities of learning already active at CRCI; personal demographic data; the willingness to be more involved in the organization of health services provided and in which context; and five preferred info-educational activities. Frequency distribution and chi-square analysis were computed. Statistical significance (p value) was set at < 0.05. A total of 875 (29%) users responded to the 3000 distributed questionnaires. The first three priorities of interest were "early diagnosis" (18%), "prevention" (17%), and "diagnosis explanation" (13%). The first three priorities on informational activity were as follows: "classes on cancer-related topics with healthcare professionals" (28%); "cancer information service" (22%); "drug information point" (7%). Forty-nine percent of the respondents stated that they would like to be involved in the organization of PEE activities, particularly caregivers and users older than 55 years of age. The preferred educational activities were "classes on cancer-related topics with healthcare professionals" and "cancer information service" on a face-to-face modality. Patients were more interested than caregivers in "prevention." The extension of PEE programs to all CRCI users into routine care will be the next step of the present research.

U2 - 10.1007/s00520-018-4439-z

DO - 10.1007/s00520-018-4439-z

M3 - Article

JO - Supportive Care in Cancer

JF - Supportive Care in Cancer

SN - 0941-4355

ER -