Loading…
Unmet information needs and impact of cancer in (long-term) thyroid cancer survivors: results of the PROFILES registry
Objective The objective of this study was to provide insight into the following: (a) the perceived level of, satisfaction with, and helpfulness of received information and unmet information needs among thyroid cancer (TC) survivors and (b) the relation between unmet information needs and impact of c...
Saved in:
| Published in: | Psycho-oncology (Chichester, England) England), 2014-08, Vol.23 (8), p.946-952 |
|---|---|
| Main Authors: | , , , , , , , |
| Format: | Article |
| Language: | English |
| Subjects: | |
| Citations: | Items that cite this one |
| Online Access: | Get full text |
| Tags: |
Add Tag
No Tags, Be the first to tag this record!
|
| cited_by | cdi_FETCH-LOGICAL-c4574-3b3657b28b7a9d2c6a67d6f0b9d95895596b7e1b087a49dc7cb2af8928747c7b3 |
|---|---|
| cites | |
| container_end_page | 952 |
| container_issue | 8 |
| container_start_page | 946 |
| container_title | Psycho-oncology (Chichester, England) |
| container_volume | 23 |
| creator | Husson, O. Mols, F. Oranje, W. A. Haak, H. R. Nieuwlaat, W. A. Netea-Maier, R. T. Smit, J. W. A. van de Poll-Franse, L. V. |
| description | Objective
The objective of this study was to provide insight into the following: (a) the perceived level of, satisfaction with, and helpfulness of received information and unmet information needs among thyroid cancer (TC) survivors and (b) the relation between unmet information needs and impact of cancer (IOC).
Methods
All patients diagnosed with TC between 1990 and 2008, as registered in the Eindhoven Cancer Registry, received a survey on information provision (European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Information module) and IOC.
Results
Thyroid cancer survivors (n = 306; response rate = 86%) indicated to receive no or only a little information about different aspects of their disease (27–86%), medical tests (20–27%), treatment (21–90%), and aftercare (86–91%). Almost half of the survivors (47%) were not at all or a little satisfied with the amount of information received; 31% found the received information not or a little helpful; a third of the patients (34%) indicated that they wanted to receive more information (defined as unmet needs). TC survivors with unmet informational needs scored significantly higher on both the positive (mean 3.2 vs. 2.9) and negative IOC scale (mean 2.5 vs. 2.2) compared with survivors without unmet needs (p |
| doi_str_mv | 10.1002/pon.3514 |
| format | article |
| fullrecord | <record><control><sourceid>proquest_pubme</sourceid><recordid>TN_cdi_proquest_miscellaneous_1609510931</recordid><sourceformat>XML</sourceformat><sourcesystem>PC</sourcesystem><sourcerecordid>3391829601</sourcerecordid><originalsourceid>FETCH-LOGICAL-c4574-3b3657b28b7a9d2c6a67d6f0b9d95895596b7e1b087a49dc7cb2af8928747c7b3</originalsourceid><addsrcrecordid>eNqF0U1vFSEUBmBiNLZWE3-BIXFTF1Nhho_BXXvT1sab3qbauCTAMC11Bq7AXHv_fZn0w8SNq3PCeSDhPQC8x-gAI1R_Xgd_0FBMXoBdjISoMMP45dxTXomaiB3wJqVbhAoW7DXYqQnDQiC-CzZXfrQZOt-HOKrsgofe2i5B5TvoxrUyGYYeGuWNjYXB_SH46yrbOH6C-WYbg-uepmmKG7cJMX2B0aZpyGm-mm8svLhcnZwtj7-X82uXcty-Ba96NST77rHugauT4x-Lr9VydXq2OFxWhlBOqkY3jHJdt5or0dWGKcY71iMtOkFbQalgmlusUcsVEZ3hRteqb0XdcsIN180e2H94dx3D78mmLEeXjB0G5W2YksQMCVoia_D_KSUCC8YxLfTjP_Q2TNGXjxRFUVuLhvCiPjyqSY-2k-voRhW38in8AqoH8McNdvs8x0jOS5VlqXJeqrxYnc_1ry8R2rtnr-IvyXjDqfx5fiqPmm-LI3y5KM09EvihZA</addsrcrecordid><sourcetype>Aggregation Database</sourcetype><iscdi>true</iscdi><recordtype>article</recordtype><pqid>1550829347</pqid></control><display><type>article</type><title>Unmet information needs and impact of cancer in (long-term) thyroid cancer survivors: results of the PROFILES registry</title><source>Applied Social Sciences Index & Abstracts (ASSIA)</source><source>Wiley-Blackwell Read & Publish Collection</source><creator>Husson, O. ; Mols, F. ; Oranje, W. A. ; Haak, H. R. ; Nieuwlaat, W. A. ; Netea-Maier, R. T. ; Smit, J. W. A. ; van de Poll-Franse, L. V.</creator><creatorcontrib>Husson, O. ; Mols, F. ; Oranje, W. A. ; Haak, H. R. ; Nieuwlaat, W. A. ; Netea-Maier, R. T. ; Smit, J. W. A. ; van de Poll-Franse, L. V.</creatorcontrib><description>Objective
The objective of this study was to provide insight into the following: (a) the perceived level of, satisfaction with, and helpfulness of received information and unmet information needs among thyroid cancer (TC) survivors and (b) the relation between unmet information needs and impact of cancer (IOC).
Methods
All patients diagnosed with TC between 1990 and 2008, as registered in the Eindhoven Cancer Registry, received a survey on information provision (European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Information module) and IOC.
Results
Thyroid cancer survivors (n = 306; response rate = 86%) indicated to receive no or only a little information about different aspects of their disease (27–86%), medical tests (20–27%), treatment (21–90%), and aftercare (86–91%). Almost half of the survivors (47%) were not at all or a little satisfied with the amount of information received; 31% found the received information not or a little helpful; a third of the patients (34%) indicated that they wanted to receive more information (defined as unmet needs). TC survivors with unmet informational needs scored significantly higher on both the positive (mean 3.2 vs. 2.9) and negative IOC scale (mean 2.5 vs. 2.2) compared with survivors without unmet needs (p < 0.01). In multivariate linear regression analyses, unmet information needs were positively associated with all positive IOC scales except positive self‐evaluation (betas ranging from 0.16 to 0.24; p < 0.05), and all negative IOC scales except for appearance concerns (betas ranging from 0.12 to 0.19; p < 0.05).
Conclusion
Thyroid cancer survivors experienced several areas of information provision as insufficient, suggesting room for improvement. Unmet information needs among TC survivors are associated with both positive and negative impacts of cancer. Copyright © 2014 John Wiley & Sons, Ltd.</description><identifier>ISSN: 1057-9249</identifier><identifier>EISSN: 1099-1611</identifier><identifier>DOI: 10.1002/pon.3514</identifier><identifier>PMID: 24619907</identifier><identifier>CODEN: POJCEE</identifier><language>eng</language><publisher>England: Blackwell Publishing Ltd</publisher><subject>Adenocarcinoma, Follicular - psychology ; Adenocarcinoma, Follicular - therapy ; Adenoma, Oxyphilic ; Adult ; Aftercare ; Aged ; Carcinoma - psychology ; Carcinoma - therapy ; Carcinoma, Neuroendocrine ; Carcinoma, Papillary ; coping ; Female ; Health Services Needs and Demand ; Humans ; impact of cancer ; Information ; information provision ; Linear Models ; Male ; Middle Aged ; Multivariate Analysis ; needs ; Patient Education as Topic ; Patient Satisfaction ; Quality of Health Care ; Registries ; Survivor ; Survivors - psychology ; Thyroid cancer ; Thyroid Neoplasms - psychology ; Thyroid Neoplasms - therapy</subject><ispartof>Psycho-oncology (Chichester, England), 2014-08, Vol.23 (8), p.946-952</ispartof><rights>Copyright © 2014 John Wiley & Sons, Ltd.</rights><rights>Copyright Wiley Subscription Services, Inc. Aug 2014</rights><lds50>peer_reviewed</lds50><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c4574-3b3657b28b7a9d2c6a67d6f0b9d95895596b7e1b087a49dc7cb2af8928747c7b3</citedby></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><link.rule.ids>314,780,784,27923,27924,30998</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/24619907$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Husson, O.</creatorcontrib><creatorcontrib>Mols, F.</creatorcontrib><creatorcontrib>Oranje, W. A.</creatorcontrib><creatorcontrib>Haak, H. R.</creatorcontrib><creatorcontrib>Nieuwlaat, W. A.</creatorcontrib><creatorcontrib>Netea-Maier, R. T.</creatorcontrib><creatorcontrib>Smit, J. W. A.</creatorcontrib><creatorcontrib>van de Poll-Franse, L. V.</creatorcontrib><title>Unmet information needs and impact of cancer in (long-term) thyroid cancer survivors: results of the PROFILES registry</title><title>Psycho-oncology (Chichester, England)</title><addtitle>Psycho-Oncology</addtitle><description>Objective
The objective of this study was to provide insight into the following: (a) the perceived level of, satisfaction with, and helpfulness of received information and unmet information needs among thyroid cancer (TC) survivors and (b) the relation between unmet information needs and impact of cancer (IOC).
Methods
All patients diagnosed with TC between 1990 and 2008, as registered in the Eindhoven Cancer Registry, received a survey on information provision (European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Information module) and IOC.
Results
Thyroid cancer survivors (n = 306; response rate = 86%) indicated to receive no or only a little information about different aspects of their disease (27–86%), medical tests (20–27%), treatment (21–90%), and aftercare (86–91%). Almost half of the survivors (47%) were not at all or a little satisfied with the amount of information received; 31% found the received information not or a little helpful; a third of the patients (34%) indicated that they wanted to receive more information (defined as unmet needs). TC survivors with unmet informational needs scored significantly higher on both the positive (mean 3.2 vs. 2.9) and negative IOC scale (mean 2.5 vs. 2.2) compared with survivors without unmet needs (p < 0.01). In multivariate linear regression analyses, unmet information needs were positively associated with all positive IOC scales except positive self‐evaluation (betas ranging from 0.16 to 0.24; p < 0.05), and all negative IOC scales except for appearance concerns (betas ranging from 0.12 to 0.19; p < 0.05).
Conclusion
Thyroid cancer survivors experienced several areas of information provision as insufficient, suggesting room for improvement. Unmet information needs among TC survivors are associated with both positive and negative impacts of cancer. Copyright © 2014 John Wiley & Sons, Ltd.</description><subject>Adenocarcinoma, Follicular - psychology</subject><subject>Adenocarcinoma, Follicular - therapy</subject><subject>Adenoma, Oxyphilic</subject><subject>Adult</subject><subject>Aftercare</subject><subject>Aged</subject><subject>Carcinoma - psychology</subject><subject>Carcinoma - therapy</subject><subject>Carcinoma, Neuroendocrine</subject><subject>Carcinoma, Papillary</subject><subject>coping</subject><subject>Female</subject><subject>Health Services Needs and Demand</subject><subject>Humans</subject><subject>impact of cancer</subject><subject>Information</subject><subject>information provision</subject><subject>Linear Models</subject><subject>Male</subject><subject>Middle Aged</subject><subject>Multivariate Analysis</subject><subject>needs</subject><subject>Patient Education as Topic</subject><subject>Patient Satisfaction</subject><subject>Quality of Health Care</subject><subject>Registries</subject><subject>Survivor</subject><subject>Survivors - psychology</subject><subject>Thyroid cancer</subject><subject>Thyroid Neoplasms - psychology</subject><subject>Thyroid Neoplasms - therapy</subject><issn>1057-9249</issn><issn>1099-1611</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2014</creationdate><recordtype>article</recordtype><sourceid>7QJ</sourceid><recordid>eNqF0U1vFSEUBmBiNLZWE3-BIXFTF1Nhho_BXXvT1sab3qbauCTAMC11Bq7AXHv_fZn0w8SNq3PCeSDhPQC8x-gAI1R_Xgd_0FBMXoBdjISoMMP45dxTXomaiB3wJqVbhAoW7DXYqQnDQiC-CzZXfrQZOt-HOKrsgofe2i5B5TvoxrUyGYYeGuWNjYXB_SH46yrbOH6C-WYbg-uepmmKG7cJMX2B0aZpyGm-mm8svLhcnZwtj7-X82uXcty-Ba96NST77rHugauT4x-Lr9VydXq2OFxWhlBOqkY3jHJdt5or0dWGKcY71iMtOkFbQalgmlusUcsVEZ3hRteqb0XdcsIN180e2H94dx3D78mmLEeXjB0G5W2YksQMCVoia_D_KSUCC8YxLfTjP_Q2TNGXjxRFUVuLhvCiPjyqSY-2k-voRhW38in8AqoH8McNdvs8x0jOS5VlqXJeqrxYnc_1ry8R2rtnr-IvyXjDqfx5fiqPmm-LI3y5KM09EvihZA</recordid><startdate>201408</startdate><enddate>201408</enddate><creator>Husson, O.</creator><creator>Mols, F.</creator><creator>Oranje, W. A.</creator><creator>Haak, H. R.</creator><creator>Nieuwlaat, W. A.</creator><creator>Netea-Maier, R. T.</creator><creator>Smit, J. W. A.</creator><creator>van de Poll-Franse, L. V.</creator><general>Blackwell Publishing Ltd</general><general>Wiley Subscription Services, Inc</general><scope>BSCLL</scope><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>7QJ</scope><scope>ASE</scope><scope>FPQ</scope><scope>K6X</scope><scope>K9.</scope><scope>NAPCQ</scope><scope>7X8</scope></search><sort><creationdate>201408</creationdate><title>Unmet information needs and impact of cancer in (long-term) thyroid cancer survivors: results of the PROFILES registry</title><author>Husson, O. ; Mols, F. ; Oranje, W. A. ; Haak, H. R. ; Nieuwlaat, W. A. ; Netea-Maier, R. T. ; Smit, J. W. A. ; van de Poll-Franse, L. V.</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c4574-3b3657b28b7a9d2c6a67d6f0b9d95895596b7e1b087a49dc7cb2af8928747c7b3</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2014</creationdate><topic>Adenocarcinoma, Follicular - psychology</topic><topic>Adenocarcinoma, Follicular - therapy</topic><topic>Adenoma, Oxyphilic</topic><topic>Adult</topic><topic>Aftercare</topic><topic>Aged</topic><topic>Carcinoma - psychology</topic><topic>Carcinoma - therapy</topic><topic>Carcinoma, Neuroendocrine</topic><topic>Carcinoma, Papillary</topic><topic>coping</topic><topic>Female</topic><topic>Health Services Needs and Demand</topic><topic>Humans</topic><topic>impact of cancer</topic><topic>Information</topic><topic>information provision</topic><topic>Linear Models</topic><topic>Male</topic><topic>Middle Aged</topic><topic>Multivariate Analysis</topic><topic>needs</topic><topic>Patient Education as Topic</topic><topic>Patient Satisfaction</topic><topic>Quality of Health Care</topic><topic>Registries</topic><topic>Survivor</topic><topic>Survivors - psychology</topic><topic>Thyroid cancer</topic><topic>Thyroid Neoplasms - psychology</topic><topic>Thyroid Neoplasms - therapy</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Husson, O.</creatorcontrib><creatorcontrib>Mols, F.</creatorcontrib><creatorcontrib>Oranje, W. A.</creatorcontrib><creatorcontrib>Haak, H. R.</creatorcontrib><creatorcontrib>Nieuwlaat, W. A.</creatorcontrib><creatorcontrib>Netea-Maier, R. T.</creatorcontrib><creatorcontrib>Smit, J. W. A.</creatorcontrib><creatorcontrib>van de Poll-Franse, L. V.</creatorcontrib><collection>Istex</collection><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>Applied Social Sciences Index & Abstracts (ASSIA)</collection><collection>British Nursing Index</collection><collection>British Nursing Index (BNI) (1985 to Present)</collection><collection>British Nursing Index</collection><collection>ProQuest Health & Medical Complete (Alumni)</collection><collection>Nursing & Allied Health Premium</collection><collection>MEDLINE - Academic</collection><jtitle>Psycho-oncology (Chichester, England)</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Husson, O.</au><au>Mols, F.</au><au>Oranje, W. A.</au><au>Haak, H. R.</au><au>Nieuwlaat, W. A.</au><au>Netea-Maier, R. T.</au><au>Smit, J. W. A.</au><au>van de Poll-Franse, L. V.</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Unmet information needs and impact of cancer in (long-term) thyroid cancer survivors: results of the PROFILES registry</atitle><jtitle>Psycho-oncology (Chichester, England)</jtitle><addtitle>Psycho-Oncology</addtitle><date>2014-08</date><risdate>2014</risdate><volume>23</volume><issue>8</issue><spage>946</spage><epage>952</epage><pages>946-952</pages><issn>1057-9249</issn><eissn>1099-1611</eissn><coden>POJCEE</coden><abstract>Objective
The objective of this study was to provide insight into the following: (a) the perceived level of, satisfaction with, and helpfulness of received information and unmet information needs among thyroid cancer (TC) survivors and (b) the relation between unmet information needs and impact of cancer (IOC).
Methods
All patients diagnosed with TC between 1990 and 2008, as registered in the Eindhoven Cancer Registry, received a survey on information provision (European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Information module) and IOC.
Results
Thyroid cancer survivors (n = 306; response rate = 86%) indicated to receive no or only a little information about different aspects of their disease (27–86%), medical tests (20–27%), treatment (21–90%), and aftercare (86–91%). Almost half of the survivors (47%) were not at all or a little satisfied with the amount of information received; 31% found the received information not or a little helpful; a third of the patients (34%) indicated that they wanted to receive more information (defined as unmet needs). TC survivors with unmet informational needs scored significantly higher on both the positive (mean 3.2 vs. 2.9) and negative IOC scale (mean 2.5 vs. 2.2) compared with survivors without unmet needs (p < 0.01). In multivariate linear regression analyses, unmet information needs were positively associated with all positive IOC scales except positive self‐evaluation (betas ranging from 0.16 to 0.24; p < 0.05), and all negative IOC scales except for appearance concerns (betas ranging from 0.12 to 0.19; p < 0.05).
Conclusion
Thyroid cancer survivors experienced several areas of information provision as insufficient, suggesting room for improvement. Unmet information needs among TC survivors are associated with both positive and negative impacts of cancer. Copyright © 2014 John Wiley & Sons, Ltd.</abstract><cop>England</cop><pub>Blackwell Publishing Ltd</pub><pmid>24619907</pmid><doi>10.1002/pon.3514</doi><tpages>7</tpages></addata></record> |
| fulltext | fulltext |
| identifier | ISSN: 1057-9249 |
| ispartof | Psycho-oncology (Chichester, England), 2014-08, Vol.23 (8), p.946-952 |
| issn | 1057-9249 1099-1611 |
| language | eng |
| recordid | cdi_proquest_miscellaneous_1609510931 |
| source | Applied Social Sciences Index & Abstracts (ASSIA); Wiley-Blackwell Read & Publish Collection |
| subjects | Adenocarcinoma, Follicular - psychology Adenocarcinoma, Follicular - therapy Adenoma, Oxyphilic Adult Aftercare Aged Carcinoma - psychology Carcinoma - therapy Carcinoma, Neuroendocrine Carcinoma, Papillary coping Female Health Services Needs and Demand Humans impact of cancer Information information provision Linear Models Male Middle Aged Multivariate Analysis needs Patient Education as Topic Patient Satisfaction Quality of Health Care Registries Survivor Survivors - psychology Thyroid cancer Thyroid Neoplasms - psychology Thyroid Neoplasms - therapy |
| title | Unmet information needs and impact of cancer in (long-term) thyroid cancer survivors: results of the PROFILES registry |
| url | http://sfxeu10.hosted.exlibrisgroup.com/loughborough?ctx_ver=Z39.88-2004&ctx_enc=info:ofi/enc:UTF-8&ctx_tim=2025-01-12T02%3A51%3A38IST&url_ver=Z39.88-2004&url_ctx_fmt=infofi/fmt:kev:mtx:ctx&rfr_id=info:sid/primo.exlibrisgroup.com:primo3-Article-proquest_pubme&rft_val_fmt=info:ofi/fmt:kev:mtx:journal&rft.genre=article&rft.atitle=Unmet%20information%20needs%20and%20impact%20of%20cancer%20in%20(long-term)%20thyroid%20cancer%20survivors:%20results%20of%20the%20PROFILES%20registry&rft.jtitle=Psycho-oncology%20(Chichester,%20England)&rft.au=Husson,%20O.&rft.date=2014-08&rft.volume=23&rft.issue=8&rft.spage=946&rft.epage=952&rft.pages=946-952&rft.issn=1057-9249&rft.eissn=1099-1611&rft.coden=POJCEE&rft_id=info:doi/10.1002/pon.3514&rft_dat=%3Cproquest_pubme%3E3391829601%3C/proquest_pubme%3E%3Cgrp_id%3Ecdi_FETCH-LOGICAL-c4574-3b3657b28b7a9d2c6a67d6f0b9d95895596b7e1b087a49dc7cb2af8928747c7b3%3C/grp_id%3E%3Coa%3E%3C/oa%3E%3Curl%3E%3C/url%3E&rft_id=info:oai/&rft_pqid=1550829347&rft_id=info:pmid/24619907&rfr_iscdi=true |