Loading…
Longitudinal prognostic communication needs of adolescents and young adults with cancer
Background Although the majority of adolescent and young adult (AYA) patients with cancer desire prognostic information, to the authors' knowledge little is known regarding how preferences for prognostic communication change over time. Methods The current study was a longitudinal, prospective,...
Saved in:
| Published in: | Cancer 2020-01, Vol.126 (2), p.400-407 |
|---|---|
| Main Authors: | , , , |
| Format: | Article |
| Language: | English |
| Subjects: | |
| Citations: | Items that this one cites 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-c4483-dd8bb51bd379c48632a42f6a8d30553bb3d86f9b2b53ea5b6ee824e0a6067a913 |
|---|---|
| cites | cdi_FETCH-LOGICAL-c4483-dd8bb51bd379c48632a42f6a8d30553bb3d86f9b2b53ea5b6ee824e0a6067a913 |
| container_end_page | 407 |
| container_issue | 2 |
| container_start_page | 400 |
| container_title | Cancer |
| container_volume | 126 |
| creator | Sisk, Bryan A. Fasciano, Karen Block, Susan D. Mack, Jennifer W. |
| description | Background
Although the majority of adolescent and young adult (AYA) patients with cancer desire prognostic information, to the authors' knowledge little is known regarding how preferences for prognostic communication change over time.
Methods
The current study was a longitudinal, prospective, questionnaire‐based cohort study of 136 AYA patients with cancer who were aged 15 to 29 years and who were treated at a large academic cancer center. Previously published scales were administered at the time of diagnosis and at 4 months and 12 months after diagnosis.
Results
The majority of patients reported that prognostic information was very/extremely important at the time of diagnosis (85%), at 4 months (96%; P = .002 compared with baseline), and at 12 months (81%; P = .02 compared with baseline). Few patients reported that prognostic knowledge was very/extremely upsetting at baseline (7%), at 4 months (9%; P = .44 compared with baseline), or at 12 months (11%; P = .27 compared with baseline). The majority of patients were satisfied with the amount of prognostic information received throughout the year after diagnosis (81%, 86%, and 81%, respectively, at the time of diagnosis, at 4 months, and at 12 months). This percentage did not change between the time of diagnosis and 4 months (P = .16) or between diagnosis and 12 months (P = 1.00). In multivariable analysis, satisfaction with prognostic information received was associated with patient report of high‐quality communication (odds ratio, 2.67; 95% CI, 1.38‐5.17) and having a >75% chance of cure (odds ratio, 2.39; 95% CI, 1.24‐4.61) after adjustment for patient age category, race/ethnicity, and time point of administration.
Conclusions
The majority of AYA patients with cancer were satisfied with prognostic disclosure over time, but a sizeable minority wanted additional information. Desire for prognostic information increased over time. Clinicians should return to prognostic discussions over time to support AYA patients with cancer.
The majority of adolescent and young adult (AYA) patients with cancer are found to highly value prognostic information throughout the year after diagnosis. In the current study, although many AYA patients appear to be satisfied with the prognostic information received, a sizeable minority indicate unmet needs over time. |
| doi_str_mv | 10.1002/cncr.32533 |
| format | article |
| fullrecord | <record><control><sourceid>proquest_pubme</sourceid><recordid>TN_cdi_pubmedcentral_primary_oai_pubmedcentral_nih_gov_7010331</recordid><sourceformat>XML</sourceformat><sourcesystem>PC</sourcesystem><sourcerecordid>2299769792</sourcerecordid><originalsourceid>FETCH-LOGICAL-c4483-dd8bb51bd379c48632a42f6a8d30553bb3d86f9b2b53ea5b6ee824e0a6067a913</originalsourceid><addsrcrecordid>eNp9kV1rFDEUhoNY2m3tjT9ABrwRYdp8T3JTkEWrsLQgit6FfM02ZSZZkxnL_vtm3VpaL7wKOXl4eE9eAF4jeIYgxOc22nxGMCPkBVggKLsWIopfggWEULSMkp9H4LiU23rtKnUIjghiXDBBF-DHKsV1mGYXoh6aTU7rmMoUbGPTOM4xWD2FFJvovStN6hvt0uCL9XEqjY6u2aY5rut0HurgLkw3jdXR-vwKHPR6KP704TwB3z99_Lb83K6uL78sP6xaS6kgrXPCGIaMI520VHCCNcU918IRyBgxhjjBe2mwYcRrZrj3AlMPNYe80xKRE3Cx925mM3q3C5b1oDY5jDpvVdJBPX-J4Uat02_VQQQJ2QnePQhy-jX7Mqkx1P2GQUef5qIwlrLjspO4om__QW_TnOu_VYoQyqXgDFbq_Z6yOZWSff8YBkG160vt-lJ_-qrwm6fxH9G_BVUA7YG7MPjtf1RqebX8upfeAwlEoi8</addsrcrecordid><sourcetype>Open Access Repository</sourcetype><iscdi>true</iscdi><recordtype>article</recordtype><pqid>2334698650</pqid></control><display><type>article</type><title>Longitudinal prognostic communication needs of adolescents and young adults with cancer</title><source>Wiley</source><source>EZB Electronic Journals Library</source><creator>Sisk, Bryan A. ; Fasciano, Karen ; Block, Susan D. ; Mack, Jennifer W.</creator><creatorcontrib>Sisk, Bryan A. ; Fasciano, Karen ; Block, Susan D. ; Mack, Jennifer W.</creatorcontrib><description>Background
Although the majority of adolescent and young adult (AYA) patients with cancer desire prognostic information, to the authors' knowledge little is known regarding how preferences for prognostic communication change over time.
Methods
The current study was a longitudinal, prospective, questionnaire‐based cohort study of 136 AYA patients with cancer who were aged 15 to 29 years and who were treated at a large academic cancer center. Previously published scales were administered at the time of diagnosis and at 4 months and 12 months after diagnosis.
Results
The majority of patients reported that prognostic information was very/extremely important at the time of diagnosis (85%), at 4 months (96%; P = .002 compared with baseline), and at 12 months (81%; P = .02 compared with baseline). Few patients reported that prognostic knowledge was very/extremely upsetting at baseline (7%), at 4 months (9%; P = .44 compared with baseline), or at 12 months (11%; P = .27 compared with baseline). The majority of patients were satisfied with the amount of prognostic information received throughout the year after diagnosis (81%, 86%, and 81%, respectively, at the time of diagnosis, at 4 months, and at 12 months). This percentage did not change between the time of diagnosis and 4 months (P = .16) or between diagnosis and 12 months (P = 1.00). In multivariable analysis, satisfaction with prognostic information received was associated with patient report of high‐quality communication (odds ratio, 2.67; 95% CI, 1.38‐5.17) and having a >75% chance of cure (odds ratio, 2.39; 95% CI, 1.24‐4.61) after adjustment for patient age category, race/ethnicity, and time point of administration.
Conclusions
The majority of AYA patients with cancer were satisfied with prognostic disclosure over time, but a sizeable minority wanted additional information. Desire for prognostic information increased over time. Clinicians should return to prognostic discussions over time to support AYA patients with cancer.
The majority of adolescent and young adult (AYA) patients with cancer are found to highly value prognostic information throughout the year after diagnosis. In the current study, although many AYA patients appear to be satisfied with the prognostic information received, a sizeable minority indicate unmet needs over time.</description><identifier>ISSN: 0008-543X</identifier><identifier>EISSN: 1097-0142</identifier><identifier>DOI: 10.1002/cncr.32533</identifier><identifier>PMID: 31568584</identifier><language>eng</language><publisher>United States: Wiley Subscription Services, Inc</publisher><subject>Adolescent ; adolescent and young adult (AYA) ; Adolescents ; Adult ; Age Factors ; Cancer ; Communication ; Diagnosis ; Female ; health care communication ; Humans ; Information Seeking Behavior ; Longitudinal Studies ; Male ; Minority & ethnic groups ; Neoplasms - mortality ; Neoplasms - psychology ; Oncology ; Patient Preference - psychology ; Patient Preference - statistics & numerical data ; Patient Satisfaction ; Patients ; Physician-Patient Relations ; physician‐patient relationship ; Prognosis ; Prospective Studies ; Surveys and Questionnaires - statistics & numerical data ; Time Factors ; Truth Disclosure ; Young Adult ; Young adults</subject><ispartof>Cancer, 2020-01, Vol.126 (2), p.400-407</ispartof><rights>2019 American Cancer Society</rights><rights>2019 American Cancer Society.</rights><rights>2020 American Cancer Society</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c4483-dd8bb51bd379c48632a42f6a8d30553bb3d86f9b2b53ea5b6ee824e0a6067a913</citedby><cites>FETCH-LOGICAL-c4483-dd8bb51bd379c48632a42f6a8d30553bb3d86f9b2b53ea5b6ee824e0a6067a913</cites><orcidid>0000-0001-5791-4178 ; 0000-0002-2456-2476</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://onlinelibrary.wiley.com/doi/pdf/10.1002%2Fcncr.32533$$EPDF$$P50$$Gwiley$$H</linktopdf><linktohtml>$$Uhttps://onlinelibrary.wiley.com/doi/full/10.1002%2Fcncr.32533$$EHTML$$P50$$Gwiley$$H</linktohtml><link.rule.ids>230,315,786,790,891,27957,27958,50923,51032</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/31568584$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Sisk, Bryan A.</creatorcontrib><creatorcontrib>Fasciano, Karen</creatorcontrib><creatorcontrib>Block, Susan D.</creatorcontrib><creatorcontrib>Mack, Jennifer W.</creatorcontrib><title>Longitudinal prognostic communication needs of adolescents and young adults with cancer</title><title>Cancer</title><addtitle>Cancer</addtitle><description>Background
Although the majority of adolescent and young adult (AYA) patients with cancer desire prognostic information, to the authors' knowledge little is known regarding how preferences for prognostic communication change over time.
Methods
The current study was a longitudinal, prospective, questionnaire‐based cohort study of 136 AYA patients with cancer who were aged 15 to 29 years and who were treated at a large academic cancer center. Previously published scales were administered at the time of diagnosis and at 4 months and 12 months after diagnosis.
Results
The majority of patients reported that prognostic information was very/extremely important at the time of diagnosis (85%), at 4 months (96%; P = .002 compared with baseline), and at 12 months (81%; P = .02 compared with baseline). Few patients reported that prognostic knowledge was very/extremely upsetting at baseline (7%), at 4 months (9%; P = .44 compared with baseline), or at 12 months (11%; P = .27 compared with baseline). The majority of patients were satisfied with the amount of prognostic information received throughout the year after diagnosis (81%, 86%, and 81%, respectively, at the time of diagnosis, at 4 months, and at 12 months). This percentage did not change between the time of diagnosis and 4 months (P = .16) or between diagnosis and 12 months (P = 1.00). In multivariable analysis, satisfaction with prognostic information received was associated with patient report of high‐quality communication (odds ratio, 2.67; 95% CI, 1.38‐5.17) and having a >75% chance of cure (odds ratio, 2.39; 95% CI, 1.24‐4.61) after adjustment for patient age category, race/ethnicity, and time point of administration.
Conclusions
The majority of AYA patients with cancer were satisfied with prognostic disclosure over time, but a sizeable minority wanted additional information. Desire for prognostic information increased over time. Clinicians should return to prognostic discussions over time to support AYA patients with cancer.
The majority of adolescent and young adult (AYA) patients with cancer are found to highly value prognostic information throughout the year after diagnosis. In the current study, although many AYA patients appear to be satisfied with the prognostic information received, a sizeable minority indicate unmet needs over time.</description><subject>Adolescent</subject><subject>adolescent and young adult (AYA)</subject><subject>Adolescents</subject><subject>Adult</subject><subject>Age Factors</subject><subject>Cancer</subject><subject>Communication</subject><subject>Diagnosis</subject><subject>Female</subject><subject>health care communication</subject><subject>Humans</subject><subject>Information Seeking Behavior</subject><subject>Longitudinal Studies</subject><subject>Male</subject><subject>Minority & ethnic groups</subject><subject>Neoplasms - mortality</subject><subject>Neoplasms - psychology</subject><subject>Oncology</subject><subject>Patient Preference - psychology</subject><subject>Patient Preference - statistics & numerical data</subject><subject>Patient Satisfaction</subject><subject>Patients</subject><subject>Physician-Patient Relations</subject><subject>physician‐patient relationship</subject><subject>Prognosis</subject><subject>Prospective Studies</subject><subject>Surveys and Questionnaires - statistics & numerical data</subject><subject>Time Factors</subject><subject>Truth Disclosure</subject><subject>Young Adult</subject><subject>Young adults</subject><issn>0008-543X</issn><issn>1097-0142</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2020</creationdate><recordtype>article</recordtype><recordid>eNp9kV1rFDEUhoNY2m3tjT9ABrwRYdp8T3JTkEWrsLQgit6FfM02ZSZZkxnL_vtm3VpaL7wKOXl4eE9eAF4jeIYgxOc22nxGMCPkBVggKLsWIopfggWEULSMkp9H4LiU23rtKnUIjghiXDBBF-DHKsV1mGYXoh6aTU7rmMoUbGPTOM4xWD2FFJvovStN6hvt0uCL9XEqjY6u2aY5rut0HurgLkw3jdXR-vwKHPR6KP704TwB3z99_Lb83K6uL78sP6xaS6kgrXPCGIaMI520VHCCNcU918IRyBgxhjjBe2mwYcRrZrj3AlMPNYe80xKRE3Cx925mM3q3C5b1oDY5jDpvVdJBPX-J4Uat02_VQQQJ2QnePQhy-jX7Mqkx1P2GQUef5qIwlrLjspO4om__QW_TnOu_VYoQyqXgDFbq_Z6yOZWSff8YBkG160vt-lJ_-qrwm6fxH9G_BVUA7YG7MPjtf1RqebX8upfeAwlEoi8</recordid><startdate>20200115</startdate><enddate>20200115</enddate><creator>Sisk, Bryan A.</creator><creator>Fasciano, Karen</creator><creator>Block, Susan D.</creator><creator>Mack, Jennifer W.</creator><general>Wiley Subscription Services, Inc</general><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>7TO</scope><scope>7U7</scope><scope>C1K</scope><scope>H94</scope><scope>K9.</scope><scope>NAPCQ</scope><scope>7X8</scope><scope>5PM</scope><orcidid>https://orcid.org/0000-0001-5791-4178</orcidid><orcidid>https://orcid.org/0000-0002-2456-2476</orcidid></search><sort><creationdate>20200115</creationdate><title>Longitudinal prognostic communication needs of adolescents and young adults with cancer</title><author>Sisk, Bryan A. ; Fasciano, Karen ; Block, Susan D. ; Mack, Jennifer W.</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c4483-dd8bb51bd379c48632a42f6a8d30553bb3d86f9b2b53ea5b6ee824e0a6067a913</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2020</creationdate><topic>Adolescent</topic><topic>adolescent and young adult (AYA)</topic><topic>Adolescents</topic><topic>Adult</topic><topic>Age Factors</topic><topic>Cancer</topic><topic>Communication</topic><topic>Diagnosis</topic><topic>Female</topic><topic>health care communication</topic><topic>Humans</topic><topic>Information Seeking Behavior</topic><topic>Longitudinal Studies</topic><topic>Male</topic><topic>Minority & ethnic groups</topic><topic>Neoplasms - mortality</topic><topic>Neoplasms - psychology</topic><topic>Oncology</topic><topic>Patient Preference - psychology</topic><topic>Patient Preference - statistics & numerical data</topic><topic>Patient Satisfaction</topic><topic>Patients</topic><topic>Physician-Patient Relations</topic><topic>physician‐patient relationship</topic><topic>Prognosis</topic><topic>Prospective Studies</topic><topic>Surveys and Questionnaires - statistics & numerical data</topic><topic>Time Factors</topic><topic>Truth Disclosure</topic><topic>Young Adult</topic><topic>Young adults</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Sisk, Bryan A.</creatorcontrib><creatorcontrib>Fasciano, Karen</creatorcontrib><creatorcontrib>Block, Susan D.</creatorcontrib><creatorcontrib>Mack, Jennifer W.</creatorcontrib><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>Oncogenes and Growth Factors Abstracts</collection><collection>Toxicology Abstracts</collection><collection>Environmental Sciences and Pollution Management</collection><collection>AIDS and Cancer Research Abstracts</collection><collection>ProQuest Health & Medical Complete (Alumni)</collection><collection>Nursing & Allied Health Premium</collection><collection>MEDLINE - Academic</collection><collection>PubMed Central (Full Participant titles)</collection><jtitle>Cancer</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Sisk, Bryan A.</au><au>Fasciano, Karen</au><au>Block, Susan D.</au><au>Mack, Jennifer W.</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Longitudinal prognostic communication needs of adolescents and young adults with cancer</atitle><jtitle>Cancer</jtitle><addtitle>Cancer</addtitle><date>2020-01-15</date><risdate>2020</risdate><volume>126</volume><issue>2</issue><spage>400</spage><epage>407</epage><pages>400-407</pages><issn>0008-543X</issn><eissn>1097-0142</eissn><notes>ObjectType-Article-1</notes><notes>SourceType-Scholarly Journals-1</notes><notes>ObjectType-Feature-2</notes><notes>content type line 23</notes><notes>Contributions: Dr. Sisk conceptualized and wrote the original draft; Drs. Block and Fasciano participated in investigation, reviewing, and editing; Dr. Mack participated in conceptualization, formal analysis, and reviewing and editing.</notes><abstract>Background
Although the majority of adolescent and young adult (AYA) patients with cancer desire prognostic information, to the authors' knowledge little is known regarding how preferences for prognostic communication change over time.
Methods
The current study was a longitudinal, prospective, questionnaire‐based cohort study of 136 AYA patients with cancer who were aged 15 to 29 years and who were treated at a large academic cancer center. Previously published scales were administered at the time of diagnosis and at 4 months and 12 months after diagnosis.
Results
The majority of patients reported that prognostic information was very/extremely important at the time of diagnosis (85%), at 4 months (96%; P = .002 compared with baseline), and at 12 months (81%; P = .02 compared with baseline). Few patients reported that prognostic knowledge was very/extremely upsetting at baseline (7%), at 4 months (9%; P = .44 compared with baseline), or at 12 months (11%; P = .27 compared with baseline). The majority of patients were satisfied with the amount of prognostic information received throughout the year after diagnosis (81%, 86%, and 81%, respectively, at the time of diagnosis, at 4 months, and at 12 months). This percentage did not change between the time of diagnosis and 4 months (P = .16) or between diagnosis and 12 months (P = 1.00). In multivariable analysis, satisfaction with prognostic information received was associated with patient report of high‐quality communication (odds ratio, 2.67; 95% CI, 1.38‐5.17) and having a >75% chance of cure (odds ratio, 2.39; 95% CI, 1.24‐4.61) after adjustment for patient age category, race/ethnicity, and time point of administration.
Conclusions
The majority of AYA patients with cancer were satisfied with prognostic disclosure over time, but a sizeable minority wanted additional information. Desire for prognostic information increased over time. Clinicians should return to prognostic discussions over time to support AYA patients with cancer.
The majority of adolescent and young adult (AYA) patients with cancer are found to highly value prognostic information throughout the year after diagnosis. In the current study, although many AYA patients appear to be satisfied with the prognostic information received, a sizeable minority indicate unmet needs over time.</abstract><cop>United States</cop><pub>Wiley Subscription Services, Inc</pub><pmid>31568584</pmid><doi>10.1002/cncr.32533</doi><tpages>8</tpages><orcidid>https://orcid.org/0000-0001-5791-4178</orcidid><orcidid>https://orcid.org/0000-0002-2456-2476</orcidid><oa>free_for_read</oa></addata></record> |
| fulltext | fulltext |
| identifier | ISSN: 0008-543X |
| ispartof | Cancer, 2020-01, Vol.126 (2), p.400-407 |
| issn | 0008-543X 1097-0142 |
| language | eng |
| recordid | cdi_pubmedcentral_primary_oai_pubmedcentral_nih_gov_7010331 |
| source | Wiley; EZB Electronic Journals Library |
| subjects | Adolescent adolescent and young adult (AYA) Adolescents Adult Age Factors Cancer Communication Diagnosis Female health care communication Humans Information Seeking Behavior Longitudinal Studies Male Minority & ethnic groups Neoplasms - mortality Neoplasms - psychology Oncology Patient Preference - psychology Patient Preference - statistics & numerical data Patient Satisfaction Patients Physician-Patient Relations physician‐patient relationship Prognosis Prospective Studies Surveys and Questionnaires - statistics & numerical data Time Factors Truth Disclosure Young Adult Young adults |
| title | Longitudinal prognostic communication needs of adolescents and young adults with cancer |
| url | http://sfxeu10.hosted.exlibrisgroup.com/loughborough?ctx_ver=Z39.88-2004&ctx_enc=info:ofi/enc:UTF-8&ctx_tim=2024-09-23T06%3A34%3A45IST&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=Longitudinal%20prognostic%20communication%20needs%20of%20adolescents%20and%20young%20adults%20with%20cancer&rft.jtitle=Cancer&rft.au=Sisk,%20Bryan%20A.&rft.date=2020-01-15&rft.volume=126&rft.issue=2&rft.spage=400&rft.epage=407&rft.pages=400-407&rft.issn=0008-543X&rft.eissn=1097-0142&rft_id=info:doi/10.1002/cncr.32533&rft_dat=%3Cproquest_pubme%3E2299769792%3C/proquest_pubme%3E%3Cgrp_id%3Ecdi_FETCH-LOGICAL-c4483-dd8bb51bd379c48632a42f6a8d30553bb3d86f9b2b53ea5b6ee824e0a6067a913%3C/grp_id%3E%3Coa%3E%3C/oa%3E%3Curl%3E%3C/url%3E&rft_id=info:oai/&rft_pqid=2334698650&rft_id=info:pmid/31568584&rfr_iscdi=true |