Greatest Challenges of Rectal Cancer Survivors: Results of a Population-Based Survey

BACKGROUND:Eliciting the priorities of cancer survivors is essential to address the specific needs of cancer survivor subgroups. OBJECTIVE:The purpose of this study was to describe the greatest challenges related to treatment for long-term rectal cancer survivors. DESIGN:This was an observational st...

Ausführliche Beschreibung

Gespeichert in:
Bibliographische Detailangaben
Veröffentlicht in:Diseases of the colon & rectum 2016-11, Vol.59 (11), p.1019-1027
Hauptverfasser: McMullen, Carmit K, Bulkley, Joanna E, Altschuler, Andrea, Wendel, Christopher S, Grant, Marcia, Hornbrook, Mark C, Sun, Virginia, Krouse, Robert S
Format: Artikel
Sprache:eng
Schlagworte:
Online-Zugang:Volltext
Tags: Tag hinzufügen
Keine Tags, Fügen Sie den ersten Tag hinzu!
container_end_page 1027
container_issue 11
container_start_page 1019
container_title Diseases of the colon & rectum
container_volume 59
creator McMullen, Carmit K
Bulkley, Joanna E
Altschuler, Andrea
Wendel, Christopher S
Grant, Marcia
Hornbrook, Mark C
Sun, Virginia
Krouse, Robert S
description BACKGROUND:Eliciting the priorities of cancer survivors is essential to address the specific needs of cancer survivor subgroups. OBJECTIVE:The purpose of this study was to describe the greatest challenges related to treatment for long-term rectal cancer survivors. DESIGN:This was an observational study with a cross-sectional survey. SETTINGS:The study included members of Kaiser Permanente Northern California and Northwest health plans. PATIENTS:A survey was mailed to long-term (≥5 years postdiagnosis) survivors of rectal cancer who had an anastomosis, temporary ostomy, or permanent ostomy. MAIN OUTCOME MEASURES:The main outcome was measured with an open-ended question about the greatest challenge related to cancer surgery. We categorized responses using a grounded theory approach with double coding for reliability. Bonferroni-adjusted χ values were used to assess differences in the proportions of subgroups who mentioned challenges within each response category. RESULTS:The survey completion rate was 61% (577/953); 76% (440/577) of participants responded to the greatest challenge question. The greatest challenges for respondents were bowel/ostomy management (reported by 44%), negative psychosocial effects (37%), late effects of treatment (21%), comorbidities and aging (13%), postoperative recovery (5%), and negative healthcare experiences (5%). Survivors with temporary ostomy or anastomosis were more likely than survivors with permanent ostomy to report late effects (p < 0.0001 and p = 0.01). Survivors with anastomosis were less likely than survivors with permanent ostomy to report negative psychosocial impacts (p = 0.0001). LIMITATIONS:Generalizability is restricted by the lack of ethnically and racially diverse, uninsured (non-Medicare–eligible population), and non-English–speaking participants. Because the survey was cross-sectional and included respondents at different times since diagnosis, we could not adequately address changes in the greatest challenges over time. CONCLUSIONS:Our results reveal the need for bowel/ostomy management, psychosocial services, and surveillance for late effects in survivorship and supportive care services for all survivors of rectal cancer, regardless of ostomy status. The perspective of long-term survivors with anastomosis reveals challenges that may not be anticipated during decision making for treatment (see Video, Supplemental Digital Content 1, http://links.lww.com/DCR/A254).
doi_str_mv 10.1097/DCR.0000000000000695
format Article
fullrecord <record><control><sourceid>proquest_pubme</sourceid><recordid>TN_cdi_pubmedcentral_primary_oai_pubmedcentral_nih_gov_5226258</recordid><sourceformat>XML</sourceformat><sourcesystem>PC</sourcesystem><sourcerecordid>1835437974</sourcerecordid><originalsourceid>FETCH-LOGICAL-c4533-63a939b81e7dabf0c61f8db3d6a1ad57b835759e9747626aead171d3bafb5c073</originalsourceid><addsrcrecordid>eNpdkVtPxCAQhYnR6Hr5B8b00ZeuUAq0PphovSYmGi_PZNpO3SpbVmjX-O_F9S4vZJgzHydzCNlmdMxorvaOi5sx_X1kLpbIiAlOY8pFtkxGlLIk5orKNbLu_WMoaULVKllLlErzVMkRuTtzCD36PiomYAx2D-gj20Q3WPVgogK6Cl10O7h5O7fO74eGH0y_0EB0bWeDgb61XXwEHuuFEF83yUoDxuPW571B7k9P7orz-PLq7KI4vIyrVHAeSw45z8uMoaqhbGglWZPVJa8lMKiFKjMulMgxV8FqIgGhZorVvISmFBVVfIMcfHBnQznFusKud2D0zLVTcK_aQqv_drp2oh_sXIskkYnIAmD3E-Ds8xC2oKetr9AY6NAOXrPgIOUqGAjS9ENaOeu9w-b7G0b1eyA6BKL_BxLGdn5b_B76SuCH-2JNj84_meEFnZ4gmH6y4PGwrDihTDIWqnjxxN8AbpqXGw</addsrcrecordid><sourcetype>Open Access Repository</sourcetype><iscdi>true</iscdi><recordtype>article</recordtype><pqid>1835437974</pqid></control><display><type>article</type><title>Greatest Challenges of Rectal Cancer Survivors: Results of a Population-Based Survey</title><source>MEDLINE</source><source>Journals@Ovid Complete</source><creator>McMullen, Carmit K ; Bulkley, Joanna E ; Altschuler, Andrea ; Wendel, Christopher S ; Grant, Marcia ; Hornbrook, Mark C ; Sun, Virginia ; Krouse, Robert S</creator><creatorcontrib>McMullen, Carmit K ; Bulkley, Joanna E ; Altschuler, Andrea ; Wendel, Christopher S ; Grant, Marcia ; Hornbrook, Mark C ; Sun, Virginia ; Krouse, Robert S</creatorcontrib><description>BACKGROUND:Eliciting the priorities of cancer survivors is essential to address the specific needs of cancer survivor subgroups. OBJECTIVE:The purpose of this study was to describe the greatest challenges related to treatment for long-term rectal cancer survivors. DESIGN:This was an observational study with a cross-sectional survey. SETTINGS:The study included members of Kaiser Permanente Northern California and Northwest health plans. PATIENTS:A survey was mailed to long-term (≥5 years postdiagnosis) survivors of rectal cancer who had an anastomosis, temporary ostomy, or permanent ostomy. MAIN OUTCOME MEASURES:The main outcome was measured with an open-ended question about the greatest challenge related to cancer surgery. We categorized responses using a grounded theory approach with double coding for reliability. Bonferroni-adjusted χ values were used to assess differences in the proportions of subgroups who mentioned challenges within each response category. RESULTS:The survey completion rate was 61% (577/953); 76% (440/577) of participants responded to the greatest challenge question. The greatest challenges for respondents were bowel/ostomy management (reported by 44%), negative psychosocial effects (37%), late effects of treatment (21%), comorbidities and aging (13%), postoperative recovery (5%), and negative healthcare experiences (5%). Survivors with temporary ostomy or anastomosis were more likely than survivors with permanent ostomy to report late effects (p &lt; 0.0001 and p = 0.01). Survivors with anastomosis were less likely than survivors with permanent ostomy to report negative psychosocial impacts (p = 0.0001). LIMITATIONS:Generalizability is restricted by the lack of ethnically and racially diverse, uninsured (non-Medicare–eligible population), and non-English–speaking participants. Because the survey was cross-sectional and included respondents at different times since diagnosis, we could not adequately address changes in the greatest challenges over time. CONCLUSIONS:Our results reveal the need for bowel/ostomy management, psychosocial services, and surveillance for late effects in survivorship and supportive care services for all survivors of rectal cancer, regardless of ostomy status. The perspective of long-term survivors with anastomosis reveals challenges that may not be anticipated during decision making for treatment (see Video, Supplemental Digital Content 1, http://links.lww.com/DCR/A254).</description><identifier>ISSN: 0012-3706</identifier><identifier>EISSN: 1530-0358</identifier><identifier>DOI: 10.1097/DCR.0000000000000695</identifier><identifier>PMID: 27749476</identifier><language>eng</language><publisher>United States: The American Society of Colon and Rectal Surgeons</publisher><subject>Aged ; Aged, 80 and over ; Colectomy - adverse effects ; Colectomy - methods ; Colectomy - psychology ; Cross-Sectional Studies ; Female ; Health Surveys ; Humans ; Long Term Adverse Effects - etiology ; Long Term Adverse Effects - psychology ; Male ; Middle Aged ; Ostomy - methods ; Ostomy - psychology ; Patient Preference - statistics &amp; numerical data ; Quality of Life ; Rectal Neoplasms - psychology ; Rectal Neoplasms - surgery ; Survivors - psychology ; United States</subject><ispartof>Diseases of the colon &amp; rectum, 2016-11, Vol.59 (11), p.1019-1027</ispartof><rights>2016 The American Society of Colon and Rectal Surgeons</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c4533-63a939b81e7dabf0c61f8db3d6a1ad57b835759e9747626aead171d3bafb5c073</citedby><cites>FETCH-LOGICAL-c4533-63a939b81e7dabf0c61f8db3d6a1ad57b835759e9747626aead171d3bafb5c073</cites></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><link.rule.ids>230,314,780,784,885,27924,27925</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/27749476$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>McMullen, Carmit K</creatorcontrib><creatorcontrib>Bulkley, Joanna E</creatorcontrib><creatorcontrib>Altschuler, Andrea</creatorcontrib><creatorcontrib>Wendel, Christopher S</creatorcontrib><creatorcontrib>Grant, Marcia</creatorcontrib><creatorcontrib>Hornbrook, Mark C</creatorcontrib><creatorcontrib>Sun, Virginia</creatorcontrib><creatorcontrib>Krouse, Robert S</creatorcontrib><title>Greatest Challenges of Rectal Cancer Survivors: Results of a Population-Based Survey</title><title>Diseases of the colon &amp; rectum</title><addtitle>Dis Colon Rectum</addtitle><description>BACKGROUND:Eliciting the priorities of cancer survivors is essential to address the specific needs of cancer survivor subgroups. OBJECTIVE:The purpose of this study was to describe the greatest challenges related to treatment for long-term rectal cancer survivors. DESIGN:This was an observational study with a cross-sectional survey. SETTINGS:The study included members of Kaiser Permanente Northern California and Northwest health plans. PATIENTS:A survey was mailed to long-term (≥5 years postdiagnosis) survivors of rectal cancer who had an anastomosis, temporary ostomy, or permanent ostomy. MAIN OUTCOME MEASURES:The main outcome was measured with an open-ended question about the greatest challenge related to cancer surgery. We categorized responses using a grounded theory approach with double coding for reliability. Bonferroni-adjusted χ values were used to assess differences in the proportions of subgroups who mentioned challenges within each response category. RESULTS:The survey completion rate was 61% (577/953); 76% (440/577) of participants responded to the greatest challenge question. The greatest challenges for respondents were bowel/ostomy management (reported by 44%), negative psychosocial effects (37%), late effects of treatment (21%), comorbidities and aging (13%), postoperative recovery (5%), and negative healthcare experiences (5%). Survivors with temporary ostomy or anastomosis were more likely than survivors with permanent ostomy to report late effects (p &lt; 0.0001 and p = 0.01). Survivors with anastomosis were less likely than survivors with permanent ostomy to report negative psychosocial impacts (p = 0.0001). LIMITATIONS:Generalizability is restricted by the lack of ethnically and racially diverse, uninsured (non-Medicare–eligible population), and non-English–speaking participants. Because the survey was cross-sectional and included respondents at different times since diagnosis, we could not adequately address changes in the greatest challenges over time. CONCLUSIONS:Our results reveal the need for bowel/ostomy management, psychosocial services, and surveillance for late effects in survivorship and supportive care services for all survivors of rectal cancer, regardless of ostomy status. The perspective of long-term survivors with anastomosis reveals challenges that may not be anticipated during decision making for treatment (see Video, Supplemental Digital Content 1, http://links.lww.com/DCR/A254).</description><subject>Aged</subject><subject>Aged, 80 and over</subject><subject>Colectomy - adverse effects</subject><subject>Colectomy - methods</subject><subject>Colectomy - psychology</subject><subject>Cross-Sectional Studies</subject><subject>Female</subject><subject>Health Surveys</subject><subject>Humans</subject><subject>Long Term Adverse Effects - etiology</subject><subject>Long Term Adverse Effects - psychology</subject><subject>Male</subject><subject>Middle Aged</subject><subject>Ostomy - methods</subject><subject>Ostomy - psychology</subject><subject>Patient Preference - statistics &amp; numerical data</subject><subject>Quality of Life</subject><subject>Rectal Neoplasms - psychology</subject><subject>Rectal Neoplasms - surgery</subject><subject>Survivors - psychology</subject><subject>United States</subject><issn>0012-3706</issn><issn>1530-0358</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2016</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><recordid>eNpdkVtPxCAQhYnR6Hr5B8b00ZeuUAq0PphovSYmGi_PZNpO3SpbVmjX-O_F9S4vZJgzHydzCNlmdMxorvaOi5sx_X1kLpbIiAlOY8pFtkxGlLIk5orKNbLu_WMoaULVKllLlErzVMkRuTtzCD36PiomYAx2D-gj20Q3WPVgogK6Cl10O7h5O7fO74eGH0y_0EB0bWeDgb61XXwEHuuFEF83yUoDxuPW571B7k9P7orz-PLq7KI4vIyrVHAeSw45z8uMoaqhbGglWZPVJa8lMKiFKjMulMgxV8FqIgGhZorVvISmFBVVfIMcfHBnQznFusKud2D0zLVTcK_aQqv_drp2oh_sXIskkYnIAmD3E-Ds8xC2oKetr9AY6NAOXrPgIOUqGAjS9ENaOeu9w-b7G0b1eyA6BKL_BxLGdn5b_B76SuCH-2JNj84_meEFnZ4gmH6y4PGwrDihTDIWqnjxxN8AbpqXGw</recordid><startdate>201611</startdate><enddate>201611</enddate><creator>McMullen, Carmit K</creator><creator>Bulkley, Joanna E</creator><creator>Altschuler, Andrea</creator><creator>Wendel, Christopher S</creator><creator>Grant, Marcia</creator><creator>Hornbrook, Mark C</creator><creator>Sun, Virginia</creator><creator>Krouse, Robert S</creator><general>The American Society of Colon and Rectal Surgeons</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>7X8</scope><scope>5PM</scope></search><sort><creationdate>201611</creationdate><title>Greatest Challenges of Rectal Cancer Survivors: Results of a Population-Based Survey</title><author>McMullen, Carmit K ; Bulkley, Joanna E ; Altschuler, Andrea ; Wendel, Christopher S ; Grant, Marcia ; Hornbrook, Mark C ; Sun, Virginia ; Krouse, Robert S</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c4533-63a939b81e7dabf0c61f8db3d6a1ad57b835759e9747626aead171d3bafb5c073</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2016</creationdate><topic>Aged</topic><topic>Aged, 80 and over</topic><topic>Colectomy - adverse effects</topic><topic>Colectomy - methods</topic><topic>Colectomy - psychology</topic><topic>Cross-Sectional Studies</topic><topic>Female</topic><topic>Health Surveys</topic><topic>Humans</topic><topic>Long Term Adverse Effects - etiology</topic><topic>Long Term Adverse Effects - psychology</topic><topic>Male</topic><topic>Middle Aged</topic><topic>Ostomy - methods</topic><topic>Ostomy - psychology</topic><topic>Patient Preference - statistics &amp; numerical data</topic><topic>Quality of Life</topic><topic>Rectal Neoplasms - psychology</topic><topic>Rectal Neoplasms - surgery</topic><topic>Survivors - psychology</topic><topic>United States</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>McMullen, Carmit K</creatorcontrib><creatorcontrib>Bulkley, Joanna E</creatorcontrib><creatorcontrib>Altschuler, Andrea</creatorcontrib><creatorcontrib>Wendel, Christopher S</creatorcontrib><creatorcontrib>Grant, Marcia</creatorcontrib><creatorcontrib>Hornbrook, Mark C</creatorcontrib><creatorcontrib>Sun, Virginia</creatorcontrib><creatorcontrib>Krouse, Robert S</creatorcontrib><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>MEDLINE - Academic</collection><collection>PubMed Central (Full Participant titles)</collection><jtitle>Diseases of the colon &amp; rectum</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>McMullen, Carmit K</au><au>Bulkley, Joanna E</au><au>Altschuler, Andrea</au><au>Wendel, Christopher S</au><au>Grant, Marcia</au><au>Hornbrook, Mark C</au><au>Sun, Virginia</au><au>Krouse, Robert S</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Greatest Challenges of Rectal Cancer Survivors: Results of a Population-Based Survey</atitle><jtitle>Diseases of the colon &amp; rectum</jtitle><addtitle>Dis Colon Rectum</addtitle><date>2016-11</date><risdate>2016</risdate><volume>59</volume><issue>11</issue><spage>1019</spage><epage>1027</epage><pages>1019-1027</pages><issn>0012-3706</issn><eissn>1530-0358</eissn><abstract>BACKGROUND:Eliciting the priorities of cancer survivors is essential to address the specific needs of cancer survivor subgroups. OBJECTIVE:The purpose of this study was to describe the greatest challenges related to treatment for long-term rectal cancer survivors. DESIGN:This was an observational study with a cross-sectional survey. SETTINGS:The study included members of Kaiser Permanente Northern California and Northwest health plans. PATIENTS:A survey was mailed to long-term (≥5 years postdiagnosis) survivors of rectal cancer who had an anastomosis, temporary ostomy, or permanent ostomy. MAIN OUTCOME MEASURES:The main outcome was measured with an open-ended question about the greatest challenge related to cancer surgery. We categorized responses using a grounded theory approach with double coding for reliability. Bonferroni-adjusted χ values were used to assess differences in the proportions of subgroups who mentioned challenges within each response category. RESULTS:The survey completion rate was 61% (577/953); 76% (440/577) of participants responded to the greatest challenge question. The greatest challenges for respondents were bowel/ostomy management (reported by 44%), negative psychosocial effects (37%), late effects of treatment (21%), comorbidities and aging (13%), postoperative recovery (5%), and negative healthcare experiences (5%). Survivors with temporary ostomy or anastomosis were more likely than survivors with permanent ostomy to report late effects (p &lt; 0.0001 and p = 0.01). Survivors with anastomosis were less likely than survivors with permanent ostomy to report negative psychosocial impacts (p = 0.0001). LIMITATIONS:Generalizability is restricted by the lack of ethnically and racially diverse, uninsured (non-Medicare–eligible population), and non-English–speaking participants. Because the survey was cross-sectional and included respondents at different times since diagnosis, we could not adequately address changes in the greatest challenges over time. CONCLUSIONS:Our results reveal the need for bowel/ostomy management, psychosocial services, and surveillance for late effects in survivorship and supportive care services for all survivors of rectal cancer, regardless of ostomy status. The perspective of long-term survivors with anastomosis reveals challenges that may not be anticipated during decision making for treatment (see Video, Supplemental Digital Content 1, http://links.lww.com/DCR/A254).</abstract><cop>United States</cop><pub>The American Society of Colon and Rectal Surgeons</pub><pmid>27749476</pmid><doi>10.1097/DCR.0000000000000695</doi><tpages>9</tpages><oa>free_for_read</oa></addata></record>
fulltext fulltext
identifier ISSN: 0012-3706
ispartof Diseases of the colon & rectum, 2016-11, Vol.59 (11), p.1019-1027
issn 0012-3706
1530-0358
language eng
recordid cdi_pubmedcentral_primary_oai_pubmedcentral_nih_gov_5226258
source MEDLINE; Journals@Ovid Complete
subjects Aged
Aged, 80 and over
Colectomy - adverse effects
Colectomy - methods
Colectomy - psychology
Cross-Sectional Studies
Female
Health Surveys
Humans
Long Term Adverse Effects - etiology
Long Term Adverse Effects - psychology
Male
Middle Aged
Ostomy - methods
Ostomy - psychology
Patient Preference - statistics & numerical data
Quality of Life
Rectal Neoplasms - psychology
Rectal Neoplasms - surgery
Survivors - psychology
United States
title Greatest Challenges of Rectal Cancer Survivors: Results of a Population-Based Survey
url https://sfx.bib-bvb.de/sfx_tum?ctx_ver=Z39.88-2004&ctx_enc=info:ofi/enc:UTF-8&ctx_tim=2025-01-06T13%3A12%3A48IST&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=Greatest%20Challenges%20of%20Rectal%20Cancer%20Survivors:%20Results%20of%20a%20Population-Based%20Survey&rft.jtitle=Diseases%20of%20the%20colon%20&%20rectum&rft.au=McMullen,%20Carmit%20K&rft.date=2016-11&rft.volume=59&rft.issue=11&rft.spage=1019&rft.epage=1027&rft.pages=1019-1027&rft.issn=0012-3706&rft.eissn=1530-0358&rft_id=info:doi/10.1097/DCR.0000000000000695&rft_dat=%3Cproquest_pubme%3E1835437974%3C/proquest_pubme%3E%3Curl%3E%3C/url%3E&disable_directlink=true&sfx.directlink=off&sfx.report_link=0&rft_id=info:oai/&rft_pqid=1835437974&rft_id=info:pmid/27749476&rfr_iscdi=true