Analysis of Unmet Information Needs Among Patients With Thyroid Cancer
Importance: Counseling prior to thyroid cancer (TC) treatment is an essential component of informed consent. An informed patient affects treatment-related expectations and patient engagement, factors that contribute significantly to patient-reported quality-of-life outcomes.
Objective: To describe experiences with pretreatment counseling among survivors of TC and to test factors associated with self-reported treatment meeting expectations.
Design, Setting, and Participants: A cross-sectional survey was administered between October 18, 2019, and February 8, 2020, to members of ThyCa: Thyroid Cancer Survivors' Association Inc, and to individuals accessing the public-facing ThyCa website. Survey respondents were asked 55 questions, including 4 free-text questions and 2 multiple-choice questions about pretreatment counseling.
Main Outcomes and Measures: Respondents self-reported (1) their unmet information needs, (2) rates of treatment meeting expectations, and (3) rates of treatment understanding. A mixed-methods analysis was performed, including qualitative content analysis of free-text responses and multivariable logistic regression of factors associated with self-reported levels of treatment meeting expectations.
Results: Of the 1412 survey respondents, 1249 were women (88.4%). The median age at diagnosis was 48 years (range, 18-85 years), and the median age at the time of survey completion was 60 years (range, 18-87 years). A total of 1259 respondents (89.2%) provided free-text responses to the question, "What would you tell someone newly diagnosed with your same condition?" Of these individuals, 526 (37.2%) reported inadequate pretreatment plan understanding and 578 (40.9%) reported that their treatment experience did not meet their expectations. Treatment met expectations for only 95 respondents (18.1%) reporting an inadequate pretreatment plan understanding. Of the 526 survivors of TC reporting a lack of understanding, 473 (90.0%) provided additional textual comments, most commonly in the categories of postoperative treatment, surveillance, and treatment effects. On multivariable logistic regression, self-reported failure to have an understanding of TC treatment was independently associated with failure of treatment to meet expectations (odds ratio, 5.1 [95% CI, 3.7-6.9]). Patients reporting a full understanding of their treatment plan were 5-fold more likely to indicate that their initial treatment experience was on par with expectations, independent of reported postoperative complications, age, sex, and other potential confounders.
Conclusions and Relevance: In this survey study, a substantial proportion of survivors of TC reported inadequate pretreatment understanding. This gap in understanding was associated with high levels of self-reported failure of treatment to meet expectations, which in turn is associated in other studies with poorer patient-reported quality-of-life outcomes. These outcomes may be improved by addressing gaps in patient understanding so expectations more closely match TC diagnosis and treatment pathways.
| Errataetall: |
CommentIn: JAMA Otolaryngol Head Neck Surg. 2023 Feb 1;149(2):120-121. - PMID 36580317 |
|---|---|
| Medienart: |
E-Artikel |
| Erscheinungsjahr: |
2023 |
|---|---|
| Erschienen: |
2023 |
| Enthalten in: |
Zur Gesamtaufnahme - volume:149 |
|---|---|
| Enthalten in: |
JAMA otolaryngology-- head & neck surgery - 149(2023), 2 vom: 01. Feb., Seite 110-119 |
| Sprache: |
Englisch |
|---|
| Beteiligte Personen: |
Karcioglu, Amanda Silver [VerfasserIn] |
|---|
| Links: |
|---|
| Themen: |
|---|
| Anmerkungen: |
Date Completed 13.02.2023 Date Revised 30.12.2023 published: Print CommentIn: JAMA Otolaryngol Head Neck Surg. 2023 Feb 1;149(2):120-121. - PMID 36580317 Citation Status MEDLINE |
|---|
| doi: |
10.1001/jamaoto.2022.4108 |
|---|
| funding: |
|
|---|---|
| Förderinstitution / Projekttitel: |
|
| PPN (Katalog-ID): |
NLM350916551 |
|---|
| LEADER | 01000caa a22002652 4500 | ||
|---|---|---|---|
| 001 | NLM350916551 | ||
| 003 | DE-627 | ||
| 005 | 20240108140147.0 | ||
| 007 | cr uuu---uuuuu | ||
| 008 | 231226s2023 xx |||||o 00| ||eng c | ||
| 024 | 7 | |a 10.1001/jamaoto.2022.4108 |2 doi | |
| 028 | 5 | 2 | |a pubmed24n1243.xml |
| 035 | |a (DE-627)NLM350916551 | ||
| 035 | |a (NLM)36580287 | ||
| 040 | |a DE-627 |b ger |c DE-627 |e rakwb | ||
| 041 | |a eng | ||
| 100 | 1 | |a Karcioglu, Amanda Silver |e verfasserin |4 aut | |
| 245 | 1 | 0 | |a Analysis of Unmet Information Needs Among Patients With Thyroid Cancer |
| 264 | 1 | |c 2023 | |
| 336 | |a Text |b txt |2 rdacontent | ||
| 337 | |a ƒaComputermedien |b c |2 rdamedia | ||
| 338 | |a ƒa Online-Ressource |b cr |2 rdacarrier | ||
| 500 | |a Date Completed 13.02.2023 | ||
| 500 | |a Date Revised 30.12.2023 | ||
| 500 | |a published: Print | ||
| 500 | |a CommentIn: JAMA Otolaryngol Head Neck Surg. 2023 Feb 1;149(2):120-121. - PMID 36580317 | ||
| 500 | |a Citation Status MEDLINE | ||
| 520 | |a Importance: Counseling prior to thyroid cancer (TC) treatment is an essential component of informed consent. An informed patient affects treatment-related expectations and patient engagement, factors that contribute significantly to patient-reported quality-of-life outcomes | ||
| 520 | |a Objective: To describe experiences with pretreatment counseling among survivors of TC and to test factors associated with self-reported treatment meeting expectations | ||
| 520 | |a Design, Setting, and Participants: A cross-sectional survey was administered between October 18, 2019, and February 8, 2020, to members of ThyCa: Thyroid Cancer Survivors' Association Inc, and to individuals accessing the public-facing ThyCa website. Survey respondents were asked 55 questions, including 4 free-text questions and 2 multiple-choice questions about pretreatment counseling | ||
| 520 | |a Main Outcomes and Measures: Respondents self-reported (1) their unmet information needs, (2) rates of treatment meeting expectations, and (3) rates of treatment understanding. A mixed-methods analysis was performed, including qualitative content analysis of free-text responses and multivariable logistic regression of factors associated with self-reported levels of treatment meeting expectations | ||
| 520 | |a Results: Of the 1412 survey respondents, 1249 were women (88.4%). The median age at diagnosis was 48 years (range, 18-85 years), and the median age at the time of survey completion was 60 years (range, 18-87 years). A total of 1259 respondents (89.2%) provided free-text responses to the question, "What would you tell someone newly diagnosed with your same condition?" Of these individuals, 526 (37.2%) reported inadequate pretreatment plan understanding and 578 (40.9%) reported that their treatment experience did not meet their expectations. Treatment met expectations for only 95 respondents (18.1%) reporting an inadequate pretreatment plan understanding. Of the 526 survivors of TC reporting a lack of understanding, 473 (90.0%) provided additional textual comments, most commonly in the categories of postoperative treatment, surveillance, and treatment effects. On multivariable logistic regression, self-reported failure to have an understanding of TC treatment was independently associated with failure of treatment to meet expectations (odds ratio, 5.1 [95% CI, 3.7-6.9]). Patients reporting a full understanding of their treatment plan were 5-fold more likely to indicate that their initial treatment experience was on par with expectations, independent of reported postoperative complications, age, sex, and other potential confounders | ||
| 520 | |a Conclusions and Relevance: In this survey study, a substantial proportion of survivors of TC reported inadequate pretreatment understanding. This gap in understanding was associated with high levels of self-reported failure of treatment to meet expectations, which in turn is associated in other studies with poorer patient-reported quality-of-life outcomes. These outcomes may be improved by addressing gaps in patient understanding so expectations more closely match TC diagnosis and treatment pathways | ||
| 650 | 4 | |a Journal Article | |
| 700 | 1 | |a Dhillon, Vaninder K |e verfasserin |4 aut | |
| 700 | 1 | |a Davies, Louise |e verfasserin |4 aut | |
| 700 | 1 | |a Stack, Brendan C |c Jr |e verfasserin |4 aut | |
| 700 | 1 | |a Bloom, Gary |e verfasserin |4 aut | |
| 700 | 1 | |a Randolph, Gregory |e verfasserin |4 aut | |
| 700 | 1 | |a Lango, Miriam N |e verfasserin |4 aut | |
| 773 | 0 | 8 | |i Enthalten in |t JAMA otolaryngology-- head & neck surgery |d 2013 |g 149(2023), 2 vom: 01. Feb., Seite 110-119 |w (DE-627)NLM223516740 |x 2168-619X |7 nnns |
| 773 | 1 | 8 | |g volume:149 |g year:2023 |g number:2 |g day:01 |g month:02 |g pages:110-119 |
| 856 | 4 | 0 | |u http://dx.doi.org/10.1001/jamaoto.2022.4108 |3 Volltext |
| 912 | |a GBV_USEFLAG_A | ||
| 912 | |a GBV_NLM | ||
| 951 | |a AR | ||
| 952 | |d 149 |j 2023 |e 2 |b 01 |c 02 |h 110-119 | ||