A systematic literature review of the assessment of treatment burden experienced by patients and their caregivers

Many older adults with multiple chronic conditions, particularly those who are functionally impaired, spend considerable time juggling the competing demands of managing their conditions often assisted by caregivers. We examined methods of assessing the treatment burden experienced by this population...

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Published inBMC geriatrics Vol. 19; no. 1; pp. 262 - 11
Main Authors Sheehan, Orla C., Leff, Bruce, Ritchie, Christine S., Garrigues, Sarah K., Li, Lingsheng, Saliba, Debra, Fathi, Roya, Boyd, Cynthia M.
Format Journal Article
LanguageEnglish
Published England BioMed Central Ltd 11.10.2019
BioMed Central
BMC
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ISSN1471-2318
1471-2318
DOI10.1186/s12877-019-1222-z

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Abstract Many older adults with multiple chronic conditions, particularly those who are functionally impaired, spend considerable time juggling the competing demands of managing their conditions often assisted by caregivers. We examined methods of assessing the treatment burden experienced by this population as a first step to identifying strategies to reduce it. Systematic searches were performed of the peer-reviewed and grey-literature (PubMed, Cochrane library, CINAHL, EMBASE, Web of Science, SCOPUS, New York Academy of Medicine Grey Literature Review, NLM catalog and ProQuest Digital Theses and Dissertations). After title and abstract screening, both qualitative and quantitative articles describing approaches to assessment of treatment burden were included. Forty-five articles from the peer reviewed and three items from the grey literature were identified. Most articles (34/48) discussed treatment burden associated with a specific condition. All but one examined the treatment burden experienced by patients and six addressed the treatment burden experienced by caregivers. Qualitative studies revealed many aspects of treatment burden including the burdens of understanding the condition, juggling, monitoring and adjusting treatments, efforts to engage with others for support as well as financial and time burdens. Many tools to assess treatment burden in different populations were identified through the qualitative data. The most commonly used instrument was the Treatment Burden Questionnaire. Many instruments are available to assess treatment burden, but no one standardized assessment method was identified. Few articles examined approaches to measuring the treatment burden experienced by caregivers. As people live longer with more chronic conditions healthcare providers need to identify patients and caregivers burdened by treatment and engage in approaches to ameliorate treatment burden. A standard and validated assessment method to measure treatment burden in the clinical setting would help to enhance the care of people with multiple chronic conditions, allow comparison of different approaches to reducing treatment burden, and foster ongoing evaluation and monitoring of burden across conditions, patient populations, and time.
AbstractList Abstract Background Many older adults with multiple chronic conditions, particularly those who are functionally impaired, spend considerable time juggling the competing demands of managing their conditions often assisted by caregivers. We examined methods of assessing the treatment burden experienced by this population as a first step to identifying strategies to reduce it. Methods Systematic searches were performed of the peer-reviewed and grey-literature (PubMed, Cochrane library, CINAHL, EMBASE, Web of Science, SCOPUS, New York Academy of Medicine Grey Literature Review, NLM catalog and ProQuest Digital Theses and Dissertations). After title and abstract screening, both qualitative and quantitative articles describing approaches to assessment of treatment burden were included. Results Forty-five articles from the peer reviewed and three items from the grey literature were identified. Most articles (34/48) discussed treatment burden associated with a specific condition. All but one examined the treatment burden experienced by patients and six addressed the treatment burden experienced by caregivers. Qualitative studies revealed many aspects of treatment burden including the burdens of understanding the condition, juggling, monitoring and adjusting treatments, efforts to engage with others for support as well as financial and time burdens. Many tools to assess treatment burden in different populations were identified through the qualitative data. The most commonly used instrument was the Treatment Burden Questionnaire. Conclusions Many instruments are available to assess treatment burden, but no one standardized assessment method was identified. Few articles examined approaches to measuring the treatment burden experienced by caregivers. As people live longer with more chronic conditions healthcare providers need to identify patients and caregivers burdened by treatment and engage in approaches to ameliorate treatment burden. A standard and validated assessment method to measure treatment burden in the clinical setting would help to enhance the care of people with multiple chronic conditions, allow comparison of different approaches to reducing treatment burden, and foster ongoing evaluation and monitoring of burden across conditions, patient populations, and time.
Many older adults with multiple chronic conditions, particularly those who are functionally impaired, spend considerable time juggling the competing demands of managing their conditions often assisted by caregivers. We examined methods of assessing the treatment burden experienced by this population as a first step to identifying strategies to reduce it. Systematic searches were performed of the peer-reviewed and grey-literature (PubMed, Cochrane library, CINAHL, EMBASE, Web of Science, SCOPUS, New York Academy of Medicine Grey Literature Review, NLM catalog and ProQuest Digital Theses and Dissertations). After title and abstract screening, both qualitative and quantitative articles describing approaches to assessment of treatment burden were included. Forty-five articles from the peer reviewed and three items from the grey literature were identified. Most articles (34/48) discussed treatment burden associated with a specific condition. All but one examined the treatment burden experienced by patients and six addressed the treatment burden experienced by caregivers. Qualitative studies revealed many aspects of treatment burden including the burdens of understanding the condition, juggling, monitoring and adjusting treatments, efforts to engage with others for support as well as financial and time burdens. Many tools to assess treatment burden in different populations were identified through the qualitative data. The most commonly used instrument was the Treatment Burden Questionnaire. Many instruments are available to assess treatment burden, but no one standardized assessment method was identified. Few articles examined approaches to measuring the treatment burden experienced by caregivers. As people live longer with more chronic conditions healthcare providers need to identify patients and caregivers burdened by treatment and engage in approaches to ameliorate treatment burden. A standard and validated assessment method to measure treatment burden in the clinical setting would help to enhance the care of people with multiple chronic conditions, allow comparison of different approaches to reducing treatment burden, and foster ongoing evaluation and monitoring of burden across conditions, patient populations, and time.
Background Many older adults with multiple chronic conditions, particularly those who are functionally impaired, spend considerable time juggling the competing demands of managing their conditions often assisted by caregivers. We examined methods of assessing the treatment burden experienced by this population as a first step to identifying strategies to reduce it. Methods Systematic searches were performed of the peer-reviewed and grey-literature (PubMed, Cochrane library, CINAHL, EMBASE, Web of Science, SCOPUS, New York Academy of Medicine Grey Literature Review, NLM catalog and ProQuest Digital Theses and Dissertations). After title and abstract screening, both qualitative and quantitative articles describing approaches to assessment of treatment burden were included. Results Forty-five articles from the peer reviewed and three items from the grey literature were identified. Most articles (34/48) discussed treatment burden associated with a specific condition. All but one examined the treatment burden experienced by patients and six addressed the treatment burden experienced by caregivers. Qualitative studies revealed many aspects of treatment burden including the burdens of understanding the condition, juggling, monitoring and adjusting treatments, efforts to engage with others for support as well as financial and time burdens. Many tools to assess treatment burden in different populations were identified through the qualitative data. The most commonly used instrument was the Treatment Burden Questionnaire. Conclusions Many instruments are available to assess treatment burden, but no one standardized assessment method was identified. Few articles examined approaches to measuring the treatment burden experienced by caregivers. As people live longer with more chronic conditions healthcare providers need to identify patients and caregivers burdened by treatment and engage in approaches to ameliorate treatment burden. A standard and validated assessment method to measure treatment burden in the clinical setting would help to enhance the care of people with multiple chronic conditions, allow comparison of different approaches to reducing treatment burden, and foster ongoing evaluation and monitoring of burden across conditions, patient populations, and time. Keywords: Treatment burden, Multiple chronic conditions, Systematic review, Patient, Caregiver
Many older adults with multiple chronic conditions, particularly those who are functionally impaired, spend considerable time juggling the competing demands of managing their conditions often assisted by caregivers. We examined methods of assessing the treatment burden experienced by this population as a first step to identifying strategies to reduce it. Systematic searches were performed of the peer-reviewed and grey-literature (PubMed, Cochrane library, CINAHL, EMBASE, Web of Science, SCOPUS, New York Academy of Medicine Grey Literature Review, NLM catalog and ProQuest Digital Theses and Dissertations). After title and abstract screening, both qualitative and quantitative articles describing approaches to assessment of treatment burden were included. Forty-five articles from the peer reviewed and three items from the grey literature were identified. Most articles (34/48) discussed treatment burden associated with a specific condition. All but one examined the treatment burden experienced by patients and six addressed the treatment burden experienced by caregivers. Qualitative studies revealed many aspects of treatment burden including the burdens of understanding the condition, juggling, monitoring and adjusting treatments, efforts to engage with others for support as well as financial and time burdens. Many tools to assess treatment burden in different populations were identified through the qualitative data. The most commonly used instrument was the Treatment Burden Questionnaire. Many instruments are available to assess treatment burden, but no one standardized assessment method was identified. Few articles examined approaches to measuring the treatment burden experienced by caregivers. As people live longer with more chronic conditions healthcare providers need to identify patients and caregivers burdened by treatment and engage in approaches to ameliorate treatment burden. A standard and validated assessment method to measure treatment burden in the clinical setting would help to enhance the care of people with multiple chronic conditions, allow comparison of different approaches to reducing treatment burden, and foster ongoing evaluation and monitoring of burden across conditions, patient populations, and time.
Background Many older adults with multiple chronic conditions, particularly those who are functionally impaired, spend considerable time juggling the competing demands of managing their conditions often assisted by caregivers. We examined methods of assessing the treatment burden experienced by this population as a first step to identifying strategies to reduce it. Methods Systematic searches were performed of the peer-reviewed and grey-literature (PubMed, Cochrane library, CINAHL, EMBASE, Web of Science, SCOPUS, New York Academy of Medicine Grey Literature Review, NLM catalog and ProQuest Digital Theses and Dissertations). After title and abstract screening, both qualitative and quantitative articles describing approaches to assessment of treatment burden were included. Results Forty-five articles from the peer reviewed and three items from the grey literature were identified. Most articles (34/48) discussed treatment burden associated with a specific condition. All but one examined the treatment burden experienced by patients and six addressed the treatment burden experienced by caregivers. Qualitative studies revealed many aspects of treatment burden including the burdens of understanding the condition, juggling, monitoring and adjusting treatments, efforts to engage with others for support as well as financial and time burdens. Many tools to assess treatment burden in different populations were identified through the qualitative data. The most commonly used instrument was the Treatment Burden Questionnaire. Conclusions Many instruments are available to assess treatment burden, but no one standardized assessment method was identified. Few articles examined approaches to measuring the treatment burden experienced by caregivers. As people live longer with more chronic conditions healthcare providers need to identify patients and caregivers burdened by treatment and engage in approaches to ameliorate treatment burden. A standard and validated assessment method to measure treatment burden in the clinical setting would help to enhance the care of people with multiple chronic conditions, allow comparison of different approaches to reducing treatment burden, and foster ongoing evaluation and monitoring of burden across conditions, patient populations, and time.
Many older adults with multiple chronic conditions, particularly those who are functionally impaired, spend considerable time juggling the competing demands of managing their conditions often assisted by caregivers. We examined methods of assessing the treatment burden experienced by this population as a first step to identifying strategies to reduce it.BACKGROUNDMany older adults with multiple chronic conditions, particularly those who are functionally impaired, spend considerable time juggling the competing demands of managing their conditions often assisted by caregivers. We examined methods of assessing the treatment burden experienced by this population as a first step to identifying strategies to reduce it.Systematic searches were performed of the peer-reviewed and grey-literature (PubMed, Cochrane library, CINAHL, EMBASE, Web of Science, SCOPUS, New York Academy of Medicine Grey Literature Review, NLM catalog and ProQuest Digital Theses and Dissertations). After title and abstract screening, both qualitative and quantitative articles describing approaches to assessment of treatment burden were included.METHODSSystematic searches were performed of the peer-reviewed and grey-literature (PubMed, Cochrane library, CINAHL, EMBASE, Web of Science, SCOPUS, New York Academy of Medicine Grey Literature Review, NLM catalog and ProQuest Digital Theses and Dissertations). After title and abstract screening, both qualitative and quantitative articles describing approaches to assessment of treatment burden were included.Forty-five articles from the peer reviewed and three items from the grey literature were identified. Most articles (34/48) discussed treatment burden associated with a specific condition. All but one examined the treatment burden experienced by patients and six addressed the treatment burden experienced by caregivers. Qualitative studies revealed many aspects of treatment burden including the burdens of understanding the condition, juggling, monitoring and adjusting treatments, efforts to engage with others for support as well as financial and time burdens. Many tools to assess treatment burden in different populations were identified through the qualitative data. The most commonly used instrument was the Treatment Burden Questionnaire.RESULTSForty-five articles from the peer reviewed and three items from the grey literature were identified. Most articles (34/48) discussed treatment burden associated with a specific condition. All but one examined the treatment burden experienced by patients and six addressed the treatment burden experienced by caregivers. Qualitative studies revealed many aspects of treatment burden including the burdens of understanding the condition, juggling, monitoring and adjusting treatments, efforts to engage with others for support as well as financial and time burdens. Many tools to assess treatment burden in different populations were identified through the qualitative data. The most commonly used instrument was the Treatment Burden Questionnaire.Many instruments are available to assess treatment burden, but no one standardized assessment method was identified. Few articles examined approaches to measuring the treatment burden experienced by caregivers. As people live longer with more chronic conditions healthcare providers need to identify patients and caregivers burdened by treatment and engage in approaches to ameliorate treatment burden. A standard and validated assessment method to measure treatment burden in the clinical setting would help to enhance the care of people with multiple chronic conditions, allow comparison of different approaches to reducing treatment burden, and foster ongoing evaluation and monitoring of burden across conditions, patient populations, and time.CONCLUSIONSMany instruments are available to assess treatment burden, but no one standardized assessment method was identified. Few articles examined approaches to measuring the treatment burden experienced by caregivers. As people live longer with more chronic conditions healthcare providers need to identify patients and caregivers burdened by treatment and engage in approaches to ameliorate treatment burden. A standard and validated assessment method to measure treatment burden in the clinical setting would help to enhance the care of people with multiple chronic conditions, allow comparison of different approaches to reducing treatment burden, and foster ongoing evaluation and monitoring of burden across conditions, patient populations, and time.
ArticleNumber 262
Audience Academic
Author Sheehan, Orla C.
Li, Lingsheng
Leff, Bruce
Fathi, Roya
Saliba, Debra
Boyd, Cynthia M.
Garrigues, Sarah K.
Ritchie, Christine S.
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BackLink https://www.ncbi.nlm.nih.gov/pubmed/31604424$$D View this record in MEDLINE/PubMed
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Issue 1
Keywords Patient
Systematic review
Caregiver
Multiple chronic conditions
Treatment burden
Language English
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Snippet Many older adults with multiple chronic conditions, particularly those who are functionally impaired, spend considerable time juggling the competing demands of...
Background Many older adults with multiple chronic conditions, particularly those who are functionally impaired, spend considerable time juggling the competing...
Abstract Background Many older adults with multiple chronic conditions, particularly those who are functionally impaired, spend considerable time juggling the...
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StartPage 262
SubjectTerms Activities of daily living
Care and treatment
Caregiver
Caregivers
Chronic diseases
Chronic illnesses
Citation management software
Clinical medicine
Elderly
Geriatrics
Health aspects
Health care policy
Literature reviews
Multiple chronic conditions
Older people
Patient
Patients
Public health
Questionnaires
Services
Systematic review
Treatment burden
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Title A systematic literature review of the assessment of treatment burden experienced by patients and their caregivers
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