More care needed for cancer caregivers

IF 503.1 1区 医学 Q1 ONCOLOGY CA: A Cancer Journal for Clinicians Pub Date : 2024-01-19 DOI:10.3322/caac.21826
Mike Fillon
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A new observational study has confirmed that caregivers’ needs are often overlooked, making them vulnerable.</p><p>The study by researchers at Wake Forest School of Medicine in Winston-Salem, North Carolina, appears in the <i>Journal of the National Cancer Institute</i> (doi:10.1093/jnci/djad198).</p><p>According to study authors, what prompted the creation of this study was the growing recognition that there was a need for better integration of caregivers into patient-centered cancer care, but to do so research was needed to evaluate the most pressing caregiving burdens and to develop strategies to ease these burdens. They noted that caregivers’ experience symptoms of at least moderate depression, anxiety, worry, and stress that can hinder their ability to help with the patient’s coping and functioning. “The practice of clinic-level distress screening may be one opportunity to improve the assessment and management of caregiver concerns,” they wrote.</p><p>For the study, the researchers worked with Wake Forest University’s NCI Community Oncology Research Program (WF NCORP) Research Base in Winston-Salem, North Carolina. NCORPs are part of a network for clinical trials and cancer care delivery research in community oncology clinics nationwide. “There are approximately 1,000 distinct sub-affiliates within 46 NCORP affiliates, many of which cluster together in organizational units or practice groups with common resources, providers, and operations,” they wrote. Data collection took place between January 2019 and June 2020.</p><p>The surveys were given to the staff member identified as the most knowledgeable about supportive care services, distress screening, and management for oncology patients at their institution. For this study, the researchers referred to them as supportive care leaders (SCLs.)</p><p>Key factors the researchers collected included the number of oncology providers, academic affiliations, the practice setting (in-patient, outpatient, freestanding outpatient, or private clinic) whether it was single or multi-specialty group, hospital affiliations, patient demographics (including age, sex, race, and ethnicity), and whether patients were enrolled in Medicaid and/or Medicare. Factors specific for caregiver included whether there was an existing system to identify a primary caregiver, whether or not they attended medical appointments with the patient.</p><p>If the primary caregivers were known, when and at which settings they attended, such as hospital-wide in-patient, medical oncology outpatient, radiation oncology outpatient, surgical oncology outpatient, palliative care, hospice, or other, was also collected. Also noted were where they attended with the patients, at diagnosis, during treatment, at the end of treatment or discharge, or during referral to other services, such as palliative care or hospice.</p><p>Those answering the survey were also asked if they ever screened for distress in caregivers. If they did, details such as when they were screened, and whether they attended patient appointments or not were also collected. Finally, SCLs were also asked to identify patients for their level of distress based on their specific type of cancer.</p><p>Of those who responded to the survey, 37 were social workers, 22 were either practice administrators, clinic manager, or staff managers, and 15 were psychologists or other mental health professionals. Of the 133 practice groups, 91 offered inpatient services, 91 offered an outpatient clinic on a hospital campus, and 64 offered a freestanding outpatient clinic or private group/practice. Only nine of the practices had an academic affiliation, while 40 identified as a safety net hospital and 16 were affiliated with a critical access hospital.</p><p>One hundred eleven practice groups (83.5%) provided answers to the caregiver questions for the study. A majority of respondents (64.9%; 72 of the 111) reported that their practices included identification and documentation of informal caregivers, with 63.8% of the 72 practices saying they recorded the information in their electronic health records. However, while 92.5% said that they screen patients, only 16% routinely screen caregivers for distress.</p><p>In addition, although the researchers reported that distress management strategies for patients and caregivers were readily available, only 12.6% identified, screened, and had offered at least one referral strategy for caregivers reporting distress while 90.6% of centers routinely screened and had at least one referral strategy for the patients.</p><p>The most commonly used caregiver distress screening tool was a single-item distress scale ranging from 0–10. The second most common tool was the National Comprehensive Cancer Network (NCCN) Distress Thermometer and Problem List, a distress rating scale with follow-up questions on whether emotional or physical maladies are sources of distress, and the Patient Health Questionnaire (PHQ), a multipurpose instrument for screening, diagnosing, monitoring, and measuring depression severity.</p><p>The most common strategies for managing caregivers with distress included referring them to an onsite counselor or mental health professional, to a suitable support group, and simply offering aid information such as reading material and websites.</p><p>Lead study author, Chandylen Nightingale, PhD, MPH, an assistant professor in the department of social sciences and health policy at the Wake Forest University School of Medicine in Winston Salem, North Carolina, says that the study breaks new ground by providing important systems- level data that were previously lacking and can help cancer centers implement strategies for greater caregiver needs in the future. “This is the first study to show national statistics using NCORP clinics how many practice groups are screening caregivers for distress. 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But clinicians sometimes forget that the caregiver is also going through this illness experience,” she says. “It’s happening to them too, and disrupts their life in enormous ways.”</p><p>Dr Nightingale says that improving caregiver distress screening does not have to be a burdensome or complex system. for example, a 0–10 “thermometer” scale with one question could be a starting point. “We clearly have a lot of work to do with identifying caregivers who are distressed so that we can connect them with services they need,” she says. “It will be important to have collaboration between our clinicians and researchers so that we can design caregiver programs at the system and individual levels that provide support for this vulnerable population.”</p>","PeriodicalId":137,"journal":{"name":"CA: A Cancer Journal for Clinicians","volume":null,"pages":null},"PeriodicalIF":503.1000,"publicationDate":"2024-01-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.3322/caac.21826","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"CA: A Cancer Journal for Clinicians","FirstCategoryId":"3","ListUrlMain":"https://onlinelibrary.wiley.com/doi/10.3322/caac.21826","RegionNum":1,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q1","JCRName":"ONCOLOGY","Score":null,"Total":0}
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Abstract

W then ophthalmologist and co-founder of Glaucomflecken LLC, William Flanary, MD, suffered two separate, unrelated bouts of cancer and then cardiac arrest, his wife served as his primary caregiver. While Dr Flanary received the medical attention he needed, Kristin Flanary, also known as Lady Glaucomflecken, co-founder and marketing director of Glaucomflecken LLC in Portland, Oregon, was left frazzled and worn down. “We discovered there’s a big discrepancy between how closely we look at how patients are doing in terms of distress versus how closely we look at how caregivers are doing.”

She is not alone in her view. It is well-accepted that cancer causes many physical, emotional, and financial burdens not only for patients, but for their caregivers as well. A new observational study has confirmed that caregivers’ needs are often overlooked, making them vulnerable.

The study by researchers at Wake Forest School of Medicine in Winston-Salem, North Carolina, appears in the Journal of the National Cancer Institute (doi:10.1093/jnci/djad198).

According to study authors, what prompted the creation of this study was the growing recognition that there was a need for better integration of caregivers into patient-centered cancer care, but to do so research was needed to evaluate the most pressing caregiving burdens and to develop strategies to ease these burdens. They noted that caregivers’ experience symptoms of at least moderate depression, anxiety, worry, and stress that can hinder their ability to help with the patient’s coping and functioning. “The practice of clinic-level distress screening may be one opportunity to improve the assessment and management of caregiver concerns,” they wrote.

For the study, the researchers worked with Wake Forest University’s NCI Community Oncology Research Program (WF NCORP) Research Base in Winston-Salem, North Carolina. NCORPs are part of a network for clinical trials and cancer care delivery research in community oncology clinics nationwide. “There are approximately 1,000 distinct sub-affiliates within 46 NCORP affiliates, many of which cluster together in organizational units or practice groups with common resources, providers, and operations,” they wrote. Data collection took place between January 2019 and June 2020.

The surveys were given to the staff member identified as the most knowledgeable about supportive care services, distress screening, and management for oncology patients at their institution. For this study, the researchers referred to them as supportive care leaders (SCLs.)

Key factors the researchers collected included the number of oncology providers, academic affiliations, the practice setting (in-patient, outpatient, freestanding outpatient, or private clinic) whether it was single or multi-specialty group, hospital affiliations, patient demographics (including age, sex, race, and ethnicity), and whether patients were enrolled in Medicaid and/or Medicare. Factors specific for caregiver included whether there was an existing system to identify a primary caregiver, whether or not they attended medical appointments with the patient.

If the primary caregivers were known, when and at which settings they attended, such as hospital-wide in-patient, medical oncology outpatient, radiation oncology outpatient, surgical oncology outpatient, palliative care, hospice, or other, was also collected. Also noted were where they attended with the patients, at diagnosis, during treatment, at the end of treatment or discharge, or during referral to other services, such as palliative care or hospice.

Those answering the survey were also asked if they ever screened for distress in caregivers. If they did, details such as when they were screened, and whether they attended patient appointments or not were also collected. Finally, SCLs were also asked to identify patients for their level of distress based on their specific type of cancer.

Of those who responded to the survey, 37 were social workers, 22 were either practice administrators, clinic manager, or staff managers, and 15 were psychologists or other mental health professionals. Of the 133 practice groups, 91 offered inpatient services, 91 offered an outpatient clinic on a hospital campus, and 64 offered a freestanding outpatient clinic or private group/practice. Only nine of the practices had an academic affiliation, while 40 identified as a safety net hospital and 16 were affiliated with a critical access hospital.

One hundred eleven practice groups (83.5%) provided answers to the caregiver questions for the study. A majority of respondents (64.9%; 72 of the 111) reported that their practices included identification and documentation of informal caregivers, with 63.8% of the 72 practices saying they recorded the information in their electronic health records. However, while 92.5% said that they screen patients, only 16% routinely screen caregivers for distress.

In addition, although the researchers reported that distress management strategies for patients and caregivers were readily available, only 12.6% identified, screened, and had offered at least one referral strategy for caregivers reporting distress while 90.6% of centers routinely screened and had at least one referral strategy for the patients.

The most commonly used caregiver distress screening tool was a single-item distress scale ranging from 0–10. The second most common tool was the National Comprehensive Cancer Network (NCCN) Distress Thermometer and Problem List, a distress rating scale with follow-up questions on whether emotional or physical maladies are sources of distress, and the Patient Health Questionnaire (PHQ), a multipurpose instrument for screening, diagnosing, monitoring, and measuring depression severity.

The most common strategies for managing caregivers with distress included referring them to an onsite counselor or mental health professional, to a suitable support group, and simply offering aid information such as reading material and websites.

Lead study author, Chandylen Nightingale, PhD, MPH, an assistant professor in the department of social sciences and health policy at the Wake Forest University School of Medicine in Winston Salem, North Carolina, says that the study breaks new ground by providing important systems- level data that were previously lacking and can help cancer centers implement strategies for greater caregiver needs in the future. “This is the first study to show national statistics using NCORP clinics how many practice groups are screening caregivers for distress. These data highlight a significant gap in how we are supporting caregivers and can also serve as a baseline to monitor progress moving forward.”

Jennifer A. Schrack, PhD, a professor and the director of the Center on Aging & Health at Johns Hopkins Bloomberg School of Public Health in Baltimore, Maryland, says that as the cancer population ages, caregiving is an increasingly important area of research. “What’s more, screening caregivers for distress is important to helping maintain patient health and safety. Distress management strategies are under-communicated and thus are likely underutilized,” she says. “Identifying patient caregivers and openly communicating with them about potential distress may enhance uptake … or identify barriers to why (available) resources are not being used.”

Kristin Flanary, who was formally trained in cognitive neuroscience and social psychology before embarking on her career in marketing and communications, has become a vocal advocate for greater caregiver support, noting that their needs are a “blind spot” of the overstretched health care system that needs to be addressed. “Naturally, the patient gets most of the attention—and rightly so, but I do use the term ‘co-patient’ and ‘co-survivor’ for people who are closely linked to the patient. But clinicians sometimes forget that the caregiver is also going through this illness experience,” she says. “It’s happening to them too, and disrupts their life in enormous ways.”

Dr Nightingale says that improving caregiver distress screening does not have to be a burdensome or complex system. for example, a 0–10 “thermometer” scale with one question could be a starting point. “We clearly have a lot of work to do with identifying caregivers who are distressed so that we can connect them with services they need,” she says. “It will be important to have collaboration between our clinicians and researchers so that we can design caregiver programs at the system and individual levels that provide support for this vulnerable population.”

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癌症护理人员需要更多关爱
威廉-弗拉纳里(William Flanary)是一位眼科医生,也是 Glaucomflecken LLC 公司的创始人之一,他先后两次罹患癌症和心脏骤停,他的妻子是他的主要照顾者。弗拉纳里医生得到了所需的治疗,而俄勒冈州波特兰市 Glaucomflecken LLC 的共同创始人兼营销总监、人称 Glaucomflecken 夫人的克里斯汀-弗拉纳里却焦头烂额、心力交瘁。"我们发现,在密切关注病人的痛苦程度与密切关注护理人员的痛苦程度之间,存在着很大的差异。"她并不是唯一这样认为的人。众所周知,癌症不仅会给患者带来身体、精神和经济上的负担,也会给他们的护理人员带来负担。北卡罗来纳州温斯顿-塞勒姆维克森林医学院研究人员的这项研究发表在《美国国家癌症研究所杂志》上(doi:10.1093/jnci/djad198)。据该研究的作者称,促使他们开展这项研究的原因是,人们越来越认识到有必要将护理人员更好地融入以病人为中心的癌症护理中,但要做到这一点,需要开展研究来评估最紧迫的护理负担,并制定减轻这些负担的策略。他们指出,护理人员至少会出现中度抑郁、焦虑、担忧和压力等症状,这可能会妨碍他们帮助病人应对和发挥功能的能力。"在这项研究中,研究人员与维克森林大学位于北卡罗来纳州温斯顿-塞勒姆的 NCI 社区肿瘤研究项目(WF NCORP)研究基地进行了合作。NCORP 是全国社区肿瘤诊所临床试验和癌症护理服务研究网络的一部分。"他们写道:"在 46 个 NCORP 附属机构中,大约有 1000 个不同的子附属机构,其中许多都聚集在具有共同资源、提供者和运营的组织单位或实践小组中。数据收集工作于 2019 年 1 月至 2020 年 6 月期间进行。调查对象是被认定为最了解所在机构肿瘤患者支持性护理服务、痛苦筛查和管理的工作人员。在本研究中,研究人员将他们称为支持性护理领导者(SCLs)。研究人员收集的关键因素包括肿瘤服务提供者的数量、学术隶属关系、执业环境(住院、门诊、独立门诊或私人诊所)是单一专业组还是多专业组、医院隶属关系、患者人口统计数据(包括年龄、性别、种族和民族)以及患者是否加入了医疗补助和/或医疗保险。如果知道主要照护者,则还要收集他们就诊的时间和地点,如全院住院患者、肿瘤内科门诊患者、肿瘤放射科门诊患者、肿瘤外科门诊患者、姑息治疗患者、临终关怀患者或其他患者。此外,还记录了他们在诊断时、治疗期间、治疗结束或出院时、或转诊至姑息治疗或临终关怀等其他服务机构时与患者一起就诊的地点。如果曾进行过筛查,还收集了筛查时间、是否参加患者预约等详细信息。最后,SCL 还被要求根据癌症的具体类型来确定患者的痛苦程度。在对调查做出回复的人员中,37 人是社会工作者,22 人是实践管理者、诊所经理或员工经理,15 人是心理学家或其他心理健康专业人士。在 133 个实践小组中,91 个提供住院服务,91 个在医院园区内提供门诊,64 个提供独立门诊或私人小组/实践。只有 9 家医疗机构与学术机构有关联,40 家医疗机构被认定为安全网医院,16 家医疗机构隶属于重症监护医院。111 家医疗机构(83.5%)回答了护理人员提出的问题。大多数受访者(64.9%;111 个受访者中的 72 个)表示,他们的实践包括识别和记录非正式护理人员,72 个实践中的 63.8% 表示他们在电子健康记录中记录了这些信息。然而,虽然 92.5% 的受访者表示他们会对患者进行筛查,但只有 16% 的受访者会对护理人员进行常规的痛苦筛查。
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来源期刊
CiteScore
873.20
自引率
0.10%
发文量
51
审稿时长
1 months
期刊介绍: CA: A Cancer Journal for Clinicians" has been published by the American Cancer Society since 1950, making it one of the oldest peer-reviewed journals in oncology. It maintains the highest impact factor among all ISI-ranked journals. The journal effectively reaches a broad and diverse audience of health professionals, offering a unique platform to disseminate information on cancer prevention, early detection, various treatment modalities, palliative care, advocacy matters, quality-of-life topics, and more. As the premier journal of the American Cancer Society, it publishes mission-driven content that significantly influences patient care.
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