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Measuring the quality of palliative care and supportive oncology: principles and practice. 衡量姑息治疗和肿瘤学支持的质量:原则和实践。
Pub Date : 2013-12-01 DOI: 10.12788/j.suponc.0017
Sydney M Dy

Oncology quality measurement programs should include measures in key domains of palliative care and supportive oncology. This article describes an approach to quality measurement in these areas including the key steps of defining the quality measurement goal; identifying stakeholders and audiences; defining the population and setting (including potential characteristics of interest, such as specific conditions or disparities); and choosing the domain, target, and steps in the process of care, such as assessment and treatment. Other key steps include choosing or adapting measures that have been evaluated in other settings or are in widespread use; identifying data sources or collection needs; and considering issues of scientific acceptability, such as evidence to support process-outcome relationships. Other quality measurement considerations include the challenges of measurement, particularly in important domains such as communication and spiritual care, variation in patient preferences, or inconsistent documentation. In addition, potential unintended consequences, such as measurement burden and overemphasis of checklist care, may reduce patient-centeredness and attention to important patient concerns not addressed by quality measures.

肿瘤学质量测量项目应包括姑息治疗和支持性肿瘤学关键领域的测量。本文描述了在这些领域进行质量度量的方法,包括定义质量度量目标的关键步骤;确定利益相关者和受众;界定人口和环境(包括潜在的兴趣特征,如具体情况或差异);选择领域,目标,护理过程中的步骤,比如评估和治疗。其他关键步骤包括选择或调整在其他环境中得到评价或广泛使用的措施;确定数据来源或收集需求;并考虑科学可接受性问题,例如支持过程-结果关系的证据。其他质量测量考虑包括测量的挑战,特别是在重要领域,如沟通和精神护理,患者偏好的变化,或不一致的文件。此外,潜在的意想不到的后果,如测量负担和过分强调检查表护理,可能会降低以患者为中心的意识和对质量措施未解决的重要患者问题的关注。
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引用次数: 9
Monitoring of health-related quality of life and symptoms in prostate cancer survivors: a randomized trial. 监测前列腺癌幸存者的健康相关生活质量和症状:一项随机试验
Pub Date : 2013-12-01 DOI: 10.12788/j.suponc.0013
Kimberly M Davis, David Dawson, Scott Kelly, Sara Red, Sofiya Penek, John Lynch, Sean Collins, Barlow Lynch, Michael Porrazzo, Michael Bass, Kathryn L Taylor

Background: Routine symptom and health-related quality of life (HRQOL) assessments can engage patients, give provider feedback, and improve doctor/patient communication.

Objective: We compared the impact of a technology-assisted symptom monitoring system versus usual care on HRQOL and doctor/patient communication in early-stage prostate cancer (PCa) survivors.

Methods: Men (N = 94) were on average 62-years old, mostly African American (AA; 61.7%), and 10-19 months post-treatment. They were randomized to symptom monitoring plus feedback (SM + F; n = 49) or usual care (UC; n = 45). SM+F participants completed a 12-item telephoneassisted monitoring intervention. All participants completed a baseline and 2 follow-up interviews.

Results: Among the SM+F participants, perceptions of the monitoring system were positive: 97.1% endorsed it as easy/very easy to use and 85% felt all patients could benefit from it. At baseline, men reported favorable general and cancer-specific HRQOL and doctor/patient communication, but poorer urinary and sexual function. Although there was no overall impact of the intervention, post hoc exploratory analyses indicated that among AA men, those who received SM+F improved relative to UC on doctor/patient communication (P < .05), general HRQOL (P < .06), and sexual function (P < .05).

Limitations: Variability in survivor follow-up care, limited access to eligible participants, and minimal physician training in the use of reports likely decreased physician investment.

Conclusion: Overall, PCa survivors were receptive to this monitoring system. Exploratory analyses suggest that this technology-assisted monitoring system may be of particular benefit to African American men. Additional studies with larger samples, more intervention time-points, and increased physician training are needed to strengthen the intervention's impact.

背景:常规症状和健康相关生活质量(HRQOL)评估可以吸引患者,给予提供者反馈,并改善医患沟通。目的:比较技术辅助症状监测系统与常规护理对早期前列腺癌(PCa)幸存者HRQOL和医患沟通的影响。方法:男性94例,平均年龄62岁,多为非洲裔美国人(AA;61.7%),治疗后10-19个月。患者随机分为症状监测加反馈组(SM + F;n = 49)或常规护理(UC;N = 45)。SM+F参与者完成了12项电话辅助监测干预。所有参与者完成了一次基线和两次随访访谈。结果:在SM+F参与者中,对监测系统的看法是积极的:97.1%的人认为它容易/非常容易使用,85%的人认为所有患者都可以从中受益。在基线时,男性报告了良好的一般和癌症特异性HRQOL和医患沟通,但较差的泌尿和性功能。虽然没有干预的总体影响,但事后探索性分析表明,在AA男性中,接受SM+F的患者在医患沟通(P < 0.05)、总体HRQOL (P < 0.05)和性功能(P < 0.05)方面相对于UC有改善。局限性:幸存者随访护理的可变性,获得符合条件的参与者的机会有限,以及使用报告的医生培训很少,可能会减少医生的投资。结论:总体而言,前列腺癌幸存者接受该监测系统。探索性分析表明,这种技术辅助监测系统可能对非洲裔美国人特别有益。进一步的研究需要更大的样本,更多的干预时间点,并增加医生培训,以加强干预的影响。
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引用次数: 13
Illness perceptions matter: understanding quality of life and advanced illness behaviors in female patients with late-stage cancer. 疾病认知很重要:了解女性晚期癌症患者的生活质量和晚期疾病行为。
Pub Date : 2013-12-01 DOI: 10.12788/j.suponc.0014
Andrea R Croom, Heidi A Hamann, Siobhan M Kehoe, Elizabeth Paulk, Deborah J Wiebe

Background: Patients with late-stage cancer are living longer, making it important to understand factors that contribute to maintaining quality of life (QOL) and completing advanced illness behaviors (eg, advance directives).

Objective: To examine whether illness perceptions-the cognitive beliefs that patients form about their cancer-may be more important guides to adjustment than clinical characteristics of the cancer.

Methods: In a cross-sectional study, 105 female patients diagnosed with stage III (n = 66) or IV (n = 39) breast (n = 44), gynecological (n = 38), or lung (n = 23) cancer completed self-report measures of illness perceptions, QOL, and advanced illness behaviors. Clinical data was obtained from medical records.

Results: Despite modest associations, patients' beliefs about the cancer were clearly unique from the clinical characteristics of the cancer. Illness perception variables accounted for a large portion of the variance (PS < .01) for QOL and advanced illness behaviors, whereas clinical characteristics did not. QOL scores were predicted by patients' reports of experiencing more cancer related symptoms (ie, illness identity), believing that their cancer is central to their self-identity, and higher income. Higher completion of advanced illness behaviors was predicted by higher income, the cancer being recurrent, and participants perceiving their cancer as more severe but also more understandable.

Limitations: This study was limited by a cross-sectional design, small sample size, and focus on female patients.

Conclusion: Addressing patients' beliefs about their cancer diagnosis may provide important targets for intervention to improve QOL and illness behaviors in patients with late-stage cancer.

背景:晚期癌症患者的寿命更长,因此了解有助于维持生活质量(QOL)和完成晚期疾病行为(如预先指示)的因素非常重要。目的:探讨疾病感知-患者对癌症形成的认知信念-是否比癌症的临床特征更能指导患者适应。方法:在一项横断面研究中,105名诊断为III期(n = 66)或IV期(n = 39)乳腺癌(n = 44)、妇科(n = 38)或肺癌(n = 23)的女性患者完成了疾病认知、生活质量和晚期疾病行为的自我报告。临床资料来源于医疗记录。结果:尽管有一定的关联,但患者对癌症的信念显然与癌症的临床特征不同。疾病感知变量占生活质量和晚期疾病行为方差的很大一部分(PS < 0.01),而临床特征没有。生活质量评分是通过患者报告经历更多癌症相关症状(即疾病认同),认为癌症是他们自我认同的核心,以及更高的收入来预测的。收入越高,癌症复发,参与者认为他们的癌症更严重,但也更容易理解,这些都预示着晚期疾病行为的完成程度越高。局限性:本研究受限于横断面设计,样本量小,并且主要针对女性患者。结论:改善患者对癌症诊断的信念可能是改善晚期癌症患者生活质量和疾病行为的重要干预目标。
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引用次数: 11
Listening to the voice of patients. 倾听病人的声音。
Pub Date : 2013-12-01 DOI: 10.12788/j.suponc.0027
Jamie Hayden Von Roenn
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引用次数: 0
Whole brain radiotherapy for poor prognosis patients with brain metastases: predictably poor results. 预后不良脑转移患者的全脑放疗:可预见的不良结果。
Pub Date : 2013-12-01 DOI: 10.12788/j.suponc.0006
Neil C Estabrook, Stephen T Lutz, Cynthia S Johnson, Mark A Henderson

Background: Patients with brain metastases from solid tumors can be subdivided by characteristics into separate prognostic groups, such as the Radiation Therapy Oncology Group's Recursive Partitioning Analysis (RPA) or the Graded Prognostic Assessment (GPA). At our institution, patients falling into the poorest prognostic groups are often treated with whole brain radiotherapy (WBRT).

Objective: To determine if observed survival of poor prognosis patients treated with WBRT for brain metastases at our institution matches the survival predicted by RPA and GPA prognostic indices.

Methods: The charts of 101 consecutive patients with newly diagnosed brain metastases from solid tumors who received WBRT were retrospectively reviewed. We calculated each patient's RPA and GPA and compiled treatment and survival data. Observed median survival was compared to that predicted by the RPA and GPA prognostic indices.

Results: RPA III patients (n = 25) had a median survival of 2.4 months in our study. GPA 0.0-1.0 patients (n = 35) had a median survival of 2.4 months in our study. These values did not vary significantly from those predicted by the respective indices.

Limitations: This is a retrospective analysis and subject to selection bias.

Conclusion: Given the delivery time for WBRT and the potential side effects associated with the treatment, the predictably short overall survival in poor prognosis patients calls into question the value of WBRT in this patient subgroup.

背景:实体瘤脑转移患者可以根据特征细分为单独的预后组,如放射治疗肿瘤学组的递归划分分析(RPA)或分级预后评估(GPA)。在我们的机构,属于预后最差群体的患者经常接受全脑放疗(WBRT)。目的:确定在我院接受WBRT治疗的脑转移不良预后患者的观察生存是否与RPA和GPA预后指标预测的生存相匹配。方法:回顾性分析101例新诊断的实体瘤脑转移患者行WBRT治疗的临床资料。我们计算每位患者的RPA和GPA,并汇编治疗和生存数据。将观察到的中位生存期与RPA和GPA预后指标预测的中位生存期进行比较。结果:在我们的研究中,RPA III型患者(n = 25)的中位生存期为2.4个月。在我们的研究中,GPA为0.0-1.0的患者(n = 35)的中位生存期为2.4个月。这些值与各自指数的预测值没有显著差异。局限性:这是一项回顾性分析,可能存在选择偏差。结论:考虑到WBRT的给药时间和与治疗相关的潜在副作用,在预后不良的患者中可预见的较短的总生存期使WBRT在该患者亚组中的价值受到质疑。
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引用次数: 4
Characterization of skin reactions and pain reported by patients receiving radiation therapy for cancer at different sites. 在不同部位接受癌症放射治疗的患者报告的皮肤反应和疼痛的特征。
Pub Date : 2013-12-01 DOI: 10.12788/j.suponc.0009
Jennifer S Gewandter, Joanna Walker, Charles E Heckler, Gary R Morrow, Julie L Ryan

Background: Skin reactions and pain are commonly reported side effects of radiation therapy (RT).

Objective: To characterize RT-induced symptoms according to treatment site subgroups and identify skin symptoms that correlate with pain.

Methods: A self-report survey-adapted from the MD Anderson Symptom Inventory and the McGill Pain Questionnaire--assessed RT-induced skin problems, pain, and specific skin symptoms. Wilcoxon Sign Ranked tests compared mean severity or pre- and post-RT pain and skin problems within each RT-site subgroup. Multiple linear regression (MLR) investigated associations between skin symptoms and pain.

Results: Survey respondents (N = 106) were 58% female and on average 64 years old. RT sites included lung, breast, lower abdomen, head/neck/brain, and upper abdomen. Only patients receiving breast RT reported significant increases in treatment site pain and skin problems (P < or = .007). Patients receiving head/neck/brain RT reported increased skin problems (P < .0009). MLR showed that post-RT skin tenderness and tightness were most strongly associated with post-RT pain (P = .066 and P = .122, respectively).

Limitations: Small sample size, exploratory analyses, and nonvalidated measure.

Conclusions: Only patients receiving breast RT reported significant increases in pain and skin problems at the RT site while patients receiving head/neck/brain RT had increased skin problems but not pain. These findings suggest that the severity of skin problems is not the only factor that contributes to pain and that interventions should be tailored to specifically target pain at the RT site, possibly by targeting tenderness and tightness. These findings should be confirmed in a larger sampling of RT patients.

背景:皮肤反应和疼痛是放射治疗(RT)的常见副作用。目的:根据治疗部位亚组来表征rt诱导的症状,并识别与疼痛相关的皮肤症状。方法:一项自我报告调查——改编自MD安德森症状量表和麦吉尔疼痛问卷——评估了rt诱导的皮肤问题、疼痛和特定皮肤症状。Wilcoxon Sign分级试验比较了每个rt部位亚组中rt前后疼痛和皮肤问题的平均严重程度。多元线性回归(MLR)研究皮肤症状和疼痛之间的关系。结果:调查对象106人,女性占58%,平均年龄64岁。RT部位包括肺、乳腺、下腹部、头/颈/脑和上腹部。只有接受乳房放疗的患者报告治疗部位疼痛和皮肤问题显著增加(P <或= .007)。接受头颈脑放疗的患者报告皮肤问题增加(P < .0009)。MLR显示,放疗后皮肤压痛和紧绷与放疗后疼痛最密切相关(P = 0.066和P = 0.122)。局限性:样本量小,探索性分析,未验证测量。结论:只有接受乳房放射治疗的患者报告了放射治疗部位疼痛和皮肤问题的显著增加,而接受头部/颈部/脑部放射治疗的患者皮肤问题增加,但没有疼痛。这些发现表明,皮肤问题的严重程度并不是导致疼痛的唯一因素,干预措施应该专门针对RT部位的疼痛,可能是针对压痛和紧绷。这些发现应该在更大的RT患者样本中得到证实。
{"title":"Characterization of skin reactions and pain reported by patients receiving radiation therapy for cancer at different sites.","authors":"Jennifer S Gewandter,&nbsp;Joanna Walker,&nbsp;Charles E Heckler,&nbsp;Gary R Morrow,&nbsp;Julie L Ryan","doi":"10.12788/j.suponc.0009","DOIUrl":"https://doi.org/10.12788/j.suponc.0009","url":null,"abstract":"<p><strong>Background: </strong>Skin reactions and pain are commonly reported side effects of radiation therapy (RT).</p><p><strong>Objective: </strong>To characterize RT-induced symptoms according to treatment site subgroups and identify skin symptoms that correlate with pain.</p><p><strong>Methods: </strong>A self-report survey-adapted from the MD Anderson Symptom Inventory and the McGill Pain Questionnaire--assessed RT-induced skin problems, pain, and specific skin symptoms. Wilcoxon Sign Ranked tests compared mean severity or pre- and post-RT pain and skin problems within each RT-site subgroup. Multiple linear regression (MLR) investigated associations between skin symptoms and pain.</p><p><strong>Results: </strong>Survey respondents (N = 106) were 58% female and on average 64 years old. RT sites included lung, breast, lower abdomen, head/neck/brain, and upper abdomen. Only patients receiving breast RT reported significant increases in treatment site pain and skin problems (P < or = .007). Patients receiving head/neck/brain RT reported increased skin problems (P < .0009). MLR showed that post-RT skin tenderness and tightness were most strongly associated with post-RT pain (P = .066 and P = .122, respectively).</p><p><strong>Limitations: </strong>Small sample size, exploratory analyses, and nonvalidated measure.</p><p><strong>Conclusions: </strong>Only patients receiving breast RT reported significant increases in pain and skin problems at the RT site while patients receiving head/neck/brain RT had increased skin problems but not pain. These findings suggest that the severity of skin problems is not the only factor that contributes to pain and that interventions should be tailored to specifically target pain at the RT site, possibly by targeting tenderness and tightness. These findings should be confirmed in a larger sampling of RT patients.</p>","PeriodicalId":75116,"journal":{"name":"The journal of supportive oncology","volume":"11 4","pages":"183-9"},"PeriodicalIF":0.0,"publicationDate":"2013-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4502437/pdf/nihms703277.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"32189739","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 11
To treat or not to treat: balancing therapeutic outcomes, toxicity and quality of life in patients with recurrent and/or metastatic head and neck cancer. 治疗或不治疗:平衡复发和/或转移性头颈癌患者的治疗结果、毒性和生活质量
Pub Date : 2013-12-01 DOI: 10.12788/j.suponc.0005
Barbara A Murphy

There are a number of challenges facing head and neck cancer patients who present with metastatic or locally recurrent head and neck cancer; such as, limited treatment options, overall poor prognosis, and high symptom burden secondary to tumor and treatment. Disease and symptom management can be difficult, and requires that the potential benefits versus the adverse effects of systemic therapy be weighed very carefully. Individual patient characteristics including performance status, weight loss, symptom burden, comorbidities, and social supports must be taken into consideration. Unfortunately, reliable data describing the impact of therapy on symptom burden and quality of life (QOL) is lacking. Recently completed randomized phase III treatment trials have demonstrated the feasibility of incorporating patient reported outcome measures to assess symptoms and QOL into clinical studies. Nonetheless, obstacles to accurate and thorough QOL reporting remain. Development of tools directed at symptom burden and functional impairment in the metastatic or recurrent head and neck cancer population is needed. Such tools would enhance our ability to assess the impact of treatment, thus optimizing treatment decisions for patients with recurrent and/or metastatic head and neck cancer.

有许多头颈癌患者面临着转移性或局部复发性头颈癌的挑战;例如,有限的治疗选择,整体预后差,以及继发于肿瘤和治疗的高症状负担。疾病和症状管理可能是困难的,并且需要非常仔细地权衡全身治疗的潜在益处和不良影响。必须考虑到个体患者的特征,包括运动状态、体重减轻、症状负担、合并症和社会支持。不幸的是,缺乏描述治疗对症状负担和生活质量(QOL)影响的可靠数据。最近完成的随机III期治疗试验证明了将患者报告的结果措施纳入临床研究以评估症状和生活质量的可行性。尽管如此,准确和彻底的生活质量报告仍然存在障碍。需要开发针对转移性或复发性头颈癌人群的症状负担和功能损害的工具。这些工具将提高我们评估治疗效果的能力,从而优化复发和/或转移性头颈癌患者的治疗决策。
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引用次数: 15
My mom, the cancer warrior. 我妈妈,癌症斗士。
Pub Date : 2013-12-01 DOI: 10.12788/j.suponc.0026
Kimberly Lastinger
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引用次数: 0
Chlorpromazine bioavailability from a topical gel formulation in volunteers. 氯丙嗪在志愿者局部凝胶制剂中的生物利用度。
Pub Date : 2013-09-01 DOI: 10.12788/j.suponc.0010
Amanda M Weiland, Bridget McCrate Protus, Jason Kimbrel, Phyllis A Grauer, Jennifer Hirsh

Background: Symptom management medications are often compounded into topical gel formulations providing an alternative route of administration for hospice and palliative care patients. Though commonly used, transdermal absorption and bioavailability studies of these gel products are lacking. Chlorpromazine was studied because it is FDA approved for treatment of nausea and vomiting and is used off-label for treatment of agitation and delirium.

Objective: The objective of this study is to determine the transdermal absorption of chlorpromazine PLO gel in healthy adults.

Methods: Twenty-five milligrams of chlorpromazine in PLO gel was applied to 10 subjects' wrists and 100 mg was applied to 1 subject's wrist. Blood draws were completed preapplication and 1, 2, and 4 hours postapplication. This single-center unblinded study recruited healthy adults between 18 and 70 years of age. Participants were not pregnant, did not have an allergy to any component of the study medication, and were not taking a phenothiazine medication.

Results: Chlorpromazine was undetected in any of the 11 subjects' blood samples.

Limitations: There is an assumption of equivalent medication absorption in healthy patients and palliative care or hospice patients.

Conclusion: Rapid relief of symptoms at end of life is essential. Chlorpromazine in PLO gel may not be an effective treatment option since blood levels were undetectable at 1, 2, and 4 hours after topical application.

背景:症状治疗药物通常被复合成局部凝胶制剂,为临终关怀和姑息治疗患者提供了另一种给药途径。虽然这些凝胶产品常用,但缺乏透皮吸收和生物利用度的研究。氯丙嗪被研究是因为它被FDA批准用于治疗恶心和呕吐,并被用于治疗躁动和谵妄。目的:测定氯丙嗪PLO凝胶在健康成人体内的透皮吸收。方法:将氯丙嗪含PLO凝胶25 mg应用于10例受试者腕部,100 mg应用于1例受试者腕部。应用前、应用后1、2、4小时完成抽血。这项单中心非盲法研究招募了年龄在18至70岁之间的健康成年人。参与者没有怀孕,没有对研究药物的任何成分过敏,也没有服用吩噻嗪类药物。结果:11例患者血液样本均未检出氯丙嗪。局限性:假设健康患者和姑息治疗或临终关怀患者的药物吸收相同。结论:在生命末期迅速缓解症状是至关重要的。氯丙嗪在PLO凝胶中可能不是一种有效的治疗选择,因为局部应用后1、2和4小时的血液水平无法检测到。
{"title":"Chlorpromazine bioavailability from a topical gel formulation in volunteers.","authors":"Amanda M Weiland,&nbsp;Bridget McCrate Protus,&nbsp;Jason Kimbrel,&nbsp;Phyllis A Grauer,&nbsp;Jennifer Hirsh","doi":"10.12788/j.suponc.0010","DOIUrl":"https://doi.org/10.12788/j.suponc.0010","url":null,"abstract":"<p><strong>Background: </strong>Symptom management medications are often compounded into topical gel formulations providing an alternative route of administration for hospice and palliative care patients. Though commonly used, transdermal absorption and bioavailability studies of these gel products are lacking. Chlorpromazine was studied because it is FDA approved for treatment of nausea and vomiting and is used off-label for treatment of agitation and delirium.</p><p><strong>Objective: </strong>The objective of this study is to determine the transdermal absorption of chlorpromazine PLO gel in healthy adults.</p><p><strong>Methods: </strong>Twenty-five milligrams of chlorpromazine in PLO gel was applied to 10 subjects' wrists and 100 mg was applied to 1 subject's wrist. Blood draws were completed preapplication and 1, 2, and 4 hours postapplication. This single-center unblinded study recruited healthy adults between 18 and 70 years of age. Participants were not pregnant, did not have an allergy to any component of the study medication, and were not taking a phenothiazine medication.</p><p><strong>Results: </strong>Chlorpromazine was undetected in any of the 11 subjects' blood samples.</p><p><strong>Limitations: </strong>There is an assumption of equivalent medication absorption in healthy patients and palliative care or hospice patients.</p><p><strong>Conclusion: </strong>Rapid relief of symptoms at end of life is essential. Chlorpromazine in PLO gel may not be an effective treatment option since blood levels were undetectable at 1, 2, and 4 hours after topical application.</p>","PeriodicalId":75116,"journal":{"name":"The journal of supportive oncology","volume":"11 3","pages":"144-8"},"PeriodicalIF":0.0,"publicationDate":"2013-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"32009146","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 10
Best practices for pediatric palliative cancer care: a primer for clinical providers. 小儿姑息性癌症护理的最佳实践:临床提供者的入门。
Pub Date : 2013-09-01 DOI: 10.12788/j.suponc.0012
Deena Levine, Catherine G Lam, Melody J Cunningham, Stacy Remke, Jody Chrastek, Jeffrey Klick, Robert Macauley, Justin N Baker

Cancer is the leading cause of disease-related death in children and adolescents. Pediatric patients with cancer suffer greatly at the end of life. However, palliative care interventions can reduce suffering and significantly improve the care of these patients and their families. A large percentage of pediatric deaths occur outside of the hospital setting where pediatric palliative resources may not be readily available. Patients in the home setting may be cared for by community hospice programs, which are typically staffed for adult populations. Increasingly, nonpediatric providers are asked to provide palliative care for children and adolescents at the end of life, yet they receive little formal training in this area. This review focuses on the principles of best practice in the provision of palliative care for children and adolescents with cancer. Our intent is to aid clinical providers in delivering optimal care to this patient population. Topics unique to pediatric palliative care that are addressed include: providing pain and symptom management in the broad pediatric range from neonate to adolescent; caring for and interacting with developmentally distinct groups; engaging in shared decision making with parents and adolescents; providing accommodations for prognoses that are often more uncertain than in adult patients; and delivering concurrent disease-directed therapy with palliative care.

癌症是儿童和青少年疾病相关死亡的主要原因。患有癌症的儿科患者在生命的最后阶段承受着巨大的痛苦。然而,姑息治疗干预措施可以减少痛苦,并显著改善这些患者及其家属的护理。很大比例的儿科死亡发生在医院之外,那里可能不容易获得儿科姑息治疗资源。在家里的病人可以由社区临终关怀项目来照顾,这些项目通常是为成年人服务的。越来越多的非儿科提供者被要求为生命末期的儿童和青少年提供姑息治疗,但他们在这方面几乎没有接受过正式培训。这篇综述的重点是在为患有癌症的儿童和青少年提供姑息治疗的最佳实践原则。我们的目的是帮助临床提供者提供最佳的护理,以这一患者群体。儿科姑息治疗的独特主题包括:在从新生儿到青少年的广泛儿科范围内提供疼痛和症状管理;照顾发展上不同的群体并与之互动;参与与父母和青少年共同决策;为预后往往比成人患者更不确定的患者提供治疗;同时提供疾病导向治疗和姑息治疗。
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引用次数: 36
期刊
The journal of supportive oncology
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