“All My Tears Were Gone”: Suffering and Cancer Pain in Southwest American Indians

ContextAlthough minority patients with cancer are more likely to be undermedicated for cancer pain than non-Hispanic whites, little is known about the experience of cancer pain in American Indians (AIs).ObjectivesTo describe the experience of cancer and cancer pain in a sample of southwestern AIs.MethodsEthnographic interviews were conducted with 13 patients and 11 health care providers, caregivers, and community members; two questionnaires were used to collect demographic and pain data.ResultsBarriers to pain control among AIs included difficulties describing pain, a belief that cancer pain is inevitable and untreatable, and an aversion to taking opioid pain medication. Prescriber inexperience also was cited as a barrier to pain management. AIs described a strong desire to protect their privacy regarding their illness, and many felt that expressing pain was a sign of weakness. The inability to participate in spiritual and cultural activities caused AIs distress, and some discontinued treatment or missed chemotherapy appointments to engage in these activities.ConclusionResults revealed new knowledge about the cancer pain experience in AIs. The observation of the close relationship between treatment compliance and the patient's ability to participate in ceremonial and spiritual activities provides new insight into the problem of incomplete cancer treatment in this population. The finding that AI patients have a multidimensional conceptualization of pain will assist clinicians with obtaining more detailed and informative pain assessments.     

Different attitudes of oncology clinicians toward truth telling of different stages of cancer

Objectives To investigate different attitudes of oncology clinicians toward whether and how to disclose diagnosis to patients with different stages of cancer.Materials and methods A questionnaire investigating physician’s demographic information and attitude toward truth telling was delivered to 256 Chinese oncology clinicians.Results Two hundred thirty-two (90.6%) physicians completed the questionnaire. Of these oncology clinicians, 87.5% reported that a patient with early-stage cancer should be informed of the diagnosis, while only 40.5% believed that a patient with terminal illness should know the truth (P<0.001). Physicians who preferred to tell the truth reported that patients with early or terminal stage of cancer should be informed by the doctor-in-charge (81.3 vs 77.7%, respectively; P>0.05), immediately after the diagnosis (83.7 vs 87.2%, respectively), and in a quiet and undisturbed room (63.5 vs 68.1%, respectively; P>0.05). In stepwise multiple logistic regression analyses, no demographic information showed association with truth telling of early-stage cancer. Women doctors [odds ratio (OR), 2.25; 95% CI, 1.31 to 3.89; P=0.004] were more likely than men to want the patient to be informed of the terminal illness. Physicians with cancer relatives (OR, 0.55; 95% CI, 0.31 to 0.97; P=0.04) were less likely than physicians without cancer relatives to want the patient to be informed of the terminal illness.Conclusion Oncology clinicians differed in their attitudes toward truth telling of different stages of cancer. Physicians reported that the doctor-in-charge should be the ones to disclose the condition of the patient, immediately after the diagnosis, and in a quiet and undisturbed room.Yu Jiang, Jun-ying Li, and Chang Liu contributed equally to this work.     

Review article: A primer for clinical researchers in the emergency department: Part VI. Measuring what matters: Core outcome sets in emergency medicine research

In this series we address important topics for clinicians who participate in research as part of their work in the ED. The overarching goal of clinical research is to improve care and determine which treatment is best. Yet, defining and measuring outcomes – what is ‘best’ – can be one of the most difficult steps in the design of a study, in particular when answers to research questions cannot be captured in simple binary results. This article addresses how to choose outcome measures and highlights the increasingly important concept of core outcome sets.     

School health nurses and substance use among adolescents - towards individual identification and early intervention

Adolescents' health is today threatened by the use of alcohol and other psychoactive substances. It is therefore important to develop interventions related to substance use in school health care. The aim of this study was to examine the empowering or risk background factors related to substance use among adolescents, and the ability of school nurses (PHN) to identify these factors and to provide needed individual early intervention. The data were collected by semistructured questionnaires completed by 14- to 18-year-old adolescents (n = 326, response rate 79) and PHNs (n = 10) in 2004. The adolescent questionnaire consisted of items related to the respondents' background and Adolescents' Substance Use Measurement (ADSUME). Following individual consent, adolescents' ADSUME responses were sent to the PHNs for intervention. The PHNs assessed the adolescents' empowering background factors and intervention using the questionnaire, and 70% (n = 228) of their answers matched the adolescents' answers. The data were analysed with the SPSS software using the chi-squared test, Fisher's exact test, kappa coefficient and agreement percentages. Substance use among adolescents was associated with parental support, mother's education and smoking, the adolescents' knowledge about substances, peer support and hobbies. The PHNs' assessments regarding supportive background were not in agreement with the assessments of adolescents who were using hazardous substances. One-fifth of the adolescents received the brief intervention, although many of them might have needed extra support and follow-up on the basis of their ADSUME results. The research findings can be generalized only for alcohol use, because only 3% of the study informants used substances other than alcohol. Further research is warranted concerning PHNs' ability to identify hazardous substance use and to ensure preventive early intervention and requisite support among substance-using adolescents in order to improve evidence-based health promotion.     

"Seeing" artificial hydration and nutrition through an ethical lens

Nurses may be asked by conscious, rational patients to participate in the withdrawal of their life-sustaining nutritional support. The case study presented in this column gives clinicians a framework to handle these situations when they arise, using an ethical framework as their guide.     

Personal models of diabetes in relation to self-care, well-being, and glycemic control. A prospective study in adolescence

OBJECTIVE: Personal models of diabetes have been shown to be proximal determinants of self-care behavior in adults with diabetes, both cross-sectionally and prospectively. This study set out to test the predictive utility of this approach in adolescents with diabetes. RESEARCH DESIGN AND METHODS: Participants were recruited from four regional hospitals in southern England (n = 54). They completed questionnaires assessing diabetes self-care, well-being, and personal models of diabetes (perceived impact, perceived seriousness, and short- and long-term treatment effectiveness) at baseline and 1-year follow-up. GHb assays performed as part of the patients' usual diabetes care were used to assess glycemic control. RESULTS: After controlling for baseline anxiety, change in perceived impact of diabetes prospectively predicted adolescents' anxiety (beta = -0.21; t = -2.65; P < 0.01). After controlling for baseline dietary self-care, change in perceived effectiveness of the diabetes treatment regimen to control diabetes predicted dietary self-care (beta = -0.39; t = -3.28; P < 0.0005). Poorer dietary self-care and being female were predictive of poorer glycemic control (r2 = 0.29; F = 2.74; P < 0.005). CONCLUSIONS: This study provides further support for the role of personal models of illness in determining responses to illness. As adolescents take responsibility for the management of their diabetes, parents, clinicians, educators, and interventionists should consider these adolescents' beliefs about their diabetes and its treatment as key factors influencing self-care, emotional well-being. and glycemic control.     

Variations in breast cancer treatment decisions and their impact in mounting trials

Clinical trials are often hindered by insufficient participation. Difficulties may arise if a clinician is generally reluctant to enroll patients in clinical trials, if the clinician is unwilling to enroll a patient in a particular trial, or if the patient refuses to participate. In our three-stage survey of clinicians treating breast cancer, we found that a favorable orientation to trials in principle can be attenuated when clinicians do not like the treatment regimens in a particular trial. We also found a lack of consensus as to appropriate treatment for breast cancer coupled with a high confidence by individual clinicians in their own treatment decisions (a phenomenon we term "micro-certainty/macro-uncertainty"). Accordingly, in the most controversial situations, it may be hardest to mount trials. Trial design is also complicated by the variation among clinicians in the importance they assign to various patient characteristics in making their treatment decisions. This variation can lead to difficulties in establishing patient subgroups that will be accepted by the clinical community. The trial designer will need to be alert to these considerations; efforts to build consensus on which data are necessary and which therapies are acceptable should improve the design and application of clinical trials.     

Cancer-related pain in palliative care: patients' perceptions of pain management

BACKGROUND: Pain is still a significant problem for many patients with cancer, despite numerous, clear and concise guidelines for the treatment of cancer-related pain. The impact of pain cognition on patients' experiences of cancer-related pain remains relatively unexplored. AIM: The aim of this study was to describe how patients with cancer-related pain in palliative care perceive the management of their pain. METHOD: Thirty patients were strategically selected for interviews with open-ended questions, designed to explore the pain and pain management related to their cancer. The interviews were analysed using a phenomenographic approach. FINDINGS: Patients described 10 different perceptions of pain and pain management summarized in the three categories: communication, planning and trust. In terms of communication, patients expressed a need for an open and honest dialogue with health care professionals about all problems concerning pain. Patients expressed an urgent need for planning of their pain treatment including all caring activities around them. When they felt trust in the health care organization as a whole, and in nurses and physicians in particular, they described improved ability and willingness to participate in pain management. While the findings are limited to patients in palliative care, questions are raised about others with cancer-related pain without access to a palliative care team. CONCLUSION: The opportunity for patients to discuss pain and its treatment seems to have occurred late in the course of disease, mostly not until coming in contact with a palliative care team. They expressed a wish to be pain-free, or attain as much pain relief as possible, with as few side effects as possible.     

Care diaries: a way of increasing head and neck cancer patient's involvement in their own care and the communication between clinicians

Head and neck (H&N) cancer patients and their families meet a large number of clinicians during their long treatment period and many of them find it difficult to understand all the information given concerning their illness, treatment, and care. We have developed a care diary for these patients and their families, used also by the clinicians involved, to improve communication and patient involvement. The present survey was an evaluation of the helpfulness of those diaries. Anonymous answered questionnaires were collected from 42 H&N cancer patients, 28 family members, and 47 clinicians of different categories. Altogether 85% of the respondents stated that the care diaries had a positive effect on information, in general, and communication. It is recommended that care diaries should be implemented in the standard care for H&N cancer patients and their families. To improve the clinical value, it is particularly important to inform the clinicians on how to use the care diaries. The content and layout of the care diaries needs to be developed according to suggestions given from the respondents in this survey.     

The acceptability of e-technology to monitor and assess patient symptoms following palliative radiotherapy for lung cancer

E-technology is increasingly used in oncology to obtain self-reported symptom assessment information from patients, although its potential to provide a clinical monitoring tool in palliative care is relatively unexplored in the UK. This study aimed to evaluate the support provided to lung cancer patients post palliative radiotherapy using a computerized assessment tool and to determine the clinical acceptability of the tool in a palliative care setting. However, of the 17 clinicians identified as managing patients who met the initial eligibility criteria for the study, only one clinician gave approval for their patient to be contacted regarding participation, therefore the benefits of this novel technology could not be assessed. Thirteen key clinicians from the centres involved in the study were subsequently interviewed. They acknowledged potential benefits of incorporating computerized patient assessment from both a patient and practice perspective, but emphasized the importance of clinical intuition over standardized assessment. Although clinicians were positive about palliative care patients participating in research, they felt that this population of patients were normally too old, with too rapidly deteriorating a condition to participate in a study using e-technology. In order to encourage acceptance of e-technology within palliative care, emphasis is needed on actively promoting the contribution of technologies with the potential to improve patient outcomes and the patient experience.     

Acupuncture

Worldwide, acupuncture is integral to everyday medical practice. In recent decades its practice has gained popularity in the United States. With increasing evidence of its clinical efficacy, acupuncture is now a widely practiced treatment modality in complementary and integrative medicine. According to the 2007 National Health Interview Survey, an estimated 3.1 million US adults and 150,000 children had acupuncture in the previous year. The National Health Interview Survey also estimated that between 2002 and 2007, acupuncture use among adults increased by approximately 1 million people. Patients want more information from their clinicians about the use of acupuncture and its safety and efficacy. Although many clinicians may recommend acupuncture, they often believe they are not sufficiently informed to discuss acupuncture with their patients. This article provides answers to the most frequently asked questions regarding acupuncture.     

A Symptom Management Program for Psychotically Ill Adolescents and Their Families: Preliminary Clinical Outcomes

The author describes the preliminary results of a clinical pilot study of a symptom management program for adolescents who are recovering from a non-drug-induced psychotic episode. The program was designed as a follow-up treatment for adolescents who are living at home with their families. Preliminary findings showed that the program was effective in increasing the adolescents' ability to recognize symptoms of their illnesses and to develop coping strategies to manage their symptoms.     

Insight into the heterogeneity of breast cancer through next-generation sequencing

Rapid and sophisticated improvements in molecular analysis have allowed us to sequence whole human genomes as well as cancer genomes, and the findings suggest that we may be approaching the ability to individualize the diagnosis and treatment of cancer. This paradigmatic shift in approach will require clinicians and researchers to overcome several challenges including the huge spectrum of tumor types within a given cancer, as well as the cell-to-cell variations observed within tumors. This review discusses how next-generation sequencing of breast cancer genomes already reveals insight into tumor heterogeneity and how it can contribute to future breast cancer classification and management.     

RETRACTED ARTICLE: When the treatment goal is not cure: are patients informed adequately?

We determined the extent to which Australian patients with incurable cancer are informed of their prognosis and treatment options by their oncologists and are encouraged to participate in treatment decisions. To this end, 118 patients with incurable cancer presenting for an initial consultation with one of nine oncologists in two Sydney teaching hospitals were enrolled in the study. Consultations were audio-taped. We developed a coding system to assess the disclosure of information considered necessary to equip patients to make informed decisions and to evaluate doctor encouragement of patient participation in treatment decision-making. Patient recall, satisfaction, and anxiety and their perceptions of the decision-making process were assessed. Most patients were informed about the aim of cancer treatment (84.7%), that their disease was incurable (74.6%) and about life expectancy (57.6%); 44.1% were presented with an alternative to cancer treatments, such as supportive care, 36.3% were informed how anticancer treatment would affect quality of life, and 29.7% were offered a management choice. Patient understanding was checked in only 10% of consultations. While greater information disclosure did not appear to elevate anxiety levels, greater patient participation in the decision making process was associated with increased anxiety levels ( P=0.0005), which persisted over a 2-week time span. Most patients were well informed, but important gaps remain, especially concerning information about prognosis and alternatives to cancer treatment.     

Cancer as a problem to be solved: internet use and provider communication by men with cancer

Increasingly, cancer-related Web sites have been developed to provide information for patients. More needs to be done to understand the experience of men with cancer using the Internet. Heideggerian hermeneutics is the interpretive approach used to guide this study. Fifteen men with cancer who used the Internet were recruited through a prostate cancer support group and snowball sampling. Participants were individually interviewed and asked to tell stories of Internet use and practices. Transcribed interviews provided data for interpretive analysis. The overall constitutive pattern describing the men's experience is "cancer diagnosis as a problem to be solved." Five related themes included (1) seeking disease and treatments information from the Internet for decision making, to become comfortable with treatment plan; (2) organizing information to facilitate provider encounters and to monitor for reoccurrence; (3) evaluating Web information by credibility and usability with trust in the physician influencing the end decision point; (4) symptom management by knowing possibilities by hearing patient stories; and (5) navigating through the healthcare system politics and power. Men with cancer are incorporating Internet use into their cancer journey. They perceive changing provider-patient relationships when they participate in treatment decisions and monitor for reoccurrence.     

A different way of being: adolescents' experiences with cancer

Adolescents with cancer face many challenges that may impact negatively their psychological well-being. In evaluating the psychosocial functioning of adolescents with cancer, research suggests that an altered self-image may emerge in those who have difficulty adjusting. However, little is known about adolescents' perceptions of how cancer affects their sense of self. Part of a larger study, this article addresses findings specific to understanding the impact that cancer and its symptoms had on adolescents' sense of self. To help discover meaningful interpretations of their experiences, a longitudinal, qualitative study was conducted. Data collection methods included open-ended, individual and focus group interviews and participant observation. The constant comparative method of data analysis yielded theoretical categories that were supported by the adolescents' narratives. Findings revealed that adolescents experienced changes in their lived bodies because of the symptoms and this, in turn, impacted their sense of self and way of being in the world. Six ways of being in the world were identified: life as a klutz; life as a prisoner; life as an invalid; life as an alien; life as a zombie; and life as a kid. In helping adolescents deal with the changes, it was important to family and friends to respond to them like they were the same person, but also to treat them special at times. Although adolescents spoke to the significance that cancer had on their lives, they described themselves as "still being pretty much the same person."     

Stability of self-reported family history of prostate cancer among African American men

The genome-wide search for the prostate cancer gene holds the promise of the availability of prostate cancer susceptibility testing in the near future. When this occurs, self-reported history of prostate cancer will be critical in determining who is eligible for cancer susceptibility testing. Little attention has been given to the reliability of self-reported family history of prostate cancer, particularly in African American men. This correlational study measured the stability of self-reported family history of prostate cancer over a one-year time period (between 1997 and 1998) with 96 African American men from a southern state. The men were asked on two separate occasions, 1 year apart, "Have any of your men blood relatives ever had prostate cancer?" The question had a prior test-retest reliability of 0.85 over a 2-week period. Forty-eight percent of the men changed their answers on the second administration. Men most likely to change their answers were low-income men and men who did not participate in a free prostate cancer screening. This research highlights the need for public genetic education and the recognition by health professionals that self-reported family history of cancer is a variable that changes as families have increased awareness and communication concerning family history of cancer.