关于癌症病人知情权问题探讨

目前全球癌患者人数超过1000万,中国每年新增癌症病例约160万,探讨如何处理癌症病人的知情权问题,贴近社会公众,具有重要的现实意义.     

Unreliable Bodies: A Follow‐up Twenty Years Later by a Mother and Daughter about the Impact of Illness and Disability on their Lives

We are a mother and daughter, both health care professionals, who offer a follow‐up to an article we published twenty years ago about the impact of each other's ongoing, serious medical problems on our relationship. In this article, we contribute a long‐term perspective on the differences between having an illness that is well or poorly understood by medical professionals and the lay community. We also discuss health in the context of identity formation and life stage, as during this interval the daughter left home, graduated college, married, and had two children. Also in this period, the mother survived a third breast cancer and other life‐threatening illnesses. We discuss the impact of these experiences on each other and in other important relationships in our lives. Current discourses on daughters of breast cancer survivors do not fit our experience and we speculate about why our story differs. We find that although we continue to contend with serious medical issues that impact our own, each other's, and our families' lives, nonetheless, our lives are rich, rewarding, and “appropriate” for our life stage. That is the news.     

FURNISHING THE SKILL WHICH CAN SAVE THE CHILD: DIPHTHERIA,GERM THEORY,AND THEODICY

Amid the diverse ways men and women have viewed the relationship between science and religion, explicit arguments that “Science is God's Provision” remain unexamined by historians. Such arguments are examined here as they relate to the problem of theodicy, by looking at a particular case study that inspired comments on the relationship between medicine and faith, namely, the discovery of the diphtheria antitoxin. This story highlights, first, the flexibility of the tradition of natural theology, and second, the important role the problem of theodicy has played in the history of the relationship between science and religion.     

Increased cognitive problem reporting after information about chemotherapy-induced cognitive decline: The moderating role of stigma consciousness

Objective: Information about treatment side effects can increase their occurrence; breast cancer (BC) patients showed increased cognitive problem reporting (CPR) and decreased memory performance after information about cognitive side effects. The current study extends previous research on adverse information effects (AIE) by investigating (a) risk factors, (b) underlying mechanisms and (c) an intervention to reduce AIE.

Design: In an online experiment, 175 female BC patients were randomly assigned to one of three conditions. In the two experimental groups, patients were informed about the possible occurrence of cognitive problems after chemotherapy with (intervention group) or without (experimental group) reassuring information that ‘there are still patients who score well on memory tests’. In the control group, no reference to chemotherapy-related cognitive problems was made.

Main outcome measures: Main dependent measure was CPR. Four moderating and five mediating processes were examined.

Results: CPR increased with higher levels of stigma consciousness in the two experimental groups, but not in the no-information control group.

Conclusion: Merely informing patients about cognitive side effects may increase their occurrence, especially among individuals vulnerable to patient stereotypes. Adding reassuring information is not sufficient to reduce AIE.     

Measuring illness representations in breast cancer survivors (BCS) prescribed tamoxifen: Modification and validation of the Revised Illness Perceptions Questionnaire (IPQ-BCS)

Objective: The Revised Illness Perceptions Questionnaire (IPQ-R), widely used to assess illness perceptions, may fail to measure unique characteristics of different illnesses. This study modified and validated the IPQ-R for breast cancer survivors to provide detailed understanding of the specific illness perceptions held by these patients.

Design: Initial modifications were made following qualitative interviews and were revised in a think-aloud study. The modified scale was tested in 753 breast cancer survivors prescribed tamoxifen. Modifications included adding a tamoxifen consequences scale and adapting the timeline scales to measure beliefs around risk of recurrence and cure. A confirmatory factor analysis was conducted on the modified questionnaire and an exploratory factor analysis on the causal beliefs scale. Test–retest reliability, internal consistency and construct validity were also examined.

Results: The proposed eight-factor structure showed acceptable model fit, with high loadings and good reliability for all subscales. Correlations between subscales were consistent with theory and previous research.

Conclusions: The IPQ-BCS is valid and reliable, and provides unique understanding of specific perceptions held by this population, including beliefs surrounding risk of recurrence and consequences of ongoing hormonal treatment. Identifying these perceptions will aid development of interventions targeting depression, fear of recurrence and medication non-adherence.     

Experiencing menopause in the context of cancer: Women’s constructions of gendered subjectivities

Objective: Many women experience premature menopause following cancer treatment, accompanied by psychological distress, and poor health-related quality of life. In this qualitative study, we examined how women construct their gendered subjectivities – their sense of self as a woman – in the context of premature menopause after cancer.

Design: We analysed data from open-ended survey items and semi-structured interviews with women who had experienced cancer. Six hundred and ninety-five women completed the online survey and 61 took part in a semi-structured interview. A thematic decomposition was conducted to identify the subject positions associated with menopause taken up by the women.

Results: Three overall themes were identified: ‘The Incomplete Woman,’ ‘The Abject, Asexual Woman’ and ‘Out of Time and Social Isolation.’ Menopause was predominantly constructed as a negative experience, similar to older post-menopausal women and dissimilar to peers, contributing to experiences of social isolation. Menopause also signified the presence of a medically diagnosed cancer condition, and uncertainty around cancer prognosis.

Conclusion: It is important for cancer support group leaders and other service providers to be sensitive to women’s negotiation of menopause following cancer, in the context of broader cultural constructions, in order to provide appropriate information and support.     

A randomized controlled trial of expressive writing in breast cancer survivors with lymphedema

Objective: Breast cancer survivors who develop lymphedema report poorer quality of life (QoL) than those without lymphedema. Expressive writing is a potential intervention to address QoL.

Design: Adult women (N = 107) with breast cancer and chronic Stage II lymphedema were randomised to writing about thoughts and feelings specific to lymphedema and its treatment (intervention) or about daily activities (control) for four, 20-min sessions.

Main Outcome Measures: Outcome measures were several indicators of QoL assessed at baseline, one, three, and six months post-intervention (total scores and subscales of Upper Limb Lymphedema 27 and Functional Assessment of Cancer Therapy–Breast). Hypothesised moderators of change in QoL were dispositional optimism, avoidant behaviours, and time since lymphedema diagnosis.

Results: There was no statistically significant intent-to-treat main effects of expressive writing on QoL. Statistically significant moderating effects on change in different indicators of QoL were observed for all three moderators. Expressive writing was more effective for improving QoL in women who were higher on optimism, lower on avoidance and had less time since a lymphedema diagnosis.

Conclusion: These results provide further evidence that there are subsets of individuals for whom expressive writing is more effective. Future research may investigate targeting expressive writing based on identified moderators.     

Acute memory deficits in chemotherapy-treated adults

Data from research on amnesia and epilepsy are equivocal with regards to the dissociation, shown in animal models, between rapid and slow long-term memory consolidation. Cancer treatments have lasting disruptive effects on memory and on brain structures associated with memory, but their acute effects on synaptic consolidation are unknown. We investigated the hypothesis that cancer treatment selectively impairs slow synaptic consolidation. Cancer patients and their matched controls were administered a novel list-learning task modelled on the Rey Auditory Verbal Learning Test. Learning, forgetting, and retrieval were tested before, and one day after patients’ first chemotherapy treatment. Due to difficulties recruiting cancer patients at that sensitive time, we were only able to study 10 patients and their matched controls. Patients exhibited treatment-dependent accelerated forgetting over 24 hours compared to their own pre-treatment performance and to the performance of control participants, in agreement with our hypothesis. The number of intrusions increased after treatment, suggesting retrieval deficits. Future research with larger samples should adapt our methods to distinguish between consolidation and retrieval causes for treatment-dependent accelerated forgetting. The presence of significant accelerated forgetting in our small sample is indicative of a potentially large acute effect of chemotherapy treatment on forgetting, with potentially clinically relevant implications.     

Psychological distress and coping in nasopharyngeal cancer: an explorative study in Western Europe

Nasopharyngeal carcinoma (NPC) is the head and neck cancer with the greatest impact on patients’ quality of life. The aim of this explorative study is to investigate the psychological distress, coping strategies and quality of life of NPC patients in the post-treatment observation period. Twenty-one patients disease-free for at least two years were assessed with a medical and a psycho-oncological evaluation. Clinically relevant depressive symptoms (CRD) were present in 23.8% of patients and 33.3% reported clinically relevant anxiety symptoms (CRA). Patients with CRD and CRA showed a significantly higher score in the use of hopelessness/helplessness and anxious preoccupation coping strategies and a worse quality of life. Even in the post-treatment period, about a quarter of patients showed CRD and CRA. Results showed that patients with high anxiety or depressive symptoms seem to use dysfunctional coping strategies, such as hopelessness and anxious preoccupation, more than patients with lower levels of anxiety and depression. The use of these styles of coping thus seems to be associated to a higher presence of CRA or CRD symptomatology and to a worse quality of life.     

GOD, DISEASE, AND SPIRITUAL DILEMMAS: READING THE LIVES OF WOMEN WITH BREAST CANCER

To write about the disease of breast cancer from both scientific and spiritual perspectives is to reflect upon our genetic and spiritual ancestry. We examine the issues involved in breast cancer at the intersections of spirituality, technology, and science, using the fundamental thing we know about being human: our bodies. Our goal in this essay is to offer close readings of women's spiritual and bodily journeys through the disease of breast cancer. We have discovered that both illness and health come within the stories of particular people and particular disciplines. And to learn more about breast cancer, both scientific and spiritual aspects, one must be attentive to such particularities. Medicine and religion are bodily experiences, and being a body-self is what it means to be human.