Exploring the experience of weight loss in people with advanced cancer

AIM: This paper reports a study of the experience of and concerns about weight loss described by patients with advanced cancer, their caregivers and nurse specialists. BACKGROUND: Weight loss is reported to be one of the commonest symptoms experienced by patients with advanced cancer. There is evidence that it can be of concern to patients and their caregivers. However, little is known about why this is the case or how people might be helped to live with the symptom. METHOD: An exploratory study with a purposive sample of 30 patients, 23 caregivers, and 14 specialist nurses from the South of England was conducted in 2003. The in-depth interviews focused on the experience of weight loss and its management. Interviews were transcribed verbatim, then analysed using an approach informed by Wolcott's framework for qualitative data analysis and Miles and Huberman's 'mixed strategy for cross-case analysis'. FINDINGS: Concern was experienced when advanced cancer became visible through weight loss. Visible weight loss symbolized proximity to death, loss of control and both physical and emotional weakness. Despite this, weight loss was not routinely assessed by palliative care nurse specialists, who, like others in the patient's social network, respected a weight loss taboo in the belief that little could be done to help people live with the symptom. CONCLUSION: Weight loss-related concern might be mitigated if clinicians adopted a systematic and proactive approach to the management of the symptom that breaks through the weight loss taboo.     

Active life expectancy of older people in Mexico

BACKGROUND: Social and economic development together with demographic changes and health interventions have resulted in an increase in life expectancy and a rapidly ageing population in Mexico. Whether people will live longer active and independent lives is still, however, unknown. We will address this question, providing the first estimates of active life expectancy by age, sex and local regional area in Mexico. METHODS: Active life expectancy was calculated using the Sullivan method with abridged life tables. Information on the older Mexican population covered by the Mexican Institute of Social Security (IMSS) and the number of deaths for the same group in the year 2000 was obtained from the Office for Health Statistics and Information at IMSS in Mexico. Information on ability to perform basic activities of daily living was obtained from the National Survey on Ageing carried out in IMSS during 1998-99. RESULTS: For males and females combined, active life expectancy decreased from 26.9 years at 60 years to 5.7 years at 85 years. Women's life expectancy exceeded that of men but women lived more years dependent. Similarly, older people in geographical areas with longer life expectancy spent a lower proportion of remaining life active. CONCLUSION: The success in increasing life expectancy above average in some groups of older people covered by IMSS has been accompanied by increments in the proportion of remaining years dependent upon others for help in basic self-care activities.     

Men's experience of their life situation when diagnosed with advanced prostate cancer

AimThe aim was to improve the knowledge and understanding of how newly diagnosed advanced prostate cancer affects the men and their life situation and perhaps causes fatigue before the side effects of any treatment has an impact on them.MethodThe qualitative study where ten men, newly diagnosed with advanced prostate cancer and at an early stage in their treatment, were interviewed. The interviews were analysed by using Gadamer's hermeneutics.ResultsThe men in the present study did not experience fatigue specifically because they had been diagnosed for advanced prostate cancer. Three topics were identified during the analysis and interpretations: awareness of mortality, the influence on their emotions and the influence on their normal life. These topics offered a structure presenting the essence; the need to get back to as normal a life as possible, albeit with a new perspective. The topics together confirmed an affected life situation, which in turn helped the participants to form a new perspective on life.ConclusionThe knowledge and understanding of the study is that advanced prostate cancer affects men's lives: they are placed in a new life situation, against their will, and in their new situation they form a new life perspective. Healthcare professionals need to evaluate, perceive and furthermore understand the men's apprehensions and expectations, on an individual basis, for their future and empower them to formulate a new life perspective.     

Fatigue experience in advanced cancer: a phenomenological approach

This study describes the experience of fatigue in patients with advanced cancer. A phenomenological approach was adopted to allow a fuller expression of the phenomenon of fatigue in the sample of six patients. Five major themes were identified. These were physical, psychological, social and spiritual consequences of fatigue, and helpful and unhelpful coping strategies. The themes demonstrate the complexity of fatigue, which had an all-encompassing effect on patients' lives. The themes were interconnected and cannot be viewed independently. For these patients with advanced cancer the meaning of fatigue was intertwined with the process of adjusting to living with a terminal illness and ultimately death. It was impossible for them to separate the two. Coping strategies that would normally be of use to fatigued individuals were shown to have little or no benefit. Sensitive communication about fatigue and its meaning to the patient may assist adjustment and generate hope.     

北京市不同社会经济状况老年人的预期寿命和健康预期寿命

目的:了解北京老年群体中社会经济状况对人群预期寿命和健康预期寿命的影响。方法:样本来自北京老龄化纵向研究,对象为北京市城区(宣武)、近郊(大兴)、远郊(怀柔)55岁以上的人群,1992年基线调查3257例,由经过培训的调访员入户作问卷调查。1994,1997年对该样本随访,了解存活和健康状况。根据能否独立完成日常生活活动(ADL)认定功能健康与否。社会经济状况(socioeconomicstatus,SES)的指标选用教育、收入、职业和家庭拥有财物4项,并均按两分法分为高、低两水平,根据基线调查结果区分每人的各指标所在的高、低位置。利用IMaCH软件多状态生命表法计算预期寿命(lifeexpectancy,LE)、健康预期寿命(activelifeexpectancy,ALE)。结果:老年人LE和ALE男性均低与于女性,但男性ALE/LE高于女性。按不同指标计算,SES高水平者较低水平者男性LE增加20%～52%(延长2.1～5.77年)、女性增加4%～25%(延长0.6～4.3年),ALE男性增加30%～77%(延长2.1～4.0年)、女性增加5%～73%(延长0.6～5.6年)。不同指标与寿命相关的程度不同,男性中收入和财物拥有与ALE/LE的关系最大,女性以家庭财物拥有影响明显。高、低组间的差距随增龄加大。结论:北京市老年人中SES高水平的人较低SES水平的人,有更长的预期寿命和健康预期寿命和较高的ALE/LE     

Discussing life expectancy with terminally ill cancer patients and their carers: a qualitative study

Goals of work There is uncertainty regarding the preferred content and phrasing of information when discussing life expectancy with terminally ill cancer patients and their carers. The objective of this study was to explore the various stakeholders perceptions about these issues.Subjects and methods We conducted focus groups and individual interviews with 19 patients with advanced cancer and 24 carers from three different palliative care (PC) services in Sydney and 22 PC health professionals (HPs) from ten different sites in Australia. The focus groups and individual interviews were audiotaped and fully transcribed. Further focus groups and/or individual interviews were conducted until no additional topics were raised. Participants narratives were analysed using qualitative methodology.Main results Participants suggestions regarding the content of prognostic discussions included: explaining uncertainty and limitations, explaining the process involved with making survival predictions, and avoiding being too exact. Those patients and carers who wanted to be given a time frame mostly wanted to know how long the average person with their condition would live and/or be given a rough range. HPs had various views regarding ways to phrase life expectancy: days versus weeks versus months, likelihood of the patients being alive for certain events, a rough quantitative range and probabilities (e.g. 10% and 50% survival). However, most HPs said they would rarely if ever give statistical information to patients.Conclusions This paper provides some potential strategies, words and phrases which may inform discussions about life expectancy. Further research is needed to determine the generalizability of these findings.     

The management of constipation in people with advanced cancer

Constipation represents a significant problem for people with advanced cancer. It ranks in the top three most uncomfortable symptoms experienced, causing pain and anorexia that ultimately result in misery. The negative impact upon the quality of life of the patient and their carers is significant. The key to the provision of effective care lies in the informed application of the nursing process, underpinned by a sound knowledge base in relation to the management of constipation. Theoretical knowledge enables appropriate preventative interventions to be planned in collaboration with other members of the multidisciplinary team. When preventative measures are not applied or are unsuccessful, informed assessment and care planning enables appropriate interventions to be applied in order to resolve constipation. This article will discuss the causes and management of constipation. The discussion focuses on assessment, setting goals with the patient and their carers, planning appropriate nursing interventions to support medical interventions and evaluating clinical outcomes.     

Role recognition and changes to self-identity in family caregivers of people with advanced cancer: a qualitative study

Purpose  

Family caregivers of people with advanced cancer can provide extensive support to the patient. However, the role is not well defined and their experiences are poorly understood. This study aimed to explore how caregivers view their role and the impact of their caregiving.     

Older women's attitudes to cervical screening and cervical cancer: a New Zealand experience

An in-depth series of interviews was undertaken amongst a small group of older, Caucasian women, in Auckland, New Zealand The study was part of the region's cervical screening programme The aim of the study was to determine how the older woman's perceptions of cervical cancer and cervical screening services might be affecting her health-seeking behaviour Healthy, Caucasian women between 45 and 70 years of age were invited to participate These women had either declined or delayed having regular cervical smears Interviews were recorded and transcribed, then subjected to thematic analysis Although small, the study is important in that it highlights cognitive, emotional, socio-economic and ego integrity barriers to regular cervical screening Nurse clinicians have a major role in disease prevention and education for healthy older women The findings provide a useful background for developing strategies to increase the uptake of cervical smears amongst older Caucasian women They may also be viewed as a pilot for the development of questionnaires, or for further investigation of perceptions of older women in other ethnic groups     

Using videotape in the modification of attitudes toward people with physical disabilities

Negative perceptions and biases against individuals with disabilities appear to be perpetuated in part by their portrayal in various media forms. While there is evidence that television and videotape presentations of capable and competent disabled persons can enhance status and esteem, such approaches have been rarely employed. The present paper reviews relevant work in this area. Further, it describes the development of an educational video based on the life of a woman with neurofibromatosis in which her abilities and achievements are underscored. Effects of the video on educators are examined.     

Health-related quality of life and health-adjusted life expectancy of people with diabetes in Ontario, Canada, 1996-1997

OBJECTIVE: To estimate the burden of illness from diabetes using a population health survey linked to a population-based diabetes registry. RESEARCH DESIGN AND METHODS: Measures of health-related quality of life (HRQOL) from the 1996/97 Ontario Health Survey (n = 35,517) were combined with diabetes prevalence and mortality data from the Ontario Diabetes Database (n = 487,576) to estimate the impact of diabetes on life expectancy, health-adjusted life expectancy (HALE), and HRQOL. RESULTS: Life expectancy of people with diabetes was 64.7 and 70.7 years for men and women, respectively-12.8 and 12.2 years less than that for men and women without diabetes. Diabetes had a large impact on instrumental and basic activities of daily living, more so than on functional health. HALE was 58.3 and 62.7 years, respectively, for men and women-11.9 and 10.7 years less than that of men and women without diabetes. Eliminating diabetes would increase Ontario life expectancy by 2.8 years for men and 2.6 years for women; HALE would increase by 2.7 and 3.2 years for men and women, respectively. CONCLUSIONS: The burden of illness from diabetes in Ontario is considerable. Efforts to reduce diabetes would likely result in a "compression of morbidity." An approach of estimating diabetes burden using linked data sources provides a robust approach for the surveillance of diabetes.     

Oral care for people with advanced cancer: an evidence-based protocol

Poor oral health is an extremely common problem in patients with advanced cancer and, because of its impact on quality of life, promoting oral care should be regarded as a priority by every hospice and palliative care team. At Accord Hospice, Paisley, UK, a protocol for oral care has been developed which is simple, inexpensive and evidence-based. Evaluation of the protocol has shown that it can lead to significant and consistent improvements in oral health and comfort. A survey of mouth-care practices in other Scottish hospice units reveals that although much agreement exists, certain practices that are unsupported by research evidence are still undertaken.     

Agreement between personally generated areas of quality of life concern and standard outcome measures in people with advanced cancer

Purpose

People with advanced cancer experience different sequelae which have unique effects on quality of life (QOL). The patient-generated index (PGI) is a personalized measure that allows patients to nominate, rate, and value areas that have the most impact on QOL. Fatigue, pain, and aspects of physical function are among the top 10 areas with QOL impact. An area of validation that is lacking for the PGI is the extent to which spontaneously nominated areas of QOL that patients are concerned with, agree with ratings obtained from standard patient reported outcomes (PROs).

Methods

Data from 192 patients were used to compare ratings on fatigue, pain, and physical function obtained from PGI to those from standard outcome measures.

Results

Within one severity rating, agreement ranged from 32.1 to 76.9 % within the fatigue domain, 34.2 to 95.24 % for pain, and between 84.2 and 94.7 % for physical function. Of the 10 items where the PGI had the highest agreement, 7 came from the RAND-36. At the domain level, people nominating an area scored in the more impaired range on standard measures than people who did not.

Conclusion

PGI gives comparable information as do standard measures.

Implications for cancer

PGI provides important information to guide clinical care of the patient and also produces a legitimate total score suitable for research.

     

晚期肺癌患者直系家属生活期望水平现状调查及影响因素分析

目的 探讨晚期肺癌患者直系家属生活期望水平现状,并分析相关影响因素。方法 选择2019年1月至2021年6月同济大学附属上海市肺科医院接受诊治的318例晚期肺癌患者的直系家属作为研究对象,采用自制一般资料调查表、社会支持评定量表和Herth希望量表调查所有研究对象的一般人口学资料、社会支持情况及生活期望水平,采用单因素分析和多元线性逐步回归分析影响晚期肺癌患者直系家属生活期望水平的因素。结果 晚期肺癌患者直系家属Herth希望量表评分平均为（36.58±4.87）分。多元线性回归分析表明,年龄、照顾患者时长、家庭人均月收入、社会支持是晚期肺癌患者直系家属生活期望水平的影响因素（P<0.05）。结论 晚期肺癌患者直系家属生活期望水平得分中等,加强心理干预,帮助患者家属获取更多的社会支持,可能有助于进一步提高患者家属的生活期望水平。     

Motivation can prolong life expectancy. A health education programme to help people give up smoking

Smoking is an acknowledged risk factor for coronary heart disease, but can seem impossible to give up. A health education plan can provide the necessary structure and motivation to help people stop smoking.