Patient-Centered Discussions About Disease Progression, Symptom, and Treatment Burden in Chronic Obstructive Pulmonary Disease Could Facilitate the Integration of End-of-Life Discussions in the Disease Trajectory: Patient, Clinician, and Literature Perspectives: A Multimethod Approach.

Background: Patients with chronic obstructive pulmonary disease (COPD) seldom discuss preferences for future care/treatments with clinicians. The lack of discussions prevents the delivery of care grounded on patient preferences. Instead, treatments become increasingly burdensome as disease progresses and patients approach the end of life. Objective: Identify current and best practice in initiating and conducting conversations about future and palliative care, by integrating data from multiple sources. Design: Multiphasic study where the findings of a systematic literature review and qualitative interviews were combined and synthesized using a triangulation protocol. Setting/Participants: Thirty-three patients with COPD and 14 clinicians from multiple backgrounds were recruited in the United Kingdom. Results: Clinicians' and patients' poor understanding about palliative care and COPD, difficulties in timing and initiating discussions, and service rationing were the main factors for late discussions. Divergent perspectives between patients and clinicians about palliative care discussions often prevented their start. Instead, early and gradual patient-centered discussions on treatment choices, symptom, and treatment burden were recommended by patients, clinicians, and the literature. Earlier patient-centered discussions may reduce their emotional impact and enable patients to participate fully, while enabling clinicians to provide timely and accurate information on illness progression and appropriate self-management techniques. Conclusion: Current approaches toward palliative care discussions in COPD do not guarantee that patients' preferences are met. Early and gradual patient-centered discussions may enable patients to fully express their care preferences as they evolve over time, while minimizing the impact of symptom and treatment burden.

The preferences of patients with chronic obstructive pulmonary disease are to discuss palliative care plans with familiar respiratory clinicians, but to delay conversations until their condition deteriorates: A study guided by interpretative phenomenological analysis.

BACKGROUND: Chronic obstructive pulmonary disease is associated with an uncertain trajectory, which challenges prognostication and means that most patients are not involved in advance care planning and do not receive palliative and end-of-life care. AIM: To understand the preferences of patients with chronic obstructive pulmonary disease for discussions about palliative and advance care planning with clinicians. DESIGN: Semi-structured interviews were conducted with patients with chronic obstructive pulmonary disease. Data analysis was guided by principles of interpretative phenomenological analysis, of which symbolic interactionism and interpretation principles were employed throughout. SETTING/PARTICIPANTS: A total of 33 British patients with chronic obstructive pulmonary disease at different stages of their disease trajectory were recruited. RESULTS: Patients preferred to discuss palliative care with clinicians they perceived had greater levels of competency and authority in care and with whom they had an established relationship, usually a specialist. Patients favoured large amounts of information about treatments and care, but reported a lack of illness-related information and problems accessing appointments with clinicians. Consequently, patients deferred discussions to the future, usually once their condition had deteriorated significantly or planned to wait for clinicians to initiate conversations. This was not rooted in patient preferences, but related to clinicians' lack of time, absence of an established relationship and belief that appointments were for managing current symptoms, exacerbations and disease factors rather than future care and preferences. CONCLUSION: Different perceptions, competing priorities and service rationing inhibit patients from initiating early discussions with clinicians, so palliative care conversations should be initiated by respiratory-expert clinicians who know the patient well. After a sudden deterioration in the patient's condition may be a suitable time.

Developing the methods and questionnaire (VOICES-SF) for a national retrospective mortality follow-back survey of palliative and end-of-life care in England.

The National Survey of Bereaved People was conducted by the Office for National Statistics on behalf of NHS England for the first time in 2011, and repeated annually thereafter. It is thought to be the first time that nationally representative data have been collected annually on the experiences of all people who have died, regardless of cause and setting, and made publicly available informing palliative and end-of-life policy, service provision and development, and practice. This paper describes the development of the questionnaire used in the survey, VOICES-SF, a short-form of the VOICES (Views Of Informal Carers-Evaluation of Services) questionnaire, adapted specifically to address the aims of the national survey. The pilot study to refine methods for the national survey is also described. The paper also reports on the development of the retrospective, after-death or mortality follow-back method in palliative and end-of-life care, and reviews its strengths and weaknesses.

Cross-cultural adaptation and measurement properties of generic and cancer-related patient-reported outcome measures (PROMs) for use with cancer patients in Brazil: a systematic review.

PURPOSE: This systematic review (1) identifies the current generic and cancer-related patient-reported outcome measures (PROMs) that have been cross-culturally adapted to Brazilian Portuguese and applied to cancer patients and (2) critically evaluates their cross-cultural adaptation (CCA) and measurement properties. METHODS: Seven databases were searched for articles regarding the translation and evaluation of measurement properties of generic and cancer-related PROMs cross-culturally adapted to Brazilian Portuguese that are applied in adult (≥18 years old) cancer patients. The methodological quality of included studies was assessed using the COSMIN checklist. RESULTS: The bibliographic search retrieved 1674 hits, of which seven studies analysing eight instruments were included in this review. Data on the interpretability of scores were poorly reported. Overall, the quality of the CCA process was inconsistent throughout the studies. None of the included studies performed a cross-cultural validation. The evidence concerning the quality of measurement properties is limited by poor or fair methodological quality. Moreover, limited information regarding measurement properties was provided within the included papers. CONCLUSIONS: This review aids the selection process of Brazilian Portuguese PROMs for use in cancer patients. After acknowledging the methodological caveats and strengths of each tool, our opinion is that for quality of life and symptoms assessment the adapted FACT-G version and the ESAS could be recommended, respectively. Future research should rely on the already accepted standards of CCA and validation studies.

Managing expectations: cognitive authority and experienced control in complex healthcare processes.

BACKGROUND: Balancing the normative expectations of others (accountabilities) against the personal and distributed resources available to meet them (capacity) is a ubiquitous feature of social relations in many settings. This is an important problem in the management of long-term conditions, because of widespread problems of non-adherence to treatment regimens. Using long-term conditions as an example, we set out middle range theory of this balancing work. METHODS: A middle-range theory was constructed four stages. First, a qualitative elicitation study of men with heart failure was used to develop general propositions about patient and care giver experience, and about the ways that the organisation and delivery of care affected this. Second, these propositions were developed and confirmed through a systematic review of qualitative research literature. Third, theoretical propositions and constructs were built, refined and presented as a logic model associated with two main theoretical propositions. Finally, a construct validation exercise was undertaken, in which construct definitions informed reanalysis of a set of systematic reviews of studies of patient and caregiver experiences of heart failure that had been included in an earlier meta-review. RESULTS: Cognitive Authority Theory identifies, characterises and explains negotiation processes in in which people manage their relations with the expectations of normative systems - like those encountered in the management of long-term conditions. Here, their cognitive authority is the product of an assessment of competence, trustworthiness and credibility made about a person by other participants in a healthcare process; and their experienced control is a function of the degree to which they successfully manage the external process-specific limiting factors that make it difficult to otherwise perform in their role. CONCLUSION: Cognitive Authority Theory assists in explaining how participants in complex social processes manage important relational aspects of inequalities in power and expertise. It can play an important part in understanding the dynamics of participation in healthcare processes. It suggests ways in which these burdens may lead to relationally induced non-adherence to treatment regimens and self-care programmes, and points to targets where intervention may reduce these adverse outcomes.

Burden of treatment in the light of the international classification of functioning, disability and health: a "best fit" framework synthesis.

PURPOSE: This systematic literature review aimed to (1) summarize and explain the concept of Burden of Treatment (BoT) using the International Classification of Functioning, Disability and Health (ICF) terminology, and (2) inform the development of a future Comprehensive ICF Core Set for BoT. METHOD: Searches on EMbase, Medline, CINAHL and PsycINFO were conducted. Only qualitative studies were considered for inclusion. The screening and data extraction stages were followed by a "Best-fit" framework synthesis and content analysis, using the established ICF linking rules. Screening, data extraction, quality appraisal and data analysis were performed by two independent researchers. RESULTS: Seventeen studies were included in this review. The "Best-fit" framework synthesis generated 179 subthemes which identified that BoT impacts negatively on body functions and structures, restricts valued activities and participation and influences contextual factors through life roles, self-identify and relationships. The identified subthemes were linked to 77 ICF categories. CONCLUSIONS: This study is part of the preparatory phase of a Comprehensive ICF Core Set for BoT and our findings will inform the further needed studies on this phase. The use of ICF terminology to describe BoT provides an accessible route for understanding this complex concept, which is pivotal for rethinking clinical practice. Implications for rehabilitation Health professionals applying the ICF should consider the negative impact of interventions on patient's life roles and self-identity, body functions and structures and on valued activities and participation. Health professionals who may be concerned about the treatment burden being experienced by their patients can now use the ICF terminology to discuss this with the multidisciplinary team. Poor adherence to rehabilitation programs may be explained by an increased BoT. This phenomenon can now be mapped to the ICF, and coded using a framework well known by multidisciplinary teams.

End-of-life care and preferences for place of death among the oldest old: results of a population-based survey using VOICES-Short Form.

BACKGROUND: End-of-life care (EOLC) is a key component in care of older people. However, evidence suggests that the oldest old (>85 years) are less likely to access specialist EOLC. OBJECTIVE: The study's objective was to explore experiences of EOLC among the oldest old and determine their reported preference for place of death. DESIGN: The study involved a self-completion postbereavement survey. METHODS: A census was taken of deaths registered between October 2009 and April 2010 in two health districts, identified from death certificates. Views of Informal Carers-Evalution of Service (VOICES)-Short Form was sent to each informant (n=1422, usually bereaved relative) 6 to 12 months after the death. RESULTS: Of 473 (33%) who responded, 48% of decedents were age 85 or over. There were no age differences in reported care quality in the last three months, but in the last two days the oldest old were reported to receive poorer relief of nonpain symptoms and less emotional and spiritual support. Compared to people under age 85, the over 85s were less likely to be reported to know they were dying, to have a record of their preferences for place of death, to die in their preferred place, to have enough choice about place of death-and more likely to be reported to have had unwanted treatment decisions. Being over 85 years was associated with a reduction in the odds of home death (OR=0.36); failure to ascertain and record preference for place of death contributed to this. CONCLUSIONS: Age-associated disparity exists in care provided in the last two days and the realization of preferences.

End-of-life care and achieving preferences for place of death in England: results of a population-based survey using the VOICES-SF questionnaire.

BACKGROUND/AIM: Health policy places emphasis on enabling patients to die in their place of choice, and increasing the proportion of home deaths. In this article, we seek to explore reported preferences for place of death and experiences of care in a population-based sample of deaths from all causes. DESIGN: Self-completion post-bereavement survey. SETTING/PARTICIPANTS: Census of deaths registered in two health districts between October 2009 and April 2010. Views of Informal Carers - Evaluation of Services Short Form was sent to each informant (n = 1422; usually bereaved relative) 6-12 months post-bereavement. RESULTS: Response was 33%. In all, 35.7% of respondents reported that the deceased said where they wanted to die, and 49.3% of these were reported to achieve this. Whilist 73.9% of those who were reported to have a preference cited home as the preferred place, only 13.3% of the sample died at home. Cancer patients were more likely to be reported to achieve preferences than patients with other conditions (p < .01). Being reported to have a record of preferences for place of death increased the likelihood of dying at home (odds ratio = 22.10). When rating care in the last 2 days, respondents were more likely to rate 'excellent' or 'good' for nursing care (p < .01), relief of pain (p < .01) and other symptoms (p < .01), emotional support (p < .01) and privacy of patient's environment (p < .01) if their relative died in their preferred place. CONCLUSIONS: More work is needed to encourage people to talk about their preferences at the end of life: this should not be restricted to those known to be dying. Increasing knowledge and achievement of preferences for place of death may also improve end-of-life care.

Participant recruitment in sensitive surveys: a comparative trial of 'opt in' versus 'opt out' approaches.

BACKGROUND: Although in health services survey research we strive for a high response rate, this must be balanced against the need to recruit participants ethically and considerately, particularly in surveys with a sensitive nature. In survey research there are no established recommendations to guide recruitment approach and an 'opt-in' system that requires potential participants to request a copy of the questionnaire by returning a reply slip is frequently adopted. However, in observational research the risk to participants is lower than in clinical research and so some surveys have used an 'opt-out' system. The effect of this approach on response and distress is unknown. We sought to investigate this in a survey of end of life care completed by bereaved relatives. METHODS: Out of a sample of 1422 bereaved relatives we assigned potential participants to one of two study groups: an 'opt in' group (n=711) where a letter of invitation was issued with a reply slip to request a copy of the questionnaire; or an 'opt out' group (n=711) where the survey questionnaire was provided alongside the invitation letter. We assessed response and distress between groups. RESULTS: From a sample of 1422, 473 participants returned questionnaires. Response was higher in the 'opt out' group than in the 'opt in' group (40% compared to 26.4%: χ(2) =29.79, p-value<.01), there were no differences in distress or complaints about the survey between groups, and assignment to the 'opt out' group was an independent predictor of response (OR=1.84, 95% CI: 1.45-2.34). Moreover, the 'opt in' group were more likely to decline to participate (χ(2)=28.60, p-value<.01) and there was a difference in the pattern of questionnaire responses between study groups. CONCLUSION: Given that the 'opt out' method of recruitment is associated with a higher response than the 'opt in' method, seems to have no impact on complaints or distress about the survey, and there are differences in the patterns of responses between groups, the 'opt out' method could be recommended as the most efficient way to recruit into surveys, even in those with a sensitive nature.

Botanical extracts as anti-aging preparations for the skin: a systematic review.

Although topical creams and other anti-aging products purport to reduce the appearance of aging and skin wrinkling, there has been no critical analysis in the scientific literature of their effectiveness. This systematic review critically evaluates the evidence for the effectiveness or efficacy of botanical treatments in reducing skin aging and wrinkling. MEDLINE, Embase, CINAHL®, CENTRAL and AMED databases were searched from their inception until October 2009. Reference lists of retrieved articles were hand-searched. Manufacturers and professional associations were contacted in order to identify further non-published studies. No language restrictions were applied. Only randomized clinical trials or controlled clinical trials assessing the effectiveness of botanical extracts in reducing wrinkling and aging of the skin were included. Data were extracted by two independent reviewers and methodological quality was assessed using the Jadad score and key aspects of the Cochrane risk of bias tool. Of 36 potentially relevant studies, 11 trials of botanical extracts for reducing skin wrinkling and the appearance of aging met all the inclusion criteria. No trials were identified following contact with anti-aging and cosmetic organizations, companies and professional bodies. A significant reduction in skin wrinkling was noted for date kernel extract, cork extract, soy extract, Rosaceae and peony extract. No significant reduction was noted for green tea, Vitaphenol® (a combination of green and white teas, mangosteen and pomegranate extract) or maca root. All trials were of poor methodological quality. Adverse effects were frequently not reported. In summary, there is some weak evidence to suggest that several botanical extracts may be effective in reducing the appearance of skin aging but no evidence that this effect is enduring. Independent replications with larger, more diverse samples, longer treatment durations and more rigorous study designs are required to validate these preliminary findings.

Inflammation in aging part 2: implications for the health of older people and recommendations for nursing practice.

Aging is accompanied by declining function and remodeling of body systems. In particular, changes to the immune and endocrine systems have far-reaching effects that cause an increase in cytokine release and decrease in anti-inflammatory feedback systems. The chronic inflammation that ensues has been named ''inflammaging.'' Inflammaging is associated with many detrimental effects that combine to increase morbidity and mortality. The sickness behavior that arises from inflammatory processes and the side effects of chronic diseases lead to a constellation of symptoms that decrease quality of life and affect the well-being of the individual. Part 2 of this two-part article provides an overview of the health effects of inflammaging, addressing the extent to which it contributes to the syndromes of frailty and disability with aging.

Inflammation in aging part 1: physiology and immunological mechanisms.

During the aging process, remodeling of several body systems occurs, and these changes can have a startling effect upon the immune system. The reduction in sex steroids and growth hormones and declines in vitamin D concentration that accompany the aging process are associated with increases in the baseline levels of inflammatory proteins. At the same time, inflammation arising from atherosclerosis and other chronic diseases further contributes to the inflammatory milieu and effects a state of chronic inflammation. This chronic inflammation, or ''inflammaging'' as it has been termed, seems to be associated with a host of adverse effects contributing to many of the health problems that increase morbidity and decrease both quality of life and the ability to maintain independence in old age. For nurses to be truly informed when caring for older people and to ensure that they have a detailed understanding of the complexities of older people's health needs, they must have a knowledge of the physiological and immunological changes with age. This is the first of a two-part article on inflammatory processes in aging. These age-related changes are presented here, including an examination of the impact of genetic and lifestyle factors. The effect of these changes on the health of the individual and implications for practice are described in Part 2.