Literatura académica sobre el tema "Supportive care in cancer"

9639 Background: With the growth of palliative medicine over the past decade, the paradigm of supportive care has evolved to create new standards for cancer patients. The aim of this study was to define “best supportive care” (BSC) during clinical trials of advanced solid tumors. Methods: Systematic review of the literature using Medline and the Cochrane Central Register of Controlled Trials databases. These were searched for randomized controlled trials in which anticancer therapy was compared with a BSC only arm. Results: A total of 43 studies met our inclusion criteria (publication dates, 1980–2008) with the following cancer types: 22 lung cancer, 6 colorectal, 6 pancreas, 2 gastric, and 7 other cancer types. Thirty-eight studies (88%) provided some definition of supportive care and sixteen studies (37%) used the term BSC. The average survival across treatment arms was 27.5 weeks. All but one study described the use of palliative therapies at the discretion of the treating physician without standardization. Over half of all studies (56%) specifically mentioned analgesics and radiotherapy (RT) for pain control. Other specific interventions listed were steroids (14), antibiotics (10), psychological support (10), nutritional support (9), blood transfusions (8), anti-emetics (6), and anti-depressant or anxiolytic medications (3). One-third of trials (15) reported an equivalent clinical evaluation schedule for both the BSC and treatment arms. Quality of life (QoL) was measured with a validated instrument (e.g., QLQ-30) in 55% of trials and 37% compared the utilization of at least one palliative treatment between groups. Trials using the term BSC were more likely to provide multidisciplinary therapy beyond RT and analgesics (50% vs. 19%; p<0.05). Conclusions: The management of subjects in a BSC arm of clinical trials are highly variable. Overall, the trials compare treatment versus no treatment as subjects in the BSC group likely did not receive care according to current palliative medicine standards. Future randomized clinical trials with a BSC arm should provide a comprehensive, multidisciplinary approach that is consistent with practice guidelines. A standardized BSC approach developed with palliative medicine specialists is warranted for further study. No significant financial relationships to disclose.

Lung cancer has developed from a rare condition into the leading cause of cancerrelated death in the United Kingdom. Lung cancer patients face a disease with a high symptom burden, increased psychosocial needs and a high mortality. Supportive care needs are often relevant from diagnosis. Despite this there are no clear follow-up structures for lung cancer patients that address both cancer management and supportive care. The aims of this study were to evaluate supportive care needs, assess predictors of such needs and identify factors which could aid service provision within Stobhill lung cancer services. Methods Supportive care needs were measured using an adapted Palliative Outcome Scale (POS), incorporated within a larger questionnaire. All lung cancer patients attending the clinic could complete this questionnaire. Respiratory symptoms, performance status, service usage, preferences and satisfaction were also assessed. Data were stratified to allow evaluation of three clinical groupings: all patients, newly diagnosed patients and patients in the last three months of life. Analyses were phased: descriptive analyses, univariate tests of association and multivariate regression. Results Three hundred and fifty three lung cancer patients completed questionnaires. The high symptom burden in lung cancer was confirmed. Anxiety, pain and dyspnoea were identified as the key issues. Poor performance status was identified to be an independent predictor of increased POS score, increased anxiety, increased pain and increased dyspnoea. There was no independent relationship between POS and survival. Although the majority of patients were satisfied with the care received, there was uncertainty regarding who was in charge of care and some disparity in preferred structure for follow-up. Conclusions Despite recent advances in lung cancer management, improvements are still required to address unmet supportive care needs of patients. Particular attention should be given to those with poorer performance status to effectively identify and meet such needs.

The purpose of the study was to describe the personal experience of individuals undergoing cancer treatment in an outpatient clinic by examining their perceived supportive care needs. The theoretical basis of the study lies in Alfred Adler's holistic view of human beings as unique and indivisible (1927/1954). Six individuals recently diagnosed with cancer were recruited from the same regional outpatient cancer clinic located at a major university medical center. A semi-structured interview process with open-ended questions was utilized to understand how people individually and collectively experience cancer and cancer treatment. The 17 factors of the wellness model (Witmer, Sweeney, & Myers, 1998) were used to assess the perceived supportive care needs of the study's participants. Data were analyzed using Interpretative Phenomenological Analysis (Smith, 1998) to ascertain emergent themes and interpret the meanings of the perceptions patients have of their cancer experience. The data resulted in eight major themes being present including facing mortality; uncertainty about the future; understanding cancer diagnosis and treatment; reliance on faith; maintaining control; love and support from family; physical impact of cancer; and importance of self-care. These themes provide insight into the perceived supportive care needs that patients experience during cancer treatment. With the exception of cultural and gender domains, the holistic assessment process identified patients' needs. The factors of wellness appear to capture the experience of individuals during cancer treatment. As an approach to assessing the coping skills of cancer patients, the wellness model seems appropriate for use by clinical mental health counselors. Implications for counselor theory, training, and practice with this unique client population are discussed.

The diagnosis and treatment of cancer can have a major impact on many aspects of health and well-being, with patients experiencing a variety of supportive care needs. In recognition of these needs, cancer policy internationally now acknowledges the importance of supportive care alongside clinical care. In order to reduce unmet supportive care needs among people with cancer, these unmet needs must first be quantified and then potential interventions to reduce unmet needs must be developed and tested. This thesis presents a series of studies which addresses the following aims: 1) To quantify and measure the unmet supportive care needs of people with colorectal cancer; 2) Ascertain the utility of a particular approach of supportive care service delivery, specifically nurse-delivered telephone supportive care; 3) To evaluate in a pilot study the novel nurse-delivered telephone supportive care intervention - CONNECT. Chapter One first provides an epidemiological perspective of colorectal cancer. Within Australia and NSW it is the second most common cancer, and cases in both jurisdictions have doubled in the last two decades. Within NSW, future modelling predicts that the number of new colorectal cancer cases in 2016 will represent a 19.5% increase from what was reported in 2007, and by 2036 will represent a 60.3% increase. Therefore the burden of this disease within the community will remain high. Chapter One next summarises the main treatment options for colorectal cancer, that is surgery, radiotherapy and chemotherapy. Clinical overviews of these treatment modalities are provided with the rationale for their use described. Advances in clinical management have improved post-operative mortality and survival outcomes of people treated for colorectal cancer. Therefore these survival improvements, coupled with increases in cases of colorectal cancer, will result in more people living with the outcomes of treatment. It is expected that in the future, disability due to colorectal cancer and its treatment will become a more important contributor to the burden of disease than mortality. The remainder of Chapter One then describes the range of adverse outcomes of colorectal cancer treatment. These include reductions in quality of life and specific morbidities such as pain, issues with wound healing, bowel, urinary and sexual dysfunction. The negative psychological consequences of treatment are also explored. Chapter One concludes by acknowledging that cancer treatment and treatment outcomes will result in a unique set of health care needs. Chapter Two introduces that health care need as a foundation to guide cancer service development and delivery. Despite the growing interest in health care need, there is little discourse of what is actually meant by the term ‘need’ and the underlying theoretical or conceptual basis of its measurement. Therefore a critical overview is presented in Chapter Two of the range of definitions and theories that seek to conceptualise what is meant by the term ‘need’. Need interpretations are described from psychological, humanitarian, social policy, academic and health care perspectives. The concept of unmet need is also introduced whereby unmet need is viewed as resource deficit. The findings of this review confirm that ‘need’ and ‘unmet need’ are conceptually different and distinct. Measurement of need is argued to be limited in scope as it only identifies potential problems. Need identification does not provide information about whether need has been met or whether current service interventions are successful at addressing and satisfying need. In contrast, ‘unmet need’ is considered a more patient relevant concept. It is indicative of where patient care is compromised and therefore is more relevant to health service development, as the focus of attention is on areas were service provision is inadequate, inaccessible or not in existence. Following this, Chapter Two concludes with a definition of the types of potential unmet needs that people with cancer could experience, in particular unmet supportive care needs. Supportive care is defined as an umbrella term that embraces the full range of needs, physical and psychosocial, that emerge for a patient due to the impact of cancer. Following this discussion of need and unmet need, Chapter Three describes the specific aims of this thesis. Chapter Four presents the results of a systematic review of the international literature in which the prevalence of unmet supportive care needs of people is described. The initial search identified 22,781 potentially relevant articles. However only 94 were found to be relevant to the research question and only 57 studies quantified unmet supportive care need. These studies were classified by specific time of the cancer illness, for example diagnosis, treatment and post-treatment. Prevalence of need was highly variable in all domains (ranging from 1% to 93%), across all time points and varied within and between studies. The most frequently reported unmet needs were those in the activities of daily living domain (1–73%), followed by psychological (12–85%), information (6–93%), psychosocial (1–89%) and physical (7–89%). Needs within the spiritual (14–51%), communication (2–57%) and sexuality (33–63%) domains were least frequently investigated. Compared to any other time points of the cancer illness, the treatment phase exhibited the largest variation in the prevalence of unmet need for each domain. However, unmet needs were more likely to be found in a larger proportion of people post-treatment. Trends and predictors were also highly variable across all time points. Tumour specific unmet needs were difficult to distinguish and notably, there is a significant lack of evidence pertaining to any specific unmet needs of people with colorectal cancer. The review also highlights the difficulties in gauging levels of unmet need given the varied study questionnaires used and differences in the classification of unmet need reporting methods. Further, a lack of standardised approach to reporting of the instruments precludes comparison of data from different sources. Accurate measurement of unmet need is essential to be able to monitor patients as they progress through their cancer illness and identify where additional support is required. It is also imperative that within supportive care trials unmet need is reliably assessed to determine the true efficacy of an intervention. Therefore, given the issues with unmet need measurement identified in Chapter Four, Chapter Five sought to provide a systematic overview of instruments that measure this concept. Eighteen instruments were identified and were classified as generic, need, cancer type or stage of illness specific. Based on the descriptions and psychometric properties of each instrument, the following recommendations are made for the most optimal instruments to measure unmet need in people with cancer from each category of instrument; the Supportive Care Needs Survey was considered to be the best generic instrument to measure unmet need, whereas the Prostate Cancer Needs Questionnaire and Needs Evaluation Questionnaire were the best available tumour and stage of disease specific assessments respectively. Chapter Six reports the findings from an empirical study to quantify colorectal cancer patients’ supportive care needs following their discharge after cancer surgery. As post-discharge needs are managed by a senior colorectal cancer nurse co-ordinator, a review of these occasions of service provides a measure of the level of unmet need. Nursing records for consecutive patients discharged from a quaternary referral colorectal cancer surgical unit in Sydney were reviewed. All non-admitted patient occasions of service (NAPOOS) were identified. Of 521 eligible patients, 219 (42%) received 988 postoperative NAPOOS. These were largely delivered over the telephone (72%) or during face-to-face contact at outpatient appointments (26%). Most NAPOOS were recorded within the first two weeks following discharge but some occurred beyond 6 months. Overall, 1369 specific unmet needs were identified during these NAPOOS. Ongoing support, reassurance and monitoring were required for 186 patients (85%). Physical needs relating to wound care and bowel function were prevalent for 15-20%, information needs for 20% and assistance organising follow-up appointments for 36% of the sample. Predictors of unmet need in this patient group were varied. Older patients (>65 years) were significantly less likely to record a NAPOOS (OR 0.97, 95%CI: 0.96-0.99) whilst people with rectal cancer were significantly more likely to report multiple NAPOOS (OR 2.80, 95%CI: 1.60-5.01) and physical needs (3.56, 95%CI: 2.03-.27). Rehabilitation needs were more likely to be expressed by emergency department admitted patients (AOR 2.23, 95%CI: 1.07-4.65). After adjusting for admission status, patients residing in capital cities were significantly less likely to experiences need in this domain (AOR 0.37, 95%CI: 0.20-0.70). Given that ad-hoc nurse-delivered supportive care by telephone is currently provided as described in Chapter Six, systematisation of this type of intervention holds promise to reduce unmet needs in this patient group. Chapter Seven presents a systematic review of studies which have evaluated nurse-delivered supportive care interventions. Critical appraisal of studies was conducted using standardised instruments namely the CONSORT statement for randomised trials and STROBE statement for non-randomised studies. Of 2,451 potentially relevant articles, only 13 studies were found to be relevant to the research question, comprising five randomised controlled trials and eight nonrandomised studies. All studies demonstrated that it is feasible to deliver supportive care over the telephone for people in follow-up for cancer. Furthermore, using a nurse to deliver such interventions was found to be acceptable to patients resulting in a positive experience. Some studies have highlighted that potentially, significant improvements can be made to patients’ quality of life, satisfaction with care and unmet information needs, but definitive conclusions could be recorded due to the variable methodological quality and reporting characteristics. Chapter Eight describes a nurse-led telephone intervention, the ‘CONNECT’ intervention and presents a randomised pilot study. CONNECT is delivered by a cancer nurse over the telephone in the six months following patients’ discharge from hospital after surgery. This intervention was designed to supplement exist follow-up strategies. The content of each CONNECT call is standardised to address supportive care domains of unmet need. To evaluate this intervention, patients with colorectal cancer at Royal Prince Alfred Hospital, Sydney were randomised to receive the telephone intervention (n=39) or usual follow-up care (n=36). Feasibility and acceptability of this service delivery approach were assessed as a primary outcome. Patient reported primary outcomes assessed included unmet supportive care needs, quality of life, psychological distress and health service utilisation. Outcomes assessments were assessed at baseline then at one, three and six months post-discharge using a series of postal or telephone questionnaires. The consent rate to this trial was 86%. The CONNECT intervention was shown to be feasible and successful in identifying patient unmet needs. Between 84% and 95% of intervention group patients completed each CONNECT call with the nurse, where a range of unmet needs were identified. Feedback from participants about the intervention was extremely positive. The reassurance, support and sense that someone was monitoring individual needs during each call were seen as benefits of this service. Statistically significant differences between study groups in terms of all patient reported outcomes eluded this evaluation. Scores and changes scores for unmet need, quality of life, psychological distress and health service utilisation were comparable between groups. However scores favoured the intervention group. For example, at three months total SCNS-SF34 scores for intervention group was 98.1 and 110.0 for the control group. At six month total CaSUN scores were 10.0 (intervention) and 14.0 (control). Trends over time for these outcomes were also not statistically significantly different between groups. However some clinically relevant findings from this evaluation were demonstrated. Total FACT-C scores at six months showed that intervention group participants reported higher quality of life compared to control group participants (106.0 versus 98.6). Whilst not statistically different, the findings were in the expected direction and the difference (7.4) between the groups is clinically relevant. The most promising development from utilisation data was the difference, favouring the intervention group, resulting in a ≥10% reduction in presentations to emergency departments and readmission rates to hospital. Given this trial was a pilot study, post-hoc power was ascertained. This found that despite an a priori sample size calculation, the trial was underpowered. This may have resulted in a false negative result. Chapter Nine provides an overview of the key findings from the series of studies undertaken in this thesis. The implications of study results are explored in relation to policy, clinical practice and research.

Gynaecological cancer survivorship has been addressed in only a limited body of research. After completion of treatment, women with gynaecological cancer face many challenges. It is pertinent that we understand the wellbeing and morbidity issues of this group of survivors, as well as their supportive care needs and use. With this understanding, it will be possible to better target health care initiatives and services to those gynaecological cancer survivors who require help. Accordingly, the objectives of this study were to determine the prevalence of site-specific morbidities, support being utilised, and unmet needs, as well as to determine the correlates of supportive care needs and use. To address this, a cross-sectional mail survey of 1774 Queensland gynaecological cancer survivors three months to five years post-diagnosis was conducted in 2004 (56.5% response rate, n=802 of 1420 eligible participants). Women were recruited from the Queensland Gynaecological Cancer Registry, which covered approximately 85% of all gynaecological cancer patients in Queensland at the time of this study. The questionnaire measured a range of factors to reflect a social-ecological perspective. This broader perspective was utilised to extend the current understanding which is limited to a biopsychosocial approach. Main outcomes were measured with standardised and validated instruments where possible, including the Supportive Care Needs Survey, Functional Assessment of Cancer Therapy, Duke-UNC Functional Social Support Questionnaire and the Active Australia Survey. The results of this survey showed that while quality of life was high on average (median 91, range 30-108), some women experienced debilitating site-specific conditions. Ten percent reported being diagnosed with lower limb lymphoedema and eight percent of women reported that their gynaecological cancer had made sexual relations too difficult or too uncomfortable. Women accessed multiple sources of support within their communities including a variety of support services (54%) and complementary therapies (29%). Characteristics associated with use of support services include: younger age, being retired, having been diagnosed with a gynaecological cancer other than uterine, having had open bowel resection, having been treated at multiple centres, being in remission, being obese. On average, women reported having excellent social support (median 37, range 8-40). Some women made changes to healthier behaviours following their cancer diagnosis, such as increasing their fruit and vegetable intake (23%) or physical activity levels (10%) or decreasing their alcohol consumption (24%) or cigarette smoking (10%); however, nearly half (44%) of women decreased their physical activity level. A population comparison of health behaviours between gynaecological cancer survivors and Queensland women highlighted the significantly lower level of sufficient physical activity and higher level of obesity in the cancer survivor population, as well as the low levels of adequate vegetable intake in both populations. Forty-three percent of gynaecological cancer survivors reported having at least one moderate or high level unmet supportive care need. In particular, needing help with fear about the cancer spreading, concerns about the worries of those close to them, uncertainty about the future, lack of energy/tiredness, and not being able to do things they used to do, were most important to this group. These leading need items were all within the psychological and physical/daily living supportive care domains. Some unmet sexuality and health system/information needs were also reported. Groups with higher odds of unmet needs included those women who more recently completed treatment, whose disease was still present, who had children still living in the home, who had diagnosed lymphoedema, who experienced treatment-related menopause, who were unable to work due to illness and who lived in rural and remote regions of Queensland. These results indicate that women with gynaecological cancer in Queensland are doing quite well overall; however, there is still room for improvement in a few key areas of public health importance. In line with the social-ecological model, resources need to be targeted at all levels of support including personal, social, health care and broader organisational, community, policy and media levels. In particular, the following recommendations are made: 1. Assistance with the particular reported unmet psychological and physical/daily living needs is a priority. Support services should be tailored to the identified groups of survivors who had higher odds of unmet needs, both in terms of development of written materials that reflect these groups' circumstances and implementation of programs or workshops specific to these groups. In particular, the development of a number of programs or workshops are recommended that discuss the specific psychological and physical/ daily living outcomes of women who a) live with cancer, b) live with children after cancer treatment, c) live with lymphoedema, d) have had treatment-related menopause or e) are unable to work due to illness, and how and where women can get help with managing these. These programs should be implemented by support organisations in the period closely following treatment completion and should consider technologies such as video-conferencing to reach women who are in rural and remote areas. 2. More specific written information for cancer survivors about things they can do to help themselves get well is needed, in lay-person friendly format. This information should address the value of particular dietary items, complementary therapies and types of physical activities that are safe and beneficial to cancer survivors' quality of life. 3. An evidenced-based physical activity intervention, targeting overweight and obese gynaecological cancer survivors is recommended, to reduce the weight issues of this population. 4. To facilitate the triage of cancer survivors to appropriate health care information and other support initiatives, cancer survivors' awareness of the Queensland Cancer Fund needs to be raised substantially. Practitioner education and discharge planning directives are recommended to ensure information about the Queensland Cancer Fund is disseminated. 5. To address the substantially unmet information and physical/ daily living needs specific to lymphoedema sufferers, it is recommended that self-management information and referral information for suppliers and services for lymphoedema management be given to women in high lymphoedema risk groups, as part of the hospital discharge procedure, as well as when symptoms are diagnosed, to ensure a continuum of care is maintained. 6. Clinical practice guidelines for cancer care and, correspondingly, support programs, need to expand from acute care to managing the long-term psychological, physical and sexual health consequences. Several topics for research are likely to be important in the future, including more specific research into why uterine cancer survivors reported higher odds of unmet psychological needs and yet were less likely to use support services, what specific help women with unmet needs would prefer, the effects of lower limb lymphoedema on survivors' quality of life, and why there isn't greater use of existing support services, especially among women with morbidity such as lymphoedema and issues associated with treatment-related menopause.

Gynaecological cancer survivorship has been addressed in only a limited body of research. After completion of treatment, women with gynaecological cancer face many challenges. It is pertinent that we understand the wellbeing and morbidity issues of this group of survivors, as well as their supportive care needs and use. With this understanding, it will be possible to better target health care initiatives and services to those gynaecological cancer survivors who require help. Accordingly, the objectives of this study were to determine the prevalence of site-specific morbidities, support being utilised, and unmet needs, as well as to determine the correlates of supportive care needs and use. To address this, a cross-sectional mail survey of 1774 Queensland gynaecological cancer survivors three months to five years post-diagnosis was conducted in 2004 (56.5% response rate, n=802 of 1420 eligible participants). Women were recruited from the Queensland Gynaecological Cancer Registry, which covered approximately 85% of all gynaecological cancer patients in Queensland at the time of this study. The questionnaire measured a range of factors to reflect a social-ecological perspective. This broader perspective was utilised to extend the current understanding which is limited to a biopsychosocial approach. Main outcomes were measured with standardised and validated instruments where possible, including the Supportive Care Needs Survey, Functional Assessment of Cancer Therapy, Duke-UNC Functional Social Support Questionnaire and the Active Australia Survey. The results of this survey showed that while quality of life was high on average (median 91, range 30-108), some women experienced debilitating site-specific conditions. Ten percent reported being diagnosed with lower limb lymphoedema and eight percent of women reported that their gynaecological cancer had made sexual relations too difficult or too uncomfortable. Women accessed multiple sources of support within their communities including a variety of support services (54%) and complementary therapies (29%). Characteristics associated with use of support services include: younger age, being retired, having been diagnosed with a gynaecological cancer other than uterine, having had open bowel resection, having been treated at multiple centres, being in remission, being obese. On average, women reported having excellent social support (median 37, range 8-40). Some women made changes to healthier behaviours following their cancer diagnosis, such as increasing their fruit and vegetable intake (23%) or physical activity levels (10%) or decreasing their alcohol consumption (24%) or cigarette smoking (10%); however, nearly half (44%) of women decreased their physical activity level. A population comparison of health behaviours between gynaecological cancer survivors and Queensland women highlighted the significantly lower level of sufficient physical activity and higher level of obesity in the cancer survivor population, as well as the low levels of adequate vegetable intake in both populations. Forty-three percent of gynaecological cancer survivors reported having at least one moderate or high level unmet supportive care need. In particular, needing help with fear about the cancer spreading, concerns about the worries of those close to them, uncertainty about the future, lack of energy/tiredness, and not being able to do things they used to do, were most important to this group. These leading need items were all within the psychological and physical/daily living supportive care domains. Some unmet sexuality and health system/information needs were also reported. Groups with higher odds of unmet needs included those women who more recently completed treatment, whose disease was still present, who had children still living in the home, who had diagnosed lymphoedema, who experienced treatment-related menopause, who were unable to work due to illness and who lived in rural and remote regions of Queensland. These results indicate that women with gynaecological cancer in Queensland are doing quite well overall; however, there is still room for improvement in a few key areas of public health importance. In line with the social-ecological model, resources need to be targeted at all levels of support including personal, social, health care and broader organisational, community, policy and media levels. In particular, the following recommendations are made: 1. Assistance with the particular reported unmet psychological and physical/daily living needs is a priority. Support services should be tailored to the identified groups of survivors who had higher odds of unmet needs, both in terms of development of written materials that reflect these groups' circumstances and implementation of programs or workshops specific to these groups. In particular, the development of a number of programs or workshops are recommended that discuss the specific psychological and physical/ daily living outcomes of women who a) live with cancer, b) live with children after cancer treatment, c) live with lymphoedema, d) have had treatment-related menopause or e) are unable to work due to illness, and how and where women can get help with managing these. These programs should be implemented by support organisations in the period closely following treatment completion and should consider technologies such as video-conferencing to reach women who are in rural and remote areas. 2. More specific written information for cancer survivors about things they can do to help themselves get well is needed, in lay-person friendly format. This information should address the value of particular dietary items, complementary therapies and types of physical activities that are safe and beneficial to cancer survivors' quality of life. 3. An evidenced-based physical activity intervention, targeting overweight and obese gynaecological cancer survivors is recommended, to reduce the weight issues of this population. 4. To facilitate the triage of cancer survivors to appropriate health care information and other support initiatives, cancer survivors' awareness of the Queensland Cancer Fund needs to be raised substantially. Practitioner education and discharge planning directives are recommended to ensure information about the Queensland Cancer Fund is disseminated. 5. To address the substantially unmet information and physical/ daily living needs specific to lymphoedema sufferers, it is recommended that self-management information and referral information for suppliers and services for lymphoedema management be given to women in high lymphoedema risk groups, as part of the hospital discharge procedure, as well as when symptoms are diagnosed, to ensure a continuum of care is maintained. 6. Clinical practice guidelines for cancer care and, correspondingly, support programs, need to expand from acute care to managing the long-term psychological, physical and sexual health consequences. Several topics for research are likely to be important in the future, including more specific research into why uterine cancer survivors reported higher odds of unmet psychological needs and yet were less likely to use support services, what specific help women with unmet needs would prefer, the effects of lower limb lymphoedema on survivors' quality of life, and why there isn't greater use of existing support services, especially among women with morbidity such as lymphoedema and issues associated with treatment-related menopause.

Having a cancer diagnosis during early adulthood can bring significant challenges. It is important to provide supportive care with consideration of their developmental challenges. Nurses’ supportive communication plays a vital role in helping them cope and adjust to the life-changing event of cancer. This study aimed to explore the therapeutic communication between nurses and young people diagnosed with cancer, focusing on those aged between 18 and 25 (developmental literature termed this group emerging adults). In-depth interviews with eight emerging adults with cancer (EAs) and seven nurses were undertaken. Findings revealed that EAs greatly benefited from the informal conversations they had with nurses on a day-to-day basis. They established trust-based relationship with nurses from which therapeutic processes occurred organically. These informal conversations, which on the surface seemed clinically insignificant, fulfilled these young individuals’ basic psychosocial needs such as feelings of belongingness, connectedness, and acceptance. These conversations also helped them regain a sense of control and normality by talking about and making sense of their experiences. Nurses engaged in informal conversations with EAs with a therapeutic intention. For them, it was a way to ease EAs into the hospital environment and also to learn about the needs of each EA in order to provide tailored support. Challenges such as emotional exhaustion, inherent in the interpersonal nature of therapeutic communication, were noted. Some of the participants, however, learnt to draw appropriate professional boundaries that enabled them to provide compassionate therapeutic communication with EAs while protecting their own emotional wellbeing. The study documents the nature of therapeutic communication through the perspectives of EAs and nurses. It highlighted the benefit of therapeutic communication which happens at an informal, day-to-day level. Nurses and health organisations would benefit from understanding the value of the therapeutic benefits of informal conversations during the care of EAs. The findings also suggested that nurses need to build their capacities relating to therapeutic communication such as emotional regulation skills, resiliency, and the ability to maintain healthy boundaries with EAs.

Most patients with pancreatic cancer will present with metastatic or locally advanced disease. Unfortunately, most patients with localized disease will experience recurrence even after multimodality therapy. As such, pancreatic cancer patients arrive at a common endpoint where decisions pertaining to palliative care come to the forefront. This article summarizes surgical, endoscopic, and other palliative techniques for relief of obstructive jaundice, relief of duodenal or gastric outlet obstruction, and relief of pain due to invasion of the celiac plexus. It also introduces the utility of the palliative care triangle in clarifying a patient's and family's goals to guide decision making.

Although provision of palliative care on the United States is growing, referrals to the service are often late or non-existent. The simultaneous care model provides a blueprint for the most progressive form of palliative care, which is palliation and disease-oriented treatments delivered concurrently. Research indicates the existence of a widespread misconception that associates palliative care with imminent death, and some organizations have chosen to re-brand their palliative care services to influence this perception. The goal of this study was to assess the effects of a name change from palliative care to supportive care on the communicative process during referrals to the service.

This mixed methods PhD project explored the health service and supportive care needs of women with advanced breast cancer in Ghana from their perceptions as well as from those of relevant healthcare professionals and key informants from breast cancer organisations. The thesis provides evidence that this cohort has numerous and complex needs. The project’s findings can help guide health policy and the development of evidence-based tailored health and supportive care services, programs and interventions in Ghana to address these women’s needs, which will empower the women to better manage their day-to-day lives to maintain and/or improve their quality of life.

Review question / Objective: This study undertook a meta-synthesis of qualitative data with the aim of collating, synthesizing, and evaluating the current evidence regarding the experiences of singing for people with advanced chronic respiratory disease. Condition being studied: Advanced respiratory illnesses are disorders that impact the airways and other structures of the lung. People with lung cancer, chronic obstructive pulmonary disease (COPD) and interstitial lung disease (ILD) frequently experience progressive, frightening breathlessness, cough and fatigue, which affect their quality of life. Furthermore, people with advanced chronic respiratory disease (CRD) and their carers experience a high prevalence of loneliness and uncertainty, especially if breathlessness is felt to herald death and thus, require both psychological and practical supportive care to cope with their symptoms.

• Older adults have complex and unique needs that can influence how and when cancer is diagnosed, the types of treatment that are offered, how well treatment is tolerated and treatment outcomes. • This Evidence Check review identified 41 studies that specifically addressed barriers and enablers to cancer screening, diagnosis and treatment among adults aged 65 years and older. • Question 1: The main barriers for older people at risk of and/or living with cancer to access and participate in timely cancer screening relate to lack of knowledge, fear of cancer, negative beliefs about the consequences of cancer, and hygiene concerns in completing testing. The main enablers to participation in timely cancer screening include positive/helpful beliefs about screening, social influences that encourage participation and knowledge. • Question 2: The main barriers for older people at risk of and/or living with cancer to access and/or seek timely cancer diagnosis relate to lack of knowledge of the signs and symptoms of cancer that are distinct from existing conditions and ageing, healthcare accessibility difficulties, perceived inadequate clinical response from healthcare providers, and harmful patient beliefs about risk factors and signs of cancer. The main enablers to accessing and/or seeking a timely cancer diagnosis include knowledge of the signs and symptoms of cancer, and support from family and friends that encourage help-seeking for symptoms. • Question 3: The main barriers for older people at risk of and/or living with cancer in accessing and completing cancer treatment include discrimination against patients in the form of ageism, lack of knowledge, patient concern about the adverse effects of treatment, predominantly on their independence, healthcare accessibility difficulties including travel and financial burden, and patients’ caring responsibilities. The main enablers to accessing and completing cancer treatment are social support from peers in a similar situation, family and friends, the influence of healthcare providers, and involving patients in treatment decision making. • Implications. The development of strategies to address the inequity of cancer outcomes in people aged 65 years and older in NSW should consider: ­ Increasing community members’ and patients’ knowledge and awareness by providing written information and decision support tools from a trusted source ­ Reducing travel and financial burden by widely disseminating information about existing support schemes and expanding remote patient monitoring and telehealth ­ Improving social support by promoting peer support, and building the support capacity of family carers ­ Addressing ageism by supporting patients in decision making, and disseminating education initiatives about geriatric oncology to healthcare providers ­ Providing interdisciplinary geriatric oncology care by including a geriatrician as part of multidisciplinary teams and/or expanding geriatric oncology clinics.

Population aging is a global phenomenon that has presented capacity and resource challenges for providing supportive care environments for older people in later life (Bone et al., 2018, Finucane et al., 2019). Aging-in-place was introduced as a policy driver for creating supportive environmental and social care to enable individuals to live independently at home and in the community for as long as possible. Recently, there has been a move towards offering care for people with a terminal illness at home and in the community (Shepperd et al., 2016); and when appropriate, to die in supportive, home-like environments such as care homes (Wada et al., 2020). Aging-in-place principles can, thus and, should be extended to enabling supportive, home-like environments at the end-of-life. Yet, first, we must consider the appropriateness, availability and diversity of options for community-based palliative and end-of-life care (PEoLC), in order to optimise supports for older people who are dying at home or within long-term/residential care environments. Globally, across places with similar health and social care systems and service models such as in Scotland and in Canada, community-based PEoLC options are currently not uniformly available. Given that people entering into long-term/residential care homes are increasingly closer to the end of life, there is now an even greater demand for PEoLC provision in residential facilities (Kinley et al., 2017). Although most reported deaths occur within an inpatient hospital setting (50%), the proportion of overall deaths in a care home setting is projected to increase from 18% to 22.5% (Finucane et al, 2019). This suggests that long-term/residential care homes are to become the most common place of death by 2040, evidencing the need to develop and sustain appropriate and compassionate PEoLC to support those who are able to die at home and those living in residential care facilities (Bone et al., 2018; Finucane et al., 2019). This research initiative is premised on the notion that aging in place matters throughout the life-course, including at the end-of-life and that the socio-environmental aspects of care homes need to enable this.

Background Australia is a multi-cultural society with increasing rates of people from culturally and linguistically diverse (CALD) backgrounds. On average, CALD groups have higher rates of tobacco use, lower participation in cancer screening programs, and poorer health outcomes than the general Australian population. Lower cancer screening and smoking cessation rates are due to differing cultural norms, health-related attitudes, and beliefs, and language barriers. Interventions can help address these potential barriers and increase tobacco cessation and cancer screening rates among CALD groups. Cancer Council NSW (CCNSW) aims to reduce the impact of cancer and improve cancer outcomes for priority populations including CALD communities. In line with this objective, CCNSW commissioned this rapid review of interventions implemented in Australia and comparable countries. Review questions This review aimed to address the following specific questions: Question 1 (Q1): What smoking cessation interventions have been proven effective in reducing or preventing smoking among culturally and linguistically diverse communities? Question 2 (Q2): What screening interventions have proven effective in increasing participation in population cancer screening programs among culturally and linguistically diverse populations? This review focused on Chinese-, Vietnamese- and Arabic-speaking people as they are the largest CALD groups in Australia and have high rates of tobacco use and poor screening adherence in NSW. Summary of methods An extensive search of peer-reviewed and grey literature published between January 2013-March 2022 identified 19 eligible studies for inclusion in the Q1 review and 49 studies for the Q2 review. The National Health and Medical Research Council (NHMRC) Levels of Evidence and Joanna Briggs Institute’s (JBI) Critical Appraisal Tools were used to assess the robustness and quality of the included studies, respectively. Key findings Findings are reported by components of an intervention overall and for each CALD group. By understanding the effectiveness of individual components, results will demonstrate key building blocks of an effective intervention. Question 1: What smoking cessation interventions have been proven effective in reducing or preventing smoking among culturally and linguistically diverse communities? Thirteen of the 19 studies were Level IV (L4) evidence, four were Level III (L3), one was Level II (L2), none were L1 (highest level of evidence) and one study’s evidence level was unable to be determined. The quality of included studies varied. Fifteen tobacco cessation intervention components were included, with most interventions involving at least three components (range 2-6). Written information (14 studies), and education sessions (10 studies) were the most common components included in an intervention. Eight of the 15 intervention components explored had promising evidence for use with Chinese-speaking participants (written information, education sessions, visual information, counselling, involving a family member or friend, nicotine replacement therapy, branded merchandise, and mobile messaging). Another two components (media campaign and telephone follow-up) had evidence aggregated across CALD groups (i.e., results for Chinese-speaking participants were combined with other CALD group(s)). No intervention component was deemed of sufficient evidence for use with Vietnamese-speaking participants and four intervention components had aggregated evidence (written information, education sessions, counselling, nicotine replacement therapy). Counselling was the only intervention component to have promising evidence for use with Arabic-speaking participants and one had mixed evidence (written information). Question 2: What screening interventions have proven effective in increasing participation in population cancer screening programs among culturally and linguistically diverse populations? Two of the 49 studies were Level I (L1) evidence, 13 L2, seven L3, 25 L4 and two studies’ level of evidence was unable to be determined. Eighteen intervention components were assessed with most interventions involving 3-4 components (range 1-6). Education sessions (32 studies), written information (23 studies) and patient navigation (10 studies) were the most common components. Seven of the 18 cancer screening intervention components had promising evidence to support their use with Vietnamese-speaking participants (education sessions, written information, patient navigation, visual information, peer/community health worker, counselling, and peer experience). The component, opportunity to be screened (e.g. mailed or handed a bowel screening test), had aggregated evidence regarding its use with Vietnamese-speaking participants. Seven intervention components (education session, written information, visual information, peer/community health worker, opportunity to be screened, counselling, and branded merchandise) also had promising evidence to support their use with Chinese-speaking participants whilst two components had mixed (patient navigation) or aggregated (media campaign) evidence. One intervention component for use with Arabic-speaking participants had promising evidence to support its use (opportunity to be screened) and eight intervention components had mixed or aggregated support (education sessions, written information, patient navigation, visual information, peer/community health worker, peer experience, media campaign, and anatomical models). Gaps in the evidence There were four noteworthy gaps in the evidence: 1. No systematic review was captured for Q1, and only two studies were randomised controlled trials. Much of the evidence is therefore based on lower level study designs, with risk of bias. 2. Many studies provided inadequate detail regarding their intervention design which impacts both the quality appraisal and how mixed finding results can be interpreted. 3. Several intervention components were found to have supportive evidence available only at the aggregate level. Further research is warranted to determine the interventions effectiveness with the individual CALD participant group only. 4. The evidence regarding the effectiveness of certain intervention components were either unknown (no studies) or insufficient (only one study) across CALD groups. This was the predominately the case for Arabic-speaking participants for both Q1 and Q2, and for Vietnamese-speaking participants for Q1. Further research is therefore warranted. Applicability Most of the intervention components included in this review are applicable for use in the Australian context, and NSW specifically. However, intervention components assessed as having insufficient, mixed, or no evidence require further research. Cancer screening and tobacco cessation interventions targeting Chinese-speaking participants were more common and therefore showed more evidence of effectiveness for the intervention components explored. There was support for cancer screening intervention components targeting Vietnamese-speaking participants but not for tobacco cessation interventions. There were few interventions implemented for Arabic-speaking participants that addressed tobacco cessation and screening adherence. Much of the evidence for Vietnamese and Arabic-speaking participants was further limited by studies co-recruiting multiple CALD groups and reporting aggregate results. Conclusion There is sound evidence for use of a range of intervention components to address tobacco cessation and cancer screening adherence among Chinese-speaking populations, and cancer screening adherence among Vietnamese-speaking populations. Evidence is lacking regarding the effectiveness of tobacco cessation interventions with Vietnamese- and Arabic-speaking participants, and cancer screening interventions for Arabic-speaking participants. More research is required to determine whether components considered effective for use in one CALD group are applicable to other CALD populations.

This Evidence Check examines how clinicians’ experience of providing healthcare has been defined and measured. The review was conducted within the context of substantial change and innovation within NSW Health, focusing on the clinical and supportive care aspects of the clinician role. The research found was limited and mainly qualitative. Clinician experience was either defined inconsistently or not defined at all. However, the research did show that clinician experience was complex, involving both individual psychology and organisational outcomes. Few survey questionnaires had been developed to measure clinician experience, and those that had were either focused on the situation in a particular time and place rather than being suitable for use across a wide variety of contexts in healthcare, or focused only on a narrow aspect of clinician experience. Overall, the review shows a relatively underdeveloped area of research, in need of more focus to enable policy-makers to better understand clinician experience.