Information interventions for orienting patients and their carers to cancer care facilities

Background: Cancer patients experience distress and anxiety related to their diagnosis, treatment and the unfamiliar cancer centre. Strategies with the aim of orienting patients to a cancer care facility may improve patient outcomes. Although meeting patients' information needs at different stages is important, there is little agreement about the type of information and the timing for information to be given. Orientation interventions aim to address information needs at the start of a person's experience with a cancer care facility. The extent of any benefit of these interventions is unknown. Objectives: To assess the effects of information interventions which orient patients and their carers/family to a cancer care facility, and to the services available in the facility. Search Methods: We searched the Cochrane Central Register of Controlled Trials (CENTRAL) (The Cochrane Library 2011, Issue 2); MEDLINE (OvidSP) (1966 to Jun 2011), EMBASE (Ovid SP) (1966 to Jun 2011), CINAHL (EBSCO) (1982 to Jun 2011), PsycINFO (OvidSP) (1966 to Jun 2011), review articles and reference lists of relevant articles. We contacted principal investigators and experts in the field. Selection Criteria: Randomised controlled trials (RCTs), cluster RCTs and quasi-RCTs evaluating the effects of information interventions that orient patients and their carers/family to a cancer care facility. Data collection and analysis: Results of searches were reviewed against the pre-determined criteria for inclusion by two review authors. The primary outcomes were knowledge and understanding; health status and wellbeing, evaluation of care, and harms. Secondary outcomes were communication, skills acquisition, behavioural outcomes, service delivery, and health professional outcomes. We pooled results of RCTs using mean differences (MD) and 95% confidence intervals (CI). Main results: We included four RCTs involving 610 participants. All four trials aimed to investigate the effects of orientation programs for cancer patients to a cancer facility. There was high risk of bias across studies. Findings from two of the RCTs demonstrated significant benefits of the orientation intervention in relation to levels of distress (mean difference (MD) -8.96 (95% confidence interval (CI) -11.79 to -6.13), but non-significant benefits in relation to state anxiety levels (MD -9.77 (95% CI -24.96 to 5.41). Other outcomes for participants were generally positive (e.g. more knowledgeable about the cancer centre and cancer therapy, better coping abilities). No harms or adverse effects were measured or reported by any of the included studies. There were insufficient data on the other outcomes of interest. Authors conclusion: This review has demonstrated the feasibility and some potential benefits of orientation interventions. There was a low level of evidence suggesting that orientation interventions can reduce distress in patients. However, most of the other outcomes remain inconclusive (patient knowledge recall/ satisfaction). The majority of studies were subject to high risk of bias, and were likely to be insufficiently powered. Further well conducted and powered RCTs are required to provide evidence for determining the most appropriate intensity, nature, mode and resources for such interventions. Patient and carer-focused outcomes should be included.

Value co-creation in social marketing wellness services

Customer perceived value is concerned with the experiences of consumers when using a service and is often referred to in the context of service provision or on the basis of service quality (Auh, et al., 2007; Chang, 2008; Jackson, 2007; Laukkanen, 2007; Padgett & Mulvey, 2007; Shamdasani, Mukherjee & Malhotra, 2008). Understanding customer perceived value has benefits for social marketing and allows scholars and practitioners alike to identify why consumers engage in positive social behaviours through the use of services. Understanding consumers’ use of wellness services in particular is important, because the use of wellness services demonstrates the fulfilment of social marketing aims; performing pro-active, positive social behaviours that are of benefit to the individual and to society (Andreasen, 1994). As consumers typically act out of self-interest (Rothschild, 1999), this research posits that a value proposition must be made to consumers in order to encourage behavioural change. Thus, this research seeks to identify how value is created for consumers of wellness services in social marketing. This results in the overall research question of this research: How is value created in social marketing wellness services? A traditional method towards understanding value has been the adoption of an economic approach, which considers the utility gained and where value is a direct outcome of a cost-benefit analysis (Payne & Holt, 1999). However, there has since been a shift towards the adoption of an experiential approach in understanding value. This experiential approach considers the consumption experience of the consumer which extends beyond the service exchange and includes pre- and post-consumption stages (Russell-Bennett, Previte & Zainuddin, 2009). As such, this research uses an experiential approach to identify the value that exists in social marketing wellness services. Four dimensions of value have been commonly conceptualised and identified in the commercial marketing literature; functional, emotional, social, and altruistic value (Holbrook, 1994; Sheth, Newman & Gross, 1991; Sweeney & Soutar, 2001). It is not known if these value dimensions also exist in social marketing. In addition, sources of value said to influence value dimensions have been conceptualised in the literature. Sources of value such as information, interaction, environment, service, customer co-creation, and social mandate have been conceptually identified both in the commercial and social marketing literature (Russell-Bennet, Previte & Zainuddin, 2009; Smith & Colgate, 2007). However, it is not clear which sources of value contribute to the creation of value for users of wellness services. Thus, this research seeks to explore these relationships. This research was conducted using a wellness service context, specifically breast cancer screening services. The primary target consumer of these services is women aged 50 to 69 years old (inclusive) who have never been diagnosed with breast cancer. It is recommended that women in this target group have a breast screen every 2 years in order to achieve the most effective medical outcomes from screening. A two-study mixed method approach was utilised. Study 1 was a qualitative exploratory study that analysed individual-depth interviews with 25 information-rich respondents. The interviews were transcribed verbatim and analysed using NVivo 8 software. The qualitative results provided evidence of the existence of the four value dimensions in social marketing. The results also allowed for the development of a typology of experiential value by synthesising current understanding of the value dimensions, with the activity aspects of experiential value identified by Holbrook (1994) and Mathwick, Malhotra and Rigdon (2001). The qualitative results also provided evidence for the existence of sources of value in social marketing, namely information, interaction, environment and consumer participation. In particular, a categorisation of sources of value was developed as a result of the findings from Study 1, which identify organisational, consumer, and third party sources of value. A proposed model of value co-creation and a set of hypotheses were developed based on the results of Study 1 for further testing in Study 2. Study 2 was a large-scale quantitative confirmatory study that sought to test the proposed model of value co-creation and the hypotheses developed. An online-survey was administered Australia-wide to women in the target audience. A response rate of 20.1% was achieved, resulting in a final sample of 797 useable responses after removing ineligible respondents. Reliability and validity analyses were conducted on the data, followed by Exploratory Factor Analysis (EFA) in PASW18, followed by Confirmatory Factor Analysis (CFA) in AMOS18. Following the preliminary analyses, the data was subject to Structural Equation Modelling (SEM) in AMOS18 to test the path relationships hypothesised in the proposed model of value creation. The SEM output revealed that all hypotheses were supported, with the exception of one relationship which was non-significant. In addition, post hoc tests revealed seven further significant non-hypothesised relationships in the model. The quantitative results show that organisational sources of value as well as consumer participation sources of value influence both functional and emotional dimensions of value. The experience of both functional and emotional value in wellness services leads to satisfaction with the experience, followed by behavioural intentions to perform the behaviour and use the service again. One of the significant non-hypothesised relationships revealed that emotional value leads to functional value in wellness services, providing further empirical evidence that emotional value features more prominently than functional value for users of wellness services. This research offers several contributions to theory and practice. Theoretically, this research addresses a gap in the literature by using social marketing theory to provide an alternative method of understanding individual behaviour in a domain that has been predominantly investigated in public health. This research also clarifies the concept of value and offers empirical evidence to show that value is a multi-dimensional construct with separate and distinct dimensions. Empirical evidence for a typology of experiential value, as well as a categorisation of sources of value is also provided. In its practical contributions, this research identifies a framework that is the value creation process and offers health services organisations a diagnostic tool to identify aspects of the service process that facilitate the value creation process.

Exercise for breast cancer survivors: bridging the gap between evidence and practice

Evidence supporting the benefits of exercise following the diagnosis of breast cancer is overwhelming and compelling. Exercise reduces the severity and number of treatment-related side effects, optimizes quality of life during and following treatment, and may optimize survival. Yet, exercise does not uniformly form part of the standards of care provided to women following a breast cancer diagnosis. This commentary summarizes the evidence in support of exercise as a form of adjuvant treatment and identifies and discusses potential issues preventing the formal integration of exercise into breast cancer care. Proposed within the commentary is a model of breast cancer care that incorporates exercise prescription as a key component but also integrates the need for surveillance and management for common breast cancer treatment-related morbidities, as well as education. While future research evaluating the potential cost savings through implementation of such amodel is required, a committed, collaborative approach by clinicians, allied health professionals, and researchers will be instrumental in bridging the gap between research and practice.

A randomized trial of a telephone-delivered exercise intervention for non-urban dwelling women newly diagnosed with breast cancer : exercise for health

Physical activity is important following breast cancer. Trials of non-face-to-face interventions are needed to assist in reaching women living outside major metropolitan areas. This study seeks to evaluate the feasibility and effectiveness of a telephone-delivered, mixed aerobic and resistance exercise intervention for non-urban Australian women with breast cancer. A randomized controlled trial comparing an 8-month intervention delivered by exercise physiologists (n = 73) to usual care (n = 70). Sixty-one percent recruitment rate and 96% retention at 12 months; 79% of women in the intervention group received at least 75% of calls; odds (OR, 95% CI) of meeting intervention targets favored the intervention group for resistance training (OR 3.2; 1.2, 8.9) and aerobic (OR 2.1; 0.8, 5.5) activity. Given the limited availability of physical activity programs for non-urban women with breast cancer, results provide strong support for feasibility and modest support for the efficacy of telephone-delivered interventions.

A prospective surveillance model for rehabilitation for women with breast cancer

Background: The current model of care for breast cancer is focused on disease treatment followed by ongoing recurrence surveillance. This approach lacks attention to the patients’ physical and functional well-being. Breast cancer treatment sequelae can lead to physical impairments and functional limitations. Common impairments include pain, fatigue, upper extremity dysfunction, lymphedema, weakness, joint arthralgia, neuropathy, weight gain, cardiovascular effects, and osteoporosis. Evidence supports prospective surveillance for early identification and treatment as a means to prevent or mitigate many of these concerns. Purpose: This paper proposes a prospective surveillance model for physical rehabilitation and exercise that can be integrated with disease treatment to create a more comprehensive approach to survivorship health care. The goals of the model are to promote surveillance for common physical impairments and functional limitations associated with breast cancer treatment, to provide education to facilitate early identification of impairments, to introduce rehabilitation and exercise intervention when physical impairments are identified and to promote and support physical activity and exercise behaviors through the trajectory of disease treatment and survivorship. Methods: The model is the result of a multi-disciplinary meeting of research and clinical experts in breast cancer survivorship and representatives of relevant professional and advocacy organizations. Outcomes: The proposed model identifies time points during breast cancer care for assessment of and education about physical impairments. Ultimately, implementation of the model may influence incidence and severity of breast cancer treatment related physical impairments. As such, the model seeks to optimize function during and following treatment and positively influence a growing survivorship community.

Possible genetic predisposition to lymphedema after breast cancer

Background: Known risk factors for secondary lymphedema only partially explain who develops lymphedema following cancer, suggesting that inherited genetic susceptibility may influence risk. Moreover, identification of molecular signatures could facilitate lymphedema risk prediction prior to surgery or lead to effective drug therapies for prevention or treatment. Recent advances in the molecular biology underlying development of the lymphatic system and related congenital disorders implicate a number of potential candidate genes to explore in relation to secondary lymphedema. Methods and Results: We undertook a nested case-control study, with participants who had developed lymphedema after surgical intervention within the first 18 months of their breast cancer diagnosis serving as cases (n=22) and those without lymphedema serving as controls (n=98), identified from a prospective, population-based, cohort study in Queensland, Australia. TagSNPs that covered all known genetic variation in the genes SOX18, VEGFC, VEGFD, VEGFR2, VEGFR3, RORC, FOXC2, LYVE1, ADM and PROX1 were selected for genotyping. Multiple SNPs within three receptor genes, VEGFR2, VEGFR3 and RORC, were associated with lymphedema defined by statistical significance (p<0.05) or extreme risk estimates (OR<0.5 or >2.0). Conclusions: These provocative, albeit preliminary, findings regarding possible genetic predisposition to secondary lymphedema following breast cancer treatment warrant further attention for potential replication using larger datasets.

Why perform pro-social behaviours? Understanding the key sources of perceived value in preventative health services

In maintaining quality of life, preventative health is an important area in which the performance of pro-social behaviours provides benefits to individuals who perform them as well as society. The establishment of the Preventative Health Taskforce in Australia demonstrates the significance of preventative health and aims to provide governments and health providers with evidence-based advice on preventative health issues (Preventative Health Taskforce, 2009). As preventative health behaviours are voluntary, for consumers to sustain this behaviour there needs to be a value proposition (Dann, 2008; Kotler and Lee, 2008). Customer value has been shown to influence repeat behaviour (McDougall and Levesque, 2000), word-of-mouth (Hartline and Jones, 1999), and attitudes (Dick and Basu, 2008). However to date there is little research that investigates the source of value for preventative health services. This qualitative study explores and identifies three categories of sources that influence four dimensions of value – functional, emotional, social and altruistic (Holbrook 2006). A conceptual model containing five propositions outlining these relationships is presented. This study provides evidence-based research that reveals sources of value that influence individuals’ decisions to perform pro-social behaviours in the long-term through their use of preventative health services. This research uses BreastScreen Queensland (BSQ), a cancer screening service, as the service context.

Cardiac ARIA Index: Measuring Accessibility to Cardiovascular Services in Rural and Remote Australia via Applied Geographic Spatial Technology

Cardiovascular disease (CVD) continues to impose a heavy burden in terms of cost, disability and death in Australia. Evidence suggests that increasing remoteness, where cardiac services are scarce, is linked to an increased risk of dying from CVD. Fatal CVD events are reported to be between 20% and 50% higher in rural areas compared to major cities. The Cardiac ARIA project, with its extensive use of geographic Information Systems (GIS), ranks each of Australia’s 20,387 urban, rural and remote population centres by accessibility to essential services or resources for the management of a cardiac event. This unique, innovative and highly collaborative project delivers a powerful tool to highlight and combat the burden imposed by cardiovascular disease (CVD) in Australia. Cardiac ARIA is innovative. It is a model that could be applied internationally and to other acute and chronic conditions such as mental health, midwifery, cancer, respiratory, diabetes and burns services. Cardiac ARIA was designed to: 1. Determine by expert panel, what were the minimal services and resources required for the management of a cardiac event in any urban, rural or remote population locations in Australia using a single patient pathway to access care. 2. Derive a classification using GIS accessibility modelling for each of Australia’s 20,387 urban, rural and remote population locations. 3. Compare the Cardiac ARIA categories and population locations with census derived population characteristics. Key findings are as follows: • In the event of a cardiac emergency, the majority of Australians had very good access to cardiac services. Approximately 71% or 13.9 million people lived within one hour of a category one hospital. • 68% of older Australians lived within one hour of a category one hospital (Principal Referral Hospital with access to Cardiac Catheterisation). • Only 40% of indigenous people lived within one hour of the category one hospital. • 16% (74000) of indigenous people lived more than one hour from a hospital. • 3% (91,000) of people 65 years of age or older lived more than one hour from any hospital or clinic. • Approximately 96%, or 19 million, of people lived within one hour of the four key services to support cardiac rehabilitation and secondary prevention. • 75% of indigenous people lived within one hour of the four cardiac rehabilitation services to support cardiac rehabilitation and secondary prevention. Fourteen percent (64,000 persons) indigenous people had poor access to the four key services to support cardiac rehabilitation and secondary prevention. • 12% (56,000) of indigenous people were more than one hour from a hospital and only had access one the four key services (usually a medical service) to support cardiac rehabilitation and secondary prevention.

A systematic review : the effects of orientation programs for cancer patients and their family/carers

Objectives To assess the effects of information interventions which orient patients and their carers/family to a cancer care facility and the services available within the facility. Design Systematic review of randomised controlled trials (RCTs), cluster RCTs and quasi-RCTs. Data sources MEDLINE, CINAHL, PsycINFO, EMBASE and the Cochrane Central Register of Controlled Trials. Methods We included studies evaluating the effect of an orientation intervention, compared with a control group which received usual care, or with trials comparing one orientation intervention with another orientation intervention. Results Four RCTs of 610 participants met the criteria for inclusion. Findings from two RCTs demonstrated significant benefits of the orientation intervention in relation to reduced levels of distress (mean difference (MD): −8.96, 95% confidence interval (95%CI): −11.79 to −6.13), but non-significant benefits in relation to the levels state anxiety levels (MD −9.77) (95%CI: −24.96 to 5.41). There are insufficient data on the other outcomes of interest. Conclusions This review has demonstrated the feasibility and some potential benefits of orientation interventions. There was a low level of evidence to suggest that orientation interventions can reduce distress in patients. However, other outcomes, including patient knowledge recall/satisfaction, remain inconclusive. The majority of trials were subjected to high risk of bias and were likely to be insufficiently powered. Further well conducted and powered RCTs are required to provide evidence for determining the most appropriate intensity, nature, mode and resources for such interventions. Patient and carer-focused outcomes should be included.

The Working After Cancer Study (WACS): a population-based study of middle-aged workers diagnosed with colorectal cancer and their return to work experiences

Background The number of middle-aged working individuals being diagnosed with cancer is increasing and so too will disruptions to their employment. The aim of the Working After Cancer Study is to examine the changes to work participation in the 12 months following a diagnosis of primary colorectal cancer. The study will identify barriers to work resumption, describe limitations on workforce participation, and evaluate the influence of these factors on health-related quality of life. Methods/Design An observational population-based study has been designed involving 260 adults newly-diagnosed with colorectal cancer between January 2010 and September 2011 and who were in paid employment at the time they were diagnosed. These cancer cases will be compared to a nationally representative comparison group of 520 adults with no history of cancer from the general population. Eligible cases will have a histologically confirmed diagnosis of colorectal cancer and will be identified through the Queensland Cancer Registry. Data on the comparison group will be drawn from the Household, Income and Labour Dynamics in Australia (HILDA) Survey. Data collection for the cancer group will occur at 6 and 12 months after diagnosis, with work questions also asked about the time of diagnosis, while retrospective data on the comparison group will be come from HILDA Waves 2009 and 2010. Using validated instruments administered via telephone and postal surveys, data will be collected on socio-demographic factors, work status and circumstances, and health-related quality of life (HRQoL) for both groups while the cases will have additional data collected on cancer treatment and symptoms, work productivity and cancer-related HRQoL. Primary outcomes include change in work participation at 12 months, time to work re-entry, work limitations and change in HRQoL status. Discussion This study will address the reasons for work cessation after cancer, the mechanisms people use to remain working and existing workplace support structures and the implications for individuals, families and workplaces. It may also provide key information for governments on productivity losses.

A randomised trial of a psychosocial intervention for cancer patients integrated into routine care: The PROMPT study (promoting optimal outcomes in mood through tailored psychosocial therapies)

Background Despite evidence that up to 35% of patients with cancer experience significant distress, access to effective psychosocial care is limited by lack of systematic approaches to assessment, a paucity of psychosocial services, and patient reluctance to accept treatment either because of perceived stigma or difficulties with access to specialist psycho-oncology services due to isolation or disease burden. This paper presents an overview of a randomised study to evaluate the effectiveness of a brief tailored psychosocial Intervention delivered by health professionals in cancer care who undergo focused training and participate in clinical supervision. Methods/design Health professionals from the disciplines of nursing, occupational therapy, speech pathology, dietetics, physiotherapy or radiation therapy will participate in training to deliver the psychosocial Intervention focusing on core concepts of supportive-expressive, cognitive and dignity-conserving care. Health professional training will consist of completion of a self-directed manual and participation in a skills development session. Participating health professionals will be supported through structured clinical supervision whilst delivering the Intervention. In the stepped wedge design each of the 5 participating clinical sites will be allocated in random order from Control condition to Training then delivery of the Intervention. A total of 600 patients will be recruited across all sites. Based on level of distress or risk factors eligible patients will receive up to 4 sessions, each of up to 30 minutes in length, delivered face-to-face or by telephone. Participants will be assessed at baseline and 10-week follow-up. Patient outcome measures include anxiety and depression, quality of life, unmet psychological and supportive care needs. Health professional measures include psychological morbidity, stress and burnout. Process evaluation will be conducted to assess perceptions of participation in the study and the factors that may promote translation of learning into practice. Discussion This study will provide important information about the effectiveness of a brief tailored psychological Intervention for patients with cancer and the potential to prevent development of significant distress in patients considered at risk. It will yield data about the feasibility of this model of care in routine clinical practice and identify enablers and barriers to its systematic implementation in cancer settings.