The evidence-based development of an intervention to address the information needs of adults newly diagnosed with primary brain tumours and their carers

Adults diagnosed with primary brain tumours often experience physical, cognitive and neuropsychiatric impairments and decline in quality of life. Although disease and treatment-related information is commonly provided to cancer patients and carers, newly diagnosed brain tumour patients and their carers report unmet information needs. Few interventions have been designed or proven to address these information needs. Accordingly, a three-study research program, that incorporated both qualitative and quantitative research methods, was designed to: 1) identify and select an intervention to improve the provision of information, and meet the needs of patients with a brain tumour; 2) use an evidence-based approach to establish the content, language and format for the intervention; and 3) assess the acceptability of the intervention, and the feasibility of evaluation, with newly diagnosed brain tumour patients. Study 1: Structured concept mapping techniques were undertaken with 30 health professionals, who identified strategies or items for improving care, and rated each of 42 items for importance, feasibility, and the extent to which such care was provided. Participants also provided data to interpret the relationship between items, which were translated into ‘maps’ of relationships between information and other aspects of health care using multidimensional scaling and hierarchical cluster analysis. Results were discussed by participants in small groups and individual interviews to understand the ratings, and facilitators and barriers to implementation. A care coordinator was rated as the most important strategy by health professionals. Two items directly related to information provision were also seen as highly important: "information to enable the patient or carer to ask questions" and "for doctors to encourage patients to ask questions". Qualitative analyses revealed that information provision was individualised, depending on patients’ information needs and preferences, demographic variables and distress, the characteristics of health professionals who provide information, the relationship between the individual patient and health professional, and influenced by the fragmented nature of the health care system. Based on quantitative and qualitative findings, a brain tumour specific question prompt list (QPL) was chosen for development and feasibility testing. A QPL consists of a list of questions that patients and carers may want to ask their doctors. It is designed to encourage the asking of questions in the medical consultation, allowing patients to control the content, and amount of information provided by health professionals. Study 2: The initial structure and content of the brain tumour specific QPL developed was based upon thematic analyses of 1) patient materials for brain tumour patients, 2) QPLs designed for other patient populations, and 3) clinical practice guidelines for the psychosocial care of glioma patients. An iterative process of review and refinement of content was undertaken via telephone interviews with a convenience sample of 18 patients and/or carers. Successive drafts of QPLs were sent to patients and carers and changes made until no new topics or suggestions arose in four successive interviews (saturation). Once QPL content was established, readability analyses and redrafting were conducted to achieve a sixth-grade reading level. The draft QPL was also reviewed by eight health professionals, and shortened and modified based on their feedback. Professional design of the QPL was conducted and sent to patients and carers for further review. The final QPL contained questions in seven colour-coded sections: 1) diagnosis; 2) prognosis; 3) symptoms and problems; 4) treatment; 5) support; 6) after treatment finishes; and 7) the health professional team. Study 3: A feasibility study was conducted to determine the acceptability of the QPL and the appropriateness of methods, to inform a potential future randomised trial to evaluate its effectiveness. A pre-test post-test design was used with a nonrandomised control group. The control group was provided with ‘standard information’, the intervention group with ‘standard information’ plus the QPL. The primary outcome measure was acceptability of the QPL to participants. Twenty patients from four hospitals were recruited a median of 1 month (range 0-46 months) after diagnosis, and 17 completed baseline and follow-up interviews. Six participants would have preferred to receive the information booklet (standard information or QPL) at a different time, most commonly at diagnosis. Seven participants reported on the acceptability of the QPL: all said that the QPL was helpful, and that it contained questions that were useful to them; six said it made it easier to ask questions. Compared with control group participants’ ratings of ‘standard information’, QPL group participants’ views of the QPL were more positive; the QPL had been read more times, was less likely to be reported as ‘overwhelming’ to read, and was more likely to prompt participants to ask questions of their health professionals. The results from the three studies of this research program add to the body of literature on information provision for brain tumour patients. Together, these studies suggest that a QPL may be appropriate for the neuro-oncology setting and acceptable to patients. The QPL aims to assist patients to express their information needs, enabling health professionals to better provide the type and amount of information that patients need to prepare for treatment and the future. This may help health professionals meet the challenge of giving patients sufficient information, without providing ‘too much’ or ‘unnecessary’ information, or taking away hope. Future studies with rigorous designs are now needed to determine the effectiveness of the QPL.

The impact of completing a drink driving rehabilitation program on future drinking : the clients’ perspective

The paper explores the role and focus of drink driving rehabilitation programs. It is particularly concerned with whether programs that specifically focus on reducing driving after drinking also have a positive effect on clients’ levels of drinking. A sample of volunteering clients was recruited while they were participating in the Australian “Under the Limit” program and they were followed up at least three months post completion. Response rates were very low and the sample is assumed to reflect the views and outcomes of persons who felt positive about the program. Clients reported large and meaningful reductions in their drinking and in their drink driving. They also reported important moves towards action and change in their drinking habits. The findings deserve to be followed up given the fact that drink driving programs are generally of much shorter duration than alcohol focussed interventions. There is a need for further research in this area and for developing more effective recruitment strategies.

Safety, feasibility and effects of an individualised walking intervention for women undergoing chemotherapy for ovarian cancer : a pilot study

Background: Exercise interventions during adjuvant cancer therapy have been shown to increase functional capacity, relieve fatigue and distress and may assist rates of chemotherapy completion. These studies have been limited to breast, gastric and mixed cancer groups and it is not yet known if a similar intervention is even feasible among women with ovarian cancer. We aimed to assess safety, feasibility and potential effect of a walking intervention in women undergoing chemotherapy for ovarian cancer. Methods: Women newly diagnosed with ovarian cancer were recruited to participate in an individualised walking intervention throughout chemotherapy and were assessed pre-and post-intervention. Feasibility measures included session adherence, compliance with exercise physiologist prescribed walking targets and self-reported program acceptability. Changes in objective physical functioning (6 minute walk test), self-reported distress (Hospital Anxiety and Depression Scale), symptoms (Memorial Symptom Assessment Scale - Physical) and quality of life (Functional Assessment of Cancer Therapy - Ovarian) were calculated, and chemotherapy completion and adverse intervention effects recorded. Results: Seventeen women were enrolled (63% recruitment rate). Mean age was 60 years (SD = 8 years), 88% were diagnosed with FIGO stage III or IV disease, 14 women underwent adjuvant and three neo-adjuvant chemotherapy. On average, women adhered to > 80% of their intervention sessions and complied with 76% of their walking targets, with the majority walking four days a week at moderate intensity for 30 minutes per session. Meaningful improvements were found in physical functioning, physical symptoms, physical well-being and ovarian cancerspecific quality of life. Most women (76%) completed ≥85% of their planned chemotherapy dose. There were no withdrawals or serious adverse events and all women reported the program as being helpful. Conclusions: These positive preliminary results suggest that this walking intervention for women receiving chemotherapy for ovarian cancer is safe, feasible and acceptable and could be used in development of future work. Trial registration: ACTRN12609000252213

The development and implementation of the Promoting Resilient Officers (PRO) Program

This article describes the rationale, developmental process, and content of a resilience-building program that has been implemented with new recruits to a police academy. The process of extensive consultation with the police service (consistent with community-based participatory research principles) has helped to provide a sustainable and pragmatic program framework. The Promoting Resilient Officers (PRO) program is a seven-session strength-based program that integrates CBT and interpersonal perspectives within a salutogenic paradigm. PRO also includes two “refresher” sessions delivered online up to 18 months post the initial face-to-face sessions. PRO was delivered with high fidelity as an integral part of police recruit training and made sustainable by using psychologists within the police service to deliver the intervention. Implementation incorporated a Randomized Controlled design by which a rigorous evaluation of program effectiveness is being conducted. Initial data presented indicates a high level of engagement and acceptability of the PRO program.

Evaluation of the skills for preventing injury in youth program : impact on health risk behaviors, injury and school connectedness

Injury is the leading cause of death among young people, and involvement in health risk behaviors, such as alcohol use and transport-related risks, is related to increased risk for injury. Effective health promotion programs for adolescents focus on multiple levels, including relationships with peers and parents, student knowledge, behavior and attitudes, and school-level factors such as school connectedness. This study describes the pilot evaluation of a comprehensive, multi-level injury prevention program for 13-14 year old adolescents, targeting change in injury associated with transport and alcohol risks. The program, called Skills for Preventing Injury in Youth (SPIY), incorporates two primary elements: an 8-week, teacher delivered attitude and behavior change curriculum with peer protection and first aid messages; and professional development for program teachers focusing on strategies to increase students’ connectedness to school. Five Australian high schools were recruited for the pilot evaluation research, with three being assigned to receive intervention components and two assigned as curriculum-as-usual controls. In the intervention schools, 118 Year 8 students participated in surveys at baseline, with 105 completing surveys at follow up, six months following the intervention. In the control schools, 196 Year 8 students completed surveys at baseline and 207 at follow up. Survey measures included self-reported injury, risk taking behavior and school connectedness. Results showed that students in the control schools were significantly more likely to report riding bikes without helmets, riding with dangerous drivers, having driven cars on the road, and using alcohol six months after the program, while the intervention group showed no such increase in these behaviors. Additionally, students in the control schools were significantly more likely to report having had pedestrian-related injuries at follow up than they were at the baseline measurement, while intervention school students showed no change. There was also a trend observed in terms of a decrease in bicycle related injuries among intervention school students, compared with a slight increasing trend in bicycle injuries among control students. Overall, scores on the school connectedness scale decreased significantly from baseline to follow up for both intervention and control students, however measurement limitations may have impacted on results relating to students’ connectedness. Overall, the SPIY program has shown promising results in regards to prevention of students’ health risk behavior and injuries. Evidence suggests that the curriculum component was important; however there was limited evidence to suggest that teacher training in school connectedness strategies contributed to these promising results. While school connectedness may be an important factor to target in risk and injury prevention programs, programs may need to incorporate whole-of-school strategies or target a broader range of teachers than were selected for the current research.

Developing safer passengers through a school-based injury prevention program

Motor vehicle crashes are a leading cause of death among young people. Fourteen percent of adolescents aged 13-14 report passenger-related injuries within three months. Intervention programs typically focus on young drivers and overlook passengers as potential protective influences. Graduated Driver Licensing restricts passenger numbers, and this study focuses on a complementary school-based intervention to increase passengers’ personal- and peer-protective behavior. The aim of this research was to assess the impact of the curriculum-based injury prevention program, Skills for Preventing Injury in Youth (SPIY), on passenger-related risk-taking and injuries, and intentions to intervene in friends’ risky road behavior. SPIY was implemented in Grade 8 Health classes and evaluated using survey and focus group data from 843 students across 10 Australian secondary schools. Intervention students reported less passenger-related risk-taking six months following the program. Their intention to protect friends from underage driving also increased. The results of this study show that a comprehensive, school-based program targeting individual and social changes can increase adolescent passenger safety.

Experiences of a walking intervention in a University community : Qualitative perspectives

Background: This study explored the experiences of university employees that participated in a walking intervention that encouraged individuals to walk more throughout their workday. The 10-week program was comprised of 5 phases (i.e. baseline, anticipating barriers, short planned walks, longer planned walks and maintenance) and utilized a pedometer diary and an online website for logging steps. The pedometer diary included “action plans” for addressing barriers and planning walking and the online dashboard provided graphical outputs that allowed participants to visualize whether they were reaching or exceeding their step targets. Methods: A subsample of 12 academic and administrative employees from the study completed open ended questionnaires at the end of the study. The questions focused on capturing the major themes of benefits/mediators and problems/moderators of the program and were assessed using phenomenological approaches. Results: Participants found a raised consciousness of physical inactivity throughout the work day. They also found it useful to have a graphical display of physical activity patterns, but found time constraints and lack of managerial support to be the primary barriers/moderators of the program. Those most likely to withdraw from the program experienced technical difficulties with objective monitors and the online website. Conclusions: Findings highlight the value in being involved in a group forum and provide insights into the challenges of supporting such programs within the workplace.

A parent-led family-focused treatment program for overweight children aged 5 to 9 years : The PEACH RCT

OBJECTIVE: To evaluate a healthy lifestyle intervention to reduce adiposity in children aged 5 to 9 years and assess whether adding parenting skills training would enhance this effect. PARTICIPANTS AND METHODS: We conducted a single-blinded randomized controlled trial of prepubertal moderately obese (International Obesity Task Force cut points) children, aged 5 to 9 years. The 6-month program targeted parents as the agents of change for implementing family lifestyle changes. Only parents attended group sessions. We measured BMI and waist z scores and parenting constructs at baseline, 6, 12, 18, 24 months. RESULTS: Participants (n = 169; 56% girls) were randomized to a parenting skills plus healthy lifestyle group (n = 85) or a healthy lifestyle–only group (n = 84). At final 24-month assessment 52 and 54 children remained in the parenting skills plus healthy lifestyle and the healthy lifestyle–only groups respectively. There were reductions (P < .001) in BMI z score (0.26 [95% confidence interval: 0.22–0.30]) and waist z score (0.33 [95% confidence interval: 0.26–0.40]). There was a 10% reduction in z scores from baseline to 6 months that was maintained to 24 months with no additional intervention. Overall, there was no significant group effect. A similar pattern of initial improvement followed by stability was observed for parenting outcomes and no group effect. CONCLUSIONS: Using approaches that specifically target parent behavior, relative weight loss of ∼10% is achievable in moderately obese prepubertal children and can be maintained for 2 years from baseline. These results justify an investment in treatment as an effective secondary obesity-prevention strategy.