Danette H. Langbecker

Systematic Review of Interventions to Improve the Provision of Information for Adults with Primary Brain Tumors and Their Caregivers

Background: Adults with primary brain tumors and their caregivers have significant information needs. This review assessed the effect of interventions to improve information provision for adult primary brain tumor patients and/or their caregivers. Methods: We included randomized or non-randomized trials testing educational interventions that had outcomes of information provision, knowledge, understanding, recall, or satisfaction with the intervention, for adults diagnosed with primary brain tumors and/or their family or caregivers. PubMed, MEDLINE, EMBASE, and Cochrane Reviews databases were searched for studies published between 1980 and June 2014. Results: Two randomized controlled, 1 non-randomized controlled, and 10 single group pre–post trials enrolled more than 411 participants. Five group, four practice/process change, and four individual interventions assessed satisfaction (12 studies), knowledge (4 studies), and information provision (2 studies). Nine studies reported high rates of satisfaction. Three studies showed statistically significant improvements over time in knowledge and two showed greater information was provided to intervention than control group participants, although statistical testing was not performed. Discussion: The trials assessed intermediate outcomes such as satisfaction, and only 4/13 reported on knowledge improvements. Few trials had a randomized controlled design and risk of bias was either evident or could not be assessed in most domains.

Development and piloting of a brain tumour-specific question prompt list

The objective of this research was to develop a question prompt list aimed at increasing question asking and reducing the unmet information needs of adults with primary brain tumours, and to pilot the question prompt list to determine its suitability for the intended population. Thematic analysis of existing resources was used to create a draft which was refined via interviews with 12 brain tumour patients and six relatives, readability testing and review by health professionals. A non-randomised before–after pilot study with 20 brain tumour patients was used to assess the acceptability and usefulness of the question prompt list, compared with a ‘standard brochure’, and the feasibility of evaluation strategies. The question prompt list developed covered seven main topics (diagnosis, prognosis, symptoms and changes, treatment, support, after treatment finishes and the health professional team). Pilot study participants provided with the question prompt list agreed that it was helpful (7/7), contained questions that were useful to them (7/7) and prompted them to ask their medical oncologist questions (5/7). The question prompt list is acceptable to patients and contains questions relevant to them. Research is now needed to assess its effectiveness in increasing question asking and reducing unmet information needs.

Quality and readability of information materials for people with brain tumours and their families.

Written information is commonly used to inform patients about their disease and treatment but must be evidence-based and understandable to be useful. This study assessed the quality of the content and the readability of information brochures for people affected by brain tumours. We randomly selected 18 publicly available brochures. Brochures were assessed by criteria to assess the quality of content using the DISCERN instrument. Readability was tested using three commonly used formulas, which yield the reading grade level required to comprehend the brochure (sixth grade level recommended). The mean overall DISCERN score was 3.17 out of a maximum of 5 (moderate quality); only one achieved a rating greater than 4 (high quality). Only one brochure met the sixth grade readability criteria. Although brochures may have accurate content, few satisfied all of the recommended criteria to evaluate their content. Existing brochures need to be critically reviewed and simplified and consumer-focused brochures, produced.

Don’t need help, don’t want help and can’t get help: Why primary brain tumour patients don’t utilise supportive care services

Introduction Many haematological malignancy survivors report long-term post-treatment physiological and psychosocial effects. Objectives This study examined cancer nurses’ perception of their role, confidence levels, practices and barriers in relation to survivorship care provision for patients with haematological malignancies. Methods Approximately 1300 cancer nurses were invited to participate in a survey. The survey was distributed to all cancer nurses at a Queensland tertiary cancer centre and via email through two Australian professional cancer nursing bodies. Results In total, 423 cancer nurses (33%) completed the survey. The majority of participants agreed that all survivorship interventions included in the survey should be within their role. Nurses were least confident in discussing fertility (M=5.93, SD=2.66), employment and financial issues with patients (M=6.19, SD=2.66) and discussing information about identifying signs of cancer recurrence (M=6.43, SD=2.69), on a 11-point scale from 0 to 10 with higher scores indicating greater confidence. The least frequently performed interventions included discussing fertility, intimacy and sexuality issues, and communicating survivorship care with the patient’s primary care providers, with over 60% of participants reporting not performing these interventions often. The most significant barriers perceived by participants were lack of dedicated end-of-treatment consultation (M=2.62, SD=1.13), time (M=2.58, SD=0.94), and an appropriate physical location(M=2.21, SD=1.01), on a 5-point scale (0=not at all; 4=a great deal). Conclusions The strong support from nurses for their role in survivorship care highlights opportunities that have not yet been adequately developed. Barriers identified in this survey should be considered in the design of future survivorship care models.

What are the barriers of quality survivorship care for haematology cancer patients? Qualitative insights from cancer nurses.

PurposeMany haematological cancer survivors report long-term physiological and psychosocial effects beyond treatment completion. These survivors continue to experience impaired quality of life (QoL) as a result of their disease and aggressive treatment. As key members of the multidisciplinary team, the purpose of this study is to examine the insights of cancer nurses to inform future developments in survivorship care provision.MethodsOpen text qualitative responses from two prospective Australian cross-sectional surveys of nurses (n = 136) caring for patients with haematological cancer. Data were analysed thematically, using an inductive approach to identify themes.ResultsThis study has identified a number of issues that nurses perceive as barriers to quality survivorship care provision. Two main themes were identified: the first relating to the challenges nurses face in providing care (‘care challenges’) and the second relating to the challenges of providing survivorship care within contemporary health care systems (‘system challenges’).ConclusionsCancer nurses perceive the nature of haematological cancer and its treatment and of the health care system itself, as barriers to the provision of quality survivorship care. Care challenges such as the lack of a standard treatment path and the relapsing or remitting nature of haematological cancers may be somewhat intractable, but system challenges relating to clearly defining and delineating professional responsibilities and exchanging information with other clinicians are not.Implications for cancer survivorsAddressing the issues identified will facilitate cancer nurses’ provision of survivorship care and help address haematological survivors’ needs with regard to the physical and psychosocial consequences of their cancer and treatment.

Educational programmes for primary prevention of skin cancer

This is the protocol for a review and there is no abstract. The objectives are as follows: To assess the effects of education programmes for skin cancer prevention in the general population.

Using survey methods in telehealth research: A practical guide

Surveys are a common method for assessing patient and clinician perceptions, attitudes and outcomes of telehealth. However, inadequacies in both the conduct and reporting of survey studies are common in telehealth research. This article provides clinicians and researchers with practical guidance on the appropriate selection, use and reporting of survey tools for telehealth research. We identify common survey outcomes and instruments used in telehealth research, and methods to assess the validity and psychometric properties of survey tools. Enhancing the quality and reporting of telehealth research is important to improve our understanding of which telehealth-supported models of care improve outcomes and for which patient groups.

Development of an online psychoeducational intervention for family caregivers of high grade primary brain tumour patients

A smartphone application is a feasible way to deliver information and resources to carers while they are looking after someone receiving cancer treatment. A smartphone application is an appropriate resource for carers regardless of their age or gender.A Cognitive Behavioural Conceptualization of Psychological Distress in Parents of Children Previously Treated for Cancer5 Risk for psychological distress among cancer patients with a familial history of Indian Residential School attendance: Results from the 2008‐10 First Nations Regional Health Survey Mrs. Maike van Niekerk* | Dr. Amy Bombay Dalhousie University, Halifax, Canada; Dalhousie University, Halifax,