The Evidence-Based Development of an Intervention to Address the Information Needs of Adults Newly Diagnosed with Primary Brain
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THE EVIDENCE-BASED DEVELOPMENT OF AN INTERVENTION TO ADDRESS THE INFORMATION NEEDS OF ADULTS NEWLY DIAGNOSED WITH PRIMARY BRAIN TUMOURS AND THEIR CARERS DANETTE LANGBECKER B HLTH SCI (PUB HLTH) THIS THESIS IS SUBMITTED FOR THE DEGREE OF DOCTOR OF PHILOSOPHY IN THE SCHOOL OF PUBLIC HEALTH AND INSTITUTE FOR HEALTH AND BIOMEDICAL INNOVATION, QUEENSLAND UNIVERSITY OF TECHNOLOGY, 2011 KEYWORDS brain tumours; patient information; doctor-patient communication; cancer; carers iii ABSTRACT 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 iv 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 non- randomised 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 v 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. vi vii TABLE OF CONTENTS 1. Introduction ...................................................................................................... 1 1.1. Scope of this Research .............................................................................. 2 1.2. Research Aims ........................................................................................... 3 1.3. Significance of the Research ...................................................................... 4 1.4. Terminology .............................................................................................. 5 1.5. Thesis Structure ........................................................................................ 7 2. Primary Brain Tumours ..................................................................................... 9 2.1. Introduction .............................................................................................. 9 2.2. Incidence and Mortality ............................................................................ 9 2.3. Aetiology and Classification of Primary Brain Tumours ............................ 10 2.4. Diagnostic and Treatment Pathways ....................................................... 12 2.5. Morbidity, Impairment and Quality of Life .............................................. 14 2.6. Chapter Summary ................................................................................... 28 3. Information in the Cancer Setting ................................................................... 29 3.1. Introduction ............................................................................................ 29 3.2. Why is Information or its Provision Important? ....................................... 29 3.3. Information Needs .................................................................................. 33 3.4. Factors influencing Information Provision & Its Success .......................... 40 3.5. Improving Information Provision ............................................................. 51 3.6. Chapter Summary ................................................................................... 68 4. Systematic Review of Information Needs of Brain Tumour Patients & Carers . 69 4.1. Introduction ............................................................................................ 69 4.2. Systematic Review Methods ................................................................... 70 4.3. Systematic Review Results ...................................................................... 73 4.4. Synthesis of Information Needs and Interventions ................................ 116 5. Methodology ................................................................................................ 119 5.1. Introduction .......................................................................................... 119 5.2. Methodological Approach ..................................................................... 119 5.3. Mixed Methods Used in this Thesis ....................................................... 121 5.4. Rigour ................................................................................................... 126 5.5. Chapter Summary ................................................................................