Completing a Questionnaire at Home Prior to Needs Assessment in General Practice: A Qualitative Study of Cancer Patients' Experience.

BACKGROUND: Systematic assessments of cancer patients' rehabilitation needs are recommended, and questionnaires are considered to be useful tools when making such assessments. OBJECTIVE: The aim of this study was to explore patients' experience of completing a questionnaire about their problems and distress at home prior to a needs assessment in general practice. METHODS: Sixteen patients were recruited by their general practitioners (GPs). Semi-structured interviews were conducted in the home of the participants and at the general practice, with one interview taking place over the phone. Data were analyzed using systematic text condensation. RESULTS: Twelve women and four men aged between 49 and 83 years of age, and diagnosed with various cancers between 1 month and 4 years ago, participated in the study. The results showed how the completion of a questionnaire at home provided patients with an opportunity to reflect on different problems, and the importance of these problems to the patient's everyday life, as well as an opportunity to articulate which problems they wanted to discuss with their GPs. CONCLUSIONS: The results demonstrate that completing a questionnaire seems to stimulate patients' ability to reflect on their situation, clarify the importance of different problems to their everyday lives, and articulate these considerations to their GPs. Furthermore, we have shown that a questionnaire has the ability to interact with the patient and instigate a process of awareness. It is important to acknowledge this process of interaction between patient and questionnaire as an important part of understanding how and why questionnaires may support the patient when completing a questionnaire prior to a clinical encounter.

Knowledge in health technology assessment: who, what, how?

Health systems are placing more and more emphasis on designing and delivering services that are focused on the patient, and there is a growing interest in patient aspects of health policy research and health technology assessment (HTA). Only a few HTA agencies use and invest in scientific methods to generate knowledge and evidence about the patient aspects of a given technology. This raises questions about how knowledge is produced in HTA reports and what kind of knowledge is considered relevant. This article uses a Danish HTA on patient education from 2009 as empirical material for a critical examination and discussion of knowledge and knowledge production about the patient aspects of HTA.

Patient aspects: a review of fifty-eight Danish HTA reports.

OBJECTIVES: The objective of this study is to describe how patient aspects are assessed in Danish HTA reports, thereby contributing to the ongoing international debates concerning patient aspects in HTAs. METHODS: Fifty-eight Danish HTA reports published from 1999 to 2010 were read systematically, focusing on the inclusion of patient aspects, the methods used to generate data, and if and how clinical recommendations concerning patient aspects were drawn. RESULTS: Most of the fifty-eight HTA reports had a separate chapter about patient aspects. All reports included literature reviews for patient aspects. There was, however, much variation in the ways in which the authors presented and discussed their review methods. The most frequently used databases for the literature search were medical and HTA databases. More than half of the reports included primary research, either quantitative or qualitative methods, a few used both kinds of methods. Whereas some mentioned the importance of including patient aspects in daily clinical practice, others provided ideas on how to improve patient information or recommended changes in healthcare practices. CONCLUSIONS: Danish HTA reports do, to a large extent, include patient aspects in the assessment and in the final conclusions of the reports. If health policy and decision making is to be patient-focused, it is important that HTAs in the future integrate patient aspects in recommendations of HTA. Further improvement in assessments of patient aspects, in relation to use and description of methodologies and theoretical considerations, will assist producing the relevant evidence for these recommendations.

Exploring qualitative research synthesis: the role of patients' perspectives in health policy design and decision making.

Health systems are placing more and more emphasis on the design and delivery of services that are focused on the patient, and there is a growing interest in patient involvement in health policy research and health technology assessment (HTA). Furthermore, there is a growing research interest in eliciting patients' views, not only on 'what works' for patients but also on the need for intervention and on factors influencing the implementation of particular health technologies, their appropriateness and acceptability. This article focuses on qualitative research synthesis in eliciting patients' perspectives. Its aim is to bring research closer to policy development and decision making, to facilitate better use of research findings for health and welfare, to generate a body of evidence, and to ensure that effective and appropriate information is used in health policy decision design. A variety of synthesizing approaches in qualitative research are explored, such as meta-synthesis, meta-summary, meta-ethnography, and meta-study, focusing especially on methodology. Meta-synthesis and meta-ethnography are probably the most frequently cited approaches in qualitative research synthesis and have perhaps the most developed methodology. The implications of these various synthesizing approaches in relation to health policy and HTA are discussed, and we suggest that meta-synthesis and meta-summary are particularly useful approaches. They have an explicit focus on 'evidence synthesis', fairly clear methodologies, and they are designed to not only present interpretations of the findings but also integrate research findings. Qualitative research synthesis enables researchers to synthesize findings from multiple qualitative studies on patients' perspectives instead of establishing new, expensive, and perhaps redundant studies that might intrude on the lives of patients. Qualitative research synthesis is highly recommended by decision makers and in health policy research and HTA. In cases where patient assessment is important to overall success, it can provide those responsible for policy and decision making with a broad and varied range of knowledge about patients' perspectives before they make decisions on the application of health technologies.

[Adult cancer rehabilitation]. / Rehabilitering af voksne kræftpatienter.

The aim of cancer rehabilitation is to enable patients to reach and maintain the physical and psychosocial functional levels needed to attain an independent and meaningful life. Rehabilitation should be integrated in cancer programs. Taking a systematic approach aiming to identify patients in need is essential and should include coordination amongst professionals. Research may add knowledge to the sparse evidence of the effect of the various interventions and the need of rehabilitation when living with cancer. Patient, organisational and economic perspectives are important.

Patients' perspectives in health technology assessment: a route to robust evidence and fair deliberation.

There is increasing emphasis on providing patient-focused health care and ensuring patient involvement in the design of health services. As health technology assessment (HTA) is meant to be a multidisciplinary, wide-ranging policy analysis that informs decision making, it would be expected that patients' views should be incorporated into the assessment. However, HTA is still driven by collection of quantitative evidence to determine the clinical and cost effectiveness of a health technology. Patients' perspectives about their illness and the technology are rarely included, perhaps because they are seen as anecdotal, biased views. There are two distinct but complementary ways in which HTAs can be strengthened by: (i) gathering robust evidence about the patients' perspectives, and (ii) ensuring effective engagement of patients in the HTA process from scoping, through evidence gathering, assessment of value, development of recommendations and dissemination of findings. Robust evidence eliciting patients' perspectives can be obtained through social science research that is well conducted, critically appraised and carefully reported, either through meta-synthesis of existing studies or new primary research. Engagement with patients can occur at several levels and we propose that HTA should seek to support effective patient participation to create a fair deliberative process. This should allow two-way flow of information, so that the views of patients are obtained in a supportive way and fed into decision-making processes in a transparent manner.

Organizational and patient-related assessments in HTAs: state of the art.

OBJECTIVES: The use and implementation of health technologies do influence and are influenced by organizational structures and processes as well as patient's experiences and actions. The objective of this study is to discuss the content and managing of organizational and patient-related assessments in HTAs. METHODS: Quantitative and qualitative analysis were performed based on a review of organizational and patient-related assessments included in a random sample of fifty HTA reports. The reports were identified from INAHTA members' Web sites where homepages of HTA agencies where searched for full HTA reports, published in English or Scandinavian languages. RESULTS: HTA reports including organizational assessments mainly comprised issues related to process and structure, while issues such as control and evaluation of the technology were included less often. Cultural and environmental issues were included in a little over half of the reports. Reports including patient-related assessments mainly comprised psychological issues. Patients' perceptions of the technology's effect on their health, patient-information, and social and ethical issues were included less often. Few reports included implications for the patient's significant others. There was considerable variation in how comprehensive the issues were managed as there was in the methodological transparency of the HTA reports. CONCLUSIONS: There is room for improvement in the assessments of organizational and patient-related issues. Absence of a description of the considerations made when determining the content and methods of the assessments limits the usefulness of an HTA. The reader is left uncertain of the relevance and validity of the organizational and patient-related assessments.