Priority setting and patient adaptation to disability and illness: outcomes of a qualitative study.

The study examined the question of who should make decisions for a National Health Scheme about the allocation of health resources when the health states of beneficiaries could change because of adaptation. Eight semi-structured small group discussions were conducted. Following focus group theory, interviews commenced with general questions followed by transition questions and ended with a 'focus' or 'key' question. Participants were presented with several scenarios in which patients adapted to their health states. They were then asked their views about the appropriate role of the public, patients and health professionals in making social judgements of quality of life. After discussion and debate, all groups were asked the key question: 'In light of adaptation, who should evaluate quality of life for the purpose of setting priorities in the allocation of health care?' In all groups participants presented strong arguments for and against decision making by patients, the public and health professionals. However, most groups thought a representative body which included a range of perspectives should make the relevant judgements. This is at odds with the recommendations in most national pharmaceutical guidelines. The main conclusion of the paper is that health economists and other researchers should explore the possibility of adopting a deliberative, consensus-based approach to evaluating health-related quality of life when such judgements are to be used to inform priority setting in a public system.

The monetary value of a life year: evidence from a qualitative study of treatment costs.

A small number of studies have provided suggestive evidence that the general public rejects the idea of giving higher priority to low-cost patients, in the context of a limited budget, in order to maximise health benefits. The study reported here used semi-structured group discussions to investigate the normative bases of such views among the Australian public. Discussion groups help participants reflect critically upon their own reasoning processes and go some way towards revealing underlying values rather than unreflective preferences. As a part of the exercise, participants were asked to allocate a hospital budget. After discussion and deliberation only three out of 41 chose to allocate all of the money to the low-cost patients. Reasons were not based on conceptual confusion or lack of insight into the implications of the different strategies, but rather on views about fairness, including the importance of giving all groups a 'chance' of being treated and of not removing 'hope' from high-cost patients. The results suggest that as costs rise people are willing to pay more than the minimum cost of a quality-adjusted life year for equity reasons, indicating that caution must be exercised in estimating a single monetary value for a QALY.

Diverse voices, simple desires: a conceptual design for primary care to respond to depression and related disorders.

BACKGROUND: The World Health Organization and the World Organization of Family Doctors have called for 'doable' and 'limited' tasks to integrate mental health into primary care. Little information is provided about tasks GPs can undertake outside of guidelines that suggest to prescribe medication and refer to specialists. OBJECTIVES: The reorder study aimed to gather diverse patient and community perspectives to inform the development of an effective system of depression care. METHOD: Five hundred and seventy-six patients completed computer-assisted telephone interviews. Two hundred and seventy-six community stakeholders completed a modified two round Delphi. Responses were analysed to identify tasks and these were synthesised into a conceptual design. RESULTS: Fifteen core tasks were identified, 5 were agreed upon and a further 10 identified by each group but not agreed upon. Listen, understand and empathize, provide thorough and competent diagnosis and management, follow-up and monitor patients, be accessible and do not rush appointments and provide holistic approach and tailor care to individual needs were agreed on. Other tasks included: develop plans with patients, assess for severity and suicide risk, account for social factors, be well trained in depression care and offer a range of treatment options, appropriate and timely referral, support and reassurance, educate patients about depression, prescribe appropriately and manage medication and be positive and encouraging. CONCLUSIONS: The tasks form the basis of a conceptual design for developing a primary care response to depression. They fit within three domains of care: the relational, competency and systems domains. This illustrates tasks for GPs beyond prescription and referral.

Treatment costs and priority setting in health care: A qualitative study.

BACKGROUND: The aim of this study is to investigate whether the public believes high cost patients should be a lower priority for public health care than low cost patients, other things being equal, in order to maximise health gains from the health budget. Semi-structured group discussions were used to help participants reflect critically upon their own views and gain exposure to alternative views, and in this way elicit underlying values rather than unreflective preferences. Participants were given two main tasks: first, to select from among three general principles for setting health care priorities the one that comes closest to their own views; second, to allocate a limited hospital budget between two groups of imaginary patients. Forty-one people, varying in age, occupation, income and education level, participated in a total of six group discussions with each group comprising between six and eight people. RESULTS: After discussion and deliberation, 30 participants rejected the most cost-effective principle for setting priorities, citing reasons such as 'moral values' and 'a personal belief that we shouldn't discriminate'. Only three participants chose to allocate the entire hospital budget to the low cost patients. Reasons for allocating some money to inefficient (high cost) patients included 'fairness' and the desire to give all patients a 'chance'. CONCLUSION: Participants rejected a single-minded focus on efficiency - maximising health gains - when setting priorities in health care. There was a concern to avoid strategies that deny patients all hope of treatment, and a willingness to sacrifice health gains for a 'fair' public health system.

Who should be involved in health care decision making? A qualitative study.

Most countries appear to believe that their health system is in a state of semi-crisis with expenditures rising rapidly, with the benefits of many services unknown and with pressure from the public to ensure access to a comprehensive range of services. But whose values should inform decision-making in the health area, and should the influence of different groups vary with the level of decision-making? These questions were put to 54 members of the public and health professionals in eight focus groups. Adopting a different perspective from other studies, participants were not asked if particular groups should be involved in decisions but rather through deliberation and discussion nominated their own potential decision makers. This delivered a clear message that participants saw a legitimate role for a broad range of stakeholders in priority-setting decisions so as to incorporate a diversity of expertise and opinion. Companion themes were the acknowledgment that decisions involve ethical judgments and are not purely technical, that the power of special interest groups (such as clinicians) should be kept in check, and that the process by which decisions are reached is important. The results suggest that qualitative methods of investigation have the potential to improve the legitimacy of policy decisions by contributing to a better understanding of the values of the public and health professionals, and by expanding the range of options available for further research.

Characterisation of unilateral neglect by physiotherapists.

PURPOSE: It is not known how clinicians characterise unilateral neglect (ULN) or whether they consider the different types of ULN during their evaluation and management of patients with this condition. The purpose of this study was to gain insight into physiotherapists' understanding of ULN and to identify the terminology used by clinicians to characterise neglect behaviour. METHOD: Qualitative research design employing focus groups and one-to-one interviews. Thirty-three experienced neurological and novice physiotherapists from one Australian state were asked to discuss how they characterise ULN and to explain what they meant by the terms they used. Data analysis involved preparation of verbatim transcripts followed by coding, data reduction, and identification of major themes. Data management was facilitated using NVivo computer software. FINDINGS: Terms such as sensory neglect, visual neglect, extinction, inattention, and functional neglect were used to characterise neglect behaviour but there was considerable confusion between many of these terms. Motor neglect was an unfamiliar concept to many participants. Functional implications of ULN were considered important. Characterisations of neglect according to the spatial distribution of the behaviour were uncommon. CONCLUSIONS: Despite awareness of many types of neglect, the physiotherapists in this study did not have a clear understanding of how to accurately characterise the different types of ULN. Education to address the issue is required.

Recognition of depression and psychosis by young Australians and their beliefs about treatment.

OBJECTIVES: To assess young people's ability to recognise clinically defined depression and psychosis, the types of help they thought appropriate for these problems, their knowledge of appropriate treatments, and their perceptions regarding prognosis. DESIGN: A cross-sectional telephone survey using structured interviews. Vignettes of a person with either depression or psychosis were presented, followed by questions related to recognition of the disorder, best forms of treatment and the prognosis. PARTICIPANTS: A randomly selected sample of 1207 young people aged 12-25 years. SETTING: Melbourne, Victoria, and surrounding regional and rural areas. OUTCOME MEASURES: Responses to a mental health literacy questionnaire. RESULTS: Almost half the respondents were able to identify depression correctly, whereas only a quarter identified psychosis correctly. Counsellors and family or friends were the most commonly cited forms of best help, with family or friends preferred by the younger age group for depression. General practitioners were considered more helpful for depression, and psychiatrists and psychologists more helpful for psychosis. Most respondents considered counselling and psychotherapy to be helpful. However, more than half the respondents expressed negative or equivocal views regarding the helpfulness of recommended pharmacological treatments. CONCLUSIONS: The limitations we identified in youth mental health literacy may contribute to the low rates of treatment and the long duration of untreated illness reported in other studies. There is a need for initiatives to enhance mental health literacy among young people, and those close to them, if benefits of early treatment are to be realised.

Needs assessment study of genetics education for general practitioners in Australia.

PURPOSE: Because of the explosion of genetic information resulting from the Human Genome Project and other developments in genetics and genetic technologies, primary care practitioners in Australia will be expected to have a much greater role in the practice of genetic medicine; however, little is published regarding their knowledge and attitudes to genetics, technologies, or genetics education. This study aimed to determine the genetics knowledge and educational needs of general practitioners (GPs) in Victoria, Australia, and their experiences in dealing with genetics in their practices. METHODS: Qualitative research methods were used primarily to obtain data from focus groups, interviews, and a limited survey. RESULTS: GPs believed their knowledge of genetics was poor and they felt inadequately prepared to manage patients with genetic conditions. They identified testing and counseling as areas that particularly needed strengthening. CONCLUSION: These data, together with GPs' suggestions about educational strategies, are essential for developing appropriate genetics education programs and resources that are relevant for Australian health care.