Measuring patient preference and surgeon choice

One of the major barriers to randomized trials in the field of surgery is the presence of strong preferences for one of the treatment options. Patients and surgeons who favor strongly a particular treatment approach are usually reluctant to participate in trials where operative intervention is determined on the basis of randomization. This then affects both the feasibility of the trial in terms of achieving the required sample size as well as the generalizability of the study's findings. Therefore, measurement of patient and surgeon preference is a crucial component of the feasibility assessment for surgery trials. In this article, we introduce the Prospective Measure of Preference, which is a novel method to measure preferences that has been designed to accommodate the complexity of surgical decision-making. We also present a simple method to measure individual and community equipoise among expert clinicians to assess the feasibility of future randomized trials in surgery.     

Transcranial magnetic stimulation in patients with bipolar depression: a double blind, controlled study

Dolberg OT, Dannon PN, Schreiber S, Grunhaus L. Transcranial magnetic stimulation in patients with bipolar depression: a double blind, controlled study. Bipolar Disord 2002: 4(Suppl. 1): 94–95. © Blackwell Munksgaard, 2002     

Operationalising a model framework for consumer and community participation in health and medical research

The Consumers' Health Forum of Australia and the National Health and Medical Research Council has recently developed a Model Framework for Consumer and Community Participation in Health and Medical Research in order to better align health and medical research with community need, and improve the impact of research. Model frameworks may have little impact on what goes on in practice unless relevant organisations actively make use of them. Philanthropic and government bodies have reported involving consumers in more meaningful or collaborative ways of late. This paper describes how a large charity organisation, which funds a significant proportion of Australian cancer research, operationalised the model framework using a unique approach demonstrating that it is both possible and reasonable for research to be considerate of public values.     

A one-item question with a Likert or Visual Analog Scale adequately measured current anxiety

OBJECTIVE: To determine whether a single question with a Likert Scale or a Visual Analog Scale (VAS) response adequately measures current anxiety. STUDY DESIGN AND SETTING: Consecutive English-speaking adult women attending a dedicated breast clinic in a major Australian city were invited to complete a demographic questionnaire, the State Trait Anxiety Inventory (STAI), and a single question with a five-point Likert Scale response and a VAS in random order. Only women who completed the STAI were included in analyses. RESULTS: Four hundred of 497 (80%) eligible women agreed to participate. Both measures were adequate predictors of the STAI score; correlation with STAI was 0.78 (95% confidence interval [CI] 0.73-0.82) for the VAS and 0.75 (95% CI 0.70-0.79) for the Likert Scale. However, 11% of women incorrectly completed the VAS limiting its usefulness. CONCLUSION: A single question with either a Likert Scale or VAS response may be an adequate replacement for the STAI. Both measures quickly and easily assess anxiety and may be useful for research purposes when researchers have very limited time or questionnaire space or need to reduce the burden on participants of completing many measures.     

Meeting patients' information needs beyond the year 2000

Advances in information technology, and changing patient expectation in regard to provision of information and participation in clinical decisions are already influencing the cancer consultation. In future, the oncologist's role will evolve further, and the cancer consultation beyond the year 2000 will be an opportunity for information relating to the particular patient's circumstances to be presented according to the patient's wishes. Patients' desired input into clinical decisions will be respected, and consultation audiotapes will be a widely used aid for patients after the consultation.Presented as an invited lecture at the 8th International Symposium: Supportive Care in Cancer, Toronto, Canada, 19–22 June 1996     

Attitudes and experiences of family involvement in cancer consultations: a qualitative exploration of patient and family member perspectives

Purpose

Family members (FMs) often provide support to patients, regularly attend cancer consultations and are often involved in medical decision-making. Limited research has been conducted to date to understand patients’ and FMs’ perceptions about family involvement in cancer consultations. Therefore, this study aimed to qualitatively explore the attitudes and experiences of Australian cancer patients and FMs regarding (1) family attendance at consultations, (2) family roles in consultations and (3) the challenges of family involvement.

Methods

Thirty patients and 33 FMs, recruited through either a tertiary metropolitan oncology clinic or national cancer patient advocacy group, participated in semi-structured interviews. Interviews were transcribed and qualitatively analysed using Framework analysis methods.

Results

Four relevant themes were identified: (1) negotiating family involvement, (2) attitudes towards the roles FMs assume, (3) challenges of family involvement and (4) family-clinician interactions. Overall, patients appreciated family involvement and valued FMs’ provision of emotional and informational support, and FMs also found benefit from participating in consultations. Some patients appreciated their FM assuming the role of ‘messenger’ between the consultation and extended family. However, a number of challenges were also reported by patients (e.g. maintaining privacy, mismatched patient-family information needs) and FMs (e.g. emotional toll of supportive roles, negative behaviours of clinicians towards FMs).

Conclusions

FMs appear to make valuable contributions to cancer consultations, and their presence can benefit both the patient and the FM themselves in many ways. However, for some FMs, attending consultations can be challenging. Study findings point to the need for psychosocial support addressing FMs’ needs and the development of communication strategies for oncology clinicians to positively engage with FMs. Further research is needed in these areas.

     

G gamma and A gamma globin-chain biosynthesis by adult and umbilical cord blood erythropoietic bursts and reticulocytes

We examined gamma-globin-chain biosynthesis by adult and umbilical cord blood or erythropoietic bursts in methylcellulose clonal culture and gamma-chain synthesis by cord blood reticulocytes. Globin chains were labeled with 14C-amino acids and guantitated by using autoradiography or fluorography. Alpha, beta, and G gamma and A gamma chains were separated by isoelectric focusing in polyacrylamide gels containing 8 M urea and 3% Nonidet P-40 (a nonionic detergent). Time course examinations of the gamma-chains synthesized by the bursts revealed no changes in the G gamma:A gamma ratio between days 10 and 18 of culture. The ratio of G gamma/(G gamma + A gamma) in cultures of adult circulating erythroid precursors was 0.38 +/- 0.09, which corresponds to the known ratio in adult peripheral blood erythrocytes. The relative G gamma-chain biosyntheses in the cord blood bursts and reticulocytes were 0.56 +/- 0.02 and 0.66 +/- .008, respectively. Both are intermediate between the accepted newborn and adult ratios. Natal erythropoietic precursors appear to be in the transitional stage with respect to the switching of G gamma-A gamma ratios.     

Muckle–Wells syndrome in an Indian family associated with NLRP3 mutation

Muckle — Wells syndrome (MWS) is a rare autosomal dominant disease that belongs to a group of hereditary periodic fever syndromes. It is part of the wider spectrum of the cryopyrin-associated periodic syndrome (CAPS) which has only rarely been described in non-Caucasian individuals. It is characterized by recurrent self-limiting episodes of fever, urticaria, arthralgia, myalgia and conjunctivitis from childhood. Progressive sensorineural hearing loss and amyloidosis are two late complications. MWS is caused by gain of function mutations in the NLRP3 gene, which encodes cryopyrin, a protein involved in regulating the production of proinflammatory cytokines. We report two patients with MWS in an Indian family associated with the p.D303N mutation in the NLRP3 gene. These findings promote awareness of these hereditary periodic fever syndromes as a cause for recurrent fevers from childhood in the Indian population.KEY WORDS: Hereditary periodic fever, D303N mutation, Indian family, Muckle—Wells syndrome, p.D303N mutation