Stewart M. Dunn

A scale for the measurement of quality of life in adults with asthma

A 20-item self-administered questionnaire with Likert scale responses was developed to measure quality of life in adult subjects with asthma. A total scale score together with subscale scores for breathlessness, mood disturbance, social disruption and concerns for health were calculated by addition of item scores. Items for the scale were selected by principal components analysis of the responses of 283 subjects to a preliminary pool of 69 items. In 58 subjects with stable asthma, good short term test-retest reliability was demonstrated with the intraclass correlation coefficient for the total scale being 0.80. The questionnaire was internally consistent in a sample of outpatients (Cronbachs alpha 0.92 in 77 subjects) and in a community sample with asthma (Cronbachs alpha 0.94 in 87 subjects). Weak correlations in the expected direction were seen with three medical markers of asthma severity. This supports the construct validity of the questionnaire and emphasizes that quality of life represents a separate dimension of asthma.

Randomized Clinical Trials in Oncology: Understanding and Attitudes Predict Willingness to Participate

PURPOSE To explore the association at different time points in the trajectory of breast cancer care, between anxiety, knowledge, and attitudes, on womens willingness to participate in randomized clinical trials. MATERIALS AND METHODS A cross-sectional survey was undertaken among women attending a breast clinic for screening mammography or diagnostic assessment plus women with newly diagnosed breast cancer to assess attitudes toward and willingness to participate in randomized clinical trials of breast cancer treatment. RESULTS Five hundred forty-five women completed questionnaires assessing knowledge of and attitudes toward randomized clinical trials. The mean age of respondents was 48.9 years (SD, 11.3 years). Thirty-three percent of women would consider participating in a clinical trial if they had breast cancer. Women with breast cancer (31%) were significantly more likely to decline to participate than women attending for screening mammography (15%) or diagnostic assessment (15%, P =.0002). Women who might consider participating in a randomized clinical trial were more knowledgeable about randomized trials (mean difference, 0.7; 95% confidence interval [CI], 0.2 to 1.2; P =.003). In a multivariate analysis, women who would consider participating in a randomized trial were younger (odds ratio [OR], 0.96; 95% CI, 0.93 to 0.99), more likely to want an active role in decision-making (OR, 3.2; 95% CI, 1.3 to 7.6), and reported a greater impact from the positive aspects of clinical trials (OR, 2.2; 95% CI, 1.3 to 3.8) and less impact from the negative aspects of clinical trials (OR, 2.2; 95% CI, 1.3 to 3.2). CONCLUSION These findings suggest that women who have a better understanding of issues about clinical trials have more favorable attitudes toward randomized trials and are more willing to consider participation in a clinical trial.

An evaluation of an asthma quality of life questionnaire as a measure of change in adults with asthma

In assessing the effectiveness of management strategies for patients with asthma, it is important to measure outcomes which are relevant to the concerns of patients. Quality of life is one such outcome which may not be adequately reflected in lung function measurements. We have developed an asthma quality of life questionnaire (the AQLQ) for this purpose. The aim of this study was to test the validity and responsiveness of the AQLQ as a measure of change. Forty four adults with asthma were assessed on two occasions 4 months apart. On each occasion subjects completed the AQLQ and the Sickness Impact Profile (SIP). Lung function and the degree of bronchial hyperresponsiveness (BHR) were measured and diary cards were used to derive a symptom score and mean daily peak flow variability. The relation of change in AQLQ scores to change in the other outcomes was assessed. Questionnaire responsiveness was assessed by comparing the change in AQLQ scores between 19 improved and 20 stable subjects. Improvement was assessed on lung function and BHR criteria. As expected, change in AQLQ score was correlated with change in symptom score (r = 0.37, 95% CI -0.04 to 0.64) and change in BHR (r = 0.38, 95% CI 0.06 to 0.64). The associations with change in peak flow variability (r = 0.12, 95% CI -0.26 to 0.47) and change in SIP score (r = 0.18, 95% CI -0.12 to 0.45) were in the expected direction but weaker than expected. The AQLQ was capable of detecting differences between improved and stable subjects (p = 0.007).(ABSTRACT TRUNCATED AT 250 WORDS)

Psychological impact of genetic testing for Huntington's disease: an update of the literature

Genetic testing has been available for Huntingtons disease for longer than any other adult onset genetic disorder. The discovery of the genetic mutation causing Huntingtons disease made possible the use of predictive testing to identify currently unaffected carriers. Concerns have been raised that predictive testing may lead to an increase in deaths by suicide among identified carriers, and these concerns set in motion research to assess the psychological impact of predictive testing for Huntingtons disease. This review article provides an overview of the literature and draws implications for clinical practice. About 10%–20% of people at risk request testing when approached by registries or testing centres. Most of the evidence suggests that non-carriers and carriers differ significantly in terms of short term, but not long term, general psychological distress. Adjustment to results was found to depend more on psychological adjustment before testing than the testing result itself. Although risk factors for psychological sequelae have been identified, few adverse events have been described and no obvious contraindications for testing people at risk have been identified. The psychological impact of testing may depend on whether testing was based on linkage analysis or mutation detection. Cohorts enrolled in mutation detection programmes have higher levels of depression before and after testing, compared with people who sought genetic testing when linkage analysis was available. There is evidence that people who choose to be tested are psychologically selected for a favourable response to testing. The impact of testing on people in settings where less intensive counselling protocols and eligibility criteria are used is unknown, and genetic testing is therefore best offered as part of comprehensive specialist counselling.

Computer-based interaction analysis of the cancer consultation.

There are few data available on which to base recommendations for effective communication in the cancer consultation. This paper describes a computerised interaction analysis system designed specifically for the cancer consultation and its application in a study investigating the relationship between doctor-patient behaviour and patient outcomes. One hundred and forty-two cancer patients attending their first consultation with a cancer specialist were audio taped and a copy of the tape was retained for interaction analysis. Before the consultation patient anxiety and information and involvement preferences were measured. Outcomes included recall of information, patient satisfaction with the consultation and psychological adjustment to cancer. Doctor behaviour was shown to vary significantly according to the age, sex, involvement preferences and in/out-patient status of the patient. The ratio of doctor to patient talk was related to satisfaction with communication, while patients whose questions were answered showed better psychological adjustment at follow-up. The results suggest that patient-centred consultations lead to improved satisfaction and psychological adjustment. These data provide precise information about consultation behaviour which can be used in the documentation of current practice and the evaluation of new interventions to improve communication.

Psychosocial Predictors of Survival in Metastatic Melanoma

PURPOSE Research interest in psychosocial predictors of the onset and course of cancer has been active since the 1950s. However, results have been contradictory and the literature is noted for methodologic weaknesses. In this prospective study, we aimed to systematically obtain data on psychosocial factors associated with human response to illness. PATIENTS AND METHODS One hundred twenty-five patients with metastatic melanoma completed questionnaires measuring cognitive appraisal of threat, coping, psychologic adjustment, perceived aim of treatment, social support, and quality of life (QOL). Questionnaires were completed, where possible, every 3 months for 2 years after diagnosis. Survival was measured from date of study entry to date of death or was censored at the date of last follow-up for surviving patients. RESULTS In a multivariate Cox regression analysis of baseline data, which controlled for demographic and disease predictors, the psychologic variables of perceived aim of treatment (P <.001), minimization (P <. 05), and anger (P <.05) were independently predictive of survival. Patients who were married (P <.01) and who reported a better QOL (P <.05) also survived longer. CONCLUSION The prognostic significance of psychologic and QOL scores remained after allowance for conventional prognostic factors. If these associations reflect an early perception by the patient or doctor of disease progression, then measures are at least valuable early indicators of such progression. If psychologic processes have a more direct influence on the course of the underlying illness, then it may be possible to manipulate them for therapeutic effect. We are now conducting a randomized controlled trial of a psychologic intervention to further elucidate these issues.

The take-home message: patients prefer consultation audiotapes to summary letters.

PURPOSE Despite reports of poor patient understanding and recall after cancer consultations, few doctors provide communication aids. We conducted a randomized trial comparing an audiotape of the consultation versus individualized summary letters to patients after their first consultation with a medical oncologist. METHODS One hundred eighty-two cancer patients were randomized to receive either (1) the audiotape followed 7 to 10 days later by the letter or (2) the letter followed by the audiotape. Outcome measures included patient recall, anxiety and depression, satisfaction with and use of the communication aids, and patient preferences for six communication options. Demographic and disease variables and information and involvement preferences were documented. RESULTS Eighty percent of patients wanted all information and 72% wanted to participate in treatment decisions. Patients listened to the tape on average 2.3 times and read the letter 2.8 times over 4 weeks, and 90% showed the tape or letter to a friend, relative, or doctor. Satisfaction with the tape and letter were uniformly high and they did not differentially affect recall, anxiety, or depression. When asked to rank six communication options, 46% of patients gave the highest rank to the tape and 21% to the letter. CONCLUSION Patients use audiotapes of their cancer consultation and individualized letters to review the information given and communicate information to relatives and friends. They prefer audiotapes to letters. Clinicians should consider installing audiotape-recording facilities that could be used to tape new-patient consultations.

The use of unproven methods of treatment by cancer patients. Frequency, expectations and cost.

The use of unproven therapies is of concern for a number of reasons, including the lack of scientific evidence to support them, their potential financial costs and the possibility of interference with conventional treatment. This study xplored the prevalence, predictors and experiences of unproven therapy use by cancer patients attending an oncology clinic at an Australian teaching hospital. A questionnaire was administered to patients whilst they were waiting for a consultation with their oncologist. A total of 173 patients were invited to participate, and 156 consented to complete the survey (90%). Over half the patients (81, 52%) had used at least one unproven therapy since their diagnosis, and 28% had used three or more. Patients most commonly practised meditation/relaxation, changed their diet and used multi- vitamins. Most expected that the therapies would aid their conventional treatments and make them feel more in control of their situation. Benefits reported were largely psychological, such as an increased sense of control or a reduction in anxiety. Younger patients, those with early stage or advanced metastatic disease and those who had used unproven therapies prior to developing cancer were more likely to use unproven therapies. Health professionals involved in the care of cancer patients should be prepared to discuss the use of unproven therapies and try to identify and deal with unmet needs to help patients to cope with their illness.

Development of the Diabetes Knowledge (DKN) Scales: Forms DKNA, DKNB, and DKNC

The Diabetes Knowledge Assessment (DKN) scales were developed to meet a specific need for rapid and reliable knowledge assessment in diabetic patients. Item format and item selection from an initial pool of 89 items were determined by pilot-testing over 300 diabetic subjects. Reliability analysis of the resulting 40 multiple-choice items, with a further sample of 56 subjects, gave a Cronbachs alpha coefficient of 0.92. Parallel forms DKNA, DKNB, and DKNC, each of 15 items selected from the parent set, had alpha coefficients above 0.82 and correlated 0.90 with each other. A full clinical trial, using DKNA, DKNB, and DKNC in randomized order of presentation, was conducted with 219 subjects attending a 2-day diabetes education program. Overall DKN scores improved from 7.6 (51%) to 11.3 (75%). Analysis of variance confirmed that DKNA, DKNB, and DKNC were equivalent forms at pretest. Mean posttest scores on DKNB were lower than the other scales (P < 0.001), but variances were equivalent for all three. A specific local change in the education program format was found to account for this discrepancy in the DKNB posttest mean. In situations where comprehensive assessment of diabetes knowledge would be time-consuming and unnecessary, these results indicate that rapid and reliable assessment is possible with a scale of only 15 validated items. The development of parallel forms of the scale extends the range of retesting possibilities for diagnosis and research.

Measurement of Emotional Adjustment in Diabetic Patients: Validity and Reliability of ATT39

The ATT39 scale was developed as a norm-referenced measure of emotional adjustment in diabetic patients. Scores on three parallel forms of the parent scale changed in response to educational intervention, and the change in scores was predictive of subsequent improvement in metabolic control. We describe further reliability and validity studies with six factorially derived subscales of the ATT39, which measured perceived levels of stress, adaptation, guilt, alienation, illness conviction, and tolerance for ambiguity. Internal consistency (Cronbach α) of the unweighted total score was 0.78, and the Guttman lower bound estimate of reliability was 0.86. The test-retest reliability of the total score varied from 0.70 to 0.87, over intervals of 2 wk, 3 mo, and 6 mo, and reliability coefficients for the six factor scores averaged 0.56. ATT39 factor scores, in 134 insulin-dependent diabetes mellitus (IDDM) and 166 noninsulin- dependent diabetes mellitus (NIDDM) patients, were correlated with scores on the Cattell 16 personality factor questionnaire and the locus of control of behavior scale (LCB). In IDDM, age was related to better adaptation, increased feelings of guilt, and a more cooperative attitude to staff and treatment. In NIDDM, age was associated with increasing resignation to a conviction of chronic illness and less tolerance for the ambiguities involved in diabetes. Intelligence was correlated with less guilt and more tolerance. Anxiety was associated with significant diabetes-related stress, regardless of treatment, and with poorer adaptation and guilt in NIDDM. An external LCB was related to increased stress and guilt. The results confirm that emotional adjustment in diabetes involves dynamic interactions among feelings that are relatively stable over periods up to 6 mo and that relate meaningfully to other aspects of personality functioning.