William Godolphin

Framework for teaching and learning informed shared decision making

Patients should be involved in making decisions about their health care. The ethical imperative of autonomy is reflected in legal trends that require a high standard of disclosure for informed consent, amounting to a principle of informed choice.1–3 Outcomes of care and adherence to treatment regimens improve when patients are more involved.4,5 Consumerism is part of the social spirit, and governments exhort citizens to take more responsibility.

Active patient involvement in the education of health professionals

Context  Patients as educators (teaching intimate physical examination) first appeared in the 1960s. Since then, rationales for the active involvement of patients as educators have been well articulated. There is great potential to promote the learning of patient‐centred practice, interprofessional collaboration, community involvement, shared decision making and how to support self‐care.

Putting informed and shared decision making into practice.

Objective  To investigate the practice, experiences and views of motivated and trained family physicians as they attempt to implement informed and shared decision making (ISDM) in routine practice and to identify and understand the barriers they encounter.

Survival with breast cancer: the importance of estrogen receptor quantity.

The survival of 1184 British Columbian women whose primary breast cancers were diagnosed and assayed for estrogen receptor (ER) between 1975 and 1981 was studied. Median follow-up was 60 months. ER concentrations yielded greater prognostic information than simple positive and negative categories. When ER data were divided into four strata: less than or equal to 1, 2-9, 10-159 and greater than or equal to 160 fmol/mg cytosol protein, the association of higher ER with prolonged survival was highly significant (P less than 0.0001) and independent of TNM stage, nodal status and menopausal status. ER less than or equal to 1 and ER = 2-9 groups were distinct with respect to overall disease-specific survival. Patient age did not predict survival when controlled for ER. Prolonged recurrence-free survival was associated with higher ER (P = 0.0001) for at least 5 years after diagnosis. This significant trend persisted after adjustments for nodal status, TNM stage, menopausal status and the type of systemic adjuvant therapy.

Interaction between valproic acid and aspirin in epileptic children: Serum protein binding and metabolic effects

In five of six epileptic children who were taking 18 to 49 mg/kg/day valproic acid (VPA), the steady‐state serum free fractions of VPA rose from 12% to 43% when antipyretic doses of aspirin were also taken. Mean total VPA half‐life (t½) rose from 10.4 ± 2.7 to 12.9 ± 1.8 hr and mean free VPA t½ rose from 6.7 ± to 2.1 to 8.9 ± 3.0 hr when salicylate was present in the serum. The in vitro albumin binding association constant (ka) for VPA was decreased by salicylate, but the in vivo ka value was not affected. The 12‐hr (trough) concentrations of both free and total VPA were higher in the presence of serum salicylate in five of six patients. Renal excretion of unchanged VPA decreased in five of six patients, but the VPA carboxyl conjugate metabolite–excretion patterns were not consistently affected. Salicylate appeared to displace VPA from serum albumin in vivo, but the increased VPA t½ and changes in VPA elimination patterns suggest that serum salicylate also altered VPA metabolism.

Evaluation of the quality of patient information to support informed shared decision-making

Objectives (a) To find out how much patient information material on display in family physicians’ offices refers to management choices, and hence may be useful to support informed and shared decision‐making (ISDM) by patients and (b) to evaluate the quality of print information materials exchanged during the consultation, i.e. brought in by patients or given out by family physicians.

Familial LCAT Deficiency Report of Two Patients from a Canadian Family of Italian and Swedish Descent

A 16-year-old male (S.F.) and his 21-year-old sister (D.H.) from a large family of Italian and Swedish descent had virtually identical lipoprotein pattern and complete absence of LCAT activity. Both had typical corneal opacities and mild anemia with target cells. S.F., but not D.H., presented with proteinuria, which has increased over three years of follow-up. His kidney biopsy revealed lipid deposits in the glomerular basement membrane. Ten relatives in 4 generations had normal LCAT activity and/or lipoprotein pattern. The patients and their relatives had haptoglobin type 2. Factors that might influence the different clinical presentation in our patients (previous renal disease, diet, abnormal lipoproteins), prognosis, and treatment (diet, enzyme replacement, cholestyramine) are discussed.

Patients as educators: Interprofessional learning for patient-centred care

Background: Patients with chronic conditions have unique expertise that enhances interprofessional education. Although their active involvement in education is increasing, patients have minimal roles in key educational tasks. A model that brings patients and students together for patient-centred learning, with faculty playing a supportive role, has been described in theory but not yet implemented. Aims: To identify issues involved in creating an educational intervention designed and delivered by patients and document outcomes. Method: An advisory group of community members, students and faculty guided development of the intervention (interprofessional workshops). Community educators (CEs) were recruited through community organizations with a healthcare mandate. Workshops were planned by teams of key stakeholders, delivered by CEs, and evaluated by post-workshop student questionnaires. Results: Workshops were delivered by CEs with epilepsy, arthritis, HIV/AIDS and two groups with mental health problems. Roles and responsibilities of planning team members that facilitated control by CEs were identified. Ten workshops attended by 142 students from 15 different disciplines were all highly rated. Workshop objectives defined by CEs and student learning both closely matched dimensions of patient-centredness. Conclusions: Our work demonstrates feasibility and impact of an educational intervention led by patient educators facilitated but not controlled by faculty.

Infection and immunity in Down syndrome: A trial of long-term low oral doses of zinc†

To determine whether orally administered zinc supplements could correct the abnormal humoral and cell-mediated immunity of Down syndrome, we randomly assigned 64 children with Down syndrome, aged 1 to 19 years and living at home, to receive either zinc gluconate or placebo daily for 6-month periods with crossover from one regimen to another. Control subjects were siblings and age-matched, unrelated children. Serum zinc, copper, and measures of immune system competence were tested at 3- or 6-month intervals. Parents kept daily logs of clinical symptoms such as cough and diarrhea and of physician visits. Mean serum zinc concentrations increased to about 150% of baseline during zinc supplementation, but we found no effect on serum levels of copper, immunoglobulins, or complement; on lymphocyte number or subset distribution; or on in vitro response to mitogens. Children with Down syndrome who were receiving zinc had a trend toward fewer days or episodes of cough and fever but no change in other clinical variables. Long-term, low-dose oral zinc supplementation to improve depressed immune response or to decrease infections in children with Down syndrome cannot be recommended.

Neurochemical Abnormalities in Brains of Renal Failure Patients Treated by Repeated Hemodialysis

Abstract: We examined autopsied brain from 10 patients with end‐stage renal failure who had undergone repeated hemodialysis. Eight had classic symptoms, and two had suggestive symptoms of dialysis encephalopathy. Findings were compared with those in autopsied brain from control adults who had never been hemodialyzed. Mean γ‐aminobutyric acid (GABA) contents were significantly reduced in frontal and occipital cortex, cerebellar cortex, dentate nucleus, caudate nucleus, and medial‐dorsal thalamus of the hemodialyzed patients, the reduction being >40% in cerebral cortex and thalamus. Choline acetyltransferase activity was reduced by 25–35% in three cortical regions in the hemodialyzed patients. These two abnormalities were observed in the brain of each hemodialyzed patient, regardless of whether or not the patient died with unequivocal dialysis encephalopathy. Pyridoxal phosphate contents were substantially reduced in brains of the hemodialyzed patients, but metabolites of noradrenaline, 3,4‐dihydroxyphenylethylamine (dopamine), and 5‐hydroxytryptamine (serotonin) were present in normal amounts. Aluminum levels were abnormally high in frontal cortical gray matter in the hemodialyzed patients. Although this study does not clarify the role played by aluminum toxicity in the pathogenesis of dialysis encephalopathy, the abnormalities we found suggest the need for further neurochemical investigations in this disorder.