Elizabeth Nelson

A randomised controlled trial to assess the effectiveness and cost of a patient orientated self management approach to chronic inflammatory bowel disease

Objectives: We developed a patient centred approach to chronic disease self management by providing information designed to promote patient choice. We then conducted a randomised controlled trial of the approach in inflammatory bowel disease (IBD) to assess whether it could alter clinical outcome and affect health service use. Design: A multicentre cluster randomised controlled trial. Setting: The trial was conducted in the outpatient departments of 19 hospitals with randomisation by treatment centre, 10 control sites, and nine intervention sites. For patients at intervention sites, an individual self management plan was negotiated and written information provided. Participants: A total of 700 patients with established inflammatory bowel disease were recruited. Main outcome measures: Main outcome measures recorded at one year were: quality of life, health service resource use, and patient satisfaction. Secondary outcomes included measures of enablement—confidence to cope with the condition. Results: One year following the intervention, self managing patients had made fewer hospital visits (difference −1.04 (95% confidence interval (CI) −1.43 to −0.65); p<0.001) without increase in the number of primary care visits, and quality of life was maintained without evidence of anxiety about the programme. The two groups were similar with respect to satisfaction with consultations. Immediately after the initial consultation, those who had undergone self management training reported greater confidence in being able to cope with their condition (difference 0.90 (95% CI 0.12–1.68); p<0.03). Conclusions: Adoption of this approach for the management of chronic disease such as IBD in the NHS and other managed health care organisations would considerably reduce health provision costs and benefit disease control.

Uncovering the Limits of Patient-Centeredness: Implementing a Self-Management Trial for Chronic Illness:

Research evaluating self-management of chronic conditions points to the effectiveness of interventions’ changing the health behavior of individuals. However, we know little about how self-management is negotiated within health services. The authors designed a qualitative investigation to illuminate the quantitative findings of a randomized controlled trial (RCT) of a self-management program for people with inflammatory bowel disease. They conducted in-depth interviews with physicians and patients, and qualitative analysis illuminated the nature of doctor-patient encounters and possible reasons for lack of change in patient satisfaction with the consultation. The findings suggest that factors inhibiting effective patient-centered consultations include failure of physicians to incorporate expressed need relevant to people’s self-management activities fully, interpretation of selfmanagement as compliance with medical instructions, and the organization of outpatients’ clinics. Giving attention to these barriers might maximize the opportunities for patient selfmanagement of chronic illness based on a therapeutic alliance with health care professionals.

Children's Adjustment During the First Year of a Parent's Cancer Diagnosis

Abstract This study investigated the psychosocial adjustment of 80 school-age children (aged 8 to 16 years) during the first year of a parents cancer diagnosis. Based on a cognitive model of stress and coping, the aims were to consider within-group variability in childrens responses and to identify the strongest factors associated with good or poor adjustment. Mixed methods of data collection (standardized measures and semistructured interviews) were used to facilitate a more sensitive and reliable assessment of the childrens experiences. The study was innovative in triangulating the sources of outcome measures and thus obtained self-reported data as well as assessments from parents and teachers. After multivariate analysis, the two main risk factors shown to be independently associated with poor adjustment in children were low self-esteem (p = .002) and poor adjustment in the parent with cancer (p = .01).

Patients' experiences of an open access follow up arrangement in managing inflammatory bowel disease.

Background: Improving access is a key policy issue in improving quality of care and extending patient choice and participation. People’s experience of changing from fixed outpatient appointments to more flexible direct access arrangements for chronic disease has been underexplored. Objectives: To examine patients’ views on using an open system of access compared with fixed outpatient appointments as part of a guided self-management intervention for inflammatory bowel disease (IBD). Design: Embedded qualitative study undertaken alongside a randomised controlled trial. Semi-structured interviews were undertaken to obtain an in depth understanding of patients’ experience of the change in access arrangements. Participants: A purposive sample (n = 30) was drawn from the intervention group (n = 700) according to a range of responses to the trial baseline and follow up quantitative measures. Results: 28 interviews were included in the analysis. Compared with the previous system of fixed appointments, preference for the new open access system was based on enhanced personal control in contacting services and the view that it fitted better with everyday routine management and the requirement for urgent medical contact when symptoms fail to respond to medication. Preference for retaining fixed appointments was based on a sense of security from gaining access which did not require the individual to initiate the request for medical help. Conclusions: Open access may fit better with patients’ self-management of their condition and everyday routines, roles and responsibilities. Ensuring that outpatient organisational arrangements and personnel are responsive to patient initiated requests for appointments is likely to impact on the acceptability of this type of access arrangement. Some people may continue to prefer the fixed appointment system which should be retained if patient choice is to be respected.

Pastoral Care for Children of Cancer Patients

This paper reports the findings of new research on the school as a source of psychosocial support for primary‐ and secondary‐stage children of cancer patients. It begins with a restatement of the importance of pastoral care in schools and of teachers listening to children. Academic success is an important factor in maintaining positive self‐esteem and psychological functioning. The authors show how parents’ cancer affected their children at schoool; how children do not disclose important personal and familial information; and that this can mean that problems in school are not fully understood nor supported. Peers had an important role to play in adjustment.