Karen A. Luker

Treatment decision making in women newly diagnosed with breast cancer.

The purpose of this study was to explore the hypothesis that women with breast cancer had specific preferences about the degree of control they wanted over treatment decision making. One hundred fifty women, newly diagnosed with breast cancer, were interviewed and their preferences for participation in treatment decision making were established using a measurement tool designed to elicit decision-making preferences (Degner LF, Sloan JF. Decision making during serious illness: What role do patients really want to play? J Clin Epidemiol 1992;45:944-50). Two hundred women with benign breast disease served as a descriptive comparison group. Unfolding theory (Coombs CH. A theory of data. New York: John Wiley & Sons, 1964) provided a means of analyzing the data so that the degree of control preferred by each woman could be established. The majority of the newly diagnosed women preferred to play a passive role in treatment decision making, leaving the decision-making responsibility to their physician, whereas the benign control group preferred a collaborative role in which joint decisions could be made between the patient and the physician. The implications of the results for patient participation are discussed.

Decision‐making role preferences and information needs: a comparison of colorectal and breast cancer

Objective An exploratory study has been carried out to examine decision‐making role preferences and information needs for a sample of people with colorectal cancer (n=48). The work replicated a larger study carried out for women with breast cancer (n=150), and this paper compares and contrasts findings for both disease groups.

Cancer survivors' views of work 3 years post diagnosis: a UK perspective.

The impact of cancer on peoples working lives is an increasingly important concern but knowledge on this issue is very limited in the UK. Forty-one people of working age were purposively selected from the North Western Cancer Intelligence Service and interviewed by telephone to describe their experiences to returning to work following diagnosis and treatment. The data was subject to qualitative thematic analysis using NVIVO software. The results indicated the importance of returning to work from diagnosis and through treatment which was then followed by a re-assessment of work-life balance when people recovered from primary treatment and were back in employment. The principle motivations for returning to work were a quest for normality and financial pressures. One barrier to returning to work was the lack of medical advice from cancer specialists and general practitioners regarding the appropriate time to get back to work. A good relationship with their employer/manager was a major influence on returning to work and appeared to be related to duration of service rather than occupational status. These findings demonstrate the importance of paid work to people diagnosed with cancer and highlight the need to improve the support from medical professionals, especially oncology nurses.

Comparing hospital and telephone follow-up after treatment for breast cancer: randomised equivalence trial

Objective To compare traditional hospital follow-up with telephone follow-up by specialist nurses after treatment for breast cancer. Design A two centre randomised equivalence trial in which women remained in the study for a mean of 24 months. Setting Outpatient clinics in two NHS hospital trusts in the north west of England Participants 374 women treated for breast cancer who were at low to moderate risk of recurrence. Interventions Participants were randomised to traditional hospital follow-up (consultation, clinical examination, and mammography as per hospital policy) or telephone follow-up by specialist nurses (consultation with structured intervention and mammography according to hospital policy). Main outcome measures Psychological morbidity (state-trait anxiety inventory, general health questionnaire (GHQ-12)), participants’ needs for information, participants’ satisfaction, clinical investigations ordered, and time to detection of recurrent disease. Results The 95% confidence interval for difference in mean state-trait scores adjusted for treatment received (−3.33 to 2.07) was within the predefined equivalence region (−3.5 to 3.5). The women in the telephone group were no more anxious as a result of foregoing clinic examinations and face-to-face consultations and reported higher levels of satisfaction than those attending hospital clinics (intention to treat P<0.001). The numbers of clinical investigations ordered did not differ between groups. Recurrences were few (4.5%), with no differences between groups for time to detection (median 60.5 (range 37-131) days in hospital group v 39.0 (10-152) days in telephone group; P=0.228). Conclusions Telephone follow-up was well received by participants, with no physical or psychological disadvantage. It is suitable for women at low to moderate risk of recurrence and those with long travelling distances or mobility problems and decreases the burden on busy hospital clinics. Trial registration National Cancer Research Institute 1477.

Involvement in treatment decisions: what do adults with asthma want and what do they get? Results of a cross sectional survey

Background: Current healthcare policy advocates patient participation in treatment decision making. However, in asthma there is little evidence regarding patients’ views on such involvement. This study explored the preferred and perceived level of involvement in treatment decisions, rationales for role preference, perceived facilitators of/barriers to involvement, and the interrelationship of role preference and demographic variables in a sample of patients with asthma. Methods: A cross sectional survey was performed of 230 adults with clinician diagnosed asthma from 10 primary care sites and one specialist respiratory centre in north-west England. Preferred role in treatment decisions was assessed using the Control Preferences Scale. Results: Fifty five (23.9%) preferred an active role, 82 (35.7%) a collaborative role, and 93 (40.4%) a passive role; 19 (8.2%) perceived their role as active compared with 45 (19.6%) collaborative and 166 (72.2%) passive. Only 33.5% (n = 77) of respondents attained their most preferred role; 55.2% (n = 127) were less involved than they preferred. Patient related, professional related, and organisational factors, especially quality and duration of consultations, facilitated or hampered involvement. Role preferences were not strongly associated with demographic variables or asthma severity. Conclusions: This study in patients with asthma highlights the fact that there is a need for professional and patient education regarding partnership working, skilful communication, and innovative approaches to service delivery.

Caring for dying people in hospital

Background.  Fifty-four per cent of people who die in England and Wales do so in hospital. Evidence suggests that care delivered to dying people in hospital does not match up to the ideal of a good death. These studies have provided organizational and structural explanations of nurses’ behaviour that support argument for change at the macro level, in order to improve the quality of care delivered to dying people. There has been little study of the perceptions of nurses working in acute medical settings in relation to their experience of caring for dying people. Therefore, there is little evidence on which to base supportive strategies at the level of individual nurses. Aim.  In this study we set out to develop an understanding of care for dying people in hospital, from the perspective of newly qualified staff nurses in the UK. The purpose was to build a theory of how nurses might be helped to deliver quality care to dying people in hospital. Methods.  This paper is based on an exploratory study underpinned by phenomenological philosophy. In-depth interviews were conducted with 28 newly qualified nurses, focusing on their experiences of caring for dying people on medical wards in two acute hospitals in England in 1999. The interview transcripts were interpreted using a phenomenological approach. Findings.  The findings presented in this paper relate to commonalities found to underlie study participants’ perceptions of their experiences. All the nurses’ stories were found to be built around six essences – the personal ideal, the actual, the unknown, the alone, tension and anti-tension. These essences, and the relationships between them, were used to build a model of the experience of caring for dying people in hospital. Limitations.  This descriptive study of the experience of individual nurses does not examine the wider social context. It attempts to complement existing sociological theory of death and dying. Conclusion.  The study revealed how a group of newly qualified nurses experienced caring for dying people. We theorize that the model developed has utility as a tool for gaining understanding of the experience of caring for dying people. It is assumed that nurses, through using this model to find explanations for their emotions and behaviours, may gain emotional support that might have a positive impact on the quality of care delivered to dying people in hospital.

Exploring the decision-making preferences of people with colorectal cancer

Objectives  To explore patient views on participation in treatment, physical care and psychological care decisions and factors that facilitate and hinder patients from making decisions.

Readability Of Patient Information Booklets For Women With Breast Cancer

Providing accurate information, in both verbal and written formats, is seen as an important component of patient care. For individuals diagnosed with cancer, acquiring information may be a particularly pertinent issue in terms of coping with the disease. Numerous information booklets are available for people with cancer which aim to provide information on various aspects of care and treatment. This British study examined the readability of 50 information booklets available to women with breast cancer using the SMOG and Flesch reading tests. Generally the information booklets were found to have a high reading age, arguably not suitable for the majority of the United Kingdom (UK) population. This study has implications for health care professionals who provide written information as a supplement or substitute for verbal information.

Pain, physical functioning and quality of life of individuals awaiting total joint replacement: a longitudinal study

OBJECTIVES To investigate if pain, physical function and the quality of life changed among adults with osteoarthritis while on the waiting list for hip or knee joint replacement. METHODS A longitudinal study of patients listed for primary hip or knee joint replacement. Participants were interviewed at baseline (n = 105) and followed up at 3 (n = 84), 6 (n = 47) and 9 months (n = 24), or until their joint replacement. Measurement tools used were a visual analogue scale (VAS), Western Ontario and McMasters Universities (WOMAC) Osteoarthritis Index and the Medical Outcomes Study Short Form Health Survey (SF-36). RESULTS Baseline data indicated high levels of pain as measured by VAS [mean 7.0 (SD 2.2)] and WOMAC pain [mean 11.2 (SD 3.5)]. At baseline, the mean physical function measured by WOMAC was 40.3 (SD 12.1). At the 3-month follow-up, there was significant deterioration in VAS pain scores (0.6; 95% CI mean difference 0.3, 1.0); WOMAC pain scores (1.2; 95% CI mean difference 0.7, 1.8) and WOMAC physical function scores (4.8; 95% CI mean difference 2.8, 6.7) compared with baseline. CONCLUSION The often long wait for joint replacement surgery and deterioration in pain and physical function has highlighted the need for active management by health professionals while patients are on the waiting list.

Return to Work After Cancer in the UK: Attitudes and Experiences of Line Managers

Introduction With improvements in diagnosis, treatment and survival rates, returning to work after cancer is of increasing importance to individuals and employers. Although line managers can play a potentially important role in the return to work process, research thus far has focused on the return to work process from the perspective of cancer survivors. Aim To explore the attitudes of line managers towards employees with a cancer diagnosis. Methods A short self-administered, on-line questionnaire was circulated to managers in the North East of England. Factorial structures of the line managers’ attitudes survey was examined using exploratory factor analysis and the effect of demographic characteristics and organisational variable on the attitudes of line managers was examined using multivariate analysis of variance (MANOVA). Results Line managers’ attitudes can be conceptualized according to five empirical factors: (a) fearful attitudes towards cancer survivors, (b) supportive attitudes, (c) line-managers’ perceived burden, (d) maintaining normality, and (e) financial benefits issues. Overall, line-managers hold relatively positive attitudes toward cancer survivors and are willing to support them in their effort to return to work. However, managers tend to harbour negative attitudes regarding the individual cancer survivors’ ability both to engage in work related activities and in meeting the demands of employment. MANOVA results also indicated that female managers hold more positive attitudes than male managers toward cancer diagnosis, less concerned about workload burdens of working with cancer survivors, and more willing to help cancer survivors maintain normality. Conclusions The results of this study suggest that employers/line-managers need to be provided with training, support, and resources to help them facilitate employment and job retention of employees diagnosed with cancer.