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Background: PROACTIVE is a psycho-educational support intervention for prostate cancer patients managed on Active Surveillance. PROACTIVE is comprised of two interdependent components: group workshops and internet delivered information modules. \ud \ud Aims: We conducted a feasibility study to determine the practicality of delivering PROACTIVE at two prostate cancer centres.\ud \ud Methods: The feasibility study was a mixed methods randomized parallel-group exploratory trial. Participants were randomised using a ratio of 3:1 PROACTIVE group to treatment as usual. Qualitative semi-structured interviews and quantitative measures were completed at baseline, intervention completion (week 6), and at 6-months follow-up. Interview transcripts were analysed thematically using Framework analysis. Descriptive statistics were used to examine recruitment and retention rates, and changing trends in outcome measures. \ud \ud Results: Most aspects of the research design and PROACTIVE intervention were acceptable to those participating in the study. In particular participants valued the opportunity to share and discuss experiences with other prostate cancer patients on Active Surveillance, and receive detailed authoritative information. However, three issues were identified: \ud 1. a low response rate (13 participants recruited, response rate 16%)\ud 2. low utilisation of internet delivered information modules\ud 3. self-perceived low levels of anxiety amongst participants with the majority perceiving their cancer as not impacting on their day-to-day life or causing anxiety. \ud \ud Conclusions: Due to these significant research design issues it is not recommended PROACTIVE be evaluated in a large scale randomised controlled trial. Further research is required to explore the impact of Active Surveillance on anxiety amongst men with localized prostate cancer managed by Active Surveillance.

Introduction Cancer patients experience a range of symptoms associated with their cancer and its treatment. Research suggests that acupuncture delivered under trial conditions may be an effective intervention for some such problems. This paper reports a protocol for a research programme to assess the feasibility of implementing and evaluating acupuncture embedded in the radiotherapy service of an academic medical centre. The aims of the study are to examine the feasibility of acupuncture being delivered within the radiotherapy department by specially trained therapy radiographers when patients attend for treatment. The programme will culminate in a feasibility randomised controlled trial: Acupuncture for cancer patients undergoing Radiotherapy Treatment (ART). Methods The programme will use multiple methods: a systematic review and quality evaluation of the literature; expert consensus on model validity of the acupuncture intervention; implementation of a customised training course in acupuncture for therapy radiographers. The programme will culminate in a feasibility randomised clinical trial. ART will investigate aspects of the feasibility of a possible definitive clinical trial of acupuncture. Aspects to be investigated include processes, resources, interventions, procedures, model validity and safety of the acupuncture intervention, and quantitative and qualitative patient outcomes, in the UCLH radiotherapy department. Discussion 100 cancer patients will be recruited to the clinical trial. Quantitative outcomes include the EORTC QLQ-C30, Multidimensional Fatigue Inventory, Memorial Symptom Assessment Scale, and EQ-5D-5L. Qualitative telephone interviews will be conducted with patients and stakeholders until data saturation.

Introduction Despite widespread use, there remains a paucity of research exploring cancer patients’ experiences of receiving complementary therapy treatment. We wanted to gain insight into the experiences of patients using a complementary therapy outpatient service offering aromatherapy, massage, reflexology and Reiki. At this London Cancer Centre, therapies are offered to patients as a self-referral service as part of their treatment pathway at any stage of treatment or follow up. Methods New patients (n = 96) attending the outpatient complementary therapy service for the first time were asked about their main concerns. The MyCaW (Measure your concerns and wellbeing) evaluation tool was used to collect data. Follow up MyCaW data from these patients was also collected after 4 sessions of complementary therapy. Patients were able to choose which therapy they wished to receive at each session. Results Patient reported outcomes after receiving 4 sessions of complementary therapies demonstrated significant improvements (indicated by at least a 1 point change in MYCAW scores) across a range of concerns. The greatest improvements were seen in relaxation, sleep problems, and pains/aches. Conclusion Qualitative comments collected from this evaluation indicate that complementary therapies can address both physical and emotional concerns often simultaneously and provide a unique therapeutic space for patients. Many patients have not had this experience before and this may introduce them to new methods of addressing complex multi dimensional issues resulting from living with a cancer diagnosis.

Objective\ud We conducted a feasibility trial of acupuncture in cancer patients undergoing radiotherapy treatment. The trial included training radiographers to deliver acupuncture within patients’ routine NHS care.\ud \ud Methods\ud Mixed methods pragmatic randomized parallel-group exploratory feasibility trial comparing standard care to standard care plus acupuncture.\ud \ud Results\ud Most aspects of the research design and acupuncture intervention were acceptable to the 101 participants. Participants’ valued the opportunity to receive acupuncture within their NHS care, perceived the treatment as eliciting a number of beneficial effects, and had a positive impact on their NHS cancer treatment. However, quantitative analysis of outcome measure data revealed no consistent significant differences between those receiving standard care and those receiving standard care plus acupuncture.\ud \ud Conclusion\ud It is feasible to implement acupuncture in a busy radiotherapy unit provided by specially trained radiographers. The methodology employed appears acceptable for the evaluation of acupuncture for radiotherapy patients.

Dyspnoea, or breathlessness, is a common problem in lung cancer and is frequently difficult to alleviate. Most studies exploring strategies for dyspnoea intervention have focused on pharmacological intervention. The approach described in this article has been developed through an evaluative study of a nursing clinic for lung cancer patients with breathlessness. It used an integrative model of dyspnoea and techniques derived from chronic pulmonary disease rehabilitation. Case examples suggest that this may offer a positive intervention approach in breathlessness management by nurses.

Families contribute to maintaining the well-being of people with cancer through providing emotional and practical support, frequently at significant cost to their own well-being, and often with little help from healthcare professionals. This paper describes nurses' experience of providing an innovative service to support the families of people with lung cancer. A process of group reflection by the three nurses involved in delivering the intervention has produced an autoethnographic account of taking part in this study. Three main themes relating to the nature and process of delivering the intervention were identified: 'meeting diverse need', 'differing models of delivery' and 'dilemma and emotion'. Supporting family members of patients with lung cancer can be immensely rewarding for nurses and potentially bring significant benefit. However, this kind of work can also be demanding in terms of time and emotional cost. These findings demonstrate the value of incorporating process evaluation in feasibility studies for articulating, refining and developing complex interventions. Determining the applicability and utility of the intervention for other practice settings requires further evaluation.

The equitable provision of care is a core principle of the National Health Service. Previous research has suggested that older cancer patients may be less likely to use specialist palliative care, but such research has been limited by retrospective design and the failure to measure clinical need. The objective of this study was to examine the extent to which the use of specialist palliative care in lung cancer patients varies by age, after accounting for need. A cross-sectional survey of patients and their carers attending four hospital lung cancer clinics in London was conducted between June 2006 and April 2007. Two hundred and fifty-two patients and 137 carers participated in the study. Thirty-nine percent of participants received specialist palliative care. Metastatic disease, global quality of life and the clinic where treatment was provided were associated with use of specialist palliative care. Age, gender, deprivation, living alone, current or most recent line of treatment, number of co-morbidities and carer stress were not associated with receipt of such services. This suggests that, for patients within the specialist cancer care system, access to specialist palliative care is offered on the basis of need.

Elite groups are interesting as they frequently are powerful (in terms of position, knowledge and influence) and enjoy considerable authority. It is important, therefore, to involve them in research concerned with understanding social contexts and processes. This is particularly pertinent in healthcare, where considerable strategic development and change are features of everyday practice that may be guided or perceived as being guided, by elites. This paper evolved from a study investigating the availability and role of nurses whose remit involved leading nursing research and development within acute NHS Trusts in two health regions in Southern England. The study design included telephone interviews with Directors of Nursing Services during which time the researchers engaged in a reflective analysis of their experiences of conducting research with an `elite' group. Important issues identified were the role of gatekeepers, engagement with elites and the use of the telephone interview method in this context. The paper examines these issues and makes a case for involving executive nurses in further research. The paper also offers strategies to help researchers design and implement telephone interview studies successfully to maximise access to the views and experiences of `hard to reach groups', such as elites, while minimising the associated disruption.

For over a decade, the need to develop a robust evidence base for nursing, midwifery and health visiting through research has been part of the UK government's R&D strategy. Progress has been slow and little is known about the organisational reality of the most recent strategies. This study aimed to investigate the nature of posts with named responsibilities to lead and develop nursing and midwifery research activity, based in acute NHS hospital trusts. Data were obtained through telephone interviews with directors of nursing services, and a postal survey of relevant staff. Fifty two people responsible for nursing and midwifery R&D were invited to complete the questionnaire, of whom 34 responded. The majority of trusts were able to name an individual responsible for leading nursing R&D, although the remit of the role varied considerably. The effectiveness of implementing any national research strategy is likely to be constrained by the lack of consistency regarding nursing research roles, a factor that may also be implicated in the lack of progress in securing a meaningful contribution to NHS research from nursing R&D.

It is vital that nurses wishing to recommend or introduce new strategies are able to provide supporting evidence that is acceptable to their colleagues. The methodology from which to derive such evidence remains to be clearly defined, as the research process is complex, demanding and, to a certain extent, uncharted. This paper examines the experience of nurses collaborating in a multi-centre randomised controlled trial which evaluated a nursing intervention for the management of breathlessness in patients with lung cancer. The study raised several important methodological issues: resistance among colleagues to innovative nursing practice; the difficulty of measuring well-being in patients whose physical condition is deteriorating; maintaining uniformity of practice within a diverse group of collaborating nurse researchers; and the tension between the nursing role and the necessity of an ethically demanding research design. Analysis of the process of conducting a randomised controlled trial produced valuable insights which indicated the kind of support required to undertake research and successfully implement a new intervention into clinical practice. The study also highlighted the problems associated with asking ill people to complete standard measurement tools, particularly when such instruments might not be sensitive to the reality of the patient(s) problem, in this case, the experience of breathlessness.

Objective - To evaluate the effect of non-pharmacological intervention for breathlessness in lung cancer on breathlessness ratings and patient functioning. Design - Randomised controlled pilot study. Setting - A nurse led clinic in a specialist cancer centre. Subjects - 20 patients with advanced small cell and non-small cell lung cancer. Intervention - Weekly sessions with a nurse research practitioner over 3-6 weeks using counselling, breathing re-training, relaxation and teaching coping and adaptation strategies. Main outcome measures - Visual analogue scale ratings of breathlessness, distress caused by breathlessness, functional capacity, ability to perform activities of daily living and the Hospital Anxiety and Depression Scale. Results - Improvements in median scores on all measures were observed in the intervention group with the exception of depression, compared with the control group where median scores were static or worsened. Distress from breathlessness was improved by a median of 53%, breathlessness at worst by 35% and functional capacity by 21 %. In contrast, distress in the control group worsened by a median of 10%. Significant improvements compared with the control group were observed in breathlessness at best (p < 0.02), breathlessness at worst (p < 0.05), distress caused by breathlessness (p < 0.01), functional capacity (p < 0.02) and ability to perform activities of daily living (p < 0.03) but were not observed for anxiety or depression. Conclusion - Lung cancer patients suffering from breathlessness benefited from this rehabilitative approach to breathlessness management and strategies employed in this pilot study warrant further multicentre research. Macmillan nurses and palliative care teams are recommended to explore the potential of adopting similar approaches.

Patients with breast cancer treated with MPA often report an improvement in appetite. Similar appetite stimulation is seen in patients treated with some corticosteroids, but MPA has a potential advantage over these drugs in that it does not exert a catabolic effect. MPA (100 mg tds orally) has therefore been compared with placebo in 60 patients with advanced malignant disease. Twenty-one patients in the MPA group and 20 in the placebo group were receiving chemotherapy. Patients were treated for 6 weeks and were assessed at weeks 0, 3 and 6 for appetite, energy, mood and pain using visual analogue scales. Nutritional status was assessed by the measurement of serum proteins and anthropometrics. Karnofsky score was recorded as a measure of performance status. There was a significant improvement in appetite in the MPA group between weeks 0 (pre-study) and 3 (P = 0.0002) and 0 and 6 (P = 0.015). There was no significant improvement in appetite in the placebo group. Supporting this finding was the significant increase in serum thyroid binding pre-albumin and retinol binding protein in the MPA group between weeks 0 and 3 and 0 and 6 (P = 0.023 and P = 0.039 respectively). These two parameters showed no significant change in the placebo group. There was no change in anthropometric measurements, weight, performance status, energy, mood or pain in either group. These data indicate that there was a significant increase in appetite in anorexic patients with advanced cancer treated with MPA which was reflected in increases in rapid turnover proteins reported to reflect nutritional status. However, this apparent increase in appetite did not result in improved weight, performance status, energy levels, mood or relief of pain. Further studies to investigate the effect of higher doses of MPA are indicated.

Reduced food intake is a common problem in patients with malignant disease. Oral supplements can be easily added to foods to increase their nutrient-energy content. In a previous study (Parkinson et ah, 1987), Polycal was found to be the most acceptable energy supplement although it did not increase the energy content as much as had been hoped. Duocal, a relatively new product, was not then tested. It has a higher energy density, so might be expected to give a greater increase at the same level of palatability. This study was set up to compare the palatability and ability to increase energy of Polycal and Duocal, when incorporated into commonly used recipes. The first stage assessed the relative palatability of the two energy supplements, and found them to be equal. The second stage then set out to find the maximum acceptable amount of Duocal which could be added to a recipe. It was found that Duocal could make a larger contribution to increasing the energy content of the diet than Polycal.

This paper reports on a study exploring the usefulness of e-mail as a means of communication between nurse specialists and patients with lung cancer and their families. The study involved two lung cancer nurse specialists and 16 patients and family members who used e-mail with them during the 6-month study period. Data were collected from three sources: (1) e-mail contact between the nurse specialists and patients/family members, (2) patient/family member questionnaire and (3) a focus group/reflective session with the nurse specialists. Quantitative data collected from the e-mails and the questionnaires were analysed descriptively and are presented as summary statistics. Text data from the questionnaires and e-mails were analysed using content analysis. Findings suggest that e-mail can be an effective and convenient means of communication between nurse specialists, and patients and family members. Patients and family members reported high levels of satisfaction with this method of communication. It was found to be quick and easy, and patients and family members were satisfied with both the response and the speed of response from the nurse specialists. Nurse specialists were also positive about e-mail use and found that the benefits of using e-mail with patients/family members outweighed any disadvantages. Further investigation is recommended involving other health care professionals and different patient groups to ensure the safe and appropriate use of e-mail within health care.

Purpose Families provide crucial support, yet their own needs often go unrecognised and, as a consequence, remain unmet. The purpose of this study was to evaluate a newly developed supportive intervention for family members of patients with lung cancer. Materials and methods A consecutive convenience sample of 25 family members of people with lung cancer received an individualised supportive intervention from a support nurse over a period of 12 weeks. This involved in-depth assessment followed up with a tailored plan of ongoing support to address informational, emotional, social and practical needs. A concurrent mixed method design explored perceptions and outcomes of those receiving the intervention and assess its appropriateness, acceptability and feasibility. Data were collected through a semi structured telephone interview with family members, and support nurses maintained a contact log. A questionnaire addressed emotional well-being [general health questionnaire (GHQ-12)], quality of life [quality of life family version (Family QoL)] and needs for care [family inventory of needs (FIN)]-at baseline and week 12. Results Family members perceived they had derived benefit from the intervention. Certain elements clearly emerged as important for participants, including being listened to by someone who could facilitate emotional expression, being provided with individually tailored information and receiving practical help and advice. Outcomes mapped to five main areas: information needs, communication between family members, emotional well-being, being supported and facilitating family member's role. There was a trend for more needs to be met and quality of life and emotional well-being to improve at week 12. Conclusion This study has demonstrated that a supportive intervention for family members of patients with lung cancer can be delivered to good effect by experienced cancer nurses. The active components of the intervention have been distinguished and provide the basis for development of a larger sufficiently powered trial.

Data from an earlier paper reporting on a study comparing conventional medical follow-up with nurse specialist follow-up of patients with lung cancer demonstrated that follow-up by nurse specialists is safe, effective and can lead to greater levels of patient satisfaction. The process and experience of developing a nurse specialist role in lung cancer follow-up care has not yet been described. The aims of this paper are to describe the preparation and development of a model of nurse led follow-up care, identify key nursing interventions provided within nurse led follow-up care and provide insights into the experiences of nurse specialists providing follow-up care. Data were collected from nurse specialists' patient case-records and from meetings held with the study team. Semi-structured interviews were conducted with the nurse specialists providing follow-up care and the study coordinators. The nature of the nursing role in lung cancer follow-up care is described. In addition, four themes relating to the process of developing a nurse led follow-up role are identified. These are: 'training', 'becoming credible', 'emotional burden' and 'making a difference'. Managing follow-up care for patients with lung cancer can be rewarding for nurse specialists. However, it can also be emotionally demanding. Training and support for such roles is vital and requires further in-depth research.

A growing body of literature highlights the physical, emotional, financial and social impact of caring on family members and other carers of people affected by cancer (Laizner et al., 1993; Davis-Ali et al., 1993; Kristjanson and Ashcroft, 1994; Grande et al., 1997; Payne et al., 1999; Harding and Higginson, 2003). However, recent national guidance in the United Kingdom suggests that cancer services are failing to recognise and meet the needs of this group (National Institute for Clinical Excellence (NICE), 2004). This guidance recommends that health care professionals take greater account of the needs of families and carers and develop ways to support them at all stages in the patient pathway, including bereavement. In the context of lung cancer, evidence exists suggesting that families and carers suffer from lack of information, minimal contact with health professionals and ineffective support structures (Plant

This paper considers methodological and philosophical issues that arose during a multi-centre, randomized controlled trial of a new nursing intervention to manage breathlessness with patients with primary lung cancer. Despite including a diverse range of instruments to measure the effects of the intervention, the uniqueness of individuals' experiences of breathlessness were often hidden by a requirement to frame the study within a reductionist research approach. Evidence from the study suggests that breathlessness is only partly defined when understood and explored within a bio-medical framework, and that effective therapy can only be achieved once the nature and impact of breathlessness have been understood from the perspective of the individual experiencing it. We conclude that to work therapeutically we need to know how patients interpret their illness and its resultant problems and that this demands methodological creativity.

OBJECTIVE--To compare responses of patients with cancer with those of a matched control group, cancer specialists, general practitioners, and cancer nurses in assessing personal cost-benefit of chemotherapy. DESIGN--Prospective study of consecutively recruited patients with cancer and other groups by questionnaire; half of the patients received the questionnaire again three months after starting treatment. SETTING--A medical oncology ward of a London teaching hospital. SUBJECTS--106 Patients with newly diagnosed solid tumours referred to the unit for consideration of treatment with cytotoxic chemotherapy, 100 of whom were able to complete the questionnaire. 100 Matched controls, 315 cancer doctors (238 radiotherapists and 77 medical oncologists), 1500 randomly chosen general practitioners, and 1000 randomly chosen cancer nurses. MAIN OUTCOME MEASURES--Percentage chance of cure, prolonging life, or palliation of symptoms required to make treatment worth while with two hypothetical chemotherapy treatments, with severe and mild side effects respectively. RESULTS--Respondents to the questionnaire comprised 100 patients, 100 controls, 60 (78%) medical oncologists, 88 (37%) radiotherapists, 790 (53%) general practitioners, and 303 (30%) cancer nurses. Most patients were willing to accept intensive chemotherapy for a very small chance of benefit. The median benefit required to make the hypothetical intensive treatments worth while for patients compared with controls were: for chance of a cure (range 1 to 100%) 1% v 50%, for prolonging life (range three months to five years) 12 months v 24-60 months, and for relief of symptoms (range 1 to 100%) 10% v 75% respectively. There were no significant differences in the responses of the 50 patients completing the questionnaire on a second occasion. Doctors and nurses were less likely to accept radical treatment for minimal benefit compared with the patients (median scores 10-50%, 12-24 months, and 50-75%, for chance of cure, prolonging life, and relief of symptoms respectively). Significantly more patients than controls accepted treatments giving the minimal benefit for each category (cure 53.1 v 19.0%, 67.0 v 35.0%; prolonging life 42.1 v 10.0%, 53.0 v 25.0%; relief of symptoms 42.6 v 10.0%, 58.7 v 19.0% for intensive and mild treatments respectively, p less than 0.001) as was the case for comparison of patients with other groups. CONCLUSION--Patients with cancer are much more likely to opt for radical treatment with minimal chance of benefit than people who do not have cancer, including medical and nursing professionals. This could be taken into account when discussing treatment options with patients and their relatives.

This paper explores issues surrounding the role and capacity of research to inform practice. Through a consideration of three research projects undertaken by cancer nurses, some questions concerning nurse-led research and practice development initiatives are raised. Philosophical tenets of collaborative inquiry and action research form the basis of the exploration, articulating the essence of the way in which the research endeavours described, were undertaken. It is an attempt at describing research that moves away from traditional approaches that have so often depersonalised those involved.

The extent to which a doctor or health professional can make a valid assessment of a patient's quality of life, anxiety and depression was investigated in a series of cancer patients. Doctors and patients filled out the same forms, viz. the Karnofsky, Spitzer, Linear Analogue Self Assessment Scales and a series of simple scales designed for this study, at the same time. Correlations between the two sets of scores were poor, suggesting that the doctors could not accurately determine what the patients felt. A further study examining the reproducibility of these scales demonstrated considerable variability in results between different doctors. It is concluded that if a reliable and consistent method of measuring quality of life in cancer patients is required, it must come from the patients themselves and not from their doctors and nurses.

Multicentre randomised controlled trial of nursing intervention for breathlessness in patients with lung cancer {#article-title-2} Objective: To evaluate the effectiveness of nursing intervention for breathlessness in patients with lung cancer. Design: Patients diagnosed with lung cancer participated in a multicentre randomised controlled trial where they either attended a nursing clinic offering intervention for their breathlessness or received best supportive care. The intervention consisted of a range of strategies combining breathing control, activity pacing, relaxation techniques, and psychosocial support. Best supportive care involved receiving standard management and treatment available for breathlessness, and breathing assessments. Participants completed a range of self assessment questionnaires at baseline, 4 weeks, and 8 weeks. Setting: Nursing clinics within 6 hospital settings in the United Kingdom. Participants: 119 patients diagnosed with small cell or non-small cell lung cancer or with mesothelioma who had completed first line treatment for their disease and reported breathlessness. Outcome measures: Visual analogue scales measuring distress due to breathlessness, breathlessness at best and worst, WHO performance status scale, hospital anxiety and depression scale, and Rotterdam symptom checklist. Results: The intervention group improved significantly at 8 weeks in 5 of the 11 items assessed: breathlessness at best, WHO performance status, levels of depression, and two Rotterdam symptom checklist measures (physical symptom distress and breathlessness) and showed slight improvement in 3 of the remaining 6 items. Conclusion: Most patients who completed the study had a poor prognosis, and breathlessness was typically a symptom of their deteriorating condition. Patients who attended nursing clinics and received the breathlessness intervention experienced improvements in breathlessness, performance status, and physical and emotional states relative to control patients.