Meinir Krishnasamy

The views of bowel cancer survivors and health care professionals regarding survivorship care plans and post treatment follow up

Goals of workIncreasing numbers of people survive cancer beyond diagnosis and treatment. Many survivors have ongoing needs and they may encounter fragmented, poorly coordinated follow up care. Survivorship care plans (SCP) have been promoted as a key aspect of survivorship care. This study aimed to survey key stakeholders in the care of people with colorectal cancer (survivors, primary care providers and hospital-based healthcare professionals) regarding follow-up and SCP.Patients and methodsIn study 1, cancer survivors completed a questionnaire regarding their follow-up and experiences during survivorship. Participants’ primary care physicians completed a phone interview regarding proposed SCP elements. A subgroup of survivors reviewed a sample SCP and participated in a phone interview regarding this. In study 2, healthcare professionals working with colorectal cancer patients completed a questionnaire regarding follow-up and proposed elements of a SCP.Main resultsTwenty survivors completed the questionnaire, 14 primary care providers completed a phone interview and 12 survivors reviewed the sample SCP.Ninety-five healthcare professionals (30 medical professionals and 65 nurses) completed the questionnaire. There was strong support for core elements of the SCP. Additionally, nurses and survivors expressed support for supportive care and psychosocial elements. There was lack of consensus regarding who should prepare and discuss the SCP.ConclusionsThere is strong support for the development and use of SCPs for bowel cancer survivors. There is some variation in opinion regarding ideal content of the SCP, who might prepare it, and how it might be discussed and utilised.Implications for Cancer SurvivorsOvercoming identified barriers to implementing SCPs for bowel cancer survivors is necessary for high quality cancer care.

Development and pilot testing of a nurse-led posttreatment support package for bowel cancer survivors.

Background: Colorectal cancer (CRC) is the most common cancer affecting both men and women in Australia. The illness and related treatments can cause distressing adverse effects, impact on emotional and psychological well-being, and adversely affect social, occupational, and relationship functioning. Current models of follow-up fail to address the complex needs arising after treatment completion. Strategies to better prepare and support survivors are urgently required. Objectives: This study aimed to develop and pilot test an innovative supportive care program for people with potentially curative CRC. Methods: The SurvivorCare intervention was developed by a multidisciplinary team using 3 key principles: (1) promote patient involvement and engagement; (2) address the specific needs of individual patients, and (3) use evidence-based strategies to promote well-being and reduce treatment sequelae. It also addressed 4 essential components of survivorship planning, defined by the US Institute of Medicine. Ten survivors completed questionnaires and satisfaction interviews before and after receiving the intervention. Results: SurvivorCare comprises survivorship educational materials (booklet, DVD, and question prompt list), a tailored survivorship care plan, a tailored nurse-led end-of-treatment consultation, and 3 follow-up telephone calls. Pilot data demonstrated that survivors considered the intervention appropriate, relevant, and useful. Conclusions: SurvivorCare is a well-received, comprehensive intervention that will now be evaluated in a randomized controlled trial aiming to reduce distress and unmet needs and improve quality of life in CRC survivors. Implications for Practice: If SurvivorCare is shown to be effective, it will be possible to quickly and broadly disseminate this model of care.

Low physical activity levels and functional decline in individuals with lung cancer

OBJECTIVES Physical activity has been infrequently measured objectively in non-small cell lung cancer (NSCLC). We aimed to investigate levels of physical activity, functional and patient reported outcomes at diagnosis and over six months in participants with recently diagnosed NSCLC and compare results with both physical activity guidelines and outcomes of similar-aged healthy individuals. METHODS This prospective observational study assessed 50 individuals from three Australian tertiary hospitals with stage I-IIIB NSCLC at diagnosis, then 10 weeks and six months later. Thirty five healthy individuals without cancer were assessed once. Outcome measures included tri-axial accelerometery (number of steps per day), six minute walk distance (6MWD), muscle strength and questionnaires including health-related quality of life (HRQoL). RESULTS Individuals with NSCLC were engaged in significantly less physical activity than similar-aged healthy individuals, with 60% not meeting physical activity guidelines. At diagnosis they had worse quadriceps strength, nutritional status and HRQoL. Over six months, participants with NSCLC experienced decline in self-reported physical activity, 6MWD and muscle strength, and worsening symptoms. CONCLUSION At diagnosis individuals with NSCLC engage in less physical activity, are weaker and more depressed than healthy individuals and their self-reported physical activity declines over six months. Future studies are required to investigate the efficacy of interventions to increase physical activity.

Patients and carer experiences of care provision after a diagnosis of lung cancer in Scotland

IntroductionThis qualitative study was set out to explore experiences of care provision of 60 patients diagnosed with lung cancer and a carer of their choiceMaterials and methodsParticipants were invited to take part in three in-depth interviews over a 6-month period. After considerable sample attrition due to worsening disease or death over the study period, 23 complete patient data sets were available for analysis. Fifteen complete carer data sets were analysed.ResultsFour key domains of need were identified: (1) the pathway to confirmation of diagnosis, (2) communication of diagnosis, treatment options and prognosis, (3) provision of co-ordinated, family-oriented care and (4) support away from acute services. Discernable shifts in patients’ needs were apparent over time within and across the four domains, illustrating a complex relationship between the categories of need experienced by patients and carers.DiscussionAround the time of diagnosis, the priorities of patients and carers centred around their needs for information about the process of treatment and the options open to them. As time went on, they appeared to experience feelings of greater isolation and physical dependency and were particularly aware of deficiencies in the coordination of supportive care. Many patients appeared to rely on the relationship they had developed with their hospital consultant and, therefore, found it difficult to make the transition into palliative care or at least a more primary-care-led service once treatment was over.ConclusionData from the study point to the importance of heightening general practitioner awareness of potential signs and symptoms of lung cancer. Findings indicate the need to evaluate the benefits to patients and carers of rapid access to diagnostic tests and results and support the establishment of effective and streamlined supportive care pathways for patients with lung cancer.

Unmet needs and distress in people with inoperable lung cancer at the commencement of treatment

PurposePeople with lung cancer report a higher burden of unmet needs, specifically psychological and daily living unmet needs. They experience more psychological distress and more physical hardship than other tumour sites. This study examined the levels of unmet need and psychological distress in inoperable lung cancer patients at the start of treatment.MethodsA cross-section survey methodology was employed using baseline data from a randomised controlled trial designed to evaluate a supportive care intervention. Eligible lung cancer patients were approached to participate at the start of treatment. Consenting patients completed questionnaires prior to or just after the commencement of treatment. Reliable and valid measures included Needs Assessment for Advanced Lung Cancer Patients, Hospital Anxiety and Depression Scale and Brief Distress Thermometer.ResultsOf the 108 patients participating, the top unmet need was ‘Dealing with concerns about your family’s fears and worries’ (62%); with the next four also coming from the psychological/emotional domain, but, on average, most needs related to medical communication. Thirty two percent of patients reported clinical or subclinical anxiety and 19% reported HADS scores suggestive of clinical or subclinical depression. Moreover, 39.8% of the sample reported distress above the cut-off on the distress thermometer and this was associated with higher needs for each need subscale (p < 0.05).ConclusionsPeople with lung cancer have high levels of unmet needs especially regarding psychological/emotional or medical communication. People with lung cancer who are classified as distressed have more unmet needs.

Role recognition and changes to self-identity in family caregivers of people with advanced cancer: a qualitative study.

PurposeFamily caregivers of people with advanced cancer can provide extensive support to the patient. However, the role is not well defined and their experiences are poorly understood. This study aimed to explore how caregivers view their role and the impact of their caregiving.MethodsA symbolic interactionist framework guided the in-depth individual interviews and grounded theory methodology was used to analyse the data. A total of 17 interviews were conducted: 13 with active caregivers and 4 with bereaved caregivers.ResultsThree dominant codes are presented. Caregivers lacked role recognition, as they struggled to recognise their role existed, even though they took on extensive and challenging tasks. Caregivers reported substantial loss or changes to their self-identity: with some caregivers reporting not being able to stop thinking about caregiving and others having difficulty answering questions about themselves. Caregivers also demonstrated difficulty in taking a break: active caregivers did not consider taking a break, whereas bereaved caregivers retrospectively admitted needing a break but reported an inability to take one.ConclusionsCaregiving is complex and extensive. People who care for those with advanced cancer are in need of intervention to provide support and assistance to them in their role. However, this needs to be structured with consideration for how caregivers view their role.

Exploring the nature and impact of fatigue in advanced cancer

This paper offers an insight into the nature and impact of fatigue through the triadic perceptions of patients with advanced cancer, family members or friends, and health care professionals involved with their care. Their views were accessed through a case study undertaken at a cancer centre and funded by Macmillan Cancer Relief. The aim was to identify aspects of the experience that may be amenable to future nursing intervention.

Satisfaction with nurse-led telephone follow up for low to intermediate risk prostate cancer patients treated with radical radiotherapy. A comparative study.

PURPOSE OF THE RESEARCH As the number of men living with prostate cancer is increasing worldwide, the requirement for follow up care also grows. This study was undertaken to evaluate nurse-led, telephone follow up, for men with low to intermediate risk prostate cancer treated with radical radiotherapy when compared with medical follow up. METHODS AND SAMPLE A non-randomized, two-cohort, comparative study. 169 men diagnosed with prostate cancer were recruited from outpatient clinics at a tertiary cancer centre in Australia. 83 men were recruited to cohort 1 (control) (51 low to intermediate risk; 32 high risk) and 86 to cohort 2 (intervention) (51 low to intermediate risk; 35 high risk). High risk patients, regardless of cohort, received medical follow up. Low to intermediate risk patients in cohort 2 were triaged to nurse-led review for their six month review appointment. Nurse-led follow up consisted of six monthly telephone consultations and PSA testing. MEASURES Participants completed the Satisfaction with Consultation Scale, the Brief Distress Thermometer and the Expanded Prostate Cancer Index Composite. KEY RESULTS There was no statistically significant difference in patient satisfaction on any of the study measures between the nurse-led and standard medical follow up at six months following treatment completion. However, where there was a trend towards significance (p=0.051), it favoured the nurse-led follow up regimen. CONCLUSIONS Nurse-led telephone consultation provides an acceptable model of follow-up for men diagnosed with low to intermediate risk prostate cancer. Multi-centre randomised controlled trials are needed to support the efficacy of nurse-led, telephone follow up services.

Working with resistance, tension and objectivity: Conducting a randomised controlled trial of a nursing intervention for breathlessness

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.

A nurse- and peer-led support program to assist women in gynaecological oncology receiving curative radiotherapy, the PeNTAGOn study (Peer and nurse support trial to assist women in gynaecological oncology): study protocol for a randomised controlled trial

BackgroundWomen who undergo radiotherapy for gynaecological cancer (GC) can experience distressing side effects which impact on psychosocial functioning and intimate relationships. Cancer-related distress may be ameliorated by comprehensive preparation for treatment and addressing women’s informational, physical, psychological and psychosexual needs. This paper describes the protocol for a multisite randomised controlled trial (RCT) testing a novel intervention package which combines tailored specialist nursing consultations and telephone peer support with the primary aim to reduce psychological distress. Secondary aims assess patient quality of life, symptom distress, unmet supportive care needs, preparation for treatment, psychosexual functioning and vaginal stenosis.Methods/designThis multifaceted intervention comprises four nurse-led consultations coupled with four phone calls from a peer support volunteer (GC survivor). The evidence-based intervention will be delivered at critical points in the illness trajectory: pre-treatment, mid-treatment, treatment completion and post-treatment. Nurses and peers undergo 2-day intensive training workshops, are guided by comprehensive study intervention manuals and receive ongoing supervision and support. Eligible patients will have a diagnosis of GC, be scheduled to receive curative radiotherapy, be aged 18 years or over and speak English. Three-hundred and six participants will be randomized to receive usual care or usual care with the intervention package. Study outcome measures will be collected at baseline, day 1 of radiotherapy and 1, 6 and 12 months post radiotherapy. Clinical assessments of vaginal toxicity will occur at baseline, and 3, 6, and 12 months post radiotherapy.DiscussionThis timely research has the potential to substantially reduce the physical, psychosexual and supportive care needs of women with GC. Using a telephone peer support model, the intervention package ensures equitable access to support services for geographically isolated patients. The novel intervention engages peer volunteers who liaise with nurses to encourage adherence to professionally-delivered information and provide emotional support. It has been designed to be potentially transferable to a range of treatment settings and diseases. Based on pilot data, the proposed intervention was found to be useful and acceptable to patients and clinicians. If effective and feasible in the multisite RCT, the program could be widely disseminated.Trial registrationAustralian New Zealand Clinical Trial Registry ACTRN12611000744954