Donna Milne

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.

The role of the Internet in supporting and informing carers of people with cancer: a literature review

BackgroundThe Internet is an expanding source of information and support for cancer patients and their families. Studies mostly report patient Internet use. Little is known about how carers (families/informal caregivers/friends) use the Internet and what they find useful.AimThe aim of this paper was to review the literature on the role of the Internet in supporting and informing carers of people with cancer.Materials and methodsFindings are based on a review of published studies identified from 1996–2009 Ovid MEDLINE, CINAHL, EMBASE and 2002–2009 PsycINFO, Cochrane database and Google Scholar. Key search words used were cancer, patient, information, Internet, online, web, support, family, carer, caregiver and friend.ResultsOne hundred forty-five abstracts were reviewed. Fifty-two articles were retrieved in full text. Twenty of the 52 articles were critically appraised using the appropriate Critical Appraisal Skills Programme tool. All studies retrieved were level IV evidence. Most compared carer and patient Internet use with other cancer information sources or analysed content of postings to web sites. Some reported on patient ‘indirect’ Internet use through carers. Heterogeneity of results related to different study aims, diversity in study tools, varying sample sizes and differing cancer populations. Broadly, Internet use can be divided into information searching and support group activity. Carers access Internet information to problem solve; however, they report doctors as their most preferred information source. They would like to have e-mail communication with Health Care Professionals to ask questions and clarify information. Participation in online support groups provides information tailored to individual needs and peer support.Implications for practiceThe Internet may be a primary or secondary source of information and can be used to access services. Routine assessment of carers’ Internet use, prescribing of Internet sites and e-mail communication with carers are possible areas for practice improvement. The current level of evidence is not ideal to influence policy development.ConclusionsResearch is required to evaluate carer Internet use in the rapidly changing world of health and technology. Interactive Internet applications developed specifically for carer use have the potential to prepare, inform and support the carer in their ever-expanding health care role. The impact of these services on carer quality of life also requires investigation.

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.

Meeting the support and information needs of women with advanced breast cancer: a randomised controlled trial

Addressing psychosocial and quality of life needs is central to provision of excellent care for people with advanced cancer. This study tested a brief nurse-delivered intervention to address the needs of urban women with advanced breast cancer. This study was conducted at four large urban hospitals in Australia. One hundred and five women with advanced breast cancer were recruited and randomised to receive the intervention or usual care, then asked to complete the European Organisation of Research and Treatment of Quality of life Q-C30 version (2.0) (EORTC Q-C30) (version 2) and Supportive Care Needs Survey (SCNS) at 1 month and 3 months postrecruitment. No significant differences were detected between intervention and usual care groups in the SCNS or the EORTC Q-C30 subscale scores. However, when the groups were divided into high needs (score of above 50) and low baseline needs (score of 50 or below) for each SCNS subscale, a significant difference between intervention and usual care groups was found in the psychological/emotional subscale among women with high baseline needs. In conclusions, this study demonstrated that a face-to-face session and follow-up phone call with a breast care nurse significantly reduced the psychological and emotional needs of those with high initial needs. There was no evidence of the intervention influencing the quality of life; or perceived needs of women with low initial psychological/emotional needs or perceived needs in other domains. Possibly, the intervention was not sufficiently intense to achieve an effect.

The exercise programming preferences and activity levels of cancer patients undergoing radiotherapy treatment

IntroductionResearch has shown that patients who undergo regular physical activity during cancer treatment have significantly better physical functioning, cardiorespiratory fitness, psychological well-being and quality of life than those who do not. Despite the apparent value of exercise, few patients undertake regular physical activity during treatment and usually find it difficult to return to pre-treatment levels of activity following treatment completion. The purpose of this study was to compare pre-treatment versus on-treatment activity levels of outpatients receiving radiotherapy at a cancer centre in Australia and to identify patients’ preferences and barriers to exercise during this time.MethodsOne hundred and twenty consecutive patients undergoing radical radiotherapy were approached. Ninety-two patients (77%) answered questions on medical and demographic variables, past and current activity levels and exercise counselling and programming preferences.ResultsPatients reported a decrease in the time spent exercising once radiotherapy treatment started and were less likely to engage in strenuous activities. Seventy-nine percent of patients reported that cancer and its treatments had affected their ability to exercise. Seventy-one percent wanted information about exercise during treatment and preferred to receive this information from an exercise specialist who is affiliated with the hospital. A home-based independent exercise program was preferred by 53% of patients but there was less consistency around when to begin an exercise program.ConclusionsThe study indicates that a significant proportion of cancer patients undergoing radiotherapy want information, counselling and support regarding exercise and exercise programming.

Trialling a patient-led cancer care website in an acute cancer care setting

Health ICT is rapidly gaining popularity among policy makers and health consumers. Specific platforms for use in cancer care are missing. Aim: The aim of this pilot study was to: 1) test the feasibility, functionality and usability of a patient-led cancer care web platform: CanCare, in a sample of people undergoing cancer treatment and 2) ascertain if CanCare could enhance communication between patients, family, friends and health professionals. Methods: Cancer patients receiving chemotherapy were invited to participate. Data were collected via semi-structured interviews, online surveys and a website usage program. Results: Nine patients with four different types of cancer completed the study. All saw the potential of the website but many found it too complex to use, particularly when unwell post treatment. Many were frustrated by the lack of integration with existing hospital systems and the need to enter relevant data manually. The cancer-specific information tab rated highly and was used extensively. The website used alone did not promote interactions between family and/or health professionals. Conclusion: A patient-led cancer care website has the potential to help patients manage their cancer care but needs to be intuitive to use, integrated into hospital systems and requires significant family/carer and health professional engagement.

Development and validation of a measurement tool to assess perceptions of palliative care

Understanding patients perceptions about palliative care is necessary to make an effective referral. The aim was to develop and validate a measure of patient perceptions.

Appropriate, Timely Referral to Palliative Care Services: A Name Change Will Not Help

professionals involved in cancer care harbor significant misunderstandings about what palliative care services can provide and when they should become involved. We believe similar misconceptions are held by many patients and their family members. Therefore, any attempt to facilitate appropriate and timely referral to specialist palliative care services should address misconceptions and concerns held by patients, family members, and health professionals. We conducted a qualitative study 1a designed to explore patients’

Exploring Knowledge, Attitudes, and Practice Associated With Meditation Among Patients With Melanoma

Aim: To explore the knowledge, attitudes, and practices associated with meditation among people with melanoma and investigate the relationship between perceived stress, trait mindfulness, and meditation. Factors associated with interest to participate in an online meditation program were also explored. Methods: A survey-based cross-sectional study of 291 patients attending a melanoma outpatient clinic assessed knowledge of meditation, attitudes toward meditation using Determinants of Meditation Practice Inventory (DMPI), and meditation experience. Perceived stress and trait mindfulness were measured using the Perceived Stressed Scale and Cognitive and Affective Mindfulness Scale, respectively. Results: Participants who had tried meditation (43%) were likely to be younger, female, and have completed higher education or be employed. Perceived stress score was higher among women, younger participants, and those treated in the past year but did not differ by melanoma stage. Participants reported a good understanding of the potential benefits of meditation, but even among people with meditation experience, common misconceptions prevailed. The main barrier to meditation was a perceived lack of knowledge about meditation . Higher DMPI scores were associated with lower education, moderate to low access to service centers, or living in disadvantaged neighborhoods . Participants practicing meditation that involved self-reflection reported less stress and higher trait mindfulness compared with participants practicing another type of meditation. People interested in participating in an online meditation-based program reported higher perceived stress than those not interested. Conclusion: A meditation-based intervention teaching self-reflective practices, targeted at people with melanoma, may have the potential to assist them with managing their stress.

Clinical and palliative care outcomes for patients of poor performance status treated with antiprogrammed death-1 monoclonal antibodies for advanced melanoma

Antiprogrammed death‐1 antibodies (anti‐PD1) have response rates of 40% in metastatic melanoma. Patients with poor performance status (PS) were excluded from clinical trials, yet use of anti‐PD1 is widespread in clinical practice. Literature regarding clinical and palliative care outcomes in patients with poor PS treated with anti‐PD1 is lacking.