Women with gynaecological cancer awaiting radiotherapy: Self-reported wellbeing, general psychological distress, symptom distress, sexual function, and supportive care needs.

OBJECTIVE: To better serve women with gynaecological cancers, we need a sound understanding of their health, wellbeing and needs. This study sought to explore these issues in a sample of Australian women before commencing curative radiotherapy. METHODS: We undertook a secondary analysis of baseline data from a supportive care trial (n = 311). Descriptive statistics were used to summarise responses to measures of wellbeing, general psychological distress, symptom distress, sexual function and vaginal changes, and supportive care needs. Pre-specified regression models were used to examine sources of variation in wellbeing and sexual function. RESULTS: Women reported lower emotional, functional and physical wellbeing than population norms (all p < 0.001). The prevalence of general psychological distress was 31% (95% CI 26-36%). Distress caused by physical symptoms was typically low. Health system and information needs comprised eight of the top ten moderate-to-high supportive care needs. Most women reported no change in interest for physical contact or sex compared to pre-diagnosis, but some sexually active women (16-24%) reported smaller vaginal size, increased dryness, and more pain on intercourse. General psychological distress was a robust marker of poorer wellbeing and sexual function. CONCLUSIONS: Before radiotherapy, a substantial minority of women with gynaecological cancers experience general psychological distress, reduced wellbeing and moderate-to-high health system and information needs. A model of comprehensive care incorporating assessment of unmet needs, general psychological distress, and sexual issues is recommended. Healthcare providers may require training to elicit and respond to a constellation of interrelated issues and access relevant services for women requiring additional support.

How will cancer survivors use survivorship care plans?

BACKGROUND: Survivorship care plans (SCPs) are internationally endorsed as an important tool to enhance post-treatment survivorship care. To support broad implementation of SCPs, we investigated survivors' preferences regarding SCPs. MATERIAL AND METHODS: The study was conducted at a comprehensive cancer center. Eligible patients from 10 clinical services, generally up to 12 months following end of treatment (EOT) were approached in clinics or via telephone. A purpose-designed survey assessed survivors' intended use of a SCP and preferences regarding format and content. Intended minimum sample size of 200. RESULTS: Two hundred and thirty surveys were returned (response rate 68%). Of the 230 participants, over 55% had completed treatment within six months, 35% between six and 12 months, and 10% were receiving ongoing treatments. Most (82%) had not received a SCP and more than one third (42%) reported receiving no information resources at EOT. Almost all (98%) desired further information. Most common information elements desired in a SCP: 'list of symptoms to watch out for and report' (76%), 'summary of treatment received' (70%) and 'things I can do to look after myself' (67%). Most common suggested uses were as: 'a record of cancer treatment' (63%), 'a reminder of things to do to look after myself ' (57%) and 'to help me understand my cancer experience' (56%). Over half (52%) would share the information with their general practitioner. Most indicated preference for paper-based SCPs (91%). There was support for both brief (36%) and detailed versions (42%). Over half requested the information be delivered in a face-to-face discussion with a health professional. Regular telephone support from the treating health care team was most commonly suggested as an additional service to support survivors after EOT. CONCLUSIONS: Although similar to international findings, results suggest alternate ways of providing the information that survivors desire. Most desired SCP elements have been defined. A flexible approach to SCP interventions is justified.

Evaluation of a hospital-based cancer information and support centre.

BACKGROUND: Although information seeking is encouraged by health care professionals as a positive coping strategy evidence suggests information needs of those affected by cancer are not always fully met. In response to the need for novel models of information provision and educational support for people affected by cancer, a hospital-based cancer information and support centre (CISC) was introduced into a tertiary cancer hospital. Professional support is provided by a cancer support nurse (CSN) with the clinical experience of working with cancer patients, whilst peer support is provided by volunteers. MATERIALS AND METHODS: A survey was developed to ascertain the perceptions and experiences of consumers (users) of a hospital-based CISC. The aim was to understand what information and support patients and families consider important and helpful in order to develop the service to reflect the needs of its users. During a 12-month period 111 surveys were distributed to users of the centre. RESULTS: Sixty-nine surveys were returned (62.1%). Nearly all visits were motivated by the need to access (58/84.0%) information, indicating an unmet or changing need. The CSN initiated referrals to support services, both internal and community based, for 21 (53.9%) participants with whom there was contact. Contact with the CISC volunteers also resulted in internal or community-based referrals for 15 (32.6%) of participants. Of note, half of the participants (35/50.7%) reported seeking additional information from the internet as a consequence of having visited the CISC and/or having contact with the CSN or volunteer, in contrast to the six (8.7%) who had reported internet use for information prior to their first visit. Participants indicated a desire for the service to provide additional support to enhance self-care capacity and to do so alongside other people affected by cancer. CONCLUSIONS: Our study results support the capacity of a hospital-based CISC to provide a highly valued service that can broaden information options and meet changing information and support needs of people affected by cancer in an ongoing capacity. An experienced, qualified CSN in this setting is ideally positioned to screen for unmet information and support needs and deliver tailored education to support both inpatient and ambulatory care services. Information prescriptions have the potential to provide a 'directed information seeking approach' to those who visit a CISC. Through the use of information technology there is scope to develop information and support that expands beyond pamphlets and booklets.

Evaluation of a pilot 'peer support' training programme for volunteers in a hospital-based cancer information and support centre.

PURPOSE: Volunteers from Peter MacCallum Cancer Centre (Peter Mac) Patient Information and Support Centre (PISC) assist the Cancer Support Nurse by helping patients and families/carers find information and provide face-to-face peer support. Benefits of shared personal experiences between volunteer and patient are clearly different from professional support. Volunteers require specific skill sets and detailed preparation for this role. MATERIALS AND METHODS: Volunteers completed a 3-day training programme adapted from the Cancer Council Victoria's 'Cancer Connect Telephone Peer Support Volunteer' training programme. The focus was role expectations and boundaries for peer support volunteers, debriefing, communication skills training, support services, complementary and alternative therapies and internet information. Assessment included a quiz and observation for a range of competencies. Role-play with simulated patients developed appropriate support skills. RESULTS: Eight volunteers participated. Pre-training questionnaires revealed all volunteers highly self-rated existing skills supporting people affected by cancer. During training, volunteers recognised these skills were inadequate. All agreed that role-play using an actor as a 'simulated patient' helped develop communication skills; however, the experience proved challenging. Post-training all reported increased knowledge of role definition and boundaries, supportive communication skills, supports available for patients and families/carers and importance of self-care. Facilitators recommended seven of the eight participants be accredited PISC Peer Support Volunteers. One volunteer was assessed unsuitable for consistently overstepping the boundaries of the peer support role and withdrew from training. CONCLUSION: Success of the programme resulted in a trained 'face-to-face peer support volunteer' group better equipped for their role. Sixteen months following training, all who completed the programme remain active volunteers in the PISC. Planned educational updates include needs identified by the volunteers. The training programme would require adapting for future peer support volunteers.

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

BACKGROUND: The 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. AIM: The 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 METHODS: Findings 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. RESULTS: One 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 PRACTICE: The 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. CONCLUSIONS: Research 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.

Burden of bone disease.

OBJECTIVES: Malignant bone disease can cause clinically relevant skeletal morbidity that negatively affects quality of life. The prevalence and consequences of skeletal-related events (SREs) resulting from bone metastases, and the effects of bone metastasis therapies will be discussed. METHODS: The burden of bone disease was researched through PubMed and the proceedings of international oncology meetings. RESULTS: Malignant bone disease is a potentially devastating condition that is prevalent in patients with advanced cancers. Most patients with bone metastases experience at least 1 SRE, which may reduce survival and add considerably to healthcare costs. Bone pain, the most common source of severe pain in these patients, can often be managed with analgesics or radiotherapy. However, treatment may be difficult because of associated side effects. Bisphosphonates palliate bone pain and can treat the underlying cause of the symptoms: malignant osteolysis. Preventing or delaying the onset of SREs is crucial because patients with an SRE have an increased risk of additional SREs, thereby reducing quality of life. CONCLUSIONS: Metastatic bone disease is a tremendous burden on patients and society. Supportive therapy with zoledronic acid has shown benefits for patients with bone metastases by delaying the onset and reducing the incidence of SREs, thus preserving patients' quality of life and functional independence.

The Impact of Survivorship Care Planning on Patients, General Practitioners, and Hospital-Based Staff.

BACKGROUND: In 2005, the Institute of Medicine recommended that all cancer patients receive a survivorship care plan (SCP). Despite widespread support, few centers have routinely implemented them. Understanding of their impact is limited. OBJECTIVES: The aims of this study were to examine the impact of SCP delivery on patients and healthcare professionals at an Australian comprehensive cancer center and determine enablers and barriers to implementation. METHODS: Six groups were surveyed: (1) patients who had received SCPs; (2) nurse coordinators using SCPs, (3) general practitioners (primary care, GPs) of patients who had received SCPs, (4) clinical service chairs, (5) heads of allied health, and (6) nurse coordinators not using SCPs (nonengaged nurse coordinators). Groups 1 to 3 completed written questionnaires. Groups 4 to 6 participated in semistructured interviews. RESULTS: Fifty patients, 7 nurse coordinators, 18 GPs, 7 clinical service chairs, 4 heads of allied health, and 8 nonengaged nurse coordinators participated. Eighty-seven percent of patients considered the SCP to be very or somewhat useful; 50% felt it helped them understand their cancer experience. All engaged nurse coordinators reported SCPs to be very or somewhat useful, and 86% believed SCPs improved communication with GPs. General practitioners felt SCPs were very or somewhat useful (67%) and wished to receive SCPs for future patients (83%). Organizational and clinical leadership, multidisciplinary engagement, resourcing, and timing of SCP delivery were considered critical enablers. CONCLUSION: Patients and healthcare professionals support the use of SCPs; however, they are resource intensive and require significant organizational support. IMPLICATIONS FOR PRACTICE: Nurses are instrumental to SCP implementation. Attention to enablers and barriers is important for successful implementation.

Implementing novel models of posttreatment care for cancer survivors: Enablers, challenges and recommendations.

AIM: The American Society of Clinical Oncology and US Institute of Medicine emphasize the need to trial novel models of posttreatment care, and disseminate findings. In 2011, the Victorian State Government (Australia) established the Victorian Cancer Survivorship Program (VCSP), funding six 2-year demonstration projects, targeting end of initial cancer treatment. Projects considered various models, enrolling people of differing cancer types, age and residential areas. We sought to determine common enablers of success, as well as challenges/barriers. METHODS: Throughout the duration of the projects, a formal "community of practice" met regularly to share experiences. Projects provided regular formal progress reports. An analysis framework was developed to synthesize key themes and identify critical enablers and challenges. Two external reviewers examined final project reports. Discussion with project teams clarified content. RESULTS: Survivors reported interventions to be acceptable, appropriate and effective. Strong clinical leadership was identified as a critical success factor. Workforce education was recognized as important. Partnerships with consumers, primary care and community organizations; risk stratified pathways with rapid re-access to specialist care; and early preparation for survivorship, self-management and shared care models supported positive project outcomes. Tailoring care to individual needs and predicted risks was supported. Challenges included: lack of valid assessment and prediction tools; limited evidence to support novel care models; workforce redesign; and effective engagement with community-based care and issues around survivorship terminology. CONCLUSION: The VCSP project outcomes have added to growing evidence around posttreatment care. Future projects should consider the identified enablers and challenges when designing and implementing survivorship care.