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.

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.

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.