TrueNTH solutions: an integrated multi-component intervention to improve the lives of men with prostate cancer in Australia

Men with prostate cancer and their partner/carer will receive a 12 month individualised intervention. 1. Care coordination Local service providers and the central care coordination service where necessary, will work collaboratively to implement coordination interventions. These include screening, assessment, navigation, information and education, ongoing monitoring, and practical and social support. Consented men will receive an initial consultation with a Care Coordinator, face-to-face or via videoconferencing or telephone, to assess their symptoms and health needs and provide tailored information and education. The duration of the initial consultation varies according to the man's stage of disease and health needs. The mode of the consultation will depend on local service availability, access and preferences of the man. The Care Coordinator will then communicate with the man's care providers (i.e. specialist medical doctors, nurses, allied health practitioners and general practitioner) to develop a care plan for the man, which contains referrals to other relevant prostate cancer services. The man will also be provided with access to a webpage that can be accessed via a computer or a mobile device. On this webpage, he will be able to enter symptoms related to recovery from prostate cancer that he may be experiencing. This will allow the Care Coordinator and other health professionals involved in his care to closely monitor his recovery from the effects of prostate cancer and provide ongoing advice and support over 12 months. If men do not have access to a computer or mobile device, hard copies of the care plan and/or other information will be provided, as required. The Care Coordinator and other health professionals involved in the care can provide ongoing assessment, monitoring and support face-to-face or via a telephone. Based on assessment of needs and preferences, the Care Coordinator may also refer the man to relevant support services to address practical needs relating to transport, accommodation, finance, legal, employment, partners/carers support and advance care planning as required. The coordination service will also provide information to the man and his carer about a range of peer support programs. 2. Decision support Men who have been newly diagnosed with localized prostate cancer will have access to an online decision support aid, the Personal Patient Profile Prostate (P3P), which will support the man in understanding the treatment options and adverse effects against his own values and thus reduce the burden of making the decision and later decision regret, and improve informed consent. P3P is developed and evaluated in the US and has been modified to suit the Australian context (language/text, definitions, statistics, videos and web links). 3. Lifestyle management An appropriate, prescribed, evidence-based exercise program developed by TrueNTH researchers at Edith Cowan University (ECU) will be provided to men with prostate cancer regardless of their stage of disease; past, current or future treatments; financial capacity; or geographic location. Where possible, the exercise prescription once developed will be implemented in face-to-face consultations; or by telephone or videoconference with a local accredited exercise physiologist (AEP) identified by the TrueNTH team. The exercise prescriptions will be tailored to the individual to address the specific issues causing men's greatest concern, to prepare them for future treatments such as surgery, or to address post-treatment issues. The exercises performed and the number, frequency and duration of exercise sessions will thus be determined on an individual basis. Regular monitoring of the man will ensure safety as well as providing motivation to continue to adhere to the exercise prescription. In addition, all men will undergo an initial nutrition screening with the TrueNTH service at point of entry. The initial consult with the TrueNTH Dietitian will assess the need for referral to a local Accredited Practicing Dietitian (APD), or continue servicing the man through teleconferencing or video conferencing. Referral will be made to a local APD for a comprehensive nutritional assessment where possible depending on the capacity of the local health service and the preference of the man. The duration of the initial nutrition consultation with the dietitian varies according to the man's stage of disease and nutritional needs. 4. Specialized clinical support services The care coordinator will work with the man's treating team to match services to the need and preference of the man and his partner/carer at entry and at any point during the intervention. The navigation will involve referral to the following specialist services where required, using specified study protocols: * Psychological support and management The care coordinator will undertake the screening using the 'distress thermometer' and identify factors associated with any distress. For men and/or partners/carers with moderate or high level needs at referral or at any follow up assessment, referral will be made to local or central psychological support and management services. * Sexual recovery The intervention aims to provide a range of sexual rehabilitation interventions tailored to the needs of the individual/couple and stratified according to needs and risk factors. This intervention will commence pre-treatment where possible. At the initial care coordinator consultation, all men will receive standard information and education relating to sexual recovery issues. Assessment and ongoing monitoring will identify men with sexual recovery needs who require additional services. Where required these men will be referred to a relationship and intimacy counsellor with expertise in prostate cancer locally, and if not available locally will be referred to the Monash Health or Royal Women's Hospital intimacy and relationship counselling service (Victoria); and/or erectile dysfunction management supported by Men's Erectile Solutions (Queensland). * Continence management At the initial care coordinator consultation, all men will receive standard information and education relating to continence issues. Assessment and ongoing monitoring will identify men with continence needs who require additional services. These men will be referred to local continence advisors where available and/or referred to the Continence Foundation Australia (CFA) if such services are not available. CFA will liaise with the treating specialist team to contribute to development of a continence plan through advice and expertise. 5. Prostate cancer comorbidities management At entry to the intervention, the care coordinator will liaise with the man's GP to facilitate the assessments for metabolic risk assessment (for men with advanced prostate cancer) or for comorbidities (for men with localised prostate cancer). Based on this assessment the GP can liaise with the treating team to facilitate management of any identified risks and conditions. 6. Partner/carer support The care coordinator will also provide partner/carer support as appropriate, including information provision and referral to local or central counselling services as required. Partners/carers are encouraged to attend appointments with the man. If the partner/carer is identified as needing care, a care plan will be developed. The referral and follow up processes for the partner/carer will be similar to the man. Not all men will need to access all of the TrueNTH intervention components. The man will only be referred to the components needed, as identified during screening and assessment, and agreed by the treating specialist/team.