Empowering men with prostate cancer through online holistic needs assessment and care planning.

Problem

Prostate cancer is the most commonly diagnosed cancer in men in the United Kingdom (UK). With a 10 year survival rate now at 84%, there are over 330,000 men in the UK living with and after prostate cancer. Men may live for many years with consequences of prostate cancer and its treatment such as fatigue, sexual and bowel problems and issues of psychological adjustment. Overstretched cancer services must adapt to find ways to address these concerns and to involve men in actively managing their health.

The potential contribution of Holistic Needs Assessment (HNA) and Care Planning to the delivery of new models of long term care for men with prostate cancer has been widely recognised. However time constraints and limitations of paper based assessments are barriers to their effective use.

Approach

To overcome these barriers we have developed an enhanced online system that men may access on any internet enabled device. The output of the assessment can be shared between the patient, his primary care and specialist teams. Links to sources of support and advice in response to concerns identified aim to encourage self-management and build self- efficacy.

The adaptive composite prostate specific HNA (CHAT-P), has been developed over a 3 year period in an iterative process involving face to face and remote user testing and feedback

Following final adjustment and development of the Care Plan we have undertaken alpha testing with 16 men recruited from two hospital clinic lists. Qualitative interview were undertaken to explore participants views.

Findings

Participants were enthusiastic in their response to the HNA. Even men with limited experience of digital technology were keen to use the system. The HNA was found to be comprehensive covering all concerns that they had currently or in the past. A range of suggestions for use of the HNA at all stages of the pathway of care were elicited. Importantly men emphasised that the completion of the HNA should have an outcome either through the provision of some advice, a consultation to discuss the concern or an action taken.

Consequences

The online HNA offers benefit in terms of men being easily able to identify and articulate their concerns to members of their specialist and primary health care team prior to, or where indicated, instead of clinic appointments. Its adaptive nature ensures the relevance of the questions to the individual. This feature limits the burden to the patient and extends the potential for use to men at all stages of the cancer journey and across treatment modalities. Combined with advice and links to sources of support and information it has the potential to reduce the demands on specialist resources. Successful implementation however will be determined by the responsiveness of the system to men’s needs and concerns.