Monday 3rd December 2012
Part four of Sharing good practice, by Anne Wilkinson, National Improvement Lead, NHS Improvement.
The National cancer patient experience survey 2011/121 found that only 24% of people with cancer said they have been offered an assessment and care plan. Although many organisations are starting to implement a more structured approach to assessment and care planning, we are still a long way from widespread use. This report aims to provide a sample of the evidence on assessment and care planning, and learning gained through testing and implementation in the UK and overseas.
Many studies have assessed patient needs following treatment for cancer. A study by Armes et al2 of 1,425 patients found that 30% reported more than five unmet needs after treatment. A further UK example3 of 741 men with prostate cancer, found that patients had significant unmet supportive care needs, especially relating to psychological distress, sexuality and enduring urinary tract symptoms.
While needs generally reduce over time, a study in Australia4 of people who were 2-10 years post-breast cancer treatment and disease-free, found that irrespective of the years since diagnosis, high rates of anxiety and supportive care needs were reported up to 10 years post treatment. This raises the question of how long-term needs are managed, especially following the end of any formal follow-up.
There are several published articles about assessment tools and their validity. A useful study5 by Richardson et al reviewed over 40 tools, of which 15 were found to help assess needs and inform care planning in people with cancer.
The review discusses the importance of systemic (or holistic) assessment of needs in routine care and the contribution that tools can make to this process. The review concluded that some of the tools had considerable merit, though there was nothing to suggest that one was more fit-for-purpose than another, and that the lack of testing in a practical care setting was a severe limitation of all the tools reviewed.
The Distress Thermometer (DT) and problem checklist have been widely adopted in the UK, but with a variety of adaptations. The DT was originally developed in 1998 by Roth et al, as a quick tool for screening distress in people with cancer. A problem checklist was added to help identify more specific causes of distress. Brennan et al6 suggests that this combined approach provides healthcare professionals with a structure for an efficient yet collaborative assessment of individual concerns.
Assessing needs – when and where?
The National Cancer Action Team (NCAT) guidance, Holistic Common Assessment of Supportive and Palliative Care needs for Adults with Cancer, 7 advises that structured assessments should take place at:
- the time of diagnosis
- commencement of treatment
- completion of primary treatment
- each new episode of disease
- recognition of incurability
- the beginning of end of life
- the point at which dying is diagnosed
- any other time at the patient’s request.
Evidence of any structured needs assessment around diagnosis was not found during this literature search. However, we know that the majority of people with cancer are seen by a CNS at diagnosis, where immediate concerns and anxieties are discussed and information relating to the diagnosis, treatment and key contact numbers is provided.
Feedback from some teams suggests that a structured HNA at diagnosis using a self-assessment tool is inappropriate, and that it is better suited for use with people in treatment or at the end of treatment.
A study in the US8 used the DT and problem checklist with 57 people during their radiology treatment. It found people were receptive to completing the tool and some noted that the experience was the first time they were asked about a number of issues. Staff found the tool easy to use, and reported that it helped identify concerns and opened up a dialogue regarding issues that otherwise may not have been assessed.
A four-month study in the US9 using the National Comprehensive Cancer Network version10 of the DT in breast cancer clinics, found that 34% reported high levels of distress (>5). However, no relationship was seen between high distress and stage of disease, type of current treatment, time since diagnosis, age or other demographic factors.
They concluded that the DT was a useful method to screen, triage and prioritise patient interventions, and it promoted communication between the patient and the healthcare team.
A UK study by Gessler et al11 of 171 outpatients in oncology and palliative care clinics reported that 95% of patients found completing the DT acceptable, and that it is valid and acceptable for use as a rapid screening tool for patients.
Some studies highlighted that a proportion of patients prefer not to participate in any assessment or subsequent care plan discussion. It’s interesting to note that in Brennan’s6 study, the response rate to his survey to ascertain concerns was only 53%. Brennan suggests that not all patients may be receptive to reviewing their concerns once treatment is complete. Testing within NHS Improvement test sites during 2011 (see the summary report at the NCSI website) also found that even if people indicate issues of concern on a self-assessed checklist, they did not always wish to discuss or be referred as a result.
It’s also worth noting that for some people, there is no ‘end of treatment’, for example people with prostate cancer on hormone treatment, active surveillance or ‘watchful waiting’. When is the best time to offer a HNA and care plan review? Perhaps the absence of any obvious review point may explain why so many people in this group suffer long-term, unmet needs.
Some NHS Improvement test sites offered urology patients an HNA at the point of transfer to a self-management pathway, which was often 1-2 years after treatment ended. This identified patient needs that could have been resolved sooner had the opportunity for a discussion been made available.
A qualitative study12 in Leeds, which explored the views of staff and patients in assessing needs, found that many patients felt the psychological effects of treatment were not discussed, and oncologists recognised that they do not consistently enquire about it. Patients had differing views about whether to discuss the effects of cancer on their personal/intimate relationships, and both patients and professionals felt this would depend on the age and gender of the clinician and patient. Questions about the roles of different healthcare professionals found that some patients only wanted the oncologist to treat the cancer and preferred to talk about emotional, family and social issues with the nurses.
Testing assessment tools within NHS Improvement test communities in 2010/11 (see summary report)13 found that some sites sent self-assessment forms to patients to complete prior to the appointment, while others arranged for these to be completed in clinic waiting area prior to the appointment. No preferred method was found, with some preferring to complete it at home with their family, and others with the support of a healthcare professional.
Some found the tool raised concerns that made them worry about issues they had not previously thought about. Others commented that the assessment tools focused on past rather than future needs.
The use of touch screen technology or web-based tools to support self-assessment was found to be acceptable in two studies. Velicova et al14 trialled touch screen assessment tools with 149 people undergoing chemotherapy. Patients found the approach acceptable and easy to use. A study15 in Sweden tested paper questionnaires versus touch screen questionnaires for a range of quality of life measures. It found both methods yielded almost identical results in quality of care ratings, but the touch-screen method was perceived to be easier to use and to take less time to complete.
Do patients find care plans valuable?
Although there are some excellent guidance documents available in the UK16 and elsewhere,17,18 there is little evidence available that explores the value of a care plan to the patient once completed. However, a survey* of 1,200 patients conducted by Ipsos MORI in 2011, found that of the 21% patients who reported having a care plan, the vast majority (84%) said that it was useful.
Irrespective of what assessment tool is used, the most important aspect is that the assessment leads to a discussion with the patient and that, where possible, needs and concerns are addressed. The offer of a written care plan should always be made.
The NCAT practical guide for healthcare professionals19 provides no specific structure for a care plan but it does suggest core, minimum content.
A study in the US20 to test the implementation of ‘survivorship care plans’ in four organisations found them to be flexible documents that can be successfully adapted for use in a variety of settings, from primary to secondary care. Assessments were led by either the doctor or nurse; some were conducted by phone and some supported by education programmes covering a variety of survivorship topics.
All plans contained a Treatment Summary, assessment of needs, follow-up plans and any further interventions. So why has uptake been slow? We know that the formal introduction of assessment and care planning presents challenges for teams, especially in the current climate. CNS shortages, time, space and skills are all factors, and some adjustments to the working week are usually required to ensure ‘protected session time’ to complete assessments.
Other barriers identified at a workshop22 led by NCAT for cancer network leads in 2009 included:
- a lack of confidence to undertake assessments, a culture that still focuses on the disease rather than the person, unclear ownership of assessment information and practical issues relating to CNS time and space.
- A study by Macguire and Pitceathly23 on the reasons why professionals distance themselves from discussing patients’ distress included: lack of communication training, fear of difficult questions and causing distress, and a lack of practical and emotional support.
A recent study in Southampton24 looked at the role of the CNS and the perceived lack of time to undertake an HNA due to competing demands. It found that there was duplication of tasks between the CNS and MDT coordinators, and that each CNS spent 1.5 hrs a day on administrative duties. The study also recorded some of the barriers to implementation, such as concerns about the lack of available support services or worries about uncovering problems that can’t be solved.
Lack of training is an important factor and feedback suggests that staff don’t always feel confident undertaking assessments. A training programme available to NHS organisations found25 that training helped improve self-confidence to recognise different levels of distress and manage issues as they arose.
Professionals also have a role in supporting patients return to active and fulfilling lives. Rollnick et al26 describes motivational interviewing as a guiding style to engage with patients, clarify their strengths, aspirations and motivations, and promote autonomy of decision making. It has particular relevance at the end of treatment when people may wish to set new goals.
There is a wealth of evidence on the needs of people with cancer and the use and validity of assessment tools. However, there is very little evidence to support the value of the HNA process and care plan to the patient. More widespread adoption of HNA and care planning will provide opportunities for further research and evidence gathering, and ensure that it really does improve the experience and coordination of care for people with cancer.
* National Cancer Survivorship Initiative. Evaluation of Adult Cancer Aftercare Services - Wave 1 Report [PDF, 1.24 MB]. 28 October 2011.
About the author
Anne is a National Improvement Lead with NHS Improvement. She has been working with the NCSI for the past three years, supporting clinical teams to test and implement new models of care for those living with and beyond cancer. She is a nurse by background and has over ten years experience working in service improvement. She is committed to improving the quality of services for patients. Email Anne.
See the references page for this Sharing good practice.
Continue reading Sharing good practice
Back to part one - Holistic needs assessment and care planning
Back to part two - Secondary care perspective
Back to part three - Test site perspective
Part five - Policy
Part six- Resources
Part seven - References
References for this Sharing good practice.