There is evidence to suggest that patients with cancer and other non-malignant chronic progressive illnesses can experience distressing symptoms, or concerns, which can often remain unrecognised. There is little disagreement that routine systematic questioning is useful in identifying supportive or palliative care needs that would otherwise not be identified. The purpose of this article is to provide an overview of holistic needs assessment in the fields of supportive and palliative care and to present evidence of the value of routine systematic questioning. Systematic questioning allows needs to be identified and addressed. There is at present no standardised systematic, evidence-based holistic approach to screening patients for supportive and palliative care needs.
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Working definitions of ‘assessment’ and ‘needs’
The following working definitions of ‘assessment’ and ‘needs’ were part of a Report to the National Cancer Action Team on Holistic Common Assessment of Supportive and Palliative Care Needs for Adults with Cancer (January 2007).1
Assessment: is the overall process for identifying and recording the health and social care needs of an individual and for evaluating their impact on daily living and quality of life so that appropriate action can be agreed and planned with the individual.
Needs: are what an individual requires to be met in order to maintain or improve current states of well-being or to anticipate and manage their deterioration. Areas of supportive and palliative care needs include physical, emotional, spiritual, environmental, social, sexual, financial and cultural.
Concept of holistic assessment (‘medical vs holistic model of care’)
The holistic model of care is often described as ‘patient-centred’, ‘whole-person’ and ‘whole-situation’ (mind, body and spirit approach to care where each domain assessed is given equal importance). This approach challenges the traditional ‘medical model of care’ that is primarily ‘disease-focused’. The ‘holistic model of care’ recognises that any changes or disturbances to either the mind, body or spirit can have an effect on the overall health and quality of life of an individual and the family. These concepts are closely allied to Cicely Saunders’ concept of total pain that underpins palliative care practice and comprises the notions of physical, emotional, social and spiritual pain.2
The National Institute for Health and Care Excellence (NICE) guidance on improving supportive and palliative care for adults with cancer set out a series of recommendations based on research evidence and was thus a major policy document in England and Wales. Service users, professionals and policymakers were consulted during the development phase.3 The NICE guidance recognises the need for patients and their families to have their needs assessed on a regular basis and throughout the course of their illness by a multidisciplinary team.
In response to the NICE guidance recommendation 2, the Cancer Action Team commissioned the Holistic Common Assessment of Supportive and Palliative Care Needs for Adults with Cancer-Assessment Guidance (2007).1 A report by Kings College London accompanied this guidance, which called for a more unified approach to the assessment and recording of patients’ needs (setting out the main features of holistic assessment and providing the core content of the assessment).
The authors of a UK nursing paper present the ‘tangled web of cause and effect’ theory, which proposes that without a comprehensive holistic assessment of an individual the root cause of a problem is unlikely to be identified. In order to ‘unpack’ the complex nature of problems in patients, it is important to undertake a thorough holistic assessment. A poor or inadequate assessment can result in unnecessary distress and suffering.2 A good assessment would inform others providing care from that moment forward, thereby improving continuity of care.
With these considerations in mind, the aim of this feature article is to provide an overview of holistic needs assessment in the fields of supportive and palliative care demonstrating the evidence of the value of routine systematic questioning. We undertook a narrative literature review (not a systematic review) concerning holistic needs assessment in the fields of supportive and palliative care, including both published and unpublished materials. The literature was identified in a systematic manner using an all-inclusive approach with no research methods excluded. A detailed search strategy used to identify the literature and the evidence base is presented in box 1. The following sources were searched: electronic databases, key websites, grey literature sources, hand-searching key journals and contacting experts in the field.
Literature review methodology: search strategy for identification of studies
The following sources were searched (which involved searching electronic databases and key websites, grey literature sources, hand-searching key journals and contacting experts in the field).
Electronic databases searched
No limits were applied to the years searched.
Medline. In-Process & Other Non-Indexed Citations and Ovid MEDLINE(R), British Nursing Index and Archive, PsycInfo, Allied and Complementary Medicine Database (AMED), Cochrane Database of Systematic Reviews (CDSR), Cochrane Controlled Clinical Trials Register (CCTR), Centre for Reviews and Dissemination Databases, Database of Abstracts of Reviews of Effects (DARE), NHS Economic Evaluation Database (NHS EED), Health Technology Assessment (HTA) Database, Cumulative Index to Nursing & Allied Health Literature (CINAHL), the British Library Database (ZETOC), System for Information on Grey Literature in Europe (OpenSIGLE), Scopus, Google Scholar, National Research Register, PubMed U.S. National Library of Medicine, National Institutes of Health, Web of Knowledge (includes Web of Science-Social Sciences Citation Index), Index to thesis, National Institute for Health and Care Excellence, Department of Health, The National Library for Health (http://www.library.nhs.uk), NHS Evidence—Supportive and Palliative care formerly a Specialist Library of the National Library for Health, American Society of Clinical Oncology (ASCO), BIOSIS, NHS Evidence—National Library of Guidelines.
Keywords used to search the literature
Palliative Care OR Supportive Care OR Specialist Palliative Care OR Terminal Care OR Hospice Care OR End of Life Care.
Set 2 and 3 Access OR Assessment of need OR Assessment OR Care planning OR Case notes OR Clinical assessment OR Common approach to assessment OR Consultations OR Doctor-patient interaction OR Evaluation OR evaluation tools OR evaluation methods OR History taking or Holistic assessment OR Holistic needs assessment OR Holistic self-assessment tools OR Interviews OR Measures OR Medical assessment OR Medical clerking OR Medical history OR Medical interview OR Narrative Analysis OR Narrative Medicine OR Narrative synthesis OR Needs assessment OR Nursing assessment OR Oral history OR Patient- physician OR clinician communication OR Questionnaires OR Referral OR Routine assessment OR Scales OR Screening tools OR Standardised holistic assessment OR Symptom assessment OR Symptoms OR Systematic holistic approach OR Systems OR Toolkit OR Tools OR Unmet need OR Validated assessment.
Clinical outcomes OR Improved Health OR health care outcomes OR Improved patient management OR Improved patient well being OR Patient centred care OR Patient Experience OR Patient outcomes OR Psychological morbidity OR anxiety OR depression OR distress OR Quality of life OR Relief of suffering OR Satisfaction with care OR Service utilisation OR Survival OR Survivorship OR Uptake OR Well being.
The following five key journals were hand-searched in an attempt to identify articles that may not have been identified through electronic searches of databases. Hand-searches were limited to journals covering last 10 years (1999–January 2010).
Supportive Care in Cancer
Journal of Pain and Symptom Management
Quality of Life Research
Key websites searched
Centre for Reviews and Dissemination (http://www.york.ac.uk/inst/crd/)
Cochrane Collaboration (http://cochrane.co.uk/en/index.html)
Health Information Resources formerly National Library for Health (http://www.library.nhs.uk/)
Department of Health (http://www.dh.gov.uk/en/index.htm)
National Institute for Health and Care Excellence (http://www.nice.org.uk/)
Contacting experts in the field
Time constraints limited the number of experts contacted. Professor Alison Richardson (Clinical Professor of Cancer Nursing and End of Life Care) and Mathew Fry (Programme Manager Common Assessment Framework Adults), both UK-based, were the two experts that were contacted.
Results of searches
The search strategy generated 35 000 hits and several sifts of published and unpublished abstracts. We obtained 200 full paper copies of articles and on closer examination included and reviewed 63 papers, of which 21 key papers are reported here. The results of this review are presented in relation to the aims.
The results of this review are presented in relation to the research aims. The thematic synthesis of evidence led to the emergence of six themes:
prevalence of concerns, problems and issues in palliative care patients
the need for systematic holistic questioning in palliative care
main features of assessment and core content of assessment
assessment tools and instruments
studies examining the clinical utility of tools
implications for future research and practice.
1. Prevalence of concerns, problems and issues in palliative care patients
There is evidence to suggest that patients with cancer and other non-malignant chronic progressive illnesses can experience distressing symptoms and concerns, which can often remain unrecognised. For this reason, the extension of supportive and palliative care to patients with other non-malignant progressive diseases is pressing, irrespective of diagnosis or prognosis. Previous research has highlighted that distressing symptoms and concerns can be managed and treated, provided they are identified in a timely manner and systems are in place for a prompt referral to appropriate specialist teams.4–8 If these symptoms and concerns are identified early and successfully managed, quality of life and satisfaction with care may be improved. This may also have implications for the configuration and funding of services.
2. The need for systematic holistic questioning in palliative care
There is little disagreement that routine systematic questioning is useful in identifying symptoms, problems and issues that would otherwise not be identified by routine medical and nursing assessment or by using open-ended questions.5 ,7–9 For example, Shah et al7 describe how a study using single open-ended questions that asked palliative care patients what bothers you most during the initial consultation generated a variety of patient concerns. The authors propose the use of ‘single open-ended’ questions to identify ‘most pressing needs’. However, this has the potential to exclude less urgent concerns that are nevertheless important for health professionals’ understanding of a clinical case. This is illustrated by their finding that “physical distress (44%) was reported more often than emotional, spiritual, existential or non-specific distress (16%)”.
For this reason, the ‘total symptom experience’ is best captured using a more systematic holistic assessment. A study that examined symptom evaluation in palliative medicine found that the frequency of symptoms identified during a systematic assessment (using 48-item symptom checklist) were tenfold higher (p<0.001) than those that were volunteered during open-ended questioning. Arguments against using systematic questioning are usually based on the time it takes to complete an assessment, which can be burdensome for this group of poorly and fatigued patients.5
White et al8 described a retrospective chart review study of 50 patients admitted to a specialist palliative care unit. They found that on average eight further symptoms were detected per patient by systematic questioning than self-report (approximately 66% of symptoms were detected by systematic questioning). Pain was the most commonly self-reported symptom in this study. The authors propose a number of reasons that may account for this. Shorthose and Davies10 also cite several reasons for under-reporting of symptoms. The main findings from these two studies are summarised below.
A. Why patients may under-report symptoms
Symptom “is not considered severe, considered unimportant, and reporting or under-reporting is influenced by reason for referral, or referrer” have been cited.8
Symptom is “inevitable, no treatment is available, perception that health care professional will see it as unimportant, and presence of other more important symptoms” have been cited.10
B. Why healthcare professionals may not enquire about some symptoms
Perception that “symptom is uncommon, considered unimportant, no treatment is available and ‘time constraints’ have been cited”.10
It must be stressed, however, that the precise reasons are unclear and require further investigation. It would also be interesting to explore reasons why some concerns, problems and issues may be ‘over-reported’.
Hoekstra et al4 argue that the most ‘severe’ symptom is not necessarily the same as the ‘most troublesome’ and stress the importance of assessing both for an individual patient. Kirkova et al6 report some complexities and challenges of symptom assessment in palliative medicine and highlight the importance of supplementing the clinical interview with validated multisymptom instruments and giving priority to ‘total symptom experience’.
It should be noted that Bruera9 stresses that early identification of and monitoring of symptoms is only useful if effective treatment programmes are in place. He argued that continued repeated assessments of patients’ needs when no systems/treatments are in place to meet those identified needs could be considered unethical.
3. Main features of assessment and core content of assessment
Dunn11 describes assessment as a staging procedure for the dimensions of distress. This paper discusses nine dimensions of whole patient assessment for palliative care: (1) illness/treatment summary, (2) physical, (3) psychological, (4) decision making, (5) communication, (6) social, (7) spiritual, (8) practical and (9) anticipatory planning for death. This paper addresses the duration of the assessment (20–30 min), who should be present at the assessment, and discusses the nine dimensions in considerable detail. Although this was developed by the authors of the American Medical Association's Education for Physicians on End-of-Life Care Curriculum and is aimed primarily for surgeons to aid comprehensive assessment, this model could easily be applied to patients earlier in the disease trajectory. It is debatable whether the full assessment as described by Dunn could be successfully completed in 20–30 min, but this very much depends on the patient and the skills of the assessor.
The Holistic Common Assessment of Supportive and Palliative Care Needs for Adults with Cancer- Assessment Guidance (2007)1 was developed by a team led by Richardson. The initial stages of development involved a scoping exercise that comprised (1) a literature review to identify tools for holistic assessment, (2) a survey of current practice in cancer networks and (3) an appraisal of the Single Assessment Process for older people. This work led to the development of a specification for assessment and a report that set out the main features of an assessment and core content of the assessment. The recommendations are presented in box 2. Although the guidance was written for the assessment of cancer patients, the principles of assessment could easily be applied to other chronic progressive illnesses.
Recommendations from The Holistic Common Assessment of Supportive and Palliative Care Needs for Adults with Cancer-Assessment Guidance (2007).1 (work commissioned by The Cancer Action Team)
The Holistic Common Assessment of Supportive and Palliative Care Needs for Adults with Cancer-Assessment Guidance (2007)1 was developed by a team led by Professor Alison Richardson (Kings College, London, UK). This work led to the development of a specification for assessment and a report that set out the main features of an assessment and core content of the assessment.
Makes reference to five domains of assessment: background information and assessment preferences, physical well-being, social and occupational well-being, psychological well-being and spiritual well-being. The guidance recommends that physical issues are addressed first, and spiritual and psychological issues towards the end.
Holistic assessment is a process that should ideally ‘capture full range of needs’; the use of more than one tool is recommended for this purpose since research suggests that no one tool is capable of ‘capturing full range of needs’.
Holistic assessment should take place throughout the course of the illness (from time of diagnosis, before and after treatments and during follow-up).
Unnecessary repeated assessments should be avoided.
Assessment should be done over several sessions.
Appropriately trained professionals, who have knowledge about the illness, and local services available, should undertake the assessment/s.
Assessment of needs should be seen as ‘patient-led’, ‘patient-centred’, continuous and supplement but not replace day-day assessment.
The guidance recommends that summary records of assessments should be first agreed with patients. This process must take place prior to any further actions being undertaken.
The guidance recommends that records of assessment should be well documented and easily accessible to other professionals within and across settings (though patient consent may be required).
These recommendations carry implications for resources required to achieve adequate assessment. The recommendation that physical issues be addressed first should be acceptable to the majority of patients since it is in accordance with the finding that physical symptoms, notably pain and fatigue, are the most frequently identified as the most important problems.7 Other recommendations include the proposal that the assessment can continue over many sessions and should supplement routine clinical review.
4. Assessment tools and instruments
Richardson et al12 undertook a review of the tools for patient assessment in cancer care; they found and critiqued 15 tools. Table 1 gives a summary of some of these assessment tools used in supportive and palliative care. Their findings indicate that of the 15 tools identified only 6 were considered to be comprehensive with respect to health status. These included (1) Problems and Needs in Palliative Care Instrument, designed for advanced cancer patients and developed in The Netherlands;12 ,13 (2) Oncology Clinic Patient Checklist (OCPC), designed for cancer patients and developed in the USA;12 ,14 (3) Symptoms and Concerns Checklist, designed for advanced cancer patients and developed in the UK;12 ,15 (4) Supportive Care Needs Survey (SCNS), designed for cancer patients and developed in Australia);12 ,16 (5) Sheffield Profile for Assessment and Referral for Care (SPARC), designed for patients with an advanced illness and developed in the UK;17 and (6) the Distress Management Tool, designed for cancer patients and developed in the USA.12 ,18 SPARC and the Distress Management Tool were considered to be the most comprehensive tools identified, according to the author's classification, covering all dimensions of need and in relation to health status. Most tools were developed with specific patient groups in mind such as those with cancer or those at the end of life. SPARC and the Symptoms and Concerns Checklist could be used in primary care. SPARC is a multidimensional holistic tool that provides a profile of needs (including physical, psychological, social and spiritual) to identify patients who may benefit from additional supportive or palliative care regardless of diagnosis or stage of disease. SPARC provides a comprehensive early needs assessment.
5. Studies examining the clinical utility of tools
Several studies have examined the clinical utility of some holistic needs assessment tools. These tools include (1) Palliative Care Assessment Tool (PACA),12 ,19 (2) The Initial Health Assessment (IHA)12 ,20 and (3) Needs at the End of Life Screening Tool (NEST).12 ,21 Although the studies have measured changes in clinical outcomes following needs assessment, few have shown an improvement in clinical or patient-reported outcomes as result of the intervention (administration of the tool). Limitations of these studies may include inadequate power to detect a change, the tools not being comprehensive enough for holistic needs assessments or the outcomes chosen may have been inappropriate. Although many of these studies have shown an improvement in documentation of needs, uptake of any recommendations from the intervention and assessment of needs has been described as poor with no significant overall improvements in care outcomes. The precise reasons for these findings are unclear but could include healthcare professionals’ attitudes, knowledge or skills, as well as timing of and the availability/non-availability of services.21 Scandrett et al21 propose that new methods to achieve practice change should be considered and evaluated when assessing such interventions.
6. Implications for future research and practice
This article has presented a strong argument in favour of the need for a comprehensive holistic assessment of supportive and palliative care needs. Recommendations for conducting a holistic assessment are also presented. There is a lack of studies on the clinical utility of tools.12 Systems and services must be in place in order to address any identified needs in a timely manner, and we must consider and evaluate new methods to achieve practice change. Further research is also needed on the effective integration of these tools into routine clinical care. Future work must therefore address these issues.
The authors would like to express their gratitude to Ms Vicky Grant (Information Specialist, The University of Sheffield) for all the help and advice given on literature search methodology.
Contributors This work was undertaken as part of a doctoral study and is written by NA. The coauthors are supervisors that made suggestions for improvement to the paper.
Funding Macmillan Cancer Support and The University of Sheffield.
Competing interests The authors were part of a team that were involved with the development of an holistic needs assessment questionnaire in a supportive and palliative care service namely; the Sheffield Profile for Assessment and Referral for Care (SPARC).
Provenance and peer review Not commissioned; externally peer reviewed.