Abstract
Background
The assessment of patients’ needs for care is a critical step in achieving patient-centred cancer care. Tools can be used to assess needs and inform care planning. This review discusses the importance of systematic assessment of needs in routine care and the contribution tools can make to this process.
Method
A rapid appraisal was undertaken to identify currently available tools for patient assessment in cancer care through searches conducted with Medline and CINHAL databases. It focused on tools for the systematic assessment of individual patients’ needs for help, care or support, to be used for clinical purposes—not for research or other purposes. Tools that focused on a single domain of care such as psychosocial needs were excluded, as were studies of patient satisfaction. A wide list of search terms was used, with references stored and managed using bibliographic software.
Results
In all, 1,803 papers were identified from the initial search, with 91 papers found to be relevant; although 36 tools were identified, only 15 tools were found to fit our criteria. These were appraised for their validity, reliability, responsiveness to change and feasibility, including acceptability to patients. The process of their development and psychometric properties were reasonably well documented, but data on how feasible they were to use in practice was scarce. Each tool met some but not all the widely accepted criteria for validity, reliability, responsiveness and burden. None were found to be complete for all dimensions of needs assessment. Most have not been sufficiently well tested for use in routine care.
Conclusion
There is a need to continue to develop and test tools that have the attributes necessary for effective practice and to research their effects on the quality of supportive cancer care.
Similar content being viewed by others
References
Wen K-Y, Gustafson DH (2004) Needs assessment for cancer patients and their families. Health Qual Life Outcomes 2(1):11
NICE (2004) Guidance on cancer services: improving supportive and palliative care for adults with cancer. The Manual. National Institute for Clinical Excellence, London
Brown V et al (2001) The development and evaluation of an instrument to assess the adverse effect of cytotoxic chemotherapy. Final report WaSHN Trust, West Sussex
National Cancer Alliance (1996) Patient centred cancer services? What patients say. NCA, Oxford
National Audit Office (2005) Tackling cancer: improving the patient journey. National Audit Office, London
Farrell C, Lewis J (2000) The cancer experience. National Centre for Social Research (NatCen), London
Maguire P et al (1996) Helping patients disclose their concerns. Eur J Cancer 32A(1):78–81
Wilkinson SM et al (2003) Can intensive three-day programmes improve nurses' communication skills in cancer care? Psycho-oncology 12(8):747–759
Department of Health, Health Service Circular 2002/001/LAC (2002) 1-Guidance on the single assessment process for older people, 2002. Department of Health, London
Glasziou P et al (2001) Systematic reviews in health care: a practical guide. Cambridge University Press, Cambridge
Bowling A (2001) Measuring disease: a review of disease-specific quality of life measurement scales, 2nd edn. Open University Press, Buckinghamshire
Bowling A (2005) Measuring health: a review of quality of life measurement scales, 3rd edn. Open University Press, Berkshire
Fitzpatrick R et al (1998) Evaluating patient-outcome measures for use in clinical trials. Health Technol Assess 2(14):1–74
Hearn J, Higginson I (1997) Outcome measures in palliative care for advanced cancer patients: a review. J Public Health Med 19(2):193–199
Teno J, Landrum K (1996) Toolkit of instruments to measure end of life care. Centre to improve care of the dying. http://www.chcr.brown.edu.pcoc (cited accesses June 2005)
Carr AJ et al (2003) Quality of life. BMJ, London
McHorney C, Tarvlov A (1995) Individual-patient monitoring in clinical practice: are available health surveys adequate? Qual Life Res 4:293–307
Corcoran K, Fischer J (1987) Measures for clinical practice: a sourcebook. The Free Press, London
Osse BH et al (2000) Assessment of the need for palliative care as perceived by individual cancer patients and their families: a review of instruments for improving patient participation in palliative care. Cancer 88(4):900–911
Fitzsimmons D, Ahmedzai S (2004) In: Payne S, Seymour J, Ingleton C (eds) Approaches to assessment in palliative care, in palliative care nursing: principles and evidence for practice. Open University Press, Berkshire, pp 163–185
Ahmedzai SH et al (2004) Improving access to specialist palliative care: Developing a screening measure to assess the distress caused by advanced illness that may require referral to specialist palliative care. Sheffield Palliative Care Studies Group: University of Sheffield and Trent Palliative Care Centre, Sheffield
McCusker J (1984) Development of scales to measure satisfaction and preferences regarding long-term and terminal care. Med Care 22(5):476–493
Wiggers JH et al (1990) Cancer patient satisfaction with care. Cancer 66(3):610–616
Aspinal F et al (2002) A user’s guide to the palliative care outcome scale. Palliative Care and Policy Publications, Kings College, London
Ellershaw JE, Peat SJ, Boys LC (1995) Assessing the effectiveness of a hospital palliative care team. Palliat Med 9:145–152
Higginson IJ, McCarthy M (1993) Validity of the support team assessment schedule: do staffs' ratings reflect those made by patients or their families? Palliat Med 7:219–228
Gates MF, Lackey NR, White MR (1995) Needs of Hospice and clinic patients with cancer. Cancer Pract 3(4):226–232
Thomas C et al (2001) What are the psychosocial needs of cancer patients and their main carers? A study of user experience of cancer services with particular reference to psychosocial need. Project Report. Lancaster University, Institute for Health Research
Ganz PA et al (1992) The CARES: a generic measure of health-related quality of life for patients with cancer. Qual Life Res 1:19–29
Schag CA et al (1994) Quality of life in adult survivors of lung, colon and prostate cancer. Qual Life Res 3:127–141
Schag CC, Heinrich RL, Ganz P (1983) Cancer inventory of problem situations: an instrument for assessing cancer patients' rehabilitation needs. J Psychosoc Oncol 1(4):11–24
Fortner B et al (2003) The cancer care monitor: psychometric content evaluation and pilot testing of a computer administered system for symptom screening and quality of life in adult cancer patients. J Pain Symptom Manage 26(6):1077–1092
Ruland CM (1999) Decision support for patient preference-based care planning: effects on nursing care and patient outcomes. J Am Med Inform Assoc 6(4):304–312
Ruland CM (2002) Handheld technology to improve patient care: evaluating a support system for preference-based care planning at the bedside. J Am Med Inform Assoc 9(2):192–201
Ruland CM et al (2003) Effects of a computerized system to support shared decision making in symptom management of cancer patients: preliminary results. J Am Med Inform Assoc 10(6):573–579
Harrison J et al (1994) Concerns, confiding and psychiatric disorder in newly diagnosed cancer patients: a descriptive study. Psycho-oncology 3:173–179
Heaven CM, Maguire P (1997) Disclosure of concerns by hospice patients and their identification by nurses. Palliat Med 11:283–290
Heaven CM, Maguire P (1998) The relationship between patients’ concerns and psychological distress in a hospice setting. Psycho-Oncology 7:502–507
Heaven CM, Maguire P (1996) Training hospice nurses to elicit patients concerns. J Adv Nurs 23:280–286
Devlen J (1984) Psychological and social aspects of Hodgkins disease and non-Hodgkins lymphoma. University of Manchester, Manchester
National Comprehensive Cancer Network, Distress Management (2003) National Comprehensive Cancer Network (NCCN): clinical practice guidelines in oncology, vol 1, 2003
Crooks DL et al (2004) The Initial Health Assessment: an intervention to identify the supportive care needs of cancer patients. Support Care Cancer 12(1):19–24
Asadi-Lari M, Tamburini M, Gray D (2004) Patients’ needs, satisfaction, and health related quality of life: towards a comprehensive model. Health Qual Life Outcomes 2:32
Tamburini M et al (2000) Assessment of hospitalized cancer patients’ needs by the needs evaluation questionnaire. Ann Oncol 11:31–37
Tamburini M et al (2003) Cancer patients' needs during hospitalisation: a quantitative and qualitative study. BMC Cancer 3(12)
Emanuel EJ, Emanuel LL (1998) The promise of a good death. Lancet 351(Suppl 2):S21–S29
Emanuel LL et al (2000) What terminally ill patients care about: toward a validated construct of patients' perspectives. J Palliat Med 3(4):419–431
Emanuel LL, Alpert HR, Emanuel EE (2001) Concise screening questions for clinical assessments of terminal care: the needs near the end-of-life care screening tool. J Palliat Med 4(4):465–474
Romsaas EP et al (1983) A method for assessing the rehabilitation needs of oncology outpatients. Oncol Nurs Forum 10(3):17–21
Coyle N et al (1996) Development and validation of a patient needs assessment tool (PNAT) for oncology clinicians. Cancer Nurs 19(2):81–92
Osse BH et al (2004) Towards a new clinical tool for needs assessment in the palliative care of cancer patients: the PNPC instrument. J Pain Symptom Manage 28(4):329–341
Osse BHP et al (2002) Problems to discuss with cancer patients in palliative care: a comprehensive approach. Patient Educ Couns 47(3):195–204
Cull A, Stewart M, Altman D (1995) Assessment of and intervention for psychosocial problems in routine oncology practice. Br J Cancer 72:229–235
Wright EP et al (2001) Detecting social problems in cancer patients. Psycho-oncology 10:242–250
Bonevski B et al (2000) Evaluation of an instrument to assess the needs of patients with cancer. Cancer 88:217–225
McElduff P et al (2004) Supportive care needs survey: a guide to administration, scoring and analysis. Centre for Health Research and Psycho-oncology (CHeRP). The University of Newcastle, Newcastle, Australia
Foot G, Sanson-Fisher R (1995) Measuring the unmet needs of people living with cancer. Cancer Forum 19:131–135
Ahmed N et al (2004) Systematic review of the problems and issues of accessing specialist palliative care by patients, carers and health and social care professionals. Palliat Med 18(6):525–542
Bestall JC et al (2004) Access and referral to specialist palliative care: Patients’ and professionals' experiences. Int J Palliat Nurs 10(8):381–389
Butters EM et al (2005) Assessing symptoms and concerns in patients with advanced cancer: the validity and reliability of a checklist for use in clinical practice (unpublished)
Butters EM et al (2005) Assessing symptoms and concerns in patients with advanced cancer: the development of a checklist for use in clinical practice (unpublished)
Lidstone V et al (2003) Symptoms and concerns amongst cancer outpatients: identifying the need for specialist palliative care. Palliat Med 17:588–595
Jacobsen S (1992) Evaluating instruments for use in clinical nursing research. In: Frank-Stromborg M, Olsen S (eds) Instruments for Clinical Health-care Research. Jones and Bartlett, Sudbury, Massachusetts, pp 3–19
Nunnally JC, Bernstein IH (1994) Psychometric theory, 3rd edn. McGraw-Hill, New York
Schag CC, Ganz PA, Heinrich RL (1991) Cancer rehabilitation evaluation system–short form (CARES-SF). A cancer specific rehabilitation and quality of life instrument. Cancer 68(6):1406–1413
Velikova G et al (2002) Computer-based quality of life questionnaires may contribute to doctor patient interactions in oncology. Br J Cancer 86:51–59
Velikova G et al (1999) Automated collection of quality-of-life data: a comparison of paper and computer touch-screen questionnaires. J Clin Oncol 17(3):998–1007
McLachlan SA et al (2001) Randomized trial of coordinated psychosocial interventions based on patient self-assessments versus standard care to improve the psychosocial functioning of patients with cancer. J Clin Oncol 19(21):4117–4125
Richardson A et al (2005) Patients’ needs assessment tools in cancer care: principles and practice. King’s College London, London
Acknowledgement
The work on which this paper is based was funded by the Cancer Action Team. The views expressed, findings and conclusions are those of the authors and not necessarily the views of the Cancer Action Team.
Author information
Authors and Affiliations
Corresponding author
Rights and permissions
About this article
Cite this article
Richardson, A., Medina, J., Brown, V. et al. Patients’ needs assessment in cancer care: a review of assessment tools. Support Care Cancer 15, 1125–1144 (2007). https://doi.org/10.1007/s00520-006-0205-8
Received:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s00520-006-0205-8