Introduction
A needs assessment can be a systematic method of identifying unmet health and healthcare needs of a population or an individual allowing for estimations of the prevalence of needs and the magnitude of help required. [1-3] In determining priorities, it considers what should be done, what can be done, and what can be afforded. [1,3] A national health needs assessment for palliative care has been published in New Zealand. [3-4] In Australia, a needs assessment guide has been published but it relates to general medical services and is not specific to palliative care. [1]
The assessment of needs forms part of the WHO definition of palliative care and the basis of individualised and holistic care. [5-9] For people approaching or at the end of their life or living with dementia, meeting their needs and those of their carers can improve their quality of life. [5,10-11] Needs assessment explores and identifies the needs of a person and their family including consideration of what is important to them and the goals of care. [2,5-7,9,12-16] It may be used to trigger the initiation of palliative care. [17]
Anticipatory medical care is an important component of palliative care particularly home-based or community palliative care. When a person is identified as being in the last few weeks or months of life, the approach to their care is primarily palliative and will include appropriate planning and anticipation of future care needs. This may include “preferred place of care”, out of hours support, and anticipatory prescribing. [18-20] Anticipatory medical care focuses on the medical and health-related needs and differs slightly from needs assessment.
More can be read in Care Coordination and Managing Crises. Information about prescribing and anticipatory prescribing can be found in the Symptoms and Medicines section of palliAGED and in the CareSearchgp app. Information on Syringe Drivers may also be useful. The needs of carer may also need to be considered. You can find out more on the Family Carers pages.
Quality Statement
The quality of the included papers is acceptable. The literature on the topic of needs assessments in palliative care for older people relates to frailty [21], heart failure [17,22-23], chronic obstructive pulmonary disease (COPD) [15-16], and carers of people with dementia. [2,10,13-14,24] Several papers addressed needs assessment in palliative care for a general adult population. [1,3-7,9,25-27] Two papers focussed on comprehensive geriatric assessments (CGAs). [12,28] Papers focussing on needs assessment for older adults were not specific to palliative care. [8,12] Other literature was included to give context to this topic. [11,18-20,29] Guidelines for needs assessment in palliative care were published in New Zealand. [3-4]
Evidence Synthesis
An increasing number of older adults needing palliative care will live alone and wish to remain at home. [26] Informal support networks, technical aids and needs-based services form part of the emerging research investigating ways to allow older people at end-of-life to be cared for and to die at home, with optimal quality of life and minimal hospitalisations. [26]
Older and/or frail adults have complex and changing needs and may require a range of services provided over an extended period. [8] Best-practice suggests that needs assessment forms an important part of palliative care in all settings. [5,9] Assessing and addressing psychosocial, spiritual and supportive care needs is an important component of comprehensive and holistic palliative care [6,9] and determining which core palliative care services should be provided irrespective of diagnosis. [21]
Evidence suggests that home-based palliative care often meets the physical needs of patients and their carers. [25] However, spiritual and psychosocial concerns are often inadequately addressed. [25] You can read about Spiritual Care as a distinct topic.
Needs Assessment Tools
It is recommended that a needs assessment be conducted at diagnosis of a life-limiting condition, at times of significant change (significant decline or deterioration, or change in family/social support or in functional status), after a hospital admission, and at the request of the family or at the begining of the terminal phase. [5] Needs assessment tools have been developed and tested to assess palliative care and support needs across a variety of settings and diseases. [9]
In a research setting, these measures may be used to develop targeted interventions that are responsive to certain needs and to provide reliable outcome measures to assess the effectiveness of interventions. [2,9,13-14]
Most needs assessment tools have been developed for oncology patients, with validation and other psychometric testing largely being reported for this population. [9]
The Irish Palliative Care Needs Assessment (2014) tool comprises questions related to four domains of well-being: physical, social and occupational, psychological, and spiritual. [5] A health professional competent in the conduct of the assessment can use this series of questions to identify needs (identified or anticipated) to plan care or to refer a client to specialist palliative care. [5] This tool is not specific for older adults.
Other tools that can be used but not specific to older adults are the:
Needs Assessment in Frailty
A significant proportion of older people in developed countries will spend the last year of their life in poor health (co-existing conditions and/or frailty) and perhaps in social isolation. [21,26] Understanding the needs of people with frailty who are nearing the end of their life is fundamental to providing appropriate care and support, and important as people with frailty have varying needs. [21] A recent systematic review highlighted the range of specific physical and psychosocial needs of people with frailty yet their functional and cognitive impairment may not always be assessed in a standard manner as there are variances in the way frailty is defined and measured. [21] Although people with frailty are more likely to express a preference for reduced treatment or interventions at the end of life, they are often assessed in hospital in a critical phase of their life. [21] With an improved awareness of frailty, primary care services could assess and meet many of these physical needs and coordinate any specialist input as part of regular (non-emergency) care. [21]
A comprehensive multi-disciplinary geriatric assessment can be used to plan appropriate and coordinated care relevant to identified needs of older people who are frail or who have complex needs. [8-9,28] The five main domains assessed in the Comprehensive Geriatric Assessment (CGA) are physical health, mental health, functional ability, social functioning and environmental context. [28] A CGA is commonly used to assist frail older people hospitalised with an acute illness [28] as this is where they are most likely to be assessed and where they will be at a critical phase in their care. [21]
The EASY-care CGA tool is designed for assessing the unmet health and social needs of older people living in the community. [12] There is strong evidence for the validity and acceptability of EASY-Care as a personal needs assessment. [12] Although the tool has good acceptability internationally, the evidence is limited for the tool’s reliability for population-level needs assessment or as a diagnostic tool for frailty. [12]
More information on comorbidity and frailty is available from the palliAGED pages Comorbidity and Multimorbidity.
Needs Assessment in Heart Failure
Heart failure (HF) is increasingly common in older people. In HF patients, symptoms such as shortness of breath, pain, anorexia, fatigue, and depression are often overlooked and undertreated. [22] Late referral to palliative care eliminates the opportunity to discuss advance care planning, manage troublesome symptoms, and improve overall quality of life at a more functional stage in the disease. [22] The Needs Assessment for Progressive Disease-Heart Failure (NAT: PD-HF) (Figure 2, 3 and 4) assesses multidimensional needs for both HF patients and their carers. [9,17,22] and can be used in generalist as well as specialist palliative care settings. [17] Testing has shown it to be easy to administer, comprehensive and relevant for people with chronic heart failure (CHF) and with consistent results being achieved by different users. [9,17,22] A recent systematic review has recommended that the NAT: PD-HF be included in an annual heart failure review to facilitate the early integration of palliative care for HF patients. [22]
A recent position statement from the European Association of Palliative Care recommends the NAT: PD-HF as a useful tool to recognise when a person with heart failure may benefit from palliative care. [23] The position statement also acknowledges that a combination of NAT: PD-HF and SPICT allows for a variety of triggers to flag the need for re-negotiating goals of care. [23]
Another tool, the Heart Failure Needs Assessment Questionnaire (HFNAQ) has been shown to have adequate content validity and internal consistency. [9]
Other tools not specific to heart failure can be used in the care of people with chronic heart failure as they include indicators of:
More information can be read in CareSearch Clinical Evidence topic Heart Failure.
Needs Assessment in Chronic Obstructive Pulmonary Disease (COPD)
People in the advanced stage of chronic obstructive pulmonary disease (COPD) can experience a range of debilitating physical symptoms, resulting in a loss of functionality and high levels of psychosocial distress. [16]
The Clinical COPD questionnaire (CCQ) and the COPD Assessment Tool (CAT) are two brief tools that can be used to screen patients for physical symptoms, functional status, and emotional well-being. These tools can be completed by the patient and take approximately 2 minutes. Both tools exhibit adequate reliability and validity. [9] The Palliative Outcome Scale POS is another tool used to assess needs in COPD. [9]
A recent review identified the support needs of people with COPD. [16] This led to development of the Support Needs Approach for Patients (SNAP) tool to address the needs of people with COPD. It has been shown to have good face validity (acceptable to patients), content validity (the tool items reflect patient support needs), and criterion validity (evidence of a relationship between items on the SNAP tool and established clinical indicators of patient need). [15]
Needs Assessment in Dementia
The Clinical Practice Guidelines and Principles of Care for People with Dementia emphasise the importance of responding to the needs of the person with dementia when providing relevant and accessible information, developing a care plan, and minimising stressors. [24] The needs of carers of people with dementia are also acknowledged as they are at an increased risk of poor health and their needs should be assessed and reviewed regularly by their own health practitioner. [2,13-14,24] The IPOS-Dem is a tool used to assess how certain symptoms and problems have affected a resident with dementia over the previous week. [29] The tool assesses physical, functional, psychosocial, and practical aspects of the person’s life. Two questions consider the experience of the family.
Carer and family needs should be addressed regularly, even if the person with dementia has entered residential care and after their death. [24] A needs assessment allows carers to identify the needs for which they most need help and to identify the carers who experience higher levels of unmet needs and therefore require greater support. [2]
The assessment of needs of carers of people with dementia was the focus of three recent reviews. [2,13-14] Novais et al. found that only one instrument was validated to assess the needs of dementia carers: The Carers’ Needs Assessment for Dementia (CNA-D). [14] Mansfield et al. found that the CNA-D had the strongest psychometric properties (validity, reliability and acceptance by respondents) in a critical review of four assessment tools. [2]
A more recent review by Kipfer et al. found that the two best validated instruments (of 14 tools being examined) were Partnering for Better Health - Living with Chronic Illness: Dementia (PBH-LCI:D) and the Questionnaire consultation expectations (EAC). [13] The PBH-LCI:D and EAC contain items covering the most common topics found across all instruments, that is, the need for information and education, needs related to emotional support and the need for other accessible and appropriate services. Both are self-administered (completed by the respondent) which could be perceived as an advantage for healthcare professionals.
For more information visit the palliAGED Cognitive Impairment and Dementia evidence summary and the CareSearch Clinical Evidence topic Advanced Dementia.
Evidence Gaps
- Very few tools exist with a specific focus on the needs of older people at the end of their life and of their carers.
- Most needs assessment tools have been developed for oncology patients, with validation and other psychometric testing largely being reported for this population. There are fewer tools for other patient groups.
- Further evidence of psychometric quality is needed, particularly test–retest reliability, predictive validity, responsiveness, and clinical utility of the tools currently available.
- Integration of needs assessment into an overall needs-based model of palliative care will have the greatest likelihood of positive impacts on patients, carers, and health system outcomes.
- Most of the studies of the needs of people with frailty were conducted in hospitals or intensive healthcare settings. This means that many of the people with frailty were at a critical phase in their care. More research will help determine the assessment and addressing of needs of people earlier in the disease course, and those looked after by less specialised services.
Page updated 22 March 2024