Table 1

A summary of the characteristics of some of the key assessment tools used in supportive and palliative care

Instrument, country of origin and reference Patient groupClinical purposeSelf complete? (yes/no)Number of items, domainsResponse formatEvidence of clinical utilityValidation work undertaken (yes/no/unknown)
Oncology Clinic Patient Checklist (OCPC), USA,
Romsaas et al14 and Richardson et al12
Cancer‘Assessment of problems relating to cancer and its treatment- in adult patients in outpatients clinics’Yes86 items, 15 domains
Information, fatigue, pain, nutrition-related, speech and language, breathing, bowel and bladder related, transportation, mobility, self-care and home care, vocational and educational related, interests and other activities, emotional, family related, interpersonal relationships and three open-ended questions.
Checklist for each item: single or multiple response selections (indicating prevalence of problem). Plus three open-ended questionsFurther studies needed to evaluate clinical useUnknown/absent
Palliative Care Assessment Tool (PACA), UK,
Ellershaw et al19 and Richardson et al12
‘Hospital inpatients with malignant disease (also, assessing the effectiveness of the multidisciplinary team)’‘Developed to assess the outcome of interventions, delivered by a hospital palliative care team’Administered by health professional12 items, 3 domains: ▸ Symptom control (pain, nausea, vomiting, constipation, anorexia, dyspnoea, immobility, insomnia)·  ▸ The insight of patients and relatives regarding the diagnosis·  ▸ Placement▸ Symptoms: four- point scale (0–3) ▸ Insight of patients and relatives: five-point scale (1–5) @ T1 and T2 (2 weeks)   ▸ Placement: four-point scale (1–4) The scales above are incorporated into a palliative care assessment (PACA) form that includes patient details, relevant medical and social histories, and interventions carried out by the teamPACA ‘easy to complete’, added to the evidence regarding the effectiveness of palliative care intervention in the hospital setting
Significant improvement in some symptoms following referrals: statistically significant improvements in pain (p<0.001), nausea (p<0.009), insomnia (p<0.004), anorexia (p<0.001) and constipation (p<0.02)
Staff; completion of symptom forms added significantly to the length of assessments
PACA could not easily be incorporated into standard clinical practice
Yes
Supportive Care Needs Survey (SCNS), long form (LF59) and short form (SF-34): Developed based on an existing Cancer Needs Questionnaire,
Australia,
Bonevski et al16 and Richardson et al12
Cancer‘To provide a direct and comprehensive assessment of the multidimensional impact of cancer (including assessment of health services and treatment and delivery) on the lives of cancer patients’Yes59 items, six domains: (a) psychologic (needs relating to emotions and coping); (b) health system and information: needs related to the treatment centre and for information about the disease, diagnosis, treatment, and follow-up; (c) physical and daily living needs; (d) patient care and support and (e) sexuality, plus additional itemsFive-point response scale:
No need
1. Not applicable
2. Satisfied
Some need
3. Low need
4. Moderate need for help
5. High need for help
Further studies needed to evaluate clinical useYes
Distress Management Tool, USA,
Richardson et al,12 and National Comprehensive Cancer Network (NCCN)18
Cancer‘Screening tool-rapid assessment—in cancer patients—made for the clinical setting’‘Simple verbal enquiry or patient self-report’36 items, five domains
Practical problems, family problems, emotional problems, spiritual/religious concerns, physical problems, plus one general distress item
One rating scale (distress thermometer 0–10) extreme distress to no distress, plus 33 statements (yes/no)Further studies needed to evaluate clinical useUnknown/absent
Symptoms and Concerns Checklist, UK,
Lidstone et al15 and Richardson et al12
Advanced cancer‘To determine prevalence and severity of symptoms and concerns in patients with advanced cancer (has been used in the outpatient setting as a supplement to clinical assessment)’Yes29-32 items, 4 domains cover
physical symptoms, cognitive/emotional/ psychological issues, information and communication, treatment related, self-care, social, family and relationships, finances, work and the future, spiritual and religious issues and other concerns plus one open-ended question
Rating scale: ‘how much of a problem’ (0–3) ‘Not at all, a little, quite a bit, very much’Further studies needed to evaluate clinical useYes
Initial Health Assessment Form (IHA), Canada,
Crooks et al20 and Richardson et al12
Patients with newly diagnosed cancer‘To aid clinicians in recognition and documentation of supportive care needs- of patients with newly diagnosed cancer during their first visit to a comprehensive cancer centre’
‘Made for: use as a multidisciplinary tool in the clinical setting. Used mostly by nurses’
Checklist prompts-facilitating discussion, plus space for management planUnclear, common supportive care needs in the following domains: physical (fatigue, pain, breathing, appetite, bowel), psychological (anxiety, depression, sleep disturbance, concentration, appearance), daily living (personal hygiene, managing home), social (caring for the family, concerns relating to others), financial, informational, other special needs and resources (someone to help with; physical needs, psychological needs, social needs, financial needs and spiritual needs)Checklist prompts (facilitating discussion), plus space for management planIntroduced in practice and evaluated
IHA Form intervention improved documentation of supportive care needs and resources but NOT documentation of the management plan. Currently being used in clinical practice
Unknown/absent
Problems and Needs in Palliative Care Instrument (PNPC), The Netherlands,
Osse et al13 and Richardson et al12
Advanced cancer‘A comprehensive checklist of the problems patients experience in palliative care, and their needs for care’Yes138 items, 13 domains
Quality-of-life aspects: Activities of daily living and instrumental activities of daily living, physical symptoms, role activities, financial and administrative issues, social issues, psychological issues, spiritual issues, autonomy, informational needs) Quality-of-care aspects: Problems in consultations, overriding problems in quality of care, concerning the GP, concerning the specialist
Two questions for each item
1. Is this (item) a problem? Yes—somewhat—No
2. Do you want (professional) attention for this (item)? Yes, more—As much as now—No
Informational needs questions (only addressed yes/no) Concerning the GP and concerning the specialist questions: Do you want his/her attention for this?: Yes, more—As much as now—No
Further studies needed to evaluate clinical useYes
Sheffield Profile for Assessment and Referral for Care (SPARC), UK,
Ahmedzai et al17
Advanced illness
It has found to be acceptable and relevant to patients with a wide range of diagnoses
‘A comprehensive, multidimensional and holistic self-assessment tool that provides a profile of needs to identify patients who could benefit from additional supportive or palliative care. It is designed to complement and not to replace the face-to-face clinical assessment by healthcare professionals. SPARC is intended to highlight need, in order to improve patient management, either by the current professional carers, or by referral to specialist supportive and palliative care services’YesSPARC is a patient-rated 45-item tool with nine dimensions of need, representing a comprehensive early holistic needs assessment
Domains in SPARC include
▸ Communication and information issues
▸ Physical symptoms
▸ Psychological issues
▸ Religious and spiritual issues
▸ Independence and activity
▸ Family and social issues
▸ Treatment issues
▸ Personal issues Plus one open-ended question
SPARC is designed to give a clinical profile and NOT a single index score. Each item is regarded on its own merit. Currently the authors do not recommend attaching any clinical significance to the total score or sum of scores in any category.
A sample of how some questions on SPARC are scored is presented below.
In the past month, have you been distressed or bothered by (symptom/issue/problem)?: Not at all—A little bit—Quite a bit,—Very much: 0, 1, 2, 3
Response formats:
Items: communication and information issues (yes/no), Not at all—a little bit—quite a bit—very much (0–3) for the following domains:
▸ Physical symptoms
▸ Psychological issues
▸ Religious and spiritual issues
▸ Independence and activity
▸ Family and social issues
▸ Treatment issues Personal issues (yes/no), plus one open-ended question about any other concerns
Study to assess clinical utility in progressYes
Needs at the End-of-Life Screening Tool (NEST),
USA,
Scandrett et al21 and Richardson et al12
Framework-based on patients’ experiences (subjective) and perspectives regarding their care at the end of life‘Screening tool—clinical setting, possibly assess impact of interventions’Can be administered by health professional (bedside assessment) or self-complete13 items, 10 dimensions
Financial burden, access to care, social connectedness, caregiving needs, psychological distress, spirituality/religiousness, personal acceptance, sense of purpose, patient clinician relationship, clinician communication, plus two additional items
Five-point Likert scale (strong agreement—strong disagreement) or discrete responsesThe use of NEST 13+ tool resulted in identification of a wide range of important needs vs traditional evaluation; however, care outcomes NOT improved (unchanged)
Uptake of recommendations from NEST 13+ intervention— described as poor
Clinical effectiveness—yet to be established
  • Assessment tools in supportive and palliative care (identified by Richardson et al12 and during our searches).