Introduction
Methods
Definitions
Eligibility criteria
Search strategy
Study selection
Data extraction
General characteristics of included instruments
Content analysis
Clinimetric properties
Methodological quality assessment
Quality criteria for the measurement properties
Feasibility and interpretability
Results
Search results
Study population for validation
Instrument characteristics
Instrument | Target population | Number of items | Mode of administration | Recall time | Time to complete (minutes) | Scoring | Response options |
---|---|---|---|---|---|---|---|
Palliative Needs Assessment in Palliative care (PNAP) [18] | Palliative - general | 40 | Not reported | Past week | 45 | Total and Individual items - Unmet need is important (importance: 4-5) and unmet (satisfaction: 1-2) | Importance of item: 5 point scale, 1 (not at all) to 5 (very much); Whether item has been met: 5 point scale, 1 (not at all) to 5 (yes, very much) |
Sheffield Profile for Assessment and Referral for Care (SPARC) [19] | Palliative - general | 46 | Interviewer-administered | Past month | 15 to 20 | Subscales and individual items | 4 point scale: not at all (= 0), a little bit (= 1), quite a bit (= 2), very much (= 3);Talk to/information about the following? Yes/No |
Needs Assessment for Advanced Cancer Patients (NA-ACP) [17] | Cancer - advanced | 132 | Self-administered | Past four months | 76 | Subscales | 5 point scale: no need, not applicable (= 0), no need, satisfied (= 0), low need (= 1), moderate need (= 2), high need (= 3) |
Needs Assessment for Advanced Lung Cancer Patients (NA-ALCP) [20] | Cancer - advanced (lung) | 38 | Self-administered | Not reported | Not reported | Subscales | 4 point scale: no need, low need, moderate need, and high need |
Problems and Needs in Palliative Care questionnaire (PNPC) [21] | Cancer - advanced | 138 | Self-administered | Not reported | Not reported | Subscales or individual items | Is this a problem?' 3 point scale: 'Yes', 'Somewhat', 'No'; 'Do you want professional attention for this?' 3 point scale: 'Yes, more', 'As much as now', 'No' |
Problems and Needs in Palliative Care questionnaire – short version (PNPC-sv) [22] | Cancer - advanced | 33 | Self-administered | Not reported | 10 | Individual items | Is this a problem?' 3 point scale: 'Yes', 'Somewhat', 'No'; 'Do you want professional attention for this?' 3 point scale: 'Yes, more', 'As much as now', 'No' |
Screen for Palliative and End-of-life care needs in the Emergency Department (SPEED) [23] | Cancer - advanced | 13 | Interviewer-administered | Not reported | Not reported | Individual items | 11 point scale from 0 (not at all) to 10 (a great deal) |
Three Levels of Needs Questionnaire (3LNQ) [24] | Cancer - advanced | 35 | Self-administered | Past week | Not reported | Subscales | Problem intensity & burden: 4 point scale: not at all (= 1), a little (= 2), quite a bit (= 3), very much (= 4); Felt need: have you received help (Yes/No); How adequate has this help been (inadequate/ partly inadequate/ adequate); Would you be interested in help (Yes/No) |
Name not given (Ndiok) [25] | Cancer - advanced | 104 | Interviewer-administered | Not reported | Not reported | Individual items | Yes/No |
Palliative Care Needs Assessment – English/ Arabic Versions (PCNA-EAV) [26] | Cancer - advanced | 116 | Interviewer-administered | Past 4 weeks | 40 | Subscales and individual items | Three 5 point scales, from: 1 (strongly disagree) to 5 (strongly agree), 1 (none of the time) to 5 (all of the time), 1 (extremely important) to 5 (not at all important) |
Cancer Needs Distress Inventory (CaNDI) [27] | Cancer - all stages | 39 | Self-administered | Past 2 weeks | 8 | Total and subscales | 5 point scale: not a problem (= 1), mild problem (= 2), moderate problem (= 3), severe problem (= 4), very severe problem (= 5);Follow-up question on whether would like to discuss concern with health professional - Yes/Prefer not to. |
Cancer - all stages | 59 | Interviewer-administered | Past month | Not reported | Total | 4 point scale: no need (= 0), low need (= 1), moderate need (= 2), high need (= 3) | |
Psychosocial Needs Inventory (PNI) [30] | Cancer - all stages | 48 | Self-administered | Past few weeks | Not reported | Subscales | How important' 5 point scale from 1 (not important) to 5 (very important);'How satisfied' 5 point scale from 1 (not satisfied) to 5 (very satisfied) |
electronic Health Needs Assessment (eHNA) [31] | Cancer - all stages | 48 | Self-administered (touchpad) | Not reported | 7 | Total and individual items | 11 point scale from 0 (no problem) to 10 (maximum concern) |
34-item Supportive Care Needs Survey (SCNS-SF34) [32] | Cancer - all stages | 34 | Self-administered | Past month | 10 | Subscales | 5 point scale: no need, not applicable (= 1), no need, satisfied (= 2), low need (= 3), moderate need (=4), high need (= 5) |
Cancer - all stages | 27 (26 + 1 open-ended) | Interviewer-administered | Past month | 15 | Total and subscales | Yes or no, then if answered yes, 4 point scale: satisfied with help received (=1); needed a little more help (=2); needed some more help (=3); needed a lot more help (=4) | |
Supportive Care Needs Survey – 9-item Screening Tool (SCNS-ST9) [35] | Cancer - all stages | 9 | Self-administered | Past month | Not reported | Individual items | 5 point scale: no need, not applicable (= 1), no need, satisfied (= 2), low need (= 3), moderate need (=4), high need (= 5) |
59-item Supportive Care Needs Survey (SCNS-LF59) [36] | Cancer - all stages | 59 | Self-administered | Past month | 20 | Subscales | 5 point scale: no need, not applicable (= 1), no need, satisfied (= 2), low need (= 3), moderate need (=4), high need (= 5) |
Cancer - all stages | 23 | Self-administered | Not reported | 5 | Subscales and individual items | Yes or No | |
Cancer Needs Questionnaire – short form (CNQ-sf) [40] | Cancer - all stages | 32 | Self-administered | Not reported | Not reported | Subscales | 5 point scale: no need, not applicable (= 1), no need, satisfied (= 2), low need for help (= 3), moderate need for help (=4), high need for help (= 5) |
Cancer - all stages | 25 | Self-administered | Today | 5 to 10 | Total and depression and anxiety scores | 5 point scale rating level of concern: not at all (=0), slightly (=1), moderately (=2), seriously (=3), very seriously (=4);Prompted with each item, "Please let us know how we can help you…" - select all that apply: Have a staff person talk with you; Connect you with online resources; Give you written information; or No action needed | |
Bladder Cancer Needs Assessment Survey (BCNAS-32) [43] | Cancer - all stages (bladder) | 32 | Self-administered | Not reported | Not reported | Subscales | 5 point scale from 1 (no need, not applicable) to 5 (high need). |
Cancer - all stages (prostate) | 69 (pt.1 39, pt.2 30) | Self-administered | Part 1: at time of diagnosis/ treatment decision; Part 2: Now | 30 | Individual items | 5 point scale from 1 (Strongly disagree) to 5 (Strongly agree) for extent of problem, and 5 point scale for level of help that would be/have been desirable: None at all, A little, Some, Quite a bit, A lot | |
You, Your family, and City of Hope are a team (YYFcore03) [46] | Cancer - all stages | 31 | Self-administered (touchpad) | Not reported | Not reported | Individual items | 7 point scale for extent of problem from 1 (Not a problem) to 5 (Very severe problem), Prefer not to answer and Do not know; If moderate, severe, or very severe problem, an in person follow up will occur. If any other response: "How can we best work with you on this problem?": Nothing needed at this time, Talk with a member of the team, Provide written information, Written information and talk with team member. |
Instrument development
Instrument | Item generation | Item reduction | ||||||||||||
---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
Literature | Review of content of existing instruments | Patient discussionsa | Expert panel | Conceptual model | Previous instrument | Health professional discussionsa | Other | Process of item reduction reported? | Factor analysisb | Item-response frequencies | Patient review | Expert review | Other | |
PNAP | + | + | + | Yes | + | + | ||||||||
SPARC | + | + | + | + | Yes | + | ||||||||
NA-ACP | + | + | + | Yes | + | |||||||||
NA-ALCP | + | + | Yes | + | + | + | ||||||||
PNPC | + | + | + | + | + | Yes | + | |||||||
PNPC-sv | + | Yes | + | |||||||||||
SPEED | + | + | + | No | ||||||||||
3LNQ | + | + | + | No | ||||||||||
Ndiok | + | + | No | |||||||||||
PCNA-EAV | + | + | + | + | No | |||||||||
CaNDI | + | + | + | + | Yes | + | + | |||||||
CNAT | + | + | Yes | + | + | |||||||||
PNI | + | + | No | |||||||||||
eHNA | No | |||||||||||||
SCNS-SF34 | + | Yes | + | + | ||||||||||
SCNAT-IP | + | + | + | Yes | + | + | + | |||||||
SCNS-ST9 | + | Yes | + | + | + | |||||||||
SCNS-LF59 | + | Yes | + | + | ||||||||||
NEQ | + | Yes | + | |||||||||||
CNQ-sf | + | Yes | + | |||||||||||
CSS-25 | + | Yes | + | + | + | |||||||||
BCNAS-32 | + | + | + | Yes | + | |||||||||
PCNQ V2 | + | Yes | + | |||||||||||
YYFcore03 | + | + | + | No |
Item generation
Item reduction
Instrument | Physical | Psychological | Information | Social | Activities of daily living | Health care | Spiritual | Sexual | Economic | Autonomy | Role | Other |
---|---|---|---|---|---|---|---|---|---|---|---|---|
PNAP | + | + | * | + | * | + | + | * | + | |||
SPARC | + | + | + | + | + | + | + | * | + | |||
NA-ACP | + | + | + | + | + | * | + | + | ||||
NA-ALCP | + | + | + | + | + | * | + | + | ||||
PNPC | + | + | + | + | + | + | + | * | + | + | + | |
PNPC-sv | + | + | + | + | + | + | * | + | + | |||
SPEED | + | + | + | * | + | |||||||
3LNQ | + | + | + | + | + | + | + | |||||
Ndiok | + | + | + | + | + | + | * | + | + | |||
PCNA-EAV | + | + | + | + | + | * | * | * | ||||
CaNDI | + | + | + | + | + | * | * | * | * | * | ||
CNAT | + | + | + | + | * | + | + | * | * | |||
PNI | * | + | + | + | + | + | + | * | * | * | * | Identity |
eHNA | + | + | + | + | + | + | + | * | + | |||
SCNS-SF34 | + | + | + | + | + | + | * | |||||
SCNAT-IP | + | + | + | + | + | + | * | * | ||||
SCNS-ST9 | + | + | + | + | + | * | ||||||
SCNS-LF59 | + | + | + | + | + | + | * | * | ||||
NEQ | * | + | + | + | + | + | + | + | ||||
CNQ-sf | + | + | + | + | + | * | * | |||||
CSS-25 | + | + | + | * | + | + | * | * | * | Body image;Lifestyle | ||
BCNAS-32 | + | * | + | + | + | + | Logistics | |||||
PCNQ V2c | + | + | * | + | + | + | ||||||
YYFcore03 | + | + | * | * | + | * | * | * | * |
Clinimetric properties
Methodological quality
Instrument | PROM development | Validity | Reliabilitya | |||||||||
---|---|---|---|---|---|---|---|---|---|---|---|---|
Content validity | Structural validity | Hypotheses testing | Internal consistency | Reliability | Measurement error | |||||||
M | M | M | Q | M | Q | M | Q | M | Q | M | Q | |
PNAP | Inadequate | Inadequate | Very good | + | Inadequate | + | Very good | ? | Adequate | ? | Inadequate | ? |
SPARC | Adequate | Adequate | Inadequate | ? | Inadequate | ? | Doubtful | ? | Inadequate | ? | Inadequate | ? |
NA-ACP | Doubtful | Doubtful | Inadequate | ? | Inadequate | ? | Very good | + | Adequate | + | Inadequate | ? |
NA-ALCP | Doubtful | Doubtful | Inadequate | ? | Inadequate | + | Very good | ? | Inadequate | ? | Inadequate | ? |
PNPC | Doubtful | Doubtful | Inadequate | ? | Inadequate | + | Very good | ? | Inadequate | ? | Inadequate | ? |
PNPC-sv | Inadequate | Doubtful | Inadequate | ? | Inadequate | + | Very good | ? | Inadequate | ? | Inadequate | ? |
SPEED | Inadequate | Inadequate | Inadequate | ? | Inadequate | ? | Very good | + | Inadequate | ? | Inadequate | ? |
3LNQ | Inadequate | Inadequate | Inadequate | ? | Inadequate | ? | Inadequate | ? | Inadequate | ? | Inadequate | ? |
Ndiok | Inadequate | Inadequate | Inadequate | ? | Inadequate | ? | Doubtful | ? | Inadequate | ? | Inadequate | ? |
PCNA-EAV | Inadequate | Inadequate | Inadequate | ? | Doubtful | + | Very good | ? | Doubtful | ? | Adequate | ? |
CaNDI | Inadequate | Doubtful | Inadequate | ? | Very good | + | Very good | ? | Adequate | + | Inadequate | ? |
CNAT | Doubtful | Adequate | Very good | + | Very good | + | Very good | + | Inadequate | ? | Inadequate | ? |
PNI | Inadequate | Inadequate | Inadequate | ? | Inadequate | ? | Very good | ? | Inadequate | ? | Inadequate | ? |
eHNA | Inadequate | Inadequate | Adequate | ? | Inadequate | ? | Very good | ? | Inadequate | ? | Inadequate | ? |
SCNS-SF34 | Doubtful | Doubtful | Very good | ? | Very good | + | Very good | + | Inadequate | ? | Inadequate | ? |
SCNAT-IP | Adequate | Inadequate | Adequate | ? | Very good | + | Very good | + | Inadequate | ? | Inadequate | ? |
SCNS-ST9 | Doubtful | Doubtful | Adequate | ? | Inadequate | ? | Inadequate | ? | Inadequate | ? | Inadequate | ? |
SCNS-LF59 | Doubtful | Doubtful | Adequate | ? | Inadequate | ? | Very good | + | Inadequate | ? | Inadequate | ? |
NEQ | Doubtful | Inadequate | Very good | + | Inadequate | ? | Very good | ? | Adequate | ? | Adequate | ? |
CNQ-sf | Doubtful | Doubtful | Adequate | ? | Very good | + | Very good | + | Inadequate | ? | Inadequate | ? |
CSS-25 | Doubtful | Doubtful | Very good | + | Very good | + | Very good | ? | Very good | + | Inadequate | ? |
BCNAS-32 | Inadequate | Inadequate | Inadequate | ? | Very good | + | Very good | + | Inadequate | ? | Inadequate | ? |
PCNQ V2 | Doubtful | Doubtful | Adequate | ? | Inadequate | + | Very good | + | Adequate | + | Inadequate | ? |
YYFcore03 | Inadequate | Inadequate | Very good | + | Inadequate | ? | Very good | ? | Adequate | + | Inadequate | ? |
GRADE levels of evidence
Instrument | PROM Development | Content Validity | Structural Validity | Hypotheses testing | Internal consistency | Reliability | Measurement error |
---|---|---|---|---|---|---|---|
PNAP | - | - | †† | - | †† | † | - |
SPARC | † | † | - | - | - | - | - |
NA-ACP | † | † | - | - | ††† | †† | - |
NA-ALCP | † | † | - | - | ††† | - | - |
PNPC | - | - | - | - | †† | - | - |
PNPC-sv | - | - | - | - | †† | - | - |
SPEED | - | - | - | - | † | - | - |
3LNQ | - | - | - | - | - | - | - |
Ndiok | - | - | - | - | † | - | - |
PCNA-EAV | - | - | - | - | †† | - | † |
CaNDI | - | - | - | †† | †† | † | - |
CNAT | - | † | †† | †† | †† | - | - |
PNI | - | - | - | - | †† | - | - |
eHNA | - | - | † | - | †† | - | - |
SCNS-SF34 | - | - | †† | †† | †† | - | - |
SCNAT-IP | † | - | † | †† | †† | - | - |
SCNS-ST9 | - | - | † | - | - | - | - |
SCNS-LF59 | - | - | † | - | †† | - | - |
NEQ | - | - | †† | - | †† | † | † |
CNQ-sf | - | - | † | †† | †† | - | - |
CSS-25 | - | - | †† | †† | †† | †† | - |
BCNAS-32 | - | - | - | †† | †† | - | - |
PCNQ V2 | - | - | † | - | †† | † | - |
YYFcore03 | - | - | †† | - | †† | † | - |