Assessing the needs of informal caregivers of patients with chronic non‐communicable diseases: A systematic review of self‐assessment tools

Abstract Aim To synthesize self‐administrated needs assessment tools of informal caregivers for patients with chronic non‐communicable diseases (CNCDs), evaluate the quality of psychometric properties and identify main needs assessment themes. Design Systematic review. Methods Eight electronic databases both in English and Chinese were searched for. The psychometric properties of tools were evaluated according to the quality criteria for good psychometric properties developed by Terwee et al. Both the content analysis and thematic extraction methods were used. Needs assessment themes were categorized based on the 7‐level Maslow's Hierarchy of Needs Theory. Results A total of 17 tools were synthesized. Thirteen of them targeted informal caregivers of patients with cancer. The psychometric properties evaluated for most of these tools were content validity, internal consistency and construct validity. A total of 27 needs themes were identified and matched to six levels based on the 7‐level Maslow's Hierarchy of Needs theory, besides the aesthetic needs level. No Patient or Public Contribution No primary data are being collected.

family members and society (Lefranc et al., 2017).For instance, in regard to their economic contribution, the estimated value of informal caregiving exceeds public expenditure on formal care and care allowances (Lefranc et al., 2017).However, studies have shown that informal caregivers also exerted great health costs (Lefranc et al., 2017;Petrovic & Gaggioli, 2020).Therefore, in 2018 'Research Priorities in Caregiving Summit' convened by the Family Caregiving Institute at the Betty Irene Moore School of Nursing at UC Davis (University of California, Davis) (1) called for increasing awareness of informal caregivers and conducting needs assessment of the changing needs of informal caregivers over the trajectory of caregiving for tailored support for them (Family Caregiving Institute, 2018).
Needs assessment allows individuals to indicate the extent to which their needs across different areas have or have not been met, allowing for estimations of the prevalence of needs and the extent to which help is required.And the self-assessment tools especially have the following advantages: not requiring in-person contact with a trained clinician, better reflecting what one's real thoughts, and requiring less time, expense and space than the objective-assessment (Newton et al., 2002).

| BACKG ROU N D
However, there was little synthesized information about how many instruments were developed for informal caregivers' needs (Lefranc et al., 2017), and what the most frequent needs themes assessed.Thus, a systematic review of the existing needs assessment tools of informal caregivers might be necessary to demonstrate overview of caregiver's needs.To date, there are some reviews (Lefranc et al., 2017;Mansfield et al., 2017;Prue et al., 2015) have reviewed studies of assessment tools for caregiver's needs and were published in 2015 and 2017 respectively.However, they only included English studies published until 2013 or 2016.Two of them (Mansfield et al., 2017;Prue et al., 2015) limited the target population to informal caregivers of people with dementia or cancer, thus they did not provide a bird's eye view of the informal caregiver's needs of patients with CNCDs.Another literature review (Lefranc et al., 2017) regarding eight self-administered needs assessment tools of informal caregivers, based on their title and content explanations that were provided in eight articles, and identified the seven most frequent categories of caregiver needs: Health and Care, Psychological-Emotional support, Information-Knowledge, Social Life-Work-Finance, Future-Bereavement-Spirituality, Instrumental Support-Respite and Satisfaction.But, this literature review only searched Medline database on September 2016.Therefore, the use of additional databases was suggested to find other selfadministered tools (Lefranc et al., 2017).Furthermore, standardized tools should be valid, reliable and acceptable to respondents (Keszei et al., 2010).Thus, to ensure that tools assessing the informal caregiver's needs of patients with CNCDs produce data that is accurate, and comprehensive, their psychometric properties should be investigated and evaluated.
Therefore, the aim of the review was to synthesize selfadministrated needs assessment tools for informal caregivers of patients with CNCDs, evaluate their psychometric properties and extract the main needs assessment themes based on the comprehensive and systematic search of Chinese and English databases.

| Research question
Specially, our research questions include: • How many self-assessment tools are developed for assessing informal caregivers' needs with CNCDs patients at present?And what are the characteristics of them (e.g.country, the number of items and domains, conceptual model and completion time)?
• How are the psychometric properties of these needs selfassessment tools?
• What need themes do these self-assessment tools incorporate?

| Design
A systematic review.

| Method
This review was guided by Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines (See File S1) and was registered with PROSPERO (CRD42022296584; https://www.crd.york.ac.uk/prosp ero/).[CBM]) and Open Grey.All the articles from inception to August 2021 were considered.Before formal retrieval, multiple pre searches were carried out in each database to determine the retrieval strategy.The used MeSH terms and keywords included Non communicable diseases, noncommunicable disease, caregivers, spouses, family caregivers, family members, needs assessment, unmet needs, comprehensive needs, professional needs, care needs, scale, tool, instrument and the forth.The Boolean operator 'OR' and 'AND' were used to distinguish synonyms and combine search terms.The full search strategy of this systematic review is listed in Appendix S1.

| Selection process
All identified citations were collated and uploaded into NoteExpress database and duplicates were removed.Then, titles, abstracts and full text were screened and assessed against the eligibility criteria for the review by two independent reviewers (YPP, MMZ).Any disagreements that arose between the reviewers at each stage of the study selection process were resolved through discussion or with a third reviewer (FYY).The results of the search were presented in a Preferred Reporting Items for Systematic Reviews and Metaanalyses (PRISMA) flow diagram (Moher et al., 2009).

| Data extraction
Two reviewers (YPP, GQY) independently completed data extraction by using a data extraction sheet.Data extraction mainly included: tool name, first author, year of publication, country of study, chronic diseases of focus, initial test population, conceptual model, the number of items and dimensions, time spent, assessment phases and psychometric properties.To ensure the comprehensiveness of needs themes, all included studies, regardless of their quality, were included in the synthesis.Any disagreements that arose between the reviewers were resolved through discussion, or with a third reviewer (FYY).

| Quality appraisal
The COSMIN checklist was meant for evaluating the methodological quality of a study on the measurement properties of a tool, not for evaluating the quality of the tool itself (Mokkink et al., 2010).To assess the quality of the tool, criteria for what good psychometric properties should be were previously published by members (Terwee et al., 2007) of this group (Mokkink et al., 2010).Considering this review focused on the tool itself, not the methodological quality of a study, thus, the psychometric properties quality of included tools was appraised according to the criteria developed by Terwee et al. (2007).This criterion included nine psychometric properties, each of which was rated as positive, intermediate, negative and no information respectively.The exact definitions of the psychometric properties and scoring criteria can be found in Table 1.Any disagreements that arose between the reviewers (YPP, DXB) were resolved through discussion, or with a third reviewer (FYY).

| Thematic extraction and clustering
The needs themes were extracted based on the method of qualitative content analysis: classifying large amounts of text into an efficient number of categories that represent similar meanings (Hsieh & Shannon, 2005).The items and domains of each tool were marked.Items with similarity in meaning from all included tools were put into the same pool.Each pool was named with a need theme and then were matched according to the definition of each level of 7-level Maslow's hierarchy of needs theory (Goble, 1970;Maslow, 1943): (1) Physiological needs are the most fundamental needs, namely, air, water, food, shelter and rest.(2) Safety needs include the contemporary issues of personal and financial security.(3) Friendly and intimate relationships with people in general and identifying with a particular group or groups are love and belonging needs.Love needs involve both giving and receiving love.
(4) Esteem needs, a need for a stable, firmly based, high evaluation of themselves, based upon real capacity, achievement and respect from others.(5) Cognitive needs are a desire to understand, to systematize, to organize to analyse and to look for relations and meanings.(6) The need for aesthetics is related to people's selfimage, and it helps people become healthier.(7) Self-actualization needs, the realization of one's full potential in realms such as athletics, poetry or science, et al, to realize personal meaning of life.
Reviewers (YPP, MMZ, FYY) resolved discrepancies in needs extraction and clustering through regular discussions.

| Ethics
Ethical approval is not required as no primary data are being collected.

| RE SULTS
Our search yielded 7594 results.All citations were collated and uploaded into the NoteExpress database and the 1272 duplicates were removed.Then, titles and abstracts of articles identified in the TA B L E 1 Quality criteria for psychometric properties of tools.

Property
Definition Quality criteria

Content validity
The extent to which the domain of interest is comprehensively sampled by the items in the questionnaire Positive: A clear description is provided of the measurement aim, the target population, the concepts that are being measured and the item selection AND target population and (investigators OR experts) were involved in item selection; Indeterminate: A clear description of above-mentioned aspects is lacking OR only target population involved OR doubtful design or method; Negative: No target population involvement; No information found on target population involvement.

Internal consistency
The extent to which items in a (sub)scale are intercorrelated, thus measuring the same construct Positive: Factor analyses performed on adequate sample size (7 * # items and > 100) AND Cronbach's alpha(s) calculated per dimension AND Cronbach's alpha(s) between 0.70 and 0.95; Indeterminate: No factor analysis OR doubtful design or method; Negative: Cronbach's alpha(s) <0.70 or >0.95, despite adequate design and method; No information found on internal consistency.

Construct validity
The extent to which scores on a particular questionnaire relate to other measures in a manner that is consistent with theoretically derived hypotheses concerning the concepts that are being measured Positive: Specific hypotheses were formulated AND at least 75% of the results are in accordance with these hypotheses; Indeterminate: Doubtful design or method (e.g.no hypotheses); Negative: Less than 75% of hypotheses were confirmed, despite adequate design and methods; No information found on construct validity.

Criterion validity
The extent to which scores on a particular questionnaire relate to a gold standard Positive: Convincing arguments that gold standard is "gold" AND correlation with gold standard >0.70;Indeterminate: No convincing arguments that gold standard is "gold" OR doubtful design or method; Negative: Correlation with gold standard <0.70, despite adequate design and method; No information found on criterion validity.

Reproducibility
Agreement: The extent to which the scores on repeated measures are close to each other (absolute measurement error) Positive: MIC < SDC OR MIC outside the LOA OR convincing arguments that agreement is acceptable; Indeterminate: Doubtful design or method OR (MIC not defined AND no convincing arguments that agreement is acceptable); Negative: MIC > SDC OR MIC equals or inside LOA, despite adequate design and method; No information found on criterion validity.

Reliability:
The extent to which patients can be distinguished from each other, despite measurement errors (relative measurement error) Positive: ICC or weighted Kappa >0.70; Indeterminate: Doubtful design or method (e.g.time interval not mentioned); Negative: ICC or weighted Kappa <0.70, despite adequate design and method; No information found on criterion validity.

Responsiveness
The ability of a questionnaire to detect clinically important changes over time Positive: SDC or SDC < MIC OR MIC outside the LOA OR RR >1.96 OR AUC≥0.70;Indeterminate: Doubtful design or method; Negative: SDC or SDC > MIC OR MIC equals or inside LOA OR RR <1.96 OR AUC <0.70, despite adequate design and methods; No information found on responsiveness.

Floor and ceiling effects
The number of respondents who achieved the lowest or highest possible score Positive: ≤15% of the respondents achieved the highest or lowest possible scores; Indeterminate: Doubtful design or method; Negative: > 15% of the respondents achieved the highest or lowest possible scores, despite adequate design and methods; No information found on interpretation.

Interpretability
The degree to which one can assign qualitative meaning to quantitative scores Positive: Mean and SD scores presented of at least four relevant subgroups of patients and MIC defined; Indeterminate: Doubtful design or method OR less than four subgroups OR no MIC defined; No information found on interpretation.
Note: Doubtful design or method = lacking of a clear description of the design or methods of the study, sample size smaller than 50 subjects (should be at least 50 in every (subgroup) analysis), or any important methodological weakness in the design or execution of the study.
| 7471 search were screened and 6166 articles were excluded because of no related to the research topic.Of the remaining 156 articles, 138 articles were excluded after a full-text evaluation according to the inclusion and exclusion criteria.Finally, a total of 18 articles with 17 needs assessment tools were included because the development of tool CaTCoN (Lund et al., 2012(Lund et al., , 2014) ) was reported in two articles from different aspects.Figure 1 shows the process of querying the database and of article selection.

| Quality appraisal results
The description of each tool' psychometric properties is presented in Table 2. Table 3 presented tool quality appraisal results.

| Characteristics of the tools
Seventeen tools from six countries were identified.They were published in Chinese or English from 1989 to 2021, covering four specific CNCDs types.All tools relied on Likert scale-type response devices.The completion time of the tools range from 5 to 30 min.
Detailed description of tools, such as the authors, countries, initial test population and completion time is provided in Table 4.

Needs level
Conceptual models show the logic, relationships among concepts (Casanave & Li, 2015), and using it can ensure the comprehensiveness and scientificity of the scale content.Generally, conceptual and theoretical models are used interchangeably (Casanave & Li, 2015).
Medical insurance (Yan, 2019a) and value recognition (Yan, 2019b) only appeared in one assessment tool respectively.
Based on Maslow's hierarchy of needs theory, the 27 needs themes were mapped to six levels (see  This review demonstrated that there had been a growth in tool development targeting 'caregivers' needs' since 2010.Of note, these tools were more often focused on informal caregivers for patients TA B L E 5 Themes distribution of needs assessment tools.

Categories of needs Needs themes
time based on the phases of patients' disease which ranged from 6 months to 60 months post-diagnosis (Campbell et al., 2009;Girgis et al., 2011;Hodgkinson et al., 2007;Junhua, 2021;Lund et al., 2014).According to the Swore Fletcher model, it highlights the disease trajectory as an important element, and the stress is likely to be experienced differently in different phases (Fletcher et al., 2012).
Therefore, the definition of the specific assessment phase based on the trajectory of different chronic diseases of patients is necessary in the tool development of informal caregivers' needs assessment.

| Quality appraisal
In this review, the overall quality of the included 17 tools were not too satisfactory, it still needs to be improved.The advantages are that the common psychometric properties were all evaluated in all or most of the tools, such as content validity, internal consistency and construct validity on the one hand; on the other hand, content validity which was considered as one of the most important measurement properties (Terwee et al., 2007), was rated as positive in more than half (59%) of the included tools.Although only 24% of the tools (Boele et al., 2019;Girgis et al., 2011;Hodgkinson et al., 2007;Yan, 2019b) had a positive rating in construct validity based on the criterion of more than 75% variance contribution rate, 50% variance contribution rate was also recommended by a Chinese expert (Minglong, 2010), which means more included tools would have the positive rating.However, the shortage is that some psychometric properties were less assessed in the included tools, such as the criterion validity, reproducibility (reliability and agreement), floor and ceiling effects, interpretability and responsiveness.Previous study (Terwee et al., 2007) has shown that discriminative questionnaires require a high level of reliability, and evaluative questionnaires require a level of agreement as well as responsiveness.Therefore, these above warrants researcher further attention and development in the future.

| Needs themes of the needs assessment tools
In our study, 27 needs themes extracted from the included tools were matched to six levels of Maslow's 7 hierarchy of needs, besides aesthetic needs.This means that the needs assessment scope of these tools is comparatively comprehensive.Especially the most frequent four needs themes (psychological-emotional, information, communication and healthcare professionals support) we extracted from the included tools were consistent with the unmet needs reported in the previous studies (Akgun-Citak et al., 2020;Hodson et al., 2019;Lee & Lee, 2020;Sarabia-Cobo et al., 2020;Wang et al., 2018).However, whether the aesthetic needs assessment was ignored by the previous studies or it was not cared about by informal caregivers needs further exploration.Besides, the self-realization needs level was found to have the largest number of needs themes, then followed by the level of love and belonging, which is different from previous reports, such as the knowledge need of patient' symptoms management and medicine administration (Akgun-Citak et al., 2020).This implies that the development of need assessment tools might facilitate caregivers or assessors to recognize the new unmet needs.What's more, according to Family System Theory (Keith, 1980), the needs satisfaction of both caregivers and patients must be taken into account in the same time in order to maintain a good care relationship.Thus, researches about informal caregivers' needs assessment and intervention in the context of good relationship setting are suggested.

| Limitations
We limited studies in English and Chinese, which might have missed some relevant tools in other languages.Another limitation is that we did not contact the study authors to identify the missing information on the tool's psychometric properties.

| CON CLUS I ON AND IMPLIC ATI ON S
In our systematic review, a total of 17 tools from six countries were developed to assess informal caregivers' needs of CNCDs patients.
Twenty-seven needs themes were extracted and were matched to Literature search was conducted in four English literature databases (PubMed, Cumulative Index to Nursing and Allied Health Literature [CINAHL], EMBase, Web of Science), four Chinese literature databases (Wan Fang Data, China National Knowledge Infrastructure [CNKI], Chongqing VIP [CQVIP], Chinese Biomedical Literature Database | 7469 YANG et al.

( 1 )
Study type: Original studies for the development of the needs self-assessment tool and published in peer-reviewed journals or in format of grey literature; (2) Population: Informal caregivers of patients with CNCDs; (3) Language: English or Chinese; (4) Outcome: Refer to the content and psychometric properties of the tool; (5) Accessible full texts.

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Characteristics of the tools5.1.1 | Target population of assessment tools six levels of Maslow's hierarchy of needs theory, besides aesthetics needs.Although the common psychometric properties, such as content validity, internal consistency and construct validity were considered in most tools, the overall quality of the included tools was not too satisfactory because of lacking of high percentage of positive rating indicators and other psychometric properties, such as reproducibility and responsiveness.All of the above might be helpful to the needs assessment tools choice of clinical nurse and provide further improvement prospects for tool developments, such as the comprehensiveness of needs assessment and the quality of psychometric properties.AUTH O R CO NTR I B UTI O N SYPP and FYY carried out contributions to the conception of the work.YPP, MMZ, GQY, DXB and FYY were involved in acquisition, analysis, interpretation of data for the work, drafting the manuscript or revising it critically for important intellectual content, final approval of the version to be published and agreement to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.
Characteristics of psychometric properties.
; Kim TA B L E 2 reported

Table 5 )
. The number of needs themes covered by the needs