Assessments used to measure participation in life activities in individuals with cancer: a scoping review

Individuals with cancer are at high risk for restricted participation in meaningful life activities such as work, school, and social activities. Evaluating participation in life activities is identified as a critical component of rehabilitation referral and triage systems. This scoping review investigates what assessments are used to measure participation in life activities in individuals with cancer. Six databases were systematically searched using keywords and controlled vocabulary through February 2020. Eligible studies used the term participation in the context of life situations and had an assessment with at least 5 participation-specific questions. A total of 4604 unique articles were identified and screened for eligibility. Thirty-two studies were included; 20 unique assessments of participation were identified. Assessments were developed with the primary purpose of measuring participation (n = 8); global or physical function (n = 9); community integration (n = 1); social activity (n = 1); or occupational gaps (n = 1). Most assessments (12/20) were not developed with the purpose of measuring participation and only 4 assessments measured key components of participation other than frequency. Measuring participation in life activities is a developing area in oncology research. Most studies do not accurately or comprehensively measure this construct. The heterogeneity in assessments used indicates no clear consensus on a gold-standard participation measure for use among cancer survivors. Comprehensively measuring participation will help identify individuals in need of rehabilitation services and is an essential first step to inform the development of targeted interventions to enhance participation.


Background
Approximately 38% of individuals in the USA will be diagnosed with cancer during their lifetime [1]. Medical advances have improved survival trends from 1999 to 2016 for men and women with the majority of the most common cancer diagnoses [2]. While survival rates vary widely depending on cancer type, 67% of individuals with cancer survive 5 or more years after diagnosis [1].
Individuals with cancer typically undergo an assortment of intensive medical treatments such as surgery, chemotherapy, and radiation therapy in an effort to eradicate the disease. The side effects of treatment are multifaceted and impact a variety of domains such as physical, cognitive, and psychosocial functioning [3]. However, little is known about how such widespread and diverse challenges interplay to impact participation in life activities in individuals with cancer.
The International Classification of Functioning, Disability and Health (ICF) identified participation restrictions as one of the key components by which disability should be classified [4]. Participation was defined by the ICF as involvement in a life situation [4]. More recent definitions of participation refer to a person's satisfaction with and ability to fulfill social roles within the home, community, and society [5,6]. Given the many side effects of cancer treatment and the challenges Electronic supplementary material The online version of this article (https://doi.org/10.1007/s00520-020-05441-w) contains supplementary material, which is available to authorized users. survivors face gaining or returning to employment [7], engaging in basic (e.g., dressing, showering) and instrumental (e.g., housework, shopping) activities of daily living [8], and the cost of treatment [9], evaluating participation is critical.
Conceptually, there are both objective and subjective dimensions of participation [6]. Objectively, one can describe the frequency of various role-relevant activities and the settings in which they occur [6,10]. Subjectively, an individual's satisfaction, desire for change, perceived difficulty, and importance of participation in specific activities can be described [10,11]. Because there is no standard for what is considered better or worse participation, personal preferences have an important role in the measurement of participation [5]. The ultimate goal of measuring this construct is to assess if an individual can do the things that are meaningful to them, to the extent they wish, and in a way that is satisfactory to them.
There has been a call to action for the promotion of strategies that facilitate return to work, school, and life for survivors of cancer [12], which are among the core domains of participation. Qualitative and survey data demonstrate that survivors want to engage in typical life activities, such as work and school [13]. These activities are a natural part of daily life, help establish a sense of normalcy, provide opportunities for socialization, and promote feelings of accomplishment [13]. Being unable to participate in meaningful activities leads some to feel as if they have lost part of their identity [13]. To better understand how participation is impacted in survivors, we must consistently include measures of participation into functional assessments of individuals with cancer from the point of diagnosis through end of life care [14]. With the push to integrate this concept into the continuum of cancer care [14,15], understanding how participation is currently measured in this population is essential.
While two systematic reviews of participation measures [10,11] have focused on broader populations, narrowing the focus to cancer survivors can identify assessments that are unique to this population and highlight gaps in oncology measurement practices. As the field of participation measurement continues to advance, there is an opportunity to identify additional participation measures that did not exist when the previous reviews were published.
Scoping reviews are conducted to investigate the extent of available literature on broad topics, emerging evidence, and research concepts evaluated and discussed with high variability [16][17][18]. Participation is an emerging concept within the field of oncology, and we sought to examine how and to what extent participation is measured in cancer survivors. Because of the broad research question and emerging evidence base, a scoping review is recommended to explore participation in this population [17]. The objective of this review was to determine what assessment tools are currently used to evaluate participation in life activities in individuals with cancer. For the purpose of this study, we referred to Chang and Coster's (2014) definition of participation as active involvement in activities that are intrinsically social and occur in a societally defined context [6].

Methods
The methods for conducting systematic scoping reviews recommended by the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) guidelines were used in this study [16].

Protocol
The study protocol was developed based on the PRISMA-P guideline for protocols. The study protocol is available on request from the corresponding author.

Eligibility criteria
Inclusion and exclusion criteria were established prior to database searches. Studies were eligible for inclusion if they (1) used the term "participation" or "participate" in the context of involvement in a life situation; (2) included individuals with cancer (any type of cancer, age, phase of treatment, or survivorship); (3) defined a specific assessment as a measure of participation and/or if the assessment contained at least 5 questions pertaining to participation; (4) reported results or conclusions about participation based on assessment results; (5) were published in any year or language; and (6) were peerreviewed articles, dissertations, or book chapters.
Studies were excluded if (1) participation was not discussed in the context of a life situation; (2) participation was discussed in the context of life situations, but the focus was too narrow (e.g., only physical activity participation); (3) the term participation was only used in an assessment domain title or within an assessment item; (4) no results or conclusions were provided related to participation; (5) the population did not include individuals with cancer; (6) participants were a duplicate cohort represented in separate publications; (7) the assessment used was a questionnaire or survey developed only for the specific study; (8) the assessment used had fewer than 5 questions pertaining to participation; (9) findings were qualitative as the focus of this study was to identify and describe specific assessments used; and (10) only conference abstracts were available as this did not allow us to gain enough in-depth information on the study.

Information sources
Search strategies were generated by a medical librarian (L.S.) to locate published literature on the measurement of participation among individuals with cancer. A combination of keywords and controlled vocabulary were used to search the following databases: Ovid Medline, Embase, Scopus, Cochrane Database of Systematic Reviews (CDSR), and Database of Abstracts of Reviews of Effects (DARE). Additionally, instrumentation fields were used to search in EBSCOhost PsycINFO and EBSCOhost PSYCtests.
During the project planning phase, we identified three articles [10,11,19] that conducted similar studies synthesizing and evaluating tools used to measure participation. However, these studies did not focus on the use of these tools in individuals with cancer. Therefore, we conducted an additional search in each of the databases to find literature mentioning the assessments listed in these three review articles with individuals with cancer. Reference and citation information for each of the non-cancer measurement tool studies was created using the Scopus database.
All databases were searched from their inception through February 2020. Retrieved records for each of the three searches were exported into separate EndNote libraries. Duplicate records were removed by the medical librarian following specific de-duplication methodology [20].

Search
Fully reproducible search strategies for each database and search are available in Online Resource 1.

Selection of sources of evidence
Titles and abstracts were screened by a single reviewer. Articles identified as needing full-text review were independently screened by two reviewers to determine if they met eligibility criteria. Discrepancies in studies identified for inclusion or in data charting (discussed below) were resolved through discussion and consultation with a third reviewer.
To establish consistent screening guidelines, a list of study inclusion criteria was created with specific examples provided for more abstract components (e.g., the context in which participation was discussed). The list was tested by a single reviewer for 50 full-text articles. Modifications were made for improved clarity and a decision tree was created. The decision tree was used to guide reviewers in identifying articles to include in the study. The two reviewers trialed use of the decision tree for article inclusion with 15 articles and had 100% agreement.

Data charting process
A data charting form was developed in Microsoft Excel specific to the needs of this study. The form was pilot-tested by a single reviewer on 20 full-text articles. Modifications were made to include more specific questions about how participation was discussed in the article, the number of participation-specific questions in the assessment, and number of study participants, and to include more detailed descriptive terms on how to chart information. A second pilot test was performed with both reviewers on the modified form with five articles. Neither reviewer identified a need for additional modifications to the form. The two reviewers independently charted data from all included studies and compared results.

Data items
Data were charted on article (title, year, and first author) and participant characteristics (sample size, specific cancer population, and age), how participation was discussed (the definition (if provided), where participation was discussed in the article, and what participation conclusions were made), the study's primary objective, and information on the assessment used (name, how the study characterized the purpose of the measure, and methods for measuring participation).

Critical appraisal of individual sources of evidence
Because scoping reviews provide a broader overview of the evidence, they do not typically assess studies for quality [16]. This is an optional item in the PRISMA-ScR guidelines and was not completed for this study.

Synthesis of results
Summary statistics were generated for assessment and study characteristics. A bubble plot was created to represent the frequency of assessment use over time. Original articles describing the development of each of the assessments included in the review were identified and reviewed to understand the intended purpose of each assessment. A summary chart of assessment characteristics was created. A summary table of studies included in the review is provided in Online Resource 2.

Results
The search yielded 4604 unique articles. After initial screening, 576 full-text articles were assessed for eligibility, 32 of which were included in this review. The majority of full-text articles determined to be ineligible for the review did not discuss participation (n = 290). Other excluded articles discussed participation, but in a context different from involvement in life situations, such as exclusively measuring participation in physical activity, examining participation in cancer screening programs, or participation in decision-making in medical care (n = 65). Articles were also excluded if participation was discussed briefly, but there were no measures (n = 71) or results and conclusions (n = 55) pertaining to participation. Details on study selection are described in Fig. 1.
While one study was published in 2000, all other studies were published between 2006 and 2020. Time trends, frequency of assessment use, and sample size are illustrated in Fig. 2.
In the 32 included studies, 20 different assessments were used to measure or draw conclusions about participation. The Patient-Reported Outcomes Measurement Information System (PROMIS) battery was most frequently used (6 of 32 studies, all published in the last 6 years). The Reintegration to Normal Living Index (RNL) was used in 3 studies across a wider timespan, from 2006 to 2014. All other assessments were used in only 1-2 studies. Only 4 of the 20 assessments included questions that asked about the meaning, satisfaction, or value of participation, which are key components to evaluate when measuring participation [5].
Seventy-eight percent of studies characterized the identified assessment as a measure of participation. However, after reviewing the intended purpose of the assessment when it was developed, only 28% of studies used a tool that was developed with the primary purpose of measuring participation. For example, the RNL was described in all 3 studies as a measure of participation, but the assessment was developed with the purpose of measuring global function status, a distinct and separate construct from participation.
Differences in sample size were apparent when comparing studies that used one of the eight assessments developed with the purpose of measuring participation versus those that were not developed for that purpose. Sample size ranged from 8 to 192 participants (median, 30; interquartile range [IQR], 19.5-128.5) for studies using a participation measure. Studies that used more general assessments not specific to participation ranged from 17 to more than 5000 participants (median, 102; IQR, . Fifty percent of studies were conducted outside of the USA, with a total of 13 different countries represented in this review. Three studies [25,30,34] focused on participation in children; all other studies included only adults. Breast cancer was the most frequently studied group as the population of interest in 31% (n = 10) of studies. Study and assessment summary characteristics are further described in Table 1.
Assessments demonstrated high variability in domains measured (0-12), methods for administration, and number of items (between 5 and 240). Detailed information about assessment properties are provided in Table 2.

Summary of evidence
In this scoping review, 32 studies were identified that used 20 different assessments to measure, describe, and draw Based on the findings of this review, there is not strong evidence to draw conclusions about an ideal measure of participation for individuals with cancer. Comprehensive tools developed with the primary purpose of measuring participation that also provide objective and subjective evaluation of the concept should be used when possible. Only 4 (LIFE-H, LIFE-H for children, ICPAS, and MAPA) of the 8 assessments developed to measure participation had questions that asked about the value, satisfaction, or meaning of participation, which are essential components of comprehensive participation assessments [5]. Of the assessments identified in this review, these 4 would provide the most comprehensive evaluation of the construct. There are additional comprehensive measures of participation (e.g., the Participation Measure-3 domains, 4 dimensions [73]), however, that have not yet been used with cancer survivors. With the goal of incorporating participation measurement into routine care to inform rehabilitation referral and triage systems [14], the clinical utility of assessments needs to be appraised.
While the use of comprehensive participation measures is recommended, these measures tend to be more time consuming to complete. Assessments focusing on different (e.g., quality of life) or multiple (e.g., in a global health assessment) White bubbles denote assessments used in only one study. CPIB, communicative participation item bank; SF, short form; all other abbreviations are listed in  Cancer survivors in Turkey [32] ICPAS f [33] Participation of children in Iranian context 8 sub-categories: ADL, IADL, play, leisure, social participation, work, education, and sleep/rest.

71
Child and parent-report assessments. Frequency of activities, with whom the activity was done, how enjoyable it is for the child to do the activity, and how much the parent is satisfied (parent-report version only).
Children with various types of cancer undergoing chemotherapy [34] MAPA g [35] Degree of meaning through participation in activities N/A 28 Frequency of participation (in the last few months) and degree of personal meaningfulness experienced with each activity (0 = not at all meaningful to 4 = extremely meaningful).

29
Scored on visual analog scale from 0 (very well) to 100 (not at all). Asked how well a person is able to perform or participate in various activities.
Receive domain score and sum score. Asked how well they are able to perform activities Breast cancer related upper limb lymphedema [40] PIPP k [41] Impact and distress of health conditions from the individuals' perspective 5 subscales: self-care, mobility, participation, relationships, psychological well-being. 23 6-point scale; asked about the amount of impact current health problems had on function (no impact to extreme impact) and how much distress has been caused by the impact of their health problem on function (no distress to extreme distress) Breast cancer [42] and brain tumor survivors [43] PROMIS l [44] Global health focusing on physical, mental, and social components  [45], early-stage breast [46], breast [47], nonmetastatic sarcomas [48], adults [49] and young adults [50]   Two subscales: daily functioning and perception of self.
Self-or interviewer-administered. Scored on visual analog scale. 1 = minimal integration, 10 = complete reintegration Extremity soft tissue sarcoma [60,61] and primary bone tumor of lower extremity [62] WSAS q [63] Functional impairment constructs contain fewer questions pertaining to participation and can be administered more rapidly, but the results of such assessments should be cautiously interpreted. One of the most widely cited publications describing participation in cancer survivors [74] drew conclusions about participation based on 7 questions, several of which asked about activity level impairments (e.g., difficulty using fork, knife, cup; difficulty dressing) and did not truly investigate the concept of participation. Results from general assessments can provide an overview of participation, but conclusions should not be made about participation because the items provide only a limited evaluation of this complex construct [75]. Although the PROMIS battery was the most frequently used assessment, there is emerging evidence that PROMIS participation short forms may lack sensitivity to identify impairments in participation detected by comprehensive participation measures [76]. A potential for low sensitivity to detect impairments calls into question whether PROMIS is an adequate screening tool to identify participation restrictions.
The importance of measuring participation among cancer survivors is recognized globally. The field must work towards consistently measuring, interpreting, and making conclusions about participation restrictions from comprehensive and clinically useful participation measures. Future research should also focus on understanding what participation assessments are most relevant to survivors and if available participation measures meet the unique needs of this population. Our team is initiating a prospective study to understand survivors' perspectives of participation and participation assessments. Information learned from survivors will inform the selection of a comprehensive participation measure to evaluate participation over time. Comprehensively measuring participation can help researchers and healthcare providers gain a greater understanding of what is truly important to each individual with cancer. Surviving cancer is a massive feat; incorporating the concept of participation into oncology care can help survivors live a fulfilling and meaningful life during and after cancer and identify methods to reduce the societal cost of cancer.

Limitations
The specificity of our research question led to several potential limitations. Because we aimed to understand what assessment tools were used to measure participation in individuals with cancer, we excluded studies that described participation qualitatively or used surveys developed only for the purpose of their study. Additionally, review articles and position papers recommending assessments for use were excluded as these assessments had not yet been used with individuals with cancer. These strict eligibility criteria were necessary to appropriately answer our research question.
The abstract nature of participation was another potential limitation as this made it difficult to determine what assessments measured participation comprehensively. In an effort to move away from assessments that ask a very limited number of questions about participation, a cutoff of at least 5 participation-specific questions was selected. This was done a priori to determine study eligibility. While 5 questions specific to participation still does not represent a comprehensive measure of participation, this approach was taken to be as inclusive as possible while still eliminating assessments with very few questions pertaining to participation. A cutoff of 10 participationspecific questions was deemed too high based on findings from a prior systematic review [11] which identified numerous participation assessments with less than 10 total items. With this approach, we can begin to move away from the recommendation and use of measures that ask few questions specific to participation and begin to critically evaluate what needs to be included in more comprehensive measures of participation. Measuring participation is a challenge in the field of rehabilitation overall, not just in the area of oncology. As this is the current state of the science, we sought to describe what assessments are currently used and identified areas for future research in the field.

Conclusions
Understanding survivors' participation in activities that are meaningful to them is crucial to improving their daily experiences. More work is needed to identify clinically relevant measurement tools that capture changes in these important life activities. Participation has a widespread impact on individuals' lives and needs to be comprehensively measured and included in outcome assessments of cancer survivors throughout the continuum of care.