Screening for distress in community settings

Abstract

Purpose

This project was designed to develop, refine and field-test a distress screening approach with survivors accessing community-based cancer support agencies.

Methods

The project was conducted in phases including a literature review and focus groups with cancer survivors and community agency staff. Data were gathered to lay the foundation for building a subsequent development and implementation of a new screening approach suitable for community-based cancer support agencies to use in identifying psychosocial distress in their clients.

Results

Standardized questionnaires used for distress screening approaches in clinical settings were not seen by cancer survivors as appropriate for community-based cancer support settings. A new screening approach was designed and implemented based on input from cancer survivors and staff in community-based agencies. The tool used in the distress screening approach focused on problems relevant to individuals in the community setting. If problems were identified, staff followed tailored care pathways to resolve them. Both patients and staff found the screening approach useful for quickly pinpointing problems and avenues for dealing with the issues.

Conclusions

Screening for distress approaches can be useful in a community-based cancer support setting to identify individuals who are at greater risk for experiencing difficulties. Data from screening can be useful for agencies to report on their service effectiveness.

INTRODUCTION AND BACKGROUND

Cancer and its treatment have more than a physical impact. There are emotional, psychosocial, spiritual, and practical consequences as well (Fitch et al., 2008). These consequences can engender distress for the individual and his or her family members, creating an unpleasant experience of an emotional, psychological, social, or spiritual nature that interferes with the ability to cope with cancer (Holland et al., 2015). The distress can extend along a continuum from common, normal feelings of vulnerability, sadness, and fears, to problems that are disabling (i.e., clinical depression, anxiety, panic, feelings of isolation and existential crisis). In addition, distress can arise at any point during the cancer journey.

This recognition has led to the development of programs to screen for emotional and symptom-related distress, the 6^th vital sign (Bultz et al., 2011). By identifying distress early, it is anticipated that interventions can be offered before the distress escalates and causes additional suffering for the individual. Screening involves the rapid identification of an individual’s key concerns and allows for further discussion, assessment, and appropriate intervention and/or referral (Fitch et al., 2012).

Screening for distress programs have been implemented primarily within clinical environments (e.g., ambulatory cancer clinics, inpatient hospital units) where individuals are undergoing diagnosis and treatment for cancer. However, the majority of individuals with cancer are in the community, at home with their families and coping with the day-to-day reality of living with the disease and its aftermath. To date, there has been little formal attention paid to screening for distress in the wider community setting (i.e., beyond the walls of the formal cancer centres) where patients and survivors are attending community-based cancer support agencies.

Community-based cancer support agencies developed to help cancer patients and their families with the myriad issues they face. These agencies operate with a person-centred philosophy and offer a home-like environment for those who come to the agency. It was anticipated by members of the advisory steering committee for this project that cancer community-based support agencies would find a screening for distress approach beneficial. It could facilitate the rapid identification of patient difficulties and assist in mobilizing a plan of action.

PURPOSE

The project was designed to develop, refine and field-test a distress screening approach with survivors accessing community-based cancer support agencies. The approach needed to be appropriate for the population attending the community cancer support agencies and feasible for the staff to implement. The approaches (i.e., tools and procedures) utilized in the cancer clinic/hospital settings might not be easily transferred to the community-based setting. For our purposes, we wanted to answer several key questions:

• How feasible was it to implement a screening for distress approach in a community-based setting?

• Did the implementation make a difference for patients or for the agency?

• What lessons could be learned regarding what worked well and what did not work well with a community-based approach to screening for distress?

• How sustainable was a program of screening for distress in a community-based setting?

METHODS

An advisory steering group, consisting of experts in supportive cancer care, distress screening, research and program evaluation, community cancer support, and cancer survivors, was established at the onset of the project. The project was organized in phases to achieve a series of objectives. Each phase is highlighted below.

1. Tool development and refinement: This phase began with a search of the literature to identify existing instruments that could be used as a standardized distress screening tool. A selection of several tools was presented to focus groups of cancer survivors and community agency staff (See Table 1 for criteria) with a decision made about a final tool (format and items) and approach (administration) based on the focus group feedback.

2. Care pathway development and refinement: This phase involved focus groups with cancer survivors and community agency staff members devising referral pathways for the various problems that would be identified using the newly developed distress screening tool. The care pathways had to be designed specifically for the local setting, as referral resources would be different in each locality.

3. Training materials and preparation: This phase involved the development of training materials for use with the community agency staff members and orientation sessions to help the staff know how to use the newly designed distress screening approach.

4. Pilot implementation of screening approach: This phase involved actual implementation of the newly designed approach to screen individuals who came to the community-based agencies as new members. This was treated as a pilot implementation and informed consent was sought from each individual who participated in the screening process. Ethical approval for the project was granted by the Sunnybrook Health Sciences Centre Research Ethics Committee.

Table 1.

Criteria applied to the selection of instruments to be used as a screening tool in community-based cancer support agency settings.

Criteria developed by the Advisory Steering Committee for the project—included experts in tool design, research, community supportive care, and screening for distress

Criteria topic	Question for review	Desirable characteristic for community setting
Length (number of questions) of time it takes to complete the tool	How long does the tool take to complete?	Short completion time
Expense	Does the tool (and scoring manual) need to be purchased or can it be reproduced with little cost or at no cost?	No cost; able to reproduce
Ease of use	How easy is the tool to complete; to score? How quickly can the scoring be done?	Easy to use; completed quickly and scored quickly (‘on the spot’; no complicated scoring required); scores easy to understand and interpret
Method of administration	Is the tool self-report or completed by an interviewer?	Prefer self-report by the cancer patients
Language	What is the language level of the tool?	Language level of the tool (6th grade)
Physical	Does the tool assess physical needs including pain, weakness, fatigue, nausea, vomiting	Should assess physical
Informational	Does the tool assess informational needs including cancer treatment and side effects procedures/test results, how to handle or manage side effects, care processes	Should assess informational
Social	Does the tool assess social needs including changes in roles, social relationships, interpersonal communications	Should assess social
Psychological	Does the tool assess psychological needs including changes in lifestyle, sexual problems, diminished cognitive ability, loss	Should assess psychological
Emotional	Does the tool assess emotional needs including fear, distress, anxiety, depression, anger, guilt, grief	Should assess emotional
Spiritual	Does the tool assess spiritual needs including practice religious beliefs, search for meaning, existential despair	Should assess spiritual
Practical	Does the tool assess practical needs including daily home help, shopping, transportation, child care, prosthesis, financial issues, legal issues	Should assess practical
Psychometrics	Are the psychometrics of the tool reported including – reliability (consistency of the measure); validity (measuring what its claiming to measure), and sensitivity (able to detect the relevant problem/issue/behavior)	Tool should be reliable, valid for cancer survivor population; sensitive for their issues

Implementation of Phases and Results

Tool development and refinement

The literature search led to the identification of 34 existing tools that could potentially be used as screening instruments to identify distress in cancer survivors attending a community cancer support agency. Criteria (see Table 1) were applied to each tool by the project team and advisory group members to select the best ones for potential use. Each team and advisory group member reviewed the tools against the criteria independently and then discussed their assessments together. Based on consensus, five tools were selected for further review in focus groups: Edmonton Symptom Assessment System (ESAS) with the Canadian Problem Checklist (CPAC, 2012), Supportive Care Screening Tool (Steele & Fitch, 2008), Patient self-Assessment Questionnaire (CAPO, 2020), Psychological Screen for Cancer (PSSCAN) (Linden et al., 2009), and the Personal Well-being Checklist (Cancer Control Alberta, 2020). The five tools were presented for further review and selection to cancer survivors and community-based agency staff members who agreed to participate in the project.

Focus groups were organized at each of the partner organizations: Gilda’s Toronto, Gilda’s Muskoka, and Maplesoft Ottawa. More than 50 cancer survivors, volunteers, and agency staff attended. The sessions were facilitated by the project team members and explored several aspects with the participants: their understanding of distress and distress screening, their expectations for attending a community-based cancer support agency, and their perspectives on the five potential screening tools (i.e., clarity of the instructions and items, comfort completing the tool items, and relevance of the items to them).

The survivor participants were not entirely familiar with the use of the term ‘distress’. They were familiar with using the word ‘stress’ on an everyday basis, but saw ‘distress’ as reflecting something more clinical. Additionally, cancer survivors in the focus groups perceived screening for distress, and especially using a pen and paper format, as ‘too clinical’ for a community setting. For many, they came to the community setting because of its ‘home-like’ atmosphere and were comfortable with the way the staff interacted with them. The idea of having a formal assessment process was perceived as relevant for a cancer clinic, but not appropriate in the community setting.

Survivors indicated that if any type of assessment were to happen, they would have to be informed clearly about its purpose and the approach would have to be administered within a conversational atmosphere. Additionally, if the community agency were to implement such an approach, it would have to be prepared to help the survivor address the issues that were identified either directly or through referral. It would not be acceptable to identify issues and then have no follow-up action to help the survivors. Agency staff felt the distress screening process could be useful for developing an evaluation database for their work, validating their programs to their Board of Directors and donors, and identifying gaps in what they were offering to patients and families.

In the final analysis, none of the five tools presented to the group was thought to be entirely helpful for the community setting either because of their format or the selection of items. Hence a new tool needed to be designed based on the cancer survivors’ feedback about the items they saw as relevant and could be handled within the community setting. The tool has 18 items and is designed to be administered during a conversation with the individual (Figure 1). The items do not have to be covered in a specific order, but in accordance with what the individual wishes to discuss. The tool is presented on a postcard, which the individual can also keep, with the relevant items listed on the front and the questions for discussion on the back (see Figures 2–3). The staff member uses the documentation sheet as a guide during the conversation and a record of what the individual reported.

Figure 1.

Newly designed screening tool to be used by the community agency staff member/volunteer to record concerns from clients uncovered during the initial intake conversation

Figure 2.

Front of poster card presented to individual attending community-based agency; for use during the conversation and for client to take home

Figure 3.

Back of the postcard presented to individual attending the community-based cancer support agency; to be used during a conversation and for client to take home

Care pathway development and refinement

Once the final items had been selected for the new tool, another set of focus groups with cancer survivors and agency staff was held to discuss the care pathways for each potential problem on the list. During these focus groups, the process of screening for distress was presented, including the idea there could be levels of concern (e.g., mild, moderate, high) about problems. Based on the level of concern, different approaches would be utilized for intervention (See Figure 4).

Figure 4.

Algorithm for action based on scores from individual (indicates level of concern expressed)

Participants then mapped out what they saw as appropriate actions for each potential problem based on the available resources in their local community (see Figure 5). These maps would be utilized by the staff in their discussions with individuals and a mutually agreed upon plan of action could be crafted. An example of the plan of action can be seen in Figure 6. This document could be both given to the individual as well as kept on file at the agency.

Figure 5.

Example of a care pathway for dealing with emotional issues as devised by the participants in the focus group (Note: similar pathway developed for each of the issues listed on the postcard)

Figure 6.

Example of care plan to be discussed by the individual and community agency staff member/volunteer

Training and orientation of staff

Prior to launching a pilot of the new distress screening approach, the six staff of the community-based agency were trained in the use of the new tool and the care pathways. This consisted of a five-hour workshop in which information about distress in cancer, screening for distress, and the screening approach for community agencies was shared. Participants had the opportunity to role play interactions using the new tool. All reported this was a helpful step prior to beginning to use the tool in their conversations with individuals.

Pilot implementation of new distress screening approach

A three-month pilot implementation was run at the community support agencies to trial the new screening approach. It was agreed that the approach would be used with new individuals who came to the support agency, as part of the initial intake conversation. The postcard would be given to the individual and the actual screening documentation tool would be completed by the staff/volunteer member.

In total, 17 individuals were screened using the new tool from the three sites during the pilot. As an example, in one site, there were 91 individuals who were new attendees during the three-month interval at the community agency, but 54 did not meet the criteria to be presented with the screening approach (i.e., 44 were family members, 10 were in extreme distress); 33 declined because they were ‘too busy’, ‘too tired’ or ‘not interested’; and four were screened. It was also noted that many attendees at the support centre were either patients or family members where a diagnosis of cancer had been made recently and/or the patient was on treatment.

Of the 17 who were screened for distress using the new tool, 94% were female, 53% were married, and 59% had graduate level education. On average they were 53.5 years of age (range = 41–65). All expressed experiencing concerns about at least one problem on the list and many had more than one. In some instances, the concern was of a moderate to high level. Individuals expressed varying levels of concern about problems they were experiencing, but not all of them expressed the desire for help. Several who had not experienced a concern expressed the desire for help. Table 2 presents the frequency of endorsement for each problem item.

Table 2.

Screening for concerns at community-based support agencies (N = 17): Pilot results

Problem list	Total number of individuals who indicated having a concern	Number who Indicated a high level of concern	Number who Indicated a moderate level of concern	Number who requested help with the concern
Dealing with emotions	13	2	9	10
Worry	11	3	5	8
Financial concerns	10	3	5	4
Nutritional information	9	5	2	9
Disease information	9	0	7	-
Fatigue	9	3	5	6
Weight change	9	2	4	7
Dealing with body image	9	2	4	4
Information about side effects	8	1	3	3
Information about different resources available	7	3	2	4
Pain	7	3	2	4
Sexuality	6	1	2	3
Having no one to talk to about your feelings	6	1	4	-
Sadness	6	0	2	3
Managing at home	5	4	3	2
Legal concerns	4	1	1	2
Feeling hopeless	4	0	1	2
Dealing with spiritual issues	3	0	2	-

DISCUSSION: FOCUSED ON LESSONS LEARNED

The project provided an excellent opportunity to explore the notion of screening for distress (6^th vital sign) in a community setting. We learned that some of the approaches used in the clinical setting of the cancer centres were not acceptable in the community support agency setting. The look and feel of a standardized tool for screening that would be used in a clinic setting was not seen as a ‘friendly’ approach when the community agency wanted the setting to ‘feel like home’. What was supported and seen as acceptable in the community setting was having the screening items covered during a conversation and having the agency staff/volunteer member complete any documentation records. The postcards were well received by the individuals who engaged in the screening process, as the information on the cards helped them to understand what they might be experiencing. Staff/volunteers also described the initial use of the screening approach took some time to learn, to become comfortable in using, and to incorporate into their routine practice.

The idea of mapping out the available services for each type of problem was viewed as very helpful for the staff/volunteers of the community support agencies. The care pathway tool was easy to follow and provided a quick reference for suggesting approaches to follow-up for the various issues that could arise. The actual exercise of developing the care pathways also provided an opportunity for the agency to see where there might be gaps in the resources they could use and where new resources needed to be created.

What did not work well from the perspective of the staff/ volunteers was the research consent procedure. Given the context of the project, an informed consent process was necessary, but the community agency staff/volunteers found the process interrupted the flow of their conversation with the new member and felt cumbersome. They perceived the informed consent process resulted in individuals declining to participate in the screening project. They also found it difficult to leave family members out of the screening process and thought a similar screening maneuver needed to be developed for use with family members in the future.

Follow-up with the individuals who were screened during the pilot was viewed as an important step, but was not possible within the timeframes of the project. Implementation of the actual screening was later than expected and delayed the ability to complete a follow-up within the project timelines. However, all partners expressed commitment to engage in follow-up and wanted to incorporate the screening process into their regular intake procedure. They saw the process as helpful in identifying individuals at higher risk and helping to connect those individuals with appropriate resources. They also saw a role for using the data created from the screening process in reports to their Boards of Directors to describe the needs of the clients who were coming to the program and the services provided to them.

Future adaptations for other tools were recommended. In addition to developing a tool for use with family members, it was recommended that a tool be designed for use during telephone conversations. Additionally, two new items were thought to be important to include: return to work, and support of children and adolescents.

CONCLUSION

The design and pilot implementation of a process to screen for distress (6^th vital sign) in community-based agencies supporting cancer patients/survivors and their families was viewed a valuable step by the agency staff/volunteers. The process had to be imbedded within a conversation with the client and feel like a natural part of the intake process of new members for the agency. The screening items covered during the conversation had to be ones that were of concern to this population and ones where a pathway for resolution could be established by the community-based agency. The pathway had to specify which issues would be handled by the agency staff and which ones would need to be referred to healthcare staff at the cancer centres or other organizations. Members who attended these community-based cancer support agencies wanted help beyond what they considered ‘clinical’ issues.