Abstract
Caregivers experience physical, psychological, emotional, and practical challenges resulting from their roles and responsibilities. These challenges negatively impact caregivers’ health and well-being. Screening for patient-reported outcomes (PROs) is now considered a cornerstone of chronic disease management to improve symptom identification and management, quality of life, and survival. Similarly, screening for family-reported outcomes (FROs) could help promote caregivers’ health and well-being. Though family-reported outcome measure (FROM) screening programs have emerged, the nature and extent of their development and evaluation in the context of chronic disease remains unknown. This scoping review aimed to identify the extent to which FROM screening programs among caregivers of adults with a chronic disease have been developed and evaluated. PRISMA-ScR and the methods recommended by the Joanna Briggs Institute were followed. Four electronic databases (Ovid- Medline(R), Ovid- Classic + Embase, Ovid-APA PsycInfo 1967-onwards, CINAHL Plus with Full Text, and ProQuest Dissertations and Theses) were searched iteratively to identify published literature describing FROM screening programs. Secondary search strategies and a search of grey literature were also undertaken. Data were extracted using a standardized table and analyzed using descriptive statistics and qualitative content analysis. A total of 38 studies describing 17 unique FROM programs were evaluated. Studies were published between 1999-2024 and primarily from Australia (n = 11), the United States (n = 8), and the United Kingdom (n = 6). Caregivers included (n = 4312) were most commonly spouses of patients with cancer. Screening was primarily used to tailor interventions (rather than monitor symptoms) and focused on caregivers’ needs (e.g., information, managing patient symptoms). Nurses typically responded to the screening. Most programs offered three types of follow-up: informational/educational resources, referrals to specialists or community groups, and/or real-time discussion and feedback with the interventionist. Although the FROM programs positively impacted proximal variables (e.g., preparedness), this did not translate to more distal outcomes (e.g., quality of life, anxiety). Future research on the timing of screening, caregiver engagement, and efficacious follow-up interventions is needed.
Keywords
Background
Now responsible for 75% of deaths worldwide, chronic diseases are the leading cause of disease burden globally. 1 As chronic disease incidence continues to rise, care is increasingly provided by unpaid caregivers, often family members or friends, who, on average, are older than in previous decades.2,3 These caregivers usually take on multiple care roles, including helping care recipients with their activities of daily living. 4 Due to their caregiving roles, caregivers may experience adverse negative outcomes such as high levels of physical, psychological, practical, or social burden, ultimately decreasing their physical and mental health and well-being 5 and ability to continue their vital caregiving role.
Patient-Reported Outcomes (PROs) are defined as any account of a patient’s health status (e.g., symptoms experienced) that is provided directly by the patient (also referred to as care recipient), without it being interpreted by a clinician. 6 PROs are measured using standardized tools referred to as patient-reported outcome measures (PROMs). Screening patients’ health status using PROMs has been shown to have a wide range of benefits for patients (e.g., improved health-related quality of life (QoL), decreased symptom severity) 7 and clinicians (e.g., saving time during consultations).8,9
Along the same lines, Family-Reported Outcomes (FROs) can be defined as consequences of caregiving on the lives of caregivers, such as their QoL or level of distress, as declared by caregivers. 10 With the growing recognition of caregivers’ needs and the challenges arising from their role, increased attention is being given to screening for caregivers’ health status using Family-Reported Outcomes Measures (FROMs) and their implementation in routine care.11-13 However, FROM screening programs have not been as extensively and consistently studied and implemented as PROM programs, and FROM screening is far from being the standard of care. 14 As a result, FROM screening still presents some challenges, such as the availability of valid and reliable screening measures 15 and lack of clarity regarding who should be responsible for following up on the results of FROM screening. Additionally, the specific components of FROM screening programs and their impact on caregivers are largely unknown.
Due to these knowledge gaps, this scoping review aimed to identify the extent to which FROM screening programs among caregivers of adults with a chronic disease have been used. This includes identifying key components of FROM screening programs (henceforth FROM programs), namely (a) the follow-up care offered after FROM screening, (b) the type of FROs captured and the measures used, (c) the characteristics of the caregivers targeted by FROM programs, (d) the barriers and facilitators to FROM program implementation, and (e) the effects of these programs on caregivers’ health outcomes.
Methods
A scoping review was chosen to map the literature on FROM programs and identify key knowledge gaps. 16 Methods adhered to guidance from the Joanna Briggs Institute and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses—Scoping Review Extension (PRISMA-ScR).17,18 The protocol was registered on September 18th, 2021 (https://osf.io/daqnm).
Inclusion and Exclusion Criteria
Participants and context
Caregivers were defined as those providing unpaid care and support, such as physical care, administrative tasks, and/or emotional support to someone living with a chronic disease. 19 Considering the different environments and contexts in which caregiving can occur, no restrictions were placed on the type of care or support provided by the caregiver, or the number of hours spent caregiving. Similarly, the search criteria included all types of settings, such as care recipients’ homes, community clinics, and hospitals. Key exclusion criteria were if the caregiver was paid, under 18 years of age, or caring for someone under 18 years of age. Chronic disease was broadly defined as a health condition that is not communicable, can usually be managed but not cured, 20 can be mental and/or physical, and tends to be of long duration. 1 Conditions excluded were injuries following an accident, both physical and intellectual developmental issues, and any communicable diseases.
Concept
FROM programs were defined as any planned attempt to purposefully collect FROMs among eligible participants and where the results of the screening would be reviewed by a clinician (or dedicated person) with the goal or expectation of putting in place interventions or follow-up care to respond to the results of the screening. Programs were included if caregivers self-completed at least one FROM; a checklist or other measure developed to be completed by a clinician was not eligible. FROMs could be across any domain of caregivers’ health, functioning, and/or quality of life. No restrictions were placed on the type of clinician responding to the FROM screening.
Programs focusing on PROMs were excluded. Studies in which FROMs were used to examine the prevalence of health issues or the inter-relationships among these for descriptive purposes were excluded, as were studies developing or adapting FROMs only (rather than a FROM program). Psychometric evaluations of FROMs and studies focusing on outcomes related to clinicians were also excluded.
Type of Studies
In keeping with the goal of a scoping review, all study designs were included. Conference proceedings and literature syntheses were excluded. Protocols were excluded unless a findings paper was published, and the protocol served to ensure all relevant data were extracted. French and English studies were included. No limit on time since publication was applied.
Search Strategy and Study Selection
The search was conducted using a three-step iterative process in Ovid—Medline(R), Ovid—Classic + Embase, Ovid-APA PsycInfo 1967-onwards, CINAHL Plus with Full Text, and ProQuest Dissertations and Theses Global.17,18 The search began in July 2021 and was then updated in June 2023.
Step 1
The initial Medline search strategy was developed by a medical librarian (FF) and two authors (SL, CGR). The search comprised a combination of subject headings and keywords based on the two main concepts: FROMs and chronic disease. The Medline search was peer-reviewed by a second medical librarian using the PRESS guidelines 21 and the feedback was incorporated prior to running the search. Duplicates were removed based on the guidelines published by Bramer et al. 22 Then, records were imported into the Rayyan QCRI web application and remaining duplicates were removed as titles were screened. A training session with a random sample of 35 titles took place between two authors (LAA and SL). The training involved reviewing each title and discussing their inclusion/exclusion. After this training, each author independently screened 200 titles. As the Gwets AC coefficient was 0.94 (95% CI: 0.91-0.98), the authors independently screened the remaining titles.
Following this, the abstracts of included titles were screened by one author (LAA). To ensure rigor, a second author (SL) reviewed abstracts retained from the Ovid- Medline(R) search. Reasons to exclude abstracts were labelled. Full texts were screened for inclusion by one author (LAA) and all included full texts were verified by a second author (SL). Twenty-one full texts were retained (2 of which were subsequently rejected). Throughout this initial search, the inclusion/exclusion criteria were refined, particularly pertaining to the definition of FROM programs.
Step 2
The librarian (FF) analyzed the full texts retrieved from Step 1 using the Yale MeSH analyzer 23 and revised the initial search strategy. The full search strategy, including the initial and updated search datasets, was published (https://doi.org/10.5683/SP3/ZZIRT0).
Step 3
No changes were made to the search following Step 2. The librarian (FF) then translated the revised search into remaining databases, including rerunning the search in Medline. Duplicates were removed as per Step 1 with the additional removal of records already screened. As part of the grey literature search, Proquest Dissertations and Theses database was searched. The overall study selection followed the process described in Step 1. Inter-rater reliability was established among the four authors who screened titles (SL, LAA, LOB, CGR) with a random sample of 200 titles and then inter-rater reliability was re-established at the abstract stage with 50 abstracts. The Gwet’s AC coefficients ranged from 0.85 (95% CI, 0.73-0.98) to 0.91 (95% CI, 0.87-0.94). If there was uncertainty, the title or abstract was retained to be reviewed further at the next screening stage.
Data Extraction
The data extraction table included the characteristics of the retained studies (e.g., authors, country, sample size) and specific information about each FROM program (e.g., FROMs and category of FROMs, interventions, efficacy measures). The table was revised and adjusted throughout the extraction process. Data were extracted by one author and verified by at least one other author. When changes were made to the data extraction table, the previously extracted studies were re-read for the additional data to be extracted. When a required piece of information was missing, the information was requested directly from study authors by e-mail. If there was no response, the missing information was coded as “not specified.”
Data Analysis
All data were summarized and descriptive statistics calculated using Microsoft Excel. For the impact of FROM programs, the results of only randomized controlled tirals (RCTs) and quasi-experimental studies were summarized. If outcomes were reported by feasibility/acceptability and pilot studies these were excluded from the findings as is not the purpose of these types of studies. All outcomes reported by at least three studies were included in the results section and grouped according to short- (≤1 month), medium- (>1 month to >6 months), or long- (
Results
Of the 88 231 titles screened, 3927 abstracts were screened, and 375 were included in the full-text review. From these, 25 studies were retained in addition to 13 studies identified from the secondary search strategy. Across the 38 studies reviewed,12,25-60 17 distinct FROM programs were described (many studies used the same programs in different settings). Further details are provided in the PRISMA Figure 1. PRISMA Flow Diagram.
Overview of Studies
Types of Studies
Overview of Studies.
aThe CSNAT has been updated to include 15, rather than 14 domains, and the tool is used as part of a 5-stage intervention process (CSNAT-Intervention). 62 https://csnat.org/. Click or tap if you trust this link.”>https://csnat.org
Abbreviations: T, treatment group; C, control group; T, C, no significant difference between treatment and control; T > C, treatment on reported outcome greater or higher than control; T < C, treatment on outcome lower or less than control. CG, caregivers; CSNAT, Carer support needs assessment tool (intervention); CSS-CG, CancerSupportSourceTM-Caregiver; DT, distress thermometer; eFROM, electronic family-reported outcome measure; FROM, family-reported outcome measure; GP, general practitioner (also called family physician); HADS, Hospital Anxiety and Depression Scale; I-CoPE, Information, Coordination, Preparation and Emotional support; IPOS, Integrated Palliative Care Outcome Scale; IPOS VoC, Integrated Palliative Care Outcome Scale - Views on Care; IQR, inter-quartile range; MSK, Memorial Sloan Kettering Cancer Center; N/A, not applicable; NAT-C, Needs Assessment Tool for Caregivers; PROM, patient-reported outcome measure; QOL, quality of life; RCT, randomized controlled trial; SD, Standard deviation; SNAP, Survivorship needs assessment planning tool; SPC, Specialized palliative care; ZBI-7, Zarit Burden Interview-7 items.
Study Designs
Designs included 9 RCTs,31-33,40,43,46,49,52,58 2 quasi-experimental studies,28,29 3 pre-experimental studies,38,50,55 22 acceptability and feasibility studies,12,25-27,30,34-36,39,41,42,44,45,47,48,51,53,54,56,57,60,61 1 process analysis, 37 and 1 observational cohort study. 59
Participants
Across studies, 33 included non-duplicate samples (remaining were sub-studies). Specifically, 14 studies reported on only caregivers,29-32,36,38,40,46,49-52,54,59 8 included caregivers and care recipients,33,34,41,43,44,48,53,58 4 caregivers and clinicians/clinic staff (e.g., managers),27,37,57,60 4 only clinicians/clinic staff,12,26,39,61 and 3 included caregivers, care recipients, and clinicians.45,55,56 Across these studies, 4312 caregivers were included (range = 10 to 681). Where reported, ages ranged from 22-90 years old. Most caregivers were female spouses of the care recipients. Most commonly, caregivers were providing care to someone with cancer31,32,34,41,43,44,48,49,53-56,59 or receiving palliative care (mixed diagnoses, but often cancer).29,36,39,40,46,50,51,57,60 The remaining studies included caregivers of care recipients who had a stroke,38,52 or adults experiencing motor neurone disease, 27 dementia 30 schizophrenia, 33 and older adults hospitalized on a general medical assessment unit. 58
Caregiving Context
Most studies did not provide information on caregiving context. In studies reporting mean duration of care, it ranged from 20.8 months 29 to 49.0 months. 30 The hours spent on caregiving33,60 ranged from <5 hours to 44 hours per week. One study 30 reported that 66.6% of caregivers cared for one person. Similarly, two studies reported that caregivers were the sole person providing care to the care recipient.30,59 Most caregivers (81.6%) lived in the same household as the care recipient.30,32,49,50,52,53,58
FROM Programs
FROM Program Settings
More than half of FROM programs were delivered in cancer centers31,32,34,44,48,53-56,59 or home-based palliative care/care for those with life threatening illnesses and complex care needs.12,29,40,46,50,51,57,60,61 Other settings included phone helplines,41,43,45 community care organizations,27,30 an inpatient general medical unit, 58 primary care practices,36,49 a hospital stroke center, 38 primarily home-based specialist stroke services, 52 or by a family support worker in collaboration with a clinical psychologist on the study team in participants' homes. 33
FROM screening
Types of FROMs
Only one study included a FROM for physical symptoms (Edmonton Symptom Assessment System) 32 ; otherwise, all FROMs related to unmet needs, distress, burden, or psychological concerns (stressors, anxiety, depression, emotional well-being). All but 6 studies25-36,39,40,43,44,46-52,54-58,60 screened for unmet needs, concerns, or stressors. Over half screened using a single measure, with most screening for unmet needs or stressors.12,27,29,30,33,34,36,40,44,46,48-52,58,61 Fewer studies used 2-3 FROMs, which, aside from unmet needs, most commonly assessed distress.32,43,45,54,59,60
Common unmet needs measures were the Carer Support Needs Assessment Tool (CSNAT)27,29,30,36,40,46,48,50-52,58,61 (used as part of a 5-stage intervention process) 62 or the Needs Assessment Tool for Caregiver (NAT-C).35,49 The most common measure related to distress, burden, anxiety, or depression was the Distress Thermometer (DT).32,41,43,45,53,59,60 In few studies, care recipients also completed equivalent PROMs, these included the DT,41,53 a biopsychosocial stressors related to breast cancer,34,44 and screening of near end-of-cancer-treatment emotional and physical challenges (e.g., unmet needs, symptom severity, fear of recurrence).55,56
Timing of FROMs
Most often FROMs were administered once (n = 11) to tailor an intervention/clinical response.31,34,36,38,39,44,45,50,55,57,58 Seven studies tailored their interventions by screening27,30,35,46,48,49,60 once before the intervention/clinical response and a second time at a follow-up assessment. Six studies included a varied number of screenings based on scheduled treatment or appointments with clinicians.12,32,40,51,52,59
FROM Administration
Most commonly, pen-and-paper versions of FROMs were used,27,30,32,36,38,40,48,49,57 followed by electronic and web-based platforms,31,34,44,54-56,59 and one used both paper and electronic formats. 12 In the remaining studies, the format was unclear.27,29,41,43,45,46,50-53,58,60
Communication of FROM Screening Results
None of the programs reported providing summary reports aggregating the caregivers’ responses over time to either the interventionists or the caregivers. Rather, it was the responsibility of those in one particular clinical role, typically nurses, to interpret the FROM data and respond.29,32,43,45,50,51,53,55,58,61 In 8 programs, various members of the interdisciplinary team were expected to review the FROM data and respond.12,27,38,40,44,46,57,60
Response to FROM Screening
FROMs Clinical Follow-Up
In response to the FROMs, caregivers were: (a) provided with tailored information/educational resources that caregivers were expected to read on their own27,29-32,34,36,38,40,41,44-46,48-55,58,60,61; (b) referred to clinicians (e.g., psychologist) or community services27,29-32,34,36,38,40,41,44-46,48-54,57-59,61; and/or (c) offered individualized real-time feedback sessions with the interventionist(s) responsible for responding to the FROM data.27,29-32,34,36,40,43,45,46,48-53,55,57,58,60,61 Most programs included all three.
In addition to this follow-up, two programs provided more intensive support including communication-based problem-solving34,44 and counseling with psychoeducation and coping skills training. 41 Twelve programs described developing caregiver care plans based on the FROMs.27,29,30,36,40,46,48,50-52,55,56,58
FROM-Based Severity Triage
All programs tailored their clinical follow-up based on the FROM results, but a severity triage was used in four programs that screened for distress and/or depression.31,41,54,59 In the study by Hawkes et al., 41 helpline operators used a stepped-care approach based on caregivers’ level of distress. In addition to basic information and advice, psychoeducation and emotional support were provided for DT scores of 0-3, more focused psychoeducation and coping skills training with a therapist were offered for scores of 4-8, and more acute care was offered for scores of 9-10, including specialist services or multi-disciplinary team intervention. In two studies,31,54 caregivers were offered education materials for items rated as being of lower severity; they were additionally offered the option of speaking with someone (e.g., referral) for higher severity concerns. Shaffer et al. 54 noted that while referrals were offered based on the severity of the concern, caregivers had the option of approving or refusing the referral.
Four programs described responses to possible emergencies. All these programs included screening for distress and/or depression. In two studies,31,54 caregivers who met the criteria for depression were assessed for self-harm and provided a referral for counseling. In a helpline-based FROM program, 45 callers reporting a score of 4 or more on the DT were referred to the organization’s counselling services, and in another study 32 the nurse liaised with the caregivers’ family physicians when high distress was reported.
FROM Adherence
Only two studies32,59 explicitly reported on caregivers’ adherence to completing the FROMs. In the study by Wishart et al., 59 135 caregivers were asked to complete electronic FROMs weekly during the care recipients’ cancer treatment. Overall, the mean adherence rate was 41% (range 11-100%). Full adherence (defined as ≥ 80% of FROMs completed) was achieved by 18% of caregivers, 32% were partially adherent (33-79% completed), and 50% demonstrated low adherence (< 33% completed). However, attendance at the appointments was not mandatory so screenings may have been missed because the caregiver was not present. The 54 caregivers who participated in the intervention arm of an RCT 32 were asked to complete distress screening every two months for up to 9-months. This was followed by a meeting with an oncology nurse who liaised with their family physicians, if distress was high. All caregivers completed baseline screening and an initial 20-minute meeting with a nurse. Adherence to the subsequent FROMs was 83%. The number of contacts with the oncology nurse was not specified; however, it was noted that though the nurse was made available for contact, only two caregivers reached out, and the nurse initiated all other contacts. In both studies, the FROM screenings were estimated to take less than three minutes to complete.
Clinician and Caregiver Feedback
Clinician Feedback
Fourteen studies reported on clinicians’ views of the FROM programs, with most (n = 9) analyzing qualitative data.12,36,39,47,53,55,56,60,61 Feedback was predominantly positive, with clinicians lauding the inclusion of caregivers in care12,36 and the structured method through which to support caregivers.26,37,53
Perceived Benefits Improved communication
Improved communication with caregivers was reported.26,39,47,53,57 The programs fostered conversations that might not have occurred otherwise,26,39,47,61 enabled discussions on challenging topics, 53 and guided clinicians on what questions to ask. 57 FROM programs also helped identify issues clinicians had not anticipated, challenged assumptions about which caregivers required support,26,27,39,61 and strengthened caregiver-clinician relationships.26,61
Focus on Caregivers’ Needs
FROM programs were seen as legitimizing caregivers’ needs, providing implicit “permission” for caregivers to request support.12,26,27,39 Formal screenings were noted as legitimizing clinicians’ spending clinical time on caregivers 26 and making caregivers more visible in their work. 61 Acknowledging caregivers’ needs was seen in itself as therapeutic.27,60
Increased Efficiency
Clinicians noted that FROM programs could streamline resource allocation through the early identification of concerns,26,39,53,57,61 receiving fewer spontaneous calls from care recipients and caregivers, 53 and by reducing resource use for more problematic concerns later in the illness trajectory. 57
Perceived Barriers
Concern about Responding to Results
Some clinicians were reluctant to administer the FROMs due to concerns that it could feel awkward or raise issues they are unprepared for,26,57 or lack the resources to address.36,37,47,61 FROM screening might unrealistically raise expectations of available services.26,39 Across studies, clinicians also reported the challenge of balancing a focus on caregivers with the care needs of care recipients.27,47,57 In one study, nurses were more likely to endorse actions/solutions related to supporting the caregiver in caring for the care recipient directly (e.g., information about the care recipient's medication) as being within their purview rather than supporting the caregiver in meeting their own needs (e.g., the caregiver’s health). 37
Increased Workload
Clinicians suggested several ways that increased workload could potentially be attenuated,12,26,37,47,55-57 including recognizing caregivers as being clients, which would allow for corresponding time and resources dedicated to meeting their needs as well as the care recipient’s, 26 limiting required documentation, 26 ensuring it did not duplicate existing practices, 37 integrating screening and response into their existing notes, 26 and assistance of administrative team members, lay navigators, or social workers in coordination (e.g., follow-up reminder calls to caregivers). 60
Added Burden for Caregivers
Clinicians also noted apprehension about FROMs adding to caregivers’ burden26,39,47 and/or potentially increasing their distress or anxiety.26,39 They articulated worry about caregiver readiness to discuss certain issues 39 or the screening unearthing potential problems caregivers had not anticipated. 26
Structural Barriers
These barriers included no clear guidelines regarding whose role it was to respond to caregiver needs,56,57 limited contact with caregivers in the clinic, 60 a lack of physical clinic space,55,56 difficulty speaking with caregivers alone (and whether this was allowed),37,47 and insufficient time to discuss caregivers at team meetings. 57 The need for further training to undertake screening and response was also emphasized, 26 as were ethical concerns regarding creating a medical record for caregivers who did not have a formal diagnosis 57 as well as what information could be shared with caregivers if the care recipient was not present. 47
Perceived Facilitators
Flexibility in when and how the FROM screening was undertaken was a facilitator.12,26,27,39,56,57,60 Clinicians preferred that screening not occur at predefined times but, rather, when they felt it was appropriate12,27,39 or as needs arose.39,56,60 Clinicians reported developing their own ways of introducing the FROMs, 39 including adapting the questions to the individual rather than reading word for word.12,61 The option of remote or telephone screening was also highlighted as a potential facilitator.53,55 Screening for outcomes that clinicians felt were relevant and ensuring that clinicians understood how the results would be used were perceived as critical to their acceptance. 12 Clinicians reported that settings in which contact with the caregiver was common (e.g., home care) 60 or in which continuity of care was offered (e.g., primary care) also facilitated providing caregiver support. 36
Caregiver Views
Seventeen studies reported on the caregiver views of the FROM programs reporting mostly positive feedback. Twelve of these collected qualitative data from interviews or focus groups,25,27,30-32,35-37,48,51,54,56 four were based on quantitative questionnaire feedback,34,38,42,60 and one used an open-ended questionnaire. 55 FROM screening was generally welcomed, 25 with caregivers reporting being grateful that someone was interested in their needs 37 and that completing FROMs was worth their time and effort.42,55
Perceived Benefits
Peceived benefits mirrored those identified by clinicians.
Improved Communication
Caregivers reported that FROMs provided a starting point for expressing their needs.25,27,51
Focus on Caregivers’ Needs
FROMs provided space for caregivers to reflect on their situation and granted them permission to identify and consider their own needs.27,30,48,54 FROMs highlighted needs that caregivers may have been reluctant or found challenging to bring up.25,30
Validation of their Important Role
The FROM programs validated caregivers’ efforts and made them feel appreciated for their role.25,27,30,48,54 Some caregivers also noted that the screening was affirming, helping them recognize their own capacity to manage many of the challenges discussed. 48
Linking to Resources
The FROM programs helped caregivers discover previously unknown services and support.25,27,30,35,51,54 Accessing these resources left caregivers feeling supported, reassured,25,30-32,48,51,60 secure, as though they had a security net,32,51 and less isolated.25,31,48 Some also became more proactive in addressing their needs,31,35 and others reported that care recipients may also feel reassured knowing their caregiver was being offered this support. 48
Perceived Challenges
Caregivers reported that FROM screening might evoke strong emotions about their overwhelming journey,27,35 their future,48,51 or the death of the care recipient.25,48 Another challenge was balancing caregiver needs with those of the care recipient.25,35,37,48 Some caregivers hesitated to view themselves as legitimate participants 37 or felt uncomfortable taking time away from care recipients during consultations. 35 Some pointed out that the difference between their own needs (e.g., own health) and their needs related to being a ‘better caregiver' (e.g., providing personal care for the care recipient) could become blurred. 27
Feedback on FROM Program Format and Delivery
In one study, caregivers noted that written formats might be overlooked amidst the abundance of paperwork they received. 36 Using tablets for the screening34,55,56 and the telephone for the overall intervention 25 received positive feedback. Ease of completion of FROMs was paramount,25,27 with caregivers appreciating self-completion for allowing more time to provide thoughtful responses. 25 Tailoring FROMs to the caregiver’s specific situation, such as the stage of the care recipient’s illness, was also emphasized.27,31,54 Particular FROMs received positive feedback: the NAT-C was praised for its simplicity and clear rating system 35 ; the distress screening tool (measuring distress, problems, and symptoms) provided a valuable outlet for caregivers to express emotions they rarely verbalize 32 ; and the CSNAT was described as both simple and comprehensive.25,27,30
Caregivers stressed the importance of programs addressing both their needs and those of the care recipient. 56 They valued having sufficient time to complete FROMs, preferably when it would not detract from caregiving responsibilities. 25 While some caregivers preferred completing FROMs alone to avoid external influence, 27 others appreciated having someone available to offer guidance, especially when unprepared for issues or emotions raised during the process. 51 A well-structured and planned approach to screening and follow-up was generally well-received. 48 Caregivers appreciated being the one to direct topics of discussion.36,51
In terms of who should respond to the FROM data, findings were mixed as to whether family physicians were well positioned to take on this role.32,35,36 In some studies, caregivers also discussed the idea of having a separate visit with the care recipients’ clinicians.25,32,51,55 They reported valuing the opportunity to speak privately and openly32,51 and wanting to complete the screening without having to share their concerns with the care recipient. 25
Views on when to screen varied. Some reported wanting screening early on, whereas others felt that it was most important late in the caregiving trajectory when distress might be more elevated.31,35 Some suggested screening was most needed during transition points. 32
Efficacy of FROM Programs
Caregiver Distress and Strain
Six RCTs,31-33,46,52,58 one part-randomized stepped wedge cluster trial, 40 and one quasi-experimental trial 29 examined caregiver distress. Two46,58 reported a statistically significant reduction in the short-term (not sustained to the medium term). No significant reductions were reported in the three RCTs measuring distress in the long-term31-33,52 or the trial measuring distress 4-5 months post-bereavement. 40
Of the three RCTs46,58 and one quasi-experimental study 29 examining caregiver strain, one RCT 58 found a significant reduction in caregiver strain in the medium-term. Across the studies, no positive effects were reported in the short- or long-term.
Caregiver Anxiety and Depression
Of the four RCTs31,32,49,52 measuring anxiety and six RCTs examining depression,31-33,43,49,52 none reported a significant reduction at any time point.
Caregiver Unmet Needs
Four RCTs31,33,43,49 examined unmet needs as an outcome and two found improvements.33,43 Of note, one of these FROM programs 33 was intensive, offering 10-20 sessions with a clinical psychologist, including interventions tailored to the care recipient, caregiver, and/or dyad needs.
Preparedness for Caregiving
The two RCTs32,58 reporting on preparedness for caregiving found improvements at all data collection time points.
Caregiver QoL
Four RCTs31,32,46,49 and one quasi-experimental study 29 examined caregiver QoL. Of the three reporting on overall QoL,31,32,46 none found significant improvements at any time point. No improvement was reported across the three studies29,31,49 measuring physical subscales of caregiver QoL/well-being. Five of the studies29,31,32,46,49 included emotional and/or psychological measures of QoL/wellbeing; of these, one RCT 31 found a significant positive effect on emotional well-being.
Discussion
The impact of caregiving is well-documented; the focus is now on establishing timely, tailored support to ensure caregivers have access to the assistance needed. 63 This scoping review focused on the extent to which FROM programs among caregivers of care recipients with a chronic disease have been developed and evaluated. Findings suggest that: (a) two types of FROM programs have been commonly used: those focusing on unmet supportive care needs and others more aligned with traditional PROMs (e.g., DT); (b) the main goal of FROM screening has been to tailor interventions, not necessarily for symptom monitoring; (c) FROM screening appears acceptable, but efficacy is mixed at best; (d) caregivers focus on patients, highlighting the ongoing challenge of their engagement in interventions; (e) developing a stepped care approach to respond to FROMs might be more acceptable; (f) timing of the FROMs was not optimal; and (g) innovative models of FROM implementation have been used, including delivery by cancer helplines and through primary care. Each finding is now discussed in turn.
Two types of FROM programs were developed: (a) focused on unmet needs or (b) adapting traditional PROMs (DT, Hospital Anxiety and Depression scale, Edmonton Symptom Assessment System). Results do not suggest that one approach is superior to the other in terms of efficacy. A qualitative study identified five categories of FROs caregivers wish to address: emotional, physical symptoms, practical/social issues, cancer care, and financial concerns. 64 The unmet needs approach addresses most of these areas, helping caregivers identify and prioritize their support needs. However, this approach is focused on tailoring interventions according to unmet needs, and not necessarily monitoring caregivers’ symptoms.
In contrast, programs adapting traditional PROMs primarily focused on emotional concerns or symptoms, which is aligned with other studies emphasizing that caregivers prioritize screening for these emotional outcomes.52,63,64 The DT, Hospital Anxiety and Depression scale, and Edmonton Symptom Assessment System Scale have been validated among caregivers.32,41,42,59,65,66 Co-collecting the same PROM and FROM data can provide a holistic understanding of the patient-caregiver dyads’ challenges, which in turn can further inform the tailoring of not only individual interventions, but also dyadic ones. Another potential advantage is that many of these PROMs are already used in clinical practice and their adaptation for caregivers could encourage broader implementation. Few FROM programs integrate both unmet needs and distress screening.32,43,45,54,59,60
Findings on FROM programs’ impact on caregivers’ health outcomes were inconsistent, despite their high acceptability. Low adherence may explain this; one study reported full adherence (≥80% completion) in only 18% of caregivers. 59 Such adherence levels may influence proximal variables, like preparedness, but fail to affect harder-to-shift outcomes, such as anxiety. Proximal outcomes, which often operationalize the mechanism of action of FROM programs, did not consistently translate into changes in distal variables. Also, as most interventions had a broad focus (e.g., several domains of unmet needs), the typical health outcomes selected (e.g., anxiety, quality of life) might not capture the impact of such an all-encompassing approach.
It is well-known that screening for PROMs alone is not sufficient, and that follow-up care is essential to ensure efficacy. 67 Across studies reviewed, even with dedicated clinicians available to address the FROM results, caregivers did not access this service as much as was anticipated. This is consistent with studies suggesting that less than half of caregivers with distress seek help or accept referrals to services.43,59 Lower than expected caregiver engagement emphasizes a need to “market” to caregivers the importance of meeting their needs and how this can contribute to caregivers maintaining their role. None of the reviewed studies reported introducing FROMs or had as part of their onboarding an explanation of how completing FROMs and accessing the services offered could ultimately improve care recipients’ outcomes. Incorporating an assessment of caregivers’ expectations—whether related to emotional support, practical assistance, respite care, or improved communication with clinicians —could further inform the design and delivery of FROM programs. By aligning program offerings with caregivers’ expectations, engagement may improve. In addition to promoting the importance of caregiver self-care, our team has found high caregiver acceptability for self-directed interventions (booklets and web-based intervention).68-70 Providing caregivers with these low intensity interventions, following FROMs, could increase their access to a (universal) minimal level of support. This suggestion is consistent with a previous study that found caregivers prefer to receive information from clinicians when their burden is high, but they prefer other information sources (e.g., internet) when burden is low. 71 High-intensity support might then be offered within a stepped care approach, 72 after caregivers have tried low-intensity interventions and only for those needing it. Stepped care might not only be more acceptable to caregivers, but also conserves scarce clinical resources.73,74
Another explanation for the lack of efficacy might be that the timing of the FROMs was not optimal. FROMs were most often administered once or twice for the primary purpose of tailoring follow-up interventions. This contrasts with the main purpose of PROMs, which is typically remote symptom monitoring, whereby longitudinal PROM data are used to determine symptom severity and the impact of intervention. 75 The timing of FROMs was partially attributed to what was feasible to achieve given the length of the studies. In one study, 32 FROMs took place every two months, and caregivers flagged that this did not correspond to key transition points for them, potentially underestimating caregivers’ distress.
Real-world implementation of PROMs has been the focus of much research for over two decades, and despite this, implementation and spread remain limited.7,76-80 FROMs implementation faces several unique barriers. For instance, many teams question whether it is within their scope of practice to respond to FROM data. Some of the studies reviewed used unique implementation models. For instance, Hawkes et al. 41 explored the acceptability of using cancer telephone helplines to screen for PROMs and FROMs, based on who called. In another study, 43 helpline oncology nurses called caregivers recruited from cancer center directly three times over a 4-month period. Needs identified by the DT were then addressed by the nurse who also facilitated navigation to other services. Mitchell et al. 49 conducted an RCT of a family physician-based toolkit, which included a caregiver-reported needs checklist and a compendium of resources to help the family physician respond to caregivers’ needs. The intervention had mixed effects and seemed most efficacious among caregivers who were anxious or depressed at the outset of the study. The potentially limited efficacy of this FROM program may stem from caregivers’ preference to share their FROM data with the patient’s oncology team rather than their family physician. One primary reason for this preference is that oncology teams are perceived to have a deeper understanding of the specific challenges caregivers face in the context of cancer care, allowing for more tailored and relevant support. 64
Conclusion
Future Research
Future research should explore the potential of dyadic PROM and FROM programs, as patients’ and caregivers’ interdependent symptoms, responses, and needs may amplify the impact of screening. 81 More research is needed to delineate the mechanisms of action of FROM programs, determining whether targeting unmet needs and/or emotional FROs yields greater efficacy and corresponding distal outcomes that might be impacted. Using hybrid trials could also advance the implementation of FROM programs, documenting efficacious implementation strategies. 82 Moreover, more evidence is needed to identify caregiver sub-groups that may benefit most from FROM programs, considering factors like age, care recipient’s illness, and context. For example, in the RCT conducted by Mitchell et al. (2013), 49 while there were no between-group differences in the outcomes found from baseline to any time point, the findings indicated that certain groups with greater needs benefitted from the intervention. Caregivers who were clinically anxious reported significant improvement in mental health scores at 3-months and those who were clinically depressed avoided the significant worsening of anxiety that occurred in the control group at 6-months. Understanding these variations could help tailor programs for greater efficacy.
Clinical Implications
Clinicians can advocate for integrating FROMs into routine care to identify caregivers needing support early. Potentially, they may rely on low-intensity intervention within a stepped care approach that can address caregivers’ unmet needs without adding strain to healthcare teams.
In conclusion, despite increased focus on family-centered care, the implementation of FROMs in cancer care remains scarce. This review provides concrete guidance to support the evidence-based development of FROM programs. Future research on the real-world implementation of FROM programs is needed.
Footnotes
Author Contributions
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was funded by the Canadian Partnership Against Cancer and a Canadian Institutes of Health Research (CIHR) Canada Research Chair.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Data Availability Statement
Data and materials used to conduct this study will be made available by emailing the corresponding author. There is no analytic code associated with this study.