The psychological burden of waiting for procedures and patient‐centred strategies that could support the mental health of wait‐listed patients and caregivers during the COVID‐19 pandemic: A scoping review

Abstract Background Waiting for procedures delayed by COVID‐19 may cause anxiety and related adverse consequences. Objective To synthesize research on the mental health impact of waiting and patient‐centred mitigation strategies that could be applied in the COVID‐19 context. Methods Using a scoping review approach, we searched 9 databases for studies on waiting lists and mental health and reported study characteristics, impacts and intervention attributes and outcomes. Results We included 51 studies that focussed on organ transplant (60.8%), surgery (21.6%) or cancer management (13.7%). Most patients and caregivers reported anxiety, depression and poor quality of life, which deteriorated with increasing wait time. The impact of waiting on mental health was greater among women and new immigrants, and those of younger age, lower socio‐economic status, or with less‐positive coping ability. Six studies evaluated educational strategies to develop coping skills: 2 reduced depression (2 did not), 1 reduced anxiety (2 did not) and 2 improved quality of life (2 did not). In contrast, patients desired acknowledgement of concerns, peer support, and periodic communication about wait‐list position, prioritization criteria and anticipated procedure date. Conclusions Findings revealed patient‐centred strategies to alleviate the mental health impact of waiting for procedures. Ongoing research should explore how to optimize the impact of those strategies for diverse patients and caregivers, particularly in the COVID‐19 context. Patient or Public Contribution Six patients and four caregivers waiting for COVID‐19‐delayed procedures helped to establish eligibility criteria, plan data extraction and review a draft and final report.

tality, compared with procedures that impact quality of life but are less time-sensitive (e.g. cataracts, joint replacement). 9,10 Alreadystrained health systems may face added future pressure to manage mental health needs emerging from the pandemic. 11 Thus, patientcentred strategies are needed to prevent or alleviate the mental health impact on patients waiting for procedures. Patient-centred care is widely advocated as a fundamental component of highquality care because it leads to many positive outcomes for patients, family and health-care professionals across health-care settings and jurisdictions. 12,13 Prior research on the psychological impact of infectious outbreaks (e.g. SARS, Ebola) did not include assessment of wait-listed patients. 14 Recent pandemic research focussed on only the logistics of managing wait lists. 15 Similarly, surgical policy across jurisdictions focussed on prioritizing procedures, screening patients and protective equipment requirements, with no specific guidance on patient-centred communication about delays. 16 There is no recent or thorough synthesis on mental health and wait lists, a long-studied health-care issue and untapped source of knowledge to address this gap. 17 We aimed to synthesize published research on patient-centred strategies to support mental health among patients (and caregivers) waiting for procedures and identify knowledge that could potentially be applied in the COVID-19 context. Our objectives were to describe the following: (a) Mental health impact of waiting on diverse patient groups; (b) Determinants of the mental health impact of waiting; and (c) Attributes and effectiveness of strategies to support mental health among wait-listed patients.

| Approach
We conducted a scoping review comprised of six steps: scoping, searching, screening, data extraction, data analysis and collaborator interpretation of findings; and complied with standard methods, 18,19 and a reporting checklist specific to scoping reviews. 20 Similar in rigour to a systematic review, we chose a scoping review because it includes a range of study designs and outcomes to reveal existing knowledge and identify issues requiring further primary study. [18][19][20][21] As this research was funded by a COVID-19 opportunity that required results in one month, we also employed a rapid review approach, characterized by single language (English), short time frame (last 10 years), exclusion of grey literature and non-duplicate screening/data extraction. 22 We did not require research ethics board approval as data were publicly available, and we did not register a protocol. The research team, collaborators and patient/family research partners informed the study at four points: established eligibility criteria, reviewed a preliminary summary of extracted data, reviewed a draft report and reviewed the final report.

| Scoping
We conducted an exploratory search in MEDLINE using Medical Subject Headings: waiting lists AND anxiety or psychological distress or stress, psychological. By reviewing examples of relevant studies, we generated eligibility criteria based on the PICO (participants, issue, comparisons, outcomes) framework and planned a more elaborate search strategy. we excluded studies that measured mental health not related to waiting for procedures so that findings unambiguously reflected the impact of waiting rather than an underlying health-care issue.

| Eligibility
Studies referring to usual care as 'wait-list controls', assessing anxiety directly prior to appointments or procedures, based on waiting for results of procedures, or involving patients who chose watching waiting/active surveillance were not eligible, nor were publications in the form of protocols, abstracts, editorials or letters to the editor.

| Searching and screening
ARG, who has medical librarian training, developed a search strategy ( Institute Database of Systematic Reviews from 1 January 2010 to 8 July 2020. ARG and a research associate (RA) independently screened the same 50 titles and abstracts and disagreed on the eligibility of one item, leading to a clarification in eligibility criteria that quality of life assessment must pertain to the impact of wait-listing and not solely on physiological factors. ARG screened remaining titles and abstracts, and retrieved and screened full-text articles concurrent with data extraction.

| Data extraction and analysis
We extracted data on study attributes (author, publication year, country, goal, disease, wait-listed procedure, research design, participants), mental health impact of waiting (instruments used, results), determinants of the impact of waiting on mental health (those reported by studies), and strategies to support mental health (design, effectiveness). We described strategies using the Workgroup for Intervention Development and Evaluation Research reporting framework (content, format, delivery, timing, personnel). 24 ARG extracted and tabulated data, and used summary statistics, tables and text to report study characteristics and results. We did not assess methodological quality of included studies as this is not required of scoping or rapid reviews. [18][19][20][21][22] We could not undertake further statistical analyses to combine outcomes across studies as they varied widely by disease, procedure, study design and outcomes.

| Search results
We identified 8509 primary studies, 8383 were unique, and 8269 were excluded based on title/abstract screening. Among 104 fulltext articles screened, we excluded 55 studies that did not assess mental health related to waiting (36), focussed on pre-procedure anxiety not related to waiting (10) or were a duplicate (7) or ineligible type of publication (2). Among 10 excluded reviews, we identified 2 unique eligible studies. We included 51 studies in this review ( Figure 1). Table S2 reports extracted data.

| Impact of waiting on mental health
Of the 31 (60.8%) studies that assessed the mental health impact of waiting, 18 (58.1%) employed quantitative methods. Four (22.2%) studies demonstrated the emotional toll of waiting on caregivers. In one study, many caregivers had depression (75.4%), difficulty concentrating (75.0%) and insomnia (44%) and had ceased employment (59.0%) or social activities (41.0%). 76 Caregiver anxiety was greater than patients upon wait-listing (F = 7.52, P =.008) and at 6 months (F = 11.31, P = .002) and increased over time, but scores did not differ for depression, which remained stable over time for both groups. 55 Another study similarly found that anxiety was greater among caregivers (mean 10.80, SD 5.07, P = .001) but depression was similar (mean 6.65, SD 4.07, P = .820) to patients. 73 Patients whose caregivers had lower anxiety or depression were more likely to report positive coping through social support (P = .007), emotional control (P = .030) and active fighting (P = .032). 61   (7) Publication type (2) Records after initial screening (n=104) Records identified in databases (n=8509)

Reviews excluded (n=10)
Eligible studies (n=2) Cochrane Library/Joanna Briggs (n=0 eligible reviews) procedure or clinical outcomes of the procedure. Restriction referred to inability to perform physical functions due to immobility or pain, and inability to work or take part in social activities. Life on hold was in part due to restriction, but also being constantly on alert for a phone call, and unable to make future plans as a result of health limitations or uncertainty about timing of the procedure.
Coping strategies varied across individuals and included acceptance, distraction, social support and constructive use of time. Participants said that it was exhausting to deal with the gamut of impacts that pervaded all aspects of their lives, referring to it as a 'daily emotional roller-coaster' and an 'immense struggle'. Exhaustion increased over time, reducing motivation to maintain a healthy lifestyle, and turning hope into despair. As a result, trust in the health-care system eroded.
Participants felt anger that they were not considered a priority and 'at the mercy of the health-care system' and frustrated with the lack of information, and ambiguity and perceived inequity in prioritiza-

| Determinants of the mental health impact of waiting
Sixteen (31.4%) studies assessed factors that influenced the mental health impact of waiting.
One study of caregivers found that caregiver burden scores were negatively associated with depression (b = 0.43, P < .001), and caregiver burden (b = 0.38, P < .001) and avoidant coping style (b = 0.17, P = .002) were negatively associated with anxiety. 62 In one study involving both patients and caregivers, lung transplant patients had greater anxiety compared with heart transplant patients (P = .04); and lung cancer patients (P = .04) and patients < 50 years of age (P = .029) had greater coping ability. 30 The same study found that 22.9% of caregivers had medium to high burden levels; determinants were not reported.

| Strategies to support mental health while waiting
Six (11.8%) studies evaluated strategies to support mental health (

TA B L E 4 (Continued)
One study of 3 1-hour in-person group sessions and 6 1.5-hour group teleconferences involving 27 intervention group patients improved quality of life (6.2 points, 95% CI 1.66 to 10.8, P = .01) but not anxiety (−1.88, 95% CI − 8.14 to 4.37, P = .55) or depression (2.81, 95% CI 0.02 to 5.60, P = .05) compared with the control group. 36 The second trial of a single 3-hour session plus a handout involving 66 intervention group patients did not improve quality of life, distress or pain acceptance compared with the control group. 42 Two randomized controlled trials evaluated individualized therapy.
One study of 6 30-minute telephone sessions over 12 weeks for Our findings suggest several implications for policy and practice.
Patients and caregivers waiting for procedures experience anxiety, depression and poor quality of life, which escalates over time and can lead to future strain on the healthcare system. 8,11 Given that COVID-19 policies focus on wait-list management, 15,16 it may take up to two years to clear pandemic wait lists or longer if return to normal service is further delayed, 3 and there is a known association between anxiety or depression and adverse outcomes, 9,10

| CON CLUS ION
This study emphasizes the need for policy and practice to implement strategies that support the mental health of wait-listed patients and caregivers now and beyond COVID-19. The need may be greater among women and new immigrants, and those of younger age, lower socio-economic status, or with less-positive coping ability or longer wait times. Patient-centred strategies include a mechanism for affected persons to report mental health impact and hear that their concerns are acknowledged, support from peers to help them through the waiting period and periodic updates about position on the wait list and possible procedure date.

ACK N OWLED G EM ENTS
We thank our patient/family research partners (not named) and collaborators: Heart & Stroke Foundation of Canada, Canadian Cancer Society, Cancer Care Ontario-Ontario Health, and the Canadian Academy of Psychosomatic Medicine, who informed, interpreted and reviewed this work.

CO N FLI C T O F I NTE R E S T
None to declare. to the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.

DATA AVA I L A B I L I T Y S TAT E M E N T
All data are included in the manuscript and supplementary files.