Ecosystem Barriers and Facilitators Linked to the Fear of Cancer Recurrence: An Umbrella Review
Abstract
:1. Introduction
2. Methods
2.1. Study Design
2.2. Inclusion Criteria and Exclusion Criteria
2.3. Search Strategy
2.4. Data Extraction
2.5. Assessment of Methodological Quality
2.6. Data Synthesis
3. Results
3.1. Study Inclusion
3.2. Characteristics of Included Studies
3.3. Methodological Quality
3.4. Findings of the Review
3.4.1. Ecosystem
3.4.2. Determinants
3.5. Barriers and Facilitators
4. Discussion
4.1. Ecosystem
4.2. Barriers and Facilitators
4.3. Determinants
4.4. Characteristics
4.5. Limits
4.6. Clinical Implications and Perspectives
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Conflicts of Interest
References
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Authors (Year) | Country of Included Studies | Number of Studies Included/Number of Participants/Design | Determinants | Ecosystems | Barriers | Facilitators | Quality Assessment |
---|---|---|---|---|---|---|---|
Anderson et al. (2021) [21] | USA (16 studies) Australia (1 study) Canada (1 study) UK (1 study) | 19 included articles N = 16,672 patients Quantitatives (n = 14) Qualitatives (n = 4) Mixed methods (n = 1) | Meaning External factors Poorer understanding of the healthcare system | External factors Healthcare system | Poorer understanding of the healthcare system | Cultural beliefs Support from family and community | Moderate |
Bamidele et al. (2022) [22] | UK (5 studies) USA (4 Studies) Canada (1 study) | 10 included articles N = 139 Black men with different cancer Qualitatives (n = 10) | Isolation from social contacts injured self-esteem marital insecurities desired more information from their healthcare providers to manage these challenges partner (support) family wider social networks (peers who undergone similar illness experience) | Unstructured: partner peers family Structured church community community cultural group online support group | Self as a barrier underpinned by masculinity concerns and personality types Cultural stigmatisation of masculine sexual dysfunction Healthcare system, structure and process as Barriers Financial and physical health challenge | Influence of others Self-motivation as informed by the illness experience and treatment side-effects | High |
Crist and Grunfeld (2013) [23] | USA (17 studies) UK (8 studies) Netherlands (5 studies) Canada (4 studies) Germany (3 studies) Australia (2 studies) Japan (1 study) Norway (1 study) South Africa (1 study) South Korea (1 study) | 43 included articles N = 13,953 patients with different cancer Cross-sectional (n = 16) Longitudinal (n = 11) RCT (n = 6) Prospective (n = 6) Case control (n = 1) Prospective + Cross-sectional (n = 1) Retrospective (n = 1) Secondary analysis (n = 1) | Coping Medical information Annual check-up Concurrent family stressors Unpartnered patients Having children Employed Marital status, family ressources are unrelated to FCR | Family and psychological factors | Having young children | Interventions targeting illness perceptions and inappropriate checking behaviour using a form of cognitive behavioural therapy | Moderate |
Dawson et al. (2016) [24] | USA (4 studies) Germany (1 study) Canada (1 study) France (1 study) | 7 included articles N = 719 participants RCT (n = 3) RCT pilot feasability (n = 1) Longitudinal (n = 1) Qualitative (n = 1) Case study (n = 1) | Coping Communication Emotional support | Oncology Physicians/providers | Dysfonctional coping strategies | Awareness of available resources perceived helpfulness of the resources received better coping and problem solving Communication Counseling Group Therapy Self-efficacy | Moderate |
Deckx et al. (2021) [14] | UK (10 studies) USA (9 studies) Canada (5 studies) Netherlands (4 studies) Australia (4 studies) Denmark (1 study) | 33 included articles N = 39,395 patients Observational quantitative (n = 19) Intervention (n = 9) Qualitative (n = 5) | Number of visits of general practitioners | General practitioners | General practionners as gatekeeping | High | |
Gormley et al. (2022) [25] | USA (4 studies) Australia (4 studies) Canada (3 studies) UK (2 studies) | 13 included articles N = 2742 Participants Cross-sectionnal (n = 10) Qualitative (n = 2) Longitudinal (n = 1) | No association with religion No association with Previous cancer experience in friend/relative, recurrence in friend or relative Motherhood status Social support Cognitive behavioral factors (e.g., cognitive processing, metacognition, illness intrusiveness) Surveillance: Health Behaviours (e.g., adherence to breast self-examination and mammography schedule, unscheduled visits to healthcare provider) Parenting stress | Family Children Friends Healthcare provider (General Practitionner) Healthcare system | Breast self-examinations obsessively more frequent unscheduled healthcare provider visits Avoidance of surveillance visits Social constraints Metacognitions (believing that worry is harmful, seeking control over cognition) | Mammography or Ultrasound in the past 12 months Support needs/Support groups Confidence in disease management Self-efficacy | High |
Hampton et al. (2024) [26] | South Korea (5 studies) China (5 studies) USA (4 studies) Canada (3 studies) Sweden (3 studies) Australia (2 studies) Many countries (2 studies) UK (1 study) France (1 study) Romania (1 study) India (1 study) Germany (1 study) Croatia (1 study) | 31 included articles N = 11,857 patients Cross-sectional (n = 25) Mixed-Methods (n = 5) 1 RCT (n = 1) | Higher level of education Parenthood Upcoming appointment related to cancer Personal experience with cancer related death | Healthcare Parenthood | Distrust in healthcare Upcoming appointment related to cancer Personal experience with cancer related death | Higher level of education Planing a daily routine | High |
Koch et al. (2013) [3] | USA (14 studies) Germany (1 study) Netherlands (1 study) Norway (1 study) | 17 included articles N = 6673 patients with different cancer Longitudinal (n = 11) Cross-sectionnal (n = 4) Qualitative (n = 2) | Partnership Never fathered children Social Support Family distress Patient provider communication | Clinicians Care providers | Communicating more with providers raised FCR | Survivors care plans implemented in the US and UK Remaining fear should be used as a motivation for self-care Patient provider communiction should be targeted to the needs of the individual patients (e.g., younger age, less education) | Moderate |
Lavery and O’Hea (2010) [27] | USA (6 studies) UK (1 study) India (1 study) Brazil (1 study) Germany (1 study) | 10 included articles N = 904 participants (2 studies did NR) Qualitative (n = 4) Longitudinal (n = 3) Cross-sectionnal (n = 2) Pilot study (n = 1) | Public religious practices | NR (not reported) | Public religious practices Private religious coping | Low | |
Lisy et al. (2019) [28] | Australia (17 studies) | 17 included articles N = 5925 patients with different cancer Cross-sectionnal (n = 15) Longitudinal (n = 2) | Information needs and medical care issues, emotional and relationship issues Physical and daily living, sexuality, patient care and support, health system, information Access and continuity of care, relationships, financial concerns, information Structure of care, process of care, relationships, information, daily living, school/occupational Information/support, sexual, future needs Cope with the uncertainty about the future Worries and emotions of parteners, family members, friends Support partners and family members Unmeet needs for help with changes to sexual feelings and relationships | Family (Partners and family members) Friends Supportive care Healthcare professionals Peer support | Unmeet needs within the supportive care domain were access and information about complementary and alternative therapies Healthcare professionals communicated to coordinate care Empoyed Less social support | Patient-reported outcomes (improved communication between patients and their treating teams, increased identification and management of symptoms, increased health-related quality of life, increased patient satisfaction, and reduced emergency departement utilisation) | Moderate |
Liu et al. (2019) [29] | USA (6 studies) UK (5 studies) Australia (2 studies) Germany (1 study) Netherlands (1 study) Ireland (1 study) | 16 included articles N = 3885 patients Intervention (n = 16) | Information needs/provision Unsatisfaction with information provided Patient-centred assessment of fears Provision of risk information by the oncologist, reassurance/normalisation, referral to cancer support groups and online resources, peer counselling and psychologist | Peer counselling Oncologist Psychologist referral | Unsatisfaction with information provided | Fill information needs/provision | Moderate |
Lu et al. (2023) [30] | China (37 studies) | 37 included articles N = 8190 patients Cross-sectionnal (n = 36) Secondary analysis (n = 1) | Social support | Family Friend Other | NR (not reported) | Social support | High |
Luo et al. (2024) [31] | China (11 studies) UK (9 studies) Australia (8 studies) US (8 studies) Netherlands (4 studies) Sweden (2 studies) Canada (2 studies) Italy (1 study) New Zealand (1 study) Norway (1 study) Singapore (1 study) Spain (1 study) South Korea (1 study) | 50 included articles N = 6566 colorectal cancer patients Quantitative (n = 33) Qualitative (n = 15) Mix-method (n = 2) | Information needs of family, and support for family members, family relationships, family worries, fertility concerns, and concerns for family future. Need for help with experience of social isolation, inefficient social support, and concerns of social relationship. Problems with sexuality, sexual dysfunction and sexual relationships. Employment issues Need for help to provide information about CRC (e.g., diagnosis, treatment, follow-up, knowledge of self-care and health promotion), reliable and various information, resource, and support with preferences in information (e.g., updated, understandable or personalized information). Need for help with better coordination among healthcare professionals, better communication between patients and clinicians, and satisfaction with care | Family-related Social or relationship Caregiver/Practicionner Healthcare professionnal | survivors and their spouses feel embarrassed to discuss sexuality | Patient-reported outcomes (distress, anxiety, depression, and quality of life) Family support Sexual healthcare (healthcare professionals, companions and patients) Peer Support group Interventions | High |
McGeechan et al. (2022) [32] | US (16 studies) UK (10 studies) Canada (4 studies) Australia (4 studies) Netherlands (3 studies) Sweden (2 studies) Iran (2 studies) Norway (1 study) Singapore (1 study) China (1 study) Hong Kong (1 study) Ireland (1 study) Multi-countries (1 study) | 47 included articles N = 786 patients colorectal cancer Qualitatives (n = 46) Secondary analysis (n = 1) | Social support | Work | Return ton work can be challenging (physical limitations, loss of stamina, anxiety) | Supportive colleagues and employers Recognition that physical limitations may necessitate a revaluation of what is feasibly possible for patients to carry out | Moderate |
Mistchke (2008) [33] | NR | 48 articles included NR Patients Research studies (n = 37) Theoretical articles (n = 11) | Experience of couples Family Family members’ fear Social support | Family interaction | Dysfunctional family Loss of mother daughter relationship | Quality of family interaction | Low |
Neves et al. (2023) [34] | US (11 studies) Ireland (1 study) China (1 study) Belgium (1 study) Australia (1 study) Canada (1 study) | 16 included articles N = 1896 caregivers Cross-sectionnal (n = 10) Qualitatives (n = 4) Longitudinal (n = 2) | Hypervigilant Lack of acces to services or supports Readjusting socially Social constraints Intolerance of uncertainty Distress (anxiety, suicidal thought, trying to suppress how they felt) | Family (parents of AYA) Married mother | Lack of psychological support Quality of parent-child-relationship Social constraints (i.e., more difficulty disclosing negative thoughts, concerns, and feelings to others) | Watching out for physical and emotional changes and symptoms, seeking medical attention when symptoms appeared, asking how their child was feeling) Information Making lifestyle changes Talking about their concerns Praying Taking it day by day | Moderate |
O’Rourke et al. (2021) [35] | USA (12 studies) UK (3 studies) Ireland (1 study) Netherlands (1 study) China (1 study) Taiwan (1 study) | 19 included articles N = 2887 patients with different cancer Cross-sectional (n = 11) Longitudinal (n = 8) | Partners Caregivers Ethnicity Emotional distress Interpersonal factors Social support and conselling (coping strategies) | Partners Caregivers Family members Interpersonal factors | Distress Unsupportive partners Social constraints Loneliness Relationship quality Spouse negative affect | Quality of life Coping strategies Medical appointments Relationship quality Communication | High |
Schmid-Büchi et al. (2008) [36] | US (9 studies) Australia (7 studies) UK (3 studies) Canada (1 study) | 20 included articles N = 3014 patients with different cancer Cross-sectional (n = 12) Qualitatives (n = 3) Quantitatives (n = 3) Longitudinal (n = 1) Focus group (n = 1) | Coping (informal coping style: seeking or not seeking information) Information Post-traumatic growth Social support Felt down | Partners Friends | Women with newly-diagnosed breast cancer and adjuvant therapy experienced greater role limitations and impairment in their social functioning than women with stable disease Sexuality Overcoming barriers in obtaining health information | Partners have a mutual influence on one another Relationship improved | Moderate |
Schubach et al. (2024) [37] | USA (7 studies) UK (3 studies) Netherlands (2 studies) Poland (2 studies) China (2 studies) Greece (1 study) South Korea (1 study) Japan (1 study) Canada (1 study) Ireland (1 study) | 21 included articles N = 3654 participants Qualitative studies (n = 2) Cross-sectional (n = 16) Mixed methods (n = 3) | Information Sexual well-being Needing assistance making life decision (treatment decision, potential support they may require during the treatment phase) Emotional coping Financial support (loss of work hours) Sexual intercourse Perceived loss of intimacy Support Spiritual needs (coping) | Clinicians (urologist) Healthcare professionnals Family (Partners) Work Church community | Denial, avoidance of the situation Urinary symptoms affected ability to socialise with family and friends Perceived loss of intimacy Difficulty to initiate the conversation about sexuality Isolation They would have liked a discussion and explanation of the findings immediately after their procedure, which did not always happen Lack of information Delay in waiting for their procedures | Active coping, acceptance of their condition and using sense of humour Sharing their sexual concerns with their partners was beneficial Family and support Subsequent follow-up consultation They reported that they would like to be involved in making their treatment decisions regarding when they will have their follow-up cystoscopy; other participants were happy to leave this to the urologist Call with the treating physician | High |
Simard et al. (2013) [38] | USA (70 studies) UK (12 studies) Germany (10 studies) Australia (7 studies) Canada (7 studies) International (6 studies) Netherlands (5 studies) South Korea (2 studies) Iran (2 studies) Italy (1 study) New Zealand (1 study) Denmark (1 study) Norway (1 study) Taïwan (1 study) China (1 study) France (1 study) Japan (1 study) Thaïland (1 study) | 130 included articles N = 46,487 participants Cross-sectional (n = 89) Longitudinal (n = 30) RCT (n = 7) Pilot study (n = 2) Mixed design (n = 2) | Marital status (Married of living with a partner) Had children Income Employment Ethnicity (non-white) Rural Appalachian Sexual problems Complementary alternative medecine use Healthcare consultation and health behaviour Healthcare satisfaction Distress Social support Self-efficacy Family functionning Meaning of illness Religiosity/spirituality Role functioning Social functioning Cognitive functioning Unmet Needs | Family Work Caregiver Alternative medicine Spiritual/Religious | Marital status (Married of living with a partner) Had Children Income Employment Ethnicity Sexual problems Complementary alternative medecine use Healthcare consultation and health behaviour Distress Unmet needs | Marital status (Married of living with a partner) Employment Healthcare satisfaction Social support Self-efficacy Social functioning Family functioning Cognitive functioning Religiosity/spirituality Beliefs about consequences of disease Reflection/Relaxation Coping and interpersonal styles of coping Positive meaning to the illness | High |
Vivar et al. (2009) [39] | USA (35 studies) UK (8 studies) Canada (2 studies) Thaïland (2 studies) New-zealand (1 study) Japan (1 study) Singapore (1 study) Spain (1 study) Netherlands (1 study) | 52 included articles N = 5672 patients Quantitative studies (n = 35) Review (n = 9) Qualitative review (n = 8) | Minor physical symptoms Medical follow-up Long term survivors Social support | Family Caregivers Partners | Dealing with the diagnosis of recurrent cancer Living with uncertainty Facing treatment again | Medical follow-up Social support Quality with partners | Moderate |
Webb et al. (2023) [40] | USA (20 studies) Germany (11 studies) Taiwan (3 studies) Ireland (3 studies) China (2 studies) Canada (2 studies) UK (1 study) Netherlands (1 study) Turkey (1 study) Australia (1 study) | 45 included articles N = 6172 caregivers Cross-sectionnal (n = 37) Longitudinal (n = 5) Psychometric scale evaluation (n = 2) RCT (n = 1) | Caregivers Dyadic relation between caregivers and survivors Protective role of caregivers | Caregivers | Dyadic relationship Avoidance of talking about distressing issues, like FCR | Understanding and treating FCR among caregivers | High |
Williams et al. (2021) [41] | Australie (3 studies) USA (2 studies) Canada (2 studies) Germany (2 studies) Iran (1 study) Netherlands (1 study) | 11 included articles N = 3151 participants Cross-sectionnal (n = 5) RCT (n = 4) Longitudinal (n = 2) | Higher healthcare satisfaction Higher healthcare usage Primary care appointments when high FCR FCR predicts visits the number of visits made to psychologists, dietitians and other allied care providers Maladaptive coping | Alternative medecine Spiritual/Religious | Institutional healthcare costs Inadequate institutional resources Maladaptive coping | CBT Care of patients | High |
Yang et al. (2019) [2] | USA (9 studies) Germany (2 studies) Canada (2 studies) Netherlands (2 studies) Sweden (1 study) Finland (1 study) | 17 included articles N = 4192 patients Cross-sectional (n = 14) Cross-sectional and follow-up studies (n = 3) | Being employed Struggle spirituality Psychological distress Social functioning | Work Spirituality | Being employed Type of cancer Struggle spirituality Psychological distress Social functioning | Counselors Religious peers Support groups Clinical psychologists AYA oncology/survivorship | High |
Item Number of Checklist | ||||||||||||
---|---|---|---|---|---|---|---|---|---|---|---|---|
1 | 2 | 3 | 4 | 5 | 6 | 7 | 8 | 9 | 10 | 11 | Score | |
Anderson et al. (2021) [21] | Y | Y | Y | Y | Y | U | Y | Y | U | U | Y | 8 |
Bamidele et al. (2022) [22] | Y | Y | Y | Y | Y | Y | Y | Y | NA | Y | U | 9 |
Crist and Grunfeld (2013) [23] | Y | Y | Y | Y | Y | Y | U | Y | N | N | N | 7 |
Dawson et al. (2016) [24] | Y | U | Y | Y | N | N | N | U | NA | Y | Y | 5 |
Deckx et al. (2021) [14] | Y | Y | Y | Y | Y | Y | Y | Y | N | Y | Y | 10 |
Gormley et al. (2022) [25] | Y | Y | Y | Y | Y | Y | Y | Y | N | Y | Y | 10 |
Hampton et al. (2024) [26] | Y | Y | Y | Y | Y | Y | Y | Y | N | Y | U | 9 |
Koch et al. (2013) [3] | Y | Y | Y | Y | N | N | Y | Y | N | Y | U | 7 |
Lavery and O’Hea (2010) [27] | N | N | U | Y | N | U | N | N | N | U | Y | 2 |
Lisy et al. (2019) [28] | Y | Y | Y | Y | Y | U | U | Y | N | N | Y | 7 |
Liu et al. (2019) [29] | Y | Y | Y | Y | Y | Y | U | Y | N | N | Y | 8 |
Lu et al. (2023) [30] | Y | Y | Y | Y | Y | Y | Y | Y | Y | U | Y | 10 |
Luo et al. (2024) [31] | Y | Y | Y | Y | Y | Y | Y | Y | N | Y | N | 9 |
McGeechan et al. (2022) [32] | Y | Y | Y | Y | U | Y | Y | Y | NA | N | Y | 8 |
Mistchke (2008) [33] | U | Y | U | Y | N | N | N | U | N | N | Y | 3 |
Neves et al. (2023) [34] | Y | Y | Y | Y | Y | N | Y | Y | N | N | Y | 8 |
O’Rourke et al. (2021) [35] | Y | Y | Y | Y | Y | Y | Y | Y | N | Y | Y | 10 |
Schmid-Büchi et al. (2008) [36] | Y | Y | U | Y | Y | N | N | N | N | Y | Y | 6 |
Schubach et al. (2024) [37] | Y | Y | Y | Y | Y | U | Y | Y | N | Y | Y | 9 |
Simard et al. (2013) [38] | Y | Y | Y | Y | Y | Y | Y | Y | N | U | Y | 9 |
Vivar et al. (2009) [39] | Y | Y | N | Y | Y | N | N | Y | N | Y | Y | 7 |
Webb et al. (2023) [40] | Y | Y | Y | Y | Y | Y | Y | Y | Y | Y | Y | 11 |
Williams et al. (2021) [41] | Y | Y | Y | Y | Y | Y | U | Y | N | Y | Y | 9 |
Yang et al. (2019) [2] | Y | Y | Y | Y | Y | Y | Y | Y | N | Y | U | 9 |
Database | Records | After Duplicates | Removed by Titles and Abstracts | Reports Sought for Retrieval | Removed by Eligibility Criteria | Studies Included in the Review |
---|---|---|---|---|---|---|
PubMED | 366 | 29 removed 337 left | 265 removed 72 left | 3 not retrieved 69 left |
| N = 15 |
CINAHL | 2192 | 175 removed 2017 left | 1995 removed 22 left | 1 not retrieved 21 left |
| N = 2 |
PsycINFO | 87 | 5 removed 82 left | 41 removed 41 left | 1 not retrieved 40 left |
| N = 4 |
SocINDEX | 337 | 7 removed 330 left | 280 removed 50 left |
| N = 2 | |
PsycArticles | 278 | 25 removed 253 left | 162 removed 91 left |
| N = 0 | |
Business Source Premier | 399 | 16 removed 383 left | 343 removed 40 left |
| N = 0 | |
Grey literature and Citation searching | 3 | 0 removed 3 left | 0 removed 3 left |
| N = 1 | |
Total | N = 3659 | N = 3402 | N = 316 | N = 311 | N= 24 | N = 24 |
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© 2024 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
Share and Cite
Caumeil, B.; Bazine, N.; Maugendre, A.; Calvin, S. Ecosystem Barriers and Facilitators Linked to the Fear of Cancer Recurrence: An Umbrella Review. Int. J. Environ. Res. Public Health 2024, 21, 1041. https://doi.org/10.3390/ijerph21081041
Caumeil B, Bazine N, Maugendre A, Calvin S. Ecosystem Barriers and Facilitators Linked to the Fear of Cancer Recurrence: An Umbrella Review. International Journal of Environmental Research and Public Health. 2024; 21(8):1041. https://doi.org/10.3390/ijerph21081041
Chicago/Turabian StyleCaumeil, Benjamin, Nicolas Bazine, Axel Maugendre, and Sarah Calvin. 2024. "Ecosystem Barriers and Facilitators Linked to the Fear of Cancer Recurrence: An Umbrella Review" International Journal of Environmental Research and Public Health 21, no. 8: 1041. https://doi.org/10.3390/ijerph21081041
APA StyleCaumeil, B., Bazine, N., Maugendre, A., & Calvin, S. (2024). Ecosystem Barriers and Facilitators Linked to the Fear of Cancer Recurrence: An Umbrella Review. International Journal of Environmental Research and Public Health, 21(8), 1041. https://doi.org/10.3390/ijerph21081041