Access the full text.
Sign up today, get DeepDyve free for 14 days.
Loading next page...
/lp/springer-journals/what-is-the-evidence-behind-cancer-care-reviews-a-primary-care-cancer-qwnklIVl59
References
References for this paper are not available at this time. We will be adding them shortly, thank you for your patience.
- Publisher
- Springer Journals
- Copyright
- Copyright © The Author(s) 2022
- ISSN
- 1932-2259
- eISSN
- 1932-2267
- DOI
- 10.1007/s11764-022-01251-7
- Publisher site
- See Article on Publisher Site
Abstract
Purpose A “cancer care review” (CCR) is a conversation between a patient recently diagnosed with cancer and primary care practitioner soon after a diagnosis of cancer in the UK. This scoping review aimed to identify: methodology and validated outcome measures used to evaluate CCRs, the impact of CCRs on quality of life or symptoms, and the views of patients, their carers and healthcare professionals on CCRs. Methods A scoping review was performed and five databases (MEDLINE, Embase, PsychINFO, Scopus, Web of Science, Google Scholar) were searched systematically from January 2000 to March 2022. Results Of 4133 articles, ten met the inclusion criteria. These included surveys, qualitative research on stakeholders’ views and a small study evaluating group consultation CCRs. There were no studies on methodology to evaluate CCRs or the impact of CCRs on patient quality of life or symptoms. Some primary care professionals felt CCRs were a tick-box exercise, and that they had inadequate time to deliver care, compounded by inadequate primary-secondary care coordination and lack of expertise which was echoed by patients. Interviews with patients found few recalled CCRs and those that recalled CCRs did, did not find them particularly helpful. Partners of patients would welcome CCRs to raise personal health concerns and remain updated on patient care. Conclusions Further studies should identify the role that stakeholders believe they should have in CCRs, improve care coordination between primary care and secondary care and how to support caregivers. Implications for Cancer Survivors There is currently insufficient evidence to support the use of CCRs in general practice. Keywords Living with and beyond cancer · Cancer survivorship · Cancer care reviews · Cancer · Primary care · Scoping review Introduction will receive a diagnosis of cancer in their lifetime; however, nearly four out of ten will not die from it [5]. Whilst survival Cancer is the second leading cause of death, approximately has doubled over the last 40 years [6], in the UK, the number accounting for one in six global deaths [1]. The burden of of people who are living with and beyond cancer is set to cancer is set to increase from 19.3 million cases in 2020 to increase from 2.5 million in 2015 to 4 million to 2030 [7]. 28.4 million cases in 2040 worldwide[2] with similar pat- Macmillan, the British cancer support charity, alongside NHS terns seen in disability adjusted life years (DALYs) [3]. In the commissioners have introduced several initiatives to provide United Kingdom (UK), one in two people [4] born after 1960 care for those who are living with and beyond cancer. These initiatives fall under the umbrella term of ‘personalised care for people living with cancer’ [8] and include the following: * Dipesh P. Gopal holistic needs assessments, cancer care reviews and treatment d.gopal@qmul.ac.uk summaries (see Fig. 1). After diagnosis a one-off discussion with a primary care professional, such as a practice nurse or Centre for Primary Care, Wolfson Institute of Population Health, Barts and the London School of Medicine general practitioner (GP) should take place using a template and Dentistry, Queen Mary University of London, London, called the cancer care review (CCR). After treatment has England finished in secondary care, a summary of treatment is sent School of Nursing and Midwifery, Institute of Clinical to primary care and the patient: treatment summary. Finally, Sciences, University of Birmingham, Birmingham, UK Vol.:(0123456789) 1 3 Journal of Cancer Survivorship Cancer Secondary care Primary care treatment team make a clinician endsand cancer suspects discharge to diagnosis and cancer* primary care start treatment** Cancer Treatment Care summary Review Holistic NeedsAssessments Fig. 1 Schematic showing the timing of care plans alongside the tim- must be performed within 12 months of a diagnosis of cancer. A ing of cancer treatment. Holistic needs assessments (HNAs) occur treatment summary is given at the end of treatment in secondary soon after a cancer diagnosis and close to the end of treatment often care when the patient is discharged to primary care. *The patient is in secondary care. The cancer care review (CCR) is performed by referred by the GP to be seen by a secondary care clinician within a primary care clinician within 6 months of a diagnosis of cancer. 2 weeks. **Treatment must start within 2 months (62 days) from the 6 months is the time relevant to cited studies but since 2020 CCRs date that the urgent referral is received from primary care there is support at health and well-being events in person more important that what is implemented. Treatment sum- pre-COVID, and online. maries, evaluated from mostly cross-sectional studies, were Within the UK, soon after a diagnosis of cancer, a person associated with greater patient understanding and better receives a holistic needs assessment (HNAs) [9] and a care perceived care quality [14]. However, there were no studies plan through an oncology nurse in a secondary care set- evaluating the impact on patient outcomes. A meta-analysis ting. This helps identify patients’ concerns and signposts of randomised controlled trials of survivorship care plans the patient to the appropriate supportive resources. Whilst found that whilst they were acceptable to patients there was HNAs are typically initiated in secondary care, there is pri- no detectable impact on patient reported outcomes [15]. mary care support using a cancer care review (CCR) [10]. Despite evaluation of care plans and assessments globally Cancer care reviews were introduced in the UK in 2003[11]. but there has been no formal evaluation of CCRs. A scoping These aim to help patients consolidate their understanding review methodology was chosen over a systematic review about their diagnosis, and signpost them to support includ- methodology given the heterogeneity in CCR research to ing state benefits and preventative advice—such as smoking identify the breadth of literature on cancer care reviews [16]. cessation. These are performed within 6–12 months after a For adults who are living with and beyond cancer, this scop- diagnosis of cancer as a single intervention by a member ing review aimed to answer the following research questions: of the primary care team, such as the general practitioner (GP) or practice nurse. Before 2020, CCRs were completed 1. What methodology and validated outcomes has been before 6 months after a cancer diagnosis, likely when many used to evaluate cancer care reviews? patients may be undergoing cancer treatment. However, 2. What is the evidence that cancer care reviews improve recent 2021/2022 guidance suggests that CCRs can be com- quality of life and patient symptoms? pleted up to 12 months after a cancer diagnosis, after which 3. What are the views of patients, their carers and health- many patients may have completed cancer treatment [12]. care professionals on cancer care reviews? In recent years, there have been review articles evaluating similar care assessments and plans such as holistic needs assessments [13], treatment summaries [14] and survivor- Methods ship care plans [15]. A systematic review of HNAs sug- gested they had mixed impacts on patient outcomes such as A scoping review protocol was produced and reviewed by mood and fatigue [13]. The authors concluded that the way the team. The protocol was published online: https:// osf. io/ the HNA is implemented along with the downstream care is xrpbt/. The methodology of this scoping review is based on 1 3 Journal of Cancer Survivorship work by Arksey and O’Malley [17] and the more recent JBI care reviews were introduced into the UK in 2003 [11]. For- guidance [18] which is based on Tricco and colleagues [19] ward citation, meaning looking at the papers that had cited and existing PRISMA guideline for scoping reviews [20]. the existing paper, and backward citation, meaning looking The methodology includes identifying the research question, at the references cited within a paper, were used to ensure identifying relevant studies, study selection, charting the inclusion of all relevant studies. data collating, summarizing and reporting the results [21]. All studies were downloaded as Endnote files from their The population, concept of the research topic and the con- respective databases and duplicate records were removed. text such as geography or research type were defined (study The remaining records were uploaded to an online system- selection step) prior to the definition of research questions, atic review platform ‘Rayyan’ [24] and records were inde- according to scoping review guidance [19, 22]. pendently screened (DPG, TA) to identify eligible studies The population is adults who are living with and beyond based on inclusion criteria. Any conflicts were resolved cancer, a term which is generally synonymous with cancer through consensus between screening researchers and an survivor which is defined as anyone with a diagnosis as can- independent researcher (SJCT) if required. Full text of the cer regardless of their place within a disease course [23]. remaining records was independently screened (DPG, TA) The concept is cancer care reviews. The context is English and data was extracted from the studies fulfilling inclu- language primary and secondary quantitative and qualita- sion criteria. The same procedures for conflict resolution tive research in primary and secondary healthcare settings, as in title and abstract screening were followed for full text as well as reports, analysis or discussion articles and letters. screening. Conference abstracts were excluded. Searches were limited to English language since CCRs originated in the UK. Data extraction MEDLINE, SCOPUS, PsychINFO, EMBASE, Web of Science and Google Scholar were searched using the search The results were extracted by a single researcher (DPG) into strategy shown in Fig. 2 from January 1, 2000, until March a data chart which was developed iteratively into the fol- 3, 2022. The year 2000 was chosen as a cut-off, since cancer lowing categories: lead author name, year of publication, Fig. 2 Search strategy for this Cancer care reviews scoping review 1. “cancer care review” Living with and beyond cancer 2. “cancer survivor” 3. “Long-Term Cancer Survivor” 4. “long term cancer survivor” 5. "cancer survivorship" 6. "living with and beyond cancer" 7. “cancer recovery” 8. (2 OR 3 OR 4 OR 5 OR 6 OR 7) Care planning 9. "care plan" 10. "care review" 11. "follow-up care" 12. “follow up care" 13. "survivor care plan" 14. “survivor care” 15. “care need” 16. “care goal” 17.“goals of care” 18.“nursing care plan” 19.“patient care planning” 20. “aftercare” 21. “after care” 22. “post-active treatment” 23. “post active treatment” 24. “treatment summary” 25. “treatment summaries” 26.“holistic needs” 27.“holistic needs assessment” 28.“needs assessment” 29.“distress thermometer” 30.“problem list” 31. “concerns checklist” 32.(9 OR 10 OR 11 OR 12 OR 13 OR 14 OR 15 OR 16 OR 17 OR 18 OR 19 OR 20 OR 21 OR 22 OR 23 OR 24 OR 25 OR 26 OR 27 OR 28 OR 29 OR 30 OR 31) 33.1 OR (8 AND 32) 1 3 Journal of Cancer Survivorship year of data collection, study location, study design, type There were five qualitative studies [11, 27, 30, 31, 33], of subjects involved, sample size, mean age, % female, % four surveys [26, 28, 32, 34] and one letter to the editor [29] minority ethnic, % disability, featured cancer types, study which identified views of CCRs from patients (n = 3) [11, findings, study limitations, CCR relevant findings. Data 29, 30, 33], their partners who were sometimes also carers extraction was independently verified by another researcher of patients (n = 1) [27], and healthcare professionals(n = 5) (SJCT) and there was 100% agreement. Data charting could [11, 26, 28, 29, 31–33], including primary care professionals not be calibrated due to novel study methodology and study (see Table 1). There was one study measuring the impact of heterogeneity. Quality appraisal and/or risk of bias assess- CCRs performed via group consultations [34]. There were ments were not conducted as they are deemed unnecessary no studies identifying validated outcome measures to evalu- for scoping reviews [18]. The data was synthesised using the ate CCRs, the impact of CCRs on quality of life (patients or patterns, advances, gaps, evidence for practice and research their carers or spouses) or patients’ symptoms. recommendations framework [25]. In surveys[26, 28] involving healthcare staff, 25–38% respondents were female whilst gender was not reported in an interview study[31], a focus group study[11], or a Results trial [34] involving healthcare professionals. Fifty percent of patients interviewed for one study were female[11] and Database searches retrieved 7372 records and 4133 records another study only included participants who had endome- remained after exclusion of duplicates. Following screening trial cancer[30]. An interview study[27] involving partners by title and abstract, inclusion and exclusion criteria were of patients had 68% female participants. No studies reported applied to 103 full text articles. Of these articles, ten articles data on disability and some studies[11, 26, 28, 31–34] did [11, 26–34] fulfilled inclusion criteria, of which one was not report ethnicity. In those that did report this[27, 30], identified through back citation (see Fig. 3). Fig. 3 PRISMA flow diagram showing records included through systematic search of the literature 1 3 Journal of Cancer Survivorship 1 3 Table 1 Summary table of included studies in scoping review on cancer care reviews (CCRs). These included online surveys, interviews and focus groups. n/a, not applicable. None of the papers reported disability. GPs, general practitioners Author, year of Year of data Location Study design Data collection Subjects Key findings relevant publication collection to CCRs Type Sample size Mean age (± SD) Female (%) Ethnic minority Cancer types (%) Adams et al. 2011 2009–2010 Thames Valley, Qualitative Focus groups – Primary care 71 (31 GPs, 1 Professionals: Professionals: Professionals: Various—breast, Practice staff were unsure [11] England; UK face-to-face healthcare GP trainee, 1 unknown unknown unknown prostate, of the exact role of professionals medical student, colorectal, head primary care in long- 13 GP nurses, 2 and neck, lung, term cancer care: some district nurses, melanoma, thought that primary 6 practice testicular, care should provide a managers, 1 endometrial, supportive role whilst phlebotomist, uterine, pelvic, others felt that that 1 healthcare Hodgkin’s, their role should only assistant, 15 non-Hodgkin’s, be during the palliative admin bladder, renal phase. Patients noted that primary care staff Interviews, face- Patients 38 Patients mostly Patients: 50% Patients: 0% failed to acknowledge to-face; aged 50–70 their cancer diagnosis: (14/38) such an acknowledge- and > 70 ment would have (16/38) been beneficial. Some patients were unsure whether primary care had sufficient expertise for cancer care and felt that lack of coordina- tion between primary and secondary care negatively impaired continuity of care. Adams et al. 2012 2009–2010 Thames Valley, Qualitative Interviews, face- Partners of 22 Mostly aged 68% 5% Various—prostate, Partners of patients [27] England; UK to-face patients 50–70 (14/22) colorectal, head encountered several and neck, lung, challenges when melanoma, caring for patients breast, Hodg- with cancer. One kin’s lymphoma, example was providing testicular, nursing care after gynaecological, hospital discharge/ bladder procedure without the appropriate expertise or experience. They encountered anxiety about providing future care and found the provision of emotional support stressful, nega- tively impacting their personal relationships. Partners felt unable to voice concerns about the impact of caring on their own health and well-being. Journal of Cancer Survivorship 1 3 Table 1 (continued) Author, year of Year of data Location Study design Data collection Subjects Key findings relevant publication collection to CCRs Type Sample size Mean age (± SD) Female (%) Ethnic minority Cancer types (%) Kendall et al. 2013 Unknown England, Scotland; Qualitative Interviews, face- Primary care 29 (27 GPs, 2 GP Unknown Unknown Unknown Various—breast, This feasibility study [33] UK to-face healthcare nurses) prostate, tested the implementa- professionals colorectal, lung, tion of a structured haematological, template for cancer Patients 16 66 43% unknown bladder, skin care reviews called Cancer Ongoing Review Document (CORD). GPs and practice nurses felt that the CORD template needed to be better integrated into the electronic system. Some found the prompts helpful, but others thought it made consultations ‘tick list’. Few patients could remember the proactive invitation for the consultation, or a special document being filled out. Members of the lay advisory group noted that an explana- tion of the consultation or a printout of the completed document would be helpful. A review of the medical notes identified that CCRs were carried out 3 months after diagno- sis and GPs carried out the majority of CCRs. Most CCRs were car- ried out in clinic (GPs 50%, GP nurses 80%) whilst the remainder of CCRs were carried out on the telephone and rarely during home visits. Journal of Cancer Survivorship ff 1 3 Table 1 (continued) Author, year of Year of data Location Study design Data collection Subjects Key findings relevant publication collection to CCRs Type Sample size Mean age (± SD) Female (%) Ethnic minority Cancer types (%) Williamson et al. 2015 England, Scotland, Qualitative Interviews, Primary care 21 (total) Unknown Unknown Unknown n/a Professionals and 2020 [31] Wales; UK telephone/face- and oncology clinicians thought to-face healthcare that long-term cancer professionals; follow-up in second- managerial staff ary care was costly and unsustainable. - Primary care 10 (2 GPs, 5 They noted a lack of sta oncology coordination between nurses, 3 primary care and oncologists) secondary care services and variable amounts - Managerial staff 8 (6 nurses, 2 of self-management managers) support for patients. Interview participants - Clinical and 3 (2 GPs/commis- identified the chal- managerial staff sioners lenges of implementing 1 nurse/commis- the ‘Recovery Package’ sioner) and the need for better use of technology and evidence base for sur- vivorship initiatives. Beaver et al. 2020 2018 London/ Qualitative Interviews, face- Patients 17 59.4 ± 10.8 100% 6% Endometrial Patients found hospital [30] Preston England; to-face cancer follow-up helpful UK initially for reassurance but inconvenient when travelling, parking, time taken especially if there were no clinical problems apparent. Self-management was empowering with the right support such as looking out for symptoms of recur- rence. Patients were often unable to recall certain aspects of care planning. Only 2/17 received a treatment summary; 6/17 remem- bered information on health and well-being events; all were unsure about the contents of a CCR. Dilley and Can n/a Chelmsford, n/a Letter to editor Individual opinion n/a Unknown n/a n/a n/a As a GP and patient, the 2019 [29] England; UK of healthcare author believes that professional/ CCRs and their associ- patient ated funding for their implementation could facilitate continuity of care for patients. Journal of Cancer Survivorship 1 3 Table 1 (continued) Author, year of Year of data Location Study design Data collection Subjects Key findings relevant publication collection to CCRs Type Sample size Mean age (± SD) Female (%) Ethnic minority Cancer types (%) Watson et al. 2010 Unknown England; UK Quantitative Online survey Primary care (not 300 Unknown 38% Unknown n/a Most primary care [26] & audit of 65 specified) and professionals offered oncology clinic oncologists CCRs and conducted letters CCRs themselves. 40% of staff found CCRs helpful whilst 60% found CCRs helpful for patients. 67% of primary care staff were dissatisfied with communication with secondary care and dis- satisfied about access, secondary care advice and appointments. Most oncologists communicated clear information given about treatment and follow-up but less often the long-term impact of cancer such as late effects or symptoms of recurrence which pri- mary care staff felt was missing from commu- nication. This finding was corroborated by the oncology discharge letter audit. Journal of Cancer Survivorship 1 3 Table 1 (continued) Author, year of Year of data Location Study design Data collection Subjects Key findings relevant publication collection to CCRs Type Sample size Mean age (± SD) Female (%) Ethnic minority Cancer types (%) Walter et al. 2015 2014 UK Quantitative Online survey Primary care 500 Unknown 25% Unknown n/a 50% of GPs reported [28] healthcare receiving a detailed professionals cancer treatment (all GPs) summary, details of ongoing care from the hospital, or details of ongoing care to be provided by the GP. 16–21% of GPs received information on late effects from secondary care, and the appropriate time to refer to secondary care in case of recurrence. 76% of GPs felt cancer treatment summaries and survivorship care plans would improve their ability to provide care. As well as this, 77–81% of GPs believed that primary and secondary care should be jointly responsible for bone and cardiovascular health for people liv- ing with and beyond cancer. 50% of GPs reported having received previous training on the care of people living with and beyond cancer and most GPs were keen to learn more about providing cancer care. Journal of Cancer Survivorship 1 3 Table 1 (continued) Author, year of Year of data Location Study design Data collection Subjects Key findings relevant publication collection to CCRs Type Sample size Mean age (± SD) Female (%) Ethnic minority Cancer types (%) Dyer and 2018 Southwest Lon- Quantitative Online survey Primary care 123 Unknown Unknown Unknown n/a The survey of practice Dewhurst 2020 don, England; healthcare pro- nurses showed 60% [32] UK fessionals (all were clear about their GP nurses) role in supporting people with cancer, but 1 in 6 were confident about conducting CCRs. 43% of respond- ents were unsure or did not understand the role of CCRs, Practice nurses were more con- fident about discussing hormone treatment and surgery but less confident about immu- notherapy. Respondents were more confident supporting patients with lifestyle advice as well as physical and psychological issues. They were less confi- dent about discussing sexual dysfunction, and signs of recurrence. More than 70% of practice nurses had not received cancer specific training citing barriers such as lack of time and distance to training locations. Hodgson 2020 Unknown Lancaster, Eng- Quantitative Unblinded single Patients 6 unknown unknown unknown unknown CCRs for 6 people living [34] land; UK arm trial with and beyond cancer were conducted via 2 group consultations performed across 3 months. There was a decrease in physical, emotional, lifestyle and information needs by 58% before the first and after the second group consultation as meas- ured by the number of needs through holistic needs assessments. Patients and clinicians were satisfied with this format of consulta- tion, but this was not measured formally. Journal of Cancer Survivorship 5–6% of patients or partners were from ethnic minority Patients were unsure about the right time for a CCR groups. with some preferring a review with primary care soon after diagnosis and others preferring contact at the end of treat- Patient views on cancer care reviews ment or several reviews during cancer treatment. A proac- tive approach to cancer care via a CCR would legitimise This data was sourced from interviews with patients in GP concerns to seek help in primary care and patients men- practices with various cancer types within 6 years of diag- tioned several things that should be included in primary care nosis (n = 38) [11] and within 3 months of diagnosis (n = 16) cancer-specific reviews, but which are not formally part of [33], interviews with patients (n = 17) from gynaecology CCRs. These included the following: illness acknowledge- outpatient clinics diagnosed with stage I endometrial cancer ment, an explanation of cancer in lay terms, support for chil- within the last year [30], and a letter from a GP who had dren, emotional and psychological support for themselves been diagnosed with cancer [29]. Adams and colleagues[11] and, information about the symptoms of recurrence, travel conducted interviews with patients within three years of their insurance, and local support groups. cancer diagnosis, where just 5% (n = 2) recalled a CCR and Patients recognised that barriers to providing cancer care, more than half (n = 20) could not recall any detailed discus- which may include CCRs, in GP practices may arise from sion with their primary care team. This was echoed in the lack of coordination between primary care and secondary study by Kendall et al. [33] where few patients could not care, with some secondary care professionals denigrat- remember either having a specific proactive cancer related ing the value of GPs in cancer care: “I fear that there’s no appointment or a CCR. A more recent qualitative inter- consistency between specialists and GPs, because I like to view study [30] conducted with patients with stage I endo- feel as though I trust my GP, but when they start bickering metrial cancer indicated that some were unsure of what a about ‘oh your GP doesn’t know anything’, you can be easily CCR involved, and the difference compared to a routine GP swayed, and you say, ‘should I be talking to my GP about appointment. Only those who reported the existence of a this?’.” (37-year-old male, page e178) [11]. good relationship with a GP were positive about CCRs with Others recognised lack of time as a potential barrier some not keen to discuss their cancer diagnosis with unfamil- to providing a CCR within a 10-min consultation which iar practitioners in a supplementary appointment dedicated stopped patients raising concerns with GPs or practice to CCRs: “Well the thing is, I don’t feel comfortable with nurses about their cancer: my GP because the one I had is retired. And every time I go “Some sort of follow-up thing would be nice because to phone up now, I get somebody different. And I've built no there are things you’d like to ask because when you do come relationship up with them. They don’t know me, they don’t back here for your check-up they’re so pushed for time, you really know my condition.” (ID 11, page 6) [30]. haven’t, they obviously haven’t really got a lot of time.” A letter [29] written by a GP who had a cancer diag- (P52, 74-year-old male, page e178) [11]. nosis suggested that CCRs and their associated funding is important to provide an access route to primary care: “QOF cancer care reviews can provide a valuable doorway allow- Partner views on cancer care reviews ing patients to access this support. As a patient, I vote that they should remain.” Interviews with partners of patients (n = 22) who had been Those patients that had CCRs (n = 2) [11] did not find diagnosed with various types of cancer within the last them particularly helpful as primary care staff seemed una- 3 years were the only data source. Most partners of patients ware of the patient’s history and ongoing cancer treatment, [27] (n = 17, 77%) who had various types of cancer were in which may be in part not reading clinical notes, and a gen- favour of having their own cancer care review, designated eral lack of awareness of novel cancer treatments: review time, to discuss symptoms of recurrence for the “They invited us to go and see them as a follow-up, but patient: “I’d like maybe to talk about the likelihood of it she was not aware of the operation I’d actually had, and she coming back, or him developing a different kind of cancer, was not aware what they had in fact done, and she, sitting touch wood, that would put my mind at rest…” (P155, wife, discussing with her ‘they really do that now do they?’” (P20, separate interview, page 2791) [27]. 68-year-old male, pages e176-7) [11]. Other partners thought that having a personal CCR “He hadn’t looked at the notes, it was almost like I kind appointment for themselves would allow them to stay up- of went through ‘this is what I’ve got, these are the drugs to-date with their fellow partner who was undergoing cancer I’m having’, which was … Trying to remember all those, so treatment: “Yes, that would be a good idea, yes, yes, it’s best it wasn’t really, there was no value to me at all at that point to know what’s going on, I mean if you have it first hand you frankly, it was a bit of a waste of time quite honestly.” (P16, know the governor is not giving you a load of cobblers to 36-year-old male, page e177) [11]. keep you quiet, don’t you, no, I think that would be a very 1 3 Journal of Cancer Survivorship good idea” (P1214, husband, separate interview, page 2791) colleagues [28] in a survey of 500 GPs. This was similarly [27]. reflected in focus groups with primary care teams where A dedicated appointment for a partner would provide an CCRs were completed opportunistically in person or on the opportunity to discuss their own concerns relating to their telephone [11]. There was no consensus on the optimum own health but specifically being a carer: “We’re coping timing of CCRs and very few performed CCRs at a set time OK, but given all the things I’ve read about carers, getting point. Only 17% were performing CCRs at a set time whilst stressed and all that kind of thing, it does surprise me that 5% were performing regular reviews in the study by Watson now this has been happening for 18 months, nobody has ever [26]. In the same study, 39% aspired for CCRs at different suggested that I should just have a check up, or talking to me times of the patient journey such as at diagnosis (62%), end to see if I’m caring [sic] …” (P174, wife, separate interview, of outpatient follow-up (53%) and six-monthly (60%). page 2791) [27]. Between 40 and 64% of GPs used a CCR template or struc- Partners of patients with cancer found that primary care ture [26, 28] with practice or local CCG templates being the tended to be for patients rather than for carers. This acted as most popular [28]. However, participants in focus groups [11] a perceived barrier to seeking help about their own health and interviews [33] had mixed views on the value of templates or caring needs. Others found that the confidentiality of the in CCRs with some GPs finding them a useful structure and doctor-patient relationship limited disclosure of information others thinking CCRs were a “tick-box exercise”—thereby relevant to their caring responsibility, such as when discuss- fundamentally changing the consultation structure: ing patient care at a dedicated appointment for the partner. “I don’t think it’s of any value personally, I don’t think Furthermore, partners thought that primary care profession- it’s to the patient benefit at all, I think it’s just another hoop als lacked knowledge of family roles, such as knowing the you have to jump through if you want to get paid.” (practice partner or main carer. 5, GP partner, page e179) [11]. “I do have slight anxieties about making everything so Primary care professional views on cancer care structured, I mean the ethos has always been “we’re acces- reviews sible, we’re here if you want us, if you do come in we don’t have to follow a template, we can go by your agenda, and Professional views were derived from a variety of sources: what you’re worried about”, and I have concerns about tem- a 2010 survey of 100 oncologists and 200 primary health- plates.” (practice 2, GP partner, page e179) [11]. care professionals with an audit of oncology discharge let- Some GPs and practice nurses found that filling the CCR ters [26], a 2015 survey of 500 GPs [28], a 2020 survey of documentation with the patient was mutually beneficial and 123 GP practice nurses [32], a 2011 focus group of 6 GP improved clinical practice and documentation [33]. multidisciplinary teams [11], a 2013 interview study of 29 One GP [29] who had experience of having cancer treat- primary healthcare professionals [33], and a 2020 interview ment identified a potential driver for cancer care review as study with 19 primary and secondary care clinical and mana- ticking of the financial incentive, Quality and Outcomes gerial staff[31]. Framework (QOF) box. This was corroborated by two par- ticipants of a study by Williamson [31] including healthcare Understanding of CCRs professionals, managers and commissioners interviewed, who suggested that financial incentives may support related initia- Only one survey checked understanding of the concept of tives such as holistic needs assessments which inform CCRs. CCRs and found that of those practice nurses who were Walter and colleagues [28] found that 53% of GPs found clear in supporting patients with cancer, 43% (n = 32) did CCRs useful whilst 10% did not specify in which regard. not correctly understand or were unsure about the purpose GPs who performed CCRs with a template and those who of CCRs [32]. made specific appointments were more likely (48% and 327%, respectively) to find CCRs useful compared to those How CCRs are carried out who did not use templates, or performed CCRs opportunisti- cally. GPs with specific appointments for CCRs found CCRs Survey data of GP practices and primary care staff identi- three times more useful even after adjusting for template use fied that most CCRs were performed by GPs. In a survey of compared to those that performed CCRs opportunistically. 200 GPs [26], 98% performed CCRs themselves but some Watson [26] reported 40% of primary care staff found CCRs practices reported delegating this to practice nurses (14%), useful to staff and 60% found them useful to patients. district nurses (19%), palliative care nurses and community A 2010 [26] and 2015 [28] survey showed that most GPs matrons (6%). In the same survey, just over half the GPs (> 50%) discussed psychological symptoms and support during (51%) conducted CCRs opportunistically during a consulta- CCRs. However, Watson[26] in 2010, found that in addition tion with a similar proportion (45%) reported by Walter and most GPs reviewed treatment, patient follow-up and discussed 1 3 Journal of Cancer Survivorship family needs. Walter’s [28] more recent survey found that most health compared to cardiovascular health depending on spe- GPs discussed treatment-related side effects and lifestyle. cific cancer treatment. GPs were almost 5 times (OR 4.76 However, Watson [26] in 2010 found 68% of GPs discussed [95% CI = 3.07 to 7.64], P < 0.001) more likely to consider social support, such as work and finances, compared to 36% a history of cancer when assessing bone health compared of GPs in 2015 [28]. In addition, 19% fewer GPs discussed to cardiovascular health. Most GPs were keen to undertake lifestyle or healthy behaviours in 2010 [26] compared to 2015 training in treatment-related side effects and the long-term [28]. The content of CCRs in Walter’s study [28] such as life- effects of cancer treatment. Over 77% of GPs felt that both style advice or social support was significantly related to GP primary and secondary care should jointly manage bone confidence in discussing these topics. Only a minority of GPs and cardiovascular health. Some lack of knowledge may provided information on symptoms of recurrence, familial or be attributed to a lack of training which was evident in the genetic risks of cancer, and screening requirements in Watson’s survey of practice nurses by Dyer and Dewhurst [32] who study [26]. These topics were not included in the survey by found over 70% (n = 89) had not had cancer-specific train- Walter and colleagues [28]. A 2020 survey of practice nurses ing. Conversely, 15% (n = 18) had had cancer-specific train- [32] found practice nurses were more confident in discussing ing. Barriers to accessing such training for practice nurses hormone treatment and surgery but less confident in discuss- included lack of training time and location of training [32]. ing immunotherapy. Furthermore, practice nurses were more Some GPs thought that the quality of the information confident in discussing physical and mental health problems received from secondary care did impact on their ability to as well as lifestyle advice such as smoking cessation. However, provide care during CCRs [11]: “So it’s the initial diagnosis, they were less confident at discussing long term effects such that I think generally now the information is excellent, but I as sexual dysfunction or the effect on fertility alongside signs think at 6 months or something, often the information isn’t of recurrence and the need for follow-up testing. as good, and that was I think what I read quickly, where the patients were wanting their review with us, more formal Barriers to the implementation of CCRs review.” (practice 2, GP partner, page e180) [11]. This was reflected in Watson’s survey [26] of primary Implementation of CCRs, as part of the Recovery Package, care staff which showed that 29% were satisfied with oncol- by clinicians and policymakers was noted to be difficult at ogy letters. Primary care staff noted that oncology discharge a time of ‘decreasing resources’[31]: “We’re already hav- letters omitted key parts of survivorship care such as famil- ing talks with our commissioners which are being led by ial risk of cancer, psychological and social consequences our local cancer network to look at how we can jiggle the of cancer and symptoms indicating recurrence. This was funds around really and commission the Recovery Package reflected in an audit of sixty-five discharge letters in the activity, but that would be on the proviso obviously that we same study. GPs alluded to a checklist or survivor care plan reduce the follow-up ‘cos there won’t be more money and [11, 26] containing a summary of topics to discuss with GPs we’ve got a lot more patients coming in …’” (ID 11 Lead as well as previously mentioned topics. Cancer Nurse, page 4) [31]. This allusion to a lack of time to conduct CCRs was reflected in Adams and colleagues’ paper [11]: “One of the Outcomes of CCRs things really struck me was the patients really wanted a lot of information, and to some extent I think the sort of cancer There was only one research paper which identified the care review process is probably not the place for that, I mean effect of 2 CCRs over 6 months, delivered through group I think a few good websites and information sheets or a few consultations with 6 patients at a single GP practice [34]. helplines for the patients, they could actually be more use- The group consultations showed a 58% in reduction of phys- ful, I think you could do a lot of that outside of a GP setting, ical or emotional concerns and lifestyle needs as assessed by if there was more sort of an information infrastructure that HNAs. The overall level of concern reduced by 36%. Both would be helpful.” (practice 3, GP partner, page e180) [11]. patients and clinicians reacted positively to group consulta- Other barriers to implementation of CCRs by the primary tion CCRs, but this was not formally assessed. care team included lack of knowledge in long-term cancer care [11]: “I also feel you know, I probably don’t know enough about the subject to give advice, but I think from an emotional Discussion point of view, yeah, you just sometimes you just have to listen, don’t you.” (practice 5, practice nurse, page e180) [11]. Main findings This was more evident on a survey [28] including a meas- ure of GP self-reported knowledge with 13–30% more GPs The ten studies included in this review presented views appreciative of the association of cancer treatment with bone of different stakeholders such as patients, partners of 1 3 Journal of Cancer Survivorship patients and primary care staff such as GPs through inter - Australia [38] and Canada [37] identified similar barriers views, focus groups and surveys. There was a single study to implementation, to those encountered for CCRs, with the that measured the outcomes of group consultation CCRs biggest barriers being insufficient time and healthcare pro- using holistic needs assessments, but this outcome had fessionals to carry out assessments. Other barriers included not been previously validated for CCRs both in a group lack of services to which patients could be referred to includ- or patient-clinician setting. There were no studies that ing those that were culturally sensitive, inadequate profes- identified methodology to evaluate CCRs or showed the sional training and a lack of space to ask intimate questions. effect of CCRs on patient quality of life or symptoms. Of Patient-related factors included travelling distance and cost those asked, most patients were unable to recall CCRs but [36]. A systematic review of HNAs [13] found some trials those who did recall CCRs did not find them helpful: often found benefit whilst others found no benefit on quality of life favouring a review with their usual GP compared to other and patient symptoms. Thematic analysis revealed that the GPs. Patients favoured a proactive approach of contact way that HNAs were implemented is perhaps more impor- from primary care via CCRs as it legitimised concerns tant than the implementation of HNAs themselves: HNAs as well as a more comprehensive offering of care beyond are a means to an end rather than an end in themselves. the current CCR structure. Both patients and GPs identi- For survivorship care plans (SCPs) in the USA, focus fied barriers such as lack of GP time and poor primary- groups [39] and a survey [40] with primary care practitioners secondary care coordination. The perception of lack of identified time and lack of recommendations from oncology time to conduct CCRs from patients was reciprocated by teams as barriers to implementation. Lack of knowledge of policymakers. For some patients, this perception prevented survivorship issues and lack of survivorship guidance were help-seeking behaviour towards healthcare providers. A other barriers to SCP use in clinical practice. Despite this, further barrier for GPs and practice nurses was a lack qualitative data [41] shows that SCPs improve primary care of knowledge about long term cancer care and relevant team confidence in managing cancer survivorship sequelae. resources for signposting. For GPs there was a tension A meta-analysis of SCPs [15] identified no impact on patient between having a pre-determined but fixed structure rel- outcomes which is thought to be due to lack of comparability evant to financial incentive to conduct CCRs and providing of different SCPs, the inadequate implementation of SCPs clinical care which may supersede this structure. There or ineffectiveness. was no consensus on the optimal timing of CCRs. Lastly, A survey of Canadian primary care staff [42] suggested partners of patients said that they would value a CCR for that a diagnosis and treatment summary was the most use- their own health and social concerns related to taking on ful of all discharge information but US data [43] suggested additional roles as a carer which had a physical and emo- that less than half of primary care providers surveyed actu- tional burden. Furthermore, a care review for partners ally received a treatment summary. A systematic review would provide time to stay updated with the health of their [14] revealed that treatment summaries improved patient partner who was living with and beyond cancer and avoid perceived care and treatment adherence but had no impact gatekeeping: this needs to be considered in a framework on physical or mental health. The review was limited by of confidentiality. A synthesis of the main findings, gaps observational data and no consistency in outcome reporting in the research and recommendations for further research making it difficult to draw conclusions. can be found in Table 2. SCPs are not used in the UK and there are no studies evaluating its use. Whilst treatment summaries are part of the ‘personalised care’ initiative, there are no studies evalu- Findings in the context of other studies ating their use in the UK. Most patients did not recall CCRs possibly because the The role of general practice CCR had not occurred, or that their CCR with a GP or practice nurse was not significant, compared to hospital A systematic review [44] of the views of patients and GPs on appointments at the same time. Furthermore, it is pos- the role of the GP in long-term cancer care, identified that sible that the CCRs may have been forgotten due to the patients often feel abandoned by their hospital cancer teams stress and burden of cancer treatment as well as cogni- after treatment and discharge. Many patients were unsure tive impairment in short-term or working memory related about the exact role of the GP and tended to seek care from to cancer treatment [35]. It is difficult to determine the the GP only if they had an existing relationship. Both GPs impact of CCRs and eliminate recall or attention bias with- and patients agreed that GPs should provide primary health- out validated outcome measures. care, act as a care advocate, and contact secondary care to For nurse-led cancer care assessments or holistic needs facilitate referrals for example. A separate systematic review assessments (HNAs), survey data from the UK [36, 37], [45] focussing on psychosocial care for those living with and 1 3 Journal of Cancer Survivorship beyond cancer identified that patients preferred seeing their not have clear short- or long-term changes on caregiver qual- GP for depression and anxiety. Alternatively, fear of recur- ity of life, physical or psychological health [58]. Psychoedu- rence was thought to be better managed by oncology teams. cational interventions which provide an educational compo- Barriers to better cancer care included inadequate commu- nent about cancer, in addition to components of psychosocial nication with secondary care, especially individualised care interventions can result in significant improvements [59] in planning, alongside a lack of survivorship care guidelines caregiver physical and psychological health, quality of life and training [44]. There are few cancer care training pro- and burden at 3 months as well as physical quality of life grams for primary care staff worldwide which show long- specifically at up 12 months. Despite this, interventions may term impact on clinician knowledge and patient outcomes be difficult to implement due to limited evaluation of their [46]. GPs are unsure about their role within cancer care and acceptability, adoption and feasibility [60]. A meta-analysis when to re-establish care after a cancer diagnosis and per- [61] examining the impact of electronic Health (e-Health) haps CCRs in the first 12 months after a cancer diagnosis do interventions found an improvement in caregiver symptoms act to re-establish patient contact. Lack of clear guidance is and quality of life but not in caregiver burden. The longest likely to have knock-on effects on patient experience [ 47]. of the included 7 randomised control trials (n = 326) had a Patients believed a prominent barrier to GP-delivered cancer maximum follow-up of 14 weeks [61]. care was that GPs were too busy. Perceived time constraints may negatively impact patient help-seeking behaviour and Conclusions, limitations and future studies result in unmet care needs [48]. Time and resource scarcity were also echoed as barriers to adequate care provided by There is currently insufficient evidence to support the GPs in this study. A systematic review [49] comparing pri- implementation of cancer care reviews in clinical practice. mary and secondary care as providers of survivorship care Stakeholder views identified barriers to providing CCRs as found similar quality of life and patient reported outcomes lack of time, adequate primary-secondary care coordina- from several heterogenous randomised controlled trials and tion and lack of knowledge about long-term cancer care and observational studies, with up to 5 and 15 years of follow- resources for signposting. Patients preferred a proactive care up respectively. However, primary care was associated with offering such as a CCR, but few could recall if it had taken lower costs to patients and society more widely. place. Partners of patients would value a clinical review time for their own health concerns. CCRs can be evaluated by The impact of cancer on the individual administering HNAs before and after CCRs, and comparing and on the wider family the numbers of physical and emotional concerns, lifestyle needs and total number of concerns. However, evaluation of The long-term effects of cancer are wide-ranging from the CCRs using HNAs was only implemented in a group con- commonly known physical effects such as fatigue, psycho- sultation setting. logical effects such as depression and social effects such The survey data included in this review is limited by as isolation. Another impact is unemployment directly or reporting bias and potentially selection bias as responders indirectly due to cancer and its treatment: ‘financial tox- were recruited from an online forum [26] or tended to be icity’[50]. Notably relationships with family and loved interested in research participation [28]. Walter and col- ones more broadly are important for emotional, social and leagues’ survey [28] contained more male GP participants spiritual support [51]. As well as this, the need to provide and fewer part-time trainees than expected. Survey data this support changes the nature of relationships with fam- contained no information about ethnic background [26, ily members, possibly through a combination of the cancer 28] or disability. Very few patient views of CCRs were diagnosis, financial hardship and change in intimate relation- identified and only negative experiences were noted [11]. ships [51, 52]. In a home environment, family caregivers Patient views may not have been represented in some cases adopt several roles such as symptom monitoring and assess- with a lack of people from diverse ethnic backgrounds ment, care coordination, providing physical support such as [27, 30], middle to lower socio-economic classes [30] and giving medications, and psychosocial support [53]. Family those with disabilities. One study with clinicians and poli- caregivers encounter a conflict between being caring duties cymakers was published 5 years after data collection and 6 and their own needs [54] which may explain increased car- of the 10 included studies were published before 2016 and egiver cardiovascular and psychological morbidity [55] as may not be relevant to current practice. This is because well as increased all-cause mortality [56]. Family-specific there has been significant policy changes such as use of interventions include psychological support, psychoeduca- structured templates for CCRs [10] and education for GPs tion interventions and caregiver support [57]. [62] and practice nurses [63]. The most recent 2021–22 Psychosocial interventions, namely a provision of psy- changes to CCR policy include a 3-month review soon chological and/or social support, directed at caregivers did after diagnosis and a 12-month review after completion 1 3 Journal of Cancer Survivorship 1 3 Table 2 A summary of the scoping review: clinical practice and research implications using the Pattern, Advances, Gaps, Evidence for Practice and Research recommendations (PAGER) frame- work from Bradbury-Jones et al. (2021)[24]. There was no evidence of the impact of CCRs on patient symptoms, quality of life or methodology used to evaluate CCRs therefore these were omitted from the table Pattern Advances Gaps Evidence for practice Research recommendations Patient views on CCRs Few patients recalled having a CCR There is a lack of research identify- CCRs are limited by a structure To carry out qualitative research with and those that did remember hav- ing what leads to positive and which can guide but may dictate patients about their experiences of having CCRs and how their experi- ing a CCR tended to have had a negative patient experiences of care delivery. The current CCR ence could be improved. negative experience except when having CCRs. structure may not meet patient they had a prior relationship with There has been little research con- cancer care needs. their GP. ducted shortly after a CCR when Some patients felt that GPs did not interviews might be less prone to know enough about their own can- recall bias. cer journey or cancer treatments in general. Other recognised time as a barrier to raising concerns with their primary care teams. A proactive approach to cancer care legitimised concerns but CCRs did not cover many areas such as an explanation of the diagnosis, symptoms of recurrence or details of local support services. Primary care staff views on CCRs GPs and practice nurses were There is a lack of research identify- Primary care staff need time, To carry out qualitative research with conflicted by the tick-box nature of ing ways of improving primary personnel and educational GPs and practice nurses to identify CCRs against the usefulness of the care time and personnel resources resources specific to cancer care to how CCRs are carried out, the prompts in CCR structure. locally to facilitate CCRs. Further- adequately deliver CCRs. impact of the COVID-19 pandemic Primary care team members felt more, there is a lack of research on CCRs, the role of primary care constrained by time resources, lack on improving primary-secondary in long-term cancer care and the of knowledge in long-term cancer care coordination around cancer perceived impact on patients and care and inadequate primary-sec- care at the end of discharge from their families. ondary care coordination. secondary care. To survey and interview second- ary care oncology staff about the facilitators and barriers to providing timely documentation to primary care, their ideas about the role of primary care and challenges about communicating with primary care. Caregiver views on CCRs Partners of patients wanted to have There is a lack of research identify- It is unclear how to deliver care to To carry out qualitative research with their own review time beyond the ing the acceptability and feasibil- caregivers especially in the context partners of patients with cancer CCR to keep updated with the ity of interventions to support of CCRs and encouraging a wider and wider family members about patient’s health and treatments caregivers: psychological support, approach to support patients and their supportive care needs. Further alongside discussing their own psychoeducational interventions their families would be helpful. research should identify the feasibil- health concerns and being a carer. and caregiver support both in hos- ity for healthcare professionals to pital and community settings. support these needs. Journal of Cancer Survivorship of initial treatment which may proactively legitimise concerns which had been absent in previous iterations of CCRs noted in this review [10]. Changes in consulting modalities since the start of the COVID-19 pandemic may mean that included studies may not be relevant to current practice [64]. Further studies should identify the role that primary care practitioners believe they have in CCRs, their perceived use- fulness for patients as well as the process for undertaking CCRs (see Table 2). The Care Act 2014 (UK) does high- light the need for primary care providers to support carers, and whilst this is not included formally in CCRs it could be considered for future iterations provided it was accompa- nied by adequate resourcing [65]. Other work could focus on improving care coordination between secondary care and primary care such as treatment summaries. The views of patients would be valuable to understand the role that CCRs do and should play in delivering long term cancer care. CCRs may very well be improved by telling patients about the role of CCRs and perhaps an electronic or paper printout at the end of the consultation could improve its impact [33]. In addition, further studies on how to support families, specifically caregivers, would be helpful. Author contribution DPG and SJCT contributed to the study con- ception and design. Systematic searching of the literature at title and abstract, as well as full text level, was performed by DPG and TA. Data analysis was performed by DPG, NE, PG and SJCT. The first draft of the manuscript was written by DPG which was edited by SJCT, NE, PG and TA. All authors read and approved the final manuscript. Funding Dipesh Gopal is an In-Practice Fellow supported by the Department of Health and Social Care and the National Institute for Health and Care Research (NIHR). TA and SJCT are supported by the NIHR ARC North Thames. Data availability The searches generated during the current study are available from the corresponding author on reasonable request. Declarations Ethics approval Not required. Competing interests The authors declare no competing interests. Disclaimer The views expressed are those of the authors and not nec- essarily those of the National Health Service (NHS), the NIHR or the Department of Health and Social Care. Open Access This article is licensed under a Creative Commons Attri- bution 4.0 International License, which permits use, sharing, adapta- tion, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in 1 3 Table 2 (continued) Pattern Advances Gaps Evidence for practice Research recommendations Validated outcomes to evaluate There are very few validated out- There is a need for research to evalu- Quality of care delivered in CCRs To carry out qualitative research with CCRs comes that can be used to evaluate ate the impact of CCRs before and is rarely measured and there is a patients about positive and negative CCRs. Holistic needs assessments after its implementation both in need for validated outcomes to experiences with CCR delivery prior to and after CCRs delivered a patient-practitioner and group evaluate care quality during CCR to inform a validated score which via 2 group consultations over a consultation setting. delivery. could be used in clinical practice. 6-month period showed decreased patients unmet needs. Journal of Cancer Survivorship the article's Creative Commons licence and your intended use is not 16. Munn Z, Peters MDJ, Stern C, Tufanaru C, McArthur A, Aro- permitted by statutory regulation or exceeds the permitted use, you will mataris E. Systematic review or scoping review? Guidance for need to obtain permission directly from the copyright holder. To view a authors when choosing between a systematic or scoping review copy of this licence, visit http://cr eativ ecommons. or g/licen ses/ b y/4.0/ . approach. BMC Med Res Methodol. 2018;18(1):143. 17. Arksey H, O’Malley L. Scoping studies: towards a methodologi- cal framework. Int J Soc Res Methodol. 2005;8(1):19–32. 18. Peters MDJ, Marnie C, Tricco AC, Pollock D, Munn Z, Alexan- References der L, et al. Updated methodological guidance for the conduct of scoping reviews. JBI Evid Synth. 2020;18(10):2119–26. 1. Cancer: World Health Organisation; 2022 [cited 2022 08 16]. 19. Tricco AC, Lillie E, Zarin W, O’Brien KK, Colquhoun H, Levac Available from: https:// www. who. int/ news- room/ fact- sheets/ D, et al. PRISMA extension for scoping reviews (PRISMA-ScR): detail/ cancer. checklist and explanation. Ann Intern Med. 2018;169(7):467–73. 2. Sung H, Ferlay J, Siegel RL, Laversanne M, Soerjomataram 20. PRISMA for Scoping Reviews: PRISMA: transparent reporting I, Jemal A, et al. Global cancer statistics 2020: GLOBOCAN of systematic reviews and meta-analysesd; 2018 [cited 2022 08 estimates of incidence and mortality worldwide for 36 cancers 16]. Available from: http://www .pr isma-s tatement. or g/Exten sions/ in 185 countries. CA Cancer J Clin. 2021;71(3):209–49.Scopi ngRev iews. 3. Collaboration GBoDC, Kocarnik JM, Compton K, Dean FE, 21. Berkowitz C, Allen DH, Tenhover J, Zullig LL, Ragsdale J 3rd, Fu W, Gaw BL, et al. Cancer incidence, mortality, years of life Fischer JE, et al. Knowledge and preferences of primary care pro- lost, years lived with disability, and disability-adjusted life years viders in delivering head and neck cancer survivorship care. J for 29 cancer groups from 2010 to 2019: a systematic analy- Cancer Educ. 2017;33:132–1327. sis for the global burden of disease study 2019. JAMA Oncol. 22. Peters MDJ, Godfrey CM, Khalil H, McInerney P, Parker D, 2022;8(3):420–44. Soares CB. Guidance for conducting systematic scoping reviews. 4. Ahmad AS, Ormiston-Smith N, Sasieni PD. Trends in the Int J Evid Based Healthc. 2015;13(3):141–6. lifetime risk of developing cancer in Great Britain: compari- 23. Survivorship: During and After Treatment: American Cancer son of risk for those born from 1930 to 1960. Br J Cancer. Society; 2022 [cited 2022 08 16]. Available from: https:// www. 2015;112(5):943–7. cancer . org/ tr eat ment/ sur vi vorsh ip- dur ing- and- af ter- tr eat ment. 5. Routes from diagnosis: Macmillan Cancer Support; 2020 [cited html. 2021 02 26]. Available from: https:// www. macmi llan. org. uk/ 24. Ouzzani M, Hammady H, Fedorowicz Z, Elmagarmid A. about-us/ what- w e-do/ e vidence/ using- cancer -dat a/r outes-fr om- Rayyan-a web and mobile app for systematic reviews. Syst Rev. diagn osis. html. 2016;5(1):210. 6. Cancer survival statistics for all cancers combined: Cancer 25. Bradbury-Jones C, Aveyard H, Herber OR, Isham L, Taylor Research UK; [cited 2022 08 16]. Available from: https://www . J, O’Malley L. Scoping reviews: the PAGER framework for cancer resear chuk.or g/healt h-pr ofession al/ cancer -s tatis tics/sur vi improving the quality of reporting. Int J Soc Res Methodol. val/ all- cance rs- combi ned. 2022;25(4):457–470 7. Statistics fact sheet: Macmillan Cancer Support; 2021 [cited 26. Watson EK, Sugden EM, Rose PW. Views of primary care physi- 2022 08 16]. Available from: https:// www. macmi llan. org. uk/_ cians and oncologists on cancer follow-up initiatives in primary images/ cancer- stati stics- facts heet_ tcm9- 260514. pdf. care: an online survey. J Cancer Surviv. 2010;4(2):159–66. 8. Personalised care and improving quality of life outcomes: NHS 27. Adams E, Boulton M, Rose PW, Lund S, Richardson A, Wilson S, 2022 [cited 2022 08 16]. Available from: https://www .eng land. et al. A qualitative study exploring the experience of the partners nhs. uk/ cancer/ living/. of cancer survivors and their views on the role of primary care. 9. Holistic Needs Assessments: Macmillan Cancer Support; 2022 Support Care Cancer. 2012;20(11):2785–94. [cited 2022 08 16]. Available from: https://w ww.m acmil lan.o rg. 28. Walter FM, Usher-Smith JA, Yadlapalli S, Watson E. Caring for uk/healt hcar e-pr ofession als/ inno vation- in- cancer -car e/holis tic- people living with, and beyond, cancer: an online survey of GPs needs- asses sment. in England. Br J Gen Pract. 2015;65(640):e761–8. 10. Cancer Care Review: Macmillan Cancer Support; 2022 [cited 29. Dilley SP. Can QOF cancer care reviews help with continuity of 2022 08 05]. Available from: https:// www. macmi llan. org. uk/ care? Br J Gen Pract. 2019;69(680):119. healthcar e-pr ofession als/ cancer -pat hwa ys/pr evention- and- diagn 30. Beaver K, Martin-Hirsch P, Williamson S, Kyrgiou M. Exploring osis/ cancer- care- review the acceptability and feasibility of patient-initiated follow-up for 11. Adams E, Boulton M, Rose P, Lund S, Richardson A, Wilson S, women treated for stage I endometrial cancer. Eur J Oncol Nurs. et al. Views of cancer care reviews in primary care: a qualitative 2020;44:101704. study. Br J Gen Pract. 2011;61(585):173–82. 31. Williamson S, Beaver K, Langton S. Exploring health care profes- 12. Quality and Outcomes Framework guidance for 2021/22: NHS sionals views on alternative approaches to cancer follow-up and England; 2021 [cited 2022 08 05]. Available from: https://www . barriers and facilitators to implementation of a recovery package. englan d.n hs.u k/w p-c onten t/u pload s/2 021/0 3/B 0456-u pdate-o n- Eur J Oncol Nurs. 2020;46:101759. quali ty- outco mes- frame work- chang es- for- 21- 22-. pdf. 32. Dyer S, Dewhurst S. Why general practice nurses need educa- 13. Johnston L, Young J, Campbell K. The implementation and tion about cancer as a long-term condition. Primary Health Care. impact of Holistic Needs Assessments for people affected by 2020;30(1):16–22. cancer: A systematic review and thematic synthesis of the lit- 33. Kendall M, Mason B, Momen N, Barclay S, Munday D, Lovick erature. Eur J Cancer Care (Engl). 2019;28(3):e13087. R, et al. Proactive cancer care in primary care: a mixed-methods 14. Corsini N, Neylon K, Tian EJ, Mahpirof E, McLaughlin A, study. Fam Pract. 2013;30(3):302–12. McLeod S, et al. Impact of treatment summaries for cancer sur- 34. Hodgson E. Group consultations for cancer care reviews in general vivors: a systematic review. J Cancer Surviv. 2020;14(4):405–16. practice. Pract Nurs. 2020;31(4):170–2. 15 Hill RE, Wakefield CE, Cohn RJ, Fardell JE, Brierley M-EE, 35. Lange M, Joly F, Vardy J, Ahles T, Dubois M, Tron L, et al. Can- Kothe E, et al. Survivorship care plans in cancer: a meta-anal- cer-related cognitive impairment: an update on state of the art, ysis and systematic review of care plan outcomes. Oncologist. detection, and management strategies in cancer survivors. Ann 2020;25(2):e351–72. Oncol. 2019;30(12):1925–40. 1 3 Journal of Cancer Survivorship 36. Wells M, Semple CJ, Lane C. A national survey of healthcare 52. Essue BM, Iragorri N, Fitzgerald N, de Oliveira C. The psycho- professionals’ views on models of follow-up, holistic needs assess- social cost burden of cancer: a systematic literature review. Psy- ment and survivorship care for patients with head and neck cancer. chooncology. 2020;29(11):1746–60. Eur J Cancer Care (Engl). 2015;24(6):873–83. 53. Ullgren H, Tsitsi T, Papastavrou E, Charalambous A. How fam- 37. Williamson S, Hack TF, Bangee M, Benedetto V, Beaver K. The ily caregivers of cancer patients manage symptoms at home: a patient needs assessment in cancer care: identifying barriers and systematic review. Int J Nurs Stud. 2018;85:68–79. facilitators to implementation in the UK and Canada. Support 54. Cai Y, Simons A, Toland S, Zhang J, Zheng K. Informal caregiv- Care Cancer. 2021;29(2):805–12. ers’ quality of life and management strategies following the trans- 38. Beesley VL, Staneva A, Nehill C, Milch V, Hughes F, Webb PM. formation of their cancer caregiving role: a qualitative systematic Patterns of, and barriers to supportive care needs assessment and review. Int J Nurs Sci. 2021;8(2):227–36. provision for Australian women with gynecological cancer and 55. Möllerberg MLSA, Lithman T, Noreen D, Olsson H, Sjövall K. their caregivers: a mixed-methods study of clinical practice. Pal- The effects of a cancer diagnosis on the health of a patient’s part- liat Support Care. 2020;18(2):170–7. ner: a population-based registry study of cancer in Sweden. Eur J 39. Hewitt ME, Bamundo A, Day R, Harvey C. Perspectives on post- Cancer Care (Engl). 2016;25(5):744–52. treatment cancer care: qualitative research with survivors, nurses, 56. Nakaya N, Sone T, Tomata Y, Nakaya K, Hoshi M, Shimizu K, and physicians. J Clin Oncol. 2007;25(16):2270–3. et al. All-cause mortality among Japanese whose cohabiting part- 40. Dulko D, Pace CM, Dittus KL, Sprague BL, Pollack LA, Hawkins ners are diagnosed with cancer: the Ohsaki Cohort 2006 study. NA, et al. Barriers and facilitators to implementing cancer survi- Acta Oncol. 2019;58(4):425–31. vorship care plans. Oncol Nurs Forum. 2013;40(6):575–80. 57. Samuelsson M, Wennick A, Jakobsson J, Bengtsson M. Models 41. LaGrandeur W, Armin J, Howe CL, Ali-Akbarian L. Survi- of support to family members during the trajectory of cancer: a vorship care plan outcomes for primary care physicians, can- scoping review. J Clin Nurs. 2021;30(21–22):3072–98. cer survivors, and systems: a scoping review. J Cancer Surviv. 58. Treanor CJ, Santin O, Prue G, Coleman H, Cardwell CR, 2018;12(3):334–47. O’Halloran P, et al. Psychosocial interventions for informal car- 42. Smith SL, Wai ES, Alexander C, Singh-Carlson S. Caring for egivers of people living with cancer. Cochrane Database Syst Rev. survivors of breast cancer: perspective of the primary care physi- 2019;6(6):CD009912. cian. Curr Oncol. 2011;18(5):e218–26. 59. Cheng Q, Xu B, Ng MSN, Duan Y, So WKW. Effectiveness of 43. Merport A, Lemon SC, Nyambose J, Prout MN. The use of cancer psychoeducational interventions among caregivers of patients treatment summaries and care plans among Massachusetts physi- with cancer: a systematic review and meta-analysis. Int J Nurs cians. Support Care Cancer. 2012;20(7):1579–83. Stud. 2021;127:104162. 44. Meiklejohn JA, Mimery A, Martin JH, Bailie R, Garvey G, Wal- 60. Ugalde A, Gaskin CJ, Rankin NM, Schofield P, Boltong A, pole ET, et al. The role of the GP in follow-up cancer care: a sys- Aranda S, et al. A systematic review of cancer caregiver inter- tematic literature review. J Cancer Surviv. 2016;10(6):990–1011. ventions: appraising the potential for implementation of evidence 45. Deckx L, Chow KH, Askew D, van Driel ML, Mitchell GK, van into practice. Psychooncology. 2019;28(4):687–701. den Akker M. Psychosocial care for cancer survivors: a systematic 61. Li Y, Li J, Zhang Y, Ding Y, Hu X. The effectiveness of e-Health literature review on the role of general practitioners. Psychooncol- interventions on caregiver burden, depression, and quality of life ogy. 2021;30(4):444–54. in informal caregivers of patients with cancer: a systematic review 46. Chan RJ, Agbejule OA, Yates PM, Emery J, Jefford M, Koczwara and meta-analysis of randomized controlled trials. Int J Nurs Stud. B, Hart NH, Crichton M, Nekhlyudov L. Outcomes of cancer 2022;127:104179. survivorship education and training for primary care providers: a 62. Resources for GPs: Macmillan Cancer Support; 2022 [cited 2022 systematic review. J Cancer Surviv. 2022;16(2):279–302. 08 05]. Available from: https://www .macmi llan. or g.uk/ healt hcar e- 47. Taylor S, Johnson H, Peat S, Booker J, Yorke J. Exploring the profe ssion als/ for- your- role/ doctor/ gp. experiences of patients, general practitioners and oncologists of 63. Resources for practice nurses: Macmillan Cancer Support; 2022 prostate cancer follow-up: a qualitative interview study. Eur J [cited 2022 08 05]. Available from: https:// www. macmi llan. org. Oncol Nurs. 2020;48:101820.uk/ healt hcare- profe ssion als/ for- your- role/ nurse/ pract ice- nurse. 48. Cromme SK, Whitaker KL, Winstanley K, Renzi C, Smith CF, 64. Murphy M, Scott LJ, Salisbury C, Turner A, Scott A, Denholm Wardle J. Worrying about wasting GP time as a barrier to help- R, et al. Implementation of remote consulting in UK primary care seeking: a community-based, qualitative study. Br J Gen Pract. following the COVID-19 pandemic: a mixed-methods longitudi- 2016;66(648):e474–82. nal study. Br J Gen Pract. 2021;71(704):e166–77. 49. Vos JAM, Wieldraaijer T, van Weert HCPM, van Asselt KM. Sur- 65. Marczak J, Fernandez JL, Manthorpe J, Brimblecombe N, Mori- vivorship care for cancer patients in primary versus secondary arty J, Knapp M, et al. How have the Care Act 2014 ambitions care: a systematic review. J Cancer Surviv. 2021;15(1):66–76. to support carers translated into local practice? Findings from a 50. Zafar SY, Peppercorn JM, Schrag D, Taylor DH, Goetzinger AM, process evaluation study of local stakeholders’ perceptions of Care Zhong X, et al. The financial toxicity of cancer treatment: a pilot Act implementation. Health Soc Care Community. 2011. https:// study assessing out-of-pocket expenses and the insured cancer doi. org/ 10. 1111/ hsc. 13599. patient’s experience. Oncologist. 2013;18(4):381–90. 51. Webb ME, Murray E, Younger ZW, Goodfellow H, Ross J. The Publisher's note Springer Nature remains neutral with regard to supportive care needs of cancer patients: a systematic review. J jurisdictional claims in published maps and institutional affiliations. Cancer Educ. 2021;36(5):899–908. 1 3
Journal
Journal of Cancer Survivorship: Research and Practice – Springer Journals
Published: Dec 1, 2023
Keywords: Living with and beyond cancer; Cancer survivorship; Cancer care reviews; Cancer; Primary care; Scoping review