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Research Commodity

The role of health literacy in cancer intendance: A mixed studies systematic review

• Chloe E. Holden,
• Sally Wheelwright,
• Amélie Harle,
• Richard Wagland

ten

• Published: November 12, 2021
• https://doi.org/10.1371/journal.pone.0259815

Figures

Abstract

Background

Patients diagnosed with cancer face up many challenges and need a good understanding of their diagnosis and proposed treatments to make informed decisions about their care. Wellness literacy plays an important office in this and low wellness literacy has been associated with poorer outcomes. The aims of this review are to identify which outcomes relate to health literacy in patients with cancer, and to combine this through a mixed studies approach with the patient experience as described through qualitative studies.

Methods

Four electronic databases were searched in January 2021 to identify records relating to wellness literacy and patients with cancer. Records were independently screened and so assessed for inclusion by two reviewers co-ordinate to the following criteria: patients aged ≥eighteen years with cancer, English language publication AND health literacy measured with validated tool and measured result associated with health literacy OR qualitative study exploring the role of wellness literacy as patients brand decisions virtually health. Quality was independently assessed by two reviewers. A narrative synthesis was performed, and findings integrated through concept mapping. This systematic review was registered with PROSPERO, entry CRD42020166454.

Results

4441 records were retrieved. Following de-duplication, 2496 titles and abstracts were screened and full texts of 405 papers were reviewed for eligibility. 66 papers relating to sixty studies met the eligibility criteria. Lower wellness literacy was associated with greater difficulties understanding and processing cancer related data, poorer quality of life and poorer experience of care. Personal and situational influences contributed to how participants processed information and reached decisions about their intendance.

Conclusion

This review highlights the of import part of wellness literacy for patients with cancer. Outcomes are poorer for those who feel difficulties with health literacy. Further efforts should exist fabricated to facilitate understanding, develop wellness literacy and support patients to go more involved in their intendance.

Citation: Holden CE, Wheelwright S, Harle A, Wagland R (2021) The office of health literacy in cancer care: A mixed studies systematic review. PLoS 1 16(11): e0259815. https://doi.org/x.1371/journal.pone.0259815

Editor: Christian von Wagner, University Higher London, United kingdom of great britain and northern ireland

Received: May 11, 2021; Accustomed: Oct 26, 2021; Published: November 12, 2021

Copyright: © 2021 Holden et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Data Availability: All relevant information are within the paper and its Supporting information files.

Funding: This work was supported by the Robert White Legacy Fund through a Clinical Research Fellowship (CH, no grant number). The funders had no office in study blueprint, data collection and analysis, determination to publish, or preparation of the manuscript.

Competing interests: The authors accept alleged that no competing interests be.

Introduction

Patients with cancer are expected to empathize complicated data virtually their diagnosis and direction. They must learn a new linguistic communication of wellness terminology, provide consent for treatments and procedures, turn up at the correct time and identify for their appointments and seek aid in an appropriate style and in a timely way. Health literacy is integral to this.

Health literacy has been defined as "the combination of personal competencies and situational resource needed for people to admission, understand, assess and apply information and services to make decisions about wellness. It includes the capacity to communicate, assert and deed upon these decisions" [1]. Two distinct views of health literacy, as either a 'risk' or an 'asset', take been proposed [2]. The 'chance' approach is largely associated with work in the clinical domain, exploring the impact of health literacy on private and health system outcomes. Health literacy in this context is used to draw an individual's literacy skills, and low health literacy is seen equally a gamble factor that must be compensated for. In the 'asset' approach nonetheless, which has developed from work in public wellness, health literacy is seen as an asset to be congenital, comprising more than only functional skills and including the evolution of more advanced social and communication skills as a means of increasing patient empowerment [2].

Every bit a 'adventure', health literacy is associated with hospitalisation, use of emergency care, uptake of preventative services, power to understand wellness data and accept medications appropriately, and, in older people, with wellness status and mortality [iii]. Crucially, it is modifiable [4, v] and improving wellness literacy is increasingly recognised every bit a way of improving outcomes, including in Europe's Chirapsia Cancer Plan [6].

In addition to relationships with health outcomes, health literacy is a prerequisite for shared and informed decision making [seven, viii] and has close ties with person-centred care, which aims to support patients to develop their knowledge, skills and confidence to participate in a partnership with their healthcare provider [ix]. Edwards et al.'s Health Literacy Pathway Model considers health literacy from the 'asset' perspective, and portrays the development of health literacy every bit a process over fourth dimension, influenced by personal, emotional and facilitating factors, leading towards active involvement in consultations and shared conclusion making [8]. Such involvement is peculiarly important in cancer care, where patients are often faced with preference-sensitive decisions, and these closely related concepts are therefore very relevant to this setting.

This newspaper aims to provide an upwards to date overview of the literature, enabling us to sympathize the clinical relevance of health literacy in cancer care more than broadly than existing reviews focussing on self-management behaviours [10], limited to studies from the USA [11] and exploring interventions to amend wellness literacy [12] have immune. Given the complication of the concept and the personal preference-specific nature of decisions made in the oncology setting, a mixed studies approach was chosen. This was to ensure that the patient vocalisation was heard alongside the quantitative findings and to provide further insight into the patient experience than might have been possible through analysis of measured patient reported outcomes. To our knowledge, no prior systematic reviews have sought to join such a comprehensive outline of the field in this style. The objectives were: ane) to identify which outcomes relate to health literacy in patients with cancer and 2) to explore the role and consequences of health literacy, reported by qualitative studies, as patients with cancer access, understand, appraise and use data and services to make decisions about health.

Methods

The review protocol was prospectively registered with the International Prospective Annals for Systematic Reviews (PROSPERO), entry number CRD42020166454. Diction of the qualitative objective has been refined since registration.

Search strategy

Searches were carried out on four electronic databases (MEDLINE, EMBASE, PsycINFO and CINAHL) in January 2021. Publications addressing cancer and health literacy were sought using search terms identified through review of the existing literature, including MeSH terms (neoplasms, health literacy) and keywords (cancer, malignancy, tumour, tumour, carcinoma, health literacy and health competence). Specific outcomes were non stipulated due to the predictable varied nature of the studies. The search strategy was reviewed by an experienced librarian and is shown in S1 File. Visual scanning of reference lists from included studies was undertaken. Citations were managed through Endnote X9 and Microsoft Excel.

Screening of titles and abstracts was undertaken by two independent reviewers, with 1 screening all papers (CH) and iii reviewers screening a 3rd of papers each (AH, RW, SW), with a preference for inclusion if at that place were disagreements. Post-obit the initial screening process, total texts of the remaining studies were obtained and independently reviewed for eligibility by two authors (CH and AH, RW or SW) according to the following criteria:

Inclusion

• Patients anile ≥18 years with malignancy of any site (if mixed grouping, data able to be separated)
• English language language

AND

• Quantitative papers:
  • Health literacy assessed with validated tool (concerning general or cancer health literacy, used in its validated form in its entirety)
  • Measured outcomes associated with health literacy

OR

• Qualitative papers:
  • Studies exploring the part of health literacy as patients access, empathize, assess and use information and services to make decisions about health

Exclusion

• Utilize of the term 'health literacy' but referring to illness specific noesis merely
• Example reports, review papers, conference proceedings, stance pieces, editorials, letters to the editor, dissertations/theses, book capacity, protocols

At all stages, disagreements were resolved through discussion.

Information extraction

One reviewer (CH) extracted data from all papers, with independent extraction from viii papers by a second reviewer (RW, SW) to bank check for accuracy. Data on report characteristics (writer, year, country report undertaken, setting, design, aims/objectives, inclusion/exclusion, recruitment procedure, health literacy mensurate used and how limited wellness literacy defined), sample (age range, sex ratio, cancer site, stage, number of participants and number of eligible participants if mixed group, proportion limited health literacy according to measure used and by neoplasm site), outcomes (as reported in individual studies, measures used and issue of health literacy on these) and qualitative methods used, data assay procedure, cardinal themes and findings and participant quotes were collected.

Quality appraisal

Quality was assessed using the Mixed Methods Appraisement Tool (MMAT) [13], assuasive all study types to be appraised using a single tool for consistency. MMAT scores are given out of a total of five, with a point scored for each 'Yes' reply, and no points awarded for 'No' or 'Can't tell' responses. Studies were considered college quality if they scored 4/five or v/5. Quality assessment was carried out by ii independent reviewers, with one assessing all papers (CH), and three assessing a third of the papers each (AH, RW, SW). Disagreements were resolved through discussion.

Data synthesis

Statistical pooling of data was not performed due to the varied report designs, outcomes, health literacy assessment tools and thresholds used to identify participants with lower health literacy. Drawing on guidance developed past Popay et al. [14], a narrative synthesis was undertaken.

After extraction of the information, studies were grouped and tabulated based on the two review objectives. To address the second, qualitative objective, a thematic analysis was performed [14]. The cardinal themes, authors' descriptions and interpretations, and supporting quotations were extracted from the results sections of the original qualitative papers, alongside relevant contextual data. Using an iterative process, similar themes were and then grouped and used to develop meta-themes, drawing on existing definitions and theoretical frameworks [1, 8, 15]. An initial grouping and development of meta-themes was made by CH before being farther refined by RW, after which all authors reviewed the chief texts and met to talk over each meta-theme and contributory theme. Any disagreements were resolved through word until consensus on the final grouping was reached.

Finally, relationships betwixt studies beyond both objectives were explored through concept mapping, again drawing on existing models every bit appropriate [one, 8], and findings integrated.

Results

4440 records were retrieved from the searches (Fig 1). After removal of duplicates, 2496 titles and abstracts were screened. Total texts of 405 papers were reviewed for eligibility, and 66 papers relating to 60 studies were ultimately selected for inclusion. One boosted eligible study was identified through reference list scanning.

Objective 1: Outcomes relating to health literacy in patients with cancer

L-eight papers relating to 52 studies addressed this objective, of which 49 studies were of quantitative non-randomised design. The majority were conducted in the The states (31/52), and the most common health literacy assessment tools were variations on the Chew screening questions (16/52) and Rapid Estimate of Adult Literacy in Medicine (REALM) (12/52). Breast (N = 12) and prostate cancer (N = viii) were the most studied individual neoplasm sites, and a further 21 studies included participants with a variety of cancer diagnoses. Thirty-2 papers were considered higher quality (MMAT score 4/v or five/v). See Table i for details of included studies and Table 2 for a summary of the reported associations between health literacy and outcomes. Additional study details can exist found in S1 Tabular array. When referring to the significance of associations, the threshold for statistical significance is taken to exist p<0.05.

Information processing.

Five higher and seven lower quality studies considered outcomes relating to data processing. Lower health literacy was associated with lower ease of agreement, as well as college and more variable estimates of risk relating to breast cancer recurrence in women with early on stage disease [16, 25]. Participants with lower health literacy had significantly college unmet information needs in another big (Due north = 1060) study of patients with newly diagnosed breast cancer, although confounding variables were non controlled for [69]. A smaller but higher quality study of patients with mixed tumour sites, which did consider confounders, reported a significant clan between health literacy and information needs in bivariate assay only [37]. For radiotherapy outpatients with lower health literacy, the need for data about treatment at a single middle decreased significantly from pre-initial consultation to 3–five weeks afterward the initial visit [50], though again, confounders, including time between consultations and treatment grade length, were not accounted for.

Higher wellness literacy was associated with college information recall in patients with chest cancer and in older patients with mixed tumour sites [34, 49]. It was also associated with greater affliction specific knowledge about human papilloma virus (HPV) among patients with caput and neck cancer [20], greater prostate cancer knowledge in patients with the disease [60], trials noesis [64] and, in a small single centre study, with chemotherapy knowledge [62]. A small study of patterns of eye tracking reported a difference between time spent on aspects of a spider web based prostate cancer decision aid by those with higher and lower wellness literacy [73]. Those with lower health literacy appeared to spend longer on the prognostic text and infographic, simply this was based on very express information from 12 participants.

Decision making.

Four studies exploring health literacy and decision making (three of higher quality) found mixed results. Using cocky-report measures, an association between higher health literacy and preference for more than active participation in decision making was reported in 1 study of women making decisions about breast cancer recurrence run a risk testing [34], and with college perceived involvement in shared decision making in another cross-sectional study of cancer patients at a single eye [28]. Yet no association was found when assessing preference for involvement in decision making regarding participation in clinical trials [44]. A secondary analysis of data from a randomised controlled trial evaluating decision aids for breast cancer, the only report to measure observed shared decision making, did not find a deviation according to health literacy [67]. The called cut point for the health literacy screening question was college than is recommended [74, 75], with a higher sensitivity but lower specificity for detecting lower health literacy, which may account for the lack of difference seen.

Quality of life.

Twelve studies, of which eight were higher quality and five had over 500 participants, reported an clan between lower health literacy and poorer quality of life. Studies included patients with colorectal [19, 39], breast [29], prostate [52, 65], lung [33], caput and neck [23, 30] and mixed neoplasm sites [42, 47, 48, 68], and used a diversity of health literacy and quality of life assessment tools. Only a unmarried survey did not find a significant difference in quality of life between patients with low and higher health literacy [eighteen], which may be due to its relatively pocket-sized sample size compared with other large college quality studies [xix, 29, 47]. The study included a convenience sample of 97 patients with mixed neoplasm sites recruited from the waiting rooms of two clinics, and assessed health literacy using three different tools. Lower health literacy ranged from 5%-46% using the different measures, though the authors annotation at that place was no association between whatsoever mensurate and quality of life.

Treatment and health service apply.

Eleven studies considered treatment and health service use, half dozen of which were college quality. Higher wellness literacy was significantly associated with increased odds of receiving adjuvant chemotherapy for stage Iii/IV colorectal cancer [26]. It was as well associated with an increased likelihood of reconstruction after mastectomy in a cantankerous exclusive study of 336 women with breast cancer attending a single centre [24], though this was significant in univariate assay just. A further study of men with prostate cancer identified a trend for those with college health literacy having a lower likelihood of undergoing unproven salvage androgen deprivation therapy for prostate specific antigen (PSA) recurrence [36], but this was over again significant in univariable analysis only. In a unmarried middle study of patients receiving chemotherapy, those with lower health literacy experienced more than form 3 and above agin drug reactions [54].

Although no clan was found in ane retrospective written report [63], lower health literacy was significantly associated with increased number and length of hospital admissions in a cohort study of patients with mixed tumour sites (Northward = 752) [17] after controlling for diagnosis, receipt of chemotherapy, comorbidities and other variables. In a national survey of 4045 French cancer survivors five years post diagnosis, those with lower wellness literacy were more than likely to see their general practitioner for follow up of their cancer, which may suggest increased health service apply, though data on frequency, reasons for visits, and contact with a specialist was non collected [41].

Patients requiring post-cystectomy belch services in one eye had lower wellness literacy scores; pregnant on bivariate analysis [59], however, a alter in practice during the written report period led to an increase in the number of patients receiving belch services regardless of risk factors is likely to take afflicted outcomes. In the same eye, those with lower health literacy were significantly more likely to feel a small post-operative complexity [63]. Treatment continuity for patients with non-muscle invasive float cancer was significantly higher in those with adequate health literacy in another study [72], but it is not clear how this was assessed, and confounders were non controlled for in the analysis. In another report, self-reported adherence to follow up after bowel cancer was non associated with wellness literacy [38].

Medication adherence.

4 studies, of which one was college quality [21], explored the association between health literacy and oral medication adherence. Adherence to general medications [71], specific oral chemotherapy (capecitabine) [21], and to diverse anti-cancer medications, including hormonal and targeted treatments [51, 66] was assessed. College health literacy was associated with higher levels of adherence in three studies of up to 100 participants [21, 51, 71]. One study of patients with gynaecological cancers (N = 100) did non report a significant clan, though it was non powered to detect predictors of non-adherence [66]. All just i study [21] relied on self-report.

Care coordination.

Three studies considered aspects of care coordination, of which two were small but considered higher quality [31, 35]. One survey of Chinese migrants with cancer in Australia found a positive correlation between higher health literacy and ameliorate experience of care coordination [35]. Another, of patients with mixed tumour sites [31], constitute an clan between lower health literacy and higher input required from a patient navigator, although this did non remain significant in multivariate assay. The third study involving 863 women with chest cancer found that those with 'inadequate' health literacy, equally determined past the HLS-EU-Q16, were significantly less likely to participate in multidisciplinary tumour conferences than those with 'sufficient' health literacy [57].

Other outcomes.

A range of other outcomes were also explored. Lower health literacy was associated with lower levels of physical action, significant on bivariate assay in a large report of patients with colorectal cancer [19], and in stepwise regression analysis of patients with breast cancer [43], and with significantly increased upper extremity disability after breast cancer in bivariable analysis [29]. It was besides associated with higher cancer-related [53] and unexpressed needs [56], increased likelihood of need for psychological back up [61], increased fear of progression in a study of older patients with chest cancer [55], college fear of recurrence in patients with caput and neck cancers [thirty], and greater treatment regret in a pocket-sized study of men with prostate cancer [58]. Lower health literacy was associated with greater distress in three studies [19, 22, 41], though the same clan was non found when 1 of the studies used a different measure of wellness literacy [22]. Lower health literacy was significantly and independently associated with increased cancer treatment related financial hardship [38], and self-care direction scores were lower for patients with lower health literacy in another unmarried centre report [32]. Higher wellness literacy was associated with greater preference for patient centred intendance [27], patient appointment [45], and cocky-efficacy in two studies [46, 53], though no association was found in a tertiary single-middle study [42]. Those with college wellness literacy were significantly more than likely to report willingness to participate in a clinical trial if one was offered [44], and men with early prostate cancer and higher health literacy reported significantly fewer practical concerns [46].

Mortality [26], presentation with early stage affliction [26], self-care behaviours [33], perception of doctors' communication of recurrence risk [70] and perceived changes to longevity with handling or ascertainment [xl] were not associated with wellness literacy.

Objective ii: Qualitative studies exploring the role and consequences of health literacy every bit patients with cancer access, empathize, assess and utilise information and services to brand decisions about wellness

Viii qualitative studies were identified and add the patient voice to the findings of this review (Tabular array 3). Studies included patients with prostate cancer [76–78], chest cancer [79, lxxx] and haematological malignancies [81]. One included patients with unlike chief tumours [82] and one report did not report on tumour site [83]. 6 studies were of higher quality co-ordinate to the MMAT, and one mixed methods study scored highly for the qualitative component but achieved a lower score overall.

Table iv demonstrates how the original themes reported past the individual studies were grouped to course meta-themes. The meta-themes identified included situational influences (networks and system), personal influences, information processing, and consequences of health literacy. Situational influences refer to the factors external to the person which influence their ability to procedure information. They include network influences, incorporating sources of information and back up exterior of the healthcare environment, as well equally system influences, relating to professionals within the healthcare organization and structural factors involved in care delivery. Personal influences refer to more internal factors that might contribute to health literacy, such as prior experience, cultural values and emotions. Information processing encompasses the strategies described by patients to help them deal with and procedure the data they face. Consequences refer to the outcomes of these influences and processing, and include negative aspects, such as fear or uncertainty, as well as more positive outcomes, such as empowerment and amend understanding.

Situational influences.

All viii papers described themes relevant to the office of external or situational influences on health literacy. Two primal areas were identified: the importance of networks, which were largely supportive and facilitated agreement; and the organization, which ofttimes acted as a bulwark and inhibitor to the development of health literacy.

Situational influences—Networks.

Social and informational networks played important roles as facilitators of health literacy and were amongst the situational resources bachelor to patients enabling them to access, understand, appraise and use data and services. Although some participants expressed a preference to deal with their diagnosis past themselves [76], many relied on friends and family as sources of information and back up [76–78, eighty, 81]: "I was a little reluctant because I really didn't know that much nearly the IORT at starting time. But then I talked, actually afterwards talking to a friend of mine who had, you lot know, the traditional radiation, she said, "Man, I can't imagine how much meliorate it would exist just to do information technology once, just to have ane dose of radiation."… Then later on talking to my friend who had a very bad feel, she got burned… I merely decided I didn't want to do the traditional" (female stage 2 clinical trial participant, adequate wellness literacy) [80]. Learning from other patients nearly their experiences, oft through support groups or organisations, immune participants to develop a greater understanding of their diagnosis and handling [77, 78, 81]. Support groups also offered participants the opportunity to hear from and talk to 'experts' outside the consultation setting, helping to build confidence to ask questions: "You find conviction and get encouraged to talk to health professionals, ask questions, and that will simply come through building confidence. If you have any trouble, try to seek the reply for it" (73 twelvemonth quondam attendee at prostate cancer support group for 14 years) [77]. Only occasionally, these social connections acted as barriers, such every bit when the noesis imparted was inaccurate or led to increased fear [83]. The internet was a valuable resources for many participants, who were able to use it to find further information and additional support [76, 77, eighty, 81]: "I take done inquiry through the Internet. The Leukemia Society, I called them, and they got me, they hooked me upwardly with another patient that had gone through all of this, and she and I talked back and along on the telephone. She told me nearly talking to other patients at the hospital. I am a member of a support group on the Net that we counsel leukemia and everything, and every kind of inquiry that you can think of, I have read well-nigh it. And so, when the doctors come in and talk to me, it is null unknown or shocking to me because I take read nearly it" (41-twelvemonth-onetime African American woman prior to access for stem cell transplant) [81].

Situational influences—System.

Health literacy was too influenced by 'system' factors that are exterior participants' control. Professionals inside the healthcare organization played a vital role in imparting information, and, when done well, participants' confidence in their clinicians fabricated them experience more comfortable in their decision making [fourscore]: "I was concerned and I was very open, and they were open with me in explaining what the procedure would be… I almost fabricated information technology right there on the spot because I but felt and so secure that my problem would be taken care of" (female phase ii clinical trial participant, marginal wellness literacy) [80]. Yet this information giving was not e'er done in a style that participants could understand [78, 82]: "They used also many big words… Information technology is a complicated procedure. They explained everything, only you nevertheless don't become it." (35 year old postal carrier undergoing stalk cell transplant) [81]. The healthcare system itself placed high demands on participants' wellness literacy, with over-complicated forms which some participants signed without fully agreement: "I have signed a lot of papers without reading. I effigy they ain't gonna give me goose egg to sign if information technology's bad" (rural cancer patient) [82], and through inconsistent access to resources and opportunities to further agreement [79]. Participants in one study described cancer care as a "strange" feel and didn't know what to inquire nearly their treatment options [82], providing support more generally for the recommendations past Treloar et al. [83] for improved customs education to heighten awareness and help set people for such a diagnosis.

Personal influences.

Participants' health literacy was as well afflicted by personal influences. These included cultural and community values such every bit stoicism, which led to patients 'suffering in silence' rather than 'bothering' healthcare professionals [82] and a "silence among men" impeding open discussion and thus understanding [78]. Silence was exacerbated past limited experience of cancer prior to diagnosis: "Cancer has never sort of crossed my life till at present… I used to be a health worker, an educator, but cancer was never part of my life, I never knew anyone with cancer, I never seen anyone with cancer, maybe on TV but not in the here and now, cos I was e'er busy with Aboriginal health and pedagogy Ancient wellness, just cancer was never function of our plan, which was a shame" (Aboriginal patient who had previously worked in health sector) [83]. Participants' general literacy was influenced by social and cultural exposures over time, typically encouragement at school or at home, and fed into their arroyo to learning about their condition [78].

Information processing.

Some participants used strategies to help them procedure information, highlighted past ii studies of male person attendees at prostate cancer support groups. Focussing on numbers relating to pathological grading or biomarkers and the relationship of these to treatment options facilitated understanding of prostate cancer and allowed men to appraise their options: "Researcher: In what means did it [the prostate cancer back up grouping] help yous steer your treatment? Participant: By giving me data about how each of the approaches is and how it works, the long-term and short-term furnishings of each, the certainties and uncertainties around each one, and certainly the cure rate" (59 year old attendee at prostate cancer support group for three years) [77]. In another study, patients used a process of deductive and hypothetical reasoning, comparing data from different sources, or comparing themselves with others, to further their understanding, monitor their response to treatment, and verify information given to them past healthcare professionals [78]. A unlike study, assessing perceptions of the risks and benefits of participation in a trial of a novel radiotherapy technique for chest cancer, institute that many participants did not believe in that location were any risks, and most focussed instead on the positives, such as convenience of the treatment, which were influential in their determination to take part [eighty].

Consequences.

The effect of some of these influences and processes tin can be seen in the wider consequences of health literacy. Where in that location was alien advice or poor agreement, this led to conclusion dilemmas, and participants were prepared to accept a treatment without total comprehension as a fashion of moving on and progressing their care [81]. When the information patients needed was not given, or not in a way they could understand, they experienced greater fear: "Many of the things yous fear are those yous don't understand" (42 twelvemonth sometime industrial worker undergoing haematopoietic stem cell transplant) [81]. Poorer prior agreement also led to more unanticipated side effects [81], which in turn influenced decisions nearly medication adherence: FGA: "I don't have everything they requite me." "If it has too many side effects, I don't take it." FGB: "I didn't have annihilation because I was agape of the side effects". FGB: "They tell you some of the side effects but they don't tell you all the side effects" (quotes from female African American participants with breast cancer from ii focus groups (FGA and FGB)) [79].

Conversely, those who had developed a good agreement and the confidence to do so were able to effectively navigate the healthcare organization and exercise their rights to ensure that they received 'adept care': "I felt this urologist was pushing me for surgery and I thought geez, I don't have enough knowledge, I want data. Then, I kept pushing him, to tell me where the groups [PCSGs] were and he was reluctant to tell me, merely finally he agreed, and I went, and I never went back to this guy and I started my search and the prostate cancer groups were very instrumental in helping me to make my decision. They gave me cognition." (63 year erstwhile attendee at prostate cancer back up groups for x years) [77]. Patients accessed information in different ways, influenced by personal factors including the desire not to be a bother, and situational influences, such every bit time pressures on healthcare staff. When these influences were removed, if patients knew their pharmacists well or they appeared to have time to talk, for case, or if patients had the confidence to overcome these influences, it was possible for them to seek and obtain the information they needed [79].

Combined synthesis and conceptual map

The concept map below (Fig 2), shows the relationships between the outcomes associated with health literacy as identified by the quantitative studies (Objective i) and the meta-themes identified from the qualitative synthesis (Objective two). It draws on the existing framework adult by Edwards et al. [viii] and the definition of health literacy proposed by the International Union for Health Promotion and Educational activity [1].

Patients with lower health literacy may have more difficulty understanding and recalling the information they have been given, demonstrate lower noesis and take higher unmet information needs ('Processes', Fig 2). The qualitative information suggest that situational influences, including the manner that data is delivered, the complexity of the arrangement, and the lack of resources available to patients brand these tasks more challenging ('Influences'). As such, patients are prepared to consent to treatments without fully understanding what they may entail, or what the potential risks and benefits are ('Outcomes'). Fright and unanticipated side effects may arise as a consequence of lower health literacy through lack of understanding ('Outcomes') yet fright itself may influence and hinder comprehension ('Influences').

Those with higher health literacy are ameliorate able to process information ('Processes'), engage more with health promoting activities such as practise, and experience a better quality of life ('Outcomes'). They may exist more probable to seek out the additional information they need, perhaps learning to translate numbers relating to their condition or finding opportunities to learn from others ('Processes'). With greater understanding and knowledge of their disease and their rights, they may take a more than active role in making decisions about their intendance and have greater conviction in navigating the arrangement ('Outcomes').

Word

The findings from this mixed studies systematic review demonstrate the office and consequences of health literacy in the oncology setting. The outcomes associated with health literacy are varied, with some having clear implications for care delivery, and others demonstrating the negative touch of health literacy difficulties on the experience of care every bit reported by patients themselves. While the quantitative data gives prove for the measurable outcomes associated with health literacy, the qualitative findings complement this by adding the patient voice, identifying some of the influences of health literacy, and offering an insight into some of the associations seen. Findings relating to information processing and decision-making highlight some of the 'Processes' affected by these 'Influences' and demonstrate how health literacy may link to the described 'Outcomes'. Ensuring that the arrangement is considerate of the brunt it places on patients, taking steps to simplify information and processes, providing patients with the confidence and opportunities to speak up, and making support available is therefore essential.

Although farther empirical piece of work is needed to determine the nature of these associations, the causal links between health literacy and health outcomes accept been hypothesised [84, 85]. These models consider the range of mediating factors that may influence the pathway, including patient and system factors affecting access and utilisation of health care, provider-patient interaction and self-intendance [84], likewise as health condition, attitudes, emotions, motivation, self-efficacy and ecological resource [85], some of which are included as associated outcomes in this review. In addition, wellness behaviours and outcomes may in plow influence these mediators and health literacy skills [85]. Poorer quality of life, for case, which was consistently associated with lower wellness literacy, may be linked with other outcomes identified in this review, such as increased fearfulness, greater financial hardship or a worse experience of handling, as such outcomes may influence or indeed human activity as mediators in the pathway. Whether improving health literacy itself leads to meliorate quality of life is as yet unknown [86], and this is an important outcome for further study.

Our review supports the Health Literacy Pathway Model presented by Edwards et al. [8], which draws on Nutbeam's conceptualisation of health literacy equally an asset that tin be developed over time [2]. The model incorporates internal and external influences that may positively or negatively touch a person's health literacy [8], factors we take also plant to be important in patients with a cancer diagnosis. Such patients face many new challenges at a highly emotional fourth dimension. It is therefore crucial that the systems and networks are in place to support patients, making information technology easier for them to admission, empathise, appraise and utilize the data they want and need past removing as many additional barriers as possible. In doing this, patients are afforded the all-time chance of being able to develop and use their wellness literacy to take an active role in their wellness and make informed decisions based on what is of import to them.

The controlling preferences and degree to which patients with lower health literacy feel able to take on a more than active function in the oncology setting require farther written report. But whether a patient wishes to be actively involved in decision making or prefers to exist guided by their clinician, an understanding of the aims and potential risks of handling are key to informed consent [87]. The General Medical Council (GMC) guidance for doctors in the United Kingdom highlights the importance of taking steps to facilitate agreement, acknowledging that patients have unlike information needs and may prefer to receive information in different formats [87]. Our findings suggest that this is not e'er achieved.

Ane limitation of this review is the exclusion of studies using measures relating to health literacy but referring merely to literacy. This was to ensure that wellness literacy remained the field of study of interest, simply other studies may accept been missed. Secondly, to reach consistency in a field with a range of measures, it was agreed that only those health literacy assessment tools used in their validated form would be included. Although this excluded some studies using not-validated adaptations, it was deemed important in gild to exist able to draw whatsoever comparisons betwixt studies. As establish elsewhere, the range of health literacy measures and identification of participants with lower wellness literacy makes such comparisons hard. Over half of the included studies were conducted in the U.s.a., with none carried out in the United kingdom of great britain and northern ireland, which may limit the relevance of some results to other healthcare settings.

A major strength of the review is the use of the mixed methods approach, bringing together a more comprehensive motion picture of health literacy in the oncology setting, incorporating the patient vocalization and assuasive u.s.a. to better understand the experience from the patients' perspective. The broad inclusion criteria allowed us to place the association betwixt health literacy and a wider range of outcomes than has previously been addressed [10, 11]. Additionally, involvement of a multidisciplinary team of experienced researchers and clinicians at all stages of the review ensured consistency and rigour throughout the process.

Conclusion

Health literacy plays a key role in cancer care, with important implications for patient experience and outcomes. Those with lower wellness literacy face greater difficulties processing information, report poorer psychological outcomes and experience a poorer quality of life, whilst those with college health literacy announced improve informed and able to take on a more active office in managing their wellness. Hereafter interventions aimed at supporting person centred care in this setting should therefore take business relationship of health literacy and consider the factors influencing its evolution. Further research is required to better understand the determination making processes and preferences of those with lower health literacy receiving care for cancer.

Supporting information

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