Effect of healthcare professional-delivered health literacy interventions on patient reported outcomes in cancer patients - a systematic review.

Background

Cancer, a complex and challenging disease affects over a quarter of people before age 75 worldwide [ 1 ]. In the beginning of the disease trajectory patients are confronted with complex information about treatment decisions [ 2 ]. Due to the complexity of this disease, patients face barriers in understanding medical information from healthcare professionals (HCPs), hindering involvement in their own cancer care [ 3 ]. This is particularly evident in patients, who described the diagnosis as a time of emotional distress. This emotional state makes it difficult for them to understand and absorb new information regarding their diagnosis or treatment or to ask follow-up questions. In addition to emotional distress other barriers further complicate the engagement of patients in their cancer care. The most commonly barrier for patients is receiving adequate social support, financial concerns, and problems communicating with their healthcare provider [ 4 – 6 ]. To be actively involved in their treatment, patients are expected to understand complicated medical information, participate in fundamental treatment decisions and seek help [ 7 , 8 ]. This is why health literacy (HL) could be the most important factor in managing complexities and emotional challenges of cancer, and helping patients to cope better with their illness [ 9 ].

Based on the model by Sørensen et al. [ 10 ], HL is defined as knowledge, motivation, and abilities to find, understand, assess, and apply relevant health information in various forms. In the context of cancer care, this includes making judgments and decisions in the areas of disease management and disease prevention and maintaining or improving Quality of Life (QoL). HL can be supported through a variety of interventions led by HCPs. Examples include education programs explaining treatment procedures or decision aids supporting shared decision-making [ 11 – 13 ].

Due to the complex character of the disease, HL in patients with cancer is generally restricted and associated with greater difficulties to understand tumor related information, poorer experience of care, and poorer QoL [ 9 , 14 ]. Limited HL has been associated with poorer health outcomes, including reduced adherence to treatment plans, more hospitalizations and higher mortality rates [ 15 ]. On the other hand, enhanced HL is linked to improved medical adherence, increased disease-specific knowledge and chemotherapy understanding, higher self-efficacy (SE), a preference for patient-centred care, and a greater willingness to engage in research [ 9 , 16 ].

It has also been therefore acknowledged that HL is associated with various Patient Reported Outcomes (PROs), including depression, QoL, anxiety and SE [ 17 – 19 ]. PROs are health outcomes reported directly by patients, without interpretation of a physician [ 20 ]. Through the assessment of PROs by actively engaging patients, PROs provide insights into the comprehensive impact of interventions. Hence, national plans and guidelines highlight the importance of HL and describe different goals focusing on improving PROs, especially QoL [ 21 – 23 ].

The National Library of Medicine (n.d.) defines an intervention as “A process or action that is the focus of a clinical study. Interventions include drugs, medical devices, procedures, vaccines, and other products that are either investigational or already available. Interventions can also include noninvasive approaches, such as education or modifying diet and exercise.”. Therefore, interventions focusing on HL by increasing knowledge through education and counseling, or helping to make decisions through decision aids and support patients in their disease management showed to be effective [ 1 ]. The core of these interventions relies on the transmission by HCPs whose support, guidance and expertise impacts patient engagement and HL. Therefore it improves QoL and SE and reduces depression as well as anxiety [ 24 ].

Patients often face unmet psychological (fear of cancer spread), informational, and physical needs [ 25 ]. HCPs serve as key sources of information, navigating patients through the healthcare system and play a pivotal role in supporting patients and their carers [ 22 ]. Nevertheless, knowledge alone is not enough – HL requires both skills of a patient and the efforts of a HCP. Patients need to be empowered to actively participate in their treatment through education and counseling by HCPs. This dual approach enables patients to gain knowledge about their disease and to acquire power as perceived capacity to participate in their cancer care [ 26 , 27 ]. However, to enable patients to be actively engaged in the treatment plan and decision-making, the role of HCPs in enhancing HL in cancer patients becomes inevitable. This involvement is essential for improving PROs by empowering patients through personalized decision support and information delivery [ 28 ].

Consequently, in the recent years, studies have focused on strategies to improve HL in cancer patients through the involvement of HCPs. These approaches aim to ensure that patients are better informed about their disease and treatment options. But it also means that they are able to apply health-related information, and are supported to maintain their own health [ 29 , 30 ].

It is not completely clear to which extent these HL-interventions delivered through HCPs showed to be effective in improving outcomes in cancer patients. The purpose of this systematic review is to explore the impact of HL-interventions delivered through HCPs on HL-related outcomes and outcomes reported by patients with cancer. Hence, this systematic review addresses the following research question and hypotheses:

RQ: What is the impact of HL-interventions on cancer patient-reported outcomes?

Cancer patients who receive interventions delivered by HCPs show an increase in HL or HL-related outcomes based on the adapted integrated conceptual model of HL (H1), a decrease in anxiety scores (H2), a decrease in depression scores (H3), an improvement in SE (H4) and an improved QoL (H5).

Methods

Protocol registration

We conducted a systematic review using the Preferred Reporting Items for Systematic Reviews and Meta-analysis (PRISMA) Guidelines and registered the protocol on PROSPERO (CRD42023482254) [ 31 ].

Search strategy

We applied the PICO (Population, Intervention, Comparator, Outcome) framework for our search strategy (Table 1 ) and developed the search strategy with experts (BM and DK) for the primary database Embase.com [ 32 ]. This strategy was extended to: MEDLINE (Ovid), Cochrane CENTRAL (Wiley), CINAHL (EBSCOhost), PsycINFO (Ovid), ERIC (Ovid), Web of Science Core Collection (Clarivate), Google Scholar, and ClinicalTrials.gov and peer reviewed (DK) using the Peer Review of Electronic Search Strategies Guidelines checklist (PRESS) [ 33 ]. Full search strings of each database are displayed in the Appendix A.

We screened National Institute for Health and Care Excellence (NICE), OpenGrey and Careum CH for grey literature to avoid publication bias. Manual searches were carried out until the end of January 2024: forward citation searches (to retrieve publications citing the included studies) and backward citation searches (reference list checking of the included studies).

We restricted the searches to articles published between January 2000 until January 2024 involving humans. The publication date restriction has been due to the beginning of research of HL in the last twenty years, which we confirmed through a test run of our search strategy in the selected databases by using different dates versus no restriction at all.

Eligibility criteria

We included studies with a quantitative or qualitative design including RCTs, Non-RCTs, Mixed Method Designs and qualitative studies addressing adult patients with cancer (at least 50% of the study population ≥ 18 years old) of all kind of cancer types and stages of disease. Studies which explored HL interventions delivered through HCP were included. HCPs in this review were defined as per the World Health Organization’s classification of health workers, encompassing all individuals primarily engaged in activities aimed at improving health, whether in clinical or supportive roles [ 34 ]. We included studies with interventions and non-invasive interventions which align the definition of intervention by the ClinicalTrials.gov [Internet] [ 35 ]. Qualitative and quantitative study designs were included. If the intervention was web-or app-based but HCPs have been involved in any way, the study was included. We included studies measuring the effect of such interventions on HL, HL-related outcomes based on the adapted integrated conceptual model of HL [ 10 ], anxiety, depression, SE and QoL. We excluded studies, which aimed to assess children or persons without any cancer diagnosis or animals. Studies which were delivered web- or app-based without any involvement of HCPs were also excluded. Full text should have been available in the second screening step in English or German language and duplicates were excluded.

A full view of the eligibility criteria is presented in Table 1 .

Study selection

We identified studies from the databases and removed duplicates using Deduklick. Deduklick uses a multistep algorithm of data and calculates a similarity score by identifying unique and duplicate references. These references are based on title, authors, journal, DOI, year, issue, volume, and page number range. After Deduplication we imported the records into the Systematic Review Tool Covidence™.

Two reviewers (MKF & NM) screened titles and abstracts independently for eligibility, while eligible studies were retrieved for full text and screened again by the same reviewers. Appraisal conflicts were resolved bilaterally and where consensus was not met, a third reviewer (AW) moderated the conflict discussions.

Quality assessment

Two reviewers (MKF & NM) assessed Risk of bias (RoB) of included studies which met the eligibility using the Mixed Methods Appraising Tool (MMAT) [ 36 ]. Disagreements were resolved through discussion. The MMAT is a quality assessment tool which consists of five categories of study designs: qualitative research, randomized controlled trials, non-randomized studies, quantitative descriptive studies, and mixed methods studies. We chose this RoB tool because of the heterogeneity of study designs of included studies in this systematic review. Studies with poor quality were not excluded but marked as studies with high RoB.

Body of evidence

Grading the overall body of evidence of this systematic review, two reviewers (MKF & NM) used the Risk of Bias in Sytematic Reviews tool (ROBIS) [ 37 ]. This tool consists of three phases: (1) Assessing Relevance, (2) Identifying concerns with the review process, (3) Judging risk of bias. Phase 2 is structured in four domains: (a) Study eligibility criteria, (b) Identification and selection of studies, (d) Data collection and study appraisal, (e) Synthesis and findings. Judgements can be made choosing ‘Yes’, ‘Partially yes’, ‘No’, ‘Partially no’, or ‘No information’.

Data extraction

We extracted data on study characteristics (author, year and country), sample characteristics (sample size, characteristics), intervention characteristics (intervention type, mode of delivery & time), outcome characteristics (outcome domain, outcome measures) and key findings.

Like in the study selection process, two reviewers (MKF & NM) performed full data extraction independently. Any discrepancies were resolved through discussion and when consensus could not be reached, a third reviewer (AW) made the final decision. The data extraction table is shown in the Appendix B.

Data synthesis

Due to heterogeneity in study designs we did not conduct a meta-analysis but performed a narrative synthesis using the SWiM-Checklist (Synthesis without Meta-Analysis) [ 38 ].

The narrative synthesis allows the comparisons of the included studies and the effect of their interventions on the main outcomes addressing the research question of this review.

First, we reviewed and categorized included studies by same outcomes of interest (Fig. 1 ). These categories were then discussed between first (MKF) and third reviewer (AW). We analyzed and combined the results within each category with the specific intervention characteristics. Finally, we compared the individual studies to gain additional insights into the collective results.

Results

Initially, a total of 12,120 records were identified across all databases. After deduplication, 6023 references remained and underwent title and abstract screening. We excluded 5788 references leaving us with 235 studies for full-text screening. During full-text screening, we excluded 205 studies for various reasons (Fig. 1 ). We identified one study through reference search in another systematic review [ 24 , 39 ]. Finally, we included 31 studies, which met the inclusion criteria, in this review. Full PRISMA-Flow diagram is displayed in Fig. 1 [ 40 ].

Study characteristics

Study characteristics are presented in Table 2 . The 31 included studies were published between 2006 [ 41 ] and 2023 [ 42 – 47 ]. 16 of the 31 studies were conducted in the United States (US) representing 51.6% of all included studies [ 39 , 41 , 46 , 48 – 60 ], followed by Australia (9.7%) [ 42 , 61 , 62 ], China (6.5%) [ 47 , 63 ], Germany ( 6.5%) [ 44 , 64 ], Iceland (3.2%) [ 43 ], Japan (3.2%) [ 65 ], Korea (3.2%) [ 45 ], Netherlands (3.2%) [ 66 ], Spain (3.2%) [ 67 ], Sweden (3.2%) [ 68 ], Taiwan (3.2%) [ 69 ] and United Kingdom (UK) (3.2%) [ 70 ].

Sixteen of the 31 included studies were randomized controlled trials (RCTs) [ 39 , 41 , 45 , 47 , 50 , 51 , 53 , 55 , 58 , 61 – 65 , 69 , 70 ]. Ten studies were non-RCTs [ 43 , 44 , 46 , 48 , 56 , 57 , 59 , 60 , 67 , 68 ]. Two studies used mixed method designs [ 42 , 54 ] and three studies were qualitative studies [ 49 , 52 , 66 ]. Sample size among the studies varied from 11 [ 66 ] to 645 participants [ 44 ] with ages ranging from 22.4 [ 42 ] to 71 years [ 55 ].

A wide range of different types of interventions were carried out. There were interventions focusing on education [ 42 , 44 – 48 , 54 , 56 , 57 , 60 , 62 – 64 , 67 ], consultation [ 39 , 55 , 65 , 66 , 68 , 70 ], patient management support [ 43 , 49 , 58 , 59 , 61 , 69 ] and decision aids [ 41 , 50 , 51 , 53 ]. Most of the interventions were delivered face-to-face [ 39 , 41 , 43 , 44 , 46 – 48 , 50 , 52 , 53 , 56 – 61 , 63 , 64 , 66 , 67 , 69 , 70 ]. One study used a multimedia education tool, in which surgeons showed an interactive 3-dimensional model and animated video of the patients’ cancer in the consultation. The surgeons then used annotations indicating the surgical plan. They also imported all the pre-operative scans into this tool and then provided a hard copy for the patients [ 48 ].

The duration of interventions ranged from 10 to 15 min [ 59 ] to 18 months [ 60 ]. Administers of the interventions were counselors [ 42 , 62 ], surgeons [ 48 , 50 , 66 , 70 ], persons as health workers helping patients to navigate the healthcare system defined as patient navigators [ 44 , 49 , 59 ], physicians [ 39 , 51 , 52 , 55 , 63 , 65 ], nurses [ 46 , 54 , 64 , 68 , 70 ], case managers [ 41 , 53 , 60 ], pharmacists [ 58 , 61 , 67 ], occupational therapists [ 69 ], radiation oncologists [ 45 ], psychologists [ 44 ] and three studies did not specify but referred to HCPs in general [ 43 , 47 , 57 ].

There were different outcomes measured. The most common outcome measured was knowledge/ comprehension [ 41 , 42 , 45 – 51 , 53 , 55 , 57 , 59 , 60 , 65 , 66 , 70 ]. The least common outcome measured was depression [ 44 , 61 , 70 ].

Risk of bias

Two reviewers (MF & NM) assessed RoB using MMAT. Quantitative non-RCTs showed problems in completeness of outcome data [ 41 , 47 , 50 , 53 , 61 – 64 ] and either difficulties in blindness of outcome assessors [ 53 , 61 , 64 ] or did not report it [ 41 , 50 , 55 , 58 , 62 , 63 , 70 ].

Nine of ten quantitative non-RCTs ( n = 90%) had problems with completeness of outcome data due to loss to follow-up [ 43 , 44 , 46 , 48 , 56 , 57 , 59 , 60 , 67 ].

In general, most of the studies showed medium to good quality thus none of the study can be rated as high risk of bias. Full table of RoB for each study design is displayed in Appendix C.

Effectiveness of HL interventions

After reviewing the included studies regarding their outcomes, we evaluated three main categories based on the hypotheses of this review: HL [ 42 – 44 , 47 , 54 , 58 , 62 , 68 , 69 ], HL-related outcomes [ 39 , 41 , 42 , 45 – 53 , 55 – 61 , 63 – 67 , 70 ] and PROs [ 42 – 45 , 48 , 50 , 51 , 55 , 57 , 58 , 61 , 62 , 65 , 69 , 70 ]. We subcategorized HL-related outcomes in: knowledge/ comprehension [ 41 , 42 , 45 – 51 , 53 , 55 , 57 , 59 , 60 , 65 , 66 , 70 ], adherence/ compliance [ 58 , 61 , 63 , 64 , 67 ] and communication [ 39 , 52 , 55 , 56 , 66 ]. The subcategories QoL [ 42 – 44 , 48 , 50 , 57 , 62 , 69 ], anxiety [ 44 , 45 , 50 , 51 , 61 , 65 , 70 ], SE [ 43 , 44 , 58 ] and depression [ 44 , 61 , 70 ] reflect the PROs .

Health literacy

Nine studies investigated the effect of their interventions on HL [ 42 – 44 , 47 , 54 , 58 , 62 , 68 , 69 ]. Interventions focusing on education found significant improvements of HL [ 42 , 47 , 62 ]. Allison et al. [ 42 ] explored the effect of a 60-page resource Education book about fertility combined with a consultation with a counselor with expertise in oncosexuality and found an increase of HL. Another study investigated the effect of their education resource intervention combined with a telephone consultation delivered through a counselor on HL and found that HL in total increased including critical HL [ 62 ]. A combined education intervention of a health education program on nutrition using video and information sheets and face-to-face delivery by a HCP also found significant improvements in HL [ 47 ]. Mirabella et al. [ 54 ] did not find any effect on HL and empowerment after their intervention which consisted of didactic instructions, written information, and supplementary video. However, participants reported to have the ability to reduce anxiety and that they felt empowered to ask questions. Non-significant effects on HL have been found on a combined web-based education intervention with voluntary utilization of a ring-folder and counseling [ 44 ].

In interventions based on management support, only one study showed significant differences of HL scores which was based on a tailored rehabilitation education program for postoperative patients with breast cancer administered by an occupational therapist. The management support focused on knowledge and skills training, examination of patients’ knowledge, explanation of exercises tailored to each patient’s ability, health education on prevention of physical complications and finally, training to return to work [ 69 ]. Skills training was conducted through a group-workshop led by a pharmacist and a social worker. The training included an introduction to medication adherence, skills to improve adherence and HL, identification to barriers of proper medication usage, and exercises [ 58 ]. A web-based intervention based on targeted information for self-management and cancer treatment, symptoms monitoring and a contact message portal with voluntary discussions with HCPs showed no effect on HL [ 43 ].

In studies with interventions based on consultations, one study explored the effect of an app-based intervention with combined telephone consultation led by a nurse. Patients reported their symptoms daily on the interactive pre-installed app. When a HCP was needed for emergency, a nurse called the patient to help managing the symptoms. The authors found improvement in communicative and critical HL (CCHL) at three months follow-up in the intervention group for the items: “I can select the particular information I need from a variety of information sources”, “I can determine if the information is credible”, and “I can, based on the information, plan and decide about what I need to do to improve my health” but no changes in functional HL (FHL) was found in either group [ 68 ].

Health literacy related outcomes

Different studies explored the impact of HL-interventions through education on HL-related outcomes (knowledge, adherence, communication) and found significant effects [ 46 , 60 , 63 , 64 , 67 ]. Improvements of knowledge could be achieved by education through a two-hours nurse-led education session about immunotherapy, which provided more personalized information. It showed improvement in cancer immunotherapy knowledge [ 46 ]. This education consisted of a written information explaining the differences in chemotherapy vs. immunotherapy, written sheets with drug information and explanation of an alert card. The alert card for patients allows them to call the cancer center, if they observed any adverse symptoms after receiving immunotherapy. It also provides clinicians with patients’ information and medical records. After receiving the written information, patients watched an education video about immunotherapy, how it works and its side effects [ 46 ]. Another nurse-led education intervention showed a significant increase of perceived self-reported accuracy of prostate-specific antigen (PSA) levels through education about cancer, assisting with care coordination and identifying needed resources [ 60 ]. Wang et al. [ 47 ] could show an improved knowledge through a teach-back education method on nutrition supplements after surgery in gastric cancer. Bickes et al. [ 49 ] introduced a teach-back checklist, where patient navigators asked patients about their next steps in cancer care, to evaluate their understanding which led to an enhanced knowledge through education. One study based on management support, where patients gained the ability to manage their symptoms and health behaviour, led by a patient navigator, also showed improvements in knowledge [ 59 ]. Ulloa et al. [ 59 ] investigated the effect of a survivorship wallet card for patients with detailed information about each participant’s cancer information. Only two studies focused on interventions based on decision aids for breast cancer patients to improve knowledge for making an initial surgery decision for cancer treatment [ 41 , 53 ]. While the interactive learning module instructed by a case manager in the one study showed improvements in knowledge of cancer treatment [ 41 ], the other study showed no such significant results [ 53 ].

Medication adherence could be improved especially through education combined with a reminder, empathic counselling and monitoring of medication refill on subjective but not on the objective measurement [ 64 ]. A pharmacist-led education intervention, which consisted of education about medication usage, reinforcement of adherence and evaluation of patients’ understanding showed enhanced adherence [ 67 ]. One study investigated their intervention on catheter maintenance. The intervention group received education about chemotherapy and its importance. Other patients, who recently received chemotherapy, were invited to give lectures, using visual methods like drawings and pictures. Patients were encouraged to also communicate with their families to reduce psychological burden. At a second step, optimal access for the catheter placement was evaluated with the patient and HCPs listened to complaints during this operation. After placement, patients received education cards and brochures about aftercare. HCPs used checklists to supervise each patient and their families. After this intervention, the compliance in the intervention group was significantly higher than in the control group [ 63 ].

Only one study focused on investigating the effect of a multidimensional, psychoeducation-based standardized cognitive rehabilitation program on communication with their HCP and self-management including preparation for consultations and couldn’t find significant changes in communication with physician among groups from before the program to the end of course until the 4-week follow-up [ 56 ]. When looking at interventions focusing on optimizing communication during consultations, two qualitative designs could show improvements in communicating with their physicians [ 52 , 66 ]. While Farias et al. [ 52 ] evaluated the communication with HCPs in open questions interviews, Van De Belt et al. [ 66 ] investigated the effect of a “patient-specific actual-size three-dimensional printed model” of their cancer in a consultation with their HCP. HCPs used this model to explain patient’s cancer and treatment options. Patients reported that the model helped them to understand their clinical situation and that they also could better explain their situation to family members. They mentioned that they better understood procedures and that it helped asking questions. In the contrary, a RCT study couldn’t show such significant effects in physician communication after their individualized in-depth radiotherapy and plan review intervention with breast cancer patients using tomography scan visualization [ 39 ].

Patient-reported outcomes

We found mixed results of studies investigating education interventions on PROs [ 42 , 44 , 45 , 48 , 57 , 62 ]. Allison et al. [ 42 ] showed a decrease in QoL scores after their 60-page resource education book about oncofertility combined with a consultation but higher scores in knowledge. No significant improvement of QoL and knowledge could be found after a multimedia intervention facilitated by surgeons, which consisted of an integration of a three-dimensional interactive model and animated video to explain the surgery procedure in a consultation [ 48 ]. A two-days patient symposium administered by different HCPs with a composition of general cancer education sessions and additional cancer specific breakout sessions, allowing patients to participate and ask questions to HCPs, did not show a significant change in QoL. However, improvements in nutrition and disease understanding, as well as knowledge of legal issues regarding disease and treatment were observed [ 57 ]. Significant results could be reached through a web-based knowledge database and ring folder educating patients on creating checklists for their clinical visits and provided cancer information. This intervention improved mental health related QoL (HRQoL) at six and nine months follow-up and depression scores at three, six and nine months follow-up but no changes in HL, anxiety and SE scores [ 44 ]. An education resource intervention combined with a 1-hour telephone consultation to answer patients’ questions which aroused after reviewing an 84-pages education resource improved total HL but significantly reduced QoL. Qualitative findings of this study showed increased knowledge, normalization of fertility concerns and confidence with communication in patients [ 62 ]. In an intervention based on management support, a web-based portal for patients increased QoL but showed no improvements of HL or SE [ 43 ]. Interventions using decision aids did not show effects on QoL and anxiety but a greater knowledge in patients, who received a picture option grid decision aid, which used simpler text and pictures compared to usual care to inform patients about their options [ 50 ]. A tailored rehabilitation education program led by an occupational therapist showed improvements in HL and a significant correlation with QoL [ 69 ].

Anxiety scores could be significantly reduced and knowledge improved by a virtual reality education about radiotherapy led by radiation oncologists [ 45 ]. This virtual reality tool consisted of a visual and audio education about different treatment environments and radiotherapy machines. Through this tool, patients could also witness another patient undergoing radiotherapy treatment, so that they get a concrete idea of what to expect [ 59 ]. Significant differences of anxiety and depression scores and medication adherence were observed through a teach-back pharmaceutical care program led by pharmacists [ 61 ], which contained documentation of medication history, identification of risk factors regarding medication, education sessions about the course of radiotherapy and usage of individualized decision aids tailored to patients’ HL levels [ 42 ]. Interventions based on consultation showed no impact on anxiety [ 65 , 70 ], depression [ 70 ] and SE [ 55 ] but on HL-related outcomes [ 55 ]. Sato et al. [ 65 ] explored the effect of using different consent forms: Those with detailed information and graphics, those with detailed information only, those with standard information including graphics, and those with standard information only. A patient-centered pathology report by Mossanen et al. [ 55 ] comprising visualization of cancer stage and easy to understand information about the cancer type and chances of recurrence, which was discussed with patients, showed improvements in provider communication and knowledge. Stephens et al. [ 70 ] investigated the effect of an audiotaped consultation with the physician. In an intervention using decision aids, they examined, if a simple written aid for deciding on the next steps in early stage prostate cancer was effective in improving knowledge and anxiety compared to a complex decision aid, written for higher grade reading level patients but showed no such effects [ 51 ]. No significant changes in SE, adherence and HL could be found after a medication adherence skills training through a group workshop [ 58 ].

Body of evidence

Two reviewers (MF & NM) assessed the overall body of evidence using ROBIS [ 37 ]. Both reviewers rated the four domains with low risk of bias, even though one sub-domain was rated as medium risk of bias due to restriction in eligibility criteria (publication date and language). Despite this restriction, the body of evidence of this systematic review was rated as low.

Discussion

By exploring the impact of HL-interventions delivered through on outcomes reported by patients with cancer this systematic review showed that knowledge was one of the most explored outcomes in the included studies and was improved in three of 16 studies [ 48 , 51 , 65 ]. The majority of studies investigated their interventions based on education, while others used either management support-, consultation- or decision aid-interventions. While previous systematic reviews have explored the impact of HL interventions in cancer patients, they have not specified the effect by considering PROs and the role of HCPs [ 9 , 24 ]. This systematic review differs by focusing on the integration of PROs and highlighting the critical role of HCPs facilitating these interventions. Unlike prior reviews, this systematic review emphasizes the importance of interprofessional teams in enhancing HL in cancer patients. Through a comprehensive literature search, 22 of 31 studies showed that different interventions had an effect on HL or HL-related outcomes [ 41 , 42 , 45 – 47 , 49 , 50 , 52 , 53 , 55 , 57 , 59 – 64 , 66 – 70 ] but mixed results in effectiveness concerning the impact on PROs. Interventions focusing on education showed to have a great impact on HL and HL-related outcomes, which supports our hypothesis that interventions designed to improve HL or HL-related outcomes administered by HCPs would have a positive effect on outcomes in patients with cancer [ 42 , 45 – 47 , 57 , 60 , 62 – 64 , 67 ]. Two studies (6.5%) showed adverse effects on QoL after the intervention which speaks against the hypothesis, that interventions may improve QoL. As an explanation for decreased QoL after the intervention authors reported that their interventions did not target primarily well-being or that their interventions induced oncofertility concerns in patients with cancer. Conversely, interventions based on management support improved QoL. These mixed results can be attributed to differences in goals in management support interventions and education-based interventions. While management support interventions focused more on skills training on improving QoL, education-based interventions focused more on knowledge improvements. Beyond these specific findings, the broader impact of interventions on QoL in cancer patients should also be considered. Knowledge acquisition and skills development are not only linked to improvements in higher QoL but also to emotional state, psychological and social factors. These factors influence a patient’s overall well-being. Therefore, future research should explore the longterm, holistic impact of HL interventions as well as taking into account various dimensions of QoL, including emotional support, social engagement and autonomy. Anxiety scores were reduced through education-based interventions [ 45 ] and interventions focusing on management support [ 61 ], but not through interventions based on consultation [ 65 , 70 ] or through the utilization of decision aids [ 50 , 51 ], what partly supports the second hypothesis, where we proposed a reduction of anxiety scores.Our hypothesis, that HL interventions would reduce depression scores (H3), was only partially confirmed. Similar to anxiety, depression scores were reduced by education-based [ 44 ] and management support interventions [ 61 ], but no effects were seen by interventions based on consultation [ 70 ].SE could not be improved across studies, contradicting our fourth hypothesis. This was consistent across education, management support, consultation or decision aids [ 43 , 44 , 55 ].

This lack of effect on PROs especially SE can be explained by different factors influencing PROs such as social and emotional support or positive expectation regarding treatment, which these interventions may not have specifically addressed [ 71 – 73 ]. Another explanation could be that the heterogenous measurement tools used in the studies were not sensitive enough to detect changes in PROs. For example, each one of the three studies measuring SE used a different scale to measure SE, which might have led to unexpected results [ 43 , 44 , 55 ]. These consultation- and decision-aid interventions aimed to improve knowledge, medication adherence, or communication, but they might not directly address QoL, anxiety, depression, or SE. Education can delve deeper in these PROs by, e.g., teaching how to reduce anxiety through educate about the disease. Alternatively, these interventions were always administered either by physicians, nurses or pharmacists, much less by psychologists. While physicians mostly are responsible for the transmission of medical information, and nurses focus on medical support, psychologists add a unique expertise in addressing psychological and emotional aspects of patient care. Uitterhoeve et al. [ 74 ] underlined the pivotal role of psychologists and their impact through interventions focusing on QoL by addressing the diverse needs in cancer patients and complexities of cancer care.

Therefore, findings of this review supported the view of HCPs serving as essential facilitators in improving HL or HL-related outcomes in cancer patients [ 75 ]. Through targeted and tailored interventions, HCPs support patients to actively engage in their treatment plans and care trajectory. Since patients often need information about and support for pain, sadness, difficulties in home-related tasks or fear of cancer spreading, the included studies show the importance of HCPs and a interprofessional team focusing on these needs to enhance PROs [ 76 ]. Despite the important role of communication with HCPs [ 77 ] only few studies aimed to investigate the effect of their interventions on communication [ 39 , 52 , 55 , 56 ].

Overall, the results showed to be very heterogeneous and no clear design of interventions proved to be effective. Studies that improved HL provided patients with knowledge orally or through books, with HCPs available for support and further explanations. Patients stayed independent and autonomous but still had guidance from HCPs if needed [ 42 , 47 , 52 , 62 , 68 , 69 ]. This finding underlines and supports the importance of handing over power to patients, so they can understand and apply health information and communicate with their HCP as needed [ 27 , 28 ].

In summary, interventions based on knowledge transfer and management support had a large impact on HL or aspects of it, with additional effects on PROs [ 43 – 45 , 61 ] which supports the definition of HL by Nutbeam (2000), that HL is built on knowledge transfer through education. Studies focusing on consultation and decision aids did not show such effects [ 39 , 41 , 50 – 53 , 55 , 66 , 68 ]. This contradicts previous studies showing a relationship between HL and PROs [ 17 – 19 ]. With the exception of two studies [ 39 , 66 ], these interventions had one thing in common: In these interventions, patients were left alone with medical material, without support from a HCP. They were either given a patient-centered pathology report, a simple written decision aid or an app. Van De Belt et al. [ 66 ] introduced a three-dimensional tumor in the consultation. However, the lack of effects on PROs can be explained by the fact that patients might be emotionally overwhelmed or confronted. This explanation also applies to the findings of Dyer et al. [ 39 ].

Strengths

A strength of this review is a) the adherence to the PRISMA reporting guidelines [ 31 ] and b) the use of the SWiM guidelines for the narrative synthesis [ 38 ], c) a robust and detailed search strategy operationalized with the PICO framework and d) a comprehensive literature search across seven different databases including search for grey literature, which enabled a thorough scope of relevant studies. Screening and data extraction process, the application of MMAT and the assessment of the overall body of evidence by two independent reviewers could minimize errors, and allowed a comprehensive evaluation of the review process.

Limitations

Nevertheless, this review also has some limitations. Due to language restriction in the eligibility criteria to English and German written papers, this may introduce a language bias and may have led to exclusion of relevant studies published in other languages.

Another limitation is the inclusion of only published papers, which may have resulted in publication bias. Due to heterogeneity of intervention types and outcome measures of studies and since we designed the review broadly in order to get an overview of the field, we could not evaluate the results specifically by calculating a meta-analysis. The subjective categorization of the interventions and the partly missing reporting of effect sizes in the included studies may have also led to invalid results.

Further, the studies that reported on SE mainly offered basic descriptive information, which did not contribute significantly to the broader understanding of the intervention’s impact. As a result, the potential role of SE therefore remains unclear.

Clinical implications

This less consistent pattern of findings highlights the importance incorporating HL interventions in routine care and training of HCPs by delivering education. Tailored interventions directly towards PROs such as depression, anxiety, SE or QoL should be promoted. Although this review explored the relationship between HL and PROs such as anxiety, depression, QoL and SE, the studies included did not sufficient detailed information on how these interventions mitigated these issues. Given the significance of PROs future research should aim to incorporate more targeted interventions designed to address the emotional and psychological aspects of cancer care. This review underscores the importance of the utilization of a multidisciplinary team, including especially psychologists, to address not only information needs but also emotional and psychological needs. Due to a lack of studies focusing on communication between patient and physician, more in-depth research in this area is warranted. In general, still more research on the effects of HL interventions facilitated by HCPs on PROs is needed to understand the mechanisms.

Conclusion

This review contributes valuable insights to the impact of HCPs-delivered HL-interventions on PROs and partly supports the hypotheses that they are having an impact on HL, HL-related outcomes, QoL, depression, anxiety or SE. Specifically interventions focusing on education and management support showed significant improvements in QoL, depression and anxiety primarily allowing patients to maintain their autonomy and independence but still be guided by HCPs. This approach in interventions supports the idea of patient empowerment. Nevertheless, findings were heterogenous, with some studies showing no impact on PROs, especially those focusing on consultation or decision aids, which lacked on sufficient HCP guidance and support These mixed results suggest that the effectiveness of HL interventions depends on the type of intervention, with management support and educational interventions being more effective in addressing both informational and emotional needs of cancer patients. Detected gaps in this review supports the postulate of promoting HL to optimize cancer care. This review highlights the importance of multidisciplinary collaborations to address psychological needs to enhance PROs. Further research in HL and its effect on PROs to understand the full impact and different influential factors, comprehensive and tailored interventions and innovative approaches are required to meet patients’ needs.

Supplementary Information

Supplementary Material 1.

Acknowledgements

The psychological student Nikki Merz (NM) should be acknowledged and thanked for her contribution the project in screening the studies and helping extract the data. There was no funding or any financial support of this research project. Myrofora Goutaki (MG) and Jennifer Inauen (JI) should also be thanked for reviewing and supervising this paper and Doris Kopp-Heim (DK) should be acknowledged for her contribution to data curation and software management.

Abbreviations

Healthcare professional

Health literacy

Health related quality of life

Mixed Methods Appraising Tool

Population, Intervention, Comparator, Outcome

Peer Review of Electronic Search Strategies Guidelines

Preferred Reporting Items for Systematic Reviews and Meta-analysis

Patient-Reported Outcome

Quality of life

Self-efficacy

Risk of bias

Risk of Bias in Systematic Reviews

Research question

Synthesis without Meta-Analysis

Authors’ contributions

**Malui K. Frei (MKF): ** Conceptualization, data curation, formal analysis, investigation, project administration, Visualization, writing – original draft, writing – review & editing; **Alexander Wünsch (AW): ** Conceptualization, project administration, resources, supervision, validation, writing – review & editing; **Marie-Luise Fontana (MLF): ** Conceptualization, writing – review & editing; **Gieri Cathomas (GC): ** Conceptualization, writing – review & editing; **Beatrice Minder (BM): ** Data curation, software; **Monica Fliedner (MF): ** Writing – review & editing; **Martin D. Berger (MB): ** Writing – review & editing.

Funding

There was no funding contributing to this systematic review.

Data availability

All data supporting the findings of this study are available within the paper and its Supplementary Information.

Declarations

Ethics approval and consent to participate

Not applicable.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.

Footnotes

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Marie-Luise Fontana and Alexander Wünsch contributed equally to this work.

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Associated Data

Supplementary Materials

Supplementary Material 1.

Data Availability Statement

All data supporting the findings of this study are available within the paper and its Supplementary Information.