Health-related quality of life domains relevant to people in Europe undergoing cancer treatment: a systematic review of qualitative research.

Plain English summary

Patients undergoing cancer treatment in Europe report many concerns that go beyond their physical symptoms. While traditional quality of life questionnaires often focus on symptoms and functioning, the 36 qualitative studies of our systematic review show that psychological well-being and experiences with the healthcare system are especially important to patients undergoing cancer treatment. The psychological well-being was the most mentioned aspect in the included studies, showing its key role from the patients’ perspective. Patients also highlighted the need for clear and personalized communication, respectful and coordinated care, and being involved in treatment decisions. Our findings show the importance of expanding the content of health-related quality of life measuring tools to better reflect what matters most to patients receiving cancer treatment in Europe, helping health professionals and policymakers improve the support provided throughout the cancer process.

Introduction

The number of cancer diagnoses is expected to rise, with projections estimating an increase of 22.5% in Europe and 63.4% worldwide by 2045. In 2022, Europe accounted for 4.5 million new cases (22.4% of the world’s cases) despite representing only 10% of the worldwide population [ 1 ].

Patient-reported outcome measures (PROMs) has been defined as “any report of the status of a patient’s health condition that comes directly from the patient, without interpretation of the patient’s response by a clinician or anyone else” [ 2 ]. It is an umbrella term that covers different types of outcomes, such as symptoms, activity limitations, health status, health-related quality of life (HRQoL) and quality of life [ 3 ]. There is consistent evidence that the integration of PROMs into cancer care may improve overall survival and HRQoL [ 4 – 7 ]. People undergoing curative or life-prolonging cancer treatment face specific challenges, with symptoms and needs often fluctuating rapidly and treatment cycles significantly impairing their health-related quality of life (HRQoL) [ 8 – 11 ]. The integration of PROMs into cancer care enhances healthcare professionals’ awareness and enables early identification and management of unmet needs during treatment [ 12 , 13 ], resulting in improved HRQoL and clinical outcomes, reduced unplanned hospitalizations [ 14 , 15 ], and, in some cases, increased survival [ 4 , 6 , 12 , 16 ].

Despite this evidence, the monitoring of perceived symptoms and HRQoL remains underutilized in this population [ 17 ]. Advances in technology facilitate a broader implementation of HRQoL and other PROMs with a reduced administrative burden [ 18 ]. However, their limited adoption in routine oncologic care may stem from the content of the existing ones, which often either fail to fully reflect the evolving needs of this population or lack a clear applicability for clinical management and quality assessment [ 19 , 20 ].

Moreover, the introduction of novel avenues for treatment—such as immunotherapy, targeted treatments, minimally invasive surgeries, and multimodal therapies—has transformed and further diversified the experiences of patients receiving cancer treatment [ 21 ] and the practical challenges they face [ 8 , 22 ]. Frequent disruption of work and family life, accompanied by increased financial burdens, are some of the main practical challenges identified [ 23 ]. In this context, qualitative research has become essential for identifying emerging needs, concerns, and preferences among patients [ 24 ]. Incorporating such evidence from qualitative studies is crucial for the development of more relevant, patient-centered PROMs.

Despite the exponential rise in systematic reviews of qualitative studies in recent years, most published reviews are either tumor-specific or narrowly focused on specific aspects of the experiences of the cancer journey, such as one centered in studies of HRQoL in breast cancer patients [ 25 ], or another one on benefits and challenges of cancer peer support groups [ 26 ]. Nevertheless, none have addressed HRQoL constructs relevant to all patients undergoing cancer treatment. As a result, a comprehensive synthesis of qualitative research is still needed to identify HRQoL issues for this population.

The aim of this systematic review was to identify and synthesize evidence on cancer-related quality of life outcomes, needs, experiences, preferences, and concerns of people undergoing cancer treatment, from qualitative studies conducted in the last decade in European countries. This review presents one of the first steps of the ‘Quality of Life in Oncology: measuring what matters to cancer patients and survivors in Europe’ project [ 27 – 30 ], aimed at developing and validating a new questionnaire (EUonQoL-kit) to assess HRQoL in patients across the cancer care continuum in Europe. Although our final aim was to contribute to the development of a new HRQoL instrument, the focus of the systematic review was wider, to avoid the loss of relevant aspects due to the misuse of, and the confusion surrounding, concepts related to the term ‘quality of life’. The synthesis of the qualitative evidence from this review, along with one focusing on people surviving cancer [ 31 ] and one on patients in need of palliative care [ 32 ], have contributed as sources of information for the selection of dimensions in the development process of the EUonQoL-kit. Lastly, this systematic review could also be of interest for the development of other HRQoL instruments designed specifically for people undergoing cancer treatment, particularly for identifying domains that are often underrepresented in traditional HRQoL conceptual models.

Methods

This study is a systematic review, presented in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines (supplementary checklist) [ 33 ], with a registered protocol (CRD42024575065; https://www.crd.york.ac.uk/PROSPERO ).

Eligibility criteria

Studies were eligible if they employed qualitative methodologies, including mixed-method designs, and explored cancer-related quality of life outcomes, needs, preferences, concerns, or worries among persons undergoing cancer treatment. This included both curative treatments for early-stage cancers and non-curative tumor-directed therapies aimed at disease control or life prolongation in advanced or metastatic cases. Only peer-reviewed articles published in European languages were considered, with study populations drawn from the 27 European Union (EU) member states, the United Kingdom (UK), and 11 associated countries (full list of countries in supplementary Table 1).

Studies were excluded if they focused on children, adolescents, or young adults diagnosed with cancer at or below the age of 39 [ 34 ]; individuals surviving cancer or in need of palliative care; patients with multimorbidity; caregivers, partners or healthcare professionals; on tumor site-specific issues; or if data collection occurred exclusively before 2013, to capture the present situation of people undergoing cancer treatment after the introduction of relevant novel therapeutic procedures (i.e. immunotherapy, ambulatory administration of chemotherapy…) in the last decade that have changed their lived experiences.

Information sources

An initial search was carried out in the MEDLINE database via PubMed on March 6th, 2023. This search was later updated on July 8th, 2024, and expanded to include both MEDLINE and Scopus databases.

Search strategy

Supplementary Table 2 shows how the search strategy was structured into four main components: (1) population type, including individuals in any cancer care phase; (2) pathology, specifically neoplasms; (3) constructs of interest, such as quality of life or health status; and (4) terms addressing relevant issues such as preferences, concerns, or worries. In PubMed, both MeSH terms and free-text keywords were used to enhance sensitivity.

Several search strategies were evaluated to ensure that no qualitative studies were missed due to variations in terminology or indexing, and the final selection was based on comparing the sensitivity of two approaches to include well-known studies in the field: MeSH subheading–restricted search versus a wider strategy. The latter strategy was chosen because it produced 16% more references and higher capacity for including the relevant studies used for test.

Although the abovementioned search encompassed the full cancer care continuum as part of the EUonQoL project, the present report focuses specifically on individuals undergoing cancer treatment, given the distinct nature of their experiences compared to those of patients surviving cancer [ 31 ] or in need of palliative care [ 32 ].

Selection process

The screening process was managed using Covidence™ software ( www.covidence.org ). Each title and abstract was reviewed independently by two out of six researchers (CAF, CLB, OG, MF, LRC, MT), and discrepancies were resolved through discussion, with the involvement of a third reviewer.

Data collection process

Full-text review and data extraction were independently conducted by two out of eight reviewers (CAF, CLB, OG, YP, LRC, MT, OPC, PNS) for each article, using a customized extraction form developed specifically for this review. To ensure accuracy and completeness, a third researcher reviewed and validated the data extracted and resolved discrepancies.

Data items

The extracted data encompassed three main categories: study characteristics (author, aim, design, country and year of data collection, recruitment strategy, theoretical approach, and qualitative methodology); sample characteristics (tumor location, size, age, sex and stage of treatment); and reporting information (qualitative research guidelines followed, data saturation, and themes, subthemes, and verbatims). For mixed methods studies, only the information of the qualitative part was extracted for the analysis.

Study risk of bias

The risk of bias in the included studies was assessed using the Specialist Unit for Review Evidence Qualitative Studies Critical Appraisal (SURE) checklist [ 35 ]. This tool comprises 10 items, each rated as ‘Yes’, ‘No’, or ‘Can’t tell’. The same researchers who performed data extraction conducted this appraisal. Studies receiving a ‘No’ rating on three or more items were categorized as being of ‘poor quality’, acknowledging that the SURE checklist does not provide an overall score.

Outcomes

The primary outcomes of this review were the themes and subthemes identified in the included studies (along with specific verbatims when relevant), which were extracted literally from the source articles to preserve the original meaning and minimize interpretive bias.

Synthesis methods

The synthesis was based on Wilson and Cleary’s original conceptual model of health-related quality of life (HRQoL) [ 36 ] and the Ferrans et al. 2005 revision [ 37 ], one of the most widely accepted frameworks in this field [ 38 ], since it also guided the development of the EUonQoL-kit. A thematic analysis was conducted by a team of researchers in two sequential phases: first, a deductive phase to organize the extracted themes and subthemes within the predefined domains of the Wilson and Cleary framework; and second, an inductive phase to identify emergent subcategories arising from the data coded in the original studies without trying to fit into any preexisting frame, following an iterative process until consensus was achieved [ 39 ]. In both phases, triangulation of the analysis was performed by 4 researchers—a physician, a biologist, an exercise physiologist, and a pharmacist—who had no experience in treating patients with cancer. Therefore, their preconceptions were shaped mainly by the literature review, and rather than attempting to set aside these preconceptions, the team explicitly acknowledged them by comparing the results of our systematic review with the Wilson and Cleary framework and critically engaged with them to enrich the interpretative process. The procedural rigor applied —including the triangulation by researchers with diverse health sciences backgrounds and qualitative methods knowledge and the interdisciplinary research team’s reflexivity—ensures the findings’ validity, and reliability.

Reporting bias assessment

To address potential reporting bias, a sensitivity analysis was intended by repeating the synthesis using only studies considered to be of good quality (with fewer than three SURE items rated as 'No'). To minimize the overrepresentation of narrowly focused studies in the overall synthesis, the primary analysis was restricted to studies with a generic objective on cancer-related outcomes, and secondary analyses were performed on studies with specific objectives. We defined studies with a generic objective as those that explored broad experiences, needs, preferences, concerns, or quality-of-life issues among people undergoing cancer treatment, without focusing on a single predefined construct. In contrast, studies with a specific objective were defined as those targeting a particular construct or topic (such as psychological distress or spiritual well-being).

Results

Study selection

A total of 18,256 articles were identified across PubMed and Scopus. Detailed information of the study selection process is described in the PRISMA flowchart (Fig. 1 ). After screening titles and abstracts, a complete full-text review of 1,207 manuscripts was carried out. The most frequent reasons for exclusion of studies at this phase were: not in the list of countries included (29.5%), not including a qualitative study design (17.8%), children, adolescents and young adults (14.4%), data collected prior to 2013 (14%), and not including outcomes of interest (10%). Finally, 36 qualitative studies on people undergoing cancer treatment fulfilled the inclusion criteria, 32 of which were purely qualitative and 4 were mixed-methods studies combining qualitative data with surveys: 3 with HRQoL questionnaires and one with importance ratings.

Study characteristics

A summary of the studies’ characteristics is shown in Table 1 . The countries in which more studies had been conducted were the UK (n = 10), Denmark (n = 8), the Netherlands (n = 6) and Sweden (n = 5). The data collection method most often used was semi-structured interviews (n = 25), and the most frequent samples were patients with various tumor locations (n = 11), hematological (n = 8) and prostate neoplasms (n = 5). Women represented 28–74% of the sample in 30 non-gender related cancer studies. Treatment stage was curative in 13 studies, non-curative treatments for advanced or metastatic cancers in 12 studies, active surveillance in 3 studies, and various stages of treatment in 8. A substantial portion of the studies aimed to explore cancer-related outcomes, experiences, needs, concerns, preferences and quality of life of people in treatment through generic objectives (n = 21) [ 40 – 60 ], but 15 studies focused on specific objectives: 11 on clinical management [ 61 – 71 ]; 2 on psychological distress [ 72 , 73 ], 1 on working situation [ 74 ], and 1 on pain [ 75 ].

Risk of bias in studies

Supplementary Table 4 shows the detailed completion of the SURE checklist [ 35 ]. All 36 studies discussed ethical issues, made an appropriate choice of the qualitative methodology, and properly described and justified the analysis and interpretation process. More than 90% of the studies addressed a clearly focused question or hypothesis, presented credible findings, reported whether they had any conflict of interest, correctly identified the study’s limitations, and clearly described their method of data collection. Sampling strategy was specified by 72.2% of studies, whereas the relationship between the researcher and the participant was reported in 33.3% of them. Only one study, focusing on how to help young people with cancer regarding their care needs, was assessed as ‘poor quality’ [ 40 ]. The sensitivity analysis was not performed because none of the themes from this study made up a significant part of any subcategory of the primary thematic analysis.

Results of individual studies

Table 2 shows the characteristics and themes identified in the studies with a generic objective, and supplementary Table 3 shows the information for those with a construct-specific objective. The 21 qualitative studies with a generic objective were mostly published in 2021–2024, with sample sizes ranging from 3 to 158 participants, and the number of themes was 90, ranging from 2 to 9 in each study. Supplementary Table 3 details the 67 themes emerging from studies with a specific objective, their sample sizes ranging from 7 to 48: 52 themes from studies focusing on clinical management, 7 from the studies on psychological distress, 4 from the study centered on the working situation and 4 from the one exploring pain.

Results of synthesis: primary thematic analysis of studies with generic objectives

Figure 2 integrates the findings of the thematic analysis within the conceptual model proposed by Wilson and Cleary [ 36 ], in which HRQoL is conceptualized as a multidimensional construct encompassing five interconnected components: Biological Function, Symptom Status, Functional Status, General Health Perceptions, and Overall Quality of Life. Alongside these 5 components, the Characteristics of the Individual and Environment are placed in parallel above and below the main line.

The 5 categories identified in the analysis of the 21 studies with a generic objective are visually representeds in rounded shadowed boxes, mapped onto the corresponding components of the framework. Symptoms & Physical Function’ corresponds to Symptom Status, ‘Psychological Function’ and ‘Social Function’ primarily align with the component of Functional Status, and ‘Life Disruption’ corresponds to General Health Perceptions. Finally, the emerging ‘Clinical Management’ category was conceptually distinct from the main line of components of the original model and is therefore represented outside of it, aligned with the component Characteristics of the Environment. Table 3 presents the detailed thematic synthesis, with the 110 themes, subthemes or verbatims aggregated into the five overarching categories.

Psychological function

This category included the largest number of themes (41 out of 110), with 37 grouped under 3 subcategories: ‘Coping with cancer and the new reality’, ‘Worries and fears related to treatment and controls’ and ‘Fearing and expecting death’. Only 2 themes in ‘Shock of diagnosis’, and 1 in ‘Reminders’ subcategories.

A1. ‘Coping with cancer and the new reality’ includes 20 themes describing how individuals prepared for treatment, adjusted to physical and mental changes, recognized emotional impact, regained abilities and embraced new opportunities, with several coping strategies:

“A new project, new ideas, new beginnings… Before I had cancer, I would have said, ‘Oh no, get someone else to [refurbish the boat]’… but I said, ‘OK, yes, why not? I’ll do it.’” [ 42 ]

A2. ‘ Worries and fears related to treatment and controls’ includes 11 themes describing emotional responses to treatment and monitoring, as well as feelings of uncertainty about the future and of anxiety related to test results. Participants reported ongoing fear, emotional disequilibrium around diagnosis and follow-up, and an emotional strain linked to less common or stigmatized cancer types. One participant explained:

“If causing me too much worry, it would eventually push me into mentioning it, whether it was pain or struggling mood-wise.” [ 45 ]

A3. ‘Fearing and expecting death’ includes 6 themes regarding the sudden change in life expectations, the consideration of unsuccessful life-prolonging treatment, the never-ending uncertainty of disease progression, and the thoughts of leaving their families and the burden they will have to carry.

Clinical management

This category included 26 themes grouped mainly into three subcategories: ‘Information, communication and coordination with healthcare services’; ‘Interaction with healthcare professionals’; and ‘Patient involvement in care’.

B1. The 7 themes in ‘Information, communication and coordination with healthcare services’ described the need for clear, timely, personalized communication, having clarity in care processes, and discussing persistent symptoms with professionals, as reported by a participant:

“I think I should discuss the symptoms with the doctors when these symptoms have lasted for some days and do not disappear.” [ 45 ]

B2. ‘Interaction with healthcare professionals’ includes 7 themes focusing on the quality of interactions, limited time for individualized attention, and the importance of privacy. Participants described both supportive and alienating encounters:

“The nursing staff does not have the time necessary to listen properly to the patients, allow them to vent, and for the person to say whatever they need.” [ 41 ]

B3. ‘Patient involvement in care’ themes described how patients engaged in their care, making treatment decisions based on prognosis, adapting behavior according to medical advice, and seeking empowerment through information. One participant reflected:

“Sometimes you have to decide within 4 h for the rest of your life! [regarding a fertility‐saving surgical procedure]” [ 54 ]

Symptoms & physical function

C1. The 11 themes in ‘Treatment-related symptoms’ described a range of physical symptoms attributed to cancer or its treatment, such as fatigue, gastrointestinal issues, cognitive changes, and side effects from medication or medical devices. A participant expressed:

“A battery is the fatigue … the fatigue has hit me hard … more so than anything else because that affects everything that you do and what you can manage to do in a day.” [ 42 ]

C2. The 7 themes in ‘Living with constraints’ highlighted limitations in daily activities participation due to physical symptoms or reduced energy causing the need to adapt routines:

“I actually do the same things as I used to, but I do them slower, and I may only manage half.” [ 48 ]

Social function

This category included 16 themes grouped into 4 subcategories: ‘Social support’ (7 themes), ‘Social relationships’ (6 themes), ‘Emotional impact on relationships’ (2 themes), and ‘Work and financial concerns’ (1 theme).

D1. ‘Social support’ referred to the importance of networks of partners, family and friends, and their reliance on other people for their basic activities:

“… without her [wife], it wouldn’t have been such an experience for me where I felt confident about going forward.” [ 44 ]

D2. ‘Social relationships’ emphasized the possibility to stay at home, to maintain the sense of normalcy, as well as the social engagement with fellow patients.

Life disruption

This category included 9 themes describing the sudden change in lifestyle, relationships, self-identity, mental health, and their social and work life, as well as their difficulties in adapting to these changes and the uncertainty of the prognosis:

“When it seemed certain that I was going to die, it was super intense. Then it turned out that there’s therapy, which could make me live for another two or three years. That was very nice, yet also difficult, because it is also very uncertain.[…] It’s like death row without an execution date.” [ 60 ]

Results of synthesis: secondary thematic analysis of studies with specific objectives

The results of the thematic analysis from the 15 studies with specific objectives are shown in supplementary Tables 5–8. Supplementary Table 5 shows the thematic analysis for the 11 studies focused on clinical management, from which 41 themes emerged, mostly in the subcategories ‘Information, communication and coordination’ (14 themes) and ‘Unmet needs’ (15 themes), both subcategories present also in the primary thematic analysis. Interestingly, a new subcategory of ‘Individual emotional support’ emerged within the ‘Psychological function’ category. Supplementary Table 6 presents the results from studies centered on psychological aspects, in which 6 out of the 13 themes identified were classified under the category ‘Clinical management’, and 4 of the themes under ‘Social function’. The thematic analysis of the study focused on work, in supplementary Table 7, resulted in 3 out of the 4 themes classified under ‘Social function’. Supplementary Table 8 shows the thematic analysis from the single study focused on pain revealing 4 themes distributed among the categories of ‘Psychological function’, ‘Symptoms & physical function’, and ‘Social function’. Finally, the supplementary figure illustrates that the pattern of results of these secondary analyses is similar to the results obtained in the primary analysis.

Discussion

The review of qualitative studies on outcomes, needs, experiences, preferences, concerns, and quality of life for people in Europe in active treatment for primary or metastatic cancer identified 36 studies that met the inclusion criteria from the 18,256 articles found in the literature search. The primary thematic analysis of 110 themes or subthemes from the 21 studies with a generic objective revealed that the majority aligned with Wilson and Cleary’s Symptoms and Functional Status domains (‘Symptoms and Physical Function’, ‘Psychological Function’, and ‘Social Function’ categories), while only the category ‘Life Disruption’ was classified in the general health perceptions domain. Interestingly, the ‘Clinical Management’ category arose as an important concern outside the original framework domains. Moreover, in the 15 studies with specific objectives, the most frequently explored subject was the experience with clinical management, addressed by 11 studies which generated 52 themes.

‘Psychological Function’ emerged as the most prominent category in the thematic analysis of the studies involving people undergoing active cancer treatment, appearing frequently across those with generic objectives and those with specific ones. After the initial shock of diagnosis, themes related to coping with cancer and adapting to the new reality were the most frequently identified, even more so than those concerning worries, distress and anxiety related to treatment and monitoring or fears about disease progression. These findings are consistent with systematic reviews showing that emotional adjustment and coping strategies have a great influence on the psychological wellbeing during cancer treatment [ 76 , 77 ], as well as with other chronic conditions [ 78 ], whereas psychological distress—particularly related to treatment burden and persistent emotional challenges—is frequently also reported in this population [ 79 ].

The ‘Clinical Management’ category emerged importantly in this review, being the second most prevalent category of themes in studies with a generic objective. The contents of this category were aligned with the ‘Characteristics of the environment’ component, which has the role of influencing the components in the main line, from Biological Function to Overall Quality of Life. In addition, the 11 studies that aimed specifically to explore clinical management issues further underscored the relevance of this domain for stakeholders in the health care and research fields. The key themes identified are consistent with a previous systematic review synthesizing patients’ perspectives on supportive care, which found the need of communication with healthcare professionals and for high-quality, comprehensible and timely information about their illness and treatments [ 80 ]. Likewise, a review focusing on operationalizing patient-centered cancer care highlighted care coordination, shared decision-making, and information delivery as essential elements [ 81 ].

Similarly to the conclusions from the systematic review on people surviving cancer [ 31 ], these findings support that HRQoL instruments addressed to people undergoing cancer treatment should also cover how the needs and experiences lived in clinical management affect HRQoL. The predominance of this subject among qualitative studies is consistent with emergent patient-centered care approaches, but clinical experiences are often not covered in HRQoL instruments due to generally being considered covered by patient-reported experience measures (PREMs). The main difference between PROMs and PREMs is what the instrument aims to cover: a PREM aims to capture the experience of a patient with the care received, as perceived by the patient themself [ 82 ], that is ‘what happened’, whereas a PROM aims to know how experiences related to the disease and their treatment affect the patient’s outcomes. Therefore, the patient’s experience when undergoing cancer treatments can have an impact on their HRQoL, and its incorporation into PROMs aligns with patient-centered care.

‘Symptoms & physical function’ was the third category in number of themes arising from studies with generic objectives. Themes in this category were divided into two subcategories: symptoms derived from treatment and constraints of everyday activities due to the illness and its treatment. Both are usually well covered by traditional PROMs, such as the EORTC-QLQ-C30, the FACT-G and their tumor-specific modules [ 83 , 84 ]. While the relative position of this category is consistent with the systematic review of people surviving cancer [ 31 ], the direction of its themes differs clearly, as cancer survivors intended on returning to their activities from before the disease and were dealing with the lingering physical and cognitive challenges post-treatment.

The’Social function’ category comprises a few themes about the impact of the disease on their relationships, work, and economic worries, though mainly the themes are related to the relationships with and support from family and close friends. Although social support originates externally to the individual, participants described it as an integral part of their lived experience during treatment, and it is the subcategory with the most themes in the ‘Social function’ category of the primary thematic analysis. There were also several social themes that emerged from studies focused on clinical management and psychological aspects. The ‘Work and financial concerns’ subcategory was more present in the secondary thematic analysis, given that one study was focused entirely on work. Work concerns also emerged as a particularly relevant aspect among people surviving cancer [ 31 ], including the working disability, the limitation of professional careers and the working relationships. This category highlights the importance for patients’ HRQoL of the relationship they have with the people they are closest to, depending on other people, and embracing the help from others.

The ‘Life disruption’ category emerged within the General Health Perceptions domain of the Wilson & Cleary framework, as also observed in the systematic review of people surviving cancer [ 31 ]. The themes included in this category comprise topics with negative connotations such as life interruption, the psychological impact of a changed identity, or the challenges of accepting their altered lifestyle.

The results of the systematic reviews of qualitative studies for each population in the cancer continuum [ 31 , 32 ], a systematic review of existing PROMs [ 85 ], patient interviews, and a Delphi study [ 28 ] have been the sources for the development of the EUonQoL-kit. The information obtained from the above-mentioned studies, which were conducted in parallel, was combined into a master cross-tabulation, and reviewed in consensus meetings where each subdomain was rated for inclusion in the EUonQoL-kit, using the Nominal Group Technique (NGT) [ 86 ]. The purpose of using diverse sources of information and applying NGT was to ensure both the comprehensiveness and the practicability of the resulting EUonQoL-kit. For example, the inclusion of the subdomain ‘Physical Health – lack of energy’ was supported by the systematic review of qualitative studies on patients in active treatment, the systematic review of existing PROMs, and findings from the patient interviews and the Delphi consensus, resulting in a high NGT score, and thus being included in the item list.

Strengths and limitations

First, the studies meeting our inclusion criteria do not encompass all European countries. Published data were available from only 6 of the EU-27 and 2 associated countries. Consequently, the evidence synthesized in this review have a notable lack of information from people in central and eastern Europe. Secondly, publication bias may have caused an underrepresentation of studies reporting only traditional domains of HRQoL, as these topics might be perceived as less novel and thus less likely to be published in peer-reviewed journals. Third, the initial search was broad to maximize sensitivity, which implied a large number of references to screen and review, increasing the need for reviewers. However, the research team trained reviewers in the inclusion and exclusion criteria to avoid differences among them. The training was conducted always by the same researcher, and each article was reviewed, at least, by one of the first or last authors. Fourth, many of the included studies were designed to cover construct-specific objectives selected by researchers or health managers, rather than broadly exploring quality of life issues relevant to individuals undergoing cancer treatment. To minimize the risk of overemphasizing findings from these narrowly focused studies, our primary thematic analysis was based on results from studies with a general scope.

A strength of the present systematic review is that most of the studies included provide up-to-date information, with 58% published between 2021 and 2024, thereby reflecting the current experience of people undergoing cancer treatment nowadays. Furthermore, an ad-hoc exploration of the results of the main thematic analysis stratified by treatment stage was undertaken to elucidate if patients reported different unmet needs or concerns across the treatment timeline. All identified categories contained at least one theme originated from a study representing each treatment stage (curative, non-curative treatment, active surveillance, and various stages).

Lastly, nearly all studies were assessed as ‘good quality’, fulfilling at least 7 of the 10 SURE checklist criteria, and 11 studies meeting all 10 criteria. Considering these strengths, findings from this systematic review have a high value when selecting relevant content for the development of new PROMs for people undergoing cancer treatment.

Conclusions

Results of this systematic review clearly show the predominance of the psychological function and clinical management themes among patients undergoing curative and non-curative treatments in early or advanced stages of cancer. Anyhow, symptoms & physical function, social function and life disruption maintain their importance within the classical HRQoL framework. The emergence of clinical management is consistent with the growing patient-centered care approach, supporting the need to integrate this content into the evaluation of patients undergoing cancer treatment, taking specially into account clinical management needs, as they are usually not included in existing HRQoL instruments, and they are often considered part of patient-reported experience measures rather than outcomes. The findings from this review have contributed to the initial development steps of the EUonQoL-kit. Further qualitative research from central and eastern European countries is needed. In addition, the high relevance of psychological worries, fears and coping strategies highlights the importance to address the psychological wellbeing of cancer patients in clinical management, helping health professionals and policymakers improve the support provided throughout the cancer process.

Acknowledgements

The authors would like to acknowledge the members of the EUonQoL Working Group: Massimo Costantini, Madeline Pe, Galina Velikova, Chiara Marzorati, Antonio Tanzilli, Morten Aagaard Petersen, Olatz Garin, Aline Machiavelli, Joachim Widder, Helidon Nina, Philip Debruyne, Ivaylo Petrov, Vesna Ramljak, Maria Krini, Tomas Kazda, Helle Pappot, Liina Pääbo, Vahur Valvere, Johanna Mattson, Ann Bredart, Carole Boulec, Mariaalice Borinelli-Franzoi, Ekaterina Kldiashvili, Christian Brandts, Nicole Erickson, Volker Arndt, Olga Balaoura, Horvath Orsolya, Claire Donohoe, Alessandro Rizzo, Andrea Pace, Sandra Lejniece, Audrius Dulskas, Vadim Pogonet, Lonneke van de Poll, Marianne Grønlie Guren, Iwona Ługowska, Maria Litwiniuk, Maria José Bento, Tudor Ciuleanu, Milana Mitrić, Ivica Ratosa, Michal Chovanec, Maria Vieito, Héctor Aguilar, Eva Ruiz, Karin Ahlberg, Eda Tanrikulu Simsek, Mahmut Gumus, Inke Minnée-van Braak, Caitriona Higgins, Laura Pinnavaia, Carina Dantas, Tapani Kalmi, Leslye Rojas-Concha. The authors would also like to thank Áurea Martin for her proofreading, manuscript editing and submission preparation process.

Author contributions

All authors contributed to the study conception and design. Material preparation was performed by Catalina Lizano-Barrantes and Clara Amat-Fernandez; data was gathered by Catalina Lizano-Barrantes, Clara Amat-Fernandez, Montse Ferrer, Olatz Garin, Óscar Périz-Colón, Pablo Notti Saint-Jean, Yolanda Pardo, Leslye Rojas-Concha, and Melissa Thong; and analysis were performed by Catalina Lizano-Barrantes, Clara Amat-Fernandez, Olatz Garin, and Montse Ferrer. The first draft of the manuscript was written by Catalina Lizano-Barrantes and Clara Amat-Fernandez, and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.

Funding

Financial support for this study was provided through grants by the European Union HORIZON-MISS-2021-CANCER-02 101096362-EUonQoL and DIUE of Generalitat de Catalunya (AGAUR 2021 SGR 00624). CAF have worked on this manuscript while funded by AGAUR-FI Joan Oró of Departament de Recerca i Universitats de la Generalitat de Catalunya and co-funded by Fons Europeu Social Plus, FI-2 00266. CAF, OG, YP and MF were supported partly by CIBER de Epidemiología y Salud Pública (CIBEREP), Instituto de Salud Carlos III. The funding agreements ensure the authors’ independence in designing the study, interpreting the data, and writing and publishing the report.

Declarations

Conflict of interest

The authors declare no competing interests in this study, except for author GV who declares honoraria from Pfizer, Novartis, Eisai and Lilly; Consultancy fees from AstraZeneca, Roche, Novartis, Pfizer, Seagen, Eisai and Sanofi, and an institutional grant from Pfizer.

Ethical approval, consent to participate, consent for publication

Ethical clearance and patient consent for this research is not required, as the systematic review only uses information from previously published research.

Data availability

The datasets generated and/or analysed during the current study are available from the corresponding author upon reasonable request.

Footnotes

Co-first authors: Catalina Lizano-Barrantes and Clara Amat-Fernandez.

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Contributor Information

Olatz Garin, Email: ogarin@researchmar.net.

Montse Ferrer, Email: mferrer@researchmar.net.

the EUonQoL Working Group:

Massimo Costantini , Madeline Pe , Galina Velikova , Chiara Marzorati , Antonio Tanzilli , Morten Aagaard Petersen , Olatz Garin , Aline Machiavelli , Joachim Widder , Helidon Nina , Philip Debruyne , Ivaylo Petrov , Vesna Ramljak , Maria Krini , Tomas Kazda , Helle Pappot , Liina Pääbo , Vahur Valvere , Johanna Mattson , Ann Bredart , Carole Boulec , Mariaalice Borinelli-Franzoi , Ekaterina Kldiashvili , Christian Brandts , Nicole Erickson , Volker Arndt , Olga Balaoura , Horvath Orsolya , Claire Donohoe , Alessandro Rizzo , Andrea Pace , Sandra Lejniece , Audrius Dulskas , Vadim Pogonet , Lonneke van de Poll , Marianne Grønlie Guren , Iwona Ługowska , Maria Litwiniuk , Maria José Bento , Tudor Ciuleanu , Milana Mitrić , Ivica Ratosa , Michal Chovanec , Maria Vieito , Héctor Aguilar , Eva Ruiz , Karin Ahlberg , Eda Tanrikulu Simsek , Mahmut Gumus , Inke Minnée-van Braak , Caitriona Higgins , Laura Pinnavaia , Carina Dantas , Tapani Kalmi , and Leslye Rojas-Concha

References

1. Bray, F., Laversanne, M., Sung, H., Ferlay, J., Siegel, R. L., Soerjomataram, I., & Jemal, A. (2024). Global cancer statistics 2022: GLOBOCAN estimates of incidence and mortality worldwide for 36 cancers in 185 countries. CA: A Cancer Journal for Clinicians, 74 (3), 229–263. 10.3322/caac.21834

2. Food and Drug Administration. (2009). Guidance for Industry - Patient-Reported Outcome Measures: Use in Medical Product Development to Support Labeling Claims (p. 43). U.S. Department of Health and Human Services, Food and Drug Administration. Retrieved from https://www.fda.gov/media/77832/download

3. McKenna, S. P. (2011). Measuring patient-reported outcomes: Moving beyond misplaced common sense to hard science. BMC Medicine, 9 (1), 86. 10.1186/1741-7015-9-86

4. Balitsky, A. K., Rayner, D., Britto, J., Lionel, A. C., Ginsberg, L., Cho, W., Sardar, H., Cantor, N., Mian, H., Levine, M. N., & Guyatt, G. H. (2024). Patient-reported outcome measures in cancer care: An updated systematic review and meta-analysis. JAMA Network Open, 7 (8), e2424793. 10.1001/jamanetworkopen.2024.24793

5. Fukushima, T., Suzuki, K., Tanaka, T., Okayama, T., Inoue, J., Morishita, S., & Nakano, J. (2024). Global quality of life and mortality risk in patients with cancer: A systematic review and meta-analysis. Quality of Life Research, 33 (10), 2631–2643. 10.1007/s11136-024-03691-3

6. Basch, E., Deal, A. M., Dueck, A. C., Scher, H. I., Kris, M. G., Hudis, C., & Schrag, D. (2017). Overall survival results of a trial assessing patient-reported outcomes for symptom monitoring during routine cancer treatment. JAMA, 318 (2), 197–198. 10.1001/jama.2017.7156

7. Basch, E., Schrag, D., Henson, S., Jansen, J., Ginos, B., Stover, A. M., Carr, P., Spears, P. A., Jonsson, M., Deal, A. M., Bennett, A. V., & Dueck, A. C. (2022). Effect of electronic symptom monitoring on patient-reported outcomes among patients with metastatic cancer: A randomized clinical trial. JAMA, 327 (24), 2413–2422. 10.1001/jama.2022.9265

8. Wagle, N. S., Nogueira, L., Devasia, T. P., Mariotto, A. B., Yabroff, K. R., Islami, F., Jemal, A., Alteri, R., Ganz, P. A., Siegel, R. L., & Siegel, R. L. (2025). Cancer treatment and survivorship statistics, 2025. CA: A Cancer Journal for Clinicians, 75 (4), 308–340. 10.3322/caac.70011

9. Zhao, J., Zhan, L., Pang, Y., Shen, S., Huang, J., Zhang, W., & Wei, S. (2025). Prevalence and risk factors for cancer-related fatigue in women with malignant gynecological tumors: A meta-analysis and systematic review. BMC Cancer, 25 (1), 827. 10.1186/s12885-025-14210-z

10. Staff, N. P., Grisold, A., Grisold, W., & Windebank, A. J. (2017). Chemotherapy-induced peripheral neuropathy: A current review. Annals of Neurology, 81 (6), 772–781. 10.1002/ana.24951

11. So, W. K. W., Law, B. M. H., Ng, M. S. N., He, X., Chan, D. N. S., Chan, C. W. H., & McCarthy, A. L. (2021). Symptom clusters experienced by breast cancer patients at various treatment stages: A systematic review. Cancer Medicine, 10 (8), 2531–2565. 10.1002/cam4.3794

12. Graupner, C., Kimman, M. L., Mul, S., Slok, A. H. M., Claessens, D., Kleijnen, J., Dirksen, C. D., & Breukink, S. O. (2021). Patient outcomes, patient experiences and process indicators associated with the routine use of patient-reported outcome measures (PROMs) in cancer care: A systematic review. Supportive Care in Cancer, 29 (2), 573–593. 10.1007/S00520-020-05695-4

13. Nipp, R. D., Horick, N. K., Qian, C. L., Knight, H. P., Kaslow-Zieve, E. R., Azoba, C. C., Landay, S. L., Kay, P. S., Ryan, D. P., Jackson, V. A., & Temel, J. S. (2022). Effect of a symptom monitoring intervention for patients hospitalized with advanced cancer. JAMA Oncology, 8 (4), 571–578. 10.1001/jamaoncol.2021.7643

14. Strasser, F., Blum, D., von Moos, R., Cathomas, R., Ribi, K., Aebi, S., Betticher, D., Hayoz, S., Klingbiel, D., Brauchli, P., Haefner, M., & Swiss Group for Clinical Cancer Research (SAKK). (2016). The effect of real-time electronic monitoring of patient-reported symptoms and clinical syndromes in outpatient workflow of medical oncologists: E-MOSAIC, a multicenter cluster-randomized phase III study (SAKK 95/06). Annals of Oncology, 27 (2), 324–332. 10.1093/annonc/mdv576

15. Basch, E., Deal, A. M., Kris, M. G., Scher, H. I., Hudis, C. A., Sabbatini, P., Rogak, L., Bennett, A. V., Dueck, A. C., Atkinson, T. M., Chou, J. F., & Schrag, D. (2016). Symptom monitoring with patient-reported outcomes during routine cancer treatment: A randomized controlled trial. Journal of Clinical Oncology, 34 (6), 557–565. 10.1200/JCO.2015.63.0830

16. Billingy, N. E., van den Hurk, C. J. G., Tromp, N. M. F., van de Poll-Franse, L., Onwuteaka-Philipsen, B. D., Hugtenburg, J. G., Bogaard, H. J., Belderbos, J., Aaronson, N. K., Walraven, I., Becker-Commissaris, A., & SYMPRO-Lung Consortium. (2024). Patient- vs physician-initiated response to symptom monitoring and health-related quality of life: The SYMPRO-Lung cluster randomized trial. JAMA Network Open, 7 (8), e2428975. 10.1001/jamanetworkopen.2024.28975

17. Lyu, J., Zhang, H., Wang, H., Liu, X., Jing, Y., Yin, L., & Wang, A. (2024). Facilitators and barriers to implementing patient-reported outcomes in clinical oncology practice: A systematic review based on the consolidated framework for implementation research. Implementation Science Communications, 5 (1), 120. 10.1186/s43058-024-00654-0

18. Pearce, N. J. M., Sanson‐Fisher, R., & Campbell, H. S. (2008). Measuring quality of life in cancer survivors: A methodological review of existing scales. Psycho-Oncology, 17 (7), 629–640. 10.1002/pon.1281

19. Catt, S., Starkings, R., Shilling, V., & Fallowfield, L. (2017). Patient-reported outcome measures of the impact of cancer on patients’ everyday lives: A systematic review. Journal of Cancer Survivorship, 11 (2), 211–232. 10.1007/s11764-016-0580-1

20. Anderson, M., Van Kessel, R., Wood, E., Stokes, A., Fistein, J., Porter, I., Mossialos, E., & Valderas, J. M. (2024). Understanding factors impacting patient-reported outcome measures integration in routine clinical practice: An umbrella review. Quality of Life Research . 10.1007/s11136-024-03728-7

21. American Association for Cancer Research. (n.d.). AACR Cancer Progress Report 2024 . Retrieved from https://cancerprogressreport.aacr.org/wp-content/uploads/sites/2/2024/09/AACR_CPR_2024.pdf

22. Chung, K. C., Muthutantri, A., Goldsmith, G. G., Watts, M. R., Brown, A. E., & Patrick, D. L. (2024). Symptom impact and health-related quality of life (HRQoL) assessment by cancer stage: A narrative literature review. BMC Cancer, 24 (1), 884. 10.1186/s12885-024-12612-z

23. Schlander, M., Van Harten, W., Retèl, V. P., Pham, P. D., Vancoppenolle, J. M., Ubels, J., López, O. S., Quirland, C., Maza, F., Aas, E., Crusius, B., & Eckford, R. D. (2024). The socioeconomic impact of cancer on patients and their relatives: Organisation of European Cancer Institutes task force consensus recommendations on conceptual framework, taxonomy, and research directions. The Lancet Oncology, 25 (4), e152–e163. 10.1016/S1470-2045(23)00636-8

24. Laidsaar-Powell, R., Konings, S., Rankin, N., Koczwara, B., Kemp, E., Mazariego, C., & Butow, P. (2019). A meta-review of qualitative research on adult cancer survivors: Current strengths and evidence gaps. Journal of Cancer Survivorship, 13 (6), 852–889. 10.1007/s11764-019-00803-8

25. Heidary, Z., Ghaemi, M., Hossein Rashidi, B., Kohandel Gargari, O., & Montazeri, A. (2023). Quality of life in breast cancer patients: A systematic review of the qualitative studies. Cancer Control, 30 , 10732748231168318. 10.1177/10732748231168318

26. Jablotschkin, M., Binkowski, L., Markovits Hoopii, R., & Weis, J. (2022). Benefits and challenges of cancer peer support groups: A systematic review of qualitative studies. European Journal of Cancer Care . 10.1111/ecc.13700

27. EUonQoL. (n.d.). EUonQoL . Retrieved November 16, 2024, from https://euonqol.eu/

28. Sweegers, M. G., de Jongh, E., Bedding, C., Nicklin, E., Doege, D., Alfieri, S., Gangeri, L., Scacciati, B., Caraceni, A., Brunelli, C., Bredart, A., & van de Poll-Franse, L. V. (2025). Development of a unified system for assessing health related quality of life across the cancer care continuum: The EUonQoL Delphi study to identify priorities for quality of life domains. Journal of Patient-Reported Outcomes, 9 (1), 70. 10.1186/s41687-025-00907-z

29. Engelaar, M., Bos, N., van Schelven, F., Lorenzo i Sunyer, N., Couespel, N., Apolone, G., Brunelli, C., Caraceni, A., Ferrer, M., Groenvold, M., Kaasa, S., & Rademakers, J. (2024). Collaborating with cancer patients and informal caregivers in a European study on quality of life: Protocol to embed patient and public involvement within the EUonQoL project. Research Involvement and Engagement, 10 (1), 59. 10.1186/s40900-024-00597-9

30. Apolone, G., Costantini, M., Caselli, L., Bos, N., Caraceni, A., Ciliberto, G., Couespel, N., Ferrer, M., Groenvold, M., Kaasa, S., Lombardo, C., & Brunelli, C. (2024). Validation of the European Oncology toolkit for the self-assessment of Quality of Life (EUonQoL-Kit) in cancer patients and survivors: Study protocol of a pan European survey. BMC Public Health, 24 (1), 3517. 10.1186/s12889-024-21008-4

31. Amat-Fernandez, C., Garin, O., Luer-Aguila, R., Pardo, Y., Briseño, R., Lizano-Barrantes, C., Rojas-Concha, L., SY Thong, M., Apolone, G., Brunelli, C., Caraceni, A., & Ferrer, M. (2025). Systematic review of the needs and health-related quality of life domains relevant to people surviving cancer in Europe. Quality of Life Research . 10.1007/s11136-024-03884-w

32. Lizano-Barrantes, C., Amat-Fernandez, C., Garin, O., Luer-Aguila, R., Pardo, Y., Rojas-Concha, L., Thong, M. S., Apolone, G., Brunelli, C., Caraceni, A., Couespel, N., & EUonQoL Working Group. (2025). Needs and health-related quality of life domains relevant to people in Europe with advanced cancer in palliative care: A systematic review of qualitative research. Quality of Life Research . 10.1007/s11136-025-04129-0

33. Page, M. J., McKenzie, J. E., Bossuyt, P. M., Boutron, I., Hoffmann, T. C., Mulrow, C. D., Shamseer, L., Tetzlaff, J. M., Akl, E. A., Brennan, S. E., Chou, R., & Moher, D. (2021). The PRISMA 2020 statement: An updated guideline for reporting systematic reviews. BMJ, 372 , n71. 10.1136/bmj.n71

34. Ferrari, A., Stark, D., Peccatori, F. A., Fern, L., Laurence, V., Gaspar, N., Bozovic-Spasojevic, I., Smith, O., De Munter, J., Derwich, K., Hjorth, L., & Saloustros, E. (2021). Adolescents and young adults (AYA) with cancer: A position paper from the AYA Working Group of the European Society for Medical Oncology (ESMO) and the European Society for Paediatric Oncology (SIOPE). ESMO Open, 6 (2), 100096. 10.1016/j.esmoop.2021.100096

35. Specialist Unit for Review Evidence (SURE). (2015). Questions to assist with the critical appraisal of qualitative studies. Retrieved from https://www.cardiff.ac.uk/specialist-unit-for-review-evidence/resources/critical-appraisal-checklists

36. Wilson, I. B., & Cleary, P. D. (1995). Linking clinical variables with health-related quality of life: A conceptual model of patient outcomes. JAMA, 273 (1), 59. 10.1001/jama.1995.03520250075037

37. Ferrans, C. E., Zerwic, J. J., Wilbur, J. E., & Larson, J. L. (2005). Conceptual model of health‐related quality of life. Journal of Nursing Scholarship, 37 (4), 336–342. 10.1111/j.1547-5069.2005.00058.x

38. Bakas, T., McLennon, S. M., Carpenter, J. S., Buelow, J. M., Otte, J. L., Hanna, K. M., Ellett, M. L., Hadler, K. A., & Welch, J. L. (2012). Systematic review of health-related quality of life models. Health and Quality of Life Outcomes, 10 (1), 134. 10.1186/1477-7525-10-134

39. Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3 (2), 77–101. 10.1191/1478088706qp063oa

40. Alander, M. E. J., Klaeson, K., Nyqvist, H., & Olausson, S. (2021). Lived experiences and caring needs in young adults diagnosed with cancer. Nursing Forum, 56 (4), 781–790. 10.1111/nuf.12595

41. Almeida, A. M., Lima, L., & Martins, T. (2024). Understanding quality of life’s challenges in sarcoma patients: A mixed-methods study. European Journal of Oncology Nursing, 70 , 102585. 10.1016/j.ejon.2024.102585

42. Balmer, C., Griffiths, F., & Dunn, J. (2015). A “new normal”: Exploring the disruption of a poor prognostic cancer diagnosis using interviews and participant-produced photographs. Health, 19 (5), 451–472. 10.1177/1363459314554319

43. Doveson, S., Holm, M., Axelsson, L., Fransson, P., & Wennman-Larsen, A. (2020). Facing life-prolonging treatment: The perspectives of men with advanced metastatic prostate cancer - An interview study. European Journal of Oncology Nursing, 49 , 101859. 10.1016/j.ejon.2020.101859

44. Eymech, O., Brunckhorst, O., Fox, L., Jawaid, A., Van Hemelrijck, M., Stewart, R., Dasgupta, P., & Ahmed, K. (2022). An exploration of wellbeing in men diagnosed with prostate cancer undergoing active surveillance: A qualitative study. Supportive Care Cancer, 30 (6), 5459–5468. 10.1007/s00520-022-06976-w

45. Giesinger, J. M., Aaronson, N. K., Arraras, J. I., Efficace, F., Groenvold, M., Kieffer, J. M., Loth, F. L., Petersen, M. A., Ramage, J., Tomaszewski, K. A., Young, T., & Holzner, B. (2018). A cross-cultural convergent parallel mixed methods study of what makes a cancer-related symptom or functional health problem clinically important. Psycho-Oncology, 27 (2), 548–555. 10.1002/pon.4548

46. Graffigna, G., Cecchini, I., Breccia, M., Capochiani, E., Della Seta, R., Galimberti, S., Melosi, A., Simonetti, F., Pizzuti, M., Capalbo, S. F., Falzetti, F., & Pacilli, M. (2017). Recovering from chronic myeloid leukemia: The patients’ perspective seen through the lens of narrative medicine. Quality of Life Research, 26 (10), 2739–2754. 10.1007/s11136-017-1611-8

47. Jakobsson, J., Idvall, E., & Kumlien, C. (2017). The lived experience of recovery during the first 6 months after colorectal cancer surgery. Journal of Clinical Nursing, 26 (23–24), 4498–4505. 10.1111/jocn.13780

48. Jepsen, L. Ø., Høybye, M. T., Hansen, D. G., Marcher, C. W., & Friis, L. S. (2016). Outpatient management of intensively treated acute leukemia patients–the patients’ perspective. Supportive Care in Cancer, 24 (5), 2111–2118. 10.1007/s00520-015-3012-2

49. Lee Mortensen, G., Madsen, I. B., Krogsgaard, R., & Ejlertsen, B. (2018). Quality of life and care needs in women with estrogen positive metastatic breast cancer: A qualitative study. Acta Oncologica, 57 (1), 146–151. 10.1080/0284186X.2017.1406141

50. Matheson, L., Nayoan, J., Rivas, C., Brett, J., Wright, P., Butcher, H., Jordan, P., Gavin, A., Glaser, A., Mason, M., Wagland, R., & Watson, E. (2021). Strategies for living well with hormone-responsive advanced prostate cancer—a qualitative exploration. Supportive Care in Cancer, 29 (3), 1317–1325. 10.1007/s00520-020-05594-8

51. Nielsen, S., Ringborg, C. H., Schandl, A., & Lagergren, P. (2021). A qualitative study exploring patient’s experiences of oesophageal cancer surgery, through their personal advice to future patients. European Journal of Oncology Nursing , 54 , 101983. 10.1016/j.ejon.2021.101983

52. Osborne, T. R., Ramsenthaler, C., de Wolf-Linr, S., Schey, S. A., Siegert, R. J., Edmonds, P. M., & Higginson, I. J. (2014). Understanding what matters most to people with multiple myeloma: A qualitative study of views on quality of life. BMC Cancer, 14 , 496. 10.1186/1471-2407-14-496

53. Petri, S., & Berthelsen, C. B. (2015). Lived experiences of everyday life during curative radiotherapy in patients with non-small-cell lung cancer: A phenomenological study. International Journal of Qualitative Studies on Health and Well-Being, 10 , 29397. 10.3402/qhw.v10.29397

54. Schölvinck, A. M., de Graaff, B. M. B., van den Beld, M. J., & Broerse, J. E. W. (2019). Research in haematological cancers: What do patients in the Netherlands prioritise? European Journal of Cancer Care, 28 (2), e12989. 10.1111/ecc.12989

55. Sonsby, L., Rahbæk Dueholm, J., Danbjørg, D. B., Abildgaard, N., & Kongsgaard Nielsen, L. (2023). Changes in health-related quality of life during multiple myeloma treatment: A qualitative interview study. Oncology Nursing Forum, 50 (5), 635–645. 10.1188/23.ONF.635-645

56. Stewart, R., Richards, H. L., Houghton, S., Sweeney, P., & Fortune, D. G. (2023). I had it. I don’t think I have it…but I do feel it will come back somewhere”: A qualitative investigation of the experience of people with non-muscle invasive bladder cancer. Qualitative Health Research, 33 (11), 969–982. 10.1177/10497323231170089

57. van Dongen, J., de Heus, E., Eickholt, L., Schrieks, M., Zantingh, I., Brouwer, O. R., Oonk, M. H., Grotenhuis, B. A., Ezendam, N. P., & Duijts, S. F. A. (2022). Challenges and controversies patients and (health care) professionals experience in managing vaginal, vulvar, penile or anal cancer: The SILENCE study. European Journal of Cancer Care, 31 (6), e13676. 10.1111/ecc.13676

58. van Overveld, L. F. J., Takes, R. P., Turan, A. S., Braspenning, J. C. C., Smeele, L. E., Merkx, M. A. W., de Baatenburg Jong, R. J., de Boer, J. P., Brouns, J. J., & van Weert, S. (2018). Needs and preferences of patients with head and neck cancer in integrated care. Clinical Otolaryngology, 43 (2), 553–561. 10.1111/coa.13021

59. Zanotto, A., Goodall, K., Ellison, M., & McVittie, C. (2023). “Make them wonder how you are still smiling”: The lived experience of coping with a brain tumour. Qualitative Health Research, 33 (7), 601–612. 10.1177/10497323231167345

60. Zwanenburg, L. C., Suijkerbuijk, K. P. M., van Dongen, S. I., Koldenhof, J. J., van Roozendaal, A. S., van der Lee, M. L., & Schellekens, M. P. J. (2024). Living in the twilight zone: A qualitative study on the experiences of patients with advanced cancer obtaining long-term response to immunotherapy or targeted therapy. Journal of Cancer Survivorship, 18 (3), 750–760. 10.1007/s11764-022-01306-9

61. Appleton, L., Poole, H., & Wall, C. (2018). Being in safe hands: Patients’ perceptions of how cancer services may support psychological well-being. Journal of Advanced Nursing, 74 (7), 1531–1543. 10.1111/jan.13553

62. Fraterman, I., Glaser, S. L. C., Wilgenhof, S., Medlock, S. K., Mallo, H. A., Cornet, R., de Van Poll-Franse, L. V., Boekhout, A. H., & Boekhout, A. H. (2022). Exploring supportive care and information needs through a proposed eHealth application among melanoma patients undergoing systemic therapy: A qualitative study. Supportive Care in Cancer, 30 (9), 7249–7260. 10.1007/s00520-022-07133-z

63. Hajdarevic, S., Fallbjörk, U., Fransson, P., & Åström, S. (2022). Need of support perceived by patients primarily curatively treated for breast, colorectal, or prostate cancer and close to discharge from hospital-a qualitative study. Journal of Clinical Nursing, 31 (9–10), 1216–1227. 10.1111/jocn.15977

64. He, J., Duenas, A., Collacott, H., Lam, A., Gries, K. S., Carson, R., Potthoff, D., Trevor, N., & Tervonen, T. (2021). Patient perceptions regarding multiple myeloma and its treatment: Qualitative evidence from interviews with patients in the United Kingdom, France, and Germany. Patient, 14 (5), 613–623. 10.1007/s40271-021-00501-7

65. Madsen, R., Uhrenfeldt, L., & Birkelund, R. (2019). Transition experiences during courses of incurable cancer from the perspective of patients. European Journal of Oncology Nursing, 38 , 13–20. 10.1016/j.ejon.2018.11.008

66. Netsey-Afedo, M. M. L., Ammentorp, J., Osther, P. J. S., & Birkelund, R. (2020). No time for reflection: Patient experiences with treatment-related decision-making in advanced prostate cancer. Scandinavian Journal of Caring Sciences, 34 (4), 880–888. 10.1111/scs.12794

67. Paterson, C., Kata, S. łG., Nandwani, G., Das Chaudhury, D., & Nabi, G. (2017). Unmet supportive care needs of men with locally advanced and metastatic prostate cancer on hormonal treatment: A mixed methods study. Cancer Nursing, 40 (6), 497–507. 10.1097/NCC.0000000000000482

68. Punnett, G., Fenemore, J., Blackhall, F., & Yorke, J. (2023). Support and information needs for patients with non-small cell lung cancer receiving concurrent chemo-radiotherapy treatment with curative intent: Findings from a qualitative study. European Journal of Oncology Nursing, 64 , 102325. 10.1016/j.ejon.2023.102325

69. Rossau, H. K., Kjerholt, M., Brochmann, N., Tang, L. H., & Dieperink, K. B. (2022). Daily living and rehabilitation needs in patients and caregivers affected by myeloproliferative neoplasms (MPN): A qualitative study. Journal of Clinical Nursing, 31 (7–8), 909–921. 10.1111/jocn.15944

70. Russell, A. C., Reid, H., Coleman, H. G., & Santin, O. (2024). Understanding the treatment experiences of adults diagnosed with early-onset colorectal cancer: A qualitative study. Psycho-Oncology, 33 (7), 6367. 10.1002/pon.6367

71. Solberg, M., Berg, G. V., & Andreassen, H. K. (2023). Lost in the loop - a qualitative study on patient experiences of care in standardized cancer patient pathways. BMC Health Services Research, 23 (1), 1371. 10.1186/s12913-023-10364-3

72. Sheridan, R., McCaughan, D., Hewison, A., Roman, E., Smith, A., Patmore, R., & Howell, D. (2023). Experiences and preferences for psychosocial support: A qualitative study exploring the views of patients with chronic haematological cancers. British Medical Journal Open, 13 (8), e070467. 10.1136/bmjopen-2022-070467

73. van de Wal, D., Fauske, L., Bruland, Ø. S., Jones, R. L., Kasper, B., Wilson, R., van der Graaf, W. T., & Husson, O. (2023). Psychological and social challenges of patients with locally advanced and metastatic gastrointestinal stromal tumours (GIST) on long-term treatment with tyrosine kinase inhibitors: A qualitative study with patients and medical oncologists. Supportive Care in Cancer, 31 (6), 352. 10.1007/s00520-023-07810-7

74. Beerda, D. C. E., Zegers, A. D., van Andel, E. S., Becker-Commissaris, A., van der Vorst, M. J. D. L., Tange, D., Duijts, S. F., & Brom, L. (2022). Experiences and perspectives of patients with advanced cancer regarding work resumption and work retention: A qualitative interview study. Supportive Care in Cancer, 30 (12), 9713–9721. 10.1007/s00520-022-07436-1

75. Jespersen, E., Minet, L. R., & Nissen, N. (2022). Symptoms of total pain experienced by older people with advanced gastrointestinal cancer receiving palliative chemotherapy. European Journal of Cancer Care, 31 (6), e13674. 10.1111/ecc.13674

76. Curran, L., Sharpe, L., & Butow, P. (2017). Anxiety in the context of cancer: A systematic review and development of an integrated model. Clinical Psychology Review, 56 , 40–54. 10.1016/j.cpr.2017.06.003

77. Morris, N., Moghaddam, N., Tickle, A., & Biswas, S. (2018). The relationship between coping style and psychological distress in people with head and neck cancer: A systematic review. Psycho-Oncology, 27 (3), 734–747. 10.1002/pon.4509

78. Alanazi, M. O., Given, C. W., Deka, P., Lehto, R., & Wyatt, G. (2023). A literature review of coping strategies and health-related quality of life among patients with heart failure. European Journal of Cardiovascular Nursing, 22 (3), 236–244. 10.1093/eurjcn/zvac042

79. Curran, L., Mahoney, A., & Hastings, B. (2025). A systematic review of trajectories of clinically relevant distress amongst adults with cancer: Course and predictors. Journal of Clinical Psychology in Medical Settings, 32 (1), 1–18. 10.1007/s10880-024-10011-x

80. Evans Webb, M., Murray, E., Younger, Z. W., Goodfellow, H., & Ross, J. (2021). The supportive care needs of cancer patients: A systematic review. Journal of Cancer Education, 36 (5), 899–908. 10.1007/s13187-020-01941-9

81. Mitchell, K. R., Brassil, K. J., Rodriguez, S. A., Tsai, E., Fujimoto, K., Krause, K. J., Shay, L. A., & Springer, A. E. (2020). Operationalizing patient‐centered cancer care: A systematic review and synthesis of the qualitative literature on cancer patients’ needs, values, and preferences. Psycho-Oncology, 29 (11), 1723–1733. 10.1002/pon.5500

82. Bull, C., Teede, H., Watson, D., & Callander, E. J. (2022). Selecting and implementing patient-reported outcome and experience measures to assess health system performance. JAMA Health Forum, 3 (4), e220326. 10.1001/jamahealthforum.2022.0326

83. Cella, D. F., Tulsky, D. S., Gray, G., Sarafian, B., Linn, E., Bonomi, A., Silberman, M., Yellen, S. B., Winicour, P., & Brannon, J. (1993). The Functional Assessment of Cancer Therapy scale: Development and validation of the general measure. Journal of Clinical Oncology, 11 (3), 570–579. 10.1200/jco.1993.11.3.570

84. Aaronson, N. K., Ahmedzai, S., Bergman, B., Bullinger, M., Cull, A., Duez, N. J., Filiberti, A., Flechtner, H., Fleishman, S. B., Haes, J. C., Kaasa, S., & Takeda, F. (1993). The European Organization for Research and Treatment of Cancer QLQ-C30: A Quality-of-Life Instrument for Use in International Clinical Trials in Oncology. JNCI Journal of the National Cancer Institute, 85 (5), 365–376. 10.1093/jnci/85.5.365

85. Leysen, L., Marticic Giljevic, K., Piccinin, C., Shkodra, M., Pe, M., Petersen, M., Apolone, G., Brunelli, C., Lombardo, C., Velikova, G., Gilbert, A., & EUonQOL Consortium. (2025). Evaluation of the psychometric properties of patient-reported outcome measures of health-related quality of life across the European cancer continuum: A systematic review protocol using COSMIN methodology. British Medical Journal Open, 15 (3), e088716. 10.1136/bmjopen-2024-088716

86. Van De Ven, A. H., & Delbecq, A. L. (1972). The nominal group as a research instrument for exploratory health studies. American Journal of Public Health, 62 (3), 337–342. 10.2105/AJPH.62.3.337

Associated Data

Data Availability Statement

The datasets generated and/or analysed during the current study are available from the corresponding author upon reasonable request.