Identifying the research question

The primary research objective of this scoping review is to identify all primary research on patient-derived QoC indicators for those living with MLTC. Initially we had aimed to report on the implementation and/or evaluation of patient-derived MLTC QoC indicators, but through preliminary searches and our knowledge in this subject, we anticipate a dearth in literature to be able to answer this question. We will seek to answer the following review questions:

1. What does quality of care mean for those affected by MLTC that could inform the development of patient and caregiver derived QoC indicators?
2. What is the content of any existing patient-derived MLTC QoC indicators?
3. What processes have been used to develop patient-derived MLTC QoC indicators?

Identifying the relevant studies

To achieve a balance between sensitivity and specificity within the search strategy, a three-step search strategy was adopted using the Population, Concept, Context (PCC) format to align study selection with research question. Searches were conducted in seven databases based on the recommendations from Bramer et al [18]; CINAHL (EBSCO), EMBASE (Ovid), MEDLINE (Ovid), PsycINFO (Ovid), Global Health (Ovid), HMIC (Health Management Information Consortium) (Ovid). Since our research questions aim to map research methodology used in the development of potential or established QoC indicators, we did not perform additional searches in the grey literature. To minimise risk of reporting bias and identify any additional ongoing trials relevant to our review, clinical trial registers (ClinicTrial.gov, WHO ICTRP and Clinical Trials Information System) have been searched without any relevant results identified. The reference lists of all included studies will be screened to identify additional publications of relevance and authors of eligible studies will be contacted for any additional information on poorly reported items.

To avoid an overly specific search, both “multimorbidity” and “comorbidity” terms have been considered, despite conceptual differences [5]. We will follow the National Institute for Health and Care Excellence (NICE) definition of multimorbidity, which considers the presence of two or more long-term conditions, including physical or mental health conditions, learning disabilities, symptom complexes, sensory impairments, or alcohol or substance misuse [19]. Likewise, the concept of “quality of care” lacks homogeneity, and its meaning varies between context, geographical area, institutions and individuals [20]. Although we will adopt the definition of a quality indicator as “a measurable item which allows assessment of care” [21], terms such as “indicators”, “measures” and “metrics” will be included in the search strategy, secondary to their interchangeable use in the literature, despite divergent meanings [10,22].

We anticipate identifying a dearth of evidence pertaining to patient-derived QoC indicators for those with MLTC, based on our preliminary scoping searches and broad knowledge of the field. This challenge is complicated by the absence of a universal definition for community or patient engagement and involvement in research. The terminology remains ambiguous, with varying concepts commonly employed, such as “consultation”, “participation”, “collaboration” and “empowerment”. Terms linked to patient-centred care were also sensitive to our search, highlighting an area that has gained substantial attention in evaluating or improving patient involvement within health care system [12,23]. The search strategy tested across the selected databases, devised with the research team, community partners and an experienced research librarian is available in the S1 File. As of March 2025, we have completed the databases searches, and we are in the record screening stages. Data extraction and synthesis are projected to be complete by July 2025. Scoping review results will be published in a peer-reviewed journal, and we will re-run the searches in September 2025, if necessary, as this marks 12 months since the searches were initially conducted.

Study selection

Searches will be restricted to articles published in English since January 2000, as patient-public active involvement in healthcare planning and quality of care design have emerged in the last two decades [24]. Looking at multimorbidity’s scientific interest, although this has started in the late 90s, it has gained increased focus in the past ten years [25].

We will include primary research studies regardless of their study design alone, provided there is a clear involvement of patients or caregivers to develop QoC indicators or to elicit their priorities with MTLC care. As our research question seeks to explore research methodologies used in this area, editorials, opinion articles, books, correspondences, commentaries and conference abstracts will be excluded. Table 1 provides further insight on the inclusion and exclusion criteria.

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Table 1. PCC framework inclusion and exclusion criteria.

https://doi.org/10.1371/journal.pone.0328016.t001

All citations will be imported into the bibliographic manager Covidence [26] for screening of titles, abstracts, full texts and data extraction. Duplicate citations will be removed automatically and manually whenever necessary. The first author (ST) will assess the eligibility of all studies using a two-step screening process; review of the title/ abstract, followed by a full-text examination of those that appear relevant. Community partners and last author will perform an independent blinded screening of the results for consistency. Both authors (ST, LD) will conduct blinded full-text review of all studies identified for inclusion. Any disagreements will be discussed until a consensus is reached, adjudicated by a third reviewer when necessary. For credibility and reproducibility of findings, the study selection process will be reported according to the Preferred Reporting Items for Systematic Reviews Extension for Scoping Reviews (PRISMA‐ScR) flowchart [27].

Data Collection and charting the results

All data extraction will be done by the first author, but to ensure consistency between researchers, blinded data extraction for the first five studies will also be done by the last author. An electronic data charting form using Covidence will be created to capture relevant information from each included study. This draft data charting form will be piloted and modified as needed following extraction of the first five reports included in the review. Modifications made to this form will be detailed in the final review manuscript publication. Table 2 includes a broad range of data we consider significant to answer our review questions.

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Table 2. Data charting form.

https://doi.org/10.1371/journal.pone.0328016.t002

Collating, summarising and reporting results

The findings will be presented through a structured, three-phase approach. First, the results of the database search will be illustrated using a flowchart. Second, a comprehensive summary of the data charting table will be provided, detailing the content, methodologies, and outcomes of QoC indicators. This will be further enriched by an analysis of the extent and nature of methods employed to engage patients and stakeholders. Finally, given that the majority of the data is expected to be qualitative, a thematic analysis will be conducted to identify recurrent themes on the main domains of quality identified by participants. Data will be systematically organised into categories and domains of quality through a process of familiarisation, code generation, and the grouping of similar-meaning concepts. These themes will be discussed collaboratively between researchers and community advisory partners, and subsequently interpreted through a narrative lens. To guide future discussions with stakeholders and policymakers during next stages of this project, and provide deeper contextual insights on the components of QoC indicators, findings will be mapped against the Donabedian framework on quality of care (structure, process, and outcomes) [29] and allocated, whenever possible, the most relevant Institute of Medicine (IOM) domain of healthcare quality (safe, effective, patient-centred, timely, efficient and equitable) [30].

Consultation and dissemination

The results of this review will be synthesised in partnership with patient and carer study advisory group members and will guide the next steps of a project aimed at developing a set of patient-derived QoC indicators. Our community partners, authors on this protocol, will continue to be actively involved by editing the manuscript, reviewing search terms, aiding identification of any relevant studies, data screening and synthesis of findings.