Exploring Transitions in Care Among Patients With Head and Neck Cancer: A Scoping Review

ABSTRACT

Background

Individuals living with and beyond head and neck cancer (HNC) experience many transitions in care (TiC), as their treatment and care involve a team of multidisciplinary healthcare providers across a variety of settings. TiC can be associated with medical error, patient dissatisfaction with care, and overuse of healthcare resources. The objective of this study is to understand TiC among individuals living with and beyond HNC by mapping and characterizing the existing evidence.

Methods

This scoping review identified evidence sources describing TiC among individuals living with and beyond HNC by searching five medical research databases using structured language and keywords related to the population (cancer) and concept (TiC). Titles and abstracts, and full texts were screened in duplicate for eligibility. Eligible studies were those that described or evaluated TiC among individuals with HNC, of any study design published in any language without restriction based on the date of publication. Quantitative data were summarized using descriptive statistics, and qualitative data were synthesized using thematic analysis.

Results

The search identified 26,431 unique evidence sources, of which 3375 were screened in full‐text, and 57 were included. Most studies were conducted in the United States between 2001 and 2024 and were retrospective cohort studies. Included evidence sources most frequently focused on the delays in the transition from diagnosis to treatment, followed by the TiC from surgery to radiation. The majority of evidence sources reported system‐level outcomes followed by patient‐level outcomes. Eight evidence sources described interventions to improve TiC.

Conclusion

The study identified a gap in our evidence regarding transitions during active treatment and in evaluating interventions to improve TiC among individuals living with and beyond HNC. Future research should focus on bridging these gaps to improve TiC and consequently outcomes for individuals living with and beyond HNC.

1. Introduction

Head and neck cancer (HNC) is a group of malignant tumors that develop above the clavicle, below the skull base, and includes the anterior neck [1]. These tumors encompass the paranasal sinuses, nasal cavity, oral cavity, pharynx, and larynx [2]. Globally, there are 890 000 new cases of HNC and 450 000 deaths annually [3]. Men are 2.5 times more likely than women to receive an HNC diagnosis [4, 5]. Several major risk factors contribute to the development of HNC, including alcohol and tobacco use, malnutrition, lower socioeconomic status, age, male sex, exposure to carcinogens, and Human Papilloma Virus (HPV) status [6, 7, 8]. Treatment typically involves surgery, radiation, chemotherapy, or a combination of these modalities leading to many complex interactions between patients and healthcare providers across several care settings [2, 9]. Additionally, HNC and its treatment often impair essential functions such as swallowing, breathing, and speech, while also causing significant psychosocial challenges [10]. Taken together, these consequences of cancer and its treatment require complex and coordinated care designed to minimize chronic functional impairments among individuals living with and beyond HNC. The need for coordinated care spans the cancer continuum (from cancer detection, throughout treatment, to survivorship or end‐of‐life care) [11]. As a result, these individuals are among the highest users of healthcare resources [12].

Transitions in Care (TiC) are defined as a set of actions designed to ensure the coordination and continuity of healthcare as patients transfer between different healthcare providers, locations, or levels of care [13, 14]. The TiC among individuals living with and beyond HNC can include, but is not limited to, the transitions from hospital to home, surgeon to oncologist, day treatment to home, and from specialists to primary care providers (i.e., family physicians) [14]. Ideally, these transitions are guided by a comprehensive care plan which is supported by healthcare professionals who are well‐trained and know the patient's goals, preferences, and clinical condition [14]. TiC should also encompass logistical planning, patient and family education, and coordination among all healthcare providers involved in the transition [11]. However, TiC are a vulnerable period in cancer care, where care can become fragmented and uncoordinated [15, 16, 17]. Poor TiC often lead to negative outcomes such as treatment delays, improper or conflicting care, medication errors, confusion, and distress for both patients and caregivers. Additionally, poor TiC can result in higher costs due to rehospitalization or complications [14, 16, 18, 19, 20, 21, 22].

The relative frequency of, and poor outcomes associated with, uncoordinated care delivery has resulted in a call to improve TiC for individuals living with and beyond HNC [23]. The Institute of Medicine report emphasizes the importance of addressing TiC, given the unique challenges and vulnerabilities individuals with cancer experience as they move from diagnosis to treatment and from treatment to survivorship [23]. The first step to improving TiC among individuals living with and beyond cancer is understanding the nature of TiC in order to design effective interventions. Improvements in care transitions will improve coordination and quality of care that addresses the diverse physical, psychological, and social needs of individuals with HNC in order to improve outcomes for patients [24].

While studies have investigated TiC in other cancers [13, 18, 19, 20, 21, 25, 26, 27], there are unique considerations among individuals with HNC. Synthesizing the evidence on TiC among individuals living with and beyond HNC is an essential first step to understand the unique elements of HNC delivery. The aim of this scoping review is to systematically map and characterize the evidence exploring TiC for patients with HNC. Specifically, the purpose was threefold: (1) map existing literature to examine the different types of transitions experienced and outcomes related to those transitions; (2) summarize key findings and themes; and (3) identify gaps in the existing literature to inform future studies and to improve the quality of care for individuals with HNC.

2. Methods

2.1. Study Design

Given the objective of this study is to describe, characterize, and map the literature, a scoping review methodology was chosen. The strength of a scoping review methodology for this study is that it provides a rigorous and transparent approach to identifying, mapping, and characterizing the literature to identify potential gaps in the literature around TiC among individuals living with and beyond cancer. The protocol for this scoping review has been previously published [11]. This review followed the Joanna Briggs Institute methodology and was reported using the Preferred Reporting Items for Systematic Reviews—Scoping Review Extension (PRISMA‐ScR) [28, 29].

Ethical approval was not required because all data has been published.

2.2. Search Strategy

A research librarian (DLL) with expertise in evidence synthesis developed the search strategy for a larger project exploring TiC among patients with all types of cancer [30]. The database searches were conducted using structured language, keywords, and synonyms for the population (patients with cancer) and the concept (TiC). An existing cancer filter from PubMed was modified for each database, and the TiC terms from a previous scoping review were used to develop the TiC terms [31]. The search strategy was run in MEDLINE, EMBASE, APA PsycINFO, CINAHL, and the Cochrane Database of Systematic Reviews (Supporting Information: File S1). The search included evidence sources published from database inception until June 14, 2023.

2.3. Eligibility Criteria

For the larger study, evidence sources were included if they described any TiC in adult patients diagnosed with cancer at any point in the cancer continuum. These transitions could include, but were not limited to, the transfer between healthcare providers, between healthcare institutions, or within healthcare institutions. Healthcare providers broadly included healthcare professionals from different disciplines and professions such as physicians, nurses, and allied healthcare professionals working in diverse healthcare environments such as hospitals, clinics, or communities. Evidence sources were also included if they described or evaluated interventions to improve TiC among patients with cancer. For the present study, the evidence sources included in the larger study were evaluated for eligibility based on the following criteria:

2.3.1. Population

Adults (≥ 18 years) with a diagnosis of HNC (excluding thyroid cancer) at any point in the cancer continuum. Evidence sources with populations that only included pediatric patients were excluded; however, studies that included pediatric and adult patients and stratified the findings based on age (data for adults and data for children) were included. Evidence sources were also excluded if they examined the TiC between pediatric and adult care (which differs from TiC among adult patients due to the nature of the TiC, familial involvement, resources, and autonomy).

2.3.2. Outcome(s)

Evidence sources that described any outcomes relating to TiC from patient and/or healthcare system perspectives were included. Outcomes reported may include processes of care or clinical outcomes and may describe any aspect of the quality of care provided (safety, effectiveness, efficiency, equality, timeliness, and patient‐centeredness).

2.3.3. Design

All study designs were included. However, for reviews (systematic, scoping, narrative, literature), the primary evidence sources were prioritized for inclusion, and the reviews were excluded if they presented duplicate data from the primary evidence sources. Conference proceedings were included if a peer‐reviewed, published manuscript did not exist.

There were no restrictions based on year or language of publication.

2.4. Selection of Evidence Sources

Selection of evidence sources occurred in two phases: (1) title and abstract screening followed by (2) full‐text screening. Both phases were performed in duplicate by two independent reviewers using Covidence for data management [32]. Before beginning screening for both phases, reliability between reviewers (JK, KS, SK, and AT) was established by testing eligibility screening on a sample of evidence sources by both reviewers (n = 20 for title abstract screening and n = 20 for full‐text screening). Testing continued until 80% agreement was achieved. Disagreements were not resolved during title and abstract screening; evidence sources were included for full‐text screening if deemed eligible by at least one reviewer. Disagreements among reviewers at full‐text screening were resolved through consensus or by a third reviewer if needed.

2.5. Data Charting

A standardized data charting form was used by one reviewer to chart the data independently (JK, SK, SI, AT, and AH) and reviewed by a second reviewer independently (JK and SK). The reviewers pilot tested the data abstraction form using a sample of evidence sources (n = 5) and modified the form based on the results from pilot testing until reviewers were satisfied that the data charting form captured all relevant data. Data items abstracted from the evidence sources include bibliometric information, information about the study design and methods, population and setting data, information about the TiC, any description of interventions to improve TiC including outcomes of implementing the intervention, and care outcomes. If there were any disagreements in the data abstracted, they were resolved through consensus or, if needed, a third reviewer. The final data charting form is provided (Supporting Information: File S2).

2.6. Data Analysis and Presentation of Results

All quantitative data were summarized using descriptive statistics: frequencies (proportions, percentages; %), means (with standard deviations; SD), medians (with interquartile ranges; IQR), and ranges. Qualitative data were synthesized using thematic analysis.

The type of cancer was categorized based on the tumor location. If more than one type of HNC cancer was included, all included tumor sites were abstracted, and if no specific tumor type was noted, they were categorized as not specified. TiC were categorized using “from” and “to,” and if an evidence source examined multiple TiC, TiC was categorized as “multiple.” Outcomes were categorized as patient related, or patient and system related, or both if there were multiple outcomes reported that included patient and system related. The objective of the included evidence sources was categorized into six different categories (descriptive, participants' perspectives on TiC, examination of risk factors related to TiC, care profiles or participant characteristics, delays in care, and interventions to improve TiC).

3. Results

3.1. Search Results

The search resulted in 26 431 evidence sources after removing duplicates, and 3375 full‐texts were assessed for eligibility, resulting in 801 included evidence sources for all types of cancer. Of the 2574 evidence sources excluded, the main reason they were excluded was that they did not examine a TiC, they only examined TiC during the COVID‐19 pandemic, or did not include patients with cancer (Supporting Information: File S3). Of the 801 eligible evidence sources, 57 included patients with HNC and were included in the analysis (Table 1).

TABLE 1.

Summary of the characteristics of included studies. [Color table can be viewed at wileyonlinelibrary.com]

Author	Year	Country	Publication type	Type of study	Study design	Objectives	Tumor site	TiC	# of Patient TiC	Outcome
Balogh	2021	Canada	Journal Article	Quantitative	Retrospective Cohort		Oropharynx Oral Cavity Not Specified	Diagnosis to Treatment	1462	Patient
Beatty	2023	USA	Journal Article	Multi‐method	Qualitative Retrospective Cohort		Head and Neck (Not Specified)	Multiple: Surgery to Home Home to Hospital	11	Patient
Brinkerhoff	2012	USA	Journal Article	Quantitative	Retrospective Cohort		Pharynx Larynx Oral Cavity	Diagnosis to Treatment	135	Patient & System
Brouha	2007	Netherlands	Journal Article	Quantitative	Retrospective Cohort		Oral Cavity Oropharynx Hypopharynx Larynx	Multiple: PCP to Specialist Specialist to Diagnosis	306	Patient & System
Cook	2022	Australia	Journal Article	Quantitative	Retrospective Cohort		Salivary Gland Oral Cavity Larynx Skin Pharynx Thyroid Sinonasal Not Specified	Multiple: PCP to Specialist Specialist to Diagnosis Diagnosis to Treatment Surgery to RT	72	Patient & System
Costa	2023	Brazil	Journal Article	Quantitative	Prospective Cohort		Oral Cavity Oropharynx	Multiple: PCP to Diagnosis, Diagnosis to Treatment	100	Patient & System
Dang	2023	USA	Journal Article	Quantitative	Retrospective Cohort		Oral Cavity Oropharynx Larynx HypopharynxSinonasal Skin Salivary Gland	Multiple: Surgery to Home Surgery to SNF Home to RT SNF to RT SNF to Hospital Home to Hospital	230	Patient & System
Esmaelbeigi	2014	Iran	Journal Article	Quantitative	Retrospective Cohort		Oral Cavity Oropharynx	Multiple: PCP to Diagnosis Diagnosis to Treatment	205	Patient & System
Funk	2014	USA	Abstract	Quantitative	Cross‐Sectional		Head and Neck (Not Specified)	Treatment to Survivorship Clinic	97	Patient
Gilmore	2022	USA	Abstract	Quantitative	Cross‐Sectional		Pharynx Oral Cavity Larynx	Treatment to Survivorship Clinic	377	Patient
Goel	2019	USA	Journal article	Quantitative	Cross‐Sectional		Oral Cavity Oropharynx	Multiple: Diagnosis to Surgery Surgery to RT RT Start to End of RT	3550	Patient & System
Goel	2020	USA	Journal Article	Quantitative	Retrospective Cohort		Sinonasal	Multiple: Diagnosis to Surgery Surgery to RT RT Start to End of RT	2267	Patient & System
Graboyes	2017	USA	Journal Article	Quantitative	Retrospective Cohort		Oral Cavity Oropharynx Hypopharynx Larynx	Surgery to RT	47 273	Patient & System
Graboyes	2020	USA	Journal Article	Qualitative	Qualitative		Oral Cavity Oropharynx Hypopharynx Larynx Sinonasal	Surgery to RT	27	Patient & System
Graboyes	2021	USA	Journal Article	Mixed‐Methods	Qualitative, Quasi Experimental: Pre‐Post		Oral Cavity Oropharynx (HPVrelated) Paranasal Sinus	Surgery to RT	15	Patient & System
Harris	2018	USA	Journal Article	Quantitative	Retrospective Cohort		Oropharynx Oral Cavity Larynx Hypopharynx	Surgery to RT	25 216	Patient & System
Indoe	2021	UK	Journal Article	Quantitative	Pilot RCT		Head and Neck (Not Specified)	Hospital to Home	14	Patient
Itamura	2020	USA	Journal Article	Quantitative	Retrospective Cohort		Oral Cavity Oropharynx Hypopharynx Larynx	Multiple: Diagnosis to Surgery Surgery to RT Start RT Start to RT End	104	Patient & System
Janz	2018	USA	Journal Article	Quantitative	Retrospective Cohort		Oral Cavity Oropharynx Hypopharynx Larynx	Surgery to RT	197	Patient & System
Keinanen	2023	Finland	Journal Article	Quantitative	Retrospective Cohort		Oral Cavity	Referral to Diagnosis	528	Patient & System
Koinberg	2018	UK	Journal Article	Qualitative	Qualitative		Oropharynx Nasopharynx Tumor Coli	Multiple: Diagnosis to Treatment Treatment to Survivorship	12	Patient
Kouka	2022	Germany	Abstract	Quantitative	Retrospective Cohort		Head and Neck (Not Specified)	Diagnosis to Treatment	297	Patient & System
Kowalski	2001	Brazil	Journal Article	Quantitative	Case Control		Oral Cavity Oropharynx Hypopharynx Larynx	Diagnosis to Treatment	207	Patient & System
Li	2023	China	Journal Article	Quantitative	Retrospective Cohort		Esophagus	Multiple: Surgery to Home Home to Hospital	449	Patient & System
Liao	2022	China	Journal Article	Quantitative	Pilot RCT		Nasopharynx	Treatment to Survivorship Care	114	Patient
Lorenz	2022	USA	Journal Article	Quantitative	Retrospective Cohort		Oropharynx Oral Cavity Hypopharynx Larynx	Surgery to RT	40 164	Patient & System
Lyhne	2013	Denmark	Journal Article	Quantitative	Retrospective Cohort		Oral Cavity Pharynx Larynx	Multiple: PCP to Diagnosis Diagnosis to Treatment	642	Patient & System
Marwah	2022	Australia	Journal Article	Quantitative	Retrospective Cohort		Nasal Cavity Oral Cavity Oropharynx Hypopharynx Larynx	Surgery to RT	94	Patient & System
Mayland	2021	UK	Journal Article	Qualitative	Qualitative		Head and Neck (Not Specified)	Treatment to Palliative Care	9	Patient & System
Metcalfe	2022	UK	Journal Article	Quantitative	Cross‐Sectional		Head and Neck (Not Specified)	Referral to Diagnosis	414	Patient & System
Metzger	2021	Germany	Journal Article	Quantitative	Retrospective Cohort		Oral Cavity	Diagnosis to Treatment	484	Patient & System
Murphy	2015	USA	Journal Article	Quantitative	Retrospective Cohort		Oral Cavity Oropharynx Larynx Hypopharynx	Diagnosis to Treatment	274 630	Patient & System
Nieminen	2020	Finland	Journal Article	Quantitative	Retrospective Cohort		Oropharynx	Multiple: PCP to Specialist Specialist to Diagnosis Diagnosis to Treatment	83	Patient & System
Nocon	2014	USA	Abstract	Quantitative	Retrospective Cohort		Oral Cavity	Diagnosis to Treatment	14 270	Patient & System
Patel	2012	USA	Journal Article	Quantitative	Retrospective Cohort		Oral Cavity Paranasal Sinus Pharynx Larynx Not Specified	Diagnosis to Treatment	110	Patient & System
Peacock	2008	USA	Journal Article	Quantitative	Retrospective Cohort		Oral Cavity	Multiple: PCP to Specialist Specialist to Diagnosis Diagnosis to Treatment	50	Patient & System
Qatanani	2022	USA	Journal Article	Quantitative	Retrospective Cohort		Sinonasal	Multiple: Diagnosis to Surgery Surgery to Start RT Start RT to End RT	173	Patient & System
Rosengren	2021	Sweden	Journal Article	Qualitative	Qualitative		Oropharynx Nasopharynx Tumor Coli	Treatment to Survivorship Care	12	Patient
Rosenthal	2002	USA	Journal Article	Quantitative	Retrospective Cohort		Oropharynx Oral Cavity Larynx Hypopharynx Paranasal Sinus Nasal Cavity Not Specified	Multiple: Surgery to Start RT RT Start to RT End Surgery to RT End	208	Patient & System
Sargeran	2013	Iran	Abstract	Quantitative	Retrospective Cohort		Oral Cavity	Diagnosis to Treatment	100	Patient
Schoonbeek	2021	Netherlands	Journal Article	Quantitative	Retrospective Cohort		Oral Cavity Oropharynx Hypopharynx Larynx	Diagnosis to Treatment	592	Patient
Schoonbeek	2021	Netherlands	Journal Article	Quantitative	Prospective Cohort		Oral Cavity Oropharynx Hypopharynx Larynx	Diagnosis to Treatment	192	Patient & System
Schoonbeek	2022	Netherlands	Journal Article	Quantitative	Retrospective Cohort		Oral Cavity Oropharynx Hypopharynx Larynx	Diagnosis to Treatment	525	Patient & System
Seaman	2022	USA	Journal Article	Quantitative	Retrospective Cohort		Nasal Cavity Oral Cavity Pharynx Larynx Salivary Gland	Treatment to Survivorship Care	426	Patient
Shaikh	2022	USA	Journal Article	Quantitative	Retrospective Cohort		Larynx	Diagnosis to Treatment	51 747	Patient & System
Sharma	2016	USA	Journal Article	Quantitative	Retrospective Cohort		Oropharynx	Diagnosis to Treatment	6606	Patient & System
Sweeny	2023	USA	Journal Article	Quantitative	Retrospective Cohort		Oral Cavity Midface Larynx Pharynx Scalp Skin LTB Skull Base Tracheoesophageal Neck	Multiple: Hospital to Home Hospital to Rehabilitation Facility Hospital to SNF	1972	Patient & System
Teppo	2008	Finland	Journal Article	Quantitative	Retrospective Cohort		Larynx Oral Cavity Pharynx	Multiple: PCP to Diagnosis Diagnosis to Treatment	221	Patient & System
Tsai	2017	Taiwan	Journal Article	Quantitative	Retrospective Cohort		Oral Cavity	Diagnosis to Treatment	21 263	Patient
Uitdehaag	2012	Netherlands	Journal Article	Quantitative	Quasi Experimental: Program Evaluation		Head and Neck (Not Specified) Esophagus	Multiple: Diagnosis to Palliative Care Treatment to Palliative Care	17	Patient
Ullgren	2017	Sweden	Journal Article	Quantitative	Cross‐Sectional		Head and Neck (Not Specified)	Treatment to Palliative Care	203	Patient
Urban	2022	Canada	Journal Article	Quantitative	Retrospective Cohort		Oropharynx	Diagnosis to Treatment	763	Patient & System
Van Overveld	2018	Netherlands	Journal Article	Qualitative	Qualitative		Larynx Oral Cavity	Multiple: Referral to Diagnosis Diagnosis to Treatment Treatment to Survivorship	12	Patient
Yin	2020	Taiwan	Journal Article	Quantitative	Retrospective Cohort		Oral Cavity Oropharynx Hypopharynx Larynx	Multiple: Surgery to Home Home to Hospital	487	Patient & System
Yu	2008	Canada	Journal Article	Quantitative	Retrospective Cohort		Oral Cavity Pharynx	Multiple: PCP to Diagnosis Diagnosis to Treatment	102	Patient & System
Zhao	2020	China	Journal Article	Quantitative	Cross‐Sectional		Larynx	Hospital to Home	212	Patient
Zullig	2018	UK	Journal Article	Qualitative	Qualitative		Head and Neck (Not Specified)	Treatment to Survivorship Care	4	Patient & System

Note: Research objective corresponding to color coding. Description, Review or Analysis of Patient, Family, Carer, and Healthcare Provider Perspectives on TiC: Purple . Examination of risk factors, covariates, protocols or frequency of TiC: Orange . Examination or Description of Care Profiles, or Patient Characteristics: Pink . Delays in diagnosis or treatment (including frequency, risk factors, length, outcomes): Yellow. Evaluation, Review or Implementation of an Intervention or Program: Blue . Examination of adverse events or patient outcomes related to TiC: Turquoise .

Abbreviations: NOS = not otherwise stated; PCP = primary care provider; RCT = randomized controlled trial; RT = radiation therapy; SFN = skilled nursing facility; TiC = transition in care; UK = United Kingdom; USA = United States of America.

3.2. Study Characteristics

The characteristics of each study are presented in Table 1. The studies were primarily conducted in the USA (n = 24, 42%) [33, 34, 35, 36, 37, 38, 39, 40, 41, 42, 43, 44, 45, 46, 47, 48, 49, 50, 51, 52, 53, 54, 55, 56] (Figure 1a). All included evidence sources were published in English (n = 57, 100%), between 2001 and 2024 with the majority being published in 2020 or after (n = 32, 56%; Figure 1b) [33, 35, 37, 39, 41, 42, 44, 46, 51, 53, 54, 56, 57, 58, 59, 60, 61, 62, 63, 64, 65, 66, 67, 68, 69, 70, 71, 72, 73, 74, 75]. Evidence sources were predominantly journal articles (n = 52, 91%) with the remainderw being conference abstracts (n = 5, 9%) [36, 37, 48, 76, 77]. The majority of evidence sources were quantitative studies (n = 49, 86%) [34, 35, 37, 38, 39, 40, 43, 44, 45, 46, 47, 48, 49, 50, 51, 52, 53, 54, 55, 56, 57, 58, 59, 60, 61, 62, 63, 64, 66, 67, 68, 70, 71, 72, 73, 74, 75, 76, 77, 78, 79, 80, 81, 82, 83, 84, 85, 86], which included a diverse range of study designs but were most predominantly retrospective cohort studies (n = 37, 65%) [34, 35, 39, 40, 43, 44, 45, 46, 47, 48, 49, 50, 51, 52, 53, 54, 55, 56, 57, 58, 61, 62, 64, 67, 68, 70, 71, 73, 74, 76, 77, 78, 79, 81, 82, 83, 86] (Figure 1c). Most evidence sources investigated delays in TiC and the effect of delays on patients (n = 39, 68%; represented by yellow in Table 1) [34, 35, 38, 39, 41, 42, 43, 44, 45, 46, 47, 48, 49, 50, 51, 52, 54, 55, 57, 58, 59, 61, 62, 64, 67, 68, 70, 71, 72, 73, 76, 77, 78, 79, 80, 81, 82, 83, 86]. Few studies primarily examined adverse events related to TiC (n = 4, 7%; represented by turquoise in Table 1) [33, 63, 74, 85].

FIGURE 1.

(a) Distribution of demographic location of sources included, (b) Year of publication for included evidence sources, and (c) study design for included evidence sources. [Color figure can be viewed at wileyonlinelibrary.com]

3.3. Participant Characteristics

Collectively 500 052 participants were included in the 57 evidence sources, averaging 8773 participants per study (Table 2). Male patients constituted more than half of the total number of HNC participants (71%) and mean age range was 52–62 years among the 43 studies that reported mean ages and 55 studies which reported sex [33, 34, 36, 37, 38, 39, 40, 41, 42, 43, 44, 45, 46, 47, 49, 51, 52, 53, 54, 55, 56, 57, 58, 59, 60, 61, 62, 63, 64, 65, 66, 67, 68, 70, 71, 73, 74, 75, 76, 77, 78, 79, 80, 81, 82, 83, 84, 85, 86, 87, 88, 89, 90, 91, 92]. More than half of the evidence sources included patients with more than one HNC site (n = 34, 60%) [34, 35, 37, 38, 40, 41, 42, 43, 44, 45, 46, 47, 49, 52, 53, 56, 57, 58, 59, 64, 69, 70, 71, 72, 74, 78, 79, 80, 81, 82, 84, 86, 87, 88]; the most commonly included tumor site was oral cavity (n = 37, 65%) [34, 35, 37, 38, 40, 41, 42, 43, 44, 45, 46, 47, 48, 49, 50, 52, 53, 56, 57, 58, 59, 61, 64, 67, 70, 71, 72, 74, 77, 78, 79, 80, 81, 82, 83, 86, 88] followed by the larynx (n = 27, 47%) [34, 35, 37, 40, 41, 43, 44, 45, 46, 47, 49, 52, 53, 54, 56, 58, 64, 70, 71, 72, 74, 75, 78, 80, 81, 82, 88] and oropharynx (n = 26, 46%; Table 2) [35, 38, 40, 41, 42, 43, 44, 45, 46, 47, 52, 55, 57, 59, 64, 68, 69, 70, 71, 72, 73, 74, 78, 79, 80, 87].

TABLE 2.

Summary of the demographic characteristics of participants in the included evidence sources.

Variable	HNC (n = 57)	%
Total number of participants	500,052
Sex
Female	114,193	24
Male	370,725	76
Mean number of patients (range)	8773 (4–274,630)
Patient age (mean/median)
≤ 40 years	0	0
41–51 years	0	0
52–62 years	22	39
63–73 years	16	28
> 73 years	0	0
NR	19	33
Age range	18–102

3.4. TiC Characteristics

The included evidence sources investigated a wide range of TiC across the cancer continuum, with many evidence sources investigating multiple TiC (n = 22, 39%) [33, 35, 38, 39, 44, 50, 51, 52, 56, 58, 59, 62, 68, 74, 78, 79, 81, 82, 84, 86, 87, 88], followed by the TiC from diagnosis to treatment (n = 16, 28%) [34, 47, 48, 49, 54, 55, 57, 70, 71, 72, 73, 76, 77, 80, 83], and surgery to radiation therapy (n = 7, 12%) [40, 41, 42, 43, 45, 46, 64] (Figure 2). Evidence sources explored TiC classified as during the pre‐treatment phase (n = 18, 32%) [34, 47, 48, 49, 54, 55, 57, 61, 66, 67, 70, 71, 72, 73, 76, 77, 83], treatment phase (n = 7, 12%) [40, 41, 42, 43, 45, 46, 64] and post‐treatment phase (n = 10, 18%; Figure 2) [36, 37, 53, 60, 63, 65, 69, 75, 85, 89].

FIGURE 2.

The types of TiC studied in the included evidence sources, organized by phase within the cancer journey. [Color figure can be viewed at wileyonlinelibrary.com]

3.5. Outcome Characteristics

The outcomes reported in the included evidence sources were varied (Figure 3). The majority of evidence sources focused on both patient and system‐related outcomes (n = 42, 74%) [34, 35, 38, 39, 40, 41, 42, 43, 44, 45, 46, 47, 48, 49, 50, 51, 52, 54, 55, 56, 58, 59, 61, 62, 64, 65, 66, 67, 68, 71, 72, 73, 74, 76, 78, 79, 80, 81, 82, 83, 86, 89]. Patient and system‐related outcomes were primarily related to delays in diagnosis, treatment, and follow‐up (n = 33, 58%) [34, 35, 38, 39, 43, 44, 45, 46, 47, 48, 49, 50, 51, 52, 54, 55, 58, 59, 61, 64, 67, 68, 71, 72, 73, 76, 78, 79, 80, 81, 82, 83, 86]. The evidence sources that only examined patient‐related outcomes (n = 15, 26%) [33, 36, 37, 53, 57, 60, 63, 69, 70, 75, 77, 84, 85, 87, 88] focused on patient experiences with their care and TiC (including delays, discharge, and survivorship) (n = 11, 19%) [33, 36, 37, 53, 57, 69, 70, 75, 77, 85, 87].

FIGURE 3.

The outcomes reported in the included evidence sources. [Color figure can be viewed at wileyonlinelibrary.com]

Twenty‐nine evidence sources provided data on predictors associated with delays in TiC (51%) [35, 39, 40, 41, 44, 46, 47, 48, 49, 50, 51, 54, 55, 57, 58, 59, 61, 62, 64, 68, 70, 71, 72, 77, 78, 79, 82, 86]. The number of predictor variables ranged in the evidence sources from reporting on one predictor to one source reporting on 12 different predictors, with the most reported predictor of delays being the type of treatment received (n = 12, 21%) [46, 47, 49, 54, 55, 57, 58, 59, 62, 68, 71, 72], followed by the race of patients (n = 7, 12%) [39, 40, 46, 48, 51, 54, 55]. Only 17 (30%) evidence sources reported the effects TiC had on oncologic outcomes for patients [34, 38, 39, 43, 51, 52, 54, 55, 58, 67, 71, 73, 76, 79, 80, 82, 83]; survival was reported by 14 evidence sources, and all but three of these sources found that increased delays led to decreased survival in patients (19%) [34, 38, 39, 43, 51, 52, 54, 55, 58, 67, 76, 79, 80, 83]. Increased delays in care were associated with patients being diagnosed with more advanced cancer [79], having longer lengths of hospital admission [71], more comorbidities [82], and higher cancer‐specific survival and locoregional recurrence [73]. Four evidence sources focused on factors associated with patient discharge and readiness (7%) [33, 56, 60, 75]. The quality of discharge education and having a caregiver involved were found to influence patient readiness for discharge [75]. Two sources focused on patient satisfaction with survivorship clinics and found a high level of satisfaction, while another source determined factors for patient discontinuation of survivorship care [36, 53]. Demographic and oncological factors were found to be associated with discontinuation of survivorship care and also affected the location where patients were discharged [53, 56].

3.6. Intervention Characteristics

Eight evidence sources described or evaluated interventions to improve TiC (14%) [40, 41, 42, 60, 63, 66, 74, 84]. The majority of the interventions focused on improving both patient and system outcomes (n = 5, 9%) [40, 41, 42, 66, 74]; three of the interventions focused on patient outcomes only (n = 3, 5%) [60, 63, 84]. Among those evidence sources that described or evaluated interventions, most were pilot studies (n = 3, 5%) [60, 63, 84] and studies that described the development, implementation, and evaluation of an intervention (n = 3, 5%). One of the pilot studies aimed to improve ward discharge planning for patients using the Patient Concerns Inventory [60], while the other two implemented technology to assess health outcomes remotely for patients [63, 84]. Three sources were focused on guideline‐adherent postoperative radiation therapy (PORT) (5%) [40, 41, 42]. Graboyes et al. measured adherence to guidelines for PORT then explored the barriers for non‐adherence and then created a multilevel intervention to target guideline adherent PORT called NDURE (navigation for disparities and untimely radiation therapy) [42]. One evidence source implemented a new prediction tool (called LIST) to estimate 30‐day readmission rates in patients [74] and the final source implemented a remote telescopic pathway to streamline and manage two‐week‐waits in HNC referrals to improve efficiency [66].

3.7. Qualitative Themes

Of the evidence sources that included qualitative data either through qualitative studies (n = 6, 10%) [41, 65, 69, 87, 88, 89], mixed‐methods studies (n = 1, 2%) [42], or multi‐methods studies (n = 1, 2%) [33]. Analysis for qualitative studies was split with the most evidence sources reported using inductive thematic analysis (n = 2, 25%) [33, 65], deductive content analysis (n = 2, 25%) [69, 87], and content analysis (n = 2, 25%) [42, 89]. Most commonly, evidence sources included qualitative data from patients (n = 3, 38%) [42, 69, 87], but two evidence sources included data from patients and providers (25%) [41, 89]. One source that included data from patients and their caregivers (13%) [33], another one included data from patients, providers, and caregivers (13%) [65], and the last evidence source included data from patients and policymakers (13%) [88]. The most common subtheme across the eight evidence sources was patient preparedness and awareness of treatment (n = 5, 63%) [33, 41, 65, 69, 87]. Provider education and training [88], and program evaluation [42], were unique to two different evidence sources. From these evidence sources three main themes emerged: (1) Patient‐centered care, (2) communication and information flow, and (3) care continuity, with subthemes for each main theme (Figure 4). Quotations for each theme from patients and/or providers were included to further highlight the experiences from TiC (Supporting Information: File S4).

FIGURE 4.

The qualitative themes identified from the included evidence sources. [Color figure can be viewed at wileyonlinelibrary.com]

3.8. Theme 1: Patient Centered Care

In this theme, three subthemes emerged: patient preparedness and awareness for treatment (n = 5), patient symptoms and side effects of the HNC (n = 4), and support from social networks and providers (n = 3). Almost all qualitative (88%) evidence sources examined at least one aspect of patient‐centered care (n = 7). Awareness was related to perception and knowledge of TiC. One source focused on patient preparedness for the transition from diagnosis to treatment and found that patients felt that they needed additional appointments with more information to be well‐prepared [65]. Patients also highlighted the ongoing struggles related to their diagnosis and treatment, including difficulties with eating, pain management, side effects of treatment such as radiation and chemotherapy, and concerns related to oral health and nutrition [69, 87, 89]. Many patients also touched on ways they coped with symptoms and tried to improve their quality of life [69]. There was emphasis on the important role of social interactions, such as spending time with relatives, pets, and developing relationships with healthcare professionals, on their health, confidence, and self‐care [88].

3.9. Theme 2: Communication and Information Flow

The second theme that emerged was related to communication and information. This included two subthemes: provision of information and education to patients and families (n = 4), and correspondence between providers regarding patient plans (n = 4). All but one evidence source (88%) examined at least one aspect of communication and information flow (n = 7). The balance between enough but not too much information was a challenge. Excess information provision led to patients feeling overwhelmed in the early stages of treatment [33, 69], and large discharge packets were not used because they were intimidating; patients suggested exploring better ways to disseminate important information to patients and families [33]. Also, the need for effective communication among healthcare teams was heavily emphasized by patients as well as providers due to the amount of different information patients received from different providers [89]. Moreover, patients expressed the need for clear organizational processes and improved coordination between care settings. For example, including the documentation of important health information to facilitate understanding between specialty and primary care providers [89]. In addition, the care coordination across the teams is often out of sync, which leads to delays [41].

3.10. Theme 3: Care Continuity

The final theme that emerged was related to the flow and timing of care. This theme included four subthemes: timeliness of care (n = 3), facilitators and barriers to care (n = 3), and post‐treatment care (n = 2). Over three‐quarters (75.0%) of evidence sources examined at least one aspect of care continuity (n = 6). Delays between healthcare provider visits (general practitioner or dentist and the first appointment at a specialized hospital) were concerns, which were partly due to a lack of knowledge and awareness of HNC [88]. Another suspected reason for delays by patients was the lack of communication between providers, specifically around palliative care, where issues could arise around the lack of guidance about the optimum time to commence palliative care [65]. Another example was delays in adjuvant treatment; for example, surgical complications can delay starting radiation [41]. A TiC that was particularly challenging was the transition between the hospital and home. Patients felt that caregivers should be included in the transfer so that they are well informed about the condition of the patient [88]. Patients also desired additional information regarding what to expect at home, which could mitigate returning to the hospital. For example, patients reported how overwhelming it was to take care of themselves at home, including taking care of tracheostomies and the feeding processes [33]. Finally, the evolving role of virtual care (vs in‐person) for follow‐up was discussed. Patients believed the use of virtual care was more convenient and resulted in faster results, while others believed there was a loss of personal connection and verbal cues when utilizing virtual care [90].

4. Discussion

This scoping review identified 57 evidence sources that explored TiC among patients with HNC, which varied with regard to objective, study design, outcome measures, and participant characteristics. The findings of this study confirm the complex, multifaceted nature of TiC for patients living with and beyond HNC, encompassing many transitions across various stages of the cancer care continuum and between different healthcare providers and settings. The review identified challenges faced by patients with HNC during care transitions, including issues related to information provision, symptom management, communication gaps, and continuity of care. Some gaps in the evidence were identified and should be considered when conducting research examining TiC among individuals living with and beyond HNC. While many studies on TiC among individuals living with and beyond HNC were identified, there are still gaps in the evidence; there were some TiC that had sparse evidence, the outcomes reported were heterogeneous, and the evidence around interventions to improve the quality of TiC was in its infancy.

A diagnosis of HNC can be devastating, and the processes of care that follow can be complex. For these reasons, it is not surprising that the majority of included evidence sources explored the transition from diagnosis to treatment. Indeed, this phase of care poses several challenges associated with treatment decision‐making and initiation [91]. However, as identified in the qualitative data, there are persistent, patient‐identified challenges with TiC during the treatment phase of the HNC journey [33, 88]. Given the intense nature of HNC treatment, characterized by multimodal therapies (surgery, radiation, chemotherapy, immunotherapy) and complex symptom management, further research exploring the challenges and needs of patients navigating this phase of care is warranted [92]. Until there is a clear understanding of TiC among individuals undergoing treatment for HNC, tailored interventions to improve the quality of TiC cannot be developed or implemented.

Another challenge related to improving the quality of TiC is the heterogeneous approach to evaluating and reporting on TiC. While beyond the scope of this review, the variation in the types of outcome variables and measurement of these variables hinders the ability to pool estimates in an attempt to report on the quality of TiC among individuals living with and beyond HNC moving forward. This heterogeneity is likely related to the uniqueness of each TiC, suggesting both universal measures of TiC and TiC‐specific measures are needed. Among the outcomes reported in the included evidence sources, many were delays related to TiC, especially since 2020, which may reflect the time‐sensitive nature of HNC but also influences of external factors such as the COVID‐19 pandemic. The period following 2020 saw an unprecedented disruption in healthcare systems worldwide, with widespread delays in cancer care [93, 94]. As a result, researchers and healthcare professionals may have been compelled to quantify delays in TiC for patients with HNC to understand the impact of these disruptions on patient outcomes. While the importance of timely cancer care has been documented [95, 96, 97], additional focus on other outcomes, such as adverse events during TiC, should be further explored in future research. Adverse events, unintended harm due to care (not underlying disease), include medication errors, hospital readmissions, and complications stemming from miscommunication between healthcare providers. Medication discrepancies are common and often significant and pose risks to patient safety during TiC [98, 99, 100]. Kwan et al. (2013) and Redmond (2013) both found that medication reconciliation interventions, led by pharmacists, can reduce these discrepancies [98, 100]. Adverse events are common during some TiC, such as the transition between the intensive care unit and hospital, but are not well described in the evidence sources included in this review [101]. It is important to explore diverse outcomes among patients with HNC during TiC so that there are metrics to be used to measure the quality of TiC and the effectiveness of interventions to improve TiC.

Measuring the quality of TiC requires a nuanced approach which assesses factors like communication effectiveness, patient satisfaction, and continuity of care [102]. This includes using measures such as tracking readmission rates, adherence to discharge instructions, or the timeliness and comprehensiveness of care plans shared between providers [102]. Collecting both quantitative and qualitative data on TiC allows us to identify patterns, highlight deficiencies, and prioritize areas for intervention. The predominance of quantitative studies in our scoping review indicates a strong focus on empirical investigation of transitions in HNC care, often emphasizing measurable outcomes and statistical analyses. While quantitative research provides valuable data on prevalence, trends, and associations, there is also a need for qualitative studies to explore the experiences and perspectives of patients, caregivers, and healthcare providers regarding transitions in care [103, 104]. Qualitative research offers insight into the multifaceted psychosocial, cultural, and contextual factors influencing transition experiences. It acts as a valuable complement to quantitative data [105].

The gaps related to the measurement of the quantity and quality of TiC among individuals living with and beyond cancer can make it difficult to measure the effectiveness of interventions aimed at improving the quality of TiC. This review identified eight studies that described or implemented interventions to improve specific TiC. In order to establish the effectiveness of these interventions and to explore comparative effectiveness, a standardized approach to outcome measurement is needed, including a set of metrics for evaluating the quality of TiC. We advocate for using a framework, such as the National Academies of Medicine six domains of quality care [106], as the foundation for developing a set of quality indicators.

5. Conclusion

This scoping review offers a comprehensive synthesis of evidence on TiC among individuals living with and beyond head and neck cancer, which has been identified as a priority. This review enhances our understanding of the challenges and complexities surrounding TiC in this patient population. Moving forward, efforts should focus on improving TiC among individuals living with and beyond HNC, including designing, developing, and evaluating patient‐centered approaches to enhance communication and coordination of care to meet the unique needs of individuals with HNC. To be able to measure the effectiveness of interventions, standardized approaches to measuring and evaluating the quality of TiC are needed. This review can inform the development of such metrics.

Author Contributions

K.M. Sauro, S.P. Chandarana, and J.C. Dort contributed to the study design and conception. The search strategy was developed by D.L. Lorenzetti in collaboration with K.M. Sauro. Data collection was done by A. Hezam, J. Kersen, S. Kurbatfinski, A. Thomas, and S. Ibadin. Data analysis and interpretation were done by L. Fillo. L. Fillo wrote the first draft of the manuscript, and all other authors provided critical feedback and approved the final draft being submitted.

Ethics Statement

The authors have nothing to report.

Conflicts of Interest

The authors declare no conflicts of interest.

Supporting information

Data S1: Supporting Information.

Data S2: Supporting Information.

Data S3: Supporting Information.

Data S4: Supporting Information.

Appendix A. Standardized Data Abstraction Form Headings

Categorization	Abstracted data
Evidence source characteristics	Author(s), Published Year, Title, Country, Region, Language, Publication Style, Study Design, Methods, Description of Methods, Length of Data Collection, Years of Data Collection
Publication style	Journal Article, Dissertation, Conference Proceeding, Book, Editorial, Perspective, Guidelines, Correspondence
Research objective categorization	Patient, Family, Carer, and Healthcare Provider Perspectives on TiC Examination of Risk Factors, Covariates, Protocols or Frequency of TiC Examination or Description of Care Profiles or Patient Characteristics Analysis of Patient, Family, or Healthcare Provider's needs during TiC Analysis of Delays (Frequency, Risk Factors, Length, and Effect on Patient Outcomes) Evaluation, Review, or Implementation of an Intervention or Program Description, Review, or Analysis focussed on Continuity of Care
Sample characteristics	Population Description, Eligibility Criteria, Healthcare Environment Healthcare Professionals Involved, Included Databases, Sample Size, Percentage Female, Percentage Male, Median Age, Age Range, Cancer Type
Cancer type categorization	Multiple, Breast, Colorectal, Head and Neck, Lymphoma, Lung, Pancreatic, Testicular, Thyroid, Melanoma, Endometrial, Brain, Hematologic, Prostate, and Other
Transitions in care categorization	Multiple, Active Treatment to Survivorship, Hospital to Home, Active Treatment to Palliative, Active Treatment to Follow Up, Oncology to Primary Care, Hospital to Hospital, Provider to Provider, Readmission, Discharge, Other Setting to Hospital, Hospital to Other Setting, End of Life TiC, Active Treatment to Posttreatment, Active Treatment to Primary Care, and Other
Transitions in care characteristics	TiC Investigated, Number of TiC, Reason for TiC, Risk Factors for TiC, Outcomes of TiC, Recommendations to Improve TiC, Qualitative Themes Related to TiC, Exemplar Quotes of Qualitative Themes Related to TiC
Intervention characteristics	Intervention (Yes/No), Intervention Description, Intervention Evaluation Measurement, Additional Evaluation Measures, Intervention Evaluation Outcome, Recommendations of Intervention
Patient outcomes	Patient Outcomes Evaluated (Yes/No), Description of Patient Outcomes Evaluated, Evaluation Measures of Patient Outcomes, Additional Outcomes
Publication characteristics	Publication Journal, Journal Impact Factor, Number of Citations, Author Conflicts of Interest (Yes/No)

Fillo L., Hezam A., Kersen J., et al., “Exploring Transitions in Care Among Patients With Head and Neck Cancer: A Scoping Review,” Head & Neck 48, no. 3 (2026): 794–812, 10.1002/hed.70061.

Data Availability Statement

Data sharing not applicable to this article as no datasets were generated or analysed during the current study.