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Exploring transitions in care among patients with head and neck CANCER: a multimethod study

BMC Cancer volume 24, Article number: 1108 (2024) Cite this article

Abstract

Background

Patients with head and neck cancers (HNC) experience many transitions in care (TiC), occurring when patients are transferred between healthcare providers and/or settings. TiC can compromise patient safety, decrease patient satisfaction, and increase healthcare costs. The evidence around TiC among patients with HNC is sparse. The objective of this study was to improve our understanding of TiC among patients with HNC to identify ways to improve care.

Methods

This multimethod study consisted of two phases: Phase I (retrospective population-based cohort study) characterized the number and type of TiC that patients with HNC experienced using deterministically linked, population-based administrative health data in Alberta, Canada (January 1, 2012, to September 1, 2020), and Phase II (qualitative descriptive study) used semi-structured interviews to explore the lived experiences of patients with HNC and their healthcare providers during TiC.

Results

There were 3,752 patients with HNC; most were male (70.8%) with a mean age at diagnosis of 63.3 years (SD 13.1). Patients underwent an average of 1.6 (SD 0.7) treatments, commonly transitioning from surgery to radiotherapy (21.2%). Many patients with HNC were admitted to the hospital during the study period, averaging 3.3 (SD 3.0) hospital admissions and 7.8 (SD 12.6) emergency department visits per patient over the study period. Visits to healthcare providers were also frequent, with the highest number of physician visits being to general practitioners (average = 70.51 per patient). Analysis of sixteen semi-structured interviews (ten patients with HNC and six healthcare providers) revealed three themes: (1) Navigating the healthcare system including challenges with the complexity of HNC care amongst healthcare system pressures, (2) Relational head and neck cancer care which encompasses patient expectations and relationships, and (3) System and individual impact of transitions in care.

Conclusions

This study identified challenges faced by both patients with HNC and their healthcare providers amidst the frequent TiC within cancer care, which was perceived to have an impact on quality of care. These findings provide crucial insights that can inform and guide future research or the development of health interventions aiming to improve the quality of TiC within this patient population.

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Background

Head and Neck Cancers (HNC) are a group of cancers that affect diverse anatomical structures including the pharynx, larynx, naso-, oro-, hypopharynx, nasal cavity, oral cavity, middle ear, and salivary glands [1]. HNC are the sixth most common cancer in the world [2] accounting for approximately 931,931 new diagnoses worldwide each year, with a projected 30% annual increase by the year 2030 [1, 3]. There are several risk factors for HNC which include alcohol and tobacco use, malnutrition, lower socioeconomic status, age, sex, exposure to carcinogens and contracting the Human Papilloma Virus (HPV) [4, 5]. The presence of these risk factors results in differences in disease presentation, progression, and patient outcomes [6, 7]. Although the 5-year age-standardized survival rates for HNC vary between countries and the site of the HNC, they remain relatively low, with age standardized estimates ranging from 2.5 to 8.3 per 100,000 [8,9,10,11].

Patients with HNC are cared for by multidisciplinary healthcare teams which collaboratively develop treatment plans, manage treatment sequelae, and provide comprehensive supportive care and rehabilitation [12, 13]. These treatment plans often include a combination of surgery, radiation, chemotherapy, and immunotherapy [12, 14]. As a result of their complex treatment plans, and vulnerability to physical and psychological effects from HNC and its associated treatments, patients with HNC are some of the highest users of healthcare resources [15,16,17]. As this patient population requires care from many healthcare providers across different healthcare settings, they consequently experience many transitions in care (TiC) [12, 18, 19]. TiC occur when the responsibility for a patient’s care is transferred between healthcare providers, institutions, or settings [20]. TiC can also occur when patients move from one level of care to another (e.g., from the intensive care unit to the hospital ward) [20]. TiC represent a challenging period in the delivery of care as they interrupt continuity of care, opening opportunities for inadequate transfer of information and potential breakdown in communication [21]. In other patient populations, poorly executed TiC have been associated with compromised patient safety, increased medical errors, high distress levels in patients and their families, excessive healthcare cost and resource use [22,23,24,25,26,27]. As such, organizations such as the Joint Commission and the National Academy of Medicine have identified a critical need to effectively bridge the TiC that patients experience to help mitigate adverse effects on patient health outcomes [28, 29]. Despite the complex multidisciplinary care of patients with HNC and the established risks of poor care during TiC, there is a gap in our understanding of TiC for patients with HNC.

The objectives of this study are to (1) estimate the number and type of TiC patients with HNC experience, (2) understand TiC from the perspective of patients with HNC and healthcare providers, (3) explore the quality of care during TiC, from the perspective of patients with HNC and healthcare providers.

Methods

This multimethod study was approved by the University of Calgary Health Research Ethics Board of Alberta (HREABA.CC-20-0474) and consisted of two distinct phases: a retrospective population-based cohort study and a qualitative descriptive study.

Phase 1: retrospective cohort study

Setting

This study was conducted in Alberta, Canada where healthcare services are provided by a provincially integrated single-payer healthcare system (Alberta Health Services (AHS)) [30, 31]. AHS is the largest integrated provincial healthcare system in Canada [31] composed of 106 acute care hospitals, five psychiatric facilities, and partners with 40 primary care networks [30]. Cancer care for patients with HNC is delivered by AHS in two main cancer care centres in Alberta: Tom Baker Cancer Centre in Calgary and the Holy Cross Cancer Centre in Edmonton [30, 31] .

Population and data sources

This retrospective population-based cohort study quantitatively characterized the number and type of TiC that patients with HNC experience throughout their cancer journey, using routinely collected, population-based administrative health data. The cohort included adult patients (\(\:\ge\:\:\)18 years old) diagnosed with HNC in Alberta between January 1, 2012, to September 1, 2020, as indicated by a record in the population-based Alberta Cancer Registry (ACR).

Data from four administrative health data sources were deterministically linked using a unique personal healthcare number that is assigned to each person in the province at birth or immigration to the province and follows them throughout their life. The ACR, a population-based registry, records patient demographic information (name, date of birth, sex, postal code) and cancer-specific variables (diagnosis with dates, pathology, treatments with dates, and staging) [32]. The Discharge Abstract Database (DAD) includes information on acute care hospital admissions including demographics, diagnoses (using the International Classification of Disease version 10 (ICD-10) codes), procedures, and admission and discharge information [33]. Physician billing claims include diagnostic codes (ICD-9) assigned by physicians used to bill the Government of Alberta for services provided to patients. The National Ambulatory Care Reporting System (NACRS) collects demographic, administrative, clinical, and service-specific data from both hospital-based and community-based ambulatory care visits [34, 35].

Variables

Patient demographic variables (age, sex, and socioeconomic status), cancer-related variables (site, stage, and presence of multiple tumours) and treatment-related variables (treatment modalities) were extracted from ACR. The Charlson Comorbidity Index (categorized as 0,1,2+) was calculated using established coding algorithms [36].

The primary outcome variables were the number and type of TiC. The TiC examined included the transitions between treatments, healthcare institutions (hospital visits and associated discharges, emergency department visits), and different healthcare providers. The type of TiC variables were dichotomously coded, with a 0 indicating that a patient did not experience a TiC and a 1 that a patient experienced a TiC (Supplementary Table 1). TiC rates were computed individually for each patient across four distinct periods: six months before diagnosis, from diagnosis to initial treatment, one-year post-first treatment, and three years post-first treatment.

Analysis

The cohort characteristics were described using descriptive statistics; means with standard deviations (SD) or medians and interquartile ranges (IQR) where appropriate, and frequencies (proportions). The TiC rates were calculated as number per month across the 4 periods described above. All analyses were conducted using STATA 16 SE [37]. This phase is reported according to the STrengthening the Reporting of Observational Studies in Epidemiology (STROBE) and the REporting of studies Conducted using Observational Routinely-collected Data (RECORD) (Appendix 1) [38, 39].

Phase 2: qualitative description

The qualitative descriptive study followed the general tenets of naturalistic inquiry to provide a richer understanding of TiC and care delivery among patients with HNC and their healthcare providers [40, 41]. In-depth, semi-structured interviews were conducted with two participant groups: (1) adult patients with HNC, who received care in Alberta, at any stage of their cancer journey and (2) multi-professional healthcare providers who care for patients with HNC in Alberta. This phase was reported in line with the Consolidated Criteria for Reporting Qualitative Research (COREQ) (Appendix 2) [42].

Participants and recruitment

Recruitment occurred between September 1, 2022, to July 15th, 2023. Different sampling strategies were employed for the two participant groups. Patients with HNC were recruited through purposive sampling and employed media-based approaches to ensure maximum variation in patient characteristics [43]. Healthcare providers were also recruited through purposive sampling, using the researchers’ professional networks. All potential participants were provided with the contact information for the principal investigator.

Data collection

Interviews were completed using semi-structured interview guides uniquely developed for each participant group, informed by our methodological framework. These guides included open-ended questions relevant to the objectives of the study and probing questions to elicit data [44]. The interview guides were pilot-tested within the research team and iteratively refined by the authors (J.K and K.M.S).

Semi-structured interviews were conducted via telephone (n = 2) or secure video conferencing platform (Zoom) (n = 14) [45] with no other participants present. The interviews were conducted by the first author (J.K) who has formal graduate training and practical experience in qualitative methods and interview facilitation. The interviewer did not have any previous relationships with patients with HNC, however, due to the sampling method for healthcare professionals, the interviewer had a professional relationship with one of the included healthcare providers. The interviews were audio recorded and transcribed verbatim using transcription services (rev.com), with a unique study identifier replacing the participant’s name. Participants were recruited and data was collected until saturation was reached. Saturation was achieved when no novel themes were generated from the data [46].

Written, informed consent was obtained from all participants before participating in the semi-structured interviews. Additional consent was received from all participants to audio record the interviews and to use anonymized quotations in research publications and dissemination.

Data analysis

The data from the semi-structured interviews was analyzed using an inductive approach, whereby two independent reviewers (J.K and K.M.S) followed Braun and Clarke’s approach to thematic analysis [46]. Thematic analysis was facilitated by the qualitative software Nvivo [47]. The themes from the patients with HNC and the healthcare providers were also compared and contrasted to ensure alignment to an overarching central concept [48]. Qualitative analysis and generated themes were discussed with the study team to facilitate peer debriefing [41] .

Reflexivity

The interview facilitator and first analyst (J.K) was a graduate student (MSc), familiar with evidence suggesting that TiC are vulnerable periods for patients. The second analyst (K.M.S) was an Assistant Professor whose broad research area encompassed TiC among patients with HNC. Due to their previous experiences and knowledge, both researchers acknowledged that their perception of TiC may be inherently negative and this was frequently debriefed with the team in order to consciously reduce any impact on their findings. Throughout the research process, the reviewers also critically examined their assumptions and challenged them to mitigate any potential bias.

Results

Retrospective cohort study

The cohort included 3,752 patients with HNC. Demographic characteristics of the cohort are presented in Table 1. Briefly, most patients were male (70.8%) and had a mean age at diagnosis of 63.3 years (SD = 13.1).

Table 1 Demographic characteristics of the cohort
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The overall, all-cause mortality of patients was 44.86% (n = 1,683) within the study period. The mean number of TiC per patient was 210.3 (SD = 164.6). The mean TiC rate per patient was 7.7 (SD = 10.2) during the six months preceding diagnosis. Following diagnosis and before the first treatment, the mean TiC rate per patient increased to 23.1 (SD = 34.9) per patient. Subsequently, the mean TiC rate per patient declined to 4.2 (SD = 5.3) one year post-first treatment with a further decrease to 2.0 (SD = 2.2) per patient three years post-first treatment. Patients with HNC had frequent transitions between different treatments. A total of 47.9% of patients underwent two or more treatments during the study period, with an average of 1.6 (SD = 0.7) treatments per patient. The most common treatment was radiotherapy, followed closely by surgery; the most common treatment transition was the transition from surgery to radiotherapy (21.2%) (Table 2).

Table 2 Transitions in care related to treatment
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Many patients with HNC were admitted to the hospital during the study period (Table 3), with an average of 3.3 (SD = 3.0) hospital admissions per patient. When patients were admitted to hospital, frequently they were admitted from home (82.6%) and discharged to home with no support (as indicated in their discharge report; 82.8%) (Table 3). Visits to an emergency department were common (n = 3,475 patients) with an average of 7.8 (SD = 12.6) visits per patient during the study period. The number of emergency department visits increased after diagnosis and again after the first treatment (Table 4). The highest number of physician visits were to general practitioners (family medicine) (average = 70.6 per patient) followed by other specialists (average = 65.2 per patient; Table 5). The number of visits to most healthcare providers increased after diagnosis (Table 5).

Table 3 Transitions in care related to hospital admissions
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Table 4 Transitions in care related to emergency department visits
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Table 5 Physician visits
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Qualitative description

Sixteen interviews (ten patients and six healthcare providers) were conducted between July 17th, 2022, to June 7th, 2023. The interviews ranged between 30 and 90 min (median = 46 min). The mean age of patients with HNC at the time of the interview was 66 years old (range = 47–77 years), most were female (n = 7, 70%) and experienced many TiC. Healthcare providers included surgeons (n = 3), a medical oncologist (n = 1), a radiation oncologist (n = 1), and a licensed practical nurse (n = 1). The healthcare providers were mostly male (n = 4), with the average years of practice being 21 years (range = 7.5–31 years).

Themes

The qualitative analysis generated three interconnected themes: (1) Navigating the Healthcare System (subthemes: head and neck cancer care complexities, disrupted continuity of head and neck cancer care, and healthcare system pressures), (2) Relational Head and Neck Cancer Care (subthemes: patient expectations during Transitions in Care, feeling valued as a Head and Neck Cancer patient and healthcare provider roles and responsibilities) and (3) System and Individual Impact of Transitions in Care (subthemes: impact of resource-intensive nature of TiC and the Impact of Transitions in Care on Quality of Care). Additional exemplar quotations for each theme are presented in Table 6.

Table 6 Exemplar quotations for the qualitative themes from the semi-structured interviews
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Navigating the healthcare system

Despite the healthcare system’s overarching goal of providing high-quality care, participants expressed struggles with navigating complex healthcare systems, leading to poor quality of care.

Head and neck cancer care complexities

While both patients with HNC and healthcare providers reported that navigating the complexities of HNC care is challenging, healthcare providers noted the necessity for multidisciplinary care, while patients described confusion by the care pathways used during their treatment. Patients perceived their care to be overly complex, involving many healthcare disciplines and many of the processes were unfamiliar to them. Although healthcare providers recognized the need for care pathways, guidelines, and protocols to ensure standardized care, they also recognized that patients did not intuitively know how to navigate these complex pathways and the health system.

Disrupted continuity of head and neck cancer care

Patients and healthcare providers described a siloed healthcare system which affected all aspects of patient care, hindering communication, resulting in prolonged waits, and disrupting the continuity of care. There were many instances where healthcare silos were identified as the cause of communication breakdowns among patients with HNC and their healthcare providers, with patients struggling to contact the appropriate healthcare providers and the communication between the multidisciplinary healthcare teams becoming strained. However, only patients with HNC associated the siloed healthcare system structure with prolonged waits and fragmented care, reporting wait times of five to six weeks between different healthcare departments (surgery, dermatology, and psychiatry) and lapses in continuous care. Healthcare silos were physical and geographical, requiring patients to travel to different healthcare institutions for their care.

Patients with HNC and healthcare providers proposed potential solutions which they felt could address these issues, including consolidating healthcare teams and departments into a centralized facility and the direct communication via telephone between patients, oncologists, and other healthcare providers.

Healthcare system pressures

Patients with HNC and healthcare providers recognized that a prominent constraint facing the healthcare system is the shortage of trained healthcare professionals. Patients with HNC described inadequate access to healthcare providers, specifically primary care providers and psychologists who they felt were critical to their care. Healthcare providers commonly noted that constrained human resources necessitated taking on additional responsibilities beyond their designated roles, often without appropriate support or adjustment to their workload. Healthcare providers, most notably specialists, were sometimes placed into uncomfortable situations where patients expected them to manage their daily care which is beyond their scope of practice.

Relational head and neck cancer care

Patients with HNC and healthcare providers identified interconnected factors including patients’ expectations of their care, their perception of being valued within the healthcare system and their understanding of healthcare provider roles and responsibilities that influenced how patients experienced their healthcare journey and TiC.

Patient expectations during transitions in care

Patient expectations of the healthcare system and their care were pivotal in shaping their experiences with cancer care. Some patients faced difficulties aligning what they anticipated their care to look like with the actual care they received. Patients struggled to establish expectations for their TiC that were aligned with their actual care due to their unfamiliarity with the complex healthcare system and the complexity of HNC care. These divergent expectations were especially evident during the transition from active treatment to survivorship when a patient’s interactions with the healthcare team dramatically decreased. Expectations of care not being met also led to heightened frustration and stress among patients with HNC. However, patients hesitated to voice these feelings with their healthcare providers for fear of being labelled as “high maintenance” when advocating for their needs.

Feeling valued as a head and neck cancer patient

Emotional support during the cancer continuum was perceived to be crucial by patients with HNC and healthcare providers. The healthcare providers noted that professional psychological care, although in short supply, is a key source of support. However, patients perceived the existing patient-provider relationship as an equally crucial source of support. Strong patient-provider relationships were rooted in mutual knowledge, respect, and trust and thrived when healthcare providers exhibited compassion and empathy. Patients valued long-lasting patient-provider relationships, which extended beyond a specific episode of care, creating an enduring continuum of support. While an abundance of patients experienced strong patient-provider relationships, some patients had weak patient-provider relationships, where the relationship lacked trust, communication and collaboration leaving patients feeling unsupported and abandoned. These weak patient-provider relationships triggered patients to transition to other healthcare providers more frequently. Patients with HNC proposed that further involvement in the decision-making process would help make them feel valued. They expressed a desire to have their opinions heard, particularly when it came to decisions that governed their care during TiC.

Healthcare provider roles and responsibilities

Patients with HNC and healthcare providers acknowledged that there is a lack of clarity about the specific roles and responsibilities of each healthcare provider caring for patients with HNC. This lack of clarity was especially endorsed by patients. Patients found understanding who was responsible for specific aspects of their cancer care (usually by oncologists) and non-cancer related care (usually by general practitioners) confusing which led to challenges in deciding who to consult about their concerns, with the general practitioners and oncologists often redirecting the patient to each other. To add to this confusion, the addition of medical residents and fellows to the patients with HNC’s care team was described as confusing and disruptive.

System and individual impact of transitions in care

Patients and providers experienced TiC differently during the cancer continuum. Healthcare providers perceived TiC as contributing to increased workloads and emotional distress, while patients with HNC associated TiC with decreased quality of care due to ineffective care and lack of patient-centeredness.

Impact of resource-intensive nature of transitions in care

Healthcare providers perceived the volume of tasks associated with TiC contributed to the burden on healthcare providers and patients with HNC. Many healthcare providers noted that high-quality TiC demanded significant time and effort to do well (transfer information between providers). Additional challenges related to ensuring a high-quality TiC included, adapting to evolving electronic health record systems and collaborating with patients and colleagues. The extensive documentation required during TiC also created time constraints for healthcare providers, preventing them from spending adequate time with each patient. The introduction of a new electronic medical records system in Alberta further compounded this issue, with surgeons and oncologists describing difficulties in understanding and utilizing the system when transferring a patient’s care, potentially resulting in insufficient information for the healthcare provider the patient is transitioning to. Additionally, healthcare providers noted that the additional responsibilities associated with TiC led to heightened stress levels and emotional repercussions due to witnessing their patients deteriorate after experiencing poor TiC. Although the resource-intensive nature of TiC was commonly discussed by healthcare providers, patients with HNC also described instances where they had to dedicate significant time and effort to organize their care, facilitate communication between healthcare providers and access information during TiC. A widely endorsed solution by both patients with HNC and their healthcare providers to improve TiC was the introduction of a care coordinator or patient navigator envisioning it as a strategy to improve TiC.

Impact of transitions in care on quality of care

The opinions of patients with HNC and their healthcare providers diverged when discussing the factors that influenced the quality of care throughout the cancer continuum. Patients highlighted areas that needed improvement such as effectiveness and patient-centeredness. Ineffective care occurred when healthcare providers (especially primary care providers and dentists) failed to provide the appropriate care or identify symptoms as potential cancer resulting in prolonged diagnosis. A lack of patient-centeredness was noted by patients when healthcare providers did not take the time to understand them holistically, resulting in healthcare that was not customized around a patient’s needs, characteristics and preferences. In contrast, healthcare providers focussed on the broader healthcare system barriers including budgetary constraints and a lack of awareness about TiC. Healthcare providers believed that the allocated operating budgets were constrained, which prevented the optimization of HNC care within the healthcare system. Additionally, healthcare providers emphasized the lack of awareness about TiC and their consequences for patient outcomes and healthcare expenditure.

Discussion

This multimethod study quantified the large number and variety of types of TiC patients with HNC encounter during their care; patients with HNC had an especially high number of emergency department visits, hospital admissions and visits to general practitioners. The high number of TiC was described as a source of distress by patients and providers.

The findings of this study are consistent with evidence showing that patients with cancer use a high amount of healthcare resources. Studies have found that patients with cancer account for 10.5% of hospital admissions and patients with lung and colorectal cancer have, on average, 3.3 hospital admissions (Sauro K: Transitions in care among patients with lung, bladder, colorectal and head and neck cancer: A retrospective cohort study, In preparation). Similarly, in the present study patients had, on average, 7.8 emergency department visits during the study period, which may be higher compared to other oncological patient populations with a median number of emergency department visits of 2.0 over 4 years [49]. The differences in estimates between the present study and previous work may be partly explained by differences in patient populations and the objectives of each study. Similarly, consistent with our findings that patients with HNC consult many physicians, previous work found that patients with cancer see a median of 32 different physicians during their cancer journey [50]. Unfortunately, each TiC represents an opportunity for the occurrence of medical errors, adverse events, increased mortality risk, low patient satisfaction, elevated emergency department visits and poor quality of care [51,52,53,54,55,56]. Poor quality of care can stem from challenges reported in this study such as fragmented care, resource limitations and communication breakdowns between patients and healthcare providers. Patients with HNC in this study also emphasized the importance of patient-centeredness which are pillars of quality of care, and mirror findings in other oncology patient populations [57,58,59,60], where it has been reported that preferences, values, and needs are not adequately considered in their care [57, 58, 61].

As healthcare providers play a pivotal role in delivering care, factors such as physician wellness and burnout have been associated with poor quality of care [62, 63]. Oncology ranks as a highly stressful specialty compared to other healthcare specialties (internal medicine, neurology, and cardiology), leading to higher healthcare provider burnout rates [64, 65]. This elevated burnout can also be attributed to electronic health records usage, high workloads, and emotional distress resulting from long hours, high work intensity, time constraints and under-resourced work environments [63, 66,67,68,69]. Our findings illustrate a need to develop and implement tailored interventions prioritizing quality of care and alleviating healthcare provider burnout. Addressing the challenges identified by patients with HNC and their healthcare providers can help bridge the quality-of-care gaps within HNC care.

While the present study found a high number of TiC among patients with HNC, some of these transitions are appropriate and necessary to provide high-quality, evidence-based care. While minimizing the TiC can decrease the risk associated with these vulnerable points in cancer care, another approach, which acknowledges the importance and necessity of TiC is to develop interventions to improve TiC. While some of the patient suggested strategies are innovative and understudied (consolidating HNC care), others have been shown to be effective at improving the quality of care during TiC [70, 71]. Shared decision-making (patients and their healthcare providers jointly making informed treatment decisions) [72], reduces decision conflict, sets accurate expectations, and aligns with patient values [73, 74]. Telehealth (the process of facilitating or delivering health services through any form of digital or telecommunication) [75], can improve TiC (reduce preventable hospital admissions) by fostering better multidisciplinary communication, strengthening the patient-provider relationship, and mitigating the impact of healthcare-provider shortages [76,77,78,79]. However, telehealth may not be feasible among a patient population whose ability to hear and speak can be significantly compromised. The implementation of patient navigators within HNC care was the most widely endorsed strategy. Patient navigators are dedicated members of the multidisciplinary team who are liaisons and advocates internally and externally within the healthcare system [80]. This strategy can alleviate some of the concerns expressed by patients with HNC in our study: enhancing continuity of care, providing more information, connecting patients with the most appropriate healthcare provider, and ultimately mitigating the difficulties they face when navigating the healthcare system [81, 82]. Additionally, this resource can ease the strain on healthcare providers by providing patients additional support, therefore, reducing burnout rates, minimizing the occurrence of medical errors and preventing turnover among healthcare providers [83]. In oncology, patient navigators have decreased hospital admissions, optimized resource consumption, increased quality of life and improved patient outcomes, among other benefits [84, 85]. Implementing a feasible and effective intervention such as patient navigators within HNC care can address challenges faced by patients and their healthcare providers during TiC. Future research should investigate the effectiveness of these strategies within HNC care, especially impacts on patient outcomes, provider well-being and the overall healthcare system.

Limitations

This multimethod study integrated both quantitative and qualitative methodology, which generated a rich understanding of TiC among patients with HNC, enhancing the strengths of each method and mitigating their respective weaknesses. In the retrospective cohort study, we were limited to the recorded information and existing variables in the databases used in this study, thus limiting the TiC we could explore. There were also limitations to the qualitative component of this work. Our included patient population is mostly female which does not reflect the general demographic of patients with HNC who is mostly male. This may be attributed to women being more inclined to seek medical attention, visit healthcare facilities and participate in research. Therefore, the perspectives of patients with HNC in our study may be less transferable to other populations of patients with HNC. Potential mitigation strategies for recruitment difficulties could be to partner with additional patient advocacy groups and offer tailored participation incentives for patients.

Conclusions

In conclusion, this study identified a myriad of challenges faced by both patients with HNC and healthcare providers amidst frequent TiC. Our findings suggest that TiC can impact the quality of care and provide crucial insights that can inform and guide future research or the development of health interventions aiming to improve TiC within this patient population. These findings also identified potentially feasible interventions for further exploration, such as shared decision-making, telehealth, or a patient navigator within HNC care.

Availability of data and materials

Data will be made available upon reasonable request to the corresponding author.

Abbreviations

HNC:

Head and Neck Cancers

TiC:

Transitions in Care

HREBA:

Health Research Ethics Board of Alberta

AHS:

Alberta Health Services

STROBE:

STrengthening the Reporting of Observational Studies in Epidemiology

RECORD:

REporting of studies Conducted using Observational Routinely-collected Data

ACR:

Alberta Cancer Registry

DAD:

Discharge Abstract Database

NACRS:

National Ambulatory Care Reporting System

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Acknowledgements

Not applicable.

Funding

This study was supported by an Alberta Graduate Excellence Scholarship and the Cumming School of Medicine Graduate Program Scholarship awarded to Jaling Kersen, and a Canadian Cancer Society Challenge Grant awarded to Khara Sauro. The funders of the study had no role in study design, data collection, data analysis, data interpretation or writing of the manuscript.

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Authors and Affiliations

  1. Department of Community Health Sciences, University of Calgary, Calgary, AB, Canada

    Jaling Kersen, Pamela Roach, Paul Ronksley & Khara Sauro

  2. Department of Surgery, Division of Otolaryngology, Head and Neck Surgery, Calgary, AB, Canada

    Shamir Chandarana & Khara Sauro

  3. Ohlson Research Initiative, Cumming School of Medicine, Arnie Charbonneau Cancer Institute, 3280 Hospital Dr NW, Calgary, AB, T2N 4Z6, Canada

    Shamir Chandarana & Khara Sauro

  4. O’Brien Institute of Public Health, University of Calgary, Calgary, AB, Canada

    Pamela Roach, Paul Ronksley & Khara Sauro

  5. Department of Family Medicine, University of Calgary, Calgary, AB, Canada

    Pamela Roach

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  1. Jaling Kersen
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Contributions

J.K made substantial contributions to the conceptualization of the study, data collection, interpretation of the data, writing the original draft, and reviewing and editing the original draft. K.M.S made substantial contributions to funding acquisition, conceptualization of the study, data collection, interpretation of the data, drafting, revising the original draft, and reviewing and editing the original draft. S.C, P.R, P.R and J.D made substantial contributions to reviewing and editing the original draft. All authors reviewed and critically revised the article and approved the version to be published and agree to be accountable for all aspects of the work.

Corresponding author

Correspondence to Khara Sauro.

Ethics declarations

Ethics approval and consent to participate

This multimethod study was approved by the University of Calgary Health Research Ethics Board of Alberta (HREBA.CC-20-0474). A waiver of consent was granted for the use of the data from the administrative health databases for this study. The Health Research Ethics Board of Alberta grants a waiver of consent provided that the research meets the following criteria: (1) The research involves minimal risk to the participants (2) waiver of consent will not adversely affect the rights and well-being of the participants (3) The research could not be completed without altering the informed consent procedure (4) The proposed alteration is extensively defined and (5) The participants will be given any relevant additional information after participation whenever appropriate.

Consent for publication

Explicit consent was received from all participants to audio record the semi-structured interviews and to use anonymized quotations in research publications and dissemination.

Competing interests

The authors declare no competing interests.

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Kersen, J., Roach, P., Chandarana, S. et al. Exploring transitions in care among patients with head and neck CANCER: a multimethod study. BMC Cancer 24, 1108 (2024). https://doi.org/10.1186/s12885-024-12862-x

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Keywords

BMC Cancer

ISSN: 1471-2407

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