Abstract
Introduction
Research on pre-surgical education and discharge planning for head and neck cancer (HNC) remains limited. To address this gap, this qualitative study aims to assess patient and caregiver perspectives on pre-surgical education and discharge planning in HNC surgery.
Methods and Materials
Semi-structured interviews were conducted with 13 individuals who received HNC surgery and 10 of their caregivers after hospital discharge. Participants were recruited from an NCI-designated Comprehensive Cancer Center and a community oncology setting.
Results
Five key recommendations for HNC surgical care emerged from the data: (1) improve communication about anticipated side effects; (2) provide targeted education through multiple modalities; (3) connect patients and caregivers with individuals who have gone through HNC surgery; (4) improve patient-provider communication for individuals with speech, vision, and hearing impairment; and (5) present the best and worst case scenarios to prepare individuals for post-surgical recovery.
Conclusion
Participants identified gaps in pre-surgical education and discharge planning and provided recommendations to improve HNC surgical care.
Plain Language Summary
The goal of the study was to understand how to better prepare and support individuals with head and neck cancer and their family caregivers before and after surgery. 23 people (13 patients and 10 family caregivers) were interviewed about their experiences. Five recommendations were provided:
1. Improve communication about possible side effects from surgery
2. Provide education in multiple ways
3. Connect patients and caregivers with other people who have gone through surgery
4. Improve communication with individuals who may have trouble hearing, seeing, or speaking
5. Provide information on all possible outcomes including the best case scenario and the worst case scenario
This information can help hospitals and medical teams improve how they prepare and support patients and families before and after surgery.
Keywords
To assess patient and caregiver perspectives on pre-surgical education and discharge planning in head and neck cancer (HNC) surgery and identify recommendations for improving surgical care delivery. Participants provided five recommendations: (1) improve communication about anticipated side effects; (2) provide targeted education through multiple modalities; (3) connect patients and caregivers with individuals who have gone through HNC surgery; (4) improve patient-provider communication for individuals with speech, vision, and hearing impairment; and (5) present the best and worst case scenarios to prepare individuals for post-surgical recovery. Study findings identify recommendations for improving pre-surgical education and discharge planning for HNC surgery, which can inform intervention development in the future. Context Summary
Key Objective
Knowledge Generated
Relevance
Introduction
In 2018, head and neck cancer (HNC) accounted for approximately 890 000 new cancer cases and 450 000 deaths worldwide, making it the 7th most common cancer globally. 1 The American Cancer Society estimates that there will be 67 000 new cases of HNC in the U.S. in 2023. 2 Although surgery remains an essential and life-saving treatment option for individuals with HNC, surgery is associated with significant morbidity.3-8 Because of the location, HNC surgical procedures are often invasive, and can include reconstructive surgery, such as moving tissue from one part of the body to another (ie, free flap surgery), or removal of organs that affect breathing and speech (eg, laryngectomy). 9 As a result, HNC surgery is associated with distressing side effects, including impaired sensory functions, difficulty swallowing and communicating, changes in body image and social interactions, disfigurement, and psychological distress.3,10-13 HNC treatment can also lead to financial hardship due to the cost of treatment and the negative impact on patients’ ability to work.14,15 Despite the complex recovery from HNC surgery, few studies have examined interventions to improve HNC patients' preparedness for surgery and surgical recovery.
Pre-surgical education and discharge planning interventions have been shown to improve patient and healthcare system outcomes but have been understudied in HNC surgery.16-19 Pre-surgical education and discharge planning programs can improve patient outcomes, such as knowledge, self-efficacy, satisfaction with care, quality of life, anxiety, and distress, and healthcare outcomes, such as hospital readmissions.16-19 Qualitative studies suggest that there may be key elements of pre-surgical education and discharge planning programs that patients find particularly helpful, such as having the opportunity to connect with patient advocates who have gone through a similar surgery, and. integrating informal caregivers into program delivery.20,21 To design such a program for HNC surgery patients, additional research is needed to identify unmet needs for HNC patients and their caregivers.
To address this gap, this qualitative study aims to (1) assess patient and caregiver perspectives on pre-surgical education and discharge planning in HNC surgery and (2) determine how current practices can be improved to better meet the needs of HNC patients and their caregivers. The research was conducted in a National Cancer Institute (NCI)-designated Comprehensive Cancer Center and a community oncology clinic with a high volume of HNC patients. The findings from this study have the potential to inform the development of programs and policies aimed at optimizing pre-surgical preparation and postoperative planning for individuals diagnosed with HNC and their caregivers.
Methods and Materials
The study was conducted in two healthcare settings: an NCI-designated Comprehensive Cancer Center and a community oncology clinic affiliated with a large nonprofit healthcare system. The target population comprised individuals who had been diagnosed with HNC and undergone major HNC surgery, such as laryngectomy or free flap reconstruction, within the past three months, and informal caregivers (eg, spouse, friend) when available. Research staff recruited individuals by approaching eligible patients during post-surgical outpatient visits and then asking patients to identify a caregiver (if a caregiver was available). Patients could also participate alone if a caregiver was unavailable. Recruitment continued until thematic saturation was achieved, meaning no new themes emerged from the interviews.
Data Collection
Data were collected using a semi-structured interview guide developed by the research team based on a literature review of common concerns among HNC surgical patients and their caregivers (Supplemental File). 22 The guide covered common concerns such as, nutrition, functional impairment, and overall quality of life. The guide also included specific questions tailored to major HNC surgeries such as laryngectomy (eg, stoma care) and free flap reconstruction (eg, wound healing). Thirty minute, one-time interviews were conducted by a female, PhD-trained qualitative research specialist (KT) who worked at [name of institution] at the time of the study. The interviewer was a cancer care researcher without direct experience as a HNC patient or caregiver. To minimize potential bias in interpreting study findings, member checking was done. 23 Key themes were shared back with participants to ensure the study team’s interpretation of the study findings was consistent with participants’ experience. Participants agreed with the key themes presented in the study. Interviews were held via Zoom videoconference in September and October of 2021. Participants provided verbal consent at the time of the interview for interview participation and for interview recording. To accommodate participants with speech impairments, the option to use the Zoom chat feature was provided for participants who had difficulty answering questions verbally during the interview.
Data Analyses
The interviews were recorded, transcribed verbatim, de-identified, and integrated into NVivo 12 (QSR International). The study team developed a codebook, which included deductive codes derived from the topics in the interview guide. Two transcripts were randomly selected and coded using directed-content analysis by two independent coders. 24 The coders met to reconcile coding differences, discuss additional inductive codes to capture emerging themes from the data, and to revise the codebook and decision rules for applying codes. The coders then coded a second set of transcripts (n = 5) independently, and met to compare coding differences, come to a consensus on coding discrepancies, and further refined the codebook and decision rules. The remaining transcripts were coded independently, and the coders used the same process of meeting to reconcile differences and to come to a consensus on coding for all transcripts. The findings of the study are reported in accordance with the Consolidated Criteria for Reporting Qualitative Studies (COREQ) checklist. 25 The study protocol was reviewed by Moffitt Cancer Center’s Institutional Review Board of Record, Advarra, and exempted from IRB oversight on December 23, 2020 (IRB # 00000971). Participants received a $50 gift card for interview completion.
Results
Participant Characteristics
Participant Characteristics, N = 23.
Themes and Illustrative Quotations.
Improve Communication About Anticipated Side Effects
“The swallowing was kind of a shock. I didn’t think swallowing would be as hard.” – Patient with laryngectomy
Patients and caregivers frequently described receiving inadequate information about anticipated side effects, such as losing sense of taste and smell, difficulty with swallowing and eating, disfigurement and scaring, and financial hardship. Participants described, in some instances, that anticipated side effects were mentioned (eg, appearance of a scar) but that participants were not prepared for the severity (eg, length of scar, number of scars). Participants also described instances when certain side effects, such as limited range of motion, loss of taste and smell, and financial hardship, were not discussed at all. For example, one participant recalled being blindsided by the number of bills received and the number of additional expenses that were not anticipated (eg, supplies and equipment required during recovery). There were also a few participants who stated that they could not remember whether side effects were discussed because they were overloaded by all of the information that was presented about the surgery. Some participants found it easy to get in touch with the care team about side effects from surgery after hospital discharge while others described difficulty with finding the right contact on the care team or having to call the nursing station multiple times due to long wait times. Participants recommended having a list of anticipated side effects and guidance on when and how to contact the care team.
Provide Targeted Education through Multiple Modalities
“I wish there would have been videos I could show my other family members. I felt like I was re-teaching everyone everything constantly.” – Caregiver for patient with laryngectomy
Patients and caregivers recalled receiving a lot of written information about HNC surgery and recovery, watching videos during hospitalization, and receiving verbal instructions from the care team. Most participants found it helpful to receive verbal instructions first and then to receive the written materials as a reference for what was discussed. Some participants found that written materials—the volume, length, and technical language—were overwhelming and described not reading the materials because they did not know what information should be prioritized. Participants recommended receiving videos in addition to written materials that were accessible after the hospitalization. Participants described watching a video while the patient was hospitalized and not having access to the video after the patient was discharged. Participants thought a website or housing the videos on the patient portal would be valuable. Caregivers thought videos would be especially helpful for training other caregivers (eg, other family members or friends) on how to care for the patient so the caregiver did not have to keep retraining others. Participants also described watching videos that were not relevant to their surgery and recommended ensuring that educational materials are targeted to the specific surgery (eg, having a laryngectomy-specific video for laryngectomy patients).
Connect Patients and Caregivers With Other Individuals who have gone through HNC surgery
“I think a support group would have been really helpful. I wish I could have talked to other people taking care of someone who had a laryngectomy.” – Caregiver for patient with laryngectomy
Patients and caregivers thought it would be helpful to hear firsthand experiences from other patients with HNC receiving surgery and their caregivers. One participant described watching YouTube videos of other patients with HNC who had received a laryngectomy to better understand what to expect after surgery. Other participants suggested support groups and other tools (eg, Facebook group) to connect with patients and caregivers with similar experiences. Participants thought it would be helpful to have access to these resources before surgery to understand what to expect and how to prepare for recovery and after surgery to learn best practices and coping mechanisms. Compared to these resources, participants felt that written materials or guidance from the care team offered less preparation for patients, especially on how much their life was going to change.
Improve Patient-Provider Communication for Individuals with Speech, Vision, and Hearing Impairment
“I’m like ‘please don’t hang up. I’m not a robot’.” – Patient with laryngectomy
Participants with speech, vision, and/or hearing impairment described challenges with communicating with the care team. For example, one patient described pressing the call button to alert the care team he needed help and having the nurses repeatedly ask ‘hello’ because they had forgotten he was not able to speak. Another participant who had a laryngectomy recalled calling the hospital and having staff hang up on him multiple times because they thought he was a ‘robot’. Participants recommended having alternative methods of communication for patients with speech impairment and educating staff on how speech may sound with an electrolarynx. Patients with vision impairment described receiving small print materials and being unable to read them. One participant asked for large print materials and was told that the clinic did not have any. Participants with hearing impairment reported challenges with getting the clinic team to speak up and look at patients while they were talking with them during clinic visits. One caregiver recalled asking a provider to speak up and more clearly because her husband had hearing impairment. She described that the provider kept forgetting and she felt uncomfortable reminding him. As a consequence, her husband was unable to hear the post-discharge instructions that were provided and his wife had to re-explain everything to him after the care team left the room. Participants recommended that providers look at patients while they are speaking with them, ensure they are speaking clearly and loud enough to be heard (eg, not mumbling), and make a note in the patients’ room or chart to remind them that the patient has hearing impairment.
Present the Best- and Worst-Case Scenario
“I think our surgeon wanted to keep our spirits up but he didn’t prepare us for the possibility that the surgery wouldn’t work and that more surgeries would be needed. I would have liked to know what is the worst possible outcome at the beginning so I could have been prepared for the long road ahead.” – Patient with free flap reconstruction
Participants described receiving a mix of information from providers on their post-operative recovery and follow-up treatment. Some participants felt that their providers presented an overly optimistic view (ie, the best-case scenario) of their post-operative recovery causing the patient to feel shocked and unprepared when things were worse than initially anticipated. Some participants described that their providers focused on the worst-case scenario, which was discouraging, and when things turned out much better than anticipated, they felt they experienced unnecessary distress. Participants recommend that providers present the best-case and worst-case scenario, so the patient and caregiver are adequately prepared for what to expect after surgery.
Discussion
This qualitative study assessed patients’ and caregivers’ perspectives about gaps in HNC pre-surgical education and discharge planning care delivery. Participants provided key recommendations that centered around communication about side effects and post-surgical recovery (i.e., ensuring best and worst case scenario is provided), ensuring information is provided in multiple formats and is accessible to individuals with speech, hearing, or vision impairment, and creating ways for patients and caregivers to connect with other individuals who have gone through the HNC surgery experience.
Participants suggested that, prior to surgery, patients and their caregivers should be provided a comprehensive list of anticipated side effects, a list of appropriate healthcare team members with a guide on when to contact them, and access to support groups, which have been shown to improve quality of life in similar settings.26,27 To better disseminate this information, participants suggested the use of a centralized website, which could serve as a hub for these resources, enhancing the patient’s operation and recovery, and ensuring that multiple modalities were used to deliver information (eg, written information and videos). Prior studies have found that the use of technology, such as video games or virtual reality, has been shown to improve patient knowledge and understanding about other complex treatments (e.g., radiation therapy).28-32 Future studies could explore similar technologies for HNC pre-surgery education.
Participants described not receiving adequate information on the potential financial hardship associated with HNC surgery (e.g., inability to go back to work, out-of-pocket medical care costs) prior to surgery. Future studies are needed to test strategies for addressing financial hardship, such as financial counseling.10,33-36 Future studies are also needed to test strategies for addressing other social needs (e.g., food insecurity) that may affect surgery preparedness and recovery. 37
After surgery, participants described inadequate symptom mangement and monitoring. Prior studies have tested electronic patient-reported outcome monitoring (PROM) systems to allow surgical patients to report side effects.38-41 In a randomized control trial, Pusic et al. found that the use of PROM systems after surgery, may reduce anxiety and nursing workload. 42 There are several PROMs specific to HNC (e.g., LARY-Q) that could be used to monitor symptoms among HNC patients receiving surgery. 43
Study participants also highlighted the unique challenges that individuals receiving HNC surgery may experience if they also have vision, speech, and/or hearing impairment, particularly when the impairment was caused by the surgery (i.e., a new disability). Future research is needed to test technologies, such as speech-generating devices (SGDs), that could also bridge communication gaps. These devices have been shown to be beneficial for patients who are unable to develop a functional long-term speech method, such as after total laryngectomy with total glossectomy.44,45
Participants also wanted a more comprehensive discussion of all possible outcomes after surgery (i.e., best case/worst case scenario). Previous research has pilot tested and demonstrated the feasibility and acceptability of the Best Case/Worst Case (BC/WC) communication tool to better prepare patients and caregivers for possible outcomes associated with complex treatment delivery (e.g., delivering chemotherapy to older adults with cancer).46-48 Future studies could pilot test the feasibility and acceptability of using a similar BC/WC tool to prepare HNC patients and their families for HNC surgery.46-48
Similarly, future studies are needed to test strategies for enhancing patient-centered communication or ensuring that communication is aligned with the needs, values, and preferences of patients. 49 Prior studies have tested approaches such as communication training with HNC surgical trainees and found that training can be an effective method for improving patient-centered communication. 50 Future studies should conduct a needs analysis among medical students and trainees to identify potential training needs related to adequately communicating with patients and families about HNC surgery and recovery. Other strategies that have been recommended but require additional testing are (1) making surgical consent forms more patient-friendly (eg, including easy-to-understand visuals); and (2) providing patients with a treatment journey map to help them understand the sequence of their treatment and expected recovery. 51
Limitations
The study has several limitations. First, the study was conducted at an NCI-designated Comprehensive Cancer Center and a high-volume community oncology center; therefore, the findings may not be generalizable to other healthcare settings. Second, the primary goal of this study was to assess patients’ and caregivers’ perspectives on pre-surgical education and discharge planning. Additional studies have been conducted to summarize healthcare professionals’ perspectives. 52 Given the purpose of the study was to qualitatively explore caregiver and patient perspectives, the sample size is intentionally small and was designed to achieve thematic saturation. Future quantitative studies are needed that capture perspectives of a larger number of patients and caregivers across diverse settings. Lastly, the data were collected in 2021, and the landscape of HNC care may have evolved since then, potentially affecting the current relevance or applicability of the findings.
Conclusion
This study offers recommendations for improving HNC pre-surgical education and discharge planning for patients and caregivers. The findings highlight gaps in surgical care delivery including providing information about potential side effects, setting appropriate expectations for post-surgical recovery, ensuring communication methods are accessible to individuals who may have speech, vision, or hearing impairment, and fostering connections among patients and families who have gone through HNC surgery. Future studies are needed to test interventions that address these potential gaps in HNC surgery delivery.
Supplemental Material
Supplemental Material - Patients’ and Caregivers’ Experiences With Pre-Surgical Education and Discharge Planning for Head and Neck Cancer: A Qualitative Study
Supplemental Material for Patients’ and Caregivers’ Experiences With Pre-Surgical Education and Discharge Planning for Head and Neck Cancer: A Qualitative Study by Ameer Basta, BS, Marian Mikhael, BS, Bhargav Kansara, BS, Emma Hume, MPH, Oliver T. Nguyen, MSHI, Maija Reblin, PhD, Amir Alishahi Tabriz, MD, PhD, Young-Rock Hong, PhD, MPH, J. Scott Magnuson, MD, FACS, Krupal Patel, MD, MSc, FACS, and Kea Turner, PhD, MPH, MA in Cancer Control
Footnotes
Statements and Declarations
Author Contributions
Funding
The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research was supported in part by the Participant Research, Interventions, and Measurements Core at the H. Lee Moffitt Cancer Center & Research Institute, an NCI designated Comprehensive Cancer Center (P30-CA076292).
Conflicting interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Data Availability Statement
To protect the privacy of the individuals that participated in this study, the individual-level data underlying this article including protected health information cannot be shared. Summary-level data may be requested.
Supplemental Material
Supplemental material for this article is available online.
References
Supplementary Material
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