Communication of prognosis in head and neck cancer patients; a descriptive qualitative analysis.

OBJECTIVES: In shared decision making it is important to adequately, timely and actively involve patients in treatment decisions. Sharing prognostic information can be of key importance. This study describes whether and how prognostic information on life expectancy is included during communication on diagnosis and treatment plans between physicians and head and neck (H&N) oncologic patients in different phases of disease. METHODS: A descriptive, qualitative study was performed of n = 23 audiotaped physician-patient conversations in which both palliative and curative treatment options were discussed and questions on prognosis were expected. Verbatim transcribed consultations were systematically analyzed. A distinction was made between prognostic information that was provided (a) quantitatively: by giving numerical probability estimates, such as percentages or years or (b) qualitatively: through the use of words such as 'most likely' or 'highly improbable'. RESULTS: In all consultations, H&N surgeons provided some prognostic information. In 5.9% of the provided prognostic information, a quantitative method was used. In 94.1% prognostic information was provided qualitatively, using six identified approaches. H&N surgeons possibly affect patients' perception of prognostic content with two identified communication styles: directive (more physician-centered) and affective (more patient-centered). CONCLUSION: This study is first in providing examples of how H&N surgeons communicate with their patients regarding prognosis in all stages of disease. They often exclude specific prognostic information. The study outcomes can be used as a first step in developing a guideline for sharing prognostic information in H&N oncologic patients, in order enable the process of shared decision making.

Experience of palliative care for patients with head and neck cancer through the eyes of next of kin: impact of an Expert Center.

BACKGROUND: Literature is scarce on the palliative care experiences of patients with head and neck cancer. We report our experience in this patient population after the establishment of our Expert Center. METHODS: We administered a questionnaire to 40 surviving relatives of patients with head and neck cancer after the establishment of our Expert Center and compared the results to a similar group of patients with head and neck cancer before the establishment of our Expert Center. RESULTS: Since the establishment of our Expert Center, we found: an improved evaluation of the psychosocial support offered; better contact between head and neck surgeons, the patients, and families; and improvement in the quantity of information in the palliative phase. Some relatives, however, reported that patients received treatment against their wishes and life was not made as comfortable as possible. CONCLUSION: Important aspects of palliative care, such as psychosocial support and contact between patient and surgeon, have been improved since the establishment of our Expert Center.

Symptoms of patients with incurable head and neck cancer: prevalence and impact on daily functioning.

BACKGROUND: There is lack of research on symptoms in patients with head and neck cancer in the palliative phase. The aim of this study was to explore symptom prevalence and the impact of these symptoms on daily functioning in patients with incurable head and neck cancer. Also, discrepancies between patients and family caregivers are described. METHODS: Questionnaires were used to collect data about symptom prevalence (n = 124) and symptom impact (n = 24). RESULTS: We discovered that the symptoms with a high prevalence were fatigue, pain, weakness, trouble with short walks outside, and dysphagia. The symptoms with the greatest impact on daily functioning were dyspnea, voice changes, trouble with short walks outside, anger, and weakness. CONCLUSIONS: Patients with incurable head and neck cancer experience a great number of different symptoms. Focus on these symptoms by health care professionals could further optimize symptom management. In future research, we recommend further validation of the used questionnaires.

Recordings of consultations are beneficial in the transition from curative to palliative cancer care: a pilot-study in patients with oesophageal or head and neck cancer.

PURPOSE: There is reluctance in providing incurable cancer patients with recordings of their consultation. In this pilot-study, we explored the feasibility and utility of providing consultation recordings when patients are told a new diagnosis of non-curable cancer, and the impact of the recordings on quality of life and the openness to discuss cancer-related issues in the family. METHOD: Seventeen patients with a new diagnosis of incurable oesophageal or head and neck cancer were randomized to receive a CD (n = 10) or no CD (n = 7) of their consultation in which the diagnosis was told and the decision to provide only palliative care was discussed. Data were collected before consultation and 1 week and 1 month afterwards. After 1 month, patients allocated to the control group were offered to receiving the CD of their consultation as well. RESULTS: No major technical or procedural problems were encountered. Three-quarters of the patients appreciated receiving the CD, which was listened to by 8/10 patients and by 10/10 others in the CD group. After 1 month, two-thirds of the patients in the control group also asked to receive the CD. We found a trend towards a poorer quality of life but an improved openness to discuss cancer-related issues, in the CD group. CONCLUSION: The provision of a CD recording on the consultation in which the transition from a curative to a palliative care stage was communicated is feasible and was well-received by most cancer patients and their family. These findings require however verification in a study with a larger sample size.

Survival of patients with palliative head and neck cancer.

BACKGROUND: The purpose of this study was to describe patient characteristics and prognostic factors for survival in the palliative stage of patients with head and neck cancer. METHODS: Since November 2003, all patients with palliative head and neck cancer treated in our hospital have been recorded in a central database. In total, 262 deceased patients were included in this retrospective study. RESULTS: The reasons for palliation were inoperability, distant metastases, refusal of curative treatment, or poor condition. The mean palliative phase lasted 5.3 months for patients with squamous cell carcinomas. Involvement of a specialized nurse was significantly related with the number of admissions and place of dying. Multivariate analysis showed comorbidity and treatment to be independent predictors of survival in the palliative phase. CONCLUSION: Comorbidity and palliative interventions are possible prognostic factors for survival. The involvement of a specialized nurse might be associated with an improved quality of life.

Goal processes & self-efficacy related to psychological distress in head & neck cancer patients and their partners.

UNLABELLED: PURPOSE AND OBJECTIVE OF THE RESEARCH: In this cross-sectional study we used a self-regulation perspective to better understand the experience of psychological distress in head & neck (H&N) cancer patients and their partners. We examined which goals they valued and the extent to which patients and partners experience goal disturbance. Furthermore, associations were explored between goal disturbance, goal re-engagement, (goal)self-efficacy, and psychological distress. METHODS AND SAMPLE: H&N cancer patients and their partners, recruited from the Erasmus Medical Center Rotterdam (N = 40), were interviewed and completed questionnaires, assessing the above aspects of the self-regulation theory. KEY RESULTS: H&N cancer patients and their partners experienced goal disturbance from the disease. Such disturbances were in patients significantly related to more psychological distress. Higher levels of goal re-engagement were related to less psychological distress, again only significantly in patients. More self-efficacy was significantly associated with less psychological distress in both patients and partners. CONCLUSIONS: Self-regulation abilities as goal re-engagement and self-efficacy may be screened and used as target in future psychological interventions, given their potential to decrease perceived psychological distress. In view of elevated levels of goal disturbances in partners, psychological support for caring relatives in such interventions is recommended.

Early hyperbaric oxygen therapy for reducing radiotherapy side effects: early results of a randomized trial in oropharyngeal and nasopharyngeal cancer.

PURPOSE: Comparison of quality of life (QoL) and side effects in a randomized trial for early hyperbaric oxygen therapy (HBOT) after radiotherapy (RT). METHODS AND MATERIALS: From 2006, 19 patients with tumor originating from the tonsillar fossa and/or soft palate (15), base of tongue (1), and nasopharynx (3) were randomized to receive HBOT or not. HBOT consisted of 30 sessions at 2.5 ATA (15 msw) with oxygen breathing for 90 min daily, 5 days per week, applied shortly after the RT treatment was completed. As of 2005, all patients received validated questionnaires (i.e., the European Organization for Research and Treatment of Cancer [EORTC] QLQ-C30, EORTC QLQ Head and Neck Cancer Module (H&N35), Performance Status Scale): before treatment; at the start of RT treatment; after 46 Gy; at the end of RT treatment; and 2, 4, and 6 weeks and 3, 6, 12, and 18 months after follow-up. RESULTS: On all QoL items, better scores were obtained in patients treated with hyperbaric oxygen. The difference between HBOT vs. non-HBOT was significant for all parameters: EORTC H&N35 Swallowing (p = 0.011), EORTC H&N35 Dry Mouth (p = 0.009), EORTC H&N35, Sticky Saliva (p = 0.01), PSS Eating in Public (p = 0.027), and Pain in Mouth (visual analogue scale; p < 0.0001). CONCLUSIONS: Patients randomized for receiving hyperbaric oxygen after the RT had better QoL scores for swallowing, sticky saliva, xerostomia, and pain in mouth.

Experience of palliative care for patients with head and neck cancer through the eyes of next of kin.

BACKGROUND: Little is known about how palliative care is experienced by patients with head and neck cancer and their relatives. The aim of this retrospective study was to analyze this care from the point of view of surviving relatives. METHODS: Fifty-five surviving relatives of patients with head and neck cancer treated at our department were enrolled in this study. Forty-five returned a completed questionnaire. RESULTS: Medical treatment during the palliative stage was judged as sufficient in most cases, but was often felt to be intrusive. The majority of patients had more need for psychosocial and physical support. Contact between head and neck surgeon and patient was sufficient. Many relatives found information about the terminal stage unsatisfactory. CONCLUSION: Not all aspects of palliative care for head and neck patients are sufficient, and improvements are, in our setting, necessary, specifically within the psychosocial field. This supports the initiation of our Expert Center to improve quality of life in the palliative stage.

Impact on quality of life of a telemedicine system supporting head and neck cancer patients: a controlled trial during the postoperative period at home.

OBJECTIVES: Telemedicine applications carry the potential to enhance the quality of life of patients, but studies evaluating telemedicine applications are still scarce. The evidence regarding the effectiveness of telemedicine is limited and not yet conclusive. This study investigated whether telemedicine could be beneficial to the quality of life of cancer patients. DESIGN AND MEASUREMENTS: Between 1999 and 2002, we conducted a prospective controlled trial evaluating the effects of a telemedicine application on the quality of life of patients with cancer involving the head and neck, using quality of life questionnaires that covered 22 quality of life parameters. All patients had undergone surgery for head and neck cancer at the Erasmus MC, a tertiary university hospital in The Netherlands. Patients in the intervention group were given access to an electronic health information support system for a period of six weeks, starting at discharge from the hospital. RESULTS: In total, we included 145 patients in the control group and 39 in the intervention group. At 6 weeks, the end of the intervention, the intervention group had significantly improved QoL in 5 of the 22 studied parameters. Only one of these five quality of life parameters remained significantly different at 12 weeks. CONCLUSIONS: This study adds to the sparse evidence that telemedicine may be beneficial for the quality of life of cancer patients.

Palliative care for head and neck cancer patients in general practice.

CONCLUSION: The findings of this study justify the goals of the Expert Centre such as the improvement of somatic and psychosocial care and consultation. OBJECTIVE: A recent review showed that little attention is paid to palliative care for head and neck patients. The Erasmus MC has initiated an Expert Centre of Palliative Care Head and Neck Oncology with special interest in patient care, consultation and research. In this study the experience of general practitioners (GPs) in their care of palliative head and neck cancer patients before the start of the Expert Centre is assessed. The aim of the study was to find possible gaps in care and communication and to use GP's ideas to improve the centre's functioning. MATERIALS AND METHODS: Fifty-five GPs with a patient in their practice who died from head and neck cancer between January 2003 and July 2004 after being treated in the Erasmus MC were included. The GPs were asked to fill out a questionnaire regarding their experience in the care of palliative head and neck cancer patients, the communication between first- and third-line care providers and the work of both the GP and the specialist involved. RESULTS: The response rate was 75%. The palliative stage lasted approximately 4 months. The GPs felt that symptom control was generally not sufficient. Also improvements were necessary in psychosocial care and in the communication between first- and third-line care providers. They also experienced gaps in their knowledge of specific head and neck oncologic palliative care.

Compliance and efficiency before and after implementation of a clinical practice guideline for laryngeal carcinomas.

We evaluated whether the implementation of a nationwide clinical practice guideline for diagnosis, treatment and follow-up of laryngeal carcinomas led to changes in hospital costs, balanced against clinical changes observed following the guideline's implementation. Charts of 822 patients with larynx carcinoma (459 treated before the introduction of the guideline and 363 thereafter) in five hospitals were retrospectively investigated. In all phases, no differences in total hospital costs were observed after the guideline's implementation. Total mean costs were Euro 3,207 (95%CI 3,091-3,395) for diagnosis, Euro 3,169 (2,153-4,182), Euro 5,026 (3,996-6,057), Euro 6,458 (5,579-7,337), Euro 8,037 (7,469-8,606), Euro 12,765 (10,763-14,769), Euro 19,227 (16,848-21,605) for treatment of dysplasia, carcinoma in situ, T1, T2, T3 and T4 carcinoma, respectively, and Euro 1,856 (1,491-2,220) for 1 year disease-free follow-up. In an earlier study, we observed several positive changes after the guideline's implementation. Balanced against the equal costs before and after the guideline's implementation, we conclude that the efficiency of the care process improved.

Quality of life during the first 3 months following discharge after surgery for head and neck cancer: prospective evaluation.

OBJECTIVE: To identify patient groups that are prone to poorer quality of life (QoL) during the first 3 months following discharge from the hospital after surgery for head and neck cancer. DESIGN: Prospective evaluation of the QoL of surgically treated head and neck cancer patients measured with questionnaires at discharge and at 6 weeks and 3 months after discharge. SETTING: Department of Otolaryngology and Head and Neck Surgery of the Erasmus University Medical Centre, a tertiary health care centre in Rotterdam, The Netherlands. PARTICIPANTS: Ninety head and neck cancer patients who had undergone a total laryngectomy, neck dissection, or the commando procedure. MAIN OUTCOME MEASURES: Patients' quality of life in 22 different dimensions. RESULTS: Three patient characteristics associated with poorer QoL during the first 3 months following discharge from the hospital after surgery for head and neck cancer: laryngectomy, lower levels of education, and being single. QoL already improved in eight QoL dimensions during the first 3 months after discharge, but QoL in the dimensions "loss of control" and "physical self-efficacy" worsened during this same period. CONCLUSIONS: It is possible to identify patient groups that are prone to poorer QoL during the first 3 months following discharge from the hospital after surgery for head and neck cancer. The results of this study may help care providers working with head and neck cancer patients to tailor their rehabilitation programs.

Involving the patient: a prospective study on use, appreciation and effectiveness of an information system in head and neck cancer care.

OBJECTIVE: To determine use, appreciation and effectiveness of an electronic health information support system in head and neck (H&N) cancer care. DESIGN: A prospective evaluation study. The evaluated system has four different functions: (1) communication amongst health care providers and between health care providers and patients, (2) information for health care providers and patients, (3) contact with fellow sufferers and (4) monitoring of discharged patients by means of electronic questionnaires. Evaluation of the system was done both objectively using automatically created log files and stored messages, and subjectively by using paper questionnaires from patients and general practitioners (GPs). SETTING: Department of Otorhinolaryngology and Head and Neck Surgery of a tertiary health care centre in the Netherlands. The system was put at patients' disposal for a period of 6 weeks following discharge from the hospital after surgery for H&N cancer, and was additional to standard care. PARTICIPANTS: Head and neck cancer patients, hospital physicians, members of a hospital-based support team, GPs, district nurses and speech therapists. MAIN OUTCOME MEASURES: Actual use of the system by patients and health care providers. Patients' appreciation for each of the system's four different functions. GPs' appreciation for the system. Capability to detect potential patient problems with the system. RESULTS: The system was used by 36 H&N cancer patients, 10 hospital physicians, 2 members of the support team, 8 GPs, 2 district nurses and 2 speech therapists. The total number of patient-sessions was 982: an average of 27.3 sessions per patient during the 6 weeks study period. In total, 456 monitoring questionnaires were completed. The support team in hospital responded with 231 actions. In 16 cases, an extra appointment was made for a patient with the hospital physician. Out of these cases, immediate action was considered necessary eight times. Patients appreciated the system highly, rating it with an average score of 8.0 on a 10-point scale. All patients used the monitoring function, and rated 'monitoring' with a mean score of 8.0 on a 10-point scale. Least used and appreciated was the 'contact with fellow sufferers' function. Only 8 out of possible 36 GPs used the system, rating it with an average of 5.6 on a 10-point scale. CONCLUSIONS: The electronic health information support system was used intensively and highly appreciated by H&N cancer patients. The system enabled the early detection of occurring health problems that required direct intervention. ICT can play an additional role in the management of patients, also in a relatively elderly and computer illiterate patient population.

Evaluating adherence to the Dutch guideline for diagnosis, treatment and follow-up of laryngeal carcinomas.

BACKGROUND AND PURPOSE: An evidence-based clinical practice guideline for laryngeal carcinomas was introduced in the Netherlands late 1999. The objective of this guideline was to ensure uniformity in the diagnosis, treatment, and follow-up. We retrospectively evaluated whether clinical practice changed according to the recommendations of this guideline and whether it succeeded in its aim. MATERIAL AND METHODS: In five out of eight Dutch university hospitals, chart data of 459 patients treated before the guideline introduction were compared to data of 363 patients treated after the guideline introduction. RESULTS: Patient and tumour characteristics were comparable among both groups. In general, the guideline recommendations were properly complied with. The patients treated before the guideline introduction were actually also for a large part already treated according to the guideline's recommendations. After its introduction, several changes according to the guideline were observed: increased rates of reassessment of biopsy samples taken in local hospitals, psychological screening (although still only performed in 10.5% of patients), application of accelerated radiotherapy schedules, clinical trial treatments, function-preserving treatments, and decreased rates of total laryngectomy, and annual chest X-rays during follow-up. CONCLUSIONS: Although a causal relationship cannot be established in this kind of observational studies, several positive changes were observed after the introduction of the guideline, and therefore the guideline seems to have contributed to more uniformity. The largest changes were seen for the guideline recommendations based on the highest levels of evidence.

On the enhancement of efficiency in care for cancer patients in outpatient clinics: an instrument to accelerate psychosocial screening and referral.

Many cancer patients experience psychosocial problems that go unnoticed by caregivers. To improve this situation, an instrument has been developed and tested to identify such problems. This instrument, the integral checklist, was put to the test in two outpatient departments of different hospitals with an intervention and a control group (105 and 124 patients, respectively). To evaluate the efficiency of the checklist, both groups had to complete a questionnaire after consultation. Results showed that the checklist assisted specialists to be more often pro-active in discussing psychosocial problems with their patients, and more patients with psychosocial problems were referred. Most of the patients appreciated going through the checklist with their specialist. The checklist proves to fit in well with hospital routines and using it costs the specialist no extra time. It appears to be an instrument which improves efficiency of consultation. Moreover, the checklist is turned out to be useful as a management tool to divert patients' attention away from the waiting time.

An extra letter, care gets better? Informing general practitioners about planned surgery for head and neck cancer.

OBJECTIVE: To investigate how general practitioners (GPs) value an additional letter from the hospital. This so-called preadmission letter informs the GP about planned surgery for head and neck cancer in one of their patients. DESIGN: Prospective survey among GPs by means of a questionnaire attached to the preadmission letter. SETTING: Department of Otolaryngology and Head and Neck Surgery of a tertiary care centre in the Netherlands and 104 different GPs in primary care. PARTICIPANTS: All GPs of patients undergoing surgery for head and neck cancer received the preadmission letter during a 1-year study period. MAIN OUTCOME MEASURES: GPs' appreciation of the received preadmission letter, GPs' opinion on the content of the preadmission letter, and GPs' general opinion on information provided by our hospital. RESULTS: Of the 145 preadmission letters sent during the study year, 115 questionnaires were returned (response rate of 79%). All GPs positively appreciated receiving the preadmission letter and considered its content relevant. They valued the letter, with a mean mark of 8.3 on a 10-point scale. The majority of the GPs agreed that the preadmission letter allows them to provide better care. CONCLUSIONS: GPs highly appreciate an extra letter informing them about intended surgery for head and neck cancer in one of their patients. Despite the basic content of the preadmission letter (five items only), the majority of GPs consider the information sufficient. The results of this study have led to the implementation of the preadmission letter to GPs of head and neck cancer patients on a permanent basis in our institution.

An information system to support the care for head and neck cancer patients.

The potential of Information and communication technology (ICT) as a method to improve care is widely acknowledged. However, before ICT can be used in a specific patient population, the needs of that population must first be made explicit. In this paper we aim to explore the feasibility and functionality of an electronic information system to support head and neck (H&N) cancer care. We describe communication and information bottlenecks in supportive care for H&N cancer patients. These bottlenecks were used to determine the functionality of an electronic health information support system. We discern three perspectives of problems in H&N cancer care: lacking communication among professionals, lacking information about the disease and its treatment, and lacking supportive measures to reduce uncertainty and fear in patients. To support care, an information support system can facilitate (1). communication among all professionals involved and between professionals and patients, (2). professionals' and patients' access to information, (3). contact with fellow sufferers, and (4). early detection of patient problems by means of monitoring. Based on these analyses we subsequently built such a system and established a setting for evaluation. Information and communication technology can be tailored to address the communication and information bottlenecks in supportive H&N cancer care. As we aim to investigate whether care for H&N cancer patients may benefit from ICT, we are currently performing a clinical evaluation study.