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.

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.

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.

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.

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 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.