Social challenges of cancer patients with orbitofacial disfigurement.

PURPOSE: Patients who undergo orbital exenteration often experience social problems because of their facial disfigurement. The authors studied the interaction of cancer patients who had undergone orbital exenteration with family members and friends (primary groups) and with acquaintances and strangers (secondary groups) in small and large groups. METHODS: In-depth telephone interviews were conducted with 12 patients treated at a cancer center (7 men and 5 women aged 51-81 years) and 12 family members (8 spouses and 4 children or siblings). Three patients had adenoid cystic carcinoma of lacrimal gland, 3 had squamous cell carcinoma of conjunctiva/eyelid, and 1 each had conjunctival melanoma, eyelid sebaceous gland carcinoma, transitional cell carcinoma of lacrimal sac, adenocarcinoma of orbit, neuroendocrine carcinoma of orbit, and basal cell carcinoma of eyelid. Time from orbital exenteration to interview ranged from 8 months to 36 years (median, 44 months). RESULTS: Two patient groups were identified according to comfort in interactions with acquaintances and strangers. Always comfortable patients were always at ease. Occasionally comfortable patients were at ease in large groups in situations of "benign neglect" and in small groups when they received "sympathy"; were uncomfortable in large and small groups when episodes of "intrusion" occurred; and had mixed responses to benign neglect in small groups and sympathy in large groups. Both patient groups felt comfortable with family members and friends. CONCLUSIONS: Patients who will undergo orbital exenteration should be warned about possible difficulties with social interactions. Healthcare personnel should be trained to help patients and family members prepare for such difficulties.

Surgical facial cancer treatment: the silencing of disfigurement in nurse-patient interactions.

TITLE: Surgical facial cancer treatment: the silencing of disfigurement in nurse-patient interactions. AIM: The aim of this study was to explore and explain how disfigurement is addressed in interactions between patient and nurse during the period in hospital immediately after undergoing disfiguring facial surgery. BACKGROUND: Facial disfigurement as a result of head and neck or eye cancer surgery is associated with psychosocial problems; however no successful intervention program has been developed. Empirically derived knowledge about what goes on in the patient-nurse interaction is missing. METHOD: A grounded theory design was used, with data derived from audio-recorded conversations between and individual interviews with 14 patients and their connected nurses, from three participating university hospitals. Data were collected in 2007. FINDINGS: A substantive model with silencing disfigurement as a core category was developed. The model included three categories; minimizing disfigurement, disfigurement is a luxurious problem and another time, another place. A condition of implicit and unverified professional assumptions about addressing the issue of disfigurement became an underlying character. Without this the core category could not exist. CONCLUSION: The model elucidates a silencing process maintained by preconceived assumptions which need to be challenged to help patients adjust to their changed appearance after facial cancer treatment.

Treatment of primary intraocular melanoma.

The treatment of intraocular melanoma has evolved recently. Enucleation has been superseded largely by brachytherapy, proton beam radiotherapy, stereotactic irradiation, trans-scleral local resection, transretinal resection and diode laser phototherapy. Many patients develop metastatic disease, which usually involves the liver and occurs hematogenously. Disseminated disease rarely responds to therapy, and is usually fatal within 1 year of the onset of symptoms. Uveal melanomas develop characteristic chromosomal abnormalities, such as loss of chromosome 3. This is associated with a reduction in the 5-year survival from approximately 95% to less than 50%.

The patient's role in the decision-making process--a perspective from the Liverpool Ocular Oncology Centre.

PURPOSE: To examine the patient's role in the decision-making process in a tertiary adult ocular oncology service. METHODS: A prospective study was carried out of patients attending for follow-up at the Liverpool ocular oncology centre (LOOC), a tertiary adult ocular oncology service. Participants were patients who attended the clinic between September and October 2003. Through supervised completion of questionnaires, the main factors observed were: patients' preferred level of participation, patients' perceived level of participation, sources of information used by patients, and which sources they found most useful. RESULTS: In all, 39 patients were included in the study. The majority of patients (69.2%) would have preferred to make a shared decision with the doctor (10.3% preferring an active role, 20.5% preferring a passive role), while 48.7% perceived having had a shared role (25.6% felt they had had an active role, 25.6% a passive one). Outside the LOOC, general ophthalmologists were the most frequently cited source of information from health professionals, and were also scored as the most useful. Family and friends were the most common source of informal information, followed by use of the Internet. Tape recordings of the consultations were reported as the most popular resource provided by the LOOC. CONCLUSIONS: Patients attending the LOOC have a strong desire for involvement in the decision-making process. Patients receive little formal or informal information outside this tertiary centre. Further work is required to assess the effectiveness of physicians' communication skills and the influence of their recommendations on patient choice.

Long-term follow-up of children with retinoblastoma.

Twenty-one pediatric retinoblastoma (RB) patients treated between 1976 and 1994 were evaluated for late treatment-related complications. Median age at diagnosis was 24 months; median age at follow-up was 12 years; median follow-up time was 12 years. Of the 21 patients, 14 had unilateral RB and 7 had bilateral RB. Thirteen patients had received external radiotherapy and 8 children were treated by chemotherapy. Twenty-one patients had undergone enucleation. Radiation-induced cataracts were found in 3 patients, radiation retinopathy in 1, enucleation and postradiotherapy contracted socket in 1, very low visual acuity postradiotherapy in 3, severe hypotelorism in 2, growth hormone deficiency in 2, neurocognitive disorders in 6, and orbital deformation due to radiation bone atrophy was moderate-severe in 12 patients. Azoospermia was found in 1 patient treated by cyclophosphamide and vincristine. The most frequent sequela in this group of RB-cured children were postradiotherapy orbital deformation due to bone atrophy and neurocognitive disabilities. Late radiation effects must be avoided by using modern, innovative, and more sophisticated radiotherapeutic techniques. Late treatment-related complications justify the long-term follow-up of childhood RB survivors.

Taping outpatient consultations: a survey of attitudes and responses of adult patients with ocular malignancy.

PURPOSE: To study the attitudes and responses of cancer patients to audiotaped consultations as a communication aid in an ophthalmic clinic. METHODS: Ninety-four patients attending an ocular oncology clinic were given an audiotape of their initial consultation. They were then administered a structured interview with questionnaire regarding their views on the tape when they attended an outpatient clinic for follow-up after surgery or radiotherapy. RESULTS: 91% of patients had listened to the tape at least once, often prior to their treatment or follow-up visit. Most patients had shared the tape with immediate relatives, including their spouse (58%) or other family members (45%). Of those who had listened to the tape, 94% described it as very useful or quite useful in helping them understand their condition. The majority had found it valuable in helping them understand their treatment and its side-effects, in reducing their fears and anxieties and in their emotional and psychological adjustment to their illness. Most commented on the tape as a valuable communication aid to the consultation process. CONCLUSIONS: Taping of the consultation as a method of improving communication is popular among cancer patients. The vast majority benefit greatly from being able to hear their consultation again in their own time.

The power of humor and play as nursing interventions for a child with cancer: a case report.

Many benefits of humor and play have been documented in the literature. The purpose of this Case Report was to assess the benefits of humor and play with a 5-year-old retinoblastoma patient in an ambulatory care setting. The use of humor in the forms of tickling, joke-telling, play on words, funny movies, silly stickers, and medical play was found to be helpful in decreasing the anxiety of a pediatric oncology patient during insertion of his Infusaport needle. This article reviews the benefits of humor and play and provides a brief discussion of the developmental aspects of humor and play theory. Implications for further nursing research in the area of humor interventions are also discussed. The promotion of appropriate humor and play use by all health care professionals is encouraged.

Identifying the nonmedical concerns of patients with ocular melanoma.

1. The task of enhancing patients' quality of life begins with identifying their needs and concerns. This process requires a knowledge base of the needs, problems, and barriers patients face as they struggle with the physical, psychological, and social sequelae of cancer. 2. To enhance knowledge of the psychosocial consequences of ocular melanoma and to facilitate supportive care planning, a study was initiated to identify patients' needs arising from the symptom management and nonmedical concerns of these patients, barriers to resolving these needs, and patients' service preferences. 3. The results indicate that the expressed needs inventory and the scales measuring unexpressed needs represent a valid and reliable approach to needs assessment, and that this approach is able to identify the needs resulting from patients' symptom management and nonmedical concerns.

Mutual support for families of children with eye cancer.

For parents to be told that their child has been diagnosed as having retinoblastoma is totally devastating. Retinoblastoma is a cancerous condition of the eye which occurs mostly in children, usually before the age of 3 years. To be confronted with the problem of sight loss and cancer is a tremendous shock. In appreciation of this, the staff of Moorfields Eye Hospital in London were well aware of the need and desire of parents to form a self-help group for mutual support during this traumatic period in parents' lives. The purpose of this article is to discuss the importance of forming a self-help group for families with children affected by retinoblastoma and to describe how the Retinoblastoma Society was established.

When consent is unbearable: an alternative case analysis.

Dr Agich takes up a previous difficult case related by Dr Kottow in an earlier issue of the Journal. He analyses the three ethical problems as presented in the case and offers his own opinion of it as well as his own conclusions with regard to the medical ethical aspects of it. Unlike Dr Kottow, Dr Agich's reading of the case indicates that the application of the principle of informed consent does not rule out ethical decisions for the physician, but emphasizes the relevance of ethical analysis beyond the issue of informed consent.