Sara Faithfull

Supportive care needs of men living with prostate cancer in England: a survey

Men with prostate cancer have various treatment options depending upon their stage of disease, age and presence of comorbidity. However, these treatments typically induce side effects, which generate currently ill-defined supportive care needs. This study examined the supportive care needs of men with prostate cancer within England. A postal questionnaire survey was conducted in six acute NHS Trusts. Seven hundred and forty-one men with prostate cancer participated. They had been diagnosed 3–24 months prior to the survey and had received various treatments. Men surveyed had specific and significant unmet supportive care needs. Areas of greatest need are related to psychological distress, sexuality-related issues and management of enduring lower urinary tract symptoms. High levels of psychological distress were reported, and those reporting psychological distress reported greater unmet supportive care needs. Unmet sexuality-related need was highest in younger men following radical prostatectomy. Lower urinary tract symptoms were almost universal in the sample. Perceived quality of life varied; men unsure of their remission status reported lowest quality of life. Psychological distress impacts significantly on perceived unmet need and is currently not being assessed or managed well in men living with prostate cancer in England.

Evaluation of nurse-led follow up for patients undergoing pelvic radiotherapy

This study reports results from a randomised controlled trial of nurse-led care and was designed to determine whether nurse-led follow up improved patients morbidity and satisfaction with care in men treated with radical radiotherapy for prostate and bladder cancer. The aim was to compare outcomes in terms of toxicity, symptoms experienced, quality of life, satisfaction with care and health care costs, between those receiving nurse-led care and a group receiving standard care. The study population was of men prescribed radical radiotherapy (greater than 60 Gy). Participants completed self-assessment questionnaires for symptoms and quality of life within the first week of radiotherapy treatment, at week 3, 6 and 12 weeks from start of radiotherapy. Satisfaction with clinical care was also assessed at 12 weeks post-treatment. Observer-rated RTOG toxicity scores were recorded pre-treatment, weeks 1, 3, 6 and 12 weeks from start of radiotherapy. The results presented in this paper are on 115 of 132 (87%) of eligible men who agreed to enter the randomised trial. 6 men (4%) refused and 11 (8%) were missed for inclusion in the study. Data were analysed as a comparison at cross-sectional time points and as a general linear model using multiple regression. There was no significant difference in maximum symptom scores over the time of the trial between nurse-led follow-up care and conventional medical care. Differences were seen in scores in the initial self assessment of symptoms (week 1) that may have been as a result of early nursing intervention. Those men who had received nurse-led care were significantly more satisfied (P < 0.002) at 12 weeks and valued the continuity of the service provided. There were also significant (P < 0.001) cost benefits, with a 31% reduction in costs with nurse-led, compared to medically led care. Evidence from this study suggests that a specialist nurse is able to provide safe follow up for men undergoing radiotherapy. The intervention focused on coping with symptoms, and provided continuity of care and telephone support. Further work is required to improve the management of patients during and after radiotherapy.

Palliative care of patients with a primary malignant brain tumour: case review of service use and support provided

Individuals with a primary malignant brain tumour require intensive palliative care services because of the symptoms and cognitive problems they experience. Many of these patients stay with their families at home, being supported by palliative care home teams rather than being admitted for hospice care. The provision of respite care and community services to support these families goes largely unreported. This study arises out of a need to review support services for patients and carers within one cancer and palliative care service. This retrospective case analysis identifies that there are a range of services used in the community to support patients with primary malignant brain tumours but that only a small proportion receive inpatient hospice care. District nursing services were extensively used but also a high number (74%) of patients were admitted to local hospitals for symptom management. This paper attempts to explore the services utilized but also questions the apparently limited provision of hospice care for supporting individuals in the palliative care stages of such an illness. This paper considers the illness trajectory, the complex symptoms experienced by patients and respite services utilized. Issues of those engaged in informal care giving and in the provision of support for those with a primary malignant glioma are also considered.

Self-management for men surviving prostate cancer: a review of behavioural and psychosocial interventions to understand what strategies can work, for whom and in what circumstances

Objective: In the context of increasing prostate cancer survivorship, evidence of unmet supportive care needs and growing economic health‐care restraints, this review examined and evaluated best approaches for developing self‐management programmes to meet mens survivorship needs.

Nurse led telephone follow up in ovarian cancer: A psychosocial perspective

Survivorship is a relatively new concept in ovarian cancer due to improvements in diagnosis, surgery and chemotherapy. As more women require long term follow up for ovarian cancer the pressure on these services is increased and the question of how best to care for these women needs to be addressed. This paper considers the results of a pilot study of nurse led telephone follow up in ovarian cancer from a psychosocial perspective. Fifty-two women received telephone follow up over a 10-month period; one aspect of this intervention was the opportunity for women to discuss psychosocial concerns with the clinical nurse specialist. A nurse database held records of patient discussions, and patient feedback regarding the service was collected using FACT Ovarian quality of life questionnaire, plus the satisfaction and experience with follow up questionnaire. Thirty-three women were recorded as discussing psychological concerns with the nurse, 42% discussed feelings of anxiety or depression and 33% discussed fear of disease recurrence. Thirty-nine women were recorded as having discussed social concerns with the nurse, 56% discussed their family (husband, children, etc.), 51% discussed work and/or finances, and 41% discussed sexual intimacy. The majority of women (73%) expressed a preference for nurse led telephone follow up, the main advantages were reported as the relationship and discussions between the patient and the nurse, and the convenience of having follow up appointments over the phone instead of attending clinic. This pilot study suggests that nurse led telephone follow up offers an acceptable opportunity for psychosocial support for women with ovarian cancer.

Malignant fungating wounds: a survey of nurses' clinical practice in Switzerland.

BACKGROUND The care of individuals with a fungating malignant wound represents challenging cancer management not only for patients and their families but also for health care professionals. Understanding the difficulties faced by nurses when they care for patients with such a wound can help guide practice and service development. The aim of this study was to investigate how many patients with a malignant fungating wounds did nurses see and what kind of difficulties in caring for patients with a malignant fungating wound did nurses experience. METHOD A survey was conducted in three different geographical regions of Switzerland over a 6month period. RESULTS A total of 269 nurses participated in this survey. The nurses reported the prevalence rate of fungating wounds as 6.6%. There was a difference in perceived prevalence between the regions. The most frequent location for such wounds was the breast in women with breast cancer. The appearance was mainly ulcerating. The main difficulties nurses experienced in the management of patients related to malodour, pain and difficulties in applying the dressings to the wound. The most frequently used dressing was an absorbent dressing. The difficulties nurses had and what kind of dressings they used were closely connected. CONCLUSIONS AND IMPLICATIONS FOR PRACTICE Strategies need to be explored to help understand the diverse range of wound problems including physical and psychological components. Furthermore, there is a need to raise the awareness of existing wound management specialists in the support of cancer patients.

Malignant fungating wounds – The meaning of living in an unbounded body

BACKGROUND Malignant fungating wounds may have significant physiological, psychological and emotional consequences on patients and their families. This study focuses on understanding the lived experiences of patients with a malignant fungating breast wound and their informal carers. METHOD The methodological framework of interpretative phenomenological approach according to Heidegger was used. Nine patients were interviewed from January until November 2009. RESULTS The results demonstrate that most of the patients and their informal carers were on their own while struggling with the erosion of their physical boundaries. The women report a lack of information and advice about how to manage the wound as well as the physical and social limitations imposed on them because of copious wound exudate, odour and bleeding. The women used many different methods and approaches to maintain the boundedness of the body. CONCLUSION This study contributes to understanding that losing control over the body meant for the women losing control over themselves and their lives. The unboundedness was demonstrated through the symptom experiences. Therefore the care of women needs strategies that are integrated in a palliative, holistic, empathic approach. In particular skills for palliative wound care among medical and nursing staff need to be developed as the women and their carers report a lack of information and advice about how to manage the wound as well as the physical limitations and psychosocial consequences of struggling to maintain the boundedness of the body.

The impact of supportive nursing care on the needs of men with prostate cancer: a study across seven European countries.

Background:Prostate cancer is for many men a chronic disease with a long life expectancy after treatment. The impact of prostate cancer therapy on men has been well defined, however, explanation of the consequences of cancer treatment has not been modelled against the wider variables of long-term health-care provision. The aim of this study was to explore the parameters of unmet supportive care needs in men with prostate cancer in relation to the experience of nursing care.Methods:A survey was conducted among a volunteer sample of 1001 men with prostate cancer living in seven European countries.Results:At the time of the survey, 81% of the men had some unmet supportive care needs including psychological, sexual and health system and information needs. Logistic regression indicated that lack of post-treatment nursing care significantly predicted unmet need. Critically, men’s contact with nurses and/or receipt of advice and support from nurses, for several different aspects of nursing care significantly had an impact on men’s outcomes.Conclusion:Unmet need is related not only to disease and treatment factors but is also associated with the supportive care men received. Imperative to improving men’s treatment outcomes is to also consider the access to nursing and the components of supportive care provided, especially after therapy.

Assessment of treatment-induced female sexual morbidity in oncology: is this a part of routine medical follow-up after radical pelvic radiotherapy?

Background:Oncology follow-up has traditionally prioritised disease surveillance and the assessment and management of symptoms associated with cancer and its treatment. Over the past decade, the focus on late effects of treatment has increased, particularly those that have an adverse effect on long-term function and quality of life. The aim of this research was to explore factors that influence the identification of treatment-induced female sexual difficulties in routine oncology follow-up after radical pelvic radiotherapy.Methods:A structured observation schedule was used to systematically record topics discussed in 69 radiotherapy follow-up consultations observed over a 5-month period.Results:Analysis suggests that physical toxicity assessment focused on bowel (81%) and bladder (70%) symptoms. Vaginal toxicity was discussed less frequently (42%) and sexual issues were explored in only 25% of consultations. Formal recording of radiation toxicity through assessment questionnaires was limited to patients participating in clinical trials. Surveillance activity and the management of active physical symptoms predominated and psychosocial issues were addressed in only 42% of consultations.Interpretation:Female sexual morbidity after pelvic radiotherapy remains a neglected aspect of routine follow-up and cancer survivorship. Developments in both individual practice and service provision are necessary if the identification and management of treatment-induced female sexual difficulties is to be improved.

Integrated care: Utilisation of complementary and alternative medicine within a conventional cancer treatment centre

OBJECTIVES To estimate the proportion of cancer outpatients who visit a Complementary and Alternative Medicine (CAM) unit that is located within a conventional cancer treatment centre; to compare the characteristics of CAM unit visitors with those of all outpatients; to monitor the demand for 20 CAM therapies delivered by professionals, and the use of the CAM unit for waiting, gathering information and informal support from volunteer staff. DESIGN Prospective, observational, over a six month period. SETTING CAM unit within a NHS cancer treatment centre. MAIN OUTCOME MEASURES Utilisation of the CAM unit for 20 complementary therapies, and for waiting, gathering information, informal support; characteristics of CAM users compared with those of all cancer outpatients attending the cancer centre; predictors of CAM therapy use and frequent use. RESULTS 761 (95% of those approached) people were recruited, 498 (65.4%) cancer patients, 202 (26.5%) relatives, 37 (4.8%) friends/carers, 24 (3.2%) staff. Women predominated (n=560, 73.6%). Of all outpatients attending the cancer centre, 498 (15.8%) visited the CAM unit, 290 (9.2%) accessed therapies. Compared to all outpatients, those visiting the CAM unit were: younger (mean 63.7 vs. 58.4 years), more likely to be female (57.9% vs. 78.7%), have breast (14.8% vs. 51.9%), gynaecological (5.0% vs. 9.1%) cancer, live in local postal district (57.3% vs. 61.6%). Significant predictors of therapy use and frequent visits were being a patient, female, higher education, living closer to the cancer centre. CONCLUSIONS Despite easy access to CAM therapies, a relatively small number of people regularly used them, whilst a larger number selectively tried a few. The integrated CAM unit meets a demand for information and informal support. The findings inform emerging policy on integrating CAM and conventional cancer treatment to address psychosocial needs of people with cancer. More research is needed on why people do not use integrated CAM services and how charges affect demand.