Meeting breast cancer patients' information needs during radiotherapy: what can we do to improve the information and support that is currently provided?

Previous research has reported that patients require specific information relating to radiotherapy; however, these studies fail to describe patients' specific information needs over time. The aims of this study were to determine the specific information needs of breast cancer patients who are receiving radiotherapy and identify when patients prefer to receive specific information. Semi-structured interviews were conducted with 34 early breast cancer patients and 14 health professionals. Seventeen patients were interviewed after treatment completion, and 17 patients were interviewed on at least two occasions during their radiotherapy. Grounded theory and the constant comparative method were used to analyse the data. Three main categories emerged from the data: 'repertoire of information', 'amount of information relating specifically to radiotherapy' and'tailoring information to match patients' radiotherapy journeys'. Patients' information needs were identified, and key messages and strategies to inform patients were described. This paper identifies breast cancer patient's specific information needs during radiotherapy and shows that patients' information needs are highest during their first appointment with their radiation oncologist and at the time of their planning appointment. The findings presented will enable health professionals to develop and refine their approaches to patient education in radiotherapy.

Assessment of quality of life in lymphedema patients: validity and reliability of the Swedish version of the Lymphedema Quality of Life Inventory (LQOLI).

The Lymphedema Quality of Life Inventory (LQOLI) is an instrument developed for patients with different types of lymphedema. It contains physical, emotional, social, and practical dimensions and consists of 58 items, each with three sub items concerning life quality, daily life changes, and difficulties of changing and two items concerning life quality in general and in relation to lymphedema. The purpose of this study was to adapt the Australian LQOLI to Swedish conditions and to test it for clarity, face validity, content validity, construct validity, and reliability. Content and face validity was completed by experts (n=11) and patients with different types of lymphedema (n=16). For construct validation the SF-36 (n=63) was used. Test-retest reliability was evaluated with lymphedema patients (n=58) answering the questionnaire twice, within median 3 weeks. Three items were added in the Swedish version of LQOLI (SLQOLI). The kappa coefficients in test-retest for all items and sub items varied (range = 0.25-0.83). Construct validity showed moderate correlation with SF-36. The SLQOLI is adapted and valid, with moderate reliability, and it can be used in clinic to describe life quality for patients with lymphedema. In this study, 67% of the patients experienced an effect on life quality within the physical dimension and 54-58% within the emotional, social, and practical dimensions.

The supportive and palliative care needs of Australian families of children who die from cancer.

OBJECTIVE: To identify the perceptions of parents of children who died from cancer regarding the palliative and supportive care they received in hospital and in community settings. METHOD: Face-to-face or telephone questionnaires. Setting Tertiary paediatric oncology centres in Western Australia, New South Wales, Queensland and Victoria. PARTICIPANTS: 69 parents. RESULTS: Parents indicated the need for clear and honest information about their child's condition and prognosis throughout the trajectory of illness. Parents also required access to, and advice from, multidisciplinary health professionals when caring for their child at home. Parents preferred to care for their child at home wherever possible throughout the palliative care trajectory of their child's cancer and were well supported by immediate and extended family and friends. However, many families were affected emotionally and financially by the burden of caring for their child with incurable cancer. Families required financial and practical assistance with providing care from their child. Parents wanted and needed more practical resources and information to assist with the management of their child's nutrition and pain, as well as for the support of their other children. CONCLUSION: Care for children and their families should be coordinated by a multidisciplinary team in consultation with children and their families, and should be linked and integrated with the treating hospital in collaboration with community services.

Palliative respite services using nursing staff reduces hospitalization of patients and improves acceptance among carers.

People caring for palliative patients at home identify respite care as a key need. However, caregiver concern over the skill level of respite care providers has been cited as a common barrier to uptake and satisfaction with respite services. This study implemented and evaluated an at-home palliative care respite service delivered by enrolled nurses, known by various names in the UK. It was found that the program reduced hospitalizations of palliative patients by 80% and potentially increased the likelihood that they would die at home.

Translating theory into practice: using Action Research to introduce a coordinated approach to emotional care.

OBJECTIVE: This paper describes a translational project that explored the feasibility and effect of introducing a coordinated approach to emotional care. METHODS: The project was undertaken using Action Research on one ward at St John of God Hospital Subiaco, Western Australia. A senior Registered Nurse was appointed to provide the leadership and direction to staff regarding emotional care and an education program for staff was provided. The project was evaluated using both quantitative and qualitative data. RESULTS: Data demonstrated an increase in the patient's evaluation of emotional care, although levels were found to fluctuate throughout the project. Factors such as the emotional distress of the staff were hypothesised as impacting on the delivery of emotional care. CONCLUSION: The approach used in this project was found to be a useful method of improving emotional care. However, the data collected in this study revealed the complexity of emotional care delivery and the possible impact of a number of factors within the environment. PRACTICE IMPLICATIONS: Emotional care delivery can be improved by using a coordinated research-based educational approach led by a clinical champion. However, the impact of other factors within the hospital environment needs to be considered and more research is required.

A qualitative investigation of the palliative care needs of terminally ill people who live alone.

This paper investigates the support needs of people living alone with a terminal illness from a client perspective. In depth, interviews were conducted with 11 clients from Silver Chain Hospice Care in Western Australia to capture their personal experiences of managing at home alone and to assess their physical, social and emotional needs. Findings provided useful insights with respect to many of the motivations, beliefs and wishes of individuals who endeavour to cope on their own with minimal assistance. The needs of these individuals are practical, emotional, physical and existential. At the heart of these concerns is a strong need to be independent and maintain a sense of dignity at end of life.

The effect of self-selected complementary therapies on cancer patients' quality of life and symptom distress: A prospective cohort study in an integrative oncology setting.

OBJECTIVE: To examine the effectiveness of a multifaceted complementary therapies intervention, delivered in a systematic manner within an Australian public hospital setting, on quality of life and symptom distress outcomes for cancer patients. METHODS: Adults receiving treatment for any form of cancer were eligible to participate in this study. Self-referred participants were offered a course of six complementary therapy sessions. Measures were administered at baseline, and at the third and sixth visit. The primary outcomes were quality of life and symptom distress. Linear mixed models were used to assess change in the primary outcomes. RESULTS: In total, 1376 cancer patients participated in this study. The linear mixed models demonstrated that there were significant improvements in quality of life and significant reductions in symptom distress over six sessions. Body-based therapies demonstrated significantly superior improvement in quality of life over counselling, but no other differences between therapies were identified. Reduced symptom distress was not significantly associated with any particular type of therapy. CONCLUSION: A self-selected complementary therapies intervention, provided in an Australian public hospital by accredited therapists, for cancer patients significantly mproved quality of life and reduced symptom distress. The effect of this intervention on quality of life has particular salience, since cancer impacts on many areas of people's lives and impairs quality of life.

Adverse effects to quality of life arising from treatment can recover with intermittent androgen suppression in men with prostate cancer.

Health-related quality of life (HQOL) research is a means of broadening the assessment of treatment effects. This longitudinal study investigated the dynamic change to quality of life (QOL) and testosterone dependant physiology in men commencing an intermittent maximal androgen blockade program (IMAB). Two hundred and fifty men were accrued to the multi-centre study of IMAB (Flutamide 250 mg TDS, Leuprolide 22.5 mg depot) ceasing treatment after 9 months if PSA <4 ng/ml, and restarting when PSA >20 ng/ml. QOL was assessed every 3 months for 30 months using the EORTC QLQ-C30 and EORTC QLQ-PR25 module. Data completion for the whole study was 90%. At baseline, our cohort was less symptomatic and had better function than the EORTC reference cohort, which may be related to a shift in clinical practice with time. Testosterone suppression (AS) lead to a significant reduction in global HQOL and deterioration in most function and symptom scales. During the off period, there was a trend of progressive improvement in HQOL that paralleled testosterone recovery but was slower than the rate of deterioration during the treatment phase. Maximum recovery of HQOL occurred most frequently by months 9-12. Testosterone recovery was slower and less complete in older men, and lead to concomitant poorer HOQL recovery. Whilst the magnitude of mean change to scale scores was small, there was a consistent and simultaneous deterioration during maximal androgen blockade (MAB) and improvement during androgen recovery. Older men are more likely to show an impaired testosterone recovery, and this was paralleled by a slower HQOL recovery. Newer methods of analysis to describe results in a way that has meaning to the individual patient are warranted.

Critical review of complementary therapies in haemato-oncology.

There is evidence of the increasing use of complementary and alternative medicine by Australians diagnosed with cancer. Given the increasing desire of cancer patients to use complementary and alternative medicine, it is important that clinicians have a good understanding of the evidence available in this field. This critical review aims to provide an overview of the current evidence pertaining to a range of complementary therapies that are used in a supportive role in the treatment of cancer patients. Treatment methods considered are acupuncture, music therapy, massage and touch therapies and psychological interventions. The efficacy of these complementary therapies in terms of improvement in symptoms and quality of life is examined. Evidence that relates to an effect on immune function and survival is also investigated.

Perceptions of symptom distress in lung cancer patients: II. Behavioral assessment by primary family caregivers.

Literature on assessment of symptom distress has focused primarily on patients' and nurses' perceptions in the hospital setting. To date, no research has examined behavioral measurement and cues that primary family caregivers respond to when assessing patients' level of distress arising from individual symptoms in the home setting. The qualitative data obtained from 37 primary family caregivers of patients with lung cancer was designed to augment quantitative results discussed elsewhere. Content analysis was performed on written responses to an open-ended questionnaire in which family caregivers identified cues that they responded to when assessing patients' distress from symptom items. The results identified the categories of impaired functioning and verbal cues as the most frequent indices of symptom distress. This study documents that certain behavioral measures for assessing symptom distress may be clinically useful to observers. Primary family caregivers are shown in this study to take a limited multidimensional approach in the assessment of patients' distress from symptoms.

Psychosocial issues in palliative care: the patient, the family, and the process and outcome of care.

This article presents a synopsis of the psychosocial needs of patients and families in the terminal phase of malignant disease, as well as approaches to auditing the care of these clients. Recommendations for future research from the National Cancer Institute of Canada Workshop on Symptom Control and Supportive Care in Patients with Advanced Cancer are presented. These include recommendations on the need for more effective tools to measure the symptoms and burden of illness; an improved taxonomy to describe terminal illness; and studies to (1) measure the impact of interventions for improved symptom relief on the psychosocial distress of patients and families, (2) determine the impact of psychosocial interventions on the symptomatology associated with terminal illness, (3) operationalize "good palliative care" and the optimal delivery of palliative care, (4) assess the auditing of palliative care, (5) develop family typologies of adaptation to terminal illness, (6) describe high risk families, and (7) measure the impact of staff support programs on improving patient/family care.

Dyspnea in cancer patients: prevalence and associated factors.

The objectives of this study were to determine the prevalence of dyspnea in the general cancer population, the intensity of the symptom as perceived by the patient, and the patient characteristics associated with the presence of dyspnea. Nine hundred and twenty-three cancer outpatients completed visual analogue scales (VAS) and verbal rating scales (VRS-D) to assess the intensity of their dyspnea. Baseline data included variables that were known covariates of dyspnea. Forty-six percent of the patients had some shortness of breath. Only 4% had a diagnosis of lung cancer and 5.4% lung metastases. Risk factors found to be significantly related to the presence of dyspnea were history of smoking; asthma or chronic obstructive pulmonary disease (COPD); lung irradiation; or a history of exposure to asbestos, coal dust, cotton dust or grain dust (P values from 0.001 to 0.038). The prevalence of dyspnea was strongly related to the number of risk factors a patient had (P < 0.0001). The VAS and VRS-D were significantly correlated, establishing concurrent validity for the VRS-D.

Perceptions of symptom distress in lung cancer patients: I. Congruence between patients and primary family caregivers.

Part I of this two-part paper employs a comparative design to compare primary family caregivers' assessments of lung cancer patients' symptom distress with patients' own perceptions of symptom distress in the home setting. Part II describes the results of the qualitative component of this research. A convenience sample of 37 patient-family caregiver dyads completed the McCorkle and Young Symptom Distress Scale (SDS). Family caregivers' global scores were moderately correlated with patients' global scores (r = 0.71; P < 0.001). No significant differences in ratings were found for ten of the 13 symptoms assessed. Therefore, when the patient is unable to provide a self-report of symptom distress, health-care professionals may seriously consider family caregivers' assessments of patients' symptom distress to be reasonable estimates for at least ten of the 13 symptoms on the SDS.

Validity and reliability testing of the FAMCARE Scale: measuring family satisfaction with advanced cancer care.

The purpose of the study was to test the validity and reliability of the FAMCARE Scale which was developed to measure family satisfaction with advanced cancer care. The FAMCARE Scale was developed based upon earlier qualitative research which identified indicators of family care satisfaction and a subsequent Q-sort study that reduced those items to the most salient indicators of satisfaction according to a larger, representative sample (N = 210). A pilot test of the FAMCARE Scale using a convenience sample of 30 family members of advanced cancer patients was conducted. The scale achieved internal consistency estimates of 0.93 at two testing times, a test-retest correlation of 0.91, and estimates of criterion validity using the McCusker Scale of 0.80 and 0.77. Cluster analysis of the scale suggested 4 subdimensions. Although the scale requires further testing to establish its reliability and validity, these preliminary results indicate that the scale may be a psychometrically sound instrument useful for measurement of family satisfaction with advanced cancer care.

Beyond convention: describing complementary therapy use by women living with breast cancer.

Using a descriptive survey design, 52 women living with breast cancer were interviewed to explore their use of complementary therapy and the relationships between complementary therapy use and key demographic variables and health beliefs. Sixty-seven percent of the women reported complementary therapy use, with meditation/relaxation therapies, vitamins and spiritual healing being the three most frequently reported treatments. Women using complementary therapies were more likely to have completed post-secondary education than women using only conventional medical treatment (chi 2 = 7.1, P = 0.008). Preferred decisional role was found to be significantly associated with the use of complementary therapies (chi 2 = 11.7, P = 0.003); women using complementary therapies preferred a more active/collaborative role in treatment decisions than women using only conventional medical treatment. No significant associations were found between complementary therapy use and beliefs about cause of cancer, treatments, satisfaction with health care providers, and perceived quality of life. The findings point to the pervasiveness of complementary therapy use by women living with breast cancer and contradict past research which has supported a distinct demographic profile of complementary therapy users and associated belief system.

Writing therapy for the bereaved: evaluation of an intervention.

Bereavement is a risk factor for a wide range of well-documented negative outcomes. As such, a range of sensitive and appropriate interventions are needed to support people adjusting to their new roles and change in identity. Writing has proven to be useful for people adjusting to traumatic experiences. Translating experiences into language and constructing a coherent narrative of the event enables thoughts and feelings to be integrated, leading to a sense of resolution and less negative feelings associated with the experience. Using a writing therapy intervention tailored specifically for bereaved individuals in Western Australia, this study asked: "Does a writing therapy intervention reduce grief, lead to greater health and wellbeing and lead to greater self care for bereaved individuals?" The results indicate that for grief and General Health Questionnaire-30 (GHQ-30) scores there was an overall improvement for all participants regardless of whether participants received the intervention or not. The results for the effect of writing therapy on self-care demonstrate that there is a greater increase in self-care for the intervention group than for the control group; however, this trend does not reach statistical significance. Writing therapy offers a useful, cost-effective, and private way of supporting bereaved individuals who may not practice self-care. The main limitation of the current research is the low number of participants, which limits the generalizability of the results. Future research could be directed toward evaluating the intervention for recently bereaved people or those identified by screening as being particularly vulnerable.

Performance status assessment in home hospice patients using a modified form of the Karnofsky Performance Status Scale.

The Karnofsky Performance Status (KPS) scale is considered to be the gold standard for quantifying the physical functioning of patients with cancer. However, problems have been identified with the scoring system when the scale is used in the home hospice setting. The goal of this study was to compare assessments of performance status using two instruments, the KPS and a modified version, the Thorne-KPS (TKPS). The TKPS avoids reference to location of care and has new descriptors for assessing the frequency of professional visits and the proportion of time spent in bed. Comparisons were made on a sample of 78 home-hospice patients in Perth, Western Australia. The median score for both scales was 60. The scales agreed in 56% of ratings overall but after correcting for chance, agreement was reduced to 47%. However, 91% of the 34 discrepancies occurred within one or two levels of the 11-point scale. TKPS scores were consistently lower than KPS scores and were spread over a wider range of the scale. The strongest agreement occurred at the higher levels of performance and the weakest agreement was within the middle levels of the scales. Further studies are required to determine which of the two scales more accurately reflects performance status and survival time. However, the results to date suggest that the TKPS may be a more objective and sensitive measure of functional performance in home hospice patients.

The family's cancer journey: a literature review.

Cancer is recognized by health professionals as a phenomenon experienced by the entire family, not just by the individual member diagnosed with the disease. This article is based on an examination of approximately 200 clinical papers and research studies written between 1970 and 1991. Four major dimensions of the family cancer experience were identified from the literature: developmental stage of the family, cancer illness trajectory, family responses to cancer, and health care provider behaviors. The most developed body of literature documents the family responses to cancer and health-care provider behaviors directed at these responses. Gaps in research knowledge are identified and directions and recommendations for future research are outlined.

Psychological support role of night nursing staff on an acute care oncology unit. A Canadian pilot study.

Observational field techniques were used to explore the dimensions of psychological support provided by experienced night nursing staff on an acute oncology unit in a Canadian tertiary care setting. This study confirms the findings of an earlier British pilot study surrounding the essential role that nurses play in meeting the psychosocial needs of cancer patients during the night shift on oncology wards. Categories included comfort care, monitoring, facilitating patient control, responding to the family, collegial support, and contextual factors. The findings confirm the need to raise the awareness of other health care professionals regarding the psychological support role night nurses undertake.

Priorities for adult cancer nursing research: a West Australian replication.

Two Delphi surveys have been conducted during the past 20 years to identify cancer nursing research priorities; one in the United States and one in Canada. Sir Charles Gairdner Hospital, the State Cancer Referral Centre in Western Australia, undertook a replication of this Delphi survey to identify nursing research priorities for adult cancer nursing. The aim of this replication was to identify possible changes in priorities and account for cultural difference in the healthcare systems. A total of 45 responses were received from the first Delphi round and 30 from the second. The top ten priorities identified by this sample were different from those identified in prior studies. The top ranked research topic was "What strategies would be most helpful in allowing nurses time to provide emotional support to cancer patients and carers?" These results may stimulate discussion and re-assessment of research priorities in other adult cancer care settings.