Can specially trained community care workers effectively support patients and their families in the home setting at the end of life?

Surveys indicate that many Australians would prefer to die at home, but relatively few do. Recognising that patients and their families may not have the support they need to enable end‐of‐life care at home, a consortium of care providers developed, and received funding to trial, the Palliative Care Home Support Program (PCHSP) across seven health districts in New South Wales, Australia. The programme aimed to supplement end‐of‐life care in the home provided by existing multidisciplinary community palliative care teams, with specialist supportive community care workers (CCWs). An evaluation of the service was undertaken, focussing on the self‐reported impact of the service on family carers (FCs), with triangulation of findings from community palliative care teams and CCWs. Service evaluation data were obtained through postal surveys and/or qualitative interviews with FCs, community palliative care teams and CCWs. FCs also reported the experience of their loved one based on 10 items drawn from the Quality of Death and Dying Questionnaire (QODD). Thematic analysis of surveys and interviews found that the support provided by CCWs was valued by FCs for: enabling choice (i.e. to realise end‐of‐life care in the home); providing practical assistance (“hands‐on”); and for emotional support and reassurance. This was corroborated by community palliative care teams and CCWs. Responses by FCs on the QODD items indicated that in the last week of life, effective control of symptoms was occurring and quality of life was being maintained. This study suggests that satisfactory outcomes for patients and their families who wish to have end‐of‐life care in the home can be enabled with the additional support of specially trained CCWs. A notable benefit of the PCHSP model, which provided specific palliative care vocational training to an existing community care workforce, was a relatively rapid increase in the palliative care workforce across the state.     

Economic evaluations of occupational therapy approaches for people with cognitive and/or functional decline: A systematic review

With the ageing of the world's population comes significant implications for nearly all sectors of society, including health and aged care spending. Health and aged care systems need to respond to the increasing need for services for older people. Occupational therapy is concerned with maintaining a person's functional independence and well‐being from preventative and treatment perspectives. The aim of this systematic review was to identify the costs and outcomes of occupational therapy for people with cognitive and/or functional decline. The searches for this review were conducted on 23 September 2016 and updated on 20 April 2017. Full economic evaluation studies, partial economic evaluations, randomised trials reporting estimates of resource use or costs associated with intervention(s) and comparator(s) and studies with pre‐ and post‐intervention cost comparators were included. Thirteen studies met the inclusion criteria. The type and duration of occupational therapy intervention in the included studies varied, ranging from one‐off assessments through to systematic multicomponent programmes. Results suggested that structured occupational therapy interventions which comprised of multiple consultations and engaged caregivers delivered better functional and economic outcomes.     

Familial colloid cyst of the third ventricle

We describe the cases of a mother and son who presented one year apart with a colloid cyst of the third ventricle. The mother was symptomatic and had complete resolution of her symptoms after surgical intervention. Her son was asymptomatic. There have been several reported instances of a familial association of colloid cysts of the third ventricle. The probability of a colloid cyst occurring in the same family coincidentally is possible, but highly unlikely (1 x 10(10)). The increasing number of reports of the familial incidence of colloid cysts would suggest the possibility of an autosomal dominant inheritance pattern, but to date, a familial pattern of inheritance has not been recognised. If there is a potential genetic link, then screening of asymptomatic relatives may be indicated. With non-invasive imaging techniques, such as computed tomography and magnetic resonance imaging scanning, accurate diagnosis and effective elective treatment is possible. This may result in preventing future complications as a result of hydrocephalus or sudden unexpected death, and also reduce morbidity as surgery can be done electively rather than as an emergency procedure.     

Mothers’ views of caseload midwifery and the value of continuity of care at an Australian regional hospital

Objectiveto evaluate mothers’ satisfaction with a caseload-midwifery scheme, and whether this varied according to the extent of continuity of care provided.Designmothers’ satisfaction with care was assessed using a postal survey, which was linked with their clinical outcomes data.Settingthe Wollongong Hospital, the major public hospital in the Illawarra region, New South Wales, Australia.Participants174 women gave birth during the evaluation period of a pilot midwifery group practice (MGP) programme at the Wollongong Hospital between 5 July 2004 and 30 April 2005. This group included 87 primiparous and 87 multiparous women, all of whom met the Australian College of Midwives’ criteria for low-risk pregnancies.Interventionthe MGP was staffed by six midwives working in two groups of three. Each midwife took on a primary caseload of 40 women per year, and provided support as a secondary midwife to women cared for by colleagues.Measurementsmothers’ satisfaction with care and adjustment to motherhood were assessed with self-completed questionnaires. Survey responses were linked with clinical data, allowing examination of the relationship between maternal satisfaction and continuity of care.Findingsthe MGP achieved high levels of continuity of care, both objectively (based on birth records) and from mothers’ perspectives. Overall, mothers’ evaluations of their care were very positive. Women indicated that their relationships with their midwives were genuinely caring and a valued source of reassurance and comfort during pregnancy, labour and early motherhood. Although continuity of care did not predict summary scores for maternal satisfaction, it was related to some individual items on the satisfaction scales. Satisfaction with control and communication was predicted by parity and the level of intervention during labour and birth.Key conclusionscontinuous care appears to facilitate the development of supportive relationships between women and their midwives. Women's perceptions about continuous and respectful treatment were related to objectively measured continuity of care. The qualitative data confirm the importance of less tangible benefits, such as the quality of relationships between women and their caregivers.Implications for practicethe viability of caseload-midwifery-led care for low-risk pregnancies depends, in part, on the model's acceptability to consumers. This study demonstrated that the caseload model is associated with high levels of maternal satisfaction. Supportive relationships with midwives in a caseload scheme are highly valued by women.     

Family meetings for older adults in intermediate care settings: the impact of patient cognitive impairment and other characteristics on shared decision making

Background

Clinicians, older adults and caregivers frequently meet to make decisions around treatment and lifestyle during an acute hospital admission. Patient age, psychological status and health locus of control (HLC) influence patient preference for consultation involvement and information but overall, a shared‐decision‐making (SDM) approach is favoured. However, it is not known whether these characteristics and the presence of cognitive impairment influence SDM competency during family meetings.

Objective

To describe meetings between older adults, caregivers and geriatricians in intermediate care and explore patient and meeting characteristics associated with a SDM communication style.

Methods

Fifty‐nine family meetings involving geriatricians, patients in an intermediate care setting following an acute hospital admission and their caregivers were rated using the OPTION system for measuring clinician SDM behaviour. The geriatric depression scale and multidimensional HLC scale were completed by patients. The mini‐mental state exam (MMSE) assessed patient's level of cognitive impairment.

Results

Meetings lasted 38 min (SD 13) and scored 41 (SD 17) of 100 on the OPTION scale. Nine (SD 2.2) topics were discussed during each meeting, and most were initiated by the geriatrician. Meeting length was an important determinant of OPTION score, with higher SDM competency displayed in longer meetings. Patient characteristics, including MMSE, HLC and depression did not explain SDM competency.

Conclusion

Whilst SDM can be achieved during consultations frail older patients and their caregivers, an increased consultation time is a consequence of this approach.     

Quality of life of adolescents with cerebral palsy: perspectives of adolescents and parents

Quality of life (QOL) has emerged over the past 20 years as an outcome for measuring the effectiveness of health‐improvement interventions. The Cerebral Palsy Quality of Life Questionnaire for Children (CPQOL‐Child) is well regarded and now integrated into research internationally. We describe the results of qualitative research, using grounded research in which we aimed to identify domains of QOL for adolescents with cerebral palsy (CP) from adolescent and parent perspectives to guide the development of an adolescent version. Seventeen adolescents (nine males, eight females) aged 13 to 18 years (mean=15.53 SD=1.74), with varying levels of impairment (Gross Motor Function Classification System levels I n=5, II n=2, III n=6, IV n=4, and V n=6) and their parents (n=23) participated in semi‐structured interviews. Questions included: ‘What do you think is important to your (child’s) QOL?’ and ‘How does CP impact on your (child’s) life?’ Fifteen themes were identified, including domains related to health issues in adolescence, participation, education, specific CP‐related issues (pain and discomfort, communication), family issues, practical issues (financial resources), and changes associated with adolescence (sexuality, independence). The composition of these QOL domains reflects the developmental concerns of adolescents with CP, adding to the views of children, and strongly supports adolescent participation in the development of self‐reported well‐being and QOL measures. Many of the domains are consistent with child reports of QOL and thus it appears feasible and valid to develop a measure that will be transferable across childhood and adolescence.     

Stem cells in the aetiopathogenesis and therapy of rheumatic disease

Animal models of autoimmune disease and case reports of patients with these diseases who have been involved in bone marrow transplants have provided important data implicating the haemopoietic stem cell in rheumatic disease pathogenesis. Animal and human examples exist for both cure and transfer of rheumatoid arthritis, systemic lupus erythematosus (SLE) and other organ-specific diseases using allogeneic haemopoietic stem cell transplantation. This would suggest that the stem cell in these diseases is abnormal and could be cured by replacement of a normal stem cell although more in vitro data are required in this area. Given the morbidity and increased mortality in some patients with severe autoimmune diseases and the increasing safety of autologous haemopoietic stem cell transplantation (HSCT), pilot studies have been conducted using HSCT in rheumatic diseases. It is still unclear whether an autologous graft will cure these diseases but significant remissions have been obtained which have provided important data for the design of randomized trials of HSCT versus more conventional therapy. Several trials are now open to accrual under the auspices of the European Bone Marrow Transplant Group/European League Against Rheumatism (EBMT/EULAR) registry. Future clinical and laboratory research will need to document the abnormalities of the stem cell of a rheumatic patient because new therapies based on gene therapy or stem cell differentiation could be apllied to these diseases. With increasing safety of allogeneic HSCT it is not unreasonable to predict cure of some rheumatic diseases in the near future.