Anna Ugalde

Unmet needs and distress in people with inoperable lung cancer at the commencement of treatment

PurposePeople with lung cancer report a higher burden of unmet needs, specifically psychological and daily living unmet needs. They experience more psychological distress and more physical hardship than other tumour sites. This study examined the levels of unmet need and psychological distress in inoperable lung cancer patients at the start of treatment.MethodsA cross-section survey methodology was employed using baseline data from a randomised controlled trial designed to evaluate a supportive care intervention. Eligible lung cancer patients were approached to participate at the start of treatment. Consenting patients completed questionnaires prior to or just after the commencement of treatment. Reliable and valid measures included Needs Assessment for Advanced Lung Cancer Patients, Hospital Anxiety and Depression Scale and Brief Distress Thermometer.ResultsOf the 108 patients participating, the top unmet need was ‘Dealing with concerns about your family’s fears and worries’ (62%); with the next four also coming from the psychological/emotional domain, but, on average, most needs related to medical communication. Thirty two percent of patients reported clinical or subclinical anxiety and 19% reported HADS scores suggestive of clinical or subclinical depression. Moreover, 39.8% of the sample reported distress above the cut-off on the distress thermometer and this was associated with higher needs for each need subscale (p < 0.05).ConclusionsPeople with lung cancer have high levels of unmet needs especially regarding psychological/emotional or medical communication. People with lung cancer who are classified as distressed have more unmet needs.

Role recognition and changes to self-identity in family caregivers of people with advanced cancer: a qualitative study.

PurposeFamily caregivers of people with advanced cancer can provide extensive support to the patient. However, the role is not well defined and their experiences are poorly understood. This study aimed to explore how caregivers view their role and the impact of their caregiving.MethodsA symbolic interactionist framework guided the in-depth individual interviews and grounded theory methodology was used to analyse the data. A total of 17 interviews were conducted: 13 with active caregivers and 4 with bereaved caregivers.ResultsThree dominant codes are presented. Caregivers lacked role recognition, as they struggled to recognise their role existed, even though they took on extensive and challenging tasks. Caregivers reported substantial loss or changes to their self-identity: with some caregivers reporting not being able to stop thinking about caregiving and others having difficulty answering questions about themselves. Caregivers also demonstrated difficulty in taking a break: active caregivers did not consider taking a break, whereas bereaved caregivers retrospectively admitted needing a break but reported an inability to take one.ConclusionsCaregiving is complex and extensive. People who care for those with advanced cancer are in need of intervention to provide support and assistance to them in their role. However, this needs to be structured with consideration for how caregivers view their role.

A tailored, supportive care intervention using systematic assessment designed for people with inoperable lung cancer: a randomised controlled trial

People with inoperable lung cancer experience higher levels of distress, more unmet needs and symptoms than other cancer patients. There is an urgent need to test innovative approaches to improve psychosocial and symptom outcomes in this group. This study tested the hypothesis that a tailored, multidisciplinary supportive care programme based on systematic needs assessment would reduce perceived unmet needs and distress and improve quality of life.

Cancer Treatment Survey (CaTS): development and validation of a new instrument to measure patients' preparation for chemotherapy and radiotherapy

Objective: Cancer patients experience high levels of pre‐treatment anxiety. Chemotherapy and radiotherapy are threatening medical procedures. Preparation for these procedures should include the provision of sensory and procedural information, and addressing fears. The aim of this study was to develop a cancer treatment survey (CaTS) to assess the preparation for chemotherapy and radiotherapy in cancer patients.

The Relationship between Self-Efficacy and Anxiety and General Distress in Caregivers of People with Advanced Cancer

BACKGROUND Informal caregivers take on an important role in supporting people with advanced cancer but experience significant psychological distress. OBJECTIVE This study aims to describe the prevalence of anxiety and distress in a sample of caregivers of people with advanced cancer and explore the relationship with self-efficacy. METHODS A cross-sectional survey was used. Subjects were 94 caregivers of people with advanced cancer recruited from a specialist oncology setting. Questionnaires included the Caregiver Self-Efficacy Scale (CaSES), the State Trait Anxiety Inventory (STAI), and the Distress Thermometer. Demographic data were recorded. RESULTS The sample consisted of 94 caregivers of people with advanced cancer. The majority were female (66; 70.2%) with a mean age of 55 years. The mean distress score for the sample was 4.87 (standard deviation [SD] 2.49). Fifty-five caregivers (59.1%) had a score of ≥5 on the Distress Thermometer indicating distress. The state anxiety mean was 45.21 (SD 12.32) and trait anxiety mean was 41.21 (SD 10.143). Females had more distress and state anxiety than males. Only one self-efficacy scale, self-maintenance, correlated with distress. All STAI scores correlated with self-efficacy and self-maintenance had the strongest relationship. CONCLUSIONS Caregivers had high anxiety and distress. Caregivers with higher anxiety reported lower self-efficacy. The strongest correlation was with the self-maintenance subscale, indicating an association with psychological functioning and caregivers who are able to access respite and take care of themselves during care provision.

Development of an instrument to measure self-efficacy in caregivers of people with advanced cancer

Informal caregivers of people with advanced cancer experience many negative impacts as a result of their role. There is a lack of suitable measures specifically designed to assess their experience. This study aimed to develop a new measure to assess self‐efficacy in caregivers of people with advanced cancer.

Validation of the needs assessment for advanced lung cancer patients (NA-ALCP)

Objective: The Needs Assessment for Advanced Cancer Patients (NA‐ACP) is a 132‐item self‐report questionnaire designed to assess the seven needs domains of patients with advanced, incurable cancer. This study aimed to evaluate the short derivative form of that questionnaire with advanced lung cancer patients.

Self-guided interventions for managing psychological distress in people with cancer - a systematic review

OBJECTIVE People with cancer can experience psychological distress but do not always desire, or engage with, professional support to assist with managing distress. Interventions that are self-directed or guided by patients may hold promise as they allow patients to engage with interventions as they need. The objective of this review is to describe and appraise the evidence for effectiveness of self-guided interventions that aim to manage psychological distress in people with cancer. METHODS A systematic search of Medline, PsychInfo and CINAHL identified 15 relevant papers, reporting on 14 studies. RESULTS Of the interventions, three studies comprised hard-copy workbooks, six studies used resource packs, four were online resources and one was a brief multimedia resource. One study was adequately powered and demonstrated a positive effect. Almost all interventions required some level of facilitation. Distressed participants may benefit more from interventions. CONCLUSION Self-guided interventions represent a potentially efficient way of delivering support for people affected by cancer, however evidence supporting them is lacking. PRACTICE IMPLICATIONS There is a need to generate evidence to understand the impact of self-guided interventions for: i) the ideal delivery point in the disease trajectory, ii) patient groups, iii) intervention content and iv) type and mode of delivery.

‘The horse has bolted I suspect’: A qualitative study of clinicians’ attitudes and perceptions regarding palliative rehabilitation:

Background: Palliative care patients have numerous rehabilitation needs that increase with disease progression. Palliative rehabilitation practices and perceptions of palliative medicine physicians towards the role of rehabilitation are largely unstudied. Aim: To explore palliative medicine physicians’ attitudes and perceptions towards rehabilitation delivered within inpatient palliative care units. Design: Qualitative study utilizing semi-structured interviews. Transcribed interviews were analysed using thematic analysis and major themes reported as results. Participants: Australian palliative medicine physicians working in inpatient palliative care units. Results: In total, 20 physicians participated, representing specialist palliative care services across Australia. A total of 11 (55%) were males with an average of 12.5 years’ experience working in palliative care. Most participants believed rehabilitation was an important aspect of palliative care; however, few felt adequate rehabilitation programmes were available. Participants varied in their concepts of what palliative rehabilitation entailed. The term rehabilitation was seen by some as helpful (fostering hope and aiding transitions) and by others to be misleading (creating unrealistic expectations). Four key themes emerged when describing physicians’ attitudes, including (1) integrating rehabilitation within palliative care, (2) the intervention, (3) possibilities and (4) the message of rehabilitation. Conclusion: A lack of consensus exists among palliative medicine specialists regarding the definition and scope of palliative rehabilitation. Participants generally expressed a wish to offer enhanced rehabilitation interventions, however described resource and skill-set limitations as significant barriers. Further research is required to establish an evidence base for palliative rehabilitation, to support its acceptance and widespread integration within specialist inpatient palliative care.

Restorative care for palliative patients: a retrospective clinical audit of outcomes for patients admitted to an inpatient palliative care unit

Background Restorative care in palliative care is a subset of rehabilitation that aims to improve quality of life through restoration or maintenance of physical functions. Outcomes for restorative care programmes delivered by palliative care units have not adequately been assessed. Objectives The objectives are to examine the outcomes of a restorative care programme in an inpatient palliative care unit, including discharge destination, performance status changes and length of stay. Methods Retrospective clinical audit of consecutive patients admitted to Calvary Health Care Bethlehem in Melbourne, Australia, principally for restorative care from July 2010 to December 2011. Results 79 admissions met inclusion criteria. Mean age was 76.5 years (SD=11.14) and 43 (54%) were men. 75 (95%) patients had a malignant diagnosis; of these, the majority had lung cancer (24%). 16 patients (20%) were discharged home, 51 (65%) died and 12 (15%) were transferred. Of the patients discharged home, only 6 (38% of those discharged home) improved their performance status. Those discharged home had a significantly shorter length of stay (17 days compared to 39 days; p<0.05). Patients discharged home also had significantly better Australia-modified Karnofsky Performance Status (AKPS) and Resource Utilisation Groups-Activities of Daily Living (RUG-ADL) scores on admission than others (both p<0.05). Conclusions The majority of patients referred for restorative care died during admission, with only a minority discharged home. Patients discharged most commonly experienced maintenance and not improvement in performance status. A successful discharge home following restorative care was associated with a shorter length of stay. Implications and recommendations for successful restorative care will be discussed.